Getting AP Out of the Closet

[sjess]

I totally understand where my doc is coming from when he tells me AP won't work. He has a responsibility to me to only recommend treatments that have been proven to be effective. So my question is, as people who know AP is effective (those who have seen improvement and remission after using AP) and those of us who believe their stories, how can we get the word out about AP so that it is not considered just anecdotal evidence.

Does anyone know what is involved or what would have to be done? I thought I read a post that said that AP is an approved treatment for the rheumatic diseases. If that is true, do we just need to make rheumatologist and GPs aware of this with letters and/or emails? Right now I'm at home basically sitting on my behind and I can type up letters or emails if that is what it takes.

What do you guys think?

Sharon

[sjess]

Just had an idea. I am going to Ida Grove to get my IVs August 9. I can see if Dr. S will be available for me to talk to him. I could tell him that we want to send out a letter or email to doctors about AP and see if he would let me interview him or if he would write something about his experiences himself that we could send to doctors. We could write all the other AP docs and see if they will help sharing statistics, stories, etc. Then include with that the notice about it being an approved treatment. Maybe that would work?

RBFV edit to remove physician's full name as per forum guidelines. Thank you for your understanding.

[Lynne G.SD]

Hi Sharon;
     I think that all of us have been banging our heads against the same wall for years.So far only word of mouth has worked.Most AP  doctors are just too overwhelmed with work to even think of doing statistics.I do know that Dr T.Marshall(http://www.marshallprotocol.com ) is doing a lot of work and running double blind studies now.He has conferences all over the place.You can read about them on his site.He is directly challenging the old school medical profession and of course…hitting his head against the same wall.Maybe in time there will be so many hits that it will crumble.
     So,my sweet,how are you doing these days? Any little rays of sun???My sister has MCTD and Lupus and could not take regular AP but is now in remission with MP
                        xxxxxLynne

[Maz]

[user=1956]sjess[/user] wrote:

Just had an idea. I am going to Ida Grove to get my IVs August 9. I can see if Dr. S. will be available for me to talk to him. I could tell him that we want to send out a letter or email to doctors about AP and see if he would let me interview him or if he would write something about his experiences himself that we could send to doctors. We could write all the other AP docs and see if they will help sharing statistics, stories, etc. Then include with that the notice about it being an approved treatment. Maybe that would work?

Hi Sharon,

Well, this is a question that is oft-repeated here as you might imagine and your desire to spread the word is so admirable.

If this helps, Dr S already has a chapter in The New Arthritis Breakthrough by Henry Scammell where he discusses his experience of using AP for his rheumatic patients and and has also written an article on the efficacy of AP on the main site:

https://www.roadback.org/index.cfm/fuseaction/education.display/display_id/123.html

In all honesty, the best testimony of AP working is to get one's self into remission first to be a living emissary, so to speak. To try to present the case to physicians for the efficacy of AP is probably a fruitless cause until a person can affirm that they are in clinical remission. This is why testimonials are so important…although anecdotal, these provide the most powerful evidence for AP working other than double-blind, replicated studies, which no one wants to put money into as there is nothing to be gained (profit-wise) from studying off-patent, cheap drugs.

In the past, Road Back would attend ACR meetings and would rent booth space, manned by volunteers, to distribute informational pamphlets to the visiting physicians. Conferences such as these are probably the optimal way to get info to treating physicians. However, in recent years, donations to fund these sorts of events have plummetted and as these events can cost in the thousands to transport volunteers to these locations, for hotel costs, to print material for distribution…and just to have volunteers willing to offer their time freely attend these events….takes a huge amount of organisation and funding. Last year, Road Back attended several different conferences…one in San Fransisco, one in NC and one in Long Island, so this networking still goes on. However, the current main focus for Road Back, a web and donation-based organisation, is to accumulate enough funds to update the main site which is in need of a good overhaul as the foundation's main outreach tool to the general public. This is absolutely vital right now to bring the information on the main site up to date in terms of current research for physicians interested in the therapy.

So, as a fellow patient/volunteer of RBF, my best suggestion to anyone interested in preserving the goal of the foundation to get the word out to patients and physicians about the efficacy of AP for rheumatic disease is to support this goal either in fund-raising efforts or in direct donations. RBF would love to continue offering financial support in the shape of grants to physician/researchers in their efforts to study infectious causes for rheumatic diseases, or in studies such as MIRA or the Minocycline in Early Diffuse Scleroderma trial, but these goals simply can't be acheived without adequate funding. Until such time as irrefutable scientific studies prove the efficacy of AP for all rheumatic diseases, it must remain in the realm of anecdotal evidence and in the few studies currently available. Physicians like evidence-based medicine and with newer, more lucrative pharmaceuticals coming out into the rheumatic disease market every day with double-blinded studies to back them, AP will remain a “poor cousin,” until more tangible research becomes available.  

Hope that helps to explain a bit, Sharon? 🙂

Peace, Maz

[sjess]

Thanks Maz, I understand a lot better now. I appreciate you taking the time to explain the situation.

RBFBB OOps! Sorry about leaving the name in!

Lynne,

Thanks for your response. I am getting along okay. I am looking forward to getting AP IVs Aug 9-13 in Ida Grove. I hope that jumpstarts my improvement. I have been feeling a little better the past few days, but that could just be the ups and downs of MCTD. 😕  Hope you are well.

Sharon

[aynurrzepa]

Hi

Just been to doctor's 2 days ago to get my doxy prescription refilled. My doc is away on leave so this was a new one. He sarted the old well known saga how I am wasting my time and that this treatments is not recommended in medical records and there is only one study on SD using AP that has taken place and the results are not sufficient etc. but in the end after some disucssion he said he woudl not really be surprised if such a simple and cheap med as tetra abx is indeed the way to go. I told him then you will be the 3rd doctor I will prove to that it works. And i think this is the only way of getting the evidence around. As it stands now, the pharma giant seems unbeatable! I wish Dr. M succeeds in his studies and conferences sooner than later:(

Aynur

[zoofie_85]

Hi , I hope you will answere!

As soon as i go from 10 mg pred to 1,5 mg pred, i get swelling and pain…. Im taking 1 pill tetra am and pm MWF. Its iching a lot! have eating it now for about 3 weeks… nothing yet.. Do u think I need to change someting? the tetradose? I really need to reduce my pred :doh:

 

thank you..

[lynnie_sydney]

[user=2526]zoofie_85[/user] wrote:

Hi , I hope you will answere!

As soon as i go from 10 mg pred to 1,5 mg pred, i get swelling and pain…. Im taking 1 pill tetra am and pm MWF. Its iching a lot! have eating it now for about 3 weeks… nothing yet.. Do u think I need to change someting? the tetradose? I really need to reduce my pred :doh:

 

thank you..

zoofie – you really would benefit from reading more about the way AP generally works. I understand that the language problem will make it difficult for you but it will  help you understand a lot more about this approach to treatment. It has been said before that results generally are not seen for about 6 months. 

There is no-one who has reduced their pred without pain. If you type in 'weaning pred' to the search box above, you can read lots of posts about this. Lynnie   

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[Lynne G.SD]

Zoofie,my sweet,   Please tell me you did not drop your prednisone fro 10 to 1.5 mg all at once.You could do some very serious damage to your adrenal glands.It took me 6 months to go from 5mg to 0.Every second day I would use a nail file to rub off a tiny bit from one pill until I was taking only 1/4 pill and stayed there for a few weeks before stopping.Each time I lowered the dose the pain would come but I toughed it out.I replaced the pred with MSM and that worked quite well.I took 2 teaspoons a day.
            Lynne

[zoofie_85]

Ok… well i knew, its just soo hard:(

 

today im having aaaaaa lot of musclepain!! feels like i have worked out  alot!! – i havent … did any of u get that??

In2002 when i got sick in mctd i felt this musclepain 😕

please answere im so gratful for your answeres

[zoofie_85]

[user=2526]zoofie_85[/user] wrote:

Ok… well i knew, its just soo hard:(

 

today im having aaaaaa lot of musclepain!! feels like i have worked out  alot!! – i havent … did any of u get that??

In2002 when i got sick in mctd i felt this musclepain 😕

please answere im so gratful for your answeres

I meant 7,5 not 1,5

[zoofie_85]

[user=31]Lynne G./SD[/user] wrote:

Zoofie,my sweet,   Please tell me you did not drop your prednisone fro 10 to 1.5 mg all at once.You could do some very serious damage to your adrenal glands.It took me 6 months to go from 5mg to 0.Every second day I would use a nail file to rub off a tiny bit from one pill until I was taking only 1/4 pill and stayed there for a few weeks before stopping.Each time I lowered the dose the pain would come but I toughed it out.I replaced the pred with MSM and that worked quite well.I took 2 teaspoons a day.
            Lynne

Lynne.. what is msm? i have a lot of musclpain, and im afraid… =(

[Lynne G.SD]

Hi Zoofie;
      I am afraid that I do not understand you. You say”O.K. well I knew it was so hard”   what is so hard.Taking prednisone or taking AP?
MSM is Methyl Sulphanil Methane  and it is basically a sulphurated compound and can work wonders for pain.Just google   “what is MSM” and you will find lot of info as well as advertisements.
     Having MCTD is going to be much much harder than you realise,especially if you have a lot of SD symptoms.There are no traditional meds that can fix it and that is why people on this board have turned to AP.It can take a couple years to feel better so we just learn as much as possible and get on with our lives.
               Lynne

[zoofie_85]

I wrote- Ok… well i knew, its just soo hard:(
and by that i meant… that i think everything is hard with this mctd.. i have had it seence 2002 soo i know its hard.. and i think its hard not beeing abel to reduce pred because im afraid of diabetic,,

And i dont understand why you saying:Having MCTD is going to be much much harder than you realise, I know that and thats why i think everything is hard. And i dont want to go around and think that it will be hard.

Dont know what SD symptoms is…

thanks!

[Lynne G.SD]

Hi zoofie;
    Now I think I understand you.It is HARD when neither of us is speaking our language. ha ha ha;
    What I meant about MCTD is hard  is that you are just at the beginning of the disease.Most people with MCTD either have Lupus or Scleroderma symptoms with it.They usually show up after a few years.My sister has MCTD with Lupus overlap.I just have plain old SD.
   I know you are scared about diabetis and prednisone.You will eventually have to get off of the pred but must only reduce it in tiny amounts over a period of several months or you will damage your adrenal glands.I was on pred 5mg for a couple years.I now have osteoporosis and very thin skin.If I just rub it hard it will tear because of it.I wish I had known before what it would do to me.If I had to do it again I would take methotrexate at the lowest dose possible and not the pred.By the way,after 2 years the pred did not work anymore.

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