posted
Evening everyone. Tomorrow I head back to my LLMD to discuss the state of treatment. Personally, I'm rather frustrated with my current health.
I've "plateaued" if you will, in that I feel that I'm not making forward progress. Thus, I aim to remedy that. Right now, it seems that all my LLMDs can offer is a shotgun approach - firing in the dark and hoping they hit something. Thus, I'm trying to find out what is still causing my primary issues.
It really seems as though my LLMDs are just "coasting" along, not really looking too hard for any new leads. So tomorrow I'm going to request some diagnostics, and I was hoping that the community could help me remember/suggest those that may be helpful.
1. Lyme. Originally diagnosed by IgeneX Western Blot, was positive and even CDC positive the first time.
I'm not sure if it would be worth it to run another WB - it seems they're really quite good at illuminating infection, but not resolution. Can anyone suggest a Lyme test that's the most accurate in diagnosing current infection versus past infection?
2. Babesia - Positive, IgeneX WA-1 at one time. Treated, and subsequent negatives on Quest/Labcorps tests. Negative FryLabs smear, relatively recently. Ideas for an accurate Babesia test, or shall I just repeat those I've done before?
3. "Other" - I have never been tested for Mycoplasma or Chlamydia Pneumoniae, as my LLMDs thought that my treatments would "hit" them too. Still, since I'm starting fresh with diagnostics I'd like to get them both tested. Looking for the best lab/test. Anything else I should be looking to test for?
4. Viral. I have positive EBV titers, but that is to be expected as I did have Mono (the start of this whole illness). However, said titers are not off the charts high like many who treat with viral protocol. CMV was negative. HHV-6 was not tested. I'm planning to get titers redrawn. Any advice?
5. Genetic - I really don't want to resort to genetic testing, but if I have to, what is advisable? Primarily HLA typing, right? Looking for the DR4
6. Hyper coagulation - The only semi-lead we have is that recently, I'm a little bit hypercoagulative, as tested by Factor V. We need to repeat the test because the lab botched it once, but I did test for the Leiden mutation, which I do NOT have. Thus, it stands to reason that the only reason for someone my age and diet would have this issue would be because of lyme fibrin shielding, either "left over" or from current infection. Quite awhile before we actually tested for this, I did take Rechts Regulat of my own accord, with no noticeable changes in feeling overall. Definitely going to repeat the Factor V.
Other info - I don't herx in an instantly identifiable manner. My CD57 is >200. I've done herbals. I've done IV Vitamin C. I've done an allergy elimination diet, with no results. I've never had any other allergies to speak of, nor have I ever been a "sickly" person before Lyme. I eat expensive (sigh) organic health food, but I don't eliminate any particular food groups at this time and none make me feel any worse.
Major symptoms -
Fatigue Brain "issues" - Fog, inability to concentrate, slight OCD tendencies, inability to just "make myself do things" etc.. all the normal things that seem to go along with the disease. Pain - Joint, muscle. Skin - Acne or acne like issues, face/chest/back. Could be related, could be unrelated.
I'm well aware this post isn't up to my usual standards of inquiry, but I'm a little low on time for research unfortunately (and exhausted!). Thanks.
Posts: 690 | From East coast, USA | Registered: Jun 2006
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posted
You don't say anything about antibiotics, so I assume you haven't done any, only herbs, IV vit C and diet?
You might try something like Farah's Lymessence Essential oil or ozonated olive oil on your skin and see if it helps if you're not open to antibiotics.
Posts: 975 | From California | Registered: Apr 2007
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I've taken most oral antibiotics (doxy, zith, mino, ketek..a few others I'm forgetting..), anti-malarial (mepron), cyst busters (Tindamax, Alinia) for an extended period of time.
I was one one kind or another for several years, in conjunction with the other therapies listed above. I'm definitely antibiotic "friendly", and didn't have a difficult time on any of them. However, I have been off them for about a year or so.
Posts: 690 | From East coast, USA | Registered: Jun 2006
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