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Our Lyme/IVIG story


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Hello.

I thought I'd share our family story in case our own experience can help someone or perhaps suggestions in our treatment will result.

My DD12 was diagnosed with Lyme and Bartonella February of 2011 by a well-known pediatric LLMD. His primary symptoms at the time were back pain, stomach, joint pain & fatique. He was previously dxd with Fibromyalgia and CFS by MG Rheumy.

 

His treatment started on oral Azith, Minocycline and Tindamax. As expected, he got much worse adding muscle spasms and neuropsychiatric symptoms to his symptom list. These include regressive behavior, sensitivity to light, and a neuro-psych exam confirmed processing, attention and memory problems.

 

Over last summer, he was put on IV Rocephin and he seemed to be improving but our dd14 was was diagnosed with a positive WB with Lyme. Her symptoms were less obvious -- hip pain and headaches. Nothing I would have ever thought was Lyme if it wasn't for her brother.

 

In September, after attempting to go back to school, he had a terrible set-back. He was in extreme pain with what we thought were returning muscle spasm. He also had profound bouts of weakness, bizarre psychiatric symptoms etc. After a few trips to ER and finally back his Dr. he was dxd with Myoclonus and his labs also indicated low IGG. As a result, we started aggressive IVIG treatments.

 

The first couple of IVIG sent him back to the hospital but the few treatments thereafter seemed to help. His Myoclonus stopped (although he still has shaky hands) -- we have not seen the disabling weakness, his GI issues improved for awhile and we felt we were on the right path,

 

Unfortunately, we've hit a plateau or another setback.. He was exposed to Strep that was missed for awhile, We've added Amox to his cocktail and it's too early to tell but he seems to be improving.

 

My son has not been to school for the most part of a year. My daughter is still on orals but may be put on IV soon. She continues to go to school but has terrible back pain and cognitive problems but so far, we have not seen any auto-immune abnormalities.

 

I was also diagnosed and think that I may have passed it to the congenitally despite their healthy baby and toddler years. We live in a very endemic area and I grew up 10 miles from Lyme Ct.

 

I thought I'd get this out there. As I said, we're treating for Strep now -- he remains on Rocephin and orals and we have appts. next week week.

 

Thanks,

Jen

Edited by jeninma
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Jen,

I wish I could gather all of us Lyme + PANDAS families into one room. There are lots of us out there, although there are days when I feel like I'm the only person on earth dealing with the insanity of these illnesses.

 

Just thought I'd send some encouragement your way -- you are not alone!

 

My DS14 was dx with PANDAS 1.5 yrs. ago and 4 docs agreed he needed IVIG. Insurance refused to pay for IVIG, so we were forced to find alternative help. We then found a doc that uncovered Lyme, Babesia and Bartonella in my DS14. We treated with orals for 8 months with very little improvement. In January, my son had a chest port implanted and has now been on IV antibiotics and IV antifungals for over 2 months. I am almost afraid to say it outloud, but he is improving. It is beyond our comprehension that he could possibly get better after dealing with not-so-obvious symptoms for so many years. When he was 7, we were led down the psychiatric, behavioral, special ed path with diagnoses of Asperger's, OCD, Anxiety. It is nothing short of a miracle that his psychiatric and social symptoms are improving with IV therapies.

 

And then there is my DD12 who presented with a complete different set of symptoms - Endocrine and GI issues. She was dx with Lyme, Babesia (WA1) and Bartonella (has the stretch mark rash) by the same doc. We treated with orals for 10 months with little improvement. She had a chest port implanted 3 weeks ago and is now on IV abx and IV antifungals. No improvement yet, but we are hopeful. She initially presented with Hypothyroidism and GI issues. My days are busy as my children (between them) receive 38 infusions a week.

 

Subsequently, my husband and I were both dx with Lyme and co-infections last summer as well. So I am left wondering if some of this is congenital. I guess we will never know.

 

I hope you continue to uncover the help that you need for your children. Thank you for sharing your story - it reminds me that I'm not alone in this journey.

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Jen,

My daughter(10) is also receiving IVIG. She has lyme, bartonella, and PANDAS (PANS). We see the same doctor(s)- I think. I hope you see continued improvement in your son with the addition of Amox. You can send me a private message if you have any questions.

 

I was wondering if you continued with the Rheumatologist after the lyme diagnosis and what their reaction was to the lyme? My dd is scheduled for a rheumy appt. in two weeks and I am worried about what they will say regarding her chronic lyme treatment. Her LLMD recommended she see someone.

 

Again, thanks for sharing your story. I wish better days for your entire family soon!

Edited by philamom
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