Many trials, some answers

[Charles555]

Hi morgellons sufferers,

Ive tried most treatments for morgellons that are out there and that i can think of.
I tried raw garlic cloves(chewed with meat to prevent burning), malic acid, citric acid, salt, DMSA, vitamin c mass doses, coQ10 mass doses, hydrogen peroxide, MSM ozonated olive oil, nutrasilver, the alfalfa bathes. I have been treated for lyme disease since i got bitten by a tick but my symptoms are all morgellons (some overlap with lyme disease as well). Drugs Ive tried include amoxiicllin, septra doxycycline, ketek, clindamycin, biaxin, flucanoazole, metronazole, benicar, tindamax, plaquenil, biltricide, etc etc.

WHAT WORKED
What has helped the most is clindamyacin it keeps me feels almost normal and stopped the "I feel like im gonna die" feeling and has helped clear up alot of brain symptoms. I have tried going off of clindamyacin for as long as a month and alot of symptoms return. DMSA has caused a massive herx heimer reaction and I take 400mg three days a week-DMSA is a chelator it takes harmful metals out of the body (make sure to take some zinc occassionally (DMSA i got from vrp.com). Speaking of zinc, zinc has just recently become a huge help since I believe part of morgellons is auto immune. Try taking zinc glucongate 150mg for four days straight, and keep up a maintence dose. Citric and malic acid seem to help with "hard" cramped muscle characteristics of later stage morgellons. CoQ10 6grams (per Hulda Clark) pisses the morgellons off alot and mega boosts the immune system but doesnt seem to help too much long term and is expensive in those quantities. Plaquenil slaughtered alot of morgellon parasite form, but after only two weeks of taking it I got some minor, probably permanent, eye damage- beware eye swelling feelings early on. Biltricide had me feeling almost completely normal but after a month of taking it the morgellons "adapted" to it and doesnt help in the slightest anymore. Doxycycline/amoxicillin combo worked great early on but now is worthless. Other drugs/treatments that helped but then the morgellons "adapted" to it include fluconazole, biaxin, ketek, hydrogen peroxide, MSM, and garlic.


WARNING
I cannot overstate the need to avoid steriodal anti-inflammaories like medrol dose packs, as morgellons spread even more rapidly in every part of the body, increasing nerve symptoms everywhere. Also, I had horrible rare side effect with septra combined with NSAID (ibprofen). Septra didnt help in the slightest.

Also...
Id like to say in my opinion the nutra silver is a complete waste of money, since i tried it, but it is apparent that sales reps from the nutra silver company post occasionally with stories of hopeful recovery using it. That is probably also the case with the miraclous mineral supplement or whatever its called as well-although honestly i havent tried it. Alfalfa bathes are nice and calmed my skin down but since morgellons is systemic and not limited to the skin i did not see any lasting improvement. Taking alfalfa tablets orally didnt help me noticeably either. Vitamin C, to me, seems to feed the morgellons
or inflammation, exagerrating symptoms and making me emotional so I dont take large doses of it-- although I can now after taking the 150mg zinc for four days. I have taken vit C (i switched to the non acidic sodium asborbate) in mass doses for three weeks and didnt notice improvement afterward although i did feel better after stopping it ( that was before the zinc). The marshall protocol, i.e. taking benicar among other things seemed to help as well.

The clindamyacin (450mg during weekdays), now occasional zinc gluconate, and DMSA have my energy up and feeling good enough i can work 24 hours on the weekend-two twelve hour shifts. I have to reorder some benicar and see if I can run a stricker marshall protocol. Tindamax I take a couple times a month.

[hilly]

Charles, very helpful.. thanks a lot. Milly

[10meters]

Charles,

Thanks alot for the info. Clindamycin i will try. How many benicar do you need in a day?

Thanks,
10meters

[Charles555]

Benicar is supposed to be taken 40mg three or four times a day. If u want to stay by the protocol you avoid all sunlight and as much light (artifical or real) entering your eyes as you can stand, also avoid foods with vitamin D. Dr Marshall beleives normal or high vitamin D levels can cause low level inflamation which masks certain bacteria from the immune system. Certain diseases like chronic fatigue he attributes it too it. Feel free to check out the marshall protocol website, they are treating some morgellon patients there.

-Charles

[Margo]

Wow, Charles that is a long laundry list. How long have you had this disease? You must have spent and awful lot of your time and money trying these various treatments and we do appreciate your sharing them.

I believe that this is the biggest "rub" of this disease not being acknowledged is the fact that we have to go through so much trial and error and EXPENSE. I honestly wish I had saved ALL receipts at least from the prescriptions and tally it all up to give to legal council when all is said and done.

I've tried to weed through all you have listed and categorize them by herbal, otc, & prescription. Some I have heard of and tried. Some I have not. Perhaps you are one of the lucky ones who has a dr. who will readily prescribe antibiotics, etc to you. Mine will not do this readily.

It is so difficult to cherry pick what works but it does help when we share information, especially specific information such as dosing and time frame of use. Without any real help from the medical or scientific communities we need to start thinking and acting like scientists and meticulously recording the specifics in personal journals or notebooks to keep track of our findings. This is the only way there is some modicum of semblence and control over what works and what does not. Your efforts are greatly appreciated. If you help even one person with something which gives much needed relief, it was worth it.

Thank you.

Margo

P.S. I've organized your list a little bit for my own use and perhaps others.

OTC, herbal:
__________
Alfalfa bath/orally
Citric Acid
CoQ10
DMSA
Raw Garlic
Malic Acid
CoQ10
Hydrogen Peroxide
Malic Acid
MSM
Nutra Silver
Ozonated Olive Oil
Salt



Prescription:
__________

Amoxicillin
Benicar
Biaxin
Biltricide
Clindomycin
Doxycycline
Fluconazole
Ketek
Septra
Metronazole
Plonquenil-eye damage?
Tindamax
______________________
For more information on any of these drugs here are some links for drug interations/side effects, uses, etc.

http://www.drugs.com/

http://tinyurl.com/3sl5b


Thanks again

[niecy]

Hi Margo, I just wanted to say that my pharmacies keep records of all of my prescriptions. I go to them every year and get a print out for tax purposes. That might be something to try to have in you records for legal purposes.

Niecy
xxxxxx

[hilly]

Subject: NIH Undianosed Diseases Program

May 19, 2008

Dr. Doug Buckner & the Morgellons Research Foundation are pleased to announce their participation in today's NIH Undiagnosed Diseases teleconference during which Dr Buckner advocated for continued research into the cause of Morgellons Disease. Participants of this teleconference were aware of Morgellons disease and voiced support for further research into the condition.

The purpose of the teleconference was for NIH to share information about their Undiagnosed Diseases Program, a pilot program aimed at answering questions about medical conditions which have eluded diagnosis. Please note that patients with this, and any other, undiagnosed disease can be considered for this special program by first being referred to NIH by their physician or health-care provider. Although only 50-100 patients will be accepted into this program annually, we feel that it is a wonderful opportunity for all undiagnosed patients. Please see links below for additional details on this program including strict eligibility requirements.

If you are referred to this program, and would like to share any information with us, we would be very happy to hear from you.
Best wishes,
Morgellons Research Foundation

Frequently asked Questions: Undiagnosed Diseases Program:

Undiagnosed Diseases Program
Some patients wait years for a definitive diagnosis. Using a unique combination of scientific and medical expertise and resources at the National Institutes of Health (NIH), the Undiagnosed Diseases Program pursues two goals:

To provide answers to patients with mysterious conditions that have long eluded diagnosis
To advance medical knowledge about rare and common diseases

The program is trans-NIH in scope. It is organized by the National Human Genome Research Institute (NHGRI), the NIH Office of Rare Diseases (ORD) and the NIH Clinical Center. Many medical specialties will contribute expertise needed to conduct the program, including endocrinology, immunology, oncology, dermatology, dentistry, cardiology, and genetics, which are represented among the dozens of participating senior attending physicians who may participate in the program's clinical research.
Any longstanding medical condition that eludes diagnosis by a referring physician can be considered undiagnosed and may be of interest to this clinical research program. Of the total number of cases that may be referred to this program, a very limited number will be invited to proceed in the study at the discretion of the program's medical team.

If you are interested in participating in this clinical research program, discuss the option with your primary physician or health-care provider (nurse practitioner or physician's assistant). Information specialists at the Clinical Center's Patient Recruitment Call Center (1-866-444-8806) can provide more information about eligibility and what kinds of medical information referring physicians must submit for review by the program's medical team. You or your health-care provider can call.
Patients must be referred by a physician or health-care provider. Information your physician must provide directly to NIH includes:

A summary letter describing your condition, when it was first noted and your current health status
A list of treatments and medications that have already been tried and their effects
Copies of reports and results of pertinent diagnostic tests, along with X-rays, MRI results, and other imaging records/studies. Copies of the actual imaging studies are preferred.


Information for Patients


Information for Health Care Providers


NIH Launches Undiagnosed Diseases Program


NIH Office of Rare Diseases (ORD) - Undiagnosed Diseases Program


For more information call: 1-866-444-8806
Referrals to the program for potential acceptance must be made by primary care providers.

[carla]

That sounds interesting Milly .I wonder if Morgs would be included though.The way things are going it seems very unlikely.
I hope your feeling well again .
carla xxxxxxxxxxxxxxxxxx

[jonsi]

The Morgellons Research Foundation and several friends sent this to my personal e-mail. I am very thankful for this info, but am saddened in that I do not see an MD for treatment.

"If you are interested in participating in this clinical research program, discuss the option with your primary physician or health-care provider (nurse practitioner or physician's assistant)." So, I guess I'm left out. I will call the number to see if they will consider looking into the homeopathic methods that have returned my health and a somewhat normal lifestyle. Wish an "MD" would look at treatments that do not involve a prescription...

In the white light!
~jonsi

[hilly]

Carla... thanks so much, yes a little better. There's another couple of interesting articles under the Lyme heading... pm you soon, just off to a funeral ;<(