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Aussie Barb
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Posted: Mon Oct 31st, 2005 01:29 |
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How long does the MP take?
There is no way of knowing for sure. The rules are not hard and fast. The only hard and fast rule is that EVENTUALLY you will have to have used, and no longer react to, any of the antibiotics combos. It will take many years to get to that stage, and you will have been 'cured' years before you reach it.
Typical Timelines
Based on our observation of the progress of our initial cohort of sarcoidosis patients, at about 3 months into therapy, most subjects have achieved sufficient symptomatic relief to guarantee their compliance with the remainder of the antibiotic regimens. At about 6 months, most subjects report relief from fatigue, somnolence and insomnia, and report that their memory is returning.
Useful bloodwork markers are 1,25-D, Alkaline Phosphatase, Triglycerides, and C-Reactive Protein. All should have started to improve by month 6. By the end of the first year, imaging should show reduced adenopathy, and most bloodwork will have returned to within normal range. What tests do I need to monitor my progress on the MP?
Even though most subjects have achieved 'remission' at around 18 months, we currently anticipate that antibiotic therapy will need to be continued well beyond that, until all species have succumbed to the antimicrobials.
Dr Marshall wrote: "The reason the stated length of the MP is changing, is that our goals are changing. When we started this journey we thought that the goal was stability of disease, enough to get back to some sort of social and work life. Now the expected end-point is total recovery, cure. The early adopters just kept on getting better, way beyond anything we ever anticipated.
If you are still worrying about taking the antibiotics for ever, then you have a ways to go. At some point the herx reduces to barely perceptible, the antibiotics become as objectionable as candy, and from that point on you won't care how long you have to take them, because you will focus on your future, and on what it likes to be healthy - an experience most of us have never had before."
Peripheral neuropathy seems to have the slowest resolution, with little progress within the first 6 months.
Dr Marshall says : " It doesn't matter how long it takes. You have started on a lengthy journey, and the extra pain of speeding beyond a comfortable pace will not yield a comparable reduction in the length of the journey."
&: "In any case, the bad news is that you are likely to have herxing for 18-36 months as you work through the phase 3 antibiotics. The good news is that you have been through the worst of the herx by the end of the first 12 months."
& "It is really tough putting your head down and working through the first 12 months of the MP. I think that unless folks understand how dangerous these diseases can be, then there is going to be little hope of success in beating them."
& "I think that I try to concentrate not on the length of time recovery takes, but what would have been happening if I hadn't set out on the path of recovery. That is easy in the Sarc area, because we just have to wander to the other bulletin boards to see dying and dysfunctional folks, who just don't get better when the disease is left untreated. I have put together all my own medical data, chronologically, and graphed the key variables. I can see the steady trend down over 30 years (1976-date). Why would it have changed?"
..Trevor..
Meg wrote:
"We can't give you a timeline to healing. The MP takes as long as it takes. It's best not to have any fixed expectation of how long you will be on the MP. It becomes less complicated as time goes by and the inflammation is reduced. Keep in mind that all palliative medication is prescribed for life and those folks keep adding meds as their quality of life gradually declines."
The length of time of treatment is surely going to be less than the length of time you will continue to deteriorate without the correct treatment.
Once you get the total bacterial load below what your immune system can handle, that is the critical level. It is not solely a linear rollback, once you hit that point then you start making quick gains.
ie. that point will probably be noted with a more rapid improvement in symptoms. You will feel somewhat better at baseline and significantly better during non-Herx intervals.
"Functioning normally" is too subjective to assess and return to full function will be a gradual process.
Dr Marshall: As for those who are "still on it" after 4 years, everybody at that stage (the early adopters) have fully recovered, and frankly, when the herx is no longer a problem, folks tend to set a goal of getting rid of all the bacteria, and not just the ones which caused the clinical phases of disease. Belinda commented at the 2005 Chicago conference, that the result is like getting back 20 years of your life.
Belinda: "I wonder why your doctor is concerned about the length of your treatment. Sarcoidosis patients are on prednisone treatment for years and that drug is known to have horrible side effects. The drugs used in the MP are by comparison benign. "
re Vitamin D:
All of us from the original cohort have healed to the point where we most certainly are "free to enjoy things with Vit D in them." For example, I had fried fish on Wednesday (OK, I know they are 'bad' for me  )
However, this is an entirely seperate thing from whether our body needs 25-D to function properly. I don't think it does, and I have kept using Vit-D free milk and staying away from supplemented foods. This has kept my 25-D low, but the outdoors exposure seems to enable my body to keep the 1,25-D levels at the correct point, independent of vitamin D intake. So I am not convinced the body needs any specific level of 25-D in order to function properly (especially in California LOL). Time will tell, on this issue.
Folic Acid: "Folic Acid doesn't seem to be an issue except when you are really ill. I used to not be able to tolerate Protein Bars because of (I presume) that, but have been gutsing them down for a year (or more) now"
Light: Dr Marshall wrote: "As one progresses through Phase 2, the risk of setback from occasional exposures becomes less and less. Eventually the risk disappears (although you will probably never want to sunbathe again. The only way to find out is to try a few 'baby-steps' and see I usually say it takes 18-24 months to get back to any sort of 'normal' sensitivities, though."
..Trevor..
this post from Dr Marshall
says in part quote verbatim: "I do think it is important that CFS and Lyme patients do face up to the extent of their illness, however. Think about this - it takes 2 years or more for the bacteria to be killed, at the fastest rate your body can kill them. It is absolutely amazing what that quantity of bacteria must have been doing while they were living in your tissues "
Aussie Barb:
There are some who have high immune response and therefore are not able to see the healing as quickly as some others.. It isnt easy being in this situation.. but remembering that the the immune response is the scientific proof of the bacteria being killed is usually helpful.
Annual antibiotic cleanup
The immune system seems to be able to do the cleanup job on its own, once folk have fully recovered. IMO There is no harm in doing an annual cleanup though - but it no longer seems that it will be necessary to maintain good health. ..Trevor..
Continuing Benicar
Benicar becomes purely palliative once the immune system is working properly again. The VDR can activate itself in the normal way, it doesn't need the agonism of Benicar.
Luckily, Benicar can still be used to deal with surges in IP when the immune system finds patches of bugs which have escaped the earlier antibiotics (eg in fibrotic tissue). For those of us that were really ill to start with, there appear to be far too many of those "patches" of bugs popping up for the immune system to go after
..Trevor..
See also:
I'm eager to get well. How can I speed up my progress on the MP?
Why does the MP take so long?
What degree of healing is possible with the MP?
MARSHALL PROTOCOL SUCCESS STORIES Happy MPers
Belinda says...
Benicar forever?
Ms Dale MP 2004
scroll down for Dr Marshall more...
Last edited on Mon May 12th, 2008 19:38 by
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Aussie Barb
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Posted: Sun Feb 12th, 2006 21:18 |
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Dr Marshall wrote:
Seeing the MP as just another journey is a sure way to fail, as it takes an understanding of the pathogenesis of Th1 disease in order to understand how to reach recovery. When you have that understanding of the science, there is no way you can equate the MP with anything that has come before it.
It is not a journey to remission, if you try and relax at remission then the pathogens will catch back up with you.
The only folks who have failed to complete the journey to recovery are those who drop out along the way, and those who decide that I am incorrect about the need for compliance with fastidiously lowering Vitamin D ingestion/exposure, and cutting out the supplements of the past.
How long? That depends on compliance and how sick you are at the start. Take a look at the progress reports, that is what they are there for.
A word to anyone wanting to see how others are getting along before they consider starting their journey.
To those persons - please don't start now.
Wait until you are sick enough to realize you have two choices, recovery or a lingering death. Only at that point will you have the fortitude to overcome your doubts. If you don't understand the disease then you are better to wait until we can publish "CFS for Dummies," in about another 10 years.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Posted: Fri Apr 14th, 2006 21:54 |
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Attempts to compare disease states are futile
I have repeatedly said that there is no fundamental difference between the disease states, or the recovery trajectories, of CFS and Sarcoidosis patients, when all other things are equal.
One of the things which is not equal between the groups is the manner in which CFS patients have been convinced that it is within their mind-fogged brain-power to understand all that I understand, and to self-diagnose, self-medicate, and endlessly ponder their navels, instead of getting down to the business of healing.
There are patients who are very sick from CFS and patients who are very sick from Sarcoidosis. Others are less sick. It does nobody any good to try and micro-manage any supposed differences beyond that. I personally am sick and tired of pundits who pretend to tell me how sick my own mind (and body) has, or has not, been from Sarcoidosis. Truth is - you just don't know. You are just guessing. Please focus on the issue at hand - please just focus on getting better.
..Trevor..
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Aussie Barb
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Posted: Sat Jun 10th, 2006 04:44 |
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25D is immunosuppressive
Dr Marshall wrote:
Many people who are new to the MP have high levels of 25-D in their bodies. The immune system cannot really start to do its job properly until the 25-D level falls below (preferably well below) 20ng/ml.
The half-life of 25-D is from two to 6 months, so these high 25-D levels might hang around for a while. I usually find folks able to tolerate fast ramping of antibiotics are those who have high levels of 25-D. The herx should eventually ramp up, as their 25-D drops.
Now, OTOH, people who do not carry as heavy a bacterial load do not suffer so much from the antibiotics, either. There is no doubt that folks who are the most seriously ill suffer the most, but also seem to gain the most as they recover each lost faculty.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Posted: Mon Aug 28th, 2006 20:57 |
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Recovery goals change as progress continues
My long-standing GI symptoms were not dealt with until late in my recovery, beginning about year three. Your mileage may vary. I took a "big picture" view that as long as my symptoms were generally improving, I was doing great.
I often took my doc a list of problems that had been improving since my last visit. Otherwise, it may be difficult for the doctor to understand why, when you've had so much progress early on, you are still eager to remain on the therapy.
My assessments of progress got much more detailed as time went on. Early on, I was concerned about fatigue and full-body burning pain. Later on, I was concentrating on reducing the number and intensity of aching twinges in my wrists, tibia and ankles. I began assessing my range of motion in problem areas and slow retreat of peripheral neuropathy, something I would not have thought of as goals early in my recovery, when I was concerned with pain, lack of energy, ability to breath and mental clarity. I suspect your doctor may have a similar perception and perhaps may not realize how ill you actually were and how much recovery you can make with the proper therapy.
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Posted: Thu Nov 2nd, 2006 05:45 |
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If one keeps a longer time frame perspective, the progress becomes very apparent.
Injuries heal much faster after being on the MP for awhile. Last winter I sprained my right ankle severely. This was after sitting for awhile and on arising having no feeling or function in my leg (neurological Herx). I expected at least a 3 to 4 week recovery as it had immediately swelled and went black and blue. By the 3rd day it was completely recovered.
Herx reactions change in quality as one progresses. Less fibromyalgia pain and less generalised fatigue and brain fog but more intense and episodic symptoms in joints, brain function, nerve endings, moods etc. It can be surprising and at times discouraging but if one keeps a longer time frame perspective, the progress becomes very apparent.
Greg Blaney, MD
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Posted: Thu Nov 2nd, 2006 05:49 |
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It will probably take you 1-2 years to get "disease free" from being "symptom free."
The reason is that we really don't know how sick we were until we get healthy, and what we regard as "symptom free" is usually a much lower level of functionality than "health."
60% of 'controls' had culturable CWD in their blood in the recent NIH ACCESS study. The Relman Lab at Stanford is finding similar infection rates in 'controls' using PCR. So your specialist is drawing his knowledge from a biased sample, I am afraid Similarly, the "adverse events" reported for antibiotics which work against the CWD are all due to the immunopathology. See my plenary presentation at Chicago 2005 for more insight into this...
..Trevor..
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Aussie Barb
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Posted: Mon Dec 11th, 2006 21:49 |
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Members experiences
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I don't care how long it takes
Try not to push during the Holidays. I think I was on Phase One 6 or 8 months and then it took a year to get to full Phase 2. Then I pushed too much and it got overwhelming for awhile and I went on mod phase 2, about 3/4 into 2nd year I felt I rounded a corner.
So I don't think it matters if you plod or not, you get better. Now my attitude has changed. I know I'm so much better but I don't care about how long it's going to take to get totally well. It's like the desperation has gone away. It's oh well it takes as long as it takes.
But when the herx was hitting hard there were days when I just wanted to push and get it all over with and thought geez how long do I have to put up with this. Right now I'm 2yrs 4 months in and it's not blurry anymore. The normal days and the immunopathy days are more defined and easier to control. So you're doing great and just do one day at a time and soon you will be walking Disney and saying Wow I can't believe I'm doing this. ~Melinda
See also Melinda Progress Report/Lyme 2 yrs
Moderator's note: It is advised to progress to two antibiotics after 3 months or so even if you are unable to ramp up to 100mg of minocycline. Ask a moderator if you need assistance.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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