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KFaucher
Member in Phase 3
| Joined: | Sun Aug 1st, 2004 |
| Location: | USA |
| Posts: | 214 |
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Posted: Sun Jan 28th, 2007 15:47 |
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Sorry for not posting here more often. It took me a while to figure out tolerable dosing on phase 3. I think I now have things figured out and can control the immunopatholgy pretty well. Although my two year anniversary was more than a month ago, I have been busy with other stuff. But here, finally is a two year update.
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I have now been on the Marshall Protocol (MP) for two years. Many symptoms have resolved, but listing them has proven difficult. I am not a note taker. I am disorganized and chaotic. That is something which has not changed with the MP. So, aside from my own memories, I have relied heavily on Dr. Greg Blaney’s presentation at the LAX conference.
I started this illness with the classic flu-like symptoms. Fatigue, weakness, brainfog, swollen lymph nodes. Through the 20 odd years since, many other symptoms have arisen. Some I recognized as being related to CFS, many I did not. At the time I discovered the MP my downward spiral was gaining speed. I was using ski poles for even short walks, and considering a cane for normal use. My physical and mental condition had deteriorated to the point where I could not keep working for much longer.
I am currently on phase 3 of the MP. By adjusting the levels of the 3 abx combo I can manage the immunopathology from not noticeable to debilitating. The last time I took a break from the abx was August. I had no noticeable symptoms, plenty of energy, and was regaining strength through increased activity.
The following is a list of symptoms and how the have, so far, resolved. In no particular order.
Fatigue/weakness – Incredibly improved. Immunopathology makes it difficult to objectify, but when on break it would appear to be completely resolved.
Brain fog – Same as above. Now only my worst immunopathology reaction is capable of turning me into a zombie. It is difficult to describe what it is like to have my mind back, so I am not even going to try.
Muscle/joint pain – Gone gone gone! Returns occasionally as immunopathology, but not often.
Chronic sinusitis, chronic bronchitis – Gone gone gone! I used to get one or the other 2-3 times a year. NOTHING since starting the MP.
Colds, flus, "bugs" etc. – I used to get these on a regular basis. Since the MP I have had one cold (lasted 8 days at only a low level) and one "bug". The "bug" was a GI infection that was never diagnosed, but appears to be a noro virus that is so popular lately.
Lower back pain – I have had this off and on since I was a teenager. Later it has been more on than off. It stopped within 3 days of starting on Benicar. It returns occasionally as temporary immunopathology.
Chest pain – this had become common in the last 10 years. EKG showed nothing, doctors seemed disinclined to look further. It is also gone. Reappears occasionally as immunopathology.
Swollen lymph nodes – common pre-MP symptom, various nodes involved. At the start of the MP, nodes behind knees and elbows were very swollen. This resolved after several months. No problems since.
Skin irregularities:
Red face – always looked drunk.
Oily skin – I had become a real grease ball.
Loss of elasticity on back of hands – Hands looked like I was 100.
Cigarette size areas of thin, easily ripped skin that were slow to heal
Red and oily have gone away. Skin on hands has returned to normal. The little cigarette sized "wounds" disappeared, but return often, in different locations. The new wounds heal in about 10 days, as opposed to 6-12 months previously.
Twitches – I would have small muscle twitches which would last hours-days. For the last year I had an eye twitch that was constant. Gone gone gone. Now barely a memory.
Jaw pain and "click" – Jaw pain would appear for a few days and then disappear. For the last two years I had developed a click in my jaw. It started on the left side on occasion. For the last year it was both sides all the time. Disappeared sometime in phase 1. Has not returned.
Difficulty swallowing – Food would get half way down and just stop. Each meal was a struggle to swallow before choking. Disappeared sometime in phase 1, has not returned.
Reflux like symptoms – Difficult to control, really bad at night. Prilosec was the only thing that could control it. – No change. Still cannot go more than two days without prilosec.
Tinnitus – Had it for years. It is still there, but varies quite a bit with immunopathology. There have been a few days of precious silence. There have been some days of near insanity level pitch and volume.
"Thick" blood – Always had a hard time drawing blood. I would have to continuously clench and relax fist to pump it out. The phlebs thought it was odd but the doctors never seemed interested. My first blood test after staring treatment was at 2 months and blood flowed freely. I have had no problems since.
Wound healing – Used to be nearly non-existent. Even small cuts would last for a long time. Now wounds heal quickly and normally.
Disregulated vitamin D – Original tests showed 1,25D level of 57 pg/ML, about twice the population norm. I am now down to the low 30’s, within normal range.
Sun sensitivity – Prior to the MP I already knew that the sun caused problems. A few hours of fun in the sun would make me feel horrible all night and most of the next morning. Sunburn would put me down for a week. For many years I have worn large brimmed hats, sunglasses, and long sleeved shirts in the sun. When I started the MP my sensitivity increased spectacularly, especially in the eyes. As I have progressed through the MP my sensitivity has steadily decreased. I am now at about the same level I was prior to the MP. Well, maybe a little better. Last summer I still managed to spend a fair amount of time outdoors, kayaking, fishing, swimming etc. . I used some basic precautions and did not have any serious problems, or any moderate ones either. I have enough optimism for this summer that I have already ordered a new kayak.
There are probably a lot of other little things that I never considered symptoms and can’t remember when they stopped. But I find all this introspection a bit boring. I prefer looking ahead. I guess the biggest change is that I now can make plans and have a reasonable chance of seeing them through. I now seem to have a future.
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Jeannine R.N.
Board Staff
| Joined: | Sun Aug 28th, 2005 |
| Location: | Louisiana USA |
| Posts: | 901 |
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Posted: Mon Jan 29th, 2007 04:07 |
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As a fellow patient on the MP with most of your symptoms your story will be one that sticks in my mind as I keep from going half mad as your sig line says LOL...At least with the MP the herx can be managed...which I am learning...So thanks for sharing your wonderful story with us...I know that it will help many others as well! Keep us updated
Jeannine
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CFS FM Lyme Morgellon's 125D49 Ph1Aug06 25D <4(april 08)Prozac Valium Aleve ModPh2May07 Ph2Apr08 NoIRs limited outings covered lo lux home
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eClaire
Member in Phase 2
| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
| Posts: | 566 |
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Posted: Fri Feb 9th, 2007 07:30 |
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| Yeah Ken!!! It is reports like yours that keep me going! Thanks, Claire
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CFS FMS MCS COPD hypermobility IBS/GERD osteoporosis 125D48 25D8 Ph1Dec06 ModPh2Jun07 NoIRs limited outings covered up low lux home abx brk 3/2-5/25/08; Temazepam 9/26/08; Ph2Oct29
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kmg
Member
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Posted: Sun Aug 26th, 2007 20:00 |
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I have tightness in my jaw and then I open my mouth and it 'clicks' or 'cracks' and then is okay until it happens again. But, I never attributed it to Sarcoidosis.
Thanks Ken for your posting... found it interesting. Keep up the treatment and the progress reports!
Karen
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Sarc lungs/skin. Started Phase I and then lost my nerve. Working on modifying my lifestyle so can successfully restart the MP. Don't know when, but when I begin, I want to make sure I'm ready 100% and that I don't back out.
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