Dx Lyme - after PEX for PANDAS

[RNmom]

Actually I think this is post #3... To quickly summarize: My ds14 had catastrophic PANDAS January 2010, PEX last July 2010, and was diagnosed with Lyme disease and possible Bartonella in October 2010. This is my 3rd update to medical treatment with "double dose" Bicillin shots every 4 days for a PANDAS relapse that began one month after initiating Doxycycline and Diflucain for treatment of Lyme. (His LLMD says high dose Bicillin every 4 days x 4 is his "peferred treatment for PANDAS and also a pretty good treatment for Lyme as well.") DS14 had testing through My Lyme ID in October which showed three (high) equivocal bands for Lyme and lots of positive cytokine responses. We are now waiting for results from recent Igenex testing for further confirmation of Lyme and Bartonella (ds14 does have the Bartonella rash). He also has positive Candida, Mycoplasma, and EB titers (all IGg).

 

Today, ds14 came downstairs for breakfast asking, "When is my next shot?" He said "the shots" do not take everything away but they are helping him to deal with all of "it" better. ["It" and "everything" both refer to: intrusive thoughts that are graphic, frightening, and unfold endlessly against his will, brief bouts of rage that leave him feeling ashamed (this symptom is new this past month), OCD, involuntary movements and neurologic tics, terrible anxiety, visual disturbances, brain fog, cognitive changes, and difficulty concentrating and focusing on tasks, and difficulty falling asleep.]

 

Truthfully, although ds14 says he "feels better" (and I am so glad to hear that) he looks terrible! He is wiped out, the red rash is awful (but the neck is still not so bad), and he is really struggling to get through each day at school. Today, he dragged himself to school late - but he got there and stuck it out the whole day. I got several very kind e-mails from his teachers. I thank the Lord for a caring and supportive school. (Believe me I do realize how grateful I should be for that.)

 

Bicillin shot #4 will be tomorrow due to the holiday schedule. We will talk at greater length with his LLMD next week. We will also follow up with his PANDAS doctor (we do not want to get too far afield of her). I wanted to post this to give some hope to the folks reading who, for their own reasons, are interested in the possible benefits of Bicillin (particularly for a PANDAS / Lyme combination). Time will tell if this will be a helpful intervention for our ds14. Tonight it looks promising. He will still have a long way to go however.

 

One additional note. We, like everyone else on these forums, are attacking these illnesses with many layers of treatment. We added in another layer this afternoon with a nutritional consult for the Glutin free, casine free, yeast free diet that ds14 is now on. It was very helpful. Happy Thanksgiving everyone!

Edited November 24, 2010 by RNmom

[matis_mom]

Actually I think this is post #3... To quickly summarize: My ds14 had catastrophic PANDAS January 2010, PEX last July 2010, and was diagnosed with Lyme disease and possible Bartonella in October 2010. This is my 3rd update to medical treatment with "double dose" Bicillin shots every 4 days for a PANDAS relapse that began one month after initiating Doxycycline and Diflucain for treatment of Lyme. (His LLMD says high dose Bicillin every 4 days x 4 is his "peferred treatment for PANDAS and also a pretty good treatment for Lyme as well.") DS14 had testing through My Lyme ID in October which showed three (high) equivocal bands for Lyme and lots of positive cytokine responses. We are now waiting for results from recent Igenex testing for further confirmation of Lyme and Bartonella (ds14 does have the Bartonella rash). He also has positive Candida, Mycoplasma, and EB titers (all IGg).

 

Today, ds14 came downstairs for breakfast asking, "When is my next shot?" He said "the shots" do not take everything away but they are helping him to deal with all of "it" better. ["It" and "everything" both refer to: intrusive thoughts that are graphic, frightening, and unfold endlessly against his will, brief bouts of rage that leave him feeling ashamed (this symptom is new this past month), OCD, involuntary movements and neurologic tics, terrible anxiety, visual disturbances, brain fog, cognitive changes, and difficulty concentrating and focusing on tasks, and difficulty falling asleep.]

 

Truthfully, although ds14 says he "feels better" (and I am so glad to hear that) he looks terrible! He is wiped out, the red rash is awful (but the neck is still not so bad), and he is really struggling to get through each day at school. Today, he dragged himself to school late - but he got there and stuck it out the whole day. I got several very kind e-mails from his teachers. I thank the Lord for a caring and supportive school. (Believe me I do realize how grateful I should be for that.)

 

Bicillin shot #4 will be tomorrow due to the holiday schedule. We will talk at greater length with his LLMD next week. We will also follow up with his PANDAS doctor (we do not want to get too far afield of her). I wanted to post this to give some hope to the folks reading who, for their own reasons, are interested in the possible benefits of Bicillin (particularly for a PANDAS / Lyme combination). Time will tell if this will be a helpful intervention for our ds14. Tonight it looks promising. He will still have a long way to go however.

 

One additional note. We, like everyone else on these forums, are attacking these illnesses with many layers of treatment. We added in another layer this afternoon with a nutritional consult for the Glutin free, casine free, yeast free diet that ds14 is now on. It was very helpful. Happy Thanksgiving everyone!

So glad to hear it's working! Your posting gives me great hope

We are waiting for dd's bicillin to arrive in the mail... (we had to go through the mail-order service because for some reason they are not covered at the pharmacy, but they would be covered at the hospital, but dd does not want to do it that way so we'll do them at home...)

[sf_mom]

Step in the right direction! I too have heard wonderful things about the effectiveness of bicillin shots for Lyme. Glad to hear he is feeling better.