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sstarli
Member
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Posted: Tue Feb 14th, 2012 02:55 |
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My questions are:
Can the Dr. prescribe the benicar and I can get it filled at the pharmacy or do I have to get a prescription from her and order the meds from another source? I am going to need help with that too.
I so appreciate what you all are doing, thank you from the bottom of my heart.
I contacted Lyme Disease in 2009 in No. CA. I am living in Southern Mississippi until I get my health back. I have deterioated in the year since I had the lamendectomy.
When I first got out of the rehab hospital I could get around pretty well on my walker. Now I am doing well if I can get from the bathroom door to the shower chair and even that is scary I can't feel my right leg at all and my left one is dead and tingly but I can feel it a little. So I've gotten a lot worse this last year.
I have some welding glasses if my Noirs don't come in before.
I've been weaned off the predisone for about a month I lost 23 lbs. of bloat from taking "drugs". I have to take antibiotics quite often fr UTI's I have't had to take pain medication since the only pain I have is numb/dead/tingling legs and feet but it isn't unbearable just agrivating. I would rather put of with that than take medication with all the bad side effect.
I had a blood clot in my left leg, right behind my knee and was hospitilized for a week. She put me on coumidin but I took myself off that and started taking an asprin every day. Do I need to stop the aspirin before starting the MP? I have a new primary care Dr. and she wanted me to take an antidepressant. I have never taken one and don't want to take this one but I have been for over a week. Do I need to stop taking that? Do I need to have pain pills just in case I need them during herxing.
My former Dr. wanted me to take vit. D. and magnesium suppliment and I refused and tried to tell her why and she said "I will be your doctor if you want me to but you have to do what I say" and I told her "you are fired"
I have a new Dr. she knew about the MP and D Metabolites test. She said she had two other patients who have lyme disease. She said she was going to research the MP and let me know on my next visit and that is next week.
Thanks so much for helping me learn to get around here....these computers are something else, lol. I get so lost in cyberspace it's hard to find my way back so if you will give me some pointers so this place will be easy to find I will so appreciate it.
Thank you,
sstarli
____________________
lyme disease, neurosarcoidosis,neuropathy, bladder and bowel incontinence, constant uti, toenails curling up and peeling back, skin dry and flakey, hole in retina in right eye and no telling what else.
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Sallie Q
Board Staff
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Posted: Tue Feb 14th, 2012 03:35 |
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this is a bit 'power user', but this post will always be here in the older part of your thread if you want to check it 
I wish I had figured it out far earlier in my MP years 
getting around
If you have joined the discussion on a number of threads, and you get a bit lost but can still find one of your own (Reply)s
you may 'right-click' on your own user name at the far left of your reply, to access your profile... where you will find tabs which allow you to see a list of your own 'New Topics'
and more usefully (Posts) with a list of 'Reply's you have made to any topic on the site.
The most recent will be at the top. You can click the link after the > symbol to go direct to that thread...... which may not be showing if your post is older than a few days (or hours on a busy forum)
I will not repeat the instruction for accessing your profile, it is on SuperLuke's thread 
sstarli wrote: My questions are:
Can the Dr. prescribe the benicar and I can get it filled at the pharmacy or do I have to get a prescription from her and order the meds from another source? I am going to need help with that too.
Do I need to stop the aspirin before starting the MP?
I have a new primary care Dr. and she wanted me to take an antidepressant. .....
I have been for over a week. Do I need to stop taking that?
Do I need to have pain pills just in case I need them during herxing.
sstarli
we are all volunteers here, so it may take a few hours or days before you get a reply to your question(s)
____________________
index to MPKB | MP Sep'08 depression'65, breast cancer'90, Sjogrens| sx CFS, low adrenal,ADD,migraine,BCC; mild stroke, RA| MP conferences
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sstarli
Member
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Posted: Tue Feb 14th, 2012 17:19 |
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Hi,
I think I'm getting the "hang of it" ? Thank you so much for the easy to follow instructions
No problem with the answers to ?? I will not be able to start the protocol for a couple of weeks maybe more, depends how I have to get the medicine.
Hope everyone gets better and better and better.
sstarli
____________________
lyme disease, neurosarcoidosis,neuropathy, bladder and bowel incontinence, constant uti, toenails curling up and peeling back, skin dry and flakey, hole in retina in right eye and no telling what else.
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Cynthia Schnitz
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Posted: Tue Feb 14th, 2012 17:48 |
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sstarli wrote: Can the Dr. prescribe the Benicar and I can get it filled at the pharmacy or do I have to get a prescription from her and order the meds from another source? I am going to need help with that too.
Most people are ordering their olmesartan from Canadian on-line pharmacies because of the insurance hang-ups, which are major. It is way cheaper than Sankyo Benicar, but you will still need a prescription, and you can expect the shipment to take about a month, so make two 180 tablet orders of the generic olmesartan, then when it arrives, put in another order, and every time you run out of a 180 pill order, put in another order. This will leave you with a minimum of 180 tablets at all times to allow for interruptions in delivery that are possible given the situation.
http://mpkb.org/home/mp/olmesartan/buying
I have some welding glasses if my Noirs don't come in before.
I've been weaned off the predisone for about a month I lost 23 lbs. of bloat from taking "drugs". I have to take antibiotics quite often fr UTI's I have't had to take pain medication since the only pain I have is numb/dead/tingling legs and feet but it isn't unbearable just agrivating. I would rather put of with that than take medication with all the bad side effect.
The glasses should work. Glad you have already weaned from the prednisone, as that is a great difficulty for many starting the MP. But, you need to be off the antibiotics (ABx), with a few exceptions for those ABx which do not interact with olmesartan, for the appropriate length of time BEFORE starting the olmesartan. Most ABx only require only a few days of clearance before starting the olmesartan. But Azithromycin is the exception, so you might want to tell us which ABx you are on.
I had a blood clot in my left leg, right behind my knee and was hospitilized for a week. She put me on coumidin but I took myself off that and started taking an asprin every day. Do I need to stop the aspirin before starting the MP?
This one appears to be a bit more complicated. It would probably be best if you read this section. http://mpkb.org/home/othertreatments/anticoagulants
My former Dr. wanted me to take vit. D. and magnesium suppliment and I refused and tried to tell her why and she said "I will be your doctor if you want me to but you have to do what I say" and I told her "you are fired"
I like your spunk. That is truly what it takes to be successful on the MP. Magnesium is OK to take in moderation, as is calcium, but potassium may not be something for most MPers, as it is conserved due to the olmesartan, and can occasionally go too high.
I have a new primary care Dr. and she wanted me to take an antidepressant. I have never taken one and don't want to take this one but I have been for over a week. Do I need to stop taking that? Do I need to have pain pills just in case I need them during herxing.
Antidepressants are generally OK on the MP.
http://mpkb.org/home/othertreatments/antidepressants
Pain meds are generally not something to plan ahead for, and can be discussed with your doctor as needed. However, you may want to plan ahead to have on hand, Benadryl, pills and cream, Guaifenesin, and Quercitin. You will find some comments on these here,
http://mpkb.org/home/mp/managing_immunopathology
I have a new Dr. she knew about the MP and D Metabolites test. She said she had two other patients who have lyme disease. She said she was going to research the MP and let me know on my next visit and that is next week.
One of the best documents for your doctor to read is,
http://autoimmunityresearch.org/preprints/Proal2010CellularMolecularImmunologyPreprint.pdf
If you did not give this to her, you may want to see that she gets it before your next meeting. There is a much more detailed document if she really looks interested, but I would not give it to her yet, as it is a tough thing to get thru, and probably too much in the beginning. It is a chapter of a new text book, published just recently, and the preprint of the chapter is here.
http://autoimmunityresearch.org/preprints/Proal_MHB_Chapter_preprint.pdf
This is a page you may want to refer to when considering your options where non-MP meds are concerned. Follow the links for each category to find out more detail.
http://mpkb.org/home/othertreatments
Great to have you here, Cynthia
____________________
MP start 10/08 (no breaks) | Spondylitis 97, early Diverticulosis 98, early AMD 08, Calcium anomaly 95, TypeII Diabetes(?) 02 | 25D=10.1ng/ml 12/12, (preMP 125D/25D=47/43) | My progress
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sstarli
Member
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Posted: Tue Feb 14th, 2012 19:27 |
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Hi Ms Cynthia,
Thank you so very much for your very informative answer to my many questions. I had just been reading on the MP learning site about other medications and the protocol.
I don't have feeling in my body from my bra area to my toes so I didn't notice any pain in my leg but I had no redness just swelling, in my left foot and leg only, the right one was fine. I never did have any redness or hot feeling so I am not so sure it was as serious as I felt they thought it was. It seems to have resolved itself but I have been taking an asprin.
How long before I start the MP do you think I need to stop taking the asprin?
The last antibiotic I was taking was doxycycline for a sinus infection but I finished that a few days ago.
I am not on any as of right now but I have to go to the urologist on Friday and I can feel that I have another uti. Home health has dumped me too since I refused to take the coumidin and started taking an asprin so I don't know if I can get someone to put a cath tube that has to be changed once a month. I will ask my new doc about that. I haven't told her that I fired my last Dr. and got dumped by home health, I hope I don't have to tell her but I might if taking I have to take antibiotics for uti's.
Trying not to "live on batteries" is not easy in this "take a pill for that" age we live it.
I also forgot to tell you about my horrendous night sweats and low grade temp most of the time. I've been having those since I contacted Lyme Disease.
I know I'm forgeting something but I will reread this and get back to it later.
Thanks again for what you are doing here.
sstarli
____________________
lyme disease, neurosarcoidosis,neuropathy, bladder and bowel incontinence, constant uti, toenails curling up and peeling back, skin dry and flakey, hole in retina in right eye and no telling what else.
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Cynthia Schnitz
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Posted: Wed Feb 15th, 2012 00:17 |
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If you have not read this, I am sure you will want to. Some ABx are better than others and will not keep you from starting the MP. Just make sure you never let the doctor give you Azithromycin. It stays in your system much too long, and will interact badly with the MP. Lots of MPers have UTI problems, real or IP.
http://mpkb.org/home/symptoms/urinary
"I also forgot to tell you about my horrendous night sweats and low grade temp most of the time. I've been having those since I contacted Lyme Disease."
We have many here with the night sweats and low grade temperatures. This kind of thing could get worse on the MP before resolving, sorry to tell you, but it does eventually resolve.
Cynthia
____________________
MP start 10/08 (no breaks) | Spondylitis 97, early Diverticulosis 98, early AMD 08, Calcium anomaly 95, TypeII Diabetes(?) 02 | 25D=10.1ng/ml 12/12, (preMP 125D/25D=47/43) | My progress
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sstarli
Member
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Posted: Wed Feb 15th, 2012 01:02 |
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____________________
lyme disease, neurosarcoidosis,neuropathy, bladder and bowel incontinence, constant uti, toenails curling up and peeling back, skin dry and flakey, hole in retina in right eye and no telling what else.
Cynthia Schnitz
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Joined: Mon Jul 28th, 2008
Location: N., Arizona USA
Posts: 2113
Status: Online
Posted: Tue Feb 14th, 2012 19:17
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Hi,
I am going to tell the urologist that I am beginning the Marshall Protcol. I have been taking cipro from time to time. If he gives me an antibiotic I am going to discontinue before beginning the protocol and see what the minocycline does.
"
We have many here with the night sweats and low grade temperatures. This kind of thing could get worse on the MP before resolving, sorry to tell you, but it does eventually resolve.
I think I'm prepared for "getting worse before it gets better" I've had some pretty rough times since this began so if it's worse than that it will make me strong if it doesn't kill me and it won't.
Sometimes I have to change my night clothes and if I was able to do it myeslf I would change my bedding but I don't want to wake up my dear friend who is taking care of me. She puts extra night clothes on my bed in case I wake up soking wet. She tells me to wake her up but I feel like such a burden as it is and won't disturb her at night.
I have been thinking about all the symptoms that I just chalked up to "old age" such as facial tingling and a excruciating pain right where my bra goes it starts right under my sholder blade and used to go down my left arm and make me feel like vomiting.
This symptom returned after I discontinued the Pred. Now it doesn't go down my arm it seems to go down toward my waist; it doesn't lastt as long as it did and it doesn't seem to be as painful. That started in 2006 before I got the Lyme disease so I've decided the lyme triggered the sarc that has probably been present in my body since childhood. Weak lungs runs in my family, my mother's sister had TB and several of my uncles died with emphazema.
Probably, if they had just left it alone it may be disolved by now. I was getting neuropathy before I had the biopsy but I could still walk with a walker and knew when I had to go to the bathroom. If if if.....
Thanks a bunch for what you are doing....we could not make it without you.
sstarli
____________________
lyme disease, neurosarcoidosis,neuropathy, bladder and bowel incontinence, constant uti, toenails curling up and peeling back, skin dry and flakey, hole in retina in right eye and no telling what else.
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Sallie Q
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Posted: Wed Feb 15th, 2012 03:07 |
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just "old age" rings a bell,
born in '39, I was thinking that very thought when I as I got toward fifty, I lucked out and got some paid work.
I realised that one of the older women there was fifty and still going out in the evening every week or more often 
so I had a re-think on old age, particularly at fifty on meeting my current husband and then his older sister who could literally run rings around me, she is now a new widow at 84 and still self sufficient, I saw her a week ago.
That is, or should be, normal aging
NB do not overdo the "gets worse before it gets better" thinking, our aim is if possible to go through MP so conservatively that it does not get worse so much as produce new symptoms which will need new skills to ameliorate
____________________
index to MPKB | MP Sep'08 depression'65, breast cancer'90, Sjogrens| sx CFS, low adrenal,ADD,migraine,BCC; mild stroke, RA| MP conferences
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Cynthia Schnitz
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Posted: Wed Feb 15th, 2012 04:31 |
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I think you also need to realize that what you really have is TH1 disease. You should stop thinking of your diseases as diseases. They are really symptoms sets, and are a bad idea to break them up that way anyway, because no one has perfect symptom sets. Doctors have a hard time diagnosing because everyone has more symptoms than really fit into any of their 'disease' symptom sets, or are missing many of the expected symptoms of a disease they would like to home in on. So it is wrong to think of one disease bringing on another disease. You are just getting worse TH1 disease with more total symptoms with the passing of time, stress, and who knows all.
The Lyme too was just a single discontinuous step forward into worse TH1. Best not to duel too much on the disease names, except to know that there are consequences in what needs to be done to support you for various symptoms.
I know what you mean about old age, and I think we all can relate to that. Take a look at the list of things I saw going away on the MP by clicking on the link in my signature line. I was shock to realize that these were all related, and a single protocol was taking care of all of them. I still am dealing with some of my more major problems listed in my sig line, but even these are much improved. Take heart that you will gradually see your 'old age' becoming a 'young age' again, or at least younger. I certainly am.
Cynthia
____________________
MP start 10/08 (no breaks) | Spondylitis 97, early Diverticulosis 98, early AMD 08, Calcium anomaly 95, TypeII Diabetes(?) 02 | 25D=10.1ng/ml 12/12, (preMP 125D/25D=47/43) | My progress
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Cynthia Schnitz
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Posted: Wed Feb 15th, 2012 15:57 |
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Did you see the line in my Anniversary post?
"Nerves in hip joints, non functional pre MP, work well now.  "
Also note the returning sense of smell, and the returned ability to sense temperature and humidity with my nose.
These are, I am certain, improvements in mynervouss system. Either in the brain or in the nerve conduction, there has been repair brought on by the MP.
So, take hope, Cynthia
____________________
MP start 10/08 (no breaks) | Spondylitis 97, early Diverticulosis 98, early AMD 08, Calcium anomaly 95, TypeII Diabetes(?) 02 | 25D=10.1ng/ml 12/12, (preMP 125D/25D=47/43) | My progress
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sstarli
Member
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Posted: Wed Feb 15th, 2012 16:01 |
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I was born in 40. You will never know how much all this means to me. I was ready to die. To me....this is not living. If I have to live without walking,, driving, and caaring for myself I will not do it.
Until this I was young, I owned a nightclub at 50 was raising my grandson whom I had since birth, at the same time.
At 64 I lost the 80 lbs I had gained after quitting smoking. My job as a maw maw was done and I went to Las Vegas and wound up in northern CA.
I became a hippi a hiker and a health food nut. Then in 2009 contacted the tick and got old overnight.
The doctors treat me like I dont' have a brain just because I'm 71.
Then in 2011, July I think it was I found Dr. Marshall's site when I googled Sarcoidosis. I was esstatic and just knew the Stop Sarcoidosis community would be thrilled to hear about this; they threw me off the site, lol.
I did meet a real cool lady on that site though that said she knew of people who were getting well doing this protocol but it wasn't covered by most insurance companies and most people had to take the meds the govt. approved of.
I started doing research and reading everything I could and Here I Am!! and Im so happy to be here. I can't wait to get started. On thing that TH1 has taught me is patience.
I've rethought old age since I found the MP. I told my dear friend, who's going to help me, and takes care of me now. "For sure I'm not going to be able to live like this. If Dr. Marshall and the Research Foundation is right I could live another 20 or more years....really live, not exist in a bed or wheel chair getting bed sores and god only knows what else, living on pills that prolong suffering having nothing what so ever to do with health. She agrees, she took care of both her parents before they died.
I believe if we live accordihg to the MP we can live for a long long time. Science has come a long way and the human genome is amazing and after all most scienctist have no idea why we don't live forever and I think Dr. Marshall knows TH1 is probably one of the reasons. The rest are still to be discovered. So what if we have to take benicar and antibiotics from time to time. People on "batteries" have to take a handful everyday and still feel like crap, for lack of a better word, lol
The life you describe that your sister in law has is the one I had envisioned for me. This was a "sucker punch' I had no idea I was sick until I started having symptoms after the tick bite.
I'm still trying to wrap my mind around that one, I'll get though old dogs new tricks comes to mind a lot here, lol.
I'm readng everything I can so I will be prepared and once again I am so appreciative of what you are doing and hope soon I will be able to send in progress reports.
____________________
MP Sept'08| breast cancer'90; Sjogrens| symptoms CFS'70; stroke; ADD,visual migraine| 25D=12ng/ml@Sep'11 | MP INFO see http://mpkb.org/home/index#site_map |
Cynthia Schnitz
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Joined: Mon Jul 28th, 2008
Location: N., Arizona USA
Posts: 2117
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Posted: Tue Feb 14th, 2012 23:31
Quote
Reply
I think you also need to realize that what you really have is TH1 disease. You should stop thinking of your diseases as diseases. They are really symptoms sets, and are a bad idea to break them up that way anyway, because no one has perfect symptom sets. Doctors have a hard time diagnosing because everyone has more symptoms that really fit into any of their 'disease' symptom sets, or are missing many of the expected symptoms of a disease they would like to home in on. So it is wrong to think of one disease bringing on another disease. You are just getting worse TH1 disease with more total symptoms with the passing of time, stress, and who knows all.
The Lyme too was just a single discontinuous step forward into worse TH1. Best not to duel too much on the disease names, except to know that there are consequences in what needs to be done to support you for various symptoms.
I know what you mean about old age, and I think we all can relate to that. Take a look at the list of things I saw going away on the MP by clicking on the link in my signature line. I was shock to realize that these were all related, and a single protocol was taking care of all of them. I still am dealing with some of my more major problems listed in my sig line, but even these are much improved. Take heart that you will gradually see your 'old age' becoming a 'young age' again, or at least younger. I certainly am.
Cynthia
____________________
lyme disease, neurosarcoidosis,neuropathy, bladder and bowel incontinence, constant uti, toenails curling up and peeling back, skin dry and flakey, hole in retina in right eye and no telling what else.
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sstarli
Member
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Posted: Wed Feb 15th, 2012 18:56 |
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Yes I did see your anniversary post I have lost the sense of smell (blessing since i have bowel incontinence) lol I hope and pray I get that back (control of bowel and bladder incontinence. That is another question....do I need to be doing physical therapy or is it okay to just lie here as that is what I feel like doing? I get up to take a shower once a week.
I was getting strong but was hospitalized for the blood clot that seemed to be the starting point of my loss of strength. I get exhausted just getting in my wheel chair.
I;ve looked for this information on the learing site and seems to me they say save your energy for when you feel like exersizing. Of course that may be just what I want to hear. I can't seem to find it again.
My legs are still strong but the right one is a lot weaker than my left o ne and I don't have any feeling in it at all. If you tell me to start exersizing again i will give it another shot, if not I will just lie here and rest, lol.
I had a sister in law that died of Charot,Marie,Tooth disease. She was a talking head by the time she died, she had bed sores the size of dinner plates, she had to be resucatated all the timme. She cost the Medicare/medicaid Program 30,000.00 a month for years for a 24/7 nurse to make sure her machine worked properly at night and to irrigate or something like that to make sure she didn't choke. it was horrible for me so I didn't go around often.
When she and I were teen agers we vowed to each other not to allow each other to be hooked up to a machine to live.
That is one of the reasons I went to Las Vegas. Her father had the disease she had it too. She was living with my neice in Vegas and had to be rushed to the ER and resusatated; she was in ICU and all of her 10 children were there deciding whether or not to "Unhook her". When I got there I got in on the meeting with the Doctor. I asked if I could go talk to her, alone. When I walked in to see her she had a tube in a hole that had been cut in her throat. She had a dry erase board and marker. I said "do you remember this" and I put my two index fingers together as we had done the "blood exchange oath to each other that we would never let that happen" she shook her head yes, she remembered. I said "did you change your mind"? and she shook her head Yes. We talked about it in detail. How it was going to be hard work to keep her muscles from atrofeting (sp) because once they were gone they would not come back. That was her decision and I told the DR and her children that she still had an active mind and she was making the decisions.
Anyway she lived, if you want to call it that, until sept. of 2011. She was not able or willing to exersize and keep her muscles strong and she became unable to get out of bed by herself and the only thing she could do was sit in the wheelchair with a patch on her throat and a machine breathing for her at night. During the day she could breathe by herself most of the time sometimes the nurse had to do something so she wouldn't choak. I don't know what I couldn't watch.
7 years hooked up to a ventalator. Her brain was good but her body was destroyed by th1 aka CMTD??? I'm still trying to get that one.
I can't get into some parts of the study site i get the wrong password and name. What am I doing wrong. On the curemyth1 I am always logged in as sstarli but not on the learning site and others that I try to access it says Iam not a member. ???
Thanks and forgive my "story telling" but I think it's part of what brought me to this site.
sstarli
____________________
lyme disease, neurosarcoidosis,neuropathy, bladder and bowel incontinence, constant uti, toenails curling up and peeling back, skin dry and flakey, hole in retina in right eye and no telling what else.
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Sallie Q
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Posted: Wed Feb 15th, 2012 21:30 |
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patience, starli
there is a team of three or four processing membership applications for the MPStudySite,
remember everyone here is in various stages of convalescence... some still working from their beds. Your personal topic will be kick-started by someone else, after which you will have similar privileges to this site
The MPKB is a closed database run by PaulAlbert and another team, you can use it to search, but not to comment.
The Bacteriality site is independent and belongs to Ames (Amy) a young student who recovered her health doing MP.
Today's power user tip
When quoting someone else's post, use the (Quote) tab, instead of the (Reply) tab. You may also delete from the quote those parts which are not pertinent to your reply.
To quote something you need to type in: after checking for typing errors, select the quote using your mouse, then click on the quote marks (at top, 3rd from right).
note: you will see from the same 2 lines at top I also used B, I, U and AB for this reply.
____________________
index to MPKB | MP Sep'08 depression'65, breast cancer'90, Sjogrens| sx CFS, low adrenal,ADD,migraine,BCC; mild stroke, RA| MP conferences
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Cynthia Schnitz
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Posted: Thu Feb 16th, 2012 02:07 |
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Exercise is not part of the MP. Sufficient rest IS part of the MP. While your body's immune system is working over time on the MP, you will need lots of rest.
Many of the people here who are helping out by spending a lot of time on the computer are partly doing it because they really can't do much of anything else. This was certainly true for me. I called it lethargy. I just could not face getting up out of my chair for the first 2 years. I am sure, as occasionally happened out of necessity, if I got up out of my chair and started to do something, I would quickly collapse from exhaustion. But, as long as I stayed in that chair, I felt just fine. It was all the reading I did over those years that help me to understand the MP as well as I do.
Thanks for the story. I have heard a lot of stories since spending time on these forums, and I certainly have a different view of growing old now. I am quite convinced there is no such thing as growing old gracefully. That is an image probably created by a younger person. Growing old is just bad and a lot worse for some. One of the exciting things I now believe I am going to live long enough to see is what old age looks like for people who have been thru the MP and get old without old age diseases.
Cynthia
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MP start 10/08 (no breaks) | Spondylitis 97, early Diverticulosis 98, early AMD 08, Calcium anomaly 95, TypeII Diabetes(?) 02 | 25D=10.1ng/ml 12/12, (preMP 125D/25D=47/43) | My progress
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sstarli
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Posted: Thu Feb 16th, 2012 22:29 |
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Cynthia Schnitz wrote:
Exercise is not part of the MP. Sufficient rest IS part of the MP. While your body's immune system is working over time on the MP, you will need lots of rest.
That is exactly what I needed to hear. I knew I read that somewhere but I couldn't find it to give to my family. They want me to do physical therapy and I just don't have the energy it takes. Now they will believe me; They are very supportive and excited that I will be getting well instead of dying. We don't care if it takes 20 years as long as I'm living and not just breathing.
Many of the people here who are helping out by spending a lot of time on the computer are partly doing it because they really can't do much of anything else. This was certainly true for me. I called it lethargy. I just could not face getting up out of my chair for the first 2 years. I am sure, as occasionally happened out of necessity, if I got up out of my chair and started to do something, I would quickly collapse from exhaustion. But, as long as I stayed in that chair, I felt just fine. It was all the reading I did over those years that help me to understand the MP as well as I do.
Yes, that is what led me here, all the time I have to do research on what has happened to me. I am so grateful that I found this place. I did Nopala, looking for another way. I almost did Digestacure, but decided that was for sure a scam. I went to a natural healer in OKC
I knew the minute I found the MP that I had found what I was looking for. I had promised my children that I would do the steriods for a year and if I was remarkedly better I would continue.
If I was not better or worse I was going to do something else. I had no idea what. I did Nopala, and almost did Digestacare but it cost over 500.00 and I decided to keep looking.
Thanks for the story. I have heard a lot of stories since spending time on these forums, and I certainly have a different view of growing old now. I am quite convinced there is no such thing as growing old gracefully. That is an image probably created by a younger person.
I think "Growing old gracefully" as well as "Golden years" is a bunch of b.s. lol
Growing old is just bad and a lot worse for some. One of the exciting things I now believe I am going to live long enough to see is what old age looks like for people who have been thru the MP and get old without old age diseases.
Me too!!!
I am so excited to be a part of this and I'm looking forward to the day I will be doing what you and the other volunteers are doing.
sstarli
you didn't mean to put all that in the box with Cynthia
I can not get rid of the box & quote marks either; it pays to put a few line returns in before anything else; most of us learn that the hard way
Tip for the day: type up what you want to say on a notepad or wordpad, then copy over..... if the worst happens and youreply ocmpletely disappears, you can ststart over  Sallie I just added the boxes where they belonged, so now it is easier yet to read. Getting the boxes right is a bit of work, but can be done using opening in a separate window, using the 'Quote', delete, copy, and undelete to pick up th pieces you want. A much easier way would be to use the 'Quote', then type your responses in a different color, so we know what is your comment, and what is the original quote. Cynthia Last edited on Fri Feb 17th, 2012 14:56 by
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lyme disease, neurosarcoidosis,neuropathy, bladder and bowel incontinence, constant uti, toenails curling up and peeling back, skin dry and flakey, hole in retina in right eye and no telling what else.
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sstarli
Member
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Posted: Fri Feb 17th, 2012 23:22 |
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Thanks Cynthia
I'm gonna get the hang of it Thanks so much for your easy to follow instructions
Monday is the day I go to the new Dr and hopefully get the prescriptions I checked out the links for the online pharmacy's and am just waiting for the scripts
Still have to get the Noirs I have never been photosensitive so we'll see if I am or not I was told my my last dr that my body was totally deficient of Vit D The new doc is going to do the D metabolites test hopefully, Monday
I will let you know Monday if it's a go or if I have to look for someone else, lets pray she will do it I really think she will becuase she knew about it and she knows I'm going to do it anyway
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lyme disease, neurosarcoidosis,neuropathy, bladder and bowel incontinence, constant uti, toenails curling up and peeling back, skin dry and flakey, hole in retina in right eye and no telling what else.
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sstarli
Member
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Posted: Sun Feb 19th, 2012 22:59 |
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Hi Ms Cynthia,
I am feeling really sick today. I have what kinda looks like shingles on my upper thigh and some below my knees. I have had a sinus drainage that makes me sick to my stomach
I have absolutely no appitite, last tim I weighed I had lost 23 lbs and I'm sure I've lost another 5 I can't seem to get hungry
I am also having a hard time getting the ones who shop and cook to realize that I can't/won't eat anything with vit D I asked if they would look for milk that was not fortified with Vit D I am going to have to look up that list of foods that I can have and make a list for them. I really don't have the energy to fix my own food.
I will be praying that is one of the first things to be addressed is spinal inflammation. I'll be happy to see any improvement but I sure am hoping and praying that I will regain the ability to walk and drive Please tell me this is possible. Even if it takes 5 or more years I will only be getting healthier and younger.
I've taken 2 tylenolfor the past two days for a horrendous head ache, sinusitis I'm sure. I don't like to take those pills but this is new, I don't usually have head aches. and I'm a weenie for pain. I've been "fortunate" I guess that I have no feeling in my lower extremities therefore no pain. The rash that I think may be shingles isn't painful it's just red and blistery.
I'm turning into a hypocondriac I think everything I get is the Lyme and sarc destroying my body and it's imperritive that I begin this journey and I will tell my Dr tomorrow that. I want to order the medication asa I get the script.
I have checked out the pharmacy links you sent and I'm just waiting on the paperwork.
Do you think my feeling like crap, low grade temp aching arms is "normal" when stopping all the "batteries" i.e predisone, coumidin, amd antibiotics. I am still taking the antidepressant, and an asprin. I'll discontinue those when I order the medication. Is two to three weeks long enough?
Just wanted to keep in touch and say thanks again....I have been reading old stories of recovery and it's awesome what you are doing for those who had no hope.
We will get better and better and better
sstarli
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lyme disease, neurosarcoidosis,neuropathy, bladder and bowel incontinence, constant uti, toenails curling up and peeling back, skin dry and flakey, hole in retina in right eye and no telling what else.
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Sallie Q
Board Staff
| Joined: | Sat Aug 9th, 2008 |
| Location: | NSW, Australia |
| Posts: | 1109 |
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Posted: Sun Feb 19th, 2012 23:36 |
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sstarli
watch out for too much time at a stretch on-line, and watch posture at the computer,
either could contribute to headache.
Quite often on MP headache will turn out to be IP, you will find out sooner or later once you start the Benicar. All part of healing the neuro issues.
A bit of butter on your vegetables will help keep your weight from dropping. You will not get a significant amount of D from it, you are hardly likely to pick up a slab and munch on it
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index to MPKB | MP Sep'08 depression'65, breast cancer'90, Sjogrens| sx CFS, low adrenal,ADD,migraine,BCC; mild stroke, RA| MP conferences
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Cynthia Schnitz
Board Staff
| Joined: | Tue Jul 29th, 2008 |
| Location: | USA |
| Posts: | 3362 |
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Posted: Mon Feb 20th, 2012 02:39 |
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You may not want to get too far advanced in dropping your old foods or meds. Some will be easier to do when you start the olmesartan. Dropping all the D can be a boost to the immune system to soon. So, you may want to go slow on the changes for now.
But take the time now to at least have your shopping person go by a health food store to look for the milk without vit D. Straus Family Creamery is one to look at and Organic Valley provided vit D is not listed on the carton.
Cynthia
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MP start 10/08 (no breaks) | Spondylitis 97, early Diverticulosis 98, early AMD 08, Calcium anomaly 95, TypeII Diabetes(?) 02 | 25D=10.1ng/ml 12/12, (preMP 125D/25D=47/43) | My progress
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sstarli
Member
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Posted: Tue Feb 21st, 2012 23:33 |
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I could have sworn that I sent you a post yesterday after the doctor visit But i was just checking my site and it wasn't there
This is what happened at the Dr visit She is terrified that I will get very sick and maybe die and she doesn't want to be responsible I told her I will sign whatever she wants and When I go back in two weeks she will give me the prescriptions. I asked her if I could just go ahead and get the pescriptions because they would have to be filled in Canada She said no, I could get them at Wal Mart.
The rash I told you about developed huge bliistes but they burst before I could get to the Dr for her to see it. She said it was vascula something and she wanted me to have a stint but in my heart that required surgery and I declined My feet and legs are cold to the touch.
I am a mess, do you really think I have a shot at getting over this at my age? I need to get started, dangit, it was so dissappointed but hopefully I'll last another two weeks. Once I get on the program I will feel better I have always said the body heals itself and I seldom went to doctors I never took antibiotics, pain medication except for dental work and toothaches.
When my back started going out at 42 I stated smoking pot for the horrible muscle spazms and flexaril to cover the symptoms while I laid on the floor and smoked pot. NOw it's medical cannibas . It is wondeful for nerve pain
My doctor said "Shirley, what are you going to do if the Marshall Protocol doesn't work. I said if I do what they tell me to do it will make me well It's happened to too many people for me to think it won't work for me And beside that what I'm doing now is killing me and I can't not do anything if there is something I can do and I can do the MP.
My toe nails are curling up and two of them came off, is this "normal" I know for sure it's not "normal" but it probably is probably connected to TH1 The doc said the vascular thing was also an autoimmune condition
Thanks once again for all that you are doing for us that had no hope. We will get better and better and better
sstarli
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lyme disease, neurosarcoidosis,neuropathy, bladder and bowel incontinence, constant uti, toenails curling up and peeling back, skin dry and flakey, hole in retina in right eye and no telling what else.
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