|
Ive seen a few posts about sx that may be cardiac but has anyone looked into "dysautonomia"??Many with lyme develop this! My sx started with having odd cardiac sx while pregnant, continuing until finally being dx with Lyme when the baby was 6 mo old. With all the crazy heart sx I thought for years it WAS my heart and even had some cardiologists say I needed ablation (electrical killing of heart cells permanently destroying the nervous system connection/communication).I had fast and slow heart beats, skips and palpitations, feeling like my heart stopped for a few seconds. And once a monitor picked it up ( the long pause) they stopped telling me it was impossible and in my head!! I also feel/felt as if I was almost blacking out. Had I done ablation I may have been worse and that is a non reversible procedure!! Dysautonomia is diagnosed by tilt table test and orthostatic monitoring. Despite this, I went over a decade misdiagnosed as many Drs didnt know much about this. Today, still. many health professionals arent fully informed--2-3 yrs ago I had a local cardiologist tell me my TTT (tilt table test) was negative just because I didnt faint ( totally WRONG) and all I needed was to eat more green veggies!! If you want more info let me know and Ill post about these tests, and how they too can be misread or misinterpreted. you can see if your sx fit by reading more at this site : www.ndrf.org since most of us Lymies with dysauto have type called orthostatic intolerance [esp. POTS], here is a direct link to those sx http://ndrf.org/orthostat.htm There are only a handful of qualified experienced expert Drs. in the U.S. including at Mayo, Vanderbilt and MCO toledo. Several others are also trying to get up to speed but theyre harder to find than LLMDs. Every year Evan and I are piled into a car for a 10 hr drive from NJ to Ohio --we have to travel flat and often the trip provokes severe illness of erratic heart rates and BPs along with uncontrollable vomiting once the pulse goes above 130, and we hope we dont again end up in ERs along the way!! This year we go Mothers Day weekend!! we stay overnite, see the Drs at MCO then leave for home and return late the second night. We have had to become very experienced with dysautonomia and new stuff comes up about it almost every month and yet we are still in the dark for helping most. Unfortunately my son has it too. His is mostly POTS with some OI and mine is reversed--mostly OI with some POTS and I also have general non classifiable stuff as well.( mine was probably due to genetics of having a connective tissue disorder--EDS/JHS and therefore strecthy blood vessels,[ blood pools and BP/heart affected]--PLUS the Lyme PLUS genetics for nervous system chemical mix ups-- any one placed me at higher risk--all of them was a done deal) The overlapping sx makes it hard to classify dysautonomia types. There are some tx for most types of dysauto, but for Evan and I -all we tried either makes it worse or doesnt help so for now we live with it. What I will say is that for me and many others when the Lyme sx improve, the dysauto does too!! Dysauatonomia --no matter if triggered by Lyme or something else--is as debilitating as heart failure and affects lives in a similarly serious way. Anyone who has/has had an infection (Lyme etc) and has unusual heart sx should be ruling out this condition with particular tests read by specialists.A clue for Lymies is that if you try Beta blockers theyll have the reverse or worse effect--raising either pulse or BP or both when in normal people it lowers both. Another is that almost passing out feeling sometimes followed by adrenaline rush and/or shakes, trembles etc. If you need more info Ill be glad to help Finette Post edited by: fin24, at: 03/24/2008 16:52 |
