posted
I'm going to be starting lyme treatments soon.
Couple of questions
- Fatigue and really post-external malaise are my main issues. Will I still have CFS after Lyme treatment?
- Is it really feasible after 7 years of illness to think that I can get back to seminormalcy of health? I mean 95%?
Posts: 111 | From madison wi | Registered: Nov 2008
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sparkle7
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CFS is something different than Lyme in my experience. It can be caused by a virus or other pathogen. It depends on whether your fatigue is being caused by Lyme spirochetes or something else.
Antibiotics aren't used to treat viruses. Treatment for these things is sort of like peeling an onion. You have to go through the layers...
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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TF
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I had undiagnosed lyme disease for 10 years. Once I got diagnosed (also had babesiosis and bartonella) and got good treatment, all of my symptoms went away.
That is spelled A-L-L.
It has now been over 5 years since I completed my lyme treatment and I am still symptom-free, enjoying my life. It is exactly the same life I had before lyme disease.
So, I say that you can get back to 100% normal health, but that requires seeing a doctor who knows how to get rid of lyme disease.
The doc is the key to getting rid of this disease. Can't stress that enough. The doc is the key.
Many doctors treat lyme disease, but not many know how to get rid of it for a person. I had to go through 2 other lyme docs (all recommended by Maryland lyme support groups) before I found the doc who knew enough to get rid of my diseases.
He followed the Burrascano lyme treatment guidelines. Docs who follow Burrascano have gotten me and ALL my friends well. We are all back to 100%. So, that's why I believe in the Burrascano protocol. It is the one I have seen work over and over again. I guess that's why it's followed by doctors all over the world.
So, I suggest you pick a doc who follows this protocol. People don't realize that there are many lyme treatment protocols. They can be totally different from each other. So, the main question to ask when calling for an appt with a lyme doc is, what protocol does the doctor follow?
If it is not Burrascano, I would not make the appt. However, you may want to read up on the protocol that the doc uses and then make your decision. Some doctors do their own thing, meaning that they don't really follow any protocol. It is good to know this in advance. If you are not comfortable with how the doc treats, no sense spending time with that doc.
So, if you want the Burrascano protocol, call lyme support groups and ask for the names of the docs who follow this protocol. It is tried and true.
It consists of 4 elements: high-dose combinations of antibiotics to treat lyme and all coinfections, supplements and some herbs (artemisinin for babesiosis), diet, and exercise beginning at some point in treatment (1 hour of weight-lifting every other day). The Burrascano type docs I send people to both say that the patient will not get well until they begin the Burrascano exercise program. It did an awful lot for me.
My main symptom for 10 years was extreme muscle weakness, so the weightlifting program was a real challenge for me. It was wonderful to see my progress as the months went by. Not only did I eventually work up to the 1 hour, but I began increasing the amount of weight I could lift. I did a full body workout every other day. By the end of my lyme treatment, I was in great shape.
I hear you about the post-exertional malaise. Burrascano discusses that specifically on page 31:
"Despite antibiotic treatments, patients will NOT return to normal unless they exercise, so therefore an aggressive rehab program is absolutely necessary. It is a fact that a properly executed exercise program can actually go beyond the antibiotics in helping to clear the symptoms and to maintain a remission.
Although the scientific basis for the benefits of exercise is not known, there are several reasonable theories. . .[read this part too. It is fascinating!]
The goal is to exercise intermittently, with exercise days separated by days of total rest, including an effort to have plenty of quality sleep. The trick is to time the exercise days to take advantage of these rebounds. For an example, begin with an exercise day followed by 3 to 5 rest days; as stamina improves, then fewer rest days will be needed in between workouts. However, because T-cell functions do fall for at least one day after aggressive exercises, be sure to never exercise two days in a row."
Wish you the best.
Posts: 9931 | From Maryland | Registered: Dec 2007
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-------------------- lisa theobald Posts: 111 | From madison wi | Registered: Nov 2008
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BoxerMom
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Post-Lyme Syndrome is the name the IDSA gives to those who still have symptoms after treating with antibiotics. It is at the cornerstone of the Lyme controversy.
The IDSA (Infectious Disease Society of America) states that if you still have symptoms after 4 weeks of antibiotic treatment, you have Post-Lyme Syndrome. You have no more active infection. You have inflammation, tissue damage, and/or autoimmunity causing your symptoms. Their clinical guidelines call for denying you further treatment and saying "good luck with that."
ILADS (International Lyme and Associated Diseases Society) says that if you still have symptoms after 4 weeks (or more) of antibiotic treatment, you still have active infection. They have demonstrated remaining infection time and time again. Their clinical guidelines call for treating until a patient is symptom-free.
There is no Post-Lyme Syndrome. Some people may have remaining symptoms after completing treatment, but nobody should have systemic CFS-like symptoms after adequate treatment.
Please watch the documentary Under Our Skin and read the book Cure Unknown, Inside the Lyme Epidemic for complete explanations of all the "Lyme controversies."
sparkle7
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posted
I'm sorry but I don't agree that the only way to become well is to follow the Burrascano guidelines.
There are other ways to get well. Fatigue is a symptom of many illnesses. If the fatigue is caused by Lyme, then treatment should help. If it is caused by something else, then you may have to try other things.
Many people here have gotten well by using other treatments than the Burrascano guidelines. There is hope. I don't see how anyone here can guarantee that you will be completely better if you follow X guidelines.
Each one of us is unique & no one here that I know of is a medical doctor. There are many ways to get better. I'm sure in time you will find something that will help you.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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massman
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In my training (as a LL doc that is NOT a MD) CFS is a stage of lyme. That means that effective lyme treatment should clean up CFS.
Dr. Burrascanos' protocol cannot apply to everyone. See the movie + read the book recommended above - very good continuing ed.
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posted
I'm not a believer in PLS or CFS. I believe people with CFS actually have Lyme. That's just my little ole opinion.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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sparkle7
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Not everyone with CFS has Lyme. It can be caused by a virus. Fatigue is a widespread symptom of many illnesses. Not are all tick related.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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-------------------- lisa theobald Posts: 111 | From madison wi | Registered: Nov 2008
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sutherngrl
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It is true that fatigue can be caused by things other than LD. A LLMD would have to look at your history and all your other symptoms combined to get a clinical diagnosis of LD.
For me fatigue was one of my worst symptoms but was acompanied by many others lyme symptoms. Therefore the diagnosis of LD fit my profile.
After 2 years of treatment I have started to feel better. I was ill for 2 years prior to lyme treatment.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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massman
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Chicken or egg ?
Bacteria or virus ?
Mickey or Donald ? _______________________________________________ DISCLAIMER: The post above is a goofy post, an attempt to make people here smile more.
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You will have to go thru some treatment and see how you feel. It's different for everyone depends on the damage done. I was diagnosed with CFS in 1999, my test for lyme(Elisa) was negative. I kept getting worse so started exploring other problems. I got diagnosed with hemochromotosis, sleep apnea, addison's disease, and isolated growth hormone deficiency. All those conditions cause fatigue. It took about 8 yrs to find all this and I was still in bad shape, then started having neuropathy. I found a LLMD about 3 yrs ago and have been treating Lyme, bart, and babs. Still fatigued. I think CFS is a garbage can diagnosis---that's what you get as a diagnosis when they can't figure it out. Lyme may not be your only problem. If the fatigue is debilitating ater a few months check out your endocrine system. I do hope you notice a difference right away....Good luck.
Posts: 383 | From Ar | Registered: May 2007
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There are two parts to CFS. Firstly, "CFS" was based off of a more specific disease called M.E. (myalgic encephalomyelitis). HOWEVER. The way CFS is diagnosed these days, all it has become is a misdiagnosis of other diseases. Mostly, the diagnosis is just handed out when your doctors can't find anything else...it's actually one of the criteria!! (And in fact the above poster even mentioned that part.) The M.E. "CFS" is the viral-onset, neuroimmune disease "CFS" that people actually get that ruins their lives because it's an actual disease and not a general syndrome...but that's not really CFS at all, now is it? Nope.
So I agree with the others: Don't worry about "CFS," because the CFS that is based on fatigue is most always a misdiagnosis, and the "real" CFS that is M.E. (because people use them interchangeably and that's why there is so much confusion here) has actually very little to do with fatigue being a primary symptom.
Post-exterional malaise is a major symptom of Babesia, by the way. The only thing people can really guarantee you is, if you work at treating these pathogens, you WILL improve, often to a very wonderful level.
And it's not true that anitbiotics don't work on viruses! Interestingly enough (and it shocked me, too), minocycline has been shown in recent research to alter the activation of viruses! Why? "Because minocycline targets cellular pathways," not just the pathogens themselves. Google it! It made me wonder how many people have been helped by mino because it helped treat underlying viral infection in addition to treating bacteria...
Posts: 161 | From Southern United States | Registered: Sep 2009
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posted
Well, I am praying that treating my lyme will help my CFS. I have been treating now for a year and a half, and no improvement to that symptom at all. Oral for a year, bicillin for 3 months, and now, IV.
And, fatigue is my worst symptom. I feel like I could push through the pain I have, if I wasn't so darned exhausted all the time.
I still feel like I am still missing part of my diagnosis and it is holding me back.
Posts: 893 | From Florida | Registered: Dec 2008
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I know I don't have babesia. I've been tested and only regular lyme and rocky mountain spotted fever came up.
I'm so scared of all the people who have been treated for so long with no change or a small change in fatigue. Why suffer through treatment if no change in fatigue?
-------------------- lisa theobald Posts: 111 | From madison wi | Registered: Nov 2008
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posted
I don't think that CFS and Lyme are the same disease. I think you can have both. You have to be careful to not assume everything is always just lyme. It may be lyme combined with several other viruses, bacteria, or parasites.
Kathy
-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
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posted
I really don't have anything identifiable viral, but I have something viral probably due to blood counts. I've been tested for 50 viruses, so I'm stuck there.
-------------------- lisa theobald Posts: 111 | From madison wi | Registered: Nov 2008
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quote:Originally posted by Elizabeth S.: [QB] ............
So I agree with the others: Don't worry about "CFS," because the CFS that is based on fatigue is most always a misdiagnosis,---------
Post-exertional malaise is a major symptom of Babesia, by the way.
Amen to both of those statements!!
My worst fatigue (extreme) was from babesia, so if you haven't explored that one, please do so!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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springshowers
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posted
I am one who has treated and feel LYME is remission but there is still Fatigue and POST Malaise and painI am working on that ABX do not and did not "GET RID OF" and I agree with SPARKLE that it is something that is PART OF THE LYme and CO INFECTIONS but mostly from CO INfections that are VIRAL> Those are HARD TO TREAT but doable. The more I work on those now the Post Malaise is Near GONE>> Amazing.!! It has been a Decade I have had to deal with that. SO it is DOABLE>
And then now the Fatigue too and pain are getting better all the time.
I do think when you his the LYME and MAIN co invections you can still have risidual things going on as well as Hormonal and then also just damage left over to heal.
I am in that stage of the game and it is MUCH Easier to treat once you get to the POST stage when the LOADS are way down of the other and main LYME infections...
So when you get there you will know it.
I think you have to go through a long process to get there though. When I was treating the LYME the Viral issues came on MUCH STronger as the LYme and Cos left.. Then it all calmed down and the Virals are still lingering way past the the others and as the immune system gets stronger the DOWN goes the Viral issues.
I can feel this happening so clearly in my body and I wish I could express it in words better but to answer your question.. Yes.
I am in that stage and it does happen and it is Treatable...
I also do Rife and am going to start and iMmune Modulater that is used for CFS>> I am studying more about what is used for CFS because of the fact they use things that are for Viruses and not necessaryily because of the NAME because for me its all one big Mixed POT of things and the names are not relevant.
So for this stage I think we should all read up and try to treat differently than we treat Lyme. A lot of LYME doctors do not seem to have a plan for this stage and they say to KEEP On the abx til symtpoms gone. Well that does not WORK If you have a viral issue and your taking abx. Because abx do not work on Viruses.
Just stuff to think about.. and some common sense..
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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posted
I actually have both M.E. and Lyme (and bartonella...along with a few other elevated things). Treating the infections with Doxycycline has improved my fatigue. And I was one sick bird. Listen to all the people who are saying IT IS POSSIBLE.
I really hope you figure out what's going on. And please remember that the tests we have for most parasites and bacteria, are very unreliable. Babesia and Bartonella are missed more than 50% of the time, based solely on tests: It's just like Lyme! I actually tested negative for bartonella, but I couldn't be a more classic bartonella case.
Lab tests alone are not enough. You treat based on symptom patterns.
And since you will be starting treatments, know that your problems are going to get worse before they improve.
But after that, you're going to be so happy to be feeling better for the first time in all these years, that all these "will I ever be back to normal" questions will probably leave your mind.
I may be too forward here, but if you have both Lyme and RMSF and fatigue is your main symptom, that's incredibly "fortunate" compared to all the things that could be wrong. Maybe try having a little more perspective on your situation? (But of course these illnesses affect our brain in the worst way, so that's always something to remember, when someone is having trouble taking in a lot of information. Bartonella makes me irrationally paranoid and depressed once a week.)
To all those who suffer from fatigue as their primary symptom, dozens upon dozens of things can create fatigue. You have to start looking for the CAUSE of it. Don't accept a "CFS" diagnosis just because your doctor can't find anything else. Be your own advocate or you'll never improve, it's as "simple" as that. Posts: 161 | From Southern United States | Registered: Sep 2009
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D Bergy
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Carry on with your Lyme treatment and see what becomes of the fatigue. It may clear up and it may not. It depends on the cause, and there can be more than one cause.
Later you will have more information as to the cause, or at least what is not likely to be the cause.
We learn as we go, and treatment changes with additional information.
Dan
Posts: 2919 | From Minnesota | Registered: Aug 2006
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I feel your pain -- literally. I, too, am dealing with CFIDS and Fibromyalgia and don't know if my main problem is the Bb bacteria.
There is an article online at the ER site that talks about many people with CFS/Gulf War Ilness testing positive for Lyme. Those that tested positive for Lyme usually also had one mycoplasma infection; those who tested negative to Lyme frequently had several mycoplasma infections. I tested positive for Lyme based on IGENEX criteria. I also have high titers to Mycoplasma pneumoniae, which was the only mycoplasma we tested for. The 2 viruses we tested for (HHV-6 and EBV) are both positive based on high titers, as well.
Some others on this forum have talked about high viral titers, but I don't know if they have CFIDS or not. Nor do I know if everyone who has Lyme also has high viral titers.
Massman, maybe it doesn't matter which came first, the immune dysfunction or the bacterial infection, but for Ictheobald (and myself and others dealing with CFIDS), it is an important question. If I am going to take massive amounts of antibiotics, I want some assurance that it is going to eliminate the CFIDS. If not, I might take only a small amount of abx to see how it works for the Lyme. Since abx doesn't work for CFIDS (allegedly), then why put my body through that? The cure might end up to be worse than the disease, ya know?
Posts: 277 | From Pennsylvania | Registered: Apr 2010
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I'm a pretty classic case of M.E./CFIDS, if you're talking about the actual disease. There's absolutely no question about it. Treating additional infections will DEFINITELY help me, and I've improved a lot (relatively) by doing so, but even if the Lyme were go away, I'm still going to have M.E. Those are just the cards I've been dealt.
But the thing about M.E. (or CFIDS, if you want to call it that) is that it makes you far more suceptible to infections that people usually don't have to worry about. And it makes getting RID of those infections, ten times harder.
I got Lyme a few years ago, but I got M.E. about a decade ago. Lyme is hard enough to get rid of as it is, and it also lowers your immune system and makes other things your body can usually keep in check (like latent viruses) flare up. Can you imagine how hard it must be to get rid of, when you are ALREADY suffering from severe disease that also disregulates the immune system? Honestly, I have no idea if the Lyme or Bartonella (or M. pneumoniae, which I also have) will ever go away, given my circumstances. But at least there are available treatments.
At least antibiotics help me, and a lot of my fatigue comes from these infections, not the M.E.
(When it comes to M.E., honestly, fatigue is the least of my worries.)
So yes, I can understand these dilemmas. It can take years of paying attention to your symptoms (and a LOT of knowledge about what you're dealing with) to figure out which illness is causing what. If I STOP the antibiotics and start to decline, then take them again and start to improve, I'll know that I still need them, for it's common sense (no matter what infection the antibiotics happen to be working on that's causing those fluctutations). Most of what I expect is to take these antibiotics and improve to a certain degree... But knowing that I already had illness before Lyme even came into the picture, helps me to realize that even after treatment there will still be things that I can't pin on "just Lyme" or "just bartonella" so I won't exhaust all my resource trying to treat something that isn't there.
To each his own, we really do have to be our own best advocate, only we know our bodies because we LIVE with them every day.
Posts: 161 | From Southern United States | Registered: Sep 2009
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posted
If I am going to take massive amounts of antibiotics, I want some assurance that it is going to eliminate the CFIDS. If not, I might take only a small amount of abx to see how it works for the Lyme. Since abx doesn't work for CFIDS (allegedly), then why put my body through that? The cure might end up to be worse than the disease, ya know? [/QB][/QUOTE]
I don't think antibiotics are going to help with CFIDS. I think it's more likely that it's caused by a virus, and antibiotics are for bacteria.
-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
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posted
I guess no one saw this up above so I'm posting it again:
And it's not true that anitbiotics don't work on viruses! Interestingly enough (and it shocked me, too), minocycline has been shown in recent research to alter the activation of viruses! Why? "Because minocycline targets cellular pathways," not just the pathogens themselves. Google it! It made me wonder how many people have been helped by mino because it helped treat underlying viral infection in addition to treating bacteria... Posts: 161 | From Southern United States | Registered: Sep 2009
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-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
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posted
I was diagnosed with CFS first...then 2 years later Lyme. I was treated for 30 months with various combos..IV..bicillin etc.
None of it ever relieved my fatigue which I still have to this day 6 years later. I believe I do not have CFS because I have none of the other issues associated with it. I was diagnosed with CFS only because I had unrelenting chronic fatigue which was and is still debilitating.
I have been off abx for a year and feel no worse and no better. I do what I can and rest the other time.
I had a sleep study done but it was a failure in that I slept less than two hours so I am hoping to do it again.
I know either the Lyme or "cfs" altered my sleep when I first became sick because before then I slept like a baby.
It is true about the fatigue and cfs. My doctor told me most of his patients with cfs complain about the other symptoms and usually fatigue is towards the end of the list...
still searching to improve the quality of my life.
Posts: 343 | From North Carolina | Registered: Oct 2008
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massman
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kim - there is a naturopathic doctor in MA just a bit south of the NH line. I did not keep his number but if you are interested we can find him.
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I'm going to take the next weeek and think if it's worth it try try to treat lyme. Read of too many people who have treated for a decade, no lyme left according to tests, but still have fatigue.
I can have a life with all the other symptoms, but fatigue leaves me no life. I don't know if it's worth it to try to treat lyme, suffer while treating, then end up with CFS that still continues to worsen.
-------------------- lisa theobald Posts: 111 | From madison wi | Registered: Nov 2008
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posted
massman-I was seeing a naturopathic doctor here in NH. He tried everything but nothing helped with the fatigue..I actually went to him because the fatigue was so debilitating and he ended up diagnosing me with Lyme. Thank you for the offer though.
I totally believe that not everyone who has cfs really has Lyme. I am fairly certain my illness started with some type viral attack (according to my blood work). I had blood testing the actual day I became ill. I don't even know how many virus's Dr. H tested me for but it was Alot.
I agree..the fatigue leaves me no life either.
Posts: 343 | From North Carolina | Registered: Oct 2008
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massman
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kim - there are specifically mixed herbals for viruses. I have used them extensively with patients and family.
Your ND could get them for you. -------------------------------------------- oooops - almost forgot my DISCLAIMER: I get no compensation in ANY way shape or form for recommending the companies and supplements listed above. Or anything else.
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sparkle7
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I had CFS when I was in my 20's. I don't think it was related to Lyme. I had a test & it wasn't EBV, either. Who knows what it was?
Anyway, I cleaned up my diet & treated myself with herbs. The one that helped the most was astragulus. I was able to get completely well after 3 years of CFS. I was well for 8 years & then I started getting pain & fatigue again. That's when they told me it was fibromyalgia.
I was able t get well & stay well for 8 years. Buhner does not recommend astragulus for chronic Lyme, though. I'm not exactly sure why. It helped me alot 20 years ago.
Fatigue is rough. I know, I went through it. If you research enough & try different things - you may find something that will help.
If it's viral, artemesia may be helpful. There are a number of herbal anti-virals, too. I haven't worked with drugs - so, I don't know anything about them.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
Thank you for the info massman..unfortunatly I am not seeing that doctor anymore. I quit him a year ago after not getting better.
I only have a pcp and an endocrinologist at the moment.
I am sure I don't have CFS but I do have chronic fatigue...without the other symptoms of the syndrome. I don't have any pain at all. Just unrelenting fatigue.
sparkle7- I was told by the doctor it was some type of virus although I wasn't specifically tested for virus's until 2 years later. Just from my low wbc-high liver enzymes and high sed rate they told me it was a viral attack..who knows. I didn't show EBV or any of the other's associated with CFS.
I am willing to try herbals again...
Posts: 343 | From North Carolina | Registered: Oct 2008
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posted
So massman, we'll say I have numerous viruses, not CFS. I also was CDC positive for Lyme.
What you said back several posts is exactly what my LD said to me. Get rid of the Lyme, then it will take care of the viruses.
I don't think that is so. I have been on a year of orals, bicillin shots, and 9 1/2 months of IV Rocephin. I think I'm worse than when I started. Where do I go from here?
Posts: 847 | From upstateNY | Registered: Dec 2007
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sparkle7
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I had a fibro diagnosis & then a Lyme diagnosis - all clinical. I took the abx for about 9 months & didn't feel any different. I just felt worse from the side effects.
I think there's alot of "stuff" (pathogens, chemicals, toxins) out there that they don't even think to test for. My opinion is that you just have to try different things until you find something that helps.
Right now, for me - lactoferrin, noni, & artemesinin are what I'm working with + some other things... It takes alot of studying & trial & error. I never got very far with doctor's recommendations.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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massman
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kim and keltyl - access www.systemicformulas.com and ask for referrals to docs in your area that studied at their summer 2005 seminar that dealt with lyme.
Insanity is doing the same thing over and over again and expecting different results, according to Einstein. _______________________________________________ DISCLAIMER: No type of compensation for me for any recommendations I make here.
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I could try that, but guaranteed there will be noone near me within driving distance.
Posts: 847 | From upstateNY | Registered: Dec 2007
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posted
For all Fibromyalgia and CFS sufferers who have Lyme (or not):
Original Press Release from the Netherlands: FDA and NIH confirm 'XMRV findings'
Gendringen, NL (MMD Newswire) June 22, 2010 -- The FDA and the NIH have independently confirmed the XMRV findings as published in Science, October last. This confirmation was issued by Dr. Harvey Alter of the NIH during a closed workshop on blood transfusion held on May 26-27 in Zagreb. Two journalists from the Dutch magazine for health professionals, ORTHO, who have been working on XMRV stories for several months, were able to obtain a copy of the Alter lecture.
In the October 8, 2009 issue of Science Express, the Lombardi-Mikovits group at the Whittemore Peterson Institute (WPI), the Cleveland Clinic and the National Cancer Institute (NCI) reported that 67% of 101 chronic fatigue syndrome (CFS) patients tested positive for infection with xenotropic murine retrovirus (XMRV). Only 3.7% of 218 healthy subjects tested were positive for this gammaretrovirus. Since that time, a number of research groups have proved unable to independently confirm these findings.
On Friday last, the AABB released an Association Bulletin recommending that its member blood collectors actively discourage potential donors who have been diagnosed with CFS from donating blood or blood components. This interim measure was proposed by the AABB Interorganizational Task Force on XMRV. This Task Force includes representatives from several government agencies, including the Center for Disease Control and Prevention (CDC), the Food and Drug Administration (FDA) and the National Institutes of Health (NIH).
The fact that the measure was introduced suggests the presence of information not yet published. The ORTHO journalists were able to obtain a pdf document of the lecture given by Harvey Alter at the IPFA/PEI 17th Workshop on 'Surveillance and screening of Blood Borne Pathogens' in Zagreb. The International Plasma Fractionation Association (IPFA) represents the not-for-profit organizations around the world involved in plasma fractionation. The IPFA is based in Amsterdam, the Netherlands.
The highly-experienced Dr. Harvey Alter is Clinical Studies Chief at the Infectious Diseases and Immunogenetics Section of the Department of Transfusion Medicine at the NIH Clinical Center in Bethesda. "The data in the Lombardi, et al Science manuscript are extremely strong and likely true, despite the controversy", was one comment on the XMRV findings reported by Alter in Zagreb. "Although blood transmission to humans has not been proved, it is probable. The association with CFS is very strong, but causality not proved. XMRV and related MLVs are in the donor supply with an early prevalence estimate of 3%‐7%. We (FDA & NIH) have independently confirmed the Lombardi group findings."
ORTHO contacted Dr. Harvey Alter today for a reaction. He did not want to comment, but confirmed that a paper is soon to be published.
Posts: 277 | From Pennsylvania | Registered: Apr 2010
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massman
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posted
keltyl I always LOL at upstate. Do you know how dang big upstate NY really is ? What is your general area as I can help you try to find someone.
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I bet XMRV is just the tip of the iceberg.
I thought the FDA & NIH were denying it... I guess there's money to be made on retrovirals!
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
If I was dealing with a virus, I would use Rife type frequency treatments. the easiest thing to kill with this method is viruses in my experience. They do not seem to have any resistance to a destructive frequency.
I have seen two examples of Shingles go away after one treatment. One was with my wife, the other was a person on the Rife Forum, who also has had Ramsey Hunt Syndrome for over twenty years.
I also treated for XMRV which caused me slight abdominal pain that subsided with each treatment. I do not know if I had the virus, but the abdominal pain would indicate something was being hit, and removed.
I also have treated Colds and Flu effectively shortening up symptoms to as little as four days.
It is all experimental, but all indications i have are that viruses are easily disabled with this method of treatment.
Just one persons opinion.
Dan
Posts: 2919 | From Minnesota | Registered: Aug 2006
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posted
Ugh, I feel even more hopeless, so many people treated for lyme, so many the same or worse. Even more reasons not to treat.
-------------------- lisa theobald Posts: 111 | From madison wi | Registered: Nov 2008
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D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
My wife is experiencing no symptoms of Lyme now, and the disease may be gone altogether. It will take time to know for sure.
There are others also that have either greatly improved symptoms, and even a few cures here and there using various methods.
Don't assume you cannot achieve the same results. You might, you might not, but one thing is pretty certain, is you won't improve by doing nothing.
What were the odds that I could bring my wife back from crippling Arthritis, brain function problems, constant fevers and various other symptoms, to normal?
Near zero I would expect, but I was determined to do it, and it took me over seven years to find the method, improve it, implement it effectively and now it is done.
Nothing worthwhile is easy, but it is rarely impossible.
Go for it.
Dan
Posts: 2919 | From Minnesota | Registered: Aug 2006
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posted
I know I have lyme, but I don't have the more typical lyme symptoms, joint pain etc. I have some pain, but it's back that I've had for years, a little muscle pain.
Fatigue is the killer for me. I could work with back pain and interstitial cystitis for years, but it was a flu-like thing that came on, brought the fatigue and illness.
So I don't think treating for lyme will cure me. I'm worried about the poeple it made worse.
-------------------- lisa theobald Posts: 111 | From madison wi | Registered: Nov 2008
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The FDA and NIH have confirmed what the Whittemore-Peterson Institute discovered about XMRV. Allegedly, a paper will be forthcoming ... and until then, everyone is waiting with bated breath.
From what I've read, the symptoms of Chronic Fatigue Immune Dysfunction and Lyme overlap so that it's hard to tell which is which; however, with Lyme pain is more predominant, and with CFIDS, flu-like symptoms are more predominant.
Ictheobald, Lyme seems to run co-currently with CFIDS. Many people with CFIDS also test positive for Lyme. Many also test positive for mycoplasma infection and have high viral titers of a lot of different viruses.
I believe CFIDS is my main diagnosis, based on symptoms and history. But, I also tested positive for Bb.
I'll treat the Bb for a few months, and I expect to notice improvement or resolution in symptoms related to that. For the CFIDS/Fibromyalgia I intend to use natural anti-virals such as Olive Leaf until more information becomes available.
This is the lab that is doing the testing for XMRV in the US. (There's another lab in Belgium doing the testing for European patients).
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
People with Morgellon's Disease also test positive for Lyme. I thought that pain was more prevalent with Fibromyalgia & fatigue with CFS... I'm not sure where Lyme fits into the picture.
Then, there are the co-infections... The co-infections seem alot worse then Lyme to me. I don't know why they are relegated as an afterthought of Bb.
Not to mention viruses, etc.
I recently heard something about Autism. It's kind of out there but this lady had some information that she channeled through a psychic & wrote a book about it.
She said that Autism increased due to an accidental release of a bio-warfare dust from a military facility in NV. This dust in combination with a particular vaccine is the cause of Autism. The dust is supposedly a form of anthrax & the wind currents carried it throughout the country. Also, alot of food is grown in areas where the dust spread.
Who knows...? There are many strange things out there. I'm sure we don't even know the 1/2 of it. I had been hearing for years before I even thought about Lyme that Plum Island was not safe & that organisms/whatever could get out through the ventilation system.
There are top secret facilities in UK & Canada that I've read about, too. Since there isn't a really accurate way to tell what we have - it's all just a guessing game.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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quote:Originally posted by sparkle7: The co-infections seem alot worse then Lyme to me. I don't know why they are relegated as an afterthought of Bb.
I COMPLETELY agree, because the coinfections reproduce quicker and cause more immenent damage to our bodies! Luckily that also means they respond quicker to treatment, as long as you're on something that targets the right infection (and even then, what works for one doesn't work for another).
Unless something makes you worse with NO improvement at the end, you owe it to yourself to try all avenues, if it's possible.
Posts: 161 | From Southern United States | Registered: Sep 2009
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posted
Ictheobald- I started with a flu also and everything came after that.
I never thought I had the typical Lyme symptoms in that I had very little pain of any type. That is why I was always skeptical about my diagnosis. Although I also never had anything close to a positive test with anything..
I don't think I will ever know what happened to me..I can say the doctors have tested for everything in the past 6 years but I am still fighting the horrendous fatigue daily.
I can say that stress makes the tiredness worse and it is more of a physical draining fatigue than a lay down and sleep fatigue. Resting or sleeping doesn't help much...
I treated for 3 years and maybe this is what I am left with.
Posts: 343 | From North Carolina | Registered: Oct 2008
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Most people who have had untreated lyme for any length of time have a soup of infections, some can be tested for, many cannot because they are unknown or they are known but no tests have been developed yet.
My tests for babesia and bart were negative and yet I developed the long purple/red bart streaks once I started treating with doxy and some of my best improvement was seen with babesia treatment. There are known strains of both of those that have no tests yet and there are no doubt lots of strains that have not been discovered yet.
In addition to infections, some very real issues that can cause overlapping symptoms with Lyme/CFS/Fibro or whatever you want to call it can keep you sick.
Some of these issues are mold exposure (can be hidden behind walls), genetic issues such as KPU, Methylation cycle problems, inability to get rid of biotoxins, heavy metals, parasites, damage from lyme that needs to be addressed such as hormonal, quinolinic acid, heavy metal release from dying organisms, cellular debri, biotoxin debri for those with the genetic problems etc. etc...
As others have said, start treating and go from there. As sparkle said, it's like peeling an onion. If you have lyme and you are having symptoms, you MUST treat otherwise you risk becoming very ill, even bedridden as many of us can tell you from personal experience.
Best to peel that onion now rather than sometime down the road when you are sicker.
Stick around here. Learn all that you can. It is well worth it.
kim812 - keep peeling the onion. You will figure it out. Find a doctor who is open minded, knowledgable and who is willing to help you. If you don't already, then please take the threat of serious illness from mold, heavy metals, parasites etc. seriously. Don't underestimate them.
Those like me who have genetic issues that make detoxification very difficult will likely not get well until they use appropriate methods to get rid of their body burden of toxins. This requires specific protocols that target their problems.
Terry I'm not a doctor
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
Terry- I can honestly say I had a doctor who was willing to try everything to get me well. He worked with me for 3 years. I had so many tests...I mean ones I had never heard of.
I was treated for heavy metals through Dr. H even though they said the metal levels were borderline.
I was tested for parasites, mold, virus's, etc..all of it and nothing ever showed up. I sent away so many samples it was mind boggling.
I just really got to the point where I needed a break from abx and to just let my body alone for a while. I am not even sure my chronic fatigue is something that can be relieved. I have no other symptoms except my left calf (twitching and pain). Those were my first two symptoms and remain today 6 years later...all the others came and went.
It has been a year now since I stopped all treatments. I am doing okay...I don't think I will ever feel like I did prior to november 2004. The fatigue is constant and definately has a huge impact on my life but I can live with it.
Maybe in the future I will persue this further but as of now I am just going to do the best I can.
I just got out the last testing I had (April 2009) for parasites and molds and they were both undetectable. I would assume it was a valid test using a stool sample.
Thanks...
Posts: 343 | From North Carolina | Registered: Oct 2008
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massman
Unregistered
posted
Stool testing, especially for parasites, is very unreliable. How many samples did you send in for one test ?
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ukcarry
Frequent Contributor (1K+ posts)
Member # 18147
posted
I agree with Dan: you won't know whether the fatigue will go away with Lyme treatment until you try.
At the same time, there are plenty of people with Lyme who do not have significant fatigue, so I don't think CFS symptoms are NECESSARILY all Lyme.
Over a year's worth of rotating abx has not improved anything [except possibly my thyroid] for me, but many people have a different experience: it's not black and white,in my view and we all have different cocktails of bacteria, viruses, not to mention the genetic influence.
There is also the difficult decision of how long to stay on abx if you're not seeing improvements, as some people only improve after several years.
XMRV may well turn out to be why some people's fatigue symptoms do not go away with treatment for Lyme.
Posts: 1647 | From UK | Registered: Nov 2008
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posted
I actually did two seperate tests. My gastro doc had me do one and then 2 years later my doctor here in NH had me do another one at a different lab. I believe I sent in two containers because they wanted the samples 2 different days...
What would be the best test for parasites?
Posts: 343 | From North Carolina | Registered: Oct 2008
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