Re: More IV antibotics or Natural Treatment

[Guest guest]

I'm in the same boat, after two months on rocephin, insurance is cutting me off.

I had a tiny improvement in that time nothing significant...how much did you

improve?

>

> I am testing IGM and IGG positive for Erlichiosis, positive for EBV, CMV,

HPPV6. Global hypoperfusion and white T2 abnormalalities. I've finally been

diagnosed with chronic lyme after maybe 20 years! Unexplained ITP, NK cells (3)

and CFS - 15 years ago!

>

> I've been on antibotics with my LLMD Dr. B (albany) for 1.5 years. I had IV

cef for 5 months and went off due to finances (relapsed 2 weeks after the 5

months). I now have the financial resources to continue IV and my LLMD is

recommending another 6 mths - 1 year of IV cef.

>

> Here is my questions and quandry - for all you chronic lyme patients who have

been on IV for long periods of time (6 mths - 1 year) did it make you better?

And, how fast did time wise did you relapse.

>

> I appreciate all of your help answering this question. It is a very difficult

painstaking decision to make! Not to mention health consequences and the

possible complications!

>

> Please just answer the following 2 questions and suggest recommendations from

your experience.

>

> Time on IV cef or Rocephin?

> How fast did you relapse?

> Would you recommend and do it again?

>

> Sincere Thanks,

>

> - very chronic sufferer

>

[Guest guest]

i have been on orals only for 22months after having lyme for 5-6 years

before treatment.

i am about 90% better and will continue to 2-3 years which i have read is

the average for treatment because of the slow replication of the disease.

On Thu, Oct 14, 2010 at 6:21 AM, c_reinhardt2001 <sunshining@...> wrote:

>

>

> I am testing IGM and IGG positive for Erlichiosis, positive for EBV, CMV,

> HPPV6. Global hypoperfusion and white T2 abnormalalities. I've finally been

> diagnosed with chronic lyme after maybe 20 years! Unexplained ITP, NK cells

> (3) and CFS - 15 years ago!

>

> I've been on antibotics with my LLMD Dr. B (albany) for 1.5 years. I had IV

> cef for 5 months and went off due to finances (relapsed 2 weeks after the 5

> months). I now have the financial resources to continue IV and my LLMD is

> recommending another 6 mths - 1 year of IV cef.

>

> Here is my questions and quandry - for all you chronic lyme patients who

> have been on IV for long periods of time (6 mths - 1 year) did it make you

> better? And, how fast did time wise did you relapse.

>

> I appreciate all of your help answering this question. It is a very

> difficult painstaking decision to make! Not to mention health consequences

> and the possible complications!

>

> Please just answer the following 2 questions and suggest recommendations

> from your experience.

>

> Time on IV cef or Rocephin?

> How fast did you relapse?

> Would you recommend and do it again?

>

> Sincere Thanks,

>

> - very chronic sufferer

>

>

>

[Guest guest]

>

> Please just answer the following 2 questions and suggest recommendations from

your experience.

>

> Time on IV cef or Rocephin?

> How fast did you relapse?

> Would you recommend and do it again?

I'm from Europe where IV treatments longer than about a month are extremely

rare. I had 6 weeks of IV rocephin and one year of orals. I don't think there is

a compelling reason to choose IV over orals, except if you have acute neurologic

symptoms, a very sensitive gut or are allergic to most oral abx.

My 6 weeks of rocephin worked pretty well, but many symptoms (except acute neuro

problems like walking, disorientation, inflammation of the meningues) returned

within weeks. In the end, I saw more benefit from the Buhner herbs than from ABX

treatment - but maybe if I had not done any ABX first, the Buhner herbs would

not have helped (no way to know for sure).

Going through all the scientific literature, I think there is VERY little proof

that IV is better than oral ABX for chronic lyme, when it comes to longterm

outcome of treatment.

[Guest guest]

>

> i am about 90% better and will continue to 2-3 years which i have read is

> the average for treatment because of the slow replication of the disease.

Cyst forms are another argument for longterm treatment, as they seem to have a

lifetime of 1-2 years (after that they no longer seem viable). But there is very

little hard facts.

Difficult to know if it is 2-3 years ABX or 2-3 years of waiting (slow recovery)

that did the job. I know some people who used ABX and have almost fully

recovered now, after a few years without ABX. Maybe it just takes a long time to

rebuild everything that was damaged ...

I also hear from people who are on ABX for 5 or 10 years and still 'relapse'

quickly after they stop taking the ABX.

[Guest guest]

Insurance cut me off Rocephin. I found generic Rocephin at Walgreens

($63/month), bought most of the IV supplies from a neighborhood pharmacy,

and bought the rest of the supplies off the Internet. My cost = $344/month.

Had insurance not cut me off, my 20% share would have been $931/month. I

saved nearly $600 by getting kicked off insurance. I have a nurse come

twice a month to check the PICC line. I've been on Rocephin since 5/24/10.

It has been a miracle drug for me. I was sick 24.5 years before diagnosis.

Val

Re: More IV antibotics or Natural Treatment

Posted by: " laceyinbh "

I'm in the same boat, after two months on rocephin, insurance is cutting me

off.

[Guest guest]

Val...that's amazing, my doctor didn't even know there was a generic Rocephin.

What is the name of the generic??? did you your doc keep prescribing it, and you

just filled it yourself w/o the infusion company?

>

> Insurance cut me off Rocephin. I found generic Rocephin at Walgreens

> ($63/month), bought most of the IV supplies from a neighborhood pharmacy,

> and bought the rest of the supplies off the Internet. My cost = $344/month.

> Had insurance not cut me off, my 20% share would have been $931/month. I

> saved nearly $600 by getting kicked off insurance. I have a nurse come

> twice a month to check the PICC line. I've been on Rocephin since 5/24/10.

> It has been a miracle drug for me. I was sick 24.5 years before diagnosis.

>

> Val

>

>

> Re: More IV antibotics or Natural Treatment

>

>

> Posted by: " laceyinbh "

>

>

>

> I'm in the same boat, after two months on rocephin, insurance is cutting me

> off.

>

>

>

>

>

[Guest guest]

It was Walgreen's pharmacy that found the low cost generic for me. The

generic name is ceftriaxone. I had to buy a $20 Walgreens card to get that

price. I have two Lyme docs. I had to have a local one to RX the PICC line

and I have a main one in CA. The CA one calls the prescriptions in because

Lyme docs in CA are protected by state law and my doc here is not.

BTW, the first 90 days of generic Rocephin cost me about $225. The last

refill cost $188.

I have to go on Medicare on 12/1. Walgreens cannot sell with that $20 card

if I'm on a government program. It may end up that being on Medicare costs

me an extra $1,000 a month for Rocephin. I dread being held hostage by

government.

Val

Re: More IV antibotics or Natural Treatment

Posted by: " laceyinbh "

Val...that's amazing, my doctor didn't even know there was a generic

Rocephin. What is the name of the generic??? did you your doc keep

prescribing it, and you just filled it yourself w/o the infusion company?

[Guest guest]

I think you are right knot_weed. It almost seems to be a regional thing.

Some parts of the country almost always goes with Ivs, others with oral.

www.lyme-resource.com

You can lead a person to a fact, but you can't make them think! -

> [ ] Re: More IV antibotics or Natural Treatment

>

>

>

>

> >

> > Please just answer the following 2 questions and suggest

> recommendations from your experience.

> >

> > Time on IV cef or Rocephin?

> > How fast did you relapse?

> > Would you recommend and do it again?

>

> I'm from Europe where IV treatments longer than about a month

> are extremely rare. I had 6 weeks of IV rocephin and one year

> of orals. I don't think there is a compelling reason to

> choose IV over orals, except if you have acute neurologic

> symptoms, a very sensitive gut or are allergic to most oral abx.

>

> My 6 weeks of rocephin worked pretty well, but many symptoms

> (except acute neuro problems like walking, disorientation,

> inflammation of the meningues) returned within weeks. In the

> end, I saw more benefit from the Buhner herbs than from ABX

> treatment - but maybe if I had not done any ABX first, the

> Buhner herbs would not have helped (no way to know for sure).

>

> Going through all the scientific literature, I think there is

> VERY little proof that IV is better than oral ABX for chronic

> lyme, when it comes to longterm outcome of treatment.

>

>

>

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

>

> Buy Healing Lyme: Natural Healing And Prevention of Lyme

> Borreliosis And Its Coinfections by Buhner at one of

> these locations:

> http://tinyurl.com/3bgm5d

>

>

[Guest guest]

I have read cysts were viable over 4+ years. So that's why so many relapse

when they stopped their protocols. It's a long haul treatment!

> [ ] Re: More IV antibotics or Natural Treatment

>

>

>

>

> >

>

> > i am about 90% better and will continue to 2-3 years which i have

> > read is the average for treatment because of the slow

> replication of the disease.

>

>

> Cyst forms are another argument for longterm treatment, as

> they seem to have a lifetime of 1-2 years (after that they no

> longer seem viable). But there is very little hard facts.

>

> Difficult to know if it is 2-3 years ABX or 2-3 years of

> waiting (slow recovery) that did the job. I know some people

> who used ABX and have almost fully recovered now, after a few

> years without ABX. Maybe it just takes a long time to rebuild

> everything that was damaged ...

>

> I also hear from people who are on ABX for 5 or 10 years and

> still 'relapse' quickly after they stop taking the ABX.

>

>

>

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

>

> Buy Healing Lyme: Natural Healing And Prevention of Lyme

> Borreliosis And Its Coinfections by Buhner at one of

> these locations:

> http://tinyurl.com/3bgm5d

>

>