I need information please?

I have had Lyme now for 2.5 years. Does anyone know what the rate of success is for IV antibiotics is? My joints ache, and I have to take pain meds. just to get through the day if I do anything at all. Has anyone who reads this ever tried the year long IV treatment? I had to give up my construction business and I want to find a good doctor preferbly around Clarksville, TN or Western KY. Thank for any help you can give to me.

[JackieCalifornia]

Welcome, but sorry to hear of your situation.  

Have you been diagnosed with Lyme, but are unable to get any treatment from the diagnosing MD?

[gtw_1]

Yes I have been diagnosed with Lyme. My family MD gave me a 10 day supply of antibiotics. I hurt a lot mostly joint pain and I seem to have a lot of muscle soreness or something like that. I havent heard anyone discuss this portion of Lyme. When I first became ill, My wife who is an R.N., actually thought I was going to die because I was so sick from vomiting, a migraine, shaking and pain in my body. I had a bulls eyed bite around my L shoulder that was about 10 " in circumference. I lost my business because of this and now I feel like a hermit! I want to find a doctor that will take an advanced patient as myself. I scheduled an appointment with a Dr, Chrispt in Springfield, MO but after receiving the stack of pages of info and charges that he would only take pay up front, I realized I had not that kind of money. I was told by a doctor that knows him, that he has done some remarkable things.

[JackieCalifornia]

[Sorry, that message ended itself.]

Some ideas:

(1)  If you go to lymediseaseassociation [dot] org, there is a referral page there where you can go to located an LLMD ['Lyme Literate Medical Doctor', meaning a regular doctor who has a special interest in diagnosing and treating Lyme and coinfections.]

(2)  Go to w w w [dot] lymenet [dot] org for a referral

(3)  Go to w w w [dot] tn-lyme [dot] org, which calls itself 'Lyme Disease Network of Middle Tennessee' and has a phone number to call and an email address of lymetn [at] comcast [dot] net.  It lists two upcoming events, so that says they are probably currently active and might be able to give you some information:  

Sat, May 9, 2009: Under Our Skin
Under Our Skin will be shown at the Mount Juliet Community Center 1075 Charlie Daniels Parkway. The movie is free and will start at 5:30pm. Pat Smith, president of the LDA will be a guest speaker!

Mon, May 11, 2009: May Meeting
Our monthly meeting will May 11th, 6:30 PM at Belmont Church in Asaph's Chamber

If all of that doesn't work, let us know and we'll try something else.  Let us know how you do.

Best wishes to you --

[gtw_1]

Thanks a bunch.  Greg

[JackieCalifornia]

Yes, I have heard of Dr Crist and one of his patients posts here sometimes.  Some Lyme doctors want cash payment so they don't have to hassle with the insurance companies, and frankly if you can scrape the money together, it might be worth it.  My LLMD takes only cash, no insurance.

I hear you when you say you were so sick you thought you were going to die.  Me too.

Symptoms vary by person and from time to time in the same person, but your symptoms don't sound that different from what others report here, sorry to say.

Ten days of antibiotics is what some doctors prescribe, relying on what other (LLMD)doctors think is inadequate.  The good news is that not everyone, even advanced cases and very ill, seems to need intravenous drugs -- quite a few of us here are on oral antibiotics even after several years of having been ill and not treated or not fully treated.  It's also possible you could have other infections that sometimes come with Lyme, which just make the symptoms worse -- that happened to me too.  There is testing that can be done to detect those as well.

Many of us here can't work full time while so ill, and it does get very isolating, so that's understandable.  Nobody here is a doctor, so this is all just a collection of our experiences, but it sounds like you are going through what many of us have.  The important thing is to keep going and keep trying to get well -- as hard as that is.  You are lucky to have your wife there to help you, tho this is doubtless hard on her too.

Like you, I was sick for quite a while before I was diagnosed, and after antibiotic treatment (still ongoing) I am so much better and have high hopes of being fully well eventually.  I'm pretty stubborn that way, which is a good thing when up against this miserable disease.

[JackieCalifornia]

You mention muscle soreness -- that is common, and I have it too.  My joints have not been as bad as some people's, but that's certainly a common symptoms as well.

You also mention IV treatment -- that seems to be less common these days now that the drs are figuring out how to give effective oral antibiotics, so you may be able to do the pills instead ... I understand the IV is more expensive anyway and some drs are reluctant to do IV because of the risk of infection.

There is a website called www [dot] ilads [dot] org that is the group of MDs that believes extended treatment may be advisable.  They have some interesting information there about treatments and so on if you want to read up on it.  

The good news and the bad news, there are a lot of us out here.  You're not alone.  Take care.

[patsy10]

Welcome to MedHelp.  Looks like you already got  very good information from Jackie.  I don't know of  anyone myself who has gotten IV treatment that long.  I know a couple  of people who have gotten 6-8 weeks of IV Rocephin though.  You may not need IV treatment but only a  doctor could tell you for sure. Oral antibiotics may work for you.  They work for me and I have been sick a very long time.  Ten days would not be enough.  I noticed no improvement until 4 months into treatment.

I think an appt. with a LLMD would be in order.  This way you can get a professional evaluation from someone who specializes in this and can prescribe the best treatment whether it be orals or IV.  Unfortunately many lyme doctors do not take insurance and it can be quite costly.

[Hope75]

I would go to the LLMD.  Ask the LLMD if they participate with Care Credit - you may be able to get low to no interest $ for treatment this way.  It's worth asking anyway.  I believe someone mentioned to me that you can submit to your insurance yourself and keep your fingers crossed - not sure if this is true.

Welcome to this forum.  They are very supportive here and will be an integral part of your journey thru lyme - they have been for me.  I, too, am trying to decide on IV Rocephin vs. oral abx.

[JackieCalifornia]

I've not heard about Care Credit before -- I'll see if I can find it on line.  Sounds like a good resource.

(My LLMD doesn't accept insurance but provides copies of the bills for me to submit to my insurance co. for any reimbursement -- it takes the burden off the dr's office to file with the insurance company and then turn around and bill the balance to the patient.  I'm told that insurance companies drag their feet paying drs even longer than they drag their feet in reimbursing patients (there may be a law that applies to patient reimbursement) -- sometimes up to 6 months, another doctor told me.
When I submit the paid dr bill to my insurance company, then maybe the reimburse, maybe they don't -- it's up to me to argue with them.)

[gtw_1]

I would like to thank each of you who took the time to answer my question(s). It is reassuring to know that there are others out there who know how I feel. Thanks again and GodSpeed!

[cindy903]

People love that Dr. Crist on other forums ...in S[pringfield, MO...

I had no idea you had to be wealthy.

You could try some cat's claw if you cannot find an llmd that takes insurance or plastic.

Geez louise....this is all so unfair!