Discussion in 'ME/CFS Doctors' started by Butydoc, Mar 4, 2013.
I would also be interested in anyone's experiences with colchicine.
Got muscle weakness, mainly in arms, after 2 days of trying colchicine (Colgout). Fortunately this effect reversed on stopping the drug. Have heard people have better experiences trying different brands.
I was pre-warned that colchicine can cause toxic myopathy
Montoya has talked to me about colchicine, but I am waiting a few more months before I consider it. It doesn't seem like it would do anything for low NK function, for example.
Time to start thinking outside the box. Perhaps you can find a doctor to test you for....
Eostein-Barr Early antigen IgG (mono reactivation antibody) and HHV6 IgG and also Coxsackie B (1-6). If you have reactivated your EBV and/or HHV6, maybe the doctor can put you on a long term low dose of Famvir or Valrex. Presuming you are medically able to tolerate it. If you have reactivated one or many of the Coxsackie B viruses, you can start Equlibrant. That is what Dr.s Klimas/Rey are prescribing now. Dr. Rey also mentioned starting Low Dose Naltrexone as well.
If he is backed up for 4 years, then when is the 600 participant multi-pathogen study going to be completed that he started drawing blood for 2 years ago for?
Some communication would be nice?
I saw Montoya and one of his researchers today. They don't want to talk about their work just yet, but there is a paper that's been submitted for publication and is in the process of getting reviewed. They have literally millions of data points to plow through.
Butydoc and IreneF any update on how you are doing on this protocol? Thanks.
We are dealing with the GOD's again.
I would leave your appointment on book for Montoya and also look for someone else.It seems they could bring in more Dr. to help them. Anyone could die waiting to see them. Absolutely ridiculous. Have you tried Bradstreet in Cumming Ga? He is treating CFIDS pt.Know of 2-3 that have been ill that really liked him. Don't know how sick you are.
I imagine you had to send a deposit for your appointment?? Also I am seeing Dr. Susan Tanner an Environmental Dr. here in Buckhead in Atlanta. She is also good. Not one of the Prima Donnas -but really thorough and knows all the players. I agree- think outside the box.
San Diego #1
To be honest, I haven't experienced major improvements. I have somewhat better focus and concentration, but that's something that comes and goes.
Irene- Do not remember what area you are in. One thing I have started doing ifs to find a Good Environmental Dr. and Infectious Disease Dr. Take the tests in I want and discuss with them. I am much better since I did this and got away from my CFIDS Dr. Who clued in on one thing. I do agree with ric on the testing. Many things are going on that may not have anything to do with ME/CFS. They need to be ruled out Other than our immune system is weaker.
Some of the things I am on now have nothing to do with CFIDS . I feel I am much better. Still have to pace myself.
PLEASE EVERYONE THINK OUTSIDE THE BOX!!!!! CFIDS DR ARE NOT THE BOTTTOM LINE.
San Diego #1
SanDiego#1 I a m not familiar with that term Environmental Dr., can you clarify? Is that the same as Naturopath?
Environmental is an MD. Does all the tests for Pesticide and the same as Infectious disease. Mine has been involved with CFIDS-just doesn't go overboard on Meds. Alot of Alternative. She is the one that gives me my great Compounded supplements and found I had complete Adrenal exhaustion and very low Thyroid. Also gives me Saline IV and Vitamin IV.
She knows all the CFIDs Dr. Really pulled me out of the slump I was in from CFIDS Dr.Who said I had Heart Failure.
Mine is Susan Tanner in Atlanta. Very reasonable fees and files insurance. She e-mails me all the time if I am having a problem. I just love her. Feeling better every day. Try to run everything by her now and she will give me her HONEST opinion on what she thinks. Regardless of whether she is treating me for it or not.
I am sure there are different Dr. that call themselves Environmental. Naturepathic and etc. They may also be good. However I want someone that can decipher all the CFID Jargon for me too. Some of the others if not an MD don't have a clue.
If you are on the West Coast-you should have alot of them. They do not have to specialize in CFID to help you.
Another one that started me on Immune Globulin was an Infectious Disease Dr. He also treats and diag AIDS.
The CFID Dr. think they have the market sewed up-THEY DON'T WITH ME.
That is why they can charge the EXORBITANT fees. WE THINK WE HAVE NO OTHER CHOICES.
WE DO PEOPLE!!!!!!! THIS IS ONE THING I AGREE WITH ric ABOUT-THINK OUTSIDE THE BOX!!!!!
YOU ARE GOING TO GET BETTER!!!!!
San Diego #1
Sparrow- Environmental in my case is MD. She specializes in any illness that is caused by anything environmental or Viral or anything else. She Is wonderful. Brought me back from treatment that almost did me in from CFID specialist. Found out my Adenal, and thyroid were barely functional. On her compounded supplements. Saline IV and Vitamin IV. Very few drugs . I do take Immune Globulin. have for 20 years. I like the MD as she can decipher the CFIDS jargon from the CFIDS Dr. There may be a Naturapathic in your area that can do some of what she does. However, I like her as she has the credentials. PLEASE KNOW THIS- THE CFIDS DR. MAY THINK HAVE THIS ALL SEWED UP WITH THE EXORBETANT FEES AND WAITING PERIODS-HOWEVER THEY DON'T WITH ME. I SUPPOSEDLY SAW ONE OF THE BEST AND GOT WORSE BY THE DAY. OVERMEDICATED, OVER DIAGNOSED.SOME WANT YOU TO THINK YOU CANNOT LIVE WITHOUT THEM-YOU CAN. I HAVE REALIZED THE HARD WAY-THEY DON'T HAVE ALL THE ANSWERS.
PEOPLE-THINK OUTSIDE THE BOX-YOU DON'T HAVE TO STAY SICK. She does not have high fees and takes insurance. E-mails me if I am having a problem with any new med or treatment. Can't beat that.!!!!
YOU WILL GET BETTER!!!!!!
SAN DIEGO #1
Sorry I wrote this twice- Didn't think first post went through.
BEST WELLNESS EVER.
SAN DIEGO #1
I've been on 900 mg of valcyte and . 6mg colchicine since February. I have had clear improvement. My frequency of crashes and duration of crashes have diminished. I still have PEM but recover more quickly. I took a seven mile hike at 8000 foot altitude without a crash. Haven't done this in years. I still have some ans symptoms and brain fog, but not as severe. I think part of the improvement is my generally less stressed situation and the addition of the above drugs.
I have an appointment with Dr. Montoya on the 19 th of August and will write a follow-up.
Excellent to hear you are both doing better! Thanks for the responses. I need to learn more about colchicine...
You can also try a Google Site Search
Separate names with a comma.