I was so excited but now I read that it takes months and months to work. I am afraid in "months" I will be wheelchair bound and it won't matter. The damage will be done. I also got the impression that you should not take other drugs with it. I could not get through a day without my antidepressants and painkillers. Am I right about these assumptions from reading message board? I have to do something immediately as I can feel my body becoming more damaged, it seems daily. I like a more "natural" route but I will not give up painkillers or antidepressants. I have a hard enough time holding it together. RA runs my life. Roxy,
I don't know much about it but I had read a few posts on the AF
message boards about people staying with traditional
treatment while on AP. I don't see much of a reason why the
biologics and painkillers would interfere with AP. I dunno
though. Let us know what you find out. Good luck!Roxy -Please don't get too discouraged. Yes, AP can take months (of killing off the disease-causing organisms) before some people feel improvement. Others notice it much sooner. I have started it and always ask myself "where will I be in 6 months or a year if I don't take it"? Worse, I know. Depression is very much a part of the autoimmune diseases, as Dr. Brown recognized. Many people take antidepressants while on AP. For that matter many also take pred, but try to reduce the dosage as they go along. I am pretty sure some docs even keep their patients on Mtx or Plaq at the beginning. You might want to post this question on the rheumaticsupport board. People there are very caring and experienced, and will try to help. I wish you all the best! Here Roxy, I found this story through Google Groups but it's right here
on this website! It's not very scientific but sometimes when you're
feeling discouraged it's good to read other people's stories. It's a
"road" back, not a driveway---haha! I'm still researching it myself. It
doesn't work for everybody but I see if it's well managed it doesn't
hurt to try it!
Here is the story
http://www.arthritisinsight.com/community/stories/gary1.html
Gimpy, That diary is so encouraging. What a dramatic difference. I am afraid of that (can't remember name) where you get sicker before you get better. I am pretty worn out from this disease and cannot imagine handling getting worse. I want to be active again so badly. I hope to be in warm water therapy soon and hope it helps like it did before. It made a dramatic difference. I am going to go back and post on the AP board. Thanks for the advice.
You are doing the right thing. I had (and I mean had) a very aggressive RA. All my bloodwork was off the chart for inflamation. My latest bloodwork is NORMAL!!
I started AP March 2004. I was one of the lucky ones to become sicker. Kinda like a really bad flu. Especially the first few weeks, I was really light headed and dizzy. All common to herxing. But if you look at it, like I did, Hey! These antibiotics are killing those nasty microplasmas then you know it is working.
Hang in there. I can try to answer all the questions you may have as far as my case. I hope you got your doctor through www.roadback.org then he/she will be very familar with AP and the treatment.
I had a wheelchair parking ticket and now I don't and I don't need it. I am working on my 7th book and I never take my painfree days for granted.
You are soooo brave to try this along with everything else going on in your life. I am very proud of you and I know we will be hearing wonderful things from you in the future! Believe it!
Becky
Roxy I must stay on all of my meds or will swell and cannot move while on AP. As the AP works directly on the problem areas the swelling must be kept down so it can reach the infection.
It is great for those who can stop using other meds but some of us cannot do that and it is OK.
Roxy,
I am very interested in this AP treatment as well. I continue to take my Enbril and Planquenil but I am always wondering WHY? WHY do I have RA? Where did it come from? What is the source of the illness?
I have an appt with my rd on Monday and I too am going to ask her about this. She is usually very open to other things.
I will post on Monday night about her answers.
So I've heard about this before...and it's not nessicarily used ONLY for RA...I've heard it used for other immune disorders that cause swelling and general pain....my question is HOW exactly does it work? I like to know these things. :-D Has anyone gotten a run-down of just what it is that's going on when you take these meds? Be as scientific as you need to, I'll understand. (I hope) Haha Thanks!
Katie,
check out www.roadblock.org
they show the protocol antibiotic treatment. I am sure it varies but the website is actually pretty informative.
Don't say I am brave until I actually try it. I am looking into it. I have this terrible fear of being wheelchair bound and I will do whatever I think will work best to keep that from happening. I am very excited about AP therapy and I did get the doc off roadblock.org.I know I keep saying this, but I think for anyone interested in AP
therapy "The New Arthritis Breakthrough" with "The Road Back" in it is
a very worthwhile read. I'm just in the middle of reading it but it
answers a lot of questions. I've seen a lot of positive anecdotes about
this therapy, and also seen some negative ones. It seems to have a
success rate a little better than all the other various courses of
treatment, and the drugs are a lot milder! I don't think it can
actually hurt anything unless you're not taking anything else and the
antibiotics don't work for you. Howvere, like with any treatment, the
more you know about the better chance of success you will have, so
isn't it worth it to spend some hours reading a book or a website?
One thing that is weird is how it's ignored in most RA literature and
conventional medicine. I've looked through a lot of the books and they
don't even mention it, yet they have bee sting therapy in them! So it's
kind of political as well. Those books go into a bit of that story, too.
I've been to the website but I don't see anywhere that explains it like I'm looking for. Can someone just sum it up for me? Katie - I am far from an expert, but the premise is that RA (and other AI diseases) are caused by the mycoplasma bacteria. This bacteria is unusual in that it does not have a cell wall around it, hence it is called cell-wall deficient, or CWD. It is very responsive to the tetracycline class of antibiotics, such as minocycline or doxycycline, which are given in very low doses either daily or on alternating days. This dosage is the same as that prescribed frequently by dermatologists for acne, and is safe to take long-term. Resistance to this class of drugs does not become a problem, and if an antibiotic is needed for something else, such as pneumonia, a drug from another class can be prescribed, usually along with the AP. Doctors are divided as to why it works, Dr. Brown thought it kills the bacteria, others think it works as an anti-inflammatory, the inflammation being caused by the bacteria. Still others think there is some type of allergy to the bacteria involved, and the AP helps control that. Anyway, this is my understanding of what I have gleaned along the way. Like my RD said, "it certainly can't do any harm". All the best! So why would the bacteria cause inflammation? I understand the rest though, thank you.
Roxy - I have quite severe RA. 10 years ago I was like you but couldn't get out of bed for months. I think I have mentioned before my daughter cooked the meals as I was unable to. She was at university & didnt have much time so it was usually stir fry vegetables plus pulses.
I am not saying that helped because I am not sure but I had enough energy to leave a bad marriage & then started walking a little each day then a little more the next & so on. I never made the wheelchair I was certain I was heading for. I still have flares but not like then, still have serious fatigue and depression and flares sometimes but I do not have the energy to get serious about my diet or remembering to take supplements. My new year resolution is.......well I'll try. I often consider the antibiotic treatment but have not as yet read the book & to be honest am not that comfortable with long term antiobiotic treatment for myself as I am allergic to many drugs. I did briefly try olive leaf capsules which are meant to be a natural antibiotic & wonder if they would have the same effect so if anyone has tried this would love feedback. I know someone who has been on the antibiotic treatment & it helped her - she still had flares but not as often. That was a few years ago so I will get in touch & find out how she is now.
I dont know how it has been for others but like you I had severe flares (thought I would die it was so terrible) but they lasted months & 10 years later I'm still not in that wheelchair. So I am hoping this post will at least be a little bit positive for you. Do what
feels best for you & try it out - 6 months treatment will give you an idea of what is working whatever you decide to do.
Best of luck with whatever you do.I am on antibiotic therapy. Going on 1 year. Biggest improvement is no more swelling but I still have the pain. My feet used to be so sensitve that I a wrinkle in my sock would bother me. That doesn't happen now. I have been ill for almost 30 years. Lots of inflammation which doctors concluded that I had fibromyaglia. But I could never get better....than RA hit. I am so thankful I was sent to a RA doctor that tries AP first. He is the top researcher in Northern California for this protocol. I feel very confidant with him. He said since i have been ill so long that it might take years before my Fibro/RA gets better. I am in it for the long haul. It terrifies to me take the heavy duty RA drugs and could shorten my life. I would rather do AP. I am on other drugs also that my doctor adds to the AP therapy along with many natural supplements and anti inflammatories. Also, I am on an antidepressant. And....lots of probiotics!
Thanks Cassandra. Your post cheered me up. Did your doctors say to you _ have you considered a wheelchair? I have been asked that several times so they reinforce my fear. Being out of pain thanks to the oxycotin has made me more hopeful. I am worried about my next MRIs. I feel the damage, even on good days. I have always been afraid of the drugs and I really want to try AP. All I have been reading about it, I think the pain meds and antidepressants will be fine. I am still taking prednisone, which I hate, but maybe I can lower the dose. I told Brett I met get sicker before I get better and he said he will take care of me. Things are really turning around here. I was complaining about my cane and not being able to lift and he said "all of us are going to be there one day". What an amazing kid, he is only 16. My daughter constantly tells me how much she loves me and we would not have her home if it was not for RA. That is something to be thankful for. I think Brett just needed time to adjust. He is being way more supportive. We have to remember that life changes. When I am in the middle of a bad flare and even small movements hurt like hell - it is hard to remember "this too will pass". I am so grateful for this board because I can dump all my fears and insecurities here and I get so much support.
Lynn Ann, It is hard to think how long AP works but I have had RA for almost three years. Patience - that is what I am learning. I am very blessed in so many ways. I have two huge great dogs that cuddle me, kids that play with me and a husband who I know loves me. Remember one day at a time and yesterday was a good day. I know I bitch A LOT but then I can get it out here and not take it out on my family
Have a look at this site www.wobenzym.com and I am sure you will find a tremendous support for pain.
After 12 years of RA I have tried MTX, Predisone and sorts of drugs for pain.
With this kind of enzymes I am just with 5 mg of MTX weekly and I hope to reduce even more.
Take care with what you eat, No food with aditives, Dairy products,
soft driks, sugar, cakes ( just made by yourselfs ) .
Eat food as more natural as posible.
God bless you
Lour, I have always been very diet conscience. It just gets hard because my hubby is a bad influence. He loves big heavy meals and the kids love them too. I am finally getting better about making my plate and choosing only the healthy things. I avoid wheat but yogart and non fat milk really help my stomach cope with the meds. No soft drinks, no sugar except sometimes I indulge in licorice or ice cream (it is tough, everyone around here loves ice cream) but I pretty much buy organic and we eat lots of veggies. When Brett is gone, I do much better but I also eat more TV dinners - weight watchers. I really do believe diet makes a huge difference. Brett does not buy processed foods and I don't either. Except if the kids go shopping with him, he will bring home chips, sausage and gross stuff. I rarely eat junk food. If I get the munchies I eat air popped popcorn or cheese and crackers (rye). I know that is not great but better than some people. My diet has always been important to me. I miss making good money. It is expensive to eat good.So....I am back to the drawing board for me
gena,
before you give up on it that quick read some of the patient stuff on roadback.org
your not the first person who was told it's useless but some people decided that answere was not good enough found a ap doc and from what I read are better off..
will it help? who knows...
but you got to ask yourself is what I am doing now helping?
The fact that some people have gotten better makes me want to try it.
Roxy hi - to add to my previous posting -it was suggested 10 years ago that I go & live in a nursing home
This morning I saw one cat of mine running, then the next chasing her, and then the next chasing her. What fun they are having in our new yard. What would we do without our pets.
Good explanation Feline. Now I just hope that I can handle getting "sicker" before I get better. I really want to give this AP a try. Cassandra, stories like yours - we all need to hear. The possibility we can get better. I drink a lot of soy milk also but I could not live without my yogart. My nonfat milk I only drink in the morning but I guess I could give that up. My last blood test it said I was very low on vitamin B. I take a multi vitamin that is supposed to be high in vitamin B. I wonder why RA depletes vitamin B?
I think I am going to try to do some gentle yoga today.
You should see my Tyler dog and Abby together. They have such a blast and are so in love. That was one GOOD decision I made. More mess in the house but way worth the extra laughs
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