Saturday

I was able to go back on the Nystatin on Wednesday. The palinopsia didn't stop, and the pharmacist agreed that 48 hours should be more than enough time for the Nystatin to be out of my system (with the tablets, almost none of the drug is absorbed through the gut).


Looking back through my posts, I see that I never posted an update after my 3/8/11 appointment with Dr. L. Here's a summary.

My calcium was high on my last set of tests. She asked me if this was normal for me, and I said no. She told me to stop my cal/mag supplement and add a plain magnesium supplement 250 mg daily.

My TSH was almost nonexistent -- below 0.01. She asked me if my TSH was historically low, and I said yes. She wants to see a copy of my thyroid chart next time -- have printed one out to take to her and put it in her folder. We also talked briefly about my T3:T4 ratio, which has gone from 1:250 to 1:2. She asked if my internist is taking care of my thyroid, and I said yes. (Hoping this is true -- I'm concerned because I never got a response to the email I sent to Dr. K with the new ratio, and she has kept my dose of thyroid meds the same. I had forgotten about this before. It seems to be a developing trend, which isn't good.)

My IgM antibody levels were very low. Selective IgM deficiency? She wants to retest at some point.

We talked about the nausea, heartburn, increased fatigue, and loss of appetite I had been having since increasing the Malarone, and the extreme reaction I had when I went back on the artemisinin after my week off last month. She said all the side effects were normal for Malarone except for the loss of appetite. She mentioned the Cowden protocol to me, and we talked about what herbs I had taken on the Buhner protocol. I couldn't remember what I had read about Cowden, so I promised to look into it (more below).

Dr. L was very excited to hear about the possibility of IVIG, which the neuro-ophthalmologist had suggested for my vision loss. She said that while it's almost impossible to get for Lyme patients, it tends to work very well. She strongly encouraged me to give it a try if it's offered.

When she examined me at the end of the visit, she found that I had a thrush infection. She prescribed Nystatin for this. She told me that Nystatin would only work for yeast that was in the GI tract, so I asked her if there was something else that would work for vaginal yeast. She said she had a supplement called Candicid Forte, so I bought a bottle to try. She also gave me a prescription for Omnicef to try for the tooth pain.

summary of changes to medications and supplements:
stop calcium
add magnesium supplement
Artemisinin -- keep dosing the same (100 mg BID, 3 weeks on, 1 week off)
Candicid Forte -- start with 1 capsule TID, increase to 2 capsules TID if no reaction
Malarone 250/100 mg -- max is 3 tablets BID; try to keep dose the same; drop if side effects get too bad
Omnicef 300 mg -- start with 1 pill BID, increase to 1 pills BID if no reaction
Nystatin -- 1 pill TID


The only thing I haven't done so far is to start the Omnicef. I'm afraid to start the Omnicef when I already have a Candida infection. Dr. L had already decided to put me on Omnicef when she found the Candida in my mouth, and I forgot to ask her if I should hold off.

I'm careful to add new meds, herbs, and supplements one at a time these days because I have had so many adverse reactions. I tried the Candicid Forte first, the day after my appointment with Dr. L. It tasted delicious (the oregano oil), but I had an adverse reaction after the second capsule -- my rate of extra heartbeats noticeably increased, and I felt dizzy and ill -- so I didn't take any more.

After a rest day, I started the Nystatin, and that night I had my first episode of palinopsia. Working out what to do about that took me until Wednesday. On Thursday I took 410 mg of magnesium in the form of Natural Calm. I took 1 teaspoon at first (205 mg), and it helped so much to reduce my pain that I took another teaspoon before bed. I slept better than I had in weeks, and coincidentally, I also had no palinopsia that night. The Natural Calm formulation gives me gas, so I'm now experimenting to see if Bluebonnet magnesium glycinate capsules will also work to resolve the palinopsia. So far, the palinopsia has been reduced but is still present after taking 200 mg BID of the magnesium chelate, and my gut isn't loving it at this dose. I'm giving it one more day before I return to the Natural Calms.


Research on the Cowden Protocol
Here is what I have found so far.
Cowden's protocol uses proprietary (and very expensive) herbs and minerals manufactured by NutraMedix. The NutraMedix website has the following explanation of why no information is provided about the functions of the herbs:

In the United States, our products are sold as nutritional supplements; therefore, the FDA does not allow us to discuss the medicinal benefits of any of our products. We can only recommend that you perform an internet search for the information you are looking for. We are also prohibited from directing you to a specific website that may contain information about the medicinal benefits of our products.

Fair enough, but they don't even provide the species of the herbs used in their extracts and capsules. I have learned enough in the past year to know that in herbal medicine, species of herbs within the same genus can have different effects.

Dr. William Lee Cowden has written, co-authored, or contributed to 6 books, including alternative medicine guides to longevity and cancer. His last appearance in print, as a contributor to the book Insights into Lyme Disease Treatment: 13 Lyme-Literate Health Care Practitioners Share their Healing Strategies, seems to have been in 2009. When I checked last year, the book wasn't yet available in our public library system; it is now, so I requested a copy through interlibrary loan.

I was unable to find any pertinent research papers authored or co-authored by Cowden WL, Cowden W, or Cowden L in a Medline search. Of the 8 available search results, there were two papers about autoimmune diabetes, one about autoimmune CNS inflammation, one about anticoagulants, one about a specialized type of cranial surgery, one about low oxygen saturation tolerance, one about suicide attempts, and one about physiological response to ethanol among the Tarahumara Indians of Mexico, none more recent than 2003.

My conclusion thus far is that, while Dr. Cowden's training and experience suggest that he might be capable of putting together a good Lyme treatment program, there's not a lot of evidence so far to suggest that his protocol with NutraMedix supplements would work any better than the Buhner protocol I tried last year. I'll post again with an update after I read his section of Insights into Lyme Disease Treatment.