posted
Who here has had first hand experience with this protocol? I have researched it all I can, but am still uncertian as to the validity of this course of treatment. If you don't feel comfortable posting about it openly, please feel free to shoot me a pm.
thank for your help -Dave
Posts: 53 | From tampa | Registered: Mar 2006
| IP: Logged |
Dave6002
Frequent Contributor (1K+ posts)
Member # 9064
posted
quote: Q: What about the Marshall protocol?
A: Have had a few patients that have done it. All abandoned as it did not help.
This is from Scott's Hope to Heal Lyme Conference Notes: an interview with Dr.B
Posts: 1078 | From Fairland | Registered: Apr 2006
| IP: Logged |
posted
for starters,these links show survey results of different approaches. there are other, related links that i don't have time to look for right now, but you should be able to launch to them from these links.
I have read through that entire site thoroughly. Of course, people on there might be slightly biased
It sure is an interesting concept, but it seems that at this point it's still just a theory without any real substantiation. Still interested to know if anyone here has stuck with it through the rough times and had any success in the end.
Posts: 53 | From tampa | Registered: Mar 2006
| IP: Logged |
posted
I'm on a break currently from the MP and I have to say I felt better on it then off of it. There are a few here that have posted that they have gone into recovery with it and there are some that couldn't tolerate the benicar and had to leave it.
It is a hard protocol to follow and don't undertake it unless you want to follow the rules. If you can tolerate benicar I think its worth trying.
Posts: 805 | From Utopia | Registered: Feb 2006
| IP: Logged |
quote:Originally posted by jarjar: If you can tolerate benicar I think its worth trying.
This is my biggest concern, as I have orthostatic intolerance with hypotension as it is. I wonder what benicar would do to me.
Posts: 53 | From tampa | Registered: Mar 2006
| IP: Logged |
posted
I'm trying it and experiencing what the MP said to expect, which I interpret as a good sign. I have not been on it long enough to know if it's going to resolve all my symptoms, but I do seem to be getting some relief from joint pain.
I experience herxing at the MP recommended (low) doses of the abx, so it seems to be killing the bugs without the need for large abx doses. Since the abx have to be around for 18 to 24 months to diminish the chances of relapse, I'd rather take low doses than high ones for that duration.
No IVs and mostly tolerable herxing are both big positives about the MP in my book.
The Benicar has had little effect on my blood pressure, and seems to have made the herxing more tolerable.
Probably the only inconvenient aspect of the MP is the need to avoid bright light. But since for years I've been too sick to leave the house much anyhow, this was not a huge deal for me.
Otherwise, the MP is very easy to try as a theraputic probe. When I got herxing from just 25 mg of minocycline, I sensed I was finally on the right track.
Another plus: my stomach, which in the past has had trouble with abx, is tolerating the MP's low abx doses just fine.
But the key for whether the MP may be right for you is to measure your vitamin D metabolites. My 1,25D levels were sky high compared to even conventional norms. Very few things can cause hypervitaminosis D. If you have a high 1,25D value but a low 25D value, the MP says it's likely due to an infection with the bacteria that cause things like Lyme disease.
The bacteria convert 25D into 1,25D at an excessive pace. 1,25D is the active form of the vitamin, and acts as a hormone. When it gets too high, there's a cascade effect on our endocrine system that can trigger many symptoms.
The following link has a list of hypervitaminosis D symptoms, and I'm a match for many of the items. Many Lyme sufferers also report these symptoms:
Have your vitamin 25D and 1,25D levels tested. If they come back unusual, I think the MP is worth considering.
Posts: 727 | From USA | Registered: Mar 2006
| IP: Logged |
bettyg
Unregistered
posted
below search on 1st screen of medical/general support is something asking you how many days you want to go back; it's critical you change this to 60, 90, or 1 yr. for the search to work...
use the search feature above and below NEW POST area.
type in Marshall Protocol, look in MEDICAL, ANY DATE, and leave poster area blank..
There have been at least 4-8 different posts w/many replies on them.
Look also for JOYCE WATERHOUSE's name; she is on this, and has very detailed posts about this. I think that is her correct spelled last name?
IP: Logged |
Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
I spent 45 minutes on the phone with a woman in Florida yesterday who has had great success with the Marshall Protocol. She has been on it for 8 months. She was referred to me by a mutual friend.
I plan to discuss it with my LLMD next week. It seems very complicated and I'm curious what his opinion is.
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
| IP: Logged |
posted
The MP folks say the blood sample for the vitamin D tests must be frozen. Freezing helps produce more accurate results because 1,25D degrades at a higher rate than 25D when exposed to room temperature. Therefore, with an unfrozen sample, the longer the sample sits at the lab before the measurement is performed, the more the results are thrown off.
Supposedly Quest is the only major lab that freezes the sample. Because I've had multiple problems with Quest in the past (lost results, incorrect billing, and more), I used LabCorp instead. LabCorp generally does not freeze the sample.
Even though my samples were unfrozen, I still had very high 1,25D and low 25D. Repeated the test, same results. My ratio was very abnormal. The MP says the high:low ratio would have been even more extreme had the sample been frozen.
This finding was significant because over the decade spent searching for an answer, I've had dozens of tests and they generally came back normal, normal, normal. My vitamin D metabolites were the first thing wildly abnormal.
IMO, implementing the MP is fairly easy: 1) minimize light and dietary vitamin D, 2) take benicar and low dose oral abx on a routine schedule, 3) slowly ramp up abx dose to keep herx tolerable.
The MP's success rate for sarcoidosis patients is very encouraging to me, and since Lyme and sarc bacteria are so similar, I think the protocol shows promise for Lyme. IMO, the MP is worth checking out if your vitamin D levels are abnormal, and there's no explanation other than an infection.
Posts: 727 | From USA | Registered: Mar 2006
| IP: Logged |
posted
Thanks, dguy. I really doubt I could tolerate the Benicar as I already have low blood pressure. Still would like to check out the Vitamin D though.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
posted
I have been on a modified version of MP for about 9 months, and having success. Treatment has been complicated by coinfections, which have slowed down my progress. I think the addition of angiotensin blockade is an important advance in treatment.
Also, I have very low blood pressure also, and have adjusted well to benicar. Good luck.
Posts: 393 | From Washington, DC | Registered: Jun 2005
| IP: Logged |
Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
The woman I spoke to said her BP is something like 90/50 and she is able to function like that.
She has to be very careful about fainting, which I guess goes without saying.
She only recommended Qwest because of the freezing of the samples, I assume.
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
| IP: Logged |
posted
starting marshall this coming week and hoping for good results have not had good results with any protocols until now. many coinfections, virulent strains. will keep everyone posted.
-------------------------------------------------
" The absence of proof is not proof of absence"
Posts: 719 | From Delaware | Registered: Jan 2006
| IP: Logged |
On various boards I've seen people report their vitamin D was measured as low, so their doc put them on vitamin D supplements.
You must be careful: if you have the standard vitamin D blood test, usually they only test the 25D.
Since Lyme bacteria consume 25D, the low test result might be due to that. Said another way, those infected with Lyme are more likely to have a low 25D test result. In that case, supplementing with vitamin D can "feed" the bacteria and actually worsen your infection!
A proper blood test is one that checks both 25D and 1,25D at the same time. If 25D is low but 1,25 high, it's often a sign of infection. Very few other conditions can cause low 25D and high 1,25D.
Posts: 727 | From USA | Registered: Mar 2006
| IP: Logged |
Dr. D also recommends avoiding multi vitamins. This is with regard to the prior post statement that D supplements "feed" the bugs.
Posts: 36 | From Boston, MA | Registered: Sep 2004
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Wink]](wink.gif)
Printer-friendly view of this topic