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Deedee's progress

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Leroybrown
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Posted: Tue Dec 29th, 2009 15:26

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Hi Deedee,

Good luck to you and Gary for a speedy recovery. Let us know how it goes.

____________________
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

Deedee
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Posted: Tue Dec 29th, 2009 20:32

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I have a very good report on my husband. The doctors said the cath showed mild plaque, all the stints were good except one had some occlusion but because the pressures were good, it did not require another stint. For someone with SEVERE CAD diagnosis 10 years ago, this is a great report. He said he called in technician to look at the stints "so he could see someone who is still alive that has those old of stints." They think it was perhaps a bout of a-fib. He has had a fib before, but perhaps because of the cold weather and exercising when feeling tired after 2 weeks of not exercising, it just set his heart into an arrhythmia.

Thanks to everyone for your enouragement.

Last edited on Tue Dec 29th, 2009 20:37 by Deedee

____________________
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)

Deedee
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Posted: Tue Dec 29th, 2009 20:45

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Also, FYI, they had no problem with continuing the Benicar and they taped the MP emergency protocol on the chart. The anesthesiologist and the surgeon read the guidelines prior to surgery. They never questioned any of it.

freddie ash
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Posted: Wed Dec 30th, 2009 00:55

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HI DEEDEE

This is Fred in WV. That is great news about the mild plaque and all the stints. I have not had any problems with my doctors over staying on the MP. I just had my pacemaker replaced on Sept 10 and cataract removed from my right eye on Oct 12 this year.

My the way where in WV did you meet your husband?? I live just outside of Huntington. Thanks for the update.

Remember, we are all in this together and I am pulling for us.

Your friend in sarcoidosis

Freddie

Deedee
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Posted: Wed Dec 30th, 2009 01:13

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Hey Freddie. I am thrilled (and exhausted)! My husband's lungs are so scarred I was afraid of the possibilities because another doctor had told him he had all of the stents he could have (meaning bypass the next time.) So what a relief!!! It seems he may have over-done the exercise when he was not feeling well and had an arrhythmia that eventually passed and he went back into sinus rhythm. I am going to make him PROMISE that if this ever happens again he does not DRIVE HIMSELF to the hospital like he did this time.

After reading the article on the remodeling the Benicar does for arteries, I can not help but wonder if the Benicar, plus his diet and exercise, have worked together to help keep the plaque from accumulating to dangerous levels again. We had been told he had very aggressive and severe CAD 10 years ago.

My husband and I met in Fairmont W.VA. He was studying to become an RN and I was studying to become a Registered Respiratory Therapist. We don't do that kind of work anymore, but it has helped us alot in understanding medical terminology and disease process. That understanding helped us decide the MP was right for us.

We were very relieved we did not have to fight with anyone over the Benicar or MP emergency protocols.

Deedee
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Posted: Fri Jan 1st, 2010 17:01

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Update:

100 mino
Q6 Benicar
Quercetin 2X per day
guaifenisen prn

It was obviously very stressful with my husband in the hospital and although I am giddy with relief that he is OK, I am exhausted. My throat feels especially tight, with food getting stuck probably from the nodes, and a tickle in the middle of my chest. Again, probably nodes. I even have some popping sounds on end exhalation. I have noticed, however, less spleen pain over the last week. I have all kinds of ideas of projects I would like to do, but little energy.

Plan: Continue as above, re-test first week in Feb to see if lipids any better on Phase I with Quercetin. Gets lots of naps. Get back on my low-carb diet following the holiday sweets.

Happy New Year to all.

Deedee
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Posted: Thu Jan 7th, 2010 12:29

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Update:
100 mino every other day
40 Benicar 4X per day
quercetin once per day
guaifenisen once per day

Feeling better. It took some time to overcome the stress and shock of my husband going through the heart cath, which made me think of Barney and the terrible shock she endured with the tragic lightening strike....still keeping you and yourr family in my prayers Barney. Nodes less swollen, throat no longer feels fat and full. no spleen pain. minor muscle aches. Sleeping well. Good mood.

Plan: Continue on as is until the first week of February. Retest my lipids, evaluate, and consider a Clindy or Zith alone.

Joyful
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Posted: Fri Jan 8th, 2010 00:45

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Hi Deedee.

Yes, the stress can really set many of us back. I'm glad the outcome was so positive anyway.

It is considered a better idea to always keep Mino onboard with any of the starting combinations (unless you substitute the more expensive Deme).

There are reasons based on the science behind the MP, but I'm not pulling them up by memory right now.

So, if you meant by "Clindy or Zith alone" that you would drop the Mino, maybe you need to reconsider that plan?

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Deedee
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Posted: Sat Jan 16th, 2010 04:26

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Update:

100 mino every other day
40 Benicar 4 X per day
Quercetin 1X per day
guaifenisen prn

Feeling better with only some tenderness on bottoms of feet, mild sinus drainage mostly last week (not a cold). lymph nodes less swollen, but I still know they are there. I continue to get deep tissue massage once a week which helps keep the lymph system moving. Overall good mood with some situational dips.

Plan: continue as is, retest in February for lipids and make decision on next steps.

Deedee
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Posted: Tue Feb 2nd, 2010 03:07

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update:

100 mino every other day
40 benicar 4X per day
Quercetin 1X per day
guaifenisen prn

Several weeks ago I noticed needing a lot more sleep. 2 weeks ago my leg and feet muscles were causing some pain, but nothing like a year ago. Massage and aspirin helped, along with some extra guaifenisen. Last week I went to Florida and enjoyed kayaking down a small spring in a swampy area. I also noticed that I have suddenly become sensitive to spicy and garlic foods and have reflux from this. The last two days I have had very good energy and was able to exercise some, but still need the extra sleep. I usually sleep 8 to 9 hours and take one or two naps in the afternoon that last anywhere from 1/2 hour to 1.5 hours. My lungs feel especially well, and I only feel a slight presence of some irritation in the left bronchi. Mild wheeze after shoveling snow in the cold. I guess the biggest issue I am having is fatigue, although I do have bursts of good energy.

Plan: retest my lipids within the next two weeks and consider Clindy again.

busytchr
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Posted: Wed Feb 3rd, 2010 20:10

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Hi Deedee,

Sounds like you are managing fairly well. All that rest is really good for you. That sounds much more manageable than the insomnia on the MP that some have.

Can anyone tell me what quercetin is, and what it does? Is this something to replace tylenol?

Thank you for the PM the other day.

Tamara

____________________
Sarcoidosis biopsy Oct 2009, Bilateral Hilar lymphadenopathy. Hashimoto's thyroiditis 1988. Vit D Jan 2010 = D25 <4, D1,25 43. Levoxyl .1 mg, fluoxetine 20 mg. Avoiding Vit D since Oct 09.

Sallie Q
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Posted: Thu Feb 4th, 2010 01:10

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Hi Tamara
nope, quercetin does not replace tylenol the way tylenol replaces aspirin

Trevor Marshall posted Sept 09
“ Quercetin was something we introduced quite early in the study (2004, if I remember) and results are very variable. We are suggesting Guaifenesin at this point as a first-line palliation. ”
eClaire replied
“ VARIABLE. When I took quercetin even once or twice a day for one day, I would end up with a pretty intense rebound affect... my IP would be worse than before the quercetin. ”

Deedee
I hope you and Gary are still doing so much better
I could do with some sleep myself, have only had 2 good nights last month (one last night) as on higher doses of bactrim my bladder has taken control of my nights :-(
Enjoy while you can!
Sallie

____________________
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| http://mp-lifestyles.org/category1/ |
food-gear-problem chat MPstudy members (& Dir.)

Deedee
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Posted: Thu Feb 4th, 2010 02:51

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Here is the knowledge base link on quercetin: http://mpkb.org/doku.php/home:othertreatments:quercetin
and here is the link to non-MP drugs: http://mpkb.org/doku.php/home:othertreatments

"In the manner of a drug, quercetin inhibits part of the inflammatory cascade. Quercetin is used by some Marshall Protocol (MP) patients to partially reduce intolerable immunopathology, especially symptoms of fatigue, muscle pain and cognitive dysfunction (i.e. brain fog)." MPKB

I do not use Quercetin to replace pain killers. If I experience a lot of muscle pain, I use aspirin. Massage also helps me with the muscle aches and also seems to help keep the lymph system moving. Massage has reportedly made others feel worse.

I am using Quercetin to try to dampen the IP I am experiencing in the form of out of range lipids, muscle pains and lymph node swelling. This is more or less an experiment that my doctor proposed....to dampen the IP for 60 days and see if I felt better and the out of range lipids would be better.

I feel a whole lot better. I am still having IP, the most impressive being the fatigue, but for the last 2 days I have felt fantastic. I even shoveled snow for several hours and exercised with my Wii two days in a row afterwards. I have had a good mood, as well. My my lungs feel extraordinarily good with the irritation and tickle in my left bronchi totally gone. Today I saw my massage therapist and she agreed that my lymph nodes felt normal, or at least very close to normal. I can easily feel my jaw line now. I feel like I can take a deeper breath than I can remember taking ---ever. My spleen and my chest are not hurting from my lymph nodes anymore. Of course, this may all return again, especially if I go back to Phase II but for right now it is amazing improvements that would not have occurred without the MP.

This reminds me to say, that I have been thinking that we often talk about the pain or uncomfortable IP and how to manage it, but I don't think we talk enough about how much we are improving at the same time. For new people, I think they may hear a lot about the down-side of MP (the IP) and not so much the upside, which is all of the lasting improvements. All of those little knots under my skin on my legs and feet were gone after about 6 months on MP and they never returned, for example.

I have experienced none of the rebound others may have experience with Quercetin. I have used Quercetin on and off to help dampen IP earlier in the process, but this is the first time I have tried it for 60 days in a row.

It is advised not to take Quercetin unless it is truly needed to dampen the IP. In my case, I think it was worth trying. We all have to figure out what works for us as individuals and what does not, within the guidelines of the MP.

My husband is doing very well. He was out on the tractor moving snow around for hours Sunday and yesterday. It is his big Tonka Toy. He has not had any more chest pain and he feels very good that he got a positive report from the heart cat. He is still short of breath a lot and we hope to see that improve as time goes on, but he still does just about anything he wants to do except climb high mountains or go to high elevations.

Last edited on Thu Feb 4th, 2010 02:55 by Deedee

Deedee
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Posted: Mon Feb 15th, 2010 19:31

Quote

update:

100 mino every other day
Benicar Q6
Quercetin 1X per day
guaifenisen

I was feeling very well with lots of energy, no lymph node swelling and no tickle in chest. I was even able to exercise a few weeks. I felt (*gulp*) normal for a few weeks. I visited my son and daughter-in-law over the weekend and my lymph nodes became swollen, I have some nasal irritation and I feel pretty wiped out. I have had some sneezing and a bit of chest tickles but not too much. My eyes feel gritty.

The plan was to reduce inflammation and get my lipids and bloodwork recheck in early February. I was feeling so great and was hoping that my labs would look better before evoking more IP in Phase II. However, with this recent IP flare, I am sure my lipids and other inflammatory marker labs would not look very good right now.

I called my doctors office to ask if I should hold off until this episode is past, and it turns out my doctor is out of town until March 1st. So I will wait until the nodes are back down before repeating the lab work. If I am not better in 2 weeks, I will go for an office visit. I am taking guaifenisen to help reduce the inflammation.

This will likely push me into another month in Phase I and I have been on the protocol for 18 months. The last two attempts in Phase II provoked too much inflammation and IP and I had to back down to Phase I. I would like to be able to move forward, and it is disappointing to have my nodes swell again.

jcwat101
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Posted: Thu Feb 18th, 2010 22:22

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Just remember that although it is nice to be able to add antibiotics because it gives one the feeling of progression, having IP without as much antibiotic is not a sign of going backward or not progressing.

Having a lot of IP without any antibiotics (or with fewer) is a sign of one's immune system getting stronger

Joyce Waterhouse

____________________
20 years with CFS/FM/Lyme/IBS, MP info: http://mpkb.org, food/supplement/medication allergy/sensitivity info: http://SynergyHN.com

Deedee
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Posted: Fri Feb 19th, 2010 03:02

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Thanks so much for the reminder. I see a big link with IP and anxiety for me. It is hard to remember when I feel bad that I am progressing. My husband keeps saying, "its IP" but my fears come out and say, "its sarc."

I had big nodes for several days and required a lot of sleep. Today the nodes are down somewhat and I am blowing my nose with some thick clear mucous with yellow flakes. My sinus ache a bit, as well. I can feel the nodes in my chest, but my energy is better. I also have some dark circles under my eyes. In the 1980's I was plagued with sinus infections. They seemed to resolve when I gave up milk and most milk products.

I am taking extra care with light exposure, drawing the curtains again and wearing eye protection during this IP. Also taking extra guaifenisen and quercetin. Getting as much sleep as my body tells me. It is getting less intense.

This could be more resolution of sinus involvement, or an allergic reaction to dust over the weekend, or both. Who knows? I am looking forward to a good massage tomorrow to help get the node system moving.

JoelV
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Posted: Fri Feb 19th, 2010 23:09

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Deedee, when was the last time you got a diagnostic such as a biopsy, x-ray or a CT scan? I see from your signature that all your labs are normal, I assume that means ACE as well. How high was it before you started MP?

(Mine was 250+ before I went on steroids and I'm afraid it's going back to those heights again.)

____________________
Sarcoidosis, symptoms: dry cough, fatigue (confirmed via histology Aug/2009)
Possibly starting MP in Mar/Apr/2010

Deedee
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Posted: Fri Feb 19th, 2010 23:46

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I have never had an ACE test. I have heard it is not reliable and none of my doctors use it to track inflammation.

All of my labs are not normal. My lipids are very out of range, as is my CRP. These are inflammatory markers. With my last lab test, however, I had normal calcium, ALT, WBC and BUN, which have been out of range before. My SED rate has always been normal, which is also used to track inflammation.

I was diagnosed by mediastinoscopy in July 2008 after swollen nodes were found on an MRI for fibrocystic breasts. I also had a chest Xray cat scan and PFTs. It showed up in my nodes, but not my lungs. I did not have an abdominal scan. I had a repeat chest Xray and PFT a year later. The chest Xray was improved and so were the PFTs. The pulmonologist was very happy about this and told me not to come back for a year unless I started felling bad. I have another doctor that helps me with the MP.

I had a heart cat scan a couple of months ago because I was so freaked out over my high lipids. I had ZERO plaque. That really helped reduce my anxiety over the high lipids.

Remember out of range labs are not the CAUSE of sarc, but indicators you are having chronic infection and inflammation, and/or organ damage from the granulomas (in more severe cases.) Steroids may make your labs look better while the bacteria is having a field day in your body. This happened to me when I took Vitamin D. My lipids looked great. Oh yeah. Was I ever happy about that....until the MRI showed the nodes. I had signs and symptoms of sarc, including high calcium and high lipids up to a decade earlier but the docs could not figure out why because other than the lipids and an occasional slightly out of range calcium or ALT, everything looked great, even when I didn't feel good. Once I took the D, I had great labs while I was getting sicker and sicker, until it showed up in the form of a garden of swollen lymph nodes in my chest. So don't think that a low ACE means you are better. The steroids (like Vitamin D) just dampen the inflammation and symptoms by throwing a wet blanket on your immune system, while allowing the bacteria to go nuts.

Feeling a little bit better today. I had lymph drainage today with my massage therapist and my nodes are smaller and softer already. I am surely fighting an infection of some kind--either the sarc biofilm or a sinus something, maybe an allergic reaction. Maybe all three

I am having post-nasal drip and a little sneezy with some irritation in my nose. Nothing bigger, like a bit sinus infection or a nasty cold, but just enough to let me know my sinuses are upset and my body is fighting something.

JoelV
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Posted: Sat Feb 20th, 2010 13:34

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I know that the ACE labs are not completely trustworthy, as they are not elevated in some people with the disease. Although in my case they were perfectly in correlation with how bad my cough and weakness from the sarcoidosis was. As soon as I started steroids (big mistake), my cough was gone and the ACE was down to "almost-normal". As soon as the prednisolone dropped to 10mg/d, cough started coming back and ACE went a bit up again. I guess now that I'm off the prednisolone, the ACE is probably in the hundreds again.

____________________
Sarcoidosis, symptoms: dry cough, fatigue (confirmed via histology Aug/2009)
Possibly starting MP in Mar/Apr/2010

Deedee
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Posted: Sat Feb 20th, 2010 13:51

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Do you feel bad? Where is you D level?

Like I said, when I took the D, my lipids were normal, but then again, I had a chest Xray in 2001 when I had the high calcium and nothing showed up. AFter I took the D in 2007-2008, my nodes swelled and filled my chest, which lead to the diagnosis. So what I am saying is that although the pred reduced inflammation and normalized the labs for you, it does not stop the disease.
Have you tried guaifenisen for the cough and inflammation?

Last edited on Sat Feb 20th, 2010 13:51 by Deedee

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