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Bonnie2
Member in Phase 2
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Posted: Fri Aug 19th, 2005 22:43 |
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blessings,had echo done today,technician knew someone newly diagnosed w/sarc.so naturally gave her mp sight.When I got home I started having racing heart while resting on couch watching t.v. chest not tight like last time but left armache w/sweat only in left palm/weird.Lasted 7min.s,heart rate has resumed to one of state of rest but arm still little achy.Dr. is unavailable to see for results untill mon.29th aug.,but was told could call in mornings to see if any cancellations after tues.,when echo reading should be done,we shall see.The clothes I wear out were recommended by p.bear made by company/solumbra,very lightweight feels like japanese silk but protects skin,have gotten whole outfit incuding mask hat shirt pants,but had no socks,use theketo.2% cream on ankles w/black converse shoes.Has any one else had exp./w/this brand of medical sunblocking clothes,gloves to forgot,as I still feel bad after going to appt.s w/ using them.also wanted staff to know that I have decided not nto let fear get in way of mp,and took my 1st mino.25mg dose at noon today,so hear I go.....my older sister got on my case and couldnt refuse her never could.thanx4yr wrk 2bonnie
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Sarcoid97 diabetic anxiety wtloss bad pain| O2 2L sleep beni40mgQ6H June05| NoIR avoid light&D| avinza percoset quinine magnes ambien| 1,25d-133.3/25D-16.9/tested aug16/05 orig #25-33.7 1,25-49.5/ taken3/05/ fibromayalgia cardiac herx
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Aussie Barb
Member in Phase 3
| Joined: | Thu Jul 22nd, 2004 |
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Posted: Sat Aug 20th, 2005 00:01 |
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Bonnie
welcome to Full Protocol Forum and thank you for posting..
The First and Constant Guide to the Marshall Protocol is the Phase One Doc.. Please check all precautions / instructions.. some have it printed to check with regularly. and it is important to follow it exactly as written for Safety and Efficacy of the treatment.
The aim is to achieve tolerable herxing by adjustment of meds dosing and schedule while diligently avoiding Light and vitamin D..
as previously suggested, "If your Dr is agreeable, beginning the mino 25mg frequently, - ie Q12H (every 12 hours) as suggested is to manage the rate of herxing to slower.. This dosing schedule although seeming counter-intuitive may dampen the Herxheimer reaction because the dose of mino is maintained at the less effective (ie. higher) level. Minocycline elicits the maximum Herxheimer response as its tissue concentration decays away to zero. this FAQ explains Why do we take minocycline only every other day? Why do I feel worse on the second day? "
as you assess your herxing, you may find that you can extend the mino dosing out to Daily and then to QOD (every other day)
let us know if you have any questions.. Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Bonnie2
Member in Phase 2
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Posted: Sat Aug 20th, 2005 03:27 |
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| I am having 3rd cardiac herx today,never this many before,dr. suggested go to emergency but unsure how to treat didnt know if I should post this on urgent,which anti-inflammatory drugs should I tell dr. safe to give me?I read on one of sights that dr.trevor recommended only certain ones please respond asap.2bonnie
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Sarcoid97 diabetic anxiety wtloss bad pain| O2 2L sleep beni40mgQ6H June05| NoIR avoid light&D| avinza percoset quinine magnes ambien| 1,25d-133.3/25D-16.9/tested aug16/05 orig #25-33.7 1,25-49.5/ taken3/05/ fibromayalgia cardiac herx
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Aussie Barb
Member in Phase 3
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Posted: Sat Aug 20th, 2005 03:57 |
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Bonnie
Have you increased you Benicar to 40mg every 4 hours... and how long is it since you took your mino 25mg..
as per FAQ What is a cardiac Herx? When should I be concerned? says in part >>
If you think you are having a cardiac Herx reaction, please advise your doctor to call Trevor Marshall if he is unfamiliar with treating cardiac arrhythmias or CHF due to Th1 inflammation and in particular the Herxheimer reaction. These arrhythmias do not respond well to the usual anti-arrhythmic medications. The inflammation needs to be reduced with a strong anti-inflammatory blockade. Increasing Benicar to 40mg every four hours usually provides some relief of cardiac Herxheimer reactions. If you have any of the severe symptoms listed above and they do not improve by increasing your Benicar and stopping your antibiotic, seek medical assistance asap.
If stopping antibiotics does not reduce the Herxheimer reaction you can also alter your antibiotic dose and schedule to dampen the Herxhiemer reaction. Specific instructions can be found in My Herxheimer reaction is too strong. What should I do?<<<<
Do you have anti anxiety meds which may also help.. Follow your instincts and seek help if you think you need it. And if you are worried, ask someone to stay with you and/or drive you to the doctor.
Barb ..
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Bonnie2
Member in Phase 2
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Posted: Mon Aug 22nd, 2005 03:51 |
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| 2nd day on mino,feel bad,real bad,have upted on benicar to every 4hrs,will take mino everyday.cardiac herx unapparent today which is great relief to me/family,got scary last couple days.but today am kicking hell out of bugs,I know because they are kicking back even more,little s.o.b.s,feel soooo bad,headpounding,muscles,hard as rocks,joint swelling,little water retention,nausia/vomiting,so drinking plenty fluids,kidney discomfort,eyes really sensitive to light right now even having to wear outside noirs to look at laptop screen,sinuses running,lots of phlegm but breathing unusually clear today,thank heavens,dont think I could handle many more symptoms oh forgot...major depression..been crying all day,but ok p.bear says will releave stress so that I dont mind.I not better bodywise tommorrow will try upping mino. also so that I will be at beni/4hrs...mino25/12hrs,see if feel better,blessings to all 2bonnie
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Sarcoid97 diabetic anxiety wtloss bad pain| O2 2L sleep beni40mgQ6H June05| NoIR avoid light&D| avinza percoset quinine magnes ambien| 1,25d-133.3/25D-16.9/tested aug16/05 orig #25-33.7 1,25-49.5/ taken3/05/ fibromayalgia cardiac herx
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Bonnie2
Member in Phase 2
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Posted: Mon Aug 22nd, 2005 04:25 |
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sorry for those who are unclear about my current dosing.began mino25/beni40,,,no mino on sat,today on mno,beni/every 4hrs....,but no real relief so will tka mino. again torrow,,,,if still not better will mino/12hrs....am just happy no cardiac activity....hope thie clears it up 2bonnie signing off till tommorrow blessings of health to all......night all
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Sarcoid97 diabetic anxiety wtloss bad pain| O2 2L sleep beni40mgQ6H June05| NoIR avoid light&D| avinza percoset quinine magnes ambien| 1,25d-133.3/25D-16.9/tested aug16/05 orig #25-33.7 1,25-49.5/ taken3/05/ fibromayalgia cardiac herx
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Bonnie2
Member in Phase 2
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Posted: Tue Aug 23rd, 2005 05:55 |
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| boy,upping mino to every 24hrs/beni to every 4hrs has made night/day difference,but very fatigued stii,seems can't get enough sleep.vomited only once today so feel better that way to.I seem to have more phlegm today,didnt think I could,it's amazing how much,keep wondering why ZI'm not drowning,but really is blessing in diguise,as many yrs had dry cough from sarco.muscle pain not as bad,but Ifear I am becoming constipated so am using a mixture my sister used when on chemo,works well...1/2 cup applesauce 2tbls. bran,1/4 cup prune juice.also used suppositories to get it going,its helping little by little,also ralize dont have much bowel movement as have had more liquida than food.am having problem also keepingwarm,even though its 100 outside.I am wondering how long should I stay at this regime,not quite sure advice would be appreciated,I understand the no pain no gain thing,so want to get back to herxing when it's safe to kill more of those boogers....2bonnie
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Sarcoid97 diabetic anxiety wtloss bad pain| O2 2L sleep beni40mgQ6H June05| NoIR avoid light&D| avinza percoset quinine magnes ambien| 1,25d-133.3/25D-16.9/tested aug16/05 orig #25-33.7 1,25-49.5/ taken3/05/ fibromayalgia cardiac herx
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Aussie Barb
Member in Phase 3
| Joined: | Thu Jul 22nd, 2004 |
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Posted: Tue Aug 23rd, 2005 06:03 |
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Bonnie
Thank you for posting.. The aim is to achieve tolerable herxing by adjustment of meds dosing and schedule while diligently avoiding Light and vitamin D..
Whilever you are herxing you are killing bacteria. and there is a need to keep your herxing tolerable by the frequent mino 25mg dosing.. At this point you are saying that daily mino 25mg is causing tolerable herxing for you. Is that correct.. until there is enough decrease in the herx to be able to extend it.. Daily mino 25mg is the schedule to stay at.
Thanks, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Bonnie2
Member in Phase 2
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Posted: Tue Aug 23rd, 2005 06:21 |
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I understand,is it the same for the beni/going back to every 6hrs?,I know or I understand beni has to do with controlling the herx symptoms so I assume that I should go back to every 6hrs when I go back to every 24hrs on themino,yes I am herxing ,not as mild w/beni only like I started but not as w/mino-beni together,kind of in the middle,dont feel like crying today I'll give it a day or four does that sound about right,,is there a way I will know when to resume more aggressive regime,would that be the day when I stop herxing symptoms?..2bonnie...sorry in third line I meant "when I go back to every 48hrs on mino"
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Sarcoid97 diabetic anxiety wtloss bad pain| O2 2L sleep beni40mgQ6H June05| NoIR avoid light&D| avinza percoset quinine magnes ambien| 1,25d-133.3/25D-16.9/tested aug16/05 orig #25-33.7 1,25-49.5/ taken3/05/ fibromayalgia cardiac herx
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Aussie Barb
Member in Phase 3
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Posted: Tue Aug 23rd, 2005 06:29 |
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Bonnie
When you are controlling herx.. we do not have a set schedule ahead of time. It is a day by day thing..
you will know when you are able to extend the benicar to Q6H and still be ok..
and then you will know when you feel that you are comfortable enough to tolerate a little more herxing, and be able to extend the mino 25mg dosing out a little further time..
doing any of this too fast can slow you down, so there is no hurry.. tolerable herxing is all that is required, and achieving it is the key to the management of the MP.
Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Bonnie2
Member in Phase 2
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Posted: Wed Aug 24th, 2005 00:07 |
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| feel way,way better today.just irritable,short tempered.got nauseated but kept it down.aches much better,will take advice and stay with the regime I am on now of25mgmino/24hrs...40mgbeni/every 4hrs.herxing mildly,nice for a change,my body needs a break,am getting cave depression so am going out to get some needed shopping done after 830pmthats about it,actually been watching food network to get new ideas on low carb/organic recipe ideas.later 2bonnie,feel better everyone
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Sarcoid97 diabetic anxiety wtloss bad pain| O2 2L sleep beni40mgQ6H June05| NoIR avoid light&D| avinza percoset quinine magnes ambien| 1,25d-133.3/25D-16.9/tested aug16/05 orig #25-33.7 1,25-49.5/ taken3/05/ fibromayalgia cardiac herx
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Bonnie2
Member in Phase 2
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Posted: Fri Aug 26th, 2005 00:47 |
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| decided I was feeling to good,so started back to beni/6hrs,still mino,25/24hrs.Cardiac herx still unapparant,am stiffening up in muscles,but I expect that,I am feeling brain herx,for first time am feeling the teeth/gum ache I have been reading about,but mostly in back area twards jaw joint,makes ears pop/feel like infected but of course I know thwere not,sinus pressure under eyes/puffy.No vomiting today so far,well thats it,will stick to thie regime for while till feel better.....blessings all...2bonnie
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Sarcoid97 diabetic anxiety wtloss bad pain| O2 2L sleep beni40mgQ6H June05| NoIR avoid light&D| avinza percoset quinine magnes ambien| 1,25d-133.3/25D-16.9/tested aug16/05 orig #25-33.7 1,25-49.5/ taken3/05/ fibromayalgia cardiac herx
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Bonnie2
Member in Phase 2
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Posted: Sat Aug 27th, 2005 04:55 |
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| cardiac herx still unapparent,feel ravenous today,am trying not to eat everthing in frig.have moderate renal discomfort,swelling in hands ankles,runny nose,frequent urination.dr. appt. on mon.,29th to find out echocardiagrm results.think if dr. says ok will go back to mino25 every 48hrs,see if cardiac resumes or not,even tho feel optimistic just cant seem to shake this feeling of dark cloud,sleeping lots...2bonnie...out
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Sarcoid97 diabetic anxiety wtloss bad pain| O2 2L sleep beni40mgQ6H June05| NoIR avoid light&D| avinza percoset quinine magnes ambien| 1,25d-133.3/25D-16.9/tested aug16/05 orig #25-33.7 1,25-49.5/ taken3/05/ fibromayalgia cardiac herx
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Foundation Staff.
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Posted: Sat Aug 27th, 2005 05:18 |
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2bonnie,
It's a good idea to make sure you have the Herxing at tolerable levels when you know you wil have to unavoidably be outdoors in daytime, as with your doctor's appointment on Monday.
Plan to take all precautions when you go outdoors because the Herx can be more intense after exposure to light.
Good luck,
Belinda
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Bonnie2
Member in Phase 2
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Posted: Sun Aug 28th, 2005 08:14 |
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| thanx I have kinda got the hang of how I usually feel after dr.s appt/how long out so I will be discussing going back to the mino25/48hrs but will wait at least 3-4 days before I do,barney sent me great idea on how to space out the beni during times of bad herxing but still getting same amount that is a more efficient way to get good nights sleep w/o interuptions when feeling really bad,still same today as yesterday,no cardiac herxing,as matter of fact air quality here was real bad today/didnt bother me ..2bonnie
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Sarcoid97 diabetic anxiety wtloss bad pain| O2 2L sleep beni40mgQ6H June05| NoIR avoid light&D| avinza percoset quinine magnes ambien| 1,25d-133.3/25D-16.9/tested aug16/05 orig #25-33.7 1,25-49.5/ taken3/05/ fibromayalgia cardiac herx
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Bonnie2
Member in Phase 2
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Posted: Tue Aug 30th, 2005 02:59 |
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| well went to dr.,the cardialogy dept hadnt faxed results so dr. will call me tommorrow w/results....but have bad news besides,seems the lymph nodes on the aorta between heart/kidneys are enlarged to 1mm each,and I have pnuemonia,one thing after another so he wants me to stop mp untill he can confirm on x-ray,I don't know how much more I can take thanx 4 all your help,I will stay logged in,but wont be as active on my progress reports,dont really feel I'm progressing at this point...blessings to all 2bonnie
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Sarcoid97 diabetic anxiety wtloss bad pain| O2 2L sleep beni40mgQ6H June05| NoIR avoid light&D| avinza percoset quinine magnes ambien| 1,25d-133.3/25D-16.9/tested aug16/05 orig #25-33.7 1,25-49.5/ taken3/05/ fibromayalgia cardiac herx
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Foundation Staff
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Posted: Tue Aug 30th, 2005 04:18 |
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Bonnie
Before you make any decisions, please read the following FAQ and the links within it:
My doctor thinks I have an upper respiratory infection. What should I do?
(Sinus infection, cold, flu, pneumonia, bronchitis)
Best,
Meg
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Bonnie2
Member in Phase 2
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Posted: Tue Aug 30th, 2005 06:44 |
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| I appreciate the faqs to look at but my ankles are swollen,fingers my pulse oxy is 88,on room air,usually it is 93-94,and my dr. said he heard whaqt seemed to be diminished lung capacities so I think sinu cold and flue can be ruled out.the xrays will confirm tommorrow also I meant to sa the nodes are cm,not mm I dont think you all understand the hopes I had as far as themp went,it seems that I am just getting worse and I could handle it if the things going wrong werent so,dare I say Life Threatening.I have always considered myself a mental strong woman,NO FEAR,but right now my plate is full,abundantthe stress is breaking me.I want to live damn it I have things I want to do,and I'm sorry for getting emotional sand I understand that dr.s read these progress so if you need to erase this entry go right ahead but I think that dr.s especially need to feel the humanity side of this dignity raping disease to...I shall remain forever bonnie
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Sarcoid97 diabetic anxiety wtloss bad pain| O2 2L sleep beni40mgQ6H June05| NoIR avoid light&D| avinza percoset quinine magnes ambien| 1,25d-133.3/25D-16.9/tested aug16/05 orig #25-33.7 1,25-49.5/ taken3/05/ fibromayalgia cardiac herx
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Dr Trevor Marshall
Foundation Staff
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Posted: Tue Aug 30th, 2005 10:50 |
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Bonnie,
I am sorry that so much pressure is being thrown on your shoulders, and I am writing to apologize for us not being able to help very much.
Truth is, your physician(s) are licensed to be the final arbiters of your health care. They are presumed to be in the best position to evaluate your overall health, and we cannot (by law) second-guess them.
Unfortunately, especially when you are dealing with specialists, they may be focusing only on a very small part of the whole picture, and ignoring issues which they don't fully comprehend.
At the recent Cleveland Conference a leading pulmonologist called us a "pain in the rear" and there are others who would prefer to see the Cure disappear, and allow them to resume 'business as usual.'
Consequently a lot of responsibility is thrown back onto the shoulders of patients, onto those least able to handle the pressure.
We will do the best we can to help you understand the issues, but please understand that none of us can 'second-guess' the decision of your Doctor(s). Only the patient has the right to do that.
Sincerely
Trevor
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patrickburke
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Posted: Wed Aug 31st, 2005 00:47 |
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Bonnie,
I have sarcoidosis.
I can remember looking out of my office window one day whilst I was preparing mentally for chemotherapy (for what my docs thought was lymphoma). Thinking how bright and wonderful the pealing old green paint on the factory next door looked. And how all I wanted from life was to stand under the beautiful blue sky, in the sun and the breeze, with the birds singing and watch my daughter grow up into a young woman.
My office windows (and my home) are now covered in thick wallpaper. No daylight enters. My chest x-rays are normal and my lung function has increased by 30%. I am sure that I am getting better. I am on phase 2 of the MP.
Keep going Bonnie.
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Sarcoidosis/lungs; Ph1 May05; Ph2 Jun05; Ph3 Dec05; No ABX 2/08; No D tests; covered since 6/04; Noirs off 6/07; Min light avoidance| Pat's Story|
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