VNA came this morning and we did first full dose of rocephin. (Did 1g at hospital yesterday.)
My LLMD and I want to start out slow because I always herx so severely, so we're infusing 2g 1xday this week. Next week will do 2g 2xday x 4 days, then 3 off.
My LLMD gave me an Rx for Actose to help with herxing sx.
Yesterday, I didn't have any noticeable herxing.
I have severe MCS and CFIDS that predate Lyme & co (due to chemical injury in 1995), so just going to the hosp and having all those exposures was a risk, but I did bounce back surprisingly well (or so it seemed).
Today, while nurse was here, during infusion, I lost my voice (one of my neuro Lyme/babs sx), my breathing went downhill, and my body pain became so severe I couldn't sit up.
I can't tell if it's all from herxing (definitely the muscle pain and voice loss are) or if it's a combo of being really sick from nurse's fabric softener fumes and severely sleep deprived or delayed payback from yesterday's exertions/exposures.
I've never tried actose before or seen anyone post about it, so I don't know if I should risk it or not.
Has anyone tried it? Did it help?
Did it cause anyone problems?
How do you know it's time to take it?
(My LLMD is away this week, so I can't discuss w/her.)
Thank you! -Sharon
Posted by bettyg (Member # 6147) on :
anyone? buried on page 2
Posted by WildCondor (Member # 434) on :
Actos made my blood sugar drop and made me feel absolutely horrible. I don't know if it really helps herxing. I know I'd rather herx than ever try Actos again.
Posted by Maryland Mom (Member # 2043) on :
I'm trying to understand how Actose would help with herxing sx, since it is for regulating blood sugar in diabetics, from my understanding.
Do you know why your doctor chose to prescribe Actose?
I would contact the company that provides your VNA, and make sure they are aware of your MCS and CFIDS. Your visiting nurse should be advised to refrain from using anything with fragrance that may aggravate your sx. Hopefully that will help in the future.
It will be hard to determine what is causing what sx, until these variables are eliminated.
I know that when I had my very first IV abx infusion, my herx began before the infusion was even halfway completed, and was severe, though my symptoms differed from yours, as did my medical history. Just wanted you to know that it is possible that you can have a significant response to your very first infusion.
Each of us is different, with different strains of infection, different immune responses, different coinfections, different medical histories. Therefore, our response to treatment will be different, as well.
Whatever the cause of your problems, I hope you are feeling better soon!
Posted by TerryK (Member # 8552) on :
Actos downregulates cytokines - at least that is my recollection. It is a gene therapy of sorts for those who have the HLA genotype where they don't make the antibodies to effeciently get rid of borrelia and/or mold toxins although because it downregulates cytokines, it probably helps herxing in most people I would think.
Dr. S's book Mold Warrior explains it. He has some websites too.
Take it in the morning so that if you have a low blood sugar you won't be asleep.
It has helped me. I take it with cholestyramine. I have no problem taking it. My sister can't take it. I can't remember for sure but I think she said it gave her a stomach ache.