If you are new to Lyme, this is also for you. This is my first post. If you are not new to Lyme, I would be incredibly grateful if you could read on and answer a few questions--you won't believe this story:
I got bitten in Holland (where I live) in the summer of 2012, spent months getting sicker and sicker, nearly lost my relationship and everything else, felt hopeless, and then started to suspect Lyme--even though my doctors were clueless. (If you are curioius, here I list my symptoms. You might want to read this).
two weeks or a month after the suspected bite (I felt a bump on my scalp but I didn't check it, not knowing there were ticks in Holland), this is what happened:
Profound fatigue which would cycle every week or two.
Then, a month or two later:
Tremor in thumb
Tremor in other parts of body
Twitching of chest muscles. Then MASSIVE twitching calf muscles, twitching fingers, twitching face muscles, etc.
Then a feeling like my right foot was swollen up (I would even loosen my shoe for relief).
Then inflammation started around my big toe (I suspect this is early ACA, which is specific primarily to European strains of borrlelia--look it up if curious).
Numbness in my fingers
Numb arms when sleeping in perfectly NORMAL positions
Swelling of my fingers
Fluttering sounds in my ears
Sound sensitivity: suddenly chewing toast or hard foods was loud in my head
My neck started creaking like popcorn when I would turn it
My muscles swelled up around my writsts and in my thighs
Tingling in all parts of my body, like electric shots, coming and going
My toes started moving/twitching/cramping on their own
Swollen tendon in the affected toe
Then after a few months, sharp "voodoo pains," shooting pains in small joints, particularly fingers and toes. They stab, then disappear, then stab somewhere else.
Inability to think clearly--was difficult even to plan something simple
Starting slurring words
Entire right leg felt heavy, even though I could move it just fine.
Numb face on one side, also comes and goes
There are probably more...
So I educated myself. Big time. I think I know more about
Lyme disease than most neurologists in the major Dutch hospitals at this point. I started pushing neurologists and infection experts for Lyme testing. I was finally tested--and then rejected--by one of the country's foremost experts and advisors in Lyme, at a hospital called AMC in Amsterdam.
He did one single IgM and one IgG test, and he said it was "negative." He didn't even mention what lab it was or what bands were tested. And since he thought it was "negative," he said there is no way I could have borrelia. When I said: "But isn't it true that this bacteria can be hard to find?" His response was: "This bacteria is smart, but it's not that smart."
THIS MAN IS INVOLVED WITH SETTING THE ENTIRE DUTCH POLICY ON LYME TREATMENT!
So I finally threw in the towel,
opened up my savings account, and flew back to America. I went to a very very good LLMD in Pawling.
After interviewing me for over an hour, recording everything for history, examining me, taking 18 vials of blood and doing a spinal tap, he diagnosed me with Lyme disease and a probable coinfection of Babesia duncani. (And I expect I might have Bart too, even though it was negative.) In fact, even after JUST the long interview he wanted to diagnose me with Lyme, but said let's wait for the test results. I remember him saying: "What doctor can come to me and explain how you could have so many attacks on multiple body systems at the same time?" After so long being sick, I felt like falling out of my chair.
Here is where I need a bit of your help. I am new to this.
I heard that when Igenex gives you three plusses (+++), it is rare that they write that, and it means you have a very strong reaction. Is that true?
Can anyone comment on the following results:
IGENEX: Lyme Western Blot IgM positive +++31, +34, +41, ++58, +93 and IND39.
Lyme Western Blot negative: +41 and IND 31
Babesia duncani (WA-1) positive 1:256
CSF FROM STONY BROOK:
CSF Lyme ELISA borderline 0.123 (borderline cutoff 0.118 - positive cutoff 0.153).
Lyme Serum positive 0.254 (borderline cutoff 0.118 - positive cutoff 0.153)
Fluid/serum index: 0.48
Lyme serum Western Blot IgM IND: 41 (18, 31, OspA, 34 OspB, 58, 64, 72, 93)
Lyme serum Western Blot IgG negative (36)
My LLMD's conclusion was that in his opinion (with 30 years experience at the forefront of the disease), that I have so many highly specific bands across a number of different tests and laboratories, that I indeed have Lyme, and probably Babesia.
If anyone has experience in these tests, can you please comment? THANK YOU!
Lastly, I am impatient. I have been on 200mg of Minocycline for one month. Before that I slowly ramped up to that for two prior months. And I have been on one Malarone for 3 months.
My energy is generally far better than it was before the abx and malarone, but the disease is NOT GONE. My symptoms seem to be CYCLING FASTER than they were before, and a perhaps a BIT milder, but not nearly as much as I would hope. Any comments on this?
QUESTION 4 (OR COMMENTS):
Here is my protocol, if you have any comments:
Wake up: 400 mg Mag Citrate
175 mg milk thistle
10 drops of GSE in water
1/2 later empty stomach:100mg Minocycline
Later in the day: 1400 mg purified fish oil
Solgar Vitamin D/immune booster
WITH YOGH AND MILK: 1 Malarone
Later: another 175 mg milk thistle
Solgar B-complex "50"
Empty stomach around beditme: 100mg Mino
In the night: more yoghurt
I am about
to add super artemisinin from Allergy Research. My understanding is I should start with perhaps 2 capsules per day of 200 mg on an empty stomach for three days on and two days off or something? Can someone comment on dosage?
Should I ask my LLMD for more abx? His feeling was "give it time since you are feeling better." But I want to hit it hard, especially if there is cyst form. He thinks tinizadole might be the way to go. I have read from Burrascano that Azith is not effective against borrelia, but maybe against Babesia. Any thoughts?
LASTLY, THANK YOU! THIS FORUM TRULY HELPED ME HELP MYSELF, AND GET TO THE CAUSE OF MY ILLNESS. In the worst times, I remember having shooting pain in healthy teeth, and fluttering sounds in my ear, and after looking it up, there those symptoms were on healing well. Fellow Lymies sharing. Without this forum I don't know if I would have managed to figure this out.
So, THANK YOU. Please ask me any questions you want, I am here to help.
Best to you all,