Re: Successful Treatment!

[Guest guest]

I printed this out to show to my doc. I am sohappy that it is

working-that somethig is finallyworking for you. I hope it continues

to work indefinitely.

sincerely

denise

[Guest guest]

great news hope you continue to feel the improvement and all works well with

yu. I am glad you posted your info it is something to talk to the docs about

love, hugs and hope

Angie

[Guest guest]

Great new !!!!

Thanks for all the info too. I'm going to mention this to my doc when I see

her again in May!!!! I use Dapsone and I know it's caused a few problems

with my liver enzymes.

I'll keep my fingers crossed too that your health continues to improve!!!!!

>>>>>>>>>>>>>>>>>>>>>>>>>

I hope that this doesnt jinx things, but I thought that I would share with

you my positive test results from my recent treatment. Obviously, no single

protocol works for everyone, and RP may be caused by a variety of things,

but my improvement is dramatic:

My symptoms of RP include profound hearing loss, the head and muscle pains,

fevers chills etc. In addition, I suffer from a kidney syndrome called

proteinuria. This is the spillage of protein from your kidney into the

urine. Ordinarily urine may contain about 250 milligrams of protein over a

24 hr period. My kidneys got to the point where 7 grams of protein where

being spilled per day. The problem is that if you spill more than 3 grams a

day your kidneys start to die.

I of course have chased this for years with crummy doubting doctors before I

received the RP diagnosis by my hero, Dr. Trentham. The only drugs having

made any reaction: Cipro and Plaquenil. These are quinine based derivatives

and are antimalarials. They reduced the proteinuria and the pain symptoms

somewhat. They are used for arthritis, RP etc., but no one knows why they

work.

I discussed with Dr Trentham other antimalarials. Dapsone is used but can

have some adverse effects on the blood. So we tried another antimalarial.

CHLOROQUINE. This is one of the grandaddies of malarial treatment.

After 4 weeks on the Chloroquine, my proteinuria dramatically fell from 7

grams to 1 gram, reversing almost 10 years of damage. I have more energy,

less headaches etc.

Now a caveat: Dr. Trentham told me that he has used Chloroquine before

without the dramatic results. But in my case the results are absolutely

profound. And the side effects are not nearly so damaging as the immune

suppressants.

I may be sent to see an Infectious Disease expert in the next couple of

weeks. The results are so dramatic that there could be a possibility that a

living agent may be causing the effects of my RP. Mycoplasma respond to

treatment with quinine derivatives.

I will keep you posted.

Rock On.

BTW, the only other drug I am on is Salagen. Promotes salivation, it has

stopped my headaches. Whenever I feel the needle type pain, I will reach for

one and the headache is abated. There is a facial nerve in the parotid

salivary glands. Perhaps the Salagen is flushing the glands or relieving the

pressure. Note that the white tongue stuff that many of us have may be,

according to my dentist, actually thick saliva. The dentist thought that the

substance could be a result of a Sjogren's type disorder.

[Guest guest]

Great new !!!!

Thanks for all the info too. I'm going to mention this to my doc when I see

her again in May!!!! I use Dapsone and I know it's caused a few problems

with my liver enzymes.

I'll keep my fingers crossed too that your health continues to improve!!!!!

>>>>>>>>>>>>>>>>>>>>>>>>>

I hope that this doesnt jinx things, but I thought that I would share with

you my positive test results from my recent treatment. Obviously, no single

protocol works for everyone, and RP may be caused by a variety of things,

but my improvement is dramatic:

My symptoms of RP include profound hearing loss, the head and muscle pains,

fevers chills etc. In addition, I suffer from a kidney syndrome called

proteinuria. This is the spillage of protein from your kidney into the

urine. Ordinarily urine may contain about 250 milligrams of protein over a

24 hr period. My kidneys got to the point where 7 grams of protein where

being spilled per day. The problem is that if you spill more than 3 grams a

day your kidneys start to die.

I of course have chased this for years with crummy doubting doctors before I

received the RP diagnosis by my hero, Dr. Trentham. The only drugs having

made any reaction: Cipro and Plaquenil. These are quinine based derivatives

and are antimalarials. They reduced the proteinuria and the pain symptoms

somewhat. They are used for arthritis, RP etc., but no one knows why they

work.

I discussed with Dr Trentham other antimalarials. Dapsone is used but can

have some adverse effects on the blood. So we tried another antimalarial.

CHLOROQUINE. This is one of the grandaddies of malarial treatment.

After 4 weeks on the Chloroquine, my proteinuria dramatically fell from 7

grams to 1 gram, reversing almost 10 years of damage. I have more energy,

less headaches etc.

Now a caveat: Dr. Trentham told me that he has used Chloroquine before

without the dramatic results. But in my case the results are absolutely

profound. And the side effects are not nearly so damaging as the immune

suppressants.

I may be sent to see an Infectious Disease expert in the next couple of

weeks. The results are so dramatic that there could be a possibility that a

living agent may be causing the effects of my RP. Mycoplasma respond to

treatment with quinine derivatives.

I will keep you posted.

Rock On.

BTW, the only other drug I am on is Salagen. Promotes salivation, it has

stopped my headaches. Whenever I feel the needle type pain, I will reach for

one and the headache is abated. There is a facial nerve in the parotid

salivary glands. Perhaps the Salagen is flushing the glands or relieving the

pressure. Note that the white tongue stuff that many of us have may be,

according to my dentist, actually thick saliva. The dentist thought that the

substance could be a result of a Sjogren's type disorder.