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thepantheist
Member in Phase 3
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Posted: Thu Apr 30th, 2009 21:34 |
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BEGINNING
Hi folks, my name is Bill Miller, AKA The Pantheist. Most of my career, has centered around health care, from hospital personnel director, to a hospital consulting firm, to the southeastern claims rep for Medicare Part A and Champus for Mutual of Omaha (yes I did meet Marlin Perkins), then claims investigator for their health and disability lines and finally for the last 20 years as claims as a Medicaid Criminal Fraud Investigator for the State of Georgia. Even with that background, I was totally unprepared in January 2002 when I came down with what I thought was a normal case of flue, except I never recovered. The symptoms reminded me of the mononucleosis in college that caused me to miss a semester and a later bout with what was diagnosed as a “middle ear infection” in the 70’s that left me sleeping 18-20 hours per day and unable to work for about 6 months.
After the rounds of a large portion of the doctors in Atlanta and ruling out basically every other disease known to man, I headed down to the Mayo Clinic in Jacksonville, hoping to find out for sure. Research on the Internet had indicated CFS or Fibromylgia and it was confirmed there along with the statement that they had no treatment for it. (Could have saved a lot of time and money, if they mentioned that first). After trying to work with the condition for a year and progressively getting worse, I went on sick leave and saved vacation time for the next year then took an early retirement, as the State refused disability, stating I was just depressed. Meanwhile I looked for possible cures, including a laundry list of various supplements and the St Amand Protocol based on the drug Guafenensin. While that did seem to relieve some of the stiffness in the ankles and wrist it didn’t seem to address the fatigue to any noticeable degree. I read about the Marshall Protocol, which seemed very interesting but kind of forgot about it since I was involved in getting my Social Security Disability and suffering from pretty bad brain fog.
Suddenly, I was seeing articles all over the place stating that all kinds of people were showing up short on Vitamin D and required supplements and I recalled the Marshall Protocol, which would account for that, but had a far different treatment plan.
LEAP OF FAITH
I contacted the folks at MP and found a doctor in the Atlanta area, starting the protocol, 7/14/07. It made sense for several reasons, suddenly people with a wide variety of conditions were showing up low on Vitamin D and the hundreds of disabled people I had visited during my career had much more in common, regardless of diagnosis than differences. A common complaint was that they had good days and bad days, and that fit my current problem exactly. Also, looking back at the times I had had similar experiences in my life, they were times of stress. The single fact that had stood out to me in a lifetime around healthcare was that illness, hospitalizations, etc had a .99 relationship with stress in a persons life. But, keeping records of activity, effects of the dozens of supplements tried and diet, I could find no explanation for the difference between the good and bad days. Bacterial die-off seemed to explain it best. So, I jumped in with both feet, determined that I would give it my best shot, even though I understood it might make me feel worse at times.
SYNCHRONIZED SUFFERING
And it did make me feel worse at times. However, the good and bad days were now like clockwork, depending on the days of the medicine cycle. Hard to explain how encouraged that made me feel, as being and investigator most of my life, my mind just isn’t comfortable with the unexplained. The incredible folks that donate their time so generously and act as monitors were always right on the money with what to expect and able to explain problems as they came up. Plus, even in the early days I had what I call “Golden Hours” when I felt “great”, something I had almost forgotten. I found it particularly helpful when going through some bad times to read some of the success stories of others. It really helped me and gave a sense of belonging to a truly miraculous event in the field of medicine.
ROLLER COASTER RIDE OF YOUR LIFE
To those who are considering MP, expect a unique experience, as the ups and downs are more than just physical. Your mental condition too, is going to vary greatly. They had asked me to summarize my first year on MP. As you may note, its more like a year and a half, but its taken that much time for me to get a perspective. Depending on the day, it was the best thing that ever happened to me or reminded me of the old country song “Some times the Pleasure, ain’t worth the Pain”.
OBJECTIVELY
I am not cured of Chronic Fatigue/Fibromyalgia, (not sure really what the difference is). But I have seen plenty of encouraging signs that I’m heading in a positive direction. The main thing is better cognitive abilities. Not much of a writer, but this would have been impossible for me earlier. There are still days when I'm pretty fuzzy, usually during times of stress, but I can now handle our home accounts and pay bills reliably and can read much longer without forgetting. My skin has improved greatly with more color instead of a kind of gray pallor, I noticed on my last prostate exam that it had surprisingly shrunk noticeably. I’ve had two improvements in vision, the first requiring less correction for distance and the second a few months ago, no longer requiring trifocals, but bifocals. By sticking pretty religiously to a low carb diet my weight has dropped from a high of 246 to my current 215. I’ve been able to accomplish many of the things I’ve put off in the last 6 years, including remodeling the house, building a cabinet, working on cars and catching up a great deal on our rather large yard which had gotten way out of hand. I can’t do things every day, but on my good days, can accomplish quite a bit. I pace myself so I don’t overdo it too much. (a hard lesson) Even when I forget and overdo it, the payback – a feeling of total exhaustion- is much shorter these days. The best part is having some control over my life as I try to plan trips or activities during the better parts of the cycle. I read on Dr. Blaney’s site that CFS/Fibro seems to take longer than other types of disabilities so patience is required. Hoping for many more gains in the coming months.
ADVICE
I’ve yet to see an alternative treatment and am encouraged by those with CFS/Fibro who have totally regained their lives with MP. I would encourage those with the same problems to jump in with both feet, read as much as you are able of the web sites and don’t lose faith when you hit a few rough patches. I am determined to get over this disease, and would recommend it to any people who are also “stubborn”. The worst days you experience are no worse than the “bad days” you had before, but over time, there is a distinctive improvement in attitude and health and more “good days”. Luckily, my Vitamin D level dropped relatively quickly and while I’d had some light sensitivity, the Noirs worked well and the sensitivity has lessened over time. I’ve always loved hats, so wearing a wide brim has been a joy and I seem to handle the sun all right, though limited and with long sleeves and pants. There are new lines of sun protective clothing available that look pretty cool and are comfortable, especially from Australia. Best of luck with your “journey to regaining your health”.
The Pantheist
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CFS 125D42 MP 7/07 Valium, hydrocodone quaifenisin aleve NoIRs, limited outings covered modph2 9/07 Ph2 12/07 25D 7 (1/08)Stage 3 6/08
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Joyful
Board Staff
| Joined: | Sat Jun 9th, 2007 |
| Location: | Restville, Again |
| Posts: | 1709 |
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Offline
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Posted: Fri May 1st, 2009 05:55 |
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Thank you - Bill Miller, AKA The Pantheist - for sharing your perspective and experience here!
I've been in what could be called a 'rough patch' here for a while and I needed to read something like what you wrote. I needed to have somebody take the time to sit down and put in writing a huge reminder to persevere.
Your successes outweigh your setbacks and you are regaining ground you never planned to lose in the first place. Good for you.
Thanks so much!
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Lyme?1980 Lyme/Babs/Bart?05 CFS?06 | Start 125D(50) 25D(32) Jun07 | Ph1Jul07 ModPh2Sep07 Ph2Feb08 Ph3Aug08 | Latest 25D(9) Apr09 | ABC of MP
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kenc
Member in Phase 3
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Posted: Sun May 3rd, 2009 03:03 |
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The Pantheist,
Wow! I was looking for something on remodeling of scar tissue by entering the word "remodeling" and I run into your jewel of a story. Very interesting.
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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Aunt Diana
Moderator
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Posted: Sun May 3rd, 2009 07:12 |
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Thank you for your autobiography, Bill. I am in my third year + 1/3 and have started backing off of abx. I was sick for a long time (18 years) and lately I am starting to feel like I did before I became sick.
This treatment is not a miracle but it may as well be. I went through Hell and back again for two years while I was on the MP but I would do it again.
Trevor Marshall has figured out why we get sick and what to do about it.
Hallelujah!!!
I am enjoying life again.
It is frustrating to see the "glassy eyed" look in my friends eyes when I try to tell them about this miracle.
New discoveries take time to get acceptance, I guess. I'm just glad that I didn't wait.
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Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, hydrocodone, lorazapam, benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux. Feb 08 Phase 3. 6/08 D <4, D1,25
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