 |
| Author | Post |
|---|
davbrkr
Member in Phase 3
|
Posted: Thu Jul 26th, 2007 22:28 |
|
Old Link: Dave on Benicar
First POST for Phase I
Day 4
Benicar: 40mg Q6H
Minocycline: 25 mg/48hrs
Intermittent symptoms in the first 4 days of Phase I: Extreme fatigue, mini panic attacks, severe upper back & neck pain, joint stiffness, disturbed sleep, RSD burning, dizziness, nausea, malaise, zero-exercise-capacity with muscle pain. Even chewing hurts.
This is my second 48 hr Minocycline cycle. Instead of Herxing worse on the second day, so far I’ve felt worse on day 1 of each of the two 48 hr cycles. Because of a foul-up in the shipment of my Canadian Benicar order, I had my Minocycline for almost two months before starting my Benicar.
In the interim, without knowing that Minocycline degrades in the presence of water, I stored my Mino in the refrigerator where it’s too wet for a readily hydrolyzed medicine. Now I’m wondering if my Mino has degraded enough to give me a Herxheimer reaction in the first 24 hours, and have no “juice” left on day 2 where the Herxheimer reaction is expected to be worse????
Money is as much a reality as infection. Because many of us have been disabled for decades, does it make economic sense to take ALL Benicar sublingually? Since bypassing the digestive tract delivers more Benicar, would 3*40mg/8 hrs dosing be adequate???
My blood pressure has ranged from 89/54 to 115/60. I’ve routinely experienced dizziness on standing. Now that I’m drinking more water, I’m doing MUCH better. GOOD HYDRATION is critical!
____________________
Lyme, polymyalgia, RA, bedridden w/back pain 10yrs, MP7/07, Ph2 1/08, 25D20 12/07, 25D12.1 8/08, alprazoloam, Soma, Flomax, NoIRs, limited outings covered, low lux home,
|
Aussie Barb
Member in Phase 3
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19553 |
| Status: |
Offline
|
|
Posted: Thu Jul 26th, 2007 23:00 |
|
Dave
Welcome to Mino forum and thank you for posting your details. very helpful..
You will know yourself by your symptoms level, if you can extend your Benicar schedule. You are reporting a high level of symptoms. How does Benicar work? Why is it superior to other ARBs? Should I take it every six or eight hours?
In your Benicar forum you have posted that you havent covered all windows.. any natural light exposure will exacerbate symtoms. Diligent light avoidance will also help to minimise your symptoms..
I strongly encourage you to take more Benicar to minimise your symptoms when required.. Tolerable is the key to safety and efficacy.. Adjusting your meds will help you to gain valuable experience that you do need to have as you proceed thru MP.
The first recommendation to minimise symptoms.
If your Dr agrees: to minimise symptoms at any time, or if going out - as well as protecting from light, you can take an extra half tablet (20mg) Benicar any time during the cycle, or adjust the dosage to 40mg Q4H. see also in BenicarQuiklink many Members report chewing or sublingual gives faster absorption/relief..
The mino, by your reported response, seems to be potent. Not all experience the immunopathology strongest on the 2nd day.. some do, as you have experience it strongest on the first day.. It is important that you report the details as this is helpful to Staff and others. Thank you.
The aim or the key is for you to achieve and maintain tolerable symptoms (physically, mentally, and emotionally) by adjustment of your meds dosing and schedule as suited individually to you within the guidelines.
Why am I dizzy? again - light can increase all symptoms..
Do take care when changing positions... getting up more slowly, holding firmly, etc, so that you do not fall and hurt yourself.
: Lay low, stay in bed, drink adequate fluids, eat salty foods and wait for the symptoms to wane.
Checklist: basic links for MP
What precautions do I need to take when I am going out or when traveling away?
Phase One is the training ground for getting the feel of your immune response, your symptoms - and for gaining personal experience in managing all aspects of MP. ie eg including adjusting your meds, avoiding light and D and etc..
Please check all precautions / instructions in the Phase One Guideline with your Dr. Some have it printed to check with regularly. It is very important that you and your Dr know to follow the essential aspects and guidelines as written for safety and efficacy of treatment..
It is the patient's responsibility to see that the prescribing doctor is following the MP correctly. Letter of introduction for your MP supportive doctor
Make sure of diligent light avoidance, adequate Benicar, pain control, rest, relaxation, and hydration, nourishment etc.. Tools to check:
Rest is a very important part of managing and healing.. By being pushed to the limit of the tolerable immune response our body is working to capacity.
Please post your Details required, and also the further details required into your signature line to help Staff and others reading and replying < see this link for details to include. Your details enable us to assist you. There is a limit of 255 characters, and some information needs to be abbreviated. Thank You ..
Extra tips:
Regular posting and reading on the Board have been found to maximise the chance of success..
Downloadable MP Documents These Quick-Scan Tracking Charts may be helpful to you
Having a dosette and reliable alarm system.
always carry spare meds with you.
MP meds are at the top of your post. thank you.
We are happy to assist you in any way we can.. Let us know if you have any questions. all best, Barb ...
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
|
davbrkr
Member in Phase 3
|
Posted: Mon Aug 6th, 2007 20:28 |
|
Second Post
Day 15 of Phase I
Benicar: 40 mg Q6H
Minocycline: 25 mg/48 hrs.
Other Meds: Alprazaloam, Soma, Flomax
I am still having a stronger inflammatory/Herxheimer response on the first day of Minocycline administration than the second day. Sunlight exposure, even with protection (NoIR’s, zinc oxide sun block, long sleeves) triggers fatigue, headaches, RSD burning, but there is a noticeable abatement in symptom intensity and duration. I haven’t been able to fall asleep without Soma since starting Phase I. The “fall-asleep” switch isn’t working. Overall, things have improved, moderately. Panic attacks have been reduced to brief periods of anxiety/agitation over the past 10 days.
Will I need a "25, D test" to move on to the next phase when the time comes? If so, this is something I will have to bring my Doctor "up to speed" on. He's willing to help, but too busy so far to get fully engaged.
Incidentally, I referred a very sick acquaintance to the Marshall Protocol website. She has serious RSD pain, and answered "yes" to ALL 30 of the most common Lyme disease symptoms. She ended up with a Colorado physician who said he does the MP, but elected instead to put her on another protocol which includes HUGE amounts of vitamin D. You probably hear stories like this all the time. I obviously do not have the medical standing to question her doctor's judgement. Can you suggest anything I can do to help her in these circumstances?
____________________
Lyme, polymyalgia, RA, bedridden w/back pain 10yrs, MP7/07, Ph2 1/08, 25D20 12/07, 25D12.1 8/08, alprazoloam, Soma, Flomax, NoIRs, limited outings covered, low lux home,
|
Foundation Staff
.
| Joined: | Sat Jul 10th, 2004 |
| Location: | |
| Posts: | 17283 |
| Status: |
Offline
|
|
Posted: Mon Aug 6th, 2007 21:27 |
|
| You can encourage your acquaintance to post on this study site so we can help her understand the difference between protocols that merely palliate and the MP which offers a cure. If she cannot or will not do this or if she does not change to a doctor who follows the MP, there is nothing you can do but offer emotional support. Sadly, this is an all too common scenario.
|
Aussie Barb
Member in Phase 3
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19553 |
| Status: |
Offline
|
|
Posted: Tue Aug 7th, 2007 17:37 |
|
Dave
25D test before phase two is recommended. Thank you.
The first recommendation to minimise any symptoms.
If your Dr agrees: to minimise symptoms at any time, or if going out - as well as protecting from light, you can take an extra half tablet (20mg) Benicar any time during the cycle, or adjust the dosage to 40mg Q4H. see also in BenicarQuiklink many Members report chewing or sublingual gives faster absorption/relief..
all best, Barb ...
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
|
davbrkr
Member in Phase 3
|
Posted: Tue Aug 14th, 2007 23:56 |
|
Third Post
Day 23 of Phase I
Benicar: 40 mg Q6H
Minocycline: 25 mg/48 hrs.
Other Meds: Alprazaloam, Soma, Flomax
Coincident with the addition of Minocycline to Benicar-only, I developed serious neck and upper back pain, issues that had previously never been more than intermittent and minimal at best. They have persisted until the past three days and, although still present, have been demoted to a minor annoyance. Except for intermittent fatigue, and difficulty falling asleep, my herx/inflammatory reactions are minimal following my 25 mg Minocycline doses, so without objection, I’m going to increase my Mino dosage to 50 mg every-other day.
I took a 6 1/2 car trip from the Phoenix area to visit friends in Las Vegas this week. I did fine during the “very sunny” car trip (hat, 2% NoIR’s, long sleeves, sun block). After going to bed at the usual time, I was “down and very sick” for the next 24 hours. The sun exposure may have beaten me up badly. On the return trip two days later under similar circumstances, I suffered nothing more than heavy-duty fatigue.
Thanks for the help and encouragement of volunteer medical staff and others who are sharing their expertise and experience. In all its forms, this is a terrible disease suffered by people, who all too often are isolated and without hope. Friends and family do not understand why we just don't: "get a life”, and there is no real help from the medical profession.
____________________
Lyme, polymyalgia, RA, bedridden w/back pain 10yrs, MP7/07, Ph2 1/08, 25D20 12/07, 25D12.1 8/08, alprazoloam, Soma, Flomax, NoIRs, limited outings covered, low lux home,
|
Aussie Barb
Member in Phase 3
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19553 |
| Status: |
Offline
|
|
Posted: Wed Aug 15th, 2007 01:04 |
|
Thank you Dave
see the Back pain link in PAIN CONTROL thread.
Good to see you are managing well. all best, Barb ....
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
|
davbrkr
Member in Phase 3
|
Posted: Sun Aug 26th, 2007 01:54 |
|
Fourth Post, Day 34, of Phase I
Benicar: 40 mg Q6H
Minocycline: 50 mg/48 hrs.
Other Meds: Alprazaloam, Soma, Flomax
Upper back (T7) and neck pain are present, but improving. As you may recall, these symptoms had advanced from infrequent to persistent in Phase I of the MP. I’ve read the links of back problems. Thanks! Serious immunopathology which was more pronounced in the first 24 hours while on the 25 mg dose of Minocycline has shifted to day 2 on the 50 mg Mino dose. Since it has been suggested that Minocycline’s antipathogenic properties increase as the antibiotic load approaches zero, an immunopathology/herxherimer shift from day1 to day 2 following a dosage increase from 25 mg to 50 mg makes sense. At the higher dose, it takes longer for the medicine’s concentration to approach zero where it’s more effective. Although overall back pain is lower than in decades (4 back surgeries), fatigue is the worst I can ever remember. Because an extra 20 mg sublingual Benicar tablet helps so much, I have not resorted to extra Minocycline to deal with immunopathology so far. My “fall asleep” switch still is not working. Can’t sleep at night, but can in the late morning. I think that pattern is fairly common.
I have suffered for decades with chronic fungal infections. Over the past three months it has approached crisis levels. I have thrown everything at the condition I could think of - every known over the counter anti-fungal, topical and oral prescription meds, home-make concoctions using herbs, thuja cedar sap, many types of topical colloidal silver solutions and creams including sitz-baths, and combinations of all of the above with and without mild chlorox solutions. Nothing has worked for very long. Fighting this infection takes up to 4 hours per day, an overwhelming task for someone who is sick. Because my wife of almost 49 yrs has never been infected, it would seem that my immune system is simply too compromised to “get into the fight”. This may be premature, but over the past 5 days, things have improved???? I’m hoping my immune system is starting to “wake up”.
Like many others, I love cheese. Because of the vitamin D, issue I am avoiding all cheese. However it has occurred to me that some cheeses may not have added vitamin D. Feta, for example - one of my favorites - is made from goat’s milk, and may not have vitamin D. Does anyone know if there are imported cheeses that are vitamin D free?? Since few people will read this far down my thread, is this a topic that I could post elsewhere as a question where it will get a wider viewing audience?
____________________
Lyme, polymyalgia, RA, bedridden w/back pain 10yrs, MP7/07, Ph2 1/08, 25D20 12/07, 25D12.1 8/08, alprazoloam, Soma, Flomax, NoIRs, limited outings covered, low lux home,
|
Aussie Barb
Member in Phase 3
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19553 |
| Status: |
Offline
|
|
Posted: Sun Aug 26th, 2007 02:19 |
|
Dave
Thank you for your details. You are managing all well, and is good to see your fungal infection is finding some improvement. see some further tips here. I've developed an itch/ a rash. What should I do?
you can eat cheese: see Dairy Products for details. DAIRY questions & suggestions
You may wish to keep some extra benicar and water bedside to minimise disturbance thru the night and to assist going back to sleep.
If antibiotics are effective at very low doses, why do we ramp up the dose?
I have insomnia and fatigue. What should I do?
all best, Barb ...
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
|
davbrkr
Member in Phase 3
|
Posted: Sun Sep 9th, 2007 23:51 |
|
Dave in Phase I: http://marshallprotocol.com/forum20/9762.html
1 mo-17 days on Phase I
Benicar: 40 mg Q6H
Minocycline: 50 mg/48 hrs.
Other Meds: Alprazaloam, Soma, Flomax
An interesting 2 weeks since my last post. I have had the best single day in 10 yrs or more. Not only were overall pain levels generally WAY down, but I experienced enhanced neurological abilities that have been absent to long that I had forgotten they ever existed. For years now when I move my head quickly, there has been a slight delay before my eyes refocus. That delay vanished, at least for a few hours. When backing up a car, no matter how many times I look in the three mirrors, I cannot form a single image of what it looks like behind me; so backing up has become an anxiety event. I could do it for a while. The abilities are gone again, but to paraphrase Arnold: “They’ll be back.”
On my good day, I was “out-and-around” for three hrs shopping and doing “stuff” that needed doing. There is no question that I had too much sun exposure, and overdid things. Back pain which has kept me in bed off-and-on for decades was minimal on my “GOOD” day, but punished me the following two days. That’s a familiar pattern. Overall my back pain is down noticeably. Fatigue at times has been some of the worst I can remember. Immunopathology is now routinely on the SECOND day of the Minocycline cycle - actually quite predictable. 20 mg of sublingual Benicar helps. I have a long ways to go but am encouraged.
____________________
Lyme, polymyalgia, RA, bedridden w/back pain 10yrs, MP7/07, Ph2 1/08, 25D20 12/07, 25D12.1 8/08, alprazoloam, Soma, Flomax, NoIRs, limited outings covered, low lux home,
|
Aussie Barb
Member in Phase 3
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19553 |
| Status: |
Offline
|
|
Posted: Sun Sep 9th, 2007 23:54 |
|
| Thank you Dave, Good to see your improvements.. all best, Barb ...
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
|
Anne Scott
Member in Phase 3
|
Posted: Sat Sep 15th, 2007 07:06 |
|
Hi Dave,
I read your posts with interest, because I live in Arizona and have Lyme Disease as you do, but am about a month behind you in treatment. I was encouraged to see that some of your symptoms (weakness, pain, fog, etc.) have been abating somewhat. (I just posted something on the benicar/mino forum to ask how long these symptoms might last, since mine have been fairly profound, even on 25 mg. of mino every other day).
I too may have to order my meds from Canada (if Blue Cross doesn't come through) and would appreciate knowing what company you order from..).
Thanks.
Anne
____________________
Lyme babesia HHV-6 Ph1Aug07 progesterone walnut oil NoIRs cover up lite exp r/t work ModPh2Dec07 Ph2Jan08 Ph3Apr08; D=15 (4/09)
|
davbrkr
Member in Phase 3
|
Posted: Thu Oct 11th, 2007 00:19 |
|
2 mo. – 18 days in Phase I
Benicar: 40 mg Q6H
Minocycline: 50 mg/48 hrs.
Other Meds: Alprazaloam, Soma, Flomax
Supplements: None
Current Symptoms: Flu-like – mild fever, diarrhea. Neurological – burning, electrical, extreme fatigue, brain fog, poor concentration, mild but frequent panic/anxiety attacks, anger, sleep disorder, tinnitus, floaters, sound sensitivity. ALL TOLERABLE, BUT PERSISTENT for the past three weeks. Symptomatically, this represents a slight downturn, and a flat, no-progress period.
“Is there a simple way to determine if a Benicar/VDR blockade is in place?” I have two reasons for asking the question!
Reason #1: My recent $550 shipment of Benicar from a Canadian pharmacy arrived at my home in Arizona on a day when the temperature hit 116 F. Inside the mailbox it was much higher. I was gone, and did not return home until evening, so the medication sat in the mailbox and baked all day. When I called the pharmacy to see if they knew anything about the heat stability of Benicar, their chemists could only tell me that the product hydrolyzed, and should not be stored in the refrigerator. So the bottom line is: I have a three months supply of Benicar, and I don’t know how good it is, or if it’s any good at all! It would be most helpful if there were a way to test its effectiveness before I buy more since $550 is a lot of money at my house.
Thinking that the “questionable” stuff may be at something less than full potency, but still of value, I’ve been alternating good Benicar with the “cooked” stuff, and did well for a while. However, the last couple of weeks, I’ve fallen off a cliff – two weeks now of the most serious, mostly neurological immunopathology (panic attacks, RSD burning, extreme fatigue) since starting the Marshall Protocol. Now I’ m wondering if my every-other dose of “tainted” Benicar is not working, AND IF I’VE LOST MY BENICAR BLOCKADE. I acknowledge that my turn for the worse may have nothing to do with my Benicar at all, just an unexpectedly difficult time in the course of a normal healing curve.
My understanding of the Benicar basics as it parks itself on the VDR is that it does at least three things. (1) Blocks conversion of 25,D to 1,25 D. (2) Reduces inflammatory Angiotensin cytokine cascades, and (3) Lowers blood pressure.
Since the same VDR block accomplishes all three, then I’m wondering if establishing an average blood pressure baseline on “good” Benicar over a period of – let’s say - a week, and then comparing it to a similar period using “questionable” Benicar would shed any light on the issue. In other words: “Can average blood pressure, or more correctly, a change in average blood pressure give one any insight into whether or not the Benicar blockade is in place?” This is just one thought. There may be a better way.
Reason #2: My question, “Is there a simple way to determine if a Benicar/VDR blockade is in place”, really has a much larger, and much more important context. Without the unlimited resources of a pharmaceutical firm with a staff of PhD biochemists who have little better to do then answer questions like this, when any of us asks a question on a forum like, “Can I take vitamin C during my Marshall Protocol?”, the answer is understandably, “No – do not take any supplements or combine the MP with any other protocol”. I hope this does not sound like a criticism, because it is not meant to be. Unlike the government, I understand that resources have limits, be they in people, time or money. The MP is the result of brilliant work, and almost incomprehensible persistence. I cannot image Dr. Marshall battling his way, not only through the medicine and biochemistry of this protocol, but living through the pain and the doubts that were surely part of the journey. To whom did he post his questions? There had to be times when he lay awake at night in pain, and had doubts! In large measure, it’s a tribute to just plain toughness.
Because I work for a physician as a patient liaison with his very sickest Th1 patients, I talk to one or more patients daily. At times, some are in so much pain that they cannot even speak legibly. As the doctor has pointed out to me, in an academic setting one can say anything about pain and suffering, but patients in agony, desperately seeking help from their physician are looking for more than: “No” or ”Just stay in bed and stay the course”. Let me put the question of: “How can one tell if a Benicar/ VDR blockade is in place”, in a broader context. To make this as straightforward as possible, let me use a personal illustration.
I have a fungal infection piggybacking on a Th1 crippled immune system, and I know I can manage the condition with an inexpensive supplement – TriMethylGlycine (TMG) – a methyl donor. For all I know, this fungal infection is not a fungal infection at all, but is a cell wall deficient infection, and part of my Th1 disease. The same TMG has completely cured my GERD (Acid Reflux disease) after 17 years of suffering. For my “fungal/CWD” infection, TMG worked after all the over-the-counter anti-fungal preparations and expensive prescription medicines like Diflucan had become totally ineffective. It’s also worked consistently for others to whom I have recommended it. What I do know for sure is that at times this infection is worse than all other Th1 symptoms combined, and on the Marshall Protocol, TMG like all other supplements is off limits, so the infection has me by the throat again. Forget itching! If I walk very much at all, the skin in the groin area not only weeps blood, but tears and bleeds. The intense pain and distress trigger panic attacks.
What I have discovered is that invariably, those of us with “incurable fungal infections” have severely impaired METHYLATION. Methylation in simplest terms means either adding or removing a methyl group to another molecule. Adding usually turns a gene or enzyme on. Removing a methyl group does the opposite. When methylation doesn’t work well, one cannot effectively repair DNA or make adequate quantities of melatonin, seratonin, peptides and proteins including antibodies, CoQ10, glutathinone and hundreds of other important compounds. Those like me who have high homocysteine levels are “under-methylators”, because our ability to add a methyl group back to this nasty amino acid and recycle it is impaired. My homocysteine has been high forever, and totally unresponsive to the usual fix - vitamin B supplements. It would not surprise me if most Th1 victims were “under-methylators” as well. “Under-methylators” (homocysteinuria) are also subject to out-of-control fungal infections, and intractable itching. By simply adding a methyl donor supplement, some sufferers have actually had untreatable fungal infections and/or itching controlled in days after powerful anti-fungal drugs had failed completely.
If one is a Th1 sufferer on the Marshall Protocol who it itching from head to foot or suffering from a fungal infection that requires a periodic blood transfusion (over stated) it would be nice to know if an inexpensive methyl donor that does NOT interfere with the Benicar/VDR blockade could provide some relief, or if my overheated Benicar is any good!!!! Since folic acid is a methyl donor, it is clear that all methyl donors do not automatically get a pass on the MP. Someone, probably Dr. Marshall, figured this out so a method exists to know which molecules do or do not interfere with Benicar’s VDR blockade. But is there a simple way to make this determination? I also know that if I were about to be thrown into an arena where I had to face a hungry lion, and were asked whether I wanted a sword or a shield, there is only on rational answer. BOTH! I have no intention of giving up the MP. I’m betting the farm of the fact that the MP is my passport out of the dark and foreboding place where I’ve spend most of my life: “More afraid of waking up in the morning than dying in my sleep”. I don’t think a viable alternative exits, but because I know it works, if TMG is compatible with the MP, I want both.
A quick check on the Internet will produce a list of methyl donors including methionine, SAMe, TriMethylGlyine (very cheap), DiMethylGlycine, etc. The same methyl donor does not work for everyone. One size does not fit all. If there were a simple way to test for the efficacy of the Benicar/VDR blockade, then a supplement could be tried for a few days, and abandoned if it upset the Benicar/VDR blockade. I know what I am proposing is “throwing mud at the wall to see if anything sticks”, but people in pain are pragmatists. We are willing to try anything that has any chance of helping.
To restate the question: “Is there a simple way to determine if a Benicar/VDR blockade is in place?” It’s an important question because if there is, then the door is opened to other things that might decrease the interim suffering while the MP does its magic. Your thoughts will be appreciated.
____________________
Lyme, polymyalgia, RA, bedridden w/back pain 10yrs, MP7/07, Ph2 1/08, 25D20 12/07, 25D12.1 8/08, alprazoloam, Soma, Flomax, NoIRs, limited outings covered, low lux home,
|
Foundation Staff
.
| Joined: | Sat Jul 10th, 2004 |
| Location: | |
| Posts: | 17283 |
| Status: |
Offline
|
|
Posted: Thu Oct 11th, 2007 05:22 |
|
Thanks for checking in..........To maximize safety, protocol efficacy and chance of success, we expect inexperienced members (even those who think they are doing well independently) to post in their progress report weekly so Staff can catch any problems early and have details of past responses to be better able to assist you if you need help. 
I'm afraid there is no way to tell if the Benicar that was exposed to heat is effective because there are too many variables in the picture to even judge by the simple standard of symptom palliation. Recommend you chalk it up to one of life's lessons and ditch the questionable batch. 
We don't automatically prohibit all supplementation. If a supplement is not known to modulate the immune system and proves effective for an intolerable symptom, it is okay to take it. It is also okay to supplement a known deficiency. Please see Why do I have to stop my alternative treatment and avoid most supplements?
I'm sorry you've been suffering and we hope to hear from you more often.....
|
MarkN
Member in Phase 3
|
Posted: Thu Oct 11th, 2007 06:34 |
|
If I miss my 8-hour Benicar dose by even 15 or 30 minutes, I can really feel it. But maybe that's just me.
Also I did a quick forum search, and found that Joyce Waterhouse reported taking TMG, and she has done pretty well on the MP. So maybe it is OK. It's too bad that figuring these things out is so complicated ....
____________________
General insanity (Aspergers ??), CFS, some joint paint ...
11/06:1,25D=37 25D=43, 12/09:25D=5.4 ... Avoid D 12/06 ... PhaseOne 1/07, PhaseTwo 3/07, PhaseThree 9/07
|
jcwat101
Research Professional
| Joined: | Tue Jul 20th, 2004 |
| Location: | Pasadena, USA |
| Posts: | 1804 |
| Status: |
Offline
|
|
Posted: Thu Oct 11th, 2007 18:57 |
|
I did take it the first year and very rarely later. I don't know that it did anything one way or the other.
Joyce Waterhouse
____________________
20 yrs with CFS/FM/Lyme/IBS, food sensitivities; 1,25D/25D 8/04:64/11 http://SynergyHN.com
|
davbrkr
Member in Phase 3
|
Posted: Sun Oct 28th, 2007 03:01 |
|
3 mo. –4 days in Phase I
Benicar: 40 mg Q6H
Minocycline: 50 mg/48 hrs.
Other Meds: Alprazaloam, Soma, Flomax
Supplements: None
Current Symptoms: Fewer flu-like symptoms since last post. Intermittent itching, poor sleep, mild panic attacks, neurological symptoms similar to last post, 3 days of worst RA-like pain in joints of hands that resolved quickly. Major back pain! Except for back problems, overall symptoms have been fewer and less severe than the prior reporting period..
Discussion:
I had planned to check in more often, but a week ago injured my back sitting down in a chair. I have been unable to stand, walk or get to my computer. Even crawling until today was beyond my pain tolerance threshold. Over the past 36 years I have spent an average of 20 hrs. or more per day lying down. I have hurt my back in more ways than I can count, but never sitting down. For a very long time I have suspected that my back pain behaved more like a disease than trauma. It comes and goes “at will” without warning. I can go to bed with little or no pain, and wake up with a backache. After 50 years, I still don’t know to protect myself against these crippling episodes.
On a positive note, after 3 days of very severe joint pain in my hands, I’ve had my wedding ring on for 36 hours. I haven’t been able to do that for a year or more, so joint swelling in my hands is less than in some time. I have no idea how to resolve what I’ve just described. Before the back episode, my IP had been tolerable/stable long enough that I was about ready to increase my Minocycline to 75 mg. Until my back issue is resolved, I’ll hold off, and then evaluate my overall symptoms before going to the next step.
____________________
Lyme, polymyalgia, RA, bedridden w/back pain 10yrs, MP7/07, Ph2 1/08, 25D20 12/07, 25D12.1 8/08, alprazoloam, Soma, Flomax, NoIRs, limited outings covered, low lux home,
|
Foundation Staff
.
| Joined: | Sat Jul 10th, 2004 |
| Location: | |
| Posts: | 17283 |
| Status: |
Offline
|
|
Posted: Sun Oct 28th, 2007 09:31 |
|
Thanks for a clear and concise report. Please check that your signature line is up-to-date (include only the initial 1,25-D and the latest 25-D). List routine measures to prevent sun exposure, sunglasses used and ongoing non-MP meds in your signature line. Describe your recent sun exposure (eg outside 1/2 hr daily) and recent need for non-MP meds in your weekly report.
It appears you understand that back pain can be due to immunopathology. Dr. Blaney mentions that on the DVDs and it is discussed in How To Identify Immunopathology (Herx).
You are right to wait to increase mino until symptoms have been tolerable at all times for a few days.
After so many years you probably know this but.......When symptoms limit your activities, try not to stay in bed 24 hours. Rest in a recliner or on the sofa at intervals to change your position. Change positions in bed and walk as far as you are able to at regular intervals. Do gentle range of motion exercises to maintain some flexibility and strength. If your mobility is compromised, be sure you are safe when you move around. Ask for help, safety proof your home to prevent falls and equip your home with safety devices and aids for independent living.
I'm glad you've had some improvement to encourage you.......
P. S. Are you still taking the Cowden Herbs?
|
davbrkr
Member in Phase 3
|
Posted: Wed Oct 31st, 2007 09:39 |
|
3 mo. –8 days in Phase I
Benicar: 40 mg Q6H
Minocycline: 75 mg/48 hrs.
Other Meds: Alprazaloam, Soma, Flomax
Supplements: None
Current Symptoms: Intermittent itching, poor sleep, mild, increasingly less frequent panic attacks, Serious tinnitus. Back pain is resolving slowly. Should be able to walk without a walker in next 3-4 days based on past history (40+ years).
Discussion:
My back doctor for the past 26 years is also doing the MP (so is his son -Lyme/Erlichia positive). Before either of us knew anything about the MP, the Doc had taken the position that one day I would “hurt my back” as I did 9 days ago, and not walk again without a 5th surgical intervention. I’m hoping our new insight into Th1 inflammatory effects changes that prognosis.
With all other symptoms within tolerable levels, I increased my Minocycline to 75 mg three days ago. So far, so good! I am still wearing my wedding ring after 6 days, so the diminished joint swelling in my hands has held up for nearly a week. That’s after a year where I was unable to get my ring on. Still swimming daily after sunset (with my sunglasses), and have had the best swims since starting the MP in the last 3 days.
In answer to your query about Cowden herbs, I took them for the recommended 6 months BEFORE starting the MP. They helped, but left me well short of complete resolution of all symptoms. Protracted sun exposure still “killed me”. IP after starting the MP made it abundantly clear just how short the herbal remedy had fallen. I have taken no other herbals since starting the MP although I did take TMG (Betaine HCL) briefly (3 ½ weeks) for a fungal infection, which although not completely resolved, is better. The TMG seemed to help. I will take it again, but only as a last resort. I have two brand new Rife machines, and have never used either.
____________________
Lyme, polymyalgia, RA, bedridden w/back pain 10yrs, MP7/07, Ph2 1/08, 25D20 12/07, 25D12.1 8/08, alprazoloam, Soma, Flomax, NoIRs, limited outings covered, low lux home,
|
Foundation Staff
.
| Joined: | Sat Jul 10th, 2004 |
| Location: | |
| Posts: | 17283 |
| Status: |
Offline
|
|
Posted: Wed Oct 31st, 2007 17:47 |
|
It's good to know your back pain is resolving slowly. There is a discussion of back pain in this thread. Back Pain
Do you know what your 25-D is? It should be in your signature line. Cowden Herbs can be removed as it doesn't help the moderators assess your current situation. Also, list routine measures to prevent sun exposure, sunglasses used and ongoing non-MP meds in your signature line. Describe your recent sun exposure (e.g. 1 hr daily commute to work or 2 hr trip to doctor on Monday only or 2 hrs playing tennis outdoors on Friday) and recent need for palliative non-MP meds in your weekly report.
You seem to have a good handle on when to increase mino. During Phase One you will learn to identify your immune response symptoms and manage all aspects of the MP....avoiding light and vitamin D, getting adequate rest, pacing activities, eating well, etc. You will gain experience adjusting MP meds and using your personal tool kit to maintain tolerable immune system reactions. This skill will carry you smoothly through the protocol; when you have learned to manage on a day-to-day basis, you will be equipped to handle a crisis if it occurs. Carry on.....
|
Current time is 02:39 | Page: 1 2 3   |
|
|
|
|
