Trinitybella? Ophelia?

[rowingmom]

Wonderful, wonderful news for both of you Ophelia and trintiybella! At long last!!

[T_Anna]

Great news!!!

 

Keep us updated.

[frikfrak]

Hi,

 

Great News...it just so happens I have an appt. in Jan. for my DS with Dr. C....now I'm really excited.

[T_Anna]

What dose of Minocycline are they prescribing?

 

T.Anna

[Guest]

I haven't been online b/c I'm having such a hard time with the minocycline. Just taking 50mg feels like a nuclear bomb of sleepiness + drowsiness is going off in my brain. I can handle this at night time b/c that's when I need to sleep but they have prescribed it for twice a day. If I take it during the day, good lord, my entire day is ruined, I just lie in bed having horrible ocd (fatigue and sleepiness and being stuck in bed really trigger my ocd).

 

Being a CFS patient, all I can say is we are insanely sensitive to medication and we have to start things low and take them slow. Does anyone know if I can just take it at night? ...in regards to reducing neuro-inflammation. It's pretty brutal so far but I am taking it every night. I feel sedated the next day as well so I know it's still in my system (long acting drug).

 

I don't think treatment is going to be easy.

 

Also, they are doing a lot of bloodwork to look for the autoimmune culprit but so far nothing showing up - everything looks normal (except all my brain scans, cytokine levels, T-cells, etc). But we know it's not based on the PET scan, and symptoms. (Dr. C is looking into autoimmune diseases which I also think is going on). I have all the symptoms of lupus, the rashes, but absolutely nothing shows up in the labs for that. He is still digging, I have more labs to be done in my city - insurance company is rearing it's ugly head.

[qannie47]

Hopefully, It will take just a little while for your brain/body to adjust to the meds...Did you ask Dr. C about this? I am really happy that you now have someone in your court that is willing to do the work to find you your answers!!! No, it does not sound like this is going to be an easy path....but then again, I have found that the best things in life never seem to come that easily.....Keep the Faith!!! Your in great hands...

[JoyBop]

I agree with T. Anna, hang in there, you are finally in a place that will see to it that you are taken care of!

Have you called the Dr. yourself and told him how awful this is making you feel? You could ask about taking it once a day for starters, or a smaller dose twice a day. Or maybe he would change the medication all together. If not, at least you would know that you are in the best of hands and that this will all be worth it in the end.

[Guest]

Thanks for the encouragement guys! I did email him, just waiting on response. For now, I'm taking it at night which is working out fine, makes me drowsy which is what an insomniac needs.

 

I did ask if I could do a smaller dose during the day.

 

Thanks @qannie - I was feeling terribly depressed these past couple of days so it's good to be reminded that i have someone doing the work for me, on my side!