Pls help Confused!!!!

[anikarobinson]

I’ve spent the past two weeks reading and devouring information provided on this website such as information packet for Dr and studies, testimonials, etc…. I also read through the arthritistrust.org website, specifically the how to get well section among others. They suggest two choices: (a) the Thomas McPherson Brown anti-mycoplasm approach, or (b) the Roger Wyburn-Mason (the Arthritis Trust of America) broad spectrum anti-microorganism approach. They recommend that you start with the Arthritis Trust of America (Wyburn-Mason) approach for several rational reasons:

(a) You’ll know in about six to twelve weeks whether or not it will work whereas, for the anti-mycoplasm approach you’ll know in about a year. If the broad spectrum anti-microorganism treatment doesn’t work, you can still try the anti-mycoplasm approach. The Arthritis Trust of America recommended anti-microorganism approach taking only six to twelve weeks will then require only about 2 or 3 visits to your assisting health professional. Whereas the anti-mycoplasm approach takes periodic visits for a year.

(b) The Arthritis Trust of America anti-microorganism approach is cheaper.

My daughte who is 13 was diagnosed with Linear Scleroderma a yr and a half ago. She was put on medicine which made her cheeks/face really big (forget name) and it stopped it from spreading after 6 months of use. She was in remission roughly 6 months and now it went from her hand/wrist area all the way up her right arm, down her right side of her back/half way down and just last week we found spots on her right leg. She was put oncellcept 500mg and Naproxen 275 mg but it continued to spread so now she’s still taking those drugs but Dr. added monthly infusions of Solumedrol 1,000mgs. Her skin is now getting really hard, very shiny, 3 of her fingers are curled and she had to quit playing cello. Her skin is getting really dark spots, fingers and arm are loosing muscle and she can’t sleep and has some pain. She was also diagnosed with Raynaud’s Phenomenon in December. We were told meds are not really working, her disease is progressing rapidly and there’s no other medicine to try. She does P.t. and he recommended ultra violet light therapy. Has anyone tried it???

She has an appointment in 13 hours with her specialist and I’m not sure which one to ask him to start her on. What’s your personal opinion, which one would you guys recommend, has anyone tried Roger Wyburn treatment? The good thing is that her specialist shares an office with a DR recommended from Road Back Foundation that does AT. Money is very tight since we have expensive copays plus we pay 10% of all medical bills. Dr Wyburn seemed enticing since results mentioned can be seen in 12 weeks and it states meds are cheaper. I would also love to hear from other parents with young children who have gone through this. I live in Arizona if anyone is interested in meeting up or just chatting.

[Rosey UK]

Hi,
I’m so sorry to hear about your daughters condition. It’s really confusing and worrrying to have to choose the right treatment for her.
I’ve only heard of Dr Thomas M Brown’s treatment plan, and it can take some time to start recovery if it suits. The American one you mention must be a later treatment plan ( I will have a look myself later) Can you not ask more questions on their website?

I’m sorry i’m not much help, but I could tell how anxious you are and just wanted to reply.
I hope you soon get her on the right track to recovery. I know others on here RB will be very encouraging and supportive as there are a lot of people here in remision. Also changing our diets can help too.
God Bless
Rosemary

[PhilC]

Hi,
@anikarobinson wrote:

I also read through the arthritistrust.org website, specifically the how to get well section among others. They suggest two choices: (a) the Thomas McPherson Brown anti-mycoplasm approach, or (b) the Roger Wyburn-Mason (the Arthritis Trust of America) broad spectrum anti-microorganism approach. They recommend that you start with the Arthritis Trust of America (Wyburn-Mason) approach for several rational reasons:

The Wyburn-Mason protocol seems very aggressive. For a person as ill as your daughter seems to be (based on your description), I believe that protocol could be dangerous for her.

I also think that the arthritistrust.org web site has misrepresented Dr. Brown’s protocol to some extent. The biggest cost of Dr. Brown’s protocol, as far as I know, is IV clindamycin, but that is not absolutely essential. Instead, some people take oral clindamycin, some get IM (intramuscular) injections, and some people don’t even take clindamycin.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[anikarobinson]

Thank you for your replies. I just got back from the Rheumatologist specialist. All her bloodwork came back fine, however since her last infusion she has had her skin tighten a lot more. New shiny bigger spots have appeared and he does believe the spot in her leg is scleroderma but can’t say for sure unless it spreads or becomes bigger. He said he was hoping to do 3 infusions total but since the 1st one did not work, he’s just going to try one more (my daughter did not sleep the first 3 days and since then she’s averaged between 3-4 hrs of sleep every day) so he said he’d try it only one more time due to the lack of sleep and he’s hopeful that it will work. He said he has heard of low antibiotic therapy but only in adults. He said he would speak to the DR in his office to see if he’s tried it. He said most of the people who have been on it are not only adults but they have RA. He said since my daughter has Linear scleroderma and she’s 13 that he doesn’t think it would work for her but that he was willing to read the packet I left him and he’d speak to the doctor. Her next infusion is in 2 weeks. I would still like to know if anyone has tried Dr. Mason’s protocol and is there anyone here who’d had a child with Lenear Scleroderma who has been on Dr Brown’s AT? if so, what were the result/side effects? Thank you in advance for your help.

[PhilC]

Hi Anika,
@anikarobinson wrote:

He said he has heard of low antibiotic therapy but only in adults. He said he would speak to the DR in his office to see if he’s tried it. He said most of the people who have been on it are not only adults but they have RA. He said since my daughter has Linear scleroderma and she’s 13 that he doesn’t think it would work for her but that he was willing to read the packet I left him and he’d speak to the doctor.

It sounds to me like that rheumatologist may be looking for an excuse not to try it. There is no logical reason why the treatment would be ineffective, or less effective, for children.

@anikarobinson wrote:

Her next infusion is in 2 weeks. I would still like to know if anyone has tried Dr. Mason’s protocol and is there anyone here who’d had a child with Lenear Scleroderma who has been on Dr Brown’s AT? if so, what were the result/side effects? Thank you in advance for your help.

The antibiotic protocol typically used for the treatment of scleroderma is 100 mg of minocycline twice a day. That is a higher dose than the pulsed dosing that Dr. Brown used. However, some people are unable to tolerate that dosage and end up reducing their dose to 100 mg of minocycline MWF. Some very sensitive people may have to reduce their dose to 50 mg of minocycline MWF.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[Cheryl F]

Hello:

I am just logging on and have quickly read this thread. This post will be short as I am making it from my smart phone.

First, I am not a medical professional, but the list of symptoms you mention make me very concerned that your daughter’s scleroderma may be more than skin deep. Raynaud’s is a systemic issue of the vascular system. Has she had the antibody testing that might be an indicator of systemic disease? I am no expert on linear mophea, but I know that skin thickening, finger contractures and Raynaud’s are indicative of systemic scleroderma.
My suggestion is that you consider a second opinion from a scleroderma specialist rheumatologist.

Regarding the other antibiotic protocols, I am aware of these protocols, but not well informed about any of the details. I have never heard of any type of antibiotic protocol working as quickly as you state this other program promises. If it is true, sign me up! I met one of the principals of the Arthritis Trust, we spoke about Dr. Brown’s AP and I didn’t get the sense that the two protocols were very different. I am anxious to learn more.

Regarding other children who have successfully used AP, here is a link to a testimonial: https://www.roadback.org/index.cfm/fuseaction/community.display/display_id/496.html

My daughter was diagnosed with limited systemic scleroderma at age 16. Her symptoms were progressing rapidly and included documented lung involvement. She has been in remission for four plus years.

Cheryl
Please let me know if I can answer any question for you, I am happy to chat by phone if you like.

[PhilC]

Hi Cheryl,
@Cheryl F wrote:

Regarding the other antibiotic protocols, I am aware of these protocols, but not well informed about any of the details. I have never heard of any type of antibiotic protocol working as quickly as you state this other program promises. If it is true, sign me up! I met one of the principals of the Arthritis Trust, we spoke about Dr. Brown’s AP and I didn’t get the sense that the two protocols were very different. I am anxious to learn more.

The Wyburn-Mason protocol uses (among other things) a bactericidal antibiotic such as metronidazole (Flagyl) or tinidazole (Tindamax). The protocol is probably safe (though it may be very unpleasant) for people with arthritis who don’t have any systemic involvement. However, for seriously ill people and people with systemic involvement, it may not be safe. The problem is that a bactericidal antibiotic is likely trigger the sudden death of large numbers of infected cells, which could lead to organ failure.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[Cheryl F]

This sounds exactly like the combination antibiotic protocol advanced by the website cpnhelp.org. The doctor we see uses this combination protocol and both my husband (RA) and my daughter (SD) have used combo antibiotics including regular pulses of Flagyl. My hubby started on Minocin alone for about six weeks, his symptoms held stable and maybe improved a little for that first six weeks while he waited for his first AP rheumy appointment, then he started Flagyl and he got better pretty quickly.

So this protocol sounds pretty standard, but the claim of a “cure” in a short period of time sound not credible. I know two of the doctors who use this combo AP and I have never heard anyone say that it was fast.

Also, while the MIRA and Harvard SD trials were conducted with Minocin alone, It is well known that Dr. Brown routinely used combinations of multiple and various antibiotics.

That’s my $.02!

Cheryl

[PhilC]

Hi Cheryl,
@Cheryl F wrote:

This sounds exactly like the combination antibiotic protocol advanced by the website cpnhelp.org.

I am familiar with those particular antibiotic protocols, and there is no comparison. The Wyburn-Mason approach is quite different. The Stratton and Wheldon protocols described at cpnhelp.org start with a bacteriostatic antibiotic (e.g., azithromycin, doxycycline) and add pulses of metronidazole or tinidazole later on. The Wyburn-Mason protocol starts with a 5-nitroimidazole (metronidazole, clotrimazole, tinidazole, nimorazole, or ornidazole) plus allopurinol or furazolidone. Since it starts off with a bactericidal antibiotic, it is a more aggressive protocol.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[Cheryl F]

Phil:

Thanks for enlightening me on this other AP protocol. It does sound aggressive. I have never really heard from anyone who has done this specific aggressive protocol but would be really interested to hear for people who have done this. Does Arthritis Trust have an active discussion forum so you can chat with folks who ate doing this protocol?

Cheryl

[PhilC]

Hi Cheryl,
@Cheryl F wrote:

Does Arthritis Trust have an active discussion forum so you can chat with folks who ate doing this protocol?

I don’t know. If they do, I’ve been unable to find it.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

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