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roo
Member in Phase 3
| Joined: | Wed Feb 9th, 2005 |
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| Posts: | 25 |
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Posted: Tue Jan 31st, 2006 11:11 |
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Three years ago I was in Disneyworld with my family. I was on amoxycillin (dr. thought I had pneumonia), out in the sun all day - then wham! We were back in the hotel room and I started to shake cause I couldn't get warm. My husband put all the bedding in the room on me and I still couldn't stop shaking. He is in the medical profession so knows some things (he's not reading this!). When we got home they took xray and after lung biopsy got confirmed Sarc diagnosis. Went to pulmonologist who immediately put me on steroids. Was having HUGE mood swings with steroids - was getting no response from drs office.
Next, we were in Hawaii on vacation. But this time I had my computer. I started to research. Thats when I found SarcInfo and Trevor Marshall. I read this site the entire week. I talked nonstop with my husband about TH1 disease and had to convince him first. When we returned home, we scheduled an appt with top sarc specialist. He agreed that steroids were not good - and offered me methotrexate. By this time, I was convinced that I was going off steroids and that there was no way I was doing methotrexate (way too many side affects with no cure in sight). We approached my general practice doc well prepared with documentation (I sent him info ahead of time along with letter explaining our planned visit). Because he knows us well, he agreed to do the MP. Which leads me to today........
I am in Phase 3 - been on MP for 2-1/2 years. What a difference that time has made. I am SO much better. I continue to work on the antibiotic combinations in Phase 3. I still take Benicar 3x day - the difference I have noted is that I used to really feel bad about the time I would need to take Benicar. Now I can miss hours and not notice it. I still cover up but can be out in sun for daughters track meets and still feel ok. Planning on doing D metabolite tests after I complete antibiotic regimen in Phase 3.
I can't thank Trevor enough for his protocol and his generosity in sharing it with all of us. This time next year I hope to be totally cured. I truly believe that this is the only treatment available that offers a cure. My advice to any that are thinking about following this protocol and having difficulties finding doc - don't give up. You will find someone to help.
Peggy
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dx: lung sarcoid by biopsy 5/03 125D-97;25D-33. 9/2003 125D-57; 25D-19. 25D-less than 7 6/07. Benicar 3xday.
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GeorgeinRollaMO
Advocate
| Joined: | Tue Aug 10th, 2004 |
| Location: | Rolla, Missouri USA |
| Posts: | 476 |
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Posted: Mon Feb 6th, 2006 22:40 |
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Thanks, Peggy,
For giving a nice Phase III report that all can read. It is good to hear from folks down the LONG ROAD.  I wish that more would do so, in the general area so more can read it. The Alumni section could sure use more.
May the good result continue for you!
Dark Vader (aka, George)
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Borreliosis:7/14/04--125D=57,25D=61. Ben 9/1/04. Mino 10/5/04. 4/13/05--125D=58,25D=43. 8/17/05--125D=52,25D=36. April 06=125D=38,25D=29. 8/29/06--125D=37,25D=29. June 07 25D=23. Oct31'07,25D=19.
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Reenie
inactive member
| Joined: | Wed Jul 21st, 2004 |
| Location: | Phoenix, Arizona USA |
| Posts: | 3373 |
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Posted: Tue Feb 7th, 2006 03:05 |
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Peggy,
I second what George said. 
Thanks for sharing how long it took you, where you are today and how much longer you think it will take.
IMO, this is GOOD info for all of us to read! 
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Ebeth
Member in Phase 3
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Posted: Sat Apr 8th, 2006 15:24 |
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| I, too, thank you for your post, Peggy. I have only been on the MP for 2 months now, and it is helpful to read someone else's story of encouragement. Some days are so difficult, and I start to wonder if I will ever feel well. I appreciate you sharing your story. ~Elizabeth
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Sarcoidosis/liver hypothyroid 125D49 Ph1Feb06 Ph2Jun06 Ph3Jan07 break Jul-Oct07 surg Mino only Feb-Jun08 2nd surg Ph2Aug08 Armour thyroid 25D5(7/08)
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kelly well
Health Professional
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Posted: Fri May 2nd, 2008 21:27 |
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| Great post for me and will help my hubby and family to understand my sarc and MP. ThaNK YOU, kELLY WELL
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Sarcoidosis bronchiectisis atrial septal defect atrial fib hypothyroid dysphagia CHF gout COPD skin lesions 125D66 25D52 Ph1 Feb08 ToprolXL estradiol Synthroid Seroquil lortab valium protonix lasix prn 25D34 (May08),Ph 2 7/08 25D29(7/08)
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roo
Member in Phase 3
| Joined: | Wed Feb 9th, 2005 |
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| Posts: | 25 |
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Posted: Fri May 2nd, 2008 21:48 |
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I have been on MP for over five years. My last D test was under 7. I'm feeling good, cough is gone. I have no noticeable herx. All my blood work has come back normal. Only symptom are three small sarc lesions on my face that are slowly resolving. I have not gone to dermatologist for treatment of them. They are slowly resolving. totally see the light at the end of the tunnel.
Thanks much for all you do.
Roo
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dx: lung sarcoid by biopsy 5/03 125D-97;25D-33. 9/2003 125D-57; 25D-19. 25D-less than 7 6/07. Benicar 3xday.
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Kas
Member in Phase 2
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Posted: Fri May 2nd, 2008 22:24 |
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Thank you, Roo, for such a wonderfully encouraging post. You have given hope of a return to health to many folk who may often wonder if they are ever going to get well again.
I am a very slow MP-er. I have stopped and started over the past four years, but have been on it again for almost a full year, at a slower than is usual pace for most. However, even at my snail's pace and with lots of kidney and liver IP, I still feel I am making progress. The fact that I am able to work and lead a full life, is testament to the fact, that despite all of my ups and downs, the MP is working for me at some level.
Once I realised that this is not a race to get to the finishing line, and that I could spread my dosages out/ lessen the drugs/ take benicar every four hours during the day etc, I started winning my battle. That, together with the fact, that my once skeptical doctor has seen patterns evolving and has stopped wanting to pull me off the MP each time bloodwork is askew ( and it mostly is, showing me that I am responding), has allowed me to relax and plod along at my very own pace for as long as I need to. I may well land up being on the MP for a decade, but I do not mind- if that is what it takes to reclaim my health, that is what I have to do. It is sure better than being on toxic, immunosuppressive drugs for years and years, which would only see my decline, anyway.
On the MP, I have learned to pace myself. As time has gone on, I have learned to lead a full life on it, mostly within its parameters. I am now able to tolerate more light, especially indoors. I can be out a bit more in daylight if I use my zinc oxide cream, wear my large hat and my Noirs and am never more than four hours away from my friend, Benicar. I can travel now, without taking blackout window coverings along, I can fly long distance, I can put in a full day's work, come home, take a power nap and carry on having fun at night! My family has adapted well to my needs and they have become a way of life. My students wear dark glasses in my fluourescent - lit classes to make me feel more comfortable and they have forgotten what I look like without them! I have a blind over my skylight in the house and dimmer switches in most of my rooms.
I still avoid Vit D foods quite astutely, only occasionally having a little sneak in. I ate fish once a week on a recent trip, and it seemed to give me way too much in the way of IP's, so I have cut it right out again. I read all my labels carefully and have no added D that I know of.My 25D readings are so low, they cannot be read! My 1,25 D is below normal range, my bone density test last year was in the normal range.
Yes, I have lousy days on very little of the MP abx, which proves to me how responsive I am. I suffer yeast infections - but less intense than when I first started and they are far more manageable when I do deal with them. I expect them to vanish when I am cured. I deal with all sorts of aches and pains, which come and go and I hardly ever take a pain killer. My bowels play up, but they always seem to settle down again. In fact, I can honestly say, that other than my MP drugs, my doctor has hardly written me a script for anything else.
Pre MP, I suffered the most awful sinus infections. I was always on antibiotics and they always recurred. Since being on the MP, I have not had one. I used to get colds from my students, this winter I declined the flu shot ( was always told to have it - especially after I lost my spleen five years ago to get my sarc diagnosis), I flew overseas for over 20 hours each way and taught in an old and poorly ventilated building, filled with over 1,500 kids full of viruses, and I got through a cold winter without a day off for illness. That in itself, is a major victory for me and one my doctor still finds incredible! Clearly, my immune system, is functioning again, despite only having a tiny accessory spleen.
I have learned to tell doctors who tell me that the MP will kill me and that I need to be on predisone, that I do with my body what I please and that if they do not want me as a patient, I am happy to bid them farewell. I decline all biopsies - losing my spleen unnecessarily was enough - and I want no further invasive and potentially dangerous procedures which are not going to change my choice of treatment, anyway. I have also told my lung specialist to stop over- radiating me with CT scans annually and will only have one after two years has passed. Learning to talk up for myself was difficult initially, but I have come a long way and it has been really empowering in all aspects of my life.
So, to Dr Marshall, the ever -patient, knowledgeable and kind moderators and all those in the MP 'family' who keep in touch and advise and encourage me as I plod along, my heartfelt thanks and gratitude. To my over and ever -caring doctor, my eternal gratitude for having the courage to monitor your one and only MP patient, despite the many, many times you felt scared and worried and thought you could no longer do so. It takes guts to see a patient come in with BP of 60/40, declining kidney function, when it was fine pre the MP and liver enzymes all over the place, and still allow her to continue, when you are having sleepless nights worrying about the patient.
I may be a late bloomer, but I am a determined one, and I know I will come out a winner, even if I am a lot older and healthier when I do!!
Hang in there everyone and do whatever you have to, to remain an MP'er.
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Sarc Dx by splenectomy 03- Lungs, lymph nodes, liver. Non MP meds: natural progesterone cream three weeks a month; cal/mag; probiotics; milk thistle daily; cranberry caps prn; quercetin prn.Noirs outdoors and under flourescent work lights, Spectra 3 cream
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Aunt Diana
Advocate
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Posted: Fri May 2nd, 2008 22:37 |
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I have been on the MP a little more than 2.25 years now....this is the first time I've posted on the alumni forum.
I came down with Lyme Disease about 20 years ago. I had been on amoxycillin and various other oral antibiotics pretty steadily for 17+ years. I would reach a point where I felt 75-80 percent back to normal and would try to stop the abx. Each time I did that, I wouid quickly relapse and start to feel awful again. I had both neuro and the arthritic symptoms....they were all horrible. But of all of them I believe the neuro was the worst.....at times I would have such severe vertigo that I would be thrown to floor and have to stay there until the vertigo wouild stop. It was impossible to stand up or move without making it worse...once this happened to me in a public park. I'm sure people thought I was drunk....two kind men realized what was happening and carried me to my car in a parking garage a few blocks away. The vertigo was so severe that I couild not make out their faces....it was like being inside of a kaleidoscope and my eyes could not focus. So I will never know who those men were. I was fortunate that I was able to talk and tell them where I had parked.
Well, I think that gives you some idea of the severity of my symptoms....the arthritis was debilitating in its own right....by the time I was in my early 50s I was barely able to touch the ground....my flexiblitly kept getting worse until I couldn't put on a pair of socks. I was also taking Advil as if they were "tic tacs:. I would define my days as a "4 Advil day" or and 8 Advil Day, etc.
In 1984 I had started my own business in Boston and much to everyones surprise it became a great success fairly quickly. (I am so thankful for that...because by the time I was really sick, about 4 years later, the business had gained enough momentum that it was able to carry on without my leadership. If it had not been for that business, I don't know what I would have done because there was no way I could hold a job. I finally had to admit I couildn't do it anymore in 2004....that was when I closed the business.
Soon after that in Sept. of 2005 I discovered the MP and started it as soon as I could get all my ducks in a row.
Today....I absolutely cannot believe how wonderful I feel. I thought I would never feel this way again. (Actually, I had forgotten how it felt to feel good)
Interestingly, this has sort of snuck up on me. The first two years were very difficult....there were times I wasn't sure I was going to make it. My IPs were very severe....there were many times I would go for a week without beiing able to bathe or even wash. (Something unfathomable to a neatnik like me) Just to emphasize how severe these were...I could hardly make it to the bathroom....sometimes I did not. I don't want to kid you....it is very difficult to learn how to control the IPs.
But during the past two or three months the IP's have become very tolerable and I have been getting stronger. My good periods have been lasting longer and longer...this most recent 10 day cycle I felt good every day (a first). Then this week, I have been able to do things my brain thought it would never do again....I have been multi tasking, organizing and focussing in a way I had forgotten was possible.
I am simply so thrilled to report these new (or renewed) abilities that I want to "shout it from the rooftops".
I hope this gives you the encouragement to keep going....there were times it felt like this was endless and was going to be my life forever....but here I am. on my way back to my old self.
Thank you from the bottom of my heart to Dr. Marshall, Meg Mangin, Aussie Barb, JR Foutin, Julia, PB, Vez and all of the people on the website who have been so helpful and supportive. It's only a matter of time that you will get the recognition that you so deserve.
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Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, Oxycodone, lorazapam, benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux. Feb 08 Phase 3. 6/08 D <4, D1,25 21
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roo
Member in Phase 3
| Joined: | Wed Feb 9th, 2005 |
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| Posts: | 25 |
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Posted: Fri May 2nd, 2008 23:03 |
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Kas
Thank you for your response. Sounds like you have a good handle on your disease and a great doctor. That has been so helpful to me. Hang in there.
Peggy
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dx: lung sarcoid by biopsy 5/03 125D-97;25D-33. 9/2003 125D-57; 25D-19. 25D-less than 7 6/07. Benicar 3xday.
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JGP
Member in Phase 3
| Joined: | Sat Oct 21st, 2006 |
| Location: | Arizona USA |
| Posts: | 17 |
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Posted: Sun May 18th, 2008 15:18 |
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Thanks for posting your progress Peggy. It is very encouraging that someone is reporting seeing the light at the end of the tunnel and implying that an end to treatment is in sight. 
I too suffer from Sarcoid of the lungs. I have been on the MP for approximately 485 days and have been taking max dosage of Phase 3 medications for about 250 days; Soon to rotate new antibiotics into the mix.
May I ask, at what point during treatment, years and antibiotics levels used, did you achieve resolution of your cough?
I have experienced mild relief from the cough since that start of the Benicar in Phase 1, but no improvement since that time.
Thanks again for posting.
JGP
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Sarcoidosis 125D44 25D16 Ph1Jan07 Ph3Sep07 25D11(Mar07) NoIRs
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roo
Member in Phase 3
| Joined: | Wed Feb 9th, 2005 |
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Posted: Sun May 18th, 2008 19:38 |
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Hi
My cough went away after being on a short treatment of prednisone and did not come back until what I call Stage 5 this fall. It lasted maybe six months and the cough is gone. Sometimes my cough was exacerbated by sinus drainage which seemed to be constant at this time. So I can't give you time frame which I know is frustrating. It seems that the MP is very individualistic due to our bacterial load. I do believe that your cough will get better as long as you remain diligent on the MP. How are your D tests? Are you able to keep those within acceptable norms?
Peggy
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dx: lung sarcoid by biopsy 5/03 125D-97;25D-33. 9/2003 125D-57; 25D-19. 25D-less than 7 6/07. Benicar 3xday.
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JGP
Member in Phase 3
| Joined: | Sat Oct 21st, 2006 |
| Location: | Arizona USA |
| Posts: | 17 |
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Posted: Sun May 18th, 2008 20:51 |
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Thanks for the quick reply Peggy.
My 25-D tests have been at 11 for the past year. I too had a very short treatment of prednisone prior to starting the MP and it helped relieve the cough, but only for the short 2 week period that I was on it. After the prednisone was stopped the cough came right back and has been with me ever since early 2003.
Thanks again.
JGP
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Sarcoidosis 125D44 25D16 Ph1Jan07 Ph3Sep07 25D11(Mar07) NoIRs
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