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Deedee
Member
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Posted: Thu Feb 12th, 2009 12:53 |
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Thank you to all the moderators.
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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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Deedee
Member
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Posted: Tue Feb 24th, 2009 01:33 |
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I am going to Montana on vacation and I do not want to provoke more IP during that week. I am on schedule to ramp up on the mino (phase II) along with 3rd week of Z at the start of the vacatioin week. I am thinking about just staying where I am for 2 weeks. Is that a reasonable plan for someone that does not want to go off the protocol, as in "take a break" but just wants to kind of go in limbo for an extra week?
I am doing great. I am still getting tolerable IP and realizing improvements. Thank you all for your help.
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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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Barney
Moderator
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Posted: Tue Feb 24th, 2009 04:19 |
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Deedee,
I always stayed where I was while traveling, I felt I had tooo much to lose by stopping MP to travel.
You might try to travel more at night, if possible. If you are headed west, try to travel early morning until the sun is getting ready to be in your face, then go to a motel. Headed east, try to travel in the afternoon and evening when the sun is behind you. I hope this gives you an idea of how to help yourself while traveling. Always wear your Noirs, long shirts, long pants, shoes, socks and definitely a hat and if the sun bothers you more than most and you are driving, be sure and wear gloves.
Hope you have a wonderful vacation. Please let us know how you do.
HANG IN THERE, WE WILL MAKE IT!!!BARNEY
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Sarcoidosis diabetes asthma| loss r/kidney| hysterectomy osteoporosis| Start MP 1/1/05| My Story| ABC of MP| Bacteriality|
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Deedee
Member
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Posted: Tue Feb 24th, 2009 16:27 |
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Thanks, Barney. Will do.
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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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Deedee
Member
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Posted: Thu Feb 26th, 2009 00:58 |
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Advice needed! My doctor is out of town and I got back some funky blood work. He will be back in town Monday and I will be in Montana by then. I read all I could on the MP site and got very good info, which has helped keep me from freaking out on the renal function (I am never had abnormal values before.) Thank you for all the info on what the tests mean and how IP can throw them off. Very helpful. Dr. Dodd's post helped much, however my creatinine is OK and only the eGFR and BUN is high--of more concern the eGFR, so I am not sure how to interrupt that as he seems to discuss the problem of high Creatinine AND low eGFR. All signs seem to point to reducing IP. The question I have is how to manage the immunopathy (questions to follow) and even if it is necessary with the following values ....?
Here is the problem:
Urea Nitrogen 46H (7-25 mg/dL)
Creatinine 1.16 (.50-1.2 mg/dL)
eGFR Non-Afri American 48L (> or = 60 mL/min/1.73m2)
Bun/Creatine Ratio 40H (6-22 calc)
sodim 139 (135-146 mmol/L
Potassium 4.7 (3.5-5.3 mmo/L
Chloride 107 (98-110 mmol/L
Carbon Dixoide 20L (21-33mmol/L)
Calcium 10.0 (8.6-10.2)
Protein, total 7.3 (6.2-8.3 g/dL)
Albumin 4.6 (3.6-5.1 g/dL)
...all else normal EXCEPT
My Cardio CRP went from 4.3 to 6.4 H (I get it that this from inflammation/IP.)
Vit D went from 24 to 25. I am going to eliminate the yogurt and see if that is where it is coming from. I had not had white flour, milk, mushrooms, fish or eggs touch my lips in 7 months. I will be more dilligent about sun exposure.
Lipids improved but still bad:
10/29/08 02/19/2009
Triglycerides 376 258
Cholesterol 350 281
HDL 50 61 (one bright star!)
LDL 225 168
I have been taking 200 Quercetin 200, 200 magneisum, 250 calcium once per day and guaifenesin when I feel too much herx. Benicar Q4, occasionally 20 extra if too much IP (not often.)
In Phase 2 at second level of antibiotic and 75 mino, ramping up every 10 days, seemingly with no problems.
Overall, I have felt that the IP is tolerable. I have realized improvements such as less mediastinal lymph node pain, deeper breathing, resolution of wheezing/coughing, improvement in leg/feet pain.
Primary IP is fatigue, neck lymph node swellling, left flank pain, sometimes muscle/nerve pains.
I don't want to over-due the IP and make my kidneys inflammed. However, I don't want to stop the progress either. I have followed the MP to the T with the exception of starting on the Z at 1/2 the starting dose.
Should I slow IP? If so, should I
1. take more quercetin?
2. reduce antibiotics or stop antibiotics for a while?
I was thinking maybe Q3 Quercetin and stop the Phase II antibiotic for a few weeks and stay at my 75 mino, then re-test or is this over-reacting?
Thank you so much!
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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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Deedee
Member
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Posted: Fri Feb 27th, 2009 01:00 |
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Correction! I take Benicar 4X per day not Q4. And was thinking 3X per day for Quercetin, not Q3. Rough night. Sorry.
Last edited on Fri Feb 27th, 2009 01:02 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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Dr Trevor Marshall
Foundation Staff
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Posted: Fri Feb 27th, 2009 03:04 |
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Deedee,
I was speaking with a physician today about a patient of his with very similar blood values to your own, Perhaps it was your physician, I never know (we try to keep the patient's identity confidential).
During my presentation at West China Hospital i covered just this scenario when trying to explain how important it is for medicine to understand immunopathology. You might look at the transcript or the video for more info:
The video of the seminar is at:
http://www.vimeo.com/2599416
and a transcript is available at http://AutoimmunityResearch.org/transcripts/WCH_2008_seminar_transcript.pdf
This is what I told the Doc I spoke with earlier: The BUN rises because NO (nitric oxide) is given off as the bacteria in the microbiota are killed. CRP is a protein that is expressed along with several families of antimicrobial peptides. It is a marker of the immune system fighting Th1 inflammation, which is why it has been used as a marker for cardiovascular disease (which is Th1)
Always try and control immunopathology by reducing the antibiotic dose. A very few members get palliation from frequent mino, but most find that they get least IP on Benicar alone. Quercetin should be used as a last-resort, antibiotic adjustment is the preferable way to control immunopathology.
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Deedee
Member
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Posted: Fri Feb 27th, 2009 13:53 |
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Thank you for your reply. Unfortunately my doctor is out of town until Monday and Monday I will be out of town, which is why I turned to the site for help with what I felt was urgently needed advice. I appreciate your help.
I have had several days to think about the high BUN, low eGFR and how it relates to my IP, and I am wondering if somehow I have been discounting the daily fatigue as IP because I have been so thrilled to see other problems resolve, such as my productive cough, wheezing, leg/feet cramps. Although I thought the IP was tolerable, maybe it wasn't. Apparently my kidneys didn't think the IP was tolerable.
What I am thinking is to continue Benicar 4X a day, but to to stop the Z and mino for a couple of weeks, which I believe is in keeping with what you are saying. Please correct me if I am wrong.
After I return from Montana and have been off the antibiotics 3 weeks, I will ask my doctor to look at my blood work, and if it is OK, start back on the mino and this time only move up if my fatigue is far less.
It is disappointing because I am feeling so great about being in mid-Phase II and killing all those bacteria, but apparently I have overdone it. I really did feel like the IP was tolerable. Maybe I am just a tough old bird....
What really freaked me out was the eGFR and the internet stating that value meant I was in moderate and chronic renal failure but apparently I am not, which is a relief. I love my kidneys and I would like to keep them for a while.
Dr. Marshall, I read all of your papers and I watch every single video, some multiple times. I read the paper and watched the video on the kidney sensitivity due to pathology. The piece I couldn't put together was my individual very high BUN, not knowing if that constituted an urgent intervention or not, and not knowing exactly how to respond in managing my IP, so I thank you kindly for your help. I think I can go to Montana and not be freaked out the whole time.
Also, Barney, thank you so very much.
Last edited on Fri Feb 27th, 2009 14:26 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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Deedee
Member
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Posted: Sat Feb 28th, 2009 02:21 |
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Regrouping and apologies for being flaky.
My husband helped me re-read the recommendations, Dr. Marshall, and he thinks your post was closer to saying reduce, not stop the antibiotics. I herx less on 25 or 50 mino and always notice more herx at 75 and 100. So the plan now is 50 mino every other day, Benicar 4 X per day and re-test in several weeks, then begin again but more slowly, and using fatigue as a barometer for ramping.
Last edited on Sat Feb 28th, 2009 02:25 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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Chris
Moderator
| Joined: | Wed Oct 24th, 2007 |
| Location: | New Jersey USA |
| Posts: | 585 |
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Offline
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Posted: Sat Feb 28th, 2009 17:14 |
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DeeDee,
That fatigue is sneaky. While it varied a bit, I thought only of the deep fatigue as herx. Until lately that is. I switched antibiotics, and found myself feeling downright bouncy for parts of the day. It was all herx. Patience is required. It took me 4.5 years to get to the bouncy day.
Chris
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sarcoid since 1983 (or much earlier), MP since summer 2004 Chris' story
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Deedee
Member
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Posted: Sat Feb 28th, 2009 17:29 |
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Thank you, Chris. It has been a rude awakening for me to realize how ill I am. Between the statins (CoQ10, naicin) and anti-inflammatory (Vit D) I thought I was fairly healthy and just had some annoying aging problems prior to diagnosis. Now I am realizing that my terrible lipids, joint pain and muscle aches were part of the disease, and not part of normal aging. I have been stunned to realize that my kidneys and (probably) spleen are showing infection. Although I have realized many improvements such as resolution of my (misdisagnosed) "asthma" and 90% resolution of my (misdiagnosed) "plantar facitis" since beginning MP, I see I have a long haul ahead. My biggest challenge has been to determine what is "tolerable" IP and what is not. I must have high pain tolerance. I have been told that before by doctors and massage therapists, but I think it may cloud what I should be tolerating and what should be considered intolerable. Once I get my kidney function calmed down by reducing IP by reducing antibiotics temporarily, I plan to wait longer before ramping up and pay more attention to fatigue as an indicator for IP. I am also thinking about perhaps a modified Phase II so I can get on all 3 antibiotics sooner. I am supposedly "stage I" (ha-ha, like that means anything) and so I thought I was catching it at an earlier stage, but now find that I maybe am not at such an early stage as my chest cat scan indicated. When people said that the Z could sneak up on you, they weren't whistling Dixie.
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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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Dr Trevor Marshall
Foundation Staff
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Posted: Sat Feb 28th, 2009 21:27 |
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It has been a rude awakening for me to realize how ill I am
Once you realize that, DeeDee, you are on the path to recovery. The only folk who fail to recover are those who cannot grasp the concept of systemic illness. The reason our science is being more quickly picked-up in China than in the West is that the physicians are dual-trained in traditional and western medicine, and the traditional emphasizes the "essential unity" of the body.
Don't hurry to get on multiple antibiotics. In the last 12 months, as the science cleared the last remaining question marks about the disease process, we realized that it is the body's immune system which does the key tasks of bug-fighting, and as long as you keep the Benicar dose frequent enough to re-enable the VDR, you will be making at least some progress 
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Deedee
Member
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Posted: Sat Feb 28th, 2009 22:42 |
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Many thanks and I will follow your recommendations and advice.
Last edited on Sat Feb 28th, 2009 23:21 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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JoshR
Member
| Joined: | Mon Aug 18th, 2008 |
| Location: | NSW, Australia |
| Posts: | 445 |
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Offline
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Posted: Sun Mar 1st, 2009 16:01 |
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| Taking Benicar is one of the best things you can do for your kidneys. See Benicar and kidney disease.
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5/6 CFS criteria, 125D36 Ph1Jul08 Ph2Sep08 Ph3Feb09 25D8(Sep08) NoIRs covered up (except hands) low lux home minimal light exp r/t work
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Deedee
Member
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Posted: Sun Mar 1st, 2009 16:17 |
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Josh--Remember posting this to me a couple of weeks ago "Just to warn you, I find that the IP is worst in the last 2-3 days of the 10-day cycle. Enjoy the good days while they last!" ? I remember...you warned me.
Thank you for the Benicar link. I love the way information is being organized. I am taking the Benicar 4X a day. I also saw the new layout describing Phase I, and the charts showing how long it takes on the average, for each Phase, is very helpful. The "ramp up" every 10 days with tolerable IP approach proved to be a bit ambitious for me.
I feel very reassured by the information and support I have received from the moderators and Dr. Marshall. Thank you so much.
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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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Deedee
Member
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Posted: Fri May 15th, 2009 01:04 |
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I have most of my new labs since I dropped down to Phase I to control my IP. I was in mid-Phase II with 64 Zith, Q6 Benicar and 100 mino when I got lab results with a very high BUN of 40 (in February.) Since that time, I have been on 50 mino and Q6 Benicar to control IP. I started taking Quercetin twice a day for spleen pain and big fat lymph nodes. My lymph node swelling has diminished, my spleen does not hurt as badly or as often, and I am not as tired (but still experience some fatigue almost daily, especially toward the evening.)
The good news is, just as Dr. Marshall and all of you told me, my BUN returned to normal. My BUN was the highest I had seen on any of the posts, so it really frightened me. My renal values were/are
Feb Now Normal Values
BUN 40 21 7-25
Creatinine 1.16 .97 .6-1.10
I hope this helps the next person that gets a high BUN, so you are not afraid.
YEAH! GREAT RENAL LABS! So the big lesson for me was to not freak out over some funky lab values. I really put myself through a lot of unnecessary stress over those lab values. Thanks to all of you, my doctor and Trevor Marshall, you got me calmed down AND YOU WERE ABSOLUTELY RIGHT!
Which is why I am not going to freak out over these new and slightly funky other lab values:
WBC 3.7 (normal 3.8-10.8) I have never had a low WBC before.
Neutrophils 1765 (normal 1500-7800--so they are on the low side. I read the MP site on labs and it said if you WBC is low, check on your neutrophils, as well.)
ALT 46 (normal 6-40) I have had slightly high before (41-42)
CO2 20 (normal 21-33) This has been around 20 for several lab results
CRp 4.3 (down from 6.4 in Feb.)
Lipids worse:
10/29/08 02/19/2009 Now
Triglycerides 376 258 318
Cholesterol 350 281 312
HDL 50 61 (one bright star!) 52
LDL 225 168 196 Ratio 6.0
The help I need from experienced members is this:
With this information, would you move forward on MP and start ramping up, or back down to 25 mino until some of these other labs move into a normal range?
Also prior to the MP, I was on Metformin for insulin insufficiency. I have seen some MPers on here who take Metformin. Would it be prudent to go back on the Metformin until some of the lipids move back into a more reasonable range, and then slowly go off of the Metformin as the MP takes care of the inflammation driving the high lipids?
I still have considerable fatigue and weird aches and pains that come on strong and then disappear (IP) even on the 50 mino, but nothing like it was for the first 6 months. . I have realized many improvements since starting the MP almost a year ago, including better breathing, knots in muscles and feet gone, knot in right arch gone, knot in thumb 1/2 the size, far fewer leg and arm cramps, less light sensitivity.
I don't have my D results back yet, but I have been diligent about avoiding D in diet. I cover up when I go out.
I will have an appt with my doctor next week.
Many thanks in advance for the benefits of your experience and expertise!Last edited on Fri May 15th, 2009 01:14 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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Barney
Moderator
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Posted: Sat May 16th, 2009 00:50 |
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Deedee,
We try to use only MPmeds but if you feel you have to take something else, that has to be your decision.
Metforim is for blood glucose....who suggested it for lipids?
Lipid meds do a real number on a lot of people's muscles....have friends with this problem.
Trevor says we could posssibly have irregular kidney function test results, but they will turn around on MP. Need a link...let me know.
HANG IN THERE, WE WILL MAKE IT!!!BARNEY
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Sarcoidosis diabetes asthma| loss r/kidney| hysterectomy osteoporosis| Start MP 1/1/05| My Story| ABC of MP| Bacteriality|
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Deedee
Member
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Posted: Sat May 16th, 2009 01:27 |
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The insulin insufficiency creates more chloesterol, along with the inflammation driving the lipids. The metformin helps control the insulin insufficiency, which in return helped me with my lipids and weight in the past. However, now that I am on the MP, the MP is my priority. I don't want to do something that would interfer with the MP, but my lipids are high also. I did notice some MPers using metformin, but it is on the "do not take list." So that is why I have the question. I wonder if such high lipids are dangerous while I am waiting for my system to correct itself and if it would harm me or my progress on the MP to take the metformin while I am progressing through MP, reducing it as my lipids correct. I had a similar question before and was advised that the MP would take care of the lipids, but not sure if I am progressing as I should in this regard, with my lipids getting worse, not better. Maybe not enough time has passed? I am not sure what time frame I should be looking at for lipid improvement and what kind of risk my present lipids may or may not present.
Barney, the lipid values do tie in with the questions about whether to drop back, stay where I am, or ramp up. To control high lipids, I had been advised to control IP better. (I guess I should note that prior to my diagnosis or MP, I struggle with lipids for decades, only getting them "under control" with naicin, red yeast, CQ10 and metformin. I went off of all of that when I went on MP and my lipids returned to their former awful state.) I am presently at 50 mino/benicar in Phase I, dropped down from mid-phase II. Considering my lipids, my high ALT and low WBC values, would most people wait until those get in line before proceeding with ramping, or would they even drop back a bit before ramping? Or, should I just stay where I am and retest in a month? Which course seems most prudent?
I feel prepared to tolerate out of range lab values if this is in keeping with the MP and what has been seen in the past. On the other hand, I don't want to put myself at risk by going too fast. My kidney functions are fine now; they adjusted just as TM said they would and I believe rather quickly! Therefore I do not need a renal link,, but thank you for asking. I think I have exhausted all of those links and I have a handle on the high BUN. The new high ALT and low WBC and worsening lipids is what presently has me stumped. Advice by more experienced MPers who have "been there" on how to strike this balancing act ( go back, stay here, go foward..) will be appreciated.Last edited on Sat May 16th, 2009 01:48 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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Barney
Moderator
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Posted: Sat May 16th, 2009 01:51 |
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Deedee,
My lipids are never where they are supposed to be, but I do not want to take anything for it but MP meds and will wait for it to be brought around by MP meds...but your choice is yours. You should discuss this with doc.
I would not go backwards on MP, if the lipids is the reason but I found you a link to study to see what to do while on MP.
Marshall Protocol FAQs (Required Reading) > What should I do about my high cholesterol and/or triglycerides?
Hope this will help you make your decisions of what to do.
HANG IN THERE, WE WILL MAKE IT!!!BARNEY
Last edited on Sat May 16th, 2009 01:53 by Barney
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Sarcoidosis diabetes asthma| loss r/kidney| hysterectomy osteoporosis| Start MP 1/1/05| My Story| ABC of MP| Bacteriality|
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Barney
Moderator
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Posted: Sat May 16th, 2009 02:01 |
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Deedee,
I forgot to tell you that since my GP is helping me do MP, I agreed to try Metforim and I had 5 side effects 1. the worst burning like heartburn only 1000 times worse and 2nd worst was it felt like someone ground up glass and made me swallow it with no water.
I would never try that again.
HANG IN THERE, WE WILL MAKE IT!!!BARNEY
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Sarcoidosis diabetes asthma| loss r/kidney| hysterectomy osteoporosis| Start MP 1/1/05| My Story| ABC of MP| Bacteriality|
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