Good Drug combinations for Lyme?

[Kimflow]

Hi,

 

After PANDAS diagnosis with multiple antibiotics working for 7 days and then failing, labcorp positive for 41 and 66, CD 57 of 24, igenex pending, tonsillectomy causing another bad flare, IVIG #1 9 day ago, PANDAS still here. Now ready to go back and focus on Lyme treatment as it seems that Lyme may be the root cause of much of the issues....need to figure out what drug combination is going to work.

 

All the "cillins" in the beginning showed initial improvement for 7 days so we know that the "cillins" work to a degree. Editing to add in the Keflex also worked for 7 days so I believe that is a cephalosporin.

 

Afer all those failures though, Dr. L prescribed 3 weeks of clindamycin followed by 2 weeks of rifampin. This seemed to really take down the pandas symptoms by the end of the rifampin. However, was it just the 2 1/2 months of various antibiotics that it finally settled and not totally related to that being a magic combination???

 

Tonsiillectomy caused new flare. Rifampin did not seem to help this time at all. Then we went to augmentin which immediately stopped in it's tracks one ocd anxiety pattern so we know that augmentin works for sure to some degree.

 

I also know that zithromax while it did not prevent strep reinfection, it did seem to modulate immune system.

The current augmentin/clindamycin is not working well. He cannot take minocycline/tetracycline due to forming teeth.

 

So in summary, we have zithromax and augmentin are for sure helpful. So now what.....

Maybe to keep augmentin as it clearly is a winner, put back in the zithromax. If you add the 3rd antibiotic, what comes to mind? mayb Batrim? I have a friend whose son is doing well on Augmentin, Minocycline and Bactrim.

 

Also, we were supposed to rotate in 1 week of alinia per LLMD but that was postponed as we did the IVIG to try and stop the PANDAS.

So I guess we could go back to alinia rotation plan as well as when is the right time to address biofilms? After some of the lyme load has been cleared?

 

Please if you can provide any thoughts/experiences, I would appreciate it. We see LLMD Monday. Thanks.

Edited July 20, 2012 by Kimflow

[rowingmom]

For DD10 penicillin intially given for strep (before lyme/bart diagnosis) decreased PANDAS symptoms for 7 to 10 days. After that the PANDAS symptoms returned while on Penicillin.

 

After lyme/bart diagnosis, biaxin (she had an allergic to bactrim) decreased pain, anxiety attacks, tingling extemeties, hot flashes, ADHD, urinary frequency, but not motor/vocal tics.

 

The addition of rifampin (150mg BID) to the biaxin (250mg BID) resolved ticcing and other symptoms after about 1 month.

 

After 3 months of biaxin/rifampin, rifampin was discontinued. Biaxin/A-Bart/A-L (without rifampin) resulted in a return of most symptoms, especially motor/vocal ticcing after 2 months.

 

Rifampin was restarted and all symptoms were again better with biaxin/rifampin/A-Bart/A-L.

 

3 months later biaxin was discontinued, rifampin and tindamax were pulsed (3 days tindamax (250mg BID)/4 days rifampin (150mg BID) with continuous A-Bart/A/L. This resulted in a return of motor/vocal ticcing and ADHD after 1 month.

 

Biaxin was added back daily (250mg BID) and symptoms are again slowly clearing up after 1 month. Whether the return of symptoms with the discontinuation of biaxin and the addition of tindamax were due to a herx from the tindamax or the removal of biaxin, I am not sure. We have been addressing biofilms since day one.

Edited July 20, 2012 by rowingmom

[red]

Hi,

 

After PANDAS diagnosis with multiple antibiotics working for 7 days and then failing, labcorp positive for 41 and 66, CD 57 of 24, igenex pending, tonsillectomy causing another bad flare, IVIG #1 9 day ago, PANDAS still here. Now ready to go back and focus on Lyme treatment as it seems that Lyme may be the root cause of much of the issues....need to figure out what drug combination is going to work.

 

All the "cillins" in the beginning showed initial improvement for 7 days so we know that the "cillins" work to a degree. Editing to add in the Keflex also worked for 7 days so I believe that is a cephalosporin.

 

Afer all those failures though, Dr. L prescribed 3 weeks of clindamycin followed by 2 weeks of rifampin. This seemed to really take down the pandas symptoms by the end of the rifampin. However, was it just the 2 1/2 months of various antibiotics that it finally settled and not totally related to that being a magic combination???

 

Tonsiillectomy caused new flare. Rifampin did not seem to help this time at all. Then we went to augmentin which immediately stopped in it's tracks one ocd anxiety pattern so we know that augmentin works for sure to some degree.

 

I also know that zithromax while it did not prevent strep reinfection, it did seem to modulate immune system.

The current augmentin/clindamycin is not working well. He cannot take minocycline/tetracycline due to forming teeth.

 

So in summary, we have zithromax and augmentin are for sure helpful. So now what.....

Maybe to keep augmentin as it clearly is a winner, put back in the zithromax. If you add the 3rd antibiotic, what comes to mind? mayb Batrim? I have a friend whose son is doing well on Augmentin, Minocycline and Bactrim.

 

Also, we were supposed to rotate in 1 week of alinia per LLMD but that was postponed as we did the IVIG to try and stop the PANDAS.

So I guess we could go back to alinia rotation plan as well as when is the right time to address biofilms? After some of the lyme load has been cleared?

 

Please if you can provide any thoughts/experiences, I would appreciate it. We see LLMD Monday. Thanks.

I am on azithro and augmentin (+pulsing low doses of rifampin) for bart. Adding septra should be done with caution as septra can have significant side effects depending on the individual's metabolism. You might want to consider starting pediatric doses. I found septra very hard to tolerate at standard adult does

[JuliaFaith]

You can see under my post "First Visit to Lyme Doctor (ND)" that we started biofilm busting immediately when starting treatment. Good question!

[sf_mom]

We started biofilm treatment 5 months into Lyme Treatment. We have continuously treated biofilms with a rotation of protocols and are at the two year mark for treating Lyme et al for older DS.

[red]

We started biofilm treatment 5 months into Lyme Treatment. We have continuously treated biofilms with a rotation of protocols and are at the two year mark for treating Lyme et al for older DS.

Biofilms are extremely difficult to eradicate as this article in Science Daily points out http://www.sciencedaily.com/releases/2012/07/120712144747.htm

"Bacteria are not loners". "While single bacteria may be susceptible to antibiotics, the films can be 1,000 times more resistant and most can only be removed surgically".

[SSS]

I currently take Bolouke for biofilm, and have some Klaire Interphase Plus here, to give a try in the next few weeks.

I think the Bolouke helps the antibiotics penetrate deeper.

You could ask your LLMD about it-

Are you doing things for detox?

Hard with a PANS child, I know.

Edited July 21, 2012 by S & S