I did 23andme testing and uncovered several mutations. Most notable is my homozygous MTHFR 1298. Unfortunately, although my doctors have found the info interesting, I'm not sure it has been...
I want to pass along the suggestion to consider products that help "ground" us, like sheets, mats, body bands sold by earthing.com. My chiropractic neurologist suggested I try it after he himself...
I'm curious about the value of adrenal saliva testing. How actionable would confirmation of adrenal fatigue be? I did the iris contraction test and found that my contacting reaction to flashlight was...
Thanks for your thoughts. I certainly like the view that new symptoms are part of "healing process" And I'll stay away from other specialists for now. I would hate to experience a doctors response...
I just discovered I have bakers cysts behind both knees. And, my lightheadedness/ low blood pressure has become more problematic. I've been sick since May 2014. Began with severe often debilitating...
I can relate. I sometimes get internal vibrations. I also have trouble regulating my body temperature sometimes. The longer I'm sick, the more I see that symptoms come and go, morphing and migrating....
I also wonder about doing samento/banderol along with an antibiotic protocol. My LLMD just switched me from Cowden protocol after 3 months. She now has me doing antibiotics just 3 days/week (4 days...
Thx, daddylonglegs. Yes, my LLMD abx protocol hits bart and babs. I guess i'll stick out another several weeks of cowden til the family returns, then try the abx. ugh...
I've been sick for 14 months, pretty much sidelined from life. Initial sudden onset was nausea followed by intense vomiting one night, then extreme chronic fatigue and severe often debilitating daily...
My doctor sums up her impression of these results saying we don't know more than before. She says continue on cowden if I'm seeing some improvement, although I have the doctor's antibiotic protocol...
Thx, Lyme girl. That makes sense!...
Not sure how long. It seems like it should be longer, so you could order more tests depending on initial test results....
Plus, igenex retains your blood samples and you can order additional tests on your blood later, I understand....
So sorry for your suffering. My LLMD suggests only doing igenex tests #188 and 189....
I'd be very curious about this question. I'm hearing that even csf analysis for Lyme has false negatives. Back in December, I had an LP to establish opening pressure in a workup to diagnose possible...
I just sent in my igenex test for Lyme tests #188 and 189. I am about 8 weeks into the cowden protocol, and did NOT stop cowden before doing igenex testing. In fact, my LLMD said being on cowden may...
Anyone heard of Parasitology center, inc?...
The knowledgeable facilitator of my local Lyme support group recommends Parasitology Center as the most sensitive/accurate test for babesia. She herself tested positive on their test. Their website:...
I've had the bad shin bone pain too. I too describei it as "like shin splints",which can be excruciating. Glad I'm not alone ;/...
Your llmd sounds experienced, attentive and thorough to me. Fingers crossed for you!!...
I'm RH - not sure type....
HERE HERE sweetpeaisme!...
Thank you guys for these thoughts. I have a call in to my llmd. When I asked her earlier about the impact of cowden program on igenex test sensitivity she said being on cowden could help get a true...
Yes, I'd pay any amount to have my health back. But I certainly don't have money to spare or throw away on unreliable tests. I'll get igenex testing for Lyme at least, maybe others as well. Thinking...
Runnergirl82, thanks! Do you know specifically which Bart tests were run? a llmd with 25 years experience sounds great IF your experience has been good with him. I guess uncertainty is part of the...
When I don't push myself to participate in life, I can generally feel ok ---for the few hours I try to function at home outside of my bed. If I go out to try to do much of anything, I pay later by...
I'm still struggling with a clear diagnosis, but haven't had igenex testing yet. My LLMD was skeptical about the value of co-infection tests--even done by igenex--since she sees lots of false...
So sorry!! Headaches and leg/ hip pain all really suck. Can the kids skip their baths? You need a break. Hope you feel better by the time you read this. I've been wondering a lot myself about hip...
Thanks so much, you guys. Very helpful!!...
Yes, thanks for this, SLML. Mold has been raised as something to consider. I don't know whether I have the genetic type that you refer to. I DO know I have the MTHFR 1297 CC mutation, which I...
Gary, While i am far less knowledgeable than others on this forum, Lyme and/or other tick-borne infections seem pretty likely. I'm just glad for you that your doctor put you on doxy already while you...
I may be doing Igenex testing and have several questions. Do you guys recommend I take an antibiotic or herbal provoking agent before having blood drawn for tests in order to increase the chance of...
I'm also very interested in this nano trap Lyme antigen test. Several weeks ago, I was trying to get a new patient appt at dr Sam shor's office in Reston va, where that test is now offered. Betty...
Myeezy24 you sound really similar, almost eerily so, in your symptoms to my own case. Just want to say, I refer to the MTHFR gene mutation as the motherf**ker gene...that seems to be an appropriate...
Many thanks to Deejavu, catchscooter, Traveler, jenny setter and Sarah! Thank you for boosting my faith in herbal protocols as well as my body's natural healing power. Bring on the Cowden....It's...
Thank you, Revive, for responding. I really appreciate all the Lyme info this forum has provided. I've continued to spend countless hours here and elsewhere learning about TB illnesses or Lyme-MSIDS....
Earlier this month, the LLMD suspected MSIDS based on my symptoms. I myself needed convincing, and now I feel more sure about that diagnosis. My cd 57 was 26 and several other blood test levels lend...
Silly sheep, YES!! multitasking is not possible for me either, not that I was ever very good at it. Physical and mental exertion build on each other, so I don't do much of either! Trying to figure...
Sorry if I upset you. Yes waiting sux!! If you have an appt with a good LLMD in June, then s/he will be worth the wait. Feel free to email me and I'd be glad to talk on phone. Hang in there!!...
Superj50. I'm with you...I'd definitely prefer to call my illness "MSIDS". MSIDS is more descriptive, and the general population remains so clueless about chronic Lyme. Correct me if I'm wrong, but...
Starlette89, I don't know how long you've been sick, but I too would advise you to see a LLMD asap. June is not soon enough! Be pushy, be willing to travel far, call in favors, do whatever it takes...
I have some partial bloodwork back that my doctor says adds support to her clinical diagnosis of MSIDS with Lyme/tb infections. Apparently my CD 57 is pretty low:26. I tested positive for mycoplasma,...
Catchscooter, I too have experienced how the emotional response to this long term illness can be intense and scary. I have older kids 18-23 whom I've made cry with my loud wailing and sobbing...
Systemic exertion intolerance disease is a new name for chronic fatigue syndrome (nothing more, nothing less). I prefer the name and found it fit me well because a consistent symptom for me is...
Im looking for opinions on whether CSF testing can provide valuable info not found through blood tests. I had a lumbar puncture (to measure my opening pressure) followed by CT myelogram in December...
does "bump" mean you too want to see answer?...
Thanks, Mister Mike!...
Ever since I began believing I may have Lyme, I've been reading online. There's almost too much info! I have been devouring Dr. Horowitz's book: Why Can't I Get Better? Solving the Mystery of Lyme...
I'd appreciate any recommendations. Thanks!...
My headaches can be killer. I use cold packs on my head, heating pad on neck and shoulders. Acupuncture has been really helpful as well. I try to go 1-2 X week. I also do Alexander technique...