Lyme Disease Anyone?

[Terri]

I did try to to a search on this but it pulled up just about every post ever listed.

I was tested last week for Lyme and it came back positive. :victory: Anyone else out there who has or had Lyme?

Could this be the cause of all my pain, fatigue and flu like flares?

If you had Lyme, what treatments worked for you and did your CFS also get better?

How long did it take to get better?

I am reading that the ALDF does not recommend aggressive long term ABX but everywhere else I am seeing that this is what most people who have gotten better are doing.

Were you able to get treatments from a non LLMD? Does anyone know of a good one in the Cincinnati or Ohio area?

Any info or thoughts would be appreciated.

I am of course looking at other Lyme sites and forums but since this is the best forum I have found I wanted to check here too.

Thanks!

 

[Esther12]

Hi there.

I'd be cautious with Lyme disease. It seems that the testing for it is not great, and you can get false positives as well as false negatives. The evidence available for different treatments is also rather limited. Hopefully yours will be an easily resolved case though! Sorry not to be more help.

 

[JT1024]

I did try to to a search on this but it pulled up just about every post ever listed.

I was tested last week for Lyme and it came back positive. :victory: Anyone else out there who has or had Lyme?

Could this be the cause of all my pain, fatigue and flu like flares?

If you had Lyme, what treatments worked for you and did your CFS also get better?

How long did it take to get better?

I am reading that the ALDF does not recommend aggressive long term ABX but everywhere else I am seeing that this is what most people who have gotten better are doing.

Were you able to get treatments from a non LLMD? Does anyone know of a good one in the Cincinnati or Ohio area?

Any info or thoughts would be appreciated.

I am of course looking at other Lyme sites and forums but since this is the best forum I have found I wanted to check here too.

Thanks!

The following links may be helpful but may also give you more information than you really wanted to know! Lyme disease, more specifically Chronic Lyme disease, is very controversial. Many doctors don't want to acknowledge that a chronic form exists...much like ME/CFS/FM.

The first link is written by a veterinarian who has Lyme Disease himself. He references the Marshall Protocol which is the second link. The third link is to the Prohealth website where a well know Lyme specialist from Massachusetts describes how Lyme is often misdiagnosed as FM or CFS. The last link is a the reporting of the Connecticut legislature's approval of a bill allowing physicians to prescribe long term antibiotics without reprisal.

http://autoimmunityresearch.org/lyme-disease/

http://www.marshallprotocol.com/forum2/

http://www.prohealth.com/library/showarticle.cfm?id=3579&t=CFIDS_FM

http://www.ilads.org/news/lyme_news/52.html

Hope this helps! ~ JT

 

[kurt]

That brings back memories... I had a Lyme diagnosis, from a test years ago, but treating Lyme did little for my CFS. I had a year of antibiotics, then several years of various alt medicine treatments including some pretty strong herbs. Even tried the controversial salt/c protocol, which I do NOT recommend at full suggested doses for someone with CFS due to our weak bloodflow in the kidneys and poor detox. But at a half dose or less it helped me for a few years.

At first I was hopeful, even convinced myself that I really had Lyme and not CFS. Eventually I realized that the most effective Lyme treatment I had tried, salt/c, was probably treating my Orthostatic Intolerance, helping with blood volume, like Cheney's gookinaid. Anyway, I did get the proverbial 'dieoff herx' from some of the Lyme treatments, but that never led to any significant improvements. So eventually I concluded that for me personally, Lyme must be just one of many co-infections due to the immune dysfunction in CFS.

But each person is different, who knows, some CFS patients have really been helped by Lyme therapies. My guess is that if you have the fatigue and neurological symtpoms but not the full set of other CFS symptoms (no post-exertional malaise, can exercise, etc.) and remember a tick bite, bulls-eye rash, etc, and that started your symptoms, then treating Lyme may help. But I would be very careful and go slow with any new therapies.

 

[Jenny]

My experience is similar to Kurt's. I also had a Lyme diagnosis a few years ago and had nearly 3 years of various combos of abx, including IV. I'm no better.

Lyme patients, even those with chronic Lyme, do seem to have rather different symptoms from the classic ME ones. Many are able to exercise, but have more joint pain and more often have swollen joints.

Jenny

 

[Navid]

lyme too

what kurt and jenny said, me too.

check out lymenet.com

good luck

 

[Carrigon]

I'm like the others on here. I was bit by ticks as a child. Not treated at that time because no one knew what it was. By the time I got the Lyme diagnosis, I was fully disabled by this disease. Tried a grocery list of antibiotics, nothing fixed it. I'm pretty much convinced it's just a coinfection and it's not what ultimately has me this disabled, but I'm sure it contributes to it.

 

[richvank]

Is Lyme disease linked to CFS?

Hi, Terri.

As others here have pointed out, Lyme disease and CFS are two discrete disorders, and some people have only one of them. However, I have suggested (poster paper presented at the 2009 IACFS/ME conference, posted at http://www.cfsresearch.org under M.E./CFS and my name) that in some cases these two can be linked.

The key thing is that Borrelia burgdorferi, the bacteria responsible for Lyme disease, has been found to lower glutathione in its host. According to the GD--MCB hypothesis (also described in papers at the above site), a person who has inherited the appropriate genomics, when their glutathione is lowered sufficiently, is plunged into a partial block of their methylation cycle. This then forms a vicious circle with the glutathione depletion, and the person now has CFS, together with their initial case of Lyme disease. This vicious circle is what maintains CFS as a chronic disorder, while the ongoing presence of the Borrelia makes the Lyme disease chronic as well.

If this is true, then I believe that treatment for both the Lyme disease and the CFS will be necessary.
Some of the LLMDs have responded to my suggestion, and are now routinely giving their Lyme disease patients the Vitamin Diagnostics methylation pathways panel. If they find a partial methylation cycle block, they are treating it, along with the Lyme disease treatment. They tell me that this is an important component of their overall protocol now. Three physicians mentioned the methylation cycle issue in their respective chapters in Connie Strasheim's book "Insights into Lyme Disease Treatment," which came out last year.

So I would say that it's important to test for both Lyme disease and for CFS in cases in which both could be present, based on the history and symptoms. I suggest that the methylation pathways panel should become the definitive test for CFS. I realize that this is a strong statement, but I think that we have the data to back it up now. Please see the treatment study at the above site.

Rich

 

[Min]

I have Lyme disease & co-infections diagnosed from live blood microscopy which I am self treating with herbs. The health authorities here in the UK do not recognise that chronic Lyme exists.

 

[mezombie]

Hi Terri,

I received a diagnosis of FM in 1990, of CFIDS in 1991 and of Lyme a year and a half ago.

I have been seeing an LLMD and only one med, Azithromycin, has helped at all. Several I've had to discontinue due to side effects and many did nothing. I am on the last treatment that my doctor can offer me and so far it is not doing a thing.

Many of us have a lot of infections that seem to reactivate due to ME/CFS. I have HHV6 and EBV along with Borreliosis.


My doctor insists Lyme is the cause of all my symptoms; that other infections are simply reactivating because of the Lyme.

However, I had 6 weeks of improvement of my cognitive symptoms on an antiviral, and absolutely none on any of the Lyme treatments I've been on.


The tests for the Lyme (borreliosis) and other infections carried by ticks are notoriously unreliable so the diagnosis is really a clinical one, based on your signs and symptoms. These overlap with many other diseases, including ME/CFS.

I felt it was worth a try so went to an LLMD for testing (via Igenex) and treatment. I had been tested, BTW, several times over the years at other labs and was always negative.

Lymenet is really the best source for doctor referrals, information, etc. Here is the link to their forum:

http://flash.lymenet.org/scripts/ultimatebb.cgi

There was also a discussion on XMRV and Lyme on this board. It got a bit heated, so if you read it, read it with a grain of salt. http://www.forums.aboutmecfs.org/showthread.php?668-Lyme-Disease-and-XMRV

Judy Mikovits, who found the retrovirus XMRV in ME/CFS, recently spoke about XMRV and mentioned Lyme as one of the infections that could start acting up in XMRV-positive patients. Someone transcribed her talk on this website.

 

[Terri]

Lyme Repsonses

Thanks to everyone for their response. Overall, most of what I am reading is not extremely hopeful, but I think I am going to try to be as positive as I can. I think it likely that I also have CFS but the Lyme symptoms do cover my symptoms, except that I do get PEM, although I only started up with that about 5 years ago. As I research the Lyme, it is clear to me that PWLD suffer with many of same challenges as PWC's. Actually kind of discouraging to find you have a positive test for something and then discover that there is just as much controversy and theories as with CFS and finding doctors and appropriate treatment is just as difficult.

Mezombie I read most of the forum link on Lyme and XMRV you provided. It was heated but covered a lot of good points. I have also signed up at lymenet. I know I have EBV but have not yet tested for HHV-6 or many other things.

Kurt : I think I agree with you that Lyme may be just another co-infection made worse from the immune dysfunction with CFS.

Rich: Getting the MPP test is high on my list, the problem is, as always, finding a doctor to work with me, not just on this but on all levels. I just seem to keep going to one doctor after another whose staff say their doc is what I need only to find out they are not. This out of pocket expense is getting old. I know many people travel long distances to find the right doctor but as I can barely get out of bed most days I find this concept hard to do. I know, I'm whining.

 

[aiden424]

I was positive for Lyme and Bartonella. I treated for years with antibiotics, but only got about 15% better. I also had a hard time tolerating the treatment, so maybe I would have gotten better had I been able to take the high dose antibiotics. I have also been diagnosed with CFS, EBV, HHV6a. I was recently tested for XMRV. Maybe it's the combination of everything making me so sick??

 

[Terri]

I was positive for Lyme and Bartonella. I treated for years with antibiotics, but only got about 15% better. I also had a hard time tolerating the treatment, so maybe I would have gotten better had I been able to take the high dose antibiotics. I have also been diagnosed with CFS, EBV, HHV6a. I was recently tested for XMRV. Maybe it's the combination of everything making me so sick??

What type of antibiotics did you take? How does high dose difer from what you were atking? Do mean a conbination of different types or just higher doses per day? When will you get the results from your XMRV test? Certainly if you have all those co exsisting conditions this would make you sicker.

 

[aiden424]

I took lower doses of antibiotics and didn't combine any. I was tested for XMRX two weeks a go. I'm on Doxycycline 400mg right now. It's the highest I've ever taken and it took me over a year to get there.

 

[SunnyGal]

Lyme activates XMRV

I tested positive for Lyme, Babesia and Bartonella. I was bit by a tick when I was 9 but I had some symptoms over the years (always worse when I was stressed) but didn't I get full-blown sick until my first pregnancy at 34. Fatigue has been my biggest issue with the Lyme symptoms of serious cognitive issues and joint pain not coming until the past couple of years. I started seeing my LLMD when my CFS doc, who treats for all other co-infections, wouldn't treat me for Lyme (wouldn't touch that political mess with a 200 foot pole).

I've been on a couple of oral antibiotics for 1.5 years and my Lyme specific symptoms have largely cleared up. But, I still have serious fatigue issues along with other issues. I saw my LLMD last week and he strongly feels that XMRV (and all the viruses it's helped activate) is what's keeping me from getting better at this point. It appears that I've had XMRV from birth or very young and that various XMRV triggers over the years finally caused full-blown XAND (AKA: CFS+Lyme+FM+CEBV+etc).

Lyme toxins cause the body to create NF-kB which activates XMRV (mold toxins also do this). So, if someone has latent XMRV and gets Lyme disease it can trigger XMRV leading to all of the mess of this illness. I suspect that people who are bit by a tick and get Lyme and then are cured by oral antibiotics and don't relapse don't have XMRV hiding in their bodies.

Because of this, if you do have XMRV and Lyme, it seems it would be important to treat the Lyme specifically, otherwise you could continually be activating XMRV.

Sunny

 

[Timaca]

Terri~
I was first diagnosed with Lyme disease, then HHV-6, EBV, Cpn and coxsackie. Much of my story is on the HHV-6 patient's forum at www.hhv-6foundation.org if you care to read it. I'm Timaca there too. It wise to get tested for lots of pathogens and then try to treat what is most obviously wrong. I am much improved, although not yet well.

Best, Timaca

 

[alice1]

I'm seeing an LLMD in a few weeks so thankyou for all this info.

 

[klutzo]

Hello alice1,

I was dx'd with MS in 1981 (wrongly), then FMS in 1986, and finally Lyme in 2004. I was allergic to all of the ABX that work on Lyme, so only could do herbal protocols (Zhang, Buhner, Cowden). I am not any better, though Cowden worked the best for me and held the line for awhile.

I fit the dx criteria for ME/CFS but have not been officially dx'd. However, I now have severe exocrine pancreatic failure, and since pancreatic failure is listed as the #3 cause of death in CFS patients (see 25 yr. study by Dr. Byron Hyde), and is not even on the lists for causes of death in FMS or Lyme at all, I'd say it's pretty much a sure thing that I have ME/CFS.

Like many who finally got dx'd with Lyme, I spent all my time at LymeNet for years, thinking ME/CFS and FMS were just the results of the effects of Lyme on the immune system. In the past year I've changed around to thinking that ME/CFS is probably the big Kahuna, which makes us weak enough for FMS and Lyme to take hold, not to mention the reactivation of EBV, CMV, Coxsackie, HHV6a, etc. I had changed my mind before XMRV was even mentioned, just on the basis of logic in what I'd experienced and seen happen with other people.

I have also strongly come to believe, due to recent govt. revelations, and previous revelations in the book Osler's Web, that CFS is a man made illness. Therefore, I don't think we should expect anything but interference from the govt. Private concerns like the WPI are our only hope, IMO.

I don't want you to lose hope. I do have a friend who is dying of Lyme because she could not stop smoking, and all of the LLMD's I've read about say there is no way an active smoker can overcome this illness, no matter how many ABX they take. It is so sad. I have another friend who has spent a fortune on ABX with an LLMD and has had no improvement. BUT I also have a friend whose younger brother hit upon the right combo of ABX for his strain of Lyme and is now working full time again and even running in marathons!!! However, if he misses his ABX for as little as 3 days in a row, he cannot go to work. Still, this is a worthwhile price to pay to have a life. I think many times the success stories do not come back to the forums to give us hope. I wish they would do that more often, so the news doesn't seem so one-sided.

Bless you in your search for wellness,
klutzo

 

[dannybex]

Actor Ben Stiller may have Lyme...

I just stumbled across this by accident. It's full of misinformation (about how "easily" lyme is treated) but if Stiller did get it almost a year ago (when his son was diagnosed) then he may have a more difficult time treating it. "May" being the operative word.

He did fall and hurt his knee in a muddy ditch more recently in Mozambique -- which may have become infected -- which then could've overstressed his immune system -- and led to his current "mysterious" health problems.

Anyway...here's the article:

http://www.chron.com/disp/story.mpl/gardening/6927969.html

(p.s. I agree with the other posters here. Lyme diagnoses can be very problematic, and if lyme becomes chronic, then there are probably other factors overwhelming the immune system, or causing it's dysfunction. I do know a woman who recovered, but she also had other issues, including a severe gluten intolerance/intestinal permeability that stressed her immune system...clearing that up helped enormously...then she started treating the lyme with herbs and rife.)

 

[klutzo]

The actor I feel really badly about is Michael J. Fox. He was treated for Lyme with the usual couple of weeks of low dose doxy and told he was cured. Then a couple years later he develops Parkinson's, one of the six diseases that Lyme imitates most often.

It probably took that long for the 15% of spirochetes that mutated to survive the inadequate doxy tx to grow stronger and overcome the strong immunity of such a young person and bring on Parkinson's. The fact that several others on that movie shoot also got sick is very sad too.

I am sure many people have told him about this possibility, but he has apparently decided to believe his conventional doctors, and may pay a huge price. Why not try treating it as if it were advanced Lyme and see if he responds? At this point, what does he have to lose?

We do have Amy Tan, the author, speaking out quite actively for us chronic Lymies, as she has suffered a lot. What we need is a really big star, with a definite case of late-stage chronic Lyme, though I hate to wish that on anybody.

klutzo