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Post by Admin on Mar 2, 2012 9:57:53 GMT -5
What is the difference between Fibromyalgia and Morgellons; anyone know exactly? Or hopefully this post will be built upon and we may discover.
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brim
Junior Member
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Post by brim on Mar 3, 2012 5:46:02 GMT -5
Wikipedia definition of Fibromyalgia: en.wikipedia.org/wiki/Fibromyalgia Fibromyalgia is an example of a diagnosis of exclusion, which means that there is no bood test or other concrete way of diagnosing this, other than by examining the symptoms. A lot of the symptoms are overlapping with Morgellons, but that also goes for other "label illnesses" that are based on diagnoses of exclusion, for example ME. There are also overlapping symtoms with diagnoses that are based on concrete microbiological findings, such as Borreliosis/Lymes and systemic candidiasis. Personally I think the body will produce similar symptoms to all microbioligical or chemical disturbances or imbalances, such as fatigue, brain fog, pains, etc. Like - on a smaller scale - coughing and chest pain are localised bodily reactions to something irritating the lungs, whether the problem is microbial or chemical. Working to get Morgellons established amongst other "label illnesses" will not get us any further, in my view - other than getting recognition for the fact that we are suffering from "something", which of course might help vis a vis insurance companies and such. Brim
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Post by Admin on Mar 3, 2012 15:21:16 GMT -5
the benefits of not being labeled mental would be that folks would not have drugs pushed on them that can damage their heart.
Many as you already know brim often become distanced from family for the families protection and also because it is difficult to speak of something so much of the medical community disregards.
We know eventually it will be seen for what it is but in the meantime the damage to so many is heart breaking. Just like AIDS; doctors saying it was in patients heads as they withered away and died.
Then comes the apologetic oops we were wrong---
Thank You for posting this information Brim.
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Post by sarahconnor on Mar 4, 2012 0:21:32 GMT -5
Wikipedia definition of Fibromyalgia: en.wikipedia.org/wiki/Fibromyalgia Fibromyalgia is an example of a diagnosis of exclusion, which means that there is no bood test or other concrete way of diagnosing this, other than by examining the symptoms. A lot of the symptoms are overlapping with Morgellons, but that also goes for other "label illnesses" that are based on diagnoses of exclusion, for example ME. There are also overlapping symtoms with diagnoses that are based on concrete microbiological findings, such as Borreliosis/Lymes and systemic candidiasis. Personally I think the body will produce similar symptoms to all microbioligical or chemical disturbances or imbalances, such as fatigue, brain fog, pains, etc. Like - on a smaller scale - coughing and chest pain are localised bodily reactions to something irritating the lungs, whether the problem is microbial or chemical. Working to get Morgellons established amongst other "label illnesses" will not get us any further, in my view - other than getting recognition for the fact that we are suffering from "something", which of course might help vis a vis insurance companies and such. Brim Hi Brim, Thank you for bringing this up. I've been diagnosed with this condition and for me Fibromyalgia and Morgellons are one or the same. Fibromyalgia is a name given to a bunch of symptoms ie. pain, fatigue, poor sleep, brain fog, memory less etc. Similar to Morgellons - a name given to a bunch of symptoms. I was never given treatment for this syndrome because no doctor ever committed themselves to explaining what Fibro actually was. One Rheumatologist told me in 1996 that the cause seemed to be due to people who couldn't say "no" or had been sexually abused as a child. They did know that this condition interfered with REM sleep but they didn't know why. ** This Rheumatologists analogy is barking up the "all in the head" scenario. Having the diagnosis of Fibromyalgia seemed in some way to work against me, probably the precursor diagnosis before all the mental illness labels are made. The Government know what causes 99% of diseases. How do I know this? Well I don't, but that's my gut feel. I may have this dang disease, but I ain't stupid.
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brim
Junior Member
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Post by brim on Mar 5, 2012 8:52:27 GMT -5
Well said, Sarah Fibromyalgia isn't considered to be a "real" medical condition in my country either. So here, like in your case, one is better off avoiding getting Morgellons mixed up with Fibro. Different story with ME (Myalgic Encefalomyelitis - chronic fatigue syndrome) though, which "they" now think is a post-viral reaction. Not complete certainty about the "viral" part, but at least there is consensus inthe medical community that ME is triggered by an infection of microbial character. Recently one of our most reputed cancer hospitals stumbled onto the following discovery: A medication called Rituximab (cancer medication), seems to help 2/3 of the ME patients tested so far. And if something helps, this at least contributes to substantiate that the condition is of physical and not mental origin in the first place. Brim
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Post by Admin on Mar 5, 2012 21:53:25 GMT -5
It is odd that they do have a pharmaceutical drug for the nerve pain called Lyrica and mention the (non) condition fibromyalgia. www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000327/I've been using naturals so have stayed away from most pharmaceuticals. It is interesting that they do have a test for the chronic fatigue because I'm sure I would come up with a positive for that. Thank You both for the info---
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brim
Junior Member
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Post by brim on Mar 6, 2012 6:50:22 GMT -5
Hi "Admin", Looks like a form of painkiller, the Preglabin, i.e. a symptom reliever? The mentioned Retuximab seems to provide a cure. I agree with the ME-view, to the extent that I am pretty convinced there is a microbial factor (or constellation of microbial factors) behind Morgellons. I will boldly list my immunoglobin/antigen test results for your information: Borrelia total = Positive Chlamydia Pneumoniae = Positive Epstein Barr Virus = Positive Bordetella Pertussis = Positive Mycoplasma Pneumoniaie = Positive Varicella Zoster = Positive Which is in part corresponds to a typical Lyme "co-infection package". Perhaps ME has a similar package behind it. I, at least, am pretty convinced that Morgellons is connected to spirochetes somehow. This is based on the general symptom list of Morgellons (thus not including the symptoms of insects, larvae and shiny hexagons coming out of your skin), as well as the link that may have been established with this hoof disease in livestock, which also has a spirochete (and a skin manifesting and fiber producing one at that) behind it. As spirochetes invade cells, they may also be likely to invade the cells of other microbes, and keep them alive for parasitic or symbiotic purposes. Spirochetes are also great mimics and they have different forms, inter alia cysts. (See Carnicom's findings, on the "chlamydia like" organism.) There are some different varieties of spirochetes out there, and it may just be so that the Borrelia test, also turns positive for other spirochetes. (Just I disagreeumption.) Here is a link to some more info on Lymes: www.springboard4health.com/notebook/health_lyme_disease.html Of specific interest to me is the chapter on transmission, which I have snipped: Methods of Lyme Disease Transmission W.T. Harvey, M.D., M.S., M.P.H., and Patricia Salvato, M.D., of Diversified Medical Practices in Houston, Texas, were puzzled by the high number of patients testing positive for Lyme disease. Many of these patients presented with "established" criteria for Lyme disease, but others did not. The fact that southeastern Texas is a 'non-endemic' region, and that many of the patients had no history of erythema migrans rash, led the doctors to question established methods for Lyme disease consideration. Careful reflection of published research lead them to conclude the following. First, the arthropod is not the exclusive vector of Lyme disease. In addition to ticks, Bb may be carried and transmitted by fleas, mosquitos, and mites. Second, Lyme disease is not exclusively vector-borne. Compelling evidence supports horizontal (sexual) and vertical (congenital) human-to-human transfer. Other front-line physicians are arriving at the same conclusions. "Of the more than 5,000 children I've treated, 240 have been born with the disease ," says Charles Ray Jones, M.D. Dr. Jones, who is the world's leading pediatric specialist on Lyme disease, says that about 90% of his practice is comprised of patients with the disease. He also states, "Twelve children who've been breast-fed have subsequently developed Lyme.” University of Wisconsin researchers state that dairy cattle and other food animals can be infected with B. burgdorferi and hence some raw foods of animal origin might be contaminated with the pathogen. Recent findings indicate that the pathogen may be transmitted orally to laboratory animals, without an arthropod vector. Thus, the possibility exists that Lyme disease can be a food infection. Citing limitations of laboratory tests for the detection of antibodies to Bb, a study was conducted in 1995 at the University of Vienna (Austria) for its detection. Utilizing polymerase chain reaction testing for DNA, Bb was found to be present in both the urine and breast milk of patients previously diagnosed with Lyme disease. A study conducted at the Sacramento (California) Medical Foundation Blood Center in 1989 concluded that there is evidence that the transmission of Bb is possible by blood transfusion . Furthermore, in 1990, a study by the Centers for Disease Control (CDC) in Atlanta, Georgia stated that the data demonstrates that Bb can survive the blood processing procedures normally applied to transfused blood in the USA. The way I see it, it should not be a surprise to anyone that one type of spirochete behaves and transmits exactly like another type of spirochete, namely the Treponema Pallidum, causing syphilis - and also that the different types will cause symptoms that are similar (also neurological, as they penetrate the blood/brain barrier), although in different degrees and with slight variations. The problem is to extract/detect the spirochetes in the first place, as well as finding out how to cultivate them in vitro in the second place. A very costly process indeed. Besides: The content of the snip above, should it be correct, is probably knowledge for the strong hearted only... Brim
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Post by Admin on Mar 6, 2012 20:48:30 GMT -5
Thank you for the info and you're right it is spooky; but what many have been saying about the food supply and water.
It is tainted and it is making folks ill.
Thank You--
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Post by sarahconnor on Mar 7, 2012 16:16:22 GMT -5
Hi guys,
Just wanted to let you know I saw Dr Peter Mayne last Wednesday. I had to fly to NSW for the appointment.
Dr Mayne clinically diagnosed Lyme and Bartonella. I am waiting on my bloods from Igenex, could be another 4 weeks to wait.
My CD57 result came back yesterday and my count is 70.
THE CD-57 TEST Our ability to measure CD-57 counts represents a breakthrough in LB diagnosis and treatment. Chronic LB infections are known to suppress the immune system and can decrease the quantity of the CD-57 subset of the natural killer cells. As in HIV infection, where abnormally low T-cell counts are routinely used as a marker of how active that infection is, in LB we can use the degree of decrease of the CD-57 count to indicate how active the Lyme infection is and whether, after treatment ends, a relapse is likely to occur. It can even be used as a simple, inexpensive screening test, because at this point we believe that only Borrelia will depress the CD-57. Thus, a sick patient with a high CD-57 is probably ill with something other than Lyme, such as a co-infection.
When this test is run by LabCorp (the currently preferred lab, as published studies were based on their assays), we want our Lyme patients to measure above 60; a normal count is above 200. There generally is some degree of fluctuation of this count over time, and the number does not progressively increase as treatment proceeds. Instead, it remains low until the LB infection is controlled, and then it will jump. If the CD-57 count is not in the normal range when a course of antibiotics is ended, then a relapse will almost certainly occur.
Dr Mayne said he can not commence treatment until all my blood results are back.
I can honestly say I feel very alone again and the awful symptoms are not going away.
Perhaps I should be concentrating on my bucket list. Australia is like a third world country when it comes to our health care. I could be given some sort of treatment, but I doubt it will knock this thing out.
Thinking of you all and sending my love.
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Post by Admin on Mar 7, 2012 18:25:05 GMT -5
Thank You both so much for discussing the tests you've had as I'm sure this is exactly what I'm going to need to do for self soon.
As much as I've done in other areas of this condition; in this aspect; I'm on the lower rung of knowledge so THANK YOU!
Many Blessings, CrystalRiver
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brim
Junior Member
Posts: 83
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Post by brim on Mar 15, 2012 8:07:20 GMT -5
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Post by Admin on Mar 15, 2012 20:57:30 GMT -5
It would be nice to be able to take a 'real' test that showed really what was going on.
I do hope this proves out well--Would Be Wonderful!
I know the western blot had issues and they were saying if you received one negative test you couldn't take it again--strange stuff. Did you hear anything like this Brim?
CR
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brim
Junior Member
Posts: 83
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Post by brim on Mar 16, 2012 5:00:27 GMT -5
Don't quite understand. A "western blot" is perfomed on your blood outside your body, so why should you not be able to be tested again? Problem is that none of the "standard" tests give thrustworthy results when it comes to spirochetes. And doctor's generally are illiterate on Lymes, so when you have been tested once and nothing is found, they think the job is done. Most Lyme sufferers have tested negative several times, but then suddenly test positive. This is probably a timing question, as spirochetes have different forms and can lie dormant, and it is only when they are in the active, spriochetal form, that they may be detected. My tests were sendt to a specialist hospital in my contry and also to Germany. These were antigen/immunology tests, but even these can fail. Antigen/immunology tests can also be positive long after an infection has been cured as the body remebers, respectively keeps you immunised against getting reinfected for some time, even years. Such tests can therefore not necessarily determine if an ifection is gone or still active, but the fact that you present with symptoms typical for the infectious agent that the antigen/immunology test is positive for, will of course be the decisive factor. The CD-57 that Sarah had done, is an indicator test, measuring the quantity of a specific protein, and if the count is under a certain level, this is a (strong) indicator that you have Borreliosis. In my case, as I have mentioned on this site before, I can detect a cycle in this of approx. 3-4 weeks - some symptoms suddenly subside (crawlies/tingling) for a couple of days - what a releif !! - but then others get stronger (lesions, skin/callus production, fibers, brain fog, dull head aches, sleep disturbances, depression, fluctuating body temperature, agitation and mood swings) and it lasts for a week or so. I call it flare ups. It might be that one should be tested during a flare up. As I tested positive on first trial, I may just have happened to be in the middle of a flare up when the test was done a year and a half ago, but I can't say for sure at this point. The test results may, I guess, also depend on the genereal load of spirochetes, which may vary from person to person. Here is a link for more info: www.lymediseaseresource.com/Burrascano.htmlDr. Burrascano seems to be a capacity on your side of the globe, and this article gives plenty information and material for extended searching. Brim
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Post by Admin on Mar 16, 2012 6:52:20 GMT -5
It was standard (is or was) procedure that once a negative was obtained there was no more tests; most likely insurance companies not wanting to pay. (my guess)
Thank you for the doctors name and the info---I had a rash at one point but never a bulls eye and so disregarded lyme.
At present i am in cycle but am healing as well as the water I'm using at present is much better. Had some electrical weirdness but haven't had that in years so did grab my attention.
Chronic Fatigue is something I seem to deal with almost constant even when everything else is balancing out.
CR
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Post by sarahconnor on Mar 25, 2012 2:03:52 GMT -5
Hi Brim,
You sound very well versed on such a lot, thank you for your post. I can't and I refuse to get my head around the Lyme tests, no need for things to be complicated.
I haven't had my results from Igenex yet. I am a little concerned as my bloods were sent to Igenex almost 4 weeks ago and they haven't debited any money from our bank account. I will contact Dr Mayne's surgery tomorrow to check they did post my blood.
How does one lift those killer cells? My count apparently means a Borellia infection and according to Dr Burrascano the count will not normalise until the infection is knocked out.
I have this morbid fear my Lyme results will not be favourable to back up a clinical diagnosis of Lyme.
Makes me wonder why the controversy with the Lyme tests. What are they scared of syphilis?
All I want is some evidence of what I have to give me something to work with. That is my right as a human being. My life has and still is on hold, until I know what lies ahead.
This disease is going to kill me and I would like to know how much time I have left.
sarah
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brim
Junior Member
Posts: 83
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Post by brim on Mar 25, 2012 10:36:31 GMT -5
Good lord, Sarah! Don't panic. Start working intelligently on building your natural immune defenses.
And your doctor, based on the results that are already at hand, should have started you on antibiotics already. Press Dr. Mayne for plans and suggestions when you call to follow up the Igenex situation, and demand that he communicates his thoughts, knowledge and diagnosis to your regular GP!
"This" is not going to kill you, whether it turns out to be Lymes or not, and do NOT go suicidal on me.
Brim
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Post by sarahconnor on Mar 25, 2012 16:44:37 GMT -5
Good lord, Sarah! Don't panic. Start working intelligently on building your natural immune defenses. And your doctor, based on the results that are already at hand, should have started you on antibiotics already. Press Dr. Mayne for plans and suggestions when you call to follow up the Igenex situation, and demand that he communicates his thoughts, knowledge and diagnosis to your regular GP! "This" is not going to kill you, whether it turns out to be Lymes or not, and do NOT go suicidal on me. Brim Hi Brim, Panic is normal and one should not have to put on a brave face for suffering. How do you know this disease is not going to kill me? Sorry, but you can not say that because you do not know. I am not suicidal, at least not today. I was in January when I flipped out and posted a million song links. I wasn't aware at the time I was suicidal and crying out for help. Dr Mayne is at the Morgellons Conference as we speak. I will not be speaking to him over the phone because a refuse to pay $40 for a 5 minute consultation. I paid $400 to see him and in return I have a big fat nothing. Work intelligently on building my immune system. Well, again I paid a lot of money, actually I spent $1200 in a day - that included cab fares, air fares, hire car and consultation. As a human being I am entitled to help and support from a medical doctor. Throwing a bunch of over priced supplements at myself could do more bad than good. Why do I say this? ie. if one does not take Vitamin C with other supplements one is wasting their time. The supplements on the supermarket shelves are rubbish. Maybe contacting somewhere like the Australian Institute of Sport for supplements because they don't give their athletes rubbish. Unfortunately we the people are not entitled to these sorts of supplements. My case is different to yours. I have been told for over 8 years I am delusional and I have been locked away on 3 occasions and had my child removed. Is it any wonder I am pissed off? This is not about winning the battle of a disease - false faces! I am entitled to feel down because I am unwell and NO ONE has given a d**n. My life has been destroyed and I will make it my mission to screw each and every person to the floor who has wronged me. sarah
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brim
Junior Member
Posts: 83
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Post by brim on Mar 26, 2012 15:31:22 GMT -5
I'm sorry. Didn't mean to be patronising, nor should I pretend to understand your situation.
Brim
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Post by sarahconnor on Mar 26, 2012 16:53:51 GMT -5
I'm sorry. Didn't mean to be patronising, nor should I pretend to understand your situation. Brim Hey, I know you didn't, thanks. I just phoned Igenex - wait for it - no record of my name, nothing. I'll be tearing someone a new "a" hole today. Sorry for my bluntness. Will let you know in due course. sarah
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Post by sarahconnor on Mar 28, 2012 2:31:10 GMT -5
I'm sorry. Didn't mean to be patronising, nor should I pretend to understand your situation. Brim Hey, I know you didn't, thanks. I just phoned Igenex - wait for it - no record of my name, nothing. I'll be tearing someone a new "a" hole today. Sorry for my bluntness. Will let you know in due course. sarah The entire thing is a mess. My blood was forgotten and has been sitting in the fridge at the doctors surgery since 29th February. My blood is now in transit to Igenex and will be worthless in 2 days from now. Igenex said they will not touch blood if it is 30 days old. We are dealing with an extremely clever bacteria - Borrelia - and one of the hardest bacteria's to find in human blood. The doctor should know this. Again, complete incompetence and negligence. sarah
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Post by sarahconnor on Mar 29, 2012 20:08:21 GMT -5
Hey, I know you didn't, thanks. I just phoned Igenex - wait for it - no record of my name, nothing. I'll be tearing someone a new "a" hole today. Sorry for my bluntness. Will let you know in due course. sarah The entire thing is a mess. My blood was forgotten and has been sitting in the fridge at the doctors surgery since 29th February. My blood is now in transit to Igenex and will be worthless in 2 days from now. Igenex said they will not touch blood if it is 30 days old. We are dealing with an extremely clever bacteria - Borrelia - and one of the hardest bacteria's to find in human blood. The doctor should know this. Again, complete incompetence and negligence. sarah There aren't many positive things about having Morgellons, though I have learnt much! Everything is A OK now! - I am a good communicator and thankfully my doc has shown he is a good listener and understands. My blood has reached Igenex - yippee - and it shouldn't be spoilt because it was frozen - (maybe that's the closet I will ever get to cryogenics... ;D lol) - sorry that's me being silly. All this worry is not good, but all ok now. sarah
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Post by sarahconnor on Apr 9, 2012 23:16:52 GMT -5
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