Lyme Disease and XMRV

[myco]

Someone once said to me, "get bitter or get better". I chose the latter.

 

[gracenote]

"get bitter or get better"

Myco,

I think all of us on this board have "chosen" to get better and are willing and wanting to do whatever we can to make it so.

 

[myco]

That was not meant to offend. It was really the best piece of advice I was ever given. I spent many years combing message boards fearing whether I should do this or that. Finally I just put myself in the hands of a very experienced LLMD and learned to trust him.

 

[gracenote]

"get bitter or get better"

From Myco:

That was not meant to offend. It was really the best piece of advice I was ever given.

My apologies. I just may be a TINY bit sensitive. I'm happy it worked for you.

 

[rebecca1995]

treatment failure

myco wrote:

Typical meds would be Doxy, Minocin, Zithromax, Rifampin, Flagyl or Tinidazole, Amoxycillin, Mepron or Malarone. That would pretty much cover Lyme and all co-infections in different combinations.

The depressing thing is that I took every single one of those meds, plus many more prescribed by my LLMD, who is a great guy and one of the best LLMDs in the country. I really have nothing but good things to say about him. I was treated for Lyme and all co-infections due to positive test results. I took orals and IVs in every possible combination for a total of two years.

And yet, at the end of the treatment, I was much worse than when I started. Before I started, I could at least walk around the house and go for walks. At the end of treatment, I was and remain almost completely bedbound. I am unable to walk farther than the bathroom and still can't take a shower.

I also incurred a bunch of new symptoms: interstitial cystitis, antibiotic-resistant UTIs, and digestive problems that I never had before, though thankfully I didn't get C. diff, which the NY Times reported in April is fatal in 6% of cases.

My experience has been that Lyme patients will tell you you are "herxing" if you get worse. They say that if you get worse on treatment you haven't been treated long enough, or haven't taken the right antibiotics. But I never saw any evidence of "herxing".

Some people do get better. E.g, I know of two people who improved, though they weren't able to return to work. Along the way, both nearly died of sepsis from their PIC lines--they were in the ICU--and one of them got C. diff.

But there are many, many people dxed with Lyme who don't improve, or who get worse. We don't hear from them as much because there is pressure on the Lyme boards not to post negative experiences. Also, because it's already so difficult to get insurance companies to pay for antibiotics and because the mainstream doesn't recognize chronic Lyme, support groups don't want to hear from pts who weren't helped by antibiotics.

I'm not saying chronic Lyme isn't real, only that more research is needed to figure out how to treat patients who don't get better on long-term antibiotics.

 

[anne]

I have a friend with Lyme who keeps trying to convince me that we have chronic Lyme. I guess her doctor says all CFS is Lyme, and she's listened. I wonder if that's common.

My husband was given a diagnosis of Lyme from a CFS doctor who is also a LLMD, but this doctor has a very specific idea of what CFS is, and when my husband didn't fit into that, he gave him another diagnosis, and said he didn't have CFS at all. It didn't make sense to me at all--he seemed so clearly to have CFS, and the "bands" he showed up for on the Lyme test was for recent infection, but he'd been sick for a year. With a half hour on Google, I found that EBV can cause a false positive that looked like just what he had.

We got Lyme officially ruled out by other CFS doctors later. My husband has classic Tahoe-cohort CFS. The doctor apparently diagnoses Lyme quite a bit, and was all set to treat my husband with hardcore abx. It's hard when both diagnoses are more art than science, and I'm sure illnesses get mislabeled as one or the other all the time. I hate to think of sick people getting abx who don't need them, and antivirals who don't need them. And then there are people who legitimately have both.

With any luck, XMRV can sort some of this out.

 

[zoe.a.m.]

question for Anne

My husband was given a diagnosis of Lyme from a CFS doctor who is also a LLMD, but this doctor has a very specific idea of what CFS is, and when my husband didn't fit into that, he gave him another diagnosis, and said he didn't have CFS at all.

Hi Anne, can you say what about your husband's case seemed un-CFS-like to your former doctor? I have had some similar comments made to me but I have not turned up positive for Lyme. How did later doctors rule Lyme back out? Hope it's okay to ask!

 

[myco]

The numbers of Lyme patients who get well after long term antibiotics is much higher than those who don't. Boards like Lymenet are often confusing because many of those who get well just don't stick around anymore. Who would? That leaves the ones who haven't and the confused newcomers who are being offered all kinds of conflicting advice.

My advice is to see a top LLMD. The good ones will tell you the percentages. Waiting for XMRV to "sort this out" is going to be a LONG wait. Unless they have some miracle retrovirus drug down the pike everyone is looking at at least 10 yrs. I have a background in pharmaceutical development and there is NOTHING out there but HIV drugs to keep the symptoms at bay, and as I said before, that means a lifetime of these drugs that are very toxic, much more so than any antibiotic.

There are plenty of natural treatments for viruses like HHV-6, CMV, etc....but we are talking retrovirus here.

Be well all.

 

[zoe.a.m.]

Hi myco

How would one go about all of this if there truly isn't an LLMD anywhere near you? I grew up on the east coast and sometimes wish I were back there for the purposes of being chronically ill. I have never seen a CFS doc and never heard of one quite frankly who is closer than 10 hours from me. Double that at least for someone who knows something about lyme. I've seen a few doctors who said they treated these conditions, but found them to be no more knowledgeable than a general practitioner.

 

[Robin]

I was treated for Lyme and all co-infections due to positive test results. I took orals and IVs in every possible combination for a total of two years.

And yet, at the end of the treatment, I was much worse than when I started. Before I started, I could at least walk around the house and go for walks. At the end of treatment, I was and remain almost completely bedbound. I am unable to walk farther than the bathroom and still can't take a shower.

I also incurred a bunch of new symptoms: interstitial cystitis, antibiotic-resistant UTIs, and digestive problems that I never had before, though thankfully I didn't get C. diff, which the NY Times reported in April is fatal in 6% of cases.

Rebecca, I'm so sorry you had that experience and I hope you start feeling better soon. (I'm glad you didn't get C. Diff. either, it's a really horrible illness and is starting to become resistant to flagyl.)

 

[myco]

Zoe,

Just go to Lymenet. Once there go to Dr. requests forum and ask for one in your area. You should get a number of referrals within 24 hrs. There are quite a few LLMD's in WA.

 

[Sing]

Lyme is Not ME/CFS

myco wrote:


The depressing thing is that I took every single one of those meds, plus many more prescribed by my LLMD, who is a great guy and one of the best LLMDs in the country. I really have nothing but good things to say about him. I was treated for Lyme and all co-infections due to positive test results. I took orals and IVs in every possible combination for a total of two years.

And yet, at the end of the treatment, I was much worse than when I started. Before I started, I could at least walk around the house and go for walks. At the end of treatment, I was and remain almost completely bedbound. I am unable to walk farther than the bathroom and still can't take a shower.

I also incurred a bunch of new symptoms: interstitial cystitis, antibiotic-resistant UTIs, and digestive problems that I never had before, though thankfully I didn't get C. diff, which the NY Times reported in April is fatal in 6% of cases.

My experience has been that Lyme patients will tell you you are "herxing" if you get worse. They say that if you get worse on treatment you haven't been treated long enough, or haven't taken the right antibiotics. But I never saw any evidence of "herxing".

Some people do get better. E.g, I know of two people who improved, though they weren't able to return to work. Along the way, both nearly died of sepsis from their PIC lines--they were in the ICU--and one of them got C. diff.

But there are many, many people dxed with Lyme who don't improve, or who get worse. We don't hear from them as much because there is pressure on the Lyme boards not to post negative experiences. Also, because it's already so difficult to get insurance companies to pay for antibiotics and because the mainstream doesn't recognize chronic Lyme, support groups don't want to hear from pts who weren't helped by antibiotics.

I'm not saying chronic Lyme isn't real, only that more research is needed to figure out how to treat patients who don't get better on long-term antibiotics.

I also quote Cort: "Post infectious ME/CFS patients do not get better from antibiotics....I can think of a few cases where that's not true but I would bet its true in general - otherwise we'd be talking about it alot more (?) (Of course there's the De Meirleir abx regime - short stints of abx to get at the gut bugs plus all the gut factors- a different thing entirely?)

Now for my experience. I went to one of the top LLMDs in New England telling him that I believe I have ME/CFS but wanted to explore the possibility that I might also have Lyme. He said that in his experience almost all those who think they have ME/CFS have Lyme. His diagnostic and treatment work was very thorough and careful but was entirely skewed towards it being Lyme. The long term antibiotic treatment I had made me significantly worse; I experienced NO improvement of any kind. Given that he said that a negative or neutral test could still mean Lyme. That no improvement could still mean Lyme and that there is no limit as to how long a patient needs to be on the antibiotic regimen to improve, I decided that there was no scientific basis as well as no experiential basis on my part for continuing. I ended with him still believing he was right and I would be back when I got worse. I gradually improved back to the level I was before I started his aggressive treatment.

Like some of the other posters here, I would like to see the Lyme related postings continue but to have their own section. Lyme is not ME/CFS.

Thank you

Cecelia

 

[Sing]

Addendum

Maybe I should say that Lyme treatment is not effective for ME/CFS rather than Lyme is not ME/CFS since both of those diagnoses are currently primarily clinical ones. There are some differences in the symptom pictures and physical findings but no ironclad discriminations that I know of as yet (correct me if I am wrong). It is the treatments we are talking about here. Given the suffering, difficulty, time, expense, etc. of treatment, and what most of us have been through already, another blind alley or dead end is disheartening, to say the least.

Thanks,

Cecelia

 

[Navid]

CFIDs, Lyme, SICK!!!!!

Hi:

My experience is very similar. I saw 3 highly regarded LLMD's on the West Coast. Did 2+ years of IV and oral abx.....also took mepron. Tried every abx combo out there. I continued to get worse and worse. The feedback from the LLMD's and other Lyme patients...you have to get worse b/f you get better. Well, I just got worse and NEVER got better. Finally quit the abx treadmill.....and did homeopathy (some may consider this doing nothing ....I improved from near death to being able to do 1 to 2 small activities per day. I am still exhausted and in pain, but at least I don't feel like I'm going to die.

I think there are many ppl who are clearly helped immensely by abx treatments, but there are just as many of us who are harmed by them. And the belief that you must get worse before you can get better is dangerous and damaging....for both the body and the mind.

Just my own opinion.

Regards, Lisa

 

[anne]

Hi Anne, can you say what about your husband's case seemed un-CFS-like to your former doctor? I have had some similar comments made to me but I have not turned up positive for Lyme. How did later doctors rule Lyme back out? Hope it's okay to ask!

It's fine to ask, though I'm a little wary as if I said what seemed un-CFS-like, it would be obvious to a lot of people which doctor I'm talking about. Let me just say he's someone who thinks CFS is something very specific and does very specific damage, and if you don't have that damage, you don't have CFS. But I don't think any other doctor would think this.

I know Lyme is just killer to diagnose, and that blood tests don't necessarily show you have it. We've seen Dr. Peterson who is a master of differential diagnosis with CFS-like syndromes. He did a spinal tap to check for Lyme and redid all the blood tests and found nothing, save this one band that EBV can create. More importantly, my husband has just classic Tahoe cohort CFS--terrible RNaseL, terrible NK cells, crazy-high viral loads, terrible VO2Max. And his lab results were very similar to mine when I was ill, and there was nothing Lyme-y about me. And I simply did not trust the other doctor--if high EBV can cause a false positive, it would seem responsible to do further digging before you treat someone with these hardcore abx. I felt he was--unconsciously--manipulating patients' results to support his theories. Confirmation bias.

I don't know what the difference is for diagnosis--though I think the post-extertional malaise is really key to CFS. Both Lyme and CFS have low NK cells. I don't believe the RNAse-L findings show up in Lyme. But I don't know, really. I am, frankly, somewhat wary of LLMDs as I've heard of a number who do believe everything is Lyme. I'd want you to find one really good at differential diagnosis. Have you been able to see a good CFS doctor?

Please keep in mind I have no idea what I'm talking about either.

 

[myco]

You never do a spinal tap for Lyme. Borrelia just does not hang out in the Spinal Fluid. If you go to sites like Cpnhelp.org and read the success stories there you will see that it takes 2-3 yrs of antibiotics to get well. They are treating for Chlaymydia Pneumoniae over there, but there are just as many patients over there with Lyme and other co-infections. Many get well, some do not. There is really no rhyme or reason. However, as I said earlier, I was diagnosed by more than one top CFS Dr. with CFIDS, then subsequently treated for Lyme and am now well. There are many others out there like me, and many others who did not get well on antibiotics. I encourage all of you to watch UNDER OUR SKIN (google it). You will see CFS patients in that documentary who were misdiagnosed. I personally think the term "CFIDS" is a waste basket diagnosis. Yes, you have certain immune markers that show dysregulation, but we don't know why. That's a waste basket scenario in my mind. Many infections can do that, viral and bacterial. I hope XMRV is the answer some of you have been looking for.

 

[MEKoan]

First, I know nothing about chronic Lyme disease at all.

I was reading through this thread and I admit to some concern for people undertaking Lyme treatment.

One thing that occurred to me as a confounding factor is the sometimes positive effect doxycycline has on those with ME/CFS. I don't know if this is due to it clearing simmering bacterial infections (teeth, bladder, sinus...) which we are unable to fully rid ourselves of or if it's some kind of immune modulation but, whichever it is, many of us find the tetracyclines a helpful treatment. I have had good results.

My concern is that if someone who does not have Lyme - any diagnosis of exclusion is hard to make - experiences improvement on doxycycline, they may then conclude they have chronic Lyme while they actually have ME/CFS. (I'm not saying the reverse could not also be true -- I have no opinion about chronic Lyme disease.) Further treatment decisions, some with considerable risk, may be made based on this positive response to doxy which has even been reported in some people with auto-immune disease.

During my remission years, I traveled in some areas where new and frightening forms of malaria were endemic and I would not take, even for a short time, the antimalarials some take long term for Lyme. One of my traveling companions experienced a psychotic break on one of these drugs even though he does not suffer from any form of psychotic illness. Others working in the field I was in had a variety of serious side effects and stopped the antimalarials choosing, instead, to risk malaria.

I am very concerned about the attitude I sometimes see in the Lyme community about a worsening of symptoms. I simply do not understand how this can automatically be attributed to "herxing"...

I find the stories from people whose health has deteriorated very, very sobering and thank them for sharing the stories here.

I suppose when we must take so much responsibility for our own health we would do well to remember: first, do no harm. Call me a chicken, but too much that is irrevocable has happened to my body for me ever to forget that.

Peace out,
Koan

 

[anne]

I get pretty prickly when people call CFS a wastebasket diagnosis, when in fact it's actually a real disease. But we don't know enough, yet, to differentiate CFS from chronic lyme and probably other things too, and people get misdiagnosed as having one or the other all the time. And people have both, of course.

With any luck this will all be sorted out so no one goes on anything they don't need. In the meantime, I suppose it's just going to be like the Sharks and the Jets with CFIDS and Lyme people on message boards, except with a hell of a lot less dancing.

 

[MEKoan]

I suppose it's just going to be like the Sharks and the Jets with CFIDS and Lyme people on message boards, except with a hell of a lot less dancing.

 

[hvs]

I personally think the term "CFIDS" is a waste basket diagnosis.

Not really: it is diagnosed with a number of classic hallmarks, inc. second-day treadmill, nk cells, brain appearance, etc. etc. In fact, the leaders in the field have a very strong handle on exactly what it looks like and why. The only thing they were missing was a big bang that set this cascade of effects in motion.