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Has anyone heard of Morgellons Disease?


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Old 11-24-2009, 05:38 AM   #1
bughater
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Has anyone heard of Morgellons Disease?

Hi all,
I am new to this website/msg board. I was surprised that i haven't been able to find any messages regarding "Morgellons Disease". It is my nightmare.
I have itching, crawling, biting sensations all over, mostly on my head, back arms, underarms, but have had them in all parts of my body at one time or another. My head is the worse for me. My hair isn't my hair anymore.
I have been able to get some relief by using organic soaps, and shampoos.
Also i now take vitamins and supplements daily ( when i forget or go a couple of days without my symptoms get worse.)
I don't have any insurance and trying to find a medical doctor who will even believe me ( re: morgellons) is impossible. But i am desperate in finding a clinic or dr or whatever to get a perscription that they have given to other morgellon suffers with good results. As i understand, there is no known cure for this horrible infliction.
So i am looking for any info, person, suggestions, meds, anything in regards to my situation.

 
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Old 11-24-2009, 07:20 AM   #2
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Re: Has anyone heard of Morgellons Disease?

Hi there, I have heard of Morgellons disease. The problem with Morgellons disease is that the treatment of the disease is a drug which happens to also be used to treat people with schizophrenia which often turns people off. People think when the doctor is prescribing the antipsychotic drug it means the doctor thinks the patient is crazy--this is FAR from the truth because people with Morgellons are definitely not crazy.

For reasons we don't know, people who are afflicted with the sensation of formication (i.e. creepy crawly sensations all over the body) usually had some type of trigger at the beginning such as a fever or some type of illness. Afterwards, even though the trigger is gone, the body's response to the stimulus continues to go on unchecked leading to months and months (sometimes years) of paresthesias which can be in the form of burning, tingling, crawling and people sometimes even think they have threads coming out of their skin.

When a person is worked up for Morgellons, blood tests are done at first to make sure there is no underlying organic pathology. This includes ruling out other things which can cause paresthesias such as thyroid problems and electrolyte imbalances. Additionally, formication can sometimes be a symptom in the premenopausal period so some women are tried on estrogen supplementation with fairly good results. If no organic pathology is found, an antipsychotic can be tried. Again, this is not because the patient is crazy, but because these drugs were, by chance, seen to help other patients with their paresthesias, so they were tried in NON-schizophrenic people and it worked! Remember there are a lot of drugs which can be used for multiple purposes. People who have terrible pain after shingles are often started on gabapentin (an antiseizure medication) or amitryptiline (an old antidepressant, albeit in a much lower dose).

One thing I will point out is that a lot of family doctors probably haven't heard of this condition. You have to see someone who specializes in it including a dermatologist or in some places even tropical medicine experts. Good luck!

 
Old 11-25-2009, 03:18 PM   #3
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Re: Has anyone heard of Morgellons Disease?

Hi Harka,
Thanks for your message. I have been with my boyfriend to 3 dermatologists, an "urgent care " facility and another medical center (for low income).
Well i guess i will just continue doing my research on the internet and other contacts hope to get hooked up some way with any more info or leads to a dr of some type who can help, any info or help in any way would be so greatly appreciated.
Today has been a bad morgellons day for me, feeling extremely uncomfortable in my skin and hair today. Need to go take a nice bath in tea tree oil and camomile body wash. It really does help calm the skin and hair.
Take care all,
bughater

 
Old 11-25-2009, 04:24 PM   #4
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Re: Has anyone heard of Morgellons Disease?

bughater, you never commented on what you thought about the medications I mentioned. Those really will help your symptoms!

 
Old 11-30-2009, 09:14 AM   #5
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Re: Has anyone heard of Morgellons Disease?

harka -

I must correct you on a few points. The first of these is that there is now enough research and evidence to demonstrate that this is, in fact, a very real and distinct affliction. The "thinking they have fibers" comment is ill-informed. The fibers are very clearly evident under magnification of between 100-200X, and are often seen within unbroken skin. They have been analyzed by Dr. Wymore from OSU in conjunction with the Tulsa Crime Lab, utilizing the FBI database of all known textile fibers (900) and their elemental analysis does not match any (90,000) known substances, nor do the fibers.
Regardless of any other information regarding this condition, this alone PROVES that this is a novel and widespread affliction (it is global).
Psychiatric meds typically do NOT help, even those that target formication. The methods that seem the most helpful are detoxification (as with FarInfrared, chelation, etc), hyperbaric treatments, and a variety of other natural interventions.
The Center for Disease Control has been studying this condition for two years and are expected to make an announcement anytime about their finding.
There are many doctors and treatment centers that treat this condition, too numerous to mention here. The worst thing any medical professional can do is dismiss or patronize sufferers of this positively horrific affliction. The best they can do is affirm the patient, admit they have no answers, and assist the patient in finding appropriate resources.
Bear in mind that this condition is spreading. At least six doctors have gone on record as having it, along with some recognizable public personalities such as Joni Mitchell, former baseball supertalent Billy Koch, Louise Mandrell's husband, and others.
It can no longer be dismissed or marginalized.

Last edited by Prayingforall; 12-02-2009 at 05:04 AM.

 
Old 12-02-2009, 09:38 AM   #6
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Re: Has anyone heard of Morgellons Disease?

Hey prayingforall,

Thank you for your comments. I will have to respectfully disagree with your corrections. As someone with quite a bit of experience with Morgellons' patients, though admittedly not uniformly, there is a lot of success with antipsychotic agents such as risperdal and pimozide. I agree that formication is a difficult symptom to treat, there are certain people who do in fact respond to the above drugs, but also amitryptiline and gabapentin (or pregabalin) and also estrogen replacement in perimenopausal women. I am a huge proponent of natural remedies--that's for mentioning them--and though I'm not as familiar with them, if there are treatments that work to help people with these troubling symptoms, more power to them!

Finally, the difficult part of Morgellons is that, because it's a clinical diagnosis, there's not a very rigid case definition. As a result, the patients classified within the diagnosis are very heterogenous and there aren't a lot of objective criteria. Interesting about the lab confirmation that the fibers in Morgellons are unlike any other material found previously. That's really interesting! I am also looking forward to seeing the results of the study being performed by the CDC--it's about time someone helped these people with a sometimes debilitating illness!!

Last edited by harka; 12-02-2009 at 09:39 AM.

 
Old 12-02-2009, 09:51 AM   #7
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Re: Has anyone heard of Morgellons Disease?

Prayingforall,
Thank you so much for message. I appreciate what you said, it is terrible to be treated like you are some kind of nutcase. Worse, treatment and to be cured is all i really want. If you have any more information regarding this "nightmare" pls pass it on.
Thanking you in advance for your mind, knowledge and compassion.
Bughater

 
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Old 12-04-2009, 12:30 AM   #8
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Re: Has anyone heard of Morgellons Disease?

Good luck bughater, thankfully this issue has been brought to light over the past few years. I really have to think that harka is only trying to help in the sense that the approach his would be to sort of turn off the receptors that are creating the "itchy feeling" because no infectious agent has been found. I guess its a matter of "do no harm" and I can respect that totally; however, this condition progessed in my case...it didn't stay confined to the skin...months later it was my gastrointestinal system, my liver, my sinuses, my heart, and I even had and still have neurological symptoms. This is scary and I really hate the term "unexplained dermopathy" because it goes way beyond the skin.
Sorry, but there is no evidence of what exactly is causing all of these symptoms yet. Hopefully soon, as I've been dealing with this for about 7 years now.

 
Old 12-04-2009, 05:49 AM   #9
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Re: Has anyone heard of Morgellons Disease?

Thank you dc....yes, I am trying to help with the suggestions. I find it weird to focus on the word "antipsychotic" and then ignore the rest of my post talking stressing that people with Morgellons ARE NOT CRAZY!! Perhaps "antipsychotic" is the wrong word to use and "neurotropic" is better. And yeah, that is exactly the aim with the neurotropic agents, to try to calm down the receptors which are signalling to the brain giving the uncomfortable sensations. The same thing is done for patients who are experiencing post-herpetic neuralgia, which in some cases can mimic Morgellons which has prompted some people to search for a link. Believe me to those of you reading my posts, I do not think you're crazy, but there are therapies which I have seen work in many individuals, but they have to get around the idea that they're taking a neurotropic agent.

 
Old 12-05-2009, 06:01 AM   #10
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Re: Has anyone heard of Morgellons Disease?

I am in touch with MANY Morgellons sufferers, and work with a doctor who has a caseload of Morgellons patients.
With special equipment, I have seen a network of fibers that weave in and out of normal-appearing skin. Some movement is seen in some of these fibers which are being produced inside the body. (See Ron Pogue's statements regarding this; he is from the Tulsa Crime Lab who was involved in the analysis of these fibers).
It is the growth of these fibers within the skin that is creating the sensation of crawling. It is totally irresponsible to focus on anti-psychotic drugs to deal with this sci-fi illness.
The medical world has got to stop dismissing this condition, as it is spreading. There are new cases every single day. And the majority of Morgellons victims look back and realize they had early warning signs, except who knew about Morgellons and what these indicators meant?
I raise this last point in order to underscore the contention that the number of recognized cases are the tip of the iceberg, i.e., that there are far more cases in these early stages with very minor symptoms that are on their way to a full blown case. The full blown picture frequently emerges after a toxic exposure to mold, pesticides, or even mites or other "bugs".
There is a strong correlation between Lyme Disease and Morgellons. That association must be investigated to see whether it is a case of a common vector that transmits both conditions or some other explanation.
In any case, we can expect to see far more cases in the next year or two, if only due to the fact that Lyme is the fastest growing vector-borne illness and spreading quickly. It would be nice if the medical world was ahead of this tsunami.

 
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Old 12-05-2009, 04:58 PM   #11
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Re: Has anyone heard of Morgellons Disease?

I'm sorry everyone--I seem to have hit a nerve with a few individuals. I hope you all realize that my comments were not meant to in any way be misconstrued as me saying Morgellons patients are crazy. The medications I was talking about are for help with the skin symptoms, and they do so by peripheral neuro- and nociceptive modulation.

At the risk of offending anyone else, I won't post any more comments on this thread; however.

Last edited by moderator2; 12-05-2009 at 06:07 PM. Reason: please do not solicit private messages, as per the posting policy

 
Old 01-04-2010, 07:38 AM   #12
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Re: Has anyone heard of Morgellons Disease?

OMG - - You are clearly not alone.

I have been dealing with these exact symptoms for over 2 years now. I have had blood tests etc . . . and keep being told that I simply have allergies (to my pets - which I have had forever). It was not until today that I learned of this Morgellon Disease sweeping the Country. In a way, I was relieved that exactly what I have been dealing with for so long, was not in my head, as i was starting to think, but on the other hand, was totally saddened at the fact that there is no exact cause or cure. I look at those photos, and am scared to death that my skin is going to rot off my body, and yet have no way of preventing it, as there is no cure . . . I am frustrated, scared, sickened by what it is doing to my skin, my head (at least is covered by hair), but my arms and legs are covered in scars, as is the outer surface of my face, chin and back of neck. Where the hell did this come from? How did I get it? Will it eventually kill me? and what about my poor pets, who some have shown signs of itching, and have been checked for mites and fleas, and they have none. At least I know I am not crazy, but I still have no answers.

The press release on utube says that the Disease Control folks are going to releasing information soon on this - - - cure or remedy info - - not sure. I ended up learing of all this through *****. Check it out, it will lead you to sites and news releases. They are saying it is possible that this is from some weird chemical spraying, among other possibilities . . . . I hope for your sake, as well as mine and thousands of others apparently, that they find a cure before something serious starts happening.

Thanks for posting your info in the message Board - - -you ARE NOT ALONE!

 
Old 01-05-2010, 07:51 AM   #13
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Re: Has anyone heard of Morgellons Disease?

Katwood -

I am always saddened when new people present themselves, but it happens all too often. I am so sorry that you are also struggling with this, and that beloved pets are involved. It happened to me, too (pets).

The CDC is stalling, for who knows what reason(s). This study, now going into its 3rd year without a sliver of information being released, was supposed to conclude in a year. Their silence speaks volumes (i.e., [I]something[I] has been found that they are grappling with. The US Army Lab has had samples from Morgellons sufferers for over a year.

I'm also afraid something "serious" has already happened. Unless they come forth with concrete information soon, this thing will continue to spread (it is now global, on every continent except Antarctica).

There are effective strategies for improving (not masking) the manifestations. There are even some who consider themselves symptom-free, even "cured" (though I have some doubt about that being possible).

There is, unfortunately, a lot of crazy-talk on the internet about Morgellons. When you've experienced it you understand why this happens. I don't think there is anything more frightening and bizarre; suicides are not uncommon.

In order to find effective strategies you will have to wade through much speculation about what is causing it. My advice to you is to stay away from it because none of it is proven and will only further confuse and frighten you. These theories are also spawned by non-scientists who lack the background to be making such claims.

The best research that is going on right now is at Oklahoma State Univ - Dr. Randy Wymore - but it is painfully slow for many reasons including limited funding.

The best of luck to you.

 
Old 01-06-2010, 06:44 AM   #14
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Re: Has anyone heard of Morgellons Disease?

Prayingforall - - Excellent response to Harka's obviously unfounded and absolutely rediculous statements and suggestions for medications!!!!! It is clearly people like this that have caused so many others to suffer in silence. This is VERY REAL.

Thank you.

 
Old 01-06-2010, 06:57 AM   #15
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Re: Has anyone heard of Morgellons Disease?

Prayingforall -

Thank you - - Really!

 
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