The Marshall Protocol Study Site > PROGRESS REPORTS [members in study cohort] > Phase One Alumni Forum > Shari's progress summary
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The Marshall Protocol Study Site > PROGRESS REPORTS [members in study cohort] > Phase One Alumni Forum > Shari's progress summary |
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Shari Gold Member in Phase 3
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Hello all.. Just thought I would chime in for documentation purposes. I am doing pretty well these days. As compliant as possible. During the week, I only go out once a day to pick up my daughter's from school. LA has been lovely the past month. It has been raining a lot and rather cool. I am not looking forward to daylight savings coming in the next few weeks, but it does signify the time going by and it is hard to believe I have been on the MP for going on 8 months!!!! In Phase 2. Last week, when I introduced the 100 mg of mino for the first time, I had quite the neuro herx that lasted almost 3 days. I have not had a head ache like that for sometime and I know it was all IP b/c the pain came on within 2 hrs of taking the mino. I almost did not take my next dose of mino on Wed. for fear of runaway IP, but I did and let me just say, the next day, Thursday was amazing. I've not felt so clear headed and pain free in my back/ neuropathy region in a long time. It was truly amazing. The wildest part of this journey is just feeling human again. It is like trying to speak English to a Martian if you have not been in these shoes. My nervous system was so disturbed for so long and now, I feel so relaxed. I do understand that Benicar works in an anti-inflammatory way - but to look at my skin now, or more so the musculature under it, specifically in my face, I look like a completely new person. I do not have this frozed/ pained/ concerned look on my face any longer, which used to be frozen in that way. The furrow lines in my brow seem to be lessening. The puffiness in my face (which is characteristic of so many in my family, it must be the strain of the bacteria that runs in my family line) has greatly subsided. A friend whom I had not seen in months commented that I looked like I was "glowing" and that was saying something b/c that particular day was the day I was having the whopping headache herx! You know, I believe the MP could gain a bigger following on that alone  My left infraspinatus/ neuropathy region has really been showing itselft to me today. Which is great, because that region has been so devoid of strength/ feeling. Something is happening there. Very excited. It is just so hard to believe how far I have come. I feel so much more alive and wanting to be present. My daughters (ages 5 and 8) are really enjoying having their mother back. I am not laying around on the couch in pain or getting angry with them/ over emotional at the slightest event, which I used to b/c I was in so much pain. Truly wonderful. I can not wait to move into phase 3!!! More to come. Best to all on their journeys .... Shari ____________________ Chronic lyme 19 years, peripheral neuropathy w/ muscle wasting, 1 spot localized scleroderma (morphea), MCS, CFS, Fibromyalgia Ph1 (8/08), Ph2 (10/08) 25D 20, 1,25D 58 |
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BARNEY Moderator 
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Shari, Loved your post. So glad you are doing good and proceeding right along to recovery. HANG IN THERE, WE WILL MAKE IT!!!!BARNEY  |
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Shari Gold Member in Phase 3
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Hello everyone, First off, Barney, thanks for the encouragement! Well I just wanted to say I am about to begin Phase 3 in a few days and I am truly amazed to be sitting here getting ready to GO THERE. My recovery in the last few months has been nothing short of miraculous - well, no miracles here, just amazing science and the tireless efforts of Dr. Marshall and his "crew". Here is some of my "latest and greatest" ... My main reason, the progressive polyneuropathies, that brought me to the MP continue to improve greatly. The big test for me is washing windows .. which has never been a favorite task of mine, who ever does enjoy this should maybe have their head examined .. and maybe that person is me .. because I have been washing windows over the past few weeks and LOVING IT. And to that, I might add .. I have been loving CLEANING MY HOUSE!!! Which wasn't possible just a few months back. My left neuropathy, or my chicken wing as I lovingly refer to my left arm's scapular region is just getting stronger and stronger. The washing/ waxing motion is something I could not do for very long w/ o being very fatigued and here I am just washing away lately, no problem. Oh .. and FOLDING CLOTHES, again another repetitive, fatiguing motion I used to have problems with -- NO MORE. It is the little thing in life we take for granted right? I will never take folding clothes for granted again! I am so thankful for this. My energy continues to improve. I had a very busy day yesterday, running errands for my daughters bday party this weekend. I was covered completely in my new, very chic patagonia jacket http://www.patagonia.com/web/us/product/product_focus.jsp?-- in the search area type in: Women's Mor Coat -- if anyone is looking for a jacket perfect for the MP, search no longer. And it is onsale right now for $100. I paid $200, so get them while they last! Anyway.. I was running errands all day yesterday in and out of sun, but completely covered. At the end of the day, I was tired, but not nearly as wiped as I would usually be. And even w/ the sun exposure, I was okay in terms of not feeling my "solar flare" symptoms which is a very specific feeling of fatigue I get from the sun, very different from my herx. I zonked out last night and slept hard and awoke very refreshed and painfree today, which would not have been the case in the past. My muscles would have been burning and achey and exhausted the next day. Also, I have been holding bronchitis at bay the last few days. My daughter is taking abx right now for this nasty cold she picked up and gave to me. This is the first cold of mine since starting the MP in August. I would normally have had Bronchitis at least 2 times by now, necessitating the use of abx to get over. And yet, my immune system is handling it. I have a little congestion in my chest and sinuses, but nothing my body can't handle if I am taking care, which I am. Finally, and this is the really big one, I can hardly believe where I am on an emotional/ mental level. I think so many people w/ Th1 have NO IDEA how sick they really are in terms of their CNS. I feel like a completely different person. I am reading and writing stories again. My dreams are so lucid and interesting again. I had all but stopped dreaming and now I am dreaming again. My emotions are so level and CALM. Things that would have usually really sent me into a tailspin, don't even make me raise an eyebrow. Case in point, yesterday, I was shopping at a local, large chain health food store, getting lunch for myself and daughter, and a man, a complete stranger came up to me and felt compelled to "question" me about my "attire". Here's the dialoge almost word for word: "Excuse me, I was wondering, why it is that people like you feel compelled to be all bundled up inside wearing sunglasses .. inside?" To which I smiled and replied I had a health condiditon that necessitated I did. End of story. The man replies, "Oh, I am so so sorry, I hope you get better. (Pauses) Is it a physical or MENTAL issue?"  Wow .. it sort of glided right over me at that point. The old me would have been insensed, fuming, hysterically trying to think of an AMAZING comeback that I would not have truly been able to do any justice w/ b/c of my poor TH1 riddled brain, ... INSTEAD, I sort of smiled inside and thought .. did that guy really say that? Wow. I sort of smiled and felt bad for him b/c I felt like he himself was in a lot of pain (probably TH!) And then I just went about my business, tootle-ing along -- calm and happy as a clam to be out, running errands w/ my daughter and not horizontal on my couch at home w/ a head ache wondering why I was so ill. TRULY AMAZING!!!The other part of my equation that seems to be working for me and I in no way advocate this for anyone else here .. but at my doctors request, I have added some B12 to the mix. I did so very carefully and this seems to have greatly aided my progress. Unbeknownst to me, my paternal grandmother had B12 issues all her life and had to get shots. As recent as the last seven to nine years, my bloodwork has slowly and increasingly indicated enlarged RBCs, but a low count of them, so my doctor was obviously concerned w/ anemia (the pernicious kind - remember my other iron-deficient anemia has "magically" resolved itself 6 months into the MP based on my last bloodwork figures  ). Even though I did not want to veer from the - no supplement aspect, I decided based on further review of my bloodwork to do a "therapuetic probe" w/ the B12 and it seems to be vastly improving my rebound in herx. I don't know how to describe this, but .. when I would herx in my back and hip region, I would get this build up of I don't know what in my neuropathy region and muscles too .. sort of like lactic acid ... maybe Nitric Oxide .. I dont' know for certain, but the B12 every other day, sublingual is really helping. And, my diet is somewhat calcium deficient, so added that in increments of 250 mg calcium citrate on the off days from my mino and that is helping as well. All of this is truly AMAZING. My kids are noticing the changes and my husband, as reluctant as he has been, can't help but SEE the changes too. I can't wait for Ph3 and I am really hoping that stubborn spot of Morphea on my back fades into a distant memory in the coming months ... we'll find out soon enough!!! Best of health to all!! Shari |
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BARNEY Moderator
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Shari, Great report! I forgot about how I used to hurt hanging and folding clothes. Thanks for the reminder. The old saying goes, out of site, out of mind. Here's a link to help you with the VitB12 issue: Vitamin B12 (cobalamine) Hope this helps. HANG IN THERE, WE WILL MAKE IT !!!! BARNEY |
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Shari Gold Member in Phase 3
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Hi Barney, Thank you so much for the B12 link .. I am very familiar w/ it and I studied for some time before deciding to "try" the B12. I am using the correct methylcobalamin form, sublingual as noted here. The reaction for me has been all the difference in the world - particularly in getting over the myalgia after the herx. My levels on my recent serum blood work were also on the much lower end of the spectrum now then they were about 9 years ago when I had my B12 and folate levels checked. Interestingly enough, at that time .. my RBCs weren't enlarged or low in number, so with my physician's guidance and after some forensic bloodwork seraching, I decided to "try" it. My body is so sensitive that for me, it was an immediate and profound difference. I can almost "feel" when I feel depleted. So far, I am herxing more than ever and since adding the B12, I recover from my nasty herxes in a shorter time and are able to "push" it a little more with the abx. That said, that is ME and I know some reading this may decide to give it a try, so I appreciate the link as a place for others to defer to. Isn't that AMAZING about the clothes folding!!! Yes, as things get better the longer you are on the MP, I can imagine you do tend to forget. I have already forgotten the terrible NIGHT SWEATS I was getting on a constant basis. I'm 37 and I seriously thought for the last two years I was in the beginning of menopause!! Now, when I do have a little bit of night sweat here and there (much more mild then when I used to get them all the time around that time of the month) I know that it is actually IP and not so much my hormones all wacky!!! I just took my dose of abx around 6:30 tonight and here I am with my classic band like headache, and the tiredness setting in, right on schedule. It is so nice to know what to "expect". I will be interested to see what gems I get when on the Clindy too! Best, Shari |
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Aunt Diana Moderator 
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I'm just thinking about something you said....wouildn't it be interesting if we find that night sweats and hot flashes are a function of Th1 illness compounded with hormonal changes. This could explain why some women have horrible menopauses and others hardly notice. |
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BARNEY Moderator
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You might find this as funny as I did til I talked with him and then felt sorry for him. I was at our privately owned grocery "Peppers" yesterday, when one of the managers walked out of the office with a small battery operated fan aimed at his face, I leaned over and asked him if he was hot (I was joking) and he said he has hot flashes so bad he HAD to walk around with the fan. I did not realize that men had to go thru that horrible event. HANG IN THERE, WE WILL MAKE IT!!!!BARNEY |
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Shari Gold Member in Phase 3
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You know, I really do believe that menopause and a lot of "women" issues are definitely part of TH1 issues. There is a great article written by Amy Proal on her bacteriality site about the VDR and the uterus/ placenta during pregnancy. Obviously, we all have our own little on board Th1 "passengers", then you add pregnancy to the mix and the little buggers are able to grow/ multiply unchecked b/c of the extra VDR stimulation during pregnancy in the uterus/ placenta, and then here you are in you mid to late 30's w/ a bunch of seemingly non-related, ideopathic health issues. I was obviously sick before both of my pregnancies, but during, I felt so much better b/c of the VDR pallation. In both instances, after delivery, my helath took a dive for the worst. The second pregnancy nearly did me in b/c during this time, I met my "chiropractor" who was into Weston Price and Cod liver oil and tons of Vitamin D. So I had a double whammy w/ being pregnant and supplementing. My goose was cooked!! The hormonal stuff had gotten so out of hand for the last year or two. It is SO WONDERFUL not to soak my bed at night in a cold sweat anymore (around that time of the month). This was one of my first validations that the MP was working!! Best, Shari |
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Shari Gold Member in Phase 3
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BTW .... the cold/ upper respiratory infection/ bronchitis that I have been staving off for the last few days has been interesting. My youngest daughter had acute croup last saturday night and then promptly developed a sore/ throat ear ache on Sunday/ Monday. I was around her and getting coughed on so ... I started to get the tickle in my throat by wednesday and it sort of was lingering there. My immune system being in good shape has been really doing a good job keeping me on the boderline or something serious, but in the last few days, I have been tipping in the direction of getting really sick. Been experimenting w/ my Benicar today and taking it every 4 hours just to see if it affects how I feel and BINGO ... I think the greatest part of this "infection" is actually IP. I feel so much better in the middle of my 4 hour Benicar dose. So I may be dialing my abx way back for the next week to give my immune system a bit of a break to kick this and move on again. I think I am really getting the hang of this! Best of health to all! Shari |
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BARNEY Moderator
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YAHOO......I'm glad you are getting it!!!!!!!!!!!!! If I am going out to do errands, the alarm (for pills) before I leave, I take 40mg instead of 20mg and each time the alarm goes off (while I am out) I take 40mg instead of 20mg and I do this until I get home. Wow what a difference. HANG IN THERE, WE WILL MAKE IT!!!!BARNEY |
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Shari Gold Member in Phase 3
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It has been a month or so and I feel inspired by a recent post from another MP'er so I thought I would chime in as well. The last month or so has been interesting to say the least. I am now officially in phase 3. It was nothing short of earth shattering that first clindy dose! My parents were visiting and the last two days they were here I decided to take my first dose of clindy. Again, most of my herxing usually happens on the second day, by the end of the first day, I was pretty exhausted and my legs (quads) were really weak/ tired. Interesting for me b/c this is a place that I have been weak on and off since my illness started heading south about 10 years ago. Anyway.. didn't think much of it, just thought maybe I over did it that day. Well... the next day was more crushing fatigue. This fatigue is the kind where you feel as if you are walking about in atmosphere of molasses. Need I say more? I couldn't believe how much it leveled me this beginning of phase 3!! I had dropped the zith, and mino back to starting doses and cautiously added my 1/4 clindy. I was shocked since I had been breezing along at the end of phase 2, think I was a little full of myself. Those first 10 days or so on phase 3 were a real eye opener. I also spiked a fever (hovered around 99.9 to 101.2) for almost two weeks. I just couldn't seem to sleep enough hours in the day. Then, it dawned on me ... yes I was taking lowest dose of clindy .. but the half life of the zith was pretty long . so I really had a significant level of zith in my tissues when I added the clindy. Once I figured that out, my life became much more manageable. Not that I am advocating the MP full throttle at Mach 11 as I did those first few weeks before my zith dissipated, but .. those two weeks did me some amazing good. My other two weeks after have been lovely. I feel like a human being again, I can tolerate more sun these days too. I have bumped up my zith dose this last cycle and immediately felt the effects. For me, this clindy/ zith combo is that ticket. I believe I have read a previous MP'er describe their condition as feeling like their connective tissue is held together with tape and twine .. and I know how they feel. I felt like a big pile of mush during and a bit after my first two eventful weeks. Also, I have had aches and pains in this phase that I did not even know were there, particularly in feet. Also a little bit of cardiac stuff, but I have been okay and stayed calm. Another interesting thing, I seem to be hacking up something deep deep in my bronchi. I am in no way congested right now, no cold, nada, but right after those two weeks I could be sitting up and take a breath and hear a little rattling in my chest and cough a bit to clear something that broke up. This has happended numerous times. One outward, lovely benefit ... my hair is coming in thicker (yes, this is confirmed by my stylist who pointed it out) and no signs of the flakey scalp either. The neuro stuff for me is and continues to be the greatest gain. I am sleeping so much better. My dreams are dreams again and I can remember them, and thankfully they aren't nightmares anymore. I am so calm. I have better use/ control of my arms, this is slow and steady improvement for me and I know is going to be the greatest outcome as much of this is in my nerves in back and hips. My only big moment of "woops" of recent was when I doubled up on the benicar. It was one of those days and I took another benicar on top of one within an hour or so. I know benicar isn't dose dependent .. so who know, maybe it was a herx as well b/c my BP was all over the place, had some fluttering in the chest and difficulty breathing. Just stayed calm and rode it out. I found this to be a bit odd.. b/c in the past, when herxing hard.. I could take an additional 1/2 tab in that 4 to 6 hour window of the Benicar dosage and feel better, which makes me think it was actually IP. If anything, this phase has really made me realize that I was so much sicker than I really thought. I feel like a rocket scientist compared to where I was 10 months ago. I cannot wait to be typing this in at month 24 and looking back on how far my neuro symptoms have diminished. For everyone out there having difficult times .. hang in there! All the best, Shari |
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DNStog Moderator 
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Shari..congrats on your improvements. Keep up the good work/healing..Donna |
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BARNEY Moderator
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Hello Shari, So glad that you are having a much easier time and have learned that the Clindy can be a sneaky little brat. HANG IN THERE, WE WILL MAKE IT!!!BARNEY |
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Shari Gold Member in Phase 3
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Hi Barney and Donna, Thanks so much for the well wishes. I am so thrilled to be feeling this much better so quickly (at just 10 months!). You're right Barney.. that clindy is one pill to swallow for sure. I am so amazed by how "spot on" the reaction to the clindy for me has been. They were'nt kidding when they said it targets the nerves. I am glad I have built up my understanding of herx with the mino and zith before adding the clindy. Had I added the clindy first as a modified phase 2, I don't know if I would have been able to handle it. Very powerful! I have a doctor appointment/ blood work scheduled in a few weeks and will post my results then! All the best, Shari |
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Shari Gold Member in Phase 3
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Phase 3 continues to be surprise after surprise. Everything is fine but I would like to add a moment of pause for some who, like me might be breezing along and all of a sudden have cardiac symptoms which has been the case for me in phase 3. Just curious how many people out there have had similiar experiences with phase 3 and the clindy? Most of what I have experienced is tachycardia and some bradycardia. Also, my core body temp will really heat up. I awoke the other night around 4 AM after taking my next dose of clindy/ zith/ mino the night before to tachycardia and I was burning up. Had that feeling of impending doom too. I knew what was up so I just did some deep breathing and a sublingal benicar, but I could see how this could be VERY SCARY for some. The funny thing is .. I knew I had some heart inflammation. The area just to the right of my sternum, sort of the intercostal muscles around that area, if you press on them, they are always sore and have been pretty much that way since my lyme diagnosis at 19. Once I started benicar in Phase 1, I saw an immediate relief in the constant pain. It is still there, no doubt related to the deep inflammation and it has taken me getting all the way to phase 3 to provoke significant heart IP. (Also, would like to add to this thought that EVERYONE on my father's side of the family dies of heart failure ... so despite the lyme, I know we have the familial aspect of Th1 in this area too!!!) Something new and fun to have to ride out. Taking it easy in phase 3 !!!!!Best to all! Shari |
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Deb Grabetz Member in Phase 3 
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Shari, It is interesting how we can be breezing along and then "boom" something kicks in, including the cardiac IP. It really took me many months to get to a point where I had some true calm moments, then out of nowhere started getting kicked again! Maybe the MP knows when we need a break... After almost two years I am just 3/4 of the way through Phase II-- I am so grateful that many MP'ers before us, continued to tell us how important it is to not rush things. Take care! Deb Last edited on Tue Jun 2nd, 2009 17:53 by Deb Grabetz |
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Freddie Ash Member in Phase 3 
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HI SHARI This is Fred in WV. On the fast & slow heart rates, I have been having a lot of fast heart rates in my part of phase 3 also. With all the heart problems I have, I have been reading everything I can find on the heart. What I am finding out is, not only inflammation in the heart itself but inflammation in our whole body. So it looks like if we have a lot of inflammation in our whole body we are going to have these problems with the heart rate. Over my life since Feb 1982 (when I was diagnosed with sarcoidosis afte 9.5years) I always had slow heart rates. I went to the ER once back in 1983 and I had a rate of 29. Another time while I was in the hospital a week my doctor came in one day and told me my rate had been running in the 37 range, and we consider you almost dead at that rate. But I have made it and now I am on the Marshall Protocol for over 4 years and I will be cured with it. Even with the HRTof 100 to 120 I have now the doctor told me back in April my EKG was good, just had the fast heart rate. I ask him is he ever heard of any one dieing of a fast heart rate, he told me no. So I am not worried about mine, becasue I know the MP will cure me. Remember, we are all in this together and I am pulling for us. Your friend in Sarcoidosis Freddie |
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Shari Gold Member in Phase 3
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Hi Freddie and Deb, Thanks for getting back to me. Yes this has definitely been a bit of a shocker to experience. I knew I had the underlying inflammation there, but it is really interesting that for me it is the clindy that has really been provoking it. The benicar, in the beginning stages, was such a nice "anti inflammatory" for me. That pain that had been there in the center of my chest .. the constant burn that I had come to accept as part of my musculature/ physiology for the last 18 years, just sort of went away. It is back now and with the addition of a faster heart rate when having significant IP and at times, that "foreboding" feeling. I am feeling so much better in general, but this is a definite signal to be cautious. I will be coasting here for some time I know parked at my current dose until the coast is clear. Thanks again for sharing your experiences... Shari |
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Shari Gold Member in Phase 3
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Hi Everyone, Putting this out there for any moderators/ advocates or MP'ers with similiar experiences. I think I have mentioned that I have been having some heart IP as of lately. I have been hanging in there and proceeding cautiously. Much of what I am experiencing so far has just been a bit of heart racing. What I am going through today and some yesterday is something I knew was coming .. so I am not surprised. I have pericardial inflammation and I have ever since I was 19 w/ lyme diagnosis. Over the years, that pain to the left of my sternum and in my back/ shoulder blade area (left side) waxes and wanes with a constant burn and there is the occasional arrythmia I have that I reset with a cough. Been to the doctor for EKG/ Exam and always the same answer ... you're fine. No surprise that I should start to get exaggerated pericardial symptoms like these. Same burn in shoulder blade area .. somewhat of a throbbing/ off and on. Today is my next big cycle of abx. I am supposed to take the zith/ mino/ clindy combo. I am probably not going to take this next combo tonight if my symptoms are not slowing down. Will wait a day or so. Just curious how others have weathered these symptoms before. Right now, I am going to increase my Benicar to every 4 hours. Thanks for any help! Shari |
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BARNEY Moderator
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Shari, PreMP, I had a lot of pain in the sternium area and several times a burning clear across my chest....it was usually after big exercertion. I have had some since MP and secretly to myself thought, oh Lord, I thought this would heal and would secrectly worry and then in a day or 2 it would be gone. Haven't had any in a while. Shari, I would back your Zith down a dose level for a while. Zith is the one that works on the heart. Hope this helps answer your questins. Drink plenty of water, xtra salt (sea) (regular salt is mostly chemicals), lots of rest while avoiding the sun and avoiding Vit D in your foods!!!!! HANG IN THERE, WE WILL MAKE IT!!!BARNEY |
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Shari Gold Member in Phase 3
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Hi Barney, Thanks for the input. I did back my dose way down on all 3. Glad I did. Interestingly enough, my reaction after this last dose has been one of needing to sleep A LOT and definitely more sensitive to the sun these last few days. Been doubling up my noirs (really attractive btw ) The neuro herx I experience really gets my attention. No doubt what is going on. The bugs are not happy!I seem to get the tachycardia when I take the triple combo. Also, my core body temp really heats up about 4 hours after taking the triple abx combo. The pain in my sternum/ shoulder blade area is much better too. Think it was a case of runaway IP in the beginning. It is really amazing the intensity of phase 3. I knew my body was really going to respond to the clindy. I think the synergy between the clindy and zith is the ticket for me. Guess I plan on spending quite a bit of time in this phase. Will have some bloodwork to post soon. I also just had my young daughter who is a Type 1 Diabetic (age 9) - D metabolites checked as well. Will post that info in a week or so. Thanks again, Shari |
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Freddie Ash Member in Phase 3
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HI SHARI This is Fred in WV. I am glad to see you are doing better. I had more problems when I tried to take the Z. It put me into the hospital for 5 days with CHF. So I went to a modified phase 2 at that time. Now after 4 years of the MP I now doing the Benicar only for a while. My fast heart rate is now at normal 71 to 78. I have a pacemaker so my rate is not to fall bellow 70 but I have a few times had 68 with my B/P taker. As Barney always says "HANG IN THERE WE WILL MAKE IT." Remember, we are all in this together and I am pulling for us. Your friend in Sarcoidosis Freddie |
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Shari Gold Member in Phase 3
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Went to the doctor today for my blood test results. Feelling much better these days once I backed my Clindy way back to starting levels. Currently, my dosages are: Mino 100mg every 48hrs Clindy 37.5 mg every 48hrs Zith 67.5 mg every 10 days Fatigue (in am) about a 7, as the day wears on, I feel much better. Muscle pain 3 Headache/ neck and shoulder - about a 2 mostly, but day after dose about 5 Insomnia 2 Hip pain/ burning 2 Neuropathy (s) 4 -- and getting stronger every day in my left shoulder area The most intersting thing to note as of lately is when I increased my dose of Clindy (too quickly) I had Tachycardia shortly afterward and my body temp really heats up. I was dosing my meds around 11 pm and would wake around 4 am with a racing heart (like I had been running full speed ahead) and I was burning up. This has gotten much better. Initially, I was trying to ramp the clindy first -- and then zig/ zag my zith and mino doses ... apparently this wasn't working for me b/c it provoked the heart IP too much. So I am back to ramping the zith first, then mino and THEN THE CLINDY!!! My blood work was really great again. Comparing things to my last findings in January .. my liver and kidneys are tolerating the protocol very well. My doctor is happy about this. My ferritin levels are holding steady in the middle range where they should be (no supplementation needed - which is just a miracle b/c before this was such an issue for me!!) My 25 D levels are also down ... in January I was 17 ng/ml .. I am now 12 The only issue I continue to have that seems to be my BIG issue .. is some methylation issues. My homocysteine back in Jan was 13.1 (the reference is 10.4 and under being normal) This time, my homocys. was 16.6 I have been supplementing w/ sublingual B12 for the last 4 months and only saw a very slight gain ... it went up 154 pts (the normal range being 200-1100) As of Jan I was 437 now I am 591. That coupled with the fact that my RBC count continues to be low ... my MCH is high ... my physician has suggested I get B12 shots to try and get my stores back up. I'm classic anemia of the pernicious type I guess (my grandmother was and so is my dad). I think when I did the Hg detox a few years back .. I really depleted the stores b/c I was taking oral DMSA (nearly did me in .. lost 15 pounds in a week and a half, thought I was dying) .. so I really have some issues here. We'll see how I feel in a few weeks and then retest in a few months homocysteine and B12. My physician is always interested to see how I am doing. He always gives me a sideways glance when he checks my BP which is frighteningly low .. but I assure him I don't feel dizzy and only do so when herxing hard.. seems to be the issue. I told him today that I was so pleased w/ my progress and how much better I am feeling. Also told him that you couldn't pay me a million bucks to quit At any rate, he is very intrigued with my progress because he knows how hopeless the lyme treatments are out there. I think I hold the key for him and they way he approches the treatment of his future lyme cases. I hope I am the goodwill MP ambassador in his clinic .. so far so good. He asked me what I thought my time table was today .. as to when I would be finished. I assured him that I would know when I didn't experience the solar flare ... which I do get after too much exposure to sun .. which seems to be getting better and better, but that I expected to be on the protocol at least 2 years, possibly 3. He was okay with this and said .. congrats to me and good work!!! Thank You Dr. Marshall for giving me back my life!!! In kindness, Shari Gold |
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Freddie Ash Member in Phase 3
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HI SHARI This is Fred in WV. It looks like you are doing very well. Keep up the great work and keep showing and telling the doctor about all the great things that are going for you with the Marshall Protocol. My B/P always ran low, even once when I had my son at my doctor back in the mid 1980s he dicided he wanted to see me also. My B/P then was only 70/50 and my wife at that time was an EMS person and she said they were to put pants on the legs to pump up the B/P. Since I have been on the MP my B/P runs about 110/58, mine has come up. Yea!! to the Marshall Protocol again for my recovery of my health. Remember, we are all in this together and I am pulling for us. Your friend in Sarcoidosis Freddie |
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Shari Gold Member in Phase 3
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Today, just as I sat down to eat lunch with my family at the Century City Mall in LA, I happily announced ... "Do you know what today is?" to my daughters Eva age 6, Dillyn age 9 and my husband ... "Today is my one year MP Anniversary!" Both of my girls clapped and said ... "yeah!!!!" Like I should be getting a cupcake w/ a candle in it or something and my husband, not being the overly showy guy didn't have to say much, he just smiled. He didn't have to say much because lately, he has just been hugging/ squeezing me alot, every chance he can get. It is his way of saying, "Thank God you are back!" My girls on the other hand are just happy to have a mom that can hang out in the sun a "bit more" and not need to lie down all the time just to feel human. This year has been SOMETHING to say the least. I want to thank everyone on this site who has posted their stories (they really kept me going) or posted a response to a question I had and shared their experiences. And it goes without saying, none of this would be possible if not for Dr. Marshall's groundbreaking work and all of the folks behind the scenes at the ARF. Stories like mine are the fruits of your labor! And I look forward to the day I am reading about this research in the LA Times (instead of the article from last Saturday about Vitamin D and the fact that we don't get enough ... sigh  ) I had a well meaning friend save the article for me and hand it over to say, "See! Read this." All I could think was, yes, bless you, I know you mean well. I don't feel the need to defend or counter any of this stuff anymore. I feel my health is reason enough and if they really want to have a serious conversation about it (and some people do) I always happily hand over a yellow sticky note with website information. I am currently holding steady in Phase 3. I continue to improve, though not without the ups and downs that the inevitable increase in abx provokes. I have had the hardest time with the Clindy for some reason. I know for others it is the zith, but for me ... it is the clindy. My dose these days: zith - 125 mg (every 10 days) mino -100 mg (every 48hrs) clindy - 1/3 of the 125 mg (every 48 hrs) Some of the most amazing improvements to date are: The swelling in my left breast (which sent me to an oncologist) is 90/95 % gone. It wasn't cancerous .. it was normal on ultrasound when I had it scanned right around the same time I was starting the MP. Within the first week of starting the dose of Mino on the MP .. I would get pain/ burning in area, then it would swelling there began to wane. Pain always came and went with upping dose of abx. Now, whatever was there is ... gone. Last trip to ob/gyn .. doc said all was good, nothing palpable. My neuropathy continues to improve. My arms before the MP were so weak. I couldn't extend them out and hold them. Folding clothes was very difficult, I would tire so easily. I couldn't blow my hair dry either. I am so much improved in my arm strength now. Again, abx provoked a lot of aching in these areas as they were improving. I am calm now. This was such a huge part of my illness. I don't feel like I have rage or ADD-like issues anymore. I am so relaxed and nothing seems like "a big deal" to me all the time. I am not procrastinating anymore. I cleaned my house the other day, top to bottom. My husband remarked about my "cleaning bug" and asked "why cleaning" all of the sudden. My answer was: because I can!!!! To that effect, going back to folding clothes .. I think I did about 6 loads of laundry a few weeks ago and sat there folding and folding. I was so happy to do it too! It is great to be able to clean my house and take care of personal chores. Even my chemical sensitivity is much improved. I don't get the immediate headache I normally would from using cleaning products or smelling people's strong perfumes. Still not my choice to smell "strong" things, but I can tolerate them at least .My sunlight sensitivity is also much better. I really haven't pushed it yet for a day in the sun uncovered. When I am outdoors, still have dark clothing, long sleeves, Noirs and hat, but I can be out and moving about somewhat and come home and not immediately head for the couch. This has been within the last few months. When I usually feel my worst in this regard is more related to cumulative sun exposure or if I up my abx and I am in the sun and herxing - then of course I do still want to be home and indoors. Also .. I would like to add that my Vit B12 deficiency really came to a head for me during this year. It was all there on my bloodwork/ paperwork and had been there for the last 10 years or so, but I think I slipped through the cracks b/c I am young. When I was running around to every doc under the sun (rheumatiologist/ neurologist/ internal MD) no one ever mentioned pernicious anemia, until my MD who agreed to try the MP w/ me. When I would have a BIG DIE OFF b/c of my abx dose increasing or the meds just ferreting out some of the Bugs ... I would get major pain/ buring in my neuropathy areas that would not go away (shoulders/ hips). There was one instance just after starting phase 3 and the clindy that my body could not recover from the herx. I felt like whatever had happened was trapped in my muscles (I guess it was) I slept and slept and slept and just ached in those nerve places. When I finally did get back in to my MD and we ran all bloodwork, I have been coming up consistently low/ enlarged RBCs and homocysteine levels kept climbing. Although I was reluctant at first, I gave into the B12 im injections (sort of a therapeutic probe) and it has made so much of a difference to me in terms of my herx. Now when I get a big whammy, I feel it for a day maybe a day an a half at the most, but then I'm over it. Definitely not everyone's issue here, but it has really helped me a lot. The best news ... I rarely get headaches anymore (only on really big herxes). My hair is growing in thicker/ healthier. My scalp is much improved. I have energy and strength is coming back again. I am not shakey/ twitchy anymore. Itchy, gunky eyese no more. This is weird ... I can wear my contact lenses so much longer these days ... that's a weird one. My chest breathing issue (that caused the panick attacks I had a while back) is better/ normal. I don't feel as if someone is pressing down on my chest and it is hard to breath. This is amazing. The burning in my shoulder blade area - gone. I can actually think and remember stories and not say .. ummmm what was I saying or why did I go in this room? Yes, was 37 and seriously thought I had Alzheimers! I know I am forgetting so much, because so many things fall back into place and you start to live again and consider the possiblities that you can actually have a life and therefore, stop dwelling on all of the things stopping you. Two weekends ago, I went to the boardwalk in Venice CA with an old friend and we rollerbladed for 2 hours. Something I used to love to do. We went at sun down and skated all the way to where the sidewalk ended. It was wonderful to feel good, smell the ocean again (yeah sense of smell coming back) and just feel so greatful for my health again. I know that in another year, I will probably look back at today and say ... wow! I thought it was good then, but now is even better ... So again, thank you to everyone out there who is on this journey. Keep up all your hard work, you will be rewarded. I am luckier than some here who were much worse off, but mine wasn't an easy journey either .. it is all relative, just take it one step at a time and you will see the payoff! Best, Shari |
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Deb Grabetz Member in Phase 3
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Shari, Your PR was just wonderful to read and for all of us on the MP, only strengthens the reason we are all here-- working hard! It was interesting to read about your B-12 deficiency because I have also had to take B-12 injections and they have helped me tremendously. When starting the MP my goal was to stay as MP friendly as I was able and so the B-12 was a little tough for me to step into. Yet, my doc saw my very low numbers and considering my state of health, said it would be beneficial for me. It has been. Clindy and I have not been able to become to an agreement yet we're still battling over who wants to be in charge and it seems Clindy wins! Zith on the other hand was my turning point to getting back on my feet! Take care and congrats Shari!Good for you! |
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Freddie Ash Member in Phase 3
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HI SHARI This is Fred in WV. Thanks for posting this great report and all the improvements you have received. Oh yes, congratulations on your 1 year aniversity on the Marshall Protocol. You have come a long way. It must have been nice to celebrate with you family. Keep up the great work. Remember, we are all in this together and I am pulling for us. Your friend in Sarcoidosis Freddie |
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BARNEY Moderator
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SHARI......CONGRATULATIONS on your MP anniversary!!! Shari and Deb, Deb said she is fighting with Clindy who is ruler.........that is the indication that you need to stop the Clindy and go to Benicar 40mg @4hrs w/20mg sublingual. It is not necessary to continue you ABX..............your immune system is kicked in and telling you something. You will enjoy not having the abx in your life anymore. Karna’s thoughts: Sometimes I just need reminding that it's not about winning the race, it's about just crossing that finish line. Drink plenty of water, xtra (sea) salt (regular salt is mostly chemicals) as needed, lots of rest while avoiding the sun and avoiding Vit D in your foods!!!!! HANG IN THERE, WE WILL MAKE BARNEY |
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Shari Gold Member in Phase 3
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Hi Everyone, Just chiming in here from "flu land". Yes .. I have the flu! I don't know if it is H1N1 or not, but it is the flu none the less. I thought I would post here because I know a lot of folks out there are a little worried about all the recent activity and Swine flu scares going on. No, I have not gotten a vaccination for the regular flu or H1N1. I have just been banking on my activated immune system and taking extra care like washing hands etc. I have been blessed this year with getting my health back to a level where I can participate in life a lot more so I am out and about a lot more these days. I am active at my daughters' elementary school and believe me ... I know I have been exposed to so much more this year than what I was exposed to last year. Here is what I can say about my symptoms/ progress: Last Tuesday night, I thought I had food poisoning. I had eaten a rarer piece of meat and thought ... maybe? But as the week progressed, my mild nausea (almost like what you might feel as IP) ran from that Tuesday night until Friday. And it was just sort of uncomfortable at best, I could still function and I never did get truly sick to my stomach. On Saturday, I developed a pretty nasty sore throat - rather quickly and I thougt it par for the course b/c my youngest had one and then it progressed to an upper respiratory infection. I laid low on Saturday, took it pretty easy and did my nettie pot/ salt water concoction. By Sunday, I felt okay, no stomach issues and sore throat had mellowed out, but I started to develop more of a sinus infection. Trying to stay as MP friendly as possible .. I tried a product called klear - which has xylitol in it. It is used to keep your nasal passages moist etc .. and help knock out some of the sinus bacteria. Well, don't know if that had anything to do with my sudden shift later that night, but by 1:00 AM, I was headed towards a full fledged flu. For the rest of that evening, my body temp heated up (very similar to what I experience when I take a big round of abx and my body gears up w/ major IP), I felt nauseous a few times and my sinuses got worse. Also, I was exhausted, but I could not sleep. It reminded me a lot of the insomnia I experienced at the beginning of the MP and I sort of felt really panicky. I contemplated taking a valium but I convinced myself to relax and watch a bad movie in an upright position and fall asleep. Today was pretty intense. My temp ran from about 100 to 101.3. I have had pretty consistent body aches that you expect with the flu. Again, just the feeling of being "hot" that I get when I go through intense IP is what it felt like today. I slept most of the day but did call my doc and had him call in some Tamiflu just to have on standby. I really have had no intention of taking - unless my health just became really unmanageable, but so far I have been fine. I have not had any more abx since Friday (right b/f my sore throat). I am taking a little break and letting my body deal with the flu challenge right now. What I find so VERY INTERSTING is how I feel right before my next dose of Benicar. Normally, I take my Benicar every 6 hours. That is the perfect time for my immune reaction. If I take it closer to the 4 hr mark, I get a weird IP that borders on panic and heart palpitations. I don't really know why, but I suspect that with all my VDR places docked, it might be over stimulating my immune response as I know I have heart inflammation, so I have to be careful, but lately, I have been pushing my dose of Benicar to every 8 hours b/c I am running low and did not want to run out before my next shipment arrives. So.... by the time my next dose is due or right around 7 hours, I can actually "feel" my body's need for the next dose of Benicar. With the flu - you get a really profound education on how to control your IP. So for me.. that magic 7 hours is TOO LONG! As soon as I take my dose of Benicar within about an hour, the body aches calms and my fever drops! It is truly amazing! And thanks to the MP what would normally progress to a gnarly bronchial infection ... hasn't even come close. I in no way would "want" the flu anytime again soon, but it has been a big time education for me for sure! Within he last hour of so (it is 10:30 pm) I started feeling like I got over the worst of it. It was a fast and furious onslaught -- but my body delbt with it and I think/ hope by tomorrow I will be functioning again. That's so much different from how I would react to flu in the past ... which usually lasted 5 days! I will comment again in another day or so ... when I am truly over it, but I feel so much better now! Shari |
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Shari Gold Member in Phase 3
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Just putting it out there .. perhaps Dr. Marshall wants to chime in on something like this Today I felt flu free. Pretty much, the flu part (ie body aches, fever) where much better. The flu part was very mild, in fact I believe it was really less than 24 hrs of flu feeling. What I am experiencing now is acute respiratory symptoms. Last night, I could feel a tightness in my chest (the sort of feeling one gets at onset to bronchitis). And of course by mid day, my I was starting to cough up some sputum (slight yellowish and a little green a few times). Right now, breathing is okay. And in general, my fever has waxed and waned today from 99.7 to 101.3. After reviewing the "pneumonia" portion of the ABCs of the MP .. I am a bit concerned. Obviously, if this is swine flu and could very well be (I did not get tested) the big concern would be a bacterial/ lower respiratory infection. I am a bit concerned right now that I am seeing sputum that has infection in it. I did phone my physician to let him know where I stood with all of this. He still stood by the fact that it is probably attributed to "virus" now (as my fever hasn't spiked too much) and is taking a wait and see approach. I am a bit uncomfortable with that given that I can't take Zithromax or probably any in that family as it would provoke really bad IP. I would like to at least have him have some sort of discussion w/ Dr. M or maybe a nurse moderator on how to proceed on my abx protocol given that I CANNOT TAKE zithromax at the prescribed dosage for pneumonia or bronchitis. This is obvioulsy worst case scenario here, but given that he needs to actually get in touch w/ Dr. M or someone at Autoimmunity Research Foundation, I am concerned I might lose some valuable time here and just get worse. And ... don't want to end up as another swine flu casualty -- as it was the bacterial portion that actually killed those folks - not the flu. Currently, I am not taking my regular abx dosage and have not had anything past last Friday so this is definitely not my normal IP. Any thoughts moderators or Dr. M? Thanks! Shari Gold |
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Dr Trevor Marshall Research Team 
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There are several antibiotics from different families listed in our ER guidance: http://AutoimmunityResearch.org/ER.pdf I hope things settle down quickly for you Shari. |
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Shari Gold Member in Phase 3
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Thanks Dr. M for the quick response. I am printing this out (don't know why I didn't have this one printed before). Cipro is an option -thank goodness. I am wondering since it isn't indicated on this sheet - are these at the normally prescribed dosages that one would take or will my doc need to modify that based on my activated VDR? The good news is .. if this had been me in the past, I would have already given into the lung infection. I usually got these acute infections at least 2-3x per year requring a z pak. So the fact that I am just sort of "teetering" right now is a testament to how far my health has turned for the better -amazing really! I will let you know when I am out of the woods for good Thank you! Shari |
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Shari Gold Member in Phase 3
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Hello all ... well I am happy to report that my lower respiratory infection has gone away more or less, things still breaking up (thankfully no infection) - but I bet you knew this was how this would end Dr. M As soon as I hit the panic button, it was on its way out. That's not to say that "whatever" it was that I had, wasn't really nasty. This virus/ flu lasted almost two weeks. Started w/ GI symptoms, turned into sore throat and then capped off w/ body aches/ fever and then the beginnings of bronchitis. Thankfully, I did not take additional abx. I coasted on the zith in my system and stopped my mino/ clindy to allow my body to deal. I did take my next dose of zith and mino last night. I skipped my clindy as that is what usually just kills me and I wanted to see "what I can tolerate" - so far so good. A little bit of a headache after taking last night, but pretty okay today. The only thing to note that is special in the last few days - this past Friday, after my fever had offically broken and I was feeling the best I had all week, I awoke with a bit of a rash. I have had a constant rash (raised bumps) on my chest, back and a little up my neck/ behind my ears. It comes and goes and has since I started to MP over a year ago. The rash I developed is a bit differnent, a little more diffuse but in the same general area as other bumps and this one is a little itchy. I am theorizing that at this point, it is some aspect of IP as my body was working over time this week (fever avg around 100). Not too concerned now, but will keep a close eye on things. Hopefully I will be able to get back to my phase 3 pre-illness dose in no time flat. Don't know about all of y'all .... but I am looking forward to the cooler weather and the approaching time change! Final words of advice ....wash those hands so you don't get this flu if you have to be out and about in the public !!!!! Best of health to all! Shari |
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BARNEY Moderator
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Hi Shari, ABX is no longer necessary, you could do Benicar only and not have a lot of the problems you are having. Your immune system will take the place of ABX. Sometimes we just need reminding that it's not about winning the race, it's about just crossing that finish line. (Karna’s thoughts) Drink plenty of water, xtra (sea) salt (regular salt is mostly chemicals) as needed, lots of rest while avoiding the sun and avoiding Vit D in your foods!!!!! HANG IN THERE, WE WILL MAKE IT!!!!BARNEY |
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Sallie Q Member in Phase 3 
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Shari Gold wrote: Hello all ... well I am happy to report that my lower respiratory infection has gone away more or less, things still breaking up (thankfully no infection) - but I bet you knew this was how this would end Dr. Mgood to know, Shari and love those gloves I have to go out at least 3 times a week, hardly ever touch anything without the little washable gloves I wear inside my leathers  Sallie |
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Shari Gold Member in Phase 3
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Hello all ... just thought I would share my fun filled IP'ing over the past week or so. Well, I have been out of the woods for a good week now, but was mostly out of the woods when the infection in my lungs only lasted for a day (yea MP!). What I have been dealing w/ this past week has been mostly stuff breaking up in my lungs (all clear stuff), but breaking up over the last week and a half. What has amazed me through all of this is the fact that prior to getting sick w/ my flu and then respiratory infection, I was noticing some regular stuff just breaking off and coming up (out of no where). I would not have a cold .. nothing and then out of the blue, something deep down in the depths of my lungs would prompt me to cough. Almost like little crackles or something. It would usually happend after I had endured some good IP for a couple of days. I knew/ know I have lung stuff (nothing ever presents on an x ray), but certainly some remodling going on down there. Last night, after upping my dose of mino I was waiting for the usual head tightening (I'm tired feeling) and all of a sudden my chest felt really heavy, then tight, and I felt very short of breath. Then, I would cough and it was productive. I felt nervous about falling asleep, like I might not be able to breath. So I stayed up til I could take my next dose of benicar and then I was okay. Wow!!! The MP process never fails to surprise me. Will definitely be dropping my does of mino back again and talking to my doctor about having on hand supplemental O2 for times like this. One other lovely side item ... since getting over the flu ... I woke up with sort of an acne-like rash all up and down my back, on my chest and a little up my neck behind the ears. Just these under surface, raised places in my pores. I really think I have a great deal of TH1 in my skin (as evidenced by my localized spot of morphea too on my back right shoulder blade). I'm a good year and a month into this and can definetely say I am feeling like the ugly duckling right now, but feeling so much better. I am just amazed by the strength I have gotten back in my arms/ back/ shoulders. The neuropathy is so much improved. And most of my hip aching/ burning is usually due to IP and not my everyday body any more. Still have so far to go and just coasting along in phase 3. I see why phase 3 can take a LONG TIME. You have to be careful with the IP for sure! I am currently at 125 zith (every 10 days), 50 mino (every 2 to 3 days) and (1/3 tab of clindy) (every 2 to 3 days). Should be getting blood work in November and will post then. Here's to everyone's health ... we'll get through this! Shari |
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BARNEY Moderator
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Shari, Glad you did okay thru your little troubling time, but you could put 20mg Benicar under tongue (as I do when I need relief) instead of being miserable till the next dose time, but you have to do what works for you. MP is so much the answer for all of us. HANG IN THERE, WE WILL MAKE IT!!!BARNEY |
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