Saturday, July 27, 2019

New Diagnoses and New Treatments ME/CFS and Lyme

Our son's struggles with ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome) and tick infections (Lyme disease, bartonella, and babesia) got even more difficult this year, but he is beginning to see some improvements now, thanks to a variety of new treatments.

It's been a long, hot summer here with seemingly never-ending crises in our family, but the biggest one has been the decline of our son's health. When he moved back home in May (he's 25), he was in terrible shape - worse than he's been in years - with a bunch of new symptoms and 40 pounds lighter. We knew he hadn't been doing well lately, but we didn't realize just how bad things had gotten. I took him to an Integrative Health practice that we'd heard good things about from local friends in our support group. The practice includes several different medical professionals, though we have been focused on two of them: a Nurse Practitioner (NP) who specializes in tick-borne infections (but looks at the whole body) and a Functional Medicine Practitioner, also a nurse, who specializes in GI issues and genetics. Both have been helpful so far, and with a bunch of new treatments and changes, our son is slowly improving. We hope to get him back to the point where he can live independently and even support himself; it is a slow journey, but we are seeing progress. Here's a summary of what we have learned and what he is trying, in the hopes that some of this will help others as well.

Brief History and Background
It's always hard to give a "brief" history of our son's illnesses because it is complicated, but here goes. He became ill with ME/CFS in 2004, two years after I did (his younger brother had milder ME/CFS that began at the same time but he is now fully recovered). By spring 2006, he was doing quite well, thanks to treatment for Orthostatic Intolerance and was back to school full-time, back in band, and even playing soccer again.

In April 2007, he had sudden onset of joint pain, plus all of his usual ME/CFS symptoms worsened. He tested positive for Lyme disease (a lucky thing, since the tests only catch about 60% of cases) and was treated for it. The joint pain improved, but he never really got back to that good state he was in the previous year. Over the next three years, his condition gradually worsened. Finally, some strange symptoms - and the help of other parents online - clued us into the culprit, and we took him to an LLMD, a Lyme specialist. He confirmed that our son had two other tick infections, bartonella and babesia, in addition to Lyme. Since the three infections had been present for so many years (and gone mostly untreated), they were dug into his system pretty solidly and were difficult to treat. His immune problems due to ME/CFS made treatment even trickier.

Fast-forward ten years. With treatment for the three tick infections, plus more treatments for ME/CFS, he improved to the point where he was able to start college on time, live on campus, and graduate with an engineering degree. The past ten years had its share of ups and downs, but each time he got worse, we got the bottom of the issues and treated him. This winter, though, he experienced the severe decline that I described. He was living away from home, there was a lot of stress in his personal life, and I had switched him from his usual tick infection treatment protocol (Byron White) to a different one (Zhang), a change I greatly regret now, so his tick infections had gotten worse, with worsening joint pain, fatigue, nausea, and headaches. In addition, he had developed completely new and alarming symptoms, including severe nausea, vomiting, a burning pain in his stomach, and severe anxiety.

The Tests
Our new medical practitioners ordered a slew of tests at his first visit, including:
  • Genova Diagnostics GI Effects 3-day stool testing (our medical team now prefers the Gut Zoomer test from Vibrant Wellness for stool testing).
  • Bartonella testing through Galaxy Diagnostics (well-known as the best bartonella testing lab, though still not 100% accurate)
  • Lyme and babesia testing through Igenex (again, known as the best lab for Lyme testing, though no tests can catch 100% of the infections), plus another babesia test through Medical Diagnostic Labs
  • Special stained blood film test through Fry Labs
  • Tests through regular labs for a wide range of viruses and other infectious agents (including other tick infections)
  • Tests through regular labs for Complete Blood Count (CBC), Comprehensive Metabolic Panel (CMP), thyroid function, celiac disease (gluten intolerance), vitamin D, homocysteine, hemoglobin
  • A more sensitive follow-up test for celiac when the first one showed some gluten sensitivity.
  • We had already done 23andme genetic testing and sent the results through MTHFRsupport analysis - the genetic specialist looked at that, plus sent our data through another analysis tool.
  • Saliva testing for cortisol and adrenal function (in progress).
  • DNA Connections urine test Lyme panel (recommended but not yet done).

The Diagnoses
Based on all those tests, we went back for a follow-up visit with both practitioners and learned a lot (some we already knew but much of it was new, recent, and surprising):
  • Severe overgrowth of bacteria in GI tract - the GI Effects test showed that he had very high levels of more than a dozen different nasty bacteria strains. The genetic specialist could point to specific bacteria strains and tell us what symptoms they caused, including the burning pain in his stomach, joint pain, and anxiety.
  • Low hydrochloric acid in stomach, which contributes to some of his GI symptoms.
  • Slightly low (low-normal) Total T3 (a measure of thyroid function); other thyroid measures normal.
  • Celiac disease/gluten intolerance (something we never suspected).
  • Low vitamin D3 - astounding since he takes 5000-10000 IU per day, though he wasn't taking all his meds the past few months since he often couldn't hold food or medicines down.
  • Viruses: EBV, CMV, HHV-6 - all previously negative and now present.
  • West Nile Virus - another big surprise.
  • Babesia - negative (confirming our former LLMD's conclusion that he got rid of this one infection).
  • Bartonella - 2 strains present.
  • Lyme - equivocal results but likely, given his history and symptoms.
  • Though babesia is gone, many other unidentified protozoa showed up in the blood smear.
  • Lots of biofilms in his blood (sticky clusters of cells - Lyme bacteria is known to convert to biofilms, which is part of what makes it so hard to treat).
  • Yeast overgrowth (which we already knew about and have been treating). 
  • Genetic results showed he may be an over-methylator.

The Treatments
  •  Nrf2 Activator (a Xymogen product) -  to activate the Nrf2 genetic pathway (per his genetic results - this is one of two genes present in those who don't respond fully to treatment for Lyme disease). This pathway regulates the production of important molecules that impart antioxidant activity, such as glutathione and superoxide dismutase (SOD). It also regulates the production of detoxification enzymes.
  • Resumed A-Bart and started A-L Complex, herbal formulas for bartonella and Lyme, respectively, that are part of the Byron White protocol. He'd previously responded well to A-Bart. He is VERY sensitive to tiny doses of any tick infection treatments, so he is only taking 1-2 drops of each per week so far and having to build back up very slowly.
  • Added CBD Oil, as needed for nausea, vomiting, stomach pain, joint pain, and anxiety - it's been very, very effective for him in controlling these symptoms in the short-term, while we work to eliminate their causes in the longer-term. We are using the Plus CBD Oil brand, which we buy at our local natural foods store and have found to be effective. Sometimes he buys edibles at a local dispensary, and the vape pen was also effective but effects didn't last long (if using vape, ask for solvent-free).
  • Cytomel 5 mcg (Rx) - a tiny dose for his slightly low thyroid T3.
  • OrthoDigestzyme - 1 pill upon waking, gradually working up to 3 per day, before meals - to treat bacteria in GI tract, stomach pain, nausea, vomiting, and lack of appetite. Saw immediate improvement from the first week. 
  • Changed Probiotics - stopped all probiotics he was taking, except saccharomyces boulardii (for yeast) and added UltraFlora Integrity - to treat bacteria in GI tract, stomach pain, nausea, and yeast overgrowth.
  • ATP 360 - 1-3 per day for improved mitochondria function and energy production.
  • P-5-P 25 mg - an active form of vitamin B6 that I was already taking.
  • Mega Mycobalance - 5 capsules 1-3 times a day - for yeast overgrowth 
  • Stopped methylcobalamin (B12) injections - continuing hydroxycobalamin (B12) injections (Rx) every other day only (due to genetic results).
  • Reduced 5-MTHF (20 mg - we buy both 15 mg (at link) and 5 mg) from every day to 3x/week (due to genetic results).
  • Moved Magnesium-l-threonate from afternoon to bedtime (3 pills) to help sleep. 
  • Switched from acetyl-l-carnitine to Carnitine Synergy, a product that includes both acetyl-l-carnitine and carnitine.
  • Eliminate gluten from diet.
  • Rinse with Biocidin after brushing teeth - to help with certain oral bacteria found in his GI testing. 
  • Eat 2 Tablespoons of navy beans twice a week to help with Collinsella bacteria.
Results So Far
  • Stomach pain, nausea, loss of appetite are all greatly reduced and vomiting is now rare. He can eat again, hold down his food, and is beginning to gain back some weight.
  • He's working as a waiter 2-4 nights a week.
  • Anxiety is reduced, though still an issue.
  • His average daily rating of how he feels (on a scale of 1 to 5, where 1 is good and 5 is incapacitated) has improved from a low of 3.3 to 2.8.
  • His % of time crashed (at a 4 or 5) each month has improved from 42% to 19%.
  • He's had the energy to enjoy time with friends or his girlfriend several times a week.

So, he is doing better, improving slowly but surely. He is continuing to work on diet and increasing the dose of the new supplements listed above. He has more testing to do (the saliva test and the follow-up GI testing through Ubiome), and follow-up appointments at the end of August. All these new supplements on top of the many pills we already take are a lot to keep track of, but we're helping him to juggle it all.

Now you see why I haven't had as much time for blogging or social media this summer! This crisis was frightening for all of us, and he really hit bottom by May, but we are hopeful that he will continue to improve. His goal is to make use of that engineering degree and get a full-time job so he can support himself.

I recognize that his particular set of problems is both unique and complex, but I thought that elements of what he's been dealing with would be helpful to others. In particular, I highly recommend the GI Effects testing kit from Genova Diagnostics - we learned so much surprising information from that.

UPDATE 4-11-23: Shortly after I wrote this, the Genova test became temporarily unavailable (though it looks like it might be available again now). Our medical team now uses the Gut Zoomer test from Vibrant Wellness, which my son recently took again to see how he's doing. I also used the Gut Zoomer test two years ago when I developed chronic diarrhea.

With the help of this test and treatments recommended from our functional medicine specialist, my GI function is now back to normal.

Another finding from this and later tests was that my son is severely gluten intolerant (perhaps even has celiac disease). Eliminating gluten from his diet led to further, giant improvements, not only in his GI symptoms but in energy and overall well-being. He is so much better now that he recently started his first-ever full-time job in his professional field (he is 28 and got ME/CFS at age 10). A large part of his improvement came from finding and treating GI problems, since a large part of the immune system is in the GI tract.

Have you dealt with any similar problems? Or found some effective solutions to some of these problems? Please share your experiences in the comments below.

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