Best Doctors for Behcets, Plus exhaustion and an "Off Label" drug

[sneakyblonde]

Hi, I am Cindy and I am new. I don't know which tag to use. I see many people asking about Meds, Eye problems and how to get their docs to LISTEN! Here is a bit of everything. I hope some of this will help some of you.

The "GODS" of Behcets medicine in the U.S. and world wide, are the two Doctors named Yazici. One is at the New York Behcets diagnosis and treatment center, USA. They are two Brothers, their Doctor father, is in TURKEY. It is Behcets Central and they are more advanced than we are with this disease.

Look for any Papers, or Studies they have written. Print them out and TAKE them to your doctors, RE: Eye, Skin, Neuro, etc. Vision IS a big deal and MUST be treated!

I believe both doctors consult with other doctors like yours, but are not accepting new patients. Look on youtube for Behcets and Dr. Yazici . There are several videos and they talk about all the symptoms and treatments. Search "Behcets" eye or skin, etc. and "Dr. Yazici". You will find the best, up to date info to give your doctor. PRINT IT and take it to YOUR doctor!!

At the New York Behcets Medical center on-line, is the BIO on Dr. Yazici. It is extensive and impressive, nearly 300 papers and studies that he has been involved in, both here in the U.S., Turkey and other countries! No sensible doctor would refuse what these great docs have to say about Behcets!

For my exhaustion I take PROVIGIL, (Prescription only). It is for "Day Time Sleepiness" and Narcolepcey (spelling?). Without it I would sleep ALL day because my exhaustion is so profound now.

A Doctor (Neurologist at U.C. San Francisco, California USA), at this top teaching hospital - suggested we add AMANTATDINE, an antiviral med to help my energy. ( I remembered a number of years before, I had been on it for the flu, and my energy level HAD improved. At the time I told my doctor it helped my energy - She had no idea why. But I was much sicker the second time and it did almost nothing. I had not yet been diagnosed with Behcets or Neuro-Behcets.

I promise I will try to get my "Profile" up soon. I have had every "RARE" symptom in the book of Behcets! Even two P.E.s (Pulmonary Embolisms, blood clots in the lungs that formed there), that should have killed me.

I am going to try "LDN", LOW DOSE NALTREXONE. On their HOME PAGE (LDN.com? In USA), there are directions to compound it at home, to save money. I heard about it at M.S. meetings, and it IS helping Behcets patients also. My Neuro is writing me a script for it, I need a cheap place to buy it. Hopefully next month I will start it. I will give updates on my progress - IF there are any.

But, BEWARE: It is a drug that at 50mg full strength, is used for HEROIN, ALCOHOL and other ADDICTIONS. If it shows up in your medical records - someone might think you are/were an addict and not get a job, etc., because of it. (An addict takes a 50mg pill a day.)

"Low Dose" is: Dissolve ONE 50mg pill in 50 ml of distilled water, refrigerate it, and use an EYE DROPPER. Doses are in mg. Gradually increasing the dose weekly to no more than 4 mg a day. Double check the website - I could be wrong on facts and figures. I am a PATIENT - NOT A DOCTOR. Always check with your doctor and/or Pharmacist before trying any or all info here.

If you take Pain meds, you MUST stagger the LDN dose - as it will STOP pain meds from working. (It acts on the Morphine receptrors in the brain and raises natural Brain Chemicals. It is suggested you take the LDN between 11pm and 3am, but others take it earlier and claims it works for them.

All the info is on that page for "How To". It is suggested to take it in juice, because of the BAD taste, they say, you will learn to LOVE. LDN Medication can be bought "Compounded" in capsules, by a Compounding Pharmacist. It can be bought Compounded or 50mg pills to "DIY" it by dissolving it, from other countries without a prescription, but buyer beware. They may not contain what they say they do.

I have a Rite Aid Pharmacy, and I got an "Oral Syringe, with Bottle Adapter" for a few dollars U.S.. It fits in the neck of different sized bottles,( like Cough Syrup comes in), and an "Oral Dosing Syringe", is used to draw the right dosage out of the bottle easier. Rite Aid GAVE me an Amber bottle, suggested for "DIY", that will hold more than 50ml of liquid. I already have pill cutters and pill crushers - like most everyone out there.

This will be my last effort. My Neuro has an MS patient it has worked wonders for. It is supposed to help Behcets, also.

We will see...

Cindy

Central California, USA

[rooser1]

Funny you mention provigil-

I was on that too- ended up causing the biggest flare of my life bc I did too many things with my new found energy. But God, it was wonderful. The grass was greener on the other side.

Took me almost 2 years to get back to a shitty "norm" after that (joint pains and fatigue whenever and etc)

I found that dietary changes and weight training sky rocketed my energy. I have finally figured out that after ten plus years- I am sucrose intolerant so there is zero percent of sugar in my diet. all my inflammation and fatigue and infections were caused by it. since i changed to just meats, fats, and veggies- I have never felt so good. I also make sure to get my 8 hours every night and not over do it on wkds aka the ultimate rest days.

But anyhoo- what a great post.

stay well-

rooser

bmore md

[sneakyblonde in reply to rooser1]

I was a dancer - 3 nights a week, (I can't "tandem" walk, My balance is GONE), I ate healthy, etc. The Neuro-Behcets hit me like a fast freight train. Now, without the Provigil (400mg), I sleep all day. I do not have "New Found Energy". I wish I did. Behcets can effect each of us differently. I also have 3 other Genetic Diseases. I did not get a "gene pool", I got a "CESS POOL". I am leaving my body to "MEDCURE.ORG" - Whole Body Donation, maybe I can make a difference and find a CURE through my gift.

Best of Luck, Stay Healthy!

Cindy

[rooser1 in reply to sneakyblonde]

with your neuro behcets- do you get meningitis? I asked my rhuemy if meningitis was affiliated with neuro and she honestly didnt have an answer.... says the same old (but true) BD affects everyone differently. I think ive only talked to one other person with meningitis and they werent neuro ( I honestly can remember- i have the worst memory)

But any ways- I get meningitis with my flares, do you?

[Pvancourt]

Thank you for sharing what you've learned about yourself with Behcets. I love seeing new meds mentioned that I hadn't heard of yet.

Do you take Prednisone? I've been on it for 16 years. Mostly at a low 5mg dose. I would love to get off it.

When I was seeing a Naturopath I tried LDN, it helped me with energy and just an overall sense of being. I hope it works for you. I need to find another doc that will prescribe it.

I've been in a huge flare for 4 months and I'm exhausted. I don't want to end back up in bed so any new info is helpful for me.

Thanks!

Paula