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Meg Mangin R.N.
Former Team Member
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Posted: Tue Sep 20th, 2005 06:32 |
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2bonnie,
I'm sorry you had such an upsetting experience with this insensitive doctor. He showed his ignorance of sarcoidosis.
It would be helpful if you were to get a written copy of the echocardiogram report and the doctor's analysis.
Since you know that you have cardiorespiratory inflammation, there is no point in getting an MRI unless you think it would change your mind about how your sarcoidosis is treated. Please see:
What diagnostic tests do I need?
I'm sorry that Medi-Cal won't pay for portable oxygen. That makes it even more difficult for you to get to the doctor. Perhaps your social worker can help you out with this. Hang in there. We're all rooting for you.
Best,
Meg
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Nothing contained in this site is or should be considered, or used as a substitute for, medical advice, diagnosis or treatment by your physician.
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2bonnie
Member
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Posted: Wed Sep 21st, 2005 08:08 |
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| thanx for that megan,youd think the HEADof CARDIOLOGY would know just a wee bit about all types of cardiac diseases,anyway,med i cal will pay for a portable tank but they are the big ones that are for people that can drag them behind them as they walk,the tanks are like 21/2-3ft long,my dr. put on the presiption that I needed one that could mount on a chair/or onr that is the little ones most people you see use.So I have it just cant use it.so my neighborhood night walks are out,the one thing that helped release most of my stress,I live in a smi rural are so stars are bright,anyway,I need to talk about a personal problem that I only mentioned to staff before but I have decided not to hold in anything inside anymore that has to do w/symptoms tho may seem very personal to me,there may be other women who are experiencing what I am and need to know others are too.So,I am having vaginal herxing,it started out when the body odor was happenining,It 1st appeared as a vaginal discharge,my gyn assured me it was no infections ect.,I am celebate 5yrs now,another member had the same problem,well the discharge is gone,now there is a pressure kind of painso called my gyn asked if maybe she might have noticed some lowering of the upper wall when she examined meas I have had hysterectomy in 95,and then lost few feet of intestine/part of colon in 96,had colostomyfor a year as intestines were swollen and ripped,this is 4 monthe before they diagnosed me with sarc.telling me that I had irritable bowel blah blah,but it is becoming very painful sitting,feels like bad menstra when everything is swollen....also have been having clitorial swelling,is or has anyone else incuding that other member I talked to had this experience to?It feels as tho I am on my menstra all the time,going on now about a month pressure getting worse,any suggestions on relieving the swelling as lowering mino/beniar doesnt seem to effect this area as w/lungs,jointsect. thanx2bonnie
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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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Belinda
Former Team Member
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Posted: Thu Sep 22nd, 2005 00:25 |
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Bonnie,
If you are strong enough, you may be able to walk with the tanks you have. Didn't they provide you with a cart (with wheels) for the cylinder? I used to walk the length of my block pulling my oxygen tank. I am hoping you will get a smaller tank, but that may mean a change in oxygen providers. Not all medical oxygen providers carry liquid oxygen, which is carried in smaller personal units.
You may find that using a probiotic will help with lower abdominal or vaginal problems you might encounter. Have you read What kind of probiotics should I use? The feeling of swelling would be consistent with a Herx if there is no other explanation.
BelindaLast edited on Thu Sep 22nd, 2005 00:34 by Belinda
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19470 |
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Posted: Thu Sep 22nd, 2005 00:40 |
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Bonnie
Some find they are better to take the probiotics twice a day or as required... they can feel the pressure coming back when more is required. and if that isnt enough ..... see >
and although it is early in the MP for you, you may wish to try the Quercetin to see if it helps.. see info in the FAQ and the link within How often should I take Quercetin?
Another thing is to reassess the dosing and schedule you are at with your mino.... is it time to make some changes forward from there.
let us know how you go with it... Thanks, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| MP Aug04| ABC of MP
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Meg Mangin R.N.
Former Team Member
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Posted: Thu Sep 22nd, 2005 01:34 |
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Bonnie,
My fragile patients on oxygen are not able to carry the small oxygen tanks without an increase in their dyspnea. Although awkward, they manage better with the portable tanks on wheels.
If you've noticed urogynecological tissue changes that may be structural in nature, you should have a thorough exam. A knowledgeable doctor will be able to tell you your treatment options. Th1 inflammation can cause benign drainage and swelling. This will resolve with the MP. Ask your doctor about palliative measures for the intolerable symptoms.
Best,
Meg
____________________
Nothing contained in this site is or should be considered, or used as a substitute for, medical advice, diagnosis or treatment by your physician.
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2bonnie
Member
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Posted: Sat Sep 24th, 2005 00:50 |
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thanx for all the responses,my gyn says my vaginal walls are strong and that no weakness enough for surgury to fix it is apparent,rectalexam did shw swollen colon entrance,so my colon is probable like it was when it ripped and I ended up w/colostomy,diet is getting strictor,more fluids,so am using blender drinks more as meal foods,Dr. is working hard to get medical to pay for a mount for my wheelchair,it is obviousI cant be independent w/o it.Also the guy that works at the oxy place is oooooold school bud,told him to refer medical to the updated sight for sarc.....,sarcinfo.com that explains that the other sites are obsolite,only can k\hpoe that helps w/ NIH in the way,am also looking at url that belinda gave me that may help in finding other company to get oxy from who will put attachment to hold onto my chair.Also have decided to go back to mino 25mg/everyday untill all these problems settle down/o2 sat.comes up,stabilizes,just guess will have to take this real slow like you all have been telling me no rush,anyway at least I know that with the swelling /herxing I am giving them a good fight am doing beni 40mg/4aday thanx all love ya many blessings
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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
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19470 |
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Posted: Sun Sep 25th, 2005 06:18 |
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Dear Bonnie,
I see that you had gone off the daily mino to QOD... Daily should be better and you can stay at that for as long as it takes..
it is best to be cautious re your symptoms and dosing ... you may check if you are needing any help in deciding.. we are very happy to assist you in any way we can..
all best, Barb ....
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| MP Aug04| ABC of MP
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2bonnie
Member
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Posted: Sun Sep 25th, 2005 06:39 |
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today unfortunately I feel as tho I should be writing my epitath. yesterday my husband went out of town and on way home found a nbar-b-que place,so he brought me all my favorites(vegitarian)greens,salad,greenbeanswith potatoes,sweet potatoe pie...........and my favorite.,fried okra,well I ate the okra,not really tasting anything bad,cornmeal,spices....but 3am I woke up sssooooooooo sick,I asked my husband I feel like I need to go hosp.,vomiting weak ect....well It dawned on me he said it was a louisiana bbq,oh hell,I said honey did they have catfish or red snapper there?yes on both,then it hit me,the 2 orders of okra was cooked in the same oil as the fish,well today I am dead,officially,guts hurt,backside,frontside,everyside,whatever youall do if you like okra &bbq make sure that its not cooked in grease w/fish.so I have never felt like this in my life,poisoned,baaaaaaaaaad,I am going back to sleep,and consipation baaaaaad,lord help me,I must have a vitamin d overdose bigtime,I will be offline a few days,so P.bear call me if u need to,my cell phone got wet but the landline is working
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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
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19470 |
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Posted: Sun Sep 25th, 2005 06:51 |
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Bonnie
You may wish to try taking your Benicar 40mg at Q4H or the equal of 20mg (half tablet) @ Q2H to see if it will help you to get thru this better..
Barb ....
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| MP Aug04| ABC of MP
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2bonnie
Member
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Posted: Mon Sep 26th, 2005 05:29 |
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| hello all,drinkin lots water today,stayed in bed too.we have medical marijuana here in calif.nothing like it when injested for any stomach,intestinal thing,plus your medicated enough to skip that day if need be when in pain.Just found out that I can have milk thistle,tea to help with de-tox cleansing,I will encorporate the M.T.into my other herbal tea,has helped tremendousely,another +is being in bed so long,my lungs feel like they close,get phlegm and drinking the cannabis tea helps to bring it up naturally when injested also,inhailing isnt an option so I larned it's expectorant properties also work by injesting.Boy I dont think I'm ever going to eat another piece of fish again,okra,I will eat all day long,but the fish oil killed me so those who get cooked food outside the home beware!,I didnt taste fish on the okra so ....,I'm doin 25mgmino/24.......40benimg/4day
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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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2bonnie
Member
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Posted: Wed Sep 28th, 2005 22:39 |
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| did the beni20mg/2hrs,feel lots better,thanxs lots barb.have major weakness in all body,dont want to be on this computer,but must keep up.not eating,afraid,just want liquids,water,diet 7uplittle,sweet makes me sick as h---,well there anyway.whole body is fevered,all joints swollen today,havent had that in months so not used to the pain of the swelling I used to have everyday,I thank trevor that now the swelling is only last time was before started mp!!!!anyway Im out of here,been reading the new political comedians book.....NEW RULES,by Bill Mayer,very funny.so I really want to be alone so bye,blessings,just gotts ta ride it out,back in few days.....2bonniep.s P.bear if someone needs me give them my phone as I dont think ill be back for awhile k,thanx 2bonnie,hope you all wellness
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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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2bonnie
Member
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Posted: Mon Oct 3rd, 2005 20:19 |
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| hello,feel baaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaad.dont know what to do just want to diiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiie,losing lots weight this last week,4lbs,really think that other things may be going on,but dont know.I dont know what to do.my stupid roomate almost killed me yesterday,didnt check on me till 7:30 pm,my oxygen was wrapped around my neck,not in my nose,he said it took him 15min. to wake me up,I still have bad headache from that,please can you see if I am still alive at least before the sun goes down on the next day,duh.doin badfeel dead,later,dont want anymore advise or anything cuz nothin works,i will write again ,i dont when
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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
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19470 |
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Posted: Mon Oct 3rd, 2005 22:49 |
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Bonnie, P Bear, anyone who has Bonnies contact number,
Do you mind/ can you please contact me by private message as we would like to make contact with you or your room mate to see how we may assist you....
Thanks, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| MP Aug04| ABC of MP
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19470 |
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Online
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Posted: Tue Oct 4th, 2005 00:49 |
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Bonnie, P Bear, anyone who has Bonnies contact number,
Do you mind/ can you please contact me by private message as we would like to make contact with you or your room mate to see how we may assist you....
Thanks, Barb ...
ADD: contact has been made thank you all..
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| MP Aug04| ABC of MP
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P.Bear R.N.
Research Team
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Posted: Mon Oct 10th, 2005 04:02 |
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| Bonnie asked me to post that she is controlling herx well now with Mino q12 hrs and benicar q6. She has had success with taping her oxygen on at night. With herx in control she is less short of breath and does not always need o2 in the daytime. She mentioned that she ran into the pulmonologist in the hallway at hospital who used to "treat" her with 80 mg of prednisone. She showed him her ankles and he was amazed that he could see her tendons now. She was pleased to inform him that she could now walk short distances since beginning the Marshall Protocol. best, P.B.
____________________
Nothing contained in this site is or should be considered, or used as a substitute for, medical advice, diagnosis or treatment by your physician.
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2bonnie
Member
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Posted: Thu Oct 13th, 2005 06:23 |
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hello all ,as p.b reported my herxing is soooooooooo much better.in fact barely herxing at allI amm getting a rash on my buttocks,havent found a cream yet that will alleviate it,have been trying anti fungal,thought maybe it could be from all the mino,guess not,really weird cuz it does remind me of the bad rash I used to get when I was younger,like 1st grade till I was teenager,I got it behind my knees,elbows,dr.says its exima,but is not responding to th e creams,anyone got idea,seems all I do is scratch my behind all the time now,is also on top of my left footand around my right ankle.am gaining weight cuz can ear w/o emesis,colon pain.thats it haveing great depression so if dont write in a while I am ok just need space sometimes,I talk to p.bear when I dont write
"eat w/o emesis",colon pain gone
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
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19470 |
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Posted: Thu Oct 13th, 2005 08:47 |
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Bonnie
Thank you for posting. The aim is to achieve tolerable herxing (physical, mental, and emotional) by adjustment of meds dosing and schedule while diligently avoiding Light and vitamin D.. when you feel completely stable in all ways at each schedule level, you may wish to try to extend the schedule out and stay at that level till stable again.. etc..
When you are stable at mino 25mg Q12H, you may like to go to mino 25mg Daily if / when it suits you.. If you have any trouble at all, just go back to the previous schedule of Q12H..
for the rash see also I've developed a rash. What should I do?
let us know if you have any questions. take care, Barb ....
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| MP Aug04| ABC of MP
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2bonnie
Member
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Posted: Sat Oct 15th, 2005 06:28 |
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doing fine still losing weight,all is fine,thanx for the site on the rash thing,but dealing w/intestinal stuff again,but mildy,thank goodness.will get back soo nblessings,forgot.....am running low grade fever...100.3...bye talk soon
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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2bonnie
Member
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Posted: Tue Oct 18th, 2005 02:53 |
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I have one thing to say,thank the goddess for the mp and trevor marshall,yeah the last months have been hell,and for a minute there I thought it wouldnt work for me but 2wks ago my o2 on room air was 84,today it was back in the 90's,91 as a matter ,P.bear must have thought me crazy when I called him crying I was so happy.I made him guess what he thought my # was,HE SAID 88,WHEN i SAID 91,91 ON ROOM AIR HE WAS HAPPY TO.THATS ALL i GOTTA SAY 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
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19470 |
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Online
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Posted: Tue Oct 18th, 2005 03:15 |
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Bonnie
Thank you for posting.. you are doing some hard work here.. I am pleased you can see results..
good to know from your PM that you are staying at the frequent mino schedule to keep all tolerable and working best for you..
Thank you to PB for assistance and all good support..
Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| MP Aug04| ABC of MP
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