Summer3
Frequent Contributor (1K+ posts)
Member # 35286
posted
I haven't fainted or even come close very much this week. I'm taking Florinef, Midodrine and Toprol. Unfortunately I am having some negative effects.
I keep getting fevers and sicknesses while on Florinef. I'm worried it's causing immune suppression even though doctor's insist it isn't. Since taking it, my lymphocytes dropped really low and that's the same cell that would drop with immune suppression from drugs like prednisone.....
I have no appetite since starting midodrine which is concerning since I'm already too thin. I'm also very wiped out which is probably the result of not eating enough. But at least I'm not collapsing and hitting my head on tile floors like last weekend.
I'm going to meet with a new LLND. I'm very nervous because I have already tried every oral antibiotic and most herbs. I don't know if there's anything this doctor can do. However, I don't want to be on medications forever or be a lab rat for Dartmouth neurologists. I thought I could try to treat things symptomatically, but overall I'm headed in the wrong direction with mainstream doctors since losing my LLMD in the summer.
posted
Keep us posted! I hope the new Dr will be helpful!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96220 | From Texas | Registered: Feb 2001
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
As you've heard, there is no reason that Florinef or Midodrine should be causing immune suppression. YOur body may be getting used to it, but that is different.
Yes, thank goodness that you aren't fainting and hitting your head on the floor! Scary! That's majorly important.
I hope the new doctor can help you with treatment.
Posts: 3770 | From around | Registered: Mar 2008
| IP: Logged |
Summer3
Frequent Contributor (1K+ posts)
Member # 35286
posted
Well the new doctor will not be able to do anything stronger than what I've already taken. I'm pretty nervous because I don't think there is too much more I can try for Lyme/co-infections other than IV's which I can't afford. I've done pretty much all oral abx and most herbs. So I'm just hoping for any kind of suggestion.............
I go back to the cardiologist next week. This appointment is not the electrophysiologist/specialist that said I have autonomic damage.
I strongly dislike this cardiologist. He told me to take midodrine at night against the black box warning and has made many other mistakes as well. He never read the reports from my heart monitor, he didn't know I had an echo done (that he ordered), he called in a midodrine prescription incorrectly and every question I've ever asked him he has to look up on his iphone.
The specialist is several hours away so this cardiologist follows up/implements the plan. The EP told me if the 2.5 3x per day didn't work to tweak the dosing of midodrine. I can also double the dose of midodrine or go up in Florinef. I prefer midodrine because I can feel it work and it's short acting. When it wears off, I'm still getting a very strong fainting feeling. So right now I take 2.5 up to 3x per day. I'm thinking of asking the cardiologist to add another dose or two because it only lasts 2.5-3 hours for me.
posted
Summer, why don't consider trying Rife? I ran 6 hours of frequencies last night and woke up with a mild herx headache... heading for the coffee enema now. When Im not herxing Im feeling pretty well and this has been progressive improvement over the last 2.5 months.
I appears to be working. I use the GB4000 with MOPA. No antibitoics for me. I cant afford them anyway.
Posts: 803 | From USA | Registered: Oct 2013
| IP: Logged |
Summer3
Frequent Contributor (1K+ posts)
Member # 35286
posted
I am considering all possible options. Rife included. I was also looking into bee venom therapy but I need someone to supervise/direct it.
I have bad large local reactions to bees, but every natural sting does create severe herxing.....I'm just nervous to experiment with that on my own due to my reactions and being on beta blockers (epinephrine won't work as well while taking a BB).
posted
Rife would be far better than bee venom. IMO
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96220 | From Texas | Registered: Feb 2001
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
As you've heard, there is no reason that Florinef or Midodrine should be causing immune suppression. YOur body may be getting used to it, but that is different.
Yes, thank goodness that you aren't fainting and hitting your head on the floor! Scary! That's majorly important.
I hope the new doctor can help you with treatment.
Posts: 3770 | From around | Registered: Mar 2008
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/