Appt. with LLMD and now DS symptoms ramping up

[JuliaFaith]

After 8 mos. of flu-like symptoms and PANDAS diagnosis we are seeing an LLMD because not getting better.

 

After being off abx for 2 weeks for lyme testing and miraculously getting an appt. this Fri. at LLMD office his flu symptoms are feeling much worse today. He has not picked up any addl symptoms other than the ones that have not gone away in all this time (they are just much worse). Now not sure if we have to get on abx right away (per PANDAS dr) and re-schedule lyme appt. They wanted to do urine and saliva tests but said he had to stay off abx. Note sure if he can hold steady or will improve in the next 3 days or will get worse without abx. All we know so far is that a cough triggers his PANDAS but this time there is no cough so do not know what to expect.

 

Any thoughts?? Thank you!

[lyme_mom]

I would not cancel the llmd appt because if this is Lyme you don't want to wait. They can deal with this-just call them and explain what is going on. Good luck!

[JuliaFaith]

I would not cancel the llmd appt because if this is Lyme you don't want to wait. They can deal with this-just call them and explain what is going on. Good luck!

Thank you for your insight! You make a good point. If we have to re-schedule it would be far into the future for another appt.

 

Best health wishes your way!

[dut]

Yeh - I would ring and see if they can do the testing now and still keep appointment for fri. Then if you feel you must, you could go back on the abx as soon as the blood is drawn?

 

good luck

[JTs-Mom]

Have you already tested for Mycoplasma Pneumoniae? What abx has your son been on? Just curious because you mention a cough (though not this time). That was my son's primary symptom for MP.

[JuliaFaith]

Have you already tested for Mycoplasma Pneumoniae? What abx has your son been on? Just curious because you mention a cough (though not this time). That was my son's primary symptom for MP.

He has been tested for MP at least 3 times and it has been neg. each time. He has been on Biaxen about 3/4 times for 10 days and once for a month. I think we did a z-pac at least once as well. None have reduced his continuing symptoms (except maybe after getting the cough until he is where he was before the cough). Good that you know the underlying infection. We keep looking and hoping for something to show up (besides PANDAS). 5-day steriod bursts have not done anything except make him feel worse.

 

This is why we are checking out LLMD. Thanks for the input.

[JuliaFaith]

Yeh - I would ring and see if they can do the testing now and still keep appointment for fri. Then if you feel you must, you could go back on the abx as soon as the blood is drawn?

 

good luck

Will give this a try. Will keep you posted on all of this when we get more info. It was amazing that we got the appt. However, it is with someone else (other than the main dr.) in the office since the dr. is practicing in Europe for November.

 

Thanks Dut and take care.

[sf_mom]

My older son's first and last TIC was a cough!!!!!! I'll admit my husband forgot to give him one of his antibiotics for two weeks..... and his cough reemerged and is now resolving again. Our mycoplasma was also negative, positive DNA Lyme, clinical symptoms Bartonella.

 

I'd keep LLMD appointment as recommended by others.

 

-Wendy