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Hi Guys,
I am still waiting for the book to arrive!! I have spoken to my Dr re AP, although he is aware of AP he does not think it will help. He seems to think that if it really worked DR's would prescribe it and that DR's have no interest in making money for the pharmaceutical (spelling!) companies. I have a lot of faith in this DR but have to say I am a little dissapointed that he does not think it will work. I am so confused because I want it to work but at the same time I am so scared that joint damage will occur along the way. If what I read is correct on the internet it saids joint damage occurs when there is pain and inflammation – it seems that a lot of you have frequent flares with pain and inflammation – does this not scare you? Sorry to sound so unbelieving in the program – I really want this to work.
hey lizbeth…..I haven't tried AP before….I have an appt in March to start it…so I have no experience with it yet. But, here is my theory on it…..rheumatologists dont wanna prescribe it because it works and then you would not have to go see them every two to three months for the rest of your life and have tons of x-rays and MRIs and bone density scans that are conveniently in their office (at least the three rheumys I saw had all of this in their office). So, why would they wanna cure you? They are making tons of money off of your insurance for the office visits, labs, and radiology. There would be no need for rheumatologists if patient's went into remission on AP. Also, they do benefit from the drug companies in some ways…..by fancy lunches and dinners and out of town trips to “conferences” . Its kinda like “I'll scratch your back if you scratch mine” kinda thing. I used to work in a doctor's office (13 years) and the drup reps stalk them daily. I have to say that I worked for two great doctors in my years and they would prescribe the meds they wanted…they didn't even like talking to the drug reps. I saw plenty of other docs who weren't that way. I don't know what my experience will be with AP but I plan to give it the best try I can. Right now..I'm just tired of taking meds that are poison to my body and are not helping.
Thanks Peach but it was my regular Dr that I spoke to not my Rheumy. He usually is very informed and up to date on the latest treatments. I am sure what your saying is true with a lot of docs. I still plan to see a dr who will prescribe mino and read the book to make an informed decision. I think you guys are really brave and admire all of you. I will be watching posts regularly for updates and hopeully get the courage to get off these toxic drugs and join you.
[user=2095]lizbeth[/user] wrote:
Hi Guys,
I am still waiting for the book to arrive!!
Lizbeth,
Reading the book will help to answer most of your questions. It is my opinion, that if one wants to use this therapy, that you must educate yourself as much as possible and then make the decision yourself. I know you like your doctor, but your doctor is a human, a well trained in medicine human, but human none the less. He is the medical professional with which you CONSULT. I believe that we should view our doctors as consultants. As the CEO of any company who hires a consultant, the CEO takes the views of the consultant on advice and MAKES THEIR OWN DECISION.
Your doctor is displaying a pack mentality and making an erroneous analysis that because the majority of doctors believe this therapy does not work that, therefore it does not work. This does not make his opinion true. There are many doctors, although certainly not the majority who do know that this treatment works because they have watched tens of thousands of people get better. Who is right, the doctor who does not believe the treatment is valid because they have never tried it and listen to others who have never used it, or the doctors who have practiced this therapy for many years and watched people get better?
This is something that you must decide for yourself, it is a very personal choice and not always an easy road to follow.
The three AP doctors I have seen are all Rheumatologists, one is practicing at Harvard. Another did his rheumatology fellowship at Stanford University, the third did his Rheumatology training at New York University. These doctors do beleive that this treatment works. If it is majority opinion that you seek to determine your treatment of choice, then AP will likely not come out on top.
Whatever treatment you choose, it is ultimately your personal decision, you need to educate yourself as much as possible and choose what makes sense to you.
I beleive that a thorough reading of the New Arthritis Breakthrough will give you the information to make YOUR decision about AP therapy.
As always, we are happy to share our experiences. And, please, never ever apoligize for expressing doubt, you should express doubt, ask questions and continue doubting until you have the information your need to make your decision. Doubt what you read here and doubt what your doctor tells you. In my opinion doubt is merely questioning and that is what will see you through. Question everything until the answers resonate with you and begin to make sense. Then your decision will be apparent to you and you will know what you want to do.
Good luck, we are happy you are here to learn all you can about your treatment options.
Cheryl F
Hi Cheryl,
Doubt is the only thing I am sure about! I want this program to work but when you hear from mainstream it doesn't you will naturally doubt. On the other hand I hear from my dr that it does not work but I then doubt him!! What a crazy mixed up world!!
I guess I am having a strong opinion about it because my doc wont even consider it but it isn't him who is dealing with the day to day pain and hand weakness. If it was, I'm sure he would seek whatever he could to help him. I just get frustrated. I'm not asking for snake oil…I'm just asking for a different med that is already FDA approved. I am hopeful it works. Sorry….I guess I just had to vent in my earlier post! I ordered the book from ebay and it should be here this week…I can't wait to read it. There are other websites and forums I have been on where peopled have had great success with AP. I research things to death. 😛
[user=2095]lizbeth[/user] wrote:
I want this program to work but when you hear from mainstream it doesn't you will naturally doubt.
When NSAIDS were no longer helping my RA pain, I asked my naturopath to check into the AP protocol. She had never heard of it, but after researching it thought it was worth a try. The very first day of taking the minocycline I felt such relief. Unfortunately, it was short-lived because we eventually found out that Lyme disease was the real culprit. By that time the Lyme bacteria was pretty entrenched and it had caused a host of other problems. The treatment thus far has given me a lot of grief–the healing/herxing is not easy. I started the minocycline in April '08 and the Lyme treatment in Oct '08. Because of initial high inflammation (hsCRP 134) my doctor didn't have me on antibiotics until this January. It's a long, slow road and I can see where mainstream medicine might say it does not work–we are used to instant gratification. I've had more than one person ask me–what, you're still dealing with this?
Good luck in your journey–
Trudi
Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?
Lizbeth,
I could not have said it better than being the CEO of your own body, and the doctors are your consultants. When my very first symptoms started, knowing my body as good as I do, I was the first one in my IM doc's office. When he didn't know what to do, he gave me a prednisone pack, sent me to get an MRI, and from there, I saw 16 specialists–all at the top of their field, very educated, etc. They took blood and urine from me weekly, did a lot of unneccessary tests (to the tune of $50,000), x-rays, bone scans, bone marrow aspiration, etc. I came up with my OWN diagnosis, after spending months digging for information, and figuring out that all of my “specialists” were ignoring some very obvious signs of what was wrong. (mostly, because they were too wrapped up in looking at what they specialized in) I was told by 3 doctors that I “absolutely, unequivacally, do NOT have Scleroderma, and I certainly do NOT have Lyme disease.” They could not have been more wrong because I have both. They were quick to throw all the biologics and prednisone at me without a second thought but, when I gave them info about AP, they wouldn't even read about it. I desperately wanted to believe them but, I came to a point where I knew that if I listened to them, I could very easily end up dead. I read the Henry Scammel book, and I never looked back, or went back to any of those doctors. It made so much sense to me, and I was angry that such a simple solution existed for such a complex, fatal disease. It hasn't been an easy road–it would've been easier to take their drugs to feel better temporarily but, I don't believe I'd be feeling good now. All I've been on is antibiotics for my SD and Lyme disease, and after 1 year, have done a complete turn-around. I finally feel like I'm getting my life back, and I feel so lucky to have found this site because it literally saved my life. It doesn't matter to me who believes whether this works or not, and I stopped trying to convince people (doctors mostly–even one in my family!) that it does. I'm living proof, and that's good enough for me.
You absolutely should question everything, and have every right to doubt it all. What you shouldn't ignore is your gut instinct about what to do, after you empower yourself with information. Every one of us can tell you our story but, you have to make the decision of what to do for yourself. No matter what you decide to do, we are all here to support you when you need it, and answer any questions you have.
The best of luck to you
Maria
Maria…your story brought tears to my eyes. You have gone through such much. You are such a brave, strong person. I'm so glad you took control of your life and are doing so well. 🙂
My rheumatologist was aware of the scientific research on minocycline and prescribed it for me. She lacks experience in following people on the medication–didn't recognize the bluish marks on my thighs as being a side effect, didn't recommend taking a probiotic, etc. It has worked really well for me. I insist on annual X-rays to make sure I'm not having progression/joint damage. I go back for a visit in May.
Sierra
Peach 73,
Thanks so much for the kind words. I think most of us have been through a lot, and although the details may be different, I don't think my journey is unique. SO many people on this board have been their own (or a caretaker who took control) advocate despite the opposition from doctors, family, etc. The strength that everyone has on this board blows my mind on a daily basis, and it's no surprise to me when I read success stories. It doesn't matter how we all got here, what matters is what we do with our experience.
Hi Lizbeth,
I think you are getting the message by now that everyone has to make their own 'informed' decision about what treatment path they would prefer .. with the help of their medical professionals, whether that be the traditional pathway or AP therapy. There is no doubt about it that it takes courage to do something contrary to what your doctor is telling you, but if I read your post correctly you did say your doctor is hesitant to put you on AP because he doesn't think it will work. If I were you I would have asked him 'why don't you think it will work' & expected a reasonable answer.
There is no doubt in my mind that AP can work, but it takes time. Only you can say whether you are prepared to give it a go.
I notice you are in Melbourne – me too … can I ask where are you ?? On 2nd thought I am going to PM you …
Maz – Aust
Dec07: Diagnosed PRA, (CTD; Fibromyalgia; suspected Lyme):
Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)Jan 2018: ABX Mon/Wed/Fri (started AP 2008)
1/2 x 150mg Roxithromycin(Biasig), 1/2 x 150mg Clarithromycin (Klacid),
1/2 x Fungillin, 1 x 250mg Cephalexin (Keflex)All off days Probiotics
Hi Lizbeth
Another Melbournite here and although I have been out and about for a while, I agree with Maz.aust. It does work but takes time. I have been on AP since March 2008 and cannot believe the change – scares me write this in case I cast some spell on myself and it goes heywire. I feel normal!!!! now that is a statement and last weekend my husband and I ripped up tiles in the kitchen. I have plenty of bruises and bumps and cuts but I could not have done this 12 months ago. I am also just getting over my first autumn cold – been a week now and no AR side effects.
Hang in there.
Cheerio
Annie
Lizbeth,
when I had to take antibiotics my rheumy got very upset. She does not beliefe in it, so I left her and found an AP doctor. She has helped me a lot and still is. I have an appointment on Thursday and she will be very suprised how well I can stand now. She also put me on LDN and it really has helped with the muscle weakness. Stick to your guns because we have to be our own doctor. When you get your book read it several times and mark the pages that seem to seem to interest you most.
Eva:D
Eva Holloway
Lizbeth, I just want to tell you that my adult daughter (in Ontario) was fortunate enough to have a rheumy who agreed to AP, though she ( the Dr. )clearly didn't think it would help. At my daughter's 3 month check -up her rheumy told her 2 other patients had also requested AP and that they, as well as my daughter were doing very well. The Dr. indicated she would be looking into this therapy more closely.
My daughter is in remission. The Dr. now does not take new patients as she has a baby.
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