First LLMD appointment

[laure]

Hi Lyme/Pandas friends!

Dd9 had first lyme appointment yesterday. Although ILADS doctor, she was hesitant to override PANDAS expert's medical regimen. But I convinced her by telling her that our PANDAS doc does not claim to be a lyme expert...and I really believed that the spider marks she had on her arm after starting zith were unusual, and if there was bartonella in the mix, I don't mind testing/treating for that too. And it can't hurt, right? So she added the weekend "cyst-buster" Tindamas 250 bid, and some blood work to check for the bartonella strains which Igenex doesn't test sensitively enough for. Still on zith and Augmentin from Dr. B., so nothing has changed there.

Question: We are scheduled for first Ivig Jan 23rd...should we still do this, or wait and see if the abx for lyme are helping first? I would love a quick fix, but not if we are going to have to continue multiple Ivigs because the lyme erases the benefits of Ivig. What are others' experiences?

She is making steady progress with OCD behaviors, (albeit quite ragey) since treating with Augmentin December 1 for lyme.

Thanks for all wisdom, this lyme stuff is all new to me!

[NancyD]

Hi Laure,

 

I cannot suggest what you should do but I can share with you our experience. I should preface this with the fact that my DD14 has had PANDAS since age 2 or earlier but I do not know how long she has had LD. It could have been 1 year, 2 years, or 14 years.

 

My daughter has had many IVIg infusions -- 3 HD (1.5 g/kg) and many LD (ranging from .5 g/kg to 1 g/kg). The LD infusions have always made her worse while the HD infusions have always made her so much better. Her first HD infusion was in Aug 2008, her second HD infusion in March 2010, and her third HD infusion was last week. In each of the first two HD infusions it took her exactly 10 weeks to heal (and those 10 weeks were not exactly the best 10 weeks!). BUT, she was in severe exacerbation during these infusions. The first HD infusion stopped her vocal and motor tics completely (her tics were REALLY bad). It took about a year for her last tic to completely disappear and they never came back, even after subsequent exacerbations. Each of the HD infusions stopped the violent rages, although they would creep back after another exacerbation. Still, the infusions never helped her high anxiety or scrupulocity. Once we got the LD diagnosis we figured that was the reason why her PANDAS remissions did not stick longer and why the IVIg did not help with the anxiety or OCD.

 

My daughter had been in treatment for only 48 days for LD when she received another HD infusion. Her treatment has been fairly aggressive: 1000 mg bid Augmentin XR, 250 mg bid Azithromycin, 500 mg bid Tindamax, 200 mg Diflucan. Because of daily diarrhea we ended up pulsing the Azith (4 days) and Tindamax (3 days) and that seems to work better. She also takes high-dose Vitamin C, Vitamin D3, Magnesium Glycinate, Omega 3, Vitamin E, NAC, Theralac, Transfer Factor, Transfer Factor LymPlus, Milk Thistle Max, Querciplex, Adrenal Companion, Super Vitamin B, and Springreen No. 77 Detoxificant (bentonite clay), along with lots of Epsom Salts and Hydrogen Peroxide baths.

 

I wanted to treat her for a while longer for the Lyme before doing another HD infusion, BUT after battling our insurance company for many months to cover more infusions we finally got approval. However they only gave us a 3-month window. So that made the decision for us.

 

Since Thursday's infusion my daughter has been like another person. In fact, I said to her yesterday..."who are you and what did you do with my daughter??" She has been doing amazingly well and extremely considerate of me. She even came home yesterday and put up the xmas tree all by herself and cleaned up everything after. She told me I should rest. She NEVER NEVER would have done this before. She says her anxiety and OCD is not as bad as it was though she's afraid it will come back. She seems SO MUCH happier and easy going. I know this can all change in a heartbeat. In fact, I was reticent to say anything just yet!

 

We do have two more HD infusions sheduled in 7 weeks and 14 weeks and we will probably up the dose to 2 g/kg. Unless, of course, the most recent infusion makes her much worse.

 

This is a tough decision to make, Laure...I know it was for me. Both of our doctors thought we should. Let us know what you decide and how things go. I will do the same.

 

Nancy

 

 

Hi Lyme/Pandas friends!

Dd9 had first lyme appointment yesterday. Although ILADS doctor, she was hesitant to override PANDAS expert's medical regimen. But I convinced her by telling her that our PANDAS doc does not claim to be a lyme expert...and I really believed that the spider marks she had on her arm after starting zith were unusual, and if there was bartonella in the mix, I don't mind testing/treating for that too. And it can't hurt, right? So she added the weekend "cyst-buster" Tindamas 250 bid, and some blood work to check for the bartonella strains which Igenex doesn't test sensitively enough for. Still on zith and Augmentin from Dr. B., so nothing has changed there.

Question: We are scheduled for first Ivig Jan 23rd...should we still do this, or wait and see if the abx for lyme are helping first? I would love a quick fix, but not if we are going to have to continue multiple Ivigs because the lyme erases the benefits of Ivig. What are others' experiences?

She is making steady progress with OCD behaviors, (albeit quite ragey) since treating with Augmentin December 1 for lyme.

Thanks for all wisdom, this lyme stuff is all new to me!

[sf_mom]

It is a tough call and our experience was similar to Nancy's daughter. Rough for a while but the OCD (which wasn't a huge problem for our son) resolved after his last treatment. The TICs hung in there for almost 6 months post the last treatment (mild by the 6th month) and finally shed his symptoms when he started Omnicef/Azithro combo last June. Remember they think my oldest has Bartonella but no confirming results yet. Omnicef/Azithro will treat Bartonella. We have seen a couple of TICs (exactly two) since starting Olive Leaf Extract last week.... I think the reemergence is to be expected for the next year when regimen changes occur.

 

I did corner our Dr. today regarding the use of hdIVIG again. AND, his response was the following 'not a cure' for Lyme (I think we all knew that)... could "potentially" create cytokine storm "inflammation". So, possibly why those that are highly co-infected have a tougher time with hdIVIG but I am only guessing. Sorry, no concrete answers which leads you back to a tough decision.

 

One thing we are doing is an IgG powder to help boost their immune response. Jury is still out. I believe it is helping but won't know until we are further into treatment and retest their subclasses.

 

-Wendy

[LNN]

I did corner our Dr. today regarding the use of hdIVIG again. AND, his response was the following 'not a cure' for Lyme (I think we all knew that)... could "potentially" create cytokine storm "inflammation". So, possibly why those that are highly co-infected have a tougher time with hdIVIG but I am only guessing. Sorry, no concrete answers which leads you back to a tough decision.

 

One thing we are doing is an IgG powder to help boost their immune response. Jury is still out. I believe it is helping but won't know until we are further into treatment and retest their subclasses.

 

-Wendy

 

I think my son bore the brunt of such a "cytokine storm" - he was so seriously effected by HD IVIG, and not in a good way. I watched him "herx" for 8 weeks, not realizing he had lyme. When he finally came out of his tail spin, he was no better off than before IVIG. His immune complexes were unchanged, his IG levels were roughly the same, and his lyme was still there. If IVIG did anything, it pointed the way to lyme because when he failed to respond and remained sick, the doctors and our family started to dig further for a chronic infection. But I was always gun shy of IVIG and with perfect hindsight, I wish we hadn't done it.

 

We achieved very good results with two months (so far) of bactrim at $3/month. If he made a big stride forward after pex (got rid of tics), then he paid a price with IVIG and made a 10 mile leap with a lyme protocol. I know others have had better results and maybe we could've reduced the post-IVIG setback with proper detox...I'm email pals with another mom whose son had severe setbacks after 2 HD IVIGs and then they finally discovered cat-scratch signs of Bartonella and lyme. Within 48 hours on bactrim, he was much better.

 

Obviously, your doctors know your situation and details and have far better understanding of these things, but I just wanted to share my experience.

 

Nancy - so glad to hear about DD! I hope you have an awesome time in the DR- Merry Christmas!

[sf_mom]

Laura,

 

Thanks for sharing your story. I have talked with several off forum that have had identical experiences to yours and will add the results are very mixed with the hdIVIGs. Hence, why I keep bugging our Dr. about its use 'specifically' for Lyme. My hope was to get some perspective..... but no solid recommendation was provided one way or the other. Just the "possibility" of the cytokine storm which equals inflammation and potentially extended herx that you have no control over until things settle out.

 

My hope is that more parents now diagnosed with Lyme will share their stories so we are 'ALL' able to make better decisions for our children going forward.

Edited December 15, 2010 by SF Mom

[tpotter]

I'll weigh in, too. We were in the same boat. We had fought long and hard for the IVIG (HD), after a really horrendous year (my kids have been sick 7 years (my 15 yo), and at least 16 years (for my 18 yo...we've managed to date it back at least that far.) Both have had PEX (last year,) and my 15 yo also had IVIG 2 months before the PEX.

 

While we were fighting for the IVIG this year, I was going out of my mind unable to get anything to move forward (not just the IVIG, but other things, too.) So, I decided to do the one thing I had control over...make an appointment with the LLMD on the "off chance" that maybe we had Lyme.

 

Well...we do have it...everyone in my family. My 15 yo tests completely negative (except for IgG band 41 on the WB...even his CD57 is well above 100!) But, he is herxing worse than all of us combined, and the doctor thought that marks on his arms might be cat scratch marks of Bartonella.

 

But, we got the approval very shortly after starting Lyme tx, and I wasn't going to ignore that. I firmly believe that my boys' problems are autoimmune, and their CD3 is through the roof (32 and 84...yes...84!!!) both had low titers for strep pneumonia, as well.

 

So, we took the chance. It's been incredible...the change in behavior for both, but especially my 18 yo. The 15 yo was doing great, but is really, really struggling. I'm not convinced, though that it was the IVIG. In fact, he had a pancreatitis attack a few days after the IVIG, but the ER doc, and the GI doc who we just saw all agree it's probably one of 2 abx and/or one of 2 seizure meds. We pulled him off the doxy (with the LLMD's approval,) and are changing course.

 

But, I'm glad we've done the IVIG, and we will do it again. We're scheduled in January. Again, that's just my opinion. Remember, every child is different, and in the end, you have trust your own gut.