Haven't been here in a while and unfortunately that's not because I'm doing any better health-wise. I had my autonomic testing the other day with a general anti-Lyme mainstream autonomic neurologist.
They turned my pacemaker down to 40 before the tests so it wouldn't interfere. I have a special paceamker that reacts to both low heart rate and low blood pressure to help control my fainting, heart pauses, heart rate drops and bradycardia.
I did a nerve conduction test, had no sympathetic response on my foot and markedly reduced on my hand, under the 5th percentile for deep breathing heart rate response and while doing orthostatic BP readings my BP became undetectable/0 upon standing which freaked them out.
Surprisingly the neurologist attributed my "severe autonomic neuropathy and small fiber neuropathy" to a Lyme infection and wrote that on the notes twice. Of course he's not treating it or admitting that it's active or chronic, but he also shockingly didn't try to diagnose me with MS or any other neurological or psychological conditions. He's not requiring a follow-up because he's so confident in what's going on but he said it's an extremely unusual case and is having consults from all over the country arranged.......for autonomic dysfunction NOT Lyme.
So in terms of what's going on with that hospital/mainstream system, I'm back into full care of my electrophysiologist and the neurologist didn't have too many suggestions of what could be done differently. So my EP spent hours trying to adjust the pacemaker to be more effective.
I have very mixed feelings about this appointment. I'm actually very happy that I failed all the tests strongly because it proves that something medical is the cause of why I feel like crap every single day. However, the results are devastating to me and not easy to take in. I didn't think things were as bad as these doctors seem to think. I didn't think I was unusual. They have also told me that this will NOT go away. It doesn't matter what type of treatment I do. It's permanent. That's hard to accept. If symptomatic treatment would help and control my symptoms it would be one thing, but I have very poor control even on their BP and heart rate meds.
So others can be on the lookout...this is how my autonomic symptoms progressed. I've had numbness in my hands and legs and severe weight loss since I first got sick with Lyme and Babesia. Then my heart started going into weird rhythms: inappropriate tachycardia, tons of PVC's, SVT, etc. Then abruptly I started dropping into the 30's for heart rate and soon after my heart completely stopped in 2nd degree block. All along I've had random drops in BP from normal 110/70 to undetectably low alongside fainting. I also can't regulate temperature. I'm hot/overheating in sub-0 temperatures and freezing in 90 degree weather.
And just to add...I'm not new to treating Lyme. I've done virtually every treatment available/affordable to me. Herbs, co-infections, long-term oral antibiotics, yeast treatment, mold treatment, thyroid treatment, detoxing, etc. I have never had IV's. Despite a positive test and continually progressing heart block I have never been offered even the 1 month of IV Rocephin and I cannot afford to pay out of pocket for it (or a doctor who can prescribe it).
So basically I'm screwed.
Posted by Told you I was sick (Member # 35068) on :
Aside from having a pacemaker -my specific form of vagal nerve disruption does not make me a candidate for one- Summer's story save only a few tweaks is essentially my story. Unfortunately, atop of the heart symptoms described, I was also diagnosed with an extremely rare neurological condition that involves those small nerve fibers in the hands and feet. It has been woefully painful. The severe form of ANS dysfunction has also caused damage to my digestive process whereas food does not break down in my body as it once did. I won't get into the nitty gritty details here -after all, it is Summer's post,- I just wanted to second what she had said, and confirm that her progression has in fact already been experienced by another here within this group. Oh, and by the way; atop of these goodies, I also have low VO2 uptake during physical activity, so, you can go ahead and cue the CFS (systemic exertional intolerance) diagnosis as well, as this, too, is a part of my clinical manifestation.
Ironically, when the $hit really hit the fan with all of this 11 years ago now, I too wasn't offered a lick of any sufficient treatment. When my tbd diagnosis actually came in 2010, I was given years worth of orals and IM treatment, but, due to the controversy in treatment, the IV route was only danced around with me.
It can happen to you too, people.
Summer- I am an otherwise friendly female -though my husband might at times debate otherwise...wink, wink- so, if you'd like to connect about any of this to commiserate, please just PM me. If helpful to know, I'm a middle-ager.
I am very sorry to hear of your similar plight.
Told you...
Posted by Told you I was sick (Member # 35068) on :
And isn't it quite telling that Summer and I first turned to this Forum at roughly the same time...registering with the LymeNet Group just one month apart??? Surely, she and I were on similar paths with our infectious illnesses!
Posted by Theresa (Member # 421) on :
Thank you both for sharing and trying to help others. I have demylinating polyneuropathy. Confirmed with emg with axonal damage. Autoimmune test positive. I'm on iv doxycycline orals and ivig for the autoimmune. I'm on medicare and they are paying for most. So far no improvement. It's been 3 months. I'm in fear of it turning for the worse. What were first symptoms before it turned to autonomic .
Posted by Lymetoo (Member # 743) on :
Underscores the NECESSITY of IV meds when the heart is involved.
Really tragic.
Posted by Summer3 (Member # 35286) on :
Told you I was sick,
I'm in the northeast as well. My electrophysiologist and the neurologist I saw were both from the major hospital system in NH.
I actually like my EP......even though he's anti-Lyme. He is 10,000x better than the neurologist I saw. He treats me for autonomic dysfunction aggressively, and after I proved myself via test results and photos MANY times, he has started to listen to me and take me seriously which is rare for a cardiologist when it comes to young women.
I am not against separate treatment for autonomic neuropathy....particularly because long-term Lyme treatment has not made a significant dent in my symptoms. However, unlike someone with diabetes or another chronic condition, medications are not managing my symptoms well. So my quality of life is very very low and there are no other options left for me to try. I was not expecting the neurologist to address Lyme, or even attribute this to Lyme. I just wanted some kind of help. I still left with none. Abnormal tests but no new ideas. It's very discouraging.
Theresa, my symptoms all started within weeks of the initial tick bite in September 2011. It began with a severe fever and pin-prick red rash. Quickly I started having moderate joint and muscle pain, headaches, twitching, numbness in my hands, a fast heart rate, horrible non-stop PVC's in bigeminy and triplets, tremor, temperature intolerance, blurry vision, etc. I was dropped by my first LLMD and lost access to even oral antibiotics.
I did herbs alone for a year. My heart then suddenly went from only fast and PVC's to bradycardia in the 30's. I had a hard time getting my cardiologist to listen to me at the time (I think he thought I was a young anxious hypochondriac) so I got an implanted heart monitor. Soon after, I flagged one of 100's of fainting episodes and my heart had stopped.
Fainting is probably my most dangerous bothersome problem. I faint from my rate dropping too quickly, from a slow heart rate, from my heart stopping and from my BP dropping out for no reason.
Posted by droid1226 (Member # 34930) on :
Terrible.
It's almost like a guy on the street punching people and the police try to arrest the hand of the guy. Why all the band aids when you know the source of the problem?
I did weeks in the hospital with PVC's in bigeminy and a core temperature of 92. I had spells of 210/130 BP and BPM dropping into the 40s. Also, Dr after dr asked me of drug use or withdraw from it. It was also in September of 2011. But I had symtoms for yrs leading up to that.