after effects...??

[lucida]

thanks

its a great site Ive been watching for while
Its inteersting to see the similarities in peoples exeperiece. personally i would avoid an epidural for me as its just too traumatic but needs must eh


good luck with your trip

[jrnyc]

it is a great site! people sharing experiences, information, compassion and understanding!

i do not know what to do about getting another epidural.. i'll see what my pain doc says on Aug 30th...this muscle spasm thing was such a surprise...

thanks for the kind wishes...i hope i make it out to the west coast in September...right now i'm having trouble walking...was in Manhattan today (3 hours each way by train for me) and it was pathetic! i was walking hunched over in pain...it was raining, too..not good for arthritis!

but it could be worse...at least i made it there and back in one piece!

again, welcome...
jess

[rohrer01]

hey rohr
i wanted to let you know to watch out for a Jarish Herxheimer...not kidding...it is a reaction to antibiotics that you only get with spyrochete caused illnesses...what it means is that your symptoms get 100 times worse before they get better...to the point where you may think you are having an allergic reaction to the antibiotics you are being given, or are worsening and the meds arent working...if you get much worse the day or a few days after you start the meds, it is a good thing! it means they are working!!
it means you are having a "herxheimer," which is good!!!

i would suggest you buy a book on Lyme..classic is "Coping with Lyme Disease," by Denise Lang..now in 2nd or 3rd edition for updates...or any other book on Lyme with patient input!! Lyme is an illness with patient/doctor controversy...many doctors mistakenly thought 2 weeks, then 4, then 6 weeks was enough antibiotic treatment, and many of us relapsed!!! they then called that "post Lyme syndrome"...we called it "still being sick"!!! and "undermedicated"!!

not trying to scare you...just to let you know how...tough to treat...and controversial Lyme is...there are many articles in NY Times about it..one of the first had an old NYC address in it of mine...i used to run a NYC Lyme support group!

write any time...good luck
jess

Hey, Jess. The 30th is just around the corner. I hope you get your answers and some much needed RELIEF! I haven't been able to keep up with your thread as my internet has been on the blink and I've been sicker than a dog! I'm sorry to hear that you had to run through Manhatten in the rain in pain. That last statement sounded kind of like the line in "My Fair Lady", LOL. You know, "The rain in Spain falls mainly on the plain." Well I'm glad you made it in one piece! We've been getting so much rain, not good for pain, that my carrot patch should produce baseballbat size carrots! LOL I was thinking of you and just wondering how you were holding up. Have you found anything to help any at all? Hang in there. You've always been there for me, well at least since I've joined the forum. (((HUGS)))

According to what you said, about the Jarish Herxheimer thing. I didn't take the time to look it up, so I'm taking your word for it. I think we might have nailed Lyme's on the head if my symptoms match what you were describing. I got so bad after starting the antibiotics that I could barely walk or use my hands. I had to turn my medication bottle tops around so they weren't child-safe because I had a very hard time opening them. I found myself literally crawling up the stairs. After about a week and a half of treatment my joints are feeling much better, in fact they don't hurt at all. However, the new tick bite had developed that tell-tale red splotch within 3 or 4 days of tick removal. If that's not gone by the time I'm done with my antibiotics, I'm requesting a refill. It's looking much better (barely noticeable at all) and seems as though that "second" tick was probably infected, but since I got on the meds right away I didn't get a double whammy. Sneaky, germ carrying little arachnids! Anyway, you take care. Let us know how your appointment goes!

[jrnyc]

hey rohr
thanks for asking...the pain at injection site is less intense, but still there...i guess i'll see what the pain doc says next Monday...

it sure sounds as if you had a Herxheimer to me! that is exactly how it goes...and before patients knew what was happening, we would think the meds were making us worse, we were allergic to them, or they weren't working and the illness was getting worse!

please know that in the early days, patients were severely under medicated!!!!!! the spirochete that causes Lyme is sneaky, as you have realized...it can "hide in privileged sites," where the antibiotics cant reach...it can also go dormant, only to wake up later! in those cases, the symptoms do go away...only to come back later and try to stay forever...i am lucky all i was left with was arthritis...the germ gets into the brain, eventually...before i was diagnosed, (& when mostly male doctors were telling me i was a hypochondriac, & nothing was wrong with me!), i could not remember my street address, & got lost one day trying to get home in Manhattan! (i now have 3 graduate degrees, so it is not that i am complete idiot, but the germ was in my brain! ) so you need a medication that passes the blood/brain barrier! i was on IV for a looooong time!! ( i finally found a Lyme doctor who believed his patients! ) there is a huge controversy in the field between doctors who believe Lyme can do all kinds of crazy things, and those who dont...believe me, it can! i learned the hard way!!!

i dont say all this to scare you, but to give you the benefit of what the earlier Lyme patients learned....i was sick 1987-1989 before i got the right treatment! Lyme owned me by then! please be sure you get enuf weeks/months of treatment! then you should be fine!

i feel for you, going thru all this all at once!

take care...feel better...
jess

[foofer]

Jess,

Just sent you a PM but I think I actually did a visitor message. That will work too.

Take care and get better,
Amy

[jrnyc]

hi Amy
yes, i saw it and just wrote back to you ...(i never noticed visitor messages til recently! )

thank you again for getting those names for me...you, and your mother, are so kind! i appreciate it more than i can say!

jess

[jrnyc]

i just got back from a round trip to Manhattan...i am exhausted...

so...i saw pain doc...silent Russian...he displays zero emotion, except seems to get a little upset when he causes a patient pain (exam, injections, etc)...

long story short...i am in a lot of pain!

he had no answers...i told hm i think i have injections site spasms, plus the sciatica is back, and both hips hurt badly...
he said he injected muscle relaxers today...4 injections left side, one right side, all around hip area...wow, did they hurt (i think he injected directly into muscle!)...he planned on botox, said he mixed it already for me...if it was muscle relaxer he put in......nothing feels relaxed!!!

i do not know if any doctor can do anything for me (aside from surgery)....i told doc i think my hips hurt so badly from my discs...he doesnt think so...funny, my surgeon thinks so
but then, i dont expect pain doctors to agree with spine surgeons anymore...ever!

he wants to do another epidural end September...meanwhile, i am due to fly southern CA Sept 14th...feeling like this, it will be a rough trip!!

hope others are doing well...
jess

[Confusedmom]

Jess,

So sorry you are in a lot of pain!! Hoping the injections will take effect overnight and you'll feel better in the morning! ((Gentle hugs.))

Evelyn

[jrnyc]

thanks, Ev...i hope so, too!....

i just thought that muscle relaxer would work right away, especially since it felt like he was injecting directly into the muscles!

jess

[rohrer01]

Wow, it sounds like you had a rough day! So sorry to hear this. Maybe it will just take awhile for the meds to take effect. I hope this is the case. There can be significant bruising from injections, as you are probably painfully aware. Maybe when the initial trauma wears off, then you'll feel better. Hang in there. I hope you have a wonderful and pain free trip on the 14th!

[jrnyc]

thanks, rohr...appreciate the sympathy!
think i'm gonna call it a nite!

jess

[Pooka1]

"Silent Russian." I like that as a show name for a horse.

Can't anyone tell you why your hips hurt? Is that yet another thing or is it related? That sounds very strange but what do I know?

I hope the meds kick in soon.

[foofer]

"Silent Russian." I like that as a show name for a horse.

...or a drink

Jess, I really hate it that you are in such constant pain. There is a group of all of you (I'm getting there myself) that I just hate that you all are in constant pain. My heart sinks when I read the posts.

Sighing here, and I hope today is better.

Off to the fields after a GREAT quick vacation,
amy

[jrnyc]

hey guys
Sharon..no, no one will say...i am pretty sure it is my discs...as when i first herniated them, the pain radiated out to hips right away, to the point of not being able to walk!
i feel no difference today, except for a little additional pain behind my left knee...that wsnt there before yesterday's injections...

Amy...thanks for the sympathy...and i hope you don't join our club...the club of unrelenting pain! i think it leads to the surgical table...
have a GREAT vacation...pain free, i hope!

i appreciate the sympathy...it helps...as does my sweet puppy...who stays by my side through everything!

woof

[JenniferG]

So very sorry to hear about your pain Jess. Hug that puppy close and r e s t. Let us know how you're feeling tomorrow.