Re: Trentham tidbit (tring to send this one more time)

[Guest guest]

Hi :-)

>I just came back from my PCP and

everything is looking good. He is really happy with the Biaxin and

how it is

working.<

It was so good to hear that you're doing well....all things

considered :-) I can imagine that your PCP must be pleased with your

results.......yeah!! It's just fine that he doesn't want to add the

Minocin right now.....I guess we have to let the guy be the doctor

some of the time LOL I really respect the fact that he is willing to

look into new things for you and then use his own best judgement.

That's all we can ask. One thing he might want to do is to talk to

other doctors who are using the antibiotic protocol (AP) for

rheumatic patients. He can do this via the rheumatic.org

webpage......it would probably help if you could give him the exact

link, and it's http://www.rheumatic.org/docmail.htm I notice they

are still using the egroups instead of the yahoogroups......I think

(hope) they both still work. You could also give him some info from

Garth Nicolson's webpage on mycoplasma www.immed.org

Try not to worry about the little scares......usually people on the

AP notice that

they will feel pretty good, if not almost " normal " for increaqsing

periods of time....then, they will

notice their symptoms will return, but it is only temporary.

Eventually, they notice

a pattern of increasing amounts of the good days, mixed in with a

smaller amount

of the bad days.......until you get mostly the good days. It's a

three steps forward,

one step back kind of thing.

That sounds so similar to mine these past 4 years. When I first got

sick, it was happening about ever 3-4 months

and lasting 2-3 days. Now, it happens maybe once or twice a year

and lasts for part of a day. ...and I'm not even

official in the RP department......so who knows? All I know is that

it hurts like heck!

Good! The PB-8 (acidophilus/bifidus) will really go a long way

towards helping the AP to work effectively. If you get

a yeast/candida infection, the AP really gets slowed down. I've had

to take Nystatin off and on, but keeping off the sugar

would be even better. Dr. Franco put me on CoQ10 when I first saw

him in April of '98. I took it up until my last

appointment with him this past February. I told him that my ears

were getting that warm/hot reddness every evening.

He's not convinced that I have RP for sure, and he said that the

CoQ10 can cause 'flushing' so if you notice an increase,

that might be a cause (it's soo hard to figure out sometimes).

Anyway......I think the CoQ10 is supposed to be good for

our hearts and other muscles, so hopefully, you can continue taking

it. (Dr. Franco put me on it because of my

dermatomyostis....a rheumatic muscle and skin disease.)

Whhooohoooo!

<(Except for my feet, and I go for

the MRI results next week on them)>

Hopefully they will get better and better, too! I know someone who

has tried prolotherapy......have a look

at http://www.ongleyonline.com/ It has to be done after you're in a

long period of remission if you have

RA.....so I would guess the same might apply to RP? Also, Dr.

Mercola has been mentioning NST therapy for

pain. He's seen it work in a variety of cases

http://www.mercola.com/forms/nst.htm but I don't have any

concrete data on it.

:-)

You're welcome....I'm happy to share everything I have and know

you'll see those improvements come

more and more. Just remember those three steps forward, one or two

back ..

Oh , I'd hug you first! :-)

From my experience and that of many others, I think you have an

excellent chance of staying with

the course and seeing many long lasting improvements.

Take care and lots of hugs to yoou! Connie H.

(sorry this post has such wierd spacing and things........my driving

skills are sort of lacking ;-)