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kenc
Member in Phase 3
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Posted: Wed Oct 5th, 2005 03:53 |
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I just graduated from Benicar Only ... I had to interrupt the MP to treat perianal Crohn's disease (with Metronidazole and Ciprofloxacin).
A few days before starting Mino symptoms of perianal Crohn's disease appeared (sore rectum and more frequent bowel movements). This time I took a risk. Instead of stopping the Benicar and increasing my prednisone dose I reduced my prednisone down to 2.5mg per day and started the mino. I was hoping the Mino, being a wide-spectrum anti-biotic would provide the same function as the Metro and Cipro. This appears to have worked in that the perianal symptoms have not become more severe.
I've taken 3 x 25mg doses of Mino over six days. I'm a little confused at this point. Are my symptoms the result of herx or Crohn's and why do I not see a pattern of herxing after Mino? I seem to be herxing all the time. At this point I think Aussie Barb, who always keeps us on track, will be responding with a link or two :-). Ok, ok, I'll do my homework!
My symptoms are:
- slightly sore rectum
- urge to deficate during most of the day (and night)
- more frequent bowel movements (5 to 7 per day)
- sore neck, shoulders and back
- light sensitivity
- very very mild dizziness when I get up quickly
- itchy skin (almost anywhere at any time, all though quite bearable)
- muscle fatigue (ex. sore jaw when eating or talking a lot)
- very tired (no matter how much sleep I get)
- the fear that I will never get a proper herx or that Crohn's will prevent me from completing the MP!
PS. Normally, I cannot stay at 10 mg predinsone per day or less for more than a few weeks before having to go to the hospital and being hooked up to an IV with an electrolyte solution. Also, my weight would be dropping quickly. I've been on 10 mg per day or less now for 34 days! I lost about 3 lbs of weight so far. So, I guess the Benicar must have some prednisone sparing effects, eh?
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Crohn's Disease 1984, 24May05 1,25D=33 25D=8.4, 6Sep05 1,25D=29 25D=12, 11Jun07 25D=<10.4 1,25D=10, 15Sep07 1,25D=14.2 25D=16, 12Jul05 Phase1 + pred, 12Jul06 Phase2 + pred/dexa, 14Aug07 Phase2, prednisone, dexamethasone, testosterone, aspirin, levothyr
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Aussie Barb
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Posted: Wed Oct 5th, 2005 04:08 |
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Ken
Thank you for posting...
When having the need to / starting the Mino while doing the pred weaning, it is best to take the mino 25mg at the least herxing schedule to be tolerable and to continue to be workable .. ie that is to take it at a level where it keeps you most comfortable.. because the pred weaning brings symptoms of it's own, as you know, and the Minocycline elicits the maximum Herxheimer response as its tissue concentration decays away to zero, increasing mino frequency although seeming counter-intuitive actually controls the weaning best.
The schedule may be Daily, Q12H or Q6H whichever is most comfortable for you.. you will be able to feel your level of discomfort to assess which schedule you need to use... The FAQ where this schedule can be found is My Herxheimer reaction is too strong. What should I do?
The symptoms of weaning pred can persist for weeks after weaning. The aim at all times is to achieve tolerable herxing (physical, mental, and emotional) by adjustment of all your meds dosing and schedule while diligently avoiding Light and vitamin D.. and we can work together to achieve that..
I will post the WEANING FROM STEROIDS doc here at this post for your convenience and for anyone else who may be reading here..
let us know if you have any questions, Barb ....
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| Fibromyalgia| ABC of MP| Barb's Story|
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kenc
Member in Phase 3
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Posted: Thu Oct 6th, 2005 23:29 |
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I just increased my dosage of mino from 25mg/day to 50mg/day to see what would happen - my skin just got itchier. So, I guess itchy skin is the herx. This is OK. I can live with this kind of herx. I realize I'm on 2.5mg of prednisone and the weaning from steroids posting says I should be taking 0.0mg/day of prednisone. However, the mino appears to be stopping and perhaps even reversing the progress of perianal Crohn's disease. I don't want to stop the MP again to go on the antibiotics for perianal Crohn's disease and I don't want to end up in the hospital bleeding and in excruciating pain.
Since I've had Crohn's disease I get itchy once in a while (ex. a few days every few months) and usually on my chest. However, with the mino it's all the time and it can be anywhere on my body.
If feels so good to have some evidence of progress, even if I feel like I'm being attacked by a hundred tiny mosquitoes. I like my herx.
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Crohn's Disease 1984, 24May05 1,25D=33 25D=8.4, 6Sep05 1,25D=29 25D=12, 11Jun07 25D=<10.4 1,25D=10, 15Sep07 1,25D=14.2 25D=16, 12Jul05 Phase1 + pred, 12Jul06 Phase2 + pred/dexa, 14Aug07 Phase2, prednisone, dexamethasone, testosterone, aspirin, levothyr
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Aussie Barb
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Posted: Thu Oct 6th, 2005 23:48 |
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Ken
thank you for posting.. The aim is to achieve tolerable herxing (physical, mental, and emotional) by adjustment of meds dosing and schedule however you need to, while diligently avoiding Light and vitamin D..
re "I realize I'm on 2.5mg of prednisone and the weaning from steroids posting says I should be taking 0.0mg/day of prednisone. However, the mino appears to be stopping and perhaps even reversing the progress of perianal Crohn's disease. I don't want to stop the MP again to go on the antibiotics for perianal Crohn's disease and I don't want to end up in the hospital bleeding and in excruciating pain."
The weaning doc is referring to the fact that it is not wise to begin MP on a herxing dose of mino while you are reducing the pred..
The Benicar helps to build an inflammatory blockade which assists this weaning process, and the Minocycline elicits the maximum Herxheimer response as its tissue concentration decays away to zero, so, increasing mino frequency although seeming counter-intuitive actually controls the weaning best.
see also How does Benicar work? Why is it superior to other ARBs?
Should I take it every six or eight hours?
When and why should I vary my Benicar schedule? you can use Benicar Q4H as well for any extra temporary symptoms..
or increase the frequency of the mino to slow any herxing symptoms..
thanks, Barb ....
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| Fibromyalgia| ABC of MP| Barb's Story|
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kenc
Member in Phase 3
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Posted: Fri Oct 7th, 2005 06:01 |
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Aussie Barb,
Actually, my symptoms are very tolerable. As one of the Monty Python clan said in the movie "The Holy Grail" just before he was about to fail the test and be thown into the gorge to his death: "That's eeeasy!". However, thanks for all the supporting information on controlling the herx. Someday it may not be so easy.
I've had kidney stones twice, an intestinal blockage and been down to 119 lbs gasping for breath. So far these symtoms are very easy to take.
Canuck Ken
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Crohn's Disease 1984, 24May05 1,25D=33 25D=8.4, 6Sep05 1,25D=29 25D=12, 11Jun07 25D=<10.4 1,25D=10, 15Sep07 1,25D=14.2 25D=16, 12Jul05 Phase1 + pred, 12Jul06 Phase2 + pred/dexa, 14Aug07 Phase2, prednisone, dexamethasone, testosterone, aspirin, levothyr
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kenc
Member in Phase 3
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Posted: Thu Oct 13th, 2005 23:40 |
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I'm far from experiencing a crisis, however, I'd like to share my experience with mino so far. I just took my fourth/fifth dose of mino. I'm seeing a pattern:
1) About 6 hours before taking the mino dose I begin to feel mildly nauseous. This sensation seems to increase as I get closer to taking the mino. The nausea gradually goes away after taking the mino.
2) When I wear the NOIRs my eyes become quite sore. It seems that bright light affects my eyes even with the NOIRs. I also don't think I'm getting complete relief by closing my eyes with NOIRs. However, my eyes always seem to feel good under low light with no NOIRs.
3) The itchiness that began with mino seems to peak on the day after taking mino, but continues throughout.
I cannot explain either #1 or #2. Any ideas? Given #1, #2 and #3, am I still following the best procedure? I imagine everyone is a little different, however, I think it's possible to benefit from sharing common experiences.
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Crohn's Disease 1984, 24May05 1,25D=33 25D=8.4, 6Sep05 1,25D=29 25D=12, 11Jun07 25D=<10.4 1,25D=10, 15Sep07 1,25D=14.2 25D=16, 12Jul05 Phase1 + pred, 12Jul06 Phase2 + pred/dexa, 14Aug07 Phase2, prednisone, dexamethasone, testosterone, aspirin, levothyr
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Aussie Barb
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Posted: Thu Oct 13th, 2005 23:56 |
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Ken
Thank you for posting.. also, posting your schedule and dosing at the top of your post is helpful to Staff and other Members .. thanks ...
1. this is why it may be better for you to take the mino more frequently.. QOD mino while weaning Prednisone is not recommended.. you can take the mino 25mg Q6H if necessary.. also, the Benicar can be taken as half tablets, 20mg, either Q2 or 3H as required if it is more comfortable that way.. all keeping an inflammatory blockade in place while you are weaning the Prednisone helps keep the symptoms minimal.
2. seems the less light the better. go with what is most comfortable for you indoors.. some need layers of glasses to get the light low enough outdoors.. It is expected that minimising light exposure may also help keep symptoms minimal.
3. same as 1. and 2.
let us know if you have any questions as we are happy to assist you in any way we can. thanks, Barb ....
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| Fibromyalgia| ABC of MP| Barb's Story|
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Dogster
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Posted: Fri Oct 14th, 2005 02:08 |
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Hi there.
I dont quite understand your #2, but think Barb might be right. I am one of those who need two and sometimes three layers of glasses (mild prescription sunglass, then clip on, then Noirs over that!). A little experimenting will tell you what's best. Dogster
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CFS lyme RSD: pain migraine| tylenol fioricet flexeril tramadol temazepam| acidoph guaif/cold| Q| Cut D/exp Feb05| NoIR Mar05| June05 Comm Beni Q8H| July05 mino| Jan06 PH2| Aug06 1,25D=29 25D=17|
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kenc
Member in Phase 3
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Posted: Sat Oct 15th, 2005 22:46 |
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| I'm not sure what the symbols for dosage mean (i.e. QOD, Q6H, etc.) Can you explain?
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Crohn's Disease 1984, 24May05 1,25D=33 25D=8.4, 6Sep05 1,25D=29 25D=12, 11Jun07 25D=<10.4 1,25D=10, 15Sep07 1,25D=14.2 25D=16, 12Jul05 Phase1 + pred, 12Jul06 Phase2 + pred/dexa, 14Aug07 Phase2, prednisone, dexamethasone, testosterone, aspirin, levothyr
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Aussie Barb
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Posted: Sat Oct 15th, 2005 22:51 |
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Ken
Thank you for asking..
QOD is every other day
Q6H is every 6 Hours..
see Medical Abbreviations Plus link to medical dictionary
I hope this helps, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| Fibromyalgia| ABC of MP| Barb's Story|
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kenc
Member in Phase 3
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Posted: Mon Oct 17th, 2005 22:41 |
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I've been experiencing cold syptoms during the last few days (ex. cough, fatigue, sinus dripping, headache). These new symptoms when combined with my usual herx symptoms has kept me away from work. I'm spending most of my day resting. How do I know whether my new symptoms are due to an actual cold or to herxing? Either way would it be a good idea at this time to take some of the advice I've been given to reduce the herx symptoms? I'd like to go back to work.
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Crohn's Disease 1984, 24May05 1,25D=33 25D=8.4, 6Sep05 1,25D=29 25D=12, 11Jun07 25D=<10.4 1,25D=10, 15Sep07 1,25D=14.2 25D=16, 12Jul05 Phase1 + pred, 12Jul06 Phase2 + pred/dexa, 14Aug07 Phase2, prednisone, dexamethasone, testosterone, aspirin, levothyr
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Aussie Barb
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Posted: Mon Oct 17th, 2005 22:55 |
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Ken
Thank you for posting... you should find some relief from your symptoms by using the more frequent mino dosing as advised.. It is helpful if you post your dose and schedule so we can best advise you.. thank you..
Depending on which dose you have been on.. you can go back to mino 25mg or 50mg Daily, or Q12H, and see how you are, and if you need the mino more often can do mino 25mg Q6H..
see also My doctor thinks I have an upper respiratory infection. What should I do? (Sinus infection, cold, flu, pneumonia, bronchitis) and the links within this FAQ may be helpful..
please let us know if you have any questions.. thanks, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| Fibromyalgia| ABC of MP| Barb's Story|
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DNStog
Member in Phase 3
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Posted: Tue Oct 18th, 2005 01:38 |
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kenc, I sometimes experience a short duration of "cold" symptoms when I ramp abx dosing. For most cycles, these herx symptoms were mild and short lived... the worst "cold" at 75mg Mino or Phase I.
On Phase II, I am currently experiencing cold-type herxing symptoms which are identical to the ones you described plus I do occasionally have an elevated temperature with the "colds"...all quite tolerable...the most annoying the loss of strength and energy.
Wishing you well, Donna
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Sarcoidosis/skin, joints, lungs, nerves, Raynaud's, uveitis, hypothyroid, sinus, wt. gain, Peradontal disease, GERD-hiatal hernia, breast ca 11/06, 25D7, Synthroid, Lexapro, eye vits, Milk Thistle, Quercetin, Rx glacier, cover up, 05/09 25D5, 125D11
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kenc
Member in Phase 3
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Posted: Tue Oct 18th, 2005 20:26 |
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Thanks for your response Donna. It's a relief to know that I'm not alone. I've been on 50mg mino for about a week and one-half. Yesterday I lowered my dose of mino from 50mg to 25mg in an attempt to address the problem. So far, there has been either no change or a worsening of symptoms. I've lost most of my appetite and I'm getting long periods of nausea.
My greatest fear as a Crohn's patient is rapid weight loss. Once this happens I end up in the hospital with large doses of IV prednisone. I'm worried that the loss of appetite could result in a rapid loss of weight.
I hope this problem blows away soon.
Ken
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Crohn's Disease 1984, 24May05 1,25D=33 25D=8.4, 6Sep05 1,25D=29 25D=12, 11Jun07 25D=<10.4 1,25D=10, 15Sep07 1,25D=14.2 25D=16, 12Jul05 Phase1 + pred, 12Jul06 Phase2 + pred/dexa, 14Aug07 Phase2, prednisone, dexamethasone, testosterone, aspirin, levothyr
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Aussie Barb
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Posted: Tue Oct 18th, 2005 20:40 |
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Ken
Thank you for posting... We strongly recommend against QOD mino dosing while weaning prednisone..
To hold all symptoms at tolerable with an inflammatory blockade... it is recommended to take the Benicar 40mg Q6H or its equal of half tablets Q3H, and if necessary to take frequent mino 25mg as often as required, maybe down to 25mg Q6H if necessary for safety and efficacy..
MP Board Staff Margo wrote in another thread: "I have a friend with Crohns disease who suffers recurring kidney stones. (She previously had surgery to deal with out-of-control Crohns disease.) I am hoping she will investigate the Marshall Protocol for herself. Progress reports from other people with Crohns should be very helpful to her." <<
Thanks Ken. Let us know if you have any questions.. Barb ....
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| Fibromyalgia| ABC of MP| Barb's Story|
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kenc
Member in Phase 3
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Posted: Tue Oct 18th, 2005 21:17 |
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I'm down to 25mg mino which I can take daily instead of QOD.
I've had kidney stones twice and a intestinal blockage once. I've been told by a number of women with Crohn's disease that passing a kidney stone was a lot more painful that giving birth! If the pain of kidney stones isn't enough to convince someone with Crohn's to try out the MP, I don't know what is.
I hope the Crohn's patient is not waiting for their gastroenterologist to give them the green light. My gastro does research for the University of BC. and while I was a guinea pig for genetically engineered drugs for Crohn's disease I met many other gastros in research. What shocked me the most about these gastros is the incredible level of ignorance they had on the research into the infectious pathogenisis (ex. Dr. Ira Shafran on mycobacter paratuburclulosis). It seems all they cared about was research by mega pharma on genetically engineered immune suppressing drugs. After all that's who paid their salaries. My gastro has finally admitted after more than 20 years of argument with me that the infections pathogen sis is becoming the most promising, but not the most lucrative direction for research.
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Crohn's Disease 1984, 24May05 1,25D=33 25D=8.4, 6Sep05 1,25D=29 25D=12, 11Jun07 25D=<10.4 1,25D=10, 15Sep07 1,25D=14.2 25D=16, 12Jul05 Phase1 + pred, 12Jul06 Phase2 + pred/dexa, 14Aug07 Phase2, prednisone, dexamethasone, testosterone, aspirin, levothyr
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kenc
Member in Phase 3
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Posted: Fri Nov 11th, 2005 19:34 |
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Question:
I dropped back to taking 25mg mino QOD. This has reduced the nausea to QOD. I'm been taking the mino on an empty stomach. There is no nausea when I take the mino after a meal. Is it OK to take the mino after a meal?
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Crohn's Disease 1984, 24May05 1,25D=33 25D=8.4, 6Sep05 1,25D=29 25D=12, 11Jun07 25D=<10.4 1,25D=10, 15Sep07 1,25D=14.2 25D=16, 12Jul05 Phase1 + pred, 12Jul06 Phase2 + pred/dexa, 14Aug07 Phase2, prednisone, dexamethasone, testosterone, aspirin, levothyr
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Aussie Barb
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Posted: Fri Nov 11th, 2005 19:43 |
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Hi Ken
good to see you are working all to your advantage.. see FAQ Why do we take minocycline only every other day? Why do I feel worse on the second day? What time of day should I take it? says in part: Taking minocycline with or without food will alter the amount of medication that reaches your bloodstream and is also a consideration. If you have gastric upset, then you may take it with food. The gradual increase in dosage will guarantee that the intracellular bacteria are exposed to varying dosages to achieve the maximum affect.<<
please be careful not to be pushing the herx while still weaning the prednisone as per the recommendations in the weaning doc.. The aim or the key while weaning is to achieve and maintain maximum comfort (physically, mentally, and emotionally) by adjustment of meds dosing and schedule combined with the Essential aspects of diligently avoiding Light and vitamin D..
all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| Fibromyalgia| ABC of MP| Barb's Story|
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kenc
Member in Phase 3
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Posted: Tue Dec 6th, 2005 23:59 |
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I recently learned about the value of sleep when following the Marshall Protocol. I took one week off work. I slept about 12 hrs each day. What a difference!
Normally, I get about 7 to 7.5 hours sleep each day. With the extra sleep, I have less brain fog, much more energy and just feel better all around. With this much sleep the herx has become much more tolerable.
Now that I'm back to work I try to get 10 hours sleep on weekdays and 12 to 14 hours sleep on weekends.
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Crohn's Disease 1984, 24May05 1,25D=33 25D=8.4, 6Sep05 1,25D=29 25D=12, 11Jun07 25D=<10.4 1,25D=10, 15Sep07 1,25D=14.2 25D=16, 12Jul05 Phase1 + pred, 12Jul06 Phase2 + pred/dexa, 14Aug07 Phase2, prednisone, dexamethasone, testosterone, aspirin, levothyr
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kenc
Member in Phase 3
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Posted: Wed Dec 7th, 2005 00:24 |
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Since beginning the Marshall Protocol I noticed the following conditions disappear:
1) candida infection on the corners of my mouth
2) heartburn
3) arthritis in my hands.
I used to be able to induce cramps in my hands simply by squeezing hard on something for a minute or two. No more.
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Crohn's Disease 1984, 24May05 1,25D=33 25D=8.4, 6Sep05 1,25D=29 25D=12, 11Jun07 25D=<10.4 1,25D=10, 15Sep07 1,25D=14.2 25D=16, 12Jul05 Phase1 + pred, 12Jul06 Phase2 + pred/dexa, 14Aug07 Phase2, prednisone, dexamethasone, testosterone, aspirin, levothyr
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