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John McDonald
Foundation Director
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Posted: Sat Apr 23rd, 2005 15:45 |
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| I have been taking Benicar for 2 weeks with no detectable change. I have been taking pulsed Minocycline for 14 months per the late Dr. Brown's AP with very good results. I have been pretty much symptom free for a couple months now, excepting that I still prefer a daily NSAID. I stopped the Mino for 2 weeks for a washout. I did notice a very gradual resumption of joint pain (mild) over the 2 week washout, confirmation if I needed it (I don't) that I still have RA. I started 25 mg pulsed mino this morning. Last edited on Sat Apr 23rd, 2005 15:53 by John McDonald
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RA 125D38, MP 9/05 Ph2 12/05 Ph3 09/06, Oct07 2510, NoIRs lite exp r/t work covered up
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John McDonald
Foundation Director
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Posted: Sun Sep 25th, 2005 22:32 |
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Had to stop MP shortly after starting in April because of too much photo-sensitivity and too little darkening of my environment. This link has a paragraph on that topic. http://tinyurl.com/bvcwx
On Friday, 9/16 I resumed Benicar QID and Minocycline 25mg on alternate days. I am herxing enough at this dose to compromise work, which is travel intensive, but plan to make a way. I think this is preferable to higher dose abx without Benicar which I have done for 18 months. I'm certainly herxing noticeably again, which I had not done for months on traditional(?) AP.
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RA 125D38, MP 9/05 Ph2 12/05 Ph3 09/06, Oct07 2510, NoIRs lite exp r/t work covered up
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Aussie Barb
Member in Phase 3
| Joined: | Thu Jul 22nd, 2004 |
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Posted: Sun Sep 25th, 2005 23:04 |
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John
welcome to Full Protocol and thank you for posting.. this FAQ and the links within may be helpful.. What precautions do I need to take when I am going out or when traveling away?
let us know if you have any questions. all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| Fibromyalgia| ABC of MP| Barb's Story|
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John McDonald
Foundation Director
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Posted: Fri Oct 7th, 2005 18:44 |
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| I took a 4 day experimental break from Minocin while continuing Benicar q6h. My vision returned to normal, that is, my vision with my glasses worked properly again. Since starting MP I noticed that my eyeglass prescription seemed to be off, sometimes more than others. I've had problems with my vision prescription changing rapidly since acquiring RA in mid 2002. I thought it might be due to the Plaquenil that I used to take or possibly the disease (or aging eyes). Now after my 4 day Minocin holiday I think the vision thing must be the disease. Guess I should hold off on a new prescription until the eyes settle a bit.
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RA 125D38, MP 9/05 Ph2 12/05 Ph3 09/06, Oct07 2510, NoIRs lite exp r/t work covered up
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John McDonald
Foundation Director
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Posted: Sun Oct 16th, 2005 21:24 |
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Update - I have been taking 40mg Benicar q4h to see if that helps with the office work environment. It seems to, but I can tell that I would rather do the MP in perfect darkness. I easily detect the effects of hormonal swings if I get plenty of light. Yesterday I needed to be outdoors for a few hours. I covered well, NOir'ed and slathered with Ketoconazole but still pay a price today. This is a repeat from last week. Oddly, each time my most notable day-after symptoms has been fatigue, which I expected, and lack of urination, which I did not expect. I am drinking copious water but evidently the kidneys aren't processing it well. I'm not uncomfortable and expect to resume voiding soon so it is more a nuisance and is weird than alarming.
Last week I had a remarkable 4-day eye herx on a single 25mg dose of Minocycline. Any exposure to light made the surface of my eyes feel crawly and dry. If I removed my NOirs for a bit to study a label or something then my eyes would become rheumy.
My MP experience seems all the more remarkable to me because a few short months ago I felt perfectly asymptomatic on the Brown protocol. I had imagined that my bacterial load was quite low. It seems obvious to me now, at least per this MP model, that I carry quite a heavy load of bacteria. I can't wait to get better. I wish I could do this without work and business travel, but I am glad to be killing bacteria even if the work environment makes it awkward.
I do have some concern that I haven't been able to sustain a reqular 48 hour Minocycline dosing cycle. When I have vigorous neuro symptoms I have let them settle so I can work with clear mind and emotions for at least the major part of the work-week. That used to be 6-days, but I am satisfied to get 4 richly productive days under my belt right now.
Edit: 4:30 PM - Kidneys are working and making up lost time. Still feel bloated, but that may pass, uh, so to speak.
Last edited on Sun Oct 16th, 2005 23:34 by John McDonald
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RA 125D38, MP 9/05 Ph2 12/05 Ph3 09/06, Oct07 2510, NoIRs lite exp r/t work covered up
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Dr Trevor Marshall
Foundation Staff
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Posted: Sun Oct 16th, 2005 22:05 |
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John,
Don't sweat the 48 hour cycle. A longer cycle is just as good, maybe better. You will get worse herx each cycle, but can adjust the dose to manage that. Glad to hear you are getting along so well (OK, 'on track', anyway )
..Trevor..
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John McDonald
Foundation Director
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Posted: Wed Oct 19th, 2005 18:23 |
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So far this week has been a walk in the park, especially compared to last week. I wonder if some nest of nasties died last week. My outer eye herx, crawly and rheumy feeling is absent this week on 2 cycles so far. I have also reverted to Benicar 40mg q6h, from q4h for the last 2 weeks. I will know tomorrow if it is time to up my dose to 50mg. If so I will still wait another week. I need to visit a customer in Mass. all week next week and I expect to get more flourescent light than I want, plus I need to be sharp, well, a little anyway.
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RA 125D38, MP 9/05 Ph2 12/05 Ph3 09/06, Oct07 2510, NoIRs lite exp r/t work covered up
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John McDonald
Foundation Director
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Posted: Fri Nov 4th, 2005 19:38 |
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Update: Since my mid-October week-long monster herx (on 25mg M), phase 1 MP has been too easy. I think we killed a whole nest of (eye) bacteria in one last gasp in mid-October. Very little Minocin was tough on me before, but easy now. The only thing slowing my MP progress right now is some business travel last week and next. I had to be sharp in Boston last week so I took a week off Mino (but had lots of Benicar) all last week. When I returned I doubled my Minocycline to 50mg for 3 cycles now, and while I am herxing, it is very easy, especially compared to before mid-October. I would like to jump directly to 100mg next week but will hold at 50mg or reduce to 25mg as I have a technical seminar to teach Sunday and a conference & trade-show to attend right after. After that I jump right back in. Given my recent progress I expect to graduate to Phase II in just a couple of weeks.
Saw doc today and got prescriptions for both of the phase II abx in appropriate dose and quantities so I will acquire these in advance. Doc is a little excited about my progress. I may ask a pharmacist friend to fill and cut these for me. Will fill out phase II questionaire today or soon as time permits. I am observing good light hygiene. I asked Doc to contact staff for Phase II protocol but from previous experience she may rely on me instead. I'm not looking forward to phase II herxing but I am looking forward to getting better and better.
john
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RA 125D38, MP 9/05 Ph2 12/05 Ph3 09/06, Oct07 2510, NoIRs lite exp r/t work covered up
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John McDonald
Foundation Director
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Posted: Sun Dec 11th, 2005 20:19 |
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| NOw posting progress on Phase 2 forum. Send PM if you have questions about Rheumatoid Arthritis and MP. :::::::::::john
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RA 125D38, MP 9/05 Ph2 12/05 Ph3 09/06, Oct07 2510, NoIRs lite exp r/t work covered up
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John McDonald
Foundation Director
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Posted: Sun Dec 18th, 2005 22:52 |
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Per suggestion I am posting this summary that I made for doc here:
I started phase one, Minocycline and Benicar, on September 16, 2005 and found the protocol to be difficult. I also skipped a number of cycles so that the herxheimer effect would not interfere with my work. I took 8 or so cycles of 25mg of Minocycline until October 10th when I had a monster herx, much of it emotional, like a hyper-vigilant panic attack except without the panic. My eye sensitivity on that one dose was extreme and lasted all week with no more antibiotic. I took 5 more cycles at 25mg but with much less herxheimer effect. I took a total of 13 or more cycles of 25mg of Minocycline.
I started 50mg of Minocycline on October 31st and completed 4 cycles and this dose wasn't so bad.
On Nov. 12th I skipped 75mg. I started dosing at 100mg of Minocin plus Benicar for about 12 cycles. This is longer than I wanted to be on 100mg phase 1 as it wasn't creating much of a herxheimer but my pharmacist didn't fill my [phase II compounding] order, actually still hasn't.
On Dec. 11th I started phase II, adding a 10 day cycle of 1/8 tablet (~30mg) of [phase II med] to my alternate day dosing of Minocycline. This has restarted my herxing and light sensitivity but so far I am finding 30mg of [phase II med] to be rather easy.
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RA 125D38, MP 9/05 Ph2 12/05 Ph3 09/06, Oct07 2510, NoIRs lite exp r/t work covered up
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Posted: Mon Dec 19th, 2005 03:38 |
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Hi John,
Thanks for bringing us up-to-date with a summary of your MP history. I'm puzzled, though, as to why you skipped the 75mg mino dosing period.
Best,
Meg
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John McDonald
Foundation Director
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Posted: Mon Dec 19th, 2005 03:59 |
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Meg,
I had a monster herx on my 6th cycle at 25mg. I think on that cycle I killed off a viper's nest of bacteria in my eyes. Up until then the 25mg was very difficult. After that it just got a whole lot easier. I didn't have enough herxing at 25mg or 50mg. So I jumped over 75mg, reasoning that I could always drop back, but my hunch was right, 75mg wasn't necessary. I had some modest herxing at 100mg for a couple of cycles but I could have gone straight to phase II. It may be pertinent that I have been avoiding supplemental D and sunlight since about March 2004 and I did really well on conventional AP. My goal for MP is to trade in my "functional remission" for a permanent cure.
Now I am ending my first phase II cycle of 10 days. The good news is that I have resumed herxing, but just barely. It is year end and my travel obligations are minimal, so I may increase immediately at the next cycle. I don't plan to railroad the whole protocol, but I have a heavy overseas travel schedule looming in 2006. Right now I am at home, and it is overcast, cool and darkish outside so now is a good time to ramp up if I think I can. Do you agree?
:::::::::::john
Last edited on Mon Dec 19th, 2005 04:02 by John McDonald
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RA 125D38, MP 9/05 Ph2 12/05 Ph3 09/06, Oct07 2510, NoIRs lite exp r/t work covered up
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Posted: Mon Dec 19th, 2005 04:24 |
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John,
Irregardless of a person's medical history, we don't suggest skipping any of the mino ramping doses. Please see:
If antibiotics are effective at very low doses, why do we ramp up the dose?
It isn't just a matter of tolerating the Herx reactions. You may have missed killing intracellular bacteria that were susceptible to that dose of minocycline.
The second phase antibiotic can sneak up on you so it is best to follow the cautious ramping schedule. And also to allow the antibiotic time to work at each dosing level. Please read the posts of those who have gone before you for some hard lessons learned about intolerable Herxing. Also:
I'm eager to get well. How can I speed up my progress on the MP?
Best,
Meg
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John McDonald
Foundation Director
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Posted: Wed Dec 28th, 2005 17:03 |
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Phase 2, Cycle 2, Day 18
100mg of Celebrex this AM. Benicar Q7h for a couple days now. I haven't wanted an NSAID for many days now but starting yesterday at 3:30AM and increasing to this morning I am having an arthralgia herx, fingers, right wrist and ankles. I am (oddly perhaps) happy about the herx, else why bother with the MP. The pain is completely manageable and hopefully I am killing microbes. I haven't seen much action 'till now after 18 days on Phase 2, except some increased light sensitivity. Even that isn't nearly so great as it was on phase 1. :::::::::::::::::john
Last edited on Wed Dec 28th, 2005 17:03 by John McDonald
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RA 125D38, MP 9/05 Ph2 12/05 Ph3 09/06, Oct07 2510, NoIRs lite exp r/t work covered up
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John McDonald
Foundation Director
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Posted: Wed Dec 28th, 2005 17:30 |
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Meg,
Somehow I missed your Dec. 18 reply to this thread. Perhaps one of the computers failed us, or perhaps it was the really suspicious CPU inside my brain case. I have read one of the 2 links that you posted but one was new to me. In particular I noticed these points:
2. Stay at each dose level at least three times. If still Herxing, stay at the dose longer. 6. At least once at each dose level, consider extending the interval between doses to three days, so you can see if you get any Herx on the third day. If you do, then perhaps consider a switch to a three day cycle to help get the most Herxing out of each dose before increasing .
My questions: Would you consider mild photophobia to be herxing? That seems stronger to me near the end of my phase 2 cycle. On my 1st cycle I had nothing but very mild photophobia so I increased the long-life abx in ignorance and in contradiction to your admonition #2 above. I have a heavy SE Asia travel schedule coming up in February (opressively hot, humid and sunny climate) so I was trying to see if I could elicit heavier herxes now while I have more means to deal with them. I judge from your links that I might miss killing some microbes if I do that. Is that correct?
Would you recommend that I go back and repeat the 1st phase 2 long cycle 2 more times or proceed at the increased dose where I am finding some herxing?
I have noticed more herxing near the end of my combination cycles and I had been considering lengthening the shorter of the 2 cycles to maximize the herxing. It sounds like I should lengthen both.
:::::::::john
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RA 125D38, MP 9/05 Ph2 12/05 Ph3 09/06, Oct07 2510, NoIRs lite exp r/t work covered up
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Posted: Thu Dec 29th, 2005 01:57 |
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Hi John,
Yes, I would consider increased photophobia a Herxheimer symptom.
You can continue with your present phase two dosing if it is provoking a Herx reaction. You might also extend the shorter cycle to 3 days to see if that helps increase the Herx. If you would like more details, please post in the phases 2 and 3 forum.
Best,
Meg
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