Introduction =)

[Guest guest]

Hello Fellow CMT'ers!

My name is and I am 27 from Philadelphia. I have been lurking FOREVER so

I finally decided to say hello.

I was dx'ed with CMT almost 6 years ago. My oldest brother was dx'ed first,

then me and then my mom about a year after that. My mom just passed away a

couple of weeks ago from Lung Cancer. So it kind of bothers me that she had to

deal with 2 horrible diseases. But that is another post!! LOL

I run the Philadelphia Area CMT Support group and I have been for about 3 years

now. I started it all by myself in 2001 with the help of my awesome neurologist

who is at UPEnn. The group has been a huge success and is the best thing that I

have ever done in my life. I am so proud of it.

I would say that I have CMT pretty severe and have been on Disability since

1998 when I was 22. I deal with horrible chronic pain everyday from the CMT and

have been on painkillers for that. They don't work *that* great, but it is

better than nothing.

I have a scooter and I use that when I go out shopping. I can't stand or walk

for long periods of time. I have some tremors in my hands when I work them too

much. I had a triple arthrodesis on my left ankle in 1999. I thought it would

be the answer to my pain and problems with my braces, but it wasn't. Within 2

months after the surgery, I developed arthritis in the top of my foot, under

the toe area. And that pain is TERRIBLE. And my ankle pain is worse than what

it was before the surgery, so I don't think I will be having my right foot

done. And I am still wearing braces which I hoped the surgery would eliminate.

Guess not. =)

Well I can't wait to contribute to this group. It is so wonderful to be able to

talk to people who are going through the same things as you. That is why I love

my group so much!

If anyone is in the PA or NJ area and want info on my group, feel free to email

me. The next meeting is Saturday, May 8th.

Talk soon everyone!

~~*~~

[Guest guest]

,

Cooky is referring to the website that has all the details of the

antibiotic protocol many of us here are on

www.rheumatic.org

Take care,

Ute

[Guest guest]

Hi ,

Welcome to our little club & sorry you need to be a part of it!!

You need to remember that tests often come back negative which doesn't mean you

don't have one of our dreaded diseases, ie RA, PRA or whatever & I can tell you

having been on forums for the past 3 yrs that it is not unusual for some women

to develop these diseases just after pregnancy so you are not alone. 

Interesting that your symptoms eased when taking amoxill - that would suggest to

me a lyme factor is there somewhere.  (my Dr uses penicillin as a first line of

defense against lyme).

I am assuming you are in USA or over there somewhere, the normal meds used in

AP

over there is minocycline (a tetracycline) but if you have Lyme it is a

slightly

different way of using the abx, (ie for RA it is slow & gently for Lyme it is

hitting it hard) may I suggest your best bet would be to see a LLMD who offers

AP as a treatment path, I am sure someone will jump in here & be able to provide

you with a list of suitable doctors in your neck of the woods.

Good luck,

Maz

________________________________

From: ksuebach <ksuebach@...>

rheumatic

Sent: Fri, 11 March, 2011 6:09:52 AM

Subject: rheumatic Introduction =)

 

Hi everyone! I just wanted to introduce myself, my name is , I have yet to

be diagnosed with anything, other than something autoimmune. My symptoms began

last summer, 2 months after I gave birth to my second son. It started as extreme

flu like symptoms and then severe muscle pain and stiffness, especially in my

forearms, they would throb after any kind of activity. My first thought was

Lyme, but two tests came back negative. Other testing for Lupus, Scleroderma,

and RA came back negative as well. Nothing was helping my symptoms, not even

pred. Still convinced it wasn't Lyme, I practically begged my Doc for an

antibiotic to no avail. However, I was able to get an rx for Amox. from a friend

and within a week of taking it my muscles loosened up and the pain and stiffness

were waning. I was feeling fantastic, but then around Christmas last year my

joints started bothering me. I have pretty severe pain in my hands especially.

So after some online research I have found this group and AP.

I am wondering about the diet that I've seen people posting about, as well as if

anyone could guide me to the correct dosage and brand of antibiotic. Any help

would be greatly appreciated!

Thanks so much!

[Guest guest]

Bonnie, here's an email last month about AP and RA that you may not have seen:

sally

Minocyline is indeed listed as a disease-modifying anti-rheumatic

(DMARD) drug in " Guidelines for the Management of Rheumatoid

Arthritis, 2002 Update, " of the American College of Rheumatology.

These guidelines can be downloaded an no charge from

http://onlinelibrary.wiley.com/doi/10.1002/art.10148/pdf

I suggest that you download and print out this 20-page document. Once

this hefty document is open on your computer, do a word search on

" minocycline " .

Minocycline was also included as a DMARD by the American College of

Rheumatology in Guidelines published in 2008. Sorry, I don't have a copy.

The following are excerpts from the excellent article " The Use of

Minocycline in the Treatment of Rheumatoid Arthritis " by Beth A.

Malley, RN, CCRC.

" While minocycline is an approved antibiotic, it's not Food and Drug

Administration (FDA) approved for use with RA. Physicians

specializing in rheumatology are within their scope of practice when

prescribing minocycline to treat RA, although it's not a common

practice (Sheil 2008). Minocycline is effective in about 60% of those

who use it for RA, although without FDA approval or official

guidelines, some physicians remain skeptical, waiting for more

evidence related to dosage and long-term use of minocycline (Eustice

2006). As research continues and treatment guidelines change to

include the use of minocycline as an acceptable treatment for mild

RA, physicians may be more comfortable with prescribing this

antibiotic to treat mild rheumatoid arthritis (Eustice 2006).

Since the generic form of minocycline is available, it may never

become FDA-approved for treating RA. This often happens when a

medication becomes available in a generic form, because the testing

and sale of the drug does not become " commercially viable " for

companies to pursue (The Road Back Foundation 2008). "

For the full article, please see

http://www.encognitive.com/files/The%20Use%20of%20Minocycline%20in%20the%20Treat\

ment%20of%20Rheumatoid%20Arthritis.pdf

(make sure to enter the entire URL)

Sincerely, Harald

At 10:54

rheumatic Introduction =)

Hi everyone! I just wanted to introduce myself, my name is , I have yet

to be diagnosed with anything, other than something autoimmune. My symptoms

began last summer, 2 months after I gave birth to my second son. It started

as extreme flu like symptoms and then severe muscle pain and stiffness,

especially in my forearms, they would throb after any kind of activity. My

first thought was Lyme, but two tests came back negative. Other testing for

Lupus, Scleroderma, and RA came back negative as well. Nothing was helping

my symptoms, not even pred. Still convinced it wasn't Lyme, I practically

begged my Doc for an antibiotic to no avail. However, I was able to get an

rx for Amox. from a friend and within a week of taking it my muscles

loosened up and the pain and stiffness were waning. I was feeling fantastic,

but then around Christmas last year my joints started bothering me. I have

pretty severe pain in my hands especially. So after some online research I

have found this group and AP.

I am wondering about the diet that I've seen people posting about, as well

as if anyone could guide me to the correct dosage and brand of antibiotic.

Any help would be greatly appreciated!

Thanks so much!

[Guest guest]

I'm sure I will Eva, especially because I live alone. Consulltation with hip

doc March 31 at Univ. of Iowa Hosp (about 60 miles from me) It took too months

to get apt......the guys busy and I so hope I don't have to wait too long for

surgery. The doc is specialist in hip surgery (has patent on a new improved

type of hip) reconstruction surgery and RA. They don't have rehap at the hosp,

so hopefully I can come back to Fairfield and stay in rehap here. Very nice

quiet professional hospital....plus friends could bring me type of food that I

eat.....although a bowl of red jello with marshmellos sometimes sounds pretty

good! sally

rheumatic Introduction =)

Hi everyone! I just wanted to introduce myself, my name is , I have yet

to be diagnosed with anything, other than something autoimmune. My symptoms

began last summer, 2 months after I gave birth to my second son. It started

as extreme flu like symptoms and then severe muscle pain and stiffness,

especially in my forearms, they would throb after any kind of activity. My

first thought was Lyme, but two tests came back negative. Other testing for

Lupus, Scleroderma, and RA came back negative as well. Nothing was helping

my symptoms, not even pred. Still convinced it wasn't Lyme, I practically

begged my Doc for an antibiotic to no avail. However, I was able to get an

rx for Amox. from a friend and within a week of taking it my muscles

loosened up and the pain and stiffness were waning. I was feeling fantastic,

but then around Christmas last year my joints started bothering me. I have

pretty severe pain in my hands especially. So after some online research I

have found this group and AP.

I am wondering about the diet that I've seen people posting about, as well

as if anyone could guide me to the correct dosage and brand of antibiotic.

Any help would be greatly appreciated!

Thanks so much!

[Guest guest]

Thanks Sally, I was going to send this too

Eva

From: ehgooding <ehgooding@...>

Subject: RE: rheumatic Introduction =)

rheumatic

Date: Thursday, March 10, 2011, 7:57 PM

Hi ,

I don't know what Lyme tests were done on you but I recommend the Igenex

Western Blot test. I too had 'negative' results for Lyme's until I took

that test. If you told your doctor that the antibiotics helped you and he

still wouldn't prescribe them then it is time to find a new doctor! If you

will tell me the state you live in I will see what doctors are in your area

that are receptive to the antibiotic protocol (AP.) El

_____

From: rheumatic [mailto:rheumatic ] On Behalf

Of ksuebach

Sent: Thursday, March 10, 2011 2:10 PM

rheumatic

Subject: rheumatic Introduction =)

Hi everyone! I just wanted to introduce myself, my name is , I have yet

to be diagnosed with anything, other than something autoimmune. My symptoms

began last summer, 2 months after I gave birth to my second son. It started

as extreme flu like symptoms and then severe muscle pain and stiffness,

especially in my forearms, they would throb after any kind of activity. My

first thought was Lyme, but two tests came back negative. Other testing for

Lupus, Scleroderma, and RA came back negative as well. Nothing was helping

my symptoms, not even pred. Still convinced it wasn't Lyme, I practically

begged my Doc for an antibiotic to no avail. However, I was able to get an

rx for Amox. from a friend and within a week of taking it my muscles

loosened up and the pain and stiffness were waning. I was feeling fantastic,

but then around Christmas last year my joints started bothering me. I have

pretty severe pain in my hands especially. So after some online research I

have found this group and AP.

I am wondering about the diet that I've seen people posting about, as well

as if anyone could guide me to the correct dosage and brand of antibiotic.

Any help would be greatly appreciated!

Thanks so much!