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RM
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Posted: Fri Oct 2nd, 2009 06:02 |
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My second 25mg mino brought herx on in about an hour.
It seemed to involve everything,kidney/liver area,skin rash/itching,dizzy,cracking joints,joint pain,spasms,gut/ibs. The worst however was the lack of energy combined with the brain ip (scarey).
Been reading as much as I can on this and a worryng thing is phase 2 meds.
Where z stays in your system a lot longer some MP`ers started on clindy, but what worries me here is it seems to produce more brain herx and I dont want to go over the edge.
It seems hard to get info on phase 2/3 etc, is there a possibility to have a top section (unpostable/uneditable, ie locked) except to mods with these guides/appropaite member experiences?. Its used a lot on some technical forums I am a member of and its great for essential info/guides and always stays at the top of the forum easy excessed by all.
Last edited on Fri Oct 2nd, 2009 06:03 by RM
____________________
Sarcoidosis 30yrs ago/ then-shingles/chronic stress/depression/ibs/hypertension/CFS/Fybromyalgia. 13/07/09 reducing D.09/09/09benicar 40mg/6hr.22/10/09 mino 100mg/48hr.
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eClaire
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Posted: Fri Oct 2nd, 2009 17:14 |
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In regard to your fear of Phase 2, remember that everyone does not necessarily do the MP phases in a straight line and in the time frame as originally set out in the most recent Phase 2 document, which (I believe) is in the process of being updated.
The Phase 1 document is the key. I've been on the MP for nearly three years and because of my health and the severity of my IP I have yet to do Phase 2 (tried it for 3 cycles and it was too much for me). Indeed, my immune system could turn on enough that I won't need to do the other phases or it may be that I won't be trying the other phases for quite some time.
That is, I may enter Stage 5 before doing phases 2 and 3. My plan if that happens? Do the the other phases after Stage 5 subsides to see if I can induce any more IP. (That is, I'd start the whole process over.)
So unlike previously on the MP when we were encouraged to jump into the phases perhaps before our bodies could handle it, there is no pressure on you to do so.
My suggestion to you: Get as much healing as you can with Benicar and Mino, and then figure out where you will go from there on the protocol (e.g., a series of mod phase 2 combinations or phase 2).
Hope this helps, Claire
____________________
42mo on MP; CFS FMS MCS COPD hypermob. IBS/GERD osteopor.; 125D48 25D<4;
NoIRs during most daylight outings;
Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08 * Ph2.Oct-Nov08 * Ph1.Jan2009 * Olm.alone.Jun10
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RM
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Posted: Fri Oct 2nd, 2009 21:08 |
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Hey Claire,
Thanks for that.
The ip was quite strong on just the mino esp the neuro, I think it was more profound as on benicar only it seemed to calm the reactions I was already having and the neuro side of things had not been as good for longer than I can remember(years infact). I had my third mino this morning, actually not as bad so far (12 hrs ago) (my fingers are crossed). It seems I have spent most of my life battling these pains and this ever increasing debilitating disease (30 years). At times I think I have nothing left to fight with, I think its just my daughters that keep me going now.
I really do appreciate you getting back to me.
I will give the mino a while.
R
____________________
Sarcoidosis 30yrs ago/ then-shingles/chronic stress/depression/ibs/hypertension/CFS/Fybromyalgia. 13/07/09 reducing D.09/09/09benicar 40mg/6hr.22/10/09 mino 100mg/48hr.
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RM
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Posted: Fri Oct 2nd, 2009 21:40 |
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Been searching/reading a bit more, could I have a lot of nerve tissue infected with cwd?(as well as the brain herx I also would experience a lot of muscle spasms and twitching).
When I read about this nerve tissue infection side of things, my own signature line sort of jumped out at me.
Last edited on Fri Oct 2nd, 2009 21:59 by RM
____________________
Sarcoidosis 30yrs ago/ then-shingles/chronic stress/depression/ibs/hypertension/CFS/Fybromyalgia. 13/07/09 reducing D.09/09/09benicar 40mg/6hr.22/10/09 mino 100mg/48hr.
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eClaire
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Posted: Fri Oct 2nd, 2009 22:43 |
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Oh yeah, your signature line speaks of a good potential for nerve involvement, as it seems that CWD are drawn to areas that have been previously hurt in particular. From my reading, recovery from nerve issues takes longer so just be prepared for a long haul... just in case.
You just want to remember not to let it get too crazy. When I started the MP, another MPer contacted me who had had a similar experience in the beginning. She was about six months ahead of me on the protocol and going the same route (given the same recommendations by the moderators). She ended up not paying much mind to some ever building neuro symptoms and then, WHAM! she found herself in the emergency room because she could not handle it emotionally. She had vertigo, creepy crawlies, restless leg syndrome, and the sensation that each of her limbs was on a gyroscope independent of each other. She decided she couldn't handle the MP and quit. (She is thinking of coming back on now after trying lots of other stuff in the meantime.)
At any rate, sure enough, I had the same symptoms except I had not gotten to creepy crawlies, but the others were beginning. Because of her experience I knew I had to back down.
When your brain fog gets worse, it is sometimes difficult to recognize that you are in trouble and need to back down. I talked to another MP friend for about 8 months trying to get her to realize she needed to back down and she finally heard me. It was so frustrating trying to get through to her and watching her suffer unnecessarily.
So it is good to enlist friends and family members to help you see when you are going off the rails, and LISTEN when experienced folk on the MP tell you that they are concerned and you might want to slow down. LISTEN. They may not be right, but they just might save your sanity.
Hope this helps, Claire
____________________
42mo on MP; CFS FMS MCS COPD hypermob. IBS/GERD osteopor.; 125D48 25D<4;
NoIRs during most daylight outings;
Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08 * Ph2.Oct-Nov08 * Ph1.Jan2009 * Olm.alone.Jun10
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Dr Trevor Marshall
Foundation Staff
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Posted: Sat Oct 3rd, 2009 14:35 |
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There is little chance of reaching stage 5 until after you have been able to tolerate the phase 2 antibiotics. Further, there is no chance of entering Stage 6 (recovery) until after you have lost all sensitivity from the antibiotics, i.e., you can guzzle them like a healthy person does.
Claire, focus on stage 6, then you will understand stage 5 a little better 
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RM
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Posted: Sat Oct 3rd, 2009 14:43 |
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Hi Trevor,
Is there a better combo for my situation if its true that I might have a heavy cwd load in my nerve tissue?. Some posts say if you have bad herx on phase 1 go with clindy, but clindy I read has a more intense effect on the neuro side.
Thanks for posting,very much appreciated.
R
____________________
Sarcoidosis 30yrs ago/ then-shingles/chronic stress/depression/ibs/hypertension/CFS/Fybromyalgia. 13/07/09 reducing D.09/09/09benicar 40mg/6hr.22/10/09 mino 100mg/48hr.
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eClaire
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Posted: Sat Oct 3rd, 2009 20:46 |
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Trevor,
I understood what you said and think I have a pretty clear idea of what stage 5 and recovery means.
And while I might have confused the issue a bit, I also understand that some people must go to Benicar alone after being on abx for a short while or a long while, and doing so may mean they are in stage 5 or NOT. That is, the person may need a Benicar only break or truly be in stage 5.
We talk of stage 5 as being that place one tackles with Benicar alone after having been on the MP for a while... yes, most probably after phase 2 antibiotics.
However, what I am trying to get across is that even if someone has to go to Benicar alone for a while, it does not necessarily mean that they are through with the MP, it does not mean they are really in stage 5. This is why I said I'd probably start all over... to make sure I had no sensitivity to the abx... to discover whether I had really been going through stage 5 and was into recovery. (I'm not saying that is going to happen without the phase 2 meds even though it might... indeed, we've been told that someone could recover on Benicar alone. I fully expect to be able to go through the combinations or at least visit Phase 2 for longer than 3 cycles. )
I didn't want to get into all of that because my point was that we use the guidelines as guidelines--the phases are not written in stone and a person can drop back into another phase or go to Benicar alone without feeling like s/he is failing. The goal is tolerable.
Too often we see folk filled with hubris about how quickly they have gone through or are going through the MP combinations or about how much IP they are tolerating. People who not only could get themselves into trouble with IP but encourage others to do the same. Many of us old timers are trying to help innoculate new folk against that type of thinking.
So if I am missing something, please elaborate. Meanwhile, I'll try to be clearer so as to not confuse.
Thank you, Claire
Last edited on Sat Oct 3rd, 2009 21:00 by eClaire
____________________
42mo on MP; CFS FMS MCS COPD hypermob. IBS/GERD osteopor.; 125D48 25D<4;
NoIRs during most daylight outings;
Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08 * Ph2.Oct-Nov08 * Ph1.Jan2009 * Olm.alone.Jun10
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Dr Trevor Marshall
Foundation Staff
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Posted: Sun Oct 4th, 2009 04:32 |
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Stage 5 is when the immune system is starting to take over the job of killing bugs from the antibiotics. Unfortunately, it sometimes does this with gusto, leading to unexpected (and largely uncontrolled) immunopathology.
The immune system killing can start to occur very early in the protocol, but when it is really late it comes by surprise, and then it can be dangerous, if it is unexpected
The key is to only use the MP antibiotics when one's own immune system is not able to keep up a good pace of killing with the aid of Benicar alone. The other half of the puzzle is trying to make sure that the symptoms one is experiencing without antibiotics actually is bug-killing and not hormonal imbalance, etc. Some of the blood tests, particularly SED and BUN can be a big help in figuring this out. Or if one's sweat starts smelling of ammonia... (that's NO (nitric oxide) release similar to a rising BUN)
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RM
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Posted: Sun Oct 4th, 2009 06:33 |
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Hey Guys,
Im still worried over here, I mean I just dont know if these are warning signs but I have read here of some seasoned MP`ers ending up in hospital after starting phase 2. I dont want to end up there.
____________________
Sarcoidosis 30yrs ago/ then-shingles/chronic stress/depression/ibs/hypertension/CFS/Fybromyalgia. 13/07/09 reducing D.09/09/09benicar 40mg/6hr.22/10/09 mino 100mg/48hr.
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eClaire
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Posted: Sun Oct 4th, 2009 07:29 |
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THANKS Trevor... just what I thought.
RM... I think the best you can do to not get in trouble at any point while on the MP (particularly when using Zith, which stays in one's body longer) and end up in the hospital (no guarantees ever in life):
* Do not start Phase 2 until your 25D is in the therapeutic range (from your signature line, it looks like you are there, and so I write this here for the benefit of others).
* Keep your IP to a tolerable level (see next point).
* Learn the various ways to modulate immunopathology, especially the ways that are currently working for you, which would include reducing abx, spacing out abx, increasing Benicar, etc. Meaning, develop and have a toolbox of what works for you, which may change over time.
* Have regular lab tests as recommended by the MP. How regular you decide with your doctor based on the intensity of you IP and/or your labs as you go along.
* Follow other guidelines that apply to you: e.g., understand when help might be needed in terms of heart arrhythmia; if you are someone who ought to have oxygen on hand, then have it on hand.
* If you live with others, enlist them to help you by telling you when they think things might be getting out of hand for you.
* Listen when others with more experience express concern for you and suggest that you might consider slowing down. (Brain fog and other neuro reactions may make it difficult to listen to others so post this where you can see it. Others may not be right, but then again they may be on target and so are worth listening to.)
Others may have other suggestions, but those are mine.
Claire
Last edited on Sun Oct 4th, 2009 07:38 by eClaire
____________________
42mo on MP; CFS FMS MCS COPD hypermob. IBS/GERD osteopor.; 125D48 25D<4;
NoIRs during most daylight outings;
Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08 * Ph2.Oct-Nov08 * Ph1.Jan2009 * Olm.alone.Jun10
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RM
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Posted: Sun Oct 4th, 2009 07:52 |
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So it looks like i will start ph2 with clindy even though it targets neuro more it only stays a couple of days in the system.
Just trying to work out a dosage path best for what I perceive my symptoms/reactions to be(am aware it may change) as I am doing now listening to my reactions.
and Claire thankyou very much for taking the time to look at this with me, addressing it personnally with me and giving me some specific pointers.
Your a gem
____________________
Sarcoidosis 30yrs ago/ then-shingles/chronic stress/depression/ibs/hypertension/CFS/Fybromyalgia. 13/07/09 reducing D.09/09/09benicar 40mg/6hr.22/10/09 mino 100mg/48hr.
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eClaire
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Posted: Sun Oct 4th, 2009 11:17 |
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Thank you RM.
In theory Clindy only stays a couple of days in your system.
Do you find yourself feeling better on day two now or feeling worse?
If you feel better on day two, you may be one of the MPer's who actually benefits from more time between doses as a way to manage IP.
I bring that up given your concern regarding Clindy.
You may need to experiment with dosing. For example I was on a q96h/q72h M + C dosing schedule, and even at that I was unable to ramp M. Someone else might dose C twice a week (say MF) and M on MWF. Others are fine with the q48h hour dosing.
And don't forget to back down in the dose amount if you need to.
Additionally, while the guidelines might suggest starting at 1/4 tab, people who are concerned can start at 1/16th or 1/8th. 1/16th was too little for me and 1/8th better; however, it wasn't before long that I had to switch to the q96h/q72h schedule, as C seemed to build in my system and my sxs started to whirr up into the intolerable range, contrary to expectations.
So just pay close attention, chart your symptoms, make adjustments as necessary.
Claire
Last edited on Sun Oct 4th, 2009 11:20 by eClaire
____________________
42mo on MP; CFS FMS MCS COPD hypermob. IBS/GERD osteopor.; 125D48 25D<4;
NoIRs during most daylight outings;
Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08 * Ph2.Oct-Nov08 * Ph1.Jan2009 * Olm.alone.Jun10
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RM
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Posted: Sun Oct 4th, 2009 12:46 |
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Claire you are spot on there. I was due my mino this morning and am quite perky today.
Thats some good tips.
Thanks again
R
____________________
Sarcoidosis 30yrs ago/ then-shingles/chronic stress/depression/ibs/hypertension/CFS/Fybromyalgia. 13/07/09 reducing D.09/09/09benicar 40mg/6hr.22/10/09 mino 100mg/48hr.
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eClaire
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Posted: Mon Oct 5th, 2009 00:57 |
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If you are in the feeling better on the first day category, then you may well handle the q48h schedule. Just remember you can always keep Mino on that and take Clindy every 2nd or 3rd dose if you need to. You just have to watch your IP and try to figure out what works for you, knowing that when it gets intolerable it is generally recommended that you back down. Best to you, Claire
____________________
42mo on MP; CFS FMS MCS COPD hypermob. IBS/GERD osteopor.; 125D48 25D<4;
NoIRs during most daylight outings;
Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08 * Ph2.Oct-Nov08 * Ph1.Jan2009 * Olm.alone.Jun10
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RM
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Posted: Tue Oct 6th, 2009 21:52 |
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Hiya Everyone,
The herx is still here but at a tolerable level. i am @ 50mg mino/48hr now and the herx have not got as bad as the first 2 doses. Prob because the mental herx isnt anywhere near as bad. Getting the other stuff-liver/kidney area, ribs, top of spine, back, legs abit dizzy and shortness of breath at times, but im coping. All no where near as bad as when before i started the treatment.
Hope your all well!
and thanks again claire
Last edited on Tue Oct 6th, 2009 22:16 by RM
____________________
Sarcoidosis 30yrs ago/ then-shingles/chronic stress/depression/ibs/hypertension/CFS/Fybromyalgia. 13/07/09 reducing D.09/09/09benicar 40mg/6hr.22/10/09 mino 100mg/48hr.
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RM
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Posted: Sun Oct 11th, 2009 06:56 |
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Hi
I have had 2 seperate days with herx`s that have given me some concern after doing some reading on line here just now.
When i feel well enough i do some light excerise & stretching (i mean light-i get teased by by mates because i never break into a sweat and would be finished in under half an hour).This i have found over the years has helped greatly with muscle/joint pains and keeping them at bay.
Anyhow- after excersing on wednesday i had to walk to pick up my car from service (about 3/4 mile) i felt like my chest was being crushed and it was hard to breath,I had to sit down and this went away in a few mins, but when i got up and walked a few 100 yds more it came back, rested longer this time and it eased. Saturday experienced the same while trying to excerise this time. Prior to this i had been geting a lot of herx in my back mainly my rib area on both sides.These chest symptoms are similar to the symptoms i had when i first had sarc 30yrs ago.
RM
NB! Mods do you think my posts would be better in `Support for those independantly on the MP`?Last edited on Sun Oct 11th, 2009 07:08 by RM
____________________
Sarcoidosis 30yrs ago/ then-shingles/chronic stress/depression/ibs/hypertension/CFS/Fybromyalgia. 13/07/09 reducing D.09/09/09benicar 40mg/6hr.22/10/09 mino 100mg/48hr.
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eClaire
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Posted: Sun Oct 11th, 2009 19:04 |
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RM,
You are new to the MP. In your reading, you may come across repeated advice that rest is necessary. People starting out often have to take a break in their exercise routines. Some find that later they can start again or drop back in their abx and so that they can start again (from what I've been able to discern... people who were not as sick as others to begin with). So it is not surprising that exercise is affecting you this way.
You are pushing your body on the MP. It is working hard. Imagine trying to exercise an hour after a flu related fever goes away... while I don't know your situation in particular, this description might apply to you.
I think you need to rethink your exercise routine. If you can walk without it harming you, walking is great exercise. (Read the research for yourself.) Giving up your regular routine would be a small price to pay toward regaining your over all health and extending the period where you can lead an active life.
Listen to your body. Rest. Don't push.
Claire
Last edited on Sun Oct 11th, 2009 19:06 by eClaire
____________________
42mo on MP; CFS FMS MCS COPD hypermob. IBS/GERD osteopor.; 125D48 25D<4;
NoIRs during most daylight outings;
Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08 * Ph2.Oct-Nov08 * Ph1.Jan2009 * Olm.alone.Jun10
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Russ
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Posted: Sun Oct 11th, 2009 19:08 |
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Dr Trevor Marshall wrote: The other half of the puzzle is trying to make sure that the symptoms one is experiencing without antibiotics actually is bug-killing and not hormonal imbalance, etc. Some of the blood tests, particularly SED and BUN can be a big help in figuring this out.
Would you expect blood tests for SED and BUN to be elevated even if the only identifiable IP is in the brain and central nervous system? Or would IP in this area not increase these levels the same way that IP in other areas of the body would?
Thanks.
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Lyme, MCS, ADD, optic nerve inflammation | Phase 1: Jul '06 | Phase 3: Jul '07 | 25D: 5 ng/ml (Oct '09)
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RM
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Posted: Sun Oct 11th, 2009 20:16 |
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Claire,
In the bit i was reading, i followed the guide and took my next benicar crushed as i had my abx yesterday and was feeling a bit of the same herx today. I t worked the herx eased. So im feeling a good bit better now.
Thanks for your reply, i think you are right and i will try and rest more, i do push myself, i suppose i always have. I actually have been doing quite a lot when i reflect, back to work 5 days and trying other things as well, being too greedy too soon, i was going to crash, could feel my body grinding down(well it did stop me when walking through that park), i do need to listen to it more.
Thanks again for your words of wisdom and i`ll speak to you soon
Regards
R
Last edited on Sun Oct 11th, 2009 20:18 by RM
____________________
Sarcoidosis 30yrs ago/ then-shingles/chronic stress/depression/ibs/hypertension/CFS/Fybromyalgia. 13/07/09 reducing D.09/09/09benicar 40mg/6hr.22/10/09 mino 100mg/48hr.
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