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DaveW
Member
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Posted: Mon Dec 13th, 2004 05:51 |
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Hi (((Barb))),
Thx for the clarification. The 90% NoIRs I was referring to, are properly described as 10%.
I keep mixing up whether the percentage represents the % of ambient light filtered , or the % permitted thru (and this leads me to express it backwards).
I have the new design (I think they are called Spectra Sheilds?).
Meg,
I understand what you are saying Meg. I was spreading the word of the MP to everyone I knew, but I have since come to realize that in order to succeed on the MP - requires numerous "qualifications". My perception, is that these qualifications include:
1) A willingness to study the MP, and an ability to understand it at a level that will permit a level of belief and committment strong enough to carry them through the difficult adjustments and unpleasant herx.
2) Access to and ability to use an online computer (to access the MP site).
3) Finances to afford benicar and the other MP drugs.
4) A personal temperament that is willing to take risks, break new ground, tolerate uncertainty, and have the patience to defer gratification. It is not for "I want it to work right now" types, or the cautious " I'll wait and see" types.
5) A degree of illness that makes the cure worth the time, effort and cost.
6) Access to a doctor who will support and prescribe the MP.
7) A reliable access to benicar (if it is not available in their country).
These are just my thoughts on it. Do you perceive any other "qualifications" conducive to success that I may have missed?
Regards,
- Dave
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MP Aug14/04,Pre-MP D=19.6,1,25D=37 ratio 1.89 P2>12/27/04.Back to P1 fall/05.Back to P2 05/06. 21 yrs neuro-lyme not dx til 11/05. OlmesTR 40 mg/7hrs. Major: Weakness,IBS-C,pain,bad sleep,anxiety,depression,cognitive focus,memory,CMV,epilepsy & osteo
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Meg Mangin R.N.
Former Team Member
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Posted: Mon Dec 13th, 2004 06:08 |
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Dave,
That's a great list. I would add:
-The willingness to adapt your lifestyle to avoid sun/lights, including looking unconventional covered from head to toe and wearing sunglasses indoors and out.
-The willingnes to give up some favorite foods.
-The capacity to avoid or severely limit sun/lights if still employed or responsible for raising children.
Best,
Meg
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Nothing contained in this site is or should be considered, or used as a substitute for, medical advice, diagnosis or treatment by your physician.
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DaveW
Member
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Posted: Mon Dec 13th, 2004 06:46 |
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Good additions Meg.
Do you think this list could potentially be used by prospective new MP'ers (or for prescribing Doctors' use?).
It may save frustration and cost for those who do not have a strong chance of success.
It is my hope that over time Docs will become familiar and adept enough to administer the MP successfully without the need for patients to access the site. If it becomes very popular there is no way the site could handle tens or hundreds of thousands of patients, and this would also give those who have no computers a chance at regaining their health.
I guess for now, it is "one step at a time".....but if that time ever comes, know that you administrators and board staff who have given so selflessly to get the MP off the ground, will never be forgotten.
(((((((((((MP Staff)))))))))))))
- DaveW
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MP Aug14/04,Pre-MP D=19.6,1,25D=37 ratio 1.89 P2>12/27/04.Back to P1 fall/05.Back to P2 05/06. 21 yrs neuro-lyme not dx til 11/05. OlmesTR 40 mg/7hrs. Major: Weakness,IBS-C,pain,bad sleep,anxiety,depression,cognitive focus,memory,CMV,epilepsy & osteo
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Big John
Member in Phase 2/3
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Posted: Tue Dec 14th, 2004 01:27 |
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Hi Dave!
I would like to add to your list, in my opinion it is of paramount importance to be in touch with your body. Sounds kinda esoteric, however, it is most important to get to know your body and how it reacts to the protocol. To become aware of minute muiances that take place. How the body reacts in a herx and with different medications.
One also must understand ones mental health. Some of us become depressed or frustrated from time to time with the continiuos pain, continious herxs, conflicting information, etc. They need support and a little reassurance and maybe a reality check from a different point of view...  This comes whole heartedly from the volunteers on this site who play a major part in each of our successes. My point "Willing to accept support and know when to ask."
John
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Reiters Syndrome, Benicar 9/23/04. Mdx: Sotolol, atenolol, spironolactone, amlodipine,alprazolam, lexapro, Benicar q8. Ph2 12/05. Ph3 5/06
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DaveW
Member
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Posted: Tue Dec 14th, 2004 04:59 |
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Big John,
I think that your points are both valid and insightful. Thank-you for your input.
- DaveW
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MP Aug14/04,Pre-MP D=19.6,1,25D=37 ratio 1.89 P2>12/27/04.Back to P1 fall/05.Back to P2 05/06. 21 yrs neuro-lyme not dx til 11/05. OlmesTR 40 mg/7hrs. Major: Weakness,IBS-C,pain,bad sleep,anxiety,depression,cognitive focus,memory,CMV,epilepsy & osteo
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19470 |
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Posted: Wed Dec 15th, 2004 01:53 |
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There you are >> new FAQ >>How do I know if I have the 'right stuff' to be successful with the Marshall Protocol?
Thank You, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| MP Aug04| ABC of MP
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Kate D.
inactive member
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Posted: Wed Dec 15th, 2004 20:56 |
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Hi Dave,
I wish your doctor were in NS. I would camp out in his waiting room until he agreed to take me on! I am not having much luck in Nova Scotia with doctors. I have a big crisis right now because my GP was willing to prescribe the mino but is now balking at zithro because his guidelines are not to prescribe it long term due to antibiotic resistance.
Not only did I choose the wrong country to live in (I'm dual citizen between Canada and the US) but it looks like I chose the wrong province too. 
- Kate D.
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Lyme diag. 2004, IBS diag. 1997, ill since 1996, some symptoms 30+ years. MP since July 2004, Phase 2 since Jan 2005. Benicar 40 mg q6h. Ultram for pain, probiotics. Starting D values: 1,25 D = 46, 25 D = 11.
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Paula Carnes
Banned
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Posted: Thu Dec 16th, 2004 23:55 |
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Kate,
You just get that Z pack. It will last you for months and months. You don't have a problem.
Paula Carnes
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DaveW
Member
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Posted: Sun Dec 19th, 2004 16:43 |
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Weekly Update
I am now taking mino 100 once every two or three days. I have experienced a very high level of anxiety,depression and concentration problems this week. I suspect that the problem has been exacerbated by my eating more sweets (Christmas goodies) than usual.
I had to resort to cutting out all sweets and taking two daily doses of Nortriptyline (10mg) and SAMe - to get me through and permit me to cope.
My eyes seem to be extra sensitive to light right now. My old headaches are coming back (or threatening) once again - as they did before I started the protocol.
Re: Update on SAP application
I still have no update on the SAP application for benicar from my Doctor. I went to see him this past Monday. He said he would send in a request to Health Canada for an update on progress. I called him later in the week, and when he called me back - I missed the call! <sigh> ..... Now I have no way of contacting him til Monday (at the earliest).
Regards,
- DaveW
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MP Aug14/04,Pre-MP D=19.6,1,25D=37 ratio 1.89 P2>12/27/04.Back to P1 fall/05.Back to P2 05/06. 21 yrs neuro-lyme not dx til 11/05. OlmesTR 40 mg/7hrs. Major: Weakness,IBS-C,pain,bad sleep,anxiety,depression,cognitive focus,memory,CMV,epilepsy & osteo
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Kate D.
inactive member
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Posted: Tue Dec 21st, 2004 16:32 |
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Hi Dave,
I dropped in to see how you're doing on 100 mg. I'm solidly on 100 mg., but seem to be settled into a state of "perma-herx" on it. I know it's not really permanent because I had some good days only a couple weeks ago, but it sure seems permanent now. Interesting how my perspective changes depending on how I'm feeling. I can see you have to deal with that a lot. What do you do, just try to step back and observe depression etc. objectively? It sounds like you're taking the necessary steps.
I also dropped in to see how close you're getting to Phase 2. Despite my new Phase 2 label, I am not too crazy about rushing into adding more herx on top of the perma-herx. I'm hoping my "stable" condition gets a bit more pleasant first. But I don't think there is any guarantee of that happening!
I see my doc today about the Zithromax. Hopefully it will turn out to be a non-issue as Paula suggests. If not, you will hear me screaming about it from across the country!
Your fellow Canadian,
- Kate D.
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Lyme diag. 2004, IBS diag. 1997, ill since 1996, some symptoms 30+ years. MP since July 2004, Phase 2 since Jan 2005. Benicar 40 mg q6h. Ultram for pain, probiotics. Starting D values: 1,25 D = 46, 25 D = 11.
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19470 |
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Posted: Tue Dec 21st, 2004 19:22 |
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Dear Dave,
You may have been looking at our FAQ > How do I know if I'm ready for phase two?
You have probably been thinking preparing.... and I know you want your Benicar situation to be better too
You can make contact about this when you feel ready
... all best as always, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| MP Aug04| ABC of MP
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DaveW
Member
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Posted: Sat Jan 15th, 2005 06:11 |
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Hello (((Good Folks))),
I have moved on to phase II, but have stopped back to provide an update on my progress.
I have been experiencing much stronger herx on phase II.
My memory and concentration have remained very poor (and possibly even worse).
It is quite clear to me why they advise that you have little or no herx oh phase I before commencing phase II.
I am hoping that all this ugly herx I am tolerating will pay off later in my feeling better - and I still have faith that this will occur.
Regarding my Doctor's SAP application for benicar - whenever we request an update on progress from Health Canada - they say they are communicating with Sankyo. This is the same response we have been getting for two or three months. I am not sure what the hold-up is, but after this much time, it is hard to be optimistic.
Regards,
- DaveW
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MP Aug14/04,Pre-MP D=19.6,1,25D=37 ratio 1.89 P2>12/27/04.Back to P1 fall/05.Back to P2 05/06. 21 yrs neuro-lyme not dx til 11/05. OlmesTR 40 mg/7hrs. Major: Weakness,IBS-C,pain,bad sleep,anxiety,depression,cognitive focus,memory,CMV,epilepsy & osteo
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Reenie
inactive member
| Joined: | Wed Jul 21st, 2004 |
| Location: | Phoenix, Arizona USA |
| Posts: | 3373 |
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Posted: Mon Jan 17th, 2005 07:42 |
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Dave,
Are you taking your Quercetin regularly? I noticed you say in your sig lines, 400mg tid/qid. I'm taking a 500mg cap qid now, and it's like a magic pill for me.
I was beginning to feel like I'm not herxing, but what it's really doing is helping me w/the brain fog, moodiness, weakness and lethargy.
If you're not regularly dosing Q, tid, I would strongly encourage you to try it. It took almost a week for me to notice any real major improvement, since it helped gradually.
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DaveW
Member
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Posted: Tue Jan 18th, 2005 06:46 |
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Hi Reenie,
Thank-you for your response.
Forgive my ignorance, but I don't even know what Qid or Tid mean. Somebody helped me with my sig line.
I take 400 mg of Quercetin - 3 times per day. I take it along with my benicar.
Do you think a larger quantity might help?
- DaveW
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MP Aug14/04,Pre-MP D=19.6,1,25D=37 ratio 1.89 P2>12/27/04.Back to P1 fall/05.Back to P2 05/06. 21 yrs neuro-lyme not dx til 11/05. OlmesTR 40 mg/7hrs. Major: Weakness,IBS-C,pain,bad sleep,anxiety,depression,cognitive focus,memory,CMV,epilepsy & osteo
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Reenie
inactive member
| Joined: | Wed Jul 21st, 2004 |
| Location: | Phoenix, Arizona USA |
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Posted: Tue Jan 18th, 2005 06:56 |
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Hi Dave,
No, three times a day is the preferred dosing. 
I just cut back to tid myself, today. I might even try to lower the dose to 2/day, sometime in the future, since Quercetin is medicinal and we don't want to be taking any more than necessary.
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DaveW
Member
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Posted: Sat Jan 29th, 2005 17:15 |
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Hello (((Good Folks))),
Update from Phase II
I am approx 1 month into phase II, and am having some difficulty handling the herx . It is not as easily controlled as it is in phase I (underscoring the precaution not to jump into phase II prematurely).
Currently - I am experiencing many of the general (pre-MP) symptoms of my disease, but at a higher level of severity - including poor sleep, lethargy, achiness and soreness, generally feeling yuk and significant cognitive and depression problems.
Due to the severity of Phase II herx I have experienced, Dr Marshall gave me the option of using a less potent combo of antibiotics for awhile, to get down my total bacterial load (and thus reduce my herx level, if it becomes intolerable). I have only myself to blame for the severity of my symptoms I am currently experiencing - since I have been too stubborn to accept this offer.
I still have faith - that since my current herx were my pre-MP symptoms, it only makes sense that I must experience them as herx, if I hope to get rid of them. ie. If CWD has caused inflammation (Pre-MP) that caused me to experience these symptoms - then it makes sense that I will experience the same symptoms (in possibly even greater severity) when these CWD infestations are killed off (due to the toxins released).
For these reasons, I guess we should feel thankful for the herx we experience - but as the herx becomes difficult, a sense of appreciation becomes increasingly more difficult to muster.
My experience of the MP is in line with the theory, and my faith in the science has so far managed to keep me going. If you have a severe infestation, the path back to health can sometimes be dark and rough. Still, I was somewhat past "the end of my rope" when I started the MP - so I have little to lose, and so much to potentially gain.
All the best,
- DaveW
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MP Aug14/04,Pre-MP D=19.6,1,25D=37 ratio 1.89 P2>12/27/04.Back to P1 fall/05.Back to P2 05/06. 21 yrs neuro-lyme not dx til 11/05. OlmesTR 40 mg/7hrs. Major: Weakness,IBS-C,pain,bad sleep,anxiety,depression,cognitive focus,memory,CMV,epilepsy & osteo
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
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Posted: Sat Jan 29th, 2005 17:38 |
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Dear Dave
Are you wanting to accept the offer, as it still stands.. there is nothing to gain by being too tough on yourself... let us know..
all best Dave, Barb ....
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| MP Aug04| ABC of MP
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DaveW
Member
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Posted: Sat Jan 29th, 2005 18:09 |
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Thank-you Barb,
I will keep it in mind if the going gets too rough.
Regards,
- DaveW
Last edited on Sat Jan 29th, 2005 18:15 by DaveW
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MP Aug14/04,Pre-MP D=19.6,1,25D=37 ratio 1.89 P2>12/27/04.Back to P1 fall/05.Back to P2 05/06. 21 yrs neuro-lyme not dx til 11/05. OlmesTR 40 mg/7hrs. Major: Weakness,IBS-C,pain,bad sleep,anxiety,depression,cognitive focus,memory,CMV,epilepsy & osteo
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DaveW
Member
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Posted: Sat Mar 19th, 2005 19:49 |
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Update
Hello (((Good Folks))),
I am in phase two now and this is my first report in quite some time on the main board.
I struggled with the first (added) antibiotic in Phase II, to the point where I followed the advice of Dr M and board staff - and tried a different (milder) antibiotic that is milder, but not normally introduced until later stages.
I am still struggling with the herx from the initial starting dosage of this milder antibiotic. The herx in stage II can be very marked and pronounced. My (personal) major herx symptoms of brain fog, depression and anxiety are still my major struggles.
It has also become clear to me, that it will be some time for me (months to years) - before I start feeling significantly better on a consistent basis. I think this is because we will not allow ourselves to feel better. As soon as we do, we ramp up the antibiotics (until we suffer from significant herx again).
I also suspect that my difficulty adjusting and ramping is a reflection of a very severe infestation (for me personally), that will take some time for me to eradicate.
On the Up side - this also means that there is potential for me to have incredible improvements when this severe infestation is finally eradicated.
Even though I insist on always experiencing herx (and feeling quite poorly as a result), I have noticed the following undeniable improvements;
My circadian rythyms are changing - I find myself more wide awake and starting to get hungry in the mornings - and actually getting tired as bedtime approaches.
My bowels keep approaching more normal as time progresses.
My sensitivity to foods is decreasing (which is leading me to eat more - and making me fat!). Although I don't need the extra weight, it is very nice to be able to eat a greater range and quantity of food, without it making me feel rotten.
I have experienced a couple days (and sometimes even just a few minutes) when I have felt much better (physically and mentally) than I have for years - which helps me retain my conviction and faith in what is to come.
I certainly have not lost faith in the MP. In fact - the more misery and struggle you feel as a result of tiny quantities of antibiotics - the more evident it becomes that you suffer from CWD bacterial infestations, and the validity of the MP is reinforced. I have now been on the MP for 7 months, and its science and predictions of a patient's experience keeps holding true. My faith is increasing - but I must admit that there are times when I have felt so poorly - that I could not help but question.
I have considerable patience (and really - what choice do I have?), so as long as I am reacting and keep sensing that I am progressing - the long time frame for complete eradication does not deter me.
It took me 18 years (or likely much longer) to build up this infestation, and it has effectively destroyed my life. Relative to the time period that I have been sick - two to three years to achieve eradication and to regain my health and life is still a small price to pay. Besides, I have seen no alternatives that even begin to offer the same hope.
Regards and best wishes,
- DaveW
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MP Aug14/04,Pre-MP D=19.6,1,25D=37 ratio 1.89 P2>12/27/04.Back to P1 fall/05.Back to P2 05/06. 21 yrs neuro-lyme not dx til 11/05. OlmesTR 40 mg/7hrs. Major: Weakness,IBS-C,pain,bad sleep,anxiety,depression,cognitive focus,memory,CMV,epilepsy & osteo
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19470 |
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Posted: Sat Mar 19th, 2005 21:05 |
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Thank You Dave,
so much of what you say rings true for me also.. I am seeing that this is going to take me sometime, and I am now being forced to see just how truly sick my body is, has been.. what a great job we have done to do all we have done in the circumstances.. I know it has been tough going...
and we are getting a chance at Life that we heretofore have never had!!
Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| MP Aug04| ABC of MP
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