Who here tried marshall protocol and felt worse on it? Who tried and felt no change? How long did you guys manage to stay?
Posted by bettyg (Member # 6147) on :
coltman,
click on search on top
type in marshall protocol medical subject any date leave membership no. blank; click search
read all posts/replies; should be 20 plus...very lengthy replies on several from what i can remember.
Posted by coltman (Member # 21272) on :
Lengthy replies , thats correct, I need simple answers though : herx, no herx . How long used for
Posted by treepatrol (Member # 4117) on :
Personaly I think its not safe. And the only reason the second part works is the low levels of abx's like minocin.
Posted by swinderswalt (Member # 22016) on :
I have started the Marshall Protocol. I am only on the Benicar right now beacuse I have had the flu but I beging my 1st antibiotic of Minocycline on Sunday.
I have experienced some herxing on the Benicar but Very mild for me. My doc says it should all begin once I start antibiotics.
My doc says he has treated several with Lyme by MP and has seen vast improvements.
Swinderswalt
Posted by lightparfait (Member # 22022) on :
Start with the Allergie Immune Therapy before trying the Marshall Protocol. The AI therapy will change the terrain in the DNA, so your body can finally communicate correctly and input, recognise and pass information. Check the threads here for AI on lymenet. It corrects things that the Marshall Protocol only further disregulates. YOu can choose to fix the main underlying problems that keep your immune system from functioning properly..or just take supplements to manage the symptoms better. Your choice.
Posted by GiGi (Member # 259) on :
totally agree with Lightparfait.
Posted by dguy (Member # 8979) on :
What I like about the MP is that it is the only therapy that takes into account the disregulated vitamin D levels that so many of us here have. It's a long process, years for most. Benicar is great for keeping herxes tolerable. I've experienced resolution to several previously chronic symptoms. I'm not yet finished, but their predictions have come true for me.
Posted by lightparfait (Member # 22022) on :
Vit. D regulation can occur naturally with the Allergie Immune therapy.
Posted by coltman (Member # 21272) on :
quote:Originally posted by dguy: What I like about the MP is that it is the only therapy that takes into account the disregulated vitamin D levels that so many of us here have. It's a long process, years for most. Benicar is great for keeping herxes tolerable. I've experienced resolution to several previously chronic symptoms. I'm not yet finished, but their predictions have come true for me.
How long you stayed on it so far? What were your vit D levels?
Posted by dguy (Member # 8979) on :
It took about 3 years of MP treatment for me to reach what they call Stage 5, which is the final burst of proper immune system activity. I don't recall my exact D values, but the ratio was around 4:1 1,25D to 25D.
Reportedly the MP works best for those with the highest D ratios, and mine was way up there. I had independently discovered the vit D connection prior to learning of the MP. When I saw MP's scientific explanation for what was going on and it matched my experience, I was convinced, and so far so good.
Posted by Myco (Member # 9536) on :
But you have forgot to mention that NO ONE on the Marshall Protocol has been able to get off the antibiotics or Benicar without relapsing. Might as well just go on low dose pulsed Minocin and Zith and call it a day.
Also, I think it's very dangerous to push Allergie Immune BEFORE someone has tried antibiotics to cure Lyme. We have no concrete results there and god knows there have been many promises of cure all alternative treatments on this board that lead me and many others here astray and delayed antibiotic treatment. THIS IS DANGEROUS IMHO.
Posted by coltman (Member # 21272) on :
quote:Originally posted by Myco: But you have forgot to mention that NO ONE on the Marshall Protocol has been able to get off the antibiotics or Benicar without relapsing. Might as well just go on low dose pulsed Minocin and Zith and call it a day.
Well there apparently quite a few people off abx.
quote:
We have no concrete results there and god knows there have been many promises of cure all alternative treatments on this board that lead me and many others here astray and delayed antibiotic treatment. THIS IS DANGEROUS IMHO.
ABX offer no cures either. I am really carefully evaluating abx options, initially I was really open to do aggressive abx , but after 3 months of research I am thinking that many abx protocols have serious (and dangerous) flaws in them.
MP does look really benign side effects wise compared to standard abx course, therefore I am inclined to give it a try
Posted by Myco (Member # 9536) on :
WHO? NAMES? None of them are off the meds. Marshall himself is not off the meds!!!!
You should follow the MP threads first. I did 2 yrs of MP research before deciding to go with Dr. B Treatment guidelines and I only have 2 lingering symptoms after 50-60 to begin with.
Many have been cured or gone into remission with combo antibiotics, read the success stories.
I know many on this board and other boards who did MP properly for 3 yrs and finally abandoned it.
FInd and LLMD and trust him. That's my 2 cents.
Posted by Cold Feet (Member # 9882) on :
Hey all, good comments as usual. Here's my 2 cents in short form:
- Started MP in October of 2006 when I was bed ridden with no other options. - Herxed heavily throughout but made steady gains. - Stopped antibiotics in Febr. Of 2009 because of high candida. - Added all kinds of other antifungal and antimicrobials. Started enzymes then too.
I've made amazing progress and now have good cognitive functionality. I made tremendous gains this year, which I attribute to:
- Staying on Benicar (never stopped, but can taper down with no problem); - Enzymes for their antifungal properties and especially their ability to dissolve some biofilms; - Continuing liver cleanses every 2-3 months, which are still providing "nice, interesting output!"
I have so much more to share, and will do so next year in vivid detail.
[ 09-24-2009, 08:39 PM: Message edited by: Cold Feet ]
Posted by Cass A (Member # 11134) on :
Well, I'm not going to answer the original question, but here's my 2 cents!
After treating with herbs, I found out about the MP and had my D levels tested. 1,25 D was out the roof! And, I definitely had symptoms of D disregulation, including hypoactive thyroid that wouldn't correct. I cut out all Vit D-rich foods and Vit D supplements and started wearing the NoIR sunglasses. My D levels became more normal, and some symptoms went away.
But, the LLMD I went to because he supposedly did the MP had taken all but two of his patients off it.
So, I did 7 months of Mepron/Zith, with the resolution of some symptoms--no more night sweats, for sure!!
And, I found out that I was already taking nearly every one of the KPU supplements, with good results! LOL!!
Then, I found out about Allergie-Immun, and am now on my 5th or 6th round of drops.
Once the dust settles from THAT, I'll re-evaluate.
By the way, my LLMD now says he thinks I may be a candidate for the MP. Who woulda thunk it??
Best,
Cass A
Posted by dguy (Member # 8979) on :
Coltman - I had similar concern about high dose abx. Our immune system is the real workhouse here, and is designed for clearing out infection, so I want it doing the main job, while abx provide some assistance.
Since Bb reproduces so slowly, we need to be on abx for an extended time (probably 2 years minimum), regardless of the dose. Low abx doses have generated all the herx I can tolerate, so IMO why take any higher dose? Plus the low abx doses have not caused me yeast problems.
Posted by Myco (Member # 9536) on :
I will say this again: No one at MP site is off the meds, even the old timers like Marshall himself. They take "breaks" but then go back to them. They call it a "cure" which is very misleading in my mind.
Go to Roadback site. Just as many or more get well on low dose pulsed MIno/Zith. When the body is infected the D dysregulation more likely happens for protective reasons. Inflammation as a response to infection. When you lighten the load the D problems correct themselves.
There are so many on this site who think antibiotics are not going to help them per Dr. B guidelines but then there are so many patients who are NO LONGER HERE who followed Dr. B guidelines and got well.
Don't let the patients who don't listen to their LLMDS fool you. Find a good LLMD and do what he tells you. If that fails, THEN look elsewhere.
Posted by coltman (Member # 21272) on :
quote:Originally posted by Myco: I will say this again: No one at MP site is off the meds, even the old timers like Marshall himself. They take "breaks" but then go back to them. They call it a "cure" which is very misleading in my mind.
From what I heard from MP followers many are off abx. A lot still take benicar though. - If they are right about its safety profile I dont see it as a big deal though. Benicar and abx in small doses is a lot different than mega doses of abx (if doing per Burascano guidelines)
quote: Go to Roadback site. Just as many or more get well on low dose pulsed MIno/Zith. When the body is infected the D dysregulation more likely happens for protective reasons. Inflammation as a response to infection. When you lighten the load the D problems correct themselves.
Yeah I do wonder too if MP success is due to abx alone.It is proven that abx do have some effect even in low doses
quote: Don't let the patients who don't listen to their LLMDS fool you. Find a good LLMD and do what he tells you. If that fails, THEN look elsewhere.
I am not blindly listening to anyone anymore. I will hear other people input , but I will not act based solely on adviser's authority. Unless there is logic and sense behind it.
For one I seriously question now why LLMDs are prescribing IV Rocephin, it is powerful immunosupressor and seems it is not much different than giving steroids they strongly advocate against.
Posted by lightparfait (Member # 22022) on :
Have heard that many have died on this protocol. Some should not attempt this at all, but some seem to get symptom relief, but can't seem to find anyone who is in total remission from doing this.
I would do this as a last resort, just to get some sort of quality of life, after following protocols with proven success before moving to this.
It's still experimental.
Seems you need to stay on some sort of maintenance program with this including long term abx.
The goal for all lyme patients should be remission with no abx and a full body detox to help your immune system get burden free and work on its own.
Many remaining symptoms after co-infections are addressed are detox related to taking abx for a very long time, or toxins that you actually had before acquiring all these things. The remaining symptoms may not be lyme at all at that point.
Gotta try the longer healthier route to get lyme free the longer you are on protocols like the Marshal. Will take time, and most are not patient enough to do this, so they stay on it.
Posted by lightparfait (Member # 22022) on :
Also, I do believe it is important to do abx for the co-infections prior to A.I. Therapy if you have severe symptoms and need relief and a quality of life just to get by...
YOu may not need to address the lyme at all after that. This is what many of us have found...we took an abx break before lyme only treatment, and never needed the IV...as the detox and AI did the trick for lyme remission.
So I say, detox and start the AI therapy after your co-infections are gone, or at least symptoms relieved.
Have seen amazing results...I am now lyme free. Not just from the AI, but from ridding my body of toxins with detox at the same time...my immune system is not struggling any more.
The key to any therapy...is to know when to use it, and stop it, and clean up your body.
The AI therapy is only a system regulator... Marshal protocol is the opposite.
AI is helping many other things besides the viruses and bacteria....it is especially amazing for children who inherited our poor terrain, and when they get the tick bite....all hell breaks loose. The AI helps clear pathways...
Not trying to convince anyone...just concerned about newbies relying on a dangerous protocol, like Marshall.
Posted by B R H (Member # 12159) on :
I was on MP for 18 months or so & have been off all MP medications for about the same amount of time. It went pretty much exactly as they predicted.
My ANA & babesia tests both just came back negative!
I've got some other health issues to deal with in the short term (broken bones, shoulder injury, etc.) but will probably see if the Lyme tests have changed as well at some point. I won't feel comfortable calling it a cure until I regain my former fitness which will be a while now. I was making good progress on that front until I crashed (literally) in May.
Posted by Lonestartick (Member # 2151) on :
I was one of the earliest Lyme adopters to utilize the MP. I started in mid 2004 and progressed until I was asymptomatic. As my health normalized, so did my light and dietary D tolerance.
I began weaning off the MP a while back and discontinued all the MP medications about a year ago. So far, so good... I'm not showing any signs of relapse, nor am I feeling as if I need to pursue any antibiotic or herbal treatments for Lyme and/or co-infections. I won't consider myself a success until I'm 5 years out, but I no longer feel worried about relapse.
I was lucky because I fit the model for D-dysregulation and I responded pretty much as predicted. With past ILADs based treatments, I would get only so far and then relapse. I could never reach a point where I really felt asymptomatic. My doctor finally considered me a treatment failure. As I progressed through the MP, I began to be able to take breaks and feel better without relapsing. Once I was asymptomatic, I felt I could transition off it: At that point, I was pleasantly surprised that I was able to do so easily.
It's not the right protocol for every one. Some Lyme patients have had big setbacks as a result of trying it. So, if it's something you're really interested in, you might search Lymenet and read all the past discussions so you can see the pros and cons for yourself. I've included more details about my own experience in past posts - as have others who have shared valuable cautions.
Posted by Keebler (Member # 12673) on :
- I was just starting to test out if I could tolerate the MP and tested Benicar. In addition to major increase in chronic vertigo, I got a major kidney attack. Not for me.
Others, however, seem to do okay with Benicar. It was a sledge-hammer in my case. -
Posted by Myco (Member # 9536) on :
BRH,
If you crashed from exercise I would say you still have some treating to do. This is why I am upset (no offense to you!) that some of the moderators there print success stories on patients who say they are better and then crash or move on to another treatment. I could site dozens of examples.
If anyone is scared to do high dose regimens I would whole heartedly suggest doing pulsed mino/zith and seeing how you respond before getting involved in full on MP.
Posted by nomoremuscles (Member # 9560) on :
Coltman,
Here are some old links of MP discussion.
This is a therapy that works very well for a small and select few (for reasons unknown), pretty so-so for most, and extraordinarily crappy for the rest.
If you fall into the first category, it may save your life. If you fall into the second you will likely flounder for years in the dark, maybe getting a bit better here, a bit worse there. If you fall into the third category, it most definitely will ruin whatever life you have. Trust me.
The problem is who fits in which group? And for that question, there is no answer because the leader wears blinders and is convinced it will heal everyone if just they listened to him and kept up with the program for the ten or more years required (never mind those silly complaining patients who get much worse!).
They are your dice to throw.
On these links you will see reports from both the MP winners and losers. Of particular interest, in my opinion, are the comments of Lonestartick. This is a patient who has had spectacular success on the program, and who's also had a privileged view of the inner workings of this group, a group that is not terribly transparent or ethical in their dealings -- this may put into perspective some of the "data" offered at the various MP sites.
You've misunderstood my use of the term "crash!" I meant it in the very literal sense - as in crashed my bike & broke a bunch of bones among other injuries!
Posted by cjnelson (Member # 12928) on :
BRH - sorry to hear about your WRECK! That is too bad...hope you heal soon!!
I have been on MP going on about 1 year now. I am in the final phase and struggling getting to the top of it BUT my progress has been fantastic so far over all.
I did herx on benicar alone and it took a while to get through that. It was slow, then fast, then slow, then fast, then slow again, now.
The key, for me, has been listening to my body and staying slow when I need to.
A year ago I couldnt work a full work week without a crash...3 months ago I opened/started a 2nd company (probably attributing to my NOW slowing in progress and struggle to be honest and fair here!!)
My D levels were VERY off!! and I too found MP because of the D test results as a fluke with my daughter.
Also, a weird story to share, a friend of mine who I have sworn had Bb infection, was taking benicar for unrelated MP treatment and was dx was an infection and was put on mino. He had such a terrible reaction (herx) that he was put in the hospital.
They thought he had a terrible infectino and started pumping IV abx...ironically he ended up on all the MP abx and it about killed him because ofthe doses. SOOOOO they stopped everything and within 1 week he was improved and 2 was released.
THEN we find the MP info - and I was further convinced that he was infected and insisted he get tested because of it...he did - he is...
I mention this because one has to be very very careful with the dosing. It must be followed and cannot be pushed...
but, for ME, I can say, without a shadow of doubt...
it works! :-)
And I have talked with several who are OFF abx with no relapse and yes, many do stay on benicar but that is becuase it gives benefit to the immune system, not because of relapse.
And yes, some do go on to do maintenance abx because it is recommended...we have to remember that the protocol treats many things, not JUST Bb INFECTIONS..it gets lots of critters and if you are alive and living the body continues to collect critters!!!!
So i dont see an issue with maintenance therapy for the rest of my days if I get the imbalance in my system taken care of. i will gladly do it to keep it all in check!
:-)
my 2 cents....
Posted by Myco (Member # 9536) on :
BRH - Sorry about the crash : )
Posted by Keebler (Member # 12673) on :
- cjnelson -
WOW ! Fantastic to hear.
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For anyone who is considering the MP, mid to late autumn would be the best time of the year to start as special sunglasses are required as is staying out of the sun. -
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