my chronic lyme seems to cycle, yearly semi-annually whatever. get treatment good for 6 -12 months then it starts all over again. is this the common path for chronic lyme. i do feel stable during my good periods and can do almost anything, but one day it just hits again
Posted by cigi (Member # 6600) on :
I noticed that when my physical symptoms are much, my mental condition is great. When I don't have much emotional/mental, the physical are much. It can change on a dimes notice - or none at all. Two weeks ago I felt well, little pains, here and there, not much arrythmeas...mentally well, 2 weeks later, confusion, disorientation, but not much physical. This is the first time I've had long term IV treatment - I think the lyme came arond 1988 when had epstein barr and no one knew what it was and should have been on treatment long ago.
Cigi
Posted by minoucat (Member # 5175) on :
Doc, things are worse at our house usually starting about November and going through to March. I don't know if the LD actually gets worse, or if it's because of the long, dark, cold winters here that aggravate everything from arthritis to depression.
I will say that on the new protocol of the last yearand general improvements in health and LD, winter was MUCH easier to get through, although it was still a down time.
Posted by docdave130 on :
move down to florida with me. i got instant relief when i moved in december, but its brutal now 95 every day with 80% humidity until probably october, so take your pick
Posted by ArtnSoul (Member # 4561) on :
Don't know if I can explain it properly - but our LLMD says that there is a yearly (bi-yearly) cycle with the lyme as well as a monthly cycle.
I seem to have a worsening of symptoms about twice a year - usually early spring - and in the late fall.
As well as the normal flare of symptoms every month.
Posted by suttles (Member # 5984) on :
Are you on antibiotics with these cycles?
I am new to the treatment. I also read and I am sure you all know that borrelia is a slow growing bacteria.
Could that be part of the long months or could something stress your immune system into letting the creature out. Suttles
Posted by dontlikeliver (Member # 4749) on :
I am usually worse November and March for some reason. Best in May, I think.
Also, starting about every 2.5-3.5 weeks I start running a low-grade temp and have chills, etc toward the end of my monthly cycle and to just the start of the new cycle.........also worse just around full moon
DLL
Posted by Lazarus (Member # 7042) on :
I find it very interesting that you brought this up because I just mentioned this to my doc the other day and it seems to run on the same cycle that you mentioned.
I brought this up even before I was dx with lyme. I am a newly dx and just started on IV rocephren and tindamax. I have been pretty miserable since I started three weeks ago.
I am also in Florida but I still get the cycles. Just curious - what part of Florida?
Lazarus
Posted by docdave130 on :
lazaruz: west palm beach. no i am not on abx when i relapse into a cycle. it does seem to occur around march and september though, i never though about the seasons, but just thinking about the relapses in treatment. i've been treated since 2000 on and off with 2 iv's and lots of orals, presently on zitromax, acyclovir and flagyl and coming to the end of a cycle. the last 28 day herx was the mildest this time around so i guess 2 more months and then back off again and see what happens.llmd says 3 times with rocephin is a stike out since the bacteria are probably immune to it by now, makes sense.feeling ok with orals this time around
Posted by trueblue (Member # 7348) on :
I'm in florida as well, about 30 minutes away from you docdave, and still cycle but overall I feel considerably worse here than I did in NY.
I seem to cycle without ever getting any good days, whether I'm on treatment or not.
(I'm not very good at heat; ice is my friend.)
Posted by Lymelighter (Member # 5310) on :
Yes Doc, on Mon, I have a hydromassage at the Breakers, Tues at The Ocean Grand, Wed at the Ritz, Thurs at BallenIsles, and Friday Mara-lago w/the Donald. Sat & Sunday I charge up 18 holes, a massage & Lobster Salad & Dom lunch at your place. I also cycle in Your Gullwing & SlR Maclaren when I go for obscene spending sprees at City Place & Worthless Ave.
I will say that the cold winter is just dreary for my Lyme. Makes the joints stiffen tighter than my wallet. Hence my need for some FLA respite.
Posted by docdave130 on :
sorry i can't top that, my gullwing is in the shop and my red lotus has to be painted light blue or white so the cops don't see me. my 50' hatterus is fueled up and waiting for you, bring you own bathing suit though ,i only carry bikini's on board, size 2-4. tee time 9:30 at the breakers or 9:00 at my place if you desire.must bring steaks to feed the aligators as you go by, almost like a toll road. think of it as an extension of the turnpike except sunpass doesn't work. well good luck to you and hope you make the tee time
Posted by Lymelighter (Member # 5310) on :
I'm there & I'll bring the Flagyl Salad to accompany the gator steak.
You'll know I'm coming as I had my Ferrari Enzo painted Lyme Green. Fuel up the Hatteras & bring the babes! I'll bring the Nystatin. LOL!
[This message has been edited by Lymelighter (edited 31 May 2005).]
Posted by Lymeonysnicket (Member # 7196) on :
Hello, I see many of you are now Floridians -- Just when I finally found a great LLMD in NJ, I find out we're moving to Boca Raton, FL. Can any of you recommend a good LLMD in FL, or should I count on flying back to NJ for treatment?
Lymeonysnicket, I have one 30 - 40 minutes away. She works and plays well with other doctors. (I've emailed you.)
If there are a few people in this area is there any interest in having a support group? I'm here for 8 years, the closest group is over 5 hours away. Yeah, like that's gonna happen!
[This message has been edited by trueblue (edited 31 May 2005).]