PANDAS son off to Lyme doc today

[Iowadawn]

Good Morning!

 

Well, this appt finally came. We are off to an ILADS doc today. Say a prayer. I go with an open mind, though I am skeptical. We have our IGeneX tests in hand. The Babesia FISH was positive. Dukes mixture on Bb and Bartonella IgM titer a little outside normal level.

 

Off we go. I am taking my sister for a second set of ears since my husband is unable to come along. Later. Dawn

Edited September 22, 2010 by Iowadawn

[lyme_mom]

Good luck. It is not easy to get a positive babesia test so that is a definite positive. Babesia can cause all sorts of problems including psychological symptoms. Other symptoms can include thigh cramps, sweats, fatigue and air hunger. It is pretty common for patients to be infected with multiple tick borne illnesses b/c the ticks are sewers. The presence of even one lyme specific band or indeterminate lyme specific band is an indication of exposure to lyme. This combined with a positive babesia test is reason enough to do a trial treatment for lyme as well to see if symptoms improve (if the ilads doctor wants to do this). If there happens to be an indeterminate band 31 you can do a follow test through igenex to see if it is really positive. Good luck- these ilads doctors are very good at treating multiple infections.

[cobbiemommy]

Dawn,

Good luck. Lyme Mom said what I wanted to say. The presence of even some of the Lyme Bands does indicate the presence of Borrelia and should respond favorably to the right antibiotics. I believe that Babesia responds to antimalarial drugs. DS, 11, is about to start second month of Borreliosis treatment after cognitive gains the first month. Good luck.

Cobbie

[Iowadawn]

Well--My son has PANDAS and Lyme, & Babesia, Bartonella. We were told we have essentially been treating the Lyme halfway for the past two years. The abx & IVIG's have all been beneficial, just not enough. The source: probably me. I'll find out in 3 weeks. This doc refers to dr. K and Dr. K refers to him. That made me feel good. He is involved with Dr. Cunningham's work with Lyme. He has studied some with Dr. Jones. He had a band 31 show up--Bb specific & shows that he has had it over 1 year. Babesia FISH was positive and IgM of Bartonella. His clinical picture fit. Dawn

[lyme_mom]

Well--My son has PANDAS and Lyme, & Babesia, Bartonella. We were told we have essentially been treating the Lyme halfway for the past two years. The abx & IVIG's have all been beneficial, just not enough. The source: probably me. I'll find out in 3 weeks. This doc refers to dr. K and Dr. K refers to him. That made me feel good. He is involved with Dr. Cunningham's work with Lyme. He has studied some with Dr. Jones. He had a band 31 show up--Bb specific & shows that he has had it over 1 year. Babesia FISH was positive and IgM of Bartonella. His clinical picture fit. Dawn

Wow!-the poor guy. You are lucky that you know b/c so often a patient has the symptoms but the test results do not show the infection. I don't know anyone who tested positive for all three but I know many who have been treated for all three, including our family. The good news is that you will start to see real results but it will take a little time.

[norcalmom]

dawn,

what was the pattern after ivig with him? ds has a cough at 7 weeks post (Dr K) and has had a horribly pandas-y day. DS was progressing well up unitl this point. We did not do a lyme test prior to ivig (regrets now!) by the time all the lyme discussions were happening I was on my way to chicago.

I'm glad you've uncovered the culprit - please keep us updated on how he is treated!

best,

k

[KeithandElizabeth]

Hi Dawn:

 

I am glad you found a good doctor to help your son.

 

I just want to give you some hope.... when we started to treat the lyme, bartonella and babesia with our children, their PANDAS symptoms slowly went away when the typical PANDAS treatment of IVIG and one antibiotic did not do the complete trick and our son kept relapsing.

 

The road can be bumpy, especially the first few months, but we are amazed at how successful the treatment has been for both of our children.

 

 

Elizabeth