Hi all - I've been posting from time to time on the Peripheral Neuropathy section of this site. I have had weird autoimmune/neuro symptoms for years. I was tested for lyme years ago and was told I was negative. One of my docs recently recommended I go to a family medicine doc in our area who is lyme-literate and has developed his own unofficial subspecialty diagnosing and treating lyme.
I went to see him and he ordered a whole host of blood tests. Honestly, I did not think I had chronic lyme. I feel like I don't have what I have been told are the classic symptoms and presentation. I don't have bad joint aches. I have fatigue but not disabling fatigue.
Anyway, you all are so smart on all this stuff and I'd appreciate some feedback on (1) whether I can trust this diagnosis and (2) his suggested protocol.
(1) The diagnosis
The Western Blot results were NEGATIVE in the IgG category, but in the IgM category my result was POSITIVE. Specifically, the results show "PRESENT" in IgM P41 Ab., IgM P39 Ab., IgM P23 Ab. so the final line item "Lyme IgM WB Interp." says POSITIVE.
He also did a test called "Abs.CD8-CD57 + Lymphs" my result was 54/uL, which is low. The normal range is 60-360/uL. He said this indicates that my immune system is compromised.
He did a bunch of other tests, but the last one I'll mention is the "Celiac HLA DQ Assoc." For DQ2, I was NEGATIVE. But I was POSITIVE for DQ8. I don't believe this means that I definitely have Celiac, but it means that I am genetically predisposed. Is that correct? All other tests I've had for celiac including biopsy from colon and upper GI and including a stool test from Enterolabs were negative.
(2) The Recommended Treatment
This lyme doc basically follows what I've been told is the Marshall Protocol. The doc says I will need to take low dose antibiotics long term. We will need to change antibiotics every couple of months. He also wants me to take a blood pressure medication called Benicar because he says that breaks down the biofilms on the bacteria and helps the antibiotics work better. Frankly, being on a blood pressure med scares me
My BP has always been low. Plus, the doc says I have to get the med from Canada because my insurance won't cover it since it is not a conventional treatment for lyme. I have never ordered drugs from Canada. Anyone know of a reputable Canadian pharmacy?
I'm on a whole host of supplements already but he's recommending more. Specifically, he wants me to take Lumbrokinase while on the ABs and he wants me to take Samento (extract) and Banderal (elixir).
Another interesting tidbit. One of my docs recently directed me to pulse dose prescription megadoses of Vit. D over the next several weeks/months to get my D levels up. But the lyme doc said not to because the lyme synthesizes Vit. D and D helps the bug thrive. I said, well if I'm low, then is the lyme really synthesizing the Vit. D
? He said that the other doc should have tested my activated D because that is a more correct test and that would probably show that I have high levels of D. What??
Anyway, I already took the first megadose of prescription strength D last week so there's probably no point to doing the activated D test now since I have megadose of D in my system.
I want to trust this guy. He seems very smart and lyme literate, but I am also apprehensive. At the same time, maybe this is the answer I've been looking for that truly connects all the weird health issues I've had for 16 years. And there are the dietary changes that he wants me to make. Those are so difficult when I work 50 or more hours per week. Plus, I am already skinny. Removing gluten and dairy instantly makes me lose weight...too much weight.
Ugh. I don't know whether to be hopeful or skeptical. I am definitely scared. I know lyme is an ugly disease and can take years to treat.
I would appreciate any wisdom any of you have re: the info on my diagnosis and on his suggested treatment plan.