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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 Jun 12th, 2009 01:42 |
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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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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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Freddie Ash
Member in Phase 3
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Posted: Fri Jun 12th, 2009 02:20 |
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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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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
Member in Phase 3
| Joined: | Sat Dec 27th, 2008 |
| Location: | Los Angeles |
| Posts: | 25 |
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Posted: Fri Jun 19th, 2009 03:45 |
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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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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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Freddie Ash
Member in Phase 3
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Posted: Fri Jun 19th, 2009 13:53 |
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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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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
Member in Phase 3
| Joined: | Sat Dec 27th, 2008 |
| Location: | Los Angeles |
| Posts: | 25 |
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Posted: Sun Aug 9th, 2009 04:22 |
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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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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: Sun Aug 9th, 2009 12:43 |
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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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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: Sun Aug 9th, 2009 15:08 |
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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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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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BARNEY
Moderator
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Posted: Sun Aug 9th, 2009 16:48 |
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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
____________________
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: Tue Sep 29th, 2009 06:40 |
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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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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: Wed Sep 30th, 2009 05:12 |
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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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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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Dr Trevor Marshall
Research Team
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Posted: Wed Sep 30th, 2009 05:38 |
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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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| Location: | Los Angeles |
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Posted: Wed Sep 30th, 2009 07:33 |
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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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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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| Location: | Los Angeles |
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Posted: Mon Oct 5th, 2009 01:53 |
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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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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: Mon Oct 5th, 2009 02:12 |
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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
____________________
64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar40/20mg&xtra
as needed,stage5,
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Sallie Q
Member in Phase 3
| Joined: | Mon Jan 26th, 2009 |
| Location: | Australia |
| Posts: | 61 |
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Posted: Mon Oct 5th, 2009 05:52 |
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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. M As soon as I hit the panic button, it was on its way out.
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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 !!!!!
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good 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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20yrHotFlushSjogrensCFSb.cancer1990stress57-83 60%dysreg.vD 13.2 Sep08ph1 NoIRlowLux JanModPh2 May09Ph3 25DMay19ng/ml,Aug11.2
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Shari Gold
Member in Phase 3
| Joined: | Sat Dec 27th, 2008 |
| Location: | Los Angeles |
| Posts: | 25 |
| Status: |
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Posted: Sun Oct 11th, 2009 23:56 |
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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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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: Mon Oct 12th, 2009 00:22 |
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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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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar40/20mg&xtra
as needed,stage5,
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