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DaveW
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Posted: Sun Dec 12th, 2004 16:55 |
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Weekly Update
I am continuing with 100 mino on Tuesdays and on Fridays - waiting for the herx to decline so I can commence Stage II. Unfortunately, I sense that this may take a while.
Interestingly, my herx is no less on the third day than on the second. In fact, at any dosage of mino - for me, the herx have usually lasted about five days before a significant decline occurs.
After a dose, my herx does not get strong for 12 to 24 hours. Then, it seems to be more severe in the evenings, and especially when I eat less. Notwithstanding these daily fluctuations, the herx level then seems decline very slowly for about five days, and then tapers off more quickly.
I am thankful for the herx (or rather, for what it indicates), but I have never been sure if I should take the mino every 48 hrs - or wait five days between doses until the herx declines. The only potential disadvantage to the latter approach, is that it may result in a significant delay in my ramping progress.
My approach to date has been to compromise. By taking mino on Tuesdays and Fridays, I am taking it with alternating three and four days intervals.
Re: My Doc's SAP application
I saw my Doc on Friday to prompt him to send in another request for an update on the progress of his application to access benicar (from Health Canada), on my behalf. The constant delays and lack of communication has deflated my optimism.....but never say never.
Re: My Doc seems to be getting "on board"
I was very pleased to hear that My Doc is starting another three or four of his patients on the MP (but with diovan rather than benicar - mostly due to the difficulties of getting benicar in Canada). He is aware that diovan is greatly inferior to benicar, but I think he perceives the diovan is better than nothing. I understand his reasoning. Some of his patients may not even own a computer, and may not be able to afford benicar even if they could access it.
If/when he gets time, he mentioned that he would like to spend some more time researching the MP information in the Doctor's forum at the MP site. The down side is, if he does it when gets time - it may never happen.
He is receptive, cooperative, intelligent and caring - and I am so lucky to have him!
Unfortunately, he told me he was not taking any new patients (as he is already run off his feet, and it is very true).
I am hoping that the (anticipated) successes he will witness administering the MP may increase the receptiveness of other local Doctors in the area.
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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Foundation Staff
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Posted: Sun Dec 12th, 2004 19:53 |
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Dave,
My suggestion would be to increase mino 100mg to every other day (or M-W-Fr) so that you can add Z over the Holidays as was your original goal. Have you yet purchased the NoIR sunglasses that block more infrared rays for outdoor use or are you still using only the 40%?
I commend your doctor for wanting to help other patients with the Marshall Protocol. But I fear these patients will not be successful because they are not using Benicar and, without access to MP.com, may not understand the importance of avoiding all forms of Vitamin D. Please remind your doctor that if these patients fail, they were not really on the MP.
Best,
Meg
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DaveW
member
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Posted: Sun Dec 12th, 2004 20:21 |
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Hi (((Meg))),
Thanks for the response. I still only have the 40% NoIRs, but I am outside for perhaps 20 mins per day, and most days it is dark during my 10 min trip to work, and dark again for my trip home. (This is winter in Canada...try not to be too envious!).
I have 90% NoIRs, but they are size medium and I get headaches from them. I am not sure if it is because they let too much light in the sides, or because my eyes must strain to see when I have them on.
I am still planning to get a pair of large 90% NoIRs for next summer. They will be the fifth pair I have purchased.
I will remind my doc that his patients are not really on the MP with diovan. I also have fears that his patients may not succeed without his getting support from the MP sites, and I doubt he has time to do the research necessary or to solicit the support he needs to know how to respond to the inevitable struggles his patients will experience.
I wish that somehow he could open a dialogue with Dr Marshall (and with you) - to get the door open to his consulting for advice.
My best regards Meg,
- 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
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Posted: Sun Dec 12th, 2004 21:19 |
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Dear Dave
I don't know if it is only me who is confused about the (90)% you have listed re your NoIRs... so I have posted the details from the NoIR website. The glasses for MP are the 10% for inside and 2% for outside & some like to have 40%. best, Barb ...
 NoIR 40% Light Amber
 NoIR 10% Medium Amber
 NoIR 2% Dark Amber
Percents (%) represent amount of visible light transmitted through each lens.
Fit-Over Sizing: 100 series Small, 700 series Medium, 900 series Large
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♥Barb♥: Dx Inflammation - Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04-Aug2010| barbliv @ hotmail.com | ABC of MP| Barb's Story|
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Posted: Sun Dec 12th, 2004 22:29 |
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Dave,
Probably at this point in time, clinicians will need to carefully screen potential MP patients for interest and ability in pursuing, on their own, the details and support necessary to succeed with the MP. It takes a lot of motivation to educate yourself, change your lifestyle and accept that you will feel worse before you feel better. I'm not sure anyone could do it without access to the information and support (if needed) on MP.com or SarcInfo.
I know of at least one practitioner who will not prescribe Benicar until the patient brings the NoIR sunglasses into the office. Some are considering a consent form to ensure compliance with all aspects of the MP because it is so much more than just Benicar and minocycline.
Best,
Meg
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DaveW
member
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Posted: Mon Dec 13th, 2004 04:51 |
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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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Foundation Staff
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Posted: Mon Dec 13th, 2004 05:08 |
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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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DaveW
member
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Posted: Mon Dec 13th, 2004 05:46 |
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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
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Posted: Tue Dec 14th, 2004 00:27 |
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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 03:59 |
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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
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Posted: Wed Dec 15th, 2004 00:53 |
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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 Inflammation - Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04-Aug2010| barbliv @ hotmail.com | ABC of MP| Barb's Story|
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Kate D.
member
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Posted: Wed Dec 15th, 2004 19:56 |
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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
member
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Posted: Thu Dec 16th, 2004 22:55 |
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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 15:43 |
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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.
member
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Posted: Tue Dec 21st, 2004 15:32 |
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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
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Posted: Tue Dec 21st, 2004 18:22 |
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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 Inflammation - Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04-Aug2010| barbliv @ hotmail.com | ABC of MP| Barb's Story|
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DaveW
member
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Posted: Sat Jan 15th, 2005 05:11 |
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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
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Posted: Mon Jan 17th, 2005 06:42 |
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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 05:46 |
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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
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Posted: Tue Jan 18th, 2005 05:56 |
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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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