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lenrow
Member
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Posted: Wed Jun 17th, 2009 06:06 |
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Hi everyone
I am posting for the first time here. I've started MP 2,5 month ago. I am on 75 mg of mino and 4x40 a day of benicar.
I've tried to increase to 75mg a few times but did't succeed as my IPs in the form of fatigue and muscle pains were pretty bad. This last attempt has been more successful. I found that extending mino to 72hrs helps me alot, especially the last 24 hrs out of 72 gives me a bit of a break and I can attend to my work and home duties with a bit more of enthusiasm. I am really trying to go as slow and steady as possible.
My D25 dropped in 3 month from 30 to 20, so I am quiet pleased.
My IP reactions so far are: fatigue, muscle & joints pain, shortness of breath, mouth ulcers, tingling sensations, cold sensitivity, parasthesia, flu-ey feelings . I also have eye floaters and tinnitus which have both started about 2 month preMP.
All the best to everyone here
____________________
CFS,FM Started MP-07/04/09. March 09-D1.25-68;
25D-30; June 09 25D-20, September 09 25D-13 Noirs, lowlux
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Marysue
Moderator
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Posted: Thu Jun 18th, 2009 03:21 |
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Just curious--have you tried increased Benicar? My IP sx have been similar to yours although I'm still on Benicar only for now. Even on Benicar Q5hr, my IPs were not as bad as Q6hr.
Glad to see you're making progress on the MP! 
Marysue in sunny  Florida
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Thanks Dr. Marshall and staff for all the support!
CFS/FM '95; infert/endomet '02; hypotension; cardiac IP; start light restrict. Oct08; 125D=70 25D=30 (Feb09); Benicar26Apr09; NoIRs, low light, no sun; 25D=10 (Jun09); 25D=5 (Nov09)
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lenrow
Member
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Posted: Thu Jun 18th, 2009 10:29 |
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Hi Marysue
I have increased benicar to every 4 hours and 1/2 a tablet in between on a few occasions. I think it has helped me with pain ips and probably a bit with the fatigue.
The really negative thing which is happening to me is my appetite is going out of control. I was really hoping to loose some weight on MP, but its doing completely opposite. I am just hoping it will turn other way around one day and hopefully soon.
All the best
Yelena
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CFS,FM Started MP-07/04/09. March 09-D1.25-68;
25D-30; June 09 25D-20, September 09 25D-13 Noirs, lowlux
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Artista
Member
| Joined: | Wed Jun 3rd, 2009 |
| Location: | USA |
| Posts: | 15 |
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Posted: Thu Jun 18th, 2009 13:50 |
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Hi Yelena,
Have you considered that part or all of your weight gain might be due to fluid retention due to inflammation due to bacterial die-off or IP? I have found that my weight tends to fluctuate 1 - 2 pounds depending on where I am in my mino cycle. My weight goes up during the 24 hours after I take mino & falls during the 12 hours before my next mino dose. In spite of the weight fluctuations, my pants always feel a bit more snug than pre-MP. Again, I think that this is due to fluid retention rather than increased fat. If I am right & the weight gain is really due to inflammation from the bacterial die-off, than the weight issue should resolve itself as we get to the later phases of the MP.
In the mean time, I monitor my weight very closely as I was once significantly overweight & don't want to go there again. When I get nervous that the increased weight might actually be fat rather than fluid retention, I return to my very low carb diet. This usually gets my weight back down to where I am comfortable again within a week or so.
Artista
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Premature Menopause, Hormone Imbalance, Carb Intolerance, 4/09 25D 30, Began Phase I 5/12/09, 2% NoIR Outdoors, Normal Sun Exposure, Normal Home Lighting
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lenrow
Member
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Posted: Fri Jun 19th, 2009 14:21 |
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Hi Artista,
I can tell you for sure that my weight gain is due to the fact that I just simply can not shut my mouth. I am constantly hungry. I never was skinny, but before I got sick I was exercising, but since 13 yrs ago the only thing I could manage is walking, but in the last year or so even this became a challange for me.
i also try to stay low carb as much as possible, but the amounts!!!
I don't really know the reason for this "healthy" appetite of mine but I am guessing that it could be due to the hormonal issues. I've checked my levels about 6 month ago, progesterone and testesterone were very low.
My timing of IPs keeps flactuating. At some stages I've noticed that the first 24hrs after taking mino were the worst, a week later it would be other way around.
All the best
Yelena
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CFS,FM Started MP-07/04/09. March 09-D1.25-68;
25D-30; June 09 25D-20, September 09 25D-13 Noirs, lowlux
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lenrow
Member
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Posted: Sat Jul 4th, 2009 15:56 |
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I've been on 75mg of mino for 3 weeks. The second week of the past 3 weeks was the best out of all 3 month on mp. My energy level has increased and ips were minimal. But for the last 4-5 days I've been in the pretty bad shape. Very fatigued, extremely depressed and anxious.
Also my menstrual periods became very irregular. For the last 5-6 years my periods were very heavy and prolonged, but the cycles were regular, about 28-30 days.
The last cycle I had was 21 days and I can feel another one is coming up, which would make 15 days cycle. Most probably all my neuro symptoms such as depression amd anxiety are due to the hormonal changes.
I got a prescription from my doc for clindy, but the way it is going I believe I have to stay away from modified phase 2 as I wouldn't be able to tolerate more neuro ips.
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CFS,FM Started MP-07/04/09. March 09-D1.25-68;
25D-30; June 09 25D-20, September 09 25D-13 Noirs, lowlux
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yoliesp
Member
| Joined: | Thu Jun 18th, 2009 |
| Location: | Austin, Texas USA |
| Posts: | 4 |
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Posted: Sat Aug 8th, 2009 19:32 |
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| Say I don't know about the copy and past please tell me
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Joyful
Foundation Staff
| Joined: | Fri Oct 19th, 2007 |
| Location: | USA |
| Posts: | 879 |
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Posted: Sun Aug 9th, 2009 06:54 |
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Hello yoliesp. 
I am sorry, but you are posting in someone else's progress report. Each person is to have their own report. I have moved your posts into their own thread here: http://www.curemyth1.org/view_topic.php?id=2685&forum_id=7
Please look for your posts and answers to them by clicking on that link.
Thank you. 
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MP Stories | Bacteriality | MP Search | MP Knowledge Base
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k
Member
| Joined: | Fri Oct 19th, 2007 |
| Location: | Australia |
| Posts: | 216 |
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Posted: Tue Aug 11th, 2009 10:21 |
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Hi Yelena
It sounds a little like you may be going a little fast, based on the IP you are reporting. There is much more emphasis on Benicar these days, and much less on the abx. The latest Phase 1 guidelines say that in the event of intolerable herx, firstly you should increase Benicar, but then you should drop the abx. As long as you are herxing you are making progress.
There is no reason to introduce clindy with the level of herxing you seem to be having at the moment.
The hormonal changes you report I think are reasonably common. It can be difficult to find info on this on the MP sites, but I've read of plenty of them. My period stopped completely for about 4 months, but then came back. The length of my period has decreased significantly over the course of the MP and also the symptoms I get with it have decreased significantly.
I have also had periods of significantly increased appetite during the MP (and put on weight as a result), but also times of no appetite whatsoever. From what I have read of people's experiences, sustained and significant weight loss generally tends to come after several years on the MP.
regards,
k
Last edited on Tue Aug 11th, 2009 10:26 by k
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CFS severe menorrhagia & dysmenorrhoea anxiety depression paxil 600mg calcium daily Ph1Oct07 Ph2Feb08 Ph3Sept08 25D:Jul07=50 Oct07=23 Jan08=13.2 Oct08=12.8 Sept 09=10 NoIRs cover-up low lux home lite exp r/t to work
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lenrow
Member
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Posted: Mon Sep 21st, 2009 10:15 |
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Just an update
I've been on 100mg of mino for more than 2 month. When I was just about to start phase 2 with very tolerable herxing about a week ago, I started feeling extremely bad in terms of fatigue, dizziness. I get a lot of light flashing in my eyes( I started having this flashing just a few month before MP, but now it came back big time).
I've dropped mino for now to 75mg. Taking extra benicar.
My D at the moment is 13
I've been on MP for nearly 6 month and still on phase 1- a bit disappointing.
____________________
CFS,FM Started MP-07/04/09. March 09-D1.25-68;
25D-30; June 09 25D-20, September 09 25D-13 Noirs, lowlux
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k
Member
| Joined: | Fri Oct 19th, 2007 |
| Location: | Australia |
| Posts: | 216 |
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Posted: Tue Sep 22nd, 2009 10:28 |
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You are far from the only one who is in Phase 1 for 6 months:
http://mpkb.mp-dev.com/doku.php/home:patients:mp_duration
Please don't be disappointed. Remember, as long as you are herxing, you are making progress! Herxing = killing bugs! Getting herxing is the most important thing, not what level of abx you are at.
Also remember the increased emphasis on Benicar these days, rather than the abx. The MP is a 'Benicar'-protocol, not an antibiotics protocol.
Great that you D is at 13!
take care,
regards, k
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CFS severe menorrhagia & dysmenorrhoea anxiety depression paxil 600mg calcium daily Ph1Oct07 Ph2Feb08 Ph3Sept08 25D:Jul07=50 Oct07=23 Jan08=13.2 Oct08=12.8 Sept 09=10 NoIRs cover-up low lux home lite exp r/t to work
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lenrow
Member
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Posted: Tue Sep 22nd, 2009 11:48 |
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Thanks K. I love reading your posts, they are always very helpful and encouraging.
____________________
CFS,FM Started MP-07/04/09. March 09-D1.25-68;
25D-30; June 09 25D-20, September 09 25D-13 Noirs, lowlux
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lenrow
Member
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Posted: Mon Oct 5th, 2009 12:27 |
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Here we go, the weird staff started creeping up on me. I have these strange, stabbing pain travelling from the heart area to shoulder blade area, to spleen area and to lung area. It is all accompined by the shortness of breath. None of it is intolerable but very unpleasant and annoying and it has started couple of days ago . I have never experienced this before. I've dropped mino to 25mg and taking benicar every 4 hours with sl in between.
Has anyone had this kind of IP? Do I have to be concerned and see a doctor to run some tests?
I would appreciate any advice.
____________________
CFS,FM Started MP-07/04/09. March 09-D1.25-68;
25D-30; June 09 25D-20, September 09 25D-13 Noirs, lowlux
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k
Member
| Joined: | Fri Oct 19th, 2007 |
| Location: | Australia |
| Posts: | 216 |
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Posted: Tue Oct 6th, 2009 07:50 |
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Hi Yelena
Good move to increase Benicar, take it SL and to drop mino back! Well done!
I would encourage you to review the following pages:
Immunopathology
Managing immunopathology (IP)
In particular the following:
Hospitals and emergencies Is a set of symptoms worthy of a trip to the emergency room? It depends. Patients with intolerable immunopathology. (IP) are advised to first assess the severity of their symptoms. Sometimes patients can make adjustments immediately to improve intolerable symptoms.
The following kinds of IP, and the examples of intolerable symptoms which sometimes accompany them, are life-threatening, and should be taken very seriously:
Patients who have intolerable cardiac, neurological, or respiratory symptoms should take immediate and decisive action. Follow your instincts. Seek help or call for emergency assistance if you think you need it. If you are not thinking clearly or worried, ask someone to stay with you and help you problem solve. Do not drive yourself to the hospital.
I note that you said it wasn't intolerable, but that it was very unpleasant. I would say, don't get too hung up on the word 'intolerable'. If it were me, and I was experiencing symptoms that were very unpleasant and involved shortness of breath, I would be going to the doc. (Note, I have no medical expertise whatsoever, just sharing my experience).
Perhaps another way to think about it is, if you didn't suspect this was herx, would you go to the doctor? (Personally, I would be!)
I'm not intending to be 'alarmist', just urging responsible caution.
All the best,
regards, k
Last edited on Tue Oct 6th, 2009 07:54 by k
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CFS severe menorrhagia & dysmenorrhoea anxiety depression paxil 600mg calcium daily Ph1Oct07 Ph2Feb08 Ph3Sept08 25D:Jul07=50 Oct07=23 Jan08=13.2 Oct08=12.8 Sept 09=10 NoIRs cover-up low lux home lite exp r/t to work
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lenrow
Member
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Posted: Tue Oct 6th, 2009 08:30 |
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Thank you K. I just came back from my local doctor and got some referals for chest xray, ulstrasound and some blood tests. Will try to do them all tomorrow.
My pain and discomfort are still there but with less severity. I really hope they are herxes.
____________________
CFS,FM Started MP-07/04/09. March 09-D1.25-68;
25D-30; June 09 25D-20, September 09 25D-13 Noirs, lowlux
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lenrow
Member
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Posted: Fri Nov 27th, 2009 02:14 |
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Hi everyone
I am off the abxs at the moment. After dropping from 100mg of mino to 50mg I still could not handle the way I was feeling. So I've stopped mino fully about 4 weeks ago. Last week I took only 25mg once, it kept me in bed for 2 days.
So I am going to stay on olmatec only for at least another 2-3 weeks before I start experimenting with mino again. I feel that I am still herxing quiet a bit, but at least I can function better.
All the best
Yelena
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CFS,FM Started MP-07/04/09. March 09-D1.25-68;
25D-30; June 09 25D-20, September 09 25D-13 Noirs, lowlux
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Deedee
Member
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Posted: Sat Nov 28th, 2009 01:37 |
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At one point, I dropped all antibiotics for 2 months and I have restarted Phase II three times.
I am now progressing in modified Phase II. I began with smaller than normal doses and worked my way up slowly. Talk to your doctor about this. I also know someone that had to start out with a different antibiotic, which could be another option for you and your doctor to consider if you can't tolerate the mino.
I think my immune system didn't need much to kick-start. I had IP right out the door with benicar alone. I think my immune system has now killed enough bacteria that I am better able to tolerate antibiotics, even if more slowly and at smaller starting doses than some other can tolerate. For example, the mino provoked a whole lot of IP a year ago and now when on mino alone, I have very little IP. Adding another antibiotic, however, well that is a different story.
It is OK to take your time.
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Sarcoidosis lymphopathy (July 08) | 125D53 25D54 Jul08 | Ph1Aug08 Ph2Nov08 Ph1Mar09 ModPh2Aug09 Ph1Sep09 ModPh2Oct09 Ph1Dec0| ModPh2July10| 25D24 (Nov08) 25D25 (Feb09) 25D15 (May09) 25D14 (Dec09) 25D11 (Mar10)
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Deedee
Member
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Posted: Sat Nov 28th, 2009 01:37 |
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At one point, I dropped all antibiotics for 2 months and I have restarted Phase II three times.
I am now progressing in modified Phase II. I began with smaller than normal doses and worked my way up slowly. Talk to your doctor about this. I also know someone that had to start out with a different antibiotic, which could be another option for you and your doctor to consider if you can't tolerate the mino.
I think my immune system didn't need much to kick-start. I had IP right out the door with benicar alone. I think my immune system has now killed enough bacteria that I am better able to tolerate antibiotics, even if more slowly and at smaller starting doses than some other can tolerate. For example, the mino provoked a whole lot of IP a year ago and now when on mino alone, I have very little IP. Adding another antibiotic, however, well that is a different story.
It is OK to take your time.
____________________
Sarcoidosis lymphopathy (July 08) | 125D53 25D54 Jul08 | Ph1Aug08 Ph2Nov08 Ph1Mar09 ModPh2Aug09 Ph1Sep09 ModPh2Oct09 Ph1Dec0| ModPh2July10| 25D24 (Nov08) 25D25 (Feb09) 25D15 (May09) 25D14 (Dec09) 25D11 (Mar10)
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lenrow
Member
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Posted: Mon Nov 30th, 2009 04:23 |
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Thank you Deedee. When you say start out with different antibiotic, do you mean Zith or Clindy or something else?. If it is zith or clindy, can they be taken without mino?
I really do want to progress faster as I understand that on benicar only it will be a very slow road to recovery, but on the other hand I can't afford to be bedridden as I was recently on mino. So I am happy to look at other antibiotic options.
Thanks for your help again
Yelena
____________________
CFS,FM Started MP-07/04/09. March 09-D1.25-68;
25D-30; June 09 25D-20, September 09 25D-13 Noirs, lowlux
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