Does anyone here feel that they have been misdiagnosed with Lyme after receiving a positive IgeneX test and an "official" Lyme diagnosis from an LLMD ?
I know this will probably be a very unpopular question, but it could help me sort things out.
Concerning my particular situation, there are a few facts that support the diagnosis of Lyme and more facts and experiences that don't.
I did test positive with IgeneX more than a year ago and an LLMD did give her opinion that I had Lyme.
BUT .... the entire time I treated with antibiotics ( 4 different oral kinds for 7 months) and "Buhner's" protocol for 12 months and later colloidal silver, Grape Seed Extract, Cowden's herbs and now food grade hydrogen peroxide ... I NEVER HERXED or felt anything remotely like what most people describe as a herx.
Secondly, I have none of the most common Lyme symptoms ... fatigue, headaches, or joint pain. My main symptom has always been anxiety (and still is) ... in the beginning when I had the first panic attack, I had other symptoms ... but they could easily be attributed to anxiety alone. Even with all the treatment, the anxiety never faded (anxiety only improved later through addressing certain stressors).
Really the only two things supporting the Lyme diagnosis was the IgeneX test (came back VERY positive) and the fact that I did go hiking regularly without taking a lot of "tick-bite precautions". NOTE: I did test negative for Lyme with the Florida Labs test.
Does anyone know of a friend or family member who tested positive with IgeneX (or any other lab) and feels that they may not have had Lyme ?
Posted by Nutmeg (Member # 7250) on :
Hi lightwise,
That seems like a very fair question to ask in your situation.
Based on your atypical symptoms, you may never have known you were exposed to Lyme if you hadn't been tested. Your immune system may have been strong enough to form antibodies and to keep you from getting sick.
I'm starting to wonder if it's possible to *have* Lyme and/or coinfections, but not be sick with them. Not the norm, but maybe a possibility.
I'll be interested to see what others say.
Take care, Nutmeg
Posted by bettyg (Member # 6147) on :
quote:Originally posted by Nutmeg:
Hi lightwise,
I'm starting to wonder if it's possible to *have* Lyme and/or coinfections, but not be sick with them. Not the norm, but maybe a possibility.
nutmeg,
i agree with your statement above! i've had chronic lyme 39 years; misdiagnosed for 34.5 yrs!
after reading many stories here, i was NEVER BEDRIDDEN for a long time except for my initial diagnosis of MONO later to be called epstein barr virus!
i've been sick and missed a heck of a lot of work; one of the biggest sick leave users and had around 10 plus MAJOR SURGERIES during that time before i left work due to my health 10 yrs. ago without benefits after working 30 yrs., 7 months.
during that time i was put on abx for my many misdiagnosed symptoms/diseases but NOT prolonged use. i think my immune system was pretty good at that time to fight off major problems like many here go thru.
Posted by Leelee (Member # 19112) on :
quote: I'm starting to wonder if it's possible to *have* Lyme and/or coinfections, but not be sick with them. Not the norm, but maybe a possibility.
My LLMD told me last week that was definitely a possibility. He said people can be carriers and not have symptoms.
I think it is realisitic of you to ponder your diagnosis since we all know that Lyme is such a confusing disease.
On the other hand, Igenex testing was substantially positive and Lyme affects us all so differently.
I wish you the best of luck in your health.
I'm sure a lot of us have had the same doubts as you.
Posted by feelfit (Member # 12770) on :
were you tested for co-infections? Were you treated for Bartonella? Anxiety is a major component of Bartonella.
Is your anxiety now under control? If so, and you are symptom free at least 2 months, you can consider going off treatment.
Posted by Starfall1969 (Member # 17353) on :
I think it's a legitimate question.
And I think it is possible to be a carrier but not be sick with it; it all depends on how well your immune system deals with infectious agents.
Something I just thought of with regard to this: You know when they do the TB tine tests?
They are checking for exposure, right?
But even if your tests come back positive, it doesn't necessarily mean you've got or will be sick with TB, right?
It just means you've been exposed and are carrying the infectious agent, right?
So if you can carry something like TB and not get sick with it, then it's certainly possible to carry Lyme and not be outright sick with it.
Just my early morning thinking.
Posted by Soleilpie (Member # 8481) on :
It's possible that you have Lyme as well as something else. There's nothing that says you can only be sick with one type of illness at a time. Maybe you have Lyme as well as some anxiety disorder not related to Lyme and its co-infections.
Posted by swachsler (Member # 18155) on :
I had the same thought re: bartonella and anxiety.
Posted by kelmo (Member # 8797) on :
My daughter has been very ill. Her symptoms covered the list with the exception of testicular pain.
Yet...she never tested positive for Lyme.
My son's new girlfriend moved here five years ago from PA. She has tested positive for Lyme, but she is able to work full time, carry a full schedule of college classes and have fun.
My daughter is curled up in a ball on the couch. She asked this girl if she ever has pain. She said, "when I took doxycycline, I got a little achy".
My daughter said, "I think I could run a marathon if I were just achy. I could only HOPE to someday be just "ACHY".
It really affects us all different.
Bartonella really gives you psyche issues. My daughter has terrible anxiety, which brings on OCD and insomnia/racing thoughts.
You might check into that.
Posted by TerryK (Member # 8552) on :
Leelee said: people can be carriers and not have symptoms.
I've been told the same thing.
Terry
Posted by glm1111 (Member # 16556) on :
Anxiety is a symptom of parasites. Check out the symptom list at
It's funny - I am the reverse... I never had a full positive on any of my tests for anything. I don't recall any tick bite. My worst symptom is pain.
I've been in constant pain for probably 12 years now. I tried abx for 8 months & it didn't do anything except make me get digestive problems & thrush... Not much of a herx or improvement or anything.
I'm at the point where I think all of the tests are not accurate. I don't know how we get through this & treat what is wrong with us.
When there may be Lyme - there could also be a whole host of other issues.
Posted by Keebler (Member # 12673) on :
-
The toxins from any infection can cause anxiety.
In addition to anxiety being a symptoms of parasites or other toxic infections, it can also mean that you need better neurological support with B-vitamins, magnesium, calcium, and fish oil - along with the other measures.
-
Posted by MY3BOYS (Member # 17830) on :
have been thinking this same thing, but about my hubby and kids
i am + even by cdc standards and Very sick with it no doubt
but hubby and 2 of 3 kids seem very healthy and have very strong immune system responses when it comes to other things, rarely get sick
so, if this is even slightly opportunistic in regaurds to immune response and immune modulation, that i could spectulate my immediate family is ALL carriers and my immune system is zapped so i then become one to show active infection! ?
i only make igm antibodies to all so, if i tested with strong igg antibodies this would be good and show my body starting to fight back
always good to good to educated, and think we know our bodies best
(will say, did get hubby to go for initial work up to see, waiting on his results, then on to oldest son)
just another previously smart person trying to figure this junk out!! good to ask questions and i try to back up mine with research
Posted by lightwise (Member # 10661) on :
Thanks for the opinions. I will look into Bart ... that was my next move. I might try RIFE for that.
Posted by monkeyshines (Member # 6406) on :
I do wonder the same thing.
I've been in progressively worse constant pain for more than 8 years, but nothing I've done in terms of treatment has helped.
I had a weak positive w/ Igenex and many negatives through other forms of testing.
I've been bitten many times thru my life, but I still do wonder, just because what seems to help others hasn't me.
But it's such a poorly understood disease, I feel like how can we know for sure? And my LLMD is the only dr. (of many) who has tried at all to get the root of what's wrong with me.
monkeyshines
Posted by klutzo (Member # 5701) on :
I don't know if this helps or not, but I know someone who consistently had negative Lyme tests but was clinically diagnosed with Lyme anyway, based on some of her symptoms.
After 4 years of constant ABX wih NO herxing whatsoever, she is 95% recovered and living an almost normal life.
So, you can have Lyme without herxing. I admit to being insanely jealous of those lucky folks!
klutzo
Posted by Amy C (Member # 19297) on :
Hello,
I have been on doxy since Oct 08. Just went to 600mg a day about a month ago. Not sure if it's because I am not being treated agressively but I don't herx much either.
I have had days (especially when I 1st started doxy) that I have felt a lot worse. Or days when my normal symptoms are worse. But nothing like I have heard about from others.
I have often wondered how do I know if they are a herx or just a bad day? Or how do I know if I am getting better?
I did test CDC positive and I have many symptoms so I don't doubt I have it. I just doubt if the meds are working or not.
We just tested our 2 boys and their tests were weakly positive. My one son has many symptoms including recent arthritis like ones. But my other son has less symptoms. Most of his could be explained by other things.
It's hard without having accurate tests!
Amy
Posted by CD57 (Member # 11749) on :
I think it's not unreasonable to consider that Lyme may not be your problem. I was told that many many people are carriers and they do not become asymptomatic. But when you take Lyme plus coinfections and throw these at a healthy immune system, chances are it's going to become overloaded at some point. SO....the point being multiple infections may be driving symptoms. Perhaps if you had Lyme alone it may not necessarily become problematice. Have you been checked for coinfections? Rarely does Lyme come by itself, is my understanding.
Posted by disturbedme (Member # 12346) on :
I really like what Kelmo said. And I'm like Kelmo's daughter. I was very ill when I first fell ill but never tested positive and still don't (the only thing I ever tested positive for was the mystery bug on a Fry smear). I think it's because my body doesn't make antibodies to anything very well. The only reason I believe that I have lyme and co-infections is because I've gotten better from where I started two years ago (and Babs treatment has been the MOST helpful so far, and Bart treatment coming in second most helpful). But believe me, I doubted for at least a year or so that that was even my problem.
It's very possible to have lyme but have very few symptoms - there are MANY people like that.
And also, just because you didn't herx doesn't mean you weren't getting better. And it doesn't mean the medicine wasn't helping. There are a few people who never herx on treatment but slowly get better instead. And those people are very, very lucky. Herxing is awful and no fun.
Posted by lightwise (Member # 10661) on :
Thanks again for the replies ! They are helpful indeed.
Posted by Munch (Member # 11323) on :
This is a question that I've asked myself a million times over. Treatment is very expensive.
I have found that I'm one of those people who DO NOT herx. My LLMD says that not everyone has a herx. This is normal for some people.
I did 1/2 dose of the Buhner protocol and did not herx with that either. I've tried OLE, AVs, and some of the Cowden herbs and still did not herx.
Before my doc explained this, I didn't think I had Lyme and that it was a misdiagnosis especially when I didn't react to Flagyl at all. Then about 2 months into it one tablet 3X a day, I got hit with major depression.
I have NEVER herxed the way some people describe it. I have all of the typical Lyme symptoms which are now gone after close to 3 years of Abx treatment, heparin for 10.5 months, antifungals, probiotics, and hormone replacement therapy.
My tests are all negative but I do have some positive bands. I do remember having one EM rash on my thigh, a strange hand rash after a trip to the Ozarks, and 3 small EM rashes on my shin after going to Michigan as a teen. All of the rashes were written off as spider bites, ringworm and eczema.
I now believe that I've been bit multiple times by ticks. Like you, I also went hiking zillions of times and took no precautions against ticks. Mainly because "We don't got no Lyme in _____fill in the blank ____."
Have you had any hormone testing done? When my thryoid and adrenals were not working and I was not on the right replacement doses I had tons of anxiety. To the point where I couldn't sleep at night.
It is very human and normal to want some sort of vindication. We all have to know that we are on the right path. It's also normal to wonder if this whole thing is one big rip-off. Only you can know and decide if something is working for you or not.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by feelfit: [QB] were you tested for co-infections? Were you treated for Bartonella? Anxiety is a major component of Bartonella.
absolutely
Posted by stymielymie (Member # 10044) on :
yes as like many other diseases ie Aids, you can have a sub clinical case of lyme disease where the body is able to form antibodies against bb. as in any illness if the immune system is strong enough, subclinical symptoms pass and life goes on. as in AIDS, hepatitis a,b,c,and d you can be a carrier and never show full clinical signs. you may still have dormant bacteria present in your system that could emerge at any point. many lymies with long term lyme get this occurance. we get some symptoms,get better then it sits and simmers until one day you have full blown lyme. if you have ab to lyme you have been exposed but that does also not mean you have active lyme.
docdave
Posted by microw (Member # 14702) on :
I will tell you, the girl I am working with who tested + for Lyme has something alright, but it is not Lyme. I am still trying to figure whether it is fungal, bacterial or parasitic. I am leaning toward some weird bacterial parasite.
Posted by Wimenin (Member # 15294) on :
While a very legit question, my first thoughts were this... what made you get tested for lyme to begin with?
Most people get tested for lyme because they have either experienced the symptoms, saw the tick, or are being tested for everything and just did the lyme test as a part of a generic testing for everything.
So why were you originally tested?
If your only symptom is anxiety, then learn to counter the anxiety, and enjoy your life. But, if you have anxiety and other oddities, then perhaps you need to research deeper.
I don't believe that lyme is a catch-pot for all ailments in the world. I think all too often if people don't know what else it can be, they assume lyme, even if they've never been bitten, never tested positive, and don't have some of the hallmark A-typical symptoms.
Is it possible you have a coinfection? Yes. Is it possible you had lyme at one point but its no longer active, sure. Is it possible that you have lingering anxiety from a prior bout with lyme that affected your brain, sure. Maybe your anxiety is the last remnant of lyme, or maybe its not related to lyme at all, but other injections, physiologicaly, or mental.
The big question is really...how do you feel? Theres no sense in treating for lyme if you dont have symptoms...
Posted by lightwise (Member # 10661) on :