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debbie y
Member in Phase 3
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Posted: Wed Aug 2nd, 2006 17:01 |
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I need some information from you fellow MP'ers. I continue on my ph 2 and doing well, however, my 20 yr old son has just been dx'd with RA. With all of my autoimmune problems, RA is not and has not been on the scene. I would like to hear from those of you with RA who are on MP and what your results have been. You can PM me. The dr. has put him on prednisone for the swollen joints and pain and of course, he is feeling fine right now. The dr. has already brought up Plaquenil and Methotrexate. You know with me being so far a "successful MP'er", these meds are making me cringe. When we meet with doc again , I will take MP info, my son needs to get vit D tests done first, right? This rheumatologist is not going to agree, I know him too well. And, my doc will not treat any others at this time, and he's not a rheumatologist. I guess I'll need some names of some rheumatologists who are MP friendly anywhere in OH, KY, or WV.
I feel that if my son can get the vit d tests first, then we can go from there but I sure would like to hear from others. Then, I could have more to show that it is working for those with this particular TH1 disease.
Thanks for any help you can share, by the way, he tested neg for diabetes and celiac sprue and has been healthy otherwise.
debbie y
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Sarcoidosis/lungs '04' DM type 1 celiac sprue Insulin via pump synthroid,lunesta Ph1Feb06 Ph2Jun06 Ph3Dec06, 25d 7.1, 1,25 22.9 on 2/23/09
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Chris
Moderator
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Posted: Wed Aug 2nd, 2006 17:23 |
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Not exactly on topic, but ....
After reading the info on familial aggregation with sarcoid, I browbeat my wife and one son into getting the vit-D tests. Both were strongly postive. Both underwent follow-up testing and proved positive for Lyme and other things. My wife also has a high Rheumatoid Factor, and the current doc is now conflicted about whether to treat as Lyme or RA. We are looking to MP to fix both.
I'd bet that your son also has one or more of the other things tested with lyme - Babesia, Bartonella, various mycoplasma ... etc. Do not stop looking just because you have a RA diagnosis. Evidence of a infectious problem
might make it easier to convince a new doc to use the MP
first and treat the RA symptoms as just symptoms of
an underlying infection.
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sarcoid diagnosed 1991, probably started 1983
D25/1,25: Mar04 17/80, Sep04 12/50, Nov04 8/23, Jan05 9/39 May05 6/27; in phase3; fevers, muscle pain, tinnitus, depression, mental-fog, IBS, carpal-tunnel, fatigue, osteopenia
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debbie y
Member in Phase 3
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Posted: Wed Aug 2nd, 2006 17:34 |
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Chris,
Thanks for your quick response. I really appreciate the info. I had no idea to check for the Lyme, etc. I really want to cover all possibilities, and will pursue for sure.'
debbie y
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Sarcoidosis/lungs '04' DM type 1 celiac sprue Insulin via pump synthroid,lunesta Ph1Feb06 Ph2Jun06 Ph3Dec06, 25d 7.1, 1,25 22.9 on 2/23/09
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Reenie
inactive member
| Joined: | Wed Jul 21st, 2004 |
| Location: | Phoenix, Arizona USA |
| Posts: | 3373 |
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Posted: Wed Aug 2nd, 2006 18:32 |
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Debbie,
I agree with Chris.
I don't see that you need to check for Lyme, etc; just get the D tests done unless you need the proof of addtional tests for yourself or your Dr, you don't really need them.
Your son has Th1 regardless of the diagnosis or multiple diagnoses he could get from different specialists. 
It's good that you had his illness diagnosed early and he has a treatment he can use that'll help him in the MP!
PS Although I was never diagnosed with RA, I was diagnosed with PA (psoriatic arthritis) and prescribed Enbrel, steroids, methotrexate and cyclosporine... all very toxic/potent immunosuppressive meds before the MP.
Last edited on Wed Aug 2nd, 2006 22:08 by Reenie
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carol
Moderator
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Posted: Wed Aug 2nd, 2006 21:29 |
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debbie y:
The notion that RA is a disease of infectious etiology goes back many, many years...back to the work of Dr Thomas McPhearson Brown. Some with RA respond to antibiotic protocols that are less sophisticated that the MP, but the MP is the best way to go, IMO. Dr Marshall's Karolinska poster says that there are 8 people with RA on the Protocol. I know of and am in contact with 5 of them (this includes myself). We are all responding dramatically to the MP.
Carol
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rheumatoid arthritis dx '96...started MP 8/11/04...initial D tests (7/11/04): 25-D=32; 1,25-D=65...phase 2 started 12/6/04...phase 3 started 2/26/06...vicodin & valium as needed for pain...last 25-D=9 (5/08)
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19547 |
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Posted: Wed Aug 2nd, 2006 23:24 |
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Debbie
As well as Is the Marshall Protocol an Applicable Treatment for my Disease?
Some of my family members appear to have Th1 inflammatory symptoms. What should they do?
see ARTHRITIS and Th1 inflammation
Standard Treatments information link and scroll down
If you receive messages from RA Members this is how to Search for posts by specific users to check out progress reports etc..
to REQUEST FOR DOCTORS LIST (click here) Please READ INSTRUCTIONS first.. thank you..
all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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debbie y
Member in Phase 3
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Posted: Thu Aug 3rd, 2006 19:26 |
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Thank you Reenie, Carol and Barb and Chris,
You have helped so much to direct me in the right direction. I have alot of work to do. I have a good relationship with my son, I hope he will put his trust in what I say. This will be a hard road because the prednisone has made him feel great for now. But, I know what a disabling, painful disease RA can be. And he is only 20.
You are so supportive and just by your quick responses, it has helped me alot emotionally. I think the hardest thing is that once you are on the MP and you become educated and really know what is going on, it drives you crazy now knowing all the wrong things our medical society is doing. My son's diet is full of vitamin d foods and drinks.
We go back to the doc next week so I will get the printer going. The interesting thing about all of this is that another MPer you know very well who lives in my area has also approached this rheumatologist before about the MP and it was fruitless. I can hardly wait to see his face when I bring it up and tell him I am on it because this doc knows me from previous situations and admitted to my son that he "listens to mom because we know how smart she is and she knows more about alot of conditions then we do". He misdiagnosed me several years ago and it should never have happened, so he is still embarrassed about it. It was a simple thing. The only reason he is seeing this guy is because we can't get another one. The next visit should be very, very interesting!
God bless you all,
debbie y
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Sarcoidosis/lungs '04' DM type 1 celiac sprue Insulin via pump synthroid,lunesta Ph1Feb06 Ph2Jun06 Ph3Dec06, 25d 7.1, 1,25 22.9 on 2/23/09
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debbie y
Member in Phase 3
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Posted: Thu Aug 17th, 2006 20:38 |
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My son, who has been dx'd with RA goes to doc this week. We'll see what options he offers other than Placquenil and steroids. I have read the other MPer's who have RA and I am very impressed. I am printing info for my son to read. He is just 20; I don't think he's ready mentally to do MP yet, unfortunately, he will have to go through a few more months before he "gets it", that the docs treatments are not going to be the answer. I keep trying to set a good example for him to see in front of his very own eyes!! Take care all,
debbie y
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Sarcoidosis/lungs '04' DM type 1 celiac sprue Insulin via pump synthroid,lunesta Ph1Feb06 Ph2Jun06 Ph3Dec06, 25d 7.1, 1,25 22.9 on 2/23/09
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Freddie Ash
Member in Phase 3
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Posted: Fri Aug 18th, 2006 18:00 |
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HI DEBBIE Y
This is Fred in WV. I have wonder what happened to you. You need to go with your son to that doctor. Remember, that is the same doctor that I took Sue to and on our last visit he told us not to come back. He did tell me that I was a smart man. I have explained the MP to him and give him a lot of papers about the MP. He told me that Sue did not need the MP but he gave us a diagnosis of ostoarthritis. I then gave him the papers showing him what diseases were being treated now with the MP.
Remember, we are all in this together and I am pulling for us.
Your friend in sarcoidosis
Freddie
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Freddie: dx-sarc 2/82 lymph; skin, eyes, joints, esophagus, intestines, spleen, heart,lungs-meds digitek, L-thyroxine, nexium, furosemide, nattokinase36mg,eat cinnamon w/meals,25D-7; 125-D43
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Christina
Member in Phase 3
| Joined: | Wed Dec 7th, 2005 |
| Location: | St. Louis, MO, USA |
| Posts: | 214 |
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Posted: Mon Aug 21st, 2006 06:16 |
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Hi Debbie,
I have had RA for 21 years, since I was 14 years old. I was officially diagnosed when I was 17 but didn't see a rheumatologist until I was 22. I was able to tolerate the disease for eight years by taking asprin and ibuprofen and I went in and out of remission on my own.
My downward spiral with RA didn't happen until I started taking the drugs my rheumatologist prescribed. Since I set foot into his office the disease progressed much more aggressively as the immune suppressants made the disease spread to every joint in my body.
Of course the first thing I took was prednisone and yes, it did make me feel great. So great, in fact, that I became addicted to it and took it for ten years. I can no longer take it because it has caused my bones to lose mass (osteopenia). It was never a long term plan to stay on prednisone but the other immunosuppressants didn't work well enough on their own, or most didn't work at all.
I've been on prednisone, methotrexate, sulfasalzine, plaquenil, penicillimine, gold shots, arava, kineret, remicade, enbrel, humira, blah blah blah and they just don't last.
I was never able to completely wean from the prednisone as a result and now I am literally disabled. If I knew then what I know now I would have NEVER allowed myself to touch that damn prednisone.
It is my opinion you should strongly encourage your son to get off all immune suppressants no matter how hard it is. He has so much life ahead of him and this will all catch up to him eventually if he doesn't target the cause of the disease. I am living proof.
It isn't easy to stop a treatment that fools you into thinking you are better but that is exactly what prednisone and all immune suppressants do.
I am thankful for the MP because I am responding to it. It is NOT easy and I don't claim that I am cured yet but for the first time I do have hope based on my response so far.
I think if I had started the MP at the beginning of my disease I could have saved myself the last 20 years of torture, and the MP at this point would not be so difficult. Start him NOW, not later. It will only get harder the longer he puts it off.
If you or your son would like to contact me privately please do so. I cannot express to you how important it is to start the MP now.
Christina
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Sero-neg RA 22 yrs osteopenia 125D28 Ph1Mar06 Ph3Mar07 25D9 (Dec06)
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Ival
Moderator
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Posted: Tue Aug 29th, 2006 17:43 |
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Hi Debbie
I hope you and your son have found a doctor to help I know that's one of the hardest things at the beginning. I gave up on the rheumatologist and found a general practitioner to help me. I am not cured yet but I feel I am getting very close. Here is my little speech I gave at the Los Angeles conference. Let me know if I can help in any way I'll be glad to talk to you and your son to explain what he is fixing to go through. It's not all that bad considering the alternative.
>>>>>>>>>>>>>>>>>>
Hi my name's Ival Meyer
I was diagnosed with rheumatoid arthritis in 2001 with symptoms and a rheumatoid factor of 56. I started down the usual path of going to a rheumatologist where I was first introduced to low dose prednisone, which worked great for about eight months. After eight months my arthritis came back twice as bad. I went on a second around of low dose prednisone which did absolutely nothing.
My rheumatologist suggested immune suppressing drugs, which could prevent joint damage, like methotrexate and Enbrel. Before starting the immune suppressant drugs my doctor gave me a shot of prednisone.
The feeling of being insane is the best way to describe that day. Nothing on the marshal protocol has ever been as bad as that day of insanity. That is when I decided to take charge of my disease.
What I found by researching my disease was depressing. The side effects of the immune suppressing drugs were totally unacceptable to me. Some of the side effects are multiple sclerosis, lymphoma and you are susceptible to tuberculosis and other infections.
The diseases that run in my family are a carbon copy; my oldest sister has multiple sclerosis; one of my grandmother's died from lymphoma and my father is a tuberculosis carrier. That is why I chose this path of treatment
In my research; I found many scientists that believe these illnesses were caused by a chronic infection. The Road Back Protocol developed in the seventies and still popular today uses pulse antibiotics for treating rheumatoid arthritis. Sounded good; better than the alternative; so that's where I started. During that time it became obvious to me that this was some kind of infection.
My results were good on the road back and it slowed it down but it never really brought me to a remission or a cure. During further research I found the Marshall Protocol on the internet and they were going to have a conference in Chicago on autoimmune diseases. Best decision I ever made was going to that conference. This is when I truly learned about my disease.
The hardest thing about starting the protocol was finding a doctor. After six tries and about an inch thick of paperwork I finally found a doctor that would help.
The first two weeks on Benicar definitely helped on reducing the inflammation in my joints and muscles. Within the first three months; I was able to stop all of the NSAIDS. For the past six months I have only needed the marshal protocol medications.
The problem was starting the antibiotics is it does not make you feel better. You have to be ready for a long hard year dedicated to your recovery. When I started the antibiotics my joints were still one of my main problems but I started getting a lot of symptoms like the other auto immune diseases.
I will not go into details on all the herxs that I've had but I've had just about every one of them to some degree. I definitely had a lot of sub clinical inflammation. Some days I would have lung herx so bad you would think I had Sarcoidosis, yet I've never had anything show up on my chest xray .
One of the most important things in my recovery is The Marshall Protocol web page. Whenever I started questioning myself if this was the right path to travel. I would read the posts and all the scientific evidence to regain my confidence.
Your recovery is very slow; a lot slower than one would like but you cannot change the science behind your disease. One day I would be worrying about my hip or my feet hurting and then notice my hands had not hurt for weeks. My ankles were no longer swollen . You just slowly continue to improve.
My improvements consist of skin, muscles, eyes, brain fog, IBS, neuropathy, lower back pain and Raynauds syndrome. All of my joints have healed or improved dramatically. My rheumatoid factor which started out at 56, is now down to 16, I bet it eventually goes to zero.
I caught my disease very early and I am very lucky to have found the Marshall Protocol. I am not going to get up here and tell you that I had deformed hands and they are now straight. My feet show signs of arthritis but they do not hurt any more. I can get up in the morning and walk across my tile floor with no problem that is something I thought I would never be able to say again.
I used to walk like an eighty-year-old man now most of the time I feel like I am eighteen. From what I have witnessed on this protocol. I know this can take me to a full recovery.
The fourteen months that I have been on the marshal protocol has taken me from not being able to work and planning on going on disability to rejoining the work force by the end of this year. It has not been easy it will probably be the hardest thing you will ever do in your life.
Everybody has to make up their mind if it is right for them. For me the decision was easy a lifetime of treating symptoms and getting worse or believing in the new science and a possible cure.
I started in this with an open mind and the termination to find out if this was true. I can honestly say everything that the marshal protocol has predicted in my case has been true. I am well pleased with my recovery.
At 47, I now have a future of living a normal life without the pain and the deformation of rheumatoid arthritis. Trevor Marshall's research and understanding of these autoimmune diseases have definitely opened the door for a fascinating new treatment. I would like to thank him for sharing his knowledge with me; which was allowed me to be in the first group of people ever to walk through that door. Thank you
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MP 4/12/05/Benicar Q6h Ph1 4/26/05/ 25D13ngml 125D44pgml Ph2/6/1/05 Ph3/1/25/06 diag RA 2001 Male 47
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debbie y
Member in Phase 3
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Posted: Tue Aug 29th, 2006 21:03 |
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To Ival,
Thank you so much for info about your RA. I have heard from many MP'ers who have RA and I have read your posts. What a great group of people on the MP!! And yes, your replies have started to influence my son. Remember, he was just dx'd and is on steroids and placquenil. But because of your honest and candid stories about yourselves he is beginning to realize what he will be up against and that he does have an opportunity to stop further damage.
Thanks to Barb for a list of docs. That will be the next step. If my son does go on the MP I wonder how many families have more than 1 person that are being treated together?
with sincere appreciation,
debbie y
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Sarcoidosis/lungs '04' DM type 1 celiac sprue Insulin via pump synthroid,lunesta Ph1Feb06 Ph2Jun06 Ph3Dec06, 25d 7.1, 1,25 22.9 on 2/23/09
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