Lyme community says we all have it

[fibrodude84]

Many in the lyme community insist everyone with ME/CFS, fibromyalgia and the like all likely have lyme and don't know it.

Many of the symptoms do overlap and many with lyme went undiagnosed or had previous diagnosis like ours.

Now I'm panicked that what if it is lyme. I had the blood test come back negative but so do many who have lyme. I just want to be confident in knowing what's wrong with me so I can begin a game plan and that's different if it's lyme, fibro or ME.

 

[optimist]

Over some twenty years ago I was bitten by a tick and got a big nice red belt around the spot where it sat. I was put on penicillin for some time. These days I have a handful of theories what is the underlying cause of my situation, and lyme is part of the speculation.

My doctor says the only thing he can do for me is take a blood sample that will say if I ever had (and still have) lyme. Which, of course will not be of much help to me. What do you people in here suggest be the best way to further investigate the possibility of having an active Borelia bacteria in my system?

 

[brenda]

One quick way is to take a course of doxyciline and see if you herx.

 

[Valentijn]

My doctor says the only thing he can do for me is take a blood sample that will say if I ever had (and still have) lyme. Which, of course will not be of much help to me. What do you people in here suggest be the best way to further investigate the possibility of having an active Borelia bacteria in my system?

The test from Elispot-LTT from infectolab is supposed to reflect current levels of infection, not just past infection. It reportedly goes down after treatment, so should be a good indication of whether you have an active infection versus just a past one.

 

[Valentijn]

Now I'm panicked that what if it is lyme. I had the blood test come back negative but so do many who have lyme. I just want to be confident in knowing what's wrong with me so I can begin a game plan and that's different if it's lyme, fibro or ME.

The Elispot-LTT is supposed to be a lot better than the traditional tests that tend to have a lot of false negatives. If that one came up negative, you could be pretty damned certain that you don't have Lyme

 

[Valentijn]

One quick way is to take a course of doxyciline and see if you herx.

This can cause the bacteria to become resistant if only done for a short/normal course if there is Lyme, and could be needlessly damaging to healthy gut flora if negative. Better to get a solid diagnosis (or not) and treat appropriately.

 

[Hanna]

I would do a LTT test if I could send my blood within 24 hours. (I am positive by serology, but there is a false negative in more than 46%).

 

[brenda]

This can cause the bacteria to become resistant if only done for a short/normal course if there is Lyme, and could be needlessly damaging to healthy gut flora if negative. Better to get a solid diagnosis (or not) and treat appropriately.

Obviously one would stay on antibx if herxing. I would rather do that in the early stages than hang around waiting for a test. The gut should be able to recover from one weeks course.

 

[fibrodude84]

Can any doctor do the less regular lyme tests? I had one by rheumy but assume it was the standard. I'll ask if he can run them all again.

 

[Min]

My stsndard Lyme test came back negative too, but darkfield microscopy showed Lyme and co-infections. I cannot access any treatment in the UK, but have accessed plenty of contempt from the medical profession.

 

[justy]

The Elispot-LTT is supposed to be a lot better than the traditional tests that tend to have a lot of false negatives. If that one came up negative, you could be pretty damned certain that you don't have Lyme

Or on the other hand... according to my (our) Dr I may still have Lyme even though my LTT and other tests were negative for Lyme and my CD57 Is only low normal. We are going to re test at some point.

 

[fibrodude84]

I just checked my labs from last year and it checked lyme ab serum, I had iGm and iGg done. Is there anything else I should request rechecked?

 

[Daffodil]

I just checked my labs from last year and it checked lyme ab serum, I had iGm and iGg done. Is there anything else I should request rechecked?

if you are in USA, call igenex, ask for a test kit to be mailed to you. then go to doctor and request an LTT-ELISPOT for Borrelia.

any doctor can take your blood. igenex will tell you if the sample needs to be centrifuged and/or separated before mailing, and which vial to use.

 

[taniaaust1]

This can cause the bacteria to become resistant if only done for a short/normal course if there is Lyme, and could be needlessly damaging to healthy gut flora if negative. Better to get a solid diagnosis (or not) and treat appropriately.

I'll add to the negatives of doing that. You also could have something else other then lyme which caused the herx.

 

[taniaaust1]

The gut should be able to recover from one weeks course.

Guts in healthy people take up to ONE YEAR for peoples healthy bacteria to estabilish back to where it was. (I studied at an gov accrediated Naturopathy collage and that is what we were taught). People who already have gut flora issues, Ive no idea for how long one of us it would be.

Even if you supplement healthy bacterias with good probotics afterwards, one still may not have the same degree of healthy varieties. It takes a long time for ones system to recover to original level.

 

[brenda]

Some people use Samento, a herbal remedy for the same reason as a trial of antibx if they do not intend to use the antibx to treat the Lyme. I would not touch antibx myself, but people here seem to generally use them for other reasons than Lyme. Obviously if you have gut problems you won't be using antibx anyway to treat the Lyme.

 

[alex3619]

There are alternative views of course. Based on the same evidence someone might say that most of these diagnosed with Lyme do not have it, they used to and its gone, and they are dealing with post-Lyme disease. Just as those with enterovirus can have post-enteroviral disease, including post-polio which is an enterovirus. Similar arguments exist for Q fever and SARS, and there are probably more.

Then there is the possibility that many post-infectious syndromes are really some kind of autoinflammatory disorder, such as limbic encephalitis under the microglial theory. Or that the pathogens no longer matter except that lingering pathogens that cannot get cleared keep activating the immune system, and this activated immune system is the real problem.

While there are good arguments for Lyme as a trigger or for persistant triggering, its less strong for long term causation. Similar arguments apply to herpes and enteroviral infections, plus Q fever.

I prefer to say we just don't know yet. We all need better science. We should all be fighting for better science into all of these infections and their consequences.

 

[JAH]

if you are in USA, call igenex, ask for a test kit to be mailed to you. then go to doctor and request an LTT-ELISPOT for Borrelia.

any doctor can take your blood. igenex will tell you if the sample needs to be centrifuged and/or separated before mailing, and which vial to use.

Is the igenex test the same as infectolab's? Any point in getting a test done at infectolab if you have a negative (or a positive) from igenex?

Thanks

 

[Valentijn]

While there are good arguments for Lyme as a trigger or for persistent triggering, its less strong for long term causation. Similar arguments apply to herpes and enteroviral infections, plus Q fever.

Maybe so, but an IV antibiotic which is often used for Lyme and gets into the CNS was very helpful for me. I had a textbook Hermxheimer reaction, which should only happen in response to very specific types of bacteria - only spirochetes which produce toxins as they die off.

My personal experience strongly suggests a long-term Lyme infection, and it is this far strongly suggesting that 6 weeks of IV antibiotics has a big impact on Lyme and ME symptoms. For the past 5 days I have been incredibly active by my usual standards. I got a little sore the first couple days, but nothing resembling a crash, and now I'm able to do many household chores every day, without struggling at all - chores I haven't been able to safely do for a couple years.

And I feel vigorous and rested every morning. I get a little tired after most things that I do, but then within a few minutes of sitting down I'm recovered and trying to think of what else needs doing Everything is EASY now, though at the moment I'm still progressing cautiously.

Unlike ME/CFS, I had at least heard of Lyme before coming down with ME/CFS symptoms. And I assumed it was one of those usually not-real things which slightly unstable women believe that they have when they don't have anything better to do - maybe because I was such a hardcore Simpsons fan as a kid, and it was clearly portrayed as psychosomatic there:

Miss Hoover: So, you see, children, my Lyme disease turned out to be...
[writes it on the board]
Miss Hoover: Psychosomatic.
Ralph: Does that mean you went crazy?
Janey: No, it means she was faking it.
Miss Hoover: No, actually, it was a little bit of both.

Yet treatment targeted specifically at Lyme produced a reaction in me which should only occur in response to Lyme or Syphilis. And two weeks after the first round of antibiotics is done, I feel freaking awesome. Which raises three possibilities: 1) I was delusional regarding my Herxheimer reaction and my current improvement, 2) the antibiotics had a positive impact due to treating something other than Lyme, or 3) treating a 20 year old infection with IV antibiotics targeting that infection has produced the expected reaction and improvement that should occur when killing off Lyme.

I'd prefer to think I'm not delusional - past experience has been pretty conclusive for me in that regard. While I have had shorter term improvements in the past for various reasons, I didn't imagine them or cling to them after they were actually gone. It also seems unlikely that I had Syphilis instead of Lyme, or that I had some other unknown spirochete-based illness - after all I had dozens of tick bites when I was 13 and 14, and that's when some of my more minor symptoms started.

Hence in my case, a long-term and variably active Borrelia infection seems like the simplest and most logical possibility. And many others seem to have a very similar experience.

 

[alex3619]

I do not doubt that treatment for Lyme helps in some cases. So does treatment for herpes viruses etc. So does Rituximab. Figuring out which goes with which is the trick, and also figuring out how to turn treatment into full cure is still proving elusive. Some make it to full cure, many get 90% of the way there, but we need all of us better.