Summer3
Frequent Contributor (1K+ posts)
Member # 35286
posted
I need help figuring out what's going on. In the past few months I lost my LLMD and went off abx completely. I can't afford another llmd, so I need to self-treat. That's not optional right now for me.
I started to get VERY sick 3.5 weeks off everything so I very carefully planned out herbs. I started them five weeks off everything and by that point I was barely able to get up from bed. Things were going the same as usual. I wasn't improving, but I was getting closer to my typical level (that I had maintained on abx long-term).
Right before being dropped I was transferred to a cardiologist for fainting and irregular heartbeat. My echo was normal, my event monitor showed pvc's pac's, atrial runs, sinus tach, svt, sinus arrhythmia, etc.
He prescribed Toprol once a day. My heart palps were rebounding strongly and I fainted in a car so he increased the dose and added Florinef.
Then I got strep the day after starting Florinef. My fainting tolerance got lower and has stayed low now after the fever is gone. I'm on erythromycin, but the increased fainting started prior.
I'm also having increased neuropathy, headaches in the morning, night sweats, etc. All are not "normal" for me.
I can't tell what's going on. I had to go off my Lyme herb plan. I'm only on A-BART at the moment because my schedule got messed up from strep.
I go back to the cardiologist soon. I can't tell what's a side effect, what's from strep weakening me overall, what's from Lyme herxing or progression.
My symptoms are out of control and the heart medications have lots of side effects so that confuses me more. The cardiologist is no help and comes in for less than five minutes so I pretty much need to figure this out before I go so I can clearly state what I think is happening and what I want him to do.
Right now I don't even know my diagnosis from the cardiologist. I believe it's svt and narrow complex tachycardia. In my opinion I have some type of ANS dysfunction but have not been tested (although my treatment seems to match up anyway).
Any ideas of what I should do? I fainted this morning, and I will almost every afternoon (or get close). I've tried food, water, herbs, etc. Eating large meals is a trigger sometimes. I think it's bp related since I've caught mine at 85/45. I also have problems with fevers and weather intolerance thus my ANS theory.
beths
Frequent Contributor (1K+ posts)
Member # 18864
posted
My AND was affected by babesia-have you treated for that-do you drink a lot of water with some salt in it? These things should help
Posts: 1276 | From maryland | Registered: Jan 2009
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Summer3
Frequent Contributor (1K+ posts)
Member # 35286
posted
Yes, I eat and drink a LOT of salt. I crave it constantly. I have treated Babesia and still am.
Sorry to hear about the fainting issues you are having.
It was a major, major issue for me as well a couple of years ago - I passed out quite a bit walking around, or was faint/dizzy quite a bit. (The lyme is in a bit more control now so I am not taking medication for this anymore)
And just like you I had an absolute craving for salt - I still do, but not as much - I still put salt into my drinking water during the day.
I did have a positive tilt table test when I was having the fainting issues (have you had that test)?
About your medication, I did something similar.
I was started on Fluronef and a beta-blocker (can't remember which one, but Topol is a beta blocker IIRC) and it didn't help all that much.
My cardiologist switched me from the beta blocker to Midrodrine (which is a vaso-constrictor) and I did remarkably well on it - the effect was pretty immediate, dramatic and helped me get back on my feet. http://www.medicinenet.com/midodrine-oral/article.htm
Maybe check with your cardiologist about changing meds? Not sure if this will help you specifically, but thought I would share my experiences.
Today - have had on and off issues with blood pressure/feeling faint - but taking licorice root daily seems to have stabilized that.
Thoughts and prayers for you.
Posts: 118 | From New England | Registered: Apr 2013
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posted
Just to quickly add, reading your post again.
When I was having the really awful fainting/dizzy spells, it seemed like every other symptom I had was magnified. Once I got the fainting under some more control, I felt a lot better across the board.
You may see the same, I am hoping
Posts: 118 | From New England | Registered: Apr 2013
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Summer3
Frequent Contributor (1K+ posts)
Member # 35286
posted
I have not had a tilt table test. They don't even have that type of equipment in the area. I'm in a VERY rural area.
I have heard about midodrine. My concern is that I'm covering things up. When my beta blocker wears off, I get extreme heart palpitations. They are worse than the severity they were prior to taking any heart meds. That scares me. I feel dependent on the meds and they are NOT curative.
posted
you need to get to a POTS/Dysautonomia specialist.....where are you located?
Posts: 871 | From orange county, ca. | Registered: Jan 2006
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Summer3
Frequent Contributor (1K+ posts)
Member # 35286
posted
I never tested positive for Babesia, but I never did any of the tests that are likely to detect it from Fry labs or Clongen.I think I definitely have it along with Bartonella. I don't think the cardiologist will care what I have in terms of infection though...........lol. He was speechless when I mentioned that I was concerned about taking a steroid (Florinef) because of it's possible negative effects on active infections (Lyme).
Where would I search for a dysautonomia specialist? I haven't been diagnosed with that (or anything) yet. The cardiologist briefly mentioned the SVT and "narrow complex tachycardia" that was it.
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
You need a better cardiologist promptly. As sk8ter said, you need to get to a POTS/Dysautonomia specialist. Clearly, you have POTS/Autonomic Dysfunction.
DO NOT be worried about taking Florinef; it is not the kind of steroids that you need to be worried about. Plus, if you pass out,
that is much, much worse than taking Florinef, which is not a problem anyway. Lots of well-known LLMD's rx it for their Lyme patients.
You can pass out and hit your head, which is the real concern.
Midodrine is another med given for this. What works for a person is quite individual. The beta-blockers help by lowering the high heart rate, when your body is trying to get your low BP up.
But you need a doctor who understands this problem, who can test you, who will spend time with you, and who is responsive
when you have problems. Frankly, your life depends on it right now. Whatever you have to do to find and see such a doc is
necessary. This can be life-threatening otherwise, due to the low BP, high heart rate, and fainting.
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