LymeNet Flash: Adequate Treatment for Lymes?

This is topic Adequate Treatment for Lymes? in forum Medical Questions at LymeNet Flash.

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Posted by Damaged (Member # 7553) on :

I got lymes in 1979 and went 4 years with it untreated.. then it was treated incorrectly for another 6. Finally in 1989 I had 7 weeks of IV Rochephin. Recently I have been really tired, WBC's are very high and despite prednisone I have very swollen fingers and ankle joints. The Rheumatologist I went to says that every study he has seen states that the last treatment I had was adequate to wipe out lymes. I'm so frustrated at the moment with this.. has anyone been in a similar situation? What can I do?

Posted by ALSLYME (Member # 6721) on :

well maybe you should ask your rheumatologist if he has ever been bitten by a bug twice in ten years, maybe he thinks once you have been bitten 1x you can never be bitten again, and maybe he believes in santa clause too! go see an LLMD!

Posted by Melanie Reber (Member # 3707) on :

Hello Damaged,

Welcome to LymeNet!

Well, it looks like the first thing that you really should do is to seek a doctor that knows what they are actually doing! Lyme is a highly misunderstood disease, and requires the attention of a specialist for an adequate evaluation and treatment plan.

If you have had this infection since 1979, it is well entrenched by now, and will require long-term treatment. There is NO allotted time period that any doctor can point to and say'' you should be cured by now''...it just isn't possible.

Think of it this way...what if you were a cancer patient that had undergone one round of chemotherapy. Do you think the oncologist would suggest that you were ``cured'' beyond any doubt without looking at bloodwork and symptomology? Of course not. Neither would a LLMD or Lyme Literate doctor try to say that you were cured with one round of antibiotics, no matter what they were.

Go to the ``seeking a doctor'' section, and request information in your area. Be sure to leave a contact email so that someone can get back with you.

Prednisone...as in steroids? A HUGE no-no for lyme. It will suppress the immune system, and with lyme, your immune system is already suppressed, please, consider stopping this ASAP.

Here are a few new member links to get you started with information. You have been dealing with this for far too long to not try and become better informed so you can become your own best advocate for proper healthcare from now on.

Feel free to keep asking questions, and we will try our best to help.

Melanie

LymeNet Links for new members: http://flash.lymenet.org/ubb/Forum1/HTML/009342.html

Dr. Joseph J. Burrascano's Guidelines: http://www.ilads.org/burrascano_1102.html

Rose's 15 Facts for Newcomers: http://flash.lymenet.org/ubb/Forum1/HTML/011977.html

Symptom Check List: http://flash.lymenet.org/ubb/Forum1/HTML/021063.html

Abbreviations for Lyme-speak: http://flash.lymenet.org/ubb/Forum1/HTML/020494.html

Making the most of your LLMD visit: http://flash.lymenet.org/ubb/Forum1/HTML/020605.html

Camp A and Camp B: http://flash.lymenet.org/ubb/Forum1/HTML/021395.html

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Posted by Damaged (Member # 7553) on :

does anyone know of a LLMD in southwestern Virginia?

Posted by janet thomas (Member # 7122) on :

WBCs are very high you said- do you know the number? Normal is generally 5-10 (thousand/mm3)

Often, AFAIK, WBCs are normal in Lyme, maybe even lowish-anyone else know about this?

Tell us more, and BTW, your rheumy is poorly informed.

[This message has been edited by janet thomas (edited 02 July 2005).]

Posted by robi (Member # 5547) on :

email me about good llmd in VA..... I know one in SE VA.

robi

Posted by Damaged (Member # 7553) on :

Thanks everyone for your input..
WBC's are at 16,000 despite a week of augmentin and a week of steroids. Also the sed rate was borderline positive.. so he isn't considering that either. They did a lymes profile and it shows I do have some antibodies to lymes. The Dr. I saw said that only shows antibodies and not an active infection. I was diagnosed and treated in New Jersey and I live in Virginia now.

The ironic thing was each time I was sick I was told this same thing by doctors.. cant be lymes you have been treated already.. its your imagination. I've had spinal taps because of my headaches and memory loss..

after having the infection for 4 years I had 6 IM shots of penicillin and was declared cured.. still had problems and a few years later I had 3 weeks of IV penicillin and declared cured. I got retreated as they researched and learned more about lymes. Then in 1989 I had the IV antibiotics for 7 weeks. The doctor wanted to go longer but it was too much on my system.

I am off the prednisone now and the doctor is supposed to redraw blood on tuesday.

Posted by Damaged (Member # 7553) on :

I forgot.. this doctor says I have Fibromyalgia... and he told me antibiotics wont help me. And I realized when I saw him he has no idea about Lymes.. I probably know more than he does.

[This message has been edited by Damaged (edited 02 July 2005).]

Posted by docdave130 on :

fibromyalgia is a symptom of a disease not a seperate disease process.
sounds like relapse to me .
i was undiagnosied for 7 years and have relapsed 4 times in 5 years.
need new blood workup for lyme and coinfections amay be babs which was not treated from your information given

Posted by janet thomas (Member # 7122) on :

Did you know tha steroids are CONTRAINDICATED with Lyme disease?

Does your doctor?

You need a Lyme doctor.

Chronic Lyme may take years to treat.

It's best if you spend some time reading the info from the links.