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Chicago Deb
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| Joined: | Tue Jul 15th, 2008 |
| Location: | Illinois USA |
| Posts: | 18 |
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Posted: Sat Aug 30th, 2008 00:47 |
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Is Guaifenisen Contraindicated...I mean, it's just a little snot pill?
Guai Protocol eliminated my Fibro, now I want to try MP for OA
I read the entire list of contraindicated meds and Guaifenisen was not on the list.
My Fibro is totally cleared on the Guaifenisen Protocol, but I am told I better get on MP for long term habituation issues with Guai and because it may help stop my OA.
(Chatted with Joyce Waterhouse PhD)
I am getting my first Benicar Rx tomorrow.
I am going to gamble that MP may be able to hold back my Osteo Arthritis that is just begining to loom....meaning if I do nothing: I'll need new hips in exactly 10 years if I follow my Mother and older sister's medical history....Which I do.
You say, don't mix protocols...but c'mon, what's the danger of a little mucus pill?
deb
No signature yet, since I start tomorrow Aug 30, 2008-My MP Birthday!
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Fibro, OA. PH1 wk2 IP showing promise.
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Dr Trevor Marshall
Research Team
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Posted: Sat Aug 30th, 2008 01:58 |
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If Guai only had an effect on mucus it would not help your CFS 
Even at normal OTC doses it is mildly immunosuppressive. So you certainly don't want to use too much of it.
The good news is that low doses are compatible with the MP meds, provided you cut back the dose to an absolute minimum. Remember that the microbial beasties are living inside your cells, so as you kill the beasties, you will also kill cells. That is what causes immunopathology. You can't get better by stopping your body from generating those dead cells
You don't have to 'gamble' with the MP. It is based on science, and that science is now solid. I am spending less and less time at home as I spend more and more time speaking at the medical conferences
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Chicago Deb
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| Joined: | Tue Jul 15th, 2008 |
| Location: | Illinois USA |
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Posted: Sat Aug 30th, 2008 14:27 |
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So I'm going to the Pharmacy right now. TM, ....sir
I'm picking up my first Rx of Benicar.
You're saying you want me to stop the Guai and let the Fibro come back out, after I spent a year squashing it down to nothing?
[Wow, I can't believe you answered my piddly little email.
Sir, I'll do anything you tell me.]
I still can't find that magic cheap supply of Benicar folks online talk about.
I'm in Chicago, IL.
Or do ALL coumpounding pharmacies, (like where I got my guai,) make them for cheap? $$$
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Fibro, OA. PH1 wk2 IP showing promise.
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Chicago Deb
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| Joined: | Tue Jul 15th, 2008 |
| Location: | Illinois USA |
| Posts: | 18 |
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Posted: Sat Aug 30th, 2008 15:39 |
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Ok, lemme just come out and ask my specifics:
I want to be able to take the following meds in order of my love for them them:
Coffee 2 cups
Celexa 40mg depression
Gabitril 4-8 mg anxiety CURE for me
Flexeril so I don't clench up my body in whilst sleeping
Oh I forgot the most favorite of all Fibromyalgia folks:
Ultram/Tramadol---c'mon PLEEEEASE of all the drugs, you gotta let me keep this one for my back injury from 20 years ago, that they can't fix.
......And 2 Vicoden a month....that's all I'm asking.
Your dudenesss, sir, in the last 6 months I've quit smoking, off the patch, no coffee, no Vicoden, I don't need NSAIDS, I'll do the dang yoga, if I have to.
The only Chicago MP Doc is a hippie-dippy and wants me to try all these other alternative herb crap and he doesn't believe in the hiding from the sun part! nor the stopping of the vitamins and supplements! He says taking Vitamin D won't make a difference.
I had to spend an hour with him to convince him MP is worth the gamble so I can be the first in my family who gets to keep her hips! He said he's never heard of MP for OA.
Ok honestly what of these pills can I have. I know I can take Valium (non-generic) I will need that!
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Fibro, OA. PH1 wk2 IP showing promise.
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Julia
Advocate (on leave)
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Posted: Sat Aug 30th, 2008 17:08 |
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Hi Deb,
Please for your safety remove your email address from your signature line.
Second, and far more important for your safety, your health and your life, do not start the MP until you understand more about it.
The MP is not easy, and osteoarthritis is not an easy thing to deal with. To have any chance of success at all, you must follow the MP to the letter. It has been developed over many years with safety in mind, and mixing it with other treatments or medications is playing with fire.
You're saying you want me to stop the Guai and let the Fibro come back out, after I spent a year squashing it down to nothing?
First, Dr Marshall didn't say that; he said, The good news is that low doses are compatible with the MP meds, provided you cut back the dose to an absolute minimum.
Second, if the Fibro is only being held in check by medication, you may be in for a pleasant surprise, as the MP should deal with it more permanently
I still can't find that magic cheap supply of Benicar folks online talk about.
I'm in Chicago, IL.
Please see How To Obtain Insurance Benefit for Full Dose of Benicar.
Should I stop taking any of my medications?
PAIN CONTROL
How can I control my anxiety and depression?
Arthritis
Dr Marshall often warns how he can't change the way your body works, to fit in with the demands folks want to make of him to change the protocol specially for them. If he were to say yes, take any meds you like, you would be unlikely to get better.
The only Chicago MP Doc is a hippie-dippy and wants me to try all these other alternative herb crap and he doesn't believe in the hiding from the sun part! nor the stopping of the vitamins and supplements! He says taking Vitamin D won't make a difference.
If this doctor is one you got from our lists, please send a Private Message to me or Dr Marshall with his name, as we only know about doctors' willingness to follow the MP from patients' reports.
Here are some more introductory links in case you haven't found them:
"What is the Marshall Protocol?"
Simple Explanations
Phase 1 guidelines
D-metabolites tests
Hypervitaminosis-D Symptoms
Success Stories
Bacteriality - a readable blog-style website by one of our members, with science-made-easy articles, an introductory 90-minute video, and interviews with recovering patients - an excellent introduction to the MP.
MP Memberships Temporarily Closed.
Please ask any further questions here at your own personal thread.
Julia 
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Always consult a physician
Essential Info; FAQ; Julia's story
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Chicago Deb
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Posted: Sat Aug 30th, 2008 21:15 |
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Hello Julia, thank you for that very detailed response.
Yes, I'd read all the links you sent already.
I have been researching, watching the DVD's and talking with others who have switched from the Guaifenisen Protocol to the Marshall Protocol for months now.
I do not intend to follow anything but the protocol as stated, regarless of what this hair-brained doc says to me. But I cannot report him, since he's all I have. I will never allow him to lead me astray, trust me. I've been through all this with that Guaifenisen Protocol.
The pain and debilitation in mind and body that this protocol may cause is not new to me.
And yes, on every protocol there are purists who insist that the patient be clean of all meds to allow the protocol to works at it's optimum level. I can try to do that. But if I get a panic attack I will not sit through it. I will take a Valium.
However the doctor himself has many quotes on this site that say if the drug is not on the list and you REALLY need it, like an NSAID or pain pill, or even a sleeping pill, then he didn't have an outright negative opinion.
I would very much like to begin the protocol on September 1st. What is it exactly you want me to know before I begin? Ok, so I won't take any other meds, that's fine. I was just asking, since Valium was approved for MP use.
What can I do to tell you I'm ready. ...oh Julia please don't make me watch the DVD again! TM seems like a happy fellow, but I think I got the jist the first 2 times we (hubby) watched it. LOL
We don't take these protocols lightly. I study them for months, seek out every negative statement about them, etc, and now I feel I'm ready.
I know I'm about to willingly begin a process that I will likely want to quit 100 times in the first 100 days. I've been through that, I understand all that. I know it's gonna hurt and all the symptoms I've ever felt and more will come to the surface and make me so miserable I'll want to die. I've been there, I've done that before with the other protocol. It was so painful and even brought up past feelings of suicide, it was a post-tramatic chamber of pain and horrors.
Please trust me, I get that. Been there, done that...even video-taped it!
Now please, tell me what is it you want me to know to obtain your blessing?
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Fibro, OA. PH1 wk2 IP showing promise.
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Julia
Advocate (on leave)
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Posted: Sat Aug 30th, 2008 23:21 |
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Deb,
Thanks for clarifying. I was concerned that you were wanting to twist the MP to make it more amenable to you, which in reality would make it dangerous. It is not just being 'purist' to warn you off any meds not specifically allowed, it is for your safety
While it's true that you have to feel the uncomfortable effects of immunopathology (herx) in order to get better, there's no need for it to reach the level you're describing! The meds should be adjusted to make IP tolerable at all times - not just to make life easier, but so that your organs are not endangered.
There's no reason why you shouldn't continue with your MP doc, but it would be helpful for the medical team to be aware of the difficulties with his approach. He's going to have to contact them anyway when you're ready for Phase 2, as it's only available in the Professionals' Forum. To join it he needs to send an email to Moderators@MarshallProtocol.com.
Bon voyage on your MP journey 
Julia 
____________________
Always consult a physician
Essential Info; FAQ; Julia's story
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Dr Trevor Marshall
Research Team
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Posted: Sun Aug 31st, 2008 00:08 |
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Valium is a medication which will not interfere with your recovery, as long as you keep the dose low (<5mg). The Brand Name Valium does seem to work much better in our cohort than the generics do. It is worth paying a little extra, IMO, as you won't be using it much (we hope).
ps: I drop in and out of the forums, depending on workload, but please do not rely on me to respond to questions. As you have seen, my board-reading time is pretty scarce. The Advocates seem to do a better job, in any case
pps: Have you seen the presentation I gave at UCLA in July? It is more up-to-date than the DVDs, and sticks to the Science...
http://vimeo.com/1268542
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Dr Trevor Marshall
Research Team
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Posted: Sun Aug 31st, 2008 00:13 |
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Oh - an afterthought - we need to let your MP Doc know about the special session at the International Congress on Autoimmunity next week where our work on Vitamin D and chronic disease will be discussed. Doc should know that, so that he starts to recognize why this steroid has done so much damage to mankind...
http://www.marshallprotocol.com/forum39/12376.html
And a printed copy of my Bioessay might help, too:
http://TrevorMarshall.com/BioEssays-Feb08-Marshall-Preprint.pdf
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Chicago Deb
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Posted: Mon Sep 1st, 2008 01:10 |
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Over in the Cohort site
"Knochen" writes of his recipe for making invisible zinc,
but I am not allowed to view "his site"
Can someone "cross the aisle", as they say in politics..and give us newbies the wisdom of the wise and wonderful Knochen of the Cohort?
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Fibro, OA. PH1 wk2 IP showing promise.
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Knochen
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Posted: Mon Sep 1st, 2008 01:35 |
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Try http://www.mp-recipes.com/mp_recipes.html - maybe there was a broken link somewhere.
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I can help you understand the recovery process, but only your physician is licensed to give you medical care.
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Chicago Deb
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Posted: Thu Sep 4th, 2008 20:39 |
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Sorry so long of a post, but crucial to me that you read it all.
Well, the doctor's name you gave me for Chicago and I are butting heads, as he instructed me to ramp up the Benicar, vs, the Mino and keeps yacking about rubbery shoes and glucosimine and won't let me get a word in edgewise
and when I told him WE made a little boo boo on my initial marching orders, he just started yelling that "...there are many different Marshall Protocols out there and each person is different and we agreed on this plan," and on and on and
....well he finally just said call the nurse tell her what you need, when you need it and you can do it what ever way you want. I said yes, PLEASE the way Dr. Marshall insists it BE done. So I believe I have access to Benicar and one of the Mino's via his nurse and Phase one should be fine. Except I have no clue if he did the blood test for the Vit D stuff, since he totally blew off that portion of the protocol verbally. ARG!
He DID take 2 vials of blood.
I asked if he trusted his lab to do the frozen part etc. He said he had to look all that up. (not gaining any extra points of trust with me there!) So since he took the 2 vials, does that indicate that he will give me my D1,25, D25 values? Or why else might he have taken this blood, do you suppose? I will call him in a week.
So on to my next idea...
I gathered the invitation letter, the simplest Marshall Protocol description from one of your Cohorts, and a letter from me on why I want to do this now. All very organized very polite and I love this local doc, and I presented this small stack of papers to him, and he was interested until I tried to add the Vitamin D paper in with it....he said no, I will not care to read that one, you can do that portion on your own...ok,....fine... I left him the Physicians guide to Phase One, ...34 pages that he just ws not in the mood to read...
I told him he has a few months to get online and learn, etc. But I don't think his affiliated hospital (Ressurection) will allow a simple neighborhood doc to do this, and most of all he wants to know exactly what the meds are in Phase II and III before agreeing to anything.
I have one more doctor on my list. He is/was my Guaifenisen doc. Rumor has it that his wife has Fibro, so maybe, just maybe he will be more interested.
I feel like a traveling salesperson begging to get the contents of Phase II and III in time, and I really feel like either the 1st doc won't let me read them and will mess me up, or the other 2 will not participate, due to fear, or laziness, or mistrust. Oh and the first doc has been locked out of Phase II and III and is still waiting his passcode. I fear you may have halted that due to my prior negative statements about him. Justified.
I'm willing to travel to wherever. Michigan, Indiana, Idaho, Minnasota, Ohio...if need be.
I need to procure a trusted doctor who will grant me access to the last 2 Phases and the meds therin when my time comes. It would help to know the names of the meds to sell this idea to a doctor in my city too.
I may quickly run out of luck. Any suggestions?
I'm in Chicago, Illinois
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Fibro, OA. PH1 wk2 IP showing promise.
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Chicago Deb
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Posted: Thu Sep 4th, 2008 20:54 |
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Perhaps you all might allow me to see the entire United States participating doctors, since I travel to a few cities more often than others, like San Diego, California and Asheville, North Carolina and some states the plane tickets are much cheaper, ...is this asking too much?
Last edited on Thu Sep 4th, 2008 20:55 by Chicago Deb
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Fibro, OA. PH1 wk2 IP showing promise.
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Chicago Deb
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Posted: Tue Sep 9th, 2008 21:51 |
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Ok, looks like I'm a go.
I've found 2 for sure doctors and have informed my neighborhood doc and gave him reference material, so he know what I'm about to do.
He's used to this since he watched me go from deathbed to running in 11 months on the Guaifenisen Protocol, which he'd never heard of. We have a great relationship, but he's too scared to help out with this protocol. That's ok, I got names from you members and so I thank you.
I just wanted to mention that I won't be starting until after a wedding I have to attend Nov.1st far away from home, so please don't "un-member" me into a "guest" while I'm gone. I'm still here online and reading everyday. just nothing to post yet.
Insurance so far IS covering the Benicar and Minocycline, and I've placed them on auto-refill, so I'll have plenty saved up when I begin. The Pharmacy had to special order the Minocyline, ...I didn't even know you could still get the actual Minocycline anymore.
Hubby still has his pile of reading to get on board, but he's shown no indication that he will be a problem...he just wants to know what I'm getting myself into, and how dangerous it may be, etc. Oh and the cost$$$ of course.
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Fibro, OA. PH1 wk2 IP showing promise.
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dutchEllis
Member
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Posted: Tue Sep 9th, 2008 23:26 |
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Hi Deb,
I just sent you a private message. For some reason I never received an e-mail from the site notifying you sent me a private message in June I think. That's too bad  I haven't been online for months because I never started the MP (yet perhaps, but I'm feeling much better at the moment due to an amazingly strict diet. I'm completely off all my (Heavy duty, e.g. Prednisonole, Methotraxate, Humira injections, etc) meds for many months now ).
But, if you still need an MP doc in IL, I might just have the perfect recommendation for you. This guy is great. I believe he treats 5 patients with MP, as well as himself, which is of course a great plus because he knows what he's talking about and what things may feel like from personal experience. I think all his MP patients have Chronic Sarcoidosis like he does (I do too) and I have also heard that he doesn't always follow protocol strictly, but if you insist, he'll go along  .
Good luck. I bet he'll be able to help you.
Cheers,
Ellis
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pre-MP, currently 40mg/weekly Humira.
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Chicago Deb
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Posted: Tue Sep 16th, 2008 14:47 |
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Hey! Good Morning! How ya doin'? Georgeous in Chicago this morning!
I'm Pre-MP and have been trying to lower my intake of Vit-D: In the dark, proper diet, put the multi-Vitamins away for about 2 weeks.
I felt like absolute crap. Fatigue mostly. Stopped cleaning the house, stopped my exercise, got depressed.
Then I went back on the multi Vitamins and felt great in 12 hours and it's now 36 hours and I have my running shoes on and I'm about to go jog 7 miles right now.
Does this give you any indications one way or another of anything?
It makes me want to buy the vitamins with no D (or A [headaches])
But TM says to rough it without any...or at least until I learn what a naked Herx feels like.
Do I sound like someone who will need that multi with no D?
My diet has always been low carb, but I don't get a varied diet every day. It's all meat one day maybe a handful of peapods once in a while, all eggs the next day. I never get the whole range of foods every day. And I don't see that changing..sorry but I don't want to lie to ya!
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Fibro, OA. PH1 wk2 IP showing promise.
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Julia
Advocate (on leave)
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Posted: Tue Sep 16th, 2008 16:02 |
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Deb,
See Should I wear NoIRs, avoid natural light exposure and eliminate vitamin D before starting Benicar? The fact that you feel bad without your vit D 'fix' is a sure indication that you're on the right track with the MP. 'Vitamin' D is a steroid, and you've just stopped it cold turkey instead of weaning slowly. No matter, you've survived! And now you know Dr M is right.
I can't imagine you getting better without a more varied diet to give your poor body a chance to recover (sorry, but I'm not going to lie to you either!!). The eggs will have to go for a start, as they have D. You can get all the real vitamins you need from vegetables, meat and fruit, without popping pills. This is a former supplement freak speaking! I learned the hard way that supplements do more harm than good.
____________________
Always consult a physician
Essential Info; FAQ; Julia's story
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Chicago Deb
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Posted: Tue Oct 7th, 2008 22:48 |
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I won't be starting until early November. May I get a flu shot now?
Since my herxes may feel like the flu, it would be nice to rule that out.
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Fibro, OA. PH1 wk2 IP showing promise.
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Julia
Advocate (on leave)
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Posted: Tue Oct 7th, 2008 23:09 |
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| See the FAQ Should I get the flu shot?
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Always consult a physician
Essential Info; FAQ; Julia's story
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Chicago Deb
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Posted: Tue Nov 11th, 2008 15:46 |
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Last edited on Tue Nov 11th, 2008 16:48 by Chicago Deb
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Fibro, OA. PH1 wk2 IP showing promise.
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