the correct view for those with FM, CFS, CFIDS

[missnanny]

I think the correct view for those with FM, CFS, CFIDS

is to look for a chemical exposure ... causing our body to go autoimmune & attack us instead of bacteria or virus.

Just because a virus is found doesn't mean it is the cause of all that ails us, especially when our immune systems are not tending to taking care of us ... but ignoring the virus & bacteria to do whatever

http://www.valdezlink.com/re/thecfidsview.htm

[missnanny]

I know of your research, and welcome you to this forum.  

I have taken an intense interest in those with CFIDS, CFS, FM because I suspect the atuoimmune causing chemical exposure to suspect is BUTYL ... it causes many, many variations ... and no two people look exactly alike which is why it has been so frustrating for medical researchers to 'pin down' the cause.

On top of that, multiple other things are incorrectly blamed for what 2-butoxyethanol does, so it gets blamed for nothing, even though the research on this chemical is done.  It causes autoimmune metabolic issues primarily and targets the blood and blood forming organs, tumors anywhere and everywhere often come along later.

I will be able to meet my US Senator, Lisa Murkowski today, and I will share with her the following:  http://www.valdezlink.com/re/oct7of2008.htm

I looked into the harm of 2-butoxyethanol when someone in my family worked on the Exxon Valdez Oil spill cleanup (one of the 1,000 young men who were biorememdiation workers) and were FOR SURE harmed by it.  In 2003 I had spoken with several of them to the point that I recognized an odd pattern of health issues that accompanied ... then someone started talking about the gulf war vets.  I looked up the short list that the American Legion put out & exclaimed, "I recognize these symptoms!"  End of that year I noticed it was on the list of solvents & pesticides the gulf war troops were exposed to.  All by itself it can cause all of the symptoms they have.  It is not only a pesticide and a solvent, it is a teratogen, a neurotoxin, as well

No more vital research should be done than to find out what happened with the Exxon Valdez Oil Spill cleanup workers, and compare them to the Gulf War Syndrome vets and then compare these to civilians with severe CFIDS, CFS, FM

I think medical science has an inaccurate view of 'the flu' ... of high white blood cell counts (for this population), etc so I continue to think outside the box and hope that the anemia will be found.  I suspect it is the number one killer in the Nation.

[Garth L Nicolson, PhD]

Response from Prof. Nicolson:  As stated in some of the posts above, chemical exposure can be one of the triggers in FMS, CFS and other chronic conditions.  In our studies, it has gone along with bacterial and viral infections, and perhaps in some patients prevented immune responses to chronic infections, resulting in more severe signs and symptoms.  Various chemicals seem to be able to do this differently in different patients, and some sort of chemical sensitivity is probably necessary.  This can also result in a condition termed Multiple Chemical Sensitivity, which is sometimes found in CFS/FMS patients.

[missnanny]

when you get around paint ... allergies get worse?  Ah Ha ... that is because you are being exposed to butyl or 2-butoxyethanol ... very common in paints

It's hard to imagine that one type of chemical could cause all that ails you, but I believe that to be the truth in this case:  CFIDS, FM, CFS, ME  Don't get hung up on which exact variation, because they all mean that doctors don't know anything else that is the matter, and the exact variations in meaning are irrelevant.  Some doctors don't even believe there is such a thing ... so there you go.

What 'triggers' autoimmune issues?  
What causes CFS, FM, CFIDS? ... a 'cold?' ... the 'flu?'
http://www.valdezlink.com/re/whattriggerscfids.htm

"My doctors still maintain that I 'probably/ contracted a viral infection that my body could not handle and therefore my immune system attacked my body."

More probably the opposite is true, when exposure to BUTYL caused the body to go autoimmune, the virus or bacteria that would otherwise be 'no problem' starts attacking your body, as the body is busy attacking you

Doctors need to realize that there is a serious flaw in medical thinking these days ... high white blood cell counts for this group of people is more times than not NOT an infection per se... but an ANEMIA sign!

Even our President's doctors don't realize this, but I hope some day soon they will

[PlateletGal]

You bet !  I am happy to hear that you've had some success with past treatments. I do hope that you continue to heal and that all of us do. I hope everyone here is excited about Nicholson joining us. I know I've had several PM's from members who are thrilled about his visit... including a lot of the people in the EBV forum. (the majority of them I think have CFS)

[Phtartist]

Thank you so much.

I am very fortunate that with the antibodies forming my fatigue lifted.  With that and my use of a dopimine reuptake inhibitor I have physical energy back.  The only problem I still have is depression which brings mental lack of energy/enthusiasm.

Thanks you for your thoroughness.

[PlateletGal]

Hi ! I've never been diagnosed with fibromyalgia. I know people have assumed that I have fibro because the majority of people posting in here do, but my diagnosis is CFS. There is a good chance that I have secondary fibromyalgia. I do sometimes have widespread pain and I know recently I saw a chiropractor for my pain and we had a great discussion about fibromyalgia and CFS. He believes fibro and CFS are autoimmune conditions.

The progress I've made on these pathogen killing treatments so far is my allergies are better, I have more energy when I take a break from the treatment protocol, my menses started again,...which indicates my adrenals are working better now, my intolerance to gluten is gone (woo hoo!) and my blood pressure is stable. I also rarely have the tachycardia now. I'm also noticing that a mole that I've had on my left foot is disappearing. To my understanding, these pathogen killing treatments are lowering my risk for cancer as well.

The mycoplasma identified in CFS and fibromyalgia is normally mycoplasma fermentans (source: http://www.rain-tree.com/myco.htm)

You can ask your questions about sub mycoplasmas to Dr. Nicholson if you'd like.

As I posted above, chemical exposures can also cause CFS and fibromyalgia, but I do not believe they are the cause for all CFS and fibromyalgia cases. 10% of patients with mono end up getting CFS. I had mono when I was a teenager and of course was tested and had a fever. I definitely didn't have a chemical exposure. Whether or not chemicals are causing our immune systems to wear down.... ? Now that is another topic certainly worth discussing. I recently posted information in my journal about air freshners, laundry detergents and how they may not be safe for you & your family members.

Best,

PlateletGal


P.S. ~ I made an error earlier (I'll blame it on the brain fog... LOL!) Dr. Nicholson is not the co-founder of The Molecular Institute for Medicine... he is the founder.

OK... I feel better now.

[Phtartist]

Question for you, You know I was tested positive for a mycoplasma M.pnumonaie. It was designated as a virus. There is no antibiotic that clears it.  I was repeatedly tested until the necessary antibodies were developed years later.  I was symptomatic until these antibodies showed up in my blood tests that were directed towards that particular mycoplasma.

Are you saying that there are a sub mycoplasma that is derived from the original M.pnumonaie, that may still be active?

I also had EBV until antibodies were found.  The fatigue has left but I am a poster child for Fibromyalgia.  
People with FM have elevated substance Pin their spine, reduced grey matter in their brains, damaged neurotransmitter function and a new finding which there is a change in the G -lymphode which is being studied as a new test for FM.

You say you had FM and now you don't, what got rid of it?  Was it the Marshall protocol?

TO  MissNanny - What is  BUTYL?  I wouldn't be surprised that a chemical could cause FM also.  Fibromyalgia to put it in simpler terms is a neurological illness.  It affects the muscles (neuromuscular) and causes pain all over the body.  Anything that causes damage to the nerve centers, I think, can cause fibromyalgia.  That is just my thought.

Thank you for your input

[missnanny]

What is missing is putting the BUTYL on the list of causation

Until that is considered, everything else is getting the blame that it should get

2-butoxyethanol all by itself can cause the 'syndromes' of CFIDS, CFS,FM and 'gulf war vets' syndrome, and the Vietnam Vets' syndrome (the propellant with Dioxin & a lot of other things, too.

Sorry, all, until the primary chemical to suspect is included on the list, my pet peave is that everything else is blamed and it gets blamed for nothing.  Then the wrong people are sued for aesbestos, for smoking, etc, etc ... It is wrong

Not only that, what is thought to be a sign of infection or lymphoma (high white blood cell counts) for this population will generally be a fatigue or anemia sign.

So lots of things are very mixed up.  That's why doctors (per definition of CFIDS) do not find the fatigue.

I'm asking the family of Susan Butcher what her 'odd symptoms' were ... to see if the leukemia she came down with would be attributable to Butyl Exposure also

http://www.valdezlink.com/pages/susanbutcher.htm#who

Avoid BUTYL.  Avoid 2-butoxyethanol
http://www.valdezlink.com/re/avoidpesticides.htm

[PlateletGal]

**** Special Notice ****

Dr. Garth Nicholson, co-founder of The Institute for Molecular Medicine will be our guest here in the fibro / CFS forum on Monday, October 6th (10:00 AM Pacific Time). Either MedHelp or myself will make the formal announcement probably tomorrow. In the meantime, you may want to check out Dr. Nicholson's website and/or think of questions for him.

[PlateletGal]

Hi Bec,

Welcome to the fibro / CFS forum !! I'm sorry to hear that you are another victim of these very real "syndromes". I don't have any thoughts on Lyrica because I don't have fibromyalgia (at least not primary fibromyalgia) and haven't taken it before. I hope that other members here will chime in or you can look back at previous post. In addition, I have posted various treatment recommendations for both fibromyalgia and CFS... recommended by physicians who routinely diagnose and treat these conditions. These physicians also keep up-to-date on the latest research for both fibro and CFS. Here's the link if you are interested :

http://www.medhelp.org/health_pages/list?cid=39  ;(Fibro / CFS Health Pages)

[patsy10]

Chemical exposure is a possibility but my school of thought is viral or bacterial or both.  A large number of people afflicted with these illnesses have or have had infectious symptoms ongoing or as a trigger.

[Bec16]

Thank you for posting comments on triggers for FMS/CFIDS.  It will be one year at the end of Oct. that I have had severe body aches and fatigue.  The fatigue is much better.  My doctors still maintain that I "probably"  contracted a viral infection that my body could not handle and therefore my immune system attacked my body.  Many horrible symptoms have improved but the pain remains daily.  I am a physical therapist and have been off work since May.  I am only 33 yo and I am trying to take a holistic and Western medicine approach combined.  I do take Hydocodone and I am chosing not to take Lyrica at this time.  The pain med. is very controlled by one physician.  I write down each pill that I take along with the time and rate my pain.  I see my doctor every 2 weeks and he looks at my log.  I go to accupuncture 2 times a week with slow results but it is helping.  I take many vitamin supplements and herbs all approved by my doctors.  Any thoughts on Lyrica?  I am trying to prepare my body for beginning a family in the next year or so and I am concerned that Lyrica has only been out for one year.  I don't want to enter into a Vioxx situation.  I want to help my body heal on its own.  Any thoughts anyone?
Bec16

[PlateletGal]

In my case, EBV was the trigger... but I did eventually notice years later that I had some chemical sensitivities. If I was around paint, I would have trouble breathing and my legs would go weak.

Regardless... I think we need to focus also on the fact that the majority of CFS & fibro patients were have found to have high frequencies of mycoplasmas in their blood. To my understanding mycoplasmas aren't a virus or bacteria --- but they originate from bacteria. In my case... mycoplasma infection is what is making me so ill. The EBV was the trigger that set it off.

[PlateletGal]

Hi missnanny,

Thank you for posting this here.... it is an important discussion.

IMO....a chemical exposure can definitely cause either one of these syndromes. However... viruses can be the trigger as well.

Here's what Dr. Mark Shaw says on this :

Recent research points toward a variety of triggers prevalent in these conditions.

1/ a chronic bacterial infection which has overrun your immune systems ability to cope.

You can be infected through a variety of mediums. The Sympathetic and Parasympathetic nervous systems are compromised and damaged. The condition is then maintained and exacerbated by musculoskeletal imbalance in the thoracic region causing irritation of the surrounding nerve ganglia.

2/ a viral/ chemical exposure which entered your system causing brain and spinal cord lesions, simultaneously leaving the Sympathetic and Parasympathetic nervous systems in a state of chaos. The condition is then maintained and exacerbated by musculoskeletal imbalance in the thoracic region causing irritation of the surrounding nerve ganglia.

3/ a viral/ chemical exposure which entered your system causing a temporary brain injury to the area of the brain that deals with immune response.

Types 1 and 2 will cause the most prolonged type of Fibromyalgia/CFS, with 3 being mostly related to the type of post viral illness PVFS caused by EBV, in otherwise healthy patients this will usually dissipate over a period of 6 months to a year and should not necessarily result in or be classified as Fibromyalgia/CFS.

source: http://www.disabled-world.com/artman/publish/cfs.shtml


And information on CFS following a toxic exposure:


1: Sci Total Environ. 2001 Apr 10;270(1-3):27-31. Links
Chronic fatigue syndrome following a toxic exposure. Racciatti D, Vecchiet J,
Ceccomancini A, Ricci F, Pizzigallo E.Department of Infectious Diseases, G.
D'Annunzio University, Chieti Scalo, Italy.

source: http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0709C&L=co-cure&P=R2596

______________________________________________________________________

Q & A Session with Dr. David Bell :


Q: Have you seen evidence in some patients that CFS can be caused by exposure to things such as mold, or other environmental toxins?


Dr. Bell: Yes, mold and environmental toxins can definitely cause or initiate ME/CFS. Somehow toxins affect the cytokines in a way similar to the classic mononucleosis infection to set off the illness



link:

http://www.immunesupport.com/library/showarticle.cfm?id=8474&T=CFIDS_FM&B1=EM110707F