iv

[Guest guest]

I have chronic Lyme. Although, I still hope to get better. I was on iv

Rocephin for 1 month. While on it, I felt really good. However, I have been off

it

for almost two months and my syptoms have crept back. The Dr. said it may take

up to 18 months to feel much better. I don't know if that is true. I suffer

from a lot of neurological symptoms and he said these take a long time to heal.

Do you have any specific questions. HOpe this helps. Laynie

[Guest guest]

If you have chronic lyme and have used iv would you write and tell me about

it? Thank You--Anne

[Guest guest]

Hello Anne,

I was on IV Rocephin for 8 months.........and didn't have any more symptoms

after that, until I was reinfected by another Tick.

I had tried many orals, bicillin injections, etc.......but didn't have

success until the IV.

I really think it all depends on the strain or strains of the lyme bacteria

that you have in your body. In my case, my particular strain was knocked

out by the IV Rocephin..........I was one of the lucky ones.

I really think it is hit or miss...........certain bacterial strains react

differently to different abx..........that's why it is so hard to kill off

this bacteria.

Until gov. starts funding studies that can first distinguish all the

different strains, and then take those strains and drop different abx on

them and we can finally say yes.........you have this strain or strains, and

here is the abx that works best on killing it......we will continue to

suffer.

Conniek

[Guest guest]

To Millie (had long term CNS Lyme) and Anne - Amen to Millie's email....I am

convinced by emailing and talking to people that if you have neuro sx, one

needs IV at pretty decent doses. I've said here before that my daughter is

on 4 g rocephin/day for 4 days a week and flagyl for the other 3. Doc feels

strongly in the latest info which is that babesia is often the " bad boy "

here and needs to be treated. When done so, the neuro stuff improves

greatly. So, Jill will do the Rocephin/Flagyl for a month then add Mepron

(1 bottle-about 21 days). Then off the Mepron for a month but still on the

Roc/Flagyl. Then go for another 21 day bottle of Mepron. If herxes happen

(he says less likely on Rocephin than the orals), then you back off the med

for a day or two...then back on. Corroborated by other patients.

Seems docs use doxy, doxy...but supposedly zithro tends to cause fewer

herxes. That's what I heard.

Hope this helps. Good luck!!

Re: [ ] iv

Anne,

I have CNSLyme, Late Lyme, Spinal Column Lyme. I went undiagnosed 10-years.

The Infection was heavy and allowed to Infect a long time. My first

treatment was a GP who after my begging him to treat the symptoms for three

years. I don't test positive by blood only Urine.

So in 8/98 he put me on oral Doxy. 200mg. I pushed until he raised it to

400mg high dose for Doxy. It got me out of a 10-year stay in bed. However

it did not touch the CNS. I had Lyme Fog real bad. I could not process

information. Especially under stress. I was representing myself in a

Lawsuit for Divorce. My mind would not function. I called it sending my

brain on a Word-search.

Everyone else would be on to another topic and I'd be there trying to think

of what I was saying and why it meant anything anyway. I lost in the

courts. Two homes and a husband.

Lucky me I came across some Info at our Local Library about IgenX lab and

their Reverse Western Blot. It tests with Urine not blood. I came back

very positive and very sick.

After Another two-years of begging a new Doctor I went on IV Rocephin.

Within a couple of weeks I noticed my mind clearing. I started IV in

Jan/03. When you have the CNS Lyme it is real hard to read and retain

information. So I had been given printouts from a Local Chiropractor who

was dating a woman with Lyme. He was positive I had it. But what do

Chiropractors know.

It was March 1, 2003. I got out of bed and starting walking. At some point

I felt like a page turned in a book. My brain was back. I absolutely

believe the only way to treat Long Term Late Lyme is IV.

I now read tons. And learn more and more about the Disease and It's

devastating effects. I can Identify everyone of the symptoms as what I

suffered. However I believe beyond the Chronic Pain, Chronic Fatigue etc.

The most Important part is having my mind back.

I now know taking Doxy oral at that high was not a good thing. Literature

recommends IV even for Doxy. Most important is IV is the way to go if you

have the Lyme Fog problems. After a year and a half of orals I have finally

been Re diagnosed by IgeneX. Just as positive as the other test. Again on

IV I am hoping the meds will cross over into my Spinal Column Fluid and help

with the pain caused by the infeciton in the Spine.

cat777spikenard <cat777spikenard@...> wrote:

If you have chronic lyme and have used iv would you write and tell me about

it? Thank You--Anne

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