What stage Lyme do you believe your child has? Chronic neurological Ly

[Guest pandas16]

What stage Lyme do you believe your child has? Chronic neurological Lyme?

[NancyD]

Yes, I believe DD15 has chronic neurologic lyme. I believe it may be the root cause of her autism, colitis, and PANDAS. She is no longer on the autism spectrum and her colitis is now healed. PANDAS is in remission. Still has symptoms of Lyme and possibly Bartonella. Her CD57 level is 23.

Edited April 25, 2011 by NancyD

[sf_mom]

Yes, I believe two of my three children have chronic neurological Lyme and they have been extremely responsive to antibiotics that cross the blood brain barrier and kill lyme in all forms: cyst, L-form and active in the brain. All three children have unique presentations while sharing many symptoms. My one child that predominate presentation wasn't neurological based is responding very quickly to treatment. She also had the highest CAM Kinase of three children, normal T and B cell function and normal anti-neuronal antibodies. The other two with OCD/TICS had lower CAM Kinase scores, normal T and B cells function and each had one high 'normal' anti-neruonal antibodies. It is possible that the gender distinction was important to early presentation.... estrogen is believed to be more protective.

 

-Wendy

[KeithandElizabeth]

Yes, I believe that both of my children have chronic neurological Lyme Disease. I believe that the lyme was silent for many years, but was the root cause of their PANDAS issues and high Cunningham titers. I feel that once they got strep, their bodies just crashed because their bodies could no longer fight the multiple infections.

 

Elizabeth

[smartyjones]

i don't believe my kids have neuropsych lyme and TBI. i believe they have those infections that were part of what flooded the bucket -- or whatever that correct analogy is. i think my kids correct diagnosis would be PITAND -- multiple causes. help me, Wendy, what is the proper one -- multiple chronic infection syndrome - ? but with primarily neurological symptoms. actually, ds6 - totally neurological; ds9 - primarily b/c he did have other symptoms, but not to degree of neuropysch ones.

 

both kids had pretty classic pandas presentation. ds9 psych symptoms would easily have been written off as a phase b/c of others things happening (like us selling our house, homeschooling right now); has had ankle/knee pain intermittently past couple of years -- he's a 9 year old boy who plays street hockey and throws himself down catching a football -- easily explained, but also TBI symptoms. ds6 had high titers and positive culture correlating with symptoms, 100% remission on keflex. ds9 had normal ASO and high anti-dnase B, when psych symptoms first appeared. with beginning of treatment, more babesia symptoms came out -- not sure if that's b/c of treatment or b/c was presenting itself.

 

i think strep pushed the symptoms into action but it was the straw breaking the camel's back -- the straw causing the symptoms we witnessed, yet the camel was weak due to muliple infections.

 

i will disclaim i am a strong believer in the whole 'infection - triggered' of the whole issue and believe in getting rid of - or bringing into line -- the infection as key to healing.

 

i also remember an article i read about studies on those who died of the type of brain tumor Sen Kennedy - and a neighbor of mine - died of. a ridiculous % - like in the 80s ofr 90s - had inappropriately high levels of antibodies to toxoplasma gondii. perhpas a lot of people do also and they just don't test for that in an autopsy. it seems a cruel riddle that the more we discover, the more we discover we need to discover.

Edited April 25, 2011 by smartyjones

[Guest pandas16]

Yes, I believe two of my three children have chronic neurological Lyme and they have been extremely responsive to antibiotics that cross the blood brain barrier and kill lyme in all forms: cyst, L-form and active in the brain. All three children have unique presentations while sharing many symptoms. My one child that predominate presentation wasn't neurological based is responding very quickly to treatment. She also had the highest CAM Kinase of three children, normal T and B cell function and normal anti-neuronal antibodies. The other two with OCD/TICS had lower CAM Kinase scores, normal T and B cells function and each had one high 'normal' anti-neruonal antibodies. It is possible that the gender distinction was important to early presentation.... estrogen is believed to be more protective.

 

-Wendy

 

 

That's interesting with the ones that cross the blood brain barrier. I disagree with the estrogen part though. I've tried 10 birth control pills all containing estrogen and had A HUGE PANDAS exacerbation with each one. Furthermore, I can correlate symptom severity with high levels of estrogen in my body. Sidenhams Chorea, cousin to PANDAS, has also been proven to worsen with estrogen- synthetic and during pregnancy. (just so you know when if they ever need birth control)

Edited April 25, 2011 by pandas16

[AmbersMommy]

Chronic neurological lyme here as well.

[sf_mom]

In ASD there is a ratio of 4 males to 1 female. Similar statistics ratio for male to female ratio for OCD. Again... some or one of theories around are related to hormones. There is also another common theme that often girl's with congenital Lyme do not show symptoms until around age 8, etc. Of course, a lot of unknowns still... and I'm sure in 20 or 30 years it will all be figured out.

 

It is very common that a women with chronic Lyme will be much worse around menses... This was very true for me with very intense headaches two/three days prior period and got worse as I aged.

 

-Wendy

[Guest pandas16]

Dr. Cunningham and Alan Jacobs, a behavioral neuroendrochronologist explained that things worsen temporarily before menses because cytokines are released. I worked with Dr. Jacobs and took natural progesterone for a while in order to to create an anti-inflammatory effect and help reduce the negative effects of estrogen.

 

He said that in his experience working with autoimmune disease symptoms tend to worsen days 11-16 and days 26& 27 in a 28 day cycle. He then proceeded to show me a hormone chart- My PANDAS symptoms were worse on the exact days that he hypothesized when estrogen was the highest. Natural Progesterone is an anti-inflammatory. Even momtopandas, an adult who has PANDAS on this forum said that things got worse for her temporarily during pregnancy when estrogen levels are high. I unfortunately had to stop taking natural progesterone because it was made with peanut oil and I am allergic.

 

and autism although has an autoimmune component isn't an autoimmune disease, there are other abnormalities. I was told that women are more likely than men to suffer from both OCD and autoimmune disease.

 

http://www.anxietybc.com/resources/ocd.php

 

To further things- this article states that the typical onset of OCD for women is between 18-24, when estrogen levels are highest. Also, from another neurologist visit in New York he said OCD can also peek at age 35 in women when natural progesterone which balances estrogen begins to decrease.

Edited April 25, 2011 by pandas16

[Bill]

What stage Lyme do you believe your child has? Chronic neurological Lyme?

 

 

We believe chronic neurological Lyme (or TBI co-infections anyway) based on symptoms that my son experienced when he was 3.5 yrs. old that caused current doctor to test for bartonella. While lyme via Igenex was igm only positive, there was no question on the bartonella. As my son started raging when he was 4, symptoms of dystonia by 5 or 6, we know that something went neurological long ago (he's now 13). What took us on the pandas route was his sudden development of OCD 2 years ago. Until then, we could not get anyone (doctors) to listen to us when we told them the dystonia symptom increased shortly after his raging increased. Sigh...... Our doctor attributes (sees) raging and OCD symptoms with bartonella. Same as PANDAS so who knows who is right or if it even matters at this point.

 

bill