Re: New Mainstream Rheumatologist Doctor -His Cure for CFS/Janet

[Guest guest]

Hi, Janet.

" alwaysacutie2u " <jgstev716@...> wrote:

>

> Hi All/Rich,

>

> Today I went to a rheumatologist here in San Diego who is suppossed to

> be one of the best. (I had to wait 5 months to get into see him!)

>

> This is his cure for CFS:

>

> He prescribed Azulfidine EN and says this works as a immune modulator.

***Nondenatured wheys like RenewPro are immunomodulators. There are many. I

just like to take what appears to be getting at the root of the problem or close

to it without intolerable side effects or a drug which can eventually fizzle in

effect even if it does help at first. And immunomoduclation is just a part of

the problem, not the whole ball game.

He did tell me this fill affect my folate status and I had just asked

the group about that, since that seems to be a problem for me. He feels CFS is

auto immune. He also discussed quite at length the disease known as Sjogren's

syndrome.

***I wonder what SNPs Sjogren's syndrome sufferers have? I think all

of the chronic diseases are up for finding out what SNPs seem to be common to

their sufferers and then treating those deficits accordingly, as in

nutrigenomically, like many are doing on this list now experimentally for

ME/CFS.

He also gave me Neurotim (sp) for my nerve pain which I am going to

> take unless someone here has had real bad results with it.

***Neurontin is general harmless, though there are exceptions with bad

reactions. I tried it for a while. I wasn't impressed at any dose.

It seemed too light-weight for my ME/CFS symtoms, sort of like firing

bb gun pellets at King Kong.

> He took alot of blood work, urine test and told me to come back in one

> month for the labs and to let him know how I am doing. If I do ok, he

> is they going to prescribe Plaquenil (hydroxychloroquine)

***I recall many PWMEs using this and many other drugs, except for a few for

sleep and some pain symptoms, to no avail.

> At this point in my life, if I can be " cured " I will try anything from

> mainstream to alternative. I have lived with this beast for 25 years.

>

> Has anyone had experience with this drug???

***It's in ME/CFS folklore that some have been cured by a pharmaceutical

approach, but in 20 years of full blown ME/CFS myself I've yet to meet any one

of them and I've met many.

Any thoughts???.

>

> /Rich I would also welcome your feedback.

>

> I asked him straight out if he ever had gotten a CFS patient back on

> their feet and he said yes. Keep in mind I don't have alot of the

> symptoms associated with Fibro, I have the FATIGUE, BIG TIME.

>

> Can this protocoll hurt me???

***In the pocket book and on time spent on it, perhaps. Probably not in the

sense of making you profoundly sicker, though of course new things we ingest may

have the potential to challege our already challenged detox system in

unpredictable ways.

He says it will take about 3 months

> before I feel a difference.

>

> One thing that bugs me where ever I go. Everybody has their own

> protocoll to try!!!

***That's been the state of affairs for quite a while. One of my strategies is

to investigate and experiment with things where others seem to truly be making

progress and the science being explained for the results seems to make logical

sense to my understanding at the time. Sometimes new information comes along to

alter my understanding and cause me to see fatal flaw in the proposed treatment

at hand(ie, antibiotics, benicar, ampligen, etc) but I think that goes with the

territory of being experimental, IMO.

[Guest guest]

HI ,

Thank you for your feedback. I am open to the Renew Pro, but I had such a bad

reaction to Whey Protien Isolate with the diarrhea for a month until I stopped

and then the monster yeast infection I got and am still fighting, I feel like I

can't do anything with whey protien right now. That whey had lactorferrin in it

and I still had the above problems. I am taking small doses of subliguinal

glutathione, but I am still in a holding patttern there.

Janet

in San Diego

davidhall2020 <davidhall@...> wrote:

Hi, Janet.

" alwaysacutie2u " <jgstev716@...> wrote:

>

> Hi All/Rich,

>

> Today I went to a rheumatologist here in San Diego who is suppossed to

> be one of the best. (I had to wait 5 months to get into see him!)

>

> This is his cure for CFS:

>

> He prescribed Azulfidine EN and says this works as a immune modulator.

***Nondenatured wheys like RenewPro are immunomodulators. There are many. I just

like to take what appears to be getting at the root of the problem or close to

it without intolerable side effects or a drug which can eventually fizzle in

effect even if it does help at first. And immunomoduclation is just a part of

the problem, not the whole ball game.

He did tell me this fill affect my folate status and I had just asked

the group about that, since that seems to be a problem for me. He feels CFS is

auto immune. He also discussed quite at length the disease known as Sjogren's

syndrome.

***I wonder what SNPs Sjogren's syndrome sufferers have? I think all

of the chronic diseases are up for finding out what SNPs seem to be common to

their sufferers and then treating those deficits accordingly, as in

nutrigenomically, like many are doing on this list now experimentally for

ME/CFS.

He also gave me Neurotim (sp) for my nerve pain which I am going to

> take unless someone here has had real bad results with it.

***Neurontin is general harmless, though there are exceptions with bad

reactions. I tried it for a while. I wasn't impressed at any dose.

It seemed too light-weight for my ME/CFS symtoms, sort of like firing

bb gun pellets at King Kong.

> He took alot of blood work, urine test and told me to come back in one

> month for the labs and to let him know how I am doing. If I do ok, he

> is they going to prescribe Plaquenil (hydroxychloroquine)

***I recall many PWMEs using this and many other drugs, except for a few for

sleep and some pain symptoms, to no avail.

> At this point in my life, if I can be " cured " I will try anything from

> mainstream to alternative. I have lived with this beast for 25 years.

>

> Has anyone had experience with this drug???

***It's in ME/CFS folklore that some have been cured by a pharmaceutical

approach, but in 20 years of full blown ME/CFS myself I've yet to meet any one

of them and I've met many.

Any thoughts???.

>

> /Rich I would also welcome your feedback.

>

> I asked him straight out if he ever had gotten a CFS patient back on

> their feet and he said yes. Keep in mind I don't have alot of the

> symptoms associated with Fibro, I have the FATIGUE, BIG TIME.

>

> Can this protocoll hurt me???

***In the pocket book and on time spent on it, perhaps. Probably not in the

sense of making you profoundly sicker, though of course new things we ingest may

have the potential to challege our already challenged detox system in

unpredictable ways.

He says it will take about 3 months

> before I feel a difference.

>

> One thing that bugs me where ever I go. Everybody has their own

> protocoll to try!!!

***That's been the state of affairs for quite a while. One of my strategies is

to investigate and experiment with things where others seem to truly be making

progress and the science being explained for the results seems to make logical

sense to my understanding at the time. Sometimes new information comes along to

alter my understanding and cause me to see fatal flaw in the proposed treatment

at hand(ie, antibiotics, benicar, ampligen, etc) but I think that goes with the

territory of being experimental, IMO.

[Guest guest]

Hi, Janet.

I wasn't actually pushing RenewPro to you, to be clear. I was using it as one

example of a method of immunomodulation.

I get your situation and that you want results way sooner than yesterday like

most of us do. Correcting blocks in your methylation is another form of

immunomodulation or at least better immunity can be one of its downstream

effects.

Why not stay in a holding pattern, as you say, just a bit longer, until you get

more of your labs back and your SNP results? These might answer why you have

problems with whey products, perhaps help you see how to clear-up this problem

as well as provide much more solid and clearer direction for treatment overall.

Janet s <jgstev716@...> wrote:

>

> HI ,

>

> Thank you for your feedback. I am open to the Renew Pro, but I had such a

bad reaction to Whey Protien Isolate with the diarrhea for a month until I

stopped and then the monster yeast infection I got and am still fighting, I feel

like I can't do anything with whey protien right now. That whey had lactorferrin

in it and I still had the above problems. I am taking small doses of subliguinal

glutathione, but I am still in a holding patttern there.

>

> Janet

> in San Diego

[Guest guest]

Janet s <jgstev716@...> wrote:

> One thing that bugs me where ever I go. Everybody has their own

protocoll to try!!!

>

> ***That's been the state of affairs for quite a while. One of my

strategies is to investigate and experiment with things where others

seem to truly be making progress and the science being explained for

the results seems to make logical sense to my understanding at the

time. Sometimes new information comes along to alter my

understanding and cause me to see fatal flaw in the proposed

treatment at hand(ie, antibiotics, benicar, ampligen, etc) but I

think that goes with the territory of being experimental, IMO.

>

Well, one would hope that if anyone experiences a really major

level of recovery by some specific protocol, they would return to

tell others in these groups that they had been out living a much

more normal life - and give examples of their activities that would

differentiate them from people who only " Think I feel better by

doing this " .

-