Re: Question regarding changing treatment---Help Please!

[Guest guest]

Get the 6 weeks from your primary Dr. because insurance will pay for that, then

go to Lyme Dr. and let that Dr. continue your care. Keep the PICC line in as

long as needed. As long as your Lyme Dr. is willing to write you a prescription

for your antibiotic, you can get it filled at any compounding pharmacy, we got

mine for $13.00 day for generic. Your insurance should pay for visiting nurse

to come to your house to change your bandage. If you find a good home health

care agency, they will help you organize everything. Hang in there. Penni

[ ] Question regarding changing treatment---Help Please!

I saw a LLMD for the 1st time in April and began oral abx treatment

and the plan was to see how that went and likley go onto IV abx at my

2nd visit.

My pcp wanted me to give one more local ID MD a shot and I saw him

yesterday. While he told me he does not practice the way MD's out of

mainstream do and will not likley do things the way my LLMD would that

he is willing to try 6 weeks of IV Rocephin and I go today for PICC

placement. This is great for us financially as it would be out of

pocket if this were done through my LLMD which also includes travel a

few hours away.

I guess my questions about. What does this mean if the 6 weeks is no

enough. I KNOW this treating MD will not go any further than 6 weeks

of treatment and he said if that doesn't do the trick then he does not

know what to do and that would be the end of the line for him. What

if I start the ABX, start to get better, stop them at 6 weeks and get

sick again? Is this going to set my treatment back even further?

Will it be harder for the IV ABX to work if I have to start them

again? I'm so confused about what to do and want to do what's best.

I've been suffering for a long time now and have 2 small children that

I have got to get better for. Do I just need to accept that if this 6

weeks of treatment does not work that the best hope from that point on

is pain control? Do I need to go back to the LLMD before the PICC is

removed and see if he would want to continue where the other ID is

leaving off? I don't want to play one off of the other but I know at

the end of this 6 weeks this guy is done with me and my LLMD is in for

the long haul. I have read and see all the reports/statments here and

other places about chronic lyme being treated long term but honestly,

I see so many people who continue to struggle and repeatdly go on

these massive ABX that I don't even know which side of the line I'm on

anymore when 1 month ago, it couldn't have been more clear to me!

Sorry so long...I'm just so confused at this point!

[Guest guest]

My non- educated opinion:

be cautious of IV antibiotics. Ask many questions such as " does this

deliver the abx better than oral abx? " IV antibiotics seems like a

step away from death to me.

It's my impression that the typical patient will be on some sort of

abx for a couple of years.

Find a doc that specializes in Lyme and skip the PCP. Many things in

life OJT (on the job training) is OK. heart surgery and lyme are

likely not good fields for OJT.

My history:

optic neuritis april 2000

MS diagnosis : April 2004

Rebif, Copaxome, LDN, EAP

disability retirement: May 2006

Lyme diagnosis: Feb 2008

doxycycline: 100mg twice per day. Major herxing! right hand quit

working. " walk " with two canes.

[Guest guest]

I would take your 6 weeks and keep the pic line. In the meantime,

work on finding another doctor. Email me privately and let me know

where you live, and I can give you some names of LLMD's that might

be able to help. Hang in there until you find the right doc. if

there's anything i have learned through all of this, it is to trust

your gut instinct. Some doctors don't know or care about what is

best for your case, especially if they follow the " typical " protocol

for treating Lyme.

Take care,

Lori

>

> I saw a LLMD for the 1st time in April and began oral abx treatment

> and the plan was to see how that went and likley go onto IV abx at

my

> 2nd visit.

> My pcp wanted me to give one more local ID MD a shot and I saw him

> yesterday. While he told me he does not practice the way MD's out

of

> mainstream do and will not likley do things the way my LLMD would

that

> he is willing to try 6 weeks of IV Rocephin and I go today for PICC

> placement. This is great for us financially as it would be out of

> pocket if this were done through my LLMD which also includes

travel a

> few hours away.

> I guess my questions about. What does this mean if the 6 weeks is

no

> enough. I KNOW this treating MD will not go any further than 6

weeks

> of treatment and he said if that doesn't do the trick then he does

not

> know what to do and that would be the end of the line for him.

What

> if I start the ABX, start to get better, stop them at 6 weeks and

get

> sick again? Is this going to set my treatment back even further?

> Will it be harder for the IV ABX to work if I have to start them

> again? I'm so confused about what to do and want to do what's

best.

> I've been suffering for a long time now and have 2 small children

that

> I have got to get better for. Do I just need to accept that if

this 6

> weeks of treatment does not work that the best hope from that

point on

> is pain control? Do I need to go back to the LLMD before the PICC

is

> removed and see if he would want to continue where the other ID is

> leaving off? I don't want to play one off of the other but I know

at

> the end of this 6 weeks this guy is done with me and my LLMD is in

for

> the long haul. I have read and see all the reports/statments here

and

> other places about chronic lyme being treated long term but

honestly,

> I see so many people who continue to struggle and repeatdly go on

> these massive ABX that I don't even know which side of the line

I'm on

> anymore when 1 month ago, it couldn't have been more clear to me!

> Sorry so long...I'm just so confused at this point!

>

[Guest guest]

I'm still rather concerned about an IV line. I wouldn't have one put

into me, but that's just me. If the doc makes a convincing argument

that the thing is safe and can deliver a drastically better than oral

abx would, then so be it. Just looking at the surface, we have to

take some sort of abx for a couple of years. I don't see that much

better drug delivery for the IV stuff. Then, I'm not an LLMD.

The doc is getting paid well. Ask questions.

> >

> > I saw a LLMD for the 1st time in April and began oral abx treatment

> > and the plan was to see how that went and likley go onto IV abx at

>

[Guest guest]

Hi Lori.

Rosner wrote a book called " Top Ten Treatments for Lyme Disease:

Alternative and Conventional Treatments " . He makes a good argument for sticking

with oral abx instead of IV abx.

I'm not an LLMD, and neither is Rosner, but he is a journalist who has

overcome Lyme and its co-infections, so I chose to follow his advice. There are

ways to ease into oral abx without creating aweful herx and side effects. If

you'd like me to tell you some tricks I've learned in dealing with this, please

let know.

Best Wishes to You,

anne

alrightguy123 <alrightguy123@...> wrote:

I'm still rather concerned about an IV line. I wouldn't have one put

into me, but that's just me. If the doc makes a convincing argument

that the thing is safe and can deliver a drastically better than oral

abx would, then so be it. Just looking at the surface, we have to

take some sort of abx for a couple of years. I don't see that much

better drug delivery for the IV stuff. Then, I'm not an LLMD.

The doc is getting paid well. Ask questions.

> >

> > I saw a LLMD for the 1st time in April and began oral abx treatment

> > and the plan was to see how that went and likley go onto IV abx at

>

[Guest guest]

I read IV is easier on system..so this is not true? Please share you info on no

herxing!!! THANKS!!!

Re: [ ] Re: Question regarding changing treatment---Help Please!

Hi Lori.

Rosner wrote a book called " Top Ten Treatments for Lyme Disease:

Alternative and Conventional Treatments " . He makes a good argument for sticking

with oral abx instead of IV abx.

I'm not an LLMD, and neither is Rosner, but he is a journalist who has overcome

Lyme and its co-infections, so I chose to follow his advice. There are ways to

ease into oral abx without creating aweful herx and side effects. If you'd like

me to tell you some tricks I've learned in dealing with this, please let know.

Best Wishes to You,

anne

alrightguy123 <alrightguy123> wrote:

I'm still rather concerned about an IV line. I wouldn't have one put

into me, but that's just me. If the doc makes a convincing argument

that the thing is safe and can deliver a drastically better than oral

abx would, then so be it. Just looking at the surface, we have to

take some sort of abx for a couple of years. I don't see that much

better drug delivery for the IV stuff. Then, I'm not an LLMD.

The doc is getting paid well. Ask questions.

> >

> > I saw a LLMD for the 1st time in April and began oral abx treatment

> > and the plan was to see how that went and likley go onto IV abx at

>

[Guest guest]

Don't recall who asked the question (Lyme brain lol), but yes IV is better

for your system since it does not go directly through your stomach. You

cannot get enough medicine in your brain/nervous system via pills etc, you would

get too sick to your stomach etc. That is not to say that IV antibiotics do

not make you sick to your stomach too, but at least if you take acidophilus to

counteract the effects the medicine is not going through the same system

killing the acidophilus right away. Not sure if I sound like I am making any

sense, but I survived three rounds of IV therapy so far (really bad neuro

Lyme)and am now doing herbs etc. IV therapy is really not as bad as it sounds.

Dagmar

**************Get trade secrets for amazing burgers. Watch " Cooking with

Tyler Florence " on AOL Food.

(http://food.aol.com/tyler-florence?video=4 & ?NCID=aolfod00030000000002)

[Guest guest]

I'm currently on my 2nd month of IV Rocephin 2g per day, and my LLMD says that I

need about 6 more months minimum of IV therapy. I was previously on Minocin

1000mg per day, along with Azithromycin and Malarone for the Babesia. I ended up

relapsing in January after obtaining an oportunistic infection of unknown

etiology which landed me in the hospital for 9 days. I was already suffering

from neuro-lyme with nerve pain, migrating severe joint pain, cardiac

arrhythmias, etc, but it was much worse after my relapse. I began IV therapy

about two months after being released from the hospital. My LLMD actually told

me not to expect to get better overnight, but that I should be getting better

slowly. The IV dose at 2grams daily is actually only half of what is recommended

by Dr. Burrascano and my LLMD may have to increase my dose up to 4 grams daily

to get better control of my Lyme. I am happy to anounce that since I've been on

the IV therapy that my migraines have been very far and few. I had a implanted

central line port put in while I was in the hospital earlier this year due to my

veins already being unviable. Rocephin is one of the safest IV antibiotics that

I'm aware of and being allergic to many meds including a antibiotic called

Macrodantin, I have yet have any adverse effects of IV therapy. My fevers are

also becoming more transient while on IV therapy. I think more antibiotic

therapy is needed to help with the migrating joint and nerve pain. My LL

cardiologist has determined that my cardiac arrhythmias are due to Lyme and is

closely monitoring me. I personally think that IV therapy has started to give me

my life back from the vice grip that Lyme has had on my quality of life since

September 2006. I have many co-existing medical conditions that complicate Lyme

and the treatment, so I personally feel that IV therapy benefits outweigh any

potential risks/adverse effects. I'll be more than happy to share my experience

with anyone that is interested.

Barbara

[ ] Re: Question regarding changing treatment---Help Please!

Don't recall who asked the question (Lyme brain lol), but yes IV is better

for your system since it does not go directly through your stomach. You

cannot get enough medicine in your brain/nervous system via pills etc, you

would

get too sick to your stomach etc. That is not to say that IV antibiotics do

not make you sick to your stomach too, but at least if you take acidophilus to

counteract the effects the medicine is not going through the same system

killing the acidophilus right away. Not sure if I sound like I am making any

sense, but I survived three rounds of IV therapy so far (really bad neuro

Lyme)and am now doing herbs etc. IV therapy is really not as bad as it sounds.

Dagmar

**************Get trade secrets for amazing burgers. Watch " Cooking with

Tyler Florence " on AOL Food.

(http://food.aol.com/tyler-florence?video=4 & ?NCID=aolfod00030000000002)

[Guest guest]

Hi, Mindy.

I've also been told that IV abx is better for some people. If you by-pass the

stomach, that can make a huge difference in the amount of herxing you have to

endure.

But there are herbs , like quercitin, that help cut down on herxing. Also,

hydrogen peroxide or sea salt bathes for thirty minutes a day can help. Large

amounts of vit c, till you get diarhea, can cleanse the organs. Coffee enemas

(under dr. supervision) have helped my friend greatly.

The only reason I haven't tried IV therapy is the cost and the lack of control

in my dosing,

I've discovered that if I take small slivers of oral abx and SLOWLY build up

to the recommended amount, my stomach doesn't revolt and the herx is tolerable.

I also take promethazine to control nausea and vomiting,

Some herxing symptoms are exaggerated by candida overgrowth due to the abx. I

use several drugs and herbs to help control the candida and its herxing effects

also.

I hope that whatever you decide, you'll be feeling better soon. We Lymies

suffer SO MUCH!

Best wishes,

anne

Mindy Hellman <mindysrq@...> wrote:

I read IV is easier on system..so this is not true? Please share you

info on no herxing!!! THANKS!!!

Re: [ ] Re: Question regarding changing treatment---Help Please!

Hi Lori.

Rosner wrote a book called " Top Ten Treatments for Lyme Disease:

Alternative and Conventional Treatments " . He makes a good argument for sticking

with oral abx instead of IV abx.

I'm not an LLMD, and neither is Rosner, but he is a journalist who has overcome

Lyme and its co-infections, so I chose to follow his advice. There are ways to

ease into oral abx without creating aweful herx and side effects. If you'd like

me to tell you some tricks I've learned in dealing with this, please let know.

Best Wishes to You,

anne

alrightguy123 <alrightguy123> wrote:

I'm still rather concerned about an IV line. I wouldn't have one put

into me, but that's just me. If the doc makes a convincing argument

that the thing is safe and can deliver a drastically better than oral

abx would, then so be it. Just looking at the surface, we have to

take some sort of abx for a couple of years. I don't see that much

better drug delivery for the IV stuff. Then, I'm not an LLMD.

The doc is getting paid well. Ask questions.

> >

> > I saw a LLMD for the 1st time in April and began oral abx treatment

> > and the plan was to see how that went and likley go onto IV abx at

>