Ok, I must be REALLY bad with computers, I went to the road back foundation but can't figure out how to work the message board there!!! I live in MI and there is not a contact to email for MI listed so it says to post it but I can figure out how to do that??!! Is there somewhere else I can get the info or can someone enlighten me?
Yeah that message board layout is a bit weird. Humm...What specific problem are you having with the message board? I can help you with that, probably.
Ok, I figured out how to post, DUH!!! but, if anyone has any other suggestions, comments or advice, I would love to hear it!
I have some advice: Don't forget to enter your email address in the post or no one will be able to mail you any ifo!
Hi All I have tried 2 times with alot of time in between waiting for a reply on The roadback. I have never gotten an answer about an AP doctor. HMMMMM That's odd....usually someone emails pretty quick. Are you sure you put your
email address and other relevant information? They won't post the
information on the board.
Michele -
There's an AP doc pretty near you. I can't get on my email because of some stupid tech thing so I keep sneaking my hubby's computer. I'm definitely going shopping so I'll bug hubby to get the darn thing open and give you a shout.
Chris -
Can't explain your problem with the RB. Did you start a separate thread? I've noticed that sometimes people who add in on a thread get missed. Post again, please. You won't regret it.
Luck to both of you!
Pip
Edited to add - I've noticed that sometimes the RB list keeper posts from his own email account. Don't forget to check your spam folder. Quite a few responses end up in there.
Michelle,
I think you'll probably end up on the MP and I think it's probably the best thing in the world for you. The reason most people who start on AP progress to the MP is the herxes. Even people in remission on AP herx like hell when starting the MP. This tells me that while they felt good, they still had a lot of microbes in their cells and if they would have tried to go antibiotic-free they would have gotten their AI disease back (usually within 2 years).
The benefit of AP is that you learn to 'manage your herx'. That means 'take a pill, get a mini-reaction'. For me, almost 16 months into AP, that translates to maybe a vague wrist twinge or something similar. Sometimes I can't even feel anything any more - which makes me think I'll be be stupid and think I'm 'cured' when I'm not.
Because we're all different - when we start AP we can get different reactions. Here on AI people are reporting herxes differently than on the RB. I don't know if it's because some of us are still on some traditional meds or maybe because the people starting AP are more newly diagnosed so, in theory, have less to kill than RBer's but the differences are noticable. Maybe the RBer's are sicker - quite a lot of posts on "I've tried everything else and this is all I have left" which would make sense if the infection theory is correct. Think about it...if you've suppressed your immune system with the traditional meds then the if the microbes are truly the problem then they are partying like mad behind the scenes and multiplying and multiplying and of course you would have more to undo.
Either way, with AP you are learning how to 'manage the herx'. There were times that I just skipped the dose because I didn't need a reaction that day. It freaks you out because you just want to be done with this...but sometimes life gets in the way and you need to make sure you're up and running on all cylinders. LOL
Herxes are usually pretty mild for the newly diagnosed. I just got better and better. Yes, I swelled up occasionally, and had random 'attacks' for want of a better word, but it was really mild from what I've seen on the RB. Mild herxes are nausea, dizziness etc. All go away pretty quickly. But remember, you are removing dead microbes from your body - they release toxins. Some people are really sensitive to those toxins and they get the herx from hell. I've seen posts where peoples whole bodies swelled up. People with body hives. People with heart palpitations. Which makes sense...AI diseases are systemic. Why would I want to kill the microbes in my joints but leave the beasties in my heart. I want them all DEAD! LOL
People with high lupus levels tend to 1) need doxy instead of Mino and 2) really react to Mino. Some of them never get up to 200 mgs MWF. I mean 25 mgs MWF knocks them to the ground. They can still do AP...but they need to start low and stay low in order to heal.
You have no idea how your body will react. Without a doc versed in the MP, I'd be very hesitant to start it until I knew my body well enough to figure out what was a herx - and what was 'time for a trip to the ER'. My example was my 3 month herx when my hand swelled up. I was ready to go to the ER because it sure as heck didn't look good and scared the hell out of me - but it was only a herx and stopping the med allowed the swelling to go down.
And GoGo is right. Benicar is a big bad in that it's an exponiator. So, if your herx was going to knock you to the ground it would be many times worse than that with Benicar. I know the MP people use higher doses of Mino to reduce the herx (higher doses are immune-modulatory) but...I'd be hesitant to experiment with it until I knew what to expect from my body.
Another difference is you have fibroids on your lungs. Minocin will reverse that and you can do a Google search and see the research on it for yourself. But on AP/MP you will get worse before you get better. It's pretty darn hard to believe it's working when an MD is freaking out because you have MORE fibroids. Taking it slowly may give your body more time to reverse this in the long run. The Scleroderma people have lung issues and they get better - but I've seen enough posts about MD's freaking out that I'd personally try to avoid that.
As soon as you can figure out 1) it's working and 2) how to control the herx, I'd seriously think about starting the MP. I see no reason to wait until remission before starting the MP. My hubby wanted that for me but I thought I could have handled it by January of this year. He was against it because of the move. Didn't want me on the ground with a herx when there were trucks to unload, I guess. ;-)
Which brings us to the 'modified MP' camp. That seems to be the vitamin D camp. Some MP docs are mega dosing on D and Marshall says D is the problem. It's not a vitamin at all but a powerful steroid hormone so the antibiotics can't get behind the steroid action and get to the microbes. Hence the sunlight thing (which I've heard he's since changed and sunlight is OK if you can stand it but the D foods are NOT). You are in MI so avoiding the sun is pretty easy 6 months of the year. LOL. Anyway, Marshall is a bit of a 'cult of personality' and he'd be against anybody messing with his protocol. I still haven't done my D research to figure out where I stand on it - but since he's saying 'cure' I'm tending to lean toward what he says. The problem is not the D levels, it's the ratios between the 4 tests. So...I'm glad you're getting the test because that should tell you a lot. I do know one person that saw a modified MP doc and just never had the D script filled. She's got the MP in the way she wanted - Marshall's way. Don't know how I feel about that...you'd think we'd be able to make our own choices with docs but...there are so few of AP docs, let alone MP docs, that you work with what you have.
Yes on Brownstein. When I got the names from RB he was one of them. I called and got totally turned off by the baracuda that answered the phone. She seemed totally into money and for somebody wondering if this was all some cruel hoax, I figured this guy was a money grubbing scoundrel that was out to rip me off. I never called back. Later, I met some other Michiganders who actually see this doc - and they LOVED him. I mean they couldn't say enough good things about him. I've since come to the conclusion, after talking with other RBer's and other AP doc offices, that the baracuda's at the front desk are the first line of defense for these docs. I now regret not seeing him in MI. If you check out his website, he's big into the hormone connection and from what you've posted - your hormones are waaaaay off - more so then the rest of us. I think he might be really able to help you, especially in the fertility department. Can I guarantee it? No, just a strong feeling because of things I've read and seen posted.
Did I get everything? I'll try to steal hubbys computer later to check back.
Hugs,
Pip
It's true, my herxes are of the wee mini nature. That's the whole point of
Like the traditional meds - if you're on AP, you are probably on antibiotics for life.
That being said - the advanced versions - the MP (who use the word 'cure') or the CPNhelp people (who don't use the word cure but only go in for a few IV's once a year if I have it correct) have people as close to 'cured' as I've found in my research.
There are people on regular AP that go 'antibiotic free' but they are a rare bird. Talked about but never really seen. I'm guessing it's probably about 5% or lower. I think there are ways to make it work for us - meaning fix all the issues that got us into this mess in the first place. Like leaky gut. Like sleep patterns. Like emotional issues. Fix everything and you could be one of the lucky AP lotto winners.
The problem with AP is that you eventually start feeling great. From what I've gathered, people feel so good they 'get stupid'. You slip back into the old ways. Bad diet. Bad sleep etc. You feel like you are cured so you stop the antibiotics...and the microbes can come back bigger and badder than before. Usually about 2 years after stopping the abx but I did see one post of somebody who went 5 years without a problem when it hit.
Most people aren't really interested in being cured. Think about it. What's the big deal of 6 pills a week for the rest of your life?
Me? I want my 'cure'. I think there is a way to get the body to do what it's supposed to do...kick those buggers out of the cells on it's own. I don't want to 'get stupid' and think I'm better until I'm pretty sure I fixed everything 'broken'.
:-)
Pip