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cederstrand
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Posted: Mon Dec 21st, 2009 17:49 |
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Was diagnosed with sarc a few years ago. Old Doc talked me out of pred. Now, new Doc & pulmonologist (covered by new insurance) say sarc is stage 2 or 3 and their answer is pred. My wife (an RN) believes the MP is my only choice. I do feel very ill with heavy lungs and am going down hill fast. Going to see old Doc asap and ask if he will do the MP.
I have a swollen lymph node in neck, under jaw line. Also have something odd going on in left pectoral (has been there for years). Question: Can I still have an MRI w/contrast done once on the MP? I feel starting the MP may be more urgent than waiting to get an MRI which can take weeks or longer to have scheduled.
We have a horse farm and even in my current state, I still manage to care of 2 senior mares (one virtually blind) and 1 true dwarf miniature horse. We have many more horses, but these 3 require twice daily care. I will need to control the IP / herx enough in order to continue this care for them. I can bundle up and wear Noirs and do these chores pre-dawn and at dusk. Question: Is this feasible?
Question: Any guidelines regarding tooth paste & deodorant?
Last question: Any "stage 3 sarc" MP people here?
I have read numerous pages in recent weeks. Must admit I am a bit scared at the prospect of out of control IP or herxing. Wish I had tried this 3 years ago when I was still feeling human. Thank you for any suggestions! Rob
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Advanced sarc, severe sleep apnea, NoIRs, covered up, several low lux rooms, caveman diet/with some things cooked, started Benicar 1/21/2010.
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Joyful
Foundation Staff
| Joined: | Fri Oct 19th, 2007 |
| Location: | USA |
| Posts: | 879 |
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Posted: Mon Dec 21st, 2009 19:19 |
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Welcome to the MP forums, Rob. 
You are in the right place... it looks like you have already started reading... good!
An MRI with contrast is ok to have while on the MP, but hurrying to get on the treatment isn't really necessary. Most of us are on the MP for years. A couple weeks, or even a month isn't going to change much.
However, an MRI that scares your doctor can be counterproductive, so you will want to think about that.
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MP Stories | Bacteriality | MP Search | MP Knowledge Base
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cederstrand
Member
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Posted: Mon Dec 21st, 2009 20:35 |
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Forgot to mention one other important point, I do have a heart arrhythmia, which concerns my wife. I recall reading somewhere in here about the danger of MP when the heart may already be affected. Suggestions?
One other question: If I do the probe, what happens to my body when at the end of the probe I am suddenly out of the protective meds?
Thanks again, Rob
Last edited on Mon Dec 21st, 2009 20:37 by cederstrand
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Advanced sarc, severe sleep apnea, NoIRs, covered up, several low lux rooms, caveman diet/with some things cooked, started Benicar 1/21/2010.
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Joyful
Foundation Staff
| Joined: | Fri Oct 19th, 2007 |
| Location: | USA |
| Posts: | 879 |
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Posted: Mon Dec 21st, 2009 20:53 |
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We have members with cardiac symptoms that have done well on the MP.
Our site spends much time trying to get across the point that managing IP/herx is very, very important so we can assist patients and their doctors in avoiding situations where the IP/herx is too strong.
The MP knowledge base has some very important articles on this subject here:Immunopathology
Science behind immunopathology
Managing immunopathology (IP)
The first article states up front that:
Note that three forms of immunopathology are particularly life-threatening and should be handled with an abundance of caution: cardiac immunopathology, neurological immunopathology, and respiratory immunopathology.
Here are the links for those topics:cardiac immunopathology
neurological immunopathology
respiratory immunopathology
There are members of the MP study site that have had hard evidence of reversal of heart disease. So it is possible and has already been achieved.
The main thing is to proceed very conservatively in the treatment.
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MP Stories | Bacteriality | MP Search | MP Knowledge Base
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Marysue
Moderator
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Posted: Tue Dec 22nd, 2009 06:33 |
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Rob,
Here are some thoughts about whether it's feasible to continue caring for your two horses that require "twice-daily care."
First, if you make the necessary adjustments, including NoIR protection and cover up well if you have to work during any daylight, yes, it is feasible. However, there may be times when it is more tiring than you expect and it is real helpful to reduce the work to the minimum necessary while still providing necessary care.
We reduced stall time and altered the feeding routine to reduce my work. During the first 3-5 months on the MP, I had days where twice daily care would have been a challenge. Of our 3 horses, only one has needed frequent care like that.
When I started the MP (on Benicar only), my light sensitivity was tolerable, but strong enough to require 2 pairs of NoIRs and complete covering with thicker, dark clothing and wide brim hat. I quickly realized that working in any daylight was just not practical--especially with the Florida heat/sun. So, I did all my horse care after dark and before dawn and still do. In order to manage any "twice daily" care, I did all my prep work ahead of time which for me was in the evening. I would set up a bucket with everything I needed for the chores at pre-dawn (like bandages, wraps, soaking boot, etc.) and keep it on the back porch with a halter & lead rope all ready. I also set up two sets of tubs/buckets for both the morning and evening feedings. This way I could do most of the work for an entire day all during my best (most functional) hours. Then when it's time for the second feeding or bandage change, the job is quick and I can get back inside and rest.
With your cardiac symptoms, you might consider doing Benicar only until your D-levels drop into the recommended <10-15 range and you no longer have strong IPs before ever adding in the antibiotics. This is a personal choice and one that I only happened onto because it took me awhile to get through the hormonal adjustment from starting on Benicar. By that time, I started having cardiac IPs and later found out my D-levels had dropped to 10 already (down from 30 pre-MP). If I had already started the abx, I probably would have had intolerable IPs. Although I am retired and do have time to rest as needed, being able to care for our horses is a high priority for me and progressing on the MP with tolerable IPs is the only way I can be sure that I am able to keep up the work.
MarysueLast edited on Wed Dec 23rd, 2009 06:28 by Marysue
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Thanks Dr. Marshall and staff for all the support!
CFS/FM '95; infert/endomet '02; hypotension; cardiac IP; start light restrict. Oct08; 125D=70 25D=30 (Feb09); Benicar26Apr09; NoIRs, low light, no sun; 25D=10 (Jun09); 25D=5 (Nov09)
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Deedee
Member
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Posted: Wed Dec 23rd, 2009 00:16 |
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Hey there! I have some thoughts to share with you. First of all i---the staging system. You say you are Stage III. The scadding scale is antiquated and not much value. It is based on a CXR appearance and says nothing about other organ involvement, or even the degree of functioning of your lungs or other organs.
For example, my husband is Stage II by CXR. That means his lymph nodes look big and he has lung changes. If he had lung changes without the big nodes but no fibrosis seen, that would be Stage III. According to his pulmonologist, his lungs on CXR looks like he is a candidate for a lung transplant, but his pulmonary function tests are still pretty good. He gets short of breath with exercise, but does just about anything he wants. His pulmonologist has NEVER recommended prednisone. What he monitors primarily is the DLCO2, which measures gas exchange and so far, his DLCO2 is above 80% (that can fluctuate).
Another example: You can be in liver failure for sarcoidosis but have a normal chest Xray. So much for the scadding scale.
Early in this process Deb G showed me a site that compared a Cat Scan to a Pet Scan and things showed up on the Pet Scan that did not show up on the Cat Scan. A MRI might give yet another "picture". Some changes are microscopic or too small to show up on anything. Sarcoidosis is a systemic disease. You can test yourself until the cows come home, but what difference does it make? Will it change what you do or don't do? Deb helped me see that I should just assume it could be anywhere, not keep worrying where it could be or not be, and get on with the treatment.
In regard to your horses.....I have three small donkeys I adore. Getting donkey hugs helped, so I fed them myself whenever I could. Be sure to ask for help, especially in the beginning. After my mediastinoscopy, I had a big inflammatory reaction and 2 weeks later started the MP. The IP was pretty intense at times, as was the light sensitivity, for the first 6-9 months. I hired someone to muck for me, because sometimes it was just too much. I also visited the donkeys very early in the a.m. and in the evening and wore the NOIRS, hat, special sun screen and covered myself. My husband would also help fed them and/or muck when I was just too whipped. I also hired someone to put hay in the barn. You need to ask for help. My husband also started the MP the same time I did, but although he is supposedly in a higher stage than I am, I have had a whole lot more IP. He is moving through the MP Phases at an amazing pace to me, and is in Phase III now and I can't manage to get into Phase II without having to back down to Phase I. So again, you can't tell everything by a scadding scale or CXR. (By scadding scale I am "stage I").
Keeping a chart in the beginning is very helpful. Sometimes the brain fog can be intense. For example, I couldn't remember if I took a pill or not. Charting helped me see trends in IP. You will learn how to manage IP, how to titrate your antibiotics, benicar, and use aids like light reduction, guaifenisen and quercetin, and for me--naps and mindfulness. Someone is always here to help you and it is really important to have your doctor on board. I would not recommend starting the MP without a doctor that can continue to provide you advice and prescriptions.
I don't know what is going on in your left pectoral, but here is an interesting tidbit....i have had fibrocystic breasts for 30 years and after a year on MP I have no more lumps. Interesting, huh?
If you are going to do the MRI, think about getting everything "ready" to start the MP now. Read all you can on Vitamin D and make the necessary adjustments to your diet. Get the NOIR ordered. Find your doctor that will support you and manage you during the MP. That will all probably take several weeks.
Best to you.
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Sarcoidosis lymphopathy (July 08) | 125D53 25D54 Jul08 | Ph1Aug08 Ph2Nov08 Ph1Mar09 ModPh2Aug09 Ph1Sep09 ModPh2Oct09 Ph1Dec0| ModPh2July10| 25D24 (Nov08) 25D25 (Feb09) 25D15 (May09) 25D14 (Dec09) 25D11 (Mar10)
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cederstrand
Member
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Posted: Wed Dec 23rd, 2009 05:06 |
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Thank for the suggestions. And by the way, we have a total of 9 Paints, 7 mini horses, 2 mini donkeys, a herd of pygmy goats, 4 dogs, some barn cats, 1 indoor kitty, and an assortment of outside birds. That said, only the 2 old mares & the 1 dwarf require regular care. The rest are pasture ornaments.
Saw my old Doc today. Not sure what he thought of the MP at a glance, but we had the paperwork to hand him and knowing he is not a fan of prednisone, he was onboard for a 2-month probe. One drawback is he does travel and is frequently out of town. But he was our very best shot at a viable Doc for this.
He also prescribed a Bipap, which I already have from the pulmonologist, but with the excessively high settings the sleep lab set, it would be dangerous to use. I will having them come pick it up. With the money we've spent on sleep studies and the pul. visit, I could have already paid for one. Sorry to rant.
I fixed my diet over the past 2 - 3 months. Although I have never been overweight, somehow around 18 lbs have come off. This may has done nothing to improve exhaustion, but can only be doing some degree of good on the inside. Was once a serious endurance athlete. Now I'm just a 47 year old sick guy. Oh, and I've been practicing wearing the Noirs. (have both the 2% & 10%) I get sores popping up on the bridge of the nose every 4-5 days, so how to wear them daily (which I know is mandatory) has me scratching my head for answers???
I will not begin anything until sometime in Jan at the earliest. Much to do and consider. This still has me a bit spooked I guess. Thanks again for the suggestions. Much appreciated! Rob
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Advanced sarc, severe sleep apnea, NoIRs, covered up, several low lux rooms, caveman diet/with some things cooked, started Benicar 1/21/2010.
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Deedee
Member
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Posted: Wed Dec 23rd, 2009 12:54 |
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Do you wear prescription glasses? If so, you can buy glasses that have a prescription that fits INSIDE the glasses. It has a padded nose piece and is slightly less dorky. They are much more comfortable
It is on the sunglass link:
http://www.marshallprotocol.com/forum2/4.html
It is called the wind glasses: http://opticsdirect.com/marshallprotocol.aspx
You order the Noir lenses from NOIR and your optician replaces the sunglass lense with the NOIR lense. All you have to do is call both places and they will know what you want and walk you through it.
You can also buy stick-on pads from the drugstore and put those on your current glasses. They aren't pretty but your horses, donkeys and goats don't care. Probably your wife doesn't care either.
It will be interesting to see if the weight loss reduces your sleep apnea. My husband had severe sleep apnea and after he had his (formerly broken) nose repaired, it resolved. Sometimes even small amounts of weight loss can help with sleep apnea.
Great news that your doctor is on-board. I found it easier to just ask my doctors if they thought it could HURT me to try the Benicar and antibiotics and they all thought it would not, than to get them to AGREE it was valid. All except my integrated doc, who was totally on-board from the beginning. In other words, rather than seek an endorsement, I asked their tolerance and the pulmonologist, OB/GYN and family practice doctor agreed to that. My Integrated Medicine Dr. manages my MP and he is the one that really matters. If you find yourself in a bind with the doctor piece, I don't think driving to Asheville would be too much so you could PM to me and I can give you his name and number.
Keep the pace of your ramping slow and cautious to avoid extreme IP and this will help keep your doctor calm, too. You might want to go a little slower than you think you have to. I found that I thought my IP was tolerable, when in fact it was not and I had to get slapped upside the head before it got my attention.
Last edited on Wed Dec 23rd, 2009 12:59 by Deedee
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Sarcoidosis lymphopathy (July 08) | 125D53 25D54 Jul08 | Ph1Aug08 Ph2Nov08 Ph1Mar09 ModPh2Aug09 Ph1Sep09 ModPh2Oct09 Ph1Dec0| ModPh2July10| 25D24 (Nov08) 25D25 (Feb09) 25D15 (May09) 25D14 (Dec09) 25D11 (Mar10)
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cederstrand
Member
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Posted: Wed Dec 23rd, 2009 16:33 |
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***Joyful, thank you for the info & Links. I have read those pages.
***Deedee, how does one go slower than the suggested starting doses? As I understand it, it is that level that protects the organs best. I'm all for going very slowly throughout the entire process, if it is safe to do so.
That is excellent you have all your Docs onboard. And I appreciate your suggestion on approaching them. I do not think my pulmonologist would ever have any interest in participating in any way. When my wife (with 30 years as an RN in CCU, ICU, ER, etc....) and I tried bringing up the MP, she rolled her eyes and scoffed under her breath, going into a mini lecture at us. It wasn't her poor bedside manner that bothered me, it was her complete and immediate dissmissal of something she hadn't even heard of before or knew anything about. Honestly, I have written her off. (Rant over)
It would be helpful to have my new Doc onboard, but that may not be easy. She has not been an MD as long and is, as they say, "book smart, real world ____"(chose your own word here). We'll try your approach with her. Worst she can say is no. And my old Doc was smart enough to know how to write the prescriptions in a way Insurance would not balk at them. We really love our old, experienced, open minded Doc.
And BTW, our 2 mini donkeys are (if I had to chose), my favorite little characters on the whole farm. Art, our little jack backs up to people tail first. Folks who don't know him worry he is fixing to kick. He is very docile, never kicks, and only does this hoping for rubs. Adorable little guy.
***Marysue, thanks for sharing your experience with horse care while on the MP. When you say you needed 2 pairs of Noirs, did you mean the #2 & the #10, or did you mean actually wearing 2 pairs at the same time? I have made practice runs bundled up & wearing Noirs. After only a few days, trying to take them off made the real world light seem incredibly bright. After a while watching TV at night with the 10%, even the screen seemed bright at times. No doubt my eyes will be very light sensitive on the MP. As an artist, the color changes from the glasses obviously will prohibit me from working. But as tired as I am these days, I hardly get anything done at the easel anymore anyway.  I just wonder if the time would ever come when I would not require Noirs and could work in the light again?
Thanks for listening. Rob (back into the light while the sores on my nose heal...ugh!)
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Advanced sarc, severe sleep apnea, NoIRs, covered up, several low lux rooms, caveman diet/with some things cooked, started Benicar 1/21/2010.
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Marysue
Moderator
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Posted: Wed Dec 23rd, 2009 18:41 |
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Rob,
The combination I ended up with for my brief trips outside is 2%NoIR (#35) with a dark fitover (the kind you get from the eye doctor when they dilate your eyes). Then I added a piece of window darkening film to the inside of the fitover to make it even darker. Then of course, the wide brim hat helps reduce it even more. This combination brings the normal sunlight level down to something much more like my darkened house with low light.
When I go in the tack/feed room in the barn, I can take off the fitovers and my 2%s are just enough to still see but protect from the regular light bulbs that we have in there. We changed out the barn lights from 100W to 75W so that I can get by with my 10%s there (at night).
I'm wondering--which NoIR frames did you get? I know some of them can rub depending on the fit. I'm using the #35 style that are kind of a wrap around and the nose piece area is smooth.
Experimenting with the glasses as you are does help reveal the light sensitivity. Most of us aren't really aware just how much the light is causing symptoms until we really start protecting our eyes and then see the difference.
As for the Benicar, when I started it I already had a lot of light sensitivity and I thought it would get much worse. But, the change was more subtle. It was a noticeable increase but still tolerable and it was enough to get me to where my glasses at the level needed all the time.
Speaking of Benicar, don't get confused about ramping abx (which is what Deedee was referring to) with how you take the Benicar. Benicar is 40mg every 6' consistently and is not meant to be "ramped." It can be increased as needed to every 4' with 20mg sublingual. It's the Benicar that is what gives the organ protection and activates the immune system.
Marysue
P.S. Your mini-donkey sounds adorable! My paint horse does that too, but unfortunately I had to break him of the habit since it's a tad less endearing when a 1100lb horse trys it with everyone! 
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Thanks Dr. Marshall and staff for all the support!
CFS/FM '95; infert/endomet '02; hypotension; cardiac IP; start light restrict. Oct08; 125D=70 25D=30 (Feb09); Benicar26Apr09; NoIRs, low light, no sun; 25D=10 (Jun09); 25D=5 (Nov09)
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Deedee
Member
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Posted: Thu Dec 24th, 2009 01:07 |
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Yes, Marysue is right about what I was trying to say. No ramping on the Benicar--that is protective for you and helps normalize your Vitamin D and kick-start and maintain your immune system. I was referring to antibiotic ramping.
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Sarcoidosis lymphopathy (July 08) | 125D53 25D54 Jul08 | Ph1Aug08 Ph2Nov08 Ph1Mar09 ModPh2Aug09 Ph1Sep09 ModPh2Oct09 Ph1Dec0| ModPh2July10| 25D24 (Nov08) 25D25 (Feb09) 25D15 (May09) 25D14 (Dec09) 25D11 (Mar10)
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cederstrand
Member
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Posted: Sun Dec 27th, 2009 00:12 |
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The Noirs I have are 701, 707, and the 401-36. The latter does not seem to offer enough light protection and was a little uncomfortable. This last sore on my nose is still not quite gone yet. Just don't know how I will be able to wear Noirs every day, let alone a cpap mask at night, when these sores pop up so easily? ugh!
I'm still second guessing if I really want to do the MP. How realistic is it that in a few years I could live without sunglasses (at least indoors) and resume my art career? This is a tough one to swallow for me.
How effective can Benicar alone be, without pursuing the antibiotics?
Can someone tell me exactly why when following the MP it is suggested not taking l-Arginine & l-Citruline? My oldest brother had a heart attack some years back which led to stents. He has been taking that combo of amino acids ever since and although he cannot prove it is working, he has not had any further heart trouble since. I have been taking them for the past few months.
Hope eveyrone has been enjoying the holidays. All for the moment. Rob
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Advanced sarc, severe sleep apnea, NoIRs, covered up, several low lux rooms, caveman diet/with some things cooked, started Benicar 1/21/2010.
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Marysue
Moderator
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Posted: Sun Dec 27th, 2009 08:05 |
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Rob,
I can appreciate your "second-guessing" the MP. Many of us have been there and for each of us it's a personal choice. After reading many of the interviews of those who had completed 2-3 years on the MP, it became clear to me that they were generally experiencing a greater recovery rate than I could ever hope to have attempting anything else (including supplements, or alternatives). There are also many of them who no longer need to wear NoIRs--so yes, there is a real possibility that you too, will eventually recover to a point where you will be able to return to your art.
Even now, I occasionally work on projects that require color distinction and I switch to my Bolle 100s or I get by with wearing no glasses and turn the lights down low on my "true color" natural light lamp. This may not be enough for you to seriously pursue your art for now, but it is possible to make some alterations and still do some work.
Yes, it is possible to progress on the MP without antibiotics. Benicar is the real key to activating the immune system and restoring the VDR. I have been on Benicar only for 8 months now and have many, many improvements along with a steady, consistent flow of noticeable IP symptoms that tells me that my immune system is being activated by the Benicar. Once you start the MP, if you choose to do so, you will be able to experience the changes for yourself and learn to distinguish between various symptoms to tell if you are progressing.
As you already know, the MP is a serious commitment. And it sounds like you have been doing plenty of reading. The real decision comes down to understanding the science behind the MP and realizing that you are choosing between options that suppress the immune system and allow the bacteria to continue to take over your body, life, and health--or, restoring the immune system, and accepting that the temporary experience of increased IP symptoms will eventually give way to the restoration of your health.
As for the supplements, I'm glad your brother has had no further trouble (so far). However, here is a quote from wikipedia's page on L-Arginine.
Possible increased risk of death after supplementation following heart attack
A clinical trial found that patients taking an L-arginine supplement following a heart attack didn't improve in their vascular tone or their hearts' ability to pump. In fact, more patients who were taking L-arginine died than those taking a placebo and the study was stopped early with the recommendation the supplement not be used by heart attack patients.[14][15][16] The supplement is still widely marketed.
Here is a link that may help answer your question about the supplements:
Rationale for avoiding non-MP treatments
Marysue
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Thanks Dr. Marshall and staff for all the support!
CFS/FM '95; infert/endomet '02; hypotension; cardiac IP; start light restrict. Oct08; 125D=70 25D=30 (Feb09); Benicar26Apr09; NoIRs, low light, no sun; 25D=10 (Jun09); 25D=5 (Nov09)
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Deedee
Member
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Posted: Sun Dec 27th, 2009 14:26 |
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Read: http://www.marshallprotocol.com/forum32/7328.html which says, in part,
"Now that the MP is becoming better known, we need to encourage anyone who thinks it might help them, to try it regardless of their intentions relative to sun exposure.....Some will be delightfully surprised that they are not photosensitive and others will be disappointed to find that they are more photosensitive than they'd like. It's a very individual thing. But we know now that it's important for folks to have that trial with the MP and find out for themselves. The effects of the sun will be self-limiting and may even force some difficult choices due to a new awareness."
It seems to be a very individualized experience. Some, I have read, have had to avoid light and sun exposure for years. Others, like my husband, seem to have no sun/light sensitivity at all. I was very sensitive for about 6 months. Now, I use my NOIRS only in bright outside light or if I am having intolerable IP and I no longer live in a house with darkened rooms (except my bedroom, as a retreat.)
It seems that our Vitamin D levels have little to do with our sun or light exposure and everything to do with our diet. Perhaps we could get our D levels lower if we avoided more sun, but both of us are at a D25 of 14. My husband does nothing to shield himself unless we are in a situation that would constitute "sunbathing" if he were without protection, whereas I always use the sunscreen, protective clothing and a hat. I am, however, very fair and have always been sensitive to the sun.
I own a business and I have 6 employees. I work about 5 hours a day in the office. I take off if I feel tired. I do more work from my home. Being on the MP has not kept me from working, but has reduced my work hours and changed how I work. My priority is my health.
Something that was confusing for me when I first started the MP was that Sun/light flare is not IP/herx. The sun or light problems are more of a reflection of the light/sun causing hormonal swings and are really a kind of side effect of the light/sun exposure. It is not good. IP or herx is the result of bacterial killing. IP that is under control is good.
In regard to the stent. My huband had 2 stents 6 months apart about 10 years ago and he has also not had a return of cardiac problems either. He is not on the medication that your relative is on. We "think" the problem may have been caused secondary to a tooth abscess, which created high inflammation in his body. Then again, he also has sarcoidosis. The fact is, we don't KNOW what caused the arteries to clog, we can only guess. Likewise, your relative does not know what may or may not be causing his CAD or fortune in not having a re-occurence. Certainly, the article provided to you by MaySue would give me pause. More and more science is realizing that heart and CAD disease is caused from chronic inflammation, which is what Th1 disease is. My thinking is that it is better to treat the cause, than to treat the symptoms.
Embarking on the MP is not for sissys and it is good that you are considering these questions and seeking answers that will help you make an informed decision.
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Sarcoidosis lymphopathy (July 08) | 125D53 25D54 Jul08 | Ph1Aug08 Ph2Nov08 Ph1Mar09 ModPh2Aug09 Ph1Sep09 ModPh2Oct09 Ph1Dec0| ModPh2July10| 25D24 (Nov08) 25D25 (Feb09) 25D15 (May09) 25D14 (Dec09) 25D11 (Mar10)
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Leroybrown
Member
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Posted: Sun Dec 27th, 2009 15:39 |
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Hi there,
I've been on the MP for 3 months - benicar only. I started with benicar every 8 hours and started getting IP as well as an improvement in chronic pain almost right away. I was slightly light-sensitive but did not need to wear NoIRs indoors, not even at work.
A month ago I changed the dose to benicar every 6 hours and felt even better pain-wise, and I'm getting steadier IP.
I'm still not that light-sensitive, although being in the car on a 2 hr drive during the day gave me some symptoms for a day or 2.
Good luck with your decision!
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Autoimmune Pure Red Cell Aplasia, Jan 2009 * hgb: 82, wbc 1.5
Phase 1: Sept 25/09
25D=25 1,25D=58 Aug 18/09
benicar 40mg q6hrs
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cederstrand
Member
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Posted: Sat Jan 9th, 2010 01:34 |
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Thought I would drop in to post an upate. First, my dietary changes (basic MP guidelines) have been complete with interesting results. Most notably my blood pressure now averaging around 112/62. The thing that worries my wife (the RN) is my heart rate has been periodically dropping into the 40's. She thinks I should first see a cardiologist before starting the MP, as she believes I could have a sarc thing going on in the heart.
I have the first 90 Benicar in the cabinet, waiting for the day. I will get the refill when the time allows, so I will be way ahead of the game with no fear of running short when I am on the MP, especially when my Doc is often out of town. (sneaky, huh)
So anyway, that is where things stand, at idle except for the excellent diet, which I am rather proud of. Except for the past couple days of extreme exhaustion, for a good 2 weeks or so I have noticed a steady improvement in mood. Find myself smiling more. Hope that feeling returns asap.
I used Teeccino herbal coffees as suggested by someone elsewhere on this site, to wean myself from real coffee. Worked great. Question: is there any reason I cannot continue to drink the Teeccino coffees during the MP process? I rather miss having something hot to drink after a meal.
Thanks! Rob
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Advanced sarc, severe sleep apnea, NoIRs, covered up, several low lux rooms, caveman diet/with some things cooked, started Benicar 1/21/2010.
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Deedee
Member
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Posted: Sat Jan 9th, 2010 02:51 |
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Rob, we ran the Benicar past our cardiologist before we started the MP and he had no problems at all with the 40 mg 4X per day. My husband had 4 stents 10 years ago and I have several risk factors.
Recently, he had some jaw pain following exercise and went to the ER. It was decided it was prudent to do a cath because his diagnosis was severe and aggressive CAD 10 years ago. We were pleased that his vessels showed no occlusion and mild plaque, except in one non-critical artery that did have some occlusion but required no stent. We have both been on the MP since August 2008.
Even with obscene lipids my heart Cat Scan showed zero plaque.
There are some interesting research articles out that discuss the cardiac and arterial remodeling powers of Benicar. Here is one: http://www.medicalnewstoday.com/articles/111474.php It will be interesting to hear your cardiologist's opinion on the Benicar.
By the way, during the entire hospitalization no one questioned the need for continuous Benicar before, during and after the procedure.
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Sarcoidosis lymphopathy (July 08) | 125D53 25D54 Jul08 | Ph1Aug08 Ph2Nov08 Ph1Mar09 ModPh2Aug09 Ph1Sep09 ModPh2Oct09 Ph1Dec0| ModPh2July10| 25D24 (Nov08) 25D25 (Feb09) 25D15 (May09) 25D14 (Dec09) 25D11 (Mar10)
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cederstrand
Member
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Posted: Sat Jan 9th, 2010 03:48 |
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Deedee, thanks for the link. It is also encouraging to hear your husbands story. Perhaps there is hope for me yet, even if the sarc has damaged my heart!?! I just don't want to end up in the "too late for MP to work" catagory. I also don't want some sudden heart incident while starting the MP.
When I saw my old Doc, (the one on board), I forgot to ask for the two D metabolite tests. He uses Quest Labs. I will be asking my new Doc and hopefully she can order the test from that Quest as well. I believe she normally uses LabCorp. I am sure she will be wanting a regular full type blood workup, which I would want through LabCorp so our insurance pays for the tests. Does anyone know how much the D metabolite tests run with Quest, a ball park figure? That is going to be out of pocket for me.
We're iced in here in north Georgia. Sure increases my workload. Even with more sun to avoid, I am looking at spring into summer for the MP, depending on if this new diet can control the sarc until then. Thanks for listening. Rob
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Advanced sarc, severe sleep apnea, NoIRs, covered up, several low lux rooms, caveman diet/with some things cooked, started Benicar 1/21/2010.
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Deedee
Member
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Posted: Sat Jan 9th, 2010 13:32 |
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Rob you don't need the D1,25. You know you have sarc. Sometimes people get both tests to confirm they have a TH1 disease. You are past that.
Going through the MP we monitor the D25 with a goal to get the D down to therapeutic levels. That generally takes a long time. It took me over a year to get from high 50's to 14 D25, and that was with careful avoidance of ANY known D in my diet and shielding myself from the sun when I go outside.
As I recall, the D25 test doesn't require special handling. In any case, you can ask your doctor to send you to a local lab to get your rest results drawn. The D25 test is not very expensive, but I think the D1,25 test was $300. Also the D1,25 will fluctuate a whole lot. $300 will buy a lot of hay, so I would say who cares what your D1,25 is? You are getting ready to knock that sucker down with your diet and Benicar. javascript:emoticon('',%20'images/emoticons/smile.gif')
Bbbrrrr.....it is FREEZING up here in the mountains. The other morning it was 8 degrees when I was going to work. Last night it was below zero! My donkeys are sucking down the warm water several times a day and I even gave them some oats to help generate some heat. Stay warm!
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Sarcoidosis lymphopathy (July 08) | 125D53 25D54 Jul08 | Ph1Aug08 Ph2Nov08 Ph1Mar09 ModPh2Aug09 Ph1Sep09 ModPh2Oct09 Ph1Dec0| ModPh2July10| 25D24 (Nov08) 25D25 (Feb09) 25D15 (May09) 25D14 (Dec09) 25D11 (Mar10)
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cederstrand
Member
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Posted: Sat Jan 16th, 2010 04:57 |
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I saw my new Doc today and ran the MP by her. To my surprise, she didn't dismiss it in the least and said new discoveries of today sometimes become the standard in years to come. She was well informed about the qualities of Benicar and was finishing my sentances. She requested more info which I will print out and send to her. She would also need to consult with other Docs who had successfully applied it before considering doing so herself. (((I knew she would be a tough sell for anything beyond agreeing to look into it))) She will discuss this with some other specialists she works with (like probably a pulmonologist...uh oh) to see if any of them are familiar with it and for their thoughts. Glad my old Doc already agreed to giving this a try.
She also felt that with my low BP & especially with my heart issues, I should see a cardiologist first. My wife agreed, as did I, so first thing next week I'll make the appointment. It might prove helpful to have a cardiologist on board who could be contacted should something happen in this regard.
Had blood drawn for the baseline tests: CBC, CMP, 25D, thyroid function, and liver panel. As suggested, I left out the 1,25D test, considering both the expense and the Lab she uses.
My wife expects to be tested for Hashimoto's thyroiditis. Now, providing that test comes back positive, she also wants to persue the MP. She works weekends at the hospital. Not sure if #701 Noirs would be to dark for her to do all the stuff she needs to or not? Then there is the long drive to and from work? She wants to get off the prescription drugs she is on (except the thyroid hormone) and use Benicar for her high BP. She will be seeing an andocronologist soon. She continues to make dietary improvements, too.
***Deedee, during that cold spell I brought our two mini donks into the barnyard. Our Jenny is an old lady now and seemed to be getting chilled and unwilling to join the mini horses under the extra long shelter. Temps are warmer now so she is back with the gang. Tonight I didn't have to beak any ice...whew!
Cheers! Rob
Last edited on Sat Jan 16th, 2010 05:33 by cederstrand
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Advanced sarc, severe sleep apnea, NoIRs, covered up, several low lux rooms, caveman diet/with some things cooked, started Benicar 1/21/2010.
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