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Anne Scott
Member in Phase 3
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Posted: Wed Oct 24th, 2007 16:59 |
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Thanks, Meg. The links your provide are very helpful. I'm going to try taking 50mg at more frequent intervals to see if that works, and, of course, reducing all activities that are reduce-able. We'll see what happens.
Anne
Noted
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Anne Scott
Member in Phase 3
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Posted: Fri Oct 26th, 2007 22:57 |
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Update:
Benicar: 40mg. every 6 hours
Minocycline: was previously taking 75mg. every 48 hours,
for 8 doses, but see below.
Symptoms last weekend: runaway IP.
Symptoms now: Somewhat reduced (reduced by 30-50%).
What I've done with the Mino: I started taking 50mg. of Mino. every 8 hours to see if I could dampen the IP symptoms; my symptoms did become reduced somewhat. Earlier this week, I took 50mg. of Mino. every 8 hours for a total of 4 or 5 times. I am now on my 3rd day of rest following the last dose of 50mg., to see how my symptoms respond. The symptoms have not gotten worse and have stayed 30-50% reduced since my last dose of 50mg. Mino. I would like the IP symptoms to become mostly resolved (75-90%) before I try Mino. again at 75mg. I feel I'm still "herxing" somewhat today, 3 days after the last dose of 50mg. Perhaps waiting 4 or even 5 days might clear out these IP symptoms enough to start on 75mg. again. I also have to keep in mind that because much of the IP is happening in sensitive neurological areas and tissues (meninges in upper spine, and eyes, for example), I might also be dealing with symptoms that do not directly represent IP but rather symptoms that are directly coming from sensitized, maybe even damaged, nerves, due do the chronic inflammation in this area. (?) That's why it's important for me to clear out many of these IP neuro symptoms mostly before I start on 75mg. again, which increases inflammation in those areas once again. I'm hoping that those sensitive neuro areas won't be as badly hit the next time I try to take 75mg. But if they are, then I'll take 50mg. doses in between, or more frequently, in order to dampen symtoms, then will see how long the IP needs to play out again before taking the next 75mg. dose of Mino. An alternative is to just stay on 50mg., to repeat this level, until I'm more confident about the IP resolveing before progressing to 75mg.
Light/Sun issues: now: taking more precautions than before (e.g., now office is totally darkened)
Activity issues now : I'm leaving unavoidable activities involving neck/arms till after dark, if possible.
Thanks in advance to any and all who can give me feedback about my proposed Mino. plan above.
Anne
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Posted: Sat Oct 27th, 2007 00:31 |
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Thanks for checking in. We are standardizing progress reporting to make monitoring and data collection easier. Please use this simple format each time you post a report. Briefly list these details of your current situation only:
MP meds:
Include doses in mg & schedules for each, recent changes, number of days at current dose/schedule
Non-MP med use this week:
(List ongoing non-MP meds in your signature line)
Light exposure this week:
Symptoms:
List only those that are significant and recent. Indicate if any are intolerable. A rating scale of 1-10 is helpful.
Please list measures to prevent sun exposure and sunglasses in your signature line. Report current sun exposure each week (eg outside 1/2 hr daily). List ongoing non-MP meds in your signature line and report the non-MP med use each week.
I think you've figured out a regime that is going to work for you. This is exactly what needs to be done.....individual experimentation within the MP paramters.
An increase in symptoms that correlates with MP therapy is due to immunopathology. This includes neuro immunopathology also.
I'm glad you are able to avoid sun exposure a bit better and get more rest. Many folks say their immunopathology is only relieved by rest. Hang in there..............
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Anne Scott
Member in Phase 3
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Posted: Sat Nov 3rd, 2007 01:54 |
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Thanks for your encouragement, Meg:
Update:
MP Meds: Benicar 40mg Q6H (since August 30)
Mino 75mg (every 2-5 days for 4 weeks)
Mino 100mg. (1 dose, starting today)
Light Exposure: 30-60 minutes of sunlight exposure per day, unavoidable.
Significant Symptoms prior to today: all symptoms tolerable; IP dwindled such that IP symptoms on 75mg. dosage of mino. were no more than 6 out of 10 (in terms of intensity) for the first 24 hours and no more than 3 out of 10 for the second 24 hours.
Symptoms while on 100mg Mino: this is just my first pill for this dosage, so the serious IP symptoms really haven't kicked in yet. Here are a few significant symptoms:
Neuro hands/feet: 6 out of 10
Neuro neck: 7 out of 10
Muscle Weakness: 5 out of 10.
Brain Fog: 4-5 out of 10.
Coping measures for strong IP symptoms: avoidance of hot baths late in IP; avoidance of sunlight whenever possible; darkest Noir's much of the day; avoidance of extra physical activity; more frequent Benicar dosing (every 4-5 hours instead of every 6 hours). Haven't had to resort to more frequent Mino. dosing yet...
Vit. D testing will happen next week.
I'll update my signature line in the next posting.
Bye for now...
Anne
(To reduce white space at the end of a post, slide the space bar on the right all the way down and move your cursor to the end of the page. Or hit the end button or the down arrow to advance the cursor to the end of the page. Then, click backspace until the while space is gone.)
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Anne Scott
Member in Phase 3
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Posted: Sat Nov 3rd, 2007 01:54 |
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| Sorry, can't seem to find out where/how to edit my signature line... Last edited on Sat Nov 3rd, 2007 01:57 by Anne Scott
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Joyful
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Posted: Sat Nov 3rd, 2007 03:33 |
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Look to top right of window.
Click on button labeled "My Account".
There will be a couple of tabbed frames.
Click on the tab labeled "Profile".
Scroll to the last couple of entries.
You get 255 characters for your signature.
List measures to prevent sun exposure, sunglasses, ongoing non-MP meds and last 25D value in your signature line << lots more info at the link.
Last edited on Sat Nov 3rd, 2007 03:37 by Joyful
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Anne Scott
Member in Phase 3
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Posted: Sat Nov 3rd, 2007 05:45 |
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Thanks much, Joyful.
Anne
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Anne Scott
Member in Phase 3
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Posted: Sun Nov 4th, 2007 19:11 |
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Greetings, Meg, Joyful, and others, here is a progress report:
MP Meds: Benicar 40mg, 4 times a day (since August 31)
Mino: 100mg., every 2-3 days (1 dose so far, almost ready for 2nd dose; currently on 3rd day between doses)
Symptoms (1-10, 10 being bad):
6-7: itching around big and little joints, but no rash
6: muscle fatigue in arms/legs
6: muscle tension, neck, shoulders
4-5: tension, cramping in feet, calves
5: brain fog, concentration
5: back fatigue/pain
4: overall fatigue
4: sinus congestion
??: throat tightness, difficulty swallowing -- don't know yet today, since I haven't talked much or eaten much yet today...This symptom tends to hit quickly...I'll have to wait and see.
Overall progress report: two little "plusses": a small gum infection that I had off and on this summer is totally gone, it appears; and "floaters" in my eyes that I'd been plagued with, for 4-5 years, have totally disappeared. Other plusses: I seem to be handling the IP's with the Mino. fairly well. I still need to get all of these symptoms above below "5" on a scale of 1 to 10 for a significant period of time (i.e., a good 12-18 hours) before I think I'm ready for Phase 2, but so far my symptoms on 100mg. of Mino. are fairly predictable. Another plus: I can avoid severe neuro IP symptoms if I keep my darkest Noir glasses glued to my face for much of the day and wear a ball cap (even inside, where my house is partially darkened). One last plus: a shipment of Benicar from Germany finally arrived, and my Walgreen's mail sevice for another shipment (via Blue Cross insurance) is due to arrive shortly, so this means I'll finally have a good supply of Benicar on hand to experiment with.
Vit. D test to happen on Monday. I hope that when the results get back I'm pleasantly surprised instead of disappointed. I'd be surprised and disappointed if the level is high, given all of my strong IP over the weeks, but who knows...
That's it for now...
Anne
Noted
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Anne Scott
Member in Phase 3
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Posted: Sat Nov 10th, 2007 22:47 |
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Dear Meg,
First, thank you for all the work you do on the MP site.
I'll be posting a "regulation-style" progress report in a day or two, but I had two questions in the meantime that don't really fit into the "update" format. Perhaps you could direct me to the correct place to find out these answers, or to move or re-post my questions in the right forum, whichever one it is. Thanks in advance for your help.
I'll also cut/paste this mssive into my benicar/mino. forum slot (if I can figure out how to do this, which I've just figured out how to do), just to see whether I might get a response that way also. Thanks.
1. The "T....Letter," which published a much-shortened version of the MP for folks to read, mentioned that of the 50 or so Lyme patients who were using the MP for 18 months, 29 of these patients were feeling some improvement, some significant improvement (so, a little over 50% were experiencing improvement). My question is: is there a follow-up study of these patients to see how the 21 persons who were not experiencing improvement are now doing, many more months later, or a study to determine why these 21 other persons were not experiencing improvement a year and a half into the MP? I am familiar with the factors that may impede progress, but I'm more interested in commentary specifically concerning these 21 persons and the original study of 50 or so Lyme patients mentioned in the "T..... Letter."
2. In the "T.....Letter," Trevor mentioned that when the immune system gets "turned on" while a person is on the MP, a person with a "turned-on" immune system, even in the absence of antibiotics, etc., may experience IP symptoms 2 to 8 weeks following the last dosage, before that person actually experiences the benefits of the protocol. Are these actually benefits that the person is experiencing (i.e., reduced bacterial load, less illness), or is the person experiencing 2 to 8 weeks of unproductive herxing, at which point the bugs re-establish themselves inside the body to do their damage once again? How does one tell in the absence of reliable blood work (which doesn't exist for Bb) what these long IP sessions are really accomplishing? I'm tempted to see how long an IP in between antibiotic doses might last, to get the full effect of a productive "herx," but when one feels unremittingly lousy because of the IP during that long time, one starts to question whether the IP is genuinely productive, or is simply an example of an immune system spinning its wheels to no good end.......
Thanks for any answers/direction you might be able to provide.
Anne
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jcwat101
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Posted: Sun Nov 11th, 2007 07:19 |
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There has not been a follow up on those patients at this time. But, I should clarify -- if you read the article more closely, the patients had been on the MP between 6 and 22 months, rather than all having been on it 18 months. For many 6-12 months is to soon to show improvement. Whether improvement is reported also is affected by whether they have taken a break. Some people take breaks and thus feel improvement sooner (while on a break) than others who don't take a break.
As to your second question, I suppose all I can say at this time is that experience has shown that people typically feel better after the IP finally has settled down. If it was just a pointless exacerbation then this would not be the case.
Joyce Waterhouse
Last edited on Sun Nov 11th, 2007 07:21 by jcwat101
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Joyful
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Posted: Sun Nov 11th, 2007 10:35 |
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Anne,
Joyce has a good point about being able to review the results at this study site to see that there many who have experienced significant recovery without the relapse the Lyme community has learned to fear. And I too would love to read any additional follow-up on the first set of results. (Hopefully there will be opportunity for the ARF to allocate resources for this sooner than later.)
As you pointed out, there aren't any good tests for knowing what is really going on in terms of level of current infection, there were some early Lyme patients on the protocol who saw their Bowen test measurements drop significantly while on the MP. (Bowen labs is not longer running that test, so that option isn't available to us now.)
One important idea to be aware of is that these tiny L-form bacteria do not replicate quickly like the better known cell walled type bacteria. I'm not sure of the replication rates exactly, but hopefully someone will provide that information. I think I've read it in one of the papers or forum postings... now where was it? 
So compared to what modern medicine recognizes as "normal" pathogenic behavior--illness in less than 2 weeks after exposure, is different for the L-form pathogens--they can take years to establish themselves in the various organs/systems in our bodies.
As I understand it, this means that taking time off from the MP may lead to you taking a little longer to complete the protocol, but you aren't going to end up right back where you started.
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jcwat101
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Posted: Sun Nov 11th, 2007 17:48 |
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I think the replication rate is generally quite slow for the vast majority of these L-form/CWD bacteria, but there may be at least one or two organisms that replicate faster (see Chicago conference DVDs -- Mattman mentions the organisms in ALS being faster reproducing).
Many have taken breaks of various lengths. I have even taken a couple fairly long breaks. Once for a month and another time for 2 months and have done fine on the MP. In general, with a long break, one is supposed to start back on lower doses or even back in phase one. But in my case, I didn't really need to do that. Most stay on Benicar, but I stopped it, since I find the Benicar's VDR activation stronger than it's palliation for me and get the least symptoms without Benicar.
How to take a break from the Marshall Protocol - MARSHALL PROTOCOL FAQs
Joyce Waterhouse
Last edited on Sun Nov 11th, 2007 17:52 by jcwat101
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Anne Scott
Member in Phase 3
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Posted: Sun Nov 11th, 2007 18:08 |
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Dear Joyce,
thanks for your informative reply. I didn't realize that the "18 month" reference in the T.... Letter was an average number. Now that I know this is the case, it makes perfect sense for those 19 or 20 persons to say that they hadn't noticed improvement yet.
Those of us committed to the protocol and seeing it through to the end (and I am one of those persons) wouldn't want to think that the prolonged IP response in many persons on the MP is a "pointless exacerbation." However, sometimes it feels that way (even though the science might say otherwise), because the IPs can last so long and can be so strong. Also, for those on the MP who have tried one inadequate treatment plan after another and who have indeed gone through the "pointless exacerbation" of many unproductive herxes over the years, it takes something of a leap of faith to continue to the end, since there aren't any reliable tests to actually "show" us, in numbers, pictures, or whatever, that the bacterial loads are actually going down, down, down.
So in a word (or two): good science, an informative website, helpful moderators, commitment to the MP, and a little faith will get all of us through this long period.
Thanks much,
Anne
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Anne Scott
Member in Phase 3
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Posted: Sun Nov 11th, 2007 18:13 |
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Hello Joyce again,
Yes, I have heard of persons taking breaks from time to time. As I mentioned to Joy, however, I'm guessing that such breaks are best taken after one has established oneself on the MP for many months. I'm barely 3 months into the MP and am still at that stage where I'm figuring out how to handle the IP business. But I'm getting better at it all the time, nearly ready for Phase 2 (yay!), and count each day completed toward that magical end-date as a little victory.
Thanks again for your postings.
Best,
Anne
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Posted: Sun Nov 11th, 2007 18:31 |
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Once you have your feet on the ground in phase one, it's a good idea to experiment with minocycline and Benicar to see how they work for you. Extend the mino dosing schedule to every 72 hours to see if more immunopathology can be provoked. And conversely, when symptoms peak (not necessarily intolerable), reduce or stop the mino dose to see if that dampens symptoms. You could also try taking lower-dose minocycline every six or 12 hours to see if mino has an anti-flammatory effect for you. When a symptom approaches intolerable try an extra Benicar to see if that measure is effective to quell the symptom. The resulting information can be added to your personal tool kit and could come in handy in the future if symptoms become intolerable and you need to adjust MP meds to manage immunopathology.
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Anne Scott
Member in Phase 3
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Posted: Sun Nov 11th, 2007 19:52 |
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Dear Meg,
thanks for the information. Yes, I've been experimenting here and there and have learned the following:
- more frequent dosing of benicar (e.g., every 4 to 5 hours) provides a little bit of inflammation relief.
- an occasional lower-dosage of mino. in between higher doses of mino. seems to interrupt the "forever IP" symptoms, allowing them to dissipate somewhat before the next dosage at that higher level (e.g., one 75 mg. dose to interrupt an IP between 100 mg. doses).
- The 3rd dosage of mino. at any level (whether 25mg, 50mg, 75mg, or 100mg) has produced the strongest IP response. This strong IP after this 3rd dose of mino. would seem to stay high indefinitely (well, up to at least 5-6 days) before I feel I need to interrupt it with 1 or 2 pills of lower-dose mino (taken 12-24 hours apart).
- More frequent dosing of mino. at the 100mg. level -- say, dosing at every 24 hours for, say, 2 or 3 doses -- will also dampen symptoms somewhat.
- It's clear that it doesn't take much to provoke my system into a full-blown immune response that not only reaches it strength by the 3rd day after the 3rd dose but would also continue for quite a while afterwards -- for how long, I don't know, because at that point it would seem to go forever and I've always needed to interrupt it. However, I am tempted to try to "ride it out" for a good week or longer by taking extra Benicar, to see whether I could really get a productive herx to come and go of its own accord, thereby getting the most die-off/killing benefit from that one dose.
Well, enough for today. Hope my experimentation above sounds sensible to you. I appreciate your feedback very much.
AnneLast edited on Mon Nov 12th, 2007 05:14 by
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jcwat101
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Posted: Mon Nov 12th, 2007 05:05 |
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Anne,
It's interesting that I didn't realize that I have a little discrepancy between the two articles.
In part one, I have 9-18 months for the Lyme patients, and in part two, I have 6-22 months. I think what probably happened is between the time I wrote the two parts of the articles, I must have looked more closely at the data and came up with the somewhat longer range.
Joyce Waterhouse
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Anne Scott
Member in Phase 3
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Posted: Mon Nov 12th, 2007 05:52 |
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Hi Joyce,
that is interesting indeed, and thanks for finding the discrepancy. The English professor in me appreciates your proofreading skills, even post-publication. The gist of the matter is that whatever range you've published, whether 9-18 months or 6 to 22 months (or whatever the two figures are [I don't have your note exactly in front of me]), suggests that there were persons using the MP who just weren't very far along yet for you or others to make a determination about their improvement. I can only assume that as the mnths have gone by, they too have noted improvements, which would be happy news for the rest of us Bb folks.
Thanks again.
Anne
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Anne Scott
Member in Phase 3
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Posted: Tue Nov 13th, 2007 00:48 |
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To anyone who has suggestions:
is there something that is compatible with MP that I can take/do to improve my thyroid function? Since getting on the MP, my body temp. has plummeted to 96.0, and is especially low when I'm dealing with a strong IP. Before starting the MP, I was taking tyrosine because it helped keep my body temp. up (because this amino acid helps promote the TSH). I understand now that tyrosine is one of the amino acids that promotes the growth of CWD bacteria, albeit not very much. I'm aware that my TH1 disease is contributing to this thyroid problem and that my thyroid has probably been affected by, infected by, CWDs, and that this problem might well resolve over time. But I'd feel a whole lot better, and I might be able to have a more positive immune response, if I were generally warmer. I'm hoping that there's something out there that I can take, which would help, and which wouldn't be another allopathic medication (I have enough of those in my system right now...), but I'm willing to try anything at this point.
Thanks.
Anne
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P.Bear R.N.
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Posted: Tue Nov 13th, 2007 07:21 |
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Anne, I think that from your symptoms you may benefit from thyroid replacement. My wicked coldness has been relieved by taking Cytomel that is a form of the active hormone T3. The problem with many if not most naturopathic solutions is that they are often in reality less regulated forms of allopathic meds; and even most naturopaths will use prescription Armour that is a combo of porcine T4, T3 and other trace hormones. I am not a fan of Iodine megadoses either. IMO it would be best to start with a thyroid panel and discuss with your physician your symptoms and see if you could try Cytomel or Armour with goal of relieving intolerable symptoms with as low a dose as is possible to keep active metabolite at least in mid normal range.
best, P.B.
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