posted
Update 4/10: Good news! My PCP did NOT write "dysphoria" on the form.
She wrote "dysphonia" on the form she gave her incompetent nurse (who has made many, many screw-ups in the past), and she wrote an "r" where there should have been an "n."
Dysphonia relates to my speech problem and is a valid diagnosis.
Unfortunately, the hospital doesn't do 30-day monitors, so I'm still not sure what I'm going to do.
I want to see if my LLMD will rx IV abx for me, and if so, I'll try to get a peripheral line at the same time as the cardiac tests.
My PCP has been vindicated. Yay!
* * * *
I wrote a list of bart sx I have for an LLMD appt basically just to try to get across how convinced I am that I have bart, so that we can treat it, regardless of test results.
I listed heart palps - not because I was concerned about them, just as part of my list - but she said my PCP should order an EKG and holter monitor.
So, i started checking my bp/pulse just to see, and my resting pulse is 90-110 (which it didn't used to be) and sometimes the "irregular heartbeat" symbol appears on the display (which is also new).
So, I told my PCP all this and she asked me, "Are you short of breath? Chest pain?" etc., and I said, "yes, yes, yes, but those could all be from babs or other..." and she said yeah, but she ordered EKG, echo, and 30-day monitor.
On the order slip she put a bunch of dx, and one is "dysphoria," which sounded suspiciously psychological. So I googled it, and it basically can mean anything from "unhappiness" to "mania" to "agitation" to "depression," etc.
But I was not telling her about any psych sx! And she has never pulled a psych thing on me before, even w/all my other illnesses that are often pooh-poohed by the medical community.
Here's my Big Fear: I go to the hospital, which will make me really sick for a long time after, to get these tests and then EITHER:
1. Everything comes back normal, so they think I'm a malingerer or nutcase
or
2. Things come back abnormal but there's really nothing to do about them except continue to try to treat Lyme & cos, which is what I already want to do.
So, is there any way this will be productive? Is there any point?
And has anyone had these battery of tests and had them all come back normal?
Thanks!
[ 04-08-2009, 11:44 PM: Message edited by: swachsler ]
Posts: 223 | From Western Mass. | Registered: Nov 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Just to be safe, It might be good to have a an EKG and holter monitor but, frankly, I'd get a new doctor ASAP. I think you are correct about if they come back okay being branded for life.
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They may be able to wait until you get a good doctor who can see the full picture. Besides, a holter if very tricky to record all the things lyme patients experience. Even an EKG is not always enough. But, get a new doctor and address it with them right up front.
The EKG can be done in a doctor's office or out patient clinic. It is short, you don't take meds and it is non-invasive. Very easy.
the Holter monitor is a device that is attached with sticky pads on your chest and you carry a hand held device. No pain, no drugs. You would have it put on at an out patient clinic.
I had both done when I had lots of heart skipping. Both were fine. the Holter monitor was not able to record the skipping as I had to push a button when it happened and by then it was too late to record it.
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I am livid that your GP put a psychological dx down for this. That is uncalled for even if you were to have had that as a dx. And who is she handing out such dx. But we have all had worse happen. Believe me.
GET A NEW DOCTOR.
Are you being treated for lyme? By a LLMD ? If so, as the LLMD for some ideas. You need a Lyme friendly GP. Your local lyme support group may help.
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In the meantime, there are some things you can do to help your heart. I assume you food and self-care habits are good.
Supplements that are good for the heart palps: Magnesium is best. Fish oil and CoQ10, too. And Hawthorn Extract.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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An "echocardiogram" is also very easy. Out patient. No drugs, no needles, no pain. However, for patients with severe fatigue, it's best to do the echo lying down and, again, standing up.
(You can look up all the procedures at Wikipedia. And while Wiki has totally screwed up their lyme page, for some of this other stuff, it's a big help for the beginning of a search.)
There is a lot in this thread, but the reasoning for having the "echo" done a couple different ways is here somewhere:
Thanks for responding so extensively. I haven't looked at the links yet, but I will do that in a minute.
The reason the hospital visit will be a problem is not that I'm scared about the procedures. It's that I have extreme MCS and CFIDS, so being in a hospital (which is a super toxic environment), will make me really sick, regardless of what they do.
I do have an LLMD, and we are treating - bicillin and art at the moment, have had to go off mepron and zith. She wants various tests before we start other stuff.
I consult w/LLMD about Lyme & co but have to see PCP to get stuff ordered, etc., and so LLMD is not working without a net.
This is the sad/frustrating part: This is the best PCP around! I am so lucky to get her. She has a huge waiting list. I shopped for years before I ended up with her.
I have multiple chronic illnesses and disabilities that are just as controversial as Lyme. Finding someone who generally lets me oversee my own care is a miracle.
I can't switch my LLMD or my PCP. I'm homebound and have multiple disabilities and they both accommodate by doing most stuff by fax and phone. That takes years to build up, and even then most doctors wouldn't.
Even before Lyme (and since) I have tried others. Others in W. Mass face the same problem -- slip pickings out here for medical care.
So, there has to be another way to handle this. I just don't know what it is.... This thing has me really bummed out (must be dysphoria - ha!).
Posts: 223 | From Western Mass. | Registered: Nov 2008
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
Wait, it has a 'irregular heartbeat' symbol on yours????? I have my own blood pressure and pulse monitor and have never noticed that.
I have had several EKGS, several Echo's and I've worn a halter monitor as well.
I had them done because I too had tachycardia and palpitations. I was having very bad episodes of palpitations that would just not stop and kept happening one after the other every few minutes. It got so bad I couldn't get breaths in edgewise and almost fainted from it.
The halter monitor came back normal... but then when I get records of it later, I read through it and it said that I have sinus tachycardia of up to 150 bmp while resting... though I guess that's NORMAL to them??!!
My EKG has always been normal. My echo is usually normal, but shows tachycardia and tricuspid regurgitation, which I was told is normal because many people have it... I really don't know though.
I've had to be on Toprol 50mg for the tachycardia for almost two years now. Started with 25mg but that only helped for a year and had to go up to 50mg because I was having tachycardia again even when I took the med... Which is odd and kind of scares me. I really don't want to end up having to take a higher dosage than 50mg!!! And I'm also afraid because I'd rather not have tachycardia and heart issues the rest of my life, but I'm afraid they are permanent as I've had the tachycardia for as long as I can remember, probably soon after I was bitten by the tick.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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klutzo
Frequent Contributor (1K+ posts)
Member # 5701
posted
An echocardiogram is well worth it, since so many of us develop Mitral Valve Prolapse, which will show up on an Echo. Make sure you do not drink much for 12hrs. before the test.
The cardiac event monitor is FAR superior to a Holter, which can miss much. It is what you referred to as a "30 day monitor".
I felt the same way you did going into this testing, but both the above tests were very abnormal for me, and I now take a supplement and a drug that help a great deal.
klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
I had all three of these in the last month. It was frustrating like everything else. You know when they take blood tests or MRIs and say they were normal but later when you get the report it shows stuff wrong?
That's what happened to me with this stuff too. The holter monitor showed high heart rate, a heart arrythmia, and another thing that I don't know what it means yet, I still have to look it up. But the cardiolosist said everything was A-OK. And based on my normal heart tests, my neurologist said they've really worked me up with every test they can,and it all looks normal. (I didn't know neurologists went by heart tests).
But if your Doctor suggests these tests by all means get them in case they do show something. But I'd say get a copy of the report to read yourself to make sure that if they say it's normal that it really is.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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You said that you have MCS and that is an obstacle with such procedures. I know. Same here. (But as equal bill with sounds and harsh lights so I really steer clear of medical centers, big time.)
Without apologies or even a hint of embarrassment or bewilderment -- about having them accommodate MCS (as they should) -- you might call the patient advocate for the hospital outpatient clinic where the tests will be performed and ask:
"What is your protocol for cleaning products used before patients come in who have multiple chemical sensitivities and to request that staff avoid colognes for that day?"- or
"Would it help for me submit one of the protocols for MCS used at another hospital -- or have you done this before as accommodation for other MCS patients?" and ask for the name and direct phone for the person who would be your contact so that this works smoothly.
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I have seen two such MCS protocol sheets for hospitals but I can't find them in my file. You might contact one of the main MCS organizations and ask for such a protocol.
This Google search gives you some good links to start with: "MCS protocol" hospital
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You might also cross search with "Diedre Imus" as she has created a program for hospitals to stop using harsh chemicals not just for the benefit of patients who are sensitive but for everyone. I think her organization is based in Texas but she has contacts all across the U.s.
And, I also think her program is designed for Children's Hospitals but, again, it may be applicable across the board.
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Of particular importance will be the soaps or "air fresheners" in the restrooms that will be nearby your procedure. That, alone, can knock me for a major loop - for days afterward.
But, again, do not put yourself down or sound like you think this is weird. It just is what it is and you simply have to arrange accommodation as you would for any other disability.
If fact, if their patient advocate does not seem to get it, ask for whoever coordinates accommodations under the Americans Disability Act for their property.
I do find that honey works better than vinegar, so to speak.
=====
All this said, with the (necessary and understandable) procedures to prevent MSRA (a resistance staph infection), hopsitals may not want to switch products or avoid using some of the antimicrobial sprays.
However, through those who have gone before you, be sure to see what they has been done to make everyone happy on this note. UV lights are used in some places, for example.
Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Well my doppler echo wasn't normal.
However, my nuclear stress test indicated my heart to be "perfect".
If I knew all of the diagnosis including congestive heart failure,
Possible pulmonary hypertension, etc.
That absolutely panicked almost into a heart attack,
I would have just insisted on skipping the EKG, echo, etc
And just have done the nuclear stress test.
It was such a relief to know that at least
One of my body parts was working.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Is there any chance that the diagnosis said "dyspnea" instead of dysphoria....if her handwriting is bad? Dyspnea means shortness of breath.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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Keebler, yes, we think alike, grin, I was already planning on talking to the patient advocate.
I will do as much as I can to reduce exposures, but just opening the windows is an exposure if someone is using a woodstove or doing laundry, so the hospital means multiple unavoidable exposures, no matter how much advocacy I do.
However, it's a good reminder to find that MCS hospital protocol and fax that ahead. I'd forgotten about that. I have my own protocol info on note cards I take with me, but the other info looks more official.
Dekrator, she wrote multiple dx, including dyspnea, SOB, palp, etc., but dysphoria was on there too, in addition to dyspnea.
I've decided to fax her directly and ask what she meant by that dx and ask her why she put it on there. I'm trying to keep an open mind.
I've also decided to see if my LLMD will put in an order for rocephin for a peripheral line at the same time. If not, I think I will cancel the heart tests.
So, I'm going to take a wait-and-see approach.
Disturbed, Whatever is happening with my heart is not nearly as bad as what you have had going on (good for me, bad for you :-( ), so I don't feel it's as likely to show up on tests.
Lisa, good reminder about getting the copies of the tests and notes myself. I *still* need to do that with my MRI! Augh. I keep forgetting. It's like I'm neurologically impaired or something. grin.
Thanks for the ideas and moral support, everyone!
Posts: 223 | From Western Mass. | Registered: Nov 2008
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