Friend has Morgellons Symptoms . . .

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graceannrose
Veteran Member


Date Joined Jun 2006
Total Posts : 561
   Posted 12/9/2008 5:20 PM (GMT -7)   
My friends. I have not visited here for a while, I hope everyone is doing as well as possible.
 
I know that this is not a Morgellons support board but as I write, my head is reeling.
 
I called a dear friend of mine this evening, and when I asked her how she was doing she began to cry. She described to me that she has been suffering from ulcers/sores over her body and head for the last month.
 
She described a sensation as though being bitten by tiny insects, along with finding mysterious 'fibers' creeping out from her skin. She has been collecting these 'fibers' in a small test tube.
 
She has visited a couple of doctors, the first said allergies. The second said 'delusional parasitosis'! She returns to the second doctor on Friday. He prescribed her (get this) doxy for the ulcers. She reports some improvement, no 'herx' type reaction.
 
Tomorrow I am going to call my LLMD to see if he can give me a referral for a doctor to help her.
 
In the meantime, if any of you know of any reliable research / resources / websites / support forums or have any advice or experience with this I would very  much appreciate it.
 
Speaking to my friend I did the best I could to reassure her and be as calm and collected as possible. But can I really tell my friend that 'good help is available' if this is indeed what is wrong with her? I now know that help is available for Lyme sufferers, but what about Morgellons?
 
I know that I cannot jump to any conclusions, but I am so concerned for my friend right now. I could never have dreamed that this would happen to someone close to me. It seems impossible. It is like a horrible nightmare that this can be happening. How could this be happening, first myself with Lyme, now my friend, if these illnesses are supposedly so incredibly rare?   
 
 
 

Diagnosed with Tick-Borne Illness in August 2006. Currently symptom-free.

 

"The joy of life can be restored ... Don’t give up hope. There are answers, solutions, and assistance. There is life after Lyme."

 

"Why yes I did go 'Doctor shopping', and it saved my life."

 


Dowa
Veteran Member


Date Joined Sep 2008
Total Posts : 1120
   Posted 12/9/2008 5:30 PM (GMT -7)   
Here you are Grace.  www.clongen.com  On the left had side you will see morgellons.  D

runningiri
Regular Member


Date Joined Jan 2008
Total Posts : 373
   Posted 12/9/2008 10:44 PM (GMT -7)   
The show "Mystery Diagnosis" just did a feature on Morgellons on Monday night. The woman that was on the show had much improvement by taking an anti-parasitic drug of some sort. Perhaps you could do a Google search and find the name of the drug as well as the doctor that was treating her? I'm not sure, but I think the doctor was in either Texas or California - she was a nurse practitioner. I also remember hearing that Morgellon's patients are all testing positive for lyme I will do some digging around and see what I come up with.

I'm so sorry to hear about your friend as this is indeed a dreaded condition to be suffering from.

Runningirl

bcaring
Regular Member


Date Joined Feb 2006
Total Posts : 346
   Posted 12/9/2008 11:40 PM (GMT -7)   
I belive the nurses name is Ginger Savely. She and Dr. Raphael Strickler work within a foundation dedicated to helping Morgellons patients. Here is the link

http://www.cherokeechas.com/gsavely.htm

Also, if you google her name you will find a lot of links.

I am so sorry about your friend. She must be very frightened.

bcaring

phsinvent
Veteran Member


Date Joined Aug 2006
Total Posts : 1155
   Posted 12/9/2008 11:41 PM (GMT -7)   
She will most likely got to hundreds of dr's before anyone will take her serious. And this complex known as morgellons is spreading fast from California, texas and florida. Those with morgellons are being called crazy and cannot even get the treatment that we fight so hard to get. They are actually in a much worse postion than the lyme community. If she cannot find anyone to take it serious then check below. She may have to take matters into her own hands. You might have some knowledge about some of these meds and maybe you can help her. She may have to resort to overseas generic meds if no dr's here in the united states will help her. If so, get a hold of me and i can give you some good sources. don't tell her this but the main cause of death from morgellons is suicide. It appears to drive them crazy, itching and not being able to sleep etc. Some of those with morgellons do appear to have the lyme spirochete also present. I've heard a few call it a new co-infection. So little is known.
 
 
I'd recommend covering all of the bases. Bacteria, Parasites and Protozoans. You may or may not be able to take them all together, you will have to use online drug checkers to see what can be taken together if no dr will help her. but some of the following might be a great start.
 
Antibacterial:
Biaxin, Doxycycline, Flagyl, Clindamycin
 
Antiparasites:
Ivermectin, Alinia(Nitazoxanide), humaworm?
 
Antiprotozoal: (antimalaria or babesia types)
Plaquenil, Mepron, Malarone, Artmenisin, Riamet, Quinine

beadaddict
Regular Member


Date Joined Jan 2008
Total Posts : 64
   Posted 12/10/2008 8:04 AM (GMT -7)   

Here are some more Morgellons resources:

http://morgellons.org/

http://www.morgellonsguide.com/

And the CDC page on Morgellons.  While not exactly helpful, at least they're starting to look into it and take it seriously.

http://www.cdc.gov/unexplaineddermopathy/general_info.html

And some forums for those with Morgellons:

http://morgellonsgroup.proboards23.com/index.cgi

http://www.morgellonsite.com/forum/

http://lymebusters.proboards39.com/index.cgi?board=rash  this one's for both lyme and morgellons

Sincerely hoping your friend finds some answers and relief soon!


graceannrose
Veteran Member


Date Joined Jun 2006
Total Posts : 561
   Posted 12/10/2008 4:17 PM (GMT -7)   
I would like to thank you all so much for your words of support and for the information you have provided.

I called my own LLMD this morning and discovered that he has been seeing and treating Morgellons patients. The wait is very long (March 2009!) but my friend will be on the wait list in case of any cancellation. I am hoping and praying that she will not need to wait so long.

So she'll see the regular MD on Friday. He already presecribed one course of doxy and promised her that he would 'research more' about Morgellons. Of course, this means very little from a regular MD, but since the doxy seems to be helping with her symptoms, maybe he'll prescribe another course.

At least I can talk to her and share my own experience with Lyme. It's not exactly the same, but close enough. I'm also going to forward the information received here including the Morgellons forums so she can talk to others who have been through it.

Thank you all so much! I was so freaked out last night I had to take a xanax for myself left over from my old LD stash! I can't imagine how she must be feeling. She is calmer tonight after we discussed that there is a doctor who can help and that we just need to stay the course until we can get a treatment plan in place.

I never would have imagined this. Lyme disease would not surprise me but Morgellons ... my god. Thanks again guys for your help.

Diagnosed with Tick-Borne Illness in August 2006. Currently symptom-free.

 

"The joy of life can be restored ... Don’t give up hope. There are answers, solutions, and assistance. There is life after Lyme."

 

"Why yes I did go 'Doctor shopping', and it saved my life."

 


JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 12/10/2008 5:48 PM (GMT -7)   
The medical community never fails to disappoint and surprise me. Once I don't think I can lower my expectations anymore... they go a little lower. Unfortunately, Morgellans will probably come behind Lyme disease in "final" recognition as an actual chronic disease.

All the best to you and your friend.
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it's the only thing that ever has.  - Margaret Meade
06/00- The beginning, 08/01-LD positive, 10/01- Igenex and CDC LD positive, 10/02-LD positive, 11/03-LD positive, 10/07-Bartonella positive, CD57=3 Current Rx's 11/12/08: Wellbutrin 300mg, Paxil 60mg, Xanax 5mg, Rozerem 8mg, Darvocet, Acidophilus, Rifampin 600mg, Levaquin 500mg, Lyrica 150 to 300mg, Skelexa, Restoril
Medicare/SSDI theme song - http://www.youtube.com/watch?v=bd2B6SjMh_w 
"How much more can I take?", songhttp://www.youtube.com/watch?v=5gHiR1xeOSs
 


Danser
New Member


Date Joined Dec 2008
Total Posts : 3
   Posted 12/22/2008 2:18 PM (GMT -7)   
Morgellons is a horrific disease that steals the life from its victims. Because the health care industry sees no potential profit in conducting legitimate research, very little is being done at the moment.

There is, however, a substance that eliminates the symptoms and allows the Morgellons victim to regain their lives and function in a somewhat normal fashion. Nutrasilver eliminates the cognitive issues in about 2 weeks and the lesions are generally gone in 3 weeks. It is non-toxic and it works every time. Hundreds of Morgellons victims have gotten their lives back; all you have to do is follow the instructions created by a prominent MD and watch Morgellons disappear while your energy comes back and your brain fog and lesions go away. You can see pictures of the lesions before and after by visiting here: http://brandytwirl.multiply.com/photos/album/1/Morgellons_Pictures_Before_and_After_Treatment

God bless all of us and Merry Christmas

Danser
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