What about Vasovagal syncope, and mulitiple diagnoses?

[Remmel]

My wife 5 years ago, immediately after Open Fundoplication Surgery for severe Gerd,,,and a tentative dx of Celiac disease,,there was the development of constant syncope episodes now for the past 5 years, many trips to the ER when she fell ill numerous times, especially in heat situations. These epidsodes left her with often migraines of a Classic, and Vestibular Migraine status with motion sickness, and upon Ambulance arrivals to the ER multiple times with these syncope events, ,EKG's, and blood work revealed a relatively normal some 20 minutes or so later, but the worst case involved a heart rate of the lower 30s', and a normally hypertensive BP around 160/90 dropped to more like 90/40,,bradycardia.  Subsequent syncopes were common, sometimes a many as 2 or 3 times per day, but Holter monitors revealed no heart condition. She did have on occasion slurring of speech in the initial moments preceeding the syncope events, but upon arrival of the EMS crews, within minutes she gradually became mostly normal with the heart rate going into the 50's and 60s...still bradycardic. Other times she regains more consicious awareness and one tilt table test was positive which I assume meant the reason for calling this condition Neurocardiogenic or Vaso vagal sycope,,but she could never tolerate the Florinef and Midodrin therapy. So she had to D/C that combination and the syncopes persist with any exertion and exposure to heat, but year round these events have led to her total weakness and disablity with severe fatigue on any exertion or exposure to heat.  It's the worst thing I've seen in terms of a somewhat variable diagnosis situation. Upon one hospitalization she was found to have a PFO,,(Patent foramen ovale) that often is significant, and the TEE study showed an atrial rit to left shunt that was described as significant. So what is causing these disabling horrid events on a daily basis. Cardiologist disagreed on whether to do a pacemaker or not,,and are divided as to whether a pacemaker would do any good. One very competent cardiologist said no pacemaker would help as this was a more neurological problems, and she would continue to faint, just with a better heart beat. Subequent MRI was questionable as they found no significant septal defect, yet the records show the TEE cardiologists termed the PFO as very significant, and closure might be indicated. Referral to a young rude neurologist with a bad attitude, only got her rejected as having any significant problem and the PFO young surgeon was informed on this questionable assessment that the PFO was a "tiny" defect and common, in 20% of people walking around. So the surgeon denied any treatment based on this PFO despite the shunt described as very "significant" sure gave reason to find this as the cause of my wife's serious problems with no treatment recommended. I am disgusted with the local hospital who now calls her's a Psychiatric issue. None of this  fair, and we cannot travel to a major center to get to the bottom of this.  I've heard Dr. Blair Grubb of Toledo, Ohio is the expert in these kinds of difficult diagnostics. Any suggetions?

[JackieCalifornia]

No problem.  Best wishes!

[Remmel]

I sincerely apologize about this mishap. I thought I was on POTS as the dx and must have hit a wrong key or something that mistakenly posted my remarks under the Lyme sector. How that happened is beyond me. but thanks for your input.

[ree427]

I found the doctor I was talking about...His name is Dr. Thomas Bolte (boltemedical.com). Visit his website and see if he could be helpful to you. He requires an essay explaining the history of illness. Like I said, I do not know how good he is and I am not even sure if I am allowed to recommend anyone in this forum, but I thought there would be no harm if you decide to send him an essay. I stumbled across him years ago when I was searching for what is wrong with me. I understand the anxiety that goes along with not knowing what is wrong with you. Good luck to you.

[ree427]

I wish a had some ideas for you...It definitely sounds like a "mystery diagnosis".  There is a M.D. in New York City who specializes in mystery diagnoses. I do not recall his name right now and do not know how good he is. I will have to try and find it.  In this case, travel would be necessary to see him however depending on where you live. To my knowledge, it does not sound like the typical Lyme or co-infections, but anything is possible.  I am sorry someone labeled her a psychiatric patient. That is really sad and many Lyme patients can relate to how unfair it is to be given this label when doctors were unsure as to what was causing their symptoms. Keep trying and hopefully you will get to the bottom of it.

[JackieCalifornia]

I'm very sorry to hear about all you and your wife have been through.   I don't know anything about Dr Grubb, but looked him up on the internet and he may have a skill set that could help, or at least point you in the right direction.

This being a website about Lyme disease, do you have concern that your wife may have Lyme?  It can present in many ways that are difficult to diagnose, and it can affect the heart.  You might read at ilads [dot] org about heart-related manifestations of Lyme -- and if you search "cardiac lyme" online, you will find quite a bit of information.

Best wishes to you and your wife -- let us know what you find out.

[ewford]

What is the reason for posting in the Lyme section?  She ever test positive w/ Labcorp test, or was it a clinical diagnosis?  Was she prescribed any medications such as the 4 week ABX that is reccomended by the CDC?  Is she being seen by a LLMD?  IS Dr Grubb a specialist on Lyme diagnosing or aware of infectious Mycoplasmas and coinfections of Babesia, Bartonella, Brucella, Ehrlichia, etc?

  We are all aware of the manifestations of Lymes and it's affects on the CNS, heart, internal organs and vascular systems.  If you keep taking her to all these different doctors that "can't find anything wrong" or labeled her as a Pychiatric patient, there is a good indication it IS Lymes and coinfections.

  As far as the fatigue is concerned, research NT FACTOR which repairs cell membranes, lipids and mitochondria.  This will greatly help in the fatigue issue.  There is a great LLMD in Maryland, actually DC named Dr Jemsek.   This might be an instance where IV ABX might be a viable issue.

  http://www.jemsekspecialty.com/drjemsek.php