Re: IV treatment

May 13, 1999

Val,

The new symptoms are from the herx, the IV is working. I did not feel

well till two weeks after my 6 weeks of IV Rocephin and Claforan. Give it

time. The tremors are most likely a result of the abx working. Once I was

on huge doses of amoxicillin and probenecid, worst Herx I ever had, I was a

basket case, but I did get better, and no longer have any of the symptoms I

had then, like dizziness, for one. I used to have twitches too, up till

about two weeks ago or so, now they have stopped, but who knows, they may

come back at any time.

Hope this helps to calm you,

Marta

>From: ValP74@...

>

>Hi Guys, I was just wondering if anyone could tellme how long the IV

usually

>took to start really working. I have been on for two weeks and my symptoms

>are still a little worse and I am getting new symptoms Like the tremors. I

>have never heard of new symptoms being associated with herxs so I am

starting

>to freak out. has anyone gotten new symptoms while on heavy abx, could tht

be

>part of a herx or just the disease getting worse. Please write when you

can.

>I have never been so afraid then now. I though the IV would be a good thing

>but I was doing much better on the bicillin shots. At least I was holding

my

>own. I hope yu are all feeling better -Val

May 13, 1999

In a message dated 5/13/99 2:03:28 PM, mlmccoy@... writes:

<<he tremors are most likely a result of the abx working. Once I was

on huge doses of amoxicillin and probenecid, worst Herx I ever had, I was a

basket case, but I did get better, and no longer have any of the symptoms I

had then, like dizziness, for one. I used to have twitches too, up till

about two weeks ago or so, now they have stopped, but who knows, they may

come back at any time.

Hope this helps to calm you,

Marta>>

Hi Marta, thanks for the reply. Did you actually have new symptoms come up

from your herx. that is whats happening to me. Actual new symptoms and

haveing chills here and there and running fevers periodically of 99. My

normal temp as most of us have is like 97.1. I am afraid because the tremors

are new and I have never heard of developing new symptoms from a herx. did

you actually develop new symptoms from the herx. I am sorry i am just

freaking out and confused. thank you for your help. feel better-Val

May 13, 1999

In a message dated 5/13/99 6:26:03 PM, mimianne@... writes:

<<i did not feel better at all from rocefin IV but only had it for 10 short

days. i have heard rumor that it is better to be on a combo. of oral antib.

biaxin and doxy. are mentioned as a possible combo.

RE

I am on a wide varitey of things. I am taking Zithromax, Plaquinel,

Augmentin, Mepron and the IV. It almost sounds funny as I wirte it. feel

better-Val

May 13, 1999

i did not feel better at all from rocefin IV but only had it for 10 short

days. i have heard rumor that it is better to be on a combo. of oral antib.

biaxin and doxy. are mentioned as a possible combo.

RE

>From: ValP74@...

>

>Hi Guys, I was just wondering if anyone could tellme how long the IV usually

>took to start really working. I have been on for two weeks and my symptoms

>are still a little worse and I am getting new symptoms Like the tremors. I

>have never heard of new symptoms being associated with herxs so I am starting

>to freak out. has anyone gotten new symptoms while on heavy abx, could tht be

>part of a herx or just the disease getting worse. Please write when you can.

>I have never been so afraid then now. I though the IV would be a good thing

>but I was doing much better on the bicillin shots. At least I was holding my

>own. I hope yu are all feeling better -Val

>

>------------------------------------------------------------------------

>ONElist: the best source for group communications.

>

>Join a new list today!

>------------------------------------------------------------------------

>Please send privately messages unrelated to lyme.

>/archives.cgi/

>/archives.cgi/Lyme-Docs

>Email: -subscribeonelist

>You may substitute " unsubscribe " , " digest " , or " normal " for

>the word " subscribe " ( " normal " is the opposite of " digest " )

>

MimiAnne's Specialty Coffee

(540) 980-6464

93 W. Main Street

Pulaski, VA 24301

May 14, 1999

Hi Val,

Yes, Yes, Yes, lots of new symptoms when I herxed at my worst. The

pains would move from one body part to another, one day I could not walk due

to severe pain in my feet, the next day, agonizing pains in my shoulder and

my feet would be fine. Sometimes back pain, that reminded me of the bladder

infections I had in the past. By the time I got to the doctor they would be

gone. Recurring rashes under my breast would appear when I herxed, and be

gone in a few days without treatment....Chest pains, headaches, stiff necks,

stabbing pains in my feet, and wrist, the itchies, fevers, swollen glands so

huge I could not put my chin down....I could go on and on. But please,

don't rely on my story, or anyone else, check with your doctor if you are

concerned. Keep a diary of the symptoms too.

Hugs,

Marta

-

>From: ValP74@...

>

>Hi Marta, thanks for the reply. Did you actually have new symptoms come up

>from your herx. that is whats happening to me. Actual new symptoms and

>haveing chills here and there and running fevers periodically of 99. My

>normal temp as most of us have is like 97.1. I am afraid because the

tremors

>are new and I have never heard of developing new symptoms from a herx. did

>you actually develop new symptoms from the herx. I am sorry i am just

>freaking out and confused. thank you for your help. feel better-Val

>

>------------------------------------------------------------------------

>How many communities do you think join ONElist each day?

>

>More than 1,000!

>------------------------------------------------------------------------

>Please send privately messages unrelated to lyme.

>/archives.cgi/

>/archives.cgi/Lyme-Docs

>Email: -subscribeonelist

>You may substitute " unsubscribe " , " digest " , or " normal " for

>the word " subscribe " ( " normal " is the opposite of " digest " )

>

May 14, 1999

Val,

My doctor told me that it is a good thing to get sicker. It tells them

the antibiotic is working. I also have a form that explains that you can

experience new symptoms. Do you have a Fax? I could send it to you. If

not I will scan it and send it as an attachment...Let me know..Hugs

[Lyme-aid] IV treatment

>From: ValP74@...

>

>Hi Guys, I was just wondering if anyone could tellme how long the IV

usually

>took to start really working. I have been on for two weeks and my symptoms

>are still a little worse and I am getting new symptoms Like the tremors. I

>have never heard of new symptoms being associated with herxs so I am

starting

>to freak out. has anyone gotten new symptoms while on heavy abx, could tht

be

>part of a herx or just the disease getting worse. Please write when you

can.

>I have never been so afraid then now. I though the IV would be a good thing

>but I was doing much better on the bicillin shots. At least I was holding

my

>own. I hope yu are all feeling better -Val

>

>------------------------------------------------------------------------

>ONElist: the best source for group communications.

>

>Join a new list today!

>------------------------------------------------------------------------

>Please send privately messages unrelated to lyme.

>/archives.cgi/

>/archives.cgi/Lyme-Docs

>Email: -subscribeonelist

>You may substitute " unsubscribe " , " digest " , or " normal " for

>the word " subscribe " ( " normal " is the opposite of " digest " )

>

May 15, 1999

Matrta, Thank you again for being so helpful. How did these symptoms you were

having during the herx differ from you regular lyme symptoms? What I mean is

I have had all kinds of migrating pains and weirdsymptoms all throughout this

crazy illness so how would I sparate the regualr symptoms from a herx? Hope

you are feeling better and Thank you -Val

May 15, 1999

In a message dated 99-05-14 09:41:27 EDT, you write:

<< Val,

My doctor told me that it is a good thing to get sicker. It tells them

the antibiotic is working. I also have a form that explains that you can

experience new symptoms. Do you have a Fax? I could send it to you. If

not I will scan it and send it as an attachment...Let me know..Hugs >>

, That would be great if you could fax that to me. My fax number at work

is 212-995-9836. If you get a chance I would really appreciate it Feel better

-Val

May 16, 1999

Hi Val,

Maybe if you can share exactly which new symptoms you are experiencing

we can answer this better. Thinking back (not easy when you have

neuro-Lyme) there were many symptoms I experienced with herxing that I never

had again afterward....one that I recall is really bad stiff necks that ran

down the back of my spine, I could not put my heels down without pain, and

walked around on tiptoe, when I had to get up. There are others, and I am

trying to recall them, will write about them as I remember....right now I

haven't finished my first cup of coffee of the day so I am groggier than

usual.

Hugs,

Marta

>From: ValP74@...

>

>Matrta, Thank you again for being so helpful. How did these symptoms you

were

>having during the herx differ from you regular lyme symptoms? What I mean

is

>I have had all kinds of migrating pains and weirdsymptoms all throughout

this

>crazy illness so how would I sparate the regualr symptoms from a herx? Hope

>you are feeling better and Thank you -Val

May 16, 1999

In a message dated 99-05-16 06:40:33 EDT, you write:

<< There are others, and I am

trying to recall them, will write about them as I remember....right now I

haven't finished my first cup of coffee of the day so I am groggier than

usual.

Hugs,

Marta >>

Hi Marta, Right now my new symptoms are tremors in arms and legs and also

pains in elbows which I mever really had. I also am getting fevers of 99-100

on and off when my normal body temp is like 97 and I NEVER get fevers.

Hope you are feeling well and by the way Do you drink actual coffee with

caffeine. I basically flip out and get very sick if I touch the stuff. -Val

May 16, 1999

Marta, thank you once again for your words of wisdom. i feel a little better

when I can think this is a herx and not disease progression. I am so glad you

are feeling pretty good YAY!! Hope you continue to feel this way God Bless

You-Val

May 16, 1999

Hi Val,

Those symptoms sound like herx reactions to me, and not something you

will always have. The fevers are normal when your immune system is fighting

the toxins released from the dying spirochetes. If the pains in your elbows

continue for several weeks, you better notify your doctor. I had continuous

pain in my shoulder, turned out I had Herniated discs, compliments of Lyme.

The tremors in your arms and legs also seem herx related.

I am feeling pretty good, my husband and I worked in the yard a bit

yesterday and today, and it felt good to be productive, I did not overdo

though. Yes, I need my coffee, I drink two cups a day of Nescafe instant, I

stay away from the strong stuff. Some mornings I am a bit nauseous and can

only handle one cup, but then I feel cheated for the rest of the day....LOL!

Hugs,

Marta

>From: ValP74@...

>>

>Hi Marta, Right now my new symptoms are tremors in arms and legs and also

>pains in elbows which I mever really had. I also am getting fevers of

99-100

>on and off when my normal body temp is like 97 and I NEVER get fevers.

>

>Hope you are feeling well and by the way Do you drink actual coffee with

>caffeine. I basically flip out and get very sick if I touch the stuff. -Val

May 17, 1999

side note: inexpensive/grocery store " robusta bean " coffee's actually

contain more caffeine than the coffee shop " arabica bean " . you'd be better

off going to your local coffee shop and buying gourmet beans also use less

grounds when you make it to cut it back even more. espresso drinks such as

cappuccino or latte's even have less caffeine per oz compared to a cup o'

joe. EVEN BETTER is to only drink one cup of coffee a day and subst. green

tea for your other cups (green tea DOES have caffeine also but not as much

as coffee).

>From: " J & M McCoy " <mlmccoy@...>

>

>Hi Val,

> Those symptoms sound like herx reactions to me, and not something you

>will always have. The fevers are normal when your immune system is fighting

>the toxins released from the dying spirochetes. If the pains in your elbows

>continue for several weeks, you better notify your doctor. I had continuous

>pain in my shoulder, turned out I had Herniated discs, compliments of Lyme.

>The tremors in your arms and legs also seem herx related.

> I am feeling pretty good, my husband and I worked in the yard a bit

>yesterday and today, and it felt good to be productive, I did not overdo

>though. Yes, I need my coffee, I drink two cups a day of Nescafe instant, I

>stay away from the strong stuff. Some mornings I am a bit nauseous and can

>only handle one cup, but then I feel cheated for the rest of the day....LOL!

>Hugs,

>Marta

>

>>From: ValP74@...

>>>

>>Hi Marta, Right now my new symptoms are tremors in arms and legs and also

>>pains in elbows which I mever really had. I also am getting fevers of

>99-100

>>on and off when my normal body temp is like 97 and I NEVER get fevers.

>>

>>Hope you are feeling well and by the way Do you drink actual coffee with

>>caffeine. I basically flip out and get very sick if I touch the stuff. -Val

>

>------------------------------------------------------------------------

>ONElist: the best source for group communications.

>

>Join a new list today!

>------------------------------------------------------------------------

>Please send privately messages unrelated to lyme.

>/archives.cgi/

>/archives.cgi/Lyme-Docs

>Email: -subscribeonelist

>You may substitute " unsubscribe " , " digest " , or " normal " for

>the word " subscribe " ( " normal " is the opposite of " digest " )

>

MimiAnne's Specialty Coffee

(540) 980-6464

93 W. Main Street

Pulaski, VA 24301

May 20, 1999

Dear Marta,

I was diagnosed with Lyme 6 weeks ago after suffering 2 1/2 years. I

told my neurologist, internist and the neurologist at the Mayo, sdale.

They all saw the bulls eye rash and all told me " you don't have Lyme " .

The reason I'm writing is you mentioned that you have HNPs. I have 4 of

them. I even had a discectomy at T10-11 (the neurologist thought my near

problems were due to the disc and talked me into the surgery). Please give

me any info, if any on the relationship between the HNPs and Lyme.

Thanks,

Larry Yenko

June 12, 1999

Hi Happy,

Great news, hope this is the treatment that does it for you. I was on

Zithromax when I was on the IV Rocephin too, and did not have any problems

with the additional meds. The fluttering sounds like anxiety, but I am glad

you are a health professional and know what to look for as far as reactions

to meds. Hang in there and get better, glad you have Amy and this list to

bounce your problems on. It is so comforting to be able to talk to people

who have been through this mess.

Hugs,

Marta

-

>From: HapsQuilt@...

>

>I wanted to let folks know that I have now started treatment for lyme. It

>seemed to take forever, but now I know there is hope. I got my PICC line

>Thursday and had first treatment of 2 Gms IV Rocephin yesterday and second

>treatment today. I expect to be on this for 3 mos. and will be adding Z-max

>after a month or so. I am so fortunate to have found a LLMD....and wish the

>same for all the others. I am a nurse and work in a large teaching

>institution and had to find my LLMD by networking on the net!!! My only

>reaction has been a fluttery feeling in my chest.....I think it is anxiety,

>and is getting better. (My vital signs were great). I stayed in hospital

for

>observation overnight, as admission was refused by ins.co. Amy, who posts

>here, lives near me and we have been e-mailing.....hoping to talk at

length,

>but she has been very busy with her son and I am too tired to pick up the

>phone! This list has been invaluable to me.....sharing experiences is very

>helpful.

>Happy

July 21, 2004

<<<<< It was short sighted and childish of me to expect that I could

continue to act likeI could lift everything, vacuum everything, I wash my

hair without help,etc. just because I didn't want to say " help me please " .

I had to limit my lifestyle somewhat, I had to prioritize what I really

needed to do vs. what I wanted to do, and how badly I wanted to do it. I

couldn't expect to go at my usual pace, then get frustrated with myself or

my support people when that couldn't happen.>>>>>>

I'm the person who had five lines...two replacements were my own fault. I

never needed to be sedated, I guess I have a high level of tolerance for

pain.....because I didn't think it was too bad....just a little discomfort.

The lines never caused me dependency. I didn't feel I lost my independency.

When I dislocated my elbow a few years ago.....then I felt somewhat

dependent......or when I had foot surgery.

I had lines in for 8 months.......I vacuumed, bathed, cooked, went to work,

and was even active. I went in my lake too with a plastic cover over the

arm. It didn't stop me from doing anything.

Try functioning on Crutches........very difficult.

So having a PICC line is not bad at all........I'm sure your daughter will

be fine.

Connie

connieknwnj

It must happen in your mind before it happens in your life!

July 21, 2004

My post on IV treatment wasn't meant to offend anyone.

I just didn't want others to be scared off and not try IV abx....(by hearing

about bad experiences and loss of independency while having a PICC line).

I no longer have lyme symptoms.....the IV abx has cured me, followed up by

supplements from an Alternative Dr. to restore my depleted immune system.

I'm sorry I offended others. That wasn't my intent.

I stick around to help not hurt.

Again my appologies.........please no personal emails

Thank-you,

Connieknwnj

July 21, 2004

Connie, As someone new to this site, I think it is important to share POSITIVE

experiences on this site as much as the struggles. We HAVE to believe we will

heal! Again, I have had a great experience on IV and would also recommend it.

Folks themselves reading the site should gauge both kinds of experiences (good

vs the bad) before they go for IV. It is a personal choice...BUT with a long

term bacterial infection such as Lyme, one has to kill it or live with the

consequences...and if IV therapy could cure you--why not be open to it!

Char

connieknwnj <conniek@...> wrote:

My post on IV treatment wasn't meant to offend anyone.

I just didn't want others to be scared off and not try IV abx....(by hearing

about bad experiences and loss of independency while having a PICC line).

I no longer have lyme symptoms.....the IV abx has cured me, followed up by

supplements from an Alternative Dr. to restore my depleted immune system.

I'm sorry I offended others. That wasn't my intent.

I stick around to help not hurt.

Again my appologies.........please no personal emails

Thank-you,

Connieknwnj

July 21, 2004

Wow, I didn't want to *scare* anyone! When I replied to

the post, I thought it was appropriate for me to write realistically

about my experiences since someone asked specifically for people's

experiences. I just re-read my post and I don't think it sounded like

I was condemning this form of treatment. I never would suggest

someone not get it! But I guess my post was read as really down on

the whole picc thing since two people now have said or suggested I

need to be more positive (?). Honestly, if I thought my experiences

were that terrible, I probably would not have included them. I do

believe the IV abx helped me immensely and I would have been worried

that posting a truly horrible experience might scare someone off. But

I didn't think my experiences were that bad since I've heard much

worse (on this list in fact - the herx and line infection stories

scared me half out of getting the IV myself!). I hope I didn't scare

anybody out of getting a picc line!

Does the list have any sort of guidelines about not posting our

personal experiences if they might be unpleasant or alarming by some

standards? If so, I think it would be a good idea to post them on the

list. And if not, we should make that clear, otherwise this exchange

might have the effect of making people feel they should censor

themselves.

I kind of feel that way right now in fact....

-

p.s. connie, I didn't see your " no personal e-mails " request until

after I wrote back to you off list. I am sorry. No flames intended.

July 21, 2004

> My post on IV treatment wasn't meant to offend anyone.

> I just didn't want others to be scared off and not try IV abx....

(by hearing

> about bad experiences and loss of independency while having a PICC

line).

>

> I no longer have lyme symptoms.....the IV abx has cured me,

followed up by

> supplements from an Alternative Dr. to restore my depleted immune

system.

>

> I'm sorry I offended others. That wasn't my intent.

> I stick around to help not hurt.

>

> Again my appologies.........please no personal emails

> Thank-you,

>

> Connieknwnj

July 21, 2004

I did 15 mo of IV abx and finished last Nov, I kept the hickman in because I was

doing IV vitamins at my house. I got a very bad staph infection and felt like I

was on my death bed. The home health care serv. had me doing " shower care " for

the hickman, which I would not recommend doing. They kept saying they have done

that for a long time. After 15 mo. of IV abx I was not " cured " I have been on

oral and IV abx for 5yrs and have not seen anyone " cured " - at best I have seen

remission. And then, it is back on oral or IV abx. I wished someone had been

honest with me 5yrs ago, back then I was thinking I would be " cured " also.

Char Healy <charphealy@...> wrote:

Connie, As someone new to this site, I think it is important to share POSITIVE

experiences on this site as much as the struggles. We HAVE to believe we will

heal! Again, I have had a great experience on IV and would also recommend it.

Folks themselves reading the site should gauge both kinds of experiences (good

vs the bad) before they go for IV. It is a personal choice...BUT with a long

term bacterial infection such as Lyme, one has to kill it or live with the

consequences...and if IV therapy could cure you--why not be open to it!

Char

connieknwnj <conniek@...> wrote:

My post on IV treatment wasn't meant to offend anyone.

I just didn't want others to be scared off and not try IV abx....(by hearing

about bad experiences and loss of independency while having a PICC line).

I no longer have lyme symptoms.....the IV abx has cured me, followed up by

supplements from an Alternative Dr. to restore my depleted immune system.

I'm sorry I offended others. That wasn't my intent.

I stick around to help not hurt.

Again my appologies.........please no personal emails

Thank-you,

Connieknwnj

July 21, 2004

HI

Thought I'd share my experience with IV. I have had picc line. in

about 6 weeks now. It took 5 tries the first time in radiology and

would not go, rolling veins. Then a week later the first try made it.

My groshong (sp) no heprin =takes saline to flush, and I try to take

rocephine the same time every day but don't always have that luxury,

so I don't worry about it. I do it when I am able. It can be a bit

like chinese torture, but I found that wrapping the extension in

gauze to give it padding helps immensly. It's placed just above the

fold of my left arm which is a very sensitive area, but you learn to

adjust.

I have felt much better ,although skin problem still exists. Taking

showers is a bit of a nuisance but I wrap my arm in saran wrap and

tape it, works wonderfully. Most of cognitive and joint pain has

eased up. I wish this was my first choice,but unfortunately we

usually have to follow a certain regime. I don't know what I'll be

taking,if anything, when I have it removed but am very thankful for

it at this time.

Cierra

February 19, 2007

My daughter (19) is scheduled to begin IV this week. She chooses not to go

online to the

teen support groups. But it would help me a great deal to know what other teens

are

going through...any moms or dads out there who can describe life with a teen

with Lyme.

We think she has had Lyme for close to 10 years...we have been treating it for

close to a

year. Had some set backs...so things aren't much better than when she started!

I find the

hardest part is being patient...she is so tired and finds it so hard to

communicate.

sometimes I lose my patience..and then feel so very guilty! She often feels so

bad that she

just asks me to come sit with her...I don't want to say " no " as I realize how

much she is

suffering, but the house seems to be falling down around me! We have no

support...family is either far away or thinks we are " crazy " . How do other

people deal with

this?

>

> Hi to all! My daughter is supposed to start IV meds in about 6

> weeks....that is if she survives that double dose of doxycycline that

> was added to her list! I'm not even sure which drug the LLMD is going

> to start her on, but he did mention that it comes in a cheaper generic

> form. What has been your experience with this treatment? Cost and

> insurance coverage? We did get a copy of the insurance issue of the

> Lymes Times for advise. I'm trying my best to keep positive thoughts

> going. She has been talking to a few teens on line that are telling

> her horror stories....which may be true...but, scary!!

> Thanks, and I have all of you brave fellow parents in my prayers!

> God bless,

> Patty

>

February 23, 2007