lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
? Ty
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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joalo
Frequent Contributor (1K+ posts)
Member # 12752
posted
Up.
-------------------- Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006. Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007
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hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
What is ME?
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8880 | From Illinois | Registered: Aug 2004
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- ME is the term for CFS in Canada and Europe.
myalgic encephalomyelitis
I would like to thank author Laura Hillenbrand for mentioning that ME is the better term for CFS when she was interviewed by CBS' Bob Schieffer a couple weeks ago - as an aside to her personal journey while researching and writing books "Seabiscuit" and "Unbroken".
Still, most U.S. doctors dismiss the ME term as much as they dismiss the "notion" of CFS. Most know nothing about it and just prescribe pallative Rx that can make it so very much worse.
There is no point in getting a diagnosis that describes the symptoms once you know you have at least one chronic stealth infection that can CAUSE CFS / ME, whatever term you call it.
There is no point in grasping for the diagnosis of CFS or ME if you don't have a doctor who is absolutely excellent in the field of chronic stealth infection and who is also very much lyme literate.
There are other chronic stealth infections that can be the cause or co-infection, too.
STANFORD University has a good researcher there.
Also get to know the CFS Association out of North Carolina for excellent work over the years -- and for the best doctors.
Still, if lyme or other tick borne infections are at the root of it, it's not going to go any good chasing after a diagnosis that only covers the symptoms or the results of a stealth infection.
It may be worthwhile, though, to see what other infections are found to also cause CFS / ME such as Cpn, Mycoplasmas, HHV-6 & other viruses, etc.
Methylation / MTHFR issues also should be explored.
You can't just drop lyme because it's too tenacious, though it is important to look as other causes / influences as well.
Start with these top-notch groups:
1. Stanford research group
2. Nightingale Research Foundation
3. CFIDS Association in N.C. - their journals are excellent
Most good LLMDs will know more about other chronic stealth infections, too. And many are very familiar with the work at Stanford.
Still, bottom line is identifying and addressing - for YOUR CASE - the cause(s) and fully addressing them, whatever they are and how many in number.
You can't just drop lyme because it's too tenacious - so do not underestimate lyme / TBD, though it is important to look as other causes / influences as well.
Any doctor you see should be fully LL in the best sense of that term. If they don't know about lyme, they will not be able to help sort out other matters and know what's doing what. -
[ 01-04-2015, 05:59 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You posted on the same date as this a "twin" post asking "how to get diagnosed with CFS?"
In that, you mention two things that grab my attention (and I just have to move on from there).
1. you "no longer test CDC positive for lyme."
I see that as having no bearing whatsoever on whether one has lyme or not. The CDC criteria simply is not reliable.
2. You mention as a hallmark symptom, "post exertional fatigue."
Well, that's a hallmark of lyme, many tick-borne infections, may other chronic stealth infections as well. And, other considerations such as mitochondria damage & adrenal dysfunction from infections, nutrient deficiencies, methylation issues, etc.
Cardiac matters also need to be considered but some damage from lyme is not going to show up on the radar of the average test nor be understood by most doctors, even cardiologists.
Liver / kidney damage can also cause fatigue. Liver damage from infections (and from Rx, OTC) can take a very long time to heal. Many with lyme develop chronic hepatitis.
Sorry to mention that yet it has to be considered. And, again, this may not show up on any liver tests for many years. Hopefully, though, if a factor, support methods can help with regeneration.
There is so much we have yet to learn about the heart, the brain, all body organs and functions, actually. The best and most basic approach while sorting this out is to not push yourself. If exertion results in fatigue, cut back on that while learning what else you can do along the way.
Too often, we push before our body can really manage that. Too often, we want to run and forget about how nice it can be to just walk.
This is a good place to begin with understanding some of the factors and some things that can help:
Topic: post exertional malaise/pain/herx...anyone had success getting rid of this? -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Really, most US docs simply won't use the term "ME" no matter what, but you should be able to get dx with "CFS" in New England. The doctor probably most likely to use "ME" instead of "CFS" in the Northeast is probably Dr. E. in NYC.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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