The FDA and NIH have confirmed what the Whittemore-Peterson Institute discovered about XMRV. Allegedly, a paper will be forthcoming ... and until then, everyone is waiting with bated breath.
From what I've read, the symptoms of Chronic Fatigue Immune Dysfunction and Lyme overlap so that it's hard to tell which is which; however, with Lyme pain is more predominant, and with CFIDS, flu-like symptoms are more predominant.
Ictheobald, Lyme seems to run co-currently with CFIDS. Many people with CFIDS also test positive for Lyme. Many also test positive for mycoplasma infection and have high viral titers of a lot of different viruses.
I believe CFIDS is my main diagnosis, based on symptoms and history. But, I also tested positive for Bb.
I'll treat the Bb for a few months, and I expect to notice improvement or resolution in symptoms related to that. For the CFIDS/Fibromyalgia I intend to use natural anti-virals such as Olive Leaf until more information becomes available.
This is the lab that is doing the testing for XMRV in the US. (There's another lab in Belgium doing the testing for European patients).
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
People with Morgellon's Disease also test positive for Lyme. I thought that pain was more prevalent with Fibromyalgia & fatigue with CFS... I'm not sure where Lyme fits into the picture.
Then, there are the co-infections... The co-infections seem alot worse then Lyme to me. I don't know why they are relegated as an afterthought of Bb.
Not to mention viruses, etc.
I recently heard something about Autism. It's kind of out there but this lady had some information that she channeled through a psychic & wrote a book about it.
She said that Autism increased due to an accidental release of a bio-warfare dust from a military facility in NV. This dust in combination with a particular vaccine is the cause of Autism. The dust is supposedly a form of anthrax & the wind currents carried it throughout the country. Also, alot of food is grown in areas where the dust spread.
Who knows...? There are many strange things out there. I'm sure we don't even know the 1/2 of it. I had been hearing for years before I even thought about Lyme that Plum Island was not safe & that organisms/whatever could get out through the ventilation system.
There are top secret facilities in UK & Canada that I've read about, too. Since there isn't a really accurate way to tell what we have - it's all just a guessing game.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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quote:Originally posted by sparkle7: The co-infections seem alot worse then Lyme to me. I don't know why they are relegated as an afterthought of Bb.
I COMPLETELY agree, because the coinfections reproduce quicker and cause more immenent damage to our bodies! Luckily that also means they respond quicker to treatment, as long as you're on something that targets the right infection (and even then, what works for one doesn't work for another).
Unless something makes you worse with NO improvement at the end, you owe it to yourself to try all avenues, if it's possible.
Posts: 161 | From Southern United States | Registered: Sep 2009
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posted
Ictheobald- I started with a flu also and everything came after that.
I never thought I had the typical Lyme symptoms in that I had very little pain of any type. That is why I was always skeptical about my diagnosis. Although I also never had anything close to a positive test with anything..
I don't think I will ever know what happened to me..I can say the doctors have tested for everything in the past 6 years but I am still fighting the horrendous fatigue daily.
I can say that stress makes the tiredness worse and it is more of a physical draining fatigue than a lay down and sleep fatigue. Resting or sleeping doesn't help much...
I treated for 3 years and maybe this is what I am left with.
Posts: 343 | From North Carolina | Registered: Oct 2008
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Most people who have had untreated lyme for any length of time have a soup of infections, some can be tested for, many cannot because they are unknown or they are known but no tests have been developed yet.
My tests for babesia and bart were negative and yet I developed the long purple/red bart streaks once I started treating with doxy and some of my best improvement was seen with babesia treatment. There are known strains of both of those that have no tests yet and there are no doubt lots of strains that have not been discovered yet.
In addition to infections, some very real issues that can cause overlapping symptoms with Lyme/CFS/Fibro or whatever you want to call it can keep you sick.
Some of these issues are mold exposure (can be hidden behind walls), genetic issues such as KPU, Methylation cycle problems, inability to get rid of biotoxins, heavy metals, parasites, damage from lyme that needs to be addressed such as hormonal, quinolinic acid, heavy metal release from dying organisms, cellular debri, biotoxin debri for those with the genetic problems etc. etc...
As others have said, start treating and go from there. As sparkle said, it's like peeling an onion. If you have lyme and you are having symptoms, you MUST treat otherwise you risk becoming very ill, even bedridden as many of us can tell you from personal experience.
Best to peel that onion now rather than sometime down the road when you are sicker.
Stick around here. Learn all that you can. It is well worth it.
kim812 - keep peeling the onion. You will figure it out. Find a doctor who is open minded, knowledgable and who is willing to help you. If you don't already, then please take the threat of serious illness from mold, heavy metals, parasites etc. seriously. Don't underestimate them.
Those like me who have genetic issues that make detoxification very difficult will likely not get well until they use appropriate methods to get rid of their body burden of toxins. This requires specific protocols that target their problems.
Terry I'm not a doctor
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
Terry- I can honestly say I had a doctor who was willing to try everything to get me well. He worked with me for 3 years. I had so many tests...I mean ones I had never heard of.
I was treated for heavy metals through Dr. H even though they said the metal levels were borderline.
I was tested for parasites, mold, virus's, etc..all of it and nothing ever showed up. I sent away so many samples it was mind boggling.
I just really got to the point where I needed a break from abx and to just let my body alone for a while. I am not even sure my chronic fatigue is something that can be relieved. I have no other symptoms except my left calf (twitching and pain). Those were my first two symptoms and remain today 6 years later...all the others came and went.
It has been a year now since I stopped all treatments. I am doing okay...I don't think I will ever feel like I did prior to november 2004. The fatigue is constant and definately has a huge impact on my life but I can live with it.
Maybe in the future I will persue this further but as of now I am just going to do the best I can.
I just got out the last testing I had (April 2009) for parasites and molds and they were both undetectable. I would assume it was a valid test using a stool sample.
Thanks...
Posts: 343 | From North Carolina | Registered: Oct 2008
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massman
Unregistered
posted
Stool testing, especially for parasites, is very unreliable. How many samples did you send in for one test ?
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ukcarry
Frequent Contributor (1K+ posts)
Member # 18147
posted
I agree with Dan: you won't know whether the fatigue will go away with Lyme treatment until you try.
At the same time, there are plenty of people with Lyme who do not have significant fatigue, so I don't think CFS symptoms are NECESSARILY all Lyme.
Over a year's worth of rotating abx has not improved anything [except possibly my thyroid] for me, but many people have a different experience: it's not black and white,in my view and we all have different cocktails of bacteria, viruses, not to mention the genetic influence.
There is also the difficult decision of how long to stay on abx if you're not seeing improvements, as some people only improve after several years.
XMRV may well turn out to be why some people's fatigue symptoms do not go away with treatment for Lyme.
Posts: 1647 | From UK | Registered: Nov 2008
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posted
I actually did two seperate tests. My gastro doc had me do one and then 2 years later my doctor here in NH had me do another one at a different lab. I believe I sent in two containers because they wanted the samples 2 different days...
What would be the best test for parasites?
Posts: 343 | From North Carolina | Registered: Oct 2008
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