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has anyone been treated for Lyme by LLMD and turned out to have a different condition?

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Lyme Disease
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Posted 8/14/2013 2:56 AM (GMT 0)
Obviously Lyme symptoms are so numerous and overlap with many other medical conditions. My biggest fear is of being treated with many long-term antibiotics based off of inconclusive Lyme tests, and not really having Lyme, or having a Lyme relapse that reemerged as the result of another medical problem. Such antibiotic use could compromise or worsen other medical conditions.

I'm curious if anyone has received a clinical diagnosis of lyme (or coinfections) by an LLMD and think or know they ended up having other conditions.

For example: what if someone turned out to have cancer but was treated for Lyme with antibiotics for extended periods of time. That would certainly do a huge disservice to the patient all the while the cancer would probably worsen and spread and beat down the immune system.

I'm just a bit nervous after recently going to an LLMD, I feel that if I came in with any symptom he would say it is Lyme and treat it as such. (I went to him once before and started 2 antibiotics- ceftin then zithro which had no positive effect and no herxing.) This would be a godsend if it is indeed Lyme, but should I continue going to other Drs to rule out other serious medical conditions? (I am currently waiting on Igenex Lyme and coinfection lab results). I've been getting progressively worse and am desperate for answers here. I do have history of Lyme diagnosed back in 2010 which disappeared after a month of doxy; I felt great. Similar but also dissimilar symptoms reemerged in 2012 but didn't feel like Lyme to me at all. Other standard MDs have done tests-- chest x ray, ekg, echo, other blood tests and havent found anything other than sometimes slightly elevated WBC and SED. I just dont want to miss anything, I've just started another abx but am still awaiting the igenex results. Last western blot done (not igenex) showed only 2 non-specific bands so I'm skeptical. Just hoping for some answers or ideas here. Thanks.
Posted 8/14/2013 3:08 AM (GMT 0)
My llmd ran a battery of tests on me before diagnosing. He ordered all of the blood work and ruled everything out then diagnosed by symptoms and pos igm/igg bands. So yes absolutely get other conditions ruled out but don't rule out Lyme if you do get diagnosed with something else because Lyme mimics many other diseases.
Posted 8/15/2013 3:38 PM (GMT 0)
I really understand your worry. And I agree with the dead that you may miss something. I got tests and saw doctors for a year before finally learning I had TBDs. What helped me accept the reality is that I had a clear positive babesia test so I knew for sure I had tick borne disease. I diet have a super positive lyme test but I did have every sx. If I were you, I'd get a FISH test for babesia from igenix and a Pcr 3 days blood test from galaxy for bartonella. If you are looking to rule things out makes sense to me that you'd want to also be completely thorough about all the TBDs you could have acquired along with lyme in 2010--even if the lyme is gone now you could have the other diseases.
Posted 8/15/2013 4:45 PM (GMT 0)
Thanks, yes I have done the bloodwork on those igenex tests and am waiting for results, hadn't heard of the bartonella galaxy one though. In the meantime I can barely function and I need to go to school and work soon but am scared to do so. I just tried to do an errand and felt like death. While I am waiting on results my Dr. put me on Flagyl (alone) which is worrying me as I have read how awful it can be on these forums. I had tried other antibiotics in the recent past which didn't do anything. Just worried that Flagyl could be doing more harm than good right now, especially if I have a coinfection and no Lyme. My LLMD seems to be more focused on Lyme, coinfections, and hormonal imbalances and doesnt appear to even test for anything outside of those things. So I was worried going to pretty much a Lyme specialist could be missing the big picture, possibly doing a disservice to my health. But then going to standard MDs hasn't yielded a dignosis for anything else either..Its quite frustrating as I'm sure others can attest to. Its been too long and I want my life back!
Posted 8/15/2013 6:25 PM (GMT 0)
How long have you been in treatment for? I was scared to go on Flagyl too. I kept waiting for OMG - ther herx of all herxes and it never happened. For me it took a month to know that whatever I had it was infectious b/c the doxy was helping and then after that I went 1.5 months just on doxy before starting treatment and was getting more and more sick.

After starting with the LLMD - not much change and then about 6 weeks in I started feeling much much better. I thought it was in my head that I looked yellow but that same week that I noticed a difference I had so many people coming up to me at work and saying "Hey, you've got some color in your cheeks - you are looking better." (At that point they knew I was ill).

For me in general - I have a herx, mild usually for a day or two and then I'm fine. Its not like a lot of people on here. My dr said some people don't herx at all.

Posted 8/16/2013 6:45 PM (GMT 0)
My treatment has been all over the place, inconsistent. I was diagnosed with Lyme via ELISA (no western blot was conducted)and treated with doxy for 3-4 weeks in 2010. Felt like new again within days. Different feeling symptoms of fatigue and weakness came back in 2012 and considered lyme again. Unlike others my LLMD didnt run any other tests to rule out other conditions. I saw him one year ago and he gave me a regimen of prescription antibiotics based only off of a recent western blot that only showed non-specific bands 41 and 45. I did doxy and a friend's herbal antimicrobial reccommendation, then ceftin, then zithro none of which worked, nor did I experience herxing. I was doubtful that I had Lyme disease after this because of inconclusive test results, all these abx failing, and no other tests done by doctors to rule out other conditions.
I decided to tough it out w/o any medication, feeling no different for many months. The past few months have gotten much worse and I sought out a standard MD to run tests the LLMD didn't. Chest x ray, ekg, echo, other blood tests and havent found anything other than sometimes slightly elevated WBC and SED, which were totally normal as of 2 weeks ago as well. PFT was done and unusable. My symptoms are vague and overlap with many conditions and standard MDs dont know what to do other than reccommend you to 10 different specialists for each of your concerns when they are likely caused by one underlying condition.
So i went back to my LLMD, he put me back on his regimen, next anibiotic up was Flagyl which I started a few days ago. He did not give me instructions this time on how to take it (1/4 pill at a time) so I was taking way higher doses as the bottle said! NOT GOOD. I've been having negative reactions but I dont think its herxing. I know with flagyl its hard to tell herxing from side effects. I would have some more peace of mind if I felt like the meds ever worked even a little, or if my LLMD seemed to actually consider other conditions beside lyme and coinfections. He seems to just give everyone who walks in the same lyme treatment meds no matter what your symptoms or test results are. Meanwhile I've gotten consistently worse, have been pretty much housebound over the past several weeks, feel like a complete zombie and have major increase in heart rate, dizziness, blurred vision and general feeling like I'm going to die the few times I do leave to run quick errands. But need to start school again in a matter of days and won't have my igenex blood test results for at least a week.

I wonder if there are people out there who thought Lyme could be the culprit but discovered they had another illness (not coinfection) and what that illness is. Even if the blood tests come back with certain bands positive, those antibodies could flare up because of a weakened immune system from a separate condition entirely. I'm just frustrated with that possibility because if that was the case my LLMD would miss this. Having to go back and forth between a lyme specialist and a standard md is annoying, expensive, inconclusive, and their opinions dont agree.
Posted 8/16/2013 7:08 PM (GMT 0)
For me, the increased heart rate and dizziness were 100% herx related. It lasted for awhile with me. But that is just me and like you said, you do have to be aware and wary of the things you are putting into your body.

Another thought if you don't feel the medicine is working - none of the medicines you listed above are effective for babesia. Doxy mildly - but usually only in early cases.
Posted 8/16/2013 7:57 PM (GMT 0)
I just wanted to say I also had a positive babesia and only 1 band for lyme. After about 3 months of antibiotics I was retested with 2 additional bands.  Maybe more people will post that it wasn't a mistake and that could also be a reassurance. Oh I got very sick from the antibiotics that was another great sign.

Stick around there are lots of great people here!

 

Posted 8/16/2013 8:34 PM (GMT 0)
Thanks, will see what igenex says about babesia, etc and keep you guys posted. The next prescription after flagyl I'm supposed to try in my Drs standard regimen is for babesia anyway--clindamycin/quinine.
Posted 8/17/2013 3:43 AM (GMT 0)
NJ_to_MO, I have not tested positive for any infection (though LabCorp) even though I have 48 symptoms from Dr. Burrascano's list. In three weeks of being on anti-biotics, my eye blurriness has cleared ( I almost lost my right eyesight), my right foot heel pain has gone away (I was already limping and had bought a cane) and my chest pains have gone away (felt like I was having a heart attack and could not breathe).

My Cardiologist, Neurologist, Endocrinologist, Rheumatologist, Infectious Disease doctor, ENT doctor, Physiatrist, Optometrist, Ophthamologist, and three primary care doctors said that it was NOT Lyme. I was diagnosed with Fibromyalgia, Chronic fatigue, anxiety disorder, and stress disorder.

If it is not Lyme, then how is it that the antibiotics have cleared some symptoms and lessen the severity of other symptoms?

It is your life and you are the one living in pain. Do what is best for you and always get a second or twentieth opinion if necessary. It could save your life.
Posted 8/17/2013 3:54 AM (GMT 0)
So I re-read the original post and forgot to address a point: Lyme DOES cause other illnesses. For example-
I suffer from Hashimoto's and low testosterone. This is a real illness caused by the Lyme affecting my pituitary glands. Some people get treated with Testosterone and Armour, I am hoping that it resolves itself.

I suffer from bone and muscle pain due to low magnesium levels in my body- this is caused by the Lyme affecting my magnesium. Taking magnesium would clear these symptoms up (maybe).

I have chronic fatigue and have been diagnosed with low B12 and low vitamin D. Again- the Lyme affects these. Supplementing would alleviate the symptoms.

I have an irregular heartbeat- the Lyme has affected my heart and so I suffer from this.

Many symptoms clear up once the Lyme is brought under control. Others stay forever because he organs get damaged beyond repair and so even after the Lyme is "gone", you still have the secondary illness.

I hope this makes sense. It's the best that my Lyme infected mind can muster right now.
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