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luxman
Member
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Posted: Wed May 6th, 2009 22:33 |
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| [Oops, double post. Edited it out.] Last edited on Wed May 6th, 2009 22:39 by luxman
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microscopic colitis(?), 24/7 dizziness, cough, tinnitus, etc. progressing since 10/2008. | 25D: 14.5 (02/2009) | Started Olmetec on 21/3/09. Started Mino 25mg 28/3/09, 50mg 7/4/09, 75mg 3/5/09. Current meds: Olmetec 40mg Q6H, Mino suspended
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Barney
Moderator
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Posted: Wed May 6th, 2009 22:45 |
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luxman wrote: So Barney, if I start Phase 2 in a month or two, perhaps I won't even need to be taking Zith? If you cannot handle it, you can do Mod Phase 2 where there is not Zith. Is that what the new shift is about?We are finding a lot of patients cannot handle Zith.
Anyway, don't need to know yet. Just wondering how I will cut pills to 1/10 size, that's something I'll have to figure out. Cutting Mino to half is difficult enough (though those tabs are tiny). I dumped them onto a paper plate (bendable) used a razor blade to divide (always hoped the cops did not show up) and had a tiny funnel to put it in a gelatin capsule I bought at the health food store. Worked good. The only one I had problem with was the one they sold me with pellets in it........they rolled all over the place.lol
I'm tracking my symptoms in a spreadsheet. I score each symptom between 0 (not present) and 5 (intolerable), and I even draw a chart of the total. The highest-ever value I had was 50 on April 20th, and afterwards, it went down gradually to below 30. As it was pretty stable there, I upped Mino to 75 mg. Sure enough, my symptoms have jumped to a 37 today (even though I took the Mino yesterday).Why are you letting it get so high? Maybe I do not get your idea here.
The pattern is still pretty vague, so I'm still not 100% convinced that I'm reacting to the MP. But on my good days, I feel better than I did in a long time. Perhaps it's too early to tell what this means, but some symptoms (like a difficulty in holding my head up due to neck muscle tiredness) are in remission.
The main problem I've experienced since upping the dose was kidney pain. It's pretty scary, even though I know that it happens all the time on the MP. As I said, my creatinine has been highish for years, and now my eGFR already started decreasing on the very first days of the therapy... I just really don't want to end up like a family member who spent the last 25 or so years of her life on dialysis.You better up your Benicar to 40mg @ 4hrs and if you need more 20mg under your tongue....be careful you can get into an IP that you will find almost impossible to get out of. Lower the abx if necessary to obtain low IPs.
Thanks for stopping by and rooting for me, I really appreciate it.
Here is some homework for you..please watch the 2 videos and print out the new Phase 1 document since it has lots of new MP info and you can read and reread at your leisure.
The new, updated Phase 1, has links to all phases and stages of MP, there is lots of info that can still help you, here is a link:
[size=http://AutoimmunityResearch.org/phase1.pdf]
I will also, give you a link to the the Prague presentation that Trevor just got back from, lots of information to move on saying that the Benicar is more important than the abx.
During the recent Workshop on Clamydial Infection in Prague, Czech Republic, I gave an overview of the therapy which has become known as "The Marshall Protocol." An HD video of that presentation is available at:
[size=http://vimeo.com/4293599]
In Prague I also summarized the Science underlying that therapy. The HD video is at [size=http://vimeo.com/4307469]
This is a lot of wonderful information. Hope you enjoy it.
HANG IN THERE, WE WILL MAKE IT!!!BARNEY 
Guaifenesin for chest congestion if needed while on MP
http://autoimmunityresearch.or/ER.pdf
print this out and keep copy in car, on your person and in your home so that family knows where it is at in case of hospitalization.
____________________
Sarcoidosis diabetes asthma| loss r/kidney| hysterectomy osteoporosis| Start MP 1/1/05| My Story| ABC of MP| Bacteriality|
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luxman
Member
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Posted: Wed May 6th, 2009 23:07 |
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Thanks again for watching over like an angel!
I take all your advice to heart.
Just a little clarification: my IP is not actually intolerable. I track 46 various symptoms that I've ever experienced. I give each of them a score like this:
0 - symptom absent
1 - symptom noticeable with little or no discomfort
2 - symptom causing mild discomfort
3 - symptom causing medium discomfort
4 - symptom causing strong discomfort
5 - symptom intolerable.
Luckily, I've never had a 5 on any symptoms, and 4s are also quite rare. Today, I've had a few threes, some twos, and quite a number of ones. (Btw., I'm even counting problems I've had for years, such as nose stuffiness or the remains of my Bell's palsy of 2001, as I hope they will flare up as a herx one day and then eventually go away).
I'm also counting my stools and add them to the total, as in my case, anything above 1 is considered abnormal.
So my score of 37 means three stools; three symptoms were causing medium discomfort (dizziness, shoulder pain, kidney pain), five symptoms were causing mild discomfort (lower abdominal pain, cough, tinnitus, lower back pain, general malaise), and some things were hardly noticeable or only momentary (nausea, nose stuffiness, sore throat, need to clear throat, tenderness under jaw bone, Bell's palsy, twitching eyelid, arm weakness, neck weakness, palpitations, frequent urination, watery urine, headache, tiredness, overall muscle weakness).
Some of these only lasted a minute or less; and such level of symptoms was not uncommon before starting the MP. I still work at my job, don't take sick days, and even exercise occasionally (though on better days than this).
I find this level of herxing (if I am herxing indeed) acceptable, and if the 50 mg cycle is any indication, my symptom levels should go below 30 soon.
And please understand that anything less than 30 is pretty good; on those days, I can forget that I'm ill for longer periods.
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microscopic colitis(?), 24/7 dizziness, cough, tinnitus, etc. progressing since 10/2008. | 25D: 14.5 (02/2009) | Started Olmetec on 21/3/09. Started Mino 25mg 28/3/09, 50mg 7/4/09, 75mg 3/5/09. Current meds: Olmetec 40mg Q6H, Mino suspended
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Barney
Moderator
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Posted: Thu May 7th, 2009 01:57 |
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Lux,
I am not sure I understand you numbering system, but if you say it is okay, I will believe it is okay.
If you have any problems, post and let us know what they are.
HANG IN THERE, WE WILL MAKE IT!!!BARNEY
____________________
Sarcoidosis diabetes asthma| loss r/kidney| hysterectomy osteoporosis| Start MP 1/1/05| My Story| ABC of MP| Bacteriality|
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luxman
Member
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Posted: Thu May 7th, 2009 15:09 |
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Barney wrote: Lux,
I am not sure I understand you numbering system, but if you say it is okay, I will believe it is okay.
If you have any problems, post and let us know what they are.
HANG IN THERE, WE WILL MAKE IT!!!BARNEY
Thanks!!
My system: each symptom gets a score. 1: weak symptom, 5: debilitating symptom.
Then I add them all up...
So if I have six debilitating symptoms, that will be 6 x 5 = 30 points.
But if I have thirty very weak symptoms, that will also be 30 x 1 = 30 points.
So maybe my scoring system could be improved a bit. Maybe a debilitating symptom should get a much higher score; after all, having 30 small annoyances such as sore throat and stuffy nose and occasional back pain and mild tinnitus aren't the same as having six debilitating problems... which I do not have, I'm just trying to think of examples here, such as, let's say, horrible dizziness, arrhythmia, excruciating joint pain, total mental incapacitation, extreme fatigue, high-grade fever, etc.
So I think I will improve my system of points...
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microscopic colitis(?), 24/7 dizziness, cough, tinnitus, etc. progressing since 10/2008. | 25D: 14.5 (02/2009) | Started Olmetec on 21/3/09. Started Mino 25mg 28/3/09, 50mg 7/4/09, 75mg 3/5/09. Current meds: Olmetec 40mg Q6H, Mino suspended
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Barney
Moderator
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Posted: Fri May 8th, 2009 00:31 |
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Yes, Lux,
I think it needs some work!!! Let me know if you find the answer.
HANG IN THERE, WE WILL MAKE IT!!!BARNEY
____________________
Sarcoidosis diabetes asthma| loss r/kidney| hysterectomy osteoporosis| Start MP 1/1/05| My Story| ABC of MP| Bacteriality|
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luxman
Member
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Posted: Tue May 19th, 2009 22:38 |
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Hi all!
After upping the Mino, I felt like even my car was herxing (weird coincidence, but I had trouble closing the driver's door: an old "symptom" that my car used to have before).
I had flank pain and was really worried about my kidneys, so I went to Q4H on the Olmetec. Now the pain is mostly gone, and I went down to Q6H again.
Symptoms come and go, as before, though I'm a bit better again. I'll see how things go; I want to have a steady two weeks before moving to 100 mg.
Thanks for listening; everyone take care now!
LM
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microscopic colitis(?), 24/7 dizziness, cough, tinnitus, etc. progressing since 10/2008. | 25D: 14.5 (02/2009) | Started Olmetec on 21/3/09. Started Mino 25mg 28/3/09, 50mg 7/4/09, 75mg 3/5/09. Current meds: Olmetec 40mg Q6H, Mino suspended
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Barney
Moderator
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Posted: Tue May 19th, 2009 23:14 |
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Lux,
SOUNDS GREAT!!!
Except, for the car...maybe a couple of Benicar would help it!!!lol
HANG IN THERE, WE WILL MAKE IT!!!BARNEY
____________________
Sarcoidosis diabetes asthma| loss r/kidney| hysterectomy osteoporosis| Start MP 1/1/05| My Story| ABC of MP| Bacteriality|
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Cynthia Schnitz
Board Staff
| Joined: | Tue Jul 29th, 2008 |
| Location: | Arizona USA |
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Posted: Wed May 20th, 2009 05:52 |
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| Lux, every time I feel anything that might be construed as an organ pain, I let it be a reminder that I am supposed to stay well hydrated, and I go get a bottle of water and start working it down. This seems to ease most such pains. It is amazing how easy it is to just let your body ask for water when it wants it, and then you're not paying attention to its all too mild request. Cynthia
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Ph1 10/08 Ph2 12/08 Ph3 6/09 125/25D 47/43 preMP 25D14 12/09 Calcium anomaly(gone?),Spondylitis,early Diverticulosis,early AMD,TypeII Diabetes(?) MyStory
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luxman
Member
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Posted: Wed May 20th, 2009 14:05 |
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Thanks for reminding me...
Ever since starting the Olmetec, I've been waking up with a completely dry mouth every morning. I'd never had that before, now it's completely constant.
Any specific reason for that?
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microscopic colitis(?), 24/7 dizziness, cough, tinnitus, etc. progressing since 10/2008. | 25D: 14.5 (02/2009) | Started Olmetec on 21/3/09. Started Mino 25mg 28/3/09, 50mg 7/4/09, 75mg 3/5/09. Current meds: Olmetec 40mg Q6H, Mino suspended
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Cynthia Schnitz
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| Joined: | Tue Jul 29th, 2008 |
| Location: | Arizona USA |
| Posts: | 774 |
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Posted: Wed May 20th, 2009 20:23 |
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| I have noticed my need for salt has gone up. I have always had problems with waking with dry mouth, so I haven't seen a change, but maybe gradually for the better. I am guessing that the increased apoptosis results in dead cells to clear (from the reduction in bacteria that prevent apoptosis), and the need to eliminate the dead bacterial products are causing a higher need for liquids thru the body, taking out my salt stores, and leaving you with not enough moisture to keep your mouth wet.
____________________
Ph1 10/08 Ph2 12/08 Ph3 6/09 125/25D 47/43 preMP 25D14 12/09 Calcium anomaly(gone?),Spondylitis,early Diverticulosis,early AMD,TypeII Diabetes(?) MyStory
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Jeannine
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| Joined: | Wed Oct 17th, 2007 |
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| Posts: | 63 |
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Posted: Sat May 23rd, 2009 00:03 |
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| If you google dry mouth at the top of this site you will find many people talk about dry mouth as IP.
____________________
CFS FM Lyme Morgellons| pain fatigue depression flulike joint pain| 2/06 1,25D-49 25D-11 9/06 25D-11 2/07 25D-?| prozac20mgqd| MPstart 7/14/06 Beni40Q6 Ph1 8/06| Mod Ph2 5/07| Ph2 date|
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luxman
Member
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Posted: Sat May 23rd, 2009 16:06 |
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Thanks, Jeannie.
Another question. Is it common to have a spontaneous flare of symptoms?
I have been feeling worse lately, though it's not intolerable.
I'm puzzled because I haven't upped my Mino, I haven't been exposed to light, I haven't exercised, I haven't eaten anything unusual... If anything, I've rested more.
Should I be concerned?
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microscopic colitis(?), 24/7 dizziness, cough, tinnitus, etc. progressing since 10/2008. | 25D: 14.5 (02/2009) | Started Olmetec on 21/3/09. Started Mino 25mg 28/3/09, 50mg 7/4/09, 75mg 3/5/09. Current meds: Olmetec 40mg Q6H, Mino suspended
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Jeannine
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Posted: Sat May 23rd, 2009 16:39 |
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| Yes it is common and I use extra Benicar mentioned in the phase 1 guidelines if it become intolerable... Some find freq mino helps or querctin if intolerable. Is your house/job light free?
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CFS FM Lyme Morgellons| pain fatigue depression flulike joint pain| 2/06 1,25D-49 25D-11 9/06 25D-11 2/07 25D-?| prozac20mgqd| MPstart 7/14/06 Beni40Q6 Ph1 8/06| Mod Ph2 5/07| Ph2 date|
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luxman
Member
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Posted: Sat May 23rd, 2009 18:05 |
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Well, the extra Olmetec doesn't do much.
I couldn't easily have a "light free" life right now, so I'm avoiding sunlight, try to stay indoors till sunset, close my blinds, and also try to stay clear of bright artificial lights as well.
One thing I've noticed to make me feel worse is light from a computer screen; something else I cannot avoid right now.
If I understand correctly, light exposure doesn't hinder recovery, all it does is add "unnecessary" (i.e. non-IP) symptoms. If so, I'm okay with that. It's not that I can't take the symptoms that I have, it's just that I get scared that it's something beyond the scope of the MP.
Once again: if I knew with 100% certainty that I have Th1 disease and that I'd get well on the MP in a given number of months, then I wouldn't give a hoot about my symptoms. They're nothing compared to what a lot of people have had over here.
____________________
microscopic colitis(?), 24/7 dizziness, cough, tinnitus, etc. progressing since 10/2008. | 25D: 14.5 (02/2009) | Started Olmetec on 21/3/09. Started Mino 25mg 28/3/09, 50mg 7/4/09, 75mg 3/5/09. Current meds: Olmetec 40mg Q6H, Mino suspended
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luxman
Member
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Posted: Fri May 29th, 2009 16:43 |
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All my symptoms are still worse than before, about the same level as during my big flare-up about a month ago. Throat lump, cough, shoulder/back pain, dizziness, muscle twitches... Also woke up with my left hand paralyzed for a minute or so, which really scared me. (I might have been lying on it, it was feeling "asleep" too, but paralyzed is NOT normal, even in that case.) I also have what some people describe as "internal tremors," i.e. a feeling of shaking, but nothing actually moving. I have this for a minute or so every morning.
My lower abdominal pain was also taking on new forms, becoming more severe and sharper for a few days. (Now it's gone back to its usual.)
I'm puzzled because I'd actually been feeling better lately, and now suddenly this... Didn't up the Mino, didn't do anything special. Might have just spent too much time in front of computers; it has been making me feel worse, though nothing like this.
I'm getting scared. Does this suggest that I have something other than Th1? (What, though? It must be systemic.)
Can IP be so haphazard and unpredictable?
____________________
microscopic colitis(?), 24/7 dizziness, cough, tinnitus, etc. progressing since 10/2008. | 25D: 14.5 (02/2009) | Started Olmetec on 21/3/09. Started Mino 25mg 28/3/09, 50mg 7/4/09, 75mg 3/5/09. Current meds: Olmetec 40mg Q6H, Mino suspended
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bobsyouruncle
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Posted: Fri May 29th, 2009 17:28 |
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Hi Luxman
I can say that the numbness, paralysed-feeling and parathesia you experienced in your hands is something I experience most nights. I have found my wrists and elbows very sensitive, due to existing swelling from Th1, to me sleeping on them. However, I have also noticed that I sometimes find my hands curling up at night quite tightly (while asleep) and then the numbness comes on. It wakes me up and I have to shake my hands out to get the blood flowing and stretch out my hands to stop the numbness. Like yourself it disappears after that. Been having this for 3 months and I have seen others mention something similar. I had Carpal Tunnel Syndrome since my Th1 flared up for the first time 8 months ago, but the night-time experience only happened once on the MP.
Regarding the rest of your Sx. Many sound like Th1 IP, at least from my reading. Everyone seems to have a level of Mino when sx is more pronounced. For me it was 50mg. I also found that my IP at that level was minor until 10 days, then it increased a lot, and after 16 days it became eratic. A moderator advised me to go up to the next level (75mg). It worked for me. My IP started cycling predictably again and I think the anti-inflammatory effect of the mino helped.
So just sharing from my experience. The MP can be a little hair raising at times. However, as Barney says ... we'll get through it.
Bob
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Sarcoidosis 2000. Sjogrens. Pituitary adenoma. Insomnia. Arthritic/muscle pain. Fatigue. DDD? Skin. D25Jan09 22.7, D25Nov09 18.8, D1,25 67.7 Jan09. Ph1 2 March 09. Ph2 9 May 09 NonMPmed: Lexapro. Ambien. NoIRs. Light/sun limited.
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luxman
Member
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Posted: Sun May 31st, 2009 18:54 |
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Thanks for all the great replies.
I have to wonder, "damn, when did I get this sick?!"
I mean, I was fine a year ago! People wondered where I'd get all that energy from! I'd play squash four times a week, and sometimes, at 10 p.m., after a ninety-minute squash game, I'd drive 60 kms to a non-stop gym, and lift weights for another hour or so!
And now I'm basically like a cripple.
What the hell has happened?! Will I ever get back to my old self? Oh God, do I want to get back there!
OK, I had Bell's palsy in 2001... And some high blood pressure every once in a while... And lately, with all this sport, a lot of joint problems... But still, I was feeling really healthy. And look at me now. Just depressing.
Tried to stay active, though. Went to the cinema to watch two films in a row. Then did some night photography, one of my long-time hobbies. It was fun, but still... I'm ill. No way around it.
I'm on Olmetec every four hours. I'll try spreading the mino out to 75 mg every three days instead of two. At least a couple of times.
I've been on 75 mg for a month now. Ten days ago, I was feeling so well that I thought about moving to 100 mg. Apparently, it would be a bad idea.
I guess I'll need to learn how to control IP. Maybe I could get through this even if I increased the dosaga, but still, it's better to learn and assemble a "toolbox."
Oh, and of course, I still have all these doubts... They're the worst part.
Thanks for the support, and for listening!
____________________
microscopic colitis(?), 24/7 dizziness, cough, tinnitus, etc. progressing since 10/2008. | 25D: 14.5 (02/2009) | Started Olmetec on 21/3/09. Started Mino 25mg 28/3/09, 50mg 7/4/09, 75mg 3/5/09. Current meds: Olmetec 40mg Q6H, Mino suspended
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Barney
Moderator
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Posted: Sun May 31st, 2009 19:30 |
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Oh Lux,
You sound so very sad......you are not alone in your doubts........you can't imagine how many times I thought I screwed up starting and staying on MP....but just about the time that would kick in....then I would get an improvement to make me know I did not make a mistake doing MP.
You are early on..........now this may sound crazy....(I had 6 surgeries in 14 months preMP) and the way I would get thru them....was to use my mind to see beyond the tunnel, being back on my feet and no more pain from the surgery. I had allergies to almost every smell in the world and they would pump me up so much with Benadryl making me so dry, that I was unable to get my tongue off the roof of my mouth.
When they took my right kidney out, I could do next to nothing in my home and I could not lay on my right side for more than 8 months.
Nothing I have had to do on MP, is as bad as all that I went thru.....and the doctors had the nerve to tell me that sarcoidosis would not kill me while they kept removing body parts.
I would suggest that you move your Mino 100mg........there is a fine line whether you move up or stay where you are or lower it. You have been on 75mg a month and was feeling good and now feeling worse....that always indicated to me that I needed to move up.
The great advantage of Mino is that you take it every other day and you can change it quickly (unlike Zith)...............plus..........20mg Benicar under your tongue can change things in a hurry too. You might even try 20mg Benicar for the sadness and see if that helps.
You are not to far away from Phase 2 or Modified Phase 2, maybe that will give you something to look forward to.
My daughter just had Bells Palsy about 2 yrs ago and she definitely needs to do MP, but don't know that she ever will even tho she sees me getting well.
Lux, you hang in there, cause we want to see you well and doing all the exercise you used to do....but get well first.
HANG IN THERE, WE WILL MAKE IT!!!!BARNEY
____________________
Sarcoidosis diabetes asthma| loss r/kidney| hysterectomy osteoporosis| Start MP 1/1/05| My Story| ABC of MP| Bacteriality|
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Cynthia Schnitz
Board Staff
| Joined: | Tue Jul 29th, 2008 |
| Location: | Arizona USA |
| Posts: | 774 |
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Posted: Sun May 31st, 2009 19:56 |
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Lux, I use to go to a gym and work out for a while. After showering and about the time I'd get home, I'd have the urge to go back to the gym and exercise again. I drew the conclusion that exercise stimulated endorphins, and a person could get addicted to exercise. In fact, I've seen people that I am sure were addicted to exercise. One of my sons past girl friends who ran a lot, could not visit us for very long before she had to get on our crummy old exercycle and pump away while the rest of us visited.
Now, personally, I don't like the idea of being addicted to anything, but the question comes to mind if it might have been possible that the endorphins being generated by your exercise might have been masking you health problems? Just food for thought. Cynthia
____________________
Ph1 10/08 Ph2 12/08 Ph3 6/09 125/25D 47/43 preMP 25D14 12/09 Calcium anomaly(gone?),Spondylitis,early Diverticulosis,early AMD,TypeII Diabetes(?) MyStory
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