Does anyone see this Dr. and can tell
me what IV abx he prescribes for his
8 week treatment? Does he follow up
with any oral abx or is it just 8 weeks
of the IV abx?

Here is the quote from the article:

"Lionetti estimates he has treated over
1,000 late-stage Lyme patients. For the
majority of those, he prescribes a maximum
of eight weeks of intravenous antibiotic
therapy and estimates the success rate by
treating with such duration is "about
eighty to ninety percent."

Here is the link to the article: http://www.lyme.org/lymelight/trtcontrov.html

Their success was based on finding DNA via PCR testing post treatment. At 4 months post IV I was symptomatic but had not had a positive PCR. I changed doctor's. I probably was considered a "success" by DR L and his group. At that point they did not treat with orals post IV.

I was very thankful for the treatment I did receive, it did reduce my symptoms. I just wish I hadn't had the 5 month break in treatment between IV and orals.

I was told that he does not think oral meds alone are effective. Therefore, no orals were given after the 8 weeks of IV's.....treatment comes to a screeching halt(symptoms or not)

Hi Tom

If treatment is considered a success once the patient has a negative PCR, this would indicate a problem in my book. And 8 weeks of anything seems a bit problematic in my book also. Maybe if one saw the tick and started ABX within 24 hours........maybe.....

There is NO test that can show there is no more Bb in the body, NONE!

The PCR is a wonderful test when we can get a positive. Yes, it is 100% accurate BUT only 20 to 30% sensitive. In other words it's like trying to catch a pollywog in an Olympic swimming pool. Nobody with a negative PCR should be denied treatment!

Dr B's Guidelines state the patient should be free of symptoms for at least two, maybe three months before stopping treatment. Most LLMD's are pretty cautious with their promises given the unknowns with this disease and the co-infections. Each of is soooo different and a lot of it is trial and error. Wouldn't it be great to have a cookbook formula for this d#@% disease? This board would not exist!

That's my take.....I have no experience with this doc.

Healing thoughts......lightfoot

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C O L O R A D O * S U P P O R T * S Y S T E M
[email protected]

Yeesh.

The boards have to be straightened out, or most Docs LL or otherwise will not be able to treat Lyme & co-infections to efficacy and still practice.

Mo

I guess once you run in to these type of problems, you have to err on the side of caution. I think he is very knowledgable regarding lyme.

Unfortunately, I think more and more dr's are going to have to follow his pursuit. I guess a limited treatment is better than no treatment. Hopefully better testing will be developed, and the LLMD's will be able to practice medicine without the scrutiny they undergo now.

It was a very user friendly place to get and manage IV compared to many of the experiences I have heard from others on this board. They have an office in Chadds Ford now I would certainly recommend them for someone who needed to do IV.

Our current llmd has felt pressure from med boards and has had to restructure how he manges the business end of treatment. sad.

I know of three people treated by Dr. L that were pronounced cured only to get even sicker after the IV stopped......regarless of how sick they were, treatment was denied until a positive PCR came in.

This is like putting 10 tennis balls in a swimming pool and getting a bucket while blindfolded and trying to capture a tennis ball in your bucket of water. You could practically empty the pool and still not be lucky enough to get a tennis ball in your bucket. PCR works under the same principle.

Clincal Dx. does not work at Dr. L's office, everyone is "cured" after 8 weeks of IV until a positive PCR say you are not regardless of how ill you are.

Orals are not used after you are cured in 8 weeks..................I saw three very sick patients that were labeled cured who went on to find other LLMD's. The whole time you are waiting to get positive PCR testing to get treated....you could actually be clinically Dx and treated by another LLMD.

Many people are thrilled because he does accept medicare payment.

Instead of getting mad at docs who are forced into this position, get mad at the people who are doing this to us. And then become an activist.

It doesn't do much good to say that a doc should clinically diagnose, when the truth of the matter is that anyone who can't show a positive test for patients may lose his or her license.

Dr. L doesn't even see most of the patients

there. I almost always saw Dr. D., or Dr. S.

The treatments are pretty much like what I've

read everyone else has done as far as the IV.

Dr. S. never even looked for co-infections

that I'm aware of, But Dr. D. did. She

Seems to be really up to date on everything

and is pretty agressive as far as insurance

will allow. From what I gathered, If you

wanted orals, they would give them if you

asked, but they didn't suggest them.

Next... they require Monthly PCR's for a

year post-treatment. They must all come back

neg. for you to get the all-clear. (I never

made it farther than about 3-4 months clean.

I am however suspicious of the money aspect

there. As I was awaiting an insurance

approval for yet another 56+ day run of IVs

one of the workers mentioned that it would

be a good thing. The reason surprised me!

They stated that it would be helpful to

THEM because they needed the money.

Don't get me wrong... I did have a pos.

test result. ??however, they seem to

ONLY use MDL for PCR results and I did see

Dr. L. having something to do with that

particular lab itself. I saw it on the MDL

site. Anyone with more info on this??

Finally, Last try on IV, rejected so

they tried orals after I requested them.

They made me too sick to continue treatment

so I left a message with the office. NEVER

got a response. Basically, I told the Dr.

I had stopped the therapy. They knew I was

still sick...and now was off therapy...and

they left me hanging. They are very

difficult to deal with as far as sharing

records with ANY other MD's. (It's like

pulling teeth for the other MD's!!)

Another kicker...last time I was to start

treatment, they stapled a credit application

to the back of the therapy instructions!!

Well, There's the "straight dope" on that.

At least all I know of it. SSL, but I

wanted anyone interested to have a little

Nothing wrong with a doc sticking with one lab, as, scientifically, this helps with the
validity, accuracy, and reliability of tests, and their development; thusly, and hence better able to meet challenges on these bases.

You minimize variability between labs.

Just addressing one aspect of testing and diagnosis, not any non-medical and legal challenges.

They also know how to maximize the free drug program, which is also a good thing. All the IV supplies were included in the weekly office visit, for me anyway. I don't know how it worked for insurance patients, but no one was keeping a record of the supplies used, just the drugs. They were very strict about coming in weekly to get checked.

My understanding is that they do do orals, short term after IV now. I was told this by another former patient, so I don't know this for sure.

We have to remember that 3 years ago IV rocephin was still thought to be the best and only course of treatment for long term lyme. The thinking was just turning while I was being treated.

quote:

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Originally posted by tom63376:
Wow.. just look at all the trouble I
caused with this little post...

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No trouble at all, tom. You asked a question and you got it answered. That's a good thing.