Update On Our Visit to LLMD

[sf_mom]

I really didn't think I'd be updating this quickly but we are finally putting more pieces of the puzzle together for our family.

 

This past weekend and this morning, I had two different appointments with our LLMD. One appointment for each of our twins. In conjunction with those visits I received the results of my Lyme Testing. It turns out I am IFA positive for Lyme... as well as the following results for Band 18+, Band 31+, Band 34 IND, Band 41 IND. Because Band 31 is very specific to Lyme they will reconfirm their suspicions with further testing with regard to Band 31 and I'll know those results in about two more weeks. I have not been tested for co-infections yet.

 

There is some thought that our DD also has a co-infection of Bartonella or Babesia due to clinical history and we are running additional DNA testing on her stool and will not know those results for another three weeks. We are finally running numerous Lyme/co-infections tests on her twin brother who has not been tested yet.

 

Just to refresh everyone on the status of our family: Our twins are now 3 years old both have elevated CaM Kinase DD 159, DS 148, Strep Pneumo deficiencies in almost all serotypes and Igg subclasses deficiencies in 1 and 3 along with low RBC. We have rerun identical lab work on several occasions from the same lab and their deficiencies continued to worsen even though they have been on antibiotics since Jan. Our daughters Iggs 1 are now in the 200s. Both our twins 'look' 80% better from the Azithromycin but do have lingering physical symptoms.

 

Our older DS 'PANDAS' had an obvious strep trigger and sudden on-set of symptoms in June of 2009. He has done really well post 3 hdIVIG (Sept 09, Nov 09, Jan 10) but had a few remaining symptoms (red brown stools) and identifiable recovery/herxing pattern that caused us to believe there was something more than just strep present. His ASO titers were 95 and anti-DNase-B 60 in June.

 

My Husband has ASO titers (283, 244) and Anti-DNase-B titers (680, 680). Tests for my husband were taken before and after antibiotic treatment. We will most likely test him for Lyme Disease in the near future.

 

Recently our PANDAS son was experiencing many 100% days with no OCD or TICS and we were very pleased his recovery. However, he had red brown stools for nearly seven weeks so we confirmed blood in his stool as well as ruled out E. Coli, H pylori, C Diff and Giardia through additional testing. Our LLMD put our son on 500 m.g. Alinia (anti-viral, anti-parasitic, cyst buster) as well as 250 m.g. of Azithromycin. Within two days of our son starting the new antibiotic he appeared to have flu like symptoms, those symptoms quickly evolved into mood liability and then re-emergence of one TIC per day.... then eventually into multiple TICs per day and even new TICs popping up but the red/brown stools cleared up in the first 48 hours of starting Alinia. YES, this is HERXING AT ITS FINEST.... very scary for both my husband and I. Things have since settled in the last two days. We currently have no mood liability, flu like symptoms and maybe a flair of TICs here or there.... I'll know more in a couple of weeks if things have truly settled out for our son. We are very hopeful that the recent herxing is a good sign and he will improve even further.

 

Anyway, the Dr.'s are providing a 'PRELIMINARY' diagnoses of congenital Lyme for all three of our children until further DNA testing is completed. Thankfully our children have responded well to antibiotic treatment and will all be taking Alinia/Azithro combo in the near future.

 

A couple of things I should add..... I was given steroids the last two weeks of my twin pregnancy for a full body rash. I was also having unexplained seizures during the last six weeks of this particular pregnancy. I do believe the steroids might have contributed to the transmission of Lyme to my twins. I will reiterate that my children may NOT BE HUGELY positive for LYME antibodies because it is potentially congenital and the bacteria is not recognized as foreign. Also due to their low Iggs it is possible they don't have a huge antibody response. However, I do believe they will find something once further DNA testing is completed and will update at that time.

 

We are devastated by the news but relieved to have the direction and support of some wonderful friend's and Dr.'s. A huge thanks to Lyme Mom, Pacific Mama for posting about Lyme, Elizabeth for encouraging others off forum to test for Lyme!!!!!

 

 

-Wendy

Edited August 30, 2010 by SF Mom

[KeithandElizabeth]

Wendy:

 

Thank you so much for sharing your information.

 

Again, I just want to reemphasize how important the IGENEX lyme and coinfection testing is for all of these children with PANDAS.

 

You have done such a fantastic job in searching for the answers!

 

Elizabeth

[Fixit]

I really didn't think I'd be updating this quickly but we are finally putting more pieces of the puzzle together for our family.

 

This past weekend and this morning, I had two different appointments with our LLMD. One appointment for each of our twins. In conjunction with those visits I received the results of my Lyme Testing. It turns out I am IFA positive for Lyme... as well as the following results for Band 18+, Band 31+, Band 34 IND, Band 41 IND. Because Band 31 is very specific to Lyme they will reconfirm their suspicions with further testing with regard to Band 31 and I'll know those results in about two more weeks. I have not been tested for co-infections yet.

 

There is some thought that our DD also has a co-infection of Bartonella or Babesia due to clinical history and we are running additional DNA testing on her stool and will not know those results for another three weeks. We are finally running numerous Lyme/co-infections tests on her twin brother who has not been tested yet.

 

Just to refresh everyone on the status of our family: Our twins are now 3 years old both have elevated CaM Kinase DD 159, DS 148, Strep Pneumo deficiencies in almost all serotypes and Igg subclasses deficiencies in 1 and 3 along with low RBC. We have rerun identical lab work on several occasions from the same lab and their deficiencies continued to worsen even though they have been on antibiotics since Jan. Our daughters Iggs 1 are now in the 200s. Both our twins 'look' 80% better from the Azithromycin but do have lingering physical symptoms.

 

Our older DS 'PANDAS' had an obvious strep trigger and sudden on-set of symptoms in June of 2009. He has done really well post 3 hdIVIG (Sept 09, Nov 09, Jan 10) but had a few remaining symptoms (red brown stools) and identifiable recovery/herxing pattern that caused us to believe there was something more than just strep present. His ASO titers were 95 and anti-DNase-B 60 in June.

 

My Husband has ASO titers (283, 244) and Anti-DNase-B titers (680, 680). Tests for my husband were taken before and after antibiotic treatment. We will most likely test him for Lyme Disease in the near future.

 

Recently our PANDAS son was experiencing many 100% days with no OCD or TICS and we were very pleased his recovery. However, he had red brown stools for nearly seven weeks so we confirmed blood in his stool as well as ruled out E. Coli, H pylori, C Diff and Giardia through additional testing. Our LLMD put our son on 500 m.g. Alinia (anti-viral, anti-parasitic, cyst buster) as well as 250 m.g. of Azithromycin. Within two days of our son starting the new antibiotic he appeared to have flu like symptoms, those symptoms quickly evolved into mood liability and then re-emergence of one TIC per day.... then eventually into multiple TICs per day and even new TICs popping up but the red/brown stools cleared up in the first 48 hours of starting Alinia. YES, this is HERXING AT ITS FINEST.... very scary for both my husband and I. Things have since settled in the last two days. We currently have no mood liability, flu like symptoms and maybe a flair of TICs here or there.... I'll know more in a couple of weeks if things have truly settled out for our son. We are very hopeful that the recent herxing is a good sign and he will improve even further.

 

Anyway, the Dr.'s are providing a 'PRELIMINARY' diagnoses of congenital Lyme for all three of our children until further DNA testing is completed. Thankfully our children have responded well to antibiotic treatment and will all be taking Alinia/Azithro combo in the near future.

 

A couple of things I should add..... I was given steroids the last two weeks of my twin pregnancy for a full body rash. I was also having unexplained seizures during the last six weeks of this particular pregnancy. I do believe the steroids might have contributed to the transmission of Lyme to my twins. I will reiterate that my children may NOT BE HUGELY positive for LYME antibodies because it is potentially congenital and the bacteria is not recognized as foreign. Also due to their low Iggs it is possible they don't have a huge antibody response. However, I do believe they will find something once further DNA testing is completed and will update at that time.

 

We are devastated by the news but relieved to have the direction and support of some wonderful friend's and Dr.'s. A huge thanks to Lyme Mom, Pacific Mama for posting about Lyme, Elizabeth for encouraging others off forum to test for Lyme!!!!!

 

 

-Wendy

 

Wendy as usual..good stuff...

can you clarify..your son was mostly 100% tic free for several weeks...added alinia..and things came back with a roar...(for how long) and now things have settled ...to what percentage 80-90% better from worst herx point???

 

i just don't think i can handle herxing at this point.....and did i ever mention that i truly done't enjoy rollercoasters....

[sf_mom]

I don't enjoy the roller coaster either. Our son has been on Alinia 19 days. Days 1 to 17 he seemed to be adding symptoms..... last two days huge improvement. I have not noticed a single symptom today, YET. He also lost a tooth at school today which was hugely concerning in the past.

 

I think the amount of Herxing is dependent on the germ load. Two days ago I would have said I was seeing things I hadn't seen in months plus a new TIC. Today, I'm not seeing any symptoms but that is not to say we won't notice something from now until bedtime (edit: definitely noticed TICing at bedtime). Yesterday, he complained of his knees hurting (crying from the pain) and his right knee was swollen. Today no complaints. In our case, I think the 3 hdIVIGs and year of treatment have really helped with germ load.

 

Hopefully that gives a better perspective.

Edited August 31, 2010 by SF Mom

[lyme_mom]

Wendy,

I am so glad to hear about your progress in getting to the bottom of the health issues in your family. Your kids will get better- Dr. Jones told me all kids get better with the right treatment and he see the sickest children. My sister also had a rash while 7 months pregnant. They thought she had shingles but they now believe it was Lyme because that was when her symptoms started and apparently the rash didn't hurt and shingles would hurt. She had something like meningitis for 5 days later that year and they didn't know what caused it. She spent a few days in the hospital. Now it seems clearly connected to her Lyme infection. Good luck and let me know if you need anything.

[sf_mom]

My rash was also unexplained.... it itched so badly I couldn't sleep. They thought PUPPS but the dermatologist wasn't convinced and the steroids were used to stop the itching. It worked for about 24 hours before the symptoms would come raging back. It was a crazy time. In addition, the seizures were very scary because I'd almost black out, feel like an electrical shock through my entire body and then typically bite my tongue while it was happening. Dr. could not explain it either. I was extremely anemic when I delivered them.

 

I had another weird indication about a year ago..... We bought a life insurance policy and I had to have a physical exam to be approved. At that time, the only odd results were high RBC and high WBC in my urine. I now know its an indication of inflammation, cancer or chronic infection?

 

Looking back on things. I swear I've had symptoms since shortly after meeting my husband. We are jokingly blaming him at the moment. I am very hopeful for our entire family... I believe we are in great hands. I guess the one child I am most worried about is our DD who's Iggs are so low. Until she turns the corner on her labs, I am worried she is subject to catch anything going around. I start her on the Alinia in the next two days and suspect a huge herxing response from it. We have a follow-up in two weeks for her.... and then we Dr. H again with two of three kids at the end of Oct. just after the conferences.

 

Again, thanks for all your help/posts. May you have good health Karma for your entire family!!!!

 

-Wendy

[P_Mom]

SF Mom....

 

Just something jumped out at me....blood in your son's stool? YIKES! That can be very serious...it can be indicative of an internal bleed. What do the docs say about this? What are they doing?

[sf_mom]

Believe me..... it is scary!!!!! We obviously ruled out a ton of potential causes while working with several Dr.'s on the issues. I am happy to speak with anyone privately if they should run up against a similar issue. Ultimately, its looking like that some/one of the infections resides in his intestinal track as a result of his responses to the Alinia.

[mama2alex]

Just to help clarify, per her post above, the Lyme doctor gave her son Alinia and the blood in the stool cleared up within 48 hours.

 

SF Mom....

 

Just something jumped out at me....blood in your son's stool? YIKES! That can be very serious...it can be indicative of an internal bleed. What do the docs say about this? What are they doing?

[P_Mom]

I thought this was interesting and pertinent to PANDAS/Lyme......

 

A quote from an article I was reading on Dr. Jones.....

 

"He (Jones) started focusing on cancer in New York, but moved to Hamden with his wife to raise a family and start a pediatric practice in New Haven. In the late ’60s, he noticed clusters of kids — several in a family — diagnosed with juvenile rheumatoid arthritis. Many had strep throat, he says. “When we treated them [for strep] with antibiotics, they got better. That was the beginning of it,” Jones says."

[ajcire]

That is definitely interesting... so was he treating pandas or lyme? Of is it possible that he thought he was treating lyme but he was treating pandas?

[P_Mom]

Indeed, very interesting...and good questions ajcire!

[kimballot]

ajcir and Pmom-

 

When they say "many had strep throat"... does this mean that proportionately more kids with JRA had strep throat than the general population (since many kids have strep throat in any given year).

 

If there were proportionately more JRA kids with strep throat than non-JRA kids, my question is - was he treating an immune system that was dysfunctional - either due to genetic predisposition or due to a chronic infection like lyme or mycoplasma? ...An immune system that could not function appropriately and was less likely to fight off strep on its own? ....An immune system that was not functioning appropriately, so its antibodies could not kill the invading bacteria and it had to use immune complement to try to limit the invasion, which resulted in changes that looked like rheumatoid arthritis? ... an immune system that was in an inflammatory state, breaching the blood brain barrier and allowing antibodies to cross into the basal ganglia??

 

Lots of speculation here... but it would be interesting to sort this out.

 

 

PMom - was there any mention in the article of behavioral symptoms that may have changed with the antibiotics?

 

People keep asking if we are treating PANDAS or Lyme. I think we are treating PITANDs. I think we are treating immune disfunction. I think the underlying infection can vary from child to child and also from one exacerbation to the next. I think we need to treat those infections the best we can and then do whatever we can to beef up the immune system and calm down the inflammation so our kids have a shot at fighting off infections without all the PANDAS symptoms.

 

Sorry if I am rambling - Just my opinion.

Edited September 2, 2010 by kimballot

[cobbiemommy]

I thought this was interesting and pertinent to PANDAS/Lyme......

 

A quote from an article I was reading on Dr. Jones.....

 

"He (Jones) started focusing on cancer in New York, but moved to Hamden with his wife to raise a family and start a pediatric practice in New Haven. In the late ’60s, he noticed clusters of kids — several in a family — diagnosed with juvenile rheumatoid arthritis. Many had strep throat, he says. “When we treated them [for strep] with antibiotics, they got better. That was the beginning of it,” Jones says."

This is interesting because when we started treating for the PANDAS, my son got better. Turns out he has/also has Lyme, so maybe we were really treating the Lyme. Who knows? But he is getting better!

[P_Mom]

Kim...I'll send you the link to the article. But, yes, in one part of the article it states how a mom brought her child in with behavioral symptoms and she got better on antibiotics. Give me a minute to pull it up.