Topic: Anyone feel they have a false positive Lyme diagnosis?
sparkle7
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I know that there are false negatives. I've read about people who feel that they were ill for many years & they finally found out it was Lyme all along. They may have had many diagnosis for various illnesses & that nothing really helped until they started treating for Lyme.
I'm just wondering if there are any people who feel that they may have a false positive for Lyme based on a clinical diagnosis or actual tests.
I'm sure if there are false negatives - there must be false positives, as well.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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I had 8 positive bands and was in such denial that I was sick (even though I was mostly bedridden) that I *thought* I may not have Lyme. But I did.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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IckyTicky
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Nope.. no doubts here. I'm of the opinion that most people probably do have Lyme. Co-infections and immune system determines if/when/what symptoms will crop up.
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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The Infectious Disease Doctor I saw feels mine was a false positive because "the symptoms I am having had nothing to do with Lyme Disease." Yeah, okay. She handed me a scrip for antibiotics to make me happy but said they would do nothing for my symptoms.
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Keebler
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- A less than sensitive test can certainly fail to see what is there but when it does see and record what is there, it is certainly there. -
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karenl
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My new LLMD told me he has no idea what I have but probably not lyme - but nothing is sure. I am on lymenet because there is so much overall information here and very nice people. But I have the Fry bug.
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false positives? when it comes to actual testing--no, highly unlikely.
clinically, who knows?
-------------------- 3 months Doxy 8 months of Tetra 7 months of Biaxin/Plaq. 4 months Doxy/Biaxin/Plaq. 5 months Biaxin/Plaq. Back on Doxy/Biax/Plaq On the road to recovery. Trying to make people Lyme Aware....... Posts: 289 | From R.I. | Registered: Jun 2009
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lightparfait
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yes...people can have the antibodies test positivbely, and have already been treated successfully for lyme or have their immune system doing its job correctly and keepng it down.
So yes, people sometimes treat the "positive antibody test" and never had a symptom...as they were tested either by their spouse or mother...and because of fear of the future will treat their family member who tests positive with no symptoms...I was one of those scared mothers...and now am more informed...so please only treat those who have the symptoms.
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I was tested through labcorp and all my IgGs came out absent or negative. But all my IgMs (p41, p39, p23) came out present or positive.
An ID dr. who specializes in Lyme told me that it was a "false positive". He said that since I've been sick for 1.5 years that there would be IgGs present.
When I asked him why the "false positives" came out positive he shrugged his shoulders and said "who knows".
I then went to my ND (not an LLND) who ordered the test to begin with and she said that it was not a "false positive" and that I had lyme and needed to find an LLMD. First I ever heard of ILADS/ IDSA, LLMD etc.
I was initially diagnosed with CFIDS. My symptoms are fatigue, sore/achy ankle and wrist joints (but not all the time), brain fog (most people don't notice it though unless I'm in a bad relapse), heat intolerance, swollen glands, I get worse if I exert myself.
All of these symptoms can overlap with CFIDS or Lyme. I went to a lyme friendly dr. who takes insurance. He said I have a "classic clinical diagnosis of Lyme". When I asked him why he listed my fatigue, sore joints and brain fog.
I do not understand why he thinks it is Lyme over a trillion other things with similar symptoms.
No memory of tick/rash. Sick 1/09. Diagnosed CFIDS 7/09. Diagnosed Lyme 7/10. Posts: 56 | From San Diego, CA | Registered: Jun 2010
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Keebler
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- muddyfeet,
Sadly, the ID doctor was dead wrong. IgG does not have the be present at all. It may be but, with lyme, usually for chronic, the IgM is most evident. Opposite of other infections. But most ID doctors are not at all educated on that point.
Your ND is correct. The lyme friendly doctor said you had a "classic clinical diagnosis of Lyme" - so his assessment and the IgM markers certain are the red flags waving you in.
CFIDS is very often undiagnosed lyme. You may not need an Igenex test with all those positive markers for the IgM lyme test from Labcorp.
You need to see an ILADS-educated Lyme Literate MD. Or ILADS-educated LL ND. Lyme is a clinical diagnosis. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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- VERY important to read:
Dr C's Western Blot explanation is discussed here:
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" -
Posts: 48021 | From Tree House | Registered: Jul 2007
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sparkle7
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I think that there are false positives - probably mostly due to clinical diagnosis'.
I don't think everyone that ends up here is in Lymeland so to speak. I have to agree that people here are intelligent & up on all of the latest treatments, alternative & standard. I like to read through many of the threads because they have some good info.
I'm just at a point where I don't think I have Lyme or co-infections. I've been dealing with this crap for 15 years or so - maybe more. I was diagnosed with CFS, Fibro & then Lyme & Babesia.
None of my tests have been conclusive & none of the abx I've taken have done anything - positive or overly negative (except for the usual side effects). In my case, I'm thinking that it has all boiled down to some kind of parasite issue & the toxins from the parasites have made me ill. Probably some kind of fluke...
I just thought I'd put this out there for anyone who may be going through the same thing or who has doubts about "everything" being Lyme.
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seekhelp
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I thought Art was helping you big time Sparkle7. You've praised it many times. Why do you not believe possible Babesia if so? if you're not taking pharmaceutical anti-malarials and seeing benefit from Art.....
Yes, Art could treats other stuff, but it's suspicious.
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bcb1200
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I sometimes think maybe it's not lyme. Then I have to remember that I'm CDC positive on the Igenex IgM. AND..my brain spect was abnormal.
If it wasn't lyme & co, then my brain would be "normal"
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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I for one feel I was diagnosed with Lyme incorrectly (clinically). I never had even close to a positive test either CDC or Igenex. Never tested positive for anything including virus's
I was really sick and did do treatment for 30 months but most of my symptoms had already disappeared even before I began abx. I am not sure what I had but it was some type of infection but pretty sure not Lyme since after 30 months the LLMD basically told me I needed to see someone else (endocrinologist or neurologist) and that is when I stopped treatment.
I still come here because there is alot of information and maybe I will find out what really happened to me 6 years ago..
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seekhelp
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Kim, did you ever go through a mitochondrial / neuromuscular work-up? I can't believe that office went 30 MONTHS under that assumption with no response. That's my fear.
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sparkle7
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The artemesia is also anti-parasite. It's really quite an amazing herb. I think my symptoms all come down to being infected with some kind of parasite(s) - probably flukes.
I believe that the toxins created by the parasites were what made me ill all of these years.
Abx did nothing to help me. I took them for 9 months. I'm now taking an anti parasite blend, ground up cloves, pumpkin seeds & artemesia on & off (plus a few other things). I seem to be feeling alot better but I feel like I have some work to do with detox.
If I'm correct, it will take time to get the toxins out of my body. These things may have been living in me for a long time.
The symptoms of Lyme fit the bill for a number of ailments. If you go to a doctor in a heavily infected area & they specialize in Lyme - the are going to think everyone has it.
When I showed my doctor actual photos of "things" that came out of me when I took the anti-parasite herbs - he didn't know what to say.
I spent over $10,000 on tests. Nothing was conclusive.
I used to eat alot of watercress - raw & cooked. I bought it at an Asian market near where I used to work many years ago. It was easy to cook or put in a salad. Watercress is where flukes live...
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sparkle7
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PS - I never had any typical symptoms of babesia. My doctor just seemed to be pulling rabbits out of hats for that diagnosis.
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seekhelp
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Well that certainly sounds like a bad doctor. I wouldn't be happy about that approach.
quote:Originally posted by sparkle7: PS - I never had any typical symptoms of babesia. My doctor just seemed to be pulling rabbits out of hats for that diagnosis.
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sparkle7
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He based it on my symptoms & told me that a number of people with "fibromyalgia type" symptoms may have babesia & do respond to malerone & zithromax. He said it may be worth giving them a try for a couple of weeks to see if I feel any different.
He didn't know anything about the visual proof of parasites that I showed him nor did he recommend anything for them. I had to ask for a prescription for ivermectin & he gave me the incorrect dosage. The drugstore couldn't fill it & I went to a few.
I figured I'd be better off sticking with my own protocol & skipping the ivermectin. It's pretty toxic so I just figured I'd be better trying the herbs & seeing how it goes with that first. If needed, I could go back to the ivermectin.
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nefferdun
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When I felt the lyme symptoms were gone, just bartonella persisting, I tested VERY positive for borrelia. I even passed CDC guidelines and I had been told that no one was testing positive with this strain so not to bother. I was surprised. I had stopped having my monthly lyme flares so I felt borrelia was under control.
Someone suggested my immune system recognized the bacteria and that is why I test so positive. I think that is true. I am not as sick as the tests would indicate. I am actually pretty close to well because my body is fending it off.
I am not a scientist but the limited way I understand it is, the test measures antibodies which attach themselves to different parts of the spirochete body. So the test is not looking for the actual spirochete itself, just for your immune system having made antibodies against it. You could have been infected and recovered.
In my case I believe I had a very strong positive test because my immune system is very good at identifying borrelia now.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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nefferdun
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double post
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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sparkle7, I've doubted my Lyme diagnosis from the beginning. I still doubt it from time to time. I've only been on abx for ~ 9 weeks. I was dx with Fibro many years ago, but CFIDS better describes my symptoms, especially the intolerance to exercise and immune dysfunction. I had several positive bands on the IGX IgM, but chronic EBV can cause a positive IgM result (notes IGX). I had only 2 positive IgG bands, 31++ and 41++. Maybe that just shows I was exposed to a tick one time? Maybe the only way to tell if it's CFIDS is to try a good antiviral.
I ordered the kit to be tested for the XMRV virus, but you have to go off all abx for at least 3 weeks before doing the test. A doctor has to requisition it. It costs $450 for the virus culture and takes several weeks to get the results back. I noticed this lab also does the C6-Burgdorferi test. I wonder it that is more accurate than the Western Blot?
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sparkle7
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kim812 - have you ever found anything that helped?
It's tricky since the tests are not accurate. I figure if the test is not conclusive & the abx don't work or do anything that make you feel that there's a change or improvement in symptoms - it may not be Lyme.
I know there are many false negatives & it a concern but there has to be false positives, as well. It is something to consider.
Nefferdun - it's sort of "crazy making" to think that your test was non-conclusive when you were most ill with Lyme symptoms & conclusively positive when you felt better!!! How do we decipher that?
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The C6-Burgdorferi test is supposed to be able to detect Lyme at ALL stages, and it is supposed to be extremely accurate. Why do we still rely on the Western Blot which can give false positives in cases of EBV, HSV, HCV, and Syphillis (and who knows what else? maybe XRMV?????)
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seekhelp
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That test is not that good!!!
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I have not found anything that has helped. The doctors have no clue what is causing my problems. In fact I saw the endocrinologist today and she says I might have some contracted some strange virus that is still running around in my body.
There are many times my wbc is very low and then I get re-tested and it is back to normal. Something is still messing with my endocrine system but no one seems to know what to do.
I agree that living in a lyme endemic area is why I was diagnosed with Lyme. I never could relate to what people were saying on here because I didn't fit the symptoms at all.
seekhelp- I have never had a mitochondrial/neuromuscular workup but am extremely interested in what it involves and what type of doctor could do this. I believe I would still be on abx if I hadn't put a stop to the treatment. The LLMD I was seeing I am sure would have continued me on even though I had no response.
Posts: 343 | From North Carolina | Registered: Oct 2008
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I did want to add that I did have many symptoms that are on the Lyme symptom list but they are also the ones that appear on almost any chronic illness list.
I still continue to suffer and I mean suffer from chronic physical exhaustion. The kind where you have to just stop and rest. The kind that isn't relieve by naps, sleep or anything else. It is all encompassing and sometimes I feel as though I will just collapse and die. It is horrible and sometimes very scary.
It is hard to get through to the doctors that it is not a fatigue where I must sleep hours and hours. In fact most of the time I can't sleep at all.
I also wanted to add that my first symptom was excruciating cramps in my calf. It just happened one day and lasted 3 straight weeks. It was so painful and nothing helped. Then I had a strange 24 hour flu and the rest is history...
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seekhelp
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Kim, send me a PM and I'll try to supply some info for you on mitochondrial issues. That is very, very concerning if that top LLMD never considered this after 30 months and to hear they still would've had you on Abx. When is enough, enough?
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Until we have more accurate antigen tests, there are going to be "false positives" both on antibody tests and clinical diagnoses. This does not mean that a person isn't sick or that nothing is wrong, but rather that the issue causing illness isn't lyme.
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seek- thanks for the pm..i messaged you back. No, the doctor never ever mentioned anything about mitochondrial issues....
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lightparfait
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Autonomic Response Testing can more acurately pinpoint what y ou are dealing with curently. Dr K. teaches this, so find a doctor that does ART, which is a deeper and newer form of muscle testing that tests actaive frequencies...things your body resonates with as active...
Blood tests are much less accurate for lyme. IF the lyme bugs are causing you issues, you will know with ART testing.
Posts: 1009 | From NJ | Registered: Aug 2009
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I was recently diagnosed with Bartonella. My doc thinks that the Bart can stimulate production of antibodies to all kinds of things besides Bart. He's speculating that the Bart can confuse the Lyme testing; he said that he was probably going to be treating the Bartonella/conifections first and then concentrate on Lyme's in new patients.
Myself, I was treated for Lyme, we thought we got rid of it. After a few months I started to feel sick again. After nearly 3 years I was diagnosed with Bartonella. A recent retest for Lyme's showed I'm still CDC-positive. We're not sure at this point whether it's a false-positive due to the Bartonella, or my Lyme's has relapsed. We have to wait til treatment for the Bart is done and wait a few months and retest to see if the antibodies go down or not. Most frustrating to be sure...
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seekhelp
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It really seems far-fetched Bartonella can cause false positives on everything! I thought Bart was immuno-suppressive and may result in false negatives?
Is your doc telling me I can test positive for TB, AIDS, and gosh knows what else because i have Bart even if I never had them? Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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bcb1200
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quote:Originally posted by Marrit: I had only 2 positive IgG bands, 31++ and 41++. Maybe that just shows I was exposed to a tick one time?
Band 31 is highly specific for lyme. So specific that they tried to make a vaccine out of it. And it takes at least a year to show up. I say you have lyme.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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CD57
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What about mold? Is anyone considering that is why they might not get well, or have mysterious symptoms?
I have been a big doubter of this all along, as I have never seen mold in my living environment, or thought I had been around it. I have never had respiratory problems, which I thought were requisite for mold problems.
I have been in tx for Lyme and co (bartonella HARDCORE) for 3 yrs, Iv and oral. Recently we ran my HLA genotype and some of the blood tests that Shoemaker looks at. Well, I was positive for EVERYTHING as regards biotoxin illness! A practitioner told me that this was likely suppressing my immune system and why I can't kick Lyme and co.
I haven't started tx for it yet but suppose I will be on the dreaded CSM and other stuff, whilst looking in my home for mold.
Anyway, pls consider. I pooh poohed this big time.
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sparkle7
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I have no doubt that people have Lyme & co-infections & all kinds of things. Mold is another thing. It's just that if we don't know what it is - exactly - we may be going around & around treating something we don't have. It easy to mis-read herxes from symptoms from side effects...
CD57 - have you tried putting those mold culture tests in your house? I think you can buy them from mold remediation places on the internet.
Someone who used to post here cleaned up their house with ozone. You can get ozone machines & in this person's case - I think it really helped. I don't know too much about it since I never actually did it.
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sparkle7
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PS - lightparfait - I don't know if I could find a practitioner in the state where I live. I'd have to travel. I'm going to look into it further. I had an Asyra test done with hair sample (remotely) & I don't think it was very accurate.
I do my own dowsing but it's nice to have someone objective to verify the results.
It would be nice to have some kind of list as to which medical lab tests are really accurate as opposed to which are not accurate. All my old tests are in storage - so, I'd have to dig them out.
Does anyone know the percentage of accuracy on the various tests we all get? Please post any info if you know.
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seekhelp
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Those home mold kits are a joke I've read.
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glm1111
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Sparkle,
I just wanted to chime in here. I was dx with Lyme, bart, babs and erlichia. I do believe the tests were accurate especially since I was bitten so many times and had a fully engorged tick removed from my arm.
The LLMD I had sent my tests to several different labs and I had a bullseye on top of my head. Sorry, except for Igenix, can't remember the other labs.
I strongly believe that there is a MAJOR parasitic component to this disease. I was on abx for 4 yrs incl. 6 mos of IV Rocephin. I think I needed them in the beginning, but for some reason, it's been the antiparasitics that are putting this into remission for me.
Could it be that Lyme and Co responds better to antiparasitics? I have done my own dowsing over the yrs and I responded strongly to all of the infections.
Had a ton of parasites exit as well. No doubt that these ticks are carrying all kinds of stuff that we aren't even aware of,
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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seekhelp
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I don't think your accuracy data exists Sparkle7. Only TBI patients/docs seem to have the attitude all tests are worthless. To mainstream docs, tests are golden.
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I am wondering why I was never tested for parasites, mold etc..from my LLMD if these are suppose to be a big factor in Lyme.
I was only tested for co's and virus's.
glm-what kind of antiparasitic treatment are you on? I am believing I never had Lyme but some other infection so I am interested in this too. I am still trying to figure out what is wrong with me and have to do my own research since my doctors have been useless...
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sparkle7
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kim812 - I think the parasite tests are just as questionable as the Lyme tests... It's probably better to just take the anti-parasite herbs & see what happens. I got quite ill the first time I started with all of this parasite detox, liver detox, etc.
I suppose that getting worse when you do a parasite cleanse would be meaningful. If you actually see things coming out of you it's meaningful, too. You may not always see something like a 6 ft worm in the toilet... (LOL)
Some here actually have seen things like this. They tell their doctors & the doctors are stupefied. I actually sent my doctor about 10+ photos of things & he didn't know what to say. If you kill a parasite, your body may digest it so you wouldn't necessarily see it. Some are microscopic, too.
If you decide to do a parasite cleanse - go slow & be prepared that you may get ill (or worse than you usually are). It takes time. I've been experimenting with this for over a year now & I'm still seeing clues that I have to continue.
The parasites emit toxins & when they die, they are left in your body. You body has to get rid of them & it causes toxins. I believe these toxins may be the cause of some people's symptoms.
There are links between many parasites & illnesses like cancer & other negative effects on the body. There aren't alot of doctors who are familiar with this field in the US. Most people don't think this sort of thing exists here.
There are many good, inexpensive herbal treatments for parasites. Just do a search & see what you can find. It's good to try a few of them so the parasites don't build up a resistance. Mainly, it's green, black walnut hulls, cloves, artemesia or wormwood. Some have added ingredients to absorb the toxins.
There are other blends from the Amazon which can help with blood parasites like malaria, etc. I haven't tried any of these, yet, but some people do well with them.
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glm1111
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According to Buhner, you don't build up a resistence to herbs. Don't know for sure, but I decided to just keep taking the antiparasitic ones and not stop.
This is definitely working for me. I have done:
Humaworm,
Dr Clarkia,
Hanna Kroeger
and am currently doing
Parastroy
which also has enzymes as well as a number of other herbs. Having REALLY good results with this. These parasites have layed thousands of eggs and larva in the G.I. track and that's why you have to be so persistent with antiparasitics.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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sparkle7
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Gael - it's not you who build up the resistance to the herbs - it's the parasites... LOL
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Thanks to all for the great information. It is something I really need to look into and do some research on. I don't want to give up even though I am sooo tired.
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For myself, I tend to think I probably have Lyme, but sort of definitely have some tick borne illnesses -- I use that distinction, as sometimes who knows which disease is really causing our symptoms. Even a positive Igenex just shows exposure, not necessarily that the person has active Lyme.
I had a positive Igenex IGM, although it was pretty much the min. for a positive. But I also have positives for several co-infections too. And I also happen to test positive for Bartonella, which quite often doesn't show up in testing -- got the sore heels as further proof.
I think a followup question may be: not if we perhaps have a false positive, but is it Lyme, or some other tick disease causing our symptoms? Or perhaps Lyme + friends has been treated as best as they can be, and whatever symptoms remain is from damage done, and further meds won't help a whole lot? The latter is in the back of my mind sometimes, as at a certain point I expect further meds won't help much, even if some symptoms remain. And there is always the possibility we have Lyme + coinfections, treated them fully, yet have symptoms caused by some other health problem.
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quote:Originally posted by seekhelp: It really seems far-fetched Bartonella can cause false positives on everything! I thought Bart was immuno-suppressive and may result in false negatives?
Is your doc telling me I can test positive for TB, AIDS, and gosh knows what else because i have Bart even if I never had them?
I'm simply reporting what he said. He had a patient who had antibodies to a particular Bart species, but when the Bart was actually DNA sequenced, it was a different species.
I got the impression from his rather technical explanation of what was going on that the Bart can provoke production of antibodies that are similar enough to what the Western Blot looks for that it can confuse the test.
I doubt that he meant it provokes antibodies to very different diseases. I didn't totally understand him, but I do clearly recall the part about Bart possibly confusing the W.B. testing.
Posts: 131 | From PA | Registered: Aug 2007
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
quote:Originally posted by sparkle7: Gael - it's not you who build up the resistance to the herbs - it's the parasites... LOL
Thanks for the correction. That's what i really meant to say. Darn Lyme brain.
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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sparkle7
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posted
I guess the thing with parasites - is that we may be infected with several types. So, it's good to try different herb combinations (or drugs, if you more inclined towards that).
With testing, it would be good to know a ballpark percentage of accuracy for each test. That way we could gauge the accuracy. Since the symptoms can be many different things & the tests are not accurate - It's really difficult to know if the drugs or other treatments we are doing are really working.
re: Or perhaps Lyme + friends has been treated as best as they can be, and whatever symptoms remain is from damage done, and further meds won't help a whole lot?
I can see that we may be dealing with damage done by the various pathogens after treatment. This could be true...
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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quote:Originally posted by seekhelp: Kim, send me a PM and I'll try to supply some info for you on mitochondrial issues.
How do they test for mitochondrial problems? My cardiologist was interested in getting me tested, but the only tests she knew of were genetic. And unfortunately my insurance wouldn't pay for them and they were very expensive (so I never got it done).
I guess a muscle biopsy could detect a mitochondrial issue too, but I have a feeling most insurances wouldn't pay for that either.
Posts: 584 | From NY | Registered: Feb 2009
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lululymemom
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Member # 26405
posted
quote:Originally posted by billclo: I was recently diagnosed with Bartonella. My doc thinks that the Bart can stimulate production of antibodies to all kinds of things besides Bart. He's speculating that the Bart can confuse the Lyme testing; he said that he was probably going to be treating the Bartonella/conifections first and then concentrate on Lyme's in new patients.
Myself, I was treated for Lyme, we thought we got rid of it. After a few months I started to feel sick again. After nearly 3 years I was diagnosed with Bartonella. A recent retest for Lyme's showed I'm still CDC-positive. We're not sure at this point whether it's a false-positive due to the Bartonella, or my Lyme's has relapsed. We have to wait til treatment for the Bart is done and wait a few months and retest to see if the antibodies go down or not. Most frustrating to be sure...
Bartonella henselae 1:100 Posts: 2027 | From British Columbia | Registered: Jun 2010
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lululymemom
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Could it be possible to have Bartonella in the absence of Lyme?? I have never had a tick bite, don't ever recall the typical Lyme symptoms but tested positive by IGENEX and CDC standards. Just now, seen photos of Bartonella bumps which is what I have had for the past 10 years. I have all the Bartonella symptoms but don't respond to typical treatment for Lyme.
I have always had cats and had bites from them as well.
I haven't found anything online that even addresses this... anybody have any insight?
posted
It sure is possible to have Bart w/o having Lymes. My doc has several patients who have Bart and don't seem to have Lyme (though with the Bart confusing the Lyme testing, I wonder about how sure he is of that).
Posts: 131 | From PA | Registered: Aug 2007
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lululymemom
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This would be a good question to pose to the Igenex Lab.. It seems plausible that having an active Bartonella infection could somehow influence the Western blot test.
Billclo: Have you had any success or improvement treating only the Bart?
Bartonella henselae 1:100 Posts: 2027 | From British Columbia | Registered: Jun 2010
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WildCondor
Unregistered
posted
Testing is almost all total garbage. Lyme is a CLINICAL DIAGNOSIS. Based on response to treatment and exposure to ticks is how you should be monitored. The rest is who knows what.
quote:Originally posted by lululymemom: This would be a good question to pose to the Igenex Lab.. It seems plausible that having an active Bartonella infection could somehow influence the Western blot test.
Billclo: Have you had any success or improvement treating only the Bart?
Bunch of success. Prior to treatment, I had very low energy - had to take an hour nap after lunch to be able to do anything the rest of the day (having to take care of a 2-year old is taxing to say the least). I also had classic Bart skin streaking, and I'd also get these funky red areas where pressure was applied to the skin that would take 4-6 days to fade (doc didn't know what to think of them). I also had significant mental clarity issues.
I started treatment with Zithromax 600mg, Rifampin (started at 300mg/day, ramped up to 900mg/day now), and Boluoke 4 caps/day. I'm on month 3 of an estimated 9-12 month treatment.
I have had some issues with the Rifampin messing up my hormones (felt like I was PMS'ing all the time), acne, decreased libido. After a while it's stabilized and I feel better. A nice benefit has been that the Rifampin appears to be lowering my cortisol levels, which were slightly high before. I can now lose weight, which was very difficult before treatment started.
Energy has gone up - it peaked in month 1 of treatment, went down slightly since (that's probably due to the Rifampin). Mental clarity is way up, the red streaks are rare now, and while I still those funky skin splotches when I put pressure on the skin, they fade much faster now. I only need to nap occasionally after lunch, and when I do, it's a quick 15 minutes and I'm good to go the rest of the day.
I think I'm making good progress, though it remains to be seen if it's going to cure me or not. I sure hope so. Posts: 131 | From PA | Registered: Aug 2007
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posted
I had a positive Elisa test and I had the Western Blot test today that's being sent to Igenex. I understand that Lyme is a clinical diagnosis. I am anxious waiting for an answer. Does anyone know what the probability is for a false positive on the Elisa??
Posts: 8 | From Michigan | Registered: Jul 2010
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sparkle7
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posted
Not sure about a false positive on Elisa test... Maybe someone else knows.
Yes - I think it is very possible to have bart & not have Lyme! I'm pretty sure you can get bart from fleas & maybe other insects. It's called "cat scratch fever".
Many years ago (over 30), they thought my mother had cat scratch fever - it turned out to be lymphoma...
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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nefferdun
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posted
Just want to clarify I did not originally have a test - I was treated because of symptoms and I could remember the rash.
I got the test three years after the bite and I was CDC positive. But I was feeling much better lyme wise. My bartonella symptoms were raging but the lyme was quiet.
I feel my body's immune system was working against the lyme keeping it under control. As lyme can disguise itself making it unrecognizable to the immune system, that would be why you would be very sick and test negative. The test is for antibodies, not that actual parasite.
So it just makes sense to me that having a strong antibody response to borellia could mean I am fighting the disease and NOT as sick as the person who tested negative because their immune system has not figured out where or what the pathogen is, so borellia continues to rage through their body.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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I wouldn't be happy about that approach.![[Frown]](frown.gif)
We're not sure at this point whether it's a false-positive due to the Bartonella, or my Lyme's has relapsed. We have to wait til treatment for the Bart is done and wait a few months and retest to see if the antibodies go down or not. Most frustrating to be sure...
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