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Shari Gold
Member in Phase 3
| Joined: | Sat Dec 27th, 2008 |
| Location: | Los Angeles |
| Posts: | 25 |
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Posted: Thu Mar 5th, 2009 11:31 |
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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
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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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PTLDS 19 years, FM, Chronic Fatigue, Peripheral Neuropathies, Spot of Morphea on Back Ph1 8/08 25D 20 1,25D 58, Ph2 10/08, Ph3 4/09
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BARNEY
Moderator
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Posted: Tue Mar 10th, 2009 23:42 |
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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
____________________
64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar40/20mg&xtra
as needed,stage5,
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Shari Gold
Member in Phase 3
| Joined: | Sat Dec 27th, 2008 |
| Location: | Los Angeles |
| Posts: | 25 |
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Posted: Fri Mar 27th, 2009 19:28 |
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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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PTLDS 19 years, FM, Chronic Fatigue, Peripheral Neuropathies, Spot of Morphea on Back Ph1 8/08 25D 20 1,25D 58, Ph2 10/08, Ph3 4/09
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BARNEY
Moderator
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Posted: Sat Mar 28th, 2009 03:48 |
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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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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar40/20mg&xtra
as needed,stage5,
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Shari Gold
Member in Phase 3
| Joined: | Sat Dec 27th, 2008 |
| Location: | Los Angeles |
| Posts: | 25 |
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Posted: Sat Mar 28th, 2009 07:04 |
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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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PTLDS 19 years, FM, Chronic Fatigue, Peripheral Neuropathies, Spot of Morphea on Back Ph1 8/08 25D 20 1,25D 58, Ph2 10/08, Ph3 4/09
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Aunt Diana
Moderator
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Posted: Sat Mar 28th, 2009 09:46 |
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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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Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, hydrocodone, lorazapam, benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux. Feb 08 Phase 3. 6/08 D <4, D1,25
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BARNEY
Moderator
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Posted: Sat Mar 28th, 2009 15:39 |
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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
____________________
64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar40/20mg&xtra
as needed,stage5,
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Shari Gold
Member in Phase 3
| Joined: | Sat Dec 27th, 2008 |
| Location: | Los Angeles |
| Posts: | 25 |
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Posted: Sun Mar 29th, 2009 01:45 |
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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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PTLDS 19 years, FM, Chronic Fatigue, Peripheral Neuropathies, Spot of Morphea on Back Ph1 8/08 25D 20 1,25D 58, Ph2 10/08, Ph3 4/09
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Shari Gold
Member in Phase 3
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Posted: Sun Mar 29th, 2009 03:36 |
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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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PTLDS 19 years, FM, Chronic Fatigue, Peripheral Neuropathies, Spot of Morphea on Back Ph1 8/08 25D 20 1,25D 58, Ph2 10/08, Ph3 4/09
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BARNEY
Moderator
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Posted: Sun Mar 29th, 2009 04:23 |
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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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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar40/20mg&xtra
as needed,stage5,
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Shari Gold
Member in Phase 3
| Joined: | Sat Dec 27th, 2008 |
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Posted: Tue May 26th, 2009 06:43 |
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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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PTLDS 19 years, FM, Chronic Fatigue, Peripheral Neuropathies, Spot of Morphea on Back Ph1 8/08 25D 20 1,25D 58, Ph2 10/08, Ph3 4/09
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DNStog
Moderator
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Posted: Thu May 28th, 2009 04:18 |
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| Shari..congrats on your improvements. Keep up the good work/healing..Donna
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Sarcoidosis/skin, joints, lungs, nerves, Raynauld's, uveitis, hypothyroid, sinus, wt. gain, Peradontal disease, GERD-hiatal hernia, breast ca 11/06, 25D7, Synthroid, Lexapro, eye vits, Milk Thistle, Quercetin, Rx glacier, cover up, 05/09 25D5, 125D11
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BARNEY
Moderator
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Posted: Thu May 28th, 2009 07:22 |
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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
____________________
64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar40/20mg&xtra
as needed,stage5,
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Shari Gold
Member in Phase 3
| Joined: | Sat Dec 27th, 2008 |
| Location: | Los Angeles |
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Posted: Thu May 28th, 2009 20:24 |
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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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PTLDS 19 years, FM, Chronic Fatigue, Peripheral Neuropathies, Spot of Morphea on Back Ph1 8/08 25D 20 1,25D 58, Ph2 10/08, Ph3 4/09
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Shari Gold
Member in Phase 3
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Posted: Tue Jun 2nd, 2009 16:50 |
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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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PTLDS 19 years, FM, Chronic Fatigue, Peripheral Neuropathies, Spot of Morphea on Back Ph1 8/08 25D 20 1,25D 58, Ph2 10/08, Ph3 4/09
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Deb Grabetz
Member in Phase 3
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Posted: Tue Jun 2nd, 2009 17:52 |
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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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Sarcoidosis/lungs, lymph,liver, GI, neuro, D125,42,D125,18 (5/09) Ph1,7/07, Ph2,3/08,cover up, NoIRs, low lux home,Back to work after 2 yrs; 4/07D25/11 1/08D25-0 Weaned Pred with MP/Massage
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Freddie Ash
Member in Phase 3
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Posted: Tue Jun 2nd, 2009 19:00 |
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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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Freddie: dx-sarc 2/82 lymph; skin, eyes, joints, esophagus, intestines, spleen, heart,lungs-meds digitek, L-thyroxine, nexium, furosemide, nattokinase36mg,eat cinnamon w/meals,25D-7; 125-D43
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Shari Gold
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Posted: Tue Jun 2nd, 2009 22:56 |
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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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PTLDS 19 years, FM, Chronic Fatigue, Peripheral Neuropathies, Spot of Morphea on Back Ph1 8/08 25D 20 1,25D 58, Ph2 10/08, Ph3 4/09
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Shari Gold
Member in Phase 3
| Joined: | Sat Dec 27th, 2008 |
| Location: | Los Angeles |
| Posts: | 25 |
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Posted: Tue Jun 9th, 2009 22:16 |
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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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PTLDS 19 years, FM, Chronic Fatigue, Peripheral Neuropathies, Spot of Morphea on Back Ph1 8/08 25D 20 1,25D 58, Ph2 10/08, Ph3 4/09
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BARNEY
Moderator
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Posted: Tue Jun 9th, 2009 22:59 |
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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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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar40/20mg&xtra
as needed,stage5,
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