LymeNet Flash: daughter is much worse after rocephin is this normal?

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Posted by momindeep (Member # 7618) on :

Just wondering if a person can get really bad with symptoms after treatment? My daughter is having terrible pain...symptoms she experienced years ago, but not for awhile.

She was suffering from the terrible psych things...that has eased up a lot, but now symptoms that she hasn't had in years are back full force...a week after she quit abx.

Just wondering.

Posted by ticktox (Member # 6739) on :

The fact that symptoms have resurfaced so soon after stopping the treatment is a clear sign that your daughter still has an active infection. Relapse is very common with Lyme and occurs frequently following rocephin. How long was she on rocephin? My daughter did it for 7 months and suffered a complete relapse within 9 months following treatment. The relapse occurred in spite of her being on oral antibiotics for the entire period following the IV.

The Borrelia bacteria have tremendous survival characteristics. The fact that they are able to convert to a cystic form allows them to evade the immune system as well as survive the antibiotic treatment. The IV rocephin is effective against the spirochetes but is unable to do much against the cysts and L-forms. Once you stop the treatment, the bacteria can and will revert back to the spirochetal form causing relapse of symptoms.

Your daughter needs to go back on multiple antibiotics that can go after all forms of the bacteria. It is good that your daughter's neuropsych symptoms dissipated with the rocephin but beware because they often return. You did not indicate whether or not your daughter is being treated by a LLMD. If not, she should be. An LLMD will know how to proceed from here. Coinfections must also be considered.

Get your daughter back on abx ASAP. You want her treated until she is totally symptom free for several months. Know that symptoms equate to active infection. Don't let any doctor tell you otherwise.

I wish you well with your daughter. No child should have to endure this disease.

Posted by valymemom (Member # 7076) on :

ticktox

What organization of thoughts. I am copying this to remember when my younger son and I are on abx at the same time as my chronic son.

Posted by Lymetoo (Member # 743) on :

quote:
Originally posted by ticktox:
The IV rocephin is effective against the spirochetes but is unable to do much against the cysts and L-forms. Once you stop the treatment, the bacteria can and will revert back to the spirochetal form causing relapse of symptoms.

Absolutely correct!! Please find a dr who knows how to treat this until her symptoms are cleared.

She MUST follow up the Roc IV with cystbusters [like flagyl] and other oral antibiotics until her symptoms are gone for several months.

PLEASE!

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Do not take anything I say as medical advice. I am not a doctor, but I DID stay at a Holiday Inn Express!
oops!
Lymetutu

Posted by lla2 (Member # 2364) on :

it's very common after you start treating the lyme very aggressively like youre doing with the iv rocephin to suddenly see a coinfetion pop up..and the fact that her psych stuff is popping up leads me to think this may be happening...

jmo, but psych stuff is classic bartonella, as it invades the limbic system of hte brain,a nd dr. jones says is why so many kids get psych problems with it, like rage, anger, psychosis , depression, ocd behaviors, anxiety etc....

so if the psych stuff is ocming out you may want to let your llmd know , because many llmds believe that the lyme won't go away until you treat the coinfections, or at LEAST treat it at the same time as the lyme...

hope this helps...

lisa