Hey, ive been having really awful heart troubles the last month and it seems to be getting worse every day. Any input and thoughts would be great as once again doctors have been of no help (Although they do seem to be taking lyme a lot more seriously at the hospitals)
Ok so I've been mostly free of lyme symptoms for 7yrs and than started feeling just put of it back in Jan.
Timeline of symptoms
Dec felt fatigued Jan dx with tachycardia - no sx besides infrequent mild heart pain Early March i started feeling symptoms- rapid heart rate (bpm went from 60 to 120) March- 2 heart attack like episodes. These episodes were extreme but nothing found by emts. Other than that no heart probs but a faster heart rate
April for the last month I've been in constant heart pain. Basically my heart races nonstop but now pounds as well. on top of that i have been having daily attacks that last for approx 2 hrs. During the attacks i can't breathe, face tingles, calves to feet extremely tingly and numb, slight numbness in head and arms, elbow jaw neck and back pain, fainting, extreme dizzyness where I'm unable to walk, heart pounding out of control doubling of heart rate, extreme stabbing chest pain. I swore off hospitals, but have been 3 times during the last 2 wks.
My constant symptoms are chest pain..every moment. .. in all different forms but it always hurts, extreme fatigue (been in bed for 3 weeks now) out of breathe, dizzy, fast heart beat, blurry/double vision elbow pain and 2 days ago I developed back, jaw, and shoulder pain that hasn't gone away.
I am prescribed klonopin but that does nothing to slow heart down.
I saw my doc who did ekg 2 weeks ago and found heart rate of 150 and arrythmias which concerned him enough to text a cardiologist. He came back and unassuringly said "he thinks it's benign" he told me he couldn't give me meds bc bp was too high
Since I've been to hosp 3 times
I've had echo and other blood tests and nothing was found. I have no insurance so they won't do more testing And i can't see a cardio. I even felt like they knew something was wrong but weren't telling me. I did not have an arrythmia attack during hosp stay so again no meds. Also had low bp one of the hosp stays.
i don't think tachy / arrythmias would cause all these symptoms. Especially constant chest pain.
any thoughts as i am really scared.
Ps even tho i said i havent had Lyme sx for years, the er doc said he was gonna run a lyme test and if my titers were high it could be from lyme.
Posted by lpkayak (Member # 5230) on :
i dont have experience with this but we have ppl who do sometimes its slow on weekends...hang on...someone will get to you
Posted by randibear (Member # 11290) on :
hmmmm have you even hurt your neck? cervical issues can cause alot of those symptoms.
Posted by bigstan (Member # 11699) on :
What type of arrhythmia do you have? Do you also have Pac's/pvc's? Were they caught on an ekg or did you wear an event monitor for 30 days?
I got all kinds of hear bs with arrhythmia caught on monitor, frequent pac's pvc's. Plus a tilt table diagnosed POTS syndrome.
Although you say symptom free I bet you never really cleared the infection. You probably need more treatment. can they put you on a beta blocker?
Posted by faithful777 (Member # 22872) on :
Why not see a cardiologist to get a ekg and echo done?
Posted by HK (Member # 45290) on :
i don't know, which is really bothering me. I have no idea which type arrythmia it is. My pcp was the only one who caught it, and he didn't Tell me, just called the cardio. Are drs able to diagnose the type by ekg? Well Im going in Monday to see him and will ask.
He had actually scheduled an appt for me to see a cardiologist Friday and would cover the payment (he feels bad for not diagnosing the lyme years back) but that feel through and now i gave to wait. I've been researching but I'm just not sure
Posted by HK (Member # 45290) on :
Yes I had both an echo and ekg performed in a hospital last week. If i wasn't without insurance i would have had further testing done.
Posted by HK (Member # 45290) on :
The arrythmia was caught on ekg an at my drs office When i came in complaining of rapid heart rate and dizzyness. I practically begged for a beta blocker but my primary said to wait for cardiologist appt bc my bp was too high.
I asked for something v at the hospital as well but they said my bp was too low ! Ughhh its a joke
No pvc dx yet but i have the symptoms
Randi - i have never in my life had neck or back pain.
Posted by Keebler (Member # 12673) on :
- If others might want to look over your recent background, this is of help.
[your psychiatrist] "prescribed me dextroamphetamine. And this was the first visit. . . ." & ". . . After a few tests he diagnosed me with lyme induced ADD . . . ." [end quote] ---------
Ginkgo and some other supplements also mentioned.
I suggest stopping Ginkgo. It can be too stimulating for some people. Sure was for me.
It's not clear if you are treating lyme or have a LLMD -- and that psychiatrist is NOT - NOT - lyme literate or he would have never prescribed a stimulant such as that dextroamphetamine.
Not sure if you are still taking that but, most certainly, dextroamphetamine can cause all kinds of irregular heart rhythm issues. And, it may be that for some time after stopping it, too (? not sure).
The high / low blood pressure fluctuations are very typical of lyme, actually. See detail in the Cardiac thread below.
Mostly, I'm concerned that you are getting treated by doctors who know nothing about lyme.
Do you have a lyme literate doctor? If so, they should be the one who suggests if or which specialists - specifically by name - that you would see.
CARDIAC INFO & SUPPORT -
Posted by HK (Member # 45290) on :
Also does anyone know if the cardiologist telling my dr it sounds benign might helo me figure out what it is ? Are all arrythmias deadly?
Posted by Keebler (Member # 12673) on :
- Looking back over your post above. Sorry to hear you have no insurance. Still . . . later, some other ways to manage.
You say: "Ps even tho i said i havent had Lyme sx for years, the er doc said he was gonna run a lyme test and if my titers were high it could be from lyme." (end quote)
A "lyme titer" test is an ELISA. Worthless. Usually.
And, if you don't have insurance, are you going to have to pay for a test that is both not accurate enough and likely going to seal your fate for any future help with lyme (by a potentially false negative test)? -
Posted by Keebler (Member # 12673) on :
- Even if you cannot afford a LLMD or if you cannot afford proper testing, do NOT let anyone run inferior tests for lyme. Just do not. Why?:
Public Health Alert (PHA) is a newspaper committed to researching and investigating Lyme Disease and other chronic illnesses
Laboratory Tests and Diagnosis for Lyme Disease and Co-infections - June 2013
- by Armin Schwarzbach, M.D., Ph.D. - Five Pages -
Posted by Keebler (Member # 12673) on :
- You ask: "Are all arrythmias deadly?"
No. All arrhythmias are not at all deadly. I'm not sure where that came from. I've had more skips that there are numbers in the universe and I'm still here. Fortunately, those days are long behind me, though.
Take those skips as a sign that there is very likely something you can do for yourself to settle down the heart rhythm.
Check ALL Rx and OTC & supplements you take as many can cause arrhythmia. If it mentions QT rhythm - also be very cautious. The Cardiac thread explains why.
Not taking anything stimulant in nature (even coffee) and taking a very good quality magnesium in DIVIDED doses, 3 x a day is a good move for the time being.
Contact your local lyme support group to see about any chance of finding a LLMD for better assessment. Those in the support group might also know about other doctors who could help along the way.
But, with no insurance, you may have to treat this like a study course in college and learn all you can to best take care of yourself - for now at least. -
Posted by HK (Member # 45290) on :
Yes Im aware the lyme test is useless, and the absolute last test i needed. I told him not to run the test, that it would provide no answers. He persisted anyway and at the time i was barely conscious and too tired to fight him :/
Posted by Keebler (Member # 12673) on :
Google: "diaphragmatic breathing" -- as this can help calm a racing heart and also help lessen adrenal surges. -
Posted by Keebler (Member # 12673) on :
- Sorry to hear you say:
" . . . Yes Im aware the lyme test is useless, and the absolute last test i needed. I told him not to run the test, that it would provide no answers. He persisted anyway and I was too out of it to fight him." (end quote)
Sadly, you either got strong armed to prove you do not have lyme or the ER doctor may not have been well enough educated to understand the ELISA was not a good move.
Either way, be sure to get a hard paper copy of that test in your possession.
Good luck. This can get better -- be sure to take really good care of yourself now. Nourish and Nurture. -
Posted by HK (Member # 45290) on :
Thanks for the advice. i can afford lyme treatment, and like i mentioned, i saw the dov back in January when the sx started. I feel lost as to whether I want to be on antibiotics or not. I feel toxic when on them.
I'm also seeing a psychiatrist for mental support as well as my reg pcp. Paying for a cardiologist out of pocket too, wouldn't be possible now.
My lab results showed low rbc (as usual) and borderline low potassium and was given a shot of it. I think my magnesium levels were fine.
Well, i see my dr Monday so hopefully I'll get some answers and medication. He said that he would still be helping w the cardio bill, so that's what I'm counting on now.
Posted by Keebler (Member # 12673) on :
- First,
It seems that assessment by a LLMD is necessary. These other doctors cannot help if lyme is the cause.
Low RBC is one sign of BABESIA, another tick borne infection.
A shot of potassium? Hmm. Depending upon the dose, that could have a heart go pitty-pat. But, someone should be figuring out why low in that and how you can best get it with vegetables & other real foods.
As for magnesium and blood tests, the tests are not all that clear. Be sure to read the links that explain why that is. If your heart is racing, magnesium could be a real hero. The links explain detail.
You say you "feel toxic" when on antibiotics. This is key:
while the thread was started by someone else, HK describes important details on 3 Feb. 2015 -
Posted by Keebler (Member # 12673) on :
- I know this is all a lot to take in at once. Keep this as a reference page, so you can come back to it - and take rests, too.
You mention seeing a Dr. H 6 years ago. Not sure if the same one here or not . . . still, seems logical to check in with that same doctor you saw before - just in case they can shed some light.
Were you assessed for BABESIA then?
Posted by Keebler (Member # 12673) on :
- I know this is all a lot to take in at once. Keep this as a reference page, so you can come back to it - and take rests, too.
You mention seeing a Dr. H 6 years ago. Not sure if the same one here or not . . . still, seems logical to check in with that same doctor you saw before - just in case they can shed some light.
Why Can't I Get Better?: Solving the Mystery of Lyme and Chronic Disease
- by a leading ILADS LLMD - released Nov. 2013 -
Posted by Keebler (Member # 12673) on :
- Do you have some organic garlic in the house? If so, with some food in your stomach, you might take a small clove and chomp it ever so slightly between your teeth and swallow it down.
Stay upright for a little while (at least keep your torso upright) and maybe eat just a little more food so that your stomach has more to work on than just the garlic.
Garlic can have some very nice properties that help the heart (but it can burn, so the precautions mentioned are for a reason). And it can be a little stimulating, so that's why I suggest a SMALL clove -- and not too much later than it is now your time.
[With apologies for a terrible job they do with visual layout of this] For a start:
No. All arrhythmias are not at all deadly. I'm not sure where that came from. I've had more skips that there are numbers in the universe and I'm still here. Fortunately, those days are long behind me, though.
I was going to say that. i believe that 25mg daily of Metoprolol Succ would benefit you greatly. Its a very small dose of beta blocker. You should talk to your doctor about a beta blocker. It has helped me tremendously.
Posted by HK (Member # 45290) on :
Thanks for the feedback♡ I would have been back sooner but i can barely function right note, let alone write. It's to the point where i just zone out for minutes, cant remember a thought from a second before. also i didn't sleep laSt night so that doesn't help.
well no no more hospital visits as of now. I've had 2 more attacks but basically just laid a in fetal position wairing to die. I'm not sure what exactly is happening w my heart but it sure feels like i am. Very different from my earlier panic attacks Which were quickly calmed w a benzo.
I have not been to my pcp yet as I am just too weak, but after a lot of research i think what I have ate pvcs. i think its one of the nm more serious ones, but info is limited So not sure. POTS is possible as I've am always sloucheed and hr does increase when standing
I am trying to do something about insurance now So i can get help. I have a few ideas of what's making me ill, but ideas are powerless when u have no help so I try not to think about it. I'm in no way a hypochondriac. If i ever felt strange symptoms after being 'cured' of lyme i brushed them off, and went on.
After coming down w a virus a year ago this month, everything started going downhill.
Last April caught a virus, but after it passed i was still Ok (85% as usual) besides some extra added confusion and fatigue. but every month sx became a lil worse and unusual new sx appeared such as stabbing pains, my arm going completely numb for about an hour and ...things i can't think of now lol oh dx w astigmatism (but i had no noticeable symptoms of it yet)
Dec i Became pregnant but only lasted for 2 months ..developed minor off n on nausea from that point forward (never had nausea before)
2 mo after pregnancy i had huge blood clots passing for 4 days (NOT normal from what I've experieneed and read n listened to from an rn)
Strange sensations for a month
Then fatigue reaaally kicked in high gear, and i suffered a worsening of neurological symptoms...... and frequent joint pain And tingling. now i have all the sx listed above. I've had lot of random intermittent weird stuff but now its pretty constant. with my heart being just as tired as the rest of me i just dont know. The chest pain, wrist pain, one knee and elbows are painful also. tingling in ankles/feet and of course fatigue and paralyzed feeling in my brain. Double blurry vision, dead stare state of mind.
I'm thinking it's an artery blockage issue. idk?
Mystsais gravis (i had the eye droo twice it's off and on)
Kidney inflammation/diseas
Thyroid disease
Ms (doubtful, but i just can't believe i have arthritic symptoms after all these years) everyday it seems to more painful
This is all very shocking and saddening because I have been well for the last 5 years and when on my a pain medicine which I took for 3 years 110% Now I'm back at 10% feeling worse than ever.
Also i went to my dr a week prior to becoming severely Ill and asked for a thyroid test. when i came back the following week freaking out w ♡ complications, he did the ekg and i heard him tell his asst to "run the thyroid test" So what...he threw my blood sample out and was just gonna lie and tell me everything was fine?
bad choices I've made that could contribute to all this.
Took barbiturates and benzos for a long time continually putting my body through abuse and withdrawal. But they helped me to live like a 24yo so even now i have few regrets
Drank often
Accidentally overdosed on tyl pm (100 pills in 4 days) this was recent.
[ 05-01-2015, 05:58 PM: Message edited by: HK ]
Posted by improver (Member # 8380) on :
I was just reading this thread and something really stood out to me, you getting worse after a virus.
I haven't posted in a very long time. I kind of gave up for a while and tried to live my life around lyme with limited treatment and supplements.
While I did have some improvements, these past couple of weeks have been a reminder to me that I must get more serious about healing.
I have had bouts of heart palpitations and chest pain in the past and have had many tests over the years which have always come back normal.
The symptoms while bothersome and scary were not as bad as what I have been dealing with lately.
Almost two weeks ago I started feeling sick and wound up with what I think was a virus. My heart palpitations became much more frequent and quite scary.
I got a holter monitor from my cardiologist and it showed many pvcs and a few "short runs of Svt". The next couple of days after the holter I felt like the symptoms were getting worse. I was very fatigued and felt completely worn out. I have been back to cardiologist and primary Dr.
They are running labs and have told me that even though I'm feeling palpitations so frequently, (sometimes every other or third beat with some extra beats, sometimes thousands per day) that they feel it is benign.
I have been barely functioning for two weeks, it's really scary. I have made an appointment with llmd but it's two weeks away.
The reason for mentioning all this is that I am wondering if maybe getting a virus has pulled our immune systems down enough to let whatever remaining microbial infections get a leg up and try to take over again.
Granted, I wasn't at 85% like you were but I wasn't this bad and knew what to expect for the most part. Now I am reminded how much we need to fight for healing.
I really hope you get answers. Hang in there.
Hello to all the veteran lymies, it has been a while Posted by HK (Member # 45290) on :
Hello! Sorry to welcome you back, but it does seem like we're on a somewhat similar path so ill try to keep in touch w my recovery. Fingers crossed
Yes it was herpes (cold sore) virus that put me down o think Since that's when I started going downhill. Perhaps if i started abx and vitamins instead of numbing the pains w pain killers, adrenaline , and benzos i wouldnt have gotten to this point. but i can only move forward now.
I have my llmd appt Monday. I'm wondering if i should ask him for any specific tests as he normally offers no input/advice.
I will also say that stress has probably played a huge role as well. I have a 5 yr old (who my mother and his father's fam has been taking care of lately :/), friends who either beg, guilt trip, or become frustrated and angry that I often disappear. I'm sure they don't fully understand the complexities of this disease, as i don't even understand. So I'm just as angry, disappointed and frustrated as them.
i also suffered a very traumatic heartbreak which actually set off my ♡ sx. Ive had heart issues since January but only tachycardia and angina pain. After the separation, 2 days after to be exact, is when my chest pain began and has been there since.
I would have laughed off the idea of a soul mate before I met him, and for being a person who is mostly numb to the emotion of love, I loved him deeply after the first date. I'll spare the details, but it was a nightmare.
Funny that the metaphor really turn into a reality. An emotional heartbreak literally caused a physical heartbreak. The ventricular arrythmia was diagnosed 2 wks later and I've had the heart like attacks, breathing complications, tingling, and all other heart sx mentioned earlier since.
I am waiting to see a cardiologist to get on medication for the pvcs, and more tests run, but w no insurance i have to wait. This really is frustrating bc i keep having awful attacks, pounding heartbeat, chest pain, and w the eye sx i know im due for something huge.
Ill keep everyone updated. Thanks for responding w your advice and stories.
Posted by HK (Member # 45290) on :
Keebler - i am no longer taking dextro but i did look into the research of the famous lyme literate psychiatrist (forget his name, Joseph i believe) and he prescribes this medication to his patients so that kind of made me feel better about it. I also had brought 2 articles to my psychiatrist written by llmds who also Daud it was a good drug to use in certain cases (ritilan and Paxil being the number one choice) as it turned out it wasn't good for me, but it is prescribed to lyme patientsby the best lyme psychiatrists
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by HK: This really is frustrating bc i keep having awful attacks, pounding heartbeat, chest pain, and w the eye sx i know im due for something huge.
- I don't understand why you can't be taken care of at the ER? They will help anyone... pay or no pay.
??
Hi, improver!
Posted by HK (Member # 45290) on :
I take klonopin so they looked at me like a drug addict maybe (the entire staff was very rude and unprofessional to be honest, there's a great hospital 20 mins away but the emts wouldn't drive that far) and the last time i was there my bp dropped which is why i had went. My hr had been a stable 150 for a week and then suddenly dropped and i felt by body slowly giving out and practically blacked out after an hour of laying on the floor praying for the dizzy, faint, numbness etc to go away. It was a very strange feeling, long story short my hr went back up when leaving the hospital in the morning and the dr who i saw for 20 secs said my bp was too low to give me anything.
Of course a few hours later it rose back up to 130
Posted by improver (Member # 8380) on :
Hi Lymetoo!
HK, I'm very sorry to hear about the other issues that you are dealing with. As you probably know, life stresses can really wear us down physically.
I find that I often feel much worse if I'm dealing with a very stressful situation. It can be a vicious cycle. Stress can cause anxiety, which makes symptoms worse by overtaxing our bodies, which can cause more anxiety, which can cause more symptoms etc etc etc.
I know it's like that for me anyway. Especially when my heart symptoms are flaring up because it is just scary.
I am not saying that your issues are stemming from anxiety, I don't know that. I'm just saying that stress and the like are not good for healing, or staying well.
I am not sure which Dr you see but I only know of a few in NJ and I think the ones I know of are pretty good.
I hope you start feeling better soon.
Posted by HK (Member # 45290) on :
So llmd prescribed Zithromax. Does this sound like a good drug for my symptoms
Ps i did tell him everything including heart issues.
Posted by Lymetoo (Member # 743) on :
It can affect your heart .. be on the lookout.
Posted by HK (Member # 45290) on :
Thx lymetoo will do
Posted by LisaK (Member # 41384) on :
I have some heart stuff and I just had some genetic testing done via 23andme and took it to an expert that told me I have genetics that tend to lean towards heart issues. so, I am working to make that area of my genetics better through supplements.
I hope you find answers
Posted by mlg (Member # 35383) on :
Sorry I have not read all of the thread I had some heart palpitations and elevated heartbeat. I also had thyroid problems. I worked with 3 different LLMD'S. Even my regular pcp gave me a beta blocker. You should take something like that, I am not a doctor just talking from experience, Also motherwort herb or extract, lemongrass tea, calms, make sure you are getting enough sleep.
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