Treating Lyme Disease In Children

[JoAnnT]

Hi Everyone,

 

I am relatively new as a poster to Latitudes. My daughter is 15 and recently diagnosed after 3 years of "nothing is wrong with her" with Lyme Disease and Bartonella.

 

We are seeing a wonderful Doctor. He has her on minocycline, azythromycin(sp?) and Tindamax. She started the 2nd week in April and sleeps about 17 hours a day now. . .

 

Has anyone else experienced this amount of sleep?

 

Has anyone decided to forgo antibiotics and request IvIg instead?

 

If you have, how do you get Insurance to cover it and what has been your experience?

 

Thanks,

 

JoAnn

[Chemar]

Hi and welcome

I moved your post from PANDAS forum to the Lyme forum as you are more likely to get relevant replies here

[Orion]

 

Has anyone else experienced this amount of sleep?

 

Has anyone decided to forgo antibiotics and request IvIg instead?

 

If you have, how do you get Insurance to cover it and what has been your experience?

 

So sorry to hear that your daughter is so ill, but it sounds like she is finally on a path to wellness.

 

That amount of sleeping is not unheard of. As she heals, it will improve.

 

Unfortunately, IVIg is not a treatment for Lyme. It is used to help neutralize autoimmune processes that can be associated with Lyme. It is hard enough to get insurance to cover IV antibiotics, much less IVIg, if Lyme is the diagnosis, sad to say.

 

Your best bet would be to research what conditions your insurance will cover IVIg for, and then see if any of those Dx would apply to your daughter.

[lismom]

Fatigue is my son 15 worst symptom. Not necessarily sleeping that many hours though. Bartonella is a provider of insomnia for my son. But when he does sleep he will for 13 or so hours. It has been a struggle with Freshman year high school. We are a year into treatment. I have heard that some people just have to sleep. Whether they get up for a little while and then nap for hours, then function some more and sleep. Is this a result after starting the abx? Was she fatigued some before. When my son started abx so many symptoms ceased and the fatigued hit and was dibilitating. I had to pull him out of school for months. Since then he still has fatigue but from a year ago he has improved. He has lyme/bartonella.

[Bill]

Regarding "Has anyone decided to forgo antibiotics and request IvIg instead?"

 

To answer your question directly - you cannot forgo ABX and just treat with IVIG. Your daughter needs the ABX. The IVIG might augment treatment for your daughter but it will not treat the Lyme/bartonella bacteria. (Though do keep in mind I have zippo medical training beyond the school of hard knocks.)

 

Our son was (finally) diagnosed with Lyme/bartonella as well. We believe he also had PANDAS meaning the strep bacteria was in play. Not sure which came first. We are doing IVIG in addition to the same ABX your daughter was prescribed - but - we did not start IVIG until 10 months after starting the ABX.

 

Our reasoning is that one needs to fight the infections first. With the infections under control, we are hoping the IVIG will speed up the healing process. We have seen improvement every time he's had IVIG so perhaps we made the right decision. Perhaps we would have seen improvement no matter when we started though.

 

To give you perspective, my son began serious treatment for Lyme in October 2010. He had his first IVIG summer 2011. Next week, he will receive his 5th IVIG.

 

I should also mention that another reason IVIG was recommended for my son is that one of his primary symptoms was (is) dystonia or simply a lot of neuro-muscular issues. All slooooowly getting better.

 

My son never went through a sleeping phase like your daughter. He is 14 and likes to sleep 12+ on the weekends if we let him though. I would take the sleeping as a positive sign in that her body is now actively fighting the infection.

 

Best wishes, bill

[JuliaFaith]

Fatigue is my son 15 worst symptom. Not necessarily sleeping that many hours though. Bartonella is a provider of insomnia for my son. But when he does sleep he will for 13 or so hours. It has been a struggle with Freshman year high school. We are a year into treatment. I have heard that some people just have to sleep. Whether they get up for a little while and then nap for hours, then function some more and sleep. Is this a result after starting the abx? Was she fatigued some before. When my son started abx so many symptoms ceased and the fatigued hit and was dibilitating. I had to pull him out of school for months. Since then he still has fatigue but from a year ago he has improved. He has lyme/bartonella.

This is not a pleasant subject, but parasite/worm protocol that my ds14 was on for about a 1 1/2 months altogether at begin of treatment, really helped with his fatigue, by leaps and bounds, according to my notes.

[lismom]

Fatigue is my son 15 worst symptom. Not necessarily sleeping that many hours though. Bartonella is a provider of insomnia for my son. But when he does sleep he will for 13 or so hours. It has been a struggle with Freshman year high school. We are a year into treatment. I have heard that some people just have to sleep. Whether they get up for a little while and then nap for hours, then function some more and sleep. Is this a result after starting the abx? Was she fatigued some before. When my son started abx so many symptoms ceased and the fatigued hit and was dibilitating. I had to pull him out of school for months. Since then he still has fatigue but from a year ago he has improved. He has lyme/bartonella.

This is not a pleasant subject, but parasite/worm protocol that my ds14 was on for about a 1 1/2 months altogether at begin of treatment, really helped with his fatigue, by leaps and bounds, according to my notes.

 

 

I appreciate the info. My son has been on grapefruit seed in a slow titration for a year now, so I would hope that has been effective regarding parasites. He is taking this for bartonella and yeast.

[JoAnnT]

Fatigue is my son 15 worst symptom. Not necessarily sleeping that many hours though. Bartonella is a provider of insomnia for my son. But when he does sleep he will for 13 or so hours. It has been a struggle with Freshman year high school. We are a year into treatment. I have heard that some people just have to sleep. Whether they get up for a little while and then nap for hours, then function some more and sleep. Is this a result after starting the abx? Was she fatigued some before. When my son started abx so many symptoms ceased and the fatigued hit and was dibilitating. I had to pull him out of school for months. Since then he still has fatigue but from a year ago he has improved. He has lyme/bartonella.

 

Thanks alot. She was sleeping more than typical before, but not as much as since starting the abx protocol. Now it is a tremendous amount of sleep with periods of wakefulness and energy. She is pretty much missing these last few months of school, but summer is right around the corner.... so hopefully September will provide new energy. . . I did not realize the treatment would have such a long and profound impact. It is somewhat overwhelming, but if it means the treatment is working, I am all for it. Thanks for the reply. JT