After 7 years with ME/CFS - My wife has Lyme disease

Folk

Well-Known Member
Can't read the site neither translate it, what lenguage is it?

I did tests for lyme in different labs and it came mostly negative in almost all of them and Borderline for one strain in one lab. The paper said it probably meant I didn't had lyme... I know that for Dr. De Meirleir for example that means you have Lyme 100% sure.
Anyway for others Lyme experts you have lyme even if it's negative, just based on your symptoms...

Since I've never seen a De Meirleir patient getting better, and I've read at least 5 threads from different forums where the person tells the treatment for 1-2-3 years and other small ones, I didn't go that route.


How was that avaliated for your wife? What kind of test?
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Can't read the site neither translate it, what lenguage is it?

I did tests for lyme in different labs and it came mostly negative in almost all of them and Borderline for one strain in one lab. The paper said it probably meant I didn't had lyme... I know that for Dr. De Meirleir for example that means you have Lyme 100% sure.
Anyway for others Lyme experts you have lyme even if it's negative, just based on your symptoms...

Since I've never seen a De Meirleir patient getting better, and I've read at least 5 threads from different forums where the person tells the treatment for 1-2-3 years and other small ones, I didn't go that route.


How was that avaliated for your wife? What kind of test?
The diagnostic tests are the big question - such a murky field....
 

Folk

Well-Known Member
The diagnostic tests are the big question - such a murky field....
The treatments too right?
You don't see much people getting better from long course abx. :|

My doctor wants to go after bartonella now, which makes me kinda worried.
 

Flora

Member
Hey, All,
I'm finally getting back into my old Lyme tests. I must call contact my ex fms/CFS Dr that tested me Lyme Positive in 2012 thru IGeneX for those test results again. No Co Infection tests were done at that time. I'm going to try to get a full panel done thru my PCP- primary Dr for Mats Lindstrom. I can only inform from my own experiences. I've got Medicare/Medicaid which should cover it, as well as C4 tests and CD 57 tests. It is my understanding that a low CD57 test indicates a Lyme presence due to low numbers of 57NK cells. That would be a next step. Mine in 2011 was 23, in 2012 was 33. Below 200 (the range is 0-350) indicates chronic Lyme presence. A C4a test came out high, mine was 12,279, a reference range is 0-2830. I was told this would infer Lyme, mold, yeast and neurotoxins. My present treatment choice is a Rife machine, a GB-4000 with a SR4 amplifier. From what I'm reading the Cowden herbs can drill the spirochetes deeper, and put it into dormancy but it's still there. The same for hyperbaric oxygen. But the Rife signals are like a stealth strike, the buggers don't anticipate the incoming. Varicella reproduces rapidly, so at least ok initially it has to be rifed on at least 1X every day. You can check Bryan Rosners site. Also LymeNet Flash has an already 65 page message board for its Rife community.
 
Hmmm most patients who have ME, have Lyme as well amongst many other bacterial and viral infections, pretty common. If she just had Lyme it would be beneficial for a long course of antibiotics to get well. It sounds like she has ME first by her onset so treating with antibiotics may cause more harm than good, thus the reason demelier patients do not get better.
 

Folk

Well-Known Member
Hmmm most patients who have ME, have Lyme as well amongst many other bacterial and viral infections, pretty common. If she just had Lyme it would be beneficial for a long course of antibiotics to get well. It sounds like she has ME first by her onset so treating with antibiotics may cause more harm than good, thus the reason demelier patients do not get better.
That's not really accurate Michael... At least with what we know.
I've never seen a Dr. say Most ME patients have both "ME and Lyme, among with other bacterial or viral infections"

De Meirleir says most ME patients have Lyme as a direct cause of the ME.

Others doctors tend to think you might have one or another (those who believe in Lyme).
 
That's not really accurate Michael... At least with what we know.
I've never seen a Dr. say Most ME patients have both "ME and Lyme, among with other bacterial or viral infections"

De Meirleir says most ME patients have Lyme as a direct cause of the ME.

Others doctors tend to think you might have one or another (those who believe in Lyme).
Ummm thats basically what I said..ME first w Lyme coinfection ...Lyme or ME...is that acurate enough for you?
 

Tammy7

Well-Known Member
Epstein Barr Virus can raise false positives on a Lyme test. Perhaps this is one of the reasons so many people with CFS/ME are also diagnosed with LYME?
 

JennyJenny

Well-Known Member
I am chocked! She has been negative tested two times with ELISA. Today, finally, we found lyme disease and a lot of other co-infections in her blood.
/
I don't know if she has ME/CFS and Lyme or just the unfortunate misdiagnosis of a Lyme patient as ME/CFS. Happens enough. Lyme tests are wonky, WONKY!

Now, I cannot say for certain but from what I HEAR from ME, CFS and ME/CFS patients is that we don't have pain in the joints like a Lyme patient does. I don't except now 32 years later and starting at 50 I have OA in wrists and possibly ankles. But I never had joint pain my first 32 years of ME/CFS and so the Dx was OA in R and L wrists.

Also, ME/CFS can usually be traced back to a viral infection. I was walloped with MONO. That is why the SEID criteria gave a viral onset without a true recovery. People are "never right again" and not long after if not immediately never have the same strength or are experiencing PEM, things like that.

And if you think there is a problem with the CFS name, the problem with ME is an inflamed brain and muscle pain can come from a LOT of illnesses and diseases so even though we know ME in the truest sense has that PEM marker, too many other issues are causing inflamed brains and muscle pain. Dr. Nancy Klimas does not like CFS or ME and did put forth along with colleagues their own name which I cannot remember but this disease needs its own name. It could turn out that they begin numbering it such as ME1 is what we now know as ME/CFS and ME2L due to Lymes and ME3NHV due to a non HIV retro virus and ME4whatever due to whatever. And only a LOT of bio-research is going to figure this out. And there very well may be stages in each of these ME1 2 3 4 diseases.

I am sure the ME/CFS research at Stanford, Nova South Eastern and Columbia test with 2 or 3 types of Lyme disease tests because their being in infectious disease they are smart enough to really rule out Lyme so I believe they are working on pure and true ME/CFS patients.

But you are not the first to be surprised by a Lyme Dx.
 
I don't know if she has ME/CFS and Lyme or just the unfortunate misdiagnosis of a Lyme patient as ME/CFS. Happens enough. Lyme tests are wonky, WONKY!

Now, I cannot say for certain but from what I HEAR from ME, CFS and ME/CFS patients is that we don't have pain in the joints like a Lyme patient does. I don't except now 32 years later and starting at 50 I have OA in wrists and possibly ankles. But I never had joint pain my first 32 years of ME/CFS and so the Dx was OA in R and L wrists.

Also, ME/CFS can usually be traced back to a viral infection. I was walloped with MONO. That is why the SEID criteria gave a viral onset without a true recovery. People are "never right again" and not long after if not immediately never have the same strength or are experiencing PEM, things like that.

And if you think there is a problem with the CFS name, the problem with ME is an inflamed brain and muscle pain can come from a LOT of illnesses and diseases so even though we know ME in the truest sense has that PEM marker, too many other issues are causing inflamed brains and muscle pain. Dr. Nancy Klimas does not like CFS or ME and did put forth along with colleagues their own name which I cannot remember but this disease needs its own name. It could turn out that they begin numbering it such as ME1 is what we now know as ME/CFS and ME2L due to Lymes and ME3NHV due to a non HIV retro virus and ME4whatever due to whatever. And only a LOT of bio-research is going to figure this out. And there very well may be stages in each of these ME1 2 3 4 diseases.

I am sure the ME/CFS research at Stanford, Nova South Eastern and Columbia test with 2 or 3 types of Lyme disease tests because their being in infectious disease they are smart enough to really rule out Lyme so I believe they are working on pure and true ME/CFS patients.

But you are not the first to be surprised by a Lyme Dx.
Yea I kinda agree..I think ME is fairly easy to diagnose..viral infection then at least PEM and muscle fatigue thereafter..not too difficult to understand. That was right on my experience. Then all kinds of virus, bacteria including Lyme, toxins etc accumulate
 

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