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fae78
Member
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Posted: Thu May 8th, 2008 16:55 |
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Hi there, I'm posting on behalf of my other half...
My partner has suffered with depression off and on for the last 10 years, around 2 and a half years ago she gave birth to our second child which was all relatively straight forward, after a while she became ill, nothing major a cold or flu, but no sooner had she recovered she seemed to get another bout. We dismissed ti as her being a bit run down, after all having a baby is no easy task I would guess! And so it seemed to go on one illness to another, aches and pains, more and more bad days.
Now nearly three years later and having seen numerous doctors and specialists she was diagnosed with fibromyalgia, although it still didn't lead to any better help or advise.
Her symptoms are that she is in bed all day every day, unable to rise generally until around 4 or 5pm. Even so she is almost constantly exhausted, mostly unable to do a great deal, with even walking up the stairs being a daunting task. She suffers with sensitivity to light and sound, spending all day in a very darkened room, usually also with an eye mask on and ear plugs in. She has almost constant headache or migraine, muscle aches and pains especially in legs, spine, shoulders and neck. For the last three weeks she has also suffered with almost constant nausea and sickness.
Already we have eliminated dietary vit D (she doesn't like most of the foods with vit d in anyway) and other potential sources of problems folic acid, aspartame (or however you spell it).
I'm posting because she has the brain fog and can't take anything in, reading books and watching tv is also becoming a struggle as she can't concentrate. It's a pretty miserable existence for a 29 year old.
She is multiple medications for pain and depression, diazepam, codeine etc. (she has tried other meds but with too severe side effects). and over the counter meds such as ibuprofen.
I'd been looking for a long time for answers to all her suffering and the root cause of what from casual 3rd party observation seems like a compromised immune system. The inmates are running the prison!!
I stumbled upon the Marshall Protocol site almost quite by accident and after some reading it's the only thing which makes sense and links everything together. I discussed the protocol with her and the possibility that it may address the actual cause of the problem rather than just treating the symptoms which seem to be becoming worse as the weeks go on.
We approached her GP (we are in UK) who has agreed to work with her to do the protocol and we are currently waiting for the results of the D tests.
So my questions are these, for anyone who may be able to advise. When she starts on the benicar, what will actually happen?? Is it likely she will begin to herx on the benicar alone? I have read people get cold like symptoms?
Will the benicar make her feel worse or better? and if so how long will it take of feeling worse before she begins to feel better?
If she starts to feel better on the benicar, how much better will she feel or how long before she can start to do basic things again?
I know these are probably difficult questions as it will depend on the severity of disease for each patient. But I'd like to know so I can support her through it. If she is suddenly up and about make sure she does not overdo it or become too eager, similarly if nothing happens I can support her to not be disappointed.
There is also another element to this in how long it will take to get well enough to at least get some day to day life back, we run our own business which as I have spent more and more time caring for our family has pretty much gone down the tube now, I have also run up pretty substantial debts trying to keep things together.
So I am faced with bankrupting our company and will have to get a job, otherwise it won't be far behind that we end personally bankrupt without a roof over our heads. We aren't expecting miracles all she need do is pretty much be able to is possibly get children to-from school. One is seven and is pretty self sufficient, the other is coming up to three so will begin pre school soon, just if she can do enough for me to hold down a job and maybe afford some extra help at home..
or will the protocol make her so ill i should forget the idea of trying to get a job?
we don't have any family around to help, am trying to speak to various govt. benefit offices etc but its a lengthy and confusing process
So just trying to get some idea of what we are in for?
sorry for the long post!
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Julia
Advocate (on leave)
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Posted: Thu May 8th, 2008 20:34 |
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Hi there, 'other half', and welcome!
I love your astute definition of Th1 disease, "the inmates are running the prison"!! You've got the message!
We approached her GP (we are in UK) who has agreed to work with her to do the protocol and we are currently waiting for the results of the D tests.
Wow and double-wow!! - that's some GP you've found  . Very few UK members have been so fortunate. Please post your results in the Preliminary test results forum for analysis. See What to include in your preliminary test results report.
When she starts on the benicar, what will actually happen?? Is it likely she will begin to herx on the benicar alone? I have read people get cold like symptoms?
Will the benicar make her feel worse or better? and if so how long will it take of feeling worse before she begins to feel better?
There is really no way of knowing. I had no reaction at all to Benicar alone, apart from slightly more fatigue. Others have started herxing. Any reaction should be fairly short term until the hormones begin to stabilise - it's usually about 1-2 weeks. Then she starts the minocycline - which again may or may not make her feel better. Most people have a two day cycle of feeling better and worse.
If she starts to feel better on the benicar, how much better will she feel or how long before she can start to do basic things again?
I think you need to face the fact that someone as ill as your partner is not likely to be running around like other people for a long time. She didn't gather this heavy load of bacteria in a day, and she isn't going to get better in a day.
But I'd like to know so I can support her through it.
If she is suddenly up and about make sure she does not overdo it or become too eager, similarly if nothing happens I can support her to not be disappointed.
I think neither of these is very likely. The MP is not a quick fix! On the other hand, small encouragements are likely fairly soon. See CFS/ME Success Stories. (Her diagnosis may not have mentioned ME, but then a lot of doctors don't really believe in it. Fibromyalgia is just the Latin for pain in the muscle fibres, so it isn't really a disease, just a description of symptoms.)
or will the protocol make her so ill i should forget the idea of trying to get a job?
The protocol will not make her ill, her disease will. If she doesn't kill the bacteria, they will slowly multiply and she will get worse. So if she doesn't do the MP, you can expect to be caring full time for your family, fairly soon by the sounds of it. On the other hand, if she does the MP, at least the periods of feeling bad with immunopathology will be productive, and she can look forward to a normal life in the not-too-distant future. See Immunopathology Tutorial.
"What is the Marshall Protocol?"
Simple Explanations
Essential Information About the Marshall Protocol
Marshall Protocol FAQs
Phase One Guideline
Papers for Physicians
Inclusion criteria for participation in ARF phase II clinical study of the Marshall Protocol.
Your questions are welcome. This is your personal thread, pre-MP.
Julia 
____________________
Always consult a physician
Essential Info; FAQ; Julia's story
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fae78
Member
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Posted: Thu May 8th, 2008 22:10 |
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Hi Julia,
thanks for the replys and encouragement. Fortunately we have a good relationship with her GP who is also a believer in complementary therapies.
I approached him with all the information (Physicians guide) which fortunately he took the time to read, and has also registered on the study site. Also we explained that really the current medication gave no hope of cure or of treating the disease. I don't hold with some of the supposed expert opinion that this condition is some how all in the mind, stress related etc, etc. Probably these are factors that can worsen or speed the disease process, but as far as I'm aware you can't think your way to organ failure....
So the medication being perscribed wasn't exactly ideal, all comes with side effects, let alone what the long term implications of being on such medications. Thus better to try and address the cause rather than the symptoms. Better to try and fail as they say.
Personally I think this disease is probably common if not present in all of us, however for most we are able to combat it and lead normal lives unaware of its presence. However with others there seems to be a slow decline until an event or illness results in a tipping point, allowing the disease to establish itself then causing further and faster decline.
The GP's attitude was also that without his help we would be tempted to aquire the MP medications by other means and that we would not be assured of the quality of such medications nor would we get the expert help we'd need. So give us the treatment or else...
Further as I suggested to the Dr I know they have other patients with conditions that can be treated by the MP and it could be a benifical treatment that could then be introduced to others.
So all in all how can a GP say no?
Certainly they should be etihically duty bound to explore curative therapies if they are not interested in healing people then surely they are in the wrong job.
It doesn't matter how people get better, just that they get better!
AndyLast edited on Thu May 8th, 2008 22:12 by fae78
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fae78
Member
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Posted: Fri Jul 4th, 2008 23:15 |
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Hi my partner is currently in Phase 1, it took a good few months to get our GP on board (we are in UK) and then to get the blood tests and results done we got the scripts for the necessary meds, and the NOIR's, unfortunately the study closed the day before we started.
It would seem we are not able to post in the appropriate section on the main study site. Although have submitted an application and am on the waiting list for phase 2.
Anyway things are progressing as expected in phase one, currently around 5 weeks in. Not really got any problem with adjusting meds and I have researched the protocol pretty throughly, also it seems by searching the forum most if not all situations and answers are already there.
I'm aware that our GP is registered, however he's a very busy man so wouldn't like to rely on him completely to research phases 2-3
My question is this when appropriate will we be able to access the phase 2-3 guidelines to proceed even if not formally accepted into the pase 2-3 study??
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Dr Trevor Marshall
Research Team
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Posted: Fri Jul 4th, 2008 23:33 |
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We are still trying to figure out exactly how we move forward from here. Don't panic just yet, and keep watching the sites
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cathys2007
Member
| Joined: | Tue Jun 17th, 2008 |
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| Posts: | 17 |
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Posted: Wed Jul 9th, 2008 01:58 |
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fae78 wrote "Although have submitted an application and am on the waiting list for phase 2."
Is there a special application for phase 2?
Cathy
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Dx Sarcoid-lymph node biopsy/neurosarcoid 12/06/ FMS and IBS 25 yrs/ Narcolepsy/ Osteopenia/ Gerd/ Raynauds/ fatigue, brain fog, muscle pain, fevers, migraines/D12548, d2511/ NoIR jan08/PH1 jul08
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fae78
Member
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Posted: Wed Jul 9th, 2008 11:18 |
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Yes the study is closed to new members.
There is a question sheet to complete for phase 2 if you are in the study.
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fae78
Member
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Posted: Mon Jul 21st, 2008 21:07 |
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Hi there,
it's been a rocky couple of months going through phase one, but have seem to have managed to progress through it. Now up to full pulse dose of 100mg and benicar every 6hrs.
Have found that after 1-1.5 weeks on mino immune system response becomes much stronger, upping the mino dose has helped improve symptoms.
Headaches have reduced significantly. Sickness seems to have gone. Sore throat seems to have become less, or symptoms are more steady.
Still suffering with high fatigue but seems to be improving little by little. Still have dizziness. Muscle ache and pain still quite bad, but painkillers are controlling that.
We have submitted an application for phase 2 some while ago. However I would like to research the phase 2 protocol and discuss this with my GP. We are prepared to continue into phase 2 outside of the study if possible.
If we cannot progress onto phase 2 then what should we do? Should we stay on phase 1 at 100mg of mino? What if the immune reaction becomes too strong?
please advise
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Julia
Advocate (on leave)
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Posted: Mon Jul 21st, 2008 21:42 |
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Fae,
Your doctor has access to phases 2 & 3 already through the professionals' forum. (Please don't confuse an application to become a member of the FDA 'Phase II' clinical trial with applying to progress to phase 2 of the MP!)
It's essential to progress to phase 2 when you are no longer getting any significant immunopathology from the phase 1 meds. Otherwise the bacteria will just re-populate your immune system
Julia 
____________________
Always consult a physician
Essential Info; FAQ; Julia's story
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fae78
Member
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Posted: Mon Jul 21st, 2008 21:57 |
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Hi Julia,
yes my Dr. has access to the phase 2 information, but I would also like access to the phase II forum as well, which as I understand it is currently closed??
I do not need to be in the FDA study should I be posting this on the other forum?
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Julia
Advocate (on leave)
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Posted: Mon Jul 21st, 2008 22:10 |
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Fae,
As you're on the MP independently, you can't post your progress on the study site, and you can't read the phase 2 & 3 posts. The moderators are still working on a way round this problem, as it can be helpful to read of other phase 2 folks' progress when you get to that stage. Your doctor can of course give you a copy of the phase 2/3 guidelines.
Julia
____________________
Always consult a physician
Essential Info; FAQ; Julia's story
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fae78
Member
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Posted: Mon Aug 18th, 2008 12:09 |
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My partner has been on the Phase one treatment now for some months and is at the top 100mg dose of Minocycline. Her immune response is now quite strong which the mino has helped suppress but as it's becoming stronger she is beginning to feel worse.
I have asked our physician to get the phase 2 information but he cannot find it or does not understand what to do. I don't know if he is registered on the physicians site or just the regular forum. He's also a very very busy man so he doesn't have time to sort this out.
All I require is the phase 2 information, medication & dosing schedules or access to the phase 2 forum. We are quite happy and competent to continue without being involved in the study.
Please advise as these delays are becoming frustrating.
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Julia
Advocate (on leave)
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Posted: Mon Aug 18th, 2008 17:34 |
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Andy,
To help your doc, print this out and hand it to him:
Health Professionals are welcome, and will be manually joined into the database after sending an email to Moderators@MarshallProtocol.com listing their desired username and password.
-Note: Screen names which contain a comma within the name are not technically compatible within our system. Note: You may wish to choose a username that allows you to remain anonymous.
-In your email, please include your name, and your professional details, your contact information including phone, email and office address.
We will respond to your request as quickly as possible. Please also feel free to call Dr. Marshall at 805-492-3693
Once he has access to the Professionals' Forum, he should be able to get the Phase 2 details.
Julia 
____________________
Always consult a physician
Essential Info; FAQ; Julia's story
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Aussie Barb
Research Team
| Joined: | Sat Oct 13th, 2007 |
| Location: | Australia |
| Posts: | 138 |
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Posted: Fri Sep 5th, 2008 12:35 |
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Fae
Your Dr has made contact and has been given access to the Professionals' Forum and will receive a letter email from Admin asap.
all best, Barb ...
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fae78
Member
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Posted: Fri Sep 5th, 2008 13:09 |
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| Brilliant stuff, thank you very much for all your help
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fae78
Member
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Posted: Fri Sep 12th, 2008 13:26 |
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OK Dr has been admitted to the phase 2 forum, he is trying to find the phase 2 meds guidelines, dosing schedules etc but is not having much luck.
He doesn't have a lot of time to dedicate to this, so has sent me a load of threads by email but all I'm getting pretty much is member status updates and discussions about web applications using java etc.
Doesn't seem to be any relevant information.
Please can someone give me a link specifically to what the phase 2 meds are, doses and schedule that I can pass to him, even if I can't see it myself??
I really can't understand why this process is so convolutedly difficult, this just seems to make everything so much harder.
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JoshR
Advocate
| Joined: | Mon Aug 18th, 2008 |
| Location: | Sydney, Australia |
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Posted: Fri Sep 12th, 2008 17:28 |
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All your doc needs to do is go to the Private Section for Health Professionals after logging in:
There's a link right at the the top of the list entitled "The Full Marshall Protocol," which he should click on. That will take him to a post with a link to the Phase 2/3 guidelines as a PDF.
BTW, if you're wondering how I know this, I watched my doc download the guidelines so he could print them out for me.
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5/6 CFS criteria, 125D36 Ph1Jul08 Ph2Sep08 25D8(Sep08) NoIRs covered up (except hands) low lux home minimal light exp r/t work
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fae78
Member
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Posted: Fri Sep 12th, 2008 18:41 |
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Thanks Josh,
now have the the full information at last
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Aussie Barb
Research Team
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Posted: Fri Sep 12th, 2008 22:44 |
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| Thank you Fae and Josh. Fae, Your Dr was given this link and Information in the Welcome email he was sent when he was given access to the Forum. It has been re-sent to him by PM also. Thanks, all best, Barb ....
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fae78
Member
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Posted: Sat Sep 13th, 2008 00:01 |
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Thanks all, I think he has subscribed perhaps accidently to lots of topics and has then been inundated with mails.
Personally I'd still like to see some of the member experiences in phase 2 to get a feel for what we are in for, I'm not keen on relying totally on our GP to have read and keep upto date on all the data.
Have a good weekend all
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