 |
| Author | Post |
|---|
straightjacket
Member
| Joined: | Tue Jun 5th, 2007 |
| Location: | |
| Posts: | 21 |
| Status: |
Offline
|
|
Posted: Fri Nov 7th, 2008 18:48 |
|
First of all, I'm no longer doing MP. The science proved to be too much for me to understand myself. That was one thing...
...and ... I experienced an incredible amount of fatigue the time I was on 120 mg of Benicar. It was like being a sick and tired 80 just capable of walking instead of 20-something. I trusted that my BP would not have gone much lower than it usually was and even if it would, there were people as moderators who could even work with seemingly very low pressures.
I no longer remember the exact numbers, but I can tell you, that where as my (systolic?) BP was normally around 110, it had gone down to 65-70. Diastolic pressure had gone the same way.
Maybe I should've persevered. It was pretty odd that when I went to 80 mg's, which should still give pretty much the same effects, I was in a tolerable state. Not near normal, but ok. I don't still think that it can be concluded that what I experienced at 120 mg was a herx. I tried minocycline at full dose for some time when on 120mb benicar-> no herx. I tried the antibiotics up to the 3rd one while taking the 80mg benicar but got 0 herx. Eventually I quit.
I still don't take vitamin D but I now have dental demineralization. I'm probably going to try taking some vitamin D again and see if it has any effect. There's nothing wrong with my diet, my toothpaste is top notch and I use xylitol after I put anything in my mouth. I'm afraid there's not enough calcium in my teeth.
If eventually there's enough data I'll try it again.
____________________
fatigue,depression | Feb/07 CutD | Mar/07 NoIRs | Jun/07 Beni 40mg q8h | got no herx and quit for now
|
Julia
Advocate
|
Posted: Sat Nov 8th, 2008 10:10 |
|
Hi SJ,
I'm sorry to hear you decided to give up the MP. You were reacting to Benicar as expected, but when you started antibiotics you did it without the support and help of the medical team, so it's hard now to pinpoint why it didn't work out for you.
You recorded in the Benicar forum that your BP went down to 86/45. It was explained to you that this is not dangerous. When you experienced increased fatigue on the minimum MP dose of Benicar, you were advised to increase Benicar, but you did not do that.
I just started Benicar. Why do I feel worse?
>when I went to 80 mg's, which should still give pretty much the same effects
Where did you get that idea? 40mg every 8hrs is a bare minimum. Benicar dosage and schedules
You and your doctor have to make your own decisions, but please don't blame the MP for your failure.
The answer to your dental problems is to do the MP.
____________________
Sarcoidosis, uveitis, hypercalcaemia, osteoarthritis, eczema. MP May 04.
Leading a full life - good old MP! Julia's story
|
straightjacket
Member
| Joined: | Tue Jun 5th, 2007 |
| Location: | |
| Posts: | 21 |
| Status: |
Offline
|
|
Posted: Fri Dec 5th, 2008 17:15 |
|
Actually, I did try 160 mg for a day or two. There was no difference.
'pretty much the same effects' relates to the effects on blood pressure per the curve in Benicar instructions.
I admit that being a vegan (and not studying it enough) I may have got too little of certain essential amino acids. And I only brushed my teeth once a day. And I'm not sure if I used Xylitol religiously after meals.
So I give you the benefit of the doubt. Yet I don't appreciate you telling 'don't blame the MP for your failure'. I'm looking forward to independent researchers replicating your data.
Oh and btw, I don't know what Trevor says today but he has said that Benicar _can't_ lower BP beyond some count like 12 or so. Yet the blockade (and the resultant, BP-dropping herx ) is supposed to start only from 40mg q6h. So why did my BP go down what it did at 40 mg and practically no more after that? I'm just saying, perhaps people's reactions to these things are a bit more varied than what he has claimed in the past. And I thought it was very unsensitive of him.
Last edited on Fri Dec 5th, 2008 17:25 by straightjacket
____________________
fatigue,depression | Feb/07 CutD | Mar/07 NoIRs | Jun/07 Beni 40mg q8h | got no herx and quit for now
|
Julia
Advocate
|
Posted: Fri Dec 5th, 2008 17:36 |
|
SJ,
160mg Benicar for 'a day or two' would not be enough to build up the necessary blockade.
We all look forward to further research, and independent confirmation of the amazing results of the MP. Meanwhile, many hundreds of us have got better, having decided that the risk of the new treatment was better than the risk of further gradual decline 
My own teeth, which have been appalling all my life despite good care, are now stronger than they've ever been (what's left of them!).
____________________
Sarcoidosis, uveitis, hypercalcaemia, osteoarthritis, eczema. MP May 04.
Leading a full life - good old MP! Julia's story
|
straightjacket
Member
| Joined: | Tue Jun 5th, 2007 |
| Location: | |
| Posts: | 21 |
| Status: |
Offline
|
|
Posted: Fri Dec 5th, 2008 18:00 |
|
Ok I remember reading reports on people who felt better a fairly soon (within one day) but yeah, they might have been the odd one out.
You completely ignored one part of my message btw.
Last edited on Fri Dec 5th, 2008 18:02 by straightjacket
____________________
fatigue,depression | Feb/07 CutD | Mar/07 NoIRs | Jun/07 Beni 40mg q8h | got no herx and quit for now
|
Julia
Advocate
|
Posted: Fri Dec 5th, 2008 18:22 |
|
You must have been adding the last paragraph while I was writing. The answers to all your points are in one or other of the links about Benicar:
FDA safety insert
Benicar-Basic Information
Benicar Applications Beyond Hypertension
The need for a Benicar blockade
Why shouldn't we ramp up the dose of Benicar?
>the blockade (and the resultant, BP-dropping herx ) is supposed to start only from 40mg q6h
40mg q8hrs is the minimum for the blockade. The drop in BP that some people experience on starting Benicar is not a herx, and it is extremely rare for it to drop too low for safety.
The MP guidelines (all 3 phases) have been written for safety, and take into account the experiences of hundreds of members. They must be followed exactly if you are to succeed. It sounds as if you were experimenting rather too freely, but as we have no record of your progress beyond 'Benicar only' it isn't possible now to know what went wrong. Increasing benicar remains the first line of action when things get rough.
What to do when IP is too strong
____________________
Sarcoidosis, uveitis, hypercalcaemia, osteoarthritis, eczema. MP May 04.
Leading a full life - good old MP! Julia's story
|
straightjacket
Member
| Joined: | Tue Jun 5th, 2007 |
| Location: | |
| Posts: | 21 |
| Status: |
Offline
|
|
Posted: Fri Dec 5th, 2008 18:38 |
|
I can't remember anymore if I ramped or not. I can't see a reason though why I would have because at the time I really bought into this. Meaning I only tried 40 mg/d for the sake of curiosity but the effect on BP was ~ the same as with 80 mg/d.
Good luck to everyone in finding your answers.
____________________
fatigue,depression | Feb/07 CutD | Mar/07 NoIRs | Jun/07 Beni 40mg q8h | got no herx and quit for now
|
Markt9452
Member in Phase 3
|
Posted: Fri Dec 5th, 2008 21:28 |
|
I can't remember anymore if I ramped or not
I experienced an incredible amount of fatigue I'm probably going to try taking some vitamin D again and see if it has any effect.
That sounds like neuro herx to me.
Are you sure you don't want to reconsider?
____________________
Th1 Lyme vertigo fatigue brain fog skin lesions tinnitis 125D20 D2510 Ph1Feb08 Ph2Apr08 daily lite exp covered up NoIRs| MyStory|
|
eClaire
Member in Phase 2
| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
| Posts: | 1010 |
| Status: |
Offline
|
|
Posted: Thu Dec 11th, 2008 04:33 |
|
| BP...I haven't taken my BP in over a year. Took it the other night and it was 68/36. Yeah, low, and still I keep getting on. Claire
____________________
CFS FMS MCS COPD hypermobility IBS/GERD osteoporosis 125D48 25D8 Ph1Dec06 ModPh2Jun07 NoIRs limited outings covered up low lux home abx brk 3/2 - 5/25/08 Ph 2 10/29/2008
|
Juanita
Member in Phase 2
| Joined: | Thu May 3rd, 2007 |
| Location: | Alberta Canada |
| Posts: | 368 |
| Status: |
Offline
|
|
Posted: Thu Dec 11th, 2008 19:38 |
|
I am sorry that you've been having a rough time with your MP journey. Sometimes I read other people's stories of bouncing back within a short period of time and I want to throw snotty kleenexes at them. I had a rough phase one also. And so much muddled brain, I just couldn't understand the science behind the treatment, never mind really grasping how to juggle my meds to cope with IPs.
Fortunately for me, my whole family is on the treatment so there were other people in the house reading through the information pages and then through bacteriology.com interviews. Somehow we muddled our way through. Mods were very helpful, but I often didn't understand their instructions due to crappy mental processors on my part.
So we kept staggering forward in the hope that we'd see some of the same benefits that others farther along than us has seen in their bodies. I dealt (still do) with a lot of bitterness that nothing magical and immediate happened for me or my two sick daughters. But after 16 months.... yeah..... we are all seeing positive change that makes this rough, bumpy, upsetting, tumultuous, unsettling journey worth every pill, every moment, every ounce of commitment we spent getting here.
Mind, for us, there were no other treatment choices being offered. We'd reached a dead end, eh? Finding the MP was, for us, like finding water when dying of thirst in the desert.
This is your life, your body. So the decisions of what's best for you are yours to make. I respect that. Would you ponder the idea of weaning down to a break, talking with your doctor, redoing your blood tests, and then starting phase one again to see if the second time round it was easier? For some of us, it isn't a straight forward journey, so we have to be more patient than others are called to be.
I wish you tons of good luck, StraightJacket.
____________________
MCS, CFS, FM, CS, DH, stroke neuro, seizures, skin ca, IBS, eczema, irregular heartbeat| NoIR avoid light and D| Sept 21/07 25D-40.8ng/ml| May 7, 07 1,25D-35.8pg/ml
|
eClaire
Member in Phase 2
| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
| Posts: | 1010 |
| Status: |
Offline
|
|
Posted: Thu Dec 11th, 2008 21:27 |
|
I ditto what Juanita said. It took me 22 months to reach regular phase 2 and then I hit a brick wall and am reassessing and thinking of a redo (as Mino kicks my behind and I was not able to ramp it while in mod ph 2). For me, I know the MP is the way to go, and I just have to find the right zig zag approach for my very sick body. It would be nice to be one of the folk who have moved steadily forward, but not everyone gets that path.
Claire
____________________
CFS FMS MCS COPD hypermobility IBS/GERD osteoporosis 125D48 25D8 Ph1Dec06 ModPh2Jun07 NoIRs limited outings covered up low lux home abx brk 3/2 - 5/25/08 Ph 2 10/29/2008
|
lionel forbes
Member in Phase 3
|
Posted: Fri Dec 12th, 2008 04:26 |
|
| i have follwed the mp guidelines RELIGIOUSLY for the last 3 years,IN SPITE OF ALL THE SO_ CALLED SUFFERING ,A K A HERXES ,BECAUSE I KNEW THAT DR MARSHALL`S RESEARCH WAS ALL CORRECT, AND BECAUSE I WANTED TO GET CURED. right now, i am 95% there,and it was worth every bit of all that i put into it. regards, oh, and i thank God for bringing Trevor here to help us,.... Last edited on Fri Dec 12th, 2008 04:30 by lionel forbes
____________________
Sarcoidosis/lungs via biopsy 125D28 25D24 Ph1Jan05 Ph2Mar05 Ph3Aug/06 no other meds 25D7.8 (Nov07) NoIRs cover up
|
Current time is 08:23 | |
|
|
|
|
