Monday, May 9, 2016

Lyme Ninja Radio Interview

I had the wonderful opportunity to share my Lyme story with Mackay Rippey of Lyme Ninja Radio. What a great guy! We talked first about my personal journey, then got into some of the details to help people be their own advocate. More tips are in my "10 Tips to Be Your Own Lyme Advocate" post.  Mackay has such warmth that it felt like talking with an old friend.  Enjoy and share!



Friday, March 4, 2016

An Emotional Herx

The nurse at my doctor, I'll call her "J," is so kind, comforting and a lovely human being. She suggested I write about the "emotional herx," because it might be helpful for other patients to read that someone has had this experience and that it is possible to herx just emotionally, whether that is depression, anxiety, sadness, or suicidal thoughts.

Lyme patients deal with something called a Herxheimer reaction, or simply a "herx." This is an increase in symptoms once treatment is started when the antibiotics, herbals or other alternative therapies kill off the bacteria. When the bacteria die they release a toxin and, depending on how efficient the patient's detox pathways are, that reaction can either be cleared relatively easily or require diligence on the patient's part to assist the body in detoxing.

I have experienced a herx on many occasions while doing antibiotics, acupuncture, rife therapy, and herbals. Most often my herx would be a period of a day or two in which my physical symptoms were exacerbated and I felt extremely "toxic" all over. My spine would ache and burn, my headaches were worse, my whole body felt like it was on fire, I would swing wildly from hot flashes to freezing, sometimes I vomited, sometimes a random joint in my body would become inflamed, and I would fall down the rabbit hole of deep, dark depression. After an epsom salt bath and drinking lots of water the herx would clear and in about 24-48 hours I would feel better.

Since about June of 2015 I have been doing UVL therapy, ultraviolet light therapy, every two weeks and other than the migraine "flares" I have twice a month which remain debilitating, most days I am getting closer to feeling like I did before I got sick. However, when I do the UVL therapy, I get severely depressed for the two days after like when I was overrun with bacteria during the worst days of my illness.

I have been able to chart the depressive episodes and they correlate directly with the UVL therapy. I find it interesting that now that I'm not having such intense physical symptoms I can see so clearly the emotional component of this illness. I was a positive person before I got Lyme and never had a depressive episode, nor was I suicidal. The depression that went along with this was so hard for me to accept. I've written this before and it is worth saying again, depression is depressing.

The day after the UVL therapy I wake up and feel very hopeless, with zero energy. My anxiety is worse and I feel slightly suicidal again. The first time I had this emotional herx I was thrown right back to that place of being ill and thinking "this will never end." But then two days later the dark veil lifted and then when it happened again I realized it was an emotional herx. I discussed this with my doctor and his feeling was that my lymph system wasn't draining efficiently after killing off bacteria with the ULV, so we've taken steps to improve that. I have a rebounder (a small trampoline) at home so I've used that after the UVL as well as Spanish Black Radish, taken to support lymph drainage.

I just had UVL two days ago as of this writing and implemented the new protocols. I didn't wake up feeling severely depressed the day after so possibly what we're doing is working. I continue to be tired pretty much all of the time but I think that is my severely depleted adrenals, which will always have to be supported.

Lyme spirochetes can get into the emotional center of the brain and the nervous system, so it makes sense that continuing to kill off whatever bacteria is left in those places would cause an emotional herx. I have been told that we heal in the reverse order in which we got sick and since the first symptoms to show up for me were insomnia, severe anxiety and depression, maybe I am crossing the finish line.

See this excellent piece by psychiatrist Dr. Robert Bransfield, - "Lyme, Depression and Suicide.

Monday, February 22, 2016

How to Let Go of the Past and Embrace What Is

"At some point you just have to let go of what you thought should happen, and live in what is happening." - Heather Hepler, The Cupcake Queen

What I THOUGHT should happen was a successful acting career, marriage and kids. What DID happen was Lyme Disease, Babesia, Breast Cancer and early menopause, making the kid thing obsolete. There was painful disappointment, bitterness and tears. But I refuse to be bitter.  I only have so much time left on this earth and I won't use up my energy in bitterness.

My apartment furniture is still in storage in Los Angeles, and has been since 2009. First I assumed I would be heading back any day to get my things out of storage and continue my acting life where I left off.  Then I thought eventually I would head back and try to pick up the pieces. It has taken me seven years to accept that I'm not going back, ever, and the physical objects in my storage unit were a painful reminder of my hopes and dreams that weren't going to be fulfilled.  Letting go of that stuff felt to me like giving up on the dream.

As the new year dawned I finally had the mental and physical energy to go through old paperwork and files from that time in my life.  I shredded bags worth of old energy and upon doing so felt a huge release. I finally gave up some clothes from my life in Los Angeles, and now I'm ready to tackle my storage unit and truly let go of what that represents.

Steps that helped me let go and move forward:
1. Acknowledged the pain that was there regarding lost opportunities, unfulfilled dreams or difficult life detours or tragedies
2.  Forgave myself for not being able to achieve my goals
3.  Acknowledged the limitations I had in the present
4.  Accepted my life as it was in the present
5.  Cleaned out my physical space, when I was ready, of old items that didn't serve me in my life as it is now 
6.  Meditated and created an open space in my heart and soul for possibilities

I have found the sooner I can let go of the bitterness of unfilled past expectations, the sooner I seem to be healing in the present. I think that also translates into finally joyfully moving forward into an exciting and opportunity filled future.


Wednesday, February 10, 2016

The Suicidal Side of Lyme

This is hard to talk about, and hard for family members and friends of Lyme disease patients to hear. It's depressing, scary and dark. But it's real and we need to talk about it because Lyme patients are committing suicide.

Imagine you are addicted to peanut M & Ms or any food you know isn't good for you in large quantities. You think about them all the time and you can't stop eating them. Then you realize you're gaining weight, the sugar is making you feel sick and you know they're bad for you. But when you wake up, the first thing you think about is having a peanut M & M. All day, you can't stop thinking about them. A little voice keeps whispering "just do it, have an M & M." Eventually, you might succumb and have just a few. Then more. Ugh. It's so hard to resist.

This is what if feels like to have suicidal ideation (unusual preoccupation with suicide) when you have Lyme disease. The Lyme bacteria (borrelia burgdorferi) have invaded the brain and there is severe inflammation. The bacteria affect the emotional center of the brain and along with depression, anxiety, paranoia and Lyme rage comes relentless suicidal thoughts. You can't stop thinking these thoughts. It's like a heavy pressure that weighs constantly on you. The suicidal thoughts aren't a conscious, "I want to kill myself." Instead, there's a dark voice you don't even recognize as you that haunts and taunts, whispering constantly, "just do it." And it's so hard to resist because there is so much pain, every day, all day long, compounded by a deep depression that has no end. Committing suicide is the better option.

It takes a very strong person to resist these thoughts when the body is so weak, in so much pain and fighting for its life. Add to that the pressure of outside influences like a doctor and family members who don't believe the patient that they are really "that sick," and what you get is a patient who follows through and listens to that dark voice.

What the patient needs is a doctor and family members who will validate how sick they are and who will constantly remind them of who they were, that the suicidal thoughts aren't them and that it is, indeed, a serious bacterial infection in their brain making them think this way. The patient needs people around them who validate that they need to be treated, who will give them support while they are treated, who will remind them that they are loved, that their life is worth living, and that they are valuable.

Somehow, I resisted that dark voice. It spoke to me every day for more than a year, although prior to Lyme I had never had a suicidal thought. When I woke in the morning, before I opened my eyes, the first thought that whispered to me was, "how will I kill myself today?" I would run through in my mind the various ways I could and it gave me a strange comfort to know that I had an out. I had an out from the hideous pain and deep, dark all encompassing depression I was in. There were many days I wanted to give in. It would be so easy to just give in and not feel the pain in every nook and cranny of my body. The hardest part about Lyme is that when you start treatment and the bacteria die off they release toxins that can exacerbate your symptoms and suicidal thoughts. Just when you are in the most pain, you have to dig even deeper to  keep going. To me it felt like a demon in my brain challenging me to fight with everything I had left.

But I found a way to keep the pressure of that dark voice out. I am one of the "lucky" ones because I had friends and family and a knowledgeable doctor and therapist whose love and support kept a pin prick of light shining through the darkness. I grabbed on to that light and it grew and with years of medicine, treatment and healing the suicidal thoughts are gone. Gone. Lyme disease did that to me.

If you have Lyme disease and you are having relentless, suicidal thoughts, reach out to other patients and support groups. Find a knowledgeable therapist who you can speak to. Don't try to fight it alone. If family members and friends don't understand, don't waste precious energy trying to make them. This is a fight for your life. Find the people who will listen, who understand what you are experiencing and who will remind you that your life is worth living, because it is. I have been in the deepest, darkest place and if you can just hang on for another second, and then another one, and keep fighting those bugs, there will be light.

We need to talk about this because, in the throes of this illness, Lyme patients are committing suicide. 

Suicide Prevention Web-site

Suicide Prevention Hot-line - 1-800-273-8255

Yahoo Lyme Groups By State - Scroll Down for Groups Listed by State - You can connect with members of the Lyme community in your state.

Disclaimer: I am not a medical professional. I am a Lyme patient and I am sharing my own experience. If you have Lyme disease or think you have Lyme disease and are experiencing suicidal thoughts, please consult a Lyme literate doctor or psychiatrist. 

Thursday, February 4, 2016

Pain Acknowledgement

Here is what has been said to Lyme patients regarding illness..."You just need to get up and get moving." "Get over it." "Gee, I wish I could stay in bed all day and do nothing." "What's your problem?" Here is what would be much more healing and helpful..."I'm sorry you are in so much pain." "How can I help you feel better?" "Yes, what you're going through sucks."

Sometimes, what a person needs, is to have the pain in their soul, the break in their heart, the physical aches in their body acknowledged and validated. We are a culture that says, "It will get better, get over it, move on. You'll find someone or something better. You'll be fine." But this does not allow space for the hurt to be recognized and in being recognized start the healing process. Sometimes what we need is to hear, "Yes, your pain is real, what has happened is awful and it may never be ok. And that is ok." Somewhere in the acknowledgement of "not ok," healing can begin.

Tuesday, January 12, 2016

Ten Tips to Be Your Own Lyme Advocate

When I was so sick in the beginning of my Lyme disease journey all I wanted was for someone to hand me a magic pill so I could get back to my life. It took me two years to understand that I had to be an active participant in my own healing and once I had that epiphany, my healing really accelerated. Here are TEN TIPS to help you ADVOCATE for yourself. This is specifically about Lyme disease but could apply to any illness. 

1. EDUCATE yourself about the illness you are fighting. You can't fight an enemy you don't know.

2. ACCEPT you are sick and don't waste energy fighting the reality of your illness (accepting you're sick doesn't mean you are giving up!) There is no shame in accepting the truth of your current situation and it takes energy to resist your reality. Put all of that energy into healing.

3. WALK AWAY from any doctor who invalidates what you are feeling. Again, this is an energy waster. Trust your intuition and what your body is telling you. Find a doctor who will help you get better.

4. REACH OUT for support to support groups on-line, in your community, to friends and family. Let others decide if they can help...you won't know if you don't ask! Some people may disappoint you, but others will support you.

5. At DOCTOR'S APPOINTMENTS ask for copies of everything (it's your health information!), take a picture to your doctor of when you were healthy and ask that it be put in your file, take someone with you to the doctor (they help the doctor see you as a whole person and can be helpful in reminding you of what was said in the appointment), and take a recorder if the doctor allows it so you can listen back to any important instructions afterwards. Some doctors will allow this, some won't.

6. Know what's in the MEDICINES and SUPPLEMENTS you are taking; something could be making you feel "unwell" and we attribute that to a herx. However, for example, if you are allergic to soy and that is in the medicine or supplement you are taking you could be having an allergic reaction. READ ALL LABELS AND ASK QUESTIONS.

7. FINANCES - Look into patient assistance programs for anything you are taking at www.rxassist.org. Or you can do a search of the name of the medicine you take, the manufacturer (this is usually right on the bottle or the papers you get with the prescription) and "coupons" or "patient assistance programs" and you will see a list of the different coupons and discounts available for that medicine.

8. REST ON YOUR BEST DAY. Another support group leader suggested this to me, Eric Huck of the Harrisburg Area Lyme Disease Support Group. It is counter intuitive because when we feel well we want to catch up on life and do everything we couldn't do on our sick days. But if you rest on your best day, you will have that much more energy in the days after.

9.  DEPRESSION, ANXIETY, SUICIDAL THOUGHTS, FRUSTRATION, LYME RAGE - Know when to seek help. Even the most motivated patient needs a professional outside of the family or friend circle to speak with about these very difficult aspects of Lyme and Tick-borne diseases. There is no shame in knowing you need help and asking for it before it's too late.

10. YOUR LIFE - It's your time, your money and your LIFE so don't waste it doubting yourself. Get the answers you need when at the doctor, encourage family and friends to read up on the illness you're dealing with so they understand your journey (if they don't, accept it and move on), and practice giving yourself unconditional love. You are battling a difficult illness...don't make it harder by being abusive to yourself. Take care of yourself and have patience in the healing process.


Thursday, December 10, 2015

Identity

We create an identity by what we do for a living, who are friends are, how we are valuable to other people, what we are good at, the clothes we wear, amongst other identifiers. So when all of that is taken away, who are we? Imagine you are an athlete who can't play anymore. A nurse who can't heal anymore. A go getter who can't "go" anymore. This is what happens to Lyme patients. All identifiers are stripped away. Someone might find their identity in being a great Mom, or a supportive spouse. Lyme takes that away too, as patients lose their ability to function and engage with the world. The patient is a shell of their former self, no identifiers to identify them as anything other than "sick."

When all external identifiers are stripped away, one learns that what is left is a human being and that it is enough. You are more than your job, the role(s) you play with everyone in your life, or what you are good at. The lives we build are an external framework of our own doing but what endures is our soul. When all the superficial is stripped away, what is left is our truest essence and we learn that it is all we have ever needed.

Thursday, September 18, 2014

Why It Takes So Long to Recover from Lyme Disease

Like everything with Lyme disease, recovery is slow and it's a fight in every phase.  I'm healing in layers, inch by inch and I can see progress across the years, not the days or weeks.  I continue to rife which I believe has kept me off of antibiotics since August of last year.   I continue to seek herbs and supplements to add to my protocol and to take things out that I no longer feel are helping me.

I started physical therapy a month ago thinking that I would be able to jump right in to a regular workout.  My mind still thinks I am the athlete I used to be but my body knows better.  After one set of arm raises I was exhausted and my back and arms burned.  I am once again reminded how sick I have been.  After an upper body workout I get sick and I believe it is die off from any bacteria that is still lingering deep in my joints and muscles.  My feeling is that when I went on i.v. antibiotics the drugs killed whatever bacteria was in the blood, but the rest of them ran for their lives burrowing into my joints and tissue.  I could feel them when it happened, it felt like bugs moving under my skin.  I have been told that is not possible, but I know what I felt.  The reason I'm still unwell is that the bacteria that burrowed deep into the tissue and formed cysts is now coming out and I am continuing to kill that off with the rife.

I'm doing another therapy called I.M.T (Integrative Manual Therapy) and find it is helping me on some level.  I'm not exactly sure how it works, and at this point in my healing have learned to just trust if something is making me feel better.   I feel calm after a session and the therapy has stopped two migraines from lasting their usual five days.  It also seems like it is helping my adrenals to re-balance. 

It takes so long to recover from "Lyme disease" because Lyme is just one part of the problem; there are co-infections to treat, any viruses that have now been unleashed, fungal infection (candida that may have already been present but exacerbated by antibiotic use), hormonal imbalances, thyroid and adrenal issues, mineral deficiency, heavy metal burden or toxicity and now food intolerance and chemical and environmental sensitivity.  This is not the case for most patients treated right away.  This is my story and the many patients who went months or years misdiagnosed or undiagnosed.  Left unchecked, the Lyme bacteria wreaked havoc on many other body systems.  Read Dr. Richard Horowitz's excellent book, "Why Can't I Get Better?" to understand more about this complex set of symptoms and disease. 

Personally it has taken me six years now to get to a place where I am feeling well more days than not.  I still have about ten days a month in which I am really unwell, sometimes I have a day or two in bed.  That is why recovery is slow and long; it is not a constant upward trajectory towards wellness and then one day it is gone.  It is an upward swing followed by a downward plunge, followed by another upward swing, followed by another low.  The mental gymnastics required to keep up with these unpredictable physical changes are exhausting on another level; I wake up feeling positive but by mid-day I'm aching and feverish so any plans for the day have to be cancelled.

I keep moving forward because I've learned there isn't really any other choice.  Even though the forward progress is maddeningly slow, it's progress in the right direction. 

Tuesday, February 25, 2014

The Skinny

There's this thing that people say and they think it's a compliment.  "You're so skinny!"  Often, it's not said in a tone like when you say to someone, "your hair looks awesome!"  I have found the skinny comment often comes with a snide tone and some judgement.   On the opposite side of that, it's not at all socially acceptable to say to someone, "you're so fat!"  Here's a thought on this; maybe we stop making it our business what other people look like.  The body's natural state is balance, so obviously an obese person or someone who is super skinny is probably not in a healthy, balanced place whether that is from physical illness, genetics, diet, emotional trauma or the result of trauma of any kind.  How do you know if the super skinny person isn't going through chemo?  Or maybe has experienced a bad break up or the death of a loved one or some other life stress that has caused them to lose their appetite?  How do you know if the obese person isn't sick, or hurt him/herself and can't exercise, or  is literally eating to heal their soul?

My weight has fluctuated a lot since college.  I'm 5'3" and in college weighed 145 lbs.  I thought I was fat.  Looking back I was just a college athlete who was in super great shape because I played field hockey and lacrosse and ran a lot.  I weighed more then because I was basically solid muscle and beer.  After college I lost about ten pounds and struggled for years to lose another ten, always thinking I was fat.  I started an acting career, moved to Los Angeles and lost another ten pounds.  I still thought I was fat.  I exercised often, pushing myself and pushing myself.  Along came adrenal fatigue, lyme disease and breast cancer.  Now I was losing weight at an alarming rate.  At my thinnest I was about to drop below 100 lbs and felt like I was literally wasting away.  I also felt the worst I had ever felt in my life.  Talk about a wake up call!  So I have been on both sides of the equation; looking at super skinny women and thinking, "look at that skinny chick, she's probably anorexic," (judgement on my part) and being told "look at you, ooh, you're so skinny, you need to eat something" (judgement on their part).

I'm proposing that if you need to say something to someone about their appearance, don't speak unless you can genuinely say, "You look so healthy.  You must take great care of yourself!"  Because that is really what it should be all about.   

Monday, February 10, 2014

Rife

IV ANTIBIOTICS ROUND UP
I finished up 6 months of i.v. rocephin in August of last year.  I really think the i.v. antibiotics were a necessary part of my healing.  They got me to another layer of wellness and definitely made a difference with my brain and ability to focus and take in information.  I still have a hard time when I'm tired, but it's not like before where every day was miserable.  The down side of the i.v. antibiotics is that I had an E.R. visit because of my gallbladder.  I had been warned about this and knew it was a possibility, but it was still so scary when it happened.  I thought I was having a heart attack, because the gallbladder pain radiated into my chest.  My test results were "normal," ha!  The pain went away but I had to be super careful about dairy and fat intake (both of which can agitate the gallbladder).  I started taking something called Actigall as well while on the antibiotics.  But even after being off of the antibiotics for 6 months now, I still have to be careful with fat intake.

HOMEOPATHY
I saw a homeopath after I went off of the antibiotics.  He was amazing and so intuitive.  He gave me a remedy in his office that day.  I got really, really sick two times after that, but he had warned me I would.  There is no doubt that the homeopathic remedy he gave me drastically healed my gut.  It was expensive to see him but I feel like even if the only thing that disappeared were the painful stomach issues...totally worth it.  I really had to give over to his knowledge because I didn't fully understand how the remedy could work like that.  He gave me something called Lachesis Muta, otherwise known as snake venom.  The rule of homeopathy is "like heals like," and the way it works is if a particular remedy CAUSES a certain set of symptoms, then said remedy should HEAL those same symptoms.  There are other factors that come in to play that the educated and experienced homeopath uses to treat you.  I have learned so much about healing and my body in this journey. 

BREAST CANCER FOLLOW UP
There was a follow up mammogram right before Christmas and I got the best present I could ask for.   A clean mammogram!!!  Now I have to go back in a couple of months for another one.  I've researched this though (having become an expert researcher because of lyme) and I think mammos and MRI's are not a good thing for me.  I have dense breasts and I have learned that with dense breasts mammos don't always pick up what's there.  I'm looking into thermography and other options for me.  It just doesn't make sense to me to continue to expose my already damaged breast tissue to radiation every 6 months as well as smushing it this way and that way during a mammo.  Seriously, somebody has got to find a better way.


RIFE MACHINE
I started using a rife machine about 3 months ago, a GB4000.  I think it's helping.  When people mentioned a rife machine to me when I was first sick I thought, "these people are CRAZY."  That will never be me.  But I have crossed over officially to all things alternative and now here I am.  This is the last frontier for me healing wise.  I have tried all of the other possibilities and I am still only about 80% of functioning.  I can still feel infection lurking in my joints and waiting to flare when I am tired or stressed.  I'm hoping with the rife machine I will finally be released from the lyme.   Here' s a link to learn more about rifeing and Dr. Royal Rife.  It requires it's own post!  Like all things lyme, the topic is controversial and there are people on both sides of the argument...it works/it doesn't work and is a scam.  The last thing sick people need is yet something else to fight over.  Sigh. 

Saturday, June 22, 2013

I.V. Antibiotics-Month 3, Hormones, Breast Cancer Follow up, Menopause and Children

I'm on month 3 of i.v. rocephin and I'm feeling GREAT.  Not just good, but great.  There are more days of feeling normal now and last month, while I still had a flare, it was minimal and I was functional during it.  I've gained 6 pounds and it doesn't hurt to sit anymore.  I've been able to exercise, now walking again for 45 minutes without fatigue.  I actually have an appetite.  I think the multi-pronged approach has really been what has worked for me.  We're treating the adrenals, the hormones, the viruses (EBV and Herpes), and now crushing the lyme with i.v. antibiotics.  I also take Grapefruit Seed Extract and Diflucan (both of which help to eradicate the cyst form of the spirochete.)  I take B5, B6 and B12 (shots), L-Lysine, Cysteplus, Valtrex (anti-viral), Vitamin D, Hydrocortisone (which I feel I will be able to finally be weaned off of!), Magnesium, and a sleeping pill.  I'm still doing a photo oxidation session every few weeks.  All of these things combined have gotten my body to a place where it feels the best it has felt in years.  I'm also doing healing meditations which have definitely helped with my sleeping issues. 

Reading back over my blog it is so frustrating to see that in 2009, when I was treated with doxycycline I started feeling so much better and it was clear even then that I had lyme.  But it took until this year to really be properly treated for it.  That is why this illness is so confusing sometimes.  I never had a positive test and so again and again I wasn't treated for lyme, and despite knowing intuitively that I felt toxic, I became doubtful myself and wondered if I had an autoimmune disease.   It has definitely been a frustrating uphill and downhill journey.

Now that I feel like the lyme situation is under control, I am doing research regarding the hormonal aspect of my health.  Having been kicked into early menopause, and having dealt with a breast cancer scare at the end of last year, I am doing all of the research I can to understand hormone replacement therapy.   I'm reading "What Your Doctor May Not Tell You about Breast Cancer," by Dr. John Lee, David Zava and Virginia Hopkins.  I'm doing as much reading as I can and then I need to make a decision about how to move forward regarding the breast cancer.  I listened back to my little digital recorder of my appointment with my oncologist, and she basically said that because of the kind of cancer I had I actually have the option to do nothing.  Meaning, not even going on Tamoxifen.  But most importantly, I have to go off of the estrogen cream.  So I'm trying to figure out how to maintain my sanity, stay as symptom free as possible and protect my health, and whether that means I have to go off of all hormone replacement or can at least stay on the progesterone cream.  Apparently, as a menopausal woman, I am still making small amounts of estrogen and even that can be a problem with estrogen receptor positive breast cancer.  My intuition tells me I need to find an integrative oncologist, if such a person exists.  It also tells me I need to find a naturopath or homeopath to help me stay healthy and strong beyond lyme and breast cancer.

After listening back to my oncologist appointment I was very depressed for days.  I finally had to face that I am 100% in menopause and having children isn't an option.  I'm 44, and while that is considered older for most pregnancies my example was that my older sister had her last child around this age, so it didn't seem that abnormal to me to think I could still have a baby.   I had to let go of the last shred of hope I was holding onto, which hurt a place inside of me so deep that I felt like if I let it out it would consume me.  I always felt I would have two girls, and I feel like I have let down two souls who were supposed to come into the world through me.   I have mourned the loss, although sometimes unexpectedly seeing a small baby will make it hurt and I will get weepy.  Now the practical side of me has emerged and I think seriously about the process of adoption.  And I am grateful that I have three beautiful children to love in my nieces and nephew. 

Monday, June 10, 2013

Happiness Pressure

When I'm depressed one thing that makes me feel even more depressed is that constant feeling of "I should be happy" or "I want to feel happy." Despite being really sick, for some reason I have this ridiculous expectation that I'm miserable because I'm not "happy" and that because happy is the exact opposite of unhappy that's what I should be striving for.  It occurred to me though that I don't put that same expectation on myself in any other area of my life.  When starting an exercise program I don't assume that after day one I'll be running a marathon.   When starting a job I don't expect I'll be an assistant and the next day CEO.  In my romantic relationships, I don't assume I'll go out on a first date and be married to the guy on date two.  And I've been sick for years, knowing that I didn't go from sick one day to well the next.  It was a long process.  So why this pressure when it comes to happiness?

I think it's partially being an American, a Westerner, generational and living in a society with a very high expectation of the success=happiness equation.  So if I'm not successful right now, whatever one's definition of that is, not working, not in a relationship, sick and living at home of course it seems I would be unhappy. 

But I discovered that if I changed what I was striving for it would create an equation I could live up to for myself.  Meaning, instead of striving so hard for happy and being more depressed when I fall short of that, I could strive just to be one click away from depressed.    My equation could look like this...not in any pain today=less depressed.  If I work this like a muscle, less depressed might eventually equal content.  That makes me happy.

Monday, May 13, 2013

10 Lyme Lessons Learned

1.  I must be my own advocate.  No one can be inside my body and fix what is broken.  I am 100% responsible for eating healthy, exercising, getting enough sleep, drinking enough water, taking my medicine, creating healthy boundaries, educating myself and getting up every day despite the pain and pushing to the next level of wellness.
2.  What it means to relax.  In my old life a day of "relaxation" was cleaning, doing laundry and a workout.   Now a day of relaxation means lying down, doing nothing, daydreaming, filling the tank and actually relaxing.
3.  The only thing I can really control on any given day is my attitude.
4.  Nobody has the one answer that is going to heal this illness for me.
5.  Pain and darkness are balanced by joy and light.
6.  Crying has it's purpose.  Throwing a tantrum at the universe has it's purpose too.
7.  When all else fails, go to bed.  It will be better the next morning.
8.  I am way more spiritually strong than I thought.
9.  Trust my intuition.  The body knows. 
10.  Everything in my life up to this point that tested me, has been trumped by lyme disease. 




Friday, April 12, 2013

Breast Cancer Follow up & I.V. Antibiotics

It took a few weeks but my body finally recovered from the lumpectomy. There was scar tissue in my armpit where the incision was made, but my body healed there. So at least in all of this illness my body can still heal itself. That was a small ray of light. I saw the geneticist and again, I am lucky in that I do not have a gene mutation and the cancer I had rated low. I do however have estrogen positive cancer, so have been advised to go off of my estrogen cream. I haven't done that yet, because I am using such a miniscule amount, and because I was feeling so sick across the board. I know that the estrogen and progesterone creams have helped my mood and general state of well being. I was also advised to start taking Tamoxifen. There have been so many decisions to make health wise in the past few years with the lyme that this cancer diagnosis still feels surreal.  My body is telling me that it was a bump in the road and there isn't going to be any more cancer so I can move on.  Maybe stupid and naive, but intuitively I feel that it was a fluke because of the condition of my body. I have to make a decision about the Tamoxifen soon, but I am exhausted by these decisions.

In the meantime, I have been on three rounds of i.v. rocephin for the lyme. We were trying to do it only on the days I was flaring, but each time I went off of it I got very sick. So, now it's i.v. rocephin every day, probably for the next two months. I am feeling really good. Symptoms that have gone away are; pounding stomach, brain fog, itchy eyes, muscle aches, nerve pain in my jaw and head, swollen glands, racing thoughts, anxiety and that deep, soul sucking fatigue. Unfortunately, I think lyme heals in layers and now that those symptoms have disappeared new ones have shown up. Most significantly my knee and elbow joints are killing me. I never had joint pain in all of this time, which many lyme patients do. Perhaps the bacteria were always lurking there, but compared to all of the other horrific symptoms that was the least of my problems. Now that the body has been freed up of those others pains, the bacteria are wreaking havoc in the joints.  And after only three weeks on the rocephin I am once again dealing with yeast, despite taking high doses of pro-biotics and anti-fungals. It feels like it never ends.  But right now I am hopeful, more hopeful than I have been in a long time.

I.V. Antibiotics, Cancer

I do my first round of i.v. rocephin. I wait until I am in a flare, the theory being that the lyme cycles in a four week cycle and that is when I'm getting sick. My left eye always gets sticky and itchy and that's how I know a flare is coming. So when it happens I go to the doctor the next day and have a photo oxidation session first, then the i.v. antibiotics. I do that for 6 days in a row. I don't get sick. We might be onto something. I don't herx either. I'm thinking I don't herx because of the photo oxidation. I have a ton of energy too, also from the photo ox. Waiting to see what happens during the next flare. We are going to double the amount of antibiotics and see what happens. But I am all in because it intuitively makes sense to me. Why would I douse my body in antibiotics when I am asymptomatic? Pulsing seems to be the right fit for me.

A few days after treatment I have a day that throws me back to how I felt in the beginning, with incapacitating depression. Depression is depressing. I am so depressed in my body that I can't function. I do everything I know of to help myself...B12 shots, do yoga, eat healthy, drink green tea and watch a funny video. But it is so heavy it crushes me. I cry all day. This is the element of this illness that is hard for those who never had it to understand. The bacteria is in the BRAIN. It messes with your emotional center. So while there are debilitating physical symptoms, some days there are emotional ones; anxiety, irritability, soul crushing depression. I think I have this bad day because of the strong treatment I just did and it is essentially a herx.

 On another note entirely... I still can't believe that I'm typing the word cancer. It is completely surreal to me. I stand by my conviction that I got a tumor in my breast because my body couldn't fight off the cancer in it's current depleted state. With severe adrenal fatigue and constant inflammation from the tick borne disease my body didn't stand a chance. I think the photo oxidation is not only helping with the bacteria, viruses and candida, but also from a cancer perspective by boosting my immune system. What a mess. In terms of cancer news I did get good news. I do not have a genetic mutation and my tumor level is a 1. So it's not aggressive. It IS estrogen receptor positive. So now there is a discussion of me going off of my estrogen cream and going on tamoxifen (a drug that blocks estrogen). This makes me really frustrated because I finally got my hormones and moods relatively stable with the estrogen and progesterone cream. It's all pretty stressful. See above paragraph on depression.

Tuesday, January 8, 2013

Lyme Disease & Breast Cancer

I have a lumpectomy in the middle of battling lyme and company.  The breast microcalcifications are benign but, within the area they take out, 2 small nodules the size of a pencil point show up.  One is benign, the other is cancer.  I am one of the lucky ones though, because they got all of it and an MRI of the breasts show I have no other calcifications or nodules in either breast.  Now I am waiting test results to tell us if the cancer is hormone related, genetic, among a bunch of other things so we know how to proceed in terms of prevention.  The lumpectomy is a piece of cake, however, I get VERY sick in the days after.  I think most healthy women don't have that reaction, but because my body is in a weakened state already, I react badly to the trauma of it. 

I can't help but wonder if the condition my body has been in for so long created an unhealthy environment that allowed cancer to grow.  I ask the breast doc about this and she says that the two aren't related.  She is really smart and I respect her enormously, so I want to agree.  But considering my journey, I can't help but think they ARE.

One thing I learn with the breast cancer situation is that breast cancer is taken very seriously and I am treated with respect, kindness and made to feel I have an entire team around me.  What I find ironic is that I have had lyme disease for four years and have been so sick I thought I would die from the pain. Yet it took me two years to get a doctor to listen to me and believe me.  With the breast cancer I have had no pain, no warning, and simply because I listened to my older sister and had my annual exam did it even show up.  I didn't have to convince the doctors it was there, I didn't have to feel like I was crazy, telling everyone "I have breast cancer!"  In fact, everything we do in the process is essentially preventative, to make sure I don't DEVELOP breast cancer down the road.

 I don't understand why lyme disease isn't taken as seriously as cancer.  Lyme kills.  It's REALLY painful.  It sucks the life out of you and it made me feel like a zombie in my own body.  It can destroy your brain.  If not diagnosed right away it wreaks havoc on all of the other body systems...my adrenals, hormones, and gut were drastically effected.  I don't know if they will ever fully recover.   I can't imagine what it would be like to have gotten lyme disease and to go to a place where not only do I NOT have to fight for my diagnosis and treatment, but I am treated kindly, and supported by an entire team of people who understand lyme and co-infections, and there are different types of docs to help me, alternative therapies, a BINDER even.  They handed me a BINDER at the breast center with everything I could possibly need to recover.  If only this had been my experience with lyme four years ago when I first got sick.  LYME DISEASE IS REAL.  WAKE UP MEDICAL COMMUNITY!!!

Thursday, January 3, 2013

Chasing the bugs

Part II

So I finally get a positive lyme test result.  Now what?  I'm still having these excruciating monthly flares...nerve pain in my face so bad it hurts to breathe air through my nostrils.  I spend about 5 days curled up, not moving, just trying to get through it.  Zomig migraine spray helps the pain, but then I pay with a rebound headache. 

I see my doctor and I've now done four UBI (ultraviolet blood irradiation) therapies.  The blood is taken out of my body (about 60ccs), then oxygen is mixed with it.  Then the blood goes through a machine that looks like a little tanning bed and is irradiated with ultraviolet rays.  This process "cleans up" the blood irradiating viral, fungal and bacterial bugs in the process.  I definitely feel better the day of and the day after.  I have much more energy and can think clearer.  I also think it's helping my sleep.  But these monthly flares aren't responding.

Now it's time to "chase the bugs."  We are doing the anti-viral Valtrex (to help with the Herpes aspect).  Many people have herpes whether it's Herpes Simplex 1 or 2 (oral or genital) or Herpes Virus 6, but their immune system is strong and keeps it in check.  Sometimes a trauma, whether it be physical illness or emotional can trigger the herpes. Types of Herpes Viruses Because I've been fighting a bacterial infection for so long my immune system is weak and I can't keep it in check anymore.   I've tested positive for oral herpes and HHV-6.  So we are going with Valtrex to start.  Then, I'm adding Olive Leaf Extract.  Then, during a flare, we are hitting it with two ultraviolet blood irradiation sessions.  If the flares don't start to cease, the big guns are coming...I.V. antibiotics.  I have tried the diet route, I have tried anti-bacterials and now I've had enough and want the bugs gone.  I want my life back.


Tuesday, November 13, 2012

Positive Lyme Test Finally! & Hormones Influence on Lyme Test Results

Part I

Ever since I first got very sick four years ago, the lyme question has haunted me.  Although my intuition told me I had it and that lyme was the silent, insidious bacteria inside of me that was keeping me from getting well, my continued negative test results made me doubt.  The negative test results also kept my doctors from treating me, except for one doctor in the beginning.  But that treatment didn't get me 100% well.  I have, at this point, probably seen more than 25 doctors.  Even my current doctor, who is amazing and treated me for babesia, never treated me for lyme.

But still, I just keep having a hunch that the current state I am in, though well, isn't good enough.  I am also one of the lucky ones who has amazing family and friends around me, "you know who you is," who keep encouraging me to listen to my intuition and to keep seeking answers.  So many don't have this support which makes them even sicker, because being denied one's own reality is maddening.

I read about Advanced Laboratory Services because another lyme patient tells me about it.  The best, most informative information has come to me mostly through other patients.  I had asked my doctor months ago to get these lab test kits and he did it right away, even though he hadn't used them with anyone else.  I am so appreciative that he is so open minded.  I don't remember why we didn't test me then, but I think we got side tracked because I asked to be given something for bartonella, thinking that I was possibly dealing with that.  Also, because I am relatively functional about two weeks out of every month now, it's easy to get distracted and forget how much pain I'm in during a flare.  Advanced Laboratory Services test also requires that one be symptomatic for the blood draw and so each time I didn't get tested during a flare, I had to wait for another one!

(A sidebar regarding lyme tests:  lyme tests are UNRELIABLE.  The two tiered standard approach with the ELISA and Western Blot are known to often return FALSE NEGATIVES.  These are the two tests I was tested with many times in the beginning.  What these tests are looking for is whether or not the patient has created antibodies to the lyme bacteria.  However, depending on the timing of the test, the patient's overall immune system and other factors, oftentimes the result will be negative.  My weakened immune system, hormonal fluctuations, adrenal fatigue and timing of the tests I did previously all contributed to negative test results.  Even Igenex, the gold standard for lyme tests which also tests for the antibodies the patient has made in response to the bacteria (not the bacteria itself), returned a negative test for me.  Advanced Laboratory Services tests for the bacteria itself.  And, I had blood taken while I was symptomatic.)

The last flare I have is incredibly painful and debilitating.  I am on the couch for days and it hurts to just breathe.  I can't eat for three days either because I am so nauseated.  This is really hard on the body too because any weight I've gained during my "healthy" days I immediately lose and thus lose strength.  I will myself to get to the doctor so he can do a blood draw while I am so sick.  And hallelujah, the test comes back POSITIVE.  I have read that a woman's menstrual cycle (hello, I have been saying this ALL ALONG) influences not only her flares but the probability of a positive or negative lyme test.  There is a great article about Dr. Marylynn Barkley, out of UC Davis who did research on hormones and how they influence the lyme testing that you can read here - Marylynn Barkley, Lyme Fluctuations, Tests, and Hormones.   If you are a woman who is experiencing painful lyme symptoms that are flaring around your period, or you feel crazy and your doctor isn't listening to you, read this.  And no, you aren't crazy.  You are sick and need to be treated.  LISTEN TO YOUR INTUITION.  I have been kicked into "early menopause" but now, because of this positive test, I can't help but wonder if I get treated and actually get better if my hormones won't regulate themselves.  And I am sending a copy of my positive lyme test to all of the doctors who told me I was wrong.

Part II - the protocol to eradicate these nasty bugs from my body...coming soon! 

Monday, October 15, 2012

Neurologist, Low Level Light Therapy, Monthly Flares & A Mammogram!

NEUROLOGIST
I go to see a neurologist because of the horrible nerve pain in my shoulders, neck and head.   He is nice enough and listens as I try to give him my history, but about half way through he checks out.  I know it's overwhelming for a doctor to hear my history because it's long and detailed, but never a good sign.   Despite having spent the last three years DETOXING my body from whatever tick borne illnesses I was dealing with, the antibiotics used to rid my body of said tick borne illnesses, heavy metals, viral infections etc, his recommendation for the headaches is botox injections.  Um, yeah, no thanks.  He does suggest an MRI, which I get, and I am happy that it is normal.

LOW INTENSITY LIGHT THERAPY 
I'm doing low intensity light therapy now.  My doctor recommended it to help heal the cells in the muscles of my shoulder and neck.  Within two sessions the severe pain I was dealing with is going away.  One thing that has drastically changed is that when I used to turn my head from side to side it would creak and crack.  I also lost the ability to tip my head back because of the muscle pain.   After a few sessions my neck doesn't hurt like that anymore and I can do yoga poses that involve moving my neck around without pain.

MONTHLY FLARES
Despite getting stronger on a daily basis, I am still having monthly flares.  I'm on progesterone and estrogen so we are not sure still if it's hormone influenced or lyme flaring in a four week cycle.  I am going to get tested at Advanced Laboratory Systems (ALS), which does a direct culture for the spirochetes, as opposed to testing the antibodies that one makes to the spirochetes (all of the other tests).  From the ALS site it says that it is best to draw blood for this test when one is symptomatic, so I have to wait until my next flare to do so. 

MAMMOGRAM
I had my first mammogram during all of this and unfortunately there were microcalcifications.  From Wikipedia - "Microcalcifications are tiny specks of mineral deposits (calcium), that can be scattered throughout the mammary gland, or occur in clusters."  Now they want to do a biopsy.  I wonder how many other women fighting tick borne illnesses have had this happen and if the chronic inflammation  from the bacterial infection contributed to these calcifications?  Menopause can also apparently bring these on, and because of this illness I have been kicked into early menopause.  None of the doctors I've asked has an answer as to what really causes these.  This seems to be a theme in my journey. :(








Wednesday, August 15, 2012

I am still in the lyme lands. Since treating babesiosis last year I have gotten better, but not well. I live in lyme limbo, well enough to get through my good days, but cycling every month with bad days of incapacitating flares of nerve pain so deep I can't breathe. The symptoms have completely changed their nature; where I had classic throbbing migraines before, I now have headaches that start in my nerves. I also now have lower rib aching, spontaneous scabs on my body, eye, scalp and all over body itching, vagus nerve pain and thus a gag reflex and hot flashes.

HORMONES
Dr. X and I are still doing a multi-pronged approach. Finally my hormones are being addressed. After a month of testing my estrogen and progesterone every week, it is determined that I am at levels so low they are almost unable to be registered. I had been asking doctors to test me every week for a month since I first got sick 3 years ago. The endocrinologist tells me I am in early menopause. I don't entirely believe this though. I think it's because of being so sick, all of the meds I've been on, and the fact that I've lost 20 lbs. because of the illness. I'm doing estrogen cream, along with the progesterone, and am to start supplementing pregnenolone (the mother of all hormones) soon.

BARTONELLA
A friend in the know tells me she thinks I have bartonella. I suspected this a few months ago because of the rib pain, but like every step in this journey I am at first in denial and then finally acceptance. It is now time to treat the bartonella. Dr. X. prescribes Cipro, but I am STILL battling candida so I can't do antibiotics again that will wreak havoc on my gut. I have upped the intake of pro-biotics and am still doing grapefruit seed extract. An herb, houttynia, is recommended to me to battle bartonella.  I try Byron White's A-BART, and do only 1 drop.  However, I react strongly two days later and stop taking it because it throws me in to a flare. 

HERPES VIRUS 6 (HHV-6)
I see an immunologist who guesses that I am having a reactivation of the Herpes Virus 6 (the virus that gives one chicken pox). I had a bad case of chicken pox when I was younger, so this makes sense. She tests me and it does come back positive but for the IgM, which indicates previous infections.  I really think the Bell's Palsy (7th cranial nerve inflammation), the Herpes Virus, hormones and tick disease are all playing off of each other, and it is just a domino effect of events.  My eyelids are inflamed sometimes and my eyes feel sticky, particularly before a flare.  I remember when I had bell's palsy my left eye felt that way.  I think either the tick borne disease, the herpes virus or both are now in the nerves in my neck and head and during a flare this is where the pain is.

ZOMIG NASAL SPRAY
I use zomig nasal spray (which is for migraines) during a flare.  It is now giving me a bad rebound headache that is almost worse then the initial headache I took it for.  Also, I have found that I can't let any of the spray run down my throat into my stomach.  It is toxic and if I let any get in my stomach it makes me almost vomit a couple of days later.  Need to find a neurologist to talk to about alternative therapies for these nerve headaches.

The journey continues. 

Friday, December 9, 2011

My Sister is Diagnosed, Adrenal Fatigue & Be Your Own Advocate

MY SISTER HAS BABESIA AND LYME
I'm in the kitchen watching my younger sister take Mepron, the yellow, mustard like medicine I took for seven months for babesia. She asks me, "will it make me sick?" Everyone responds differently to everything, so I can't tell her what will happen, and will just have to watch and see how this progresses for her. It feels surreal that she, too, has now been diagnosed with babesia and lyme. However, the silver lining is that she has, we hope, been diagnosed much earlier than I and will thus get better quicker. She has been feeling unwell for a couple of months but because she has some hormonal issues thought it might be that. Then a headache developed that she "couldn't get out from under" and weird symptoms started popping up. She was tested and came back positive for both. I am completely distressed that she has to deal with this mess now too, but grateful that she got an answer. It's always scary and disheartening to be so sick and not know why! At least the entire family has been through this drill, and everyone is now very educated about lyme and co-infections and we all know what to expect. She also seems to have a stronger immune system, so I am hopeful her body will fight hard and she will not become so intolerant to foods, environment, etc.

ADRENAL FATIGUE
It seems on my end that possibly the tick borne illness has been beaten down to manageable levels. What I seem to be dealing with now is the severe adrenal fatigue and hormonal imbalances. Since everything seems to be related my guess is that I was already heading towards adrenal fatigue from a stressed out life and the tick borne illness put me over the edge. I've been reading about adrenal fatigue and cortisol is a major factor in histamine response, food intolerances, sleep issues, and the ability to handle stress. My body is in such a sensitive state right now that any time I eat my body gets slightly inflamed and my nose itches like an allergy! Any negative information, emotion etc feel WAY bigger than they are, simply because my body can't regulate any kind of stressor. My doctor and I have decided to do a full assault on the adrenal situation so I am starting B5 and B6 vitamins as well as an adrenal support supplement. We'll see how that effects my sleep. Exhaustion continues to haunt me and is effecting my personality. I want to be happy and positive, but exhaustion this deep makes me want to weep like a baby.

ADVOCATE FOR YOURSELF
It's been a long journey and I think one major lesson has been that I must be an active participant in my own healing. I've said this before because it is such a vital part of getting well. My doctor is dealing with hundreds of patients, so I can't expect him to remember EVERY detail of my medical history. It is up to me to remind him, to do my own reading and research, to have intelligent questions to ask of him, to keep pushing and pushing for my own wellness. I must remind him I am a human being who had a life before I got sick, and that it is up to me, with his professional guidance, to do everything I can to get well. I have a couple of pictures of myself from before I got sick in my day planner, and when I was at my last appointment pulled them out and showed my doctor. He has only known me as a sick person, and I think photos like that can help a doctor see the patient as the full human being they were and want to be.

Saturday, November 5, 2011

Histamine Intolerance, Hormones, Chiropractor, Acupuncture, Herbs and More!

HISTAMINE INTOLERANCE
I took a break for a few months from everything lyme and during the summer tried to just live, sit in the sun a little, read, relax and forget about "being sick." Now that it's fall, I've had a bad flare again and so I'm back to researching and actively seeking wellness. I had never heard the phrase "histamine intolerance" until last week. My stomach has been a major continuing issue in this nightmare I've found myself in and something my doctor said to me a few weeks back really blew my mind. He said, "you don't have a stomach ache because of your headache, you have a headache because of your stomach ache. I think your problem is originating in your stomach." I have been a migraine sufferer since college and migraines always came with accompanying nausea, vomiting and horrific pain. I always assumed, and have for the past 20 years, that any issues I was having from food, my menstrual cycle, etc were originating in my head. So I was always treating the head symptoms with aspirin, advil, motrin, excedrin migraine, nasal sprays of varying kinds. These only served to make my stomach more sick later, as I tried to digest these things.

Flash forward to now, after 3 years of bacterial infection, antibiotics and more supplements and meds than I can count. Following months of babesia (bacterial infection from a tick bite) treatment, I can feel in my body that part of the equation is gone. No more night sweats, no more nightmares, no more headaches that feel like someone is squeezing my head in a vise. HOWEVER, there are lingering symptoms, the worst of which has been these flares I go through in which my stomach is twisted in knots, throbbing, and basically feeling like I have a stomach migraine. So, after that weekend flare, I googled "stomach allergy," and after going down the rabbit hole of the internet I found my way to "histamine intolerance." AHA!

"Histamine intolerance refers to a reaction to foods that have high levels of naturally occurring histamine; in contrast, during a normal allergic reaction, the body itself produces high levels of histamine in response to a food it perceives as an invader. People with histamine intolerance often have low levels of either of two enzymes -- diamine oxidase (DAO) and histamine-N-methyltransferase (HNMT) -- that bind to and metabolize histamine. In these people, histamine can build up over time and cause symptoms throughout the body." (From foodallergies.com).

I realized I was reacting to certain foods but couldn't figure out why. After reading extensively about histamine intolerance, I am certain I have become more sensitive to this, as I have to everything because of the tick borne illness battle I was fighting. Having discovered this connection I have cut out even more foods, but I have noticed that I am not getting inflammation and headaches every time I eat! Even just being aware during any given day that I don't eat more than one histamine producing food has helped. I also have found that if I do get a headachy feeling taking a vitamin c will reverse the effect. I read that vitamin c is a natural anti-histamine, so that makes sense.

HORMONES
Another connection - I have read that estrogen dominance can make women more sensitive to things they are already reacting to, as in allergies. So, it makes sense that now that my flares are occurring around ovulation they are influenced by the escalating estrogen. I've been using the progesterone cream since about June, and it is definitely helping with libido, headaches, energy, etc. My periods are finally normal again, like before I was sick. I tried testosterone cream too for a week. It made me so irritated and angry that I was taken off of it immediately. Now I know why some men can be so quick to anger. Testosterone made me have "out of body" anger and I was ready to fight with everyone.

CHIROPRACTOR & ACUPUNCTURE
I've also added seeing a chiropractor, which has helped my body in the healing process enormously. I don't understand entirely how it's working, but somehow it's re-setting my parasympathetic nervous system back to being well. My body has been in pain for so long that it was in a pain cycle it couldn't get out of. Adjusting the spine has freed up the nerves to relax, and I can feel my body starting to heal on a cellular level. I see her 2 times a week, and an acupuncturist 2 times a month. The acupuncturist has also given me chinese herbs for the sleeping issues. Still not sleeping through the night, but I think the herbs are also beginning to help my body relax. But sometimes I think I will never get an actual night's sleep again.

If you are a lyme patient and in this nightmare too, what I can share with you is that it is a process. It requires patience and diligence on your part. I have been dealing with this for three years and while I am impatient to get back to my life and really frustrated often, right now I can feel that there has been progress. So hang in there. I hope these posts help, and that you uncover another layer of healing because of the information I'm discovering!

Monday, June 6, 2011

Hormones & Tick Borne Diseases

It is amazing to me that even after Suzanne Somers' book, "Breakthrough," and Dr. Christiane Northrup's "The Wisdom of Menopause" and "Women's Bodies, Women's Wisdom" that hormones and hormone replacement remain such a mystery and somewhat taboo to doctors. After seeing so many doctors (see previous posts!), it wasn't until my current doctor, who is an integrative doc, got on board that hormone replacement came into the picture. I had been telling my sister and friends for years that part of my "fight or flight" feeling had to do not only with cortisol issues, but a progesterone deficiency as well. Finally, FINALLY, my doctor (love him!) has given me progesterone cream and I am putting it on at night. I had a very bad experience 2 years ago with Prometrium (the SYNTHETIC version of progesterone) and it is very important to know the difference. I didn't know enough then, and the doctor who was trying to help me at the time didn't know enough either. The Prometrium made me CRAZY and sick and I could only tolerate it for about 2 days. My current doc, Dr. X., tells me this is because it was synthetic and 100 mg is WAY too much for the body (or my body) to process.

The hormone connection is a very important one for women with tick borne disease. So many of the symptoms cross reference, and as a 42 year old woman who may or may not be starting peri-menopause, it has been very confusing differentiating what is hormonal and what is being caused by babesia, bartonella etc. In my own experience, it has been truly frustrating trying to discuss the hormone connection with doctors of all specialties. Many of the doctors on my journey were dismissive and couldn't or wouldn't discuss hormones with me. Even a reproductive endocrinologist I saw didn't have any suggestions about hormones or cortisol! This is an area I feel needs to be studied much more extensively in terms of healing the damage that these bacterial infections cause. Imagine going through peri-menopause or menopause (which are BAD ENOUGH), but add to that a bacterial illness that causes untold number of uncomfortable symptoms. No wonder I felt suicidal so often! My testosterone is also very low and I am now being put on testosterone cream as well. Haven't started that yet, but maybe it will help with the energy and lack of libido. I'm hoping! I'm doing B12 shots and cortisol, and STILL my energy is lagging. I'm depleted in so many ways beyond the bacterial infections, and it is so important that doctors educate themselves about how these infections further damage other systems in the body. And the hormonal connection can't be overlooked! Again, I'm not a doctor, just a patient who is going through this right now, so this is just my opinion!

I've just started the progesterone cream and will start the testosterone soon. Interested to see how this helps overall in the healing process.

Wednesday, May 25, 2011

Spiritual Home


I've decided to write about something other than lyme disease. I read in a book somewhere that the place you want to die and/or be buried is your spiritual home. That place for me is a beautiful garden called Woodstock Gardens in Inistioge, Ireland.

In 2001 I have a dream...I am following a 3 legged dog through an ornate, precisely designed English garden. Then we are walking through the soft underbrush in a dense forest. Everything around us gets very very quiet. All I can hear is the muted crunch of our feet on the moss underneath. Then, we burst through the underbrush into a vast, open space. On two sides, running parallel to each other are enormous trees, their branches touching at the top, creating a massive tree cathedral in the center of the forest. In the profound silence of the dream I know I am in the presence of the source of all things, and I fall to my knees and begin sobbing.

In 2004 I move to Los Angeles and my friend Heather introduces me to my future roommate and soul sistah Samantha. Within one of our first meetings we decide we will be going to Ireland together. In November of 2004 Samantha and I do just that. I tell her about my dream, and that I always thought the forest from the dream was not in the United States but maybe England. One day towards the end of our trip we decide to have no plans and let Ireland show us the way. We go to Nicholas Mosse, the beautiful pottery maker, and while there ask the salesclerk where we should go for lunch. She tells us to go down the road to the "Circle of Friends" restaurant. She thinks we will enjoy it because it's named after the movie. We do just that and find ourselves in the lovely town of Inistioge. The owner of the restaurant chats with us and suggests we go for a walk in the woods across the road after lunch. He says, "there's a lovely 12th century ruin up there to see."

We cross the road and begin our ascent up into the hills. It is late afternoon and the sun is beginning to get lower in the sky, but casting that honeyed, magic hour light down on us. The path we are on is bordered by trees and there is something in the air that begins to feel familiar to me. We reach the old tower and take pictures, enjoying the view of the valley below. On our way back, Samantha takes a picture of me under the trees, and I say to her, "the air here feels like my dream." She keeps being intuitively pulled further up the hill, towards sheep meadows that are at the top. I follow her and we get stopped by a fence we can't get over. We go back and make our way to the road and the car. But Sam says, "I really feel like we need to go drive to the top, the owner of the restaurant said there are gardens up there." It's about 4:00 by this time, and getting colder, but we decide to do it.

I'm driving and navigating the narrow road, houses clustered right up against it. I am taking a turn and suddenly a dog is in front of our car and I slam on the brakes. The dog looks me in the eye, and then turns and limps away off to the side. I glance at it, and then Samantha clamps her hand down on my wrist and says, "that dog has 3 legs." The dream. She says, "we HAVE to go to the top now!" All of my cells are on intuitive high alert as we drive up, up, up to the top of this hill. At the top we come to a stone entrance with marble dog heads on each side. We drive through and wind down a dirt road, through sheep meadows, and cows grazing. The sun is still a soft, sweet light in the fields, almost guiding our way. At the end, we come to a parking lot, "Woodstock Gardens," so we park and get out. Samantha practically jumps out of the car, my own personal divining rod and says, "this way, it's this way." She runs ahead of me and I am stopped by a park guide who hands me a map and simply says, "don't get lost."

There is a stone wall in front of me and I jump over it. I find myself standing in the outlines of what used to be the English garden of this manor house. No flowers are here anymore, but I can see the outline of what the garden used to look like. Samantha is ahead of me now, so I hurry to catch up to her. Something is telling her "this way, "that way," so I follow. She leads me to an area of massive redwood trees. I have to step down about 3 feet into the shade of the trees, and when I do, I start to sob uncontrollably. Samantha says, "what is it?? I say, "it's here, the forest, I'm here, but it wasn't red wood trees in my dream. It's somewhere close though. I can hear it." I leave her, my own intuition kicking in, and am guided by something completely outside myself. I aim for short grasses and trees, beckoning me with dappled sunlight. When I get into this area everything gets very quiet but for the pulsing of my own heart. My feet start to move of their own accord. I am being drawn to something that not even my mind has caught up to yet. And then I see it.

Through the small trees I'm walking in, I start to see large tree trunks, many of them, lined up in a row, in a pattern, making sense. My heart starts to beat faster and I can barely breathe. I burst out of the underbrush I've been walking through and I am standing on a path that is in the exact center of a massive tree cathedral. There are 40 300 foot pine trees on either side of this path, their branches touching at the top. It is almost 3 football fields long. As the sun sets and day turns to night, the air in-between the trees feels alive with energy. I have the strange sensation that if I were to reach my hand out, it would be touched by someone from the other side. I am humbled and awed because I know something far bigger than myself is in control here. And yet I feel safe, at peace and like my soul is finally home. I feel the full weight of my human exhaustion, and that here in this place my soul is free.

I have told this story to people and they often ask the same question: what do you think it all meant? I used to answer that what it meant for me is to understand there are bigger forces at work in the universe and I just need to let go, trust, and let it happen. But after being ill for 3 years and facing my own mortality it has come to mean much more than that. In my times of darkness in this journey, a place my heart goes to is the forest. Just remembering the smell of it, the profound silence and the wisdom of the old trees there, calms me. Mortality has taken on a new meaning; I take comfort in knowing when it happens, my soul will return to my forest and finally, truly, be home.

Monday, May 9, 2011

May - Lyme Disease Awareness Month


It's Mother's Day and I'm at my sister's new house in the great, big back yard, with my family all around me. I'm feeling the best I've felt in a long time, despite having a bad candida infection (yeast overgrowth) now that I must battle. And there are still symptoms every day - Mepron (one of the meds for the babesia infection I have) makes me have nightmares, hurts my stomach, I am still fatigued, I can feel my muscles hurting under my skin, etc. However, my good days are getting better, and that's something. It's a stunningly beautiful day here in Philly, the kind of May day that makes me feel grateful to be alive. The sun is glorious, it's a perfect 65 degrees, no humidity, and flowers have burst into color everywhere. We are in my sister's backyard before dinner, and I'm having an easy lacrosse catch with my niece. Everyone is laughing and enjoying the day. But in the back of my mind, I keep thinking that I shouldn't be standing in the grass. I keep looking at the woods that surround her house, and the place where the lawn meets the trees, the places ticks like to live waiting for a host (humans!) to walk by so they can jump on. I feel slightly uneasy and it makes me mad. I was always an adventurous person who liked to try new things and get in the middle of the action. Now, I just want to put down the lacrosse stick and go sit on the deck where I feel more safe. What a bummer.

Lyme disease and co-infections are no joke. I've been sick now going on 3 years, which to some lyme patients is nothing at all. I know lymies who have been infected for 15 years without knowing what the cause of their misery was. When I was healthy and had never experienced debilitating illness before, I just didn't care about what someone was going through if they were ill. Well, it wasn't that I didn't care, I just didn't KNOW. I had no experience in that arena in my life to commiserate or be compassionate about what it is like to be that sick. So imagine...take the worst illness you've ever experienced, I'm talking so sick you can't get out of bed, fever, vomiting whatever. Ok, your WORST hangover. Now multiply the pain by about 10, and then imagine you have that level of pain every day for YEARS. Oh, and the doctors you see for this pain tell you your crazy, and that they don't know what's wrong with you. Yeah. That's what it feels like to be a lyme patient.

So, what is my point? As May is lyme disease awareness month; check in with your lyme friends, be diligent about checking yourself and your children for ticks, if you see a tick on you, SAVE IT, get your butt to the doctor immediately, get on anti-biotics immediately and don't screw around. And if you are a lymie; be kind to yourself, forgive your body, know that it will get better, watch a funny movie, keep negativity out of your life, treat your body like a temple, get enough sleep, eat only healthy foods that will heal your body, and most importantly TRUST YOUR INTUITION.

P.S. - my sister calls me when I get home from our Mother's Day gathering. She had found a tick in her bed earlier when she woke up from a nap and she has a perfect, round, mark on her collarbone. She is going to the doctor tomorrow.

Saturday, April 9, 2011

Dear Doctors I have seen in the past 3 years

Dear Doctor-
You are receiving this letter because you treated me sometime between 2008 and 2011.  This letter is not to place blame or find fault with anyone, but simply to show the extensive number of doctors a lyme patient must go to before they get a diagnosis.  This letter will also hopefully inspire each of you to learn more about the disease, and to thus be better educated and far more open minded when a patient presents with the symptoms that I did.

The following are the doctors I have seen in the past three years;
1. General Practitioner, Los Angeles - Treated me for the "flu" 3 different times, gave me anti-nausea medicine and Advil
2. ER in Hospital in Los Angeles - Given morphine for the pain, told to see a rheumatologist - X-ray, Cat Scan - all normal
3. Rheumatologist, L.A. - Diagnosed me with a "lupus like" autoimmune disease, fibromyalgia - Did a lyme Western Blot (because I asked) with a negative result.  Put me on meds for lupus and fibro, which made me feel worse.  
4. Neurologist, L.A. - I presented with Bell's Palsy (facial paralysis) of the left side of the face - My roommate (who was with me) and I asked if it could be lyme disease.  He said, "no." Put me on steroids and anti-virals. I later learned that steroids can effect the outcome of a lyme test and aren't recommended when one has lyme.

I was so debilitated by the illness at this point that I had to move home with my parents in Philadelphia, PA, putting on hold the acting career I was pursuing.

5. Rheumatologist - Told me I had UCTD (undifferentiated connective tissue disease).  Told me he did believe me when I said I was sick, but that he didn't know what it was.
6. Infectious Disease Doc -  Tested me with the lyme Western Blot which was negative.  I told him my symptoms were cycling monthly and he said, "in all of my years of practice I have never heard of that." Although I have read in numerous places that the lyme bacteria can flare in 4 week cycles, from Dr. Burrascano's 2008 Lyme Disease Guidelines - "It has been observed that symptoms will flare in cycles every four weeks.  It is thought that this reflects the organism’s cell cycle, with the growth phase occurring once per month (intermittent growth is common in Borrelia species)."
7. Rheumatologist - Diagnosed me with fibromyalgia, depression.  Prescribed Zoloft, a therapist and a sleep study.  When I told him my symptoms seemed to get worse during menses, he ended the consultation and made me feel like it was "all in my head."
8.  Therapist - sent to by above doctor - I told her something is very wrong, that I am really sick and trying to cope.  I also told her that I am having suicidal thoughts and can't sleep.  She says to me on my second appointment - "You look fine.  So...why are you here?"
9. Dr. K - Endocrinologist - tested me for hormonal imbalances, including cortisol.  Everything seemed to be normal.
10. General Practitioner - Lyme Endemic area in MD - when I asked him about co-infections he didn't know what they were (!) so I chose not to be tested by him and not to go back to him
11. LLMD - Tested me at Quest for borrelia burgdorferi, the lyme bacteria.  All tests negative. Treated me based on a clinical diagnosis with 2 months doxycycline.  Two weeks into treatment symptoms were resolving, I started sleeping through the night for the first time in a year.  Took me off after 2 months to see what might happen, after a month off of the doxy, symptoms began to creep back in and I couldn't sleep.  Put me on 2 more months and I began to get better again.  Took me off AGAIN because my white blood cell count was low and suggested that I see a rheumatologist.  I felt like I was going in circles.  I didn't go back because he didn't address co-infections and offered no complimentary treatment in terms of combating yeast.  Also no supplements or vitamins to help my immune system.
12. Hematologist - Doc #11 sends me here to get my white blood cell count checked.
13. LLMD - Did Western Blot and PCR testing of lyme and co-infections at MDL - tested me weekly for approximately 2 months - all tests negative - got a positive test result for Q Fever - (which he told me could be a false positive) and was given no meds or protocol to go forward but was still very sick.  My instinct told me yet again that I needed to get another opinion.
14. Gynecologist - Was afraid I had another cyst, this doctor assured me I didn't and did a standard gyno exam.   I asked if he could check my hormone levels (I still thought my monthly flares could be hormone/menstrual related) and he said they didn't do that.
15. Allergist - Examined me and checked that I had no polyps as I was still getting severe headaches, and thought they might be allergy related.
16. Allergist - Dr. #15's colleague, did a skin scratch allergy test on me.  No "allergies."
17. Gynecologist/Holistic - Diagnosed me with leaky gut, adrenal gland fatigue - put me on many supplements but after about 2 months, I was still very sick.
18. Integrative Medicine Specialist/LLMD - Tested through Igenex, got a positive babesiosis (co-infection from a tick bite) test.  I also had a cortisol test which showed that I have a very low level of cortisol in my body.  Toxins that showed up were high on lead and mercury.  Also shown to have food intolerances.  Treating me for babesiosis first, severe adrenal fatigue, also doing complimentary /supplemental treatment such as iv vitamin drips, b12 shots, diet and hormone therapy.  Beyond this he will determine if I have the co-infection bartonella and if, indeed, I am positive for borrelia (the lyme bacteria).

It is 4 months into my babesiosis treatment.  I haven't had a headache for the last month, which is the first 30 day period I've had headache free in about 3 years.

It is my hope that doctors will start to take lyme disease and co-infections seriously, and to make them standard tests that are run along with all of the other tests that they do when first seeing a patient.   Imagine if, when I went to doctor number one on this list, my general practitioner in Los Angeles, he was educated about the disease and had thought to test me.  That was THREE years ago.  If I had been treated then it would have been the difference between the cost for a few bottles of doxycycline and antibiotics for babesiosis, compared to the upwards of $60,000 I have now spent getting myself well.  As the years went by, I fell further and further down the rabbit hole of illness, so that now it is an enormous undertaking just getting myself back to functioning.  I have also not been able to work, and so the career that I was building has completely lost momentum. 

Yes, I am aware that most think lyme disease is an "East Coast" disease, and so being in Los Angeles made it even more difficult for me to be tested.  That is a fallacy though as lyme disease and co-infections are absolutely present in California, across the United States and around the world.  Many doctors on the East Coast and elsewhere don't have lyme disease on the mind, and so patients continue to fall through the cracks, only to follow the list of doctors that I had to go through.  What a waste of time, money, and life. 

It is one thing to be so sick you can't get out of bed and to slowly feel yourself slipping away.  It is another thing entirely to then have to fight the very people you are depending on to diagnose you. Please educate yourselves about lyme and co-infections so others coming to you now won't have to suffer the way I and so many others have.

Addendum #1 - I wrote the above in 2011.  It is now 2013.  It seems the babesia protocol kicked that bacteria into remission and I haven't had a recurrence of those particular set of symptoms (night sweats, nightmares, band around my head headaches).  I did test positive for lyme through Advanced Laboratory Services (ALS).  I was tested while I was symptomatic using their culture test.  I am now being treated with I.V. Rocephin and not only has my clear headed thinking come back, but many symptoms have resolved; swollen glands, throbbing nerve pain in my head, muscle aches, throbbing stomach, gi distress, although I still have word recall issues and sometimes reverse words in a sentence.   I am finally gaining weight (I lost 20 lbs while sick and couldn't keep weight on) and many of the food intolerances I had are resolving.  I even have days now where I think about my future, because I can hope I actually have one.


Monday, March 7, 2011

Phone Trees & Paperwork will do me in before Lyme

I just spent the last few days very sick again in a bad flare. I'm talking in bed for 2 days, unable to move. My stomach so sick I couldn't eat for 2 days. My body hurt so much in every muscle and crevice I was walking hunched over when I finally got up.

Today I am ok, the flare has passed. I just got off the phone with my health insurance company. I had to switch over from Old Insurance to New Insurance because my Cobra ended. The transition may be more painful than the actual illness I'm dealing with. I have spoken to New Insurance in the past few weeks at least 2 times a week. Here is how this transition went:

1. I couldn't get new insurance company to send me the application for the insurance I was applying for - had to call them 3 times to get it mailed to me because they said I had to fill out a hard copy and I couldn't do it on-line (mind you I was running out of time b/c my Cobra was about to end and I cannot have a lapse in coverage b/c of this illness)
2. When I called the third time the operator apologized and said I could do it on-line (?) which I did and she personally took it to the department that would approve it (ok, I'll give an A+ for being helpful here)
3. I got the application I had been asking for in the mail AFTER I'd already applied and been accepted, then I got the SAME application 2 more times in the mail
4. They sent me the bill for the policy they approved me for before they sent me the actual information for the policy
5. I've been incorrectly invoiced already (!?) (I've only had their coverage for 2 months)
6. After my first check was IMMEDIATELY cashed, they continued to send me policy information for policies that didn't apply to me
7. When they did send me my policy information, it was the wrong packet, almost causing me to have a heart attack because it said I have pre-existing condition exclusions (even though that was the whole point of the exorbitant fee I am paying so that wouldn't apply to me)
8. They finally sent me my ID cards, and they are for the wrong policy
9. In the middle of all of this I hadn't had a chance to go to my pharmacy and change over my insurance info. (which I couldn't do anyway because I had the WRONG INFORMATION) and I got horribly sick, desperately needed some medicine only to find out that that particular medicine needs a PRE APPROVAL from my doctor before I can get it.

My friend and I say that there are always bumps in the road when switching from one system to another. But seriously, what exactly about this "system" is working?

This is completely unacceptable to me. What's even more annoying is that despite having just gotten off of the phone with them and feeling like I've worked everything out, I know for a fact that I will be on the phone with them many more times. I already feel like I've had to let go of control in my illness (see previous post!), and now insurance has me by the balls. How is it ok to be this sick and have to deal with this level of incompetence (I was going to say bullshit but wanted to take the high road) on a daily basis? Why aren't we all protesting more?

I have now probably spent at least a total of 1 day of my life waiting on hold for someone at new insurance to pick up. I think for every minute I have been on hold with them it should be exchanged for a reduction in my premium. And for every piece of paper that I have received in the mail that is incorrect, I should be able to get a price reduction on my prescriptions. Or at least a vanishing deductible!!!

Add in the amount of time spent trying to decipher the disability application process and all I'm asking is that it should count towards at least a day of reprieve from being sick. Are you listening universe?

Saturday, March 5, 2011

Lyme Rehabilitates the Control Freak in Me

When I was little, my Mom used to say I was a "sock and belt roller." Meaning, I was so organized I literally would roll my socks and belts in a drawer so they were all lined up in a row. I made my bed before I went to school. I liked to make "to do" lists. Order made me feel like I was in control. As an adult, that translated to my own apartment, work environment, car etc. Everything needed to be in it's place and orderly. I liked to count things and I liked things to be even. Odd numbers bothered me. If I walked into my kitchen and certain things were out on the counters, I had to put them away to feel like things were "right." Can you say, obsessive compulsive? It never occurred to me that this was over the top, until my roommate in L.A. said it was stressful to live in that environment, because EVERYTHING had to be in it's place. Only then was I able to step outside of myself and see my obsessive need to keep things in order, and laugh at myself because of it. Even my desk at work was like that...every paper where it should be, things neat and clean and orderly. My appearance too...I ironed shirts and pants before work, never allowing myself to leave the house with a wrinkle. Even when I didn't feel well I put on my make-up and tried to present a perfect front.

Up until now, I had never come up against anything in my life that I couldn't organize and order into some kind of sense. And then lyme disease arrived. My whole life I have been about setting a goal and laying out the steps to achieve it, a very orderly system. I keep trying to "organize my illness" and it is almost laughable, because lyme disease will just not jump into line. It is teaching me that not everything has to be rolled up neatly in a row. That sometimes it's really messy, that I'm really messy, that things are ugly and imperfect and that even if I organized the hell out of everything around me, that the illness is going to be there anyway. So I've learned that I can let things go sometimes, that it doesn't matter if everything is clean, shiny and orderly. That I can let myself be ugly, messy and out of control and that I can still be lovable that way. Most importantly that I can still love myself that way. That I don't need the counters to be clean and things to be put away to feel safe. That what I need is my own forgiveness, love and compassion.

Wednesday, February 2, 2011

Long Term Antibiotic Treatment

I am cautiously optimistic. I have been on a mix of hydrocortisone, mepron and zithromax for about 2 months, and dare I say I am feeling better!? I have been in this place twice before, so I have learned my lesson about getting excited that I am on an upswing. However, this is exactly the case. Somewhere around week 5 or 6 I start feeling changes for the better in my body. The constant muscle ache and burning starts to ease. The nightmares are gone, as are the night sweats. I had been cycling every 30 days with "flares," in which I was vomiting, bed ridden with severe muscle aches, bad headaches, fever, sweats, chills, etc. I have just reached the 30 day mark again and alas, no severe symptoms. Granted, I also had 2 vitamin drips within a week to help thwart the flare I anticipated was coming, but so far so good.

Seeing that it took almost 5 to 6 weeks for me to "turn the corner," it is maddening to continue to read articles that vilify doctors who treat lyme and/or co-infection patients with long term antibiotics. If I had been given only 21 to 28 days of this hydrocortisone/mepron/zithromax mix, I would not have gotten to this place of wellness I am in. At about 3 weeks in, I was as sick as I could be. I am tired of reading literature that says long term antibiotics are damaging and to treat beyond a short term course is fool hardly. I am living it right now, and from personal experience I was not getting well until just recently. I also know from being in this position twice before that stopping the antibiotics too quickly will only result in a relapse. This time, I am in it for the long haul until I get through an entire month without a sick day. Getting "well" is relative though. I am nowhere yet near the person I was before I got sick. I don't know if I ever will be. When I say well, what that means is I am not lying in bed or on the couch in a suicidal depression from the pain and fatigue.

Also, this time I feel like I am finally getting the supplemental treatment I should have gotten a year ago. The adrenal fatigue is being addressed and I am taking supplements & vitamins that are helping counteract all of this medicine. Meaning, things like probiotics and anti-candida supplements. Which, by the way, I found to be necessary even when on a short course of antibiotics in the past say, for a sinus infection. The supplements, hydrocortisone etc were the missing ingredient I think the last time I was on antibiotics and also partially why I relapsed. My cortisol levels are very low and because of that my immune system just couldn't get kick started and take over when the antibiotics were out of my system. I finally feel like I have the right doctor and am on the proper path. Hallelujah! But we shall see...

As the symptoms start to lift again and I emerge from the grayness, I start to question my future and who I will be. I know I can't go back to the person I was before I got sick; working full time, auditioning, working out like a maniac, a busy social life and stress. I know for certain that stress will not physically be allowed to be in my life because it will hurt my body. But my mind can't help but start to formulate a plan for "when I am well," which of course begins to make me feel anxious. So somehow I will have to create a life that allows me to live joyfully and leaves space for healthful living. I don't want to do all of this work to get well, only to fall back into old habits thus creating an environment in my body that allows illness to invade again!

Tuesday, January 18, 2011

How to Support Your Lyme Patient

A few thoughts for those who have a lyme patient in their lives.

Is it a lot to ask a caregiver to know the details of a loved one's illness? I don't think so. I totally take into account and respect that those who aren't sick have lives of their own; jobs, daily stress and their own every day aches, pains, cold, flus, etc. However, small gestures, even just knowing the lingo of a loved one's illness makes them feel respected and cared for.

1. Weight - Don't comment on their weight, whether they've gained or lost. For some reason people think it's okay to say, "oh my gosh, you're SO skinny!" Despite our society's screwed up notion that "skinny = beautiful/healthy" no one would ever say that to a cancer patient. Depending on the person, lyme can make one gain or lose weight, so it's best to just not comment at all. Some people may have lost weight and perhaps "look better," but you can bet they don't feel good at all.

2. Sleep- lyme manifests in different people in different ways; some want to sleep all the time and some can't sleep AT ALL. It doesn't help to make comments about their sleeping all the time. This is not exactly how they would want it either. Unfortunately, the wanting to sleep all the time is a symptom of the illness, so allow the patient the ability to deal with this symptom with no pressure. It is NOT because they are lazy, it is because they are very sick and they literally can't stay awake. On the other end, I can't emphasize enough how prolonged sleep deprivation effects one's personality. It is maddening to be exhausted to your very core, but unable to get a good night's sleep. Be patient with your lymie, you would be cranky too if you hadn't gotten a good night's sleep in 2 or more years.

3. Noise, smells, lights - Lyme can effect the nervous system and the immune system, and thus a lyme patient can become extremely sensitive to noise, smells and bright lights. I now can't stand the smell of green beans or peas. They are totally overwhelming to me and make me nauseous. Being in a crowded place with a lot of people/noise/bright lights is painful. Strong perfume, cleaners, paint etc give me a headache almost immediately. Because of the sleep issues loud noises while I'm falling asleep, during the night, or in the morning sound even louder to me than others. Something that wouldn't wake a normal person up during the night will wake me up. The sleep deprivation is beyond what a normal person thinks of as having "not gotten a good night's sleep." So any help you can give to make the environment for the lyme person odor free, noise free etc helps them enormously.

4. Irritability - Constant pain, lack of sleep, nervous system aggravation - these can all lead to serious irritability and a short temper. I am still struggling with this. I can feel that I am irritable because I am exhausted on a level so deep that it's hard not to just burst out crying most of the time. Remember that your lyme patient is dealing with a lot of different pains etc going on in their body, and then they don't get sleep at all. If you notice irritability etc try to be patient and remember that it is the illness, and not your loved one. Unless of course they were irritable BEFORE lyme disease, and then you're on your own. :)

5. Memory - Lyme can severely affect memory and speech - when I was first very sick I often stuttered, couldn't think of a word, reversed letters at the beginning of a word, and couldn't remember what I was going to say - that has gotten better but I now still have bad short term memory and I can't do anything too detailed yet. My boyfriend has had to hear the same story over and over, and the scary part for me is I have no recollection of having told him before. He says, "honey, you already told me that." Very frustrating for the lymie. So, if you have a lymie in your life, and they keep telling you the same story over and over, or are talking to you and can't remember their thought or word, be patient and understanding.

6. Diet - Diet plays a major part in healing for a lyme patient - yes, it can be tiring and annoying to deal with someone in your life who now can't go out to restaurants, drink alcohol, participate in the social activity of eating. Just think how your lymie feels! It is very non-productive and destructive for the caretaker of a lyme patient to be resistant about the diet changes the lyme patient must make. The lymie is already exhausted, scared and sick, and doesn't have the energy to not only think about and prepare healthy food, but to also argue with you about why they need to eat this way. Anything you can do to encourage them to avoid sugar, unhealthy foods, alcohol etc is helpful. Also, whatever help you can give to prepare healthy meals, freeze things for them to heat up, help them find foods they CAN eat when you go out. All of this serves to help the lymie towards healing.

7. Medicine - Lyme patients often end up taking a LOT of medicine and supplements. For me, it feels like I take medicine ALL day. Sometimes, all you need to say to your lymie is, "did you take your medicine today?" "Do you need me to pick up anything for you at the drugstore?" Also, some lyme patients are in a very bad "lyme fog," and just the simple task of sorting all of these meds/supplements into a pill box could be daunting. Taking a 1/2 hour to help them sort their pills for the week actually reduces their stress and will aid in them remembering to take their meds. Also, for me, each time a new medicine is added there is always an adjustment period. So, if your lymie seems particularly irritable, unwell and/or you notice they are really struggling, it could be they are adjusting to the medicine and/or having a herx. Make sure you know what a Jarisch-Herxheimer response is when your lymie starts their antibiotics.

8. Pain - Lyme disease can be painful and uncomfortable. When I go through a "flare," I am extremely uncomfortable in my body. It hurts to lie on the couch doing nothing. Even on a "good" day, my muscles burn and twitch. As a lyme patient I actually got used to it, and what would possibly considered unbearable for others, a lyme patient must learn to tolerate on a daily basis while they get diagnosed and wait for antibiotics to do their job. Think about it; there are a myriad of symptoms going on in the lyme patient's body at any given time - headache, inflammation of the muscles and joints, nausea, fever, sweats, chills, dizziness, muscles twitches, exhaustion etc. Again, late stage lyme / chronic lyme can manifest in different ways for everyone, but it is still painful! And, once they go on antibiotics they may experience a severe flare of symptoms in reaction to the medicine, so now they are dealing with even more pain. That said, anything to make their environment more comfortable is helpful. For me, hot baths with magnesium really help. Offer to run the water for them and prepare a bath. If they are nauseas, offer to make something to eat that will help quell the nausea. Even just asking, "what can I do to help you feel more comfortable?" goes a long way.

9. Paperwork - HELP!!! - Disability/insurance/doctor's bills/monthly bills etc - I can't emphasize enough how overwhelming it is to try to navigate the maze that is disability and insurance when one has lyme. Not only is a lymie's brain in a complete fog, but again, there is so much physical discomfort it can be hard to just sit at a desk, let alone comprehend confusing information. The disability process can be slow and frustrating, and if the lymie is now unemployed and uninsured that is a whole other paperwork nightmare to deal with. The lyme patient is going to need help! Seriously, who has the mental wherewithal to combat government red tape when one is well, let alone suffering from a debilitating and exhausting illness? Help the lyme patient organize all of their paperwork, look at things on-line with them, help them navigate disability and insurance. Trust me, you will get an education too that you might need yourself some day!

10. Advocate - Lyme is a hot mess. It is not a cut and dry disease where you go to the doc, he tells you what's wrong, you get the medicine, you get better. Well, yes, that can happen if you are lucky enough to get a tick bite, SEE IT, get a rash, get tested in a timely manner and actually get a positive test. In this scenario a few weeks of antibiotics and you are fine.
HOWEVER, that is not who I am talking about here. I am talking about myself, and the rest of the lyme patients who went misdiagnosed or undiagnosed for years, and now have late stage lyme. Lyme is a disease that not only the patient but the caregivers/support team MUST EDUCATE THEMSELVES ABOUT. It is enormously helpful to a lyme patient to have 1 or 2 friends or family members to be on their team, and go to doctor appointments with them! When I first started going to doctors I was so sick it hurt to even sit on the exam table, let alone take in whatever the doctor was saying. I am so grateful I always had either a friend or family member with me. There is an enormous amount of information for a lyme patient to take in. Particularly in the beginning, if you are fighting to get diagnosed. So, if you have a lymie in your life, take the time to read the literature about lyme disease, watch the film, "Under Our Skin," read "Cure Unknown," by Pamela Weintraub, go to the doctor's appointments with him/her, be invested in the person's healing. It will go a long way to getting the person you loved before illness back!

Disclaimer: I am not a doctor. I am a lyme patient and this information is based on my own experience, please do not take this as medical advice. If you or a loved one have or suspect you have lyme disease, please consult a Lyme Literate Doctor for any questions you have.