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Hang in there! We are doing well

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I just wanted to share with you that we just got back from an appt with Dr. B for DS17, who has been seeing Dr. B for 4 years now and has been receiving IVIG for over 3 years.


Some of you know the very dark times we have been through - which is very similar to what many of you have been through.


Over the last year we have increased the frequency of his IVIG and that seemed to help him a bit, but he was still having extreme fatigue, brain fog, and irritability in general and then even more symptoms just before and just after IVIG.


Most recently, Dr. B changed his abx to doxy and rifampin and we started seeing some energy within one week. Within 2 weeks he was back to doing things with friends one night a week. By 3 weeks he was back at the skate park. Somewhere around 4 weeks he asked if he could have a tutor for earth science, since he did not get a very good grade on the final exam last year and he wants to take it again this year to try to improve his grade. Shortly after that he took a tour of the voc tech programs and decided to do a full day of school next year plus summer school this year to try to catch up on the classes he missed when he was on home instruction last year and try to graduate on time.


Needless to say, Dr. B was happy - as were we.


My son is making his confirmation this week, and it will be the first thing he has successfully started and completed in 4 years. I am so thrilled.


Last year at this time I told a friend that i had accepted the fact that he would likely live with me for many years to come as I could not anticipate him ever being able to work enough to support himself. Today, I am feeling confident that he will one day be self-sufficient.


He certainly still has a ways to go, and I understand that. Most of his friends are driving, have jobs, girlfriends, and are racing to get high scores on SATS. That is not his life, but his life is also not spent in bed or in front of the TV.


Hang in there, everyone. Hang in there. Our kids are still a work in progress.


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Fantastic News!!


It is always amazing to me how certain combinations of antibiotics can be so helpful. It has been our experience under the guidance of LLMD that when things plateau or regress we typically switch at least one antibiotic or sometimes do a complete rotation of antibiotics and recovery takes off again (minus the herx). With 3 children suffering from chronic infections we have experienced this type of turn around many, many, many times.


I can't wait for the next update as I sense the improvements will continue.

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  • 2 weeks later...

Great news. So in the end do you think this is Lyme/bartonella?

I really believe he had multiple pieces that led to his immune cascade. He has had chronic sinusitis since birth, was deficient in pneumococcal titers (contributing to the sinusitis), had a sinus mucocele that had infected his ethmoid sinus for several years before it was detected by Dr. B in 2010 and was then removed, probably had bartonella brewing and unable to fight it off for some time due to his immune deficiency, and finally had H1N1 in the fall of 2009 - which led to a marked deterioration in school performance and led us to start searching for answers in January of 2010. My dear friend on this forum, LLM says it is like peeling the layers of an onion and it truly is. Each of our children has different layers, but they all need to be peeled away very meticulously until we get to the core.

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