HealingWell
Search Close Search
☰

Had a set-back. Your opinions appreciated. ***UPDATE***

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
1 2 3 4
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 10/16/2018 1:36 AM (GMT 0)

Dahlias said...
I'm sorry. I know how stressful those decisions are.

The possibilities are herx, allergy, or side effect, right? Do you have any allergies/an allergist?

I'm currently procrastinating on trying an antifungal related to Diflucan, which sent me to the ER last time. I will probably try it in the allergist's office. I've also taken a questionable medicine in the parking lot of the ER before. Not sure if either of those would be any help in your case.

I don’t have any allergies that I know of.

I guess I should assume herx - basing it on the lack of usual allergy symptoms? No itching.. no rash..no congestion.. IDK - can an allergy cause a CNS issue (arms shaking/jerking - seizure like), rapid heart rate, fever,and full body pain?

But maybe it was med side effects.

Is it ketoconazole, or itraconazole you’re switching to?

I’m not wanting to go to the ER because I’d have to tell them what I’m taking. Most Docs and Nurses don’t know anything about lyme/lyme treatment here. And those aren’t even typical lyme meds.
Who knows what they’d give me there - I did write down on a note what meds I’m on for my husband to tell them if I’m not conscious ...

And then there’s my kidneys.

Sigh
Posted 10/16/2018 2:13 AM (GMT 0)
I tend to think herx since it happened at the end of the week, for whatever that's worth. An allergic reaction usually happens right away, or when restarting a medication after a break, and those symptoms wouldn't be typical for an allergy. I don't know if side effects could build up later though. Are those known side effects for those drugs?

I got the impression you were avoiding the ER. Understandable.

PCP and then J clinic both prescribed alternatives to try -- voriconazole and clotrimazole. (I'd have to look to see which gave which.)
Posted 10/16/2018 3:26 AM (GMT 0)

Girlie said...
I’m more concerned about this:



https://www.ncbi.nlm.nih.gov/pmc/articles/pmc3771723/


(Dapsone-induced methemoglobinemia)

from the paper:
Two weeks before presentation she started 40 mg of prednisone once daily and 200 mg of dapsone once daily for a pyoderma gangrenosum flare.

prednisone -- this stuff is HORRID. I had the worst experience of my life on a single dosage. I wanted to go the ER but the only thing stopping me was I didn't want a $24k bill and then a doctor telling me "we can't do anything". Basically you can't stop this medication or risk an entire immune system failure so I had to keep taking it and lowering the dosage it was absolute horrible.

The entire fact that this "paper" doesn't comment about prednisone and side effects means I would say it is complete junk. The symptoms the paper describes are basically what happen to me after a single dosage (it starts high and then you lower it). Given you aren't on prednisone, I would not worry about it.
Posted 10/16/2018 3:36 AM (GMT 0)

oregonhay said...

Girlie said...
I’m more concerned about this:



https://www.ncbi.nlm.nih.gov/pmc/articles/pmc3771723/


(Dapsone-induced methemoglobinemia)

from the paper:
Two weeks before presentation she started 40 mg of prednisone once daily and 200 mg of dapsone once daily for a pyoderma gangrenosum flare.

prednisone -- this stuff is HORRID. I had the worst experience of my life on a single dosage. I wanted to go the ER but the only thing stopping me was I didn't want a $24k bill and then a doctor telling me "we can't do anything". Basically you can't stop this medication or risk an entire immune system failure so I had to keep taking it and lowering the dosage it was absolute horrible.

The entire fact that this "paper" doesn't comment about prednisone and side effects means I would say it is complete junk. The symptoms the paper describes are basically what happen to me after a single dosage (it starts high and then you lower it). Given you aren't on prednisone, I would not worry about it.

The methemoglobinemia was from the Dapsone though (brown blood)
Posted 10/16/2018 3:41 AM (GMT 0)
Oregonhay - methemoglobinemia is a risk of dapsone.

https://www.healthline.com/health/methemoglobinemia#diagnosis

“Other medicines that have caused this condition are:

dapsone (Aczone), which can be used to treat conditions like acne, a type of dermatitis that causes blisters on your arms and buttocks, and a fungal lung infection in people with HIV/AIDS
antimalarial drugs”
Posted 10/16/2018 3:13 PM (GMT 0)
Are you on levourcin (folate) injection or a good methlated oral? Paba?
Sulfa browned my blood ...
Posted 10/16/2018 3:38 PM (GMT 0)

bluelyme said...
Are you on levourcin (folate) injection or a good methlated oral? Paba?
Sulfa browned my blood ...

I’m on 10 mg of leucovorin per day on the days I take the persister meds.
My blood is still red when I have my labs done.
It’s easy to see the brown?? Is it obvious?
Posted 10/16/2018 4:43 PM (GMT 0)
Started a new thread - part 2

https://www.healingwell.com/community/default.aspx?f=30&m=4074681


Please don't post on this thread....see part 2 if you have a comment...
✚ New Topic ✚ Reply
1234