IS CFS/ ME lyme?

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Regular Member

Date Joined May 2015
Total Posts : 44
   Posted 5/6/2015 7:52 AM (GMT -6)   
My dr who is a world authority on CFS/ME has tested all his CFS patients for LYme .HE has begun doing this systematically since 2012 with the BOrrelia ltt elispot from Germany.Over 95%of his patients are postive on this test me included.
So I have been "rebranded" as having lyme disease
This summer a publication will come out about 4 markers with whom you could identifie Lyme patients
Those 4markers are PGE2(increased) IL8 (increased)sCD14 (increased)CD57(decreased)
I wonder if this will make a difference
My question on the CFS forum
Do people with cfs think it might be possible they all have lyme disease?

Ihope this be something up for discussion

Elite Member

Date Joined Mar 2003
Total Posts : 10407
   Posted 5/6/2015 10:04 AM (GMT -6)   
I don't know about that, but I've certainly seen a lot of people with Lyme who are convinced every disease known to mankind is really Lyme or is caused by Lyme.
Thyroid forum moderator

Ulcerative colitis; 8th year of remission with Remicade. Inflammatory osteoarthritis; osteonecrosis from steroids. Grave's disease post-RAI and now on Levothyroxine. Type II diabetes induced by steroids.

Veteran Member

Date Joined Jun 2008
Total Posts : 732
   Posted 5/6/2015 9:16 PM (GMT -6)   
No I do not think CFS & Lyme are the same illness. I have CFS & have never thought that I have Lyme disease. I have read the progression of Lyme to really check it out & it is not even close to how mine progressed. Nor after 10 years does it look like Lyme now. You may have Lyme, I hope you do because it is treatable but I wish there was no chronic illness at all. Take care, hugs, Denise
Fibromyalgia-dx'd: 2006, ME/CFS-dx'd: 2006, Holt-Oram Syndrome dx'd 1975, reduced lung capacity dx'd 2009, nasal allergies, food allergies, depression (lifetime problem) IBS, neuropathy in hips

I have 4 children & 7 grandchildren.

As apples of gold in silver carvings is a word spoken at the right time for it. Prov. 25:11

Veteran Member

Date Joined Nov 2009
Total Posts : 3266
   Posted 5/20/2015 7:40 AM (GMT -6)   
There is a movement in the medical community to rename Lyme Disease MSIDS, Multi-Source Immune Deficiency Syndrome. While it is only a name this may go a long way to expanding the understanding of many conditions, including Chronic Fatigue, Fibromyalgia and Multiple Sclerosis and a host of other auto-immune diseases.

Instead of doctors relying on one test and looking for one cause and one treatment, a whole new way to approach these debilitating health conditions could be developed. I am very hopeful.
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Dancing Dawn
Regular Member

Date Joined Feb 2015
Total Posts : 87
   Posted 6/7/2015 11:39 PM (GMT -6)   
Hello Jack DG,
Thank you for this post. I was wondering if your doctor is in the U.S? Also, many
doctors use Igenex and the Western Blot to test for Lyme. I was wondering why
your doctor used these other tests, though I'm sure there are a lot available.
I have been treated for both CFS and Lyme. It is my understanding that they are
different diseases.
For me, it gets tricky because I can't tell how the symptoms differ at times. You
can for instance have brain fog with both. You can have fatigue and achy joints. And I'm told
that many Lyme tests even are not always accurate and that doctors have to treat by symptoms.
For me, I've wondered if I had chronic fatigue first and then got Lyme or the other
way around. At this point, overall I don't feel it much matters.
Good wishes to you in your treatments. I feel overall you're better off being
diagnosed with this so it can be treated. It sounds like you have an excellent doctor and
that's key. IMO.
I'm with Denise on this. I too wished there was no chronic illness at all.

Regular Member

Date Joined Feb 2015
Total Posts : 498
   Posted 6/14/2015 11:04 PM (GMT -6)   
It isn't CFS, Lyme, M.S. or even Lupus or Parkinson's---Its MULTIPLE systemic infectious disease syndrome aka M.S.I.D.'s

I've been studying/researching these chronic illnesses since 2007 due to my own 'mystery illness' that seems to have begun when I was flying back to the U.S. from SE Asia the summer of '07' when I ended up with a viral respiratory infection. However, as far back as 2004 I'd been diagnosed w/allergies,vertigo, depression, severe PMS caused migraines, and G.E.R.D.

May 2010=My 1st Igenix Lyme test revealed indeterminates/food intol test revealed MANY sensitivities therefore went gluten free, dairy free, nitrites free, msg free etc etc etc
I was treated for thyroid disorder, migraines, and G.E.R.D

June 2012 discovered by endoscope, that I DID NOT HAVE G.E.R.D.& was diagnosed w/a severe magnesium deficiency due to being on prilosec/nexium/pepcid since 1998!!! Also, a sever D deficiency...I had my gall bladder removed July 2012 and STILL had stomach pain, nausea, squeezing around middle w/shortness of breath sensation. Gall bladder removal and diet change didn't resolve stomach illness that is Episodal. For TWO YEARS my MD insisted that it's just my food intolerance, hormone imbalance, and D deficiency that caused all my symptoms that were getting worse year after year

June 2014-I started seeing an ND who believed that I was really ill and not just a psyche patient.
She ran another Lyme test which revealed 1positive **band & the rest indeterminate however she also ordered a viral & other bacterium panel which revealed positive HIGH for reactivation of the very powerfully destructive virus that's the true culprit of AIDS-however I'm HIV negative!!! My killer t-cells aka CD57 low also. Negative for Bart. But positive for Mycoplasma!

Treatment began w/U.V.B.I to drive down viral load
Herbal ABX and many supplements such as curcumin, Nac, & HM chelate for heavy metals detox which revealed HIGH toxicity.
I did 2 courses of I.V heavy metal chelation but my body doesn't detox well so had to stop.
It's been one year since U.V.B.I. & the HHV 6 is active again-Uhg!!!

The chronic illness state is one that multiplies over time. For me, it started w/my immune system being weakened by metal toxicity; so much so that when I was exposed to serious infections over time I collected them up. I stored up enough inflections that caused a childhood illness known as rosiola=HHV-6 to reactive which has resulted in an AIDS like illness.
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