Lyme and coinfections

Hi There, i just recently found this site, hopefully someone else has the same situation as myself. Just over a year ago i was diagnosed with Lupus and fybro...but have been getting progressivly worse despite being on meds...long story short, I am now seeing a lyme and immune disease specialist....have tested positive for anaplasma, mycoplasma, yersinia, EBV and candida....but negative for lyme on both the igenex and MDL lab reports. Even though on the igenex report I was positive on band 18 and 41... Along with a few other IND bands. The doc is treating me with two months of antifungal to address the candida then onto antibiotics, she recommends IV....i guess docs are too afraid to dx someone with lyme these days...but i was under the impression that if you have a coinfection as in the anaplasma, then you have lyme...or is lyme a specific bug and not a general term...any opinions out there?

Tracy

Oh wow....very similar. Well, here goes, chronic fatigue, Relentless brainfog, hard time getting words out, short tem memory is bad, cant concentrate on anything for too long, jaw and throat tightening, my neck is always crackly and just feels like something is wrong with my brain....lower back pain, mood swings, insomnia...and the list goes on. Thank goodness at least my rheumy has treated just about every symptom that i have come in with...but the neck and brain issues remain. If i stopped any of these meds I would be in a world of pain. Last year this time i was a super active pilot type and am reduced to going nowhere but doctors appts. Yes, i also had severe gas and bloating there for a while, the rheumy put me on dexilant a stronger stomach protector....now i dont think it was tue meds at all but either candida or these other bugs I have. So what did igenex say...that you were pos or negative for lyme? On mine the Igg was the pos 18 and the Igm was the pos 41....im not sure if that matters....but it wasnt enough for them to confirm. So how is your doc going to treat your mycoplasma? And did they say you have lyme?

T

Just an FYI PhysicalWreck, Erlichiosis is a co-infection for Lyme. So is Mycoplasma. The co-infections have the ability to turn your immune response off which means you may NEVER test positive for Lyme. You should go to the 'New to Lyme' thread at the top of the forum and look for the information regarding interpreting your test results. I had only one Lyme specific band come back positive, and tested negative for co-infections. But then had a blood smear done showing a HUGE amount of infection! I almost walked away from treatment as well before I saw that test. Also, if you dont treat for co-infections you'll never get rid of the Lyme, which is likely why you are still not well even after having spent all that money. You need to go to a doctor that understands this disease along with its co-infections. My two cents. I just hate to think of someone suffering longer than necessary.

APWreck...hope you finally got some sleep. I have to take a combination of things to help get me there and keep me there..I cant say for sure when my symptoms started but i can look back now and recall having some symptoms. Having said that, about three years ago i started getting worse and went to a few docs that ran a lot of tests but couldnt tell me what was wrong, it was depressing being told, You are fine. Then about two years ago I started formation flight training and with the constant stress and sun exposure the symptoms came on with a vengence, so that amped up my mission to find the right doc. Eventually went to a rheumy and he discovered the lupus.

No i dont have tingling but i have felt slight pressure on my brain that is always there...i used to have finger twitching but im on lyrica and some other meds that helps mask a lot of my symptoms...all but the crackly neck and brain stuff, my symptoms migraite sometimes hourly sometimes weekly....my feet really hurt especially in the morning and last week they would burn on the bottom. Also my ears sometimes will pop, then the sound gets muffled then the ringing starts. And noise...oh i cant tollerate noise at all and i startle very easily...how about you?

Ok so my doc has me on antifungals for two months then will start the antibiotics...she said because the candida will get worse if she goes right in on the antibiotics. I wish i could start sooner, but what can i do.

As for igenex I was pos on 58, 18 and 41 IND on 34 and 39. That still wasnt enough for my doc to say yes to lyme. I guess it is important to know if it is or not, because she says it takes a different antibiotic to go after borellia than the other bugs.

All I know is that I'm a big hot mess and my life sure is different than it was just a year ago.

Tracy

just wanted to show this to anyone that may doubt their wb results, and especially not to listen to any infectious disease idiot, and although they are following "guidelines", there is no reason they can't start thinking outside the box and doing some research, that's what makes a good doc , no matter what field they are in.

It will be so much cheaper in the end to just treat now, rather than later.

No one ever told me this and ironically when I was tested the first time back in 07 even years after I had symptoms it was by the llmd I am seeing now!! He didn't even treat me with this band, but there was even more unknowns about the test then, so I don't hold him totally responsible, although I will be switching docs soon.

t34flygirl- I know it's all hush hush about treating lyme because doctors have lost their licenses over treating lyme, I mean not decades ago, within the last 10 years, I know we should be thankful that they are treating us at all, but nothing is going to change in the medical community if no one knows that at least some doctors are treating chronic lyme, it's almost like you can't blame the docs who have no idea how to treat it. But I know it is frustrating.

Well good luck to you, I think my doc was gonna do the culture, it's the newest test they use isn't it? But I didn't need it because my wb blot was more than positive..lol.. lucky me.