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Meg Mangin R.N.
Research Team (on leave)
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Posted: Sat Oct 13th, 2007 19:57 |
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coolbeans
There continue to be remarkable improvements in my overall GI function, having no repeat of the sloughing off of sheets of cells in mouth or intense abdominal cramping reported last time. I continue daily BMs with occasional twice daily*, this while greatly increasing commutes for son’s soccer games (university players travel much further abroad for play than high schoolers.) Prolonged sitting for travel such as this in the past would have led to constipation. Instead, I’m noticing a pleasing flatness to my abdominal area making my jeans looser without corresponding loss of weight; pleasing because of the years of bloating I endured. So glad to have this improvement.
Increased sunlight exposure seems to provoke blurry vision (more on this later) and a return of hot flashes or sometimes, just the feeling one is about to happen. Definately not having the insomnia, nausea and vomiting much shorter exposure provoked last year at this time. Still a bit stiff after even short periods of immobility but believe I loosen up quicker and move more easily overall. Parathesia, lower leg edema, pain in ankles and feet have greatly decreased.
I’ve used Tramadol daily for quite some time. I have days of no pain and, on these days, have not needed to increase use of Tramadol despite the doc anticipating I would use more because of work situation, hence prescribed more for PRN use. One morning, my co-worker commented I was walking freely and I told her it was because absolutely nothing hurt. However, the extra Tramadol has come in handy on several occasions. Sitting for those 4 hour commutes to and from soccer games gives me uncomfortable tailbone pain. Night driving, after up to 8 hours outside already, is scary because of blurry vision. I pop 20mg Benicar every two hours in these situations now and the Beni prevents both intolerable situations from occurring.
I was concerned because my driver’s license renewal was due last month. I passed the vision test easily with the use of 20mg Beni every two hours for 8 hours before the test. My new license arrived with a picture I am proud to show. I look at least 10 years younger than the one taken 6 years ago.
I had a lesion pop up overnight on my forehead, resembled a cyst but was on top of skin and kind of scaley. It grew larger for a time and then began to diminish. One day, it just pealed off, revealing smooth skin underneath. My doc is never going to believe this story.
Kidney IP more frequent, occurring at least weekly but doesn’t last more than a few minutes to a few hours at a time. It definitely responds to an inbetweener of Beni. Tinnitus has been almost non-existent for approximately the last two weeks. I’m noticing it this morning on the increase. For some time now, my tinnitus levels have been tied to hormonal changes of menstrual cycle. I’m anticipating this increase to continue despite the absence of a period this month. Sure would be nice if both would just stop altogether.
My house has not been thoroughly cleaned since youngest son left for University. The sad state of affairs was becoming apparent even with the dimmed lighting conditions so I vacuumed stairs and the landing last weekend and several rooms yesterday. In the past this chore caused horrible mid-back pain. Only problem I noted was profuse sweating from the exertion. Boy, I must be more out of shape than I thought!
Emotionally, I am stronger. I had to defend myself in a legal forum and was able to speak without tears, my historic response to stressful situations. I can even get mad and speak my mind without crying. Always hated that; crying when I was angry. Still must pause to find words and express thoughts but I am getting them out there for all to hear. I’m wishing for more resolution of my sinus problems. Maybe my new lack of smell, where once I was famous for my nose, is early IP action. Still have the occasional drippy nose IP action, however, sinuses remain tender to the touch and mold season has given me a couple of sinus headaches already.
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Jan: allergy asthma GERD MCS FBD IBS lichensclerosus RA FM|Mar05 avoid sun/light/D, APmino, Bolle100s |Dec05 25D(12)1,25D(59)|Mar06 2%NoIRS|Jun06 Ph1, SL Beni|Aug06 ModPh2 25D(13)|Jan07 Ph2|May07 25D (4)|Jun07 Ph3|DAILY NON-MP MEDS 50MG TRAMADOL, 5MG DIAZEPAM
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Nothing contained in this site is or should be considered, or used as a substitute for, medical advice, diagnosis or treatment by your physician.
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Aussie Barb
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Posted: Sat Oct 13th, 2007 20:29 |
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Updates:
Jason's Alumni Updates 10 year old: Autism: musings on whether Jason is making progress on the MP and on the theme that a cure for Th1 disease is almost imperceptible and creeps up on sufferers.
patrickburke: Sarcoidosis: What recovery feels like.
Vicki SA's update: ME/CFS: really amazed at my energy levels
juneejohnson: There are sooo many small improvements.
coolbeans progress: Jan: remarkable improvements, and summary.
Alaskan Dave Sarcoidosis Uveitis: playing grand pianos and giving dog sled tours
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Aussie Barb
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Posted: Mon Oct 15th, 2007 19:44 |
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lightomni: reply to Jason's Alumni Updates
Hi, John. I am the parent of another autistic boy on MP (since June 07), Member in Phase 2. Though he is not a bad off as Jason and is in mainstream classes. He is a senior in high school this year.
We are seeing subtle but important changes in lightomni also and not where we would have guessed. He is more willing to interact with us and recovers a bit faster from socially and physically stressing situations. His case manager asked at conferences this past Wednesday if we are SURE Omni was accurately diagnosed. They are not used to seeing growth in these kids, only more successful adaptation and training. The school does know that lightomni is on MP because he must take meds and wear glasses.
Dr. Steve Gutstein would tell you that language is much less important than all the other communication that goes on and that pushing for language can actually hinder true growth. As Jason's brain unclogs he will be able to begin laying down episodic memory and to build neural highways that are underdeveloped now. I would not expect spontaneous recovery, per se, but rather a kid who is now ready to catch up on the development his illness prevented.
UDXmom
February 2008: Progress Alert!!! 6months mark is approaching.
We have hit one of those much-desired plateaus. Omni's energy (adrenal function) seems to have normalized dramatically. He feels more alert and awake in the morning, has energy throughout the day, and becomes sleepy and tired in the evening.
He has been regularly inviting a friend over and is developing a mutual give and take relationship. I have seen emerging motivation and skill to participate in this dyad, as opposed to his previous interest in groups focused on highly motivating (gaming) activity.
Lightomni Aspergers & Chronic Fatigue
Interview with Doreen V. - Autism, ADHD depression, severe anxiety, CFS
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LightOmni: Aspergers/PDD-NOS/ ODD/ Anxiety/ hypothyroid/ adrenal insufficiency/ Obesity::Started MP 6/9/07,Benicar 40mg q6hr; started 75mg mino 7/24/07 q48hr::20ng 25-D/ 40ng 1,25-D::NoIR's, avoiding light/ avoiding D foods
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Meg Mangin R.N.
Research Team (on leave)
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Posted: Sun Oct 21st, 2007 01:47 |
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[filelink]
Meg's success story
Dx: Sarcoidosis with unilateral tibial neuropathy (nerve dysfunction) muscle atrophy, fatigue, joint pain, depression, acne, scalp lesions and many other minor symptoms
My illness presented with unilateral tibial nerve damage including altered sensation, severe calf muscle cramps and severe atrophy of my left foot extending up to my midcalf. I walked 2 miles every day in an effort to improve the strength in those muscles to no avail. The atrophy was gradually getting worse due to continued inflammation along the tibial nerve.
Numerous doctors at the Mayo Clinic in Rochester, MN found no cause for the tibial neuropathy noted on MRI, EMG and nerve conduction tests. But my neurologist suspected sarcoidosis. If I hadn't had some tiny nodules on chest CT scan, he would never have made the connection. Even so, all my systemic symptoms were completely discounted as being irrelevant.
I began MP in December 2002. The Marshall Protocol provided the therapeutic probe that evidenced bacteria-induced inflammation of the nerve with an increase in symptoms due to the immune system reactions. The waxing and waning of symptoms reassured me that something was happening even before I could notice any improvement. This was a slow and painful process as the nerves and muscles reawakened.
As the inflammation has very slowly subsided, the muscle mass has increased and the toes that were immobile now have almost normal movement. My left foot and leg are still slowly improving in strength and my left toes are no longer clawed. They are still weak but pre-MP I couldn't move them at all because the muscles were so atrophied.
Leg cramps that were severe and nightly occurences are now rare. Leg strength still waxes and wanes: sometimes they feel fine but other times they feel either like 'jello' legs or lead legs. The numbness in my foot no longer feels like I'm walking on a rock. Now, it's more like a pebble or just feels like my sock is bunched up when it isn't.
These improvements can only be the result of decreased inflammation in my tibial nerve.
As nerve function returned I experienced various intensities of muscle cramps in all affected muscles, increased numbness and shooting pain in my foot. But I celebrated each pain and ache as they waxed and waned. And when it became evident that function was returning, I became convinced that I would eventually get 100% function back even if it took several years. My Mayo neurologist acknowledged improvement but would not support the MP.
It's taking a long time for my nerve damage to completely resolve. Nerves are also poorly perfused by blood and I suspect that this inflammation has been there many years. With that in mind, it isn't surprising or discouraging to me that it may take years to completely eliminate the inflammation and resolve all symptoms. Some people are satisfied with less and that is okay too.
I have every expectation for a full recovery but I expect it will take awhile longer. My foot was numb for years, so some of the damage may be permanent. Time will tell.
Many other symptoms such as depression, fatigue, photosensitivity and joint pain have completely resolved. Some resolved quickly and some took a bit longer. All other symptoms are significantly improved and do not interfere with function.
Far from being discouraged that I still get mild immune system reactions, I consider it a stroke of luck to be able to tell where previously undiagnosed inflammation was hidden.
When you consider the fact that I had symptoms for decades, a few years is a blip in time as my medical condition slowly improves instead of slowly deteriorates.
I check my blood pressure occasionally. It has been as low as 70/52 while I was working and I felt fine. The dizziness experienced early in the protocol has resolved completely while B/P remains low.
January 2007: About five years ago a massage therapist pointed out to me that my cervical spine felt very odd. When I asked my PCP, she said it appeared to be a 'curvature'. I had no symptoms at that time and I don't believe I've had this curvature all my life.
A few months ago, I had a period of severe spasms involving my left, anterior neck muscles. Lately, I've had intermittant muscle pain (sometimes severe), involving the muscles of my left upper back, neck and shoulder. Both these symptoms did not occur pre-MP.
I believe these muscle spasms indicate that the curvature in my cervical spine is slowly being resolved. And the bones in the back of my neck do feel less odd to me. 
February 2007: I've not had a clear complexion since pre-teen days. The news is good though. I'm happy to report that after years of waxing and waning with immunopathology, my acne and scalp lesions are now almost totally resolved. Because it took so long, it was sometimes difficult to believe that the MP was the answer, especially when my face looked like a teenagers with wrinkles.  So hang in there and don't give up during the rough times. These CWD bacteria have been with us a long time but they can be defeated.
August 07: A couple years ago, I was positive I needed a new desk chair for computer work because my tailbone was so sore. Frugality caused me to delay this purchase long enough to realize it was immunopathology. I am still using the same chair with no problems now.
You can add me to the list of people who have experienced resolution of depression. I had suffered from mild to moderate clinical depression for years. I was flabbergasted when it resolved after about six months on the MP. This was completely unexpected and continues to this day despite a few emotional situations that have tested this 'cure'.Last edited on Mon Oct 22nd, 2007 22:27 by Meg Mangin R.N.
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Nothing contained in this site is or should be considered, or used as a substitute for, medical advice, diagnosis or treatment by your physician.
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Meg Mangin R.N.
Research Team (on leave)
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Posted: Wed Oct 24th, 2007 05:30 |
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 KFaucher
I am doing great. No problems. Full dose of the basic phase 3.
Symptoms: Mild fatigue, very mild brain fog, for part of the 10 day cycle. The rest of the time I feel great.
I recently read some of my old posts. It really put things in perspective. My worst symptoms now would have been good days last year. When I watch Halloween movies this year I may still cheer for the Zombies, but only because I am perverse, not because I empathize with them.
This spring and summer I managed to control the abx levels to maintain only very light symptoms. I was able to be very active this year. Actually had a fairly normal life. There was not a single instance of planning an activity and then feeling to sick to do it. I did lots of kayaking/fishing, including a 9 mile trip 2 weeks ago. I have been steadily losing weight, 5 pound every six months. I don’t think I have missed a day of work due to symptoms since last winter. I did miss a few days due to eye problems (as in "I can’t see being in an office on such a nice day!").
I don’t surf the "sick forums" much anymore. I will check the MP site every day or two, but I don’t read that many of the posts. Other sites I might check every week or two. In short, illness is not a big part of my current life. So if I don’t post for a while, it’s because I am doing well.
Now I have increased the abx to full dose. My worst days are annoying but not a big deal. I will stay on this combo until I keep forgetting to take the pills. Then I will switch over from Clindy to Bactrim. And then the rest of the combinations. I am not real concerned about it.
Ken
"Two roads diverged in a wood, and I--
I took the one less traveled by,
And that has made all the difference." Robert Frost The Road Not Taken
see also
KFaucher/ Ken: camping trip
KFaucher/ Ken: CFS 20 years: how much better I can get.
KFaucher: the MP does work! 6 months on the Marshall Protocol!!!!
KFaucher: 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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Nothing contained in this site is or should be considered, or used as a substitute for, medical advice, diagnosis or treatment by your physician.
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Meg Mangin R.N.
Research Team (on leave)
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Posted: Mon Dec 24th, 2007 16:39 |
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Scott H. Summers
Member
Sarcoidosis with cardiac arrhythmia requiring AICD.
As a reflection on the season, I have to say what a blessing it is to have found the MP! Last Spring I was nearly dead...I was having some very bad arrhythmias, and my heart's ejection fraction was down in the teens...obviously due to inflamation. Docs all wanted to 'go to the next level' with the medications.
Since I've been on the Benicar, my arrhythmias have all but gone, I've had no 'therapies' from my AICD, and while I haven't had my EF measured since, I'm feeling pretty well in that department. It's hard to overstate my enthusiasm for the MP, as just a few months ago I had an illness that was untreatable, and now am on the road to recovery...nothing short of a Christmas miracle in my book.
I tell everyone that will listen about the MP, because as 'rare' as sarcoid is, it seems that everybody knows somebody with an autoimmune disorder. Spread the word...
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Scott: Phase I (08/12/07 Benicar 40mg Q6H; 12/15/07 Mino 50mg QoD | Dx: Sarc 1996 (Mediastinoscopy), pulm, cardiac | Sx: arrhythmias, fatigue, dyspnea | Other Rx: sotalol-120mg | AICD placed 2001 | NoIRs 8/21/07 | 12/15/07 25D 7ng/ml
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Nothing contained in this site is or should be considered, or used as a substitute for, medical advice, diagnosis or treatment by your physician.
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Aussie Barb
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Posted: Tue Dec 25th, 2007 02:17 |
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dimmed wit
Member in Phase 3
As an example of improvements, pre-MP I slowly rode my lawnmower around my bumpy yard for an hour while sitting on 10 inches of foam. Even that would take me at least a few days to recover from the aches and fatigue. This fall I rode around at higher speed with no foam pulling a leaf sweeper for over an hour on successive days with no significant effects. ~dimmed wit (Roy)
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Roy: "CFS"1970; started MP 6/04,Phase 3
Benicar 40mg Q6H, magnesium
12/07 25D<4; 1,25D 45
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Aussie Barb
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Posted: Tue Dec 25th, 2007 02:21 |
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Linda Lou: Sarcoidosis
Member in Phase 3
Oct 18th, 2007:
I am happy to report I've been moving along in the Protocol. I had another CXR about two weeks ago with another improvement noted. My pulmonary doc says I only need to see him every 6 months instead of every 3. (He keeps saying "I might have something here"....no kidding!)
I have been working pretty much full time. I still need to get a LOT of sleep and sometimes go to bed about 7:30 or 8 pm and still sleep till about 7 (or even 8 am). I do still experience the immunopathologies (right about day 3 to 6 as someone mentioned it would happen) and sometimes it is a response my body has not had and consequently I will be fooled as to what is really happening. But, once I think about it I realize what is really going on. I simply shorten the time between the doses of Benicar and within a day the problem eases. I sometimes do take Tylenol (or get a chiropractic adjustment, or have an accupuncture appt. which does help with pain.) MY functional status is so much improved I can hardly believe it!
It is coming up on a one year anniversary that I've been on the MP (11/8/06) and, at that time, my pulmonary doc said I had end organ damage occuring and I HAD to start treatment. I was really sick then too. I knew it and felt pretty hopeless. The sarcoidosis was rapidly and aggressively progressing at that point. I was on 02 24/7 and was a physical and emotional wreck. I had almost died in September from a GI bleed that was a side effect of pain medication after my surgery in August. Thank God my daughter had found the website and I had already spoken to my family practitioner who'd indicated she would be willing to supervise my treatment. I rejected the standard treatment and began the MP three days after the pulmonologist appointment. Thank you Trevor for your work.
So, I am ready to move on to Phase 3 (in about another month).
Linda Lou
January 2008:
Last Friday, 12/28 I had a follow-up appt. with my pulmo doc. He said, "Well there's no doubt about it, you're better. Now whether it's from the MP or just a remission, the medical world will quarrel about that for years to come. But you are undoubtedly much better" I am delighted, to say the least, because he is a very cautious man. I do have to continue seeing him as long as I am on the protocol (every six months now) but that's OK. He asked how long I will be on the protocol and I had to confess I'm not sure how long that will be, I've just been focusing on getting to this point so far. And then, he was actually READING some of the material I'd brought him to find out. (He usually only 'skims' the information.) What a delight!!!!!
Well, that's all I have to say except for a HUGE thank you to Dr. M and all the moderators and staff. This is a good success story and I will post on that forum in order to encourage others to go for it. So much of my life is changed for the better, I can hardly believe it! 
Linda Lou
May 2008:
I can't believe I will be leaving in about a week to go to Japan. This has been more than a year in the planning because last year at this time I could not imagine taking on a trip of that magnitude. To even think of it exhausted me! And now look at me, going for it !  Thanks for everything.
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Linda Lou: DX: DM2, HTN, Sarc 2/06| lisinopril, levothyroxine, Celexa, Avandia, lasix, prilosec, Serevent disk, mag ox, O2 at night.| 5/06: 1,25D-24 25D-11; 2/07: 25D was 8.8| MP start: 11/8/06 NoIRS avoid light
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Aussie Barb
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Posted: Thu Dec 27th, 2007 08:26 |
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Update:
Vicki SA: ME/ CFS Phase 3 update. 2 year anniversary.
Shamutooth Sam: MCS, CFS. able to take control of my life again.
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Aussie Barb
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Posted: Thu Dec 27th, 2007 20:28 |
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mike9a
Member in Phase 3
Several of my family members remarked that this is the best they've seen me in all these years I've been sick.
Mike
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Mike: Chronic Lyme/CFS/Stroke; initial D tests Jan 2006 25D=16ng/ml 1,25D=55pg/ml, Sept 2006 25D=less than 4ng/ml 1,25D=40pg/ml; avoiding light & D, wearing NoIR's; Benicar 6/21/06 40mg q8h; Mino 10/5/06 100mg; non-MP meds Doxepin, Prosom;
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Aussie Barb
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Posted: Sat Dec 29th, 2007 06:48 |
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jeanninehope: On the subject of Depression.
Health Professional
I find it very interesting since everything with me started with the diagnosis of depression then many years later Fibromyalgia, Chronic Fatigue and Lyme disease (which we know now is all the same..different color cats but all are cats) The Marshall Protocol has put me in a place that is indescribable when it comes to my depression. I had depression (pre MP) to the point of wanting to commit suicide many times not to mention life was a struggle everyday.
Mood swings were something that was a part of daily life for me. My TH1 symptoms started as depression then came the pain, fatigue, and poor sleep, daytime sleepiness etc etc...Antidepressants saved me but never have they relieved/gotten rid of symptoms....like the MP. I am now starting to live a life I have never known. I am not the first member to note this but I am amazed at just how good things are.....Of course when I herx the depression, moods and sleep can worsen temporarily...but when I am not herxing WOW WOW WOW. I just cant say enough about it. I keep getting amazed when I see the progress I am making. It is like a dream come true....a life I have never known.
Jeannine
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Jeannine: CFS FM Lyme Morgellons| pain fatigue depression flulike joint pain| 2/06 1,25D-49 25D-11 9/06 25D-11 2/07 25D-?| prozac20mgqd| MPstart 7/14/06 Beni40Q6 P1 8/06| Mod Ph2 date 5.07
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Aussie Barb
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Posted: Wed Jan 2nd, 2008 06:57 |
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twyf: Member in Phase One: strep 2002-3, lyme 2003-4: 15years old.
Progress report for Lymabean:
October 2007:
Adolescent with Lyme improves dramatically
Took Lymabean to the doctor yesterday to get her meds refilled.
She is taking 40 mg Benicar every 6 hours now, and has been on mino 50mg every third day.
Her doctor's comment was, "This isn't the same kid that was in here two months ago."
And he is so right.
Her headach and joint pain is diminished greatly, her brain fog is less, memory better, and balance is somewhat better. Her childlike voice is now mostly a thing of the past. Her handwriting, which was horrible, is now back to the beautiful script that she's had in the past.
When we started the MP for her two months ago, she was struggling to do grade level algebra. Now she is doing eight subjects and doing them well. She now has textbooks on cd for the blind and dyslexic, and that helps as she can read along with the text and listen at the same time.
To give you an idea of how this ride has been for her academically--in the eighth grade she tested at a twelfth grade level or higher in reading and math. A few months later her health declined rapidly, and she couldn't do simple addition or read simple words without extreme difficulty. We learned of the MP shortly after that, and took the measures that we could--light avoidance and dietary changes, and her math ability came slowly back, with her reading ability coming back even slower. But they did come back.
Now that she is on Phase One, the difference is astounding. It's just sometimes hard for us to remember how bad things were because the changes are so slow.
Her bad days are much, much better than her good days used to be.
We will be advancing her to 75 mg mino next dose, and will see how things go. It took her a long time to stabilize on the benicar alone, and then when we added the mino, it was like a truck hit her, but now we can't discern the days when she takes the mino. It used to be extremely obvious when she took mino, but now it's only noticeable to her.
Slow and steady seems to work really good for her. We are all in this for the long haul, and her doctor, great man that he is, prescibed the benicar for the whole year!
We also stopped by and saw her physical and occupational therapists, and they really noticed the difference and were really, really happy. They have been wonderful friends to her and were really enouraged at her progress. When she gets stronger, we'll take her back and let them help get her hardened athletic body back!
Many thanks to the wonderful people on this board and also to Dr. Marshall for figuring this out, and to all the incredible folks who were pioneers with this protocol. This surely isn't the easiest thing to go through, but the struggles are surely rewarded greatly.
My family has been encouraged by you all in different ways, and we are extremely thankful and grateful.
For Lymeabean,
Dad
January 2008:
She saw her doctor this month and he tested her walking ability as always. This time, she was able to walk nearly unassisted when he realized that she needed to look ahead instead of at her feet. It seems that her vestibular response has been all messed up for nearly a year, and to walk she had to have visual input.
Her dr tested and moved her feet with her eyes closed and for the first time, she was able to receive the signal from her feet to her brain and determine where her feet were.
Her progress has been astounding (except to us, who miss the changes because they are so slow...). Her voice has lost it's childlikeness, (the dr says it dropped two octaves), her pain level is much lower, she's been waking up earlier, school is easier, she is much more sharp mentally, her speech defects are fading, she fights more with her little brother.
She is now able to carry conversations again, and is getting caught up. Her writing is back to her normal beautiful penmanship, and she no longer misspells.
It won't be too long before her dr will allow her to get her drivers permit. She still has some issues when she has lots of light exposure, but nothing of real significance.
Still a night-owl.
Her body hurts because she is learning how to walk correctly again. I can surely empathize with that. Her strength and endurance are slowly coming back.
Apologies for not writing more often--our family has a lot of catching up to do from her illness and my broken femur. There has never been a time since she started the protocol where we were really concerned about her health, fortunately. She had some hard days in the beginning, but they were better than many of the other things that we have experienced together with her health.
I know that soon she will need to start phase 2, and we will be happy to get her to fill out the questionaire. Two months ago, she couldn't have....
As the year ends, we have so much to be thankful for!
Tonight she is teaching her Granny how to crochet.
I would like to thank Dr Marshall for figuring it out to begin with, and those brave and (probably desperate) pioneers who helped to make it easier for those who followed. And thanks to the moderators who give of their time and energy, and to the folks who have encouraged us to continue to work to find a dr and not give up until then.
It is awesome to know that soon she will be caught up again to her peers, but will have the maturity and wisdom that can only come when you have fought and overcome something of this magnitude.
Happy New Years to you all!
Lymabean's dad
I know there is a long ways to go, but if the progress continues, there is nothing left but to be thankful.
January 2008:
A few days ago she asked me to take a walk with her after dark, and we were able to go two blocks altogether, and she had no balance issues other than having to concentrate when navigating the curb! She was still using her wheelchair in November and walker in December.... Major progress. Her doctor will be very pleased when we see him.
Schoolwork is a lot easier, and she is almost able to read as well as before. ~Twyf for daughter Lymabean
More, end January:
We have nothing but good news to report at this time.
Lymabean had what appeared to be a viral infection, which in the past normally resulted in swollen tonsils, tonsillar stones and much pain and fever over an extended time. However, it lasted only a few days and the symptoms were more "cold like" than "strep like." The pain was bearable and nothing like it was last year without the MP. She is doing much better now.
This week she walked with me almost nightly, and one time she jogged (until her knee started to hurt...). She is also taking up roller blading again. Last night SHE WAS SKATING BACKWARDS AND DOING CIRCLES!!!
Yes, I am shouting, but only because I am so happy. Just this November she was in her wheel chair/using a walker because of poor balance issues, in December was still using the walker, and now she is using neither.
All of the words that she couldn't pronounce all come out clearly now and correct, and now she wonders why we says words like Moffy and Daffy and Voctor and Dweeze and Hoopy. (Mommy, Daddy, doctor, Louise and Huey). She could also never say the word toothbrush--it always came out "toothpaste." Her brain was severly challenged by the bacteria, and now they are losing, and she is getting all of her faculties back.
Her physical therapist was thrilled to see her walking the other day. (She hasn't been to therapy since she started the protocol).
Thank you all for helping to get our daughter back!
Dad
June 2008: Update posted
Lymabean is almost done with phase 2. Her progress is amazing. It has enabled us to try to start to catch up in the other areas of our life.
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Lymabean: strep 2002-3, lyme 2003-4, recurring symptoms 2006, anti-gliadin positive| 10/06 D avoid, dark room| 10/06 NoIRs| 9/06 25D-24 1.25-42, Benicar 40mg Q6H. Mino start 8/7/07| Ph2 Feb08|
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Aussie Barb
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Posted: Wed Jan 2nd, 2008 06:57 |
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JRFoutin - Janet: Sarcoidosis: Phase 3. working long days.
eClaire - Progress: CFS FMS MCS COPD: energy improvement
Linda Lou: Sarcoidosis progress
Deb Grabetz: Sarcoidosis: undeniable, incredible progress!
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Aussie Barb
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Posted: Wed Jan 2nd, 2008 07:58 |
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RichardM: CFS, IBS, weight loss/thyroid/liver/digestion issues
I haven't noticed stiff/aching hands/fingers for a few weeks now, and I've had hardly any tics in major muscles compared to earlier. I haven't really figured out if/how much my neuro symptoms have changed - I find those the hardest to monitor - but I haven't had the occasional spelling difficulty whilst writing this post that I've had in the past.
But the big news is I reckon I'm gaining muscle stamina!
On the 9th day at 100mg I played three games of singles tables tennis in a row. I felt reasonably tired but not completely worn out, but before I would have found that very difficult.
I had two separate 45 minute singles table tennis sessions today (at least 6 games per session). I got quite tired again but not completely worn out, and even felt like there was a bit of an emotional lift too. This compares with earlier times where I felt more worn out after two singles games than I did today.
I'm going to see my doctor in two days so the last few nights I've gone out for a walk (after sunset) to see how far I get. There are significant inclines in both directions on my street. On other occasions (on lower mino doses) I've only been able to walk a short distance (perhaps gaining only one or two metres of elevation) before getting really tired (and breathing heavily). My first attempt I made it all the way up one hill (approx. 10 metres elevation) without notable difficulty and walked back down. I felt good enough that I might be able to do it again, so I started up the larger hill in the other direction (approx. 25-30 metres elevation) and made it most of the way up before my leg muscles started to feel a bit rubbery. I repeated this with similar results on the two following nights!
I also went on a reasonably long shopping outing with my wife the other day. I still notice some vision and lightheadedness/dizziness weirdness at times in shopping centers (despite the wraparound glasses) but I lasted much longer than I have in the past.
June 2008:
Restless Legs: There are two pieces of good news. Firstly, as the MP has progressed I'm finding I get restless limbs less often It even went away for a couple of months and now comes back sometimes, but less frequently.
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Richard: MP phase 1| Dec 13 mino 100mg q48h| Benicar 40mg ~q6h (~8h at night)| Armour Thyroid 90mg q24h| Sep 25D=5.6ng/ml Mar 1,25D=61pg/ml| inside: 0%/10% blinds, low light, ~15% green glasses| out: covered hood/gloves/sunblock, 2%/10% NoIRs over ~15% glasses
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Aussie Barb
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Posted: Sat Jan 5th, 2008 20:11 |
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INTERVIEWS
http://bacteriality.com/
Interview with Belinda Fenter
Interview with Dr. Greg Blaney: MP physician
Interview with Shirley J. (Saj) - Sarcoidosis
Interview with P. Bear R.N. – Chronic Borreliosis (”Lyme”), MCS (multiple chemical sensitivities), Chronic Spinal Inflammation, Peripheral Neuropathy
Interview with Sherry Cook (sarcoidosis, cat scratch fever, restless leg syndrome)
Interview with Leesa Shanahan (sarcoidosis, Hedfort Syndrome, uveitis)
Interview with Mirek Wozga (sarcoidosis)
Interview with Paul Albert (CFS, depression, food sensitivities)
Interview with Julia Grier (sarcoidosis, OCD)
Interview with Carole Morgan (sarcoidosis, fibromyalgia, CFS)
Interview with Guss Wilkinson (sarcoidosis, psoriasis, insomnia)
Interview with Robyn Russell (Lyme, myoclonus)
Interview with Sue Andorn (Lyme, babesia)
Interview with Ival Meyer (arthritis, dyslexia)
Interview with Guss Wilkinson (sarcoidosis, psoriasis, insomnia)
Amy Proal (CFS)
Freddie Ash - Sarcoidosis: heart, coronary artery disease, atrial fibrillation
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Meg Mangin R.N.
Research Team (on leave)
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Posted: Thu Jan 10th, 2008 03:28 |
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Update:
Melinda: Lyme: MP will change your life.
twyf: for Lymabean: 15years old. Progress
Desert Marie: Lyme: opthamalogist found absolutely no sign of cataracts.
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Nothing contained in this site is or should be considered, or used as a substitute for, medical advice, diagnosis or treatment by your physician.
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Meg Mangin R.N.
Research Team (on leave)
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Posted: Thu Jan 10th, 2008 21:38 |
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Melinda
Lyme1999/parathyph1986/hepB 1973
Mid 3rd Year Report. ! Present med Benicar q 4 to 6 hrs. antibiotics held.
Happy New Year. Wishing everyone will have a Happy Healthier 2008.!
I was up North for Holidays.
2007 was a very good year for me as I have reached a point in my MP recovery where my body is free enough of disease that I am able to do most all life tasks and even travel abroad. Today I am starting a volunteer job. Any work commitments really worried me up till now, but I feel that all my small amt of symptomlogy is manageable and I will enjoy being out with people again.
Since I last wrote I continued to use small combos of antibiotics then went to freq small mino then stretched it out till at present I am on Benicar alone. My body is basically pain free most of the time. The ankle and foot pain is gone and recently I've walked quite a lot over the holidays and didn't suffer pain or swelling. The Ip of burning mouth seems to have cleared. My immune system is still having small rounds of killing. some days I get a left sided headache and some negative thinking or the IP comes as a stiff muscle or an abd cramp. Basically it comes on quickly and then goes. I do use Tylenol for the head but I usually just say "Oh I'm just having one of those days"..and I try to rest more on those days.. If I'm tired I get more insomnia which is still a pest. Like last night ..I flew home from the Holiday visit to the North and even though I'd run all day I was overtired and was wired instead of sleepy. So I slept from 2am to 10 am..My back pain is gone. After sitting on plane this morn only had tiny stiffness on getting up but no pain.
I did have the dreaded flu over Christmas which I got 1st so I was a bit confused if it was IP but then my husband started the same symptoms and we had the joy of Christmas in bed taking turns in the loo.
So for all those of you still wondering if all the pain and bad days are worth it...I say YES ..do the MP it will change your life. Not overnight but after a few yrs you will really look back and think wow. I’m healing !!!!
When I started the MP stepping off a curb in the road was a major journey...putting my pants on was a major feat...looking back I just didn't even realize how many years my body was in pain and how incapacitated I was..Now I expect to be able to
climb stairs and walk around shopping and even socialize and drink some wine. This New year's I even overate and drank wine and felt fine!!
I talked to people all day and didn't get that overwhelmed feeling..
The other great event that happened is that my daughter got engaged on Dec 30th to the greatest guy and I'm well enough to think I will be able to handle the stress of helping with her wedding plans, run around shopping and have fun instead of being neurotic and worried...
My plans are to enjoy this level of wellness and just do Beni for awhile. Then later in the winter I may do more rounds of combos. But because I feel so good I am enjoying myself and feel the immune system plus the beni will do its job and I will keep improving...As far as light and heat in florida is concerned I will keep you posted, Ive been in Delaware and NJ for Hoilidays and tolerated lots of car rides..
My Best Wishes to all the Dr Marshall our Hero !! The Board and all those doing the MP. We our pioneers for thousands to follow. So keep on truckin .!!
On ON and upward. Melinda
Interview with Melinda – Lyme, Irritable bowel syndrome/colitis, Radiculitis (inflammation of the nerve roots)
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Nothing contained in this site is or should be considered, or used as a substitute for, medical advice, diagnosis or treatment by your physician.
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Aussie Barb
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Posted: Sat Jan 19th, 2008 07:46 |
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Gail
Member in Phase 2
I have had a wart on the index finger of my left hand for over two years.  Pre MP I had tried wart remover, freezing, wart bandages and even home remedies. Nothing worked!!
Over the past week I have bumped my finger right on the wart about three times and I noticed that it was more sensitive than usual, but I never looked at it. Just one of those things that I have had to put up with since I have had it.
So this morning I bumped it again, but this time I looked at it. Man oh man was I shocked and thrilled when I saw that it was gone!!!!!!!! 
I thought that the MP would take care of it gradually and eventually it would disappear over time, but this was GONE!!!!!!
YAHOO!!!
I know....such a "small" thing to be excited about. You just don't know how much of a pain and inconvience I have had because of the wart. It was even hampering my work.
Gail
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Gail: Sarc'94: pulm, Ant. Uveitis L eye, gallbladder, HypoThyroid, Palpitations; 10/06: 25D=4/1,25D=30 11/07: 25D=14; Synthroid 0.75; Allegra 24hr; Pred Forte q8hrs, Oxycodine & Tagamet as needed; NoIRs, all covered, & Keto when in sun| P1 11/07;
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Aussie Barb
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Posted: Fri Jan 25th, 2008 22:55 |
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Update
twyf: Lymabean: 15years old. Amazing Progress
Adrianne's MP update CFS: progress summary after 1 year on MP
Vicki SA's update: ME/CFS: New Year update
Betsy G recent improvements
Last edited on Fri Feb 8th, 2008 09:14 by Aussie Barb
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Aussie Barb
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Posted: Sun Feb 3rd, 2008 05:50 |
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Cheryl B
I started the protocal in september, i was so very sick then. i am much better now, i have had much improvement very quickly. it really surprized me. i do feel bad when i have herx every other day, but i feel pretty good the next day. so you are right, i dont feel good every day due to immunopathy, but overall i feel better than i have in the last 5 years.
and for new people looking into this treatment maybe my post might help.
i am feeling alot better. the horrible infections i had everywhere are now gone. including the bladder infection i had for a year before i started the MP. it is a miracle!!!
this is why my brother wants to try the MP. because i am getting better. he will start the MP when he is ready. i will tell him to come here and ask questions. then he can get the help he needs. you are right that i need to focus on me recovery, i just love him very much and i know he is just suffering like i was.
this is a long journey and a huge commitment. i will do a better service to me and my family by focusing on getting myself better which i have so far. my family was stunned when i walked in the door. they could not believe the difference in me. i look better and i was able to attend all the family functions, when before i always had to go lay down and rest after 2 hours or so. it is the main reason that my brother wants to try the protocal. he believes me now that he may have the same illness and he sees that i am better. all my mom said was "the proof is in the pudding and my daughter is better" then she cried, it was so sweet.
my family just got frightened when i told them that bacteria was making me sick, but it is a little scary to know bacteria is at the root of my familys illness. they just got scared. thats all. then i told them that there is treatment for it and that we dont have to be scared of it. i told them that it does not scare me anymore, now if there was no treatment that would be scarry. they all agreed with me. we then went on and had the best christmas ever!!!!!
i hope others can read this and know that they too can get better. i am the proof in the pudding!!!
take care all,
cheryl b
May 2008: Have been able to go back to work!
Having a break on Benicar only. coming back to antibiotics now all is settled.
sun exposure: about 3 hours , driving to patients homes and back. i wore noirs and have k- cream on skin always.
light exposure: 4 hours a day, for 2 days this week. i wore my sunglasses in the lighted situations, said i was a rock star-just kidding, i say i am photosensitive-they dont seem to care.
comments: i had a huge life change. i was finally well enough to return to work in an administrative role. financial reasons. i decided to try to go to work since my brain fog and memory problems are almost gone, and the cough, fatigue, depression symptoms are minimal now.
i have been very busy, tired and elated. i was crippled and unable to support myself for the last 6 years-with no family to help (they are sick, dying or already dead) so i had to find a way to support myself.
the work is hard, but i only work 20 hours, and i am making more money than i have seen in 6 years, i can afford to eat right and take much better care of myself now.
i am just now doing much better, i was very overwhelmed at first, just while i was learning my position and role with my employer. but now i am settled in my new job. the paper work is alot, but i am now caught up there, so i can do the work i need to do here.
i was very overwhelmed going back to work. i am no quiter and i will complete the MP. i needed to take a break so i could return to work.
i started MP break 4/7/08 to reduce IP symptoms so i could return to work and get through the ordeal. i am now caught up, i am trained at work, i am adjusted to the return to work. i can now continue on with the MP. i will just have to keep IP at tolerable level.
i am doing really well with the light exposure, i am protecting my eyes and skin. i am being very careful while working. i wear the strongest noirs while i am driving.
symptoms: i feel great, i have no depression, just mild IP. the IP just decreased it did not stop, i guess my immune system still working due to the benicar. no new infections in 9 months now.
plan: start back antibiotics after i hear from staff.
i never thought i would be able to work again, i was just too sick. now i am so much better, i am a fast converter on the MP. this treatment saved my life. i am healing, and i know i would have died if i had not started the MP. thank you so much for your time, and i will start back on the mino as soon as i hear back from you.
i am healthier than i have ever been my whole life due to the MP treatment, i was severely disabled before i started the treatment. now i am working part time and i feel great! IP and all.
again, thank you! this last month has been the best month of my whole life!
June 2008:
i am doing really well. i have worked now for over a month, still no new infections...my immune system is holding. its a miracle. i am so happy.
my doctor is truly amazed, he knows this scientific breakthrough is right on the money! he was so glad to see my life turn around, he gave me a big hug and was overjoyed. he watched me suffer for 3 years....it was very sad. cause i am a real nice lady, just was so very sick.
so i am another success of the marshall protocal. i went from almost bedbound to working within one year.
oh, and those huge black circles under my eyes are almost gone.
incredible...
June 28th 2008:
today was my birthday, it was the first birthday i felt good in probably 20 years. it is just like being born again. i look forward to every day now, i just feel so good. IP and all.
one more thing, i ran across my story someone here compiled from my progress notes over the last year, it was under success stories. last year i was reading other peoples success stories, and i could not believe i was reading my own success story, it made me cry tears of joy because my life felt like one big failure untill i found the MARSHALL PROTOCAL.
i have felt embraced and cared about all during my healing process here by the wonderful people that volunteer thier time to save peoples lives. thank you all for saving my life. not only did you save my life, you gave me a life that is wonderful. i have transitioned from a sick and depressed person who lived a pain filled existance, into a joyful person that is full of wonder, hope and purpose. especially since i went back to work as a nurse 8 weeks ago.my happiness touches every life i come in contact with, and i have true empathy for my patients as i understand what its like to feel bad.
this is not meant to be bragging on myself, i just want everyone here to understand the magnitude of this work you are doing. i can never repay what has been given to me, but what i can do is pay it forward to my loved ones and my patients at work. i would not be living this good life or doing this work without you and the hard work you do here.
what a wonderful birthday i had today. thank you so much for my new life.
BTW my doctor is now using this protocal on his other patients because i am his success story too. he saw it with his own eyes.he is thrilled that he now knows how to help his patients heal. he started using the protocal in full force last month.
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Cheryl B: immune dysfunction, chronic infections, respiratory symptoms| clorazepate/ anxiety, ventolin or nebulizer prn congestion| Oct 07 1,25D-43 25D-55| beniq8 10/22/07| 11/3/07 start mino] wear noirs| Ph2 Mar08
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