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.

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. 

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!

Hyperbaric Oxygen Chamber, Airplane Travel and Lyme Disease

A hyperbaric oxygen chamber is an alternative method I have read about that is sometimes used to help alleviate lyme disease symptoms. From How Stuff Works, "hyperbaric oxygen therapy uses a special chamber, sometimes called a pressure chamber, to allow a person to get high levels of oxygen in the blood. This means that the air inside the pressurized chamber is typically 2 1/2 times greater than normal atmospheric pressure. This leads to your blood carrying larger amounts of oxygen, and bringing this oxygen to organs and tissues in the body. By doing so, wounds, particularly infected wounds, can heal more readily." In terms of lyme disease, often people have a "herx," in which their symptoms are exacerbated following treatment. As the bacteria die off the immune system is aggravated and thus the symptoms worsen before they get better.

My theory is this...every time I was on an airplane in the last couple years I got very sick about 1 or 2 days after traveling. No matter where I was leaving from or going to, I got sick upon arrival. I traveled many times between Philadelphia, Los Angeles and Ireland and usually spent a day or two after arrival vomiting, headachy, and in bed with a very bad, painful, flu-like illness all over. I forever thought this was because I had a "weakened" immune system, and I assumed each time I traveled I had caught something on the plane. However, in retrospect, I had the same symptoms every time, and now knowing that I have lyme disease, I wonder if being on an airplane, with the cabin pressure changes when ascending and descending my lyme disease was somehow effected? Could it be that if it is correct that hyperbaric oxygen chamber treatment can effect the lyme spirochetes in one's system, that the pressure changes in an airplane's cabin could do the same?

It just seems odd to me that I never felt sick when traveling by car, or train or changing locations that didn't involve an airplane. I used to travel often by airplane before I was aware of any "lyme disease" in my life, and never got sick like that when I traveled. In fact, I often traveled for TV production which involved high amounts of stress, little sleep and long work days. I still didn't get sick like I have in the recent past. So, I'm just putting it out there that I feel like there could be some correlation between hyperbaric pressure chambers and how they cause lyme spirochetes to react in the body and airplane travel. Something to think about.