Chronic lyme symptoms

Good morning. I am new to this forum and have been sick every day since October 1992. I have had multiple pic lines, numerous antibiotics, numerous oral antibiotics and I am still sick as hell every day. I wake up 5am every morning. Never had a normal sleep every since getting sick.
Does anyone out there in lyme land have extreme spinal pain in the morning where it takes pain killers and two hours just to be able to put your socks on in the morning?
In addition my gallbladder is bad according to ckk hida scan. I was never on rocephin though and when I first got ill my gallbladder scan was only functioning 15% in 1992. Instead of physical activity helping me my joint just swell with activity including my hands where my wedding ring looks like it should be cut off. Every day is different. One day I can not tolerate any cold or hot drinks on my teeth because of the trigeminal neuralgia. Another day every joint is cracking popping and tendon or ligament insertions are thobbing in one area and then moves to another. I then have days I am so week in my shoulder girdle muscles that I can not hold my arm above my head just to hang a picture nail. I went to NYC on the train to see the tree and I could not keep up walking with my wife and child. I went to Columbia Hospital in NYC a few years back and they said my spect scan reveals chronic inflammation of the blood vessels resulting in hypoperfusion throughout the brain. They said this is consistent with lyme and other conditions and some medications. This is all I can sit now because my spine is killing me. Have to get up and move.
Will post later. Anyone else this sick every day? Not sure if this is post lyme, post viral syndrome or just something else not diagnosed yet.

When I first got sick I was diagnosed with Chrohns disease and was given large doses of iv steroids. That almost killed me. The neurological symptoms got so severe that I wanted to jump out the hospital window. Muscles were twitching in my legs, arms ,face. I had myoclonus even during the day where my leg or arm would jump without any control over it. Instead of the steroids helping me to get better it caused the lyme neurological symptoms to persist to this day. I have ulnar nerve axonal neuropathy. My mid spine joint feels like it gets swollen and irritates the nerve that goes around my chest.

If I don't take a nap in mid afternoon I can not function the rest of the day. It is as if my muscles or nerves run out of energy by mid day. No matter how much magnesium or calcium I take it does not help my strength levels. I am chronically low in B12. I heard this is common in fighting chronic infection. It could also be
due to my gallbladder not functioning properly for digestion.

Post Edited (sick2long) : 1/3/2011 8:51:58 AM (GMT-7)

Thanks for responding to my post. I unfortunately have not a break from this disease ever. Once and a great while I will get one day where migratory pain stop, trigeminal neuralgia eases up, no muscle twitching, ligaments feel stronger, legs stronger, wringing in ears gets less loud and I can not relate it to anything I ate, did. It just happens. It only lasts one day though. I never felt better on iv antibiotics or oral antibiotics like so many people say they do. I wonder some times if there is something else attacking me. I have been to the Mayo clinic in Minnesota. What a waste of time. One thing I have noticed is sometimes when I eat real salty food such as a large ham sandwich I sometimes feel better within two hours of eating it. Maybe it is causing me to retain more water which may hydrate the entire body including the brain. I am not sure but it has happened more than once to me.
My lyme MD has given me a script for an MRI of the thoracic spine. I am going to wait for a day when I really can not bend side to side and that nerve is throbbing on my right side. Maybe it will show some swelling or something in that region.
I take it one day at a time. I miss my work and being productive. I am sick of being Mr. Mom at home.
I miss skiing, can't ride my motorcycle any more-too off balance dizzi.
I still do my vegetable garden but get crippled up but love my fresh tomatoes.

I find that stress can excaccerbate emotions because you can't think clearly but I never find that just relaxing helps this condition.
I have been on a beautiful Island in the Carribbean and also on a cruise ship and missed half the ports of call because I was so sick I just could not go. The headaches when they hit are so severe that I have to double up on my pain med and get in a dark room and sometimes use ice to relieve them.
Enough of my complaining for now. Thanks.

Sick2long,
Don't think of this as complaining...We have no other means to be able to understand where you are physically & cognitively (is that even a word? Hmmmm) if you don't tell us.

The craving of salty foods can mean that your adrenal glands are struggling to keep up with the constant stress your body feels. You should probably be evaluated for this.

I am not on abx treatment either - I did give taking abx a full year, but when I kept getting more ill, I chose to stop. I sat, not doing anything about the tick infections for two years because Hubby's health left so quickly that it

almost took him too. I think that scared me more than being ill ever has. I now use Acupuncture, Chinese Med & Western Herbs and have finally made some progress.

You mentioned what we affectionately call 'brain fog', and although not all of those infected get this, but a large majority of us do. Just think - that makes you "normal" here!! giggle!

You are right about just relaxing doesn't help much with the brain fog & even the possible migraines you mentioned. These could easily be caused from ammonia building in your brain. This is another reason I am so big on detoxing -

it was the only thing that I -or anyone else- had done that could even make a dent in these two things. I know have very few migraines, and the brain fog is staying away a little longer each time.

I would highly suggest that you start detoxing! Although, a few words of caution
- don't use water that is "a little too warm"
- don't stay in a soak for more than 10
minutes to start. Slowly build up to
the full 30 minute soaks.
-be sure to drink at least 2 quarts a
day of fresh water to keep yourself
well hydrated. A lot of us also add
lemon to our water.

- and maybe most important of all -
Don't push your self too much!
Remember,
any is better than none - especially for detoxing, amount of water you can drink in any given day, and exercise right now, but you don't want to send yourself backwards!!

Please feel free to post any more questions or concerns!

Thanks Stacy. When I first got sick my immune system must have been so low because I had so much fungus/candida in my mouth that I am sure that is what caused the severe colitis I had that they thought was crohn's disease. When Dr. B saw me the first thing he did was put me on diflucan which was the first drug that got me off the couch. Antibiotics always made me worse because I think my body is so prone to developing yeast infections. I still take diflucan on and off and it gives me a boost of energy somehow. My lyme Dr. said it does have some lyme killing ability also.
I never had rocephin because my gallbladder was in question when I first got sick. Maybe that is what I need and if the gallbladder has to come out so be it. I will ask my Dr.
Thanks so much

Glenn