Hello everybody
As I promised on my previous post, today I'm going to talk about two drugs and another treatment.
I'll do my best not to give direct advice, but if I do please forgive me and just remember that everything that I write is just based on my experience with this illness since I was diagnosed in 1992.
I have mentioned before that in my opinion (and in the opinion of few other Doctors, including Dr Goldstein,) CFS is an illness of the brain, where this one has become vulnerable and as result, the brain has become overactive/irritated and maybe even inflamed. So all the treatments given by Dr Goldstein where directed at reducing that overactivity and bringing the brain under control.
The most effective medication that I have ever tried (prescribed to me by Dr Goldstein) is Chloral Hydrate.
Chloral Hydrate is the only drug that I've ever tried, that really brings the overactivity of the brain down!
Chloral Hydrate is a very old drug that works on the CNS, it reduces the activity of the brain and it works very differently that Benzodiazepines or Antiepileptics. It is usually found in capsule (soft gel capsule) and in syrup (it doesn't taste good.)
I have never taken Chloral Hydrate for more than 4-8 weeks, your body gets used to it pretty rapidly and it no longer works, but it's usually more than enough time to cause the brain to relax. The dosage that I've always taken is 500mg to 1000mg always at night, and it doesn't give you a hangover when you wake up.
Chloral Hydrate is so effective at bringing the activity of the CNS down, that after few weeks it can also make you feel more tired, but as soon as you stop taking it, your energy goes back to normal and your brain doesn't go back to being overactive (in my case, as long as I avoid the foods that I'm sensitive to, as well as avoiding smelling chemicals and being careful when I start exercising, I can have a normal life without any symptoms.)
I could write a lot more about Chloral Hydrate but I don't want to sound like I'm giving advice, so do your own research and please talk to a Doctor before taking Chloral Hydrate, you will need a prescription anyway. It is not expensive.
The second drug is Nexavir (formerly Kutapressin.) I'm sure you have heard of it. It was prescribed to me for the first time by Dr. Goldstein.
I spent few years taking Nexavir (2ml per day) and from my experience it helps a lot with problems of food sensitivities. I was able to eat whatever the hell I wanted when taking Nexavir without relapsing.
I don't think anyone really knows how Nexavir works, but some Doctors (including Dr. Goldstein) believe that it has an effects on the immune system and it can also work as an anti-inflammatory.
For many year now, whenever I have relapsed (most of the time from smelling Chemicals by accident, it's almost impossible not to smell anything at some point ((like paint)), and only few times from exercising too intensively,) I take Chloral Hydrate, 1 gram, for 4-8 weeks and 2 ml of Nexavir a day (injected of course) for 12 weeks, and I also watch everything that I eat (I avoid all that I'm sensitive to) and since when I have relapsed I'm usually unable to get out of the house, I don't have to worry about smelling any chemicals.
By doing this, I am always able to get back to a normal lifestyle within 12 weeks (the two people that I mentioned that have also recovered, they followed this protocol as well, exactly the same.)
*Now, if you are absolutely sure that you are suffering from "True CFS" and in your case, you don't think that food sensitive is a problem or you are taking care if, and when you smell a chemical you don't experience any worsening of your symptoms, but you continue feeling extremely fatigue, then you may find the following interesting.
In 1995, when I was visiting a relative in the UK, I found out that a group of Doctors were looking for patients with ME (CFS) in order to conduct research.
The research was directed at the use of Hydrotherapy as a treatment for CFS patients and I was able to take part of that study.
The first day they took a blood test, they checked your bone density and you took an EEG, among few other tests, and you had to answer a bunch of questions. You then agreed to do the Hydrotherapy (I will describe in a minute) everyday and come back for a check up every 3 months.
The Hydrotherapy involved getting in a bathtub with cool water. You started at 24°C, around 75°F, and you stayed in the water for 5 minutes. The next day 6 minutes, the next day 7 minutes and so on until you reached 20 minutes. When you reached 20 minutes you lower the temperature of the water by one degree Celsius, to 23°C (about 73° Fahrenheit) and you started with 5 minutes again, the next day 6 minutes and so on, until you reached 20 minutes. And then you lower the temperature of the water by 1 degree Celsius again, and you started again with 5 minutes.
You were supposed to stop lowering the temperature of the water when all your symptoms had disappeared. In my case that happened at 18°C (around 64° Fahrenheit.) I became almost addicted to feeling so energized and my brain cleared so much, it was awesome! But I have to admit that getting in a bathtub, everyday of the week, in water at 64°F (18°C) is not easy! But well worth for me!
The Doctors that were conducting the study believed that exposing your body to cool water on a regular basis, had a beneficial effect on the immune system, as well as increasing blood flow to the brain.
I don't know how many people participated in that study, they ran out of money after 9 months I think, but I do remember talking to few patients when we went back for the first check up after 3 months and all of them were feeling super energized and with a very clear brain.
I also have to say that a good number of patients dropped from the study, as I said, it is not easy getting your body in cool water everyday.
One last thing about my experience with Hydrotherapy, it is important to do it very gradually, you can relapse if all of the sudden you get in cold water and you give your body a sock! Not a smart thing to do.
By the way, your skin becomes paper thin, it is the most effective way of burning whatever fat you have. And when you get out of the bathtub, for the first 30 minutes you pee almost nonstop (that is just because a lot of blood has been filtered by your kidneys in a short period of time.)
Well, I hope some of you will find this information helpful. Please take care.
Next time I will talk about a new treatment that I haven't tried, simply because I have been feeling very well, but I truly believe that it has the potential of helping a good number of people that haven't found any relief so far. Maybe someone out there has already tried it and would like to share it with us.
Please excuse me, I really need to get going now. Take care.
P.S.: I hope I haven't given any direct advice?