Re: my trip to see Dr. Franco

[Guest guest]

Connie, I am soooo glad to find someone who also takes CO Q10.Hope you're better soon.

Jo

my trip to see Dr. Franco

Hello's to Everyone :-)

It's me, Connie-who-can-never-seem-to-keep-up-with-the-posts :-) I'm back from my yearly Dr. Franco appointment in CA and I thought it was high time that I check in. A little background for those of you I have yet to " meet " ....I've been diagnosed by three different doctors with " might be RP " in addition to another connective tissue disease called dermatomyositis......both are in the RA family. My treatment for the past 4 years has centered on using antibiotics as described in Dr. Franco's website at www.thearthritiscenter.com (You can also look at other websites that detail the protocol at www.rheumatic.org www.immed.org and www.roadback.org (you'll even find our Dr. Trentham mentioned in the roadback site...small world!)

OK.....our flight was supposed to leave at 5:00am and arrive at 9:00am, which meant that we had to get up reallllly early that day. This, added to the fact that someone rang our doorbell in the middle night before our trip, meant that we had little sleep to get through a day of traveling and doctor appointments. Unfortunately, our 5:00am flight was cancelled and we were booked on other flights and didn't arrive in California until 30 minutes prior to my appointment with Dr. Franco......whew!! So, my brain wasn't functioning at top speed (whatever that is!) due to lack of sleep and traveling.

Anyway....I've been seeing Dr. Franco once a year for the past 4 years (wish I could go more often, but I have assured him that my local internist keeps a pretty good watch, while Dr. Franco adjusts my antibiotics as needed). Two years ago I mentioned to Dr. Franco that my ENT said that I might have RP, due to the cough that has plagued me since the beginning. At the time, Dr. Franco said that he doubted that it was RP, but at my appointment a few weeks ago, guess what?! HE suggested that my lingering cough and sensitive throat might be RP! I give up :-) My guess is that it is that much harder to pin down because the antibiotics have things pretty well under control, although I do wish the cough was completely gone. (It has been drastically reduced since the antibiotics, though) In any case, just to make sure.....I asked Dr. F if the antibiotic protocol was appropriate for RP as well as dermatomyositis. (I knew he would say yes, I just wanted to hear it :-)

So, there you have it. It's working for me and I certainly know that this treatment is not the everyday ordinary protocol for RA or any related disease.....including RP. I just hope to throw it out there for anyone who is interested in pursuing it.....and you definitely have to research it and ask for it (maybe even more than once :-)

One more thing.....Dr. Franco also believes that the antibiotics are only half of the solution. The other half is taking the proper supplements and vitamins. I have been off of my vitamins for the past 6 months....it's easy to forget them, especially when you are feeling so good.....and I have noticed that my skin on my face and ear is getting crusty in places. So, back to my fish oil, CO-Q 10, calcium, Vit C, E, magnesium....

Take care and hugs,

Connie H

DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

[Guest guest]

Connie,

I also take an antibiotic daily along with Cytoxan. Sounds like we take some of

the same vitamins too. This treatment plan has worked so well for me. After a

full year of it, I'm feeling so much better and hoping for a good report next

week after my follow-up appointments/tests at Mayo in Rochester. I'd love to

reduce or eliminate the Cytoxan, but the antibiotics may be for life.

I'm glad things are working well for you. We are some of the lucky ones. I

don't know how frequently rheumatologists attend symposiums on connective tissue

diseases, but I wish they'd share these findings.

Have a great Thursday,

(KC)

 

Hello's to Everyone :-)

 

It's me,

Connie-who-can-never-seem-to-keep-up-with-the-posts :-)  I'm back from my

yearly Dr. Franco appointment in CA and I thought it was high time that I check

in.  A little background for those of you I have yet to " meet " ....I've been

diagnosed by three different doctors with " might be RP " in addition to another

connective tissue disease called dermatomyositis......both are in the RA

family.  My treatment for the past 4 years has centered on using

antibiotics as described in Dr. Franco's website at <A

href= " http://www.thearthritiscenter.com " >www.thearthritiscenter.com</A> 

(You can also look at other websites that detail the protocol at <A

href= " http://www.rheumatic.org " >www.rheumatic.org</A>  <A

href= " http://www.immed.org " >www.immed.org</A>  and <A

href= " http://www.roadback.org " >www.roadback.org</A>  (you'll even find our

Dr. Trentham mentioned in the roadback site...small world!)

 

OK.....our flight was supposed to leave at 5:00am

and arrive at 9:00am, which meant that we had to get up reallllly early that

day.  This, added to the fact that someone rang our doorbell in the middle

night before our trip, meant that we had little sleep to get through a day of

traveling and doctor appointments.  Unfortunately, our 5:00am flight was

cancelled and we were booked on other flights and didn't arrive in California

until 30 minutes prior to my appointment with Dr. Franco......whew!!  So,

my brain wasn't functioning at top speed (whatever that is!) due to lack of

sleep and traveling.

 

Anyway....I've been seeing Dr. Franco once a year

for the past 4 years (wish I could go more often, but I have assured him that my

local internist keeps a pretty good watch, while Dr. Franco adjusts my

antibiotics as needed).  Two years ago I mentioned to Dr. Franco

that my ENT said that I might have RP, due to the cough that has plagued me

since the beginning.  At the time, Dr. Franco said that he doubted that it

was RP, but at my appointment a few weeks ago, guess what?!  HE suggested

that my lingering cough and sensitive throat might be RP!  I give up

:-)   My guess is that it is that much harder to pin down because the

antibiotics have things pretty well under control, although I do wish the cough

was completely gone.  (It has been drastically reduced since the

antibiotics, though)  In any case, just to make sure.....I asked Dr. F if

the antibiotic protocol was appropriate for RP as well as dermatomyositis. 

(I knew he would say yes, I just wanted to hear it :-)

 

So, there you have it.  It's working for me

and I certainly know that this treatment is not the everyday ordinary protocol

for RA or any related disease.....including RP.  I just hope to throw it

out there for anyone who is interested in pursuing it.....and you definitely

have to research it and ask for it (maybe even more than once :-)

 

One more thing.....Dr. Franco also believes that

the antibiotics are only half of the solution.  The other half is taking

the proper supplements and vitamins.  I have been off of my vitamins for

the past 6 months....it's easy to forget them, especially when you are feeling

so good.....and I have noticed that my skin on my face and ear is getting crusty

in places.  So, back to my fish oil, CO-Q 10, calcium, Vit C, E,

magnesium....

 

Take care and hugs,

 

Connie H

 

[Guest guest]

--- jhache@... wrote:

>

> Hello's to Everyone :-)

>

> It's me,

>

Connie-who-can-never-seem-to-keep-up-with-the-posts....I've

been seeing Dr. Franco once a year

> for the past 4 years (wish I could go more often>

Dear Connie, great to hear from you. I am glad the

antibiotic protocol seems to be working for you. I

did ask my rheumy about it and he was quite familiar

with it, and said it seems quite logical, so I am

bearing it in mind in case I have to stop taking

metho, plaquenil etc!!! Take care, and please

remember me to your family. Love Liz

__________________________________________________

[Guest guest]

>Dear Connie, great to hear from you. I am glad theantibiotic protocol seems to be working for you. Idid ask my rheumy about it and he was quite familiarwith it, and said it seems quite logical, so I ambearing it in mind in case I have to stop takingmetho, plaquenil etc!!! Take care, and pleaseremember me to your family. Love Liz<

Hi Liz :-)

We sure did miss you when we went to CA! My Mom, and I kept talking about how nice it was to meet you last year. This year my hubby stayed home, but our son came along for the ride...or better yet, to be the driver LOL It's a good thing the CA freeways don't scare him like they scared me! Next year, you and I will have to coordinate our calendars so we can be there at the same time.

Liz, that is wonderful that your rheumy is familiar with the antibiotic protocol! Whoohoo! I always hope you continue to do so very well, but in the event you need to change meds the antibiotics just might be the ticket. Another good thing, Dr. Franco's many years of expertise in fine tuning the dosages, etc. are a wealth of information available to you.

I'm glad to hear that you had such a great time in the UK! I hope you have all kinds of stories to tell us :-)

{{{Sending hugs}}}

Connie

[Guest guest]

Hi Jo :-)

I think CO Q 10 is one of Dr. Franco's favorites, that and olive leaf extract. Here's an article on the olive leaf: http://www.findarticles.com/cf_0/m0ISW/2001_May/73959334/p1/article.jhtml?term= (I think you have to add that "equals" sign...it won't highlight, but I think it's important)

One thing though....at last year's appointment I told Dr. Franco that my ears would sometimes (even every evening for a few months) get red...not painful, but just red - like they were embarrassed. He told me that CO Q 10 and olive leaf can cause that sort of thing. Of course, this was before he agreed with the RP idea.

Also, check with your doc if you are considering the olive leaf extract. I wouldn't want it to interfere with any of the meds you are taking now. Some docs say it is OK to boost the immune system and some do not. Dr. Franco is one who supports boosting the immune system, even with RP.

Love,

Connie

> Connie, I am soooo glad to find someone who also takes CO Q10.Hope you're better soon.> Jo

[Guest guest]

Hi ,

Oh it's so good to hear that you are doing well :-) Now you've

piqued my curiosity though. If you don't mind....will you tell me

which antibiotic(s) you are taking? and if your Mayo doctor

prescribed them? I have heard that there are some doctors at Mayo

who will use the antibiotic protocol, but I don't have any names.

As for the seminars...I've bugged my internist a lot to go to the

seminars that are put on by Dr. Trentham and the Road Back

Foundation. They have had two that I know of...but I'll keep

trying :-)

Yes, I will probably be on the antibiotics for life, but that's OK

with me. Don't forget to take a good acidophilus/bifidus every day,

hopefully with non-chlorinated water, but not at the same time as

your antibiotic.

Again, wishing you all that is good,

Connie H

>

> Connie,

>

> I also take an antibiotic daily along with Cytoxan.

[Guest guest]

Hi ,

Thanks so much for answering my questions :-) I am so glad you are

doing so well...I sure know what you mean about the progress being

slow and our patience being challenged at times.

The antibiotics that I take are Minocin and Biaxin. I don't know if

they are from the same family as the Bactrim DS or not, but something

must be working for both of us.

Good luck with all of your appointments next week....get ready to wow

your doctors with your progress :-) Please feel free to share my

info with them, as well. In fact, my story is at:

http://www.rheumatic.org/connie.htm I do need to update it though.

I think it still mentions that I was taking Zithromax, but that has

been replaced with Biaxin for the last year and a half.

Hugs to you,

Connie H

> Connie,

>

> It's good to hear from you too. Glad you're doing well. I take

Bactrim DS twice a day along with the Cytoxan.

[Guest guest]

Connie, thanks for the wonderful update. I'm so glad that you are still

doing so well. I'm still on the Biaxin and doing well too. I have been able

to decrease the Plaquenil to 200mg a day from 400mg. The pred is slowly

coming down.

I just got back from Stanford today and had a great report from my rheumy.

Except that the RP is now in my knees. LOL They want to add an

antiinflamatory but will wait til after the heart stuff to decrease the

bleeding.

Overall, I'm doing well and really can't complain.

so good to hear from you and thank you for all the sites.

hugs