Here is more history and some thoughts on differential diagnosis vs lyme: I have a 6-year history of extremely cyclic symptoms (basically constant with a break of a few hours to a day) in upper right jaw / right sinus/nostril and most recently throat. This started a couple of weeks following a trip to India where I may have been exposed to contaminated water. The exact cycle length depends on where the infection is focused in the body (14 or 15 days is most common). S.Y. in St Louis diagnosed the protozoan infection, possibly Entamoeba (which is water-borne). Some protozoa are very cyclical and go to cyst stage in between. There are some medicines for cysts but these only work in the intestines. At the time of diagnosis I did have stomach cramps (also cyclic). The stomach cramps cleared with Tinidazole but returned twice, which he said was due to the infected teeth on right side. Had those extracted by Dr. M - no teeth left on upper right now. This vastly improved symptoms but even with several months of tinidazole and many visits with Dr. Yu things did not clear. It seems that whenever a treatment works to some extent the bugs find a new way around it (the wiki page on microbial intelligence gives some ideas of how superior protozoan intelligence is - it is scary: https://en.wikipedia.org/wiki/microbial_intelligence
I get bad nerve pain in the jaw at times (hence the neurologist idea) but my main symptoms now are respiratory and a feeling of being poisoned by this infection. The infection also produces an extremely glue-y sticky transparent watery substance that sticks to my nose and throat. I wake up unable to breathe sometimes. Entamoeba is known for producing very sticky mucus: https://periocureiip.com/wp-content/uploads/2014/12/trevor-lyons-introduction_to_protozoa_and_fungi_in_periodontal_infections.pdf
. I have tried many biofilm breakers as I suspect that this sticky stuff prevents medicines from fully working. I had a Tibetan blend at one time with Terminalia Chebula which worked quite well but couldn't find a similar blend again.
How do I know I do not have lyme - well I guess there is no 100%. I never responded either with improvement or herxing to any lyme ABX (except tinidazole) - I took various beta lactams, doxy, bactrim, macrolides, clindamycine without a response one way or the other (also no herxing). Also did not respond to most of the herbs (except knotweed, which is also a superior anti-protozoan). The herbs that I do take, I take at very high doses (much higher than is common for lyme). Symptoms are distinctly local / one-sided centered on the right upper jaw. After the tooth extraction the DNAConnexions oral panel came back strongly positive for Entamoeba (no other notable results). Some of the dental practitioners (incl. 3 biologic ones) and herbalists that I saw were lyme literate at least to some extent and did not think lyme an option (neither did Dr. Yu). Lyme literacy is of course on a sliding scale, so these practitioners may have missed something. If another LL-practitioner thinks it is lyme I will certainly consider that and be grateful for any improvement this may bring. However, all considered, I am inclined to go with the clinical diagnosis by Yu, extremely cyclic symptoms (as some protozoa are known for), the DNA test, the prior history of water in India, and treatment response.
Dr. Yu also explained that my more viral type symptoms are due to viruses that live on protozoa. He never treated the virus and my immune system is obviously weakened, so perhaps this played a role in the lack of healing. The main virus that I had until about
a year ago was almost as bad as the protozoan infection. In retrospect I see how the virus to some extent kept the protozoa in check and I think that the protozoa only went into my intestines when the virus grew stronger in the respiratory tract. Protozoan viruses are commonly DNA viruses (like EBV or CMV) and some (e.g. Mimivirus) have a thick protective shell that makes them pretty treatment resistant. They are very susceptible to Cryptolepis (which makes sense given that Cryptolepis is active against both DNA viruses an protozoa, and the virus is released whenever Cryptolepis kills the protozoa, so it has to defend itself). Even more susceptible to clove oil (which I applied to my gum) - again makes sense because clove oil is so aggressive as an antiviral. With that, after about
4 years the virus cleared but then the protozoan infection intensified.
Dr. Y sent me on to an ENT and we experimented with a nasal rinse with metronidazole. The protozoa responded by migrating from nose into throat and eventually got resistant to metronidazole. I was very sick with that this winter. Dr. Y had no further ideas and I am not inclined to travel anyway due to COVID. Now treating with the following:
Cryptolepis. I found that the most effective way to get it into the jaw/sinus is by swishing tincture in my mouth for a while. It is of course a very good anti-protozoan.
- St Johns Wort oil - applied topically to nostril and throat. This was a surprise. It works so well and is known to have different ways of affecting protozoa - I can look for the links if people are interested. Apparently makes them more susceptible to the immune system and also limits them from going back into cyst stage.
- I took Japanese knotweed powder at high doses for a while but did not find it effective any more after a while. What it did for me was to take the feeling of heat and toxins out of my blood, helping me sleep better on the long run.
I also get occasional viral symptoms from what appears to be more a cold-type regular virus. Treating with Isatis leaf powder in hot water for that on as-need basis.
I am hoping to get to a neurologist familiar with chronic infections, get them to send me back to an ENT or internist or whatever, and will take it from there.
I understand that mystery illness always suggests lyme (or possibly parasites as an alternative). If folks here would strongly recommend that (or if an LL-neurologist does) then I will see about doing the Igenex. Maybe my (LL) dentist will sign off on the blood draw.
Thank you again!