Has anyone found a way to get a handle on the lyme cycle?
It seems either with treatment or without, one thing remains the same.
I'll have a period of extreme and intense symptomatology often relating to the CNS. During these times, things seem completely hopeless.
After this, I emerge as if I am not even sick at all, despte the underlying constant things like fatigue, pain, twitching, brain disconnects, etc, etc, etc.
Is this deception of the cycle a problem for anyone else?
I sometimes feel like I'm crazy to even think I'm sick at all inside good days of the cycle and think I am ready to return to work, but then
Blasted, the bomb hits again.
Is this cycle restricted to spirochete die off or is there more to it, anyone know?
Posted by oxygenbabe (Member # 5831) on :
I really cycle though in shorter periods, and it is a mystery to me. Sunday night I get a good night's sleep, Monday I go for a 2.5 mile walk, and I feel basically okay, I'm irritated that some work I'm doing is not flowing, I then get a ride to go to a poetry reading with a dear old friend, I do notice the auditorium smells a little funky to me (smells like mold to me), its crowded, the poets read, we wait in line to buy books and to get books signed, then we take a cab home. Given lyme, and that by that time its 10 pm this is a "big" day for me, I feel okay, I get into bed to read about 11, I yawn and...
I suddenly feel terrible pain in both jaw joints, unbelievable. I massage them. I'm bewildered. The pain moves into my temples. I sleep poorly. I wake up chilled, feeling flu-ey all over, with pain in my temples that is not really a headache. I feel so icky I can't really work and I lie around most of the day with the temple pain turning into a lymegraine, then I'm nauseous, I'm getting sicker and sicker...
I get in my hyperbaric chamber as it usually cures a headache, almost fall asleep in there, I'm so relaxed...get out...get into bed...read fascinating stories of ayuahasca journeys...go to sleep around 10:30...wake up with a start at 1:50, probably from radiator pipe noise...can't fall back asleep the REST OF THE NIGHT except for a minor dozing off...headache gets vicious...half my day is spent lying around with heating pads for the headache, feeling sick all over...looking out the window at the sun and feeling like a 2.5 mile walk is the last thing I could ever do...
I feel SO sick when I feel sick...everything...my gut, my back, my muscles..I don't understand how some nights I can't sleep and others I can...I had no clue I was overdoing it Monday and can only think it was my eating more raw,fermented cocoa beans which threw my system off the day before, and a mold exposure at the auditorium...I'm very mold sensitive.
It's as if my tipping point is very sneaky, and it can sneak up on me in the most innocuous ways...unbeknownst to me...and then it isn't like normal "sickness"....its like everything goes kaflooey. I will say I think this is more due to an immune system that has been weed-whacked by lyme, so to speak...its not functioning with its normal flexibile resilience...its brittle, it over reacts, it already has too many inflammatory cytokines circulating, it already has too much inflammation in the CNS...so whatever sets it off, sets it off globally.
Posted by painted turtle (Member # 7801) on :
Yes!!!
Thanks for sharing that.
It is EXACTLY what I am talking about.
It makes no sense, and how on earth to reconcile this with myself when I have every good intention, like yesterday, a 45 minute walk, then
SLAM,
massive headache, which I'd avoided for a couple months previous.
This thing is so sneaky and deceptive, it tricks me endlessly.
Trying to see how others come to terms with it, live with it, learn to adjust and maybe even try to predict (although, that's impossible to predict how that gym mold would affect you) in a sense.
Specially given any memory or time problems you/we/I might have on top of it all.
Just want to see how there might be a sense of resolution, or reconciliation with learning how to live like this, not ever knowing what tomorrow will be like, even despite my careful medication management and best intentions.
Posted by stymielymie (Member # 10044) on :
i have narrowed my cycles down to the first symptom. my left eye starts to turn red.
next second i'm on zithro,plaquenil,acyclovir, vfend,doxy take for 7-10 days,just like a cold. the symptoms get worse then better after 3 days then gone at 7.
stop all meds till next cycle.
these are minor cycles within a remission period. my remission period this time has been about 8 months. very little medication.
many people have systemic yeast or fungal infections, from the abx and still have after abx treatment and still feel crappy. try the diflucan or vfend. take for 6-10 weeks without abx but with probiotics.
many people believe probiotics prevents yeast. IT DOESN'T!!!!!!!!!!!!!!!!!!!!!!!!! YEAST IS FROM A SUPERINFECTION OF THE NORMAL FLORA DYING FROM ABX AND YEAST TAKING OVER.
PROBIOTICS HELP BUT DON'T STOP THE YEAST FROM TAKING OVER. YEAST IS A MOLD BUT NOT ALL MOLDS ARE YEAST. MUSHROOMS ARE MOLDS.
believe me this works, and put me over the healing stage DOCDAVE
Posted by stymielymie (Member # 10044) on :
i have narrowed my cycles down to the first symptom. my left eye starts to turn red.
next second i'm on zithro,plaquenil,acyclovir, vfend,doxy take for 7-10 days,just like a cold. the symptoms get worse then better after 3 days then gone at 7.
stop all meds till next cycle.
these are minor cycles within a remission period. my remission period this time has been about 8 months. very little medication.
many people have systemic yeast or fungal infections, from the abx and still have after abx treatment and still feel crappy. try the diflucan or vfend. take for 6-10 weeks without abx but with probiotics.
many people believe probiotics prevents yeast. IT DOESN'T!!!!!!!!!!!!!!!!!!!!!!!!! YEAST IS FROM A SUPERINFECTION OF THE NORMAL FLORA DYING FROM ABX AND YEAST TAKING OVER.
PROBIOTICS HELP BUT DON'T STOP THE YEAST FROM TAKING OVER. YEAST IS A MOLD BUT NOT ALL MOLDS ARE YEAST. MUSHROOMS ARE MOLDS.
believe me this works, and put me over the healing stage DOCDAVE
Posted by djf2005 (Member # 11449) on :
i experience bi polar lyme and co infection sx also.
its just as you describe.
its insane, frustrating, and at time absolutely disheartening.
all i do is pick up and move on. hope you find some relief.
cheers
derek
Posted by dmbfan (Member # 11948) on :
its such a roller coaster ride! today was a down day for me after a good stretch.
It makes me crazy. I go from hopeful to hopeless in a 24 hour period.
What is really hard is that the people around me are even more confused by my cycles than I am.
Whenever I am out, people always out "What happened? What did you do?" It doesn't make sense to them that I could be functional one day and non-functional the next. Heck it doesn't make sense to me!