Dear Don:
Thank you for the detailed description of your experience. My heart
goes out for you. As a newbie in PD, I always thought that all these drugs
especially L-dopa and the dopamine agonists are not natural products, and
eventually the body will recognize them as such and might lead to unwanted
side effects. Therefore, I have been so far postponing taking them in lieu
of trying some natural biological remedies. However, I am not qualified to
suggest anything for you, except to say that I have been trying
phosphatidylserine (PS) and glutathione-reduced (GSH), among the other
standard things lke vitmains and CoQ10 etc. Of these, I understand that
CoQ10 apparently comes in L- and D-isomer forms and it is not yet knwn
which is bettter for PD.
I find both PS and GSH are very helpful for me. In an earlier paper
(1989?), it was reported that in PD patients both dopamine and GSH are
highlhy reduced. Somehow people started substituting for dopamine (L-dopa)
but GSH has been left in the lurch. (I can think of one reason for this.
But that is not important now.)
The other reason regarding GSH is, that it is generally believed that
oral GSH is not aborbed by the system due to one report. Therefore, it is
thought that IV injection of GSH is more efffective than oral
administratiion of GSH. However, there are other two previous reports that
show the opposite. I find oral amdinistration of 50 mg/ day of GSH very
helpful. I understand that atleast one other person in our forum is taking
250 mg / day and finds it very helpful. Therefore, I started increasing my
dose to 50 mg in the morning with green tea and 50 mg in the afternoon with
my lunch. Although this does not alleviate all my symptoms 100%, I find
this very relaxing, and find myself highly energetic till I go to bed.
Remember, as you said once, PD is a designer disease. What is good
for me, may not be good for others. However, I thought I should share my
experience and let you decide your next step after consulting with your
doctor.
Wish you all the best.
Raj
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----- Original Message -----
From: "Don Adams" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Sunday, June 16, 2002 2:44 AM
Subject: Dopamine Agonists/Dr Romero
> Thanks, "Dr Jorge" ......I reached those conclusions anecdotally from my
> own experiences, and now you have confirmed my belief. I shared my
feelings
> in an e-mail to the list on 12June responding to a posting by Dolores
> Buente. I would add to that by remarking that the neurologist who
initially
> diagnosed my PD told me I could just take some Benadryl. When I said that
I
> had just read about some "new" (this was nearly 4 years ago) PD
> medications. He quickly wrote an RX for Eldepryl and I left. I then looked
> up this med and printed off the Mfgrs. documentation, about 15 or so
> pages. I read it carefully, and while there were many unfamiliar medical
> terms, I was able to sift through and highlight the significant
> conclusions, and study the statistics from their double blind trials. I
was
> amazed when I discovered that I had highlighted quotations in various
> contexts and on several separate pages that were redundant in that they
> stated that Eldepryl (selegiline) had been shown to be effective in the
> treatment of Parkinson's Disease WHEN (my highlight and paraphrase) USED
AS
> AN ADJUNCT TO DOPAMINE OR DOPAMINE AGONISTS. They were careful to word
> these statements in the positive tense. They didn't say it was shown NOT
> effective unless used as an adjunct. That was my first realization that
you
> had to carefully read and interpret these pharmaceutical documentations.
> When I went for my next appointment I took the complete documentation with
> my highlights in yellow marker and presented it in a very low key manner,
> asking the doctor if he was aware of what this said. He read it, looked
> flustered and said that he was not aware of that, that he knew of animal
> trials. I said I had read about Requip as being the new drug. The complete
> mfgr documentation was not on the Internet, and I had just seen news
> reports. He wrote an RX for Requip and I left after finding out that the
> MRI scan he had me have did not show any lesions or turmors. I probably
> judged this man too harshly, but I then had my regular physician make an
> appointment for me with a neurologist at Ochsner Clinic in New Orleans. I
> waited for 3 months for a consultation. During that time I had no
> medication and my left hand and leg tremor was worsening. The doctor at
> Ochsner's prescribed Requip, which I took exclusively other than the 2000
> units of Vitamin E daily that he recommended. I gradually, over the next
> year increased the Requip dosage up to 16 mg/day. It was somewhere in that
> period between 10 and 16 mg/day that I began to experience the really
> annoying side effects, sleep attacks, swelling of ankles and calves,
> stiffness in legs and back so it was difficult to put on sox or tie shoes,
> nausea, insomnia, mild hallucinations, flashes of light in my darkened
> bedroom. Then the dry, sticky mouth began. Eating became a chore not a
> pleasure. I spent 13 days in hospital with aspirant pneumonia. I continued
> with the Requip. At one visit to my neurologist I asked him about the
> terrible condition of my mouth, for which I had been treated for
candiasis,
> been sent to an oral surgeon for a Sjogren's biopsy, then had every blood
> test possible for Sjogren's and other rheumatoid possibilities. They were
> all negative. The diagnosis was a side effect from the Requip. My
> neurologist said he hated to take me off the Requip, so I agreed to try it
> until my next quarterly appointment. At that visit, I told the neuro I was
> ready to try something else....the other side effects were almost
> unbearable, but the mouth problem really was. Then too, I had fallen
asleep
> at a traffic light and woke up startled, wondering where I was and what
had
> happened. Fortunately the light had not changed to green before I roused.
> It was a frightening experience.
> I started on carbidopa/levadopa. After 6 months all the doctors
thought I
> should be clear of the Requip. All of the effects had disappeared but NOT
> the terrible mouth problem. The PD symptoms, tremor in left hand and leg,
> slight balance problem, insomnia, etc are still with me of course but are
> relieved by the Sinemet for an acceptable "on" period. I have been to
> every Doctor I thought might help the problem with my mouth, IM
> specialists, peridontist, oral surgeon, ENT, rheumatologist, and even an
> ophthamalogist for the Schimmer test for Sjogren's. (My eyes are not dry)
.
> Their attitudes have run the gamut from "It's the Parkinson's, you will
> just have to live with it", to a concerned opthamalogist, and my super
nice
> rheumatologist who says it is a puzzle to which he would like to find the
> answer. He says the symptom my mouth demonstrates is very Sjogren's-like,
> but no one I have found has had the same problem I have. Here it is, Dr
> Romero.........My mouth can be very dry at most times, and normal saliva
> seems stimulated by chewing gum, but at the same time saliva glands
excrete
> a thick, gummy saliva that coats my teeth, tongue, and the oral cavity in
> general. When I eat, food particles adhere to my teeth, etc. and the
thick,
> "rubber cement"-like saliva forms in my mouth. I use Biotene toothpaste,
> tried Biotene mouthwash, use Water Pik, electric tooth brush, tried every
> mouthwash known to me, one recommended by the ENT man at Ochsner's called
> Al Ka Lol. The Sjogren's treatment for dry mouth, Salogen, or (I think)
> pilocarpine, generates enough normal saliva that I drool at night, but the
> thick, dried "rubber cement" that coats the inside of my mouth is still
> there in the morning. I have just about given up the battle. The
> rheumatologist says he has not, and is planning on contacting the
authority
> on Sjogren's at Univ of Texas at San Antonio. That is, I think, my last
> hope. I sometimes think that this condition was begun by the Requip and
> that it is now a chronic and permanent condition. I have written Dr
> Lieberman and he said he had not heard of a PD condition like this. If
> anyone seeing this has had anything similar, please say so.
> In the meantime I will keep trying to see the humor in all this
and life
> in general. I really would see much more if all I had to contend with
right
> now were my somewhat mild PD symptoms.
> I hope this didn't bore you and I hope you could see it through to
the
> end. I only wish I had never tried the dopmine agonist.
>
> Regards and thanks for writing to the PIEN list.
> Don A
>
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