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lady goDarker
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| Joined: | Thu Dec 6th, 2007 |
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| Posts: | 20 |
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Posted: Fri Jan 4th, 2008 06:47 |
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Hi,
First off, thanks for being here and in performing such service. I have been roaming around this and the MP site for the last 5-6 weeks, have had a bone density(excellent) and a nuclear stress test(within the range of normal for a 59 year old woman), talked my pcp into becoming educated with the MP, had the D tests(suggested therapeutic probe), have been diagnosed withLyme years ago, have had 3 attempts with IV Rocephen(the last time 16 months), understand somewhat the basics of Th-1 inflamation disease, sick and tired of being in unrelenting pain and other symptoms, want to do the MP but am afraid I will die from it.
I have seen the DVD's with the stories from many of the people and have to say I am grateful not to have been diagnosed with sarc and am amazed by their passion for and joy of recovery. When I think recovery is perhaps possible for me and that I may be able to join in active life and service again I begin to feel unspeakable joy which is then dashed by my fears of immunopathology. I have done searches on this and the other board. I start working on the board and find that it is two hours later. You do have my attention. I know I have to address my own fear but perhaps someone could help me with suggestions.
Thanks so much, Margaret Moore
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Julia
Advocate (on leave)
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Posted: Fri Jan 4th, 2008 09:45 |
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Hi Margaret,
Welcome to our MP questions board. Congratulations on all the research and preparatory work you've put in to tackling your disease! You sound like the kind of person who's going to win through to health.
I notice you say anxiety is one of your symptoms. As you already realise, you simply mustn't let it stop you going forward to a new level of health. The moderators have said it's acceptable to take a medication for this along with the MP.
In addition, as a non-medic  , I would prescribe a daily 10 minute dose of reading from Success Stories and/or Bacteriality, a blog posted by one of our members.
The risks associated with leaving your disease untreated, or using palliative steroids that let the bugs flourish, are far greater than the risks of the MP. And the immunopathology that scares you is actually manageable by adjusting the dose and frequency of the meds so that it's tolerable.
Many of us have continued to work and lead a (fairly  ) normal life while doing the MP, because it's so adaptable. You'll find out what you can tolerate, and learn to listen to your body as you help it fight the bacteria.
Please know that your fear is common. We have a strong and experienced back-up team here and on the main site ready to support you and your doctor on your MP journey. 
Julia 
____________________
Always consult a physician
Essential Info; FAQ; Julia's story
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GeorgeinRollaMO
Advocate
| Joined: | Sat Oct 20th, 2007 |
| Location: | Rolla, Missouri USA |
| Posts: | 331 |
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Posted: Fri Jan 4th, 2008 23:08 |
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Hi, Margaret,
Julia gave you some good words!!!
As you can see from my signature line, I came to the MP with the idea that I had borreliosis...essentially Lyme as everyone commonly calls it in the U.S. I did not have the five titers of a certain ten as required for reporting to the CDC as "Lyme disease". However, I did have some titers for Bb on the Wb test, and I did test Positive on the Bowen RIBb test, and at the highest dilution ratio.
The IP, herxing, is controlable. It is nothing to be fearful of, but certainly do give it respect. Do the MP protocol as it is written, and do report to get the assistance of the moderators. No supplementing or other meds (for the most part, except as absolutely needed). Control light, etc.
I have had only one episode of the herxing being intolerable, and I was able to turn that around rather quickly with the "control herxing" procedure. That one episode happened about the time that my 25D test result went below 20 ng/ml, the point at which the innate immune system is starting to get turned on. I had been taking the abx at a higher amount because of lack of help from the innate immune system. I cut back the abx, and the herxing became tolerable once again.
I did supplement with non-"vitamin" D very heavily before learning of the MP, and I suspect that may be the reason that it has taken my 25D level to come down so slow, and has slowed my progressed on the MP. However, I have had improvements.
My wife did IV Rocephin, too, for two and a half months, and relapsed, also. As you must know, Rocephin only turns the CW to CWD.  It does not "cure". You might read about the November 2004 EICS Conference and what Dr. Marshall thinks about IV Rocephin.
Undoubtedly, you will be uncomfortable at times doing the MP protocol, but that is not the same as intolerable... if you are careful.
Wishing you, and all, wellness!!!
Dark Vader...aka, George
P.S. Forget the name of sarcoidosis, borreliosis (Lyme), arthritis, etc...all of the names that the med docs like to think and talk about. It is all "Th1 inflammation"....one cause!
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Borreliosis (but really Th1 inflammation). Start D values, July '04, 125D/57, 25D/61...over supplementation with D (fish oil).
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lady goDarker
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| Joined: | Thu Dec 6th, 2007 |
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| Posts: | 20 |
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Posted: Sat Jan 5th, 2008 04:03 |
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Hi, Is the use of acupuncture contraindicated when doing the MP? I have been receiving treatments once a week for years and it has been a tremendous support. As it works with meridians and improves(?) immune function, I cannot ascertain as to whether it would be not in my best interest while doing the MP. Thanks, mm
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Dr Trevor Marshall
Research Team
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Posted: Sat Jan 5th, 2008 04:06 |
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Acupuncture is fine, and, if it gives you pain relief, you can continue it with confidence it will not interfere with your recovery.
The Electronic TENS/Massage units (so popular in the Far East) are also not a problem, and if they give you pain relief, use them as much as you need
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markt9452
Member
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Posted: Sat Jan 5th, 2008 16:49 |
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This is interesting. I couldn't help noticing that the location of many of my symptoms correspond precisely to the acupuncture meridians and exhibit unusual symmetry. In particular the electrical sensations I am experiencing that start just behind my ear and shoot down to my feet follow these meridians.
I did see a homeopath last year that was absolutely clueless about Th1 (of course I was to) but he did stick an accupuncture needle in exactly the right spot behind my ears without being told about it. I reached the conclusion that the acupuncture seemed to be closer to the truth than the homeopathic version. Of course none of these things provided any relief for the Th1 inflammation because of the vitamin D.
Later on when I mentioned the MP to the Homeopath his eyes seem to glaze over just like my MD. Mainstream medical establishment ideas are held on to with a religeous fervor - but there are other schools of thought that are equally as intolerant to any ideas outside their realm of experience.
I would do acupuncture again but I won't be seeing the homeopath unless he comes to his senses and needs my help.
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Th1 Lyme vertigo fatigue brain fog skin lesions tinnitis 125D20 D2510 Ph1Feb08 Ph2Apr08 daily lite exp covered up NoIRs| MyStory|
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lady goDarker
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Posted: Tue Jan 8th, 2008 14:14 |
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Hi folks, I am not sure how to add on questions I have. Julia did tell me and I am unable to find my mail from her that explains the procedure so that all my questions end up together. I will do what seems the most natural thing. I am sure you will help me fix it for which I am grateful.
1.Is it possible for me to have a headache(constant) since I stopped Vit D? Seems to line up with each other.
2. A girlfriend(one who has found herself through exercise) has given me a gift of membership in this gym. Would it be in my best interest to wait until I have started the MP and gone through some of the imunopathology before I go and exercise. She can't think of a good reason not to exercise. my exhaustion and depression can think of several. What about you guys?
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Dr Trevor Marshall
Research Team
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Posted: Tue Jan 8th, 2008 14:46 |
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During excessive exertion, the body manufactures Cortisol, endorphins, and a stack of other metabolites which might make you temporarily feel better, but which do little to improve your long term health.
Exogenous Vitamin D is immunosuppressive. It hides your symptoms (just as aerobic exercise does). It is usual for symptoms to increase as the immunosuppression wanes with decaying levels of stored 25-D. Starting the MP, as described in our Phase 1 document, will control and manage these symptoms.
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lady goDarker
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Posted: Tue Jan 8th, 2008 21:46 |
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Hi, Am I correct in thinking that diflorasone diacetate cream should not be used while on MP? I have (to me) disfiguring psoriasis on the face head and ears. I believe I understand the reasoning for not using, any other suggestions? Thanks, mm
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Julia
Advocate (on leave)
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Posted: Wed Jan 9th, 2008 11:16 |
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Margaret,
You are right to be wary of Diflorasone cream. It's a fairly potent corticosteroid used to suppress inflammation.
I have a lifelong eczema problem, and I've found that the various phases of the MP affect its flares and remissions very noticeably. This gives me hope that one day I may be free of it  Others with psoriasis and other skin conditions have found the same; some who have been on the MP several years are now practically free of their skin troubles.
I use hydrocortisone 1% cream when I have to, which is the mildest steroid cream I can get over the counter here. Even that must be used very sparingly, especially on the face, and never allowed to get in the eyes. Some people find Benadryl useful, but you can't use it on broken skin. When I'm having a bad flare I've sometimes taken an antihistamine pill to get a better night's sleep.
Dr Marshall said in the topic I've developed a rash:
Topical steroids
Topical steroid creams are available OTC and may be needed to relieve intolerable itching. Use them sparingly.
If intolerable itching is not helped by OTC steroid cream, talk to your doctor about a prescription strength topical corticosteroid preparation and use it sparingly.
All topical corticosteroids are absorbed through the skin and enter the circulation. See for example this report of a person who lost their femoral head joint (hip) due to steroidal cream being applied to the face:
http://tinyurl.com/5ebwu
All steroids are bad in high dose - they differ only in their efficacy vs dose characteristics. So if you have to use them, then please do it very sparingly. Additionally, any skin that you apply the creams to will not be doing any healing, as the steroid will heavily suppress the immune system in the region it is applied.
Hope this helps.
Julia
____________________
Always consult a physician
Essential Info; FAQ; Julia's story
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lady goDarker
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Posted: Wed Jan 9th, 2008 19:59 |
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Hi, I am wondering about the use of weekly chiropratic care? Thanks, mm
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Julia
Advocate (on leave)
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Posted: Wed Jan 9th, 2008 21:09 |
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Margaret,
This link (filelink) Non medication strategies to reduce pain says in part,
Some patients achieve pain relief with complementary and alternative therapies, such as chiropractic or acupuncture. Only seek advice or treatment by a qualified professional, and be sure to discuss any of these therapies with your physician.
So chiropractic is fine to use with the MP .
Julia
____________________
Always consult a physician
Essential Info; FAQ; Julia's story
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lady goDarker
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Posted: Wed Jan 9th, 2008 22:48 |
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Julia, I did a search on chiropratic care and did not find the link you gave me, Sorry. I am somewhat confused in figuring out ln the controlling of IP one is to use an extra Benicar and/or one is to use minocycline as an NSAID alleviating symptoms. Perhaps when one is on the MP the answer to this question would be obvious. Reading the material I find that both would work to control IP so is it wait until I get there or figure it out before I get there? I am just waiting for my Noir glasses to arrive. Everything else is all set. I am experiencing anxiety about starting but am, for the first time in a long time, hopeful. My doc's hooked up but as it is stated in many of the forums, I know it is my responsibility to know how the protocol works. Thanks so much, Margaret
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Julia
Advocate (on leave)
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Posted: Wed Jan 9th, 2008 23:23 |
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Margaret,
The MP study site is very complex, and it's not easy to find your way around! The link I gave you occurs in the thread Pain Control, which is in Side Topics related to the Marshall Protocol, which is in ABOUT THE MARSHALL PROTOCOL.
The search facility on the website will merely bring you up a list of every post that mentions your topic, in order of date posted. I find it better to type the word into Google and tell it to 'search current site', because it brings you the most relevant results first. Also, Google will catch any slight mistake in spelling and suggest the correct word - like if you've left a c out of chiropractic  !
Yes, it's better to sort out pain control by meds when you get there. Basically, immunopathology (herx) is controlled first by increasing benicar and reducing light, and second by adjustment of antibiotics, but Phase 1 is a training ground in which you learn to listen to your body's individual responses and gain experience in this adjustment of meds before you go on to the 'big guns' of Phases 2 and 3.
Above all, you are never on your own. The moderators are available to help you figure it out, and they have a wealth of experience in guiding members on the MP. That's why it's vital to keep in touch - even at times when you're sailing along with no apparent problems (yes, there are good times too ). Moderators can often spot trouble before it happens, and steer you in the right direction. Always post once a week, and more often if you have any queries or problems.
Julia
____________________
Always consult a physician
Essential Info; FAQ; Julia's story
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lady goDarker
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Posted: Thu Jan 10th, 2008 12:31 |
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Hi, I have an ear and sinus infection that has been treated but has not really gotten better. Should I retreat before I begin the MP? Thanks, mm
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Julia
Advocate (on leave)
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Posted: Thu Jan 10th, 2008 16:48 |
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Margaret,
No, there is no need to postpone the MP while you treat another infection, especially one that has already failed to respond to treatment.
When the body is weakened by these Th1 diseases co-infections are very common, as the immune system is 'busy' dealing with the pathogens which have parasitized the phagocytes and can't deal as effectively with the opportunistic infections. Co-infections that have been resistant to treatment, will likely be eliminated by the immune system as its proper function is restored with the Marshall Protocol.
This is taken from Will the Marshall Protocol treat co-infections?
Julia
____________________
Always consult a physician
Essential Info; FAQ; Julia's story
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Claudia
Member
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Posted: Fri Jan 11th, 2008 13:39 |
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Hi MM,
Regarding your question about exercise and going to the gym -
I find it important for me to exercise as much as possible, but that's not always very much at all, compared to before going on the MP. However, when I think back to how active I was before getting sick I realise that I was going downhill fast and would soon have been disabled anyway. Now I just do what I can and look forward to the day when I am completely well - I will be a few years older, but my body will be "younger" thanks to the MP!
For now I exercise when I feel well and rest when my body says to stop. I try to go out at night - which is when I feel best anyway - and walk, ride a bike and sometimes swim! Before the MP I used to be all day in my garden but while on the MP I have taken up container-gardening instead and a lot of that can be done at night. In the daylight I have to cover up so it is restrictive, but I still go out for walks. Walking on the flat is something I can do for hours but going uphill is extremely tiring. You will find your own limits.
As for a gym membership - it sounds ideal as long as the lighting isn't oppressive. Some modern gyms have plate-glass windows (show offs!) so that would be bad. Can you go at night? Too much fluro-lighting would make it necessary to wear your NoIRs, but that's easy. I'd be taking the opportunity to stay in shape with gentle exercise classes and the use of indoor machines, especially if the gym offers a qualified exercise physiologist to advise you. Be sure to tell them about the MP. Being on the MP can be a very sedentary lifestyle, so that can help you keep in shape. Tai Chi or Yoga might be good choices too.
My blood pressure is very low - most people on the MP have low BP and often feel dizzy. So take special care not to take on too much at once and to get up slowly after being in a prone position. I live in the tropics. It's real hot here and that makes it even harder to exercise. Swimming is the best thing when it's real hot, but only under cover or at night. Cold showers, a cold plunge or even a bucket of ice-water to soak my feet in is extremely therapeutic for me when I get too hot.
Take care of yourself and keep us posted!
Claudia
____________________
MP from March 2006; Now in Phase III; Dx Thyroiditis; arthritis; eye irritation & glaucoma; history of CFS (1988-92);Kidney & bladder probs. Making steady progress toward recovery
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Reenie
Member
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Posted: Sat Jan 12th, 2008 18:48 |
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Hi MM,
I couldn't help noticing many of your questions sound like similar symptoms and treatments I've used.
1. I used to regularly exercise but due to my illness I had to give it up as my pain and fatigue were grossly exacerbated. Since on the MP, I've become a little more active now, although it's been sporadic depending on where I've been along the recovery path. Like Claudia, I'm as active as I can be, which is very little alot of the time.
I tried to join a "gentle yoga" class one day a week about 18 mos ago and couldn't attend much so I dropped out but just last week, (now 3+ yrs on the MP) I took another yoga class. I think I may be able to tolerate it a couple of times a week now but will have to see how it goes.
2. My psoriasis has been a really sore and sticking point often causing severe and debilitating reactions to toxic drugs with horrific rebound effects. 
When I first began the MP, before actually begining the full MP, my skin improved almost completely, but when I have too much IPR (a sign that I'm actually fighting the infection causing my illness) my skin can flare up miserably. I take this as a good indicator to gauge how quickly I can proceed on the MP.
I have had many times so far while on the MP that my skin, scalp and nails have been much improved and I believe as I progress my psoriasis will completely disappear but it takes time and patience.
3. I see a chiropractor regularly. It also helps me to gauge how I'm doing and to help me with intolerable as well as tolerable IPR reactions to the MP.
I have had to switch chiropractors this past year due to my recovery. I need a much more gentle adjustment now and the new chiro only adjusts what is absolutely necessary.
It's been interesting in that when I am having lots of IPR reaction to the MP meds my body can be "read" as being really out of alignment and when things quiet down, my body shows it with marked improvement.
My chiro doesn't really "get" the MP but I explain to him that what he finds when he treats me is exactly what I would have anticipated by my MP reactions. I only go 1/week and may be able to stretch it out soon to 2/month soon when before the MP I couldn't ever stand to go less than 2/week.
The new chiro often suggests walking for excersise when I'm at my worst but I simply know better and just smile and nod. 
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lady goDarker
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Posted: Sun Jan 13th, 2008 11:54 |
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Hi all you Dear Ones,
Thank you so much for the replies. I feel as if I am being invited eargerly into one of the most important circles of my life, a circle that cares about my getting well by others who have been there. Thank you.
I have all my ducks in a row to start the protocol. Went last Wednesday and my doc is finally on board, for which I am totaly grateful. I have all the meds. Of course my insurance did not pay. So, I will go through working for that. I ordered my glasses over two weeks ago, so I called and learned that they took a week off over the holidays and will be sending the glasses on Monday. My intention is to commence next weekend.
I am so blessed by a supportive family and circle of friends who are behind me in this endeavor. I feel so blessed by being able to access this protocol and use it with the honest and earnest and amazing group support I imagine I'll ever experience. Thank you so much for that and for all.
My husband and I are going on retreat for a few of days so I will not be on board. Again, thank you for giving me hope when and where there has been none for several years. I am so appreciative. Margaret Moore
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lady goDarker
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Posted: Mon Jan 21st, 2008 01:50 |
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Hi, I am back from retreat and ready to go. I am anxious but willing to be so. Originally planned to start the protocol in the AM. My glasses are here, my meds are in supply, amd I am mentally prepared. It is not great timing, now, because my husband has put his back is out, needs an MRI as his back situation is unlike anything before. He is afraid he needs surgery. Makes me concerned that our individual 'sick' needs will conflict. I have made my plans and was ready but now wonder if I should wait until we get his situation sorted out before I start walking into the unknown of the MP. Any suggestions? Margaret
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