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Gail
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Posted: Tue Nov 17th, 2009 01:32 |
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I have been taking just the Beni and the Mino for almost 5 months now. I am doing OK, but my blood pressure has dropped quite a bit. I used to ride at about 110/72. Now I am around 90/50. And I have lost over 115 lbs. I would not be concerned except that I have been having lightheadedness ALOT. Especially when I stand or get outta breath. I am very concerned about the possible damage to my organs.
Should I stop the Beni and the Mino for awhile or should I try something else?
My medical insurance is going to United Health January 1st and I won't be able to get the Beni without out of pocket expense. Plus I am in the middle of trying to get another job and moving, possibly outta state. I'm under immense stress which is why I am taking the Xanax.
Thanks for your help!
Gail
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Sarc/lungs, uveitis, hypothyroid, palps; 25D=4/125D=30(10/06),25D=14(10/07),25D=8(6/2/08),25D=6(1/09),25D=6(11/09),25=6.5(5/10); Ph1=9/07, ModPh2=11/07, Ph2=3/08, Ph3=1/09; Beni only, Synthroid 0.88, Allegra 1qday, Prilosec 1qday, Lotemax 1-2 drops qday
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Dr Trevor Marshall
Foundation Staff
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Posted: Tue Nov 17th, 2009 02:38 |
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Postural hypotension is very common in chronic disease, and it appears as an immunopathology during early stages of the MP.
http://en.wikipedia.org/wiki/Postural_hypotension
Weaning off Benicar, while you are still at an early stage of recovery, is not something to be taken lightly. Blood pressure changes will be the least of the disease manifestations which could possibly appear. I would move Heaven and Earth to make sure you can get a continuous supply of this key drug. If you must wean, I can let Doc know how to help you get off Benicar safely. Read the info about this in the protocol guidance:
http://autoimmunityresearch.org/phase1.pdf
http://autoimmunityresearch.org/ER.pdf
Right now might be a good idea to start working down the immunopathology by dropping back the minocycline while you work things out with Doc.
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Gail
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Posted: Tue Nov 17th, 2009 03:17 |
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Thank-you for such a quick response, Dr. Marshall!!
I will try increasing water and salt, and the Beni as well as decreasing the Mino. Should I take the Mino at 50 mg daily or q48 hrs?
If I continue with the protocol, or at least the Benicar, where do I go from here?
I am willing to assume that I may be having IPs, although it surprises me since I started Phase 3 in Feb 2006. I was in Phase 3 for four months before I went into the hospital with ecoli in my blood and had my gallbladder taken out 5 days later. It has only been since then that I have been on the Beni and then the Mino.
And considering that I may have a new job and location soon, which means not being able to cover up for at least a few months because of being on probation, and not knowing what kind of insurance I will have, do you think I should continue or try to stabilize for awhile, continue on the protocol, or restart the protocol?
Thanks again!
Gail
Last edited on Tue Nov 17th, 2009 03:17 by Gail
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Sarc/lungs, uveitis, hypothyroid, palps; 25D=4/125D=30(10/06),25D=14(10/07),25D=8(6/2/08),25D=6(1/09),25D=6(11/09),25=6.5(5/10); Ph1=9/07, ModPh2=11/07, Ph2=3/08, Ph3=1/09; Beni only, Synthroid 0.88, Allegra 1qday, Prilosec 1qday, Lotemax 1-2 drops qday
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Dr Trevor Marshall
Foundation Staff
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Posted: Tue Nov 17th, 2009 03:26 |
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Sorry to be cruel-kind, Gail, but how many more gall bladders do you have to lose? Maybe the spleen next time?
Please read the guidance documents I linked. Read them very carefully. We want everybody to be successful at getting their lives back.
The moderators, and the other members, will be able to help you sort things out.
..Trevor..
ps: Have you had your 25-D measured recently?
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Gail
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Posted: Tue Nov 17th, 2009 03:39 |
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Holy Cow!! I didn't even think of the 25,D!! I just had the blood drawn last Wed. I am waiting to hear from the doc any day now. And yes, as a matter of fact I have been getting more exposure to the sun than typical. I just didn't realize it until now. Maybe the extreme stress is making things worse too. I did read your links, but I will again.
I am sorry to have wasted your time. I will calm down now and see how it goes with the suggestions you made. Thanks for your patience and understanding. And thanks for your cruel-kind remark. I needed to hear that as well. 
Gail
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Sarc/lungs, uveitis, hypothyroid, palps; 25D=4/125D=30(10/06),25D=14(10/07),25D=8(6/2/08),25D=6(1/09),25D=6(11/09),25=6.5(5/10); Ph1=9/07, ModPh2=11/07, Ph2=3/08, Ph3=1/09; Beni only, Synthroid 0.88, Allegra 1qday, Prilosec 1qday, Lotemax 1-2 drops qday
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Joyful
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Posted: Wed Nov 18th, 2009 05:49 |
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Gail,
Considering that high IP is the most likely cause of your dizziness, etc. ... a good next step would be to try to lower the IP. If frequent minocycline has worked for you in the past it would be reasonable to try to stop/slow the immune response by taking something like 50mg every 24 hours for a while to see what your response is.
Stress always makes everything worse.
Sunlight doesn't help.
Time to step back, regroup, and get back to tolerable before you make any other decisions. At this point even if you pay out of pocket for the Benicar, it may save you much, much more money in lost wages if you did poorly without it.
Sometimes you can get a prescription filled for a larger supply. Maybe you can get enough to stock up?
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Gail
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Posted: Thu Nov 19th, 2009 15:39 |
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Thanks Joyful! I will consider your suggestions. After reading Dr. Marshall's post I dropped the Mino back to 50mg q24hrs, started drinking more water and eating salty things. It seems to have raised the diastolic number just a bit.
Because I have been at such a HIGH weight for so long and trying to avoid hypertension, I have become accustomed to not coking with or eating salt unless I had some kind of craving. Now that I have lost 115 lbs, I guess I need to adjust that some.
I still have not heard from my doctor on the blood test results, but will post as soon as I do.
Gail
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Sarc/lungs, uveitis, hypothyroid, palps; 25D=4/125D=30(10/06),25D=14(10/07),25D=8(6/2/08),25D=6(1/09),25D=6(11/09),25=6.5(5/10); Ph1=9/07, ModPh2=11/07, Ph2=3/08, Ph3=1/09; Beni only, Synthroid 0.88, Allegra 1qday, Prilosec 1qday, Lotemax 1-2 drops qday
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Gail
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Posted: Fri Nov 20th, 2009 22:31 |
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Here are my blood test results:
Vit 25,D=6
LDL=188 (<130 norm, 131-159 Borderline high, 160-189 high, >190 very high)
HDL=39 (<35 low, 36-39 Borderline low, 40-59 Normal)
Total Cholesterol=257 (<200 normal, 200-239 Borderline, >240 High)
Triglycerides=140 (66-139 borderline low, 140-149 normal, 150-199 borderline high, >200 very high)
TSH=2.32 ( 0.2-3 normal)
T3=284 (80-220 normal)
T4=1.01 (4.5-12.5 normal)
As you can see, my Cholesterol and my Thyroid or riding high. My cholesterol is the one that really concerns me. My numbers have gone up to what they were a over a year and a half ago. I know that Cholesterol can fluctuate on the protocol, but even though I have lost over 115 lbs it is still high. Should I be concerned about this? My doctor wants to put me on meds for it.
Gail
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Sarc/lungs, uveitis, hypothyroid, palps; 25D=4/125D=30(10/06),25D=14(10/07),25D=8(6/2/08),25D=6(1/09),25D=6(11/09),25=6.5(5/10); Ph1=9/07, ModPh2=11/07, Ph2=3/08, Ph3=1/09; Beni only, Synthroid 0.88, Allegra 1qday, Prilosec 1qday, Lotemax 1-2 drops qday
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JoshR
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Posted: Sun Nov 22nd, 2009 06:33 |
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| Statins are contraindicated on the MP: Non-MP treatments
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5/6 CFS criteria, 125D36 Ph1Jul08 Ph2Sep08 Ph3Feb09 25D8(Sep08) NoIRs covered up (except hands) low lux home minimal light exp r/t work
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Joyful
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Posted: Mon Nov 23rd, 2009 06:37 |
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HI Gail. 
Cholesterol is really important in your body. I think it's the thing all of our hormones are built from, for example.
I did some research on high cholesterol before and found out that people with higher cholesterol had better outcomes (lived) when challenged by an acute infection. Also, older women with high cholesterol lived longer.
Taking a drug to lower cholesterol seems to me to be tinkering with what your body 'wants' to do with those levels while you are dealing with a disease state.
Check it out for yourself. Maybe you could do a search on the key words: "cholesterol myth" with an online search tool and see what you come up with. I think bacteriality.com has an article too.
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Gail
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Posted: Thu Dec 3rd, 2009 03:41 |
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That was very interesting about the Cholesterol, Joyful.
I have another question...my doctor wants to put me on an antidepressant because of the sever stress I am going through. I have read up about the depressants under the ABC's, but I am not convinced about some of the info.
Is Prozac OK to take? What about anything else?
Gail
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Sarc/lungs, uveitis, hypothyroid, palps; 25D=4/125D=30(10/06),25D=14(10/07),25D=8(6/2/08),25D=6(1/09),25D=6(11/09),25=6.5(5/10); Ph1=9/07, ModPh2=11/07, Ph2=3/08, Ph3=1/09; Beni only, Synthroid 0.88, Allegra 1qday, Prilosec 1qday, Lotemax 1-2 drops qday
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Joyful
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Posted: Thu Dec 3rd, 2009 06:12 |
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You have probably already seen the entry in this table:
http://mpkb.org/doku.php/home:othertreatments#medications
Here are some links to the legacy FAQs that may also be helpful:
How can I control my anxiety and depression?
It is important to wean slowly from antidepressants
How does stress affect Th1 inflammation?
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Alejandro
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Posted: Thu Dec 3rd, 2009 07:08 |
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if you are concerned about Cholesterol, I would recommend to read this
http://www.ravnskov.nu/cholesterol.htm
and eventually buy the mentioned book. It may open your eyes (;-)
Regards,
Alex
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Skin Sarcoidosis treated with Corticoid creme 1,25 D3 : 41 pg/ml (was 63) 25 D : 10 ng/ml (was 22)
In MP since Dec 2009
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