Robert, I have got the cough syrup. We shall start with it this evening.
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Originally Posted by chasmo
first what is "CFS"
There are many people out there who are doing great with their bipolar disorder. You seems to have the kitchen sink type of disorder!! having all those conditions must be hard on you. My thoughts are:
1. have you had a workup by a top notch diagnostioc clinic? Like Cleavland Clinic??
2. maybe if you get one of your diseases under control, the rest will be easier to treat??
my .02 cent worth anyway.
keep us informed about your LDN trial!!'
sending a hug your way, I'm a big believer in them!!
Charlie
P.S. does your friend go to a good movement disorder specialist? a "world renoun specialist" may NOT be the best for him.
A good diagnostic center is what he needs. Tell us what area of the country he is in and he can get reccomendations on a diagnostic center and a top notch MDS.
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Chasmo, CFS is chronic fatigue syndrome, many with lupus have it.
With the narcotic like painkiller I am on now, that is a lot better. (Except yesterday when I had an additional capsule having forgotten that I'd already had one, and boy was I wired. Friends were over for dinner and you should have seen the looks on their faces. I did tell them about the extra medication though, otherwise I'd probably be kept under keen observation over the next few days).
I don't live in the U.S., but comparing the treatment I get here in India for both bipolar and lupus with those that my friends receive abroad, I really feel lucky and am honestly far better off. I have fantastic relations with my doctors, and in the last eleven years have never had the need to look further for help.
In fact I am glad I came back from England. A lovely girl, a very close friend's daughter was also diagnosed with bipolar about five years ago.
She comes from a privileged background and she has the wherewithal to get the best of treatments. After unsatisfactory consultations in private clinics, she is now with the NHS, but has had to be hospitalised three times already, and has had her life so compromised that nobody in her very extended family trust her to make responsible decisions. Even I can see that she is grossly under-medicated.
Many people with lupus also suffer from depression and some with bipolar, there seems to be a connection. But as of now the treatments are done symptomatically and independent of each other.
The hugs are welcome. Very welcome. To make sure that I get more, here are a few from me to you.
Rick -
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Isis, (IMHO always), you and we are canaries in the mine. The Industrial Revolution began about 1750 in London. The first undeniable description of PD was made in London in 1817. One of the basic changes of the IR was the introduction of chronic stress into the average person's daily life. Before that time acute stress was the norm and the social structure of the extended family handled that well.
Chronic stress is very destructive over time. It produces physical alterations in the endocrine system in the areas dedicated to maintaining a state of balance or health (homeostasis). These alterations lead to constantly elevated stress hormones which destroy tissue as well as interfere chemically with normal function.
The wild card in all this is that these changes become hereditary by virtue of the effects of maternal stress hormones upon the fetus. And it is transgenerational - meaning that although yourmother led a stress free life, the stresses your grandmother endured affect your system.
The bottom line is that if one introduces chronic stress into a society, over time the norm for that society is going to change in a negative manner. The negative effects of chronic stress are going to accumulate and bring a host of vulnerabilities with them. In PD, it synergizes with neuroinflammation. All these other maladies of modern times (CFS, bipolar, schizophrenia, autism, diabetes, metabolic syndrome, ...) show tantalizing links to this disruption of balance, which is why my own blog is entitled A Matter of Balance.
The point of this rambling crash course is that I am becoming more and more convinced that the LDN and LDDXM regimens are going to prove to be a new approach in Western medicine - the adaptogen. Long a familiar concept in the East, the idea of a drug that simply makes it possible for one's body to right itself is new. But it provides an explanation for why patients dealing with a dozen different diseases report success and do so emphatically. Keep us posted. -Rick
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I agree, although I have never put this into words. The rambling serves the thought well.
Thank you all again. I have begun my journey to some of your personal blogs. I need to be a sponge and soak up every information possible on PD now. By dear friend has finally given me the liberty to have an opinion in his treatment. I have been so frustrated these past years with having to keep my mouth shut that I refused to read up.
Oh! - Getting rid of that Comtan has also got rid of the extreme tremor.
I do hope that my writing about the BP and lupus is not bothering anyone.
