posted
I have been recently diagnosed with CFS, though I have two positive bands test on my Quest Lyme tes (test results still not back from Igenex).
What symptoms made you and/or your doctor feel that it may be Lyme instead of CFS? I just don't feel comfortable with my CFS diagnosis.
He has put me on very strong immune boosters, and I am herxing like crazy: spaced out, full body rash, achy, crying, nausea...
I have an appt with an excellent LLMD at the end of May (thanks to a great recommendation from this site), but the suspense is killing me!
Thanks all. mazou
Posts: 636 | From Saratoga County, NY | Registered: Apr 2008
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ralph
Unregistered
posted
IMO about 90% of CFS is actually lyme.
Lyme does nail the nerves in many cases, and the adrenals have tons and tons of nerves associated with them, so > > > lots of fatigue, but actually caused by Lyme.
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posted
Thanks for your reply, and I think I agree with you about the percentage. There are just so many overlaps. Have you heard of that Doctor (I think he is in Boston) who believes that they (CFS, Lyme, and Fibromyalgia) may all be the same thing?
BTW, what does IMO mean?
Posts: 636 | From Saratoga County, NY | Registered: Apr 2008
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ralph
Unregistered
posted
IMO = In My Opinion
Have not heard of that doc, but I have studied with a Jean Reist, north of Philadelphia that introduced the idea to me that CFS, FM, RA, MS, ALS and a lot more are actually lyme. She was saying this at least 5 years ago.
And recent evidence is showing that at least 35% of autism is lyme related - which makes a lot of sense to me. I have done some work with autistic kids.
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posted
That is really something. Makes me wish for a negative diagnosis, since I have a beautiful 17-month-old, and I would never have wanted to pass it to her. She, however, shows absolutely no symptoms, but I will watch her like a hawk.
My warmest thoughts to you for working with autistic children. What a wonderful thing to do.
-mazou
Posts: 636 | From Saratoga County, NY | Registered: Apr 2008
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It did seem to be a hasty diagnosis. Like, check, check, check, ok! You have Chronic Fatigue. Here we go, let's do this and this and this... I was thinking: "slow down a minute!" So I did.
But it is probably satisfying for a doctor to make a diagnosis. I know he has helped many people, so I have no personal problems with the doctor. I just feel as if I am being viewed through the "lens" of CFS, rather than looking at a bigger picture.
mazou
Posts: 636 | From Saratoga County, NY | Registered: Apr 2008
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posted
Please do not get into the box of CFS. What I mean is please for your sake look into every possibility especially lyme. Personally I think Quest is garbage for Lyme. Please get tested by Igenex. Teresa
Posts: 115 | From warwick, new york | Registered: Mar 2008
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posted
I think it was the hundreds of tick bites I'd had which made us think it was Lyme!!
If they dx you with CFS or FM, they don't have to do much for you. Just treat symptoms. Most drs are smart enough to do that.... but they don't want to touch the problem of Lyme diseease.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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posted
Okay, as a 16-year CFIDS patient, I have to disagree about the percentages and also the idea that CFIDS is readily diagnosed. Although the CDC did water down the case definition of CFIDS, it's not a simple or easy diagnosis to get.
That said, it's a diagnosis by exclusion, and if you have Lyme, by definition you don't have CFIDS (except in my case, where my positive Lyme tests came much later).
A study was done in Australia that found CFIDS developed equally among three groups that had acute illnesses. One of the illnesses was Q Fever, a tick-borne coinfection.
I think Lyme too can cause a CFIDS-like illness, but so can other things, like brucella, mycoplasma, HHV-6, chlamydia pneumoniae, etc.
However, if you have positive Lyme bands, by all means, you should be treating Lyme, because it's actually TREATABLE, whereas CFIDS really isn't. And, if you have a positive clinical response to antibiotics, you have Lyme. And if you don't, you might still have Lyme and coinfections that require a more complicated treatment.
I've been bedridden for most of the last 16 years, and I have tried everything CFIDS research has to offer, except for the newer antivirals (though I've tried other antivirals). There's just no effective treatment if you're really sick. So working with an LLMD and bypassing all the immune boosters and other (in my experience) expensive and generally ineffective stuff out there is definitely the way to go.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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posted
IMO, something is causing the chronic fatigue, whether it be Lyme or some other illness. CFS is merely a description of symptoms of an unknown origin.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Thank you, LymeCFIDSMCS. I respect your thoughts and knowledge. I am new to all of this, so the more information, the better. From the looks of the patients in my Dr.'s office, I can certainly see the misery that CFIDs can cause, and wish you a steady road to recovery.
mazou
Posts: 636 | From Saratoga County, NY | Registered: Apr 2008
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posted
for over ten years I had fatigue, joint pain, swollen glands. then i got IBS, bladder problems. then in 2004 I was hospitalized with heart failure, meningitis, cranial nerve palsy - thats when i knew
Posts: 615 | From maryland | Registered: Oct 2007
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which is the best CFIDS site on the web (and argues why CFIDS should not be called CFIDS at all, but use the European name, Myalgic Encephalomyelitis.
It's a fact that 25 percent of the population suffers from idiopathic chronic fatigue, but this does not mean they meet the diagnostic criteria for CFIDS.
There is a lot of overlap in information between the CFIDS and Lyme communities, so if you keep exploring on both sides, hopefully you'll get answers soon that lead to good treatments.
I did not have any positive bands on early WB testing from Igenex, so I didn't have strong reason to believe in years past (until this last year, when I was bit by a tick and my tests turned positive) that I had Lyme, even though I know negative tests can be meaningless. But you DO have reason to believe you have Lyme, so hopefully this knowledge will take you to the right places.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I had CFS when I was about 28 (I'm 46 now). I was able to get over it in about 3 years by taking herbs/supplements & eating well.
CFS felt different to me than Lyme. I was originally diagnosed with Fibromyalgia not Lyme about 10 years ago. The difference with CFS was that I was fatigued - I couldn't stop sleeping & my lymph nodes were enlarged. With Lyme, I had more pain which eventually led to neuro symptoms & hormonal symptoms.
Everyone has different symptoms, though. There are over 300 strains of Lyme.
I think that CFS is caused by viruses. So, you could have tests for viral causes like various herpes viruses, epstein-barr, CMV, etc. to rule it out. Also have a test for mycoplasmas. Lyme can also be present along with these other things.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
Thanks for your great replies. I do not have that "I can't get out of bed" feeling that others I have know with CFIDS had, and my mental symptoms are simply bizarre. This is why I am testing further.
I did not know that ME was the same as CFIDS! The name may help a lot with legitimizing the condition. I know there is a certain amount of eye rolling that goes on when someone says they have "Chronic Fatigue Syndrome."
Thanks again. mazou
Posts: 636 | From Saratoga County, NY | Registered: Apr 2008
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daise
Unregistered
posted
Hi mazou,
quote: sixgoofykids wrote:
IMO, something is causing the chronic fatigue, whether it be Lyme or some other illness. CFS is merely a description of symptoms of an unknown origin.
Yes.
Many fibromyalgia cases are caused by Lyme, as well.
Do you have signs or symptoms other than chronic fatigue? For example, in your GI, muscles, bones or joints?
posted
Talked with an "alternative" MD this afternoon - have known him for about 10 years. He often finds that the bacteria are at the heart of the matter and that most other infectious agents are opportunistic.
This means that after the bacteria drag the body down then other things like virus, candida etc move in. This makes good sense to me as the typical history of CFS is those who have it were typically go getters. And when they went over the "edge of the cliff they hit the bottom and had great difficulty getting much energy back.
I feel that is when the co-infections come into play and keep them down.
I have been taught that lyme is the "second great imitator" and can and does express itself very differently in many people. I am sure you know many with CFS have been told it is all in their head.
Today our bodies are essentially made of junk parts from our lousy food supply and toxic from our chemical environment. This contributes to many health problems we now have.
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
The one thing I did notice that was similar for both Lyme & CFS was that I got a bad flu type of illness to start off with for Lyme & CFS.
ralph - I thought of it when you mentioned "opportunistic"...
It's hard to say exactly what I had or have now since the tests are not reliable. I have been able to rule out most of the other things like mycoplasmas, viruses, etc.
When I had CFS I tested negative for epstein-barr. It's all kind of mysterious about these illnesses. I also tested negative on several tests for Lyme... I had a clinical diagnosis.
My epstein-barr was alittle elevated but my doctor says that's pretty common these days. Even my mercury level was within normal range. Many people with Lyme also have high heavy metal levels.
It is hard to figure these things out. Sometimes these things can be at a "sub-clinical" level & still affect us.
Different blood tests can be used by smart doctors to put the puzzle pieces together. I had about 40 different blood tests & my doctor was able to finally figure out that my "fibromyalgia" was really Lyme.
Sometimes the doctor has to read between the lines & look for other clues than the standard tests.
BTW - I know someone who got epstein-barr/mono from a vaccine...
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
Great information about the bacterial infections. It makes a lot of sense, that the body gets dragged down by a central infection, which leads to the opportunistic infections. I had candida for years (Threelac cured me) and always wondered why it kept sticking around. I felt I ate well, stayed off sugar, but something was wrong at the core.
Thanks for asking, Daisi, my symptoms are mainly mental (derealization, confusion, short-term loss) and arthritis (sore feet/heels, stiff, achy legs and a swollen knee). I think the fatigue is more the result of dealing with the above while trying to balance my life obligations.
Posts: 636 | From Saratoga County, NY | Registered: Apr 2008
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posted
This is really interesting. I've been pondering this myself, and my LLMD and I have discussed it.
I had classic CFIDS long before it had a name.
I had a terrible flu that turned into years of terrible fatigue. I was almost completely bedridden at first--sleeping up to 20 hours a day. Fatigue and sleeping long hours without feeling refreshed were my only symptoms.
Gradually (say 4-5 yrs), I got better, and went for years living what looked like a normal life. I needed to watch my energy and not overdo it.
Then I got sick with what was later diagnosed as FM, with symptoms that overlap with lyme symptoms.
Then, 2 years ago, I was hit with excrutiating pain from out of nowhere. This was at a time I was feeling pretty good, but I went into a full relapse.
I happened to go to a new doctor who is lyme literate, and he recognised lyme disease. Even he can't tell me if I've had lyme all along, and it was just slowly progressing, or if I did have CFS back then, and later got lyme.
BTY, my Igenex came back negative. The CD57 was the only test that supported the lyme diagnosis.
I think I had CFS/ME first, and then lyme, which was first misdiagnosed as FM. That's my story, and I'm sticking to it!
Posts: 552 | From New Mexico, USA | Registered: May 2007
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I have a very similar story, daisys.
CFS when I was 28.
Took me about 3 years to get back to "normal".
Fibro when I was 36 which turned out to be Lyme when I was 45 (I'll be 47 this October)...
I figured I'd be able to kick the Fibro since I was able to get well from having CFS but it just kept getting worse & worse.
We don't know what all these things really are. My tests haven't been very conclusive about anything in particular (& I've had alot of tests done).
The diagnoses I've had were all clinical.
Maybe it isn't Lyme? Who can tell? May be some form of bio-warfare for all we know...
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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daise
Unregistered
posted
Hi Mazou,
I'm glad you're getting tested. Remember that the tests aren't true for everyone. Mostly, it's that you have mental stuff and arthritis: both. That makes me wonder if you could have Lyme.
posted
Sparkle7, Thank you for posting that. It's a very general body of information, but does dignify the illness, and every one of them counts.
I'm waiting for more articles that find subtypes that are identifiable by tests that doctors accept. Most are resistant to change, it seems to me, but they do respect their tests.
Posts: 552 | From New Mexico, USA | Registered: May 2007
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posted
If memory serves me correctly, I first heard about CFS around 25 yrs ago. It was called "yuppie flu."
They said many of the people who had it were active people. People who often hiked, biked, loved the outdoors and were hard workers. [hence the yuppie name]
Sounds like Lyme to me!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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posted
I remember the yuppie flu! It seemed so unusual; a condition where someone is tired all of the time, with no "apparent reason." That was the first I had heard of such a thing. Then Fibromyalgia came along. Then MCS... GWS... Lyme... I mean, is all of this stuff "new"?
My ex-almost-brother-in-law had a Fibromyalgia diagnosis for a time in the 90s, and he was just so tired and achy, I had never seen such a thing. A big strong guy who could put up a new roof in one afternoon was suddenly sitting on the couch in the dark all day, not able to work.
People didn't have this kind of stuff when I was a kid! Or maybe they did, and just brushed it off as something else.
Posts: 636 | From Saratoga County, NY | Registered: Apr 2008
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I had "yuppie flu" back in the 80's... I wasn't a yuppie at all. I also lived in Brooklyn, NY & don't recall being bitten by any ticks. I didn't go out of the city much back then but it is possible. I used to go to the park.
I do remember having a bad flu prior to getting the fatigue. Who knows... it may have been Lyme back then?
Yeah, the genetic testing as specified by the BBC article leaves something to be desired... like a solution. They've been doing "genetic testing" for years now.
There are other studies like this from 2005. When are they going to come up with some solid evidence of what is going on?
When are they going to find some relief for those of us suffering with these illnesses like Fibromyalgia, CFS/ME, Lyme, Gulf War Syndrome, etc.?
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
I think if you have any doubt about your diagnosis, get as many opinions as necessary until you're comfortable with it.
First I was told I had Fibromyalgia. That was when my only real problem was joint pain. Out of the 11 tender points you're supposed to have, I had 2. But he said it was Fibromyalgia anyway, so I went with it.
Then it was Lupus. Where the medications for Fibro didn't do anything, the meds for Lupus made me worse.
When the fatigue was bad enough that I could barely get to classes, and I started seeing spots and losing words, I got bumped to a neurologist. He saw me for all of about 5 minutes, and decided I had Chronic Fatigue Syndrome. I went to another neurologist the very next week for a second opinion, and he thought I had MS.
This was about a year and a half worth of doctor visits and useless medications. Eventually, a friend of mine (who has Lyme) suggested that I see an LLMD, just to check.
My western blot came back very much positive. I don't think it was any particular symptom that would have made me think Lyme, but CFS is supposed to be a diagnosis of exclusion, and my doctors didn't really check all options. For one thing, my LLMD said I'd had mono, which was news to me. Despite complaining of crushing fatigue, not one doctor thought to check for that.
I know doctors probably hate that people do this, but if it hadn't been for me poking around on the internet, checking symptom lists, and being a general nuisance to my doctors, I'd have just kept getting sicker. For all the diagnoses I've been given, I never felt like "oh! that's it!" until my bloodwork came back positive for Lyme.
Posts: 306 | From Brownsville, PA | Registered: Jul 2007
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
In my opinion, CFS is a "label" not an "illness". It essentially means that someone blew a fuse due to a number of stressors on the body.
If one looks at Lyme as more than Borrelia, we could also consider it a "label" for a number of things gone wrong that must be undone layer by layer.
I think Lyme however is a name for an infection/illness that is a component of the larger chronic illness we all know as "Lyme disease" which is much more than Borrelia.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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quote:Originally posted by mazou: Then MCS... GWS... Lyme... I mean, is all of this stuff "new"?
My ex-almost-brother-in-law had a Fibromyalgia diagnosis......... A big strong guy who could put up a new roof in one afternoon was suddenly sitting on the couch in the dark all day, not able to work.
1. NO! just new "names" 2. Please contact this person and urge them to get tested for Lyme!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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posted
I just have to interject here again. The whole idea that CFIDS is a "vague" illness or vague "label" with vague symptoms is pure successful government propaganda.
It's no more vague than neurologic Lyme. It's absolutely devastating, an illness that leaves most patients disabled, many completely bedridden, and most without hope of viable treatments. Only 4 percent of patients ever fully recover.
There are patients who die, end up unable to speak and living out their lives in darkened rooms, etc. The "Yuppie flu" label was a denigrating label created in a government conspiracy to squelch the truth of a horrifying epidemic. A lot of people think they have CFIDS but they're just fatigued.
There really isn't anything vague about it, believe me: I've had it for 16 years and been bedridden and incapacitated beyond my wildest imagination for most of those.
Please be careful talking about it as "vague" or not real, because this does a lot of harm to patients, just as people talking about Lyme in the same way does a lot of harm to Lyme patients.
posted
Chronic fatigue "syndrome" CFS, is not an illness or a disease, it's a cluster a symptoms. Of course, it is a real group of symptoms, but it is a symptom, not a disease. If you go to the doctor, and complain of being tired all the time, for 6 months or more, you are probably going to be diagnosed with chronic fatigue. You have to use common sense here. You have a symptom, and you are being diagnosed with a symptom. It makes no sense! You need to find out the cause! Lyme disease, and the bacteria b.burgdorferi are the cause of the chronic fatigue. People join chronic fatigue support groups, they go on disability, they tell their family "I know what's wrong with me now, and I have chronic fatigue." I still find it amazing just how many people get sucked into this giant conspiracy and line of thought. None of it makes any sense, yet we are so happy to have a diagnosis, we accept it. Meanwhile a cause is not found, and the person is left with an undiagnosed and untreated infection.
Many thousands of people believe they have fibromyalgia, chronic fatigue syndrome, depression, multiple sclerosis and more, and still they have no idea what the cause is. Wake up people and think with your brains! Normal, healthy people do not just suddenly come down with MS, or are exhausted all the time for no reason, there is always a cause. Do not buy into the word syndrome either; it is just a word for a collection of symptoms for which the doctors label a syndrome because they have no idea what is wrong with you. The same thing is true for treatment of diseases. People seek out a cure, and what they get is not a cure, but medication to treat the symptoms. An example of this in Lyme disease is anti-inflammatory drugs, NSAIDS, or steroids prescribed to treat painful joints. The medications will work on the symptom, the pain, but the cause of the pain goes untreated. The smart treatment would be antibiotics, which directly kill the cause, plus supportive prescriptions to treat the symptoms and make the patient more comfortable. Therefore, in the previous example, the patient benefits from treatment aimed at the cure, plus they get symptom relief. Seek the cause people, always seek the cause.
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
I was dx with CFS in '90. Then 3 TBI in '97 - all along the TBI were ignored - and still are - by local doctors.
For years, then I put aside most of what I had learned about CFS.
While it's vital to be evaluated for stealth bacteria and viruses that may be the cause of CFS (or FM, etc.), I still find some of the research coming from the CFIDS Association to be extremely valuable.
I think the CFIDS Association has done much research on the damaged bodies/brains and some of what they find out helps me understand the processes and some of the things I can do to help myself. Most of all their research has helped me stop hating myself for being so tired and understand why, with hope for change.
I have seen some Lyme research (and mycoplasma) come out of the CFIDS group - or be printed in their literature, however, I do wish they would open up to that more. Some folks get stuck with that label and that can be very detrimental.
-
RALPH - from page one:
you wrote: "Lyme does nail the nerves in many cases, and the adrenals have tons and tons of nerves associated with them, so > > > lots of fatigue, but actually caused by Lyme."
WOW . . . I never thought about the nerves in the adrenals. Thanks for that light bulb.
also. some of the adrenal stuff comes from the brain and the hypothalamus/pituitary/adrenal axis. It's very complex.
If the brain tells the adrenals they have to put out more energy, they say sure - even past the point of exhaustion they may try, but then it's very detrimental.
Posts: 48021 | From Tree House | Registered: Jul 2007
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I have to agree that these illnesses are not "vague".
I don't agree with this either - "Chronic fatigue "syndrome" CFS, is not an illness or a disease, it's a cluster a symptoms. "
This is completely untrue. Especially given the recent research on sub-groups of people effected by CFS/ME.
I think there is a definite cause for these illnesses we are having. The tests for these things are inadequate. These illnesses are being caused by stealth pathogens, viruses, bio-engineered bacteria, mycoplasmas, parasites, etc. It is being made worse by exposure to environmental toxins, pesticides, toxic chemicals, heavy metals, etc.
The illnesses are being caused by definite things being released into the environment. It is not "vague". I believe that these things are being released into the atmosphere on purpose. The answers are there but we are not being given access to the complete scenario.
I believe that there is a plan & an agenda. These illnesses are not a coincidence. These pathogens are being engineered & targeted to various genetic types.
The information about these pathogens is being obstructed & misconstrued to keep the public misinformed. It's disinformation to keep the public ignorant. It's called counter-intelligence & it's being used against us.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
"Chronic fatigue "syndrome" CFS, is not an illness or a disease, it's a cluster a symptoms. "
I believe it, because I believe CFS IS Lyme. But then, that's just me.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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bettyg
Unregistered
posted
imho means in my humble opinion to whoever asked!
cfs/etc. has been around 100 years too; somewhere i have a list of EVERY NAME it's been called over the years, but no time to search for this now!
i was 21 when dx with MONO, which i now know was EPSTEIN BARR virus; later came CFS, later dx w/fibro in all 18 of 18 tender points, and the list goes on.
i was dx finally w/lyme due igenex's western blot igm and igg blood test.
i had ALL symptoms of early Alzheimer's disease that my 40 yr. old sis-in-law died from in 93; i knew every symptom well. i tested for lyme to just eliminate it .... guess what?
from age 21 to now, 38 yrs. later...CHRONIC LYME! misdx for 34 yeras by 40-50 drs.
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posted
SForsgren, I agree with the blew a fuse idea. I think there is just so much out there to overwhelm our systems. I mean, just food alone is so full of chemicals now, even the "natural" stuff.
And, Lymetoo, I will see what I can do to contact my ex brother-in-law. I appreciate what you are saying.
This is the greatest discussion, and I have learned so much from you all. I will be travelling to Tunisia, leaving tomorrow, for two weeks. My appointment with "Dr. R" is the Tuesday I get back. I'll check back in when I return.
Posts: 636 | From Saratoga County, NY | Registered: Apr 2008
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WildCondor
Unregistered
posted
Syndrome= cluster of symptoms Chronic fatigue=symptom
Add them together you get a diagnosis of a cluster of symptoms of which the cause is not identified = does not make common or medical logical sense
the cause must be found, and if you don't seek the cause, you are being lazy and uneducated. If you accept the fact that you have been diagnosed with a cluster of symptoms, and stop there...you will never get well.
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posted
I have to respectfully disagree again. I think it's a little insulting to portray CFIDS patients as people who got an easy diagnosis or who don't search for every treatment and possible aspect to treat. After following both communities for a while now, I really think they have a lot to gain from following each other's research.
Just about everyone I know with CFIDS has tested for Lyme. Some have seen LLMDs and gotten treatment with no results, with positive results or not. Some have had negative tests and just stopped, though its possible they really have Lyme. Most have explored viruses, mycoplasma, chlamydia pneumonia, genetic factors. Most follow the research with searching intelligence.
The CFIDS list I've been on for over ten years, which has over a thousand CFIDS patients on it, frequently has posts about Lyme and coinfections.
Myalgic Encephalomyelitis, which CFIDS is if it's properly diagnosed, has been around as a diagnosis since the 1930s if I remember correctly. The US government, in a huge cover-up you can read about in the book Osler's Web, "rediscovered" the illness in the US in the early 80s, then renamed it so it would sound trivial, then misspent most of the funds allocated to study it.
They originally defined it as a diagnosis that required at least a 50 percent reduction in all activities for 6 months or more, along with other symptoms, and it's a diagnosis of exclusion, so all other similar conditions had to be ruled out.
They changed their guidelines despite protest to include more cases that really are just idiopathic fatigue, and most CFIDS patients are incredibly upset about this because it leads to the idea that it is just some vague fatiguing condition that is easily diagnosed. ME is classified by the WHO as a neurologic illness.
50 percent reduction in activities means that those who were diagnosed when I was could not possibly still be working, unless they were barely working part-time and barely able to do anything else. Every person I knew at that time with CFIDS was too sick to work and severely disabled.
Post-exertional symptoms are also hallmark of CFIDS, and would disqualify a lot of people with Lyme.
Most people with CFIDS never get diagnosed. It's very hard to get a diagnosis. One study found that something like 11 percent of people ever got diagnosed who actually qualified for the diagnosis. So it's much like chronic Lyme: people going to doctor after doctor in a searching attempt for a cure.
So to say anyone who has been tired for 6 months or more would instantly get diagnosed is statistically inaccurate.
And many CFIDS patients have responded well to antivirals for HHV-6, etc., as well as immune-modulating drugs like Ampligen. They'd love to know the exact reason, but sometimes it's really hit or miss and it's just not always as simple as saying CFIDS=Lyme.
The testing just isn't there yet, but CFIDS patients show remarkable findings: dramatically reduced cardiac output, low blood volume on the level of someone who has bled to death, etc. Every system of the body is affected. It really has almost nothing to do with fatigue and "chronic fatigue" is not the same as CFIDS in a clinical sense, not even remotely similar.
I think there is substantial overlap between Lyme and CFIDS and coinfections, but it's hard to say how much at this point and I think it's dangerous to generalize.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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cottonbrain
Frequent Contributor (1K+ posts)
Member # 13769
posted
It took me five years and over 20 docs to get a dx of CFS. That was over ten years ago, before the internet had much info. I was elated to have a diagnosis finally.
Now that I know that Lyme and co's are the cause of my CFS, I rue the day I ever got the CFS diagnosis.
That CFS dx prevented me from getting the care i needed all these years. My CFS doc was a renowned specialist who sits on the CFS Advisory Board, so I respected him.
Looking back, all he ever did was hug me and tell me to live within my envelope.
If you have a CFS diagnosis, please find out if you have Lyme and co's.
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