Pandas/Lyme Update

[sf_mom]

This will probably be my last update to the PANDAS forum.... BUT, I thought I critical, once again, to share our story in hopes it will help some parents desperately looking to get their children help and proper diagnoses.

 

Many of you know our story and for those that don't I'll provide a brief history. Our DS1 (approximately 50 pounds throughout treatment) was diagnosed with PANDAs in the summer 2009 after a sudden on-set following strep related illness (CaM Kinase 124 - 11 days post steroid burst). He was treated by Dr. K with hdIVIG in Sept 2009, Nov 2009 and Jan 2010. Our son was responsive to both the 5 days steroid burst and the 3 hdIVIG. The only adjustments made to Dr. K's protocol is that we found our son to be more responsive to the higher dose Azithromycin 500 m.g. throughout his treatment (we discovered this after 4 times of upping and lower dosage). After our son's 3 hdIVIG treatment we maintained the higher dose Azithromycin for 4 months. Our son's recovery was similar to everyone's 'rocky' with improvement over time. 5 months post his last hdIVIG we added 600 m.g of Omnicef and lowered the Azithromycin to 250 m.g. At that time we saw a rapid resolution to remaining mild symptoms that caused us pause. We also noticed that post hdIVIG treatment our son was improving in 3 to 4 week cycles. He would have a flair of symptoms and then see a rapid improvement with a baseline adjustment upwards, maintain again for another couple weeks and start the process all over again. By the end of the 6 month post his last IVIG treatment he was having many back to back full remission days with improvement in areas we did not realize were related to PANDAS. He had one remaining symptom in June that caused us major distress of blood in his stool and we needed to investigate further.

 

Do to our unique situation of elevated ASO and anti-DNAse-b titers in my husband, my symptoms and all our children's elevated CaM Kinase we choose to see one of the top LLMDs in the country written about in Insights to Lyme Treatment http://lymebytes.blogspot.com

 

We are now just getting more of our family test results back and as many of you know it was discovered I am positive for Lyme Disease. It is also understood by many Dr.'s that when a child gets LD in-utero they often do not makes antibodies for the bacteria because it is not recognized as foreign. Also children with weaken immune systems, may not make enough antibodies to show positive results on antibody testing. We tested two of our children for Lyme Disease via Igenex prior to our LLMD appointment and both were positive for IgM, IgG Band 41 ONLY. However, in light of the blood in the stool in DS1 we kept our appointment. Our LLMD, was not phased at all by the essentially negative Igenex results and proceed with provocation DNA testing. Those DNA results have come back Positive for BB. Apparently, Lyme likes to hide out in the bladder and can often cause urinary issues but it is also why it is easy to pick up the DNA in the urine.

 

They are also suspecting Babesia and Bartonella for our children, as well as myself. I have one common symptoms for Babesia that is maroon/red colored freckles on my stomach (had no idea). My children all suffering from drenching night sweats with the introduction of Alinia also indicating Babesia. I am in the process of being tested for Babesia and apparently the use of antibiotics can produce false negatives so they are using blood that was provided by me prior to antibiotic use and will know those results at our next appointment.

 

Anyway, I am posting our story to help others understand how important it is to investigate throughly Strep, Mycoplasma,Viruses, Molds, Allergens, Lyme Disease potentially contributing to the hyper immune response prior to PANDAS diagnoses to ensure the proper issue/infection is being addressed. At the time we pursued PANDAS diagnoses we had no idea these other infections were a part of the problem. Again, our son was responsive to PANDAS treatment and we will never know if those hdIVIG would have eventually failed. When we recently added Alinia (cyst buster, anti-parasitic, anti-viral, antibiotic) to the Azithromycin we witnessed the largest herxing response to date in all our children. We revisited blips of OCD and flair's of TICs that we have not witnessed since sudden on-set. Our one son is just over 9 weeks into Lyme treatment and he is heading back towards full remission of symptoms. In addition, to discovering Lyme Disease, they found a parasite in intestinal track that he was unable to resolve,, we have found he suffers from 'leaky gut syndrome' due to the breakdown in mucus lining wall of the intestinal track resulting from the parasite and now has a severe reaction to dairy and eggs. We are repairing intestinal wall with a histamine reducer and IgG powder combo. It is all helping and are hopeful that his reaction to dairy and eggs is temporary.

 

My twins are improving with treatment as well. Our DS2 ocd and rages disappeared over the last six months with the use of azithromycin. Both of our twins have Lupus like symptoms with severely compromised immune systems. We are starting to notice the Liveado Reticularis fade. We are very hopeful their immune systems will rebound without more aggressive treatments other than combo antibiotics.

 

Anyway... there are many more details, too much to even mention. Wishing you all the best in the recovery of your children.

Edited September 30, 2010 by SF Mom

[sf_mom]

I wanted to add.

 

Mycoplasma, Yeast, Mold, Lyme 'Spirochette' and Babesia 'parasite' can all create a herxing response with antibiotic treatment which is a worsen of symptoms prior to improvement. Herxing can last months.... again you can read about extended herxing cycles in the book link provided in my other post.

Edited September 29, 2010 by SF Mom

[justinekno]

Thank you for sharing your story. I'm glad to hear that your family is moving in the right direction. Did you find this book to be a helpful tool? It doesn't seem like a book you can pick up at your local Borders

 

Do to our unique situation of elevated ASO and anti-DNAse-b titers in my husband, my symptoms and all our children's elevated CaM Kinase we choose to see one of the top LLMDs in the country written about in Insights to Lyme Treatment http://www.lymebook.com/insights-book-connie.

 

[sf_mom]

There is a lot of information in the book that will make your head spin. For me, it gave me confidence in our Dr. and his treatment philosophies. I have a much better sense of why he is working to improve my son's 'leaky gut' and why he is addressing adrenal issues for me, etc.

 

I think it is the type of book you want to read slow and use it as a treatment reference guide.

[Chemar]

the book link leads me to an error page?

[mama2alex]

Thanks for posting the update! I'm hoping this isn't your last post to the PANDAS/PITAND forum. The info you've posted has helped a lot of people find the root cause of their children's issues, and the link between PANDAS/strep and Lyme Disease needs to be discussed.

 

I understand why LD and PANDAS were separated into two forums, but they should not be mutually exclusive conversations.

[sf_mom]

Corrected Link: http://lymebytes.blogspot.com

[EmersonAilidh]

I wish you & your family!!! We'll miss you here on the forums, but it must be happy to be able to say goodbye. Hopefully you'll check in every now & then, but if not.. Good luck with the Lyme fight!! Even if a few hundred miles away, I, & a lot of others, are fighting right along with you. <3

[ajcire]

Glad to hear you have found your answers! I have been trying to follow all this but its all so very confusing. I have a few questions that I hope make sense.

 

1) Does this mean your son (or any of your kids) does not have pandas?

 

2) What is DNA testing for lyme? Why doesn't everyone just go to that if it's what gives more clear answers?

 

3) How did the dr. discover leaky gut or is it assumed based on symptoms? Meaning is there some sort of test for this? How did he discover a parasite?

 

4) This one might be confusing.. I'm hoping it makes sense when I actually try to put the question in words. I think you said your child does not make antibodies because he got it utero but if that is the case than what is the elevated camk measuring?

Edited September 30, 2010 by ajcire

[momofgirls]

Hope I have this right in my thinking but I believe the cam k is elevated due to auto-antibodies attacking the brain. Those auto antibodies are not strep antibodies just like they are not lyme antibodies. Right? I think you can have negative strep titers and negative lyme titers and still have auto antibodies producing a high cam k. Basically the Cunningham test just tell us something is wrong and we need to be the detective and figure with what our kids are infected. It doesn't really mean its lyme not pandas just that lyme is one of the microbes triggering symptoms. Lyme patients react to strep and viruses just like "pandas" kids do. Its really all the same to me. We all know that pandas cannot be diagnosed based on strep titers. Some kids just don't have a strong response to the tests for various reasons. I am sure it is the same in lyme testing.

Wendy, that PCR DNA test is suppose to clear confirmation so I am so sorry your son has lyme but am very optimistic that he will beat this. Thanks for sharing.

Kimquote name='ajcire' timestamp='1285805162' post='86380']

Glad to hear you have found your answers! I have been trying to follow all this but its all so very confusing. I have a few questions that I hope make sense.

 

1) Does this mean your son (or any of your kids) does not have pandas and it is all lyme?

 

2) What is DNA testing for lyme? Why doesn't everyone just go to that if it's what gives more clear answers?

 

3) How did the dr. discover leaky gut or is it assumed based on symptoms? Meaning is there some sort of test for this?

 

This one might be confusing.. I'm hoping it makes sense when I actually try to put the question in words. I think you said your child does not make antibodies because he got it utero but if that is the case than what is the camk measuring?

[ajcire]

Thanks Momofgirls. The antibodies are from the bacterial infection. 'auto-antibodies' suggest that the antibodies that were supposed to target the bacterial infection, but went awry and erroneously attack a part of the body, in the case of pandas, the brain? so if no antibodies, then no auto-antibodies, i would think.

[momofgirls]

So no strep titers no pandas?

 

 

Thanks Momofgirls. The antibodies are from the bacterial infection. 'auto-antibodies' suggest that the antibodies that were supposed to target the bacterial infection, but went awry and erroneously attack a part of the body, in the case of pandas, the brain? so if no antibodies, then no auto-antibodies, i would think.

[peglem]

So no strep titers no pandas?

 

 

Thanks Momofgirls. The antibodies are from the bacterial infection. 'auto-antibodies' suggest that the antibodies that were supposed to target the bacterial infection, but went awry and erroneously attack a part of the body, in the case of pandas, the brain? so if no antibodies, then no auto-antibodies, i would think.

 

If by strep titers, you mean ASO and AntiDnase, those are actually antibodies to strep exotoxins- they are not the antibodies that are causing basal ganglia malfunction.

[sf_mom]

2) What is DNA testing for lyme? Why doesn't everyone just go to that if it's what gives more clear answers?

 

Good question... I honestly don't think a lot of Dr. know this type of testing is easily available. Plus they would also have to understand how to trigger die-off with antibiotics. In our situation the trigger: Alinia worked perfectly to shed the die-off into his urine. AND, as stated below there is often a false negative even when a patient is 'challenged'... BUT, from what I was told today when they do find the DNA, its a POSITIVE. Here is some perspective from the following link http://www.anapsid.org/lyme/wb.html

 

Bb can hide in the brain and cerebral spinal fluid (CSF) and by altering its surface proteins, can remain invisible to the immune system for a long period of time. Once the immune system figures out what it is and starts making antibodies to it, it shifts is surface proteins once again, fooling the body into thinking the infection is over.

 

Bb can also turn itself into undetectable cysts and various other forms (called L-forms) which also help it elude the immune system. If the immune system can't see it, the immune system can't make and, or only insufficient antibodies, which all contribute towards making the organism impossible to detect by any testing methodology, including WB. Thus, blood and urine tests for Bb can be negative, even if the patient is "challenged" by being given high dose injections of antibiotics to try to trigger a reaction from or partial die-off of Bb that will cause it to show up in the blood or urine.

 

-Wendy

Edited September 30, 2010 by SF Mom

[KeithandElizabeth]

Hi SF Mom:

 

Thank you so much for the update.

 

As you know, our story is very similar and I do think that it is soooo important to check for lyme and mycoplasma at the beginning of this PANDAS journey. Like your son, our son did fantastic with the first hdIVIG!! I thought all of our problems had been solved. After our son relapsed and could not reach 100% after 6 IVIG's, we also discovered that our children had many bacterial infections (including lyme) that were creating the PANDAS symptoms.

 

Again, please keep us updated because I do strongly feel that lyme is just one of the triggers for PANDAS symptoms.

 

Thanks,

 

Elizabeth