Herx?

[Guest guest]

In a message dated 11/13/1998 7:32:10 AM Eastern Standard Time,

amrhodes@... writes:

> My doctor wants me to come back on December 8th and have blood drawn

> to find out if the Doxycycline that was prescribed to me has killed

> all the bacteria. I have an HMO for my insurance and so I need

> referrals if I want to see an Infectious Disease Doctor or get other

> special help. I don't know where to turn or how to feel anymore. I

> just feel like no one gives a crap that I have this disease. Its like

> give them medicine and that will help for awhile. I feel that I would

> like to have a cane with me at all times just in case I am not able

> to hold up on my own. I suppose I will have to ask for that too, just

> so I won't have to pay an arm and leg for one.

>

> Sorry for bringing everyone down.

>

> Anne

Hello Anne:

There is no test to prove that all the bacteria were killed!

A PCR will sometimes show up positive after antibiotic therapy,

but not always. There are no absolutes. Your pain may have

been a herxie....some come with mild pain....others with tremendous

unbelievable pain. Remember that the spirochetes reproduce

every two weeks..and it is only when they are reproducing that

they can be killed. The herxie is your bodys immune system

reacting to the dead critter pieces...after they explode from the antibiotic

finally making it into the spirochete wall...this only occurs after constant

assault by antibiotics and the spirochete wall weakens until it can get in and

cause the expolsion!!!!.....The pain in your legs could be

from the spirochetes moving to another area of your body....

basically running for their lives from the antibiotics. There is

no way to know for sure. I found while I have been on IV antibiotics and when

I was just on orals...that my pain moves

from area to area....from joint to joint....coming and going....this

is common in lyme disease.

About that cane! I had to have one too.,...with the knees so

weak and painful I wanted one very badly, but couldn't afford

one. I ended up getting one from my mom and dad who bought

it at a YARD SALE!!! Check your local yard sales and flea

markets.. they picked my cane up for only $10!!! It has the

four feet and is adjustable...its listed in the JC Penneys catalog

for much more than that!!! Also, let some of your friends know

that you need one....they might have one in their closet!!!!

Take care and God Bless!

Fransea

NJ Seashore

[Guest guest]

Ann:

I am so sorry that you are feeling so down. Just one thought........if

your doctor has told you that he will run a blood test to see if " all the

bacteria has been killed " ....run---don't walk to another

doctor...........there is NO SUCH THING>

We all wish there was that magic test, but to date it does not

exist.

Hoping you are turning a corner to feeling better,

Mona

[Guest guest]

Thanks Fransea.

I will look out for those flea markets and yard sales. And I'll be sure

to tell my friends to look out for one too. And thanks for all the info

you provided also.

Anne

[Guest guest]

Mona, thank you. I told him there wasn't ANY tests that can tell anyone

that the lyme disease is gone. He also said he wanted to see if the

number was higher or lower on something. I just don't know. I'm sure

I'm not the only one, but I will say it anyway. I JUST WANT TO GET

BETTER. I hate feeling like I'm 90 years old and have no energy

whatsoever and feeling so achey all the time. What a life at 30 years

old.

Thanks again,

Anne

[Guest guest]

Hi Anne --

I'm sorry you are feeling so down. By chance, have you been keeping a

diary of your symptoms? It's very common for flare-ups to come on a

4-week cycle. It's possible that's what this is. I've had the symptom

you've described and it's very disconcerting, but it didn't last for a

long time.

Are you getting enough rest?

It's depressing to feel good for a while and then have a new symptom

crop up, isn't it? But I think it's normal when you've just started

antibiotic treatment. What dosage are you taking? Is your doctor

lyme-literate? The LLMD I went to last month told me that he believes

that doxycycline at low doses 200 or 300 mg/day is bacteriostatic -- in

other words, it doesn't kill the bacteria, it just keeps them from

reproducing, so their numbers only die slowly. He switched me to a

different drug to try to get a quicker reaction, because I was also

continuing to get new symptoms.

Take care and hang in there!

[Guest guest]

Hi I haven't really kept a good diary on my symptoms. I've had

problems with my legs aching before. I can't really say if I am getting

enough rest or not. I have been doing alot of running with my dad

getting rushed to the hospital and with visiting him and taking him

home. I usually cannot stay awake too much past 8pm anymore. Well, the

funny thing is, the only symptoms I have had are fatigue, sweats, stiff

neck, headaches, aching joints and muscles, knee pains, ankle pains and

swelling, shoulders aching and my leg pains...gee, I think that is about

everything. Oh, and at my last appointment, I found out that there was

some blood in my urine and my kidneys have been a little tender lately.

I have been on Doxycycline since September. I want a different

medication. Its 100mg twice a day. No, my doctor isn't lyme-literate

that I know of. It is definately depressing, thats for sure.

Thanks and god bless.

[Guest guest]

Anne,

Do you have the latest protocol from Dr. Burrascano? He calls for a

minimum of 300 mg of doxy per day. At lower doses it doesn't do the job.

if you need the document I can send it to you. My doctor read it --

maybe yours will too.

Jean

[Guest guest]

In a message dated 11/13/1998 11:54:12 PM Eastern Standard Time,

vanatta@... writes:

> My doctor wants me to come back on December 8th and have blood drawn

> >to find out if the Doxycycline that was prescribed to me has killed

> >all the bacteria.

> Perhaps you misunderstood your doctor.

>

> Yes, the test should be done. But he SHOULD KNOW that no blood test will

> determine whether ALL of the spirochetes have been killed. In fact, it is

> highly unlikely that they are all gone.

>

> If he really said that, you should take Dr. Burrescano's article with you

> and insist that he read it.

>

> Until medical science makes a break through in treating Lyme, you must

> assume that your body will always harbor some of the little buggers, and

> that you may have to be retreated again and again.

>

> Any doctor that states in a Lyme patient's chart that " he/she is cured "

> obviously does not know what he is doing.

>

>

RIGHT ON COLBY!!!!

fransea

nj seashore

[Guest guest]

At 07:28 AM 11/13/98 -0500, you wrote:

>From: Anne Marie <amrhodes@...>

>

>My doctor wants me to come back on December 8th and have blood drawn

>to find out if the Doxycycline that was prescribed to me has killed

>all the bacteria.

Perhaps you misunderstood your doctor.

Yes, the test should be done. But he SHOULD KNOW that no blood test will

determine whether ALL of the spirochetes have been killed. In fact, it is

highly unlikely that they are all gone.

If he really said that, you should take Dr. Burrescano's article with you

and insist that he read it.

Until medical science makes a break through in treating Lyme, you must

assume that your body will always harbor some of the little buggers, and

that you may have to be retreated again and again.

Any doctor that states in a Lyme patient's chart that " he/she is cured "

obviously does not know what he is doing.

God Bless

Colby Van Atta

------------------------------------------------------------------------

>

[Guest guest]

Dear

I was wondering if you could also send Dr. Burrasacano's protocol to me.

I went to the web cite and it said it was taken off on Oct 30th.

Thanks I hope this isn't too much of a bother.

I hope all is well with you.

God Blees,

KAREN

[Guest guest]

Colby, if I remember correctly, I think he said he knew that it wouldn't

show that all the spirochetes were killed but it would give him an idea

I guess to see if the antibiotics is enough or if I need more.

I am still having problems, the past few weeks or months have been

pretty good, but the pains in my legs are coming back. I am going to

take a copy of Dr. Burrescano's protocol with me to give to him.

Thanks and God Bless!

Anne

[Guest guest]

Dear Anne.

Your blood work will NOT be reliable. After abx treatments you may still show

positive or you may show negative. In fact some people never are seropositive

and yet, they are very sick with Lyme disease. That's one of the big problems

with Lyme disease. The tests are not always correct. Also, having a herx

reaction while takeing abx is a good indicator that the bacteria is being

killed. Too bad we have to get so much sicker in order to get well. Actually,

I had herx the entire time Iwas on abx. It is terrible. The doc quit me due

to the high cost, so I'm still sick. I would like to know if anyone that has

chronic LD has ever been cured? I need a light at the end of the tunnel.

Love to you,

Debbie P.

[Guest guest]

Debbie P, thank you for writing. I have been having a really bad

herx (so I assume it is) for a couple of weeks now. This weekend,

Saturday night, my left arm started to hurt really bad and then my

left side of my neck got so stiff, when I looked at someone, I had to

turn my whole body around. It was so painful that I almost asked my

husband to take me to the hospital. My legs have been hurting still

and both of my ankles (heels) have been hurting really bad. My next

appointment is Dec. 8, I am getting really upset about this whole thing.

I have been on Doxycycline, and for some reason, I just don't think it

is helping any. I am not feeling any better, I feel worse. I'm tired

of complaining till I'm blue in the face for anyone to do anything

about it (especially the doctors, of course). My husband is about to

go crazy on the doctors asking them, why can't they do anything to help

the pain or the disease for that matter.

Well thanks for listening...

Anne

[Guest guest]

Hi Anne,

Boy do I remember the pains that you are talking about....I had them

really bad about 6 months after my tick bite, my neck was so stiff, and

painful, that I could only walk tip toe, if I put my feet flat, the pain was

tremendous....the only thing I can say is try to hang in there, call your

doctor and tell him. I had this type of pain prior to finding my Lyme

literate doctor. He put me on zithromax and doxycycline at that time, and

the pains eased up. I am now on Ceftin and Zith, and I think I am doing

real well on that combo, as far as the Lyme symptoms anyway. Don't be

afraid to ask your doc for some pain relief when you see him on the 8th, or

if need be, call now. This also could be herx related, the pain migrates

around the body.

{{{{Gentle supportive Hugs}}}}

Marta

>

>Debbie P, thank you for writing. I have been having a really bad

>herx (so I assume it is) for a couple of weeks now. This weekend,

>Saturday night, my left arm started to hurt really bad and then my

>left side of my neck got so stiff, when I looked at someone, I had to

>turn my whole body around. It was so painful that I almost asked my

>husband to take me to the hospital. My legs have been hurting still

>and both of my ankles (heels) have been hurting really bad. My next

>appointment is Dec. 8, I am getting really upset about this whole thing.

>I have been on Doxycycline, and for some reason, I just don't think it

>is helping any. I am not feeling any better, I feel worse. I'm tired

>of complaining till I'm blue in the face for anyone to do anything

>about it (especially the doctors, of course). My husband is about to

>go crazy on the doctors asking them, why can't they do anything to help

>the pain or the disease for that matter.

[Guest guest]

Marta, thanks. I will be sure to tell the doctor of this. I think

I will make a call to him before my appointment. I hope you are feeling

much better. We're you herxing? God bless...

Anne

[Guest guest]

Hi Anne,

No, not herxing, my herniated disc is acting up, and although it is not

too painful now, it can be really difficult to get on the computer. Both of

my arms and hands are constant pins and needles. I had a new MRI last week

(as well as brain studies) and I am still waiting for the results, I guess I

will find out at my appointment in early December.

Yesterday afternoon, after bragging about how well I was doing on Ceftin

and Zithromax and the Valtrex for the shingle pain combo, I did start to

herx....overall body pain, very fatigued, and muscle twitching....but like I

said I have not had that in awhile. At least I think it has been

awhile....short term memory is bad....LOL! Hope you are feeling better

soon, I know these pains are scary to you, but they do move around, just

when you think you are dying, it stops for awhile and moves somewhere else.

No wonder people with Lyme disease doubt their sanity until they learn how

the process works.

Hugs,

Marta

>From: Anne Marie <amrhodes@...>

>

>Marta, thanks. I will be sure to tell the doctor of this. I think

>I will make a call to him before my appointment. I hope you are feeling

>much better. We're you herxing? God bless...

[Guest guest]

Marta, sorry to hear about your herniated disc. I couldn't even imagine

the pain that causes. I hope that you will find out your results

quickly so that they might be able to help you further.

Well, something happened last night, that is unexplainable. I had a

burning feeling in fingers on my left hand. It was the weirdest thing

and it really hurt. I have noticed that I have had more " tingliness "

in my arms. As if I had fell asleep on them and they were asleep.

Has anyone had that burning feeling in their fingers?

This is absolutely depressing.

Anne

[Guest guest]

Anne Marie wrote:

>

> > Well, something happened last night, that is unexplainable. I had a

> burning feeling in fingers on my left hand. It was the weirdest thing

> and it really hurt. I have noticed that I have had more " tingliness "

> in my arms. As if I had fell asleep on them and they were asleep.

> Has anyone had that burning feeling in their fingers?

>

> This is absolutely depressing.

> Anne

>

Dear Anne: I was in a store last night and I had the pins and needles

in the fingers of my right hand. Really weird!!

Lovette

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

>

[Guest guest]

YES, HAVE SAME THINK VERY OFTEN. SOMETIMES I CAN MOVE MY NECK TO HELP THIS

BECOME BETTER, I USE A SPECIAL PILLOW OR NECK ROLL.

GOOD LUCK,

REGARDS,

GAIL

[Guest guest]

Hi Anne,

I have had the burning feeling in various parts of the body, while

herxing, I think we all have. I have also felt like someone was holding a

lit match under my foot. Make sure you tell your doctor about this, I think

it is called peripheral neuropathy. You are going to get such oddball

symptoms you will begin to doubt your own sanity. I know you are very new

to Lyme and to herxes, so this must be so confusing for you. Just like all

the other fleeting symptoms this too shall pass.

Hugs,

Marta

>From: Anne Marie <amrhodes@...>

>Well, something happened last night, that is unexplainable. I had a

>burning feeling in fingers on my left hand. It was the weirdest thing

>and it really hurt. I have noticed that I have had more " tingliness "

>in my arms. As if I had fell asleep on them and they were asleep.

>Has anyone had that burning feeling in their fingers?

>

[Guest guest]

Thanks Marta, I just called my doctor and left a message about my new

symptoms. The nurse said she will talk to the doctor and call me right

back. Maybe they will change my antibiotics. Plus I am getting a cold

and so I feel even worse. When will this all end?! Thanks for your

supportive and caring messages.

{{{{HUGS}}}}}

Anne

[Guest guest]

Hi Anne,

Marta is right, you will get such crazy symtoms that last, and don't last that

it will drive you nuts. Go with the flow and make yourself as comfortale as

you can. I get pains in my feet, that feel like all my bones are loose. My

doctor, who has been my doctor for years, just shakes his head. He says, I

have the best descriptions he has ever heard. He looks forward to seeing me

every month.

Hang in the Kid!!!!

Hugs,

Connie

[Guest guest]

Hey Anne,

I hope your cold doesn't go too far. I just finished bronchial pneumonia, and

with Lyme I was super sick.

I work in a middle school, have been a school employee for 23 years. I know I

have gotten every germ availble from those kids. Some days I call it Hacker

Hotel.

Take Care

Connie

[Guest guest]

may be the start of one george......unfortunatly it gets worse before it gets

better......much worse normally.....hang in there better days are coming

Reid

[Guest guest]

Hi ,

Yup you started a HERX. Hold on you will be going for a ride. At least you

now know what it is and can deal with it. Just try and do whatever you can to

make you comfortable. I am not making fun of you. I have to use my humor to

survive Lyme.

Someday I will tell you all the crazy things I have done.

Hugs and sunshines to you,

Connie