Lyme, strep, or both?

[dcmom]

Go for the PEX!! If you have any questions about it PM me.

 

PEX is not so expensive, frankly. We had it done at Georgetown, in network. It was about $5k- that was the negotiated rate. It was 4 days in the hospital. My kids came home, one at 100% and one extremely improved and on the way to full remission. I think it was a bargain, wish we could do it more often

[momofgirls]

Laure

I am sorry your daughter is struggling so much with lyme treatment. Its soooo hard to tell the difference between herx, new exposure, and treatment just not working. I can say for us at times when I was unclear, we would stop all abx for a couple days and watch for a sign of improvement. This usually helped but unfortunately as soon as abx were started the symptoms would all return quickly...not that they stopped completely but we did get some relief. At this point it sounds like you almost need to clear the slate and take a break from treatment. Then maybe add things back in slowly. The longest break we took was for two weeks. Late last summer when we were 2 months into lyme treatment I felt very scared and unsure. Just the addition of bactrim to zyth for lyme/bartonella brought back all my daughter's tics. I think I called Dr. J's office once a week for reassurance and finally in August he suggested ivig. We went through with it and did not see any benefit. That is when we took the two week break from abx and moved on to a lyme doctor that uses ART. I was surprised that he found mycoplasma, bartonella, and lyme still after all the abx and ivig's my daughter had received. I guess what I am trying to say is that ivig and pex do not erradicate infection. Our lyme doctor has worked away at the infections one layer at a time. We started with antivirals and treated for mycoplasma. Then we addressed bartonella and now finally she is down to just lyme. It was difficult at times but I have to say the infections cleared one at a time as our doctor expected. I understand that not everyone is open to using ART as it is not conventional but I was desperate and it has turned out to be a life saver for us. In my opinion, pex may or may not provide temporary relief for your daughter but I do not think it will hold long as your daughter still clearly has too many infections. We have never done pex but there are a few other lyme kids on this forum that did do pex and saw little to no benefit. Those children that did benefit ultimately regressed. I am trying to understand Dr. J's theory in advising you to pursue pex. I get that there are bad antibodies circulcating and too many toxins in the system but it seems that if you filter those out without erradicating the infections triggering the disease, then the symptoms will just return. To me the same can be said for ivig...how do you correct an autoimmune disorder triggered by infection with ivig without getting rid of the infection causing the disease. I don't want to offend anyone because I know there are some exceptions and some people have benefited from these treatments. It's just these lyme kids are tricky.

Anyway, just my thoughts but it makes more sense to me to take a break from treatment to see if this could be an extended herx then maybe add things in slowly after the break.

Good luck my thoughts are with you.

Kim

[lismom]

Go for the PEX!! If you have any questions about it PM me.

 

PEX is not so expensive, frankly. We had it done at Georgetown, in network. It was about $5k- that was the negotiated rate. It was 4 days in the hospital. My kids came home, one at 100% and one extremely improved and on the way to full remission. I think it was a bargain, wish we could do it more often

 

Two kids at $5k? The quotes I got for one child is not near that. Your lucky.

[ptcgirl]

We have had tonsils and adnoids removed as of Jan2011 one daughters ASO and Dnase went up over 250 points higher. DO you have to wait to see results because I have seen nothing different yet.

We didn't have them checked afterwards because she was completely symptom free. For my dd is was immediate and lasted 9 months.

[LNN]

Go for the PEX!! If you have any questions about it PM me.

 

PEX is not so expensive, frankly. We had it done at Georgetown, in network. It was about $5k- that was the negotiated rate. It was 4 days in the hospital. My kids came home, one at 100% and one extremely improved and on the way to full remission. I think it was a bargain, wish we could do it more often

 

Two kids at $5k? The quotes I got for one child is not near that. Your lucky.

Georgetown's bills came to about $23K for us (3 days in PICU). Insurance negotiated rates dropped it to $18K (I think - it was 2 yrs ago). But we had met our deductible and only had to pay 20%, so our out of pocket was about $3600, plus $1800 in travel, hotel, etc since we had to take the whole family to DC (no extended family to help out). So $5500 - roughly what we had to pay for IVIG as well. (this kid better take care of us when we're old!)

 

Pex was a good experience for us but it wasn't sustainable. And it long before we ever considered lyme. As a general theory, I tend to agree with Kim, but I can also understand being at a point where relief can be priceless, even if it's temporary. I think the hardest part for us was that the word "cure" was used, so the steps backward, when they came, were heartbreaking.

 

You'll have all of our support no matter what you decide. Unfortunately, as always, you have to trust your own gut.

[smartyjones]

moved on to a lyme doctor that uses ART. I was surprised that he found mycoplasma, bartonella, and lyme still after all the abx and ivig's my daughter had received. . Our lyme doctor has worked away at the infections one layer at a time. We started with antivirals and treated for mycoplasma.

 

it seems that if you filter those out without erradicating the infections triggering the disease, then the symptoms will just return. To me the same can be said for ivig...how do you correct an autoimmune disorder triggered by infection with ivig without getting rid of the infection causing the disease.

 

 

momofgirls -- curious -- were there viral infections you didn't mention that you found by ART or was it general protocol to use antivirals? did you treat with traditional abx and meds?

 

yes, what you mention about PEX and IVIG has always stumped me also. a leading dr told me about a year ago, that the IVIG shuts down the immune system and when it reboots, it doesn't have the same problem - just like rebooting your computer. i just can't understand why it won't go into the same malfunctioning pattern if the infection is still there that caused it in the first place. the only thing i've been able to piece together is the antibodies also help the infection b/c some of these infections are ones that the body should be able to kick on it's own but our kids don't seem to -- i don't know -- that's always stumped me about ivig.

[momofgirls]

smartyjones, yes the virus was diagnosed via ART and actually the mycoplasma and bartonella too. Blood work only revealed lyme and we had a rash that Dr. J identified as bartonella. The ART doctor prescribed a homeopathic antiviral for the virus. He used a combination of antibiotics and herbs for the bacterial infections.

 

I posted this on the pandas board last night because it was relevant to one of the moms over there but in regards to ivig being used to treat the autoimmunity while a chronic infection is still present...Dr. B monitored my daughter's C3D (immune complexes) all last year. They were very high and we hoped ivig would bring them down. This was before we knew with what she was infected as her strep titers we normal and we hadn't checked for lyme. After ivig the immune complexes did come down some but when we re-tested 6 weeks later to see if they would continue to go down, they had gone up again. Right around that same period we tested for lyme and found out she was positive. At that point we realized that the immune complexes were probably due to the chronic infection and would not resolve with ivig without erradicating the lyme. So it's just my opinion, but for us the ivig was not successful because the infection had not been cleared.

 

 

 

 

 

 

 

 

moved on to a lyme doctor that uses ART. I was surprised that he found mycoplasma, bartonella, and lyme still after all the abx and ivig's my daughter had received. . Our lyme doctor has worked away at the infections one layer at a time. We started with antivirals and treated for mycoplasma.

 

it seems that if you filter those out without erradicating the infections triggering the disease, then the symptoms will just return. To me the same can be said for ivig...how do you correct an autoimmune disorder triggered by infection with ivig without getting rid of the infection causing the disease.

 

 

momofgirls -- curious -- were there viral infections you didn't mention that you found by ART or was it general protocol to use antivirals? did you treat with traditional abx and meds?

 

yes, what you mention about PEX and IVIG has always stumped me also. a leading dr told me about a year ago, that the IVIG shuts down the immune system and when it reboots, it doesn't have the same problem - just like rebooting your computer. i just can't understand why it won't go into the same malfunctioning pattern if the infection is still there that caused it in the first place. the only thing i've been able to piece together is the antibodies also help the infection b/c some of these infections are ones that the body should be able to kick on it's own but our kids don't seem to -- i don't know -- that's always stumped me about ivig.

[matis_mom]

Wow, you've got a complicated picture here, especially with your son coming home with "something"???

I totally understand how you feel. DS13 is also stuck in a bad place. Tons of abxs for Lyme/Bartonella/etc, but no real relief from PANDAS. Just last weekend he flared because of a virus (I think?) that's going through the house. DD8 looked like she had strep, but it was negative. Still, it is affecting him. I think until they are 100% recovered they still react to strep and viruses. One thing that has helped stop the downward spiral in the past is Bicillin shots (I don't know why I didn't think of this until now!!!). Somehow it seems to stop things from getting worse.

 

I would stay the course, and try to address allergies, exposure (to other family members being sick?), etc.

 

Like your family, many of us have Lyme and I think until we get that under control, we seem to keep catching anything that is going around, and both my husband and I have high titers that we cannot seem to bring down. I even had my tonsils out last Nov. He went for a checkup a couple of weeks ago, ASO still high, they did a rapid, and it was positive. It is very discouraging!!! We keep getting (or just not clearing) strep, and we usually do not have any symptoms (except we know we have it because of ds's behavior) It is so hard to tell exactly what is that is making them worse, so easy to fall into paranoia (that's me!), so tempting to throw in the towel...

 

One thing that helps my son during exacerbation is to write things down. He has a very hard time talking about his intrusive thoughts/contamination fears/etc, but somehow when he puts it down on paper it really helps him settle down. Maybe that and a little ibuprofen will at least give her a breather. Hang in there!