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Aussie Barb
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Posted: Mon Sep 11th, 2006 20:37 |
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jolbell69: Chronic Borreliosis & Bartonella ME CFS: I have recovered well from my debilitating illness with the MP. The MP has been a miracle for me!!
Jun 22nd, 2006:
Dear All,
I have been on the MP for exactly 2 years on Saturday.
I have recovered well from my debilitating illness with the MP - to the point I go out every day, and am thinking of returning to work later this year.
The MP has been a miracle for me!!
Oct 10th, 2006
I had a fantastic time in Greece with some transitional problems, usually due to too much sun - not intentionally. It was the holiday of a lifetime, and I don't regret a minute of it!!!
Jo.
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Jolbell: DX:Chronic Borreliosis & Bartonella, ME/CFS, Autoimmune Thyroid & Hypoadrenia. TX: Armour90mg, Cortef12.5mg, Florinef0.1mg, Prozac. StartedMP: 25June04. 25,D=16.7ng/ml, (Jan05) No1,25Ddone. Benicarq6h. Started Phase I:19May05. Started Phase II:16Sept05
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Aussie Barb
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Posted: Mon Sep 11th, 2006 20:41 |
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Carole: In Phase 3: I am “living” proof that the Marshall Protocol is the only answer to being a Th1 survivor!
Jun 26th, 2006: The following is a summation of medical problems and of symptom resolution that was presented for the "Panel on Healing" at the LAX ARF Conference (6/18/06)--
- Diagnosed with sarcoidosis following a mediastinoscopy in February 2004.
- Medical/physical problems—Have had a lifetime of medical issues:
1.) As a child—kidney inflammation, chronic tonsillitis, sinus problems, and behind-the-knee pain.
2.) As an adult—In 1974, had a normal delivery of our son after late term swelling and elevated blood pressure. In 1975, my first breast lumpectomy was performed. I sought medical care for escalating back pain, stiffness, and numbness.
In my early thirties, I had back surgery and a pituitary tumor removed. Thyroid nodules, a goiter, and cardiac problems emerged. My spleen became enlarged, as well as lymph nodes in my groin and neck. Sun rashes appeared with sickness and weight loss. Swelling in my toes and feet made it painful to walk, and I suffered extreme exhaustion and breathlessness. I slept for days and tested positive for mono.
In my mid-thirties, I was on a beta-blocker for increased PVCs and tachycardia. I developed more back problems and received a diagnosis of myofascial pain syndrome with a ticket to rehab. I had lesions on my palms biopsied, took prescriptions for gastritis and gastroduodinitis, and developed transient loss of vision. I was diagnosed with mitral valve prolapse, and migraines became my common headache.
I began Synthroid in 1989 and abnormal tissue was found in my colon. The next year began a series of returning cervical polyps, the removal of my gallbladder, and a TMJ diagnosis. I sought care for cervical and lumbar sprains and scoliosis.
In my early forties, heel pain began; and elevated blood pressure became a concern. I faced months of urinary tract infections (strep in my bladder), yeast infections, vertigo, and continued cardiac issues.
In 1995, I was referred to a cardiologist. Prolonged spasms and pain, with decreased mobility, led to a positive ANA test for lupus.
Within the last ten years, more symptoms arose: swelling of the salivary glands, substantial hair loss, and breaking of my fingernails just above the cuticle. Fibroids, excessive bleeding, and pain led to a hysterectomy. Recurring colon polyps (pre-cancerous by 1999) and breast cysts required close monitoring. Leg pain, teeth sensitivity, tendonitis, bursitis, and what felt like fluttering in my brain were added to my previous escalating complaints. It became “normal to have an abnormal EKG.” By the time I had turned 50, I had been examined, monitored, and tested by a multitude of specialists all the way to the Mayo Clinic.
By 2003, I was plagued with a recurring chest rash; an intense, all-over body itching; and fractures in my teeth. I agreed to two crowns, then the preparation revealed severe absorption in my jaw and the need for a root canal. I had osteoporosis. Years of overall edema had grown worse with cellulitis of my nose and swollen eyelids. Near the end of that year, swelling and pain in my legs were becoming unbearable; and I was losing the ability to freely move my legs.
To make a long story short, my lifetime accumulation of coping skills were no match for the battle I was facing—sarcoidosis. Upon finding SarcInfo.com and the list of hypervitaminosis-D symptoms, I knew I had found the answers I had been searching for a lifetime. I immediately stopped all supplements (including vitamin D) and my steady diet of fish and eggs.
Moments we knew the MP was working—With the blessing of my internist, I began Benicar. Simply with Benicar and avoiding D, I was able to bend my knees to an improved angle and attempt to climb the stairs with less pain. Within three months of ramping to Phase I of Benicar and Minocycline, my CT scan indicated a slight decrease in lymph node size. By six months (one month into Phase II), there was a significant improvement throughout my chest, with resolution of infiltrates. My blood markers were also improved, and my physician was no longer skeptical about the protocol.
Further improvements—At six months, I no longer had nosebleeds from nasal sores, nor chronic headaches or migraines. I no longer had swelling, bloating, or general muscle/joint pain except for behind the knees. My heart symptoms had been nearly eliminated, and my thyroid function was improving. My hair had stopped falling out, and my blood pressure had gone from 180+/115 to normal to high normal. My lifetime of sinus problems disappeared, and my sense of smell returned. I no longer had rashes or even severe reactions to insect bites. My bouts with loss of vision had been eliminated, and my blurred vision was improving. My teeth were not as sensitive, and I was regaining my balance. The metallic taste had disappeared, and I was able to swallow food normally. (All this at six months!)
As I speak today after 28 months on the Marshall Protocol, my symptoms appear to be herx-related and are tolerable.
- All my blood markers and scans are normal.
- My thyroid medication has been reduced now to less than half, at 62.5.
- My annual vision test this month was better than last year’s, and my recent EKG has even improved.
- I’ve also learned from an echocardiogram within the past few days that no left ventricular hypertrophy remains.
In addition to the earlier-mentioned benchmarks, I no longer have any previous “prolonged issues.”
- Past fatigue, throat pressure, and insomnia seem to be herx-related and minimal.
- I’ve regained stamina, strength, and thought processes.
- It’s wonderful to be able to lift and carry knowing that I will not suffer from back spasms or pain.
- I can climb upon ladders and chairs with confidence from improved agility and balance.
- I can finally kneel and sit on my feet to garden or to get into the bottom of my closets.
- I no longer have to be on guard when I speak, worried about saying words that have nothing to do with the context of the conversation.
- I can turn my head and not lose my vision. I can see clearer images instead of guessing.
- I can take a Benicar or an Advil for a herx-related headache and know that it will not escalate into a migraine that even morphine could not dampen.
- I feel less tissue swelling and see my muscles becoming more toned and defined. -And I can feel the presence in my chest, neck, and arms of normal blood pressure.
Do not be discouraged about the D-levels because healing is possible, slowly but surely. My D-levels were as follows:
1/2004 (41)
7/2004 (33.48)
1/2005 (22.56)
7/2005 (20.48)
1/2006 (14.4)
7/2006 (14)
1/2007 (9)
I am “living” proof that the Marshall Protocol is the only answer to being a Th1 survivor! I am forever indebted to Dr. Trevor Marshall!
see also:
Carole: MY MP Story
Carole: Edema resolved and Muscle strength and tone return.
Carole: celebrating my most recent test and CT scan results
Carole: History and Improvements...
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Carole: PWC 50+ yrs| 20+ CFS FM Pituitary Thyroid IBS Cardiac OA Migraines +ANA Osteoporosis 2/04 Mediastinoscopy ~Sarc |1/04 1/06: 125D=85,34; 25D=41,14| ACE=68,43|
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Aussie Barb
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Posted: Mon Sep 11th, 2006 20:47 |
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Leesa: Sarcoidosis: Uveitus: What a gift the MP is to me…. it is giving me the gift of getting better, not only for me, but for three little kids that need their mommy. It has been almost 6 months and I am already at the point where I just dropped my eye drops completely (I had terrible uveitus)!!
Jun 26th, 2006: I am so glad that I attended the conference! Thanks Dr. Marshall for all that you have done for all of us! Although I always thought that I was probably doing the right thing by going on the protocol  , now I know for certain  , 100% that I am doing the right thing!!!! Wow, to feel that way about something that you are doing, it makes it work even better .
YEAH I cannot imagine where I will be next year when you all see me again!
I so much enjoyed hearing the success stories that we all shared with each other. Hearing the science behind the protocol was powerful.
And-most importantly-I am doing and feeling really GREAT. I make a ton of modifications to make what I do MP friendly, but I am living life again and I LOVE IT!
I want to shout from a mountaintop at how far I have come because I am sooo happy.
THIS IS THE ANSWER; THE MP IS THE WAY TO GET BETTER. I AM RECOVERING FROM SARCOIDOSIS. I AM BACK AND I LOVE IT....
I have my life and my family back thanks to Dr Marshall and those of you who encouraged me after my first post when I was unsure…THANKS to all of you!
Leesa
see further re updates 
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Sarcoidosis(12-04 biopsy):Uveitus-eyes, Swollen- Parotid Glands, Granulomas-arms, some joint pain & fatigue; Started MP 1-06; Started Phase 2 03-06 Phase 3 07/06 NO MORE Eye Drops! D test 11-04:1,25D-70 & 25D-46;(5-06)25D-29
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Aussie Barb
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Posted: Mon Sep 11th, 2006 20:50 |
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UshiAad: ME: La Vita e Bella - Life is Beautiful - Het Leven is Mooi:
I have moved to phase 3 since beginning of June. So far eveything smoothly. Body responds very well manageable. Body still improving further, symptoms getting less or disappearing.
Jun 26th, 2006:
Last week I caught myself wondering what was missing ….and it was the headache top left which had been there for 13 years  ! Not to get overexcited but it has not yet disappeared completely.
MP seems to be working on my problems with getting over colds !
MP doesn’t seem to have any sort of impact in whatever concentration.
Yesterday went skiing for a couple of hours (yeah down south we only have like 6 hours daylight now) and today I feel ‘normal’ without a relapse, which is a bit strange ……
The only way is up !!
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Diagnosis ME 1993, D free diet and low light since 20/7/5, pulsed mino from 24/8/5 till 19/9/5 and Benicar since 21/9/5; Benicar/Mino since 3/10/5; 25D 4/10/5 6; 1,25D 4/10/5 21, NoIR's since 6/11/5; Phase 2 since 25/12/5; Phase 3 since June 2006
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Aussie Barb
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Posted: Mon Sep 11th, 2006 20:53 |
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katydid: CFS, MCS Fibro: Getting My Life Back!
I started thinking this weekend about which symptoms have completely gone since starting the MP. Once I started thinking about it, I realized just how profound the changes are.
I'm currently on a frequent dosing break, and it's giving me a look at the future, and it sure looks good!
When I started the MP, (Jan.'06), I had essentially been on the couch, or in bed, unless I was taking food out of a box, or can, or bathing. There wasn't any cooking done, except for the microwave. Housework was left undone, unless someone came in to help. I just couldn't do it. I had been this way since April 2005, when I was forced to leave my part-time job because I just couldn't do it anymore. As soon as I left, I realized just how bad I felt, and how hard I had really pushed myself, and gone so far past any physical limitations, that I wondered if I would ever make my way back. I was really getting frightened that I would never have any kind of life again, and would just exist. I couldn't even listen to music, because I got nothing out of it, and it used to be a large part of my life.
I herxed really hard for the first couple of months, and the months since have been a little easier since learning how to minimize herxing by moving slowly enough, and using meds. I was so ill that I have to move very slowly.
My fatigue, now that I'm taking a break is probably reduced by 60%!!!! When not on a break, I figure something more like 40, or 50% reduced. That's really huge, when you can do home improvement projects like painting, and re-organizing storage rooms. I didn't even have the brain function to do organizing before the MP. I'm sure I won't be doing projects yet while herxing, but it's coming!
Brain function is so improved that for the first time in my adult life, I can type faster than 30 wpm. I've typed for years, but just never got fast, and always made so many errors if I was sick, that I had to slow down to about 10. I'm now at about 50. I'm even going to drive cross country next month!!! (I wouldn't do it if I didn't have to, but I can't believe that I'm am able at all!) I can listen to and enjoy music again.
My chemical sensitivities are essentially gone!!! I can now use bleach if necessary, and perfumes no longer bother me.
Sinus headache that I had for about a year, is almost non-existent.
Jaw pain that I've had since an infected tooth in 1996, gone.
These things were all my baseline daily friends, that I thought I'd have to live with for the rest of my probably shorter than normal life. I was getting to the point where I realized that CFS was progressive, and at some point fatal. Now I know that it doesn't have to be that way.
Many of the other daily friends like swollen glands, and aches and pains, come and go with herxing, but seem to not be as troublesome on a daily basis. I was used to feeling really ill on a daily basis, and that awful feeling of knowing something is really wrong with my body is so much better.
My light sensitivity is some reduced since starting. I don't get sick, shaky, or sweaty when going out like I did at first. I'm good for a few hours covered, if necessary. At first, an outing of an hour took a day to recover from. Now I get almost nothing from several hours. We'll see how the car trip goes!
My eyes have improved since starting MP, according to my eye doctor. Last time I had driver's license renewed, I couldn't pass the eye test. You have to have 20/40 or better to drive without corrective lenses. I couldn't read the 20/40 line at all.
Today, I read the 20/30 line with no trouble. The eye doc was so intrigued by eye improvement that he wrote down information on the MP, and was going to tell his sarc patients about it.
I hope that this offers hope to others! The MP isn't easy, but it's definitely the way to go. I tried everything else that there was out there, but kept getting worse. Life really is sweet these days!!! I know that there are rough times ahead on different abx combos, but I have faith that it is working.
Kathy (happily, at six months on the MP)
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CFS, MCS Fibro,19 yrs.Prof.fatig.,joint/muscle pain.1/13/06 NoIR's & Benicar 40 mg Q4H.6/17/06 Mino 50 mg q24h.D's 12/20/05 25D-7, 1,25D-19.Vicodin 10-325 1/2 PRN.12/27/05 Avoid sun,D.Windows blocked,out avg 6 x wk covd & cream
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Aussie Barb
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Posted: Mon Sep 11th, 2006 20:56 |
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Guss Wilkinson: PSORIASIS: The following is an article on my experiences with Psoriasis on the MP.
Jun 27th, 2006: I have suffered from Psoriasis for as long as I can remember – my mother tells me that I was about 7-years old when I developed symptoms – it started as large rashes on the front of my legs and quite thick lesions in my scalp.
I was very self conscious about it at the time and refused to wear shorts – not good when shorts were part of my school uniform. I also tried everything in my power to avoid PE at school where I had to wear shorts. When friends asked me what I was suffering from I would always reply that it was eczema – they knew what this was and it was safe, but Psoriasis sounded dangerous and contagious.
No body in my family had Psoriasis – I now suspect my getting it may have had something to do with the fact that I had a blood transfusion at birth – but that is just speculation on my part.
I was treated using topical steroids such as Dermovate as well as other stuff such as tar shampoos, Dithronol and a whole host of complementary creams of a pseudo-scientific nature. I was also given topical steroid injections.
Nothing made it go away, but some of the treatments had a soothing effect. Generally, though, the Psoriasis seemed to have a will of its own – it flared and settled in irregular unpredictable cycles.
At the age of 13, I also came down with the Arthritis associated with Psoriasis – quite badly at first. I remember that I was continually in excruciation pain and I couldn’t close my hands sufficiently to hold a pen.
Within a year, the arthritis seemed to vanish. I had been prescribed an anti-inflammatory medication and my parents had put me on a very strict non-refined food diet handed down from a herbalist – I am personally very sceptical if either were a contributory factor to the disappearance of the pain.
My Psoriasis remained the same until I reached the age of 19 after which it seemed to spread. Over the years it spread to the abdomen, the chest, the arms, the hands and my back until I estimate that I had around 70% coverage: very little in the face, thankfully.
The Psoriasis didn’t affect my self confidence thanks to a wonderful girlfriend, Helena, who became my wife when I married her at the age of 21 in Feb 1985 – for her, beauty wasn’t skin deep (and there was plenty of that!!). I was also an accomplished martial artist and exercised vigorously – something that may also have contributed to my self confidence.
I was treated with ultra-violet light, fish liver oils and a multitude of creams which continued on for many years. This treatment did help at first but there was always a backlash after treatment stopped.
Later on, at the age of about 35, I was prescribed PUVA treatment which had no affect whatsoever apart from making me feel very ill. That was when I gave up – no more treatment again for Psoriasis – ever!! From then on, I considered Psoriasis to be other people’s problem, not mine. This attitude felt like a great weight off my shoulders and I felt really good about myself.
One of the most unwelcome things about having Psoriasis is the fact that there is no shortage of people that come up to you to volunteer advice: secret cures, supplements, poultices, magnetic therapy, crystals, chi, healing hands, prayer and other complete rubbish. These people are not the ones that have or have had Psoriasis themselves – but they all know of countless anecdotal cases that prove their own brand of quackery. Inside, you want to tell them all to mind their own business, but no, you politely smile and thank them for their concern.
Then, in 2002, I was finally diagnosed with Saroidosis in the lungs after a period of time of feeling really ill. I was immediately put on Prednisone and the symptoms all disappeared (including the Psoriasis) – but it all returned with a vengeance when treatment stopped. I never felt good when the symptoms stopped as those symptoms were replaced by the nasty side effects of the steroids.
After the first failed treatment with Prednisone, I was put back on another course and the experience this time was similar to the first except that my original symptoms didn’t vanish completely. And, once again there was a horrendous backlash when I stopped the Prednisone.
This is the point at which Meg contacted me towards the end of 2003 to inform me about the Martial Protocol (as written in my previous posts). I did not have Psoriasis on my mind when I started the MP – for me, this was purely about fighting the Sarc.
The first year on the MP was very hard – not as much was known then and I struggled hard to continue training Karate, hold down a job and continue studying. This period in my life seems like a bit of a blur now and I have to concentrate hard to remember how I felt.
It took about a year before I started to notice that my Psoriasis was also improving and over the course of the next year it started to recede to about 10% coverage. Herx, as far as my skin was concerned, didn’t follow my other herx patterns – the Psoriasis continued to have a mind of its own and it waxed and waned as it had always done. But there was always a direction towards improvement till I reached about 5% coverage – where it remained for some time (all I had left were some lesions on my forearms and my hands).
I finished all the ABX combos late October last year and Trevor advised me to restart the 3-abx combos at full strength. This I did, and I started herxing quite strongly once again. I knew that I couldn’t have been done with the MP as I still had the 5% Psoriasis coverage left. This new herxing also caused the Psoriasis to flare once again. It flared quite badly – it was very angry, aggressive and painful and my coverage increased to around 30%.
I felt very disappointed at the time and I started to feel very self conscious again – I had gotten so used to having so little coverage that I must have started to take being without for granted. I really had to concentrate hard to recount to myself all the other symptoms that had vanished through the MP in order to keep faith and carry on.
It paid off. I remained on the first ABX combo until the beginning of June at which time my coverage was back to its 5%. I changed combo and the last three weeks has seen the Psoriasis vanish to what is now an estimated 1% coverage.
The only symptom I have left (apart from my 1%) is the phlegmmy cough on exertion.
So, here is some advice from somebody that has had Psoriasis – start the MP and stick with it. Forget your symptoms and stop monitoring them. Keep yourself distracted and let time and the MP to do its thing.
I hope this helps.
Cheers
Guss
May 2007:
My psoriasis remains constant at around 1% - 2% coverage, but those spots are very slowly fading.
The skin does seem to be the most stubborn, but for me it is a great indicator of how I am progressing. It is funny that the bits that are the most stubborn are those that have been exposed to the sun the most - the hands and the forearms. The exception there must be the face (which must have had the most sun exposure) and I have no psoriasis left on the face.
My skin did not seem to clear up until July 2004 - but when it did, it went very fast. I was pretty clear by the beginning of 2005 and progess from there has been much slower...but it is progress!
Psoriasis is a different beast to eczema - it looks uglier and angrier, but it is far more benign - no itching (in comparison). The only time I really felt the psoriasis was when there was a flare-up and the skin got tight and split...and then there were also some sensitive areas which got irritating.
I long since gave up treating psoriasis. For me it was other peoples problem, not mine...and now I don't need to treat it - yeeeha!!
see also:
Guss Psoriasis: 3 years progress Oct 3rd, 2006
Guss psoriasis June 2006
Guss Update Apr 17th, 2006
Guss doing well Dec 20th, 2005
Guss Insomnia Jul 19th, 2005
Guss exercise questions Jun, 2005
Guss My MP experience May 25th, 2005
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Guss: Dx Sarc May 2002 Stage 2. Estimate Sarc since 1987. Lungs, Joints, Kidneys & GI. Two failed Prednisone courses. (Started MP: Oct 2003 - D25...31ng/ml, 1-25D...76 pg/ml), Phase III since July 2004; Benicar Q8H, BP 100/60. Feeling pretty good!
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Aussie Barb
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Posted: Mon Sep 11th, 2006 21:01 |
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RxAngel: FMS Mis-DxLyme: I have decreased my pain meds & muscle relaxers by over 50%, and in the last couple of weeks have been feeling absolutely the best I've felt since college. It's remarkable to feel my muscles sliding over each other instead of jerking and catching.
Jun 30th, 2006: Hi - I think I am ready to start Phase II.
Thanks so much - I am so excited, and for the first time in 10 years have some hope for a future!!!!
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RxAngel: MP 1-6-06; FMS/Mis-DxLyme; Corgard (migr. prev), T3, Norco, Zanaflex, Prilosec, Effexor, Trazodone prn sleep, Imitrex 100mg prn, Garlic, E, B-6, av. light/D; Beni 1-6-06; mino 25mg qod 1-14-06 (now 100mg qod 1-24-06); Vit D=24 5-06
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Aussie Barb
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Posted: Tue Sep 12th, 2006 02:21 |
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robertrr: Sarcoidosis: I think I'm pretty normal as far as what I can and can't do. Enough that if I didn't wear the NOIRs, folks would not know I had Sarc or was on the MP at all just by meeting me.
wrote: Oct 21st, 2005:
the good news for me.
-My lymph glands in my neck (the first sign to me that i had Sarc) are smaller than they've ever been since first dx 3 years ago.
I'm sure I had Sarc for years but that particular year I'd done a lot of vit d supplements and it kicked the Sarc into high gear.
-Also, for the most part (90% of time), I'm sleeping much better and enjoy a restful night.
-This last 10 days or so I have had a lot of energy and having to watch myself to make sure i don't do too much . Progress has been good and I'm very optimistic.
Dec 3rd, 2005:
-I have not experienced night sweats/hot flashes in a very long time.
-For the most part, I sleep very well these days (still have an occasional night of insomnia but much much less).
-In general, I have a lot more energy (still comes and goes).
-The Lymph glands in my throat continue to decrease in size
-My light sensitivity is decreasing All in all, herxing very tolerable and worth while to get well.
Feb 7th, 2006:
In looking back at earlier posts,
-I have not had any night sweats since shortly after starting the MP.
-I sleep much better than before and have insomnia very occasionally (prior to MP...this was a fairly regular occurance).
- lymph glands have decreased a little in size
-I continue to be less sensitive to the light.
-I have very few days of "brain fog" and most of the time,
-I feel mentally "sharp" (not always but more often).
Although going slow, I continue to feel I'm moving in the right direction.
Mar 1st, 2006:
A couple of worthwhile items to report.
-My Vit D,25 was measured at 12...which is cool.
-I do seem to be having more energy. My wife has commented about that (her basis is that I seem to be able to stay up later and watch tv shows with her than before). I have some periods where I feel very mentally sharp...which is nice.
Jun 8th, 2006:
-The most noticable change is that I've had some increase in energy.
Enough so that I've been doing some projects around the house and
periodically doing very light exercise (walking dogs 1.5 miles after dark, 5 min on a low Total Gym setting, etc. no vigorous exercise for sometime yet.
-My lymph glands in my throat have continue to diminish but very very slowly.
I realize this MP experience is probably going to be a 3 year experience for me...not an 18 month one as I'd originally hoped.
-my intolerance to light is decreasing...I've been able to take my glasses off to talk to people at work (in my pretty dark office anyway :-)).
-I have had less aches in joints and have not had the "stiff" feeling in my legs/calves in quite a while.
I'm not experiencing as much upper hip/lower back pain either and
-much less brain fog.
I think I'm pretty normal as far as what I can and can't do. Enough that if I didn't wear the NOIRs, folks would not know I had Sarc or was on the MP at all just by meeting me.
Aug 4th, 2006:
-I have gotten to the point that I will go out a couple times a week for a reasonably fast paced walk (3.5 MPH or so) for about 1.5Miles a couple of times a week (at dusk) with no particular ill effects and maybe 1 time a week on the total gym for about 10 min.
-I've felt well enough to do a couple of pretty major projects around the house w/o impact.
-In general, with the exception of still avoiding the Sun Light....I have my life back.
-My life is pretty much back except for being able to spend time in the sun and wear "normal" summer clothes (and NOIRs). I plan to do some experiments in Oct (after cooler weather) outside for extended periods (I want to try Golfing again) so I'll know more then.
-My lymph glands in my neck still are swollen but slowly (not straight line...jumps around) getting smaller over time. I'll go several weeks w/o noticing progress there and then one week I'll notice some are a bit smaller or maybe I can no longer locate a particular node.
-My dentist said what's left of my gums are in great shape and he is astounded how quickly that turned around (Now if ONLY I had gotten on the MP before I allowed them to cut away most of the gums around lower molars :-().
Making slow, steady progress and no longer in a hurry!
Dr. Marshall, Barb, Lottie, Meg, Belinda, et al. have my greatest appreciation and admiration....this protocol works.
Hang in there, it keeps on getting better and better!
December 2006:
I did paint the "last" room I'm intending to paint for a month or so and got it all back together again. ..it is nice being able to pretty much act reasonably normal, although my wife claims I never acted normal, even when didn't have TH1 symptoms .
I've slowly increased exercising. I'm up to about 25 min on the nordic track 3X per week (slow tho) and about 15-20 min of total gym about 3X per week.
All in all....excellent progress.
Robertrr: MP for 18 months: results just keep getting better and better
see
Robert R's progress
Robertrr: an account of MP for members of a sarcoidosis support group message board
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Robertrr: Biopsy Sarcoidosis Feb,2003. lymph (lung, throat, abdomen); Oral, bone marrow: NOIRs and avoid light; 7/1/2005; Ben Q6H 7/12/05; Mino 7/26; D 1,25=44 & D25=28 as of 7/12/2005; 1,25=25 & D25=26 as of 10/05; D25=12 as of 2/06; d25=12 as of 5/06
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Aussie Barb
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Posted: Tue Sep 12th, 2006 02:28 |
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melinda: LYME: Wanted to post a progress report to encourage all newcomers and any of those thinking about beginning the journey to wellness. I am coming up on the two year Anniversary of MP at the end of Aug.
Aug 9th, 2006: wrote:
Hello All
I got out my original list of complaints and was amazed at how many are gone and how few are left to eradicate. I am in the third phase and am almost at the max of that medication combo. I had Lyme relapses since the 90’s, the most disabling complain was back pain, muscle stiffness and muscle weakness. At one point in the past I felt like I was headed to life in a wheelchair.
I am making this a bit detailed but I hope it helps someone.
Before: Back pain. MRI showed bulging discs, Docs sure it was not from Lyme. Had trouble putting on my own pants.
During MP: Herx increased pain at first then slowly disappeared
Now: Pain gone, slight stiffness when herxing. Need repeat MRI to prove discs are no longer swollen.
Before: Muscle weakness and fibrolmyalgia type pain. Many sore points. Muscle spasms.
During: Herx made some days very achy and uncomfortable. There are areas that became painful and even swollen. Knees, wrists and even fingers. As areas of inflammation were discovered, reactions occurred and then cleared. At times hands very shaky. Feelings of hypoglycemia.
Now: Strength is almost normal except during a herx . Doing water aerobics. Some stiffness in muscles and discomfort in shins and ankles still present. One digit on lt hand still stiff. Stamina not 100 percent , but improving. Must be careful to eat regularly as I get low about 4 or 5pm.
Before: Frequent headaches, lt earache and wet ear feeling, lt cheek ache.
During: all worse then cleared. Included increase discomf in jaws and teeth.
Now: Occ headache during herx, No earache, no cheek ache, tension in upper jaw and teeth gone.
Before: Exhausted feeling in my chest for yrs. Like all energy was gone and at times felt like a panic attack. Easily overwhelmed by noise and socializing.
During: Symptoms increased and occ to the point of pain but no arrhythmias. My GP did order heart exams because I was having real chest discomf , heart tested fine.
Now: I have not had that feeling during the last few herx cycles. Thank God.
Before: Digestive tract. Sensitive gut, irregular, colitis attacks since childhood
During: I had increased times of distress, gas, bloating, colitis attacks, nausea, indigestion etc etc
Present: Better than I can ever remember. I don’t have heartburn and all those other problems. I do occ get more gas with a herx but very minor now.
Before: Always had slow metabolism, but tests didn’t show anything.
During: T3 dropped and took a small amt of thyroid replacement. Then went up a bit like a rebound. Dr Marshall warns of this.
Present :I am off replacements as tests are normal. I still am over wt but am hopeful as I increase my exercise I will drop the lbs. I was always sensitive to cold and wore socks to bed. Now I am sensitive to heat but can go to a movie or restaurant without a sweater.
Before: Sleep disorder, insomnia and then wanting to sleep to late in morning.
During: Needed help of sleeping med but even that didn’t help some nights of herx. Also had numbness in hands and arms at night
Now: I don’t sleep as well one or two nights when I herx. Overall huge improvement.
Before: Twitching of fingers, toes, cheek and when really ill with a relapse large muscle contractions in abdominal wall and thighs.
During MP: Brought out some twitches, but mainly contractions of the bowel caused increased motility and diarrhea. And occ herx and abd pain.
Now: I had one herx a few weeks ago where my thigh muscle was jumping but have not had many twitches lately. I do get increase bowel motility when I herx. No muscle cramps.
Before: Eye sight failed when I got Lyme.
During MP: Increased light sensitivity, at times unable to use computer. Eyes gritty, irritated and in general sensitive. Tearing easily.
Now: Not very sensitive but still protecting them from light outside. During herx notice tear more easily.
Other things I have had at times during herx is low grade fever. Flu like cold symptoms, runny nose. Coughing and mucus attacks.
Skin: Very red knees, shins and feet after showering. This is slowly fading as I heal. Itching shins. Itching scalp and dandruff. Bad B O
During: Neuro dizziness, poor balance, and mood problems.
Now: Neuro herxes are more obvious. Now that I don’t have the body pain to blame for bad moods , I know that a few days after I ingest my combo of meds I have a few days of sleep disturbance and a feeling of irritability that is based on nothing other than a herx. It is very predictable. During those days I also have foggy brain and my balance is poor. My stamina is weaker and overall I don’t feel as well. I still have increased mucos during herx and a runny nose.
Well after reading this I realize I sounded like a real mess. But I want you to know that this disease came on slowly over many yrs, getting worse and worse, but my coping mechanisms got better too. I didn’t really know how bad I felt until now that I am getting better. Many of you will think that you aren’t as sick as you are, because you are still getting around and coping like I did for yrs. I was never bed ridden, I always tried to force myself to function and I didn’t look ill. But I was slowly losing my life to a chronic disease.
The MP has saved me from that fate. It is not a quick fix but it is a cure. I think about it like a process of purification. Slowly our body is seeing the pathogens and killing them and then our bodies need time to rid itself of the accumulated toxins. That’s why we feel worse during the Herx. We have to be patient and sometimes it’s frustrating. But if it didn’t work and we didn’t see ourselves recovering we wouldn’t be here doing the MP.
During the last few years I did take holidays from the MP at times. I traveled and had a fairly normal life. You are in control of how much you can handle. If some months you want to have less of a battle that’s OK. Slow and tolerable is OK. In the end you are a winner, you get your life back. So I am continuing this journey and will keep you posted.
Thank you Dr. Marshall with all my heart.
Sincerely, Melinda
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Lyme99/parathyph86/hepB73/lowthyroid 12/04
Aug D25-32 D125-58.Jan D25-23 D125-58 Mar D25-25,D125-50 Dec05 D25-24 D125 32.Started MP/8/25/04 Benicar40q6/FullMP 9/20/04 2nd Phase Feb12,04 3rd phase 3/6/06 noirs/activella/ambien
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Aussie Barb
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Posted: Tue Sep 12th, 2006 02:36 |
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Moxie: CFS 24 years - FMS: ....23 years of illness is slowly slipping into the past and my new life is emerging. Great stuff
wrote Jul 27th, 2006: I have continued to do well on Phase 3.
-My "air hunger" has really settled in the past 2 weeks and my energy levels are definitely improving.
- I have now lost approximately 9kg in the past 16 months and this is truly amazing as I have just not been able to shift any weight in the past few years.
My D levels are still high but I am not going to stress about them.
I actually met up with a fellow MPer recently and of course, we instantly recognised each other!! Big hat, glasses and gloves.....it was great to meet with a fellow alien. We had heaps to talk about and will catch up again shortly.
So all goes well as I hit 60 on Monday. 23 years of illness is slowly slipping into the past and my new life is emerging. Great stuff
Thanks everyone
Aug 10th, 2006:
In the past couple of weeks have caught up with some friends that I had not seen for quite some time. (60th birthdays do that) Three of these are friends I have only known since my illness (20+ years).
-Everyone of them commented that I looked "the best I have ever seen you"!!!
-and the other comment was "your hair looks so healthy"!!
-So not only do I feel much better, I obviously LOOK much better. Oh what a feeling.....
-Am certainly doing much more in my life and experiencing much less pain. My air hunger continues to be almost not there - yippee!!
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CFS 24 years - FMS. Benicar 4 daily - Phase 2 started 16/5/05 - Phase 3 started 10/5/06 Metformin 500mg 1/2 bd. Vit D 100nmol/L (41.6) 1,25 D 61nmol/(
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Aussie Barb
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Posted: Tue Sep 12th, 2006 02:42 |
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Sydney Chris: Review of the last 15 months and more as follows:
Jul 24th, 2006: Checkpoint update..
Symptoms / % Resolution
Headaches: 95%
Dizziness: 90% (an MP only symptom)
Light sensitivity: 90%
Tinnitus: 95%
Sinus congestion: 100%
Sore throat: 100%
Brain fog: 70%
Unrefreshing sleep: 90%
Joint stiffness: 100%
Localised swelling (fingers / feet): 95%
Muscle weakness: 95%
Myalga / fibro myalga (legs in particular): 90%
Flatulence: 80%
Bloating: 100%
Heart palpitations: 100%
Sluggish digestion: 95%
Sporadic lymph node swelling: 75%
IgG dependency: 70% (injection interval has increased from a 10 year average of 14 days to 22 days since starting MP)
Poor energy levels: 75%
Some of these symptoms had dropped off very quickly after starting MP, most of them have faded as my level of herx has diminished and my underlying health has improved.
Have been completing up to 30 minutes of very moderate exercise 2 - 3 times a week, regularly for the past 5 weeks. This is highly unusual.
ATM am feeling as good as I have in over 20 years. I do have a surging energy which is a little confusing, but refreshing after such a long absence.
Am hoping I will not revert to my former energy levels as the dosages increase and can continue to just get better and better, but am prepared for a temporary reversion if it occurs.
14th September, 2006:
Noticing that I am sleeping much deeper over the last couple of months and waking on occassion, very refreshed. This hasn't happened for some 20+ years..
23rd Oct, 2006:
Exercise tolerance has increased. I would categorise myself at this stage as certainly getting much stronger, but still without any real endurance / stamina.
I am immeasurably better than I was 18 months ago when I started MP, and thus far this is a success story that I am happy to share on the basis that it would hopefully give some encouragement to other members...
November 2006:
Currently I am as well as I have been for 20 years.. without a doubt. I am looking forward to greater things.
Best to all..
Chris
July 2007:
My PSA readings were closer to 8 or 9 (well into the cancerous ranges) early on in MP... and as you do I had the biopsy's and all sorts of alien probes with no adverse findings.
Over the past year the PSA level has dropped from these 'out of range' readings to well within the safe zone. My Dr while recommending the investigation for safety's sake, was confident it was no more than the prostrate (being just another gland) that was inflamed by CWD's, before MP resolved the issue over time.
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Chris: MP from 16 Mar05. IgG deficiency. VitD ratio 2.8:1 (177/63), Votum Q6h, NoIR's, Vit D, sunlight, PhII-16 Jul. Ph III 27 Nov05. Mod PhII Jan 06, Feb 06: VitD 25OH 6.8ng/ml, 1.25Di 18.8pg/ml. PhIII from Apr 06
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Aussie Barb
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Posted: Tue Sep 12th, 2006 02:51 |
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AmyEliz: RA: my 'positives'.... I do feel good, even with two jobs.
Aug 18th, 2006: .
-I have been off all medications given to me by my Rheumatologist since Feb '06. -I have never come close to any of the pains prior to starting MP (Very strong sharp pains- pains in the joints so bad that I couldn't sleep - pains) . Just being free of the harsh medicines I was taking is great strives forward. Most of my aches and pains have been tolerable.
Overall, I am doing well. I wish all the best for everyone.
Aug 20th, 2006: Good news! I have not had any MVP (chest pains) in a couple weeks.
AmyEliz
January 2007:
I know I am getting better! I still have never come close to the pain I had before starting MP. I know I am killing the bacteria.
I am working two jobs with one day off a week!!! I do feel good, even with two jobs. I still believe there is definite, swifter results for those who start MP in the early phases of any illness.
Carol wrote: "I had lunch with Amy last week. She looked great! I couldn't believe it when she told me about her work schedule. One of those jobs she mentioned is physically demanding and keeps her on her feet.
But the real piece de resistance was when she playfully jumped up and down before she got into her car to leave. Wow, was I impressed!" <<<
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AmyEliz: RA(3-05 MVP(1981) Age 41. 1-25D=36 25D=33 Avoid light & D NoIRs| comm Beni 4/28| comm mino. Started Phase two 7-3-06
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Aussie Barb
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Posted: Tue Sep 12th, 2006 02:55 |
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Chris: Sarcoidosis: 20 months later ... and 20 months better.
Member in Phase 3
Aug 15th, 2006:
More endurance, less fatigue; but it still comes and goes with the abx & herx. I'm taking the stairs a lot just to stay away from the skylight by the elevator at work.
Intestinal problems are just about gone; downright normal without the abx-caused herx.
No more blood sugar troubles;
Joint pains and stiffness just about gone (and I've dropped doing the exercise to keep them loose ... they just don't stiffen up any more.)
Triglycerides are cut in half. The lab forgot to do the HDL check last time, but that'll get checked before the next dr appt.
Incipient thyroid problems (Wilson's temperature syndrome(?)) are gone. I can now wake up, get up and move with purpose within a few minutes, rather than taking 30 minutes to an hour before I so much as pour a cup of coffee without spilling.
The depression & mental fatigue and fog are gone; or mostly gone. Certainly better than I've felt in years. I feel that things are still going to get better for a while, so it's a bit hard to tell where cure ends and hope begins, but I've had so little practice with hope over the years that I'm sure it is 95% cure.
I'm also sure I've forgotten some of the things I've listed as symptoms along the way. Tinnitus still bothers, but the dry eye and dry mouth are on the way out ... I'm still not good (and never was, likely never will be) at keeping lists.
December 2006: Latest great news...
One of the things going bad 3 years ago was a rising PSA value. I don't have the original numbers, but the value is now 1.7 and back in normal range. I know that PSA isn't terribly reliable, but I'm happy with this news.
Coffee is starting to keep me awake at night. I've no idea what has started working, but I need less caffeine now to keep me working.
There is a marked qualitative difference in the time between herxes. I'm up, active, and somewhat optimistic. Folks who don't see me often have commented on the dramatic difference in appearance.
April 2007:
I've been on the MP for close to 3 years, and it works. Pre MP, my cholesterol, triglycerides and PSA were not good. The cholesterol and triglycerides actually went up a bit before starting down. The PSA was in the caution area.
The diabetes is gone, the eye troubles have stopped, the LDL is down 40 points, PSA is back to normal, thyroid symptoms gone, and the IBS is only there as a faint shadow of it's former self on high herx days. Strength and energy are returning. The MP works.
see also:
Chris: sleep apnea, energy levels, muscles improvements.
Chris: Your children are more at risk from associating with you and your sarcoid than they are from a few days in the dark.
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Chris: sarcoid diagnosed 1991, probably started 1983
D25/1,25: Mar04 17/80, Sep04 12/50, Nov04 8/23, Jan05 9/39 May05 6/27; in phase3; fevers, muscle pain, tinnitus, depression, mental-fog, IBS, carpal-tunnel, fatigue
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Aussie Barb
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Posted: Tue Sep 12th, 2006 03:15 |
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alayne: CFIDS FM: The following is a mix of improvements experienced since starting the MP as well as those experienced in my month-long semi-hiatus.
May 15th, 2006:
Hi All!
This past month has been a marvelously revelatory one! There is absolutely no possible way in the world that pre-MP I’d have been able to do what I’ve accomplished here at my folks. I could barely walk or think straight when I started the MP process. List of Improvements:
- Incapacitating fatigue – I still experience varying levels of fatigue, but thus far, haven’t been bed bound for days as I was pre-MP. Over the past month, I’ve accomplished far more than I’ve done in a very long time! Have had some days of unbelievable stamina and energy and the others have been pretty darned good.
- Severe migraine-like headaches – Haven’t had one since avoiding sunlight and D.
- Low grade fevers and low basal body temp – Daily fevers stopped with the MP and body temp generally hovers in the 98 range now.
- Body/joint pains – Hard FM symptoms gone and only manifest themselves as herx now.
- Dry mouth and eyes – Greatly diminished
- Daily chills and night sweats – Used to be pretty constant, but have only had one night sweat in the past couple of months.
- Bruxism – Gone! I wore a super hefty mouth guard after years of clenching so hard my mouth bled. I’ve not worn it for at least two months and all’s well!
- Dental – Gums have gotten loads better and I’ve not had a toothache or something rotten happen this whole time, which is amazing to me. I keep waiting for some major dental herx to hit, but so far it’s been negligible (have 15 root canals, strong propensity for jawbone infections, etc.)
- I can breathe through both nostrils for the first time in my life!
- Post-exertional malaise – I don’t need to rest for days after exerting myself. Granted, I’ve learned to pace myself MUCH better and generally know when to stop, but it used to take me five days to recover from a few hours of teaching (I’d be flat on my back in bed), and a day to recover from showering. I can now often keep busy for a few hours to a day or days and recover quickly (hour to a day!
- Esophageal spasms – Gone
- Foot/toe cramping – 90% gone
- Chronic dandruff and dry facial skin – 99% gone.
- Feet edema – Started swelling a few years ago. Haven’t swelled much at all since starting the MP, AND they didn’t swell more than a tiny bit on the flight to folks (they’d really balloon from flights, and it’d take a couple of weeks for them to go down).
- Surprising improvement - Right ear wasn’t painful at all during my flight and adjusted just fine to the pressure changes for the first time in 20 years! Damaged the ear drum about 20 years ago when flying with a head cold. It hurt fantastically after that every time I flew and couldn’t adjust on its own to the pressure changes.
- Lump in throat – Totally disappeared for Phase 1 and reappeared as a little herx for a couple of days on Mod Ph 2.
- Weight changes without changes in diet – Dropped from 135 to 112 by December, but since then have gone back to 125 and am holding!
- Cloudy urine - Gone
- Sensitivity to heat and cold – The extreme sensitivity to cold has greatly diminished, and I’ll know about the hot weather soon enough. Feet and hands not frozen to the bone any longer.
- Driving – Had to stop driving completely for two months because I couldn’t handle it. Then slowly worked my way up to three miles maximum for a few months. This last month I drove a couple of hundred miles in unfamiliar areas and did very well!
- Vision - Don’t need reading glasses or magnifier any longer! Can’t believe it! Don’t have to hold a book at arm’s length, don’t have to tilt my head up to read! I can read straight on, and also print about half this size without even squinting! Seriously!
- Left shoulder is no longer painful and has full range of movement. It hasn’t herxed since mid-March! This shoulder was never the same after I injured it in a car accident 3.5 years ago.
- Thyroid, DHEA, Pregnenolone and Progesterone levels back to low normal-normal levels! Stopped thyroid supplementation within a few weeks of starting the MP, DHEA & Preg about 4 mos ago and Progest. & Testost. about 3 mos ago. Menstrual cycles have stabilized for the first time in years.
- Alcohol sensitivity has diminished greatly. Not that I’m knocking back the booze, but can have a glass or two of wine without any noticeable effect. Not so sure I can be really proud of this one though.
Brain Fog- Still have quite a ways to go, but have definitely improved!
- Short term memory and focus – They’re still not great, but much improved over the past few months. Am lately beginning to take interest again in world events and can also remember much more of what’s going on!
- Thought processes, reading and directional comprehension – still cannot read and comprehend heftier academic tomes, but my reading level is greatly improved (from elementary school to some college), I can follow somewhat more complicated plots and conversations, and directions.
- Vocabulary’s increasing!
- Speech and writing can still be quite basic at times, but I’ve had definite improvement over the past month.
- Math abilities still stunted, but better. It takes quite a bit of effort, but I can often add in my head again and remembered how to figure out percentages the other day!
I am so terribly grateful to Dr. Marshall and his brilliant mind and compassion for others, to the experienced and wise Aussie Barb who’s known exactly how to walk and talk me through some of the major hurdles thus far, plus many of the little ones, to Meg for helping me so wonderfully, and Belinda and Lottie for having spoken to me so brilliantly in the beginning, and to those of you who have PM’d me with such amazing support and kindness. I really want to thank everyone here for showing such courage and determination and helping me and others believe on a daily basis that this is the right way to go.
We’re all in this together and it’s just amazing to be part of such a group. Hipporay! -Alayne
November, 2006:
I've not had a single asthma attack since starting the MP,
no longer react to most chemical/pollen/mold exposure,
SOB has greatly diminished,
and it's seldom anymore that I'm "too tired" to breathe.
Alayne posture, healing.
Alayne Summary of Improvements
Alayne: vitiligo disappeared
The Panel on Recovery
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Alayne: CFIDS/FM 6/05:25D-34, 1,25D-69 12/05:25D-22 1,25D-44 Sick 6-11 mos/yr for 20+yrs. Sleep dysf (Xyrem), Neuro probs, Pos for EBV, CMV, C Pneu, Myco Pneu. Body totally fell apart 2005. NoIRs, 9/28/05-Avoid Sun/D, 11/17-Beni, 12/02/06-Ph1, 5/8-Mod Ph2
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Aussie Barb
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Posted: Tue Sep 12th, 2006 03:15 |
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Ames: CFS FMS: Listing improvements: I am not just happy with the MP...I am thrilled. My body is now strong..it can fight my infection. I will get my health back.
Aug 4th, 2006:
If I step back and think about the way I felt closer to the start of the MP and the way I feel now the difference is DRAMATIC. It especially helps that I have recently lowered my dose, and even while I still herx I feel a great deal better..and I'm able to truly realize the progress I have made.
1. PRACTICALLY NO POST-EXERTIONAL MALAISE: Before the MP I lived in a constant state of fear. Something as simple as walking an extra block could make me feel as though I had just "cracked". My body would collapse..I would end up in bed...for literally 2-3 weeks. Now if I push myself a little too hard I have to lay down and rest...and half an hour later..I get up!! The difference is amazing. My body can actually recover from stressful incidents. I sense that I am SO much stronger and it feels strangely normal!
2. CLEAR HEAD: I never realized before getting to this point on the MP how clouded my mind used to be. Living in a fog described me well. I have certainly suffered from the herx in my head...but this may be the area where I notice the most dramatic difference. I literally feel as if someone has taken the inside of my brain and scrubbed it. You would never know from my writing on this site..but my thinking feels sharp, my thoughts feel crisp - I think faster. I can memorize things with ease. On several occasions when my herx has not been strong I have felt a sense of mental peace that I have not felt for years.
3. DREAMS: At the start of the MP and before I started the treatment, my dreams were very negative. I was always sick. Every single night I called out for help and people left me..or I would try climbing a hill with a group of people and get left behind. I contantly told others in my dreams that I was exhausted and that I couldn't keep up. Over this last year on the MP, the "me' I create in my dreams has started to change. I am healthy. I have energy. I do things with friends (and random people!) and I manage just fine. I am no longer sick. I think this reflects the way my body feels at night...it has a new inner core of strength that was never there before.
4. WHERE"S THE FLU?: At the start of the MP my herx left me feeling as though I had a terrible case of mononucleosis. My throat raged, my nose was constantly runny, my eyes watery. I still have herx in my throat and in my lungs but the pain feels more condensed. The feeling of a raging infection is completely gone. I haven't blown my nose in months and my sinuses feel as though they have been aired out.
5. LIGHT SENSITIVITY: At the start of the MP I can still remember laying on the same couch I sit on today and hiding under a blanket while wearing my darkest pair of Noirs because there was one 20 WATT light bulb on in the room. Now, in the same apartment I wear my lightest pair of Noirs. When my herx isn't bad I find I have trouble seeing what I'm writing or seeing well enough to make food. The change is incredible.
6. I HERX BEAUTIFULLY: At the start of the MP, my herx reactions were sluggish. Today my body loves to herx! I so much as touch an antibiotic to my tongue and my immune system starts to put it to use. It feels...like I actually have a functional immune system! This is huge, because I'm not sure it has ever worked during my entire life. In December when my 25D dropped and my herx got much worse it felt like for the first time my body "woke Up" and was able to see the utter devastation that bacteria were/are causing in every organ. Ever since then it has started to fight...and it keeps fighting harder and harder. Cells of the immune system that were once infected have been replaced by new healthy cells ready to attack..and this gives my body a new arsenal to combat infection.
I think that this might be the greatest improvement: For the first time ever my body feels like it has the power to make me well again.
There are many more subtle improvements but I'll mention those later. I feel that if I can improve as much in the coming year as I have in this past year the difference in the way I feel will be incredible.
I do suffer a good deal from herx, but I think everyone realizes that I also fight hard (keep my abx high). i have considered the idea that my abx choices are affected by herx, and maybe they are influced somewhat by an altered state of mind. However I have always been impulsive, fearless, tough...and a risk taker. I love to fight. I don't dwell on the past...I just look towards the future. I know I can put the tough times behind me, and so I am more willing to accept difficult herx when it comes around.
I am not just happy with the MP...I am thrilled. My body is now strong..it can fight my infection. I will get my health back.
26th Sept 2006:
I don't bruise easily anymore.
Also I still find I can rebound from exertion MUCH more easily.
I've been doing some more stretches (very simple)
walking quite a few stairs every day.
I do all my own dishes/shopping/cooking
Oct 1st, 2006
I have been able to do 2 hrs of online work every day, talk on the phone quite a bit, drive to the supermarket and handle groceries, cook all my meals and wash plates etc. without feeling very run down. I’ve even been doing some streches each morning and also taking hot showers and still feel o.k.
Over the last four days I have had several moments where I've thought “wow I feel REALLY good!” I can just sense how much my body has healed. I am so happy! I haven’t been able to stop smiling for the last week because right now I feel as if I’m starting to be able to do so much more, think more clearly etc.
The wonderful part about slowly starting to feel better is that even the smallest events are so exciting. Right now I’m working a data entry job, which in the past I would have found utterly boring. At least for now I can’t wait to start work because it’s great to feel like I am accomplishing something!
see also
Ames Progress Phase 3 update Thanksgiving
Ames: spontaneity and better endurance - yay!
Ames positive advances
AMES re MP A CFS patient's experience with the Marshall Protocol
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Amy: CFS/FMS/osteopenia/severe insomnia Age 24. 03/05: 1,25D-not accurate 25D-40 07/05 1,25D-60 25D-40. Phase 2: 06/05/05 25D:11/05-29,12/05-49,1/06-37, 1,25D-47 06/06 25D-20 Klonepin, Gabitril, Trazodone, Melatonin (all for sleep)Tramadol for pain
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Aussie Barb
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Posted: Tue Sep 12th, 2006 03:30 |
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carol: RA: Summary 22 months into the MP. getting well sneaks up on you. I have to remind myself that I am off nsaids for the first time in years.
Jun 9th, 2006: Prior to the MP, I took frequent, high dose antibiotics for many years to treat RA. Perhaps I killed some bacteria along the way, but now I think the reduction in symptoms I experienced was largely due to the immunomodulating effect that minocycline can produce. This explains why stopping conventional AP therapy and starting the MP launched me into a dramatic downward spiral of symptoms, symptoms I had never had before and did not associate with RA. These symptoms included the following:
- Nausea, abdominal pain and rectal bleeding
- Episodes of low back pain, dark urine and feverishness
- One mouth sore, only one, but it was a doozy. My dentist was very concerned and really wanted a biopsy. I resisted long enough for it to clear, but it left a scar which I can still feel on the roof of my mouth.
- Vivid and disturbing dreams. I woke up crying on several occasions.
- Tinnitus
- Profuse sweating brought on by modest physical activity
- Anxiety
- Shortness of breath
- Paralyzing fatigue (I would lay down and literally not be able to move)
- Gagging/coughing that woke me at night
- Deep tissue itching, especially over my joints
- Escalating eye dryness and discomfort, eventually diagnosed as cicatricial (scarring) conjunctivitis and trichiasis (a condition in which the eyelashes turn down upon the eyeball and produce irritation)
Some of these symptoms lasted just a few weeks, others much longer. The most serious was the eye problem which persisted for many months and left me with eyelid deformity that required surgery to correct. All these symptoms have resolved now except for the fatigue and the tinnitus, but both of these are lessening in intensity.
My light sensitivity continued to escalate well into Phase 2. At its peak, 20 minutes in the car would result in dizziness, weakness and sweating. Now, in Phase 3, light sensitivity has dramatically lessened.
Since starting the MP, I have recovered from “hormone imbalances” brought about by the disease and complicated by supplementation. I stopped taking cortef and Armour Thyroid in Phase 1 and, very gradually, weaned from bio-identical hormone replacement therapy (estrogens, progesterone and testosterone) in Phase 2.
I have overcome the effects of “vitamin D poisoning”. I started the MP with a 25-D in the 30s and it took me a year to get this value down into the teens. My last three test results were 16 (Aug ’05), 19 (Oct ’05) and 12 (Apr ’06)
So how am I doing? At the end of phase 2, after 12 months, I took a few weeks to catch my breath. For the first time I was able to decrease pain medication because my joints hurt less and I could enjoy walking in the evenings and doing some gentle yoga. Phase 3 has plunged me back into the thick of things. None of the systemic symptoms have returned. My joints are the source of herxing these days.
I am 22 months into the MP, and a long way from “well”. This is a hard road. But my responses have been consistent with the MP model every step of the way and this has given me the will to persevere. I need to rid my body of this infection to regain my health and I am closer to achieving this objective today then when I started the MP.
reported August 26th 2006:
Yes, getting well sneaks up on you. I have to remind myself that I am off nsaids for the first time in years, and I'm regularly doing things with my hands (lifting, opening jars, etc) that were not possible just a few weeks ago. I put my daily alottment of vicodin in my little medicine box each morning and lately there's one left over at bedtime which I just carry over to the next day....another good sign.
Carol
from Carol RA summary
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rheumatoid arthritis dx '96...started MP 8/11/04...initial D tests (7/11/04): 25-D=32; 1,25-D=65...phase 2 started 12/6/04...phase 3 started 2/26/06...vicodin daily for pain...it took a year to get my 25D down in the teens...most recent 25-D=12 (4/06)
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Aussie Barb
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Posted: Tue Sep 12th, 2006 03:31 |
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Aunt Diana: LYME: MP for 8 months. I am definitely going in the right direction.
Aug 16th, 2006: I thought it was time to share some of my experiences on the MP with those of you who are starting out.
I now wish I had made a list of my symptoms so I could systematically rule them out as they cleared, but alas I did not.
-I remember one, however, that I haven't had since I started the MP ( that is the right side of my face would droop at least once a week)....(sort of like Bell''s Palsy) that hasn't happened in ages; I am grateful for that.
-Another improvement that is wonderful is I am reading again. I didn't read for 15 years or so...at least I didn't retain anything. Now I'm reading a book a day and loving it.
-I am so thankful that there is at last an answer to my health problems. And so grateful to Dr Marshall and his team.....this website is the best part of it all.
Sep 12th, 2006
-good news: the area of numbness in my leg is starting to get less numb....it feels like it is starting to feel again....also I have had no creepie crawlies since those bad leg herx days.
Dec 2006:
I'm slowly realizing this is a marathon...not a sprint.
Also, since I feel so much better at this coasting level I am able to "see" and appreciate many of the improvements in my health.
My brain is really much more capable right now....I've organized and sent out 50 or so Christmas cards and updated and address book that is 10 years old. (I never could have done this, even a few months ago.)
My eyes were in terrible shape when I commenced the protocol. For years it felt that I had fibers in my eyes....I was always trying to find the culprits and of course, there was never anything there. At one point, my husband plucked some of my eyelashes because I was so uncomfortable....I also started to get small growths on my eyelids and started experiencing floaters. Eye exams revealed nothing but "dry eye".
The floaters in my eyes are gone and have been for a long time...the grittiness is much less and I only need to use eye drops one or two times a day, I no longer seem to have allergies ( I think they were probably never allergies in the first place).
I've been talking on the phone and have been able to keep up with lots of different people.. my wit has come back and I'm able to make people laugh again. I'm not crying all the time, which is certainly an improvement. I'm lighthearted again... something I'd forgotten about.
I'm planning on getting back to painting sometime after Christmas....I've always loved watercolors and oils and can't wait to get back to them....My eyes can see enough now at 30 lux, that I think I can do it. (Colors are all relative anyway)
All in all, I'm very happy at this moment in time.
Now that I know what "deep" sleep is, when I look back on my sleeping patterns for the past 40 years I have never slept deeply, and have struggled to stay asleep. Anthing could wake me up and then I would need a miracle to get me back to sleep.
No wonder I was "wired" and sometimes irritable. I am so grateful for this protocol that I can't say it enough.
Happy herxing to all.
- I have many mornings not wanting to get out of bed because I feel so good.....some of them I realize I actually feel something pleasant ....something good.... I had totally forgotten that there were such feelings. When they come along these days I try to "milk" them for all they've got.
I'm so glad for this protocol...people like us finally have hope again.
January 2007:
I have been on the protocol for a year now....have been sick for 18 years. So many of my symptoms have simply gone away and I am feeling stronger and better practically everyday. This protocol is a Godsend....it works because it is based on science.
August 2007:
I have had many neurological symptoms disappear (due to antiobotic treatment). I still have a long way to go but have definitely experienced more encouraging improvement since I've been on the MP.
I have regained my hearing, my eyes are much less inflamed, numbness and creepy crawly sensations in my leg have practically disappeared, and I am sure there are several other things that have improved that are just not coming to my mind right now. (Oh....no more vertigo, balance greatly improved except while herxing, bad taste in mouth gone, etc)
From this experience I believe the nerves are quite capable of healing once they are given the chance.
March 2008:
I had been sick from Chronic Lyme disease for about 17 years when I discovered the MP.
In the past two months I am really getting excited about my improvements. I am reaching higher ground and feeling better much more frequently....I have days of feeling almost completely normal. I know in the next year or so I will reach total recovery....It is so thrilling. I can't even explain how happy I am.
see also
Aunt Diana: healthy teeth and gums after 3-4 months on the MP
Aunt Diana progress report
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Diana: Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker 2005, 10/1 started light & D avoid 10/12 d-25, D.1,25 32; 11/27 Beni40mg q6h 6/06 D <10; 1,25D 27; 6/11/06 Phase 2
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Aussie Barb
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Posted: Tue Sep 12th, 2006 04:01 |
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KFaucher: Ken CFS: camping trip is a better gauge of improvement than a subjective opinion of how one feels at any given moment.
Aug 12th, 2006: Since I last posted here I have been mostly on break, still on Benicar, sometimes on mino sometimes not. Restarted the second week of July and quickly moved up to where I left off. I then got in one cycle of phase 3 and took a scheduled break for an annual camping trip.
I had been a little irritated lately that there seemed to be little improvement over the last year. Well, it turns out that an annual event is a better gauge of improvement than a subjective opinion of how one feels at any given moment.
I have been going camping each year since 1983, with a few exceptions, with a small group of guys that have all been friends since junior high school. For many years now I have felt much older than the others. My physical and mental abilities had decayed much faster than theirs had. Last year I felt better than previous years, but was still significantly worse off than my friends.
-This year a strange thing happened. They seem to be getting older while I am getting younger! Physically I was able to get through all activities as well as, or better, than they did. I admit I was pretty tired at the end of a 6.5 mile kayak trip, but so was everyone else. (it was against the wind the whole way).
-Brain fog was non-existent. OK, it did take me a couple hours to get going in the morning, but that was mostly hangover. The sun exposure caused no flares, herxes, or nasty symptoms at all. The bottom line is: "Damn! This was a good trip!"
A note on sun exposure: I had a lot of sun exposure. Two days of driving. Two days of kayaking, tubing, swimming, hiking, and generally hanging out in the sun. The only noticeable symptom was red eyes. No brain fog, no fatigue, nothing. Wow! >>
Now when I say exposure, it needs to be qualified somewhat. Although I was out in the full sun, I kept covered up as much as possible. When kayaking for instance, I wore, from the toes up: neoprene boots, upf 50+ full length swim pants with upf 50+ nylon blend fishing pants, a upf 50+ nylon blend long sleeve fishing shirt, a pfd, a SunTamer hat with legionnaires cape. Eyes protected with two pairs of glasses. Face protected with beard and neutrogenea spf 45 with helioplex (good stuff). Oh yeah, sun protective gloves (fingerless). Last year with similar clothing I got slammed with sun reaction.
So now it’s back to phase 3.
Ken
"Do not spoil what you have by desiring what you have not; but remember that what you now have was once among the things you only hoped for." Epicurus Greek philosopher (341 BC - 270 BC)
"It is difficult to say what is impossible, for the dream of yesterday is the hope of today and the reality of tomorrow." Robert H. Goddard US physicist & pioneer rocket engineer (1882 - 1945)
see also
Ken Faucher: Phase 3 update - 2 year progress
KFaucher/ Ken: CFS 20 years: how much better I can get.
KFaucher: CFS: the MP does work! 6 months on the Marshall Protocol!!!!
KFaucher: CFS: CWD and back pain
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Ken: "good days & bad days & going half mad days" J.B.
CFS 20 years 25D=30 1,25D=57 8/2/04; 25D=19 1,25D=48 12/2/04; Avoid Sun 9/12/04, NoIR 10/1/04; Benicar 12/2/04, phase 1 12/10/04, phase 2 4/5/05
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Aussie Barb
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Posted: Tue Sep 12th, 2006 04:08 |
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Ival RA: Member in Phase 3: Here is my little speech I gave at the Los Angeles conference. Let me know if I can help in any way I'll be glad to talk to anyone to explain what you are fixing to go through. It's not all that bad considering the alternative.
Aug 30th, 2006: Finding a doctor to help is one of the hardest things at the beginning. I gave up on the rheumatologist and found a general practitioner to help me. I am not cured yet but I feel I am getting very close.
Hi my name's Ival Meyer
I was diagnosed with rheumatoid arthritis in 2001 with symptoms and a rheumatoid factor of 56. I started down the usual path of going to a rheumatologist where I was first introduced to low dose prednisone, which worked great for about eight months. After eight months my arthritis came back twice as bad. I went on a second around of low dose prednisone which did absolutely nothing.
My rheumatologist suggested immune suppressing drugs, which could prevent joint damage, like methotrexate and Enbrel. Before starting the immune suppressant drugs my doctor gave me a shot of prednisone.
The feeling of being insane is the best way to describe that day. Nothing on the marshal protocol has ever been as bad as that day of insanity. That is when I decided to take charge of my disease.
What I found by researching my disease was depressing. The side effects of the immune suppressing drugs were totally unacceptable to me. Some of the side effects are multiple sclerosis, lymphoma and you are susceptible to tuberculosis and other infections.
The diseases that run in my family are a carbon copy; my oldest sister has multiple sclerosis; one of my grandmother's died from lymphoma and my father is a tuberculosis carrier. That is why I chose this path of treatment
In my research; I found many scientists that believe these illnesses were caused by a chronic infection. The Road Back Protocol developed in the seventies and still popular today uses pulse antibiotics for treating rheumatoid arthritis. Sounded good; better than the alternative; so that's where I started. During that time it became obvious to me that this was some kind of infection.
My results were good on the road back and it slowed it down but it never really brought me to a remission or a cure. During further research I found the Marshall Protocol on the internet and they were going to have a conference in Chicago on autoimmune diseases. Best decision I ever made was going to that conference. This is when I truly learned about my disease.
The hardest thing about starting the protocol was finding a doctor. After six tries and about an inch thick of paperwork I finally found a doctor that would help.
The first two weeks on Benicar definitely helped on reducing the inflammation in my joints and muscles. Within the first three months; I was able to stop all of the NSAIDS. For the past six months I have only needed the marshal protocol medications.
The problem was starting the antibiotics is it does not make you feel better. You have to be ready for a long hard year dedicated to your recovery. When I started the antibiotics my joints were still one of my main problems but I started getting a lot of symptoms like the other auto immune diseases.
I will not go into details on all the herxs that I've had but I've had just about every one of them to some degree. I definitely had a lot of sub clinical inflammation. Some days I would have lung herx so bad you would think I had Sarcoidosis, yet I've never had anything show up on my chest xray .
One of the most important things in my recovery is The Marshall Protocol web page. Whenever I started questioning myself if this was the right path to travel. I would read the posts and all the scientific evidence to regain my confidence.
Your recovery is very slow; a lot slower than one would like but you cannot change the science behind your disease. One day I would be worrying about my hip or my feet hurting and then notice my hands had not hurt for weeks. My ankles were no longer swollen . You just slowly continue to improve.
My improvements consist of skin, muscles, eyes, brain fog, IBS, neuropathy, lower back pain and Raynauds syndrome. All of my joints have healed or improved dramatically. My rheumatoid factor which started out at 56, is now down to 16, I bet it eventually goes to zero.
I caught my disease very early and I am very lucky to have found the Marshall Protocol. I am not going to get up here and tell you that I had deformed hands and they are now straight. My feet show signs of arthritis but they do not hurt any more. I can get up in the morning and walk across my tile floor with no problem that is something I thought I would never be able to say again.
I used to walk like an eighty-year-old man now most of the time I feel like I am eighteen. From what I have witnessed on this protocol. I know this can take me to a full recovery.
The fourteen months that I have been on the marshal protocol has taken me from not being able to work and planning on going on disability to rejoining the work force by the end of this year. It has not been easy it will probably be the hardest thing you will ever do in your life.
Everybody has to make up their mind if it is right for them. For me the decision was easy a lifetime of treating symptoms and getting worse or believing in the new science and a possible cure.
I started in this with an open mind and the termination to find out if this was true. I can honestly say everything that the marshal protocol has predicted in my case has been true. I am well pleased with my recovery.
At 47, I now have a future of living a normal life without the pain and the deformation of rheumatoid arthritis. Trevor Marshall's research and understanding of these autoimmune diseases have definitely opened the door for a fascinating new treatment. I would like to thank him for sharing his knowledge with me; which was allowed me to be in the first group of people ever to walk through that door. Thank you
see also:
Ival: RA: I've got my life back
Ival: RA improvements..8 months ... 1 year....
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Ival: MP 4/12/05/Benicar Q6h Ph1 4/26/05/ 25D13ngml 125D44pgml Ph2/6/1/05 Ph3/1/25/06 diag RA 2001 Male 46 Probiotics
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Aussie Barb
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Posted: Tue Sep 12th, 2006 04:23 |
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murcierashley: Maria: Sarcoidosis: I've come a long way from the woman who was about to undergo bilateral lung transplantation.
Member in Phase 2
Aug 6th, 2006: Life is Good.
In July 2005, I was very excited when I "discovered" the MP. I couldn't wait to start.
The Maria prior to the MP felt old, sad, sick, fatigued, hopeless, and weary.
- Now, I feel young, energetic, happy, and optimistic. I don't dread making the bed, walking up the stairs, cooking, or doing the laundry. All of these things used to completely exhaust me.
-At rehab, I work out on the elliptical on level 4 for 30 minutes and I walk/or ride a bike for 30 minutes at 3 mph.
-In addition to lifting my 2 year old, I lift weights at rehab. I'm loving life again. At one point, just walking across the room was like walking through knee deep mud.
-It's as if a weight has been lifted off of my back.
-I feel like a whole person, not an invalid. It's painful to say, but that's what I had become.
I can't wait to report my progress to my doctor. I also plan to visit my former pulmonologist. According to him, I was beyond any hope and had one foot in the grave. I don't plan on dying any time soon, at least not from sarcoidosis.
A whole lot of people have been praying for a miracle for me to get well. Well the prayers have been answered. Thanks Dr. Marshall and thanks to your wonderful team and volunteers.
Maria
December 2006:
I feel better than I've felt in years. One of my friends asked me to compare how I feel now to how I felt when I was on prednisone. There is no comparison. I'm able to do more now.
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Maria: pulm sarc(Dec 2000) 3L-6L O2 24/7; dyspnea (severe) chest pain cough fatigue rash; 8/05 1,25D-43 D25-22; Ben 40mg/q6h 9/12/05) Mod Ph2-2/2/06; Tramadol(50mg)& Guaifen as needed; NoIRs avd D & sunlight; 8/06 25D-10
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