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debbie y
Member in Phase 3
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Posted: Mon Oct 30th, 2006 01:28 |
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As I finish up ph 2 and get ready to commence to ph 3, I have reflected back on the first 2 phases. Phase 2 has been different from phase 1. Very minimal discomfort really, some joint pains, some new "irritating" things like itchy eyes, some diarrhea, indigestion, malaise, a red spot under my nose (not a sore or anything), stiff neck, some "blue" moods, irritability at times and more fatigue. My light sensitivity has diminished alot and I don't have to wear my sunglasses in the house except for the computer.
My D numbers remain very good, my ACE is normal, glucoses are very good, my insomnia is much improved and I have color back in my cheeks. I can go out some even tho I tire but at least I can go places with my family where before ph 1, I didn't have the energy to go from the kitchen chair to the couch without being winded and I couldn't go upstairs. Now I can go and down about 3 times before tiring. The other remarkable improvement is in my hands. Since I was in my 20's, both my palms have been extremely reddened, including my fingers. I do not have Raynaud's. But, since being on the MP, the redness is leaving and there are parts of my palm that are now normal skin color.
So, I encourage all of you that are starting or finishing ph 1 to make a committment to yourself that you are going to give this your best. I can absolutely say that I have had more good days than bad since I started the MP. It has been worth everything. When I came off of my steroids and the sarcoid rash began appearing, I knew that I needed to do something different. And, I have worked at this. I have educated myself AMAP and have asked questions. And, I have followed the protocol to the "T". You have to, you have to follow the process and be committed and be patient. And, you have all this wonderful support all around you via this website. Life is not a bed of roses, but my life has been so much better on the MP. Keep progressing everyone and see you in ph 2 & 3. You will be rewarded for all of your hard work!
Your friend,
debbie y
I do know that my diabetes became much worse on the predisone and for quite a long time when off of it. I have reported a huge improvement in my blood sugars and control since on the MP. And, when you have normal blood sugars, the less the complications.
Dec 06:
At one point in MP I had 2 sarc lesions appear. They crusted up and turned brown in no time. Before MP, they would have remained. Only new things in ph 3 so far - my eyes are really dry and irritated, clearing my nose alot, but all is clean. Still tired but do have windows of energy. Blood sugars good again, more lows. And, definately more fogginess, not as quick mentally as I was. I have also had 2 minor nosebleeds, from the same side of my nose which was a mess in the past. Usually by this time of year, I would have already had several infections, nosebleeds which needed cautery, etc. This time, no dryness in my nares at all and the nosebleeds were very, very light.
Two last observations, I still have not regained my sense of smell and my appetite has decreased and my hair which is naturally curly is now flat and almost straight. The good thing is my skin on my face is like a baby's face, very, very soft.
thanks, and may everyone have a wonderful holiday season with those you love - 2007 is going to be even healthier for all of us MP'ers!
debbie y
see also:
DebbieY 44 years of Diabetes
Debbie Y: My life is important to me and I want to live to be an old woman
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Sarcoidosis/lungs '04' DM type 1 celiac sprue Insulin via pump synthroid,lunesta Ph1Feb06 Ph2Jun06 Ph3Dec06, 25d 7.1, 1,25 22.9 on 2/23/09
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debbie y
Member in Phase 3
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Posted: Wed Feb 28th, 2007 20:56 |
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Just checking in, it has been awhile since posting. I am doing pretty well, taking it very slow.
My eye flashes have stopped, my eyes checked out fine. And, the tinnnitus which I was so concerned with has just about faded away. Once in awhile it'll increase but, it is very tolerable now. Mild herxing continues like back ache, leg ache, irritability and arm and shoulder ache but all very tolerable.
I have had very good energy and have been able to do more things, however, my endurance is still not very long. I would like to ask doc if I can begin a low dose of exercise. Blood sugars good, BP good, eating alot more, still sleeping 10 hrs. No bowel or stomach problems, no sarc break outs for now.
Thank you!
debbie y
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Sarcoidosis/lungs '04' DM type 1 celiac sprue Insulin via pump synthroid,lunesta Ph1Feb06 Ph2Jun06 Ph3Dec06, 25d 7.1, 1,25 22.9 on 2/23/09
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debbie y
Member in Phase 3
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Posted: Thu May 17th, 2007 21:55 |
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celiac sprue
I have been dx'd with celiac sprue since 1997 but had it longer than that. I stay on a strict GF diet always and the only reactions I get is accidentally eating gluten and that is very rare.
I have noticed tho, that since on MP - over a year and 1/2 now, there was an accidental ingestion of gluten and I did not have the old type of reaction that I used to have. It was MUCH milder and shorter, so I am very interested to see what long term effect MP will have on the celiac disease. Same goes with my diabetes.
Also, today at my dr. visit, my PFT's and CXR are good. He told me that was amazing because pts with sarcoidosis only continue to worsen and after being on the MP, my lungs are holding!!! I am in ph 3 folks and it has been so worth it.
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Sarcoidosis/lungs '04' DM type 1 celiac sprue Insulin via pump synthroid,lunesta Ph1Feb06 Ph2Jun06 Ph3Dec06, 25d 7.1, 1,25 22.9 on 2/23/09
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debbie y
Member in Phase 3
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Posted: Thu Sep 13th, 2007 22:09 |
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I am a type 1 diabetic on MP, on an insulin pump. I have had dm for 46 years.
Since being on MP, I have not experienced any negative issues with my diabetes.
In fact, my A1C has improved, my eyes show no signs of retinopathy and I am checked every 6 months - she even took photos of my retinas they were so perfect!
No kidney, feet or neuropathy problems either. My blood sugars do tend to drop down after I take one of the phase 3 antibiotics but I just readjust my basal rate.
I also recently had carotid studies that were normal and my bone density has improved. My thyroid control has improved as well, my dose has been decreased to 1/2 of what it was.
I would encourage you to continue your way on the MP. You can tell your doctors that I am also a registered nurse and have taught diabetes control many times and I have some experience about the diabetes. Good luck!!!
January 2008:
I have had exceptional energy for at least 3 or so weeks now, so much that I have pep, sparkle in my eyes, smiling and ENJOYING doing things. I feel like I have been given a booster shot.
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Sarcoidosis/lungs '04' DM type 1 celiac sprue Insulin via pump synthroid,lunesta Ph1Feb06 Ph2Jun06 Ph3Dec06, 25d 7.1, 1,25 22.9 on 2/23/09
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Dr Trevor Marshall
Research Team
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Posted: Fri Sep 14th, 2007 01:04 |
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Debbie,
As was sorting through the genes transcribed by the VDR I noticed that several of them were involved with retinal structure. I suspect the improvements in your eyes are not just due to reduced inflammation, but also increased transcription of these retinal structure proteins.
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debbie y
Member in Phase 3
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Posted: Mon Mar 17th, 2008 05:42 |
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I am in phase 3 and on an insulin pump and have had diabetes type 1 for 46 years.
-My blood sugar levels have consistently dropped on the day I take my phase 2 abx and for a few days after.
Several things have changed since being on the MP:
-I can feel my hypoglycemia more now where before MP I could not feel any signs of hypoglycemia due to longstanding diabetes.
- at times I have had unexplained high glucose levels for no reason other than an IP event and taking extra Benicar straightened it out.
-my A1C has lowered to normal when it had not been for awhile.
-I have had no diabetic problems with my eyes since on antibiotics and Benicar, -I have had no diabetic problems with infections and or healing.
Taking the antibiotics and Benicar, along with the proper diabetic diet, checking glucose levels regularly and recording them and having regular A1C levels checked, have helped my diabetes status and has allowed me to see the effects from the MP meds.
No new lesions, alert, stamina is great, no SOB, glucoses good.
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Sarcoidosis/lungs '04' DM type 1 celiac sprue Insulin via pump synthroid,lunesta Ph1Feb06 Ph2Jun06 Ph3Dec06, 25d 7.1, 1,25 22.9 on 2/23/09
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beeletcher
Member in Phase 2
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Posted: Thu Sep 11th, 2008 05:09 |
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Hi Debbie,
I can't believe there is someone out there with sarcoid, diabetes on a pump, Celiac's and thyroid issues! Look at my signature. I am just starting out, on 50mgs of mino. Thanks for sharing your progress, it gives me hope.
I changed my basal am'ts today as my blood sugars are rising because of my inactivity. I am trying to lower my carbos also. I just need to get my 25D lower now.
Good luck!
Brenda
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sarc1996;DM1;celiac;hypothyroid;osteopenia; may9/08:1,25D=54pg/ml,25D=38; Dec1:25D=26.Jan6:25D=32. May5:25D=26.Synthroid100;Noirs;lowlux apt; Ph1sept1/08,Ph2Oct2
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debbie y
Member in Phase 3
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Posted: Tue Sep 23rd, 2008 08:56 |
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mp meds - beni 40mgq8, phase 3
non mp meds - Darvocet N prn for scoliosis back pain
July-
sun - more exposure this summer but still w/glasses outside, hat, long sleeve, have been wearing capri pants and occas. sandals but only once in a while
dry areas on face have gone, itching of face gone, no new lesions, old lesions in some areas almost 90% faded. Cough this summer but goes away quickly, alert, no confusion, blood sugars on low side and trouble staying stable, I think it is a good sign. Adjusting basal rate down. Vit D test just done and is less than 7 still. Energy coming back, feel pretty darn good.
Sept-
sun - about 3-4 hrs per week in and out of house and car, don't wear gloves anymore but do wear long sleeves, socks and long pants, hat and glasses
continue to do well, no new lesions, last Ace normal 1st time in 4 yrs., glucoses good, old rashes faded almost 90%, some fatigue and sl SOB but good, very active in my life, still need to tell myself to slow down and rest, trigger finger acting up again but only 1, cruising and happy
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Sarcoidosis/lungs '04' DM type 1 celiac sprue Insulin via pump synthroid,lunesta Ph1Feb06 Ph2Jun06 Ph3Dec06, 25d 7.1, 1,25 22.9 on 2/23/09
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debbie y
Member in Phase 3
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Posted: Thu Nov 20th, 2008 15:43 |
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mp meds - Beni 40mgq8, phase 3 meds
nonmp meds - same as in sig line
sun and sxs - still wear glasses, long sleeves and pants, do not cover hands anymore, don't wear hat all the time,still stay out of sun AMAP, not wearing glasses inside anymore.
ACE level normal @ 22, 2nd normal reading since 2004. Last reading 3 months ago was 40 which was a first for me. Vit d tests to be repeated next visit.
Doing well, lots of energy, stamina good, no sinus issues or nose problems. Don't know if I'm herxing anymore or not, if I am, I don't recognize it. Have been on this antibx combo a very long time, almost a year.
Having NO health problems - IT'S WONDERFUL, even worked the polls for the election and did great. Will await a reply.
many thanks, debbie y
There were 4 other things I've noticed. I have been on Tenormin for 17 years, originally given to me for PVC's and palplitations, not for BP. Since lots of things are clearing up on MP, my dr. has decided to try and wean me off Tenormin and so far doing well.
Also, since on MP, I do not crave sweets anymore and things with sugar actually make me turn away. I'm not feeding bacteria anymore!
Seeing endocrinologist soon to help w/my diabetes because since on MP, my insulin requirements have dropped to 1/2.
Also, my thyroid which used to make me SO sick; never was on a stable dose, well, since on MP, no more problems w/thryoid and the dose was cut in half. We may try to decrease that dose further as well.
MP continues to amaze me and I am very interested to see what effect it will have on my type I DM in the long haul. I have almost 50 yrs. of diabetes and my retinal exam today was 100% clear. I'm not done yet!
debbie y
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Sarcoidosis/lungs '04' DM type 1 celiac sprue Insulin via pump synthroid,lunesta Ph1Feb06 Ph2Jun06 Ph3Dec06, 25d 7.1, 1,25 22.9 on 2/23/09
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Dr Trevor Marshall
Research Team
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Posted: Thu Nov 20th, 2008 19:15 |
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Seeing endocrinologist soon to help w/my diabetes
Endo will just pass it off as an anomaly. He/she will just assume that you were using too much insulin in the first place
Debbie, there is no doubt in my mind that Diabetes type 1 is a Th1 disease. Ever since I saw the time-lapse movie of monocytes arriving at the surface of a transplanted pancreas, accumulating in the peripheral pancreatic tissues, and knocking out the production of insulin (causing graft rejection), I knew that we were dealing with a Th1 disease. Your persistence and dedication has helped confirm that. You should be very proud of what you have achieved.
Now we have to work down that remaining 50%
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debbie y
Member in Phase 3
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Posted: Wed Dec 31st, 2008 02:54 |
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MP meds - Beni 40mg q8, Phase 3 meds
Non MP meds -
-Now off Tenormin completely after over 16 years and no palpitations.
-Getting an insulin sensor to alarm me via my pump when my glucoses go too low or too high
Sunlight - about 5 -8 hrs. per week
Symptoms: - I made a good decision about not stopping antibx, discovered a combo I had missed and since on new combo, had good strong herxes at first, ie, skin breakouts, fatigue, grumpy, diarrhea, extreme cervical pain for 2 weeks where I had a C5-C6 diskectomy years ago. All eventually cleared up. Having some more loss of color on face but not too bad. I keep going.
thanks, debbie y
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Sarcoidosis/lungs '04' DM type 1 celiac sprue Insulin via pump synthroid,lunesta Ph1Feb06 Ph2Jun06 Ph3Dec06, 25d 7.1, 1,25 22.9 on 2/23/09
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