Re: please Help! Confused

[Guest guest]

Val,

I think it could be a herx. Don't fight it!!! If your body wants to sleep

all day then sleep. Get as much rest as possible and try and eat healthy. I

hope you feel better.

[Guest guest]

Thank you . I hope you are feeling better too. -Val

[Guest guest]

Hi Val,

I can't tell you why you feel so tired, but I can tell you that both times

I've been on IV the same thing happened to me. I literally slept for 18

hours a day for the first week! The second week was much better, I was still

very tired but it wasn't total exhaustion.

Take care,

[Guest guest]

Dear Val.

I've been on IV twice and both times the first weeks were awful!! You

probably are herxing which as awful as that is ... is also one of the ways we

get better. It is a shame that in order to kill those little #@#@$ it has to

feel like we're getting killed along with it.

This last time was much worse then my first time about 1 1/2 years

ago. This time I started to hurt during infusion! This time I went to bed

crying and trying to sleep to escape the pain. BUT, this time, I'm better

then I've been since I first got LD.

Hang in there and it will all be worth it someday. A few more weeks

and you'll start to feel better day by day. You'll be able to stay up ALL

DAY!! That was a big deal for me to be able to stay up without having to go

lay down at some point. Not saying I did much, but I was AWAKE!!!

My best,

Marleen

[Guest guest]

Thank you . One more question; After the second week did you improve on

the IV and did the tiredness get better each week?-Val

[Guest guest]

Thank you Marleen. How long did your last IV therapy last? I am on it for 6

weeks. I hope you are still feeling better -Val

[Guest guest]

In a message dated 5/3/99 1:49:49 PM Eastern Daylight Time, ValP74@...

writes:

> Thank you Marleen. How long did your last IV therapy last? I am on it for 6

> weeks. I hope you are still feeling better -

Hi Val,

I did 6 weeks of Clafron which I *feel* gave me my mind back and 7

weeks

of IV Doxy which I *feel* gave me my body back. Our doctor said he would keep

going for as long as he could. I think we should be able to stay on IV until

were

symptom free -- but try to get the insurance to agree to that. If you still

have lots

of symptoms when it's getting toward the end of your 6 weeks, be sure to tell

your

doctor that. You may have to stand up for yourself and force him to do so with

the insurance company.

Good luck,

Marleen

[Guest guest]

Hi Val,

Yes, the fatigue did subside as the weeks went by. But I actually found it a

relief to be able to sleep. After about the second week I did start feeling

much better. It wasn't as a drastic change or the end of one symptom, it

was more like all my symptoms began to subside gradually. The largest

improvement I felt was with the neuro problems. Keep us up to date as you

improve. And get as much sleep as you possibly can!

Take care,

[Guest guest]

Thanks . I know where you are coming from. Are you still feeling

better without any IV? Are you still taking orals-Val

[Guest guest]

ValP74@... writes:

> Are you still feeling

> better without any IV? Are you still taking orals

Val, it's only been 4 weeks since I stopped. I've been off everything to give

my body a rest, but we are working out the details of where to go from here

with orals. I believe I still need something. But yes, I'm much, much better.

I was able to help over at the Petsmart Adoptathon on Sunday for a few hours

for the Akita Rescue which I used to dedicate a lot of my time to, but I've

been too sick to even do volunteer work for animals. Now, that's really sick

for me!

I want to add though that in my case, I might have been re-infected last

year. I found a deer tick imbedded in my body AGAIN after having been sick

for almost 2 years. I almost fainted when I saw it and I bust out crying like

a little girl! So, my point is, this might not have all been from one bite.

We knew I had been bitten at least twice before I was diagnosed, so that may

explain (partially) why I've been sick for so long.

Hope everyone has several tubes of the Avon Sunscreen product in the

blue/green tube that says " deer tick repellent " on it. I don't mean the

regular Skin so Soft, but the sunscreen stuff that is very light and you

don't even know you have it on. When I got that tick on me, believe me, I

wasn't hanging around outside as I was too sick and actually too paranoid to

hang around outside. Those little creatures are laying there waiting for a

host on our lawns, not out in the woods! Gee, I just creeped myself out,

sorry!

Marleen

[Guest guest]

Hi Marleen, I definately agree that if you are still having symptoms you

should go back on antibiotics and stay on orals for a long time. I wish I

would have stayed on meds the first time I got diagnosed five years ago. I

got about 80-90% better and would go off. I would always relapse then months

to a year later. Now I am just trying my hardest to get back in remission. I

am terrified to go off antibiotics and probably won't for a long time. We'll,

continue to get better -Val

[Guest guest]

Oh I forgot to ask you. Were you taking antibiotics when you got bit again?

[Guest guest]

ValP74@... writes:

> Oh I forgot to ask you. Were you taking antibiotics when you got bit again?

Yes, Val I was! I was on orals NON-stop for over 2 1/2. I called my LLMD

office

as soon as I found the tick and one of the women said " Oh, with all that your

on, it shouldn't be a problem. " But, again, I don't KNOW what happened but

I never really got well ... very short remissions .... until now.

Marleen

[Guest guest]

In a message dated 5/4/99 1:55:10 PM, swsftwtx@... writes:

<< Just an opinion, but it sounds like to me you've

found a very effective combination of treatment or

new abx, or the Lyme now reacting to one you've

had before but possibly are receiving different

brand vs. another, because what you describe

with the Mack truck, seems to be " classic " fibro,

but since I have the fibro myself, know that when

I started taking abx, just orals, I felt like I'd been

beaten up, run over by that Mack truck, and for

good and final measure, felt like someone had

taken a steamroller to me to finish the job! >>

Hi , I was just wondering if you were ever told that this " mac truck "

feeling was a herxheimer reaction, or if not, then how were the abx affecting

your fibro. I don't think I have fibro because my symptoms are manily

neurological. Are you still taking abx. now? hope you are feeling better-Val

[Guest guest]

Hi Val & Lyme Aid Members,

Just an opinion, but it sounds like to me you've

found a very effective combination of treatment or

new abx, or the Lyme now reacting to one you've

had before but possibly are receiving different

brand vs. another, because what you describe

with the Mack truck, seems to be " classic " fibro,

but since I have the fibro myself, know that when

I started taking abx, just orals, I felt like I'd been

beaten up, run over by that Mack truck, and for

good and final measure, felt like someone had

taken a steamroller to me to finish the job!

I've had the joint pain since late 70's and it would

flare and only learned it was Fibro much later and that

these periods of worsening were called flares! My

Lyme doctor tells me that the fibro I have caused by

the undiagnosed and untreated Lyme.

My initial reaction to being on just oral antibiotics,

Amoxil, at 3 grams per day was complete and total

exhaustion and overwhelming pain. I can maybe do

one thing in a day, like go to the doctor and come home

with someone else driving and I'm wiped out but good.

I continue to try to do small tasks around the house to

help my hubby out, but almost always end up back in

bed with terrible pain having to lie on heating pads and

under my electric blanket. I was so happy when I was

first on the abx and able to sleep for 10-16 hours per

day since I've been so sleep deprived most of my

adult life.

Now, I wish for those 10-16 hours sleep periods as

I'm down to sleeping 2 hours in 24 and I'm so very

very tired and totally exhausted. I know the abx can

cause people to be tired and believe that happens a lot,

but also as in my case, lack of restorative sleep adds

to the whole picture.

I just told my Lyme literate doctor about how much I was

sleeping and went with the flow. I figured my body needed

the kind of sleep I was getting or else I would not be able

to sleep so long. Each of us who has Lyme needs to let

our significant other, families or friends who understand that

we have Lyme know to tell us when we're acting totally

different from what is " normal " for us. We're not always

the best judge of what's going on with ourselves. It has

to be someone you trust completely. In my case it's my

husband. He goes with me to my medical appointments

because I can't drive anymore and because I can't always

answer the questions the doctors have regarding how

I've been doing since the last appointment.

If you're seriously concerned about the amount of sleeping

you're doing, discuss it with your physician. Just make the

doctor aware of what your body is doing. So much of what

we experience the Lyme literate physicians have seen before

and that's one of the major reasons being treated by a Lyme

literate physician is so very important to each one of us.

Wishing us all health and freedom from pain,

both physical and emotional -

ValP74@... wrote:

> From: ValP74@...

>

> Hi Guys, I was just wondering if anyone could give me some advice or

> information on my current condidtion. i just started back on IV on Monday and

> after about three days I was totally exhausted. I never really had what

> people described as a herx, but in the past sometimes I would have aches and

> pains throughout my whole body on antibiotics and feel like I just got hit by

> a mack truck. I was on IV five years ago and remember just slowly improving.

> Now I am just totally wiped out. I am not really in much pain but my

> headaches are a little worse at times and I am sooooo tired. Do any of you

> think this is a herx or just the medicine making me tired. I can't tell you

> how tired I am. I want to sleep all day. I feel totally wiped out. Please

> write back with some feedback I am sooo confused. Thanks! Hope everyone is

> feeling better this week-Val

>

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[Guest guest]

Marleen,

The wonderful Lyme doc I just started seeing told

me that different strains of Lyme respond to

different antibiotics. She told me that I could

have been bitten by a tick with four spirochetes

in it, all the same strain, or by a tick with 100

spirochetes of four different strains. The

different strains seem to have different

" specialties " and cause different degrees of

problems in joints, CSF, nerve sheaths, etc. This

would account for some of my symptoms disappearing

with doxy but others continuing or even getting

worse.

This is why she said it's crucial to combine

different drugs and to keep switching around as

soon as improvement slows or stops -- because you

could have wiped out one strain but others could

still be thriving.

I wonder if that would explain how you could

become ill even though you were still on abx. Just

a thought.....

Jean

[Guest guest]

Hi Val,

I agree with you, my family doctor has kept me on antibiotics since I got

bit. I am so glad. Everyone seems to relapse. I have to watch my immune

system with vitamins and such, but I will never go off them. I have to work

for insurance and I couldn't function without them.

Even with them on days I don't know what I am doing.

Good luck.,

Connie

[Guest guest]

Hi

Your doctor sounds very lyme literate hats off to him or her.

Connie, MI

[Guest guest]

Hi Connie, I am sorry to ask you because I know you have told me before but

What are you taking now (for maintanence I guess)? -Val

[Guest guest]

Hi Val,

I was on Zithromax for about 3 years for maintainence. And just went back to

Biaxin for sinus, tooth infection. It gave me a bad herx, so maybe it was

time to change. I will ask him the next time I go.

Hugs,

Connie, MI

[Guest guest]

In a message dated 5/5/1999 3:07:01 PM Eastern Daylight Time, Cslyme@...

writes:

<< And just went back to

Biaxin for sinus, tooth infection. It gave me a bad herx, so maybe it was

time to change. I will ask him the next time I go. >>

Connie: Biaxin/Plaquenil combo was what got me where I am

today.....symptomless for one year TODAY )......after trying many others

but with always a relapse. Who knows, tomorrow I might be crying again in

pain but for today it is wonderful )......I hope and pray for the same for

everyone.

Mona

[Guest guest]

In a message dated 5/5/99 4:20:09 PM Eastern Daylight Time, WISHXXX@...

writes:

> Biaxin/Plaquenil combo was what got me where I am

> today.....symptomless for one year TODAY )......after trying many others

> but with always a relapse.

Mona,

I am SO HAPPY for you! I'm feeling better then I have since this all

happened

but at the 4 week period I got a nasty flair which means THEY ARE STILL

THERE!!!

I'm in the process of discussing where to go next with orals, how

much of each did you take? I've never been on either of those drugs.

Thanks!

Marleen

[Guest guest]

In a message dated 5/5/99 3:07:00 PM, Cslyme@... writes:

<< Hi Val,

I was on Zithromax for about 3 years for maintainence. And just went back to

Biaxin for sinus, tooth infection. It gave me a bad herx, so maybe it was

time to change. I will ask him the next time I go.

>>

Hi Connie That is really weired that you were put on Biaxin after the

zithromax. They are of the same class of drug and are very closely related.

Do you kow why you were switched to the biaxin instead of just keeping witht

he zithromax. Also when you said you herxed bad what happened. I still can't

get a grip on this herx thing. Did you actually feel your symptoms get worse

or did you just feel really sick? -Val

[Guest guest]

In a message dated 5/5/1999 5:02:16 PM Eastern Daylight Time,

LymeFightr@... writes:

<< I'm in the process of discussing where to go next with orals, how

much of each did you take? I've never been on either of those drugs >>

Marleen: I was on 500 mg. of Biaxin twice a day and I am afraid I don't

remember the dosage of Plaquenil. However, I had been on the same dosage of

Biaxin three times before ( alone) and always relapsed in about 5 to 6

months. Who knows, I may relapse again but this is the longest " normal life

human being " phase I have had since 1993. You do have to go to an eye doctor

prior to taking the plaquenil and have to go for checkups every 6 months

thereafter due to a possibility of it causing a cataract condition. I did

not have any problem. I also had acupuncture and stayed on my usual

supplement regime ( magnesium, vitamin E, Centrum Silver, B-complex,

hormone replacement therapy, Co-Q10). Just a note: I started on the hormone

replace therapy two months into my regime of Biaxin/plaquenil. I don't know

how old you are, but this might be a consideration. It just stands out in my

mind that I had been on Biaxin previously with relapses. Who knows, it might

be the plaquenil??????? or the hormone therapy??????? or a combination. I

just know I haven't felt this normal in years. I had actually had to quite a

" part time " job for a year to give my body a chance to recover. My doctor

told me that I had too many things going on in my life and something had to

go. I had to give my immune system a chance to do its job, also. You might

want to mention this to your doctor....see what he thinks ? Good luck and

God's blessings on you every day.

Mona

[Guest guest]

HI Marleen and everyone, I have been on Plaquinel and Biaxin and also

Zithromax and amantadine. They used to work great and put me in long

remissions. I know people who say they have been cured by using these combos

so I definately think it is worth a try. Anyway You said that in the fourth

week you had a flare and I was wondering what symptoms that consisted of. I

am now having some foggyness since going on IV and don't know if a herx could

actually increase the fog. Please let me know your experiance with this and

anyone else also. I don't know if my worsening of headache and fog could be a

herx. Feel better everyone -Val