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Leroybrown
Board Staff
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Posted: Wed Aug 12th, 2009 16:55 |
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I am very happy today, I have finally found and booked an appointment with a MP doctor. The appointment is on Sept 25th by telephone, as the doctor is in Vancouver. I would have travelled, but just as well. This way I get to save my $ for drugs.
I am currently going off cyclosporine, and am hoping my severe anemia doesn't return. Only time will tell, but at least I won't have to wait 2 1/2 years to try the MP treatment.
I do have a question about the MP: when you first start it, do you get a worsening of your autoimmune disease? I ask because I really have to keep an eye on my hgb.
Thanks.
____________________
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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Knochen
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| Joined: | Wed Oct 17th, 2007 |
| Location: | USA |
| Posts: | 467 |
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Posted: Wed Aug 12th, 2009 18:02 |
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Hi Leroy,
First off, congrats on finding an MP doc! Just remember that YOU need to be the one following all the details on the protocol, so keep reading and learning. Most docs are there primarily to write the Rx and may not be fully up to speed on the MP or even try to modify it. It really is in your hands, with the doc as a facilitator. "The MP and only the MP" should be your mantra.
There are many of us who have continued to work on the MP, but you will need to pace yourself and make your work situation as comfortable as you possibly can to help with the extra fatigue and need for light control.
I work in an office with walls that are all windows, but I'm about 40 feet back and not directly exposed. Still, there's a lot of sunlight around in the place and therefor I had to always be sure to wear long sleeves, with a black long sleeve undergarment (Zensa in my case) and also daily wear of the invisible zinc oxide sunscreen. Noirs, naturally. When my light sensitivity was at its worst, I did have some issues, but it was mainly tolerable. Driving back and forth to work every day was far worse, even with a lightproof jacket and hat and gloves. Still, I was able to do it and it's likely you will too. This is all the more reason to have your house well and truly light tight - you'll need be getting enough exposure as it is!
You'll want to control your diet very closely, so if you aren't already bringing your own lunch and snacks to work, plan to from now on. There are few things from the lunchroom you can trust, so it's always better (and cheaper) to play it safe. If you need some guidelines, have a look at my recipe site
http://www.mp-recipes.com/mp_recipes.html (more stuff there soon!)
When you start the MP, your disease itself won't be getting worse, but you may feel worse; in fact, that's almost a given. Just make getting well your top priority and do what you have to do to stay working. You have to take the long view, and plan for a lengthy period of feeling lousy. Have your house and workplace ready to go before you start. Have your various Noirs in hand before you start. Have your diet plan ready. Prepare your family for your nee to stay indoors and not overdo, you need to rest as much as you can. If you don't have an indoor hobby, start thinking about one  . Expect and be ready to accept that there will be days where you are going to be hit hard by the immunopathology. None of us are superman!
Good luck with your office visit. Start getting your ducks in a row and educating family and friends about your upcoming journey. Some will be behind you, others may not. Better to know ahead of time who's who when you are fighting for your life and health.
____________________
I can help you understand the recovery process, but only your physician is licensed to give you medical care.
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Leroybrown
Board Staff
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Posted: Fri Aug 14th, 2009 18:09 |
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Hi Knochen,
Thanks for the advice. I'm going tomorrow to look at getting the glasses. There's a good optical place near me so I'm going to start there.
In the meantime, I'm on a countdown to my Sept 25th appointment, but it is getting a little scary.
This week:
- been on 1/2 my regular dose of cyclosporin and felt really great until about Tues.
- Tues I got sick on the way to work (had to pull over and hurl) thanks to antibiotics (Macrobid) I got on Sunday for a UTI. They don't mix with cyclosporin, at least not in my stomach.
- got my meds changed Tues night & felt a lot better Wed. I wish the hematologist knew about the MP.
- rode my horse in the heat on Wed evening, felt fine. Wore long sleeves & helmet so not too much sun.
- was out running around with my dog at agility yesterday with t-shirt & shorts and almost got overheated. Had to sit down and drink water, then decide if I was going to feel sick or not to be able to drive home (30 mins away, I made it). Drank lots of water last night and felt ok.
- felt vaguely queasy this morning, went to the hospital to get a CBC just in case my hemoglobin was dropping. Drinking lots of water today.
Jul 30 - hgb was 103, today Aug 14 it is 97.
I am tired, it's been hot, I haven't been sleeping as much as usual, and I've probably been overdoing it since I felt better on less meds, and it could be a natural fluctuation. But my hgb dropping is scary because that's what I'm being treated for, and I was hoping my count would be stable so I could get off the meds and start the MP in Sept. Now I wish I didn't have to wait that long.
I am trying to avoid the next course of treatment: ATG which from what I understood, makes you permanently immune-suppressed.
I think I can handle IP (except being stomach sick - hate that but will put up with it!) knowing that my hgb was at least stable. It's the unknown that is the worst. And the waiting, and the wondering if this will help my very rare condition.
Oh well.
____________________
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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Knochen
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Posted: Fri Aug 14th, 2009 19:24 |
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Hi again,
Yeah, I know all about the nervous time before the appointment, but it'll be OK. Just use the time wisely to bone up on the MP and rehearse your arguments so you don't get flustered and defensive on the big day.
Thanks for the advice. I'm going tomorrow to look at getting the glasses. There's a good optical place near me so I'm going to start there.
You may have better luck just mail ordering the Noirs. You can't skimp on this, they have to meet the specifications laid out, or you'll suffer the consequences. Bolle 100 isn't made any more as far as I know, and there is virtually no other substitute.
http://www.noir-medical.com/adult_styles.htm
You'll probably want the #35 style frames. You need the 2% and the 10% amber lenses.(mention the MP and they will know what you need, I think. You can also ask about the MP discount) if you need fitovers, then take a look at the various ones on that page.
It sounds like you are getting a lot of sun at the moment. Have you had your D levels tested yet? Do you have a diet plan in place?
I can't speak to your hgb levels, since I'm not a medical person, but you may see some fluctuation once you start on the benicar. Since you are in pioneering territory, I would say just see where it goes, expect it to possibly dip for a while before coming back as your body readjusts. Labs can get a bit strange as you make the transition and as the IP increases.
I think in your case you should do all you can to minimize IP just to be on the safe side. Sadly, that will mean curtailing your outdoor daytime activities until you know how you are going to react. Better to eliminate as many variables as possible. Some people are very sensitive to the sun within a couple of days, and others take longer. And of course, much will depend on your Vit d levels when you start as well as how quickly your immune system bounces back from the cyclosporin. You should probably research how long it takes for that to wear off completely. Your IP will probably start to jump then, so you don't want to rush. You might even want to stay on benicar alone until that process is complete, just out of prudence. It's something to discuss with your doc. The recommendation recently has been that a good baseline is being able to tolerate benicar Q4H (every 4 hours) before moving ahead. Obviously, you'll need to have your system free of all immunosupressants for that to have any validity.
Sounds like you are getting things in order. Start working on the house as soon as you can, just in case coming off the cyclosporin lays you out. You will really need a totally sunlight free place to retreat to once you start. I know I wouldn't have been able to do the work once I started the MP!
keep up the good work and don't over do it
____________________
I can help you understand the recovery process, but only your physician is licensed to give you medical care.
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Leroybrown
Board Staff
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Posted: Fri Aug 14th, 2009 21:37 |
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Hi there,
I will make sure I get the proper glasses, don't worry. I'm just not sure how to order glasses online, I always find it hard getting frames to fit. I know I can order them from NOIR and maybe the optical place can cut them. That's what I'm going to find out (I will bring the specs with me tomorrow and I'll make sure they know it's for a medical reason).
No I have not had the vitamin D tests since neither my GP nor the hematologist will order them. I can't even get in to see my GP for 3 weeks, the hematologist is going on vacation for the next 2 weeks. The dr ordering the tests is 3000 miles away and is trying to put them through a local doctor here (I'm still waiting on that). Hopefully I can do them soon.
Now - do you need the D tests to prove you have T cells? Because I had a bone marrow test which showed the T cells were the culprit, as I had lots of them and few red cells. They're apparently affecting my wbc too.
I can do more to stay out of the sun, I can ride indoors and agility will also soon be indoors. I take it you make vit. D even if you wear sun lotion? From what I read, your eyes do. That could be why I'm feeling crappier today - I was out for a short time under blazing sun yesterday (although I had on SPF 50). It's been so wet this summer that I really haven't been outside much at all.
The problem if my hgb drops too low is that I'll need a transfusion. I could probably stall going back on cyclosporin or ATG treatment for awhile, but I won't be able to hold out too long. Needing transfusions is not much fun.
Well, hopefully things will stablize!
____________________
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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jcwat101
Member*
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Posted: Sat Aug 15th, 2009 01:55 |
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I'm not sure where you got the idea that the D test can indicate whether or not you have T cells. You wouldn't be alive if you didn't have T cells.
I was wondering how this question arose for you?
Joyce Waterhouse
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20 years with CFS/FM/Lyme/IBS, MP info: http://mpkb.org, food/supplement/medication allergy/sensitivity info: http://SynergyHN.com
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Leroybrown
Board Staff
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Posted: Sat Aug 15th, 2009 11:22 |
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Hi Joyce,
well I figured since the D tests prove you have T cell activity/inflammation (presumably indicating the presence of too many T cells), but the bone marrow test already showed I have way too many T cells... would the D test still be necessary?
But maybe I misundertand the significance of the D tests? (brain not working properly is a very good possibility!!)
____________________
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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jcwat101
Member*
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Posted: Sat Aug 15th, 2009 14:52 |
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Of course, there are multiple kinds of T cells and they also have varied activities, so your bone marrow test would not be equivalent.
The D test indicates the level of a certain type of T cell activity, producing the Th1 response (Interferon gamma production -- the 1,25D part of the test).
Also, the D test indicates how much the innate immune system might be blocked.
So, I suggest you review some of the introductory articles on the MP site or on http://bacteriality.com
Here is an overview article I wrote that also covers the relevant topics:
http://winmlm.neostrada.pl/mp/townsend/Townsend_Apr07.PartOne.pdf
http://winmlm.neostrada.pl/mp/townsend/Townsend_Letter_May2007.Part2.pdf
Joyce
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20 years with CFS/FM/Lyme/IBS, MP info: http://mpkb.org, food/supplement/medication allergy/sensitivity info: http://SynergyHN.com
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Knochen
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Posted: Sat Aug 15th, 2009 17:38 |
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You'll also need to know your D levels to know if you are in the correct range for the MP to work properly. That is very important, because if the levels are too high the immune system is suppressed, which is just the opposite of what we want.
So in your case, I don't think you need it so much as a diagnostic tool, but more as a tracking tool for following the protocol correctly. If you have been taking supplemental D or eating foods high in D, you will certainly see that reflected in your lab numbers. Sun exposure can also have an effect.
The type of Vit D produced by the eyes (1,25 vit D as opposed to 25 vit D) is not going to slow your progress, but it can cause a lot of symptom flares, which can be very unpleasant. Trust me on this one!
____________________
I can help you understand the recovery process, but only your physician is licensed to give you medical care.
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Leroybrown
Board Staff
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Posted: Sat Aug 15th, 2009 17:59 |
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Ok, thanks. I will review those articles. Interesting about the T cells and the D levels. Yes, I would feel very much comforted by a tracking tool! I am going to get the D tests ordered through a local dr, I am just waiting to hear when to pick up the requisition form. And of course nothing ever happens quickly enough...!
I just went looking for sunglasses that block IR. Needless to say I'll be calling NOIR Medical on Monday. Do you know if they sell just the lenses? I saw some really nice frames here (Bolle) but the girl couldn't tell me if they blocked IR.
I'm feeling a bit better today. I think I got a major blast of sun on Thursday which made me feel crappy. I did an experiment awhile back, just before I found this site. I was reading about how Vit D is the answer to everything, so I started taking 5000 IU a day. On the 2nd day, I felt SO bad my husband told me to stop taking it. I know that's not a very scientific experiment, but I'll never do that again.
____________________
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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Knochen
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| Location: | USA |
| Posts: | 467 |
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Posted: Sat Aug 15th, 2009 18:16 |
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Yes, the Noir people do sell the lens blanks that can be cut to fit a frame (Non-Rx lenses only) but you will need to know the "base curve" of the lens you are replacing to order the right kind. You can find that out at the place that sells the frame (usually) Some shops may not be able to cut the more wrap around type, as the equipment isn't as common, so you need to ask.
If you buy some #35 frames and they don't fit, you can always sell them to someone here.
____________________
I can help you understand the recovery process, but only your physician is licensed to give you medical care.
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Joyful
Foundation Staff
| Joined: | Fri Oct 19th, 2007 |
| Location: | North America |
| Posts: | 1457 |
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Posted: Sat Aug 15th, 2009 18:21 |
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I don't think all of these articles have been brought up to date, but there may be some information of value here: Eye protection.
____________________
Search the MP Knowledge Base _ _ Be Kind, We Are All Fragile
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Leroybrown
Board Staff
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Posted: Tue Aug 18th, 2009 19:31 |
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A twist of fate - went back to the walk-in clinic about my UTI and the doctor was an old guy - the first one that ever asked me why I was taking cyclosporin. We chatted for awhile about PRCA, and long story short, I told him I was going to try the MP and - he ordered the 2 D tests!
There is a 4-week backup at the lab, apparently they are being flooded with D tests - word must be getting out - but I went this morning and should have the results before my appointment with Dr B in Sept.
I'm feeling a bit weak, but managed to ride my horse yesterday (indoors) and it felt good. Today I have an eye appointment. I figured the easiest way to go would be to get contacts, and see if the optician can order Noir lenses and insert them into frames of my choice. I've written down the exact lenses I'd need, and the contact info for Noir Medical. That way, I don't have to worry about lens curvature or whatnot - I already have enough to worry about!
Ok, 38 days and counting...
____________________
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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Leroybrown
Board Staff
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Posted: Fri Aug 21st, 2009 19:08 |
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Had my eye appointment. I picked out some nice sunglass frames and they are ordering the lenses from NOIR. I'm getting contacts too - bifocal contacts for astigmatism.
Had my D tests but then found out Diflucan(sp?) affects the results, and guess what I was taking?  D'OH!
Had another blood test Aug 20, HGB = 100, WBC = 2.0. That's really good news because I felt so crappy this week I was sure my HGB was dropping, but it isn't. I guess sometimes you just feel crappy. It'll be much easier starting the MP knowing my counts are stable.
35 days and counting.
____________________
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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Joyful
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Posted: Fri Aug 21st, 2009 19:40 |
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Hi Leroy.
What an amazing 'twist' to get your D tests ordered! That's great!
FYI: when you post lab results, please provide each one on it's own line with the units and lab range. That makes a better record for you and others to refer to later down the line.
And yes, some of us can feel pretty beat up--without any abnormal labs--from time to time.
____________________
Search the MP Knowledge Base __ Be Kind, We Are All Fragile
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Knochen
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Posted: Sun Aug 23rd, 2009 16:09 |
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Congrats on getting your D tests run so soon!
You may want to print this out and stick it on the bathroom mirror for those days on the MP where you wonder what you've got yourself into...
The problems of victory are more agreeable than those of defeat, but they are no less difficult.
- Winston Churchill
____________________
I can help you understand the recovery process, but only your physician is licensed to give you medical care.
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Leroybrown
Board Staff
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Posted: Tue Aug 25th, 2009 22:27 |
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Hello,
I will be starting the MP at the end of Sept so I've been doing lots of research.
My father died of sarcoidosis (lungs & thyroid) and had it since I was at least 3. He was originally diagnosed with TB. My 1st cousin had it as a teen, and his 1st cousin also had it as a teen. All were treated with prednisone.
18 years ago in my late 20s I had a high fever (104F) and extremely swollen glands in my neck. My GP suspected mono but was pretty sure it couldn't be (I had just had a baby, was married etc) but did the mono tests anyway, they were negative.
I ended up hospitalized with a raging sore throat and extremely swollen neck glands, low WBC (it went to 0, they could not find any neutrophils). I had a cough, that only codeine could suppress and somewhere along the line my HGB and platelets were also low and I remember needing a couple transfusions. I was on high doses of vancomycin (thus beginning the tinnitus), fever spiked to 106.2F daily for weeks. I had 7 or 8 bone marrow tests, chest xrays, countless tests but nothing showed up.
I've been reading about mono, glandular fever, Epstein-Barr virus and they go along with a high WBC, but my WBC was practically non-existent.
I had 2 courses of G-CSF injections which did nothing to help my WBC. Nothing at all worked until I was given cyclosporine liquid, my throat was too sore to swallow pills by that point, and I also developed a severe case of gingivitis. Had to stop cyclosporine due to liver problems - jaundice. I don't know how long I took it for but it was no more than about a month.
I got better after 2 months of severe illness, and went home. When they sent me home, they said my last bone marrow showed I had stage 4 bone cancer. I was just so happy to be feeling human again I didn't care what they called it. Since nobody ever brough it up again, I just figured they got my test results mixed up with someone else's, or that when I went off cyclosporine, my system fought off the cancer, or that they were just plain wrong. My WBC improved and over the next couple years, I got better.
After that I developed small red spots on my skin that look like either freckles or moles. They don't hurt and they're not sore, but I still have them.
So now 18 years later I get diagnosed with pure red cell aplasia - with low HGB and RBC, and my WBC is still low (it was up to 2 last week - yay!). I've had fatigue forever.
- So this week I was reading something about spouses & family of sarc sufferers have a much higer incidence of sarc. I have "lost" the links but I think it was from the marshallprotocol.com site.
- In my other Sarc research I have found:
(sorry about posting the links to those other sites, it's just where I found the info)http://www.stopsarcoidosis.org/sarcoidosis/symptoms.htm
[size=Sarcoidosis also can affect the bone marrow (soft, organic material that fills bone cavities), which produces blood cells. This can result in anemia, in which there are too few red blood cells, or a lowered number of white blood cells.]
[size=
]http://www.nhlbi.nih.gov/health/dci/Diseases/sarc/sar_signsandsymptoms.html
Sarcoidosis may affect your lymph nodes. The disease can cause enlarged lymph nodes that feel tender. Sarcoidosis usually affects the lymph nodes in your neck and chest. However, the disease also may affect the lymph nodes under your chin, in your armpits, or in your groin.
-- If sarc can affect your bone marrow (I definitely have marrow issues), how would it be diagnosed? Could the diagnosis of stage 4 bone cancer *possibly* have been sarc??? Because I have had something going on for the last 18+ years that *nobody* has been able to pinpoint. In fact, those biopsies from 18 years ago had been frozen and are probably still there. Are there any tests for unusual manifestations of sarc that would show I had it? Could you have sarc in just the bone marrow??
-- this does not change the fact that I am still going to do the MP, but it's just been kind of a whole lot of "eureka!" moments lately. In fact, if it *was* sarc, I would feel a whole lot better and a lot less alone in the wilderness (not that I want to have sarc).
Thanks to anyone who read this far. This has been quite a journey so far, and I've been able to connect a lot of dots... I don't know if the MP will work for pure red cell aplasia, but since I know 3 people who had sarcoidosis, I know the information in these websites about that topic are definitely right.
____________________
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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