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.