Topic: People who were diagnosed Chronic Fatigue Syndrome...
Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Hi, I was misdiagnosed with CFS in 1997 after being sick for a year (got sick after a trip to SC).
I was wondering what virus' or other bacteria you have tested positive for beside Lyme?
A chiropractor muscle tested me with this new system he has that has a broad virus/bacteria thing in it. Surprisingly I tested that virus' are my main concern right now. My IgM for EBV was negative and IgG was positive in Feb.
A few months after getting sick in South Carolina, I was told I had mono, then later the CFS.
Also, I have had a lot of bladder stuff from Lyme and my bladder/rt kidney and eyes tested as my 'weak' organs. I have been having to squint more lately, things seems blurry (I'm 30, always had really good vision even with being sick for a while).
If you can tell me what you tested for and if you feel better pm'ing me, please do so. I just want to make sure I'm tested for the appropriate stuff.
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I had CFS 20 years ago. They tested for EBV & I was negative. I was able to get over it in 3 years & feel completely better. I used mostly a very good diet & the herb astragulus.
More recently, I had an EBV test & it was slightly elevated. My doctor said it was pretty normal these days to have a slightly elevated EBV. He did not suggest to do anything about it.
I had an Asyra test & mycoplasmas came up! I had 2 standard tests for that & they were negative. There are 100s of strains of mycoplasmas. I'm taking a homeopathic remedy for it & I'm getting a return of symptoms - big time.
I think the Asyra test hit the nail on the head. It's possible mycoplasmas may have been my problem 20 years ago but no one was looking into that back then.
Specific strains of mycoplasmas can effect the bladder. You may want to look into it further. From my experience, the standard tests may be inaccurate.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
I was diagnosed with CFS when I first became sick in 2004. At that time I had no testing done.
When I started seeing my LLMD he did all kinds of viral tests. These were done in Nov 2007. Some of them were EBV CMV HHV-6 Mycoplasma general Mycoplasma fermentans Chlamydia HSV-1 and HSV-2 Q fever Mycoplasma pneumonia
There are many others too. I have been in treatment for over 2 years and still suffer from chronic fatigue/low stamina/mental exhaustion every day. I am beginning to think I do actually have CFS caused by some type of virus that got me in 2004.
I have actually stopped abx for now and am having a bunch of other tests done. I only had a 41+++ and some IND. I need some time off abx to see how I will respond. I never felt better on any of the abx I took.
If you want to know all the other tests I had I will message you with the names.
Posts: 343 | From North Carolina | Registered: Oct 2008
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I also read that mycoplasmas have a cycle of 7 years. It kind of weird since I was well for about 8 years before I became ill again with what was diagnosed as Fibromyalgia, originally, & then Lyme 9 years later.
None of my tests were conclusive for anything. All of my diagnosis's were clinical.
Mycoplasmas are not viral - I'm just mentioning that there are a number of good anti-viral herbs you may want to try, kim812.
I think there's a site called Raintree with some. You may want to do a search on google.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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I will check that out..yeah I knew mycoplasma were not viral. I was just trying to list all the stuff my LLMD checked me for.
Actually none of my tests have been conclusive for anything either. I just think after 2.5 years on abx and not much better I need to do some more investigating on why I still feel like this. Thanks for the info
Posts: 343 | From North Carolina | Registered: Oct 2008
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I'm still in progress with this mycoplasma treatment but i can really feel something going on with it!
I'll keep everyone interested posted...
You may need to treat mycoplasmas & viral stuff & Lyme & toxins & many other things. It's probably the combination of things that knock out the immune system...
In my experience - you can't really trust the tests.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
sparkle, What homeopathics are you using for the mycoplasma? Are you taking it daily and at what concentration? Where did you buy it?
Posts: 648 | From northeast | Registered: Feb 2009
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I'm using Deseret Biologicals mycoplasma remedy treatment set. I think there 10 bottles that you take 3 days apart. I'm doing it a bit differently, though.
You have to get it through a practitioner.
PM me & I can recommend someone - if needed.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
I got sick in 78, later diagnosed as CFS. In the late 80s, I had high titers for EBV, and have been tested positive at least twice after that. Later, I was sick in the hospital, and tested positive for an enterovirus.
The LLMD who is treating me isn't going to try to test me for viruses and other infections. He says I do have an impaired immune system, so viruses are a problem. There are so many, and the tests won't find them all, so he feels it doesn't accomplish enough to warrant the expense. He just treats according to symptoms.
When I feel sick, and it seems viral, more than just the usual lyme symptoms, I take Wise Woman Herbals Phytobiotic caps, and Olive leaf extract, 2 caps of both twice a day. My LLMD got me started on those.
Also, I was told that my cytokine levels are high because of the immune system responding to viruses that "are incurable" (Did he mean just while I'm immunosuppressed? Next appt. will ask), and I'm on supplements to limit the cytokine production.
High cytokines can be responsible for pain, poor sleep, and hormonal disruption (possibly energy level?--bad memory). I've been taking Quercitine (3X day) and Fibroboost(2 caps 2X day) to try to calm that down. One of them interferes with production of cytokines, and the other sends a message that not as much is needed.
I do have less pain and better sleep since taking the supplements to lower cytokine levels, but my energy levels still are very low.
I am taking 2 abx,and will be adding flagyl soon, for the last 4 months of my treatment. I think I'll always be taking something herbal to keep from relapsing--probably Samento and Cumanda.
When I feel viral issues are emerging, I go back on the two I mentioned above--OLE and phytobiotics. They seem to be effective for me.
Of course, I'm also taking plenty of other supplements to support my system, besides eating very healthily. Hopefully, I'll be able to drop some of these supplements eventually!
Posts: 552 | From New Mexico, USA | Registered: May 2007
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timaca
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Member # 6911
posted
I've been tested for so many things, I would not want to list them here.
Some of the main ones to consider: HHV-6, EBV, Enterovirus and Cpn. HHV-6 should be tested at Focus Diagnostics Lab in CA. Enterovirus should be tested at ARUP in CA.
PIV-5 causes a stat-1 deficiency, which renders host unable to fend off bacterial & viral infections
Posts: 713 | From Los Angeles | Registered: Oct 2007
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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Thank you all for your help! I really appreciate it.
I've been tested for EBV (pos for IgG, neg IgM) and CMV (neg) and that's all. I am going to contact my bicom 2000 lady and ask her what virus' she will be testing me for.
I never dreamt 12 years ago that I would still be sick. Ugh... so thankful I have Lyme.net!
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(Did he mean just while I'm immunosuppressed? Next appt. will ask), and I'm on supplements to limit the cytokine production.
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