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Jim's Blog 11/24/05: My Deep Thanks To You All

This being the eve of Thanksgiving Day here in the States, I can't help but look at all your responses, comments, help, and love as I peruse cpnhelp.org. I want you all to know how deeply thankful I am for this growing community of souls who share their struggle, resources, intelligence and triumphs regarding this illness.

I want to thank you all also for how well new people are welcomed, responded to, dialogued with and helped. I once felt responsible to somehow make sure everyone's questions were taken care of. Now I read postings by new people, and they are already answered far better than I could! I just love this about who we are. I appreciate all of you joining on this list, and some I have even grown to know and love, though I've never met you.

Thank you, Thank you,

Jim 

Wobbling Through Purgatory

Wobbling through Purgatory
Three long years of suffering and it is time to look back. I had always treated my body as if it was immortal. A foolish attitude but probably born of a harsh childhood and my will to survive. So the sudden embrace of disease and disability was quite a shock to me.
It was late spring 2002 and I had just returned from hiking in the desert canyons. Despite the heat, I enjoyed clambering through the palms and almost dried up streams while taking photos. I returned home to an intense work schedule.

I had been working many hours and not eating properly. I was entering menopause and had problems with night sweats and insomnia. Although I was constantly sleep deprived, I was terrified of taking hormone replacement because of all the bad press. Instead, I turned to soy supplementsi that seemed to help a little.
I had constant problems with sinus infectionsi and every spring would come down with bronchitis that would take months to resolve.

Sarah's Illustrated Blog......................

Nov. 17th 2005  -  A New Life for 2006
To start my blog, I thought I would add three pictures, so that people can see I am a real person and not just a figment of someone's imagination.  The first two little black and white ones are the only ones that remain of a horrible period of my life, dating from 1999 until late 2003.  I destroyed all the others.  By the second one, taken a few months before my diagnosis, I was looking particularly ill.  This was when my memory was starting to go but I was convinced I was getting better.  The colour one, me and two recently finished watercolours  was taken today.

 

My story... read only if you have time

My story all began miles up in the air.  I was on my way to Aviano, Italy to visit a friend in the military.  It was Thanksgiving and he had leave due to the holidays so I bought a plane ticket to go out and visit him.  We went all over Italy first Rome, then Florence and everywhere in between.  Italy was great and I was in awe most of the time I was over there.  Florence had the best food I have ever tasted in my life.  My friend and his girlfriend at the time weren’t exactly the greatest hosts in the world, but I had a good time nevertheless.  I came back from Italy and many different horrible things started to happen. 

 

To be fair I should begin to tell that I grew up with a ton of different ailments.  With the doctor’s boiling it down to a, “I don’t know.”  I had scarlet fever when I was really young, I must have had strep throat more than anyone on this planet.  I had strep throat so much that I got immunei to Ceclor and they could no longer administer it to me anymore.  I was born with a heart murmur and saw a pediatric cardiologist for years.  I had migraines that would land my mother and father in the emergency room many a night to await an injection of something or other to knock me out, regardless of the big blue horse pills that I was on for the migraines.  To top it all off I was an over-hyper active child.  The doctor said that all of these things would go away with adolescence and indeed most did.  I continued to get strep throat and every other sort of cold and upper respiratory infection known to man until I had my tonsils removed at age 23. 

My MS treatment Blog

This is my blog about my experience with MSi and the Wheldon/VU treatment regimen.

I am an RN. I have had adult onset asthma since 85 with periodic flares. I get pneumonia every few years and always fight a sinus lung thing all winter. I was diagnosed in '93 with MS, though it had been 2 years since my original illness which was characterized by being extremely ill with a respiratory flu/cold sores ( I HATE cold sores). When I went into bed with that illness I was normal, I came out of the bed spastic and with red sore swollen knees, visual changes and unable to bend anything below the waist. I walked like a stick person on stiff straight legs. Three months before that we had been hiking in Mt Rainier (in shorts, socks and hikers as always- Eddie Bauer fashion forward in the mountains I always say)and I had been covered with bites, as usual.

New to this whole thing....need some encouragement

25 year old single mother diagnosed with CFSi, FM and Hashimoto's.  My CFS and FM are not THAT bad, but noticed I might of had some form of this my whole life... not so sure.  My hormones are more off than anything.  I do have a hard time sleeping and drugs make me feel like dog do-do.  To be honest I am scared to start the antibioticsi and get into the whole "feeling totally horrible" stage.  On a ton of medicine now...B12 injections, NACi, Acetyl L-Carnitine, Juice Plus, Nystatsin, Nitrogylcerine, Armour Thyroid, Progesterone, Estradiol, Testosterone and Flax Seed Oil.  To be honest my doctor is really optimistic about my recovery and has showed me with the switch to INHi has made his patients recovery period move from 9-12 months to 3-6 months, but overall a year of more (I guess you can say) complete healing regardless of how long they have had the disease.  What is the NAC doing for me right now does anybody know?

Addendum to MS is not for Wimps Ch 2

These are symptoms that are ongoing and in view of the bigger picture did not even come to mind earlier today but I see that they are fairly common. I have had ringing in the ear several to many times, the last three fimgers beginning with the middle one, are somewhat to almost totally numb, I have had iritis for 18 years with two lens replacements (both eyes)for steroid-induced cataracts- not systemic steroids. Iritis was not part of the MS picture but I now have a count of 9 prisms (everything is double). That probably was caused by MS and half my hair fell out after onset of MS 10 years ago. Sounds worse than it is but easily dismissed when I think of where I was headed shortly and the fact that now I can walk, turn around, get up from a chair (or even the floor), climb a fence and go a

MS is not for Wimps- Chapter 2

Happiness may be the realization that you don't need a cape to fly (if you are Superman) or that you don't need Avonex to walk (if you have MS). One week before I take up the Flagyli thing for the 13th time. Now that it is not just on faith that I will someday see improvement but can actually expect it makes my heart sing. The hardest part may be behind me. Those are words I never thought I would say. Maybe I will call that neurologist because he may say "Let's do an MRI." Boy, would I like that. I don't think it is a delusion that I walk, talk, and think better than I ever thought I would again during the very dark, dismal days of 2003 and 2004. I only wish I could relieve my friends on these sites of even some of their anxiety and say "LOOK, friends, no hands, no walls, no canes." But we each have to make our own ways.

Jim's Blog 11/12/05

I've pushed this latest Tinidazole pulse to 10 days! Mostly because it was giving me more energy and brain power than I'd had in a while. Thought about staying with it indefinitely, but last 2 days have been less energetic and more deep aching in lower back and other joints. Feels like the build up of toxicity is starting to overweigh the improvements. Besides, I'm at a conference and would like to be able to have a beer by the end of the week! You do know that Tini and Flagyli are a no-no with alcohol? Acts just like Antibuse.

This will also help me sort out what effects I'm getting from NACi. I'm pretty sure the burning feet and skin, especially in the mornings, is due to the NAC. Off the tini it will be clearer. 

My Mini Update

On wk 4 of doxyi/azith protocol.  Neck/hand/arm pain is greatly reduced.  Ankle/foot swelling[L>R] virtually non-existent.  Balance/gait issues continue-L hip flexor> Right.  Frankenstein gait less pronounced.  Abd/trunkal weakness contributes to gait issues.

I had a lower body massage 2 days ago, first since msi dxi where I actually felt my hamstrings relaxing a bit, with resulting increased sensation in my feet!  I have not felt this good in a very long time!

Until next time  :)

Jim's Blog 11/8/05

Just into day 6 of a Tinidazole pulse (my 4th full pulse, probably 10th overall). i'm actually feeling so good on it that I may continue a couple more days: more energy, less brain fog, burning ache in some muscles and joints, but quite tolerable given what I've had before. I actually felt so much energy for a time today that i was almost giddy. Wasn't sure whether it was a neuroi effect, or just that I'm so unfamiliar with having normal energy that it made me feel high!

I had started the amoxicillini a month or so back, and while it made clear how much EBi load I had, I felt I was going downhill over the time I was taking it even though I had worked up to a full dose. The brain fog worsened and I could do little creative thinking or writing. I became obsessive tinkering with the www.cpnhelp.org< site because even in brain fog I could get something working and feel the reward of something concrete, when other projects languished from my pea-soup brain. Also, I was grateful to see and hear others echoing their own stories and feel encouraged to get through this phase. I continue to be hugely grateful for everyone here who has shared their struggles and helped me to feel less alone. Thanks.

So, when I started this tini pulse, I decided to switch to NACi twice a day. I suspect this is some of the burning muscles and joints, but won't know for sure until I stop the tini. But either that switch or the fact that the tini is freeing my mitochondria up from cryptic organisms (or, God knows, some other undetected bug), it's less of a load on my system.

These dips in the road are a problem. Hard to assess from being in the cart. On the one hand, I know how much better I am now than 1 year ago when the walls of the tunnel had closed in on me. On the other hand, each time I've added a layer to the treatment protocol, I feel much worse for a while. The question being, asked from being bumped into the bottom of the cart so to speak, for how long? My wife actually questioned whether I was getting better or not, since she saw me flattened again by the amoxi and, from her perspective, I looked as bad as I had a while back. My energy worker keeps telling me how different my body feels and how much more core-energy I have than I had even a couple months ago. But adding the amoxi flared up a lot of pain, and just when I was feeling able to start exercising again, now I'm waiting for the pain levels to come down.

I don't have any belief that I'll be "what I once was," since it's been so damned long that I've had CFSi/FM/MCS, I really don't know who that would be. But if I have my brain back and some energy and zest for life, and less pain so I can exercise again, I'll be very happy. So far, I'm happy to be on Tinidazole, which is something I'd never expected I would say! I'll check back and let everyone know how long a pulse I end up with.

10 months into treatment

Ten months into treatment with doxyi ,rifampin,and five day pulses of metroi.I started taking N- Acetyl L- cysteine about two weeks ago, took too many the first week. I was taking two 500mg twice a day. (too many things to remember) Had all kinds of new aches and pains . I had harsh back and neck pain and two days with pains in my kidneys. Things seem to have calmed down now but feeling a little nervous about starting it again. I also have been having more ringing in my ears and the sensation of hot flashes in my legs. I have also noticed that I have been feeling more anxiety lately.

thanks for everyones input , it makes this more bearable knowing your not alone.

Chuck

MS is not for wimps

In 1995 on a hot July day the 450 bales of hay had to be unloaded. I had made water bottles for everyine else but, being indestructabe and in a hurry, drank and ate nothing all day. That was Tuesday. By Friday I was dim and fading and my husband took me to the hospital where I was treated for dehydration and kept for 5 days, becoming septic, caused by fire ant bites on my right foot, later to become my "bad leg", blood pressure 70/50. After coming home to recuperate, I developed shingles at the level of six inches above my waist a few days later, was treated for that and lost virtually all feeling from that site down on the right side of my body.

Like most of us stubborn people with this I continued to do what needed to be done, driving to the National Goat Shows in 97, 2000, 2001, 2002 I realized I had to face the fact that I was REALLY tired and not as strong as I had always been. And I had not been in the show ring for a couple of years because I tripped a lot. I went to Chapel Hill and they said "You are too old to have MSi - (I was 55)- You have had a series of small strokes" and put me on a mind-bender called Aggrenox based on the lesions shown by my MRI. My husband, a pediatrician, took me off this horror after a week.

Macrocytic red blood cells (rbc)

Does anyone know of a link between infectionsi and macrocytic red blood cells?  Before my diagnosis a blood test showed that I had much larger than normal red blood cells which is known as macrocytic.  Apparently this is common in people with MSi. I was just wondering if this had anything to do with the monocytes being infected with Cpni.

yguner's antibiotics log

Hi all,

 

July 2004

I started minocycline 100mgx2 and rifadin 300mgx2 a day.The next day i felt my spinal cord was more heated than the rest of my body.On the 15th day i had 38.5 degree fever and flu like sendromes ,i stayed in the bed for 7 days.This was my first herx reaction.I also had popping ear when i open and close my mouth, just like in the airplane landings.For the next three months i havent had anything else besides popping ear and pain in my foot.


november 2004

I had my second herx reaction which was 15 days long with pain in my kidneys and my urine was like transparant jello.I had abdominal pain as severe as in my kidneys.Because my urine was like a jello i kept checking my urine visually in a plastic bottle.Every two or three days the bottom of plastic bottle was getting dark which never happened before i used antibioticsi.


December 2004

I switched to INHi 100mg.x1 rifadin 300mgx2 metronidazol 500mgx2 a day without pulses which clears the infected immunei cells from the body.For the next three months i kept taking this combination without any side effects,i had mild abdominal pain,tingling in my feet and burning sensation of my spinal cord.The bottom of the plastic bottle was dark red after i switch to this combination.



March 2005

I had the hardest herx reaction for 45 days,i lost nearly 20 kg. my brother and mother was worrying about me ,they tought i was going to die.They scared me too then i took cortisone (prednisone) to surpress my immune system which ended my herx reaction the next day.End of march i swithed to the combination of doxyi and rifadin with pulses of metronidazol.


April 2005

I had severe joint pain in my knees and my hips and severe pain in my feet.I also started having swelling in both my legs and feet.


June 2005

Swelling is all gone now but a horrible pain started in my lover spinal cord which sometimes makes me moan.

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