i remember my llmd in denton telling me after testing that i had "straight lyme" which was strange. he said the testing indicated no co-infections.
anybody else ever told that??
Posted by Beth22 (Member # 30232) on :
I appear to have no co-infections. I know it's rare. I have not been tested because I have no symptoms to indicate the co's, but I thought the tests were inaccurate.
Posted by bigstan (Member # 11699) on :
No my lyme came out of the closet a few years back. j/k
I don't believe there are any true answers as to LD with/without co-infections or not. Perhaps some get the positive co-infections test.
I think that the sicker you are the more likely co-infections and it's better to treat everything with or without positive tests.
Posted by James1979 (Member # 31926) on :
I'm not sure about this, but I think the co-infections are less common in the mid-central US.
Everybody knows that they're extremely common on the East coast (and probably the West, but I don't remember).
Also there seems to be a lack of studies in the midwest concerning the coinfections.
I'm in the midwest and I don't seem to have any coinfections. I'm talking about symptoms, not lab tests. I never got the co lab tests, but they're highly inaccurate anyway.
Posted by melindacf (Member # 5412) on :
I was also told I had none of the typical coinfections (babesia, bart, myco), but only have EBV, CMV and coxachi B...only..ok, whatever.
But, I have lots of symptoms of babesia, and a few bart symptoms. My llmd wouldn't even discuss those because the labs didn't show them. He said my dizziness, headaches and everything else I have is from EBV. Not sure I can buy all that.
Who knows what all we truly have that they don't even have tests for at this point..
It's really frustrating, as I thought once I had my + WB then I'd be treated and be well, or at least much better...well, that was 8 years ago..
Posted by sixgoofykids (Member # 11141) on :
My testing for coinfections was negative, but I was clinically diagnosed with them based on symptoms and response to treatment of them.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by James1979: I'm not sure about this, but I think the co-infections are less common in the mid-central US.
Everybody knows that they're extremely common on the East coast (and probably the West, but I don't remember).
Also there seems to be a lack of studies in the midwest concerning the coinfections.
I'm in the midwest and I don't seem to have any coinfections. I'm talking about symptoms, not lab tests. I never got the co lab tests, but they're highly inaccurate anyway.
- I think you are right, James. There is definitely less bartonella in the Midwest according to what I see here on this board.
I did manage to pick up Lyme and babesia in Texas myself.
Posted by BugBit (Member # 7829) on :
I believe that there are a few 'flavors' of Lyme, and some of that depends on where you were infected, and more importantly, when. I was infected as a child or in-utero in the mid 1950's. this would have been the first created version after WWII. Yes, some form of Lyme has always existed (related to another thread) but it was modified later. Since then, they have modified and altered and added co-infections and those that get infected now are in much worse shape than those of us infected in the 50's and 60's. In fact, my symptoms as a child and young adult were easily passed off as growing pains and sensitivities until I got re-infected in 1974, and then all hell broke loose, especially after a traumatic event in my 30's. I am now 55 and in better shape than I ever was in my 30's due to diet and treatments I have received over the years. I have heard that there are three main 'types' of Lyme and they depend on when and where you got it.
Posted by canefan17 (Member # 22149) on :
Lyme (borrelia) is simply the gatekeeper that brings the immune system down so other opportunistic infections can surface.
Infections the immune system had been harboring and/or keeping at bay for years. (not just talking bart/babs here - which tend to come with the tic bite)
Something like 90% of the population carries the EBV strain, has parasites, yeast (100% have yeast), etc
These things all of a sudden must be attended to
[ 07-29-2011, 05:21 PM: Message edited by: canefan17 ]
Posted by Robin123 (Member # 9197) on :
I have just Lyme, from a West coast strain in 1981.
I have dialogued with mycoplasma expert Dr Garth Nicolson, and he wonders whether Lyme was mixed with mycoplasma, which would mean another infection in the mix.
To answer James' question, yes, there are definitely co-infections here on the West coast. People are as likely to get them as Lyme.
Posted by nefferdun (Member # 20157) on :
"Straight borella" is funny. It sounds like it should be followed by "on the rocks" as opposed to the "cocktails" most of us are infectd with.
I thought I only had borellia. Then it was borellia and bartonella. Finally babesia and ehrlichia.
One of the most well respected LLMD's said he has NEVER seen a patient without co-infections.
Treatment becomes more complicated when you have co-infections so most of us with chronic lyme know we are fighting multiple pathogens. It is better to err on the side of caution than to ignore the likelihood that you have more than one infection.
Often symptoms overlap so it is hard to tell one infection from another. Often the pathogens go underground so your symptoms are mild. I had no idea I had babesia. I thought I was hyperventilating and going through late menopause!
Tests are not reliable. I tested negative for bartonella but my symptoms were classic, and I responded to treatment.
Posted by jackie51 (Member # 14233) on :
My daughter had lyme and strep. A past infection with mycoplasma but not current co-infections.
Posted by tickbiter (Member # 31829) on :
I am really hoping i have just lyme, i tested negative from an igenex coinfection panel for pretty much everything. I was relieved at first but now i am wondering how reliable the tests are since there are LOTS of strains of bartonella and multiple babesia...does anybody know how reliable igenex is in this regard?
Posted by susank (Member # 22150) on :
I see some Texans are replying to this thread so I will jump in. Mid-central US? Texas is in that realm? How many cases of Bart in Texas?
Igenex testing - I dunno. My last test showed IGG 40 with reference range 40-160. So I guess I am in range. ??
Of course there has to be something cryptic on the page showing the results ie "IGM and IGG antibody levels decrease over time" or words to that effect. That is real helpful.
So maybe if I had tested 5 years ago my levels would have been higher and screaming Bartonella -instead of being right on the "maybe yes maybe no" line? Anyone else pondered this?
Seems I read something years ago about EBV tests - where levels can "fall to undetectable". Even if the virus is still present and active? I don't get it.
I know the Dx's are clinical - but people still test - and the results can be confusing. Are people testing neg or borderline because their levels have "fallen" - as antibody levels are said to do?
Posted by ktkdommer (Member # 29020) on :
I caught bartonella and babesia with Lyme in Wisconsin 30 years ago and passed both coinfections on to my kids.
Posted by Razzle (Member # 30398) on :
I don't test positive for any coinfections, but clinically am diagnosed with Bartonella. I also believe I have (or have had at one time) Anaplasma. I test negative for EBV, HHV, and CMV much to the shock of the doctor who ordered the tests, and I am quite sure I don't have these viruses as a primary issue at this time.
About yeast: Yes, everyone has yeast in their gut - it is one of the organisms that's supposed to be there. It is only a problem when the yeast is out of balance compared to the other organisms that are supposed to be there also.
Posted by twicebitten (Member # 5412) on :
susank,
As far as EBV goes, my tests vary. Doc has it tested at least once per year, every 6 mo. if it is really active.
My levels can show only past inf. sometimes, even when I feel symptomatic and liver is swollen. OR, they can be really high, active infection. I may or may not think my symptoms warrant the tests. It hasn't made much sense to me at anytime.
My pcp, and another doc I consulted with said that I would always have both CMV and EBV, but that they wouldn't always be active. Stress, an immune response, or lots of things can activate it. One doc told me people with chronic EBV that keep on pushing themselves without proper rest and treatment can get lymphoma.
I know there are studies suggesting that, but I'm not so sure how accurate they are. I've also read that EBV and other viruses can cause neuropathy, which is the primary symptom I'm dealing with and have been for 8 years.
So, is lyme killing my nerves, or is it EBV, or CMV? I don't know, or have anyone that does know. My llmd didn't know, my pcp and local docs just say there is no treatment and I will get worse. SO, I travel to get someone to at least try.
I wish you the best of luck in your test interpretations. It is a difficult thing to get 2 docs that agree on test results or even tests that match..
Posted by BackinStOlaf (Member # 23725) on :
I've had co-infection tests multiple times, always negative and I don't have symptoms of them and I don't react to the meds for them. So, I don't know.