seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I really need to get some help and fast on this. I re-started my Malarone/Plaquenil at lower doses last night.
I had a real scare at a neuro's office today. There is either something seriously wrong mentally with me or a crazy physical response. I wasn't feeling terrible when leaving home, but not great (like I even know what that is).
It is absolutely illogical what happens to me often. I get in the car and start driving. I had a 10 mile one way drive which is a LOT for me nowadays.
About 4 miles into it, I start yawning terribly. I'm yawning over and over and over again, but no matter how hard I yawn or deep, I never catch a full breath. It gets hard to breathe like this for miles. It's not physical exhaustion for goodness sake. I'm only behind a driver's wheel.
Well I make it to the doc's office trying my best to survive this ride. I get in there and they take my blood pressure. I'm a big guy and they only had a small cuff. They take it manually on my forearm and then take it electronically in the same place.
The Nurse looks at me and asks if I have bad blood pressure issues. I could tell by her face, something wasn't good. It was 140/120 manually. OMG. They said it's stroke level if it keeps up all the time.
They take it with the machine and it goes higher and higher on the diastolic side - up to 133 at highest. I'm absolutely freaking out by this point.
I lay down in the office for a while. I hope to goodness that was a bad reading or the cuff size issue made it high.
I desperately need real help before I die from this. The neuro was very serious and referred me to someone she said is very, very good at controlling this stuff.
I get home and stand up and take it and it's 170/100. 10 min later, I take it again sitting and it's 138/87.
I don't even know what's happening. I just want to be around for my family. I don't anticipate I will be if these numbers are true. I need to make some changes.
Basically any activity skyrockets it, but that doesn't explain the driving scenario. Maybe I have horrible anxiety I can't control and am not addressing it properly??
[ 02-19-2011, 04:14 PM: Message edited by: seekhelp ]
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
I don't know seek... I don't think this is all mental.
So they didn't even HAVE a larger cuff?? That's weird on their part! It DOES make a big difference... but .. you checked it later and it's still TOO HIGH.
138/87 would be good news.. but the others.. no.
Please make an appointment with the doctor the neuro suggested.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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seekhelp
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posted
Yeah,it's pretty ridiculous not to own a large cuff if you're a physician's office! If you can't afford that expense, you've got issues.
I will make the appt tomorrow. I too think there's more going on than mental, but can't prove it.
My gut feel is I'm in a bad spot and need IV Abx to get ahead. I'll never get it so.....
Perhaps Bartonella of a different strain??
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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sammy
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posted
Someone needs to manually (look and listen) check your blood pressure with the appropriate size cuff. It the cuff doesn't fit where it should then you are not going to get an accurate reading. I also don't trust the cheapo electronic BP readers. They are often not accurate when compared to manual readings.
You should go ahead and schedule an appt with the new cardiologist to get a second opinion. I remember you've been having a hard time finding a doctor to take your blood pressure concerns seriously. Maybe this doctor will be able to help you better.
Posts: 5237 | From here | Registered: Nov 2007
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seekhelp
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posted
Yeah I guess it's pretty important Lymetoo:
I want to learn how to manually take blood pressure Sammy. Is it difficult to do on your own?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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steve1906
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posted
Hey seekhelp. you really need to get a handel on this.
The 1st. thing you need to do without question is find someone that can take your blood pressure right; as you know, It could mean life or death.
Find another doctor!
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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posted
by the way, LDN for some reason lowers blood pressure.
On the thyroid forums we noticed that after people got on the correct dose of thyorid hormones, the blood pressure went normal.
Posts: 366 | From Europe | Registered: Nov 2008
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posted
The anxiety you take with you to the doctor's office does not help. However when I first came down with Lyme and co. I was in incredible in retrospect condition. And when I went to the doctor BP was up around 140. I picked up an electronic monitor for the wrist and kept track. Even when I was at home it was higher than a few months before when I had an exam for life insurance coverage.
Benicar helped also helped. I am not back to normal becasue I am not in good shape but the BP is much lower.
It is hard not to freak, when you feel like your world is in free-fall. I understand that feeling well. I have been one who meditates, but I focused on and repeated a phrase inside when I have been in a bad place with the sickness.
And it has help. I have watched the BP and the pulse drop. You could give it a shot.
-------------------- enjoy the day.
-jmb Posts: 208 | From Maryland | Registered: Dec 2008
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Keep in mind that everyone is different, BUT lyme and co-infections affect blood pressure. My symptoms included high blood pressure which I had never had before. I was not overweight either.
I searched for (the internet) and found many stories about people with lyme who had problems with blood pressure. Some are case studies written by doctors.
My blood pressure spiked twice while on blood pressure meds. One time I was given IV magnesium at the ER. A naturopath prescribed a magnesium supplement to take when my BP went up.
Then I went through a period where I had a rapid heart rate. It happened at home and doctor's offices. All I can tell you is that doctors tried to tell me that it was anxiety. I told them it was coming from my body and my body was reacting to something.
I'm not on any blood pressure med. now and it only increases once in awhile which is when I believe I am herxing. A cardiologist told me I didn't have a BP problem or a heart problem. He wouldn't talk about lyme, but I know that is what it was/is.
It has taken 9 months for my BP to return to normal probably 90% of the time. I've been on oral antiobiotics for about 3 mos.(of the 9)People will tell you to do deep breathing and meditation, etc. Those help, but without treating the bacteria, you won't get very far.
Posts: 93 | From arizona | Registered: Oct 2010
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posted
Just a long shot but I would get a , (Tilt table test) Cardiology.
Posts: 789 | From CT, | Registered: Jun 2006
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seekhelp
Frequent Contributor (5K+ posts)
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posted
Al, I tried to get that test for years. No one will run it.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
If you are a big guy, you need a large size cuff. I have taken well over 10,000+ blood pressures in my career, with patients laying, standing, and running on treadmills. The numbers are grossly inaccurate without a properly fitting cuff.
And make sure to have it taken manually by someone who actually knows what they are doing. I've never trusted those mechanical blood pressures.
We tried one on myself at work and my bp registered 220/115. It is actually around 90/60. That is how wrong they can be.
Posts: 151 | From SW US | Registered: Feb 2009
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posted
Yeah, pretty much what everybody is saying.
My mom is a nurse and has an electronic machine that she had to have a certain job: it is ridiculasly inaccurate! I would check my BP 3 times in a row and get drastically different numbers.
It is really easy to learn to take your own pressure but I don't think it is always the MOST accurate.
And a properly fitted cuff is crucial!
I hope that you can get it figured out. I know how scary stuff is when it starts to effect your heart...not fun!
Posts: 265 | From Oregon | Registered: Aug 2009
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merrygirl
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posted
Too small of a cuff will make your bp seem high. It it obvious!
Posts: 3905 | From USA | Registered: May 2007
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Maybe the key is to buy a good quality electronic one. They even have one at cardiac rehab that I use sometimes. It's very accurate. I know because I will be checked again before I leave and it's always within range.
It is also within range with the one I have at home. My BP is fairly consistent.
seek...When is your appointment??
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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djf2005
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Member # 11449
posted
get benzos for these types of situations to use as needed
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
seekhelp
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Member # 15067
posted
I have tried EVERYTHING to get a benzo script for emergencies Derek. Not one doc out of 40 would give one to me. Many tried to shove anti-depressants my way, but they are scared of these drugs. I want fast acting. I have anything but an abusive attitude towards drugs. I'm the exact opposite.
Lymetoo, my appt is Monday. It's an Internal Med doctor who specializes in BP control.
My Mom is in her mid 50s and has recently been diagnosed with an off heart valve issue that will make her need open heart surgery at some point in the future. She feels weak often like I do. It was not caught on an echocardiogram or EKG or stress test. Someone 'accidentally' caught it and looked for it.
I keep hoping I don't have something like this with my extreme exercise intolerance. I'm trying to get more info from her. I do have a mildly enlarged left ventricle as found on multiple echos, but no cardiologists care.
I just can't figure it all out. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
Seek.. Do you know how they found your mom's issue??
Very good that you will see and Internal Med dr specializing in BP!! yea
You're not on any anti-deps?? Go for it man! You will likely not have many issues with anxiety then. Why suffer?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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seekhelp
Frequent Contributor (5K+ posts)
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posted
OK. I've got an update for you. You want to know how TBI patients get treated?
I went to the Internal Medicine doctor the neuro referred me to this week. I brought a chart of my last 25 days of blood pressure readings, all my lab results neatly laid out in a table format and explained things to him.
I was basically cut off every sentence I tried to speak. My blood pressure reading at the office was 145/92 or something. On the table I presented, readings hit a max of 170/100 and on average maybe 145-150/mid 90s.
What does he say? He says all is great and no issues! He suggests I double up on my Lisinopril. He says he's going to review my records and to come back in a month. He did a full phsyical.
Well, fast forward to today. 5 days later I get a letter in the mail saying he feels my current medication protocol is just fine and I should continue with my PCP - DUH I don't have a good one and my existing one gives two craps about my blood pressure/health! Furthermore, the note says on the bottom he does not want to see me again and is not interested in participating in my future care!
This came from a doctor I was REFERRED to by my neuro who is said to be a very smart physician who would help me.
Something seem very wrong here perhaps? I truly am left for dead and there's not a damn thing I can do about it. I'm just tired of it. It's not right.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
I would ask for benzos and beta blockers as needed for this.
Also if you are on a drug that can seriously impact the CNS (Cipro, Levaquin, Factive) I wouldn't ask your doctor and discontinue it immediately (learn from my mistakes).
Other antibiotics can have these side effects too. The antimalarial Larium can have long term consequences as well. Flagyl (and others in that class) can be neurotoxic as well.
It could be infection as well, but never assume it's not a side effect of a medication (especially if it was recently added).
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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feelfit
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posted
That was a very nice way of him telling you "it's all in your head, and you worry too much".
I don't know if you mentioned your potential TBI's or not. Often going in with flow charts etc. makes one appear to be 'fixated' on an issue. Especially doctors with big ego's.
They do not understand what it is like to live with all of our symptoms 24/7. Apparently this doctor feels that you are creating your B/P issues. You should have dumped him....though he didn't give you a chance.
Can't believe that you can't get any anti-anxiety meds. Maybe you need to schedule with a psych, who understands chronic illness and the situations that it can create (depression, anxiety, PTSD). In fact, that may be your best bet. You need someone on your team who is willing to listen to you, and report, in writing that this is not 'all in your head'.
posted
So does he know about your having Lyme disease, or not?
stupid dr
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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seekhelp
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posted
I didn't mention Lyme hardly at all and actually said I had no idea if I had it. He asked me if any doctor said I had it, but it was meant in a condescending way towards these types of docs.
I did mention the Babesia WA-1 because well, it's a positive titer from a standard lab (LabCorp). To hit a 1:2,048 titer, I either have it now or did at some point. That seems tough to dispute!
I told him I see an ID doc and he did know him. He had nothing bad to say to my face about him. Then again, he didn't say anything good either.
Feelfit, I agree completely. He didn't have the guts to say what he thought at the appt and this was the easy way out. Hell, why look at test results when you can just come to that conclusion, right? Easier.
He did do one gracious thing. He's not charging me or the insurance for the 1 hr consult. lol.
Kday, I'm not on any of those drugs. Just on Malarone and thyroid meds. No Larium, no Flagyl.
I agree Feelfit that a psychiatrist would be my only hope IF they buy my story. I don't have the $$$$ to hunt down LL psychiatrists so they'll nod happily and agree. This Internist was actually going to Rx Xanax, but after reviewing my records he obviously decided I'm not worth anything.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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beths
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posted
With POTS, your diastolic pressure goes up with standing. Find a good cardiologist to diagnose you
Posts: 1276 | From maryland | Registered: Jan 2009
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kidsgotlyme
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posted
It seems to me that you should have some kind of recourse against these doctors. You have a right to be treated, right??
My primary doctor KNOWS that I have anxiety. She has never had any problems with prescribing me Klonopin.
I just don't understand this? Are there not ANY qualified physicians where you live Seek?
I don't know what state you live in, but I'd like to know so I will never go there. This is criminal!!
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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posted
I'd recommend a good cardiologist -- if for nothing else, just proper testing.
Besides an echo, you can get a holter test and possibly a cardiac MRI, if they see anything peculiar on the echo.
And have you ever tried beta blockers and see how you do? And how is your pulse, normally?
I've had similar reactions, but not related to my BP, but pulse. If I feel extra sickly, trouble breathing, etc. my pulse may reach 95-100 resting (normally it's 75-85ish). Just curious if it's your BP only, or pulse too.
I find that fish oil, magnesium and pomegranate lowers my BP some (not that I need it lower, as I take heart meds)... but if you haven't tried them, it's something to consider.
Posts: 584 | From NY | Registered: Feb 2009
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Rumigirl
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posted
You need to see a LL cardiologist. I know of 2 in the NY area. PM me if you want their info.
There also is a LL psychiatrist (very well known and respected) in the area, too. BUT you should see a cardio first. If there aren't any LL cardio's in your area, try to get a recommendation of at least a Lyme friendly cardio. But LL makes a BIG difference.
And, yes, beta blockers would help. (I"m not a dr, of course, but do know a lot about it all).
Posts: 3771 | From around | Registered: Mar 2008
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posted
Can you just go to a regular primary care doctor as a new patient and not even talk about everything else going on? Maybe let them take your blood pressure and discover for themselves that it is high? If they talk about Lyme, say "We don't have Lyme in whatever state" or "but I've never had a tick bite".
Sometimes, I act like we have been to "those Lyme doctors" and seen the error of our ways. Now, we are returning to the people that can really help us. If you don't feel you can keep Lyme out of it, maybe try that approach. Then get your LLMD's approval for any meds they prescribe.
Another idea is to go to an integrative doctor with an MD or DO that can write prescriptions but also uses alternatives. I have been to three of those doctors, unrelated to Lyme, and I found that they were accepting of Lyme. They all believed in it, even if they didn't treat it the way I wanted to be treated. They might be more likely to be willing to help. A lot of them don't take insurance, though.
We didn't have good luck with a cardiologist for our daughter. His PA saw us, said she had POTS and there wasn't much to do for her, and said the doctor would be right in. Then, she came back and said the doctor had an important lunch meeting that he couldn't miss! We had been waiting for 1 1/2 hours, so if that was really the case, they could have told us earlier. We think he saw Lyme in her chart and didn't want to be involved.
Posts: 984 | From US | Registered: Dec 2007
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seekhelp
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posted
Kidsgotlyme, I live in Michigan. I don't suggest moving here if you have TBIs. We're treated horribly, but not as bad as Oregon if Keebler's accurate. That sounds totally criminal. The disease does not exist here in 99.9% of doc's opinion period.
I am aware of no Lyme-literate cardiologists, but I'm going to ask around. If any MI members here know, please PM me! Going to NY for another doc is out of the question financially and timewise.
Lemon-Lyme, my pulse is very similar to yours. Usually 75-85 and rarely if ever jumps over 95. My heart can 'feel' like it's pounding, but the monitor is not verifying it. My systolic BP number is what gets highest...can jump quickly to 160-170. Diastolic usually is mid 90s, sometimes a bit higher, sometimes lower.
I have never tried Beta Blockers, but I'm considering. With my symptom pattern/numbers, do you feel they'd be beneficial?
My blood pressure is the thing impacted by the level of illness I'm feeling, NOT my pulse. I never understood this.
Even when I feel anxious, my pulse doesn't confirm it. The whole scenario is very unexplainable and odd.
I took some D-Ribose this morning (5 mg). I feel absolutely horrendous. Eyes/nose pouring liquid, air hunger, bad fatigue, chills, etc. I obviously don't react like normal people do. Something is very wrong with me.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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If you were in NY, I could recommend someone too (who I see). You may want to just look for the best heart hospital in your area and look for reviews on decent cardiologists who work there.
As for beta blockers, they typically are recommended if you have a high pulse + high BP. Best for a cardiologist to determine if it's worth it for you. I should mention that beta blockers also tend to have more side effects as compared to ACE/ARBs, and a certain amount fatigue isn't unusual (not like we need more fatigue as it is).
One thing I find really weird is the reaction by your BP doctor. Not the dismissing symptoms/tick-borne illness part, but dismissing your high BP. If the average BP from your log is 140+/90, that isn't normal. No cardio in their right mind would say that's fine. Not that I want to worry you, as it's not insanely high, but it's not something you want to remain at for the rest of your life.
A couple of doctor related things I have noticed (as I see a couple of docs). Downplay the Lyme/tick-borne illness angle, and let the doctor come to a diagnosis on their own. No harm mentioning that you 'had' Lyme, or were positive for several tick-borne illness in your history, but a doctor doesn't want to be told a diagnosis. And if seeing a cardio, let him/her check for all causes of your BP issue... heart, kidney, etc. If they can't find any reason, then possibly bring up the tick illness angle a bit stronger. The cardio I see is very open-minded, for instance, but she isn't Lyme literate. But since I have an idiopathic heart disease, she's open to tick related diseases possibly playing a factor/being a cause. However, I never went in with the agenda of it definitely being the cause.
Oh, and one thing you can try, to see if stress/anxiety is a factor BP-wise. Next time you feel super anxious w high BP, maybe take a benadryl or something (they put me to sleep). If your BP remains high, yet you feel sleepy and calm, then anxiety can be ruled out.
Posts: 584 | From NY | Registered: Feb 2009
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seekhelp
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posted
Lemon-Lyme, I too agree his response is bewildering. I think it's just hatred of the unknown and TBI involvement. I'm taboo mentioning I ever had something called Babesia that he never heard of.
It's hard to downplay things when they ask what meds you're on and you disclose Malarone (anti-malarial), right?
Benedryl doesn't put a dent in my issues. Like water.
I certainly don't need the fatigue of a beta-blocker, but at the same time don't want to die from uncontrolled hypertension.
Something is certainly very wrong. Tonight we had a decent size snowfall. I go outside and try to snowblow for 5 min. Some days I can do it. Today I feel faint quickly and stopped because my body was telling me something is wrong. I felt like I may not be able to stand up if I pushed more. I get indoors and my blood pressure is 180/99. My heart feels like it's thudding kind of, but not pounding. Pulse is only 98 with exertion and I'm very, very overweight. I am unable to do any physical activity to help myself shed weight due to my severe exercise intolerance and bad payback effects. This is a horrible situation.
If you were pushing yourself beyond physical limits, wouldn't your pulse be way higher? I used to be a big exerciser and got my pulse to 160+ intentionally working out. Now I can't go higher than 110 w/o gassing out.
I don't like the heart thud feeling at all. i can't describe it well unfortunately. Can anyone relate to that?
I'll do some research about cardiologists, but it's tough w/o knowing someone who has had success. Again, if anyone in Michigan knows a quality one who is LL-sympathetic, please PM me.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
Some people don't have an issue with a high heart rate.. maybe you're just one of them.
I like the idea of just going to a new dr and let them take your BP. Take the chart along just in case.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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seekhelp
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posted
I agree Lymetoo. The only problem is if your BP skyrockets when you exercise / move and your sole reading done at the doc's office is after sitting in a room for 30 min, it's not representative of your true situation, right?
The chart is important. I'm no heart expert, but isn't the main problem for patients with heart failure/damage an inability to exercise w/o weakness and bad response? I did pass the thallium stress test 9 months ago, but I have been completely unable to ever finish a stress test on a treadmill or bike anymore. I've failed for years. It blows my mind how the chemical-induced stress test shows no issues under those situations. I'm relatively young - mid 30s. Don't feel like it anymore. My wife says I'm starting to show some gray hair. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
If it were me, I would not disclose the Malarone and then ask my LLMD about any meds they prescribed.
I would move around in the waiting room, too, as much as I could without looking "anxious". Go to the bathroom, get a drink, find a magazine, find another magazine, etc.
Then, tell the doctor that your problem is when you are moving around, if your reading is ok when it is taken.
I can't help but think if the Lyme distraction is out of the way, they will be more responsive.
What have they said when you fail the treadmill or bike stress test?
Posts: 984 | From US | Registered: Dec 2007
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posted
You're taking your BP randomly during the day, right?? Your average is too high.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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seekhelp
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Member # 15067
posted
I take my meds before I go to bed Lymetoo (11 PM). Both of them - Lisinopril and Hydrochlorothiazide (HCTZ).
I agree. I don't like my average at all either. Life isn't about today. It's about long-term damage as well.
JKMom, they stopped doing the manual stress tests as I told them there's no way I can handle it. I can't. Last year I tried a pulmonary exercise stress test - BIG FAILURE. 3 min into it my BP skyrocketed, I got weak, they stopped the test. They said my BP was going up too fast and they would have had to stop the test soon anyways at a point. No more research was done. No concerns whatsoever as to why I had that reaction. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
Hmm... really odd that none of your doctors, or whoever ordered the stress tests, didn't follow-up on the BP issue.
Based on what you posted, I first thought perhaps whitecoat syndrome (which I get sometimes) could play a part... but your symptoms don't match. As an example, for my stress test I had years ago, my BP was actually higher before I started (due to nervousness) than while doing the actual stress test. After I took my mind off of things, my BP went to normal.
Again, go for the cardiologist, and get a full workup. No decent cardiologist will dismiss a high BP.
And I sort of agree with jkmom... you don't have to mention Malarone, Lyme, or anything else, if you don't want to. Or just mention that it's something you had in the past. But it depends who referred you. If your Lyme doc is a PCP and referred you, they sometimes share info, so would find out anyway.
What did your LLMD say about your BP? Did he/she ever mention it could be from a tick disease, or perhaps as a side effect from a medication? I see my doc tomorrow and am now curious if Babesia can affect heart rate or BP... maybe I'll see if I can squeeze that question in.
And I'm not sure about dosing for those specific BP meds, but for my own heart meds (Coreg + Altace) I separate the doses. If you take one in the morning, one in the evening, it may offer better BP control (ask your doctor first before doing this though).
Posts: 584 | From NY | Registered: Feb 2009
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seekhelp
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posted
WOW, I called that Internal Medicine doc's office to ask something. He called me back and was very, very rude. He does not like me.
He basically said I'm not your doctor, want nothing to do with you and don't care if your blood pressure is elevated. He said he doesn't need to give me any advice because I'm not his patient.
He said my case is too complicated supposedly and then proceeded to say he doesn't even barely know the Neuro who referred me to him and said her name backwards. He said he doesn't know why she even bothered sending me. I was told a 143/85 BP sitting is nothing he worries about and the fact it goes up quickly upon exertion is not his issue - go talk to old PCP who knows your case.
i tried to stay civil and he pretty much hung up on me when I said well I guess we have nothing more to discuss. He said no charges for the appt, EKG, breathing test, etc. Just don't bother him anymore.
I must've made one hell of an impression! I've never had any doc do that to me. What a sick feeling to be talked to like that when all you wanted was help for a valid issue and were told that physician was a blood pressure expert. Sad world, huh?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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It is obvious that the doc wants no record that he was unwilling or unable to help you.
Does your insurance require a referral?
Could you just go to an urgent care facility and tell them you think your blood pressure is high and maybe they would change your blood pressure meds or refer you to someone?
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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seekhelp
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Member # 15067
posted
Bea, my urgent care co-pay is ridiculous - $50. Much, much cheaper to see a PCP. Most Urgent Care centers here are staffed by the worst, uneducated physicians ever w/zero regard for maintenance health issues. if you have a cut, they band-aid it. They could care absolutely less. I'd rather burn my $$$$.
No referral needed for me, but guessing Dr names out of the guides is futile and in this case a doctor referral was as well.
If meds are changed, I want follow-up care and tracking. Not here'a drug and don't come back. There's one PCP I know here who is decent that could probably help, but of course he's in the 1-2% who don't take my PPO - darn.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Seek, I'm trying to think how you could get a good referral for a new cardiologist.
Do you live near a larger city with a well respected hospital? Teaching hospitals are usually good a good start, they have to stay up on the latest medical advances.
Most hospitals have websites where you can pull up profiles on their physicians. See if one profile stands out to you. Then call them up, see if they might be able to help you.
Another way to find out information is to give the hospital a call. Most have a physician referral service. You could also speak with the operator/front desk staff. Ask who they would see if they needed to pick a good cardiologist. Also, call up to the cardiac floor. Again, ask a staff member who they would pick for themselves or their family members. If they are hesitant, tell them you just want an opinion not a referral.
People talk. Usually all the staff (including housekeeping, foodservice, etc) in the hospital know what doctors are best for each specialty. They can tell you Dr. X has great diagnostic skills but poor bedside manner, or Dr. X is known for helping the sickest patients, or Dr. X is the most well rounded physician you could ask for...
Word of mouth is usually the best way to find out real world real patient experiences. Seek, it's not easy but you have to keep looking for a doctor that cares enough to take the time to listen and help. You are worth it.
Posts: 5237 | From here | Registered: Nov 2007
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I wish you would have asked before. I see a cardiologist in Novi (Providence Park), not to far from you. He is Lyme literate, believes in chronic lyme and CO-I's.
He is very pleasant and listens to you.
(Fatigue of a beta-blocker)
He has me on a baby dose of Metoprolol 25-50 mg daily. I have no fatigue other then what is generated by this sick sick disease.
Beta blocker best thing ever for my POTS and slightly high BP.
Anyways, getting info together for you and will send you a PM. Go see him and tell him hello from me.
-------------------- HERX is a Four Letter Word! Posts: 716 | From If you're going through hell, keep going......Winston Churchill | Registered: Apr 2007
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Thanks so much BigStan! It sounds like a good lead. I'll call that doc.
That's good advice to Sammy. I have tried that before and had success. The only drawback is having TBIs makes for a whole different situation at times. The nicest physicians can change their colors if they are against chronic Lyme. It's not fair, but reality.
Lymetoo, believe me this doc didn't waive charges out of compassion. Bea has it right. He wanted his hands washed from me.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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