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prugg21
Health Professional
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Posted: Sun Mar 4th, 2007 21:08 |
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As I make this report, I am just under 4 weeks shy of my 1 yr mark on the MP. I started the MP 3/30/06 with benicar and phase 1 on 4/17/06. I switched my primary abx from mino to demeclocycline at the beginning of 10/06. I made this change due to issues with my levels of fatigue and weakness which I felt were above and beyond what I was able to cope with. I'm so happy I made that change as it reduced my level of exhaustion, weakness, SOB and heart pounding when standing up to a very noticeable degree.
I then started a modified phase 2 on 10/17/06 with the addition of a second abx. I also feel that paying strict attention to my food intolerances as well as chemical, mold, and pollen sensitivities while on the MP has made IP more tolerable than it otherwise would've been.
I have probably been infected with CWD bacteria my entire life, the earliest thing anyone remembers is that I had a constant cough even as a baby that doctors couldn't diagnose. My parents smoked and I remember hating milk as I felt like I was suffocating after drinking it. So, I simply have had reactions to foods, pollens, molds and chemicals for as long as I can remember. The way these showed up was primarily with eczema and IBS, but also with chronic bronchitis and urinary tract infections.
In my mid 20's I had a year long episode of flu-like symptoms with constant swollen glands and sore throats and low grade fever and became very fatigued and weakened. By the time I realized what was happening I had become exquisitely chemically sensitive also, to the point where going to church (or any massively perfume laden place) would cause me to get an instantaneous migraine, feel very faint and sweaty and at times I would have neurological effects such as being unable to stop talking at inappropriate times or even crying suddenly for no reason.
Another example might be if I touched pressure treated wood I would have nerve pain in the hand and arm that touched it which would go into my chest resulting in heart attack type sx of extreme chest pain and altered heart rates. These are just a couple of examples of the extreme gamut of sx I would have from many different chemical exposures.
After exposures such as these, I often needed to lie in bed to recover, at first just for the rest of that day, as time went on, the recovery period could be as long as 4 days to a couple of weeks. This could happen just from breathing in a chemical or fume without any physical exertion whatsoever on my part.
Within that yr I also was involved in a car accident in which I sustained whiplash and a tendon injury in my back. Within a very short time I started to have fibromyalgia in my back and legs.
Once I started to limit my diet to only organic whole foods and allow absolutely no chemicals or pollutants inside my home I began to feel at least somewhat normal and could actually function fairly normally. However, I was still very sick and could not function outside my home environment other than short trips to the grocery store, drs offices, etc and even then I had to be exceedingly careful with what those other environments were going to be like before I could go there, i.e. calls made in advance and learning what was there before I could allow myself the luxury of setting foot in there.
My improvements since beginning the MP:
MIGRAINES: I haven't had a migraine headache since I started the MP. I had a migraine on average once every week to 10 days pre-MP. I had daily small headaches in phase 1, and those are even becoming less frequent and less severe the longer I'm on phase 2.
FOOD INTOLERANCES: I've been able to add about 6 foods back into my diet, some regularly, others on occasion that I had trouble eating for yrs pre-MP. This feels huge for me as I have about 30 foods I have to avoid all the time.
ARTHRITIS: I haven't had as much arthritic pain in my elbows, feet or hands since starting the MP. Hip joints have hurt more constantly however on phase 2. I did have a lot of problems with my hip joints pre-MP, so I am hopeful it is killing bugs there, and I won't end up needing a hip joint replacement later on.
I've also had increased neck pain for the past couple of months.
FIBROMYALGIA: Leg (thighs) and back pain have decreased, I don't beg my husband for massages nearly as much as I used to. When I do have it now, it's definitely IP related and comes and goes very quickly.
TINNITUS: It actually disappears now sometimes for a whole day at a time. For 1.5 yrs pre-MP it was a constant 24/7 thing.
BLADDER: I can now often sleep through 5-8 hrs without having to get up and pee. For years, I have had to get up every night to pee, sometimes if I had an exposure to formaldehyde, I'd have to pee 7-8 times within a 1 hr period at night, full bladder too.
LUNGS: A tight feeling in my lungs happened occasionally pre-MP. In phase 1 it was a very common sx, since starting phase 2 it has gradually stopped happening and now it's much more sporadic.
SKIN: Some hives off and on, especially in early phase 2, not so much now. Also some itching and red welty rash on rib cage earlier in phase 2, has disappeared.
INSOMNIA: Always a major problem for me pre-MP, seemed to come with almost any type of exposure or consuming any allergenic food or supplement. This was really awful for me in phase 1, has gotten better in phase 2 and I am now able to get enough sleep each night/day for the most part and some nights it is without wakeups.
NUMBNESS: Pre-MP I often woke with numb hands, this happened even more in phase 1 + I even had new parts going numb like my R hip/groin. Now it's happening less than pre-MP. Sometimes, recently my lower legs and ankles go numb if I'm sitting in a chair with a cat laying on my legs.
WEAKNESS/FATIGUE: This I controlled to a great degree pre-MP by diet and environmental controls. On starting the MP, it was one of the worst sx I had and was beyond unbearable with any infraction of environmental controls (mainly vast chemical avoidance). Suddenly it seemed within about a month of starting phase 2, I was able to endure more physical exertion or a trip into town without being utterly exhausted after. Now, I can go into town, do several errands, maybe go out to dinner and come home and still have some energy left to do something else, instead of having to lay in bed for several hrs.
LIGHT SENSITIVITY: At about the same time the fatigue decreased, I noticed I didn't feel the same exhaustion or aches from light exposure. I've graduated to using 40% NoIRs in my home mostly now. I've darkened my TV and computer even more so I don't have to keep switching glasses. I only seem to need 1 pair of 2% for outside instead of the 2 prs I needed in phase 1, and it's quite sunny here most all the time.
I added the 3rd abx on 2/10/07 and this has increased my sleepiness, forgetfulness, brain fog and spaciness on a sporadic basis. My fine motor skills seem somewhat affected at times too, in that I seem to drop things more frequently and have a little more trouble opening jars. The addition of the 3rd abx has had a slight affect on my mood in that I am slightly more irritable but only for very short periods of time. Not much depression at all really. The fatigue I have since adding the 3rd abx seems more mental now than physical, which can be frustrating. I don't need to rest nearly as much as I did in phase 1, although I still have times where I absolutely must.
Some of my labs have gone up like cholesterol and kidney values, all associated with increased bug killing, but I've been able to keep IP tolerable for the most part and it has not become intolerable for more than a few hrs at a time.
Although I've stayed indoors in a completely blacked out house with only occasional trips out fully covered and with K cream and zinc cream on exposed areas, and also adhered quite strictly to a no D diet with no D supplementation pre-MP, my D level has yet to drop significantly from where I started. Despite this, I feel that I'm definitely having IP, killing bugs and improving.
I have so much gratitude for Dr. Marshall and his astounding body of work and making it known for everyone's benefit. Many thanks to all the moderators and MP members and your support. A very special thanks to Aussie Barb for your unending support.
Pam
Last edited on Sun Mar 4th, 2007 21:41 by prugg21
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MCS/CFS/FM,22+yrs,Gerd,migraines,insomnia,avoiding light & D,NoIRS,benicar 3/30/06 40mg Q4-6H,mino,4/18/06,mod/ph2-
10/17/06,probx,estriol, 3/06-25D=27,9/06-25D=26,11/06-25D=21,4/07-25D=22,7/07-25D=19
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eClaire
Member in Phase 2
| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
| Posts: | 566 |
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Posted: Mon Mar 19th, 2007 05:22 |
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Pam,
Thank you for your update. Your update made me realize that I ought to have been recording a symptom I've been having. Since starting the MP, I've been having numbness in my hands--that is, my thumbs and pointer fingers when I wake from a sleep--and also in my heels at various times during the day. I've been reticent to write it down b/c I haven't known how to distinguish it from the normal feeling when a part of the body has "fallen asleep." I guess unlike that sensation, I can feel the affected part even though it is all tingly and feels numb. Whereas, wiith the normal "falling asleep" feeling, the body part affected almost feels unrelated to my body. That doesn't sound like much, but it does feel distinctly different and is more frequent; plus, I'd never just had my heels fall asleep before.
Thanks again for providing such a detailed account. 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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VEZ R.N.
Board Staff
| Joined: | Fri May 19th, 2006 |
| Location: | Ohio, USA |
| Posts: | 2469 |
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Posted: Mon Mar 19th, 2007 09:49 |
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Pam,
Thanks for writing such a detailed report, while reading it I realized I could have put my name at the bottom of it.........I can not believe I had so many of the same problems along with the horrendous coughing.
It looks like you are on your way, I am so happy for you. I also feel like I am progressing pretty well too. I will continue to watch your progress and wish you continued great results and complete healing. Hang in there, you will make it!! Warmest regards, VEZ
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lung gran x13 yrs neuro cardiac smp chronic cough joint pain TMJ pain tinnitus Factor V Leiden| armour probiotic|lowlux home NoIRs 6/30 Beni q4+prn 8/28 mino| 6/30 1,25D-58.3 25D-33.6| TSH-10.6 12/16/06 25D-9.6 TSH-8.63 8/06-25D=7|
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Juanita
Member in Phase 2
| Joined: | Thu May 3rd, 2007 |
| Location: | Alberta Canada |
| Posts: | 257 |
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Posted: Fri May 18th, 2007 20:27 |
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Thank you, Pam, for your clarity and detail. I'm glad that you are feeling benefit from your MP dedication. As someone waiting to start, clearly keeping a list of what's going on is not only helpful for ones self, but also for others when we share at the site later on. Thanks for the head's up. We already keep a calendar of what exposures we get each day so that we can understand why we are suddenly worse, so starting one of how things are going on the MP shouldn't be too hard. I just wouldn't have thought of it on my own.  Juanita
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MCS, CFS, FM, CS, DH, stroke neuro, seizures, skin ca, IBS, eczema, irregular heartbeat| NoIR avoid light and D| Sept 21/07 25D-40.8ng/ml| May 7, 07 1,25D-35.8pg/ml
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prugg21
Health Professional
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Posted: Tue Aug 21st, 2007 22:48 |
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I thought I'd post while on my MP break to let people know my encouraging news. Fantastically, I can say without doubt I have noticed remarkable improvement in my overall level of health.
I had gotten into a state of intolerable runaway herxing and have been forced to stop the MP for the present. I had a difficult time getting off it and since I'm not able to use steroids without severe ill effect, I found I needed to wean off my abx and benicar very slowly. It helped me to use small amounts of siberian ginseng, an adaptogen herb with some anti-inflammatory properties I tolerate well and milk thistle helped some too.
Once I felt better, we took a trip to Colorado to visit our daughter. Although I didn't know if I was ready to make another trip so soon, it was good as I was able to see how much good the MP has done for me in the 16 mos I was on it.
I cannot believe the magnitude of how much better I feel and the level of improvement I can now tell you about.
First of all, I was able to go up to 12,000' elevation and HIKE!!! It is true I was gasping a wee bit for air (consider that I'm still anemic), but muscle wise and aerobically I was noticeably less weak and better than pre-MP.
I used to get a crushing headache when in the presence of Douglas firs and spruce trees which were all around us in Colorado. Now, nothing.
We drove down mountains with cars in front of us riding their brakes, no symptoms from breathing the brake
dust. Used to get a migraine.
I was able to exercise on a treadmill at our hotel and then sit in the sauna a few min afterwards with no problems. A sauna alone used to make me collapse after a few min and I did 3/4 of a mile on the treadmill first!
Also, I didn't get carsick at all, even was able to read on bumpy winding roads for extended periods. Not possible preMP. I just have more energy and endurance, more of what I always thought I should have. I think I'm about 30-40% better than preMP and my daughter definitely noticed this too. I am so encouraged, so of course I want to continue with the MP. I even started thinking about planning a winter ski trip for the future! That's way in the future, or is it?
Of course I still have some reactions, but these are to the previously absolute worst offenders for me. Like I woke up hoarse and stuffy in a hotel room that had a heater that wouldn't turn off. I don't tolerate fried dust well at all allergenically. Still bothered by particleboard and mold, but the reactions are much less than before. In fact, my daughter and I had a mold exposure on the trip and my reaction was virtually the same intensity as hers, she's far less sick than I was pre-MP.
I'm SO excited to be able to tell everyone this! I know I still have a long ways to go and many more icky days, weeks and months of herxing to get there, but it makes it seem so worth it. And, as Dr. Blaney said, I feel greedy for more!
For now, still breaking and enjoying life to a degree I wasn't able before.
Pam
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MCS/CFS/FM,22+yrs,Gerd,migraines,insomnia,avoiding light & D,NoIRS,benicar 3/30/06 40mg Q4-6H,mino,4/18/06,mod/ph2-
10/17/06,probx,estriol, 3/06-25D=27,9/06-25D=26,11/06-25D=21,4/07-25D=22,7/07-25D=19
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Toni D
Member Advocate
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Posted: Wed Aug 22nd, 2007 04:59 |
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Good to hear from you, Pam. Thanks for sharing your great news. You've come a long way ...praise God. Enjoy yourself some.
Feel good and be blessed.
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DX sarcoid-1970 glaucoma high BP asthma allergies| Meds-Lasix Xopenex Nevanac Cardizem Nizoral Cream| NoIRs No D/sun | 08/05 1,25D=38 07/07 25D=4| BeniQ6H 09/27/05| ModPh2 07/06; Ph 2 09/07|
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VEZ R.N.
Board Staff
| Joined: | Fri May 19th, 2006 |
| Location: | Ohio, USA |
| Posts: | 2469 |
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Offline
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Posted: Wed Aug 22nd, 2007 10:41 |
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Hello Pam, thanks for the good news!
Nice to hear from you and that you have noted so many improvements. It does get you excited to think about what is to come that is for sure.
Good to have some family time as well and feel well enough to enjoy it!
Thanks for letting us know how you are doing and keep us posted on your progress. We are happy to assist you on your journey back to good health.
Warm Regards, VEZ
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lung gran x13 yrs neuro cardiac smp chronic cough joint pain TMJ pain tinnitus Factor V Leiden| armour probiotic|lowlux home NoIRs 6/30 Beni q4+prn 8/28 mino| 6/30 1,25D-58.3 25D-33.6| TSH-10.6 12/16/06 25D-9.6 TSH-8.63 8/06-25D=7|
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