Progress Report: May 2015

It’s been a while since I’ve posted anything, and that’s mostly because my health kept getting worse since my last post. I spent nearly all of 2014 dutifully following my doctor’s orders for treating Lyme disease, babesia, and bartonella, and yet by the end of 2014 I was feeling worse than ever. I took two weeks off from work in December and spent nearly the entire time in bed. So, I started looking for more answers.

Methylation Dysfunction

Towards the end of 2014, my chiropractor had suggested I get a 23andme test done. While 23andme is now barred from giving you health-related advice based on your DNA, they still can give you the raw data you need to get the health-related information. It takes several weeks to get the results back, so I decided to go ahead and do it, figuring that either I’ll be on a better track when the results arrive or I’ll be able to use it. My chiropractor suspected I had some methylation dysfunction that was contributing to how lousy I was feeling.

Methylation is a complex process that the body uses to transform dietary B vitamins into other forms, and as such, contributes to a large number of bodily functions. The most notable and important as it relates to Lyme disease are detoxification and energy production. Poor methylation means both of these functions can be sluggish and add to the other symptoms of Lyme disease. (There’s some anecdotal research linking the hardest-to-cure Lyme patients with methylation dysfunction.)

When I got the results back, I plugged them into several online reports for health information:

• Genetic Genie — provides a free analysis of a lot of health-related genetic markers. It gives some brief overviews of risk factors, but most of it isn’t actionable information. Really just flags a subset of SNPs for potential risk factors.
• Know Your Genetics — also a free analysis, but you have to manually plug in your genetic information. This site is run by Dr. Amy Yasko, who is one of the leading authorities on methylation dysfunction and its relationship to medical conditions. The analysis is thorough and recommends supplements to treat various risk factors. Note that Yasko sells these supplements directly, so the treatment recommendations aren’t exactly unbiased. However, I did find some of the supplements useful, so as always, double-check for yourself before investing money into anything.
• MTHFR Support — this analysis costs $30 and is incredibly detailed, covering far more SNPs than the two other options. However, it only flags risk SNPs and gives absolutely no overview or guidance as to the types of problems associated with them aside from generic categories. Realistically, you can probably get by with the other two reports.

By the time I got the 23andme data back and had generated the reports, I was convinced that detoxification problems were my main issue. The treatment of Lyme releases a lot of toxins, and as my treatment went on, I just kept feeling worse. I had headaches, bodyaches, nausea, and general flu-like symptoms all the time. The results of my genetic evaluation showed that I did, indeed, have genetic risk for sluggish methylation as well as sluggish liver detoxification. (Note: Genetic markers do not indicate with 100% certainty that you have a particular problem, they only indicate probability of having a particular problem.)

My next step was finding a doctor who knew something about methylation, as my doctor had indicated she really didn’t know anything about it. I ended up with two names, an MD and an ND. I decided I’d make appointments with both, considering they both took several weeks to get appointments, and then I’d stick with whoever I felt was better.

With that, I bid my doctor of 2014 farewell, and she admitted that she just didn’t know what else to do to help me. I hate reaching that point with doctors…I feel like reaching out and shaking them to say, “don’t give up on me, please!” But doctors are human as well, and expecting each one to know everything is unrealistic. I told her I’d be in touch if I felt like she could help in the process.

New Doctor

I had a decent conversation with the ND, who gave me some good tips for improving detoxification and my diet. Unfortunately, I felt like most of what she advised was just incrementally better than what I was already doing. so I decided if I liked the MD, I’d stick with him. As it turns out, I really liked the MD.

(As always, I’m not sharing the names of my doctors because I don’t want to either praise or blame anyone…at least not until I’m healthy again. Doctors aren’t perfect and vilifying the ones who couldn’t help isn’t any more useful than pinning my hopes on others.)

This was the first Lyme-related appointment my mom had ever attended with me, and I warned her about what to expect. Doctors are very opinionated, and it’s best not to let any one thing they say upset you. This will be a long discussion, and I’m sure it will be upsetting at point, but try to keep it together and just ride the appointment wave. Boy was I glad I gave her that warning.

The doctor was a very get-down-to-business type, speaking quickly and asking very specific questions. At one point I actually stopped him to explain why I was coming to see him and explained about the methylation issues. I did the usual song-and-dance about my symptoms and history, and at one point he proclaimed, “so far, this doesn’t sound like Lyme disease to me.” My heart sank, and I could hear mom let out the telltale sigh that she was trying not to cry. This was the last thing I wanted to hear, that my problem was once again an undiagnosed mystery.

However, by the time we got to the end of the appointment, the doctor had changed his mind. “Your symptoms are definitely indicative of Lyme disease, and probably a few other infections.” Phew. Glad we got that out of the way. Of course, he wanted to run his own tests before starting treatment and it would take six weeks to get the results.

In the meantime, he talked to me about detoxification and diet. He explained that a lot of times people who are very sick from Lyme disease have detoxification problems and he’d like to start addressing that now. He prescribed cholestyramine, which he explained can help to bind toxins so they don’t get recirculated into the blood.

Cholestyramine is typically used to help lower cholesterol levels, but this wasn’t why he was giving it to me. He referenced the work of Dr. Shoemaker who had found cholestyramine to be effective in removing mold-related toxins from the body when taken on an empty stomach (as opposed to with food, as is the case to lower cholesterol).

He also said it’s important to stop eating carbohydrates and start eating different types of protein. He recommended having a shake every day and rotating protein powders. The one he recommended I incorporate is PurePaleo, which is isolated beef protein. It sounds gross, but actually tastes pretty good. He also recommended using hemp powder and rotating back and forth.

The shake should have good fats, so I was to rotate coconut oil, avocado oil, and flax seed oil on a daily basis, as well as rotating through different nut butters (not peanut butter). And I was to rotate through fiber as well, so flax seed, chia seed, and whatever else I could find.

As a final note, he said that sometimes the tests he orders don’t give us enough information, so he wanted to try something out-of-the-box. He recommended getting autonomic response testing (ART) done before my next visit so we could look at all the data together. ART is a form of muscle testing developed by Dr. Klinghardt and purports to be more accurate at detecting health issues than other forms of muscle testing. I was open to anything, so of course I said yes.

Autonomic Response Testing

I made an appointment with Scott Forsgren to get ART done. I’m mentioning his name because Scott is a well-known Lyme disease patient advocate who had done tireless research and writing as well as supporting patients like me. I had been introduced to Scott over email a couple of months earlier through the Lyme Light Foundation and he had been really responsive and helpful as I was trying to navigate my health. Scott himself is a Lyme disease survivor and now spends a lot of time trying to help others.

Autonomic response testing is a little strange if you’ve never done any sort of muscle testing or unconventional testing. I laid down on a table while a second person gently touched my leg. Scott then systematically went through a series of stimuli while muscle testing the second person. The theory is that the second person acts as a filter to get more accurate results. The whole test took a little less than an hour, and in that time Scott had tested me for multiple infections as well as various supplements that my body was indicating would help.

ART works by indicating what “stresses” the body, with the theory being that the body isn’t stressed by things it doesn’t know. So, if you have Lyme disease, then testing for Lyme disease would cause the body stress because it recognizes the stimuli. As such, Scott found the following:

Primary Organ Stress:

• Front of head (primary/blocking)
• Intracellular near head (primary/blocking)
• Extracellular Matrix (primary/blocking)
• Adrenals (primary/blocking)
• Spleen (primary/blocking)

Microbial Stressors:

• Viral Group (primary/blocking)
• Borrelia-like (primary/blocking)
• Bartonella-like (primary/blocking)
• Babesia-like (primary/blocking)
• Chlamydia-like (primary/blocking)
• Fungal Group (secondary/resonance)
• Parasite Group (secondary/resonance; helminth-like)
• Klebsiella-like (secondary/resonance)
• H Pylori-like (secondary/resonance)

Other Stressors:

• Sugar / Soy / Gluten / Cow Dairy (primary/blocking)
• Heavy Metals (primary/blocking)
• Chemicals (primary/blocking)
• Pesticides (primary/blocking)
• Inflammation (secondary/resonance)
• Indoor Molds / Mycotoxins (secondary/resonance)

What I found interesting is that in this nearly one-hour session, Scott was able to uncover a lot of what it took me years to discover. I had previously encountered almost everything on this list, so it was nice to get some reinforcement.

Followup Appointment

My followup appointment with the doctor started off by reviewing the medical tests he ran. He hadn’t tested for Lyme, as he believed my immunity was too suppressed to get an accurate result for that. He had done a Babesia FISH and Bartonella FISH to try and find those infections, but they had both come back negative. He also had tested me for mycoplasma, chlamydia pneumonaie, and Epstein-Barr virus. All those tests came back as “past exposure”, meaning I had antibodies but not enough to indicate active infection.

Perhaps the most interesting test he did was for the HLA-DR gene, something not covered by the 23andme testing. HLA-DR is related to the body’s ability to recognize and eliminate toxins, and there are certain factors that indicate the body is unable to do so. As it turned out, I had two markers that were problematic: one that is a general inability to recognize and eliminate toxins, and one that is specific to Lyme-related toxins. So, the doctor explained, this is probably why I’ve been feeling so sick — my body is just full of toxins that it can’t get rid of, and he doesn’t want to start treating infections until I’m getting better at detoxifying.

When we went over the ART results, the doctor said that he believed I did have Lyme, bartonella, and babesia, but that they are now hiding in my body and hard to detect with normal tests. He said that he sees this in his sickest 5–10% of patients, so even though it’s unusual, it’s not unheard of.

With that, he put together the beginnings of my new protocol.

The Protocol

The first part of the protocol consists of supplements to support drainage and detoxification:

• Cholestyramine — as previously mentioned, to bind the toxins and help eliminate them. Two scoops twice a day on an empty stomach. Nothing to eat for 2 hours before taking it and one hour after. Available only by prescription.
• Takesumi Supreme — another toxin binder. This is actually bamboo charcoal and is supposed to be an extremely potent binder of toxins. Taken immediately before the cholestyramine every day. One scoop twice a day on an empty stomach.
• Drainage Tone — a homeopathic remedy to support general drainage. 8 drops two times a day.
• Renelix — a homeopathic remedy made by Pekana and focused on detoxification of the kidneys and bladder. 4 drops two times a day. Only available through a doctor.
• Ailgeno — another Pekana homeopathic remedy for clearing the spleen of infections and toxins. 10 drops two times a day. Only available through a doctor.
• Mundiper — yet another Pekana homeopathic remedy. This one is for general drainage and detoxification. 1/2 tsp two times a day. Only available through a doctor.
• Daily walks — the doctor said that walking is important and urged me to try to walk one block each day. He said that this helps in detoxification by circulating fluids and that I’ll feel better faster if I make this a priority.

The next part is focused on building up the body:

• Energy Boost 70 — a liquid vitamin and mineral supplement. 1 ounce one time a day.
• Formula Energy Plus — an herbal remedy for supporting the adrenals and helping the body to create energy. 1 pill in the morning.

After a couple weeks of detoxification support, I was to start some remedies for attacking the infections. Both of these are from Beyond Balance and are only available through a doctor:

• IMN-R — an herbal remedy designed to treat viral infections. One drop two times a day for two weeks, then increasing one additional drop per day for another two weeks, and repeating until I’m taking 3 drops two times a day.
• MC-BAR-1 — an herbal remedy designed to treat Bartonella infection. Same doseage as IMNR.

How I’m Doing

It’s been about four weeks on the protocol and I have noticed some improvement, mostly around the flu-like symptoms that the doctor had attributed to toxic overload. The headaches, bodyaches, and nausea have really dropped off considerably, the last of which is really important because I hadn’t been eating all that much and was losing weight (I’m already too thin as it is, so this was no good). Eliminating the nausea freed me up to start eating more and I was able to gain back most of the weight I had lost. I’m still well below where I should be, but no longer in the dangerously underweight category.

My energy has still been really bad — I haven’t noticed much of a change outside of a single week where I seemed to have more energy. However, after the week was over, I slid back into my normal fatigue. My sleep also hasn’t improved and I’m sure that plays a role in my low energy levels as well. Last, I’ve still been struggling with some pretty severe brain fog; I find that AI #3 helps on the really bad days, but I’ve yet to find something to help on an ongoing basis.

At this point, I’m happy with the progress. Focusing on detoxification really made a difference and I do think my quality of life is better for having done so. If I could just get some minimal amount of energy, I feel like I’d be in pretty good shape. I’m hoping that will come with time.

I’m pretty happy with my new doctor as I feel like he’s treating the whole person rather than just the disease (as my previous doctor did). He is pretty intense, though, speaking quickly and without giving a lot of detail. I’m okay with that approach at the moment, but I think if he had been my first Lyme doctor, I probably would have been too overwhelmed and confused. Having a year’s worth of learning behind me definitely helps.