Poll: As a person living with ME CFS , how did you test Borrelia Positive?

[Research 1st]

Poll Question: As a PWME CFS who is Borrelia positive , how did you test Borrelia Positive?


Hello everyone.

I would like to see if the forum response to the question above, has any link to the phenomena that Borrelia in CFS or ME sufferers tends to be seronegative in nature, (and thus evade the immune system), or in fact, it's no different and the detection of Borrelia in CFS or ME remains that of classical Lyme disease.(antibodies can still be produced years later and/or the two tier 'accepted' method of detection worked for you).

Thanks for taking the poll.

Please only take the poll if you have had a positive Borrelia test, of some sort.

 

[Martial]

I have chronic lyme disease but wouldn't consider my symptoms in the M.E. category, though they are still very disabling at times and there is definite overlap with a lot of the symptoms. That being said myself, and many other chronic lyme patients who would not fall exactly into the M.E. spectrum of illness still can have indeterminate, or seronegative results from labs even to the likes of IgeneX. It is much more efficient to test for the bacteria rather then the antibody. Since most people who have been sick for a while are depleted of antibodies while fighting the infection. I myself was indeterminate but had positive strain activity on crossbands specific to borrelia, that combined with my symptoms, and response to treatment lead to a clinical diagnosis by my doctor.

 

[heapsreal]

I have chronic lyme disease but wouldn't consider my symptoms in the M.E. category, though they are still immensely disabling at times and there is definite overlap with a lot of the symptoms. That being said myself, and many other chronic lyme patients who would not fall exactly into the M.E. spectrum of illness still can have indeterminate, or seronegative results from labs even to the likes of IgeneX. It is much more efficient to test for the bacteria rather then the antibody. Since most people who have been sick for a while are depleted of antibodies while fighting the infection. I myself was indeterminate but had positive strain activity on crossbands specific to borrelia, that combined with my symptoms, and response to treatment lead to a clinical diagnosis by my doctor.

U have any research showing fighting chronic infections can deplete antibodies ?

Sounds reasonable and might be why i initially was igg positive to ebv but now i test negative ? ? I guess its like immune exhaustion , which i think I have read about in hepatitis ? ?

 

[Martial]

U have any research showing fighting chronic infections can deplete antibodies ?

Sounds reasonable and might be why i initially was igg positive to ebv but now i test negative ? ? I guess its like immune exhaustion , which i think I have read about in hepatitis ? ?

Not that I can recall off my head, my doctor was the one who told me about it. He mentioned that the antibodies in something like Lyme disease can get overwhelmed fairly quickly at a certain point in later infection, thus it is harder to get a positive test result without being on some kind of treatment for a while. He mentioned his patients would often show negative or indeterminate previous to treatment, and then go on to show a positive result with intervention of antibiotics for at least three months or other means of treatment. I myself never re tested because it is an expensive test and I had enough of a cross strand response in the beginning that curiousity of re testing was not worth the expense.

 

[duncan]

I think it's exciting that we have someone who actually is culture-positive. That is such a rare feat outside of an EM rash or ACA, both skin manifestations

 

[justy]

I voted 'clinically diagnosed' my LTT Elispot was negative, but I have various immune markers as well as co infections (Bartonella and past exposure to Tularaemia) that make my Dr fairly certain I have Lyme. In the UK it would be almost impossible to contract Tularaemia other than by a tick bite.

 

[bertiedog]

I have completed the poll as I tested positive on 3 aspects of the LTT Test through Infectolab Labs last year. My symptoms are very similar to ME/CFS since 2000 but there are differences in that exercise like walking for no more than 25/30 minutes makes me feel better in myself even though I will be right out of energy (ATP). Therefore I don't feel ill after exercise unless I have a virus or infection and then I will feel like death.

I did do Dr Myhill's ATP Test and this showed low ATP and also that it was used up very quickly.

Pam

 

[Vitalic]

Borrelia LTT, negative on 2 stage, couple of positive/indeterminates on WB but negative by CDC criteria. Zero improvement from IV antibiotics + Flagyl/Tindamax + herbals so far, I don't trust the LTT any more but it's kind of obvious why that would be the case for me - but even before treatment I wasn't confident having only the LTT as a marker for Lyme (well aside from the belief of a doctor who pretty much thinks everyone has Lyme). I wish there were better tests. I am starting to feel that some people may just have ME triggered by Lyme and the remnants of it are picked up by LTT (even though it is supposed to indicate active infection).

 

[Hanna]

1. Borrelia ELISA positive IgM
2. Borrelia Western Blot negative, but I have some doubt about it, as the result never show any band result.
3. "Horowitz test " highly positive (100)
4. bite in 1976 with allergic reaction (no EM - Doc supposed it was a spider. ??? )

 

[xrunner]

I'm pretty certain I was never bitten by a tick ever. Had three tests at different labs.
One Elisa IgG pos, IgM neg showing past exposure to Bb.
Another Elisa with Both IgG and IgM positive plus a C6 antibody positive and Bartonella positive. The third one was a positive blood microscopy for some sort of borrelia organism and some sort of bartonella-like organism.
I was actually never entirely convinced I had Lyme until I started to improve during treatment but the third test gave me enough confidence to start treatment.
Recovering a good deal (but not entirely) with long-term Lyme treatment was an ex-post confirmation that Lyme was there somewhat.
However, since I'm not fully recovered, I'm still unsure whether Lyme can be a trigger for ME or viceversa, that is in those like me where there was an acute viral-like ME onset (rather than a tick bite).

 

[Research 1st]

I think it's exciting that we have someone who actually is culture-positive. That is such a rare feat outside of an EM rash or ACA, both skin manifestations

Yes it is exciting! I wonder if anyone on the forum has managed to use the 'Advanced- Lab' Borrelia culture test, which has limited availability unfortunately and of course is rejected as it isn't validated. Doesn't mean it doesn't work though.

On the topic of the potential of validated Borrelia culture testing, if we move away from commercial tests back into lab based scientific studies for a moment, there is an important, bizarre finding some PWME CFS may not be aware of that happened in the Lyme world.

Dr Eva Sapi et al, designed a Borrelia culture test and published their work. However, CDC claimed it didn't work and the positive detection of Borrelia in culture was was down to ''contamination'' (without physically testing the assay). Hmm, curious science there. Your test didn't work, as our theory says, it won't work. So it doesn't work.

Here is the Sapi et al, paper:

Improved culture conditions for the growth and detection of Borrelia from human serum.
http://europepmc.org/abstract/MED/23470960

After the assay method above was rejected by CDC, this it the reply of Alan MacDonald (pathologist).

No Evidence for Contamination of Borrelia Blood Cultures: a Review of Facts

http://jcm.asm.org/content/52/5/180...d66a7e148257defb1a119488&keytype2=tf_ipsecsha


There's a small clip of Alan MacDonald talking here, '"Borrelia -diverse Morphologies in culture and in Human Infections", in 2004. A DVD of the full talk is available from Norvect.

 

[duncan]

@Research 1st , you might be right -- that culture-positive may be through ALS! That would make sense.

At this point in the ALS controversy, I think the ball is in the hands of ALS; the company was trying to validate through two universities if I recall correctly. The CDC took its shot - if I am not mistaken, possibly fired by someone with a horse in the race, no less, which should not have been allowed.

There are other implications from the Sapi paper. I am a firm believer that garinii and afzelii also are in North America - something mainstream Lyme strongly disputes. The ALS testing study suggested not only did the two European species have a foothold in North America, but that they were prevalent. This also did not escape the criticism of the CDC. (Actually, not sure that Johnson was still with the CDC when she wrote her critique).

It naturally has always seemed odd to me and many other Lyme advocates to suggest that Bb sensu stricto traveled to Europe, but garinii and afzelli could not migrate to North America...That Borrelia disease movement was a one-way street. We know for a fact that i scapularis, like i ricinus, can host all three species of Bb sensu lato - so it's not any sort of limitation one can ascribe to the vector.

We have back stories within back stories; after all, it's Lyme.

 

[Antares in NYC]

I first tested WB CDC positive for Lyme in late 1998. Elisa was negative, but Western-Blot was positive IgG and IgM. This was over 18 months after the first onset, the original infection, which included the bullseye rash, it actually was very clear and prominent.

I was treated with Doxy and Plaquenil for a few months. The doctor repeated the WB after treatment and it came inconclusive, so he stopped the treatment, although I wasn't 100% recovered (I would say I recovered about 75%).

Had major crashes in the following years, and my health started to slowly decline.

While traveling in Europe in 2005 I had a medical problem and the hospital tested me for anything under the sun. The doctor asked me if I was aware that I was positive for borreliosis. It was a WB test.

My health declined considerably in the last few years (way below 50%). Last year I had a standard PCR test that came negative for Lyme, followed by an Igenex test that came out positive, and also CDC positive. Most of the IgG bands lit up like a Christmas tree, but the IgM bands were less conclusive. One of the specialists mentioned that this is an indication of active infection and my body's inability to fight it. Also positive for Bartonella with a standard Labcorp test (very high titres, actually).

Just like @xrunner and @Vitalic have stated, I have a similar opinion of the potential role of Lyme in ME/CFS. I'm of the opinion that there are many paths to ME/CFS --not just one pathogen-- and suspect that untreated borreliosis for so many years have caused severe damage to my immune and nervous systems, leading to the sorry state I find myself in.

I'm quite afraid of the thought that Lyme may have cause irreparable damage, and that after a certain point without treatment, it's ME/CFS, and Lyme treatments may no longer work.

Frankly, I don't know what to think anymore. I'm sick of being so sick for so long, and nothing seems to help.

 

[Daffodil]

@Antares in NYC ....i was sick 20 years before i started lyme treatment. VERY sick. and the lyme treatment is still helping me. probably i do have irreparable damage, but at least i can get better than i am now.

 

[Antares in NYC]

Thanks, @Daffodil. I guess I'm feeling a bit down lately, as nothing I try seems to make a dent on this thing. Having a really bad week.

 

[Daffodil]

@Antares in NYC ...i understand. but know there is real hope

 

[Martial]

Thanks, @Daffodil. I guess I'm feeling a bit down lately, as nothing I try seems to make a dent on this thing. Having a really bad week.

Hey man, sorry to hear about your rough week. I just wanted to let you know though. Lots of people with lyme disease have gotten 100% well, even after 20+ years of illness. I have spoken to several personally. Tommy Hilfiger's daughter also dealt with it for fourteen years and is well again now. Just want to put that perspective out there, because although Lyme disease can be disabling and hard to deal with, it definitely is still possible to get well even if it can be a complex process.

http://www.dailymail.co.uk/news/art...s-condition-taken-single-cell-body-brain.html

 

[Antares in NYC]

Hey man, sorry to hear about your rough week. I just wanted to let you know though. Lots of people with Lyme disease have gotten 100% well, even after 20+ years of illness. I have spoken to several personally. Tommy Hilfiger's daughter also dealt with it for fourteen years and is well again now. Just want to put that perspective out there, because although Lyme disease can be disabling and hard to deal with, it definitely is still possible to get well even if it can be a complex process.

@Martial @Daffodil : thanks for your encouraging words; I really appreciate it.
I had a horrendous last week, and it's easy to lose perspective when you are so deep down the rabbit hole. I too have talked to people that successfully recovered from severe Lyme after years of neglect. Actually, one of those people was a nurse that saw me at a hospital where one of my CFS doctors treats me. She went undiagnosed for over two years, got so ill that she had to go on short term disability, and took her about 18 months of treatment... but she recovered 100%. She's preparing to run the 2016 NYC marathon. Talk about giving us hope, man!

I want to post about my status in another thread, so I can explain the ordeal in more detail, but here's a quick brief:

I've recently seen a LLMD, one of the big names, and he put me on a very aggressive protocol. Miracle of miracles, my insurance approved the IV antibiotics. So I had a Hickman line implanted, directly into the superior vena cava into my heart. It is weird, but you get used to it within days. I have been on a combination of massive IV and oral abx for about 4 weeks, and last week I was feeling just horrible. I know it takes time, and it has been just 4 weeks, but the effects of the abx are awful, plus I had a massive herx reaction to one of the oral abx. I literally slept about 2-3 hours per night last week. Horrendous. I already dealt with sleep issues for years (Lyme and CFS), but this extreme sleep deprivation really messes with your head and puts you in a very negative and pessimistic mood.

We had to cut back on the dose, so this week I'm a bit better, but the insomnia is still there. I'm getting about 4-5 hours of sleep per night --not good but better than last week. The herx is not as intense since we reduced the dosages, but still feeling very out of it.

I just hope this whole thing is worth it, I swear...

 

[Martial]

@Martial @Daffodil : thanks for your encouraging words; I really appreciate it.
I had a horrendous last week, and it's easy to lose perspective when you are so deep down the rabbit hole. I too have talked to people that successfully recovered from severe Lyme after years of neglect. Actually, one of those people was a nurse that saw me at a hospital where one of my CFS doctors treats me. She went undiagnosed for over two years, got so ill that she had to go on short term disability, and took her about 18 months of treatment... but she recovered 100%. She's preparing to run the 2016 NYC marathon. Talk about giving us hope, man!

I want to post about my status in another thread, so I can explain the ordeal in more detail, but here's a quick brief:

I've recently seen a LLMD, one of the big names, and he put me on a very aggressive protocol. Miracle of miracles, my insurance approved the IV antibiotics. So I had a Hickman line implanted, directly into the superior vena cava into my heart. It is weird, but you get used to it within days. I have been on a combination of massive IV and oral abx for about 4 weeks, and last week I was feeling just horrible. I know it takes time, and it has been just 4 weeks, but the effects of the abx are awful, plus I had a massive herx reaction to one of the oral abx. I literally slept about 2-3 hours per night last week. Horrendous. I already dealt with sleep issues for years (Lyme and CFS), but this extreme sleep deprivation really messes with your head and puts you in a very negative and pessimistic mood.

We had to cut back on the dose, so this week I'm a bit better, but the insomnia is still there. I'm getting about 4-5 hours of sleep per night --not good but better than last week. The herx is not as intense since we reduced the dosages, but still feeling very out of it.

I just hope this whole thing is worth it, I swear...

Oof, the combo of abx herxing and the side effects of that, along with sleep deprivation sounds really sucky… Hope you feel better and rest more well soon man. Insomnia and sleep deprivation are one of my least favorite things to deal with. Five hours is at least not too bad though.

 

[duncan]

I hope you start seeing improvement soon, Antares in NYC.

Ironically, after years of trying to get approval for IV Rocephin, I recently got approved - but I cannot get it because my insurance requires that it be dispensed at a hospital, and the nearest hospital is 30 miles away. Much too far to drive one or two days, let alone 30 to 60 days everyday, each way.

Not that that bothers me. I know enough about oral combinations to hold the little buggers at bay.