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busytchr
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Posted: Tue Sep 29th, 2009 00:53 |
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Hi friends on the MP,
Just diagnosed with bilateral hilar lymphadenopathy with CT and must have biopsy to distinguish sarcoidosis from lymphoma next week. Dr. says sarcoidosis is very likely. I have had Hashimoto's thyroiditis for 25 years, am now 51. I have only begun to research the MP, and would like to be cured. But the light avoidance seems nearly impossible. I am a teacher, working in fluorescent lighting, driving a long way to school, etc. Does Herx keep many patients from working? My lungs are beginning to be affected. Seems I am in an acute phase currently. Do you recommend beginning treatment in winter months when days are shorter? I'm thinking Christmas break. I would love to see feedback from people who had serious illness with sarcoid but were able to turn it around. How were ill days managed overall. Etc. I'm very interested in the MP, but not sure about managing its effects. Thanks for all you have done already to have this website in place..... Nothing else like it out there, clearly.
Tamara
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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.
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Carole
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Posted: Tue Sep 29th, 2009 01:42 |
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Hello, Tamara, and welcome!
We have much in common; and yes, it IS possible to recover while teaching. There are definitely lifestyle adjustments to be made, but the time and effort put forth will be well worth the challenges and changes.
Please continue your research by studying the information in the following links:
http://mpkb.org/doku.php/home:starting:prempchecklist
http://mpkb.org/doku.php/home:starting
http://www.carouselcharts.com/TranscriptRecoveryLAX2.pdf
http://www.marshallprotocol.com/view_topic.php?id=1138&forum_id=32&highlight=Carole+working+on+the+MP
http://mpkb.org/doku.php/home:patients:patient_interviews
Best regards! . . . Carole 
Last edited on Sun Oct 25th, 2009 21:59 by
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Carole's Story
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Deedee
Member
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Posted: Tue Sep 29th, 2009 01:52 |
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I was diagnosed last June with lymphadenopathy by MRI, then Cat Scan. My biopsy diagnosed sarcoidosis. I started the MP right away. During the first 6 months, my light sensitivity was pretty profound, but not as bad as for some others. I did not want to wait to start the MP, and I made some changes at home and work so that I could reduce light exposure as much as possible. Read this link on light sensitivity: http://www.marshallprotocol.com/forum32/7328.html
In my office, I worked without the lights on and I wore NOIRS glasses. Driving to and from work, I covered head to toe and wore zinc-based sunscreen under my light-filtering closes.
Perhaps your Principal will work with you and allow you to wear the NOIRS and work in reduced light. When people asked me what the glasses were about, I just told them I was on medicine that made me light sensitive and that pretty much closed the discussion. Light sensitivity varies with each individual, so you might find it intolerable or something you can work around.
Personally I don't think it makes much difference to wait until Christmas break. That is only a 2 week period. The MP is a long-term commitment to years of treatment. Two weeks is a hiccup. What difference does it make if you are light sensitive starting now or in 4 months?
Go to Amy Proal's website to read "patient interviews" about recovery. http://bacteriality.com/
By the way, I have had many improvements since last year and my annual check up shows that my lymph node swelling is largely resolved. Only one area, where they removed the lymph node for biopsy is still showing enlargement and I have little light sensitivity, although I still cover up religiously and wear NOIRs in bright sun. Everyone is different, but light sensitivity (especially in the beginning) is very common.
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Sarcoidosis lymphopathy (July 08) | 125D53 25D54 Jul08 | Ph1Aug08 Ph2Nov08 Ph1Mar09 ModPh2Aug09 Ph1Sep09 ModPh2Oct09 Ph1Dec0| ModPh2July10| 25D24 (Nov08) 25D25 (Feb09) 25D15 (May09) 25D14 (Dec09) 25D11 (Mar10)
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Leroybrown
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Posted: Tue Sep 29th, 2009 16:39 |
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Hi Tamara,
My dad had sarcoidosis for years and 2 of my cousins did also. Presumably, they would give you prednisone, which makes you gain weight. So no matter what treatment option you choose, your appearance is most likely going to change, either you'll gain lots of weight or you may have to cover up more and wear NOIRS. Not to mention prednisone isn't really a cure, and not to mention how sick sarc. can make you...
Just my 2 cents.
____________________
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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RM
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Posted: Tue Sep 29th, 2009 17:20 |
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Hey Tamara,
Im comming at it from the other side so to speak having taken sarc 30yrs ago and it eventually stopping me from working. Not long started on this treatment, the reducing vit d guides alone enabled me to start phasing back to work.
So I am now working and just started the treatment, I know I am going to be revisited by the pains/symptoms that layed me off work as the treatment attacks pockets of the disease, but I am going to try and palliate them with the guides provided. I can do things now I could not even have considered 2 months ago.
Although everyone is different hopefully with you finding this site early in your disease your reactions wont be as severe, but even if they are there are proceedures to help with that. On the other hand if you hold off your disease will get worse and the main stream treatment with steroids only mask the disease and cause more probelms of their own.
There is some good reading here and its great to have this around you I find. So welcome and I wish you good health.
R
Ps! Have a read at PatrickBurkes progress, I just found it the other day and really found it lifting. http://www.marshallprotocol.com/forum30/12971.html
Last edited on Tue Sep 29th, 2009 17:42 by RM
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Sarcoidosis 30yrs ago/ then-shingles/chronic stress/depression/ibs/hypertension/CFS/Fybromyalgia. 13/07/09 reducing D.09/09/09benicar 40mg/6hr.22/10/09 mino 100mg/48hr.
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Cynthia Schnitz
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Posted: Tue Sep 29th, 2009 18:03 |
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Since covering up well is important if you must go out often, I chose to start in the late fall, and late October was the actual start for me, so that the additional clothing, double layering, cloves, low lying hat, etc. could be comfortable. In summer, my first so far, I reduced my covering to a single layer of dark dense fabric as I couldn't handle more, but this worked well, as my D was already down, and so the effect for me of stopping the D decline was not a problem. There is a company that sells a UV blocking sleeve to put on fluorescent lights, if they are still a problem after you start and take all other steps you can.
http://www.uvprocess.com/product.asp?code=FILTER+++I
I bought the clear sleeves for my kitchen, but after my sensitivity reduced at about 8 months, so not too sure how much they would help someone with a great deal of sensitivity. But they may be the little extra that finally makes things work. Cynthia
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Ph1 10/08 Ph2 12/08 Ph3 6/09 125/25D 47/43 preMP 25D14 12/09 Calcium anomaly(gone?),Spondylitis,early Diverticulosis,early AMD,TypeII Diabetes(?) MyStory
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eClaire
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Posted: Wed Sep 30th, 2009 02:23 |
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No one can predict how you will react, but as noted above, others have been able to continue to work with adjustments.
Aside from seeing about using different lighting in the classroom, you could also wear a large brim hat (in addition to the NoIRs) and unscrew half or more of the florescent light fixtures (not everyone is sensitive to florescent lights and so reducing the amount of light might be all you need). So... unscrew some lights while protecting yourself from the light beaming down into your eyes... would be one suggestion I have to make work more tolerable.
Other suggestions:
If there are windows in your classroom (and you are in only one or two classrooms... if you are in more, depending on the window situation, a creative solution might still be possible), you could purchase black out material and make a project with your students to "paint it" with colored tape--you might also get away with making a mural out of very thick construction paper, using black as a background and applying other colors on top of that to increase the light barrier. You could encourage your students to make a mural of sorts that reflects the lessons of the classroom.
If you don't have a comfortable seat in the classroom and a place to put your feet, you might want that too, an ergonomic chair that allows you to put your head even with your feet for snatches of complete rest here and there might be really welcome between classes or while students are working quietly. If you have to move between classes, there are plenty of very light weight chairs out on the market.
You might want to take down bright, shiny light reflective posters.
Hope these are reasonable ideas that might make it easier for you, Claire
P.S. I started the MP in the winter as well because I thought it would help me get used to the light issues before summer set in. Psychologically, that was a good move for me. Of course, someone else might want to start the first day of summer break, to get the initial hormonal adjustment to Benicar dealt with while not having to work. By the time the school year started, you'd know whether you ought to stay on Benicar alone or were able to add and manage antibiotics (that is, have some experience behind you).
Last edited on Wed Sep 30th, 2009 02:26 by eClaire
____________________
42mo on MP; CFS FMS MCS COPD hypermob. IBS/GERD osteopor.; 125D48 25D<4;
NoIRs during most daylight outings;
Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08 * Ph2.Oct-Nov08 * Ph1.Jan2009 * Olm.alone.Jun10
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Deedee
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Posted: Wed Sep 30th, 2009 02:28 |
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| Be sure to face your desk facing away from the windows. Perhaps you can put a panel behind the desk to help block some of the direct sunlight.
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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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RM
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Posted: Wed Sep 30th, 2009 04:42 |
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| Some good ideas there which I took on board myself. Twisted the fluorescent tubes above my desk so they dont make contact and tilted the blinds on my windows adjacent to my desk. Got myself a desk lamp. Definetly all helps. Last edited on Wed Sep 30th, 2009 04:46 by RM
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Sarcoidosis 30yrs ago/ then-shingles/chronic stress/depression/ibs/hypertension/CFS/Fybromyalgia. 13/07/09 reducing D.09/09/09benicar 40mg/6hr.22/10/09 mino 100mg/48hr.
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busytchr
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Posted: Mon Oct 12th, 2009 21:55 |
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Thank you so much for your feedback. I had the biopsy last week, and yes, it is sarcoidosis. I guess that my dad being 100% scandinavian had something to do with this. I will be seen for lung function, cardio, and eye checks soon. I have lost about 15 pounds in the last 2-3 months in spite of a normal diet. Shortness of breath and chest pain and pressure are constant right now. I occasionally feel a sudden instant of sharp pain through my eyeballs as if poked by a pin. Fortunately, it only lasts a tiny instant then stops. I have been taking fluoxetine (prozac) for a few years. Will I be able to continue this with the MP? I don't think I can make it without them. Insomnia has become tough, and I recently started Ambien, but after a couple of weeks, it doesn't work as well as at the beginning. I know I have to do something. I will talk to my internist about MP soon. Hoping he is open....
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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.
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Deedee
Member
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Posted: Mon Oct 12th, 2009 22:53 |
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Your opportunity to recover is right here.
Last edited on Mon Oct 12th, 2009 22:55 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
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Posted: Tue Oct 13th, 2009 19:54 |
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Will I be able to continue this [prozac] with the MP? I don't think I can make it without them.
The answer is yes. And the light-avoidance might help too, see: http://mpkb.org/doku.php/home:othertreatments:antianxieties
Troubled sleep is common with auto-immune patients, and see http://mpkb.org/doku.php/home:othertreatments:sleepmeds
--Chris
Last edited on Sun Oct 25th, 2009 22:03 by
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sarcoid since 1983 (or much earlier), MP since summer 2004 Chris' story
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Deedee
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Posted: Wed Oct 14th, 2009 00:08 |
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| Benicar reduced my anxiety, made me feel calmer, and helped me sleep deeper. I noticed it within the first week of taking it.
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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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eClaire
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Posted: Wed Oct 14th, 2009 00:35 |
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I noticed the same about Benicar. And then I introduced abx and was thrown into the worst insomnia of my life... something I am still not through nearly three years later  and I've had insomnia issues since birth.
Another reason to start abx only after you have managed to tolerate the increase in symptoms from Benicar (after being able to handle a q4h dosing schedule)....
____________________
42mo on MP; CFS FMS MCS COPD hypermob. IBS/GERD osteopor.; 125D48 25D<4;
NoIRs during most daylight outings;
Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08 * Ph2.Oct-Nov08 * Ph1.Jan2009 * Olm.alone.Jun10
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adktecgen
Member
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Posted: Wed Oct 14th, 2009 00:56 |
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Tamara,
Your diagnosis and situation appear to be very similar to mine. I too have sarc, I'm a teacher, and I cannot avoid the fluorescent lights.
I do have the option of turning out some of the lights in my classroom. There are three rows of lights but I only turn on one row for most of the day. My students are OK with the dimmed light situation and have no problem functioning this way. Perhaps a similar adjustment to your classroom would be beneficial.
I started the MP November 2008 and have been making slow but steady progress ever since. I began phase III on September 1, 2009 and all is going quite smoothly. I believe the key is to avoid rushing through the MP, go at a pace you can tolerate. Much like the old folk story of the turtle and the hare; slow and steady wins the race.
I can tell you that CT scans of my lungs and lymph nodes taken in 2005 provided a pretty grim picture of my future. CT scans from 2009 show much improvement with nearly 90% of the spots on my lungs disappearing and my lymph nodes are now back to normal size. I feel comfortable attributing this positive progress to the MP.
Sincerely,
adktecgen
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Sarcoidosis. Diagnosed 2005. Started MP on 11/3/08. Began Phase 2 on Feb. 24, 2009. Stubborn 25D levels: 15.5 ng. Started Phase 3 on Sept. 1, 2009. Working my way through the last antibiotic combinations. No intolerable IP to report, light sensitivity is
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Robertrr
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Posted: Wed Oct 14th, 2009 21:27 |
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Tamara,
I think everyone reacts differently to the light so you won't totally know until you start the MP. For me, (DX of Sarc similar to yours), I was fine in fluorescent lighting but only if I had NOIRs on (10%s worked out of sun....I needed "at least" 2%s when in the sun for a long time). I was able to work for 3 years while on MP (retired last year....yeah:-)). Around the 12-18 months, I could go w/o the NOIRs inside for a while...although I mostly still used them until about 24 months after which I've never needed/used them "indoors". I still use some kind of glasses outside (either 10% NOIRs or just a regular sunglasses with my perscription). I've always been somewhat sun sensitive, but am no more now than when I was a teenager.
As far as working while doing the MP, I personally felt it kept me sane as otherwise I'd of had little/no social interaction during that initial 12 month phase. I just told folks that I was doing a protocol for my Sarc that would lead to a cure, but that I would be very very sensitive to light for awhile which was why I wore sunglasses inside....no one "seemed" to have issues with it.
Take care,
Robert
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busytchr
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Posted: Thu Oct 15th, 2009 23:03 |
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| Received vit D test result of 22 today. Did not include D 1,25 test. Will I need to get this later? My sarc was identified by biopsy last week. I do not take any steroids and have not begun the MP. My Dr. said that the level of D should be 30, so mine is low according to the accepted range. Does this level suggest something going on in my metabolism because of the sarc? Thank you!
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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.
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Chris
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Posted: Fri Oct 16th, 2009 01:07 |
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Received vit D test result of 22 today. Did not include D 1,25 test. Will I need to get this later? My sarc was identified by biopsy last week.
But it's not necessary to know where the D,125 is in order to start the MP, as the diagnosis of sarcoid is sufficent to know that the MP would help.
Getting a D1,25 test is useful to see where you stand in terms of getting it down. It can be uncomfortable when the benicar and light avoidance brings a high level of D1,25 down.
See: http://mpkb.org/doku.php/home:tests for the full story on testing.
I do not take any steroids and have not begun the MP. My Dr. said that the level of D should be 30, so mine is low according to the accepted range. Does this level suggest something going on in my metabolism because of the sarc?
Not by itself. The level of 22 could be found in healthy folks who just don't have a D-rich diet.
You've got lots to read: http://mpkb.org/doku.php/home:patients
Last edited on Sun Oct 25th, 2009 22:08 by
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sarcoid since 1983 (or much earlier), MP since summer 2004 Chris' story
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Robertrr
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Posted: Fri Oct 16th, 2009 03:24 |
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Hi Tamera,
Actually a "low" reading of vit D 25, is most often seen in TH1 diseases like Sarc. What usually is happening is that one's body is trying to regulate the immune system.....however, your body most likely has too much vit d 1,25 and it is turning off your immune system (by affecting the VDR). So, the disease state causes more of the regular Vit D to be converted to Vit D 1,25 (probably if you'd of tested that, it would have been high) and thus your vit D ,25 would be lower than normal. Sounds backwards but that's the way it works. You'll need to get it much lower (<12) to maximize the effectiveness of the MP treatment. As the Vit D is lowered, your symptons will increase so be sure and go slow. Until it gets to that level, you'll want to periodically check to see what it is (as Chris said, don't worry about the 1,25D as once on the MP it could bounce around a bit.....probaby will drop right after starting benicar).
Happy MP'ing,
Robert
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busytchr
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Posted: Tue Oct 27th, 2009 15:41 |
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Not much luck with doctors thus far. When I showed my pulmonologist the literature on the MP, he said, "Makes sense, but there are no clinical trials". In other words, he will not recommend unless it is standard treatment backed by trials.
This is my question: since obviously this treatment is not accepted by many doctors as yet, HOW can we change that? It seems that we need to lobby for trials. If NIH would back one, I would be the first to sign up.
I am reminded of a similar battle I fought years ago to get my doctor to prescribe Cytomel for hypothyroid. The T4 hormone alone did not suffice, and I still felt terrible. An endocrinologist from Texas wrote a book about using T3 (Cytomel) to supplement. I begged my endocrinologist to script Cytomel, only to get a "No." Then I found a general practitioner who believed in the book and wrote the script for me. Not only did I feel 20 years younger after that, I had relief from many other symptoms that had been ongoing. About two years later, endocrinologists began to prescribe Cytomel on a regular basis because trials had shown its worth.
Perhaps what we need is for Dr. Marshall to write a book on the MP mainly in layman's terms. No question it would be a big seller.
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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.
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