feeling down

[eljay1]

It's been quite awhile since I have posted. My son is now turning 8 and has had a PANS/Lyme dx for 3 1/2 years. We have done multiple ivigs which have helped tremendously. He has been on zith with Rifampin and we just recently switched back to Bactrim. We are at the end of our resources financially, so we are unable to continue with ivigs. The Rifampin seemed to be losing its effect, so we turned back to Bactrim (which use to be effective). We are pretty sure he has been battling Bartonella, and it just won't let up. Alot of his symptoms are returning--emotional breakdowns, OCD, more tics than usual, etc. I feel so sad, because he was doing really well for the last 6 months or so. At a loss... BTW, we are seeing both a Lyme and Pandas specialist, but live out of state. Can't afford more phone consults, although we have one more scheduled with Lyme doc in 2 wks. Any thoughts???

[Kathy4Him]

I am so sorry! It is hard enough to go thru this then add in the expense of treatment and it is overwhelming.

 

I want to share the approach our Dr, a Rheumatologist is taking. He treats autoimmune illnesses all the time. He has thoroughly researched Pandas/Pans and feels he has chosen a good treatment plan. I might add his wife is a Chemotherapy Pharmacist.

 

My son is 23 so a bit older than most, we have been dealing with this for 4 1/2 yrs but even as a youngster had multiple streps/sinus infections.

 

So treatment is this:

 

Cellcept...an immunosuppressant 500mg 1st week 1000mg 2nd week 1500 3rd week and finally 2000 mg 4th week. This will continue for at least 90 days

 

Prednisone 60 mg 1st week 40 mg 2nd week 20 mg 3rd week 10 4th week and finally 5 mg for the remainder of 90 days

 

zithromax 250 mg everyday (he is allergic to penicillin, augmentin and keflex)

 

The goal is to suppress his immune system so that it will stop making bad antibodies and reset.

 

He also recommended IVIG one high dose to be spread over 5 days but so far our son is refusing because of the "donor" antibodies.

 

The Dr. believes treatment may work without it. We have also consulted with another Dr. Internist and medical teaching Dr. and he agrees with this treatment.

 

I say all of this to tell you the meds cost less than $125 for 90 days.

 

It is slow, it is risky, he will have labs done every 2 weeks because of the cellcept but if it works it could help so many families who cannot afford ivig.

 

Prayers for your family!

[3boysmom]

Just a thought...have yuo checked for yeast? We were in a good spot and things took a turn for the worst, the old antibiotics that used to do the trick no longer helped....discovered yeast (candida globrada) treating the yeast did the trick to turn things back around...we'll see....

 

Linda

[LNN]

Eljay1 - when you switched off rifampin and back to bactrim, was it because he was stalled in his progress or because his symptoms were returning/escalating? Did the bactrim bring back new symptoms or just continue the slide that had started while still on the rifampin? Trying to understand if this looks like neither abx is working or if it looks like a herx from switching back to the bactrim...

 

I would do 2/day motrin and look into using something like alpha lipoic acid or resveratrol to help the body produce glutathione (for detox). My son's tics seemed to return after a long hiatus only when we killed lyme faster than he could handle (dying spirochetes release toxins that were a tic trigger for him). You could also talk to your LLMD about using tryptophan or 5-HTP to help with the anxiety/OCD and maybe discuss pulsing his abx to give his body a chance to detox between doses.

 

I think looking into yeast is a good idea. We introduced garlic (make sure you get the odorless variety). Both kids blipped with a few days of increased silliness/hyperness but then settled down. We now give one garlic pill every day.

 

I get the going broke thing. It forces you to make choices that you shouldn't have to make. Some lyme organizations offer some financial aid - it might be worth looking into.

 

KathyN - I can see the logic of your protocol for Pandas, but would hesitate to use it for lyme. The last thing you want to do for a chronic lyme infection is suppress the immune system. But I hope it really helps your son!

[sf_mom]

Here is a great resource for financial assistance.

 

http://www.lymelightfoundation.org/grants/

 

I too think it could easily be a herx response from Bactrim. In our experience, there are plateaus with Lyme treatment and I always wonder what we are missing when it happens. I am going to throw out a couple of things to investigate if you haven't already.

 

1. Run a viral panel inclusive of Coxsackies titers. Should be covered by insurance

 

2. Babesia as co-infection (even if you have prior negative results). If you are in NE. It is common for many LLMDs to automatically treat due to its prevalence in the area. Perhaps explore doing an herbal challenge with your Dr. to see if its an issue or retest for converted results.

 

3. Consider the possibility of yeast or parasites with LLMD. You can always do a comprehensive stool analysis to look for both but given length of treatment and prevalence of both with Lyme et al. You can also just do a treatment course and look for responsiveness. Warning: there is also a herx response with yeast/parasite die off.

 

I also wanted to mention that we have had only one child receive hdIVIG (3 treatments, 8 weeks apart) for originally thought to be PANDAS. He has not had a treatment in almost 3 years and continues to make progress towards recovery. Our younger two children who are also diagnosed with gestational lyme et al have not had hdIVIG (one considered to also have PANS presentation). I wanted to give you confidence as you move forward with treatment possibly without hdIVIG that recovery is still possible.

Edited November 23, 2012 by SF Mom

[eljay1]

Thanks, everyone for your replies. We have been treating for yeast all along, and sometimes it is worse than other times. The Rifampin seemed to work in the beginning, and then it seemed to lose its effect. I think that he might be herxing from the Bactrim too. I just needed the reassurance. Thank you all so much for letting me vent!!