Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Wednesday, February 17, 2016

A Moment of Truth with My Doctor

I had my latest appointment with one of my doctors today, Dr. M.  She is my "second-string" ME/CFS doctor, but I need her for all the treatments Dr. C doesn't meddle with.

We Disagree About Whether I Have Lyme Disease

In past posts, I wrote that Dr. M believes, with "100% certainty" that I have Lyme disease.  This is based on her clinical diagnosis, an equivocal Stony Brook Western Blot test, and an IGenex Western Blot test that was positive IgM, negative IgG.  To be honest, her "100%" pronouncement was a bit of a red flag for me, as I don't think a responsible doctor should opine 100% certainty about any diagnosis, let alone something as complicated and controversial as chronic Lyme.  But on the other hand, I very much need a doctor to fill Dr. M's role, and I feel she is probably my best option right now.  I am reluctant try to find another local doctor who specialized in complex neruo-immune illnesses.

After first receiving the IGenex results, I thought I probably did have Lyme. But after reading more about Lyme and consulting other patients and doctors, I came to the belief that I probably do not have Lyme.  In my mind now, there is about a 10-20% chance I have Lyme.  Thus, I have a fundamental disagreement with my treating doctor...which can be a problem.  And so I went into this appointment intent on having a straight-talk conversation with Dr. M to determine if we should continue working together.

I explained my skepticism of the Lyme diagnosis as diplomatically as I could, trying not to make it sound as if I don't trust her experience or judgment.  Then I noted that the two main treatments she wanted me to try for Lyme would theoretically help regardless of which neuro-immune disease I have.  She has me taking Byron White's AL Complex, which is labelled first and foremost as "immune support," not necessarily a Lyme treatment.  The other treatment is Lauricidin / Monolaurin, which is supposed to be a powerful anti-bacterial, anti-viral, and anti-fungal.  So, in theory, these two treatments would help regardless of whether I have Lyme, ME/CFS, or both.  Plus, since I think there's still a small chance I might have Lyme, I want to hedge by incorporating at least one Lyme treatment into my plan, especially if that treatment helps with other conditions as well.

So I asked Dr. M, does it matter if we don't agree on exactly which disease within the neruo-immune family of diseases I have?  I said that in my estimation, it seems that about 80% of treatments overlap between Lyme and ME/CFS.  Could we simply focus on treatments that work for both?  She agreed that we could (maybe she simply wants to keep my business) and so it was settled.  

Phosphatidylcholine

I then told Dr. M about my experiment with Phosphatidylcholine (PC), a treatment she had recommended. To summarize my experience with PC: it started a major detoxification event from which I still haven't quite recovered.  I was effected badly by Herxheimer or detox symptoms: achy kidneys, crippling brain fog, muscle twitches, unquenchable thirst, urine that was a strange shade of yellow (almost brownish-yellow), and increased fatigue/inflammation.  

Dr. M echoed what I had already been thinking: that this reaction was actually a good sign. If we interpreted these symptoms correctly as the result of detoxification, then my body needs this detoxification.  I simply need to titrate more slowly.  (Dr. M pointed out that her instruction sheet from my last appointment clearly advised me to titrate slowly, which I completely overlooked.) So I'm going to try PC again, this time using the capsule form (as opposed to liquid form) so that I can more easily control the dose.  18 capsules apparently equals one tablespoon of liquid PC, so now I can start with 1/18th of the prior dose.  

Dr. M explained again that PC repairs and cleans cell walls throughout the body, which is consistent with what I had independently read. These built-up toxins (and oxidative stress?) then become merely waste in the body, existing intracellularly (between cells).  Releasing too much of this waste at once can make a person feel very badly.  I believe that's exactly what happened when I went directly to a high dose of PC; the symptoms fit.  

Hormones

I continue to believe that bringing the hormones back into something that resembles a "normal balance" is one important key (among many) to regaining health.  That's something that every ME/CFS doctor I've met with besides Dr. C has advised (Dr. C. has a laser focus on enteroviruses and related treatments, to the exclusion of most everything else).   

We also agreed that the dose of active Thyroid hormone (T3) my previous doctor had me taking was too high (75 mcg/day).  We want to go back down to 50 or less.  This has to be done very slowly and carefully because the body needs time to adjust and start increasing its own production of the thyroid hormone precursor, T4.  As a first step, we're only reducing it by 10 mcg.

We're also going to put me back on testosterone cream instead of the self injections.  The injections were causing me groin pain and I had to quit.  Prior to quitting, testosterone was helping substantially.  Thus, we want to add it back in, but less aggressively, and using a dosing method (cream) that doesn't lead to such extreme spikes of testosterone levels in the blood. 

So now we have a new plan... 

4 comments:

  1. Amazingly similar story here. I just read your post on prostate issues, my results just came through stating it was very large. Perhaps that's a place for our infections to perpetuate.

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    1. Very interesting. My painful prostate issues did go away around January of 2015. I think it might have been because I stopped taking injectable Testosterone. Several doctors told me that the T couldn't be causing the prostate pain, but I had suspicions otherwise. I'm pretty sure I was correct, unless it was a very big coincidence.

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    2. Test derivatives such as DHT can cause prostate issues, ask any bodybuilder.

      @Patrick does Dr Chia do phone consultations? I had the stomach biopsies tested by his lab which resulted in 2+ positive result. However oxymatrine and inosine for over 1 year has not helped.... from your posts I know that I need to try combining amantadine or epivir at some point but am gunshy.

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  2. thanks for all the information, may be useful for others. Do not forget to keep the spirit. obat radang telinga

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