shelley's ABX Adventure

Tell us what you are using to treat your MS-- and how you are doing.

shelley's ABX Adventure

Postby mom10789 » Wed Sep 12, 2007 4:14 am

Background
eye doctor, eyr specialist, gp. heart specialist, gp, neor #1(dxd) gp
neor#2, gp, neor#3, gp, neor#4, gp, natural pathic doctor, gp, waiting to see neor#5

DISABILITIES
can not move my legs
can not feel my legs or feet
no use of left arm and -extremely panful
ms 'hug' - extremely painful
upper right are painful
right hand a little numb
head foggy
alot of headavhes
bladder issues
a couple of personal issues

Aug 16-Aug 31 - started doxy 100mg - felt great, more energy,happy , pain managable, not bad could move my legs from the knees down and my ankes and toes

Sept 1- Sept 3 - 6oomg NAC - the pain was unbelievable-stopped this go feeling a little better but extremly tired and foggy

Sept 9 - took 200mg doxy- again pain was unnearable and took away the use of my right arm and hand- went back to 100mg

Sept 10 - feel ok not as good as Aug but not doing bad
when i was having a sponge bath i said 'het Mel can you move the kitten, she is eating my ankle bracelet' we both had a little moment
still foggy and tired but i've been out everyday
and started to take a interest again in everything, my legs no longer ache
and bladder issues gone
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Postby SarahLonglands » Wed Sep 12, 2007 5:27 am

Shelley,I hope lots of people will come along to join you on your adventure! You are very brave doing it this way: I just kept quiet for six months before I wrote anything, anywhere. It will be an excellent resource, though and I will be sure to look very regularly.

Sarah :)
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby mom10789 » Sun Sep 16, 2007 3:37 pm

i'm gonna write every sunday so i keep myself up to date
still kinda disappointed i'm only able to tolerate 100mg of doxy
but my husband likes to remind me how very sick i was 6 weeks ago
so apparently very slow i will be going
pretty tired this week but

sun-could not go camping but actually took an interest in the house and yard and renovations for me this is huge

mon-had one of my old pca come and she thinks i'm doing amazing when she was giving me a sponge bath our little kiten was chewing on my ankle bracelet and i felt it

tues-went to my sons-in-laws baseball game,felt very overwhelmed,too many things going on BUT I DID IT

wed- really tired but went shopping and out

thurs-joe was exhausted so not too much

fri-went to an auction,i bid on things,i won,and i could pay attention
got a little paniced near the end when everyone was moving around but joe kept me calm by keeping me focased on the auctioneer

sat-extremely weepy and arguementative
went to kids and joe's softball tourament
felt really left out but this was my world and talked to alot of people
felt really overwhelmed and panicy at the silent auction-too many people in an enclosed space
but we had people for dinner and i planned the menu and entertained until 10pm
had a good but very furstrating day
my head was not foggy but irirtable


my arm was not too bad
my legs i can move a little more on the bed
more interested and making decisions
shell
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Postby Loriyas » Sun Sep 16, 2007 6:55 pm

Shell
It sounds like a really good week to me. I'm so happy for you. I have found that on the days that I feel really good I become frustrated when I can't do more. I think it is because we so desparately want to be like we used to be and when we have a small taste of that we remember how it was and want it back. I believe that we will get it back, it just takes longer than we would like it to!!! Keep on plugging away-you are doing great!

Lori
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Postby SarahLonglands » Mon Sep 17, 2007 3:53 am

Shell, that sounds like a really good week to me aswell. When the kitten becomes a stately matron you will remember that time you first felt her chewing your ankle bracelet!

Sarah :)
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby mom10789 » Wed Jan 09, 2008 8:50 am

sorry all, it has been monthes since i have written
all was going along fine until nov 1 when i got yet another UTI
the pain was unbelievable, had a high fever and those d... rigor spasms
so my husband took me to the hospital, my gp was on call, he ran some blood tests,urine test, and came back and said everything came back fine,gave me a muscle relax shot and he said he is almost positive there is no way i have any kind of infection because i take mino. so he sends me on my way. i swear that man thinks i'm crazy. three days later the hospital calls to tell me i have a UTI and gives me a rx for macorbid, five days later back to the hospital, the pain is worse, more blood work, the infection is in my kidneys. they hook me up to iv abx, it started with an a, after that they sent me home with an rx for cipro, i know, i know, i know no cipro but i was desperate. three days later i was back at the hospital with severe neck pain. i was watching my ankles, knees and hips but cipro got the tendons in my neck but the infection seemed to be gone so off the cipro. in the meantime i lost all the hard work in my legs, so physio quit until i get the movement back. went to the pain clinic, what a wonerful place that is. he upped my fentanyl-sorry spell - patch, gave me percoset for break thru pain and zanaflex. so i slept most of dec but for the first time in 3 years my pain in my neck and ribs is at a 1-2 insteadof a 8-9. my left arm and hand are still in agony and i'm now starting to lose the use of my right arm and hand i can now breath again
without pain. the week before Christmas i got another infection, my gp insisted it was yeast and gave me a prescription for dulfican, by the 26 everything all broke loose pukin, fever and pain back to the hospital YEP another UTI so another abx in the cipro family not the lev one but it started with a l. my favourite nurse says ' shell you know sex can trigger UTI'S' joe and i both laughed,like that is up there on our to do list. we can't figure it out, everyone is so careful when we change me. my daughter just thinks there is something really wrong down there but because of the MS sticker on my forehead, no one looks harder
oh well 2008, i want more answers then questions
so abx has not worked for me but my body is insane, nothing seems to help me with my ms
i still take mino 100mg x2 a day, it has worked for my mental issues
i no longer have any headaches,i remember my words, i can follow conversations and join in, no more panic attacks, my memory is back
so a big part of my life has returned but physically the ms is winning and i'm still losing and pain is still one of my biggest problem
thanks for reading
shell
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Postby SarahLonglands » Wed Jan 09, 2008 11:45 am

Hi Shell, I was wondering how you were. What a pity you have so much trouble with UTIs. Some people do seem to for no apparent reason. I'm glad the cipro seems to have sorted it out. There is no reason why you shouldn't take it, it maybe doesn't pass the blood brain barrier very well and a chronic infection can become resistant to it, but then a UTI is somewhere else and responds best to a quick fix!

I'm afraid your daughter is all too right in what she says about an MS sticker: its not the cause of everything that goes wrong with you, but it tends to be a convenient excuse for some people.

I think you are wrong is saying abx hasn't worked for you; you are still taking minocycline and you still don't have panic attacks, your memory is back and you join in conversations, or rather, I think you said previously somewhere that you were part of an argumentative family. This is as much part of MS as the motor functions are. Wait until you get back to the physio, see how you are then.

Sarah :)
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
SarahLonglands
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Posts: 2104
Joined: Thu Jun 17, 2004 3:00 pm
Location: Bedfordshire UK


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