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Dr Trevor Marshall
Research Team
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Posted: Sun Jan 27th, 2008 20:03 |
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Thanks Julia. Another advocate of high-dose IV antibiotics, I guess. Looks like the book is running late, too. Maybe his Lyme isn't exactly 100% in remission
Anyway, I will call him tomorrow
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Washed Out Nurse
Member
| Joined: | Tue Jan 22nd, 2008 |
| Location: | Oklahoma USA |
| Posts: | 15 |
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Posted: Sun Jan 27th, 2008 21:46 |
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Thanks for following up on my rant and rave. I am truly sorry for going off the deep end. It is really hard to do something that one thinks is right when your closest friend keeps throwing roadblocks in the way. I would be interested to see what you find out tomorrow.
Thanks again,
Washed
____________________
Diagnois: Fatigue; Post Lyme Disease Syndrome
Symptoms: Fatigue, night sweats, head pain, burning in thigh, severe hand pain, brain fog.
Lab: 25-Dihyroxyvitamin D=45ng/ml, 1,25-Dihydroxyvitamin D 54ng/ml, CRP=0.2mg/dl
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lady goDarker
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| Joined: | Thu Dec 6th, 2007 |
| Location: | USA |
| Posts: | 20 |
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Posted: Mon Jan 28th, 2008 00:31 |
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Hi WasHedout, Man! it is so hard taking care of your wife while you are sick. I've been diagnosed with lyme, babesia, bartonella and have been acutely ill for 10 years. I was bit in 70's. I have done the IV route three times during this past 10 years, the longest span for 16 months. I have only been doing the MP for 1 week. benicar only. I look at each day on the MP as money in the bank...days where I would feel like poop anyway, on the MP I am actually going to be cashing them in for healing.
I have experienced the guilt for having been sick for so long adding much stress but really, it is not your fault. I imagine your wife only wants what is best for you and when there is such disagreement in the tickborne illness professional community as to how treatment should be, it makes it more challenging to 'believe' in any treatment protocol.
Your insight about the support one feels from those involved with the MP and wishing you might have had similiar support when doing IV, and seeing your lyme doc every six months talking to your doc every month at a fee, at least for me...is one insight I can surely agree with. I feel bouyed and embraced, here at MP and no one has sent me a bill, yet.
My husband, who totally loves and supports me in everything, put out his back, seriously, the week before I was to start the protocol. I anguished over starting the MP, thinking its going to be too hard on everyone. I made a decision out of love, for myself and for him. I want my health back so bad. I want to be able to do the things I used to do. I have given my whole 50's decade to this illness. I am ready to work hard to get my health back. I can only suggest and hope that you will do things for you, so you can be there for your wife.
Blessings and good luck, lady goDarker/margaret m
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mindymplol
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| Joined: | Sat Oct 20th, 2007 |
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| Posts: | 17 |
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Posted: Mon Jan 28th, 2008 00:54 |
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Hi WashedOut,
My daughter has had Lyme for several years but was just diagnosed in Oct. My LLD read about the MP about the same time I did. He was actually very willing to try this because he said that throwing everything he had at chronic Lyme he only had a 30 -40% success rate. One of the reasons the mainstream medical community doesn't treat with IV antibiotics is that the success rate is only slightly above the placebo rate. (30-40%) I read one MD say they think chronic Lyme may actually be an autoimmune or inflammatory condition. The best part of the MP for us was we didn't have to become mired in the Lyme controversy. After all, what most of us really want is to get well. I have just heard too many people who use IV ab. who have to do them over and over again. We had a LLD in our state have his medical liscense suspended because one of his patients had died. Others were unable to eat real food after long term IV ab use. And quite frankly from what I found during my research pre-MP natural remedies have an even poorer success rate. I can't imagine where my daughter would have ended up if we had kept taking fish oil and Vit. D supplements.
We have not been on IV ab. so I know our experience is different than yours. But my daughter had almost immediate improvement just from limiting D. I figure if the MP doesn't work I can always look at other options. But quite frankly when I compare where my dd is now compared to 1 year ago at the height of our symptoms I think we will be long term MP participants.
Wishing you the best,
Mindy
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Mindy (preMP) mom of Caitiegirl on MP since 10/07
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Washed Out Nurse
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| Joined: | Tue Jan 22nd, 2008 |
| Location: | Oklahoma USA |
| Posts: | 15 |
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Posted: Tue Jan 29th, 2008 16:42 |
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I don't mean to change directions midstream but this thought just occured to me. Am I going to be able to work full-time? If that isn't a possiblity that is just one more roadblock at home. I am pretty sure that I can stay covered and wear the glasses inside. I work at a computer for 8 hours a day and the people I work with are pretty understanding. They are putting up with me now being irritable and hurting all the time so I think that after they get done giving me a hard time for awhile (in fun) that things will adapt nicely. Any thoughts, advice, or other comments.
Thanks, WON
____________________
Diagnois: Fatigue; Post Lyme Disease Syndrome
Symptoms: Fatigue, night sweats, head pain, burning in thigh, severe hand pain, brain fog.
Lab: 25-Dihyroxyvitamin D=45ng/ml, 1,25-Dihydroxyvitamin D 54ng/ml, CRP=0.2mg/dl
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Knochen
Advocate
| Joined: | Wed Oct 17th, 2007 |
| Location: | USA |
| Posts: | 224 |
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Posted: Tue Jan 29th, 2008 17:33 |
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I've been able to work full time in an environment similar to what you describe since beginning the MP 20 months ago. If anything, I have performed better and missed fewer days than I would have pre MP. It's very doable, but you will have to learn how to keep the herx balanced between the most you can tolerate and the most you can tolerate while still being of use at work. There are various tools in the toolkit for managing your response level. That's the nicest things about the MP , the control!
Don't let the work situation scare you off, you should be OK. You might have to go a little slower than you would if you had the ability to really bang away on the bugs. You'll still get better. Co-workers become immune to the glasses after a very short period. 
____________________
I can help you understand the recovery process, but only your physician is licensed to give you medical care.
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Washed Out Nurse
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| Joined: | Tue Jan 22nd, 2008 |
| Location: | Oklahoma USA |
| Posts: | 15 |
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Posted: Tue Jan 29th, 2008 17:47 |
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Thanks Knochen,
I appreciate the vote of confidence. The way I look at it is that I have been working or sometimes just taking up space but people are very supportive here at work. We just signed a new contract so the leave time might be the issue as have pretty much started over in accrual. I have let my supervisor know what is going on and what I am thinking about starting and she is very supportive also. I work now with a pain level sometimes in the 8-9 range so I hope that it doesn't get worse than that. It is amazing how high one's pain tolerance can go up. I am trying to rig up a headrest for my office chair as it doesn't have a very high back. Thanks again for responding, I truly appreciate the support. WON
____________________
Diagnois: Fatigue; Post Lyme Disease Syndrome
Symptoms: Fatigue, night sweats, head pain, burning in thigh, severe hand pain, brain fog.
Lab: 25-Dihyroxyvitamin D=45ng/ml, 1,25-Dihydroxyvitamin D 54ng/ml, CRP=0.2mg/dl
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Washed Out Nurse
Member
| Joined: | Tue Jan 22nd, 2008 |
| Location: | Oklahoma USA |
| Posts: | 15 |
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Posted: Wed Jan 30th, 2008 12:36 |
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New Question, my doctor said that if I register with the website and fill in my information like dx, symptoms, things like that I would be monitored. My question is that done here or is there someplace else in the website that I need to go?
thanks, W
____________________
Diagnois: Fatigue; Post Lyme Disease Syndrome
Symptoms: Fatigue, night sweats, head pain, burning in thigh, severe hand pain, brain fog.
Lab: 25-Dihyroxyvitamin D=45ng/ml, 1,25-Dihydroxyvitamin D 54ng/ml, CRP=0.2mg/dl
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Knochen
Advocate
| Joined: | Wed Oct 17th, 2007 |
| Location: | USA |
| Posts: | 224 |
| Status: |
Online
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Posted: Wed Jan 30th, 2008 13:58 |
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That would be the http://www.marshallprotocol.com website. If you haven't signed up there already, you'll have to register there as well, preferably using the same username for continuity. That's the study site where those on the MP make their reports and get followed by the staff. This site is intended for those who are just investigating the MP. It had to be split off from the other site becasue there was just too much traffic.
Last edited on Wed Jan 30th, 2008 14:00 by Knochen
____________________
I can help you understand the recovery process, but only your physician is licensed to give you medical care.
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Julia
Advocate (on leave)
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Posted: Wed Jan 30th, 2008 14:29 |
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Washed,
I'm going to give you some more links to essential information to prepare you for the MP. I realise you've probably found most of them by now, but just in case anything has been missed...
"What is the Marshall Protocol?"
Simple Explanations
Diagnostic test for the MP: D-metabolites tests
Hypervitaminosis-D Symptoms
Success Stories
Before You Begin the Marshall Protocol
Check-list before starting the MP (click on each link):
NoIR glasses ordered.
Get D tests done and post results in the Preliminary test results forum for analysis. See What to include in your preliminary test results report.
Eliminate vitamin D from diet.
Eliminate all supplements.
Assess any other medications you're taking, with your doctor and the guidance of our medical moderators (post them along with your test results). Take care - some meds can't be stopped abruptly. If you've been taking steroids, see Weaning from steroids, and you need to post in the Weaning From Steroids Forum.
Darken your home and restrict your daytime outings to the essential only, well covered up, using zinc oxide sunscreen on your face.
That's it... when your NoIRs arrive, you're ready to go.
As Knochen says, the main study site MarshallProtocol.com is for the clinical trial of the MP. When you start taking Benicar, go to the main site and start a new thread ('Washed Out Nurse on Benicar') in the Benicar only Forum. This becomes your Progress Report, and will be monitored by a medical moderator with years of experience with the MP. Post regularly (at least once a week, and more at the start or if there are any problems).
Your doctor (if he hasn't already) might like to join the private Health Professionals' Forum, where he can discuss medical issues and contact Dr Marshall.
Julia 
____________________
Always consult a physician
Essential Info; FAQ; Julia's story
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Washed Out Nurse
Member
| Joined: | Tue Jan 22nd, 2008 |
| Location: | Oklahoma USA |
| Posts: | 15 |
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Posted: Fri Feb 8th, 2008 15:46 |
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Thanks Julia for the information and how to use it. I was just stumbling around trying to figure it out by myself. On a down note, I may be saying so long to the MP as my insurance won't pay for the Benicar and no matter what I say or do I cannot get family support at the moment. So unless something changes in the near future this will no longer be an option. I do have a question for Dr. Marshall about whether or not he ever got in touch with Dr. Singleton. My wife ordered and received his new book and is now going through it and I will peruse it when she is done. Anyway, I am just curious about the above question.
WON
____________________
Diagnois: Fatigue; Post Lyme Disease Syndrome
Symptoms: Fatigue, night sweats, head pain, burning in thigh, severe hand pain, brain fog.
Lab: 25-Dihyroxyvitamin D=45ng/ml, 1,25-Dihydroxyvitamin D 54ng/ml, CRP=0.2mg/dl
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Dr Trevor Marshall
Research Team
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Posted: Fri Feb 8th, 2008 16:05 |
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Dear WON,
I haven't had time to get in touch with Dr Singleton, nor have I any idea what could be achieved by my doing so. I have been coordinating our efforts with the NIH and FDA and the conferences in Stockholm and Portugal. Honestly, I am not sure what I could say to somebody who puports to write a book about my work without ever interviewing me first...
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Washed Out Nurse
Member
| Joined: | Tue Jan 22nd, 2008 |
| Location: | Oklahoma USA |
| Posts: | 15 |
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Posted: Fri Feb 8th, 2008 16:08 |
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Dr. Marshall,
I agree with your thoughts on my question. I was just curious being you had mentioned in an earlier posting to Julia that you would call him. I hope that I didn't offend you by my asking the question.
WON
____________________
Diagnois: Fatigue; Post Lyme Disease Syndrome
Symptoms: Fatigue, night sweats, head pain, burning in thigh, severe hand pain, brain fog.
Lab: 25-Dihyroxyvitamin D=45ng/ml, 1,25-Dihydroxyvitamin D 54ng/ml, CRP=0.2mg/dl
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Julia
Advocate (on leave)
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Posted: Fri Feb 8th, 2008 18:44 |
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WON,
I know nothing about US health insurance, but you could see if this link is any use: How To Obtain Insurance Benefit for Full Dose of Benicar. I gather some members have had to change their insurers.
Julia
____________________
Always consult a physician
Essential Info; FAQ; Julia's story
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Washed Out Nurse
Member
| Joined: | Tue Jan 22nd, 2008 |
| Location: | Oklahoma USA |
| Posts: | 15 |
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Posted: Fri Feb 8th, 2008 19:13 |
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Thanks Julia, I appreciate the heads up and will send the link to my doctor. Unfortunately I am not in the position to change insurers as I am covered under my wife's plan.
WON
____________________
Diagnois: Fatigue; Post Lyme Disease Syndrome
Symptoms: Fatigue, night sweats, head pain, burning in thigh, severe hand pain, brain fog.
Lab: 25-Dihyroxyvitamin D=45ng/ml, 1,25-Dihydroxyvitamin D 54ng/ml, CRP=0.2mg/dl
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Dr Trevor Marshall
Research Team
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Posted: Fri Feb 8th, 2008 19:47 |
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WON,
No offense taken, I just wish there were more hours in the day...
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joedegs
Member
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Posted: Fri Feb 8th, 2008 19:52 |
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There isnt anything listed in the book's index about the Marshall Protocol or Trevor Marshall.
The funny thing about this is he is trying to sell something, whereas Dr. Marshall is not.
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