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cederstrand
Member
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Posted: Fri Feb 19th, 2010 21:48 |
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| Already sent him (and another closer Dr) e-mail inquiries, so we'll see what response I receive back. Fingers crossed...running out of options and don't want to go back, as that would spell a health disaster. 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: Fri Feb 19th, 2010 22:32 |
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I think an advanced letter is a great idea.
My husband and I have been seeing this doctor for at least 15 years.
He is not "in network" for our insurance co either, but often they will reimburse at a lower amount for out of network doctors. You might double check with your insurance co on that.
We just pay him and file for reimbursement and so far, have had no problems.
Look at it this way....$475 to get a chance to get well. What a bargain. I remember when my husband balked at a treatment that was $2000 and I told him it was cheaper than a funeral.
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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: Fri Feb 19th, 2010 22:55 |
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Deedee, how long does he write your prescriptions for? Do you think he would go for 6 month prescriptions? Asheville may be a beautiful place, but we dread making the trip any more often than is absolutely necessary. It takes a lot to get me off the farm at all, (just ask my wife). Rob ps; cremation is cheaper than a funeral, which is my personal preference, and only because you can legally get burried out back.
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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: Fri Feb 19th, 2010 23:57 |
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| Oh yeah, we are into the cremation too, but it is still more expensive that $495. plus you have to feed everyone. (I know, I am sick in many ways...) You would have to speak with Dr. B about that arrangement, but we find him to be very agreeable. He does do phone consultation, but my insurance will not reimburse for phone consultations so we go in. In your case, it might be worth paying out of pocket. Just have your questions prepared and skip the chit-chat!
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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 Feb 24th, 2010 20:14 |
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Found a new Doc here in GA. She has used the MP for two other diagnosis. That's all I have to report on, but it's a BIGGY to me.
Hope everyone is doing well. Cheers!  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: Thu Feb 25th, 2010 00:16 |
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| yeah!
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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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Marysue
Moderator
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Posted: Thu Feb 25th, 2010 03:13 |
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Rob, that is awesome! Hope it works out.
Deedee, thanks for the guifenisen information. We finally picked up some Mucinex (100% Guifenisen) at Walgreen's Pharmmacy tonight.
Marysue
P.S. More wet, cold, nasty weather tonight--horses are in the barn with mounds of hay.
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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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cederstrand
Member
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Posted: Thu Mar 4th, 2010 07:00 |
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Update: Made an appointment with the newest Doc. Couldn't get in before the first week of May. Hope this means she's good. I'll see my regular Doc (who insurance covers) to plead for some interim benicar.
Down to 12.6% body fat. Have managed to stall the weight loss for about 3 days now by eating even more food. Wondering if I might try adding some Organic Valley milk or leave well enough alone? Looks like their "Regular" has no Vit D. I would use it only as a creamer, like in my (now occasional) coffee. Yea, I went back to 1 morning cup of joe, but not every morning. Hmmm, is this a bad thing to do?
Had our 4th snow of the year here. Most years we have none. Sure am ready for summer and planting the garden. Our grocery bill is almost as crazy as the electric bill. Yikes!
Hope everyone is doing well. 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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Knochen
Moderator
| Joined: | Wed Oct 17th, 2007 |
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Posted: Thu Mar 4th, 2010 12:31 |
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Organic Valley milk is fine, but you can get more caloric intake using half&half (the real stuff, not the "low fat" stuff that has all kinds of bad things in it). I have been using half and half for years on the MP, I lately go through nearly a quart a week and my D25 levels routinely come in at 5 or less. If you need the caloric intake, fats are a good way to go for a concentrated source.
Good luck with your new MP doc. A lot of us had to change docs to stay with the protocol, and it's worth every bit of effort you put into it. And even though some days it may not seem like it, it's actually more fun than a cremation.
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I can help you understand the recovery process, but only your physician is licensed to give you medical care.
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Sallie Q
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| Joined: | Sat Aug 9th, 2008 |
| Location: | Hope, Australia |
| Posts: | 334 |
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Posted: Thu Mar 4th, 2010 21:49 |
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Right again, Knochen
Cremation is over too soon, particularly if the food is good, which it must be if you have anything to do with it.
I rather like the idea of legal burial on the farm. Avoid those restless city folk, maybe have a barrow like the ancient kings, with a time capsule.
An archeologist of the future may find that the bones dating from, e.g. 2095 are in a remarkably well preserved state compared with bones of a similar age whose owner did not have the opportunity to do the MP
hope you got your benicar, Rob
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Sjogrens; b.cancer; postviral fatigue| D25was13.2ng/ml@ph1-Sept08 |Nov08mod.ph2 /Feb09ph2/ May09ph3| D25 7ng/ml@Jun10 | http://mp-lifestyles.org/category1/ | for recipes, menus, clothing tips, discussion of various MP issues...
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cederstrand
Member
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Posted: Tue Mar 9th, 2010 04:41 |
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Still stretching out the benicar 40mg every 8 hours until I see the new doc. Not sure why I am not having any notable IP/herx going on? Seems like just the one time and that was it. If anything, more days than not I feel ever so slightly better. My eyes are also less sensative. Only need the noirs outside now.
Healthy eating (like a horse, but with more variety) continues to go well. Unless you count the morning coffee I am back to drinking again as bad!?! Sure is tasty with a little Organic Valley half & half added in.
Not much else to report on here. Hope everyone is doing well. Love y'all's sense of humor.  Rob
Last edited on Tue Mar 9th, 2010 04:55 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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Marysue
Moderator
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Posted: Tue Mar 9th, 2010 06:57 |
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Rob,
Even though you need to stretch your Benicar and have gone to 3/day, you are still getting the benefit of maintaining the Benicar blockade of the VDR and getting/keeping it functioning. As for the IP, you might not get the same level of immune activation at 3/day. I know that when I have backed off to 4/day (I normally take 5/day) my IPs are less.
Thanks for the update...glad to hear you are doing OK. With some of the nicer (?) weather we should be getting now, you might be able to get some chores done with the animals before you increase the Benicar again when you see your doctor. Even though our nights are surprisingly nippy, the horses are all dropping their coats. In a few more days there will be hair everywhere. Time to unbury the shedding blades and curry combs. 
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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cederstrand
Member
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Posted: Sun Mar 21st, 2010 13:55 |
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Update: Well, still doing ok on the 8-hour benicar. Anyone in here having kidney issues? Turns out benicar put my wife in stage 4 kidney/renal failure, so she is done with the MP for good. Sure hope she can fully recover from this. I'll have new Labs done in the next couple months to make sure all is ok with my own.
Hope y'all are doing well these days. Cheers! 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: Sun Mar 21st, 2010 16:07 |
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Your wife is in stage 4 renal failure? Hummmm....are you reading the eGFR and coming to this conclusion? Did you doctor say this? The reason I ask is because when I was on the Zith I had a lab test with a BUN of 49, low eGFR and a creatinine that was a little high. I freaked out after reading on the internet that this meant I was in renal failure!!! My MP doctor was out of town and I called my GP, who was not concerned at all and said I should retest because I was probably dehydrated. My MP doctor then came back and told me that the reason my values were off is because my kidneys were processing dead bacteria---lots of it--and I had nothing to worry about. Further, he said he hates the eGFR, as it is just a calculated value and unnecessarily frightens people. To get a true GFR, you have to do a complicated test that involves collecting urine over a long period of time (24 hours, I think).
He told me to drop the Zith wait 60 days and retest. He said to make sure I was well-hydrated (I drank two glasses of water that morning prior to the test.) Guess what? I did not change my Benicar dose (4X per day) because Benicar is renal protective. All my kidney values were normal when I retested. I was going too fast on ramping up on the antibiotics and Zith can sneak up on you and give you a big punch. My last kidney and liver tests were better than they have ever been as was my calcium levels. You can read my thread to see what transpired over those months.
That is my experience.Last edited on Sun Mar 21st, 2010 16:12 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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Carricol
Member
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Posted: Sun Mar 21st, 2010 16:54 |
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| Have you ran a 24 hour creatnine clearance test. That is the acid test showing kidney function on the MP. My Bun and EGFR have consistently been out of range. I have had the 24 hour clearance test three times which has always been normal.
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Sarcoidosis 1-25D 16, 21 Oct 08; Ph1 Nov07, Synthroid, 5-HTP, tyrosine, digestive enzymes, NOIRs lite exp r/t commute cover up, Ph2 Jan 08, Ph 3, 6 May 09, 25D 6, Apr
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Marysue
Moderator
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Posted: Sun Mar 21st, 2010 20:51 |
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Rob,
I'm sorry your wife is off the MP "for good". However, there are others who have seen extreme fluctuations and drops in these numbers while working through the healing process on the MP. Have you seen this presentation by Prof. Marshall?
http://mpkb.org/doku.php/home:publications:marshall_westchina_2008
You can scroll down in the text to "Renoprotection despite surging metabolites" and/or watch the video. This segment comes early on in the presentation. He talks about the changes in renal lab work while on the MP and the protection that Benicar provides.
I don't know if this is helpful at this point since your wife has gone off the MP, but for anyone who has these types of changes in their labwork, knowing ahead of time how to handle it can be lifesaving. Finding other ways to reduce the pace of bacterial die-off while keeping Benicar in place for organ protection is the safest course of action.
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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Joyful
Foundation Staff
| Joined: | Fri Oct 19th, 2007 |
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Posted: Mon Mar 22nd, 2010 05:39 |
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Rob,
Sorry about the troubles with your Benicar AND with your wife's kidney issues. You sure are staying positive about it all.
This article isn't in final form, but you might find this helpful:
http://mpkb.org/doku.php/home:tests:creatinine
Also:
http://mpkb.org/doku.php/home:protocol:olmesartan:kidney_disease
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MP Stories | Bacteriality | MP Search | MP Knowledge Base
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cederstrand
Member
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Posted: Mon Mar 29th, 2010 18:28 |
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First, thanks for the info. Not sure it did anything to change my wife's mind, as she is head strong when she decides on something. She did have new Labs done and the results regarding kidney function moved from dialysis levels into kidney disease levels, so she will do nothing more and have labs drawn again in another 6 weeks.
Now, for some funny (to me) updates on myself. Couple weeks ago I got out of bed in the middle of the night and upon entering the bathroom did the "chicken dance". What an odd sensation to experience the following tunnel vision (lights still off) and feeling my head connect with the cabinet. Didn't go all the way down, but that was as close as I have come yet. Was actually rather interesting.
Then a few nights ago (same middle of the night scenario) I miss-judged where I was in relation to the bathroom door and walked head long into the door frame. Honestly, I am not nor have I ever been clumsyLOL
And while I'm reporting the funny stuff, today I spaced out and took a benicar at 4 hours instead of the 8 hours schedule I am currently on. OOPS! Have done this twice now since first starting on benicar months ago. No problem, I just had a second cup of coffee to compensate.
On a sad note, our oldest mare "Sandy" is really losing stability (use of) her hind legs these days. She has already done much better than we ever thought she could, all things considered. I don't think she has much more time with us. I truly dread that day. 
Hope everyone is oding well. Cheers! 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: Mon Mar 29th, 2010 20:42 |
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Rob,
Thanks for the update. I remember several wall and doorway collisions during my first few months on Benicar. Sometimes, they happened during the day, too.
Just another reminder to sit up first and wait a few seconds before just jumping up--give your body a chance to adjust. This is very common in the early stages and also for those increasing abx.
Sorry to hear about Sandy...I know you'll treasure every day you have left until the time comes to say goodbye. 
MarysueLast edited on Sun Apr 4th, 2010 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: Tue Mar 30th, 2010 01:38 |
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| There is a disease horse pick up from raccoon droppings that can be treated. It causes hind leg weakness. I had a horse that had it and we gave him medicine and he recovered.
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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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