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» LymeNet Flash » Questions and Discussion » Medical Questions » Lyme carditis

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Author Topic: Lyme carditis
OtterJ
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Has anyone done the research and can provide me with a few scholarly links regarding Lyme carditis and Lyme carditis and females? I need rebuttal material for a lung doctor who thinks this doesn't (Lyme carditis) last very long
Posts: 474 | From Oregon | Registered: Feb 2011  |  IP: Logged | Report this post to a Moderator
SickSam
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The heart block it causes normally does resolve quickly, but not alway the carditis. I've had carditis for at least 2 1/2 years now. I'm not sure of any literature that proves its prolonged existence though. Sorry ):
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OtterJ
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SickSam, thanks. I am deferring to my LLND on this for treatment and I have an appointment with a cardiologist. I'm afraid I my Lyme diagnosis, CDC positive in 2010 will be minimized and I won't get the care at the outset for my symptoms. Why wait until one's heart stops?
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hopingandpraying
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Here are a couple of links I found which might be of help:

https://sites.google.com/site/marylandlyme/system/app/pages/search?scope=search-site&q=carditis

https://sites.google.com/site/marylandlyme/system/app/pages/search?scope=search-site&q=Lyme+carditis

[ 05-19-2017, 12:11 AM: Message edited by: hopingandpraying ]

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SickSam
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I agree OtterJ. I finally gave up on cardiologists though. Every LLMD I see, when I tell them my symptoms, they are quick to recognize that I have either myocarditis or pericarditis, but I've never been able to get a cardiologist to acknowledge it. My heart block has resolved though, so I'm hoping and praying my ticker will keep on ticking!
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Keebler
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Talk to the leaders of this group [link below] who will know how to work within the pressures the IDSA puts on the Oregon Medical Board and their doctors. The IDSA mindset about lyme is a major stronghold in Oregon. And chronic lyme is very much against what they stand for.

Find out more about how they think in order to figure out how someone under that governing body works.


The OLDN may be able to help you determine what to ask for - & how to ask for it - with a cardiologist and what you cannot expect. They've had people from all over the state for decades who have shared with them both their hurdles and successes with medical [word loss[[.

By leaving lyme out of the question, there may be key things to ask or focus on regarding functionality.

Of course lyme can affect the heart in a myriad of ways but there is not likely one cardiologist in Oregon who would ever admit that, even if they knew it. To talk about lyme can cause them to loose their license.

There is nothing at all they would do to address lyme, anyway. Although, my big problem with any doctor not lyme literate is that what they don't know can greatly cause damage in things they might suggest, either procedures or Rx since lyme changes so much about how the body works / or does not work.

However, maybe you could find who might understand - somewhat - yet leaving lyme out of the conversation [for their professional safety]

still be able to look at your heart functions / tissue strength, etc. for a good exam.

Also consider that how the heart works has so much to do with adrenal issues / cortisol, etc. that lyme complicates. And that's an area that most doctors just aren't going to get into.

Your LL ND should know if there are any doctors who might serve you in some way regarding your heart questions. Your LL ND should also be able to suggest other avenues to determine the situation and also what might help.

This group is also working to help change for the better the way doctors in Oregon learn about lyme TBD / work with lyme patients. It's an uphill battle yet call them to find out how their hard work might help your search.

There are also other COINFECTIONS to consider that can affect the heart. Ask for whichever other TBDs you may be dealing with as to if those might be another way to approach your situation with certain heart doctors.


http://www.oregonlyme.com/home.html

Oregon Lyme Disease Network - OLDN

OLDN will know the POLITICS involved and which doctors are under more pressure to disavow lyme / TBD.
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[ 05-18-2017, 03:19 PM: Message edited by: Keebler ]

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Keebler
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Be sure to read all you can from the cardiologist and lyme literate author (though it's not his focus as he is not an LLMD yet does know about and has written some about it)


Stephen Sinatra
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Keebler
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Many of the things that affect the heart - inflammation, rhythm, might be connected to low magnesium that is so very common with lyme.

Certain Rx also deplete magnesium. Good articles here on the heart and magn.

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=123746;p=0

Topic: MAGNESIUM - Informational Links set
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Keebler
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Rereading your orig. post, I see you will see a lung doctor, not a heart doctor, though you asked about heart issues.

I often speak of "cardiologist" in my reply. Just pop in whatever specialty. Too tired to correct.

As for lungs, magnesium also can help lung function. But a lung doctor won't be very concerned with your heart.

Also, IMO, it's just not worth it to try to convince any doctor of evidence in lyme cases as it's not the way they work in Oregon

and - even in other cases, even if they were to read cases with an open mind, this

is still about your body. What is going on - with or without a diagnosis of infectious disease history -- might be the more productive avenue to stroll down.

How's it all working for you? Likely, not great or you'd not be seeking answers. Still,

within the scope of what they do, is there anything they can look at that might help shed light?

Do not expect them to work outside of they way they've worked for years. It's just not what they do. They cannot learn how to be a good doctor to you if you have symptoms [directly, indirectly] they don't know about and even want to argue about.

Even if they were to say "oh, yeah, that's interesting" they do not have the training.

Lung doctors love to prescribe steroids. Just be sure not to fall into that trap. Steroids can make lyme so much worse.

Call the OLDN and ask if there might be a better choice to consult for specialist search. If anyone knows, besides your LL ND, they will.

OLDN will also know if any medical article might be of help

& help you formulate what you are seeking and how to put that to a doctor.

You might also contact LymeDisease.org & their Wonk person who does so much to make these kinds of solid connections. Still, it won't likely convince any doctor in Oregon or train them but if you want to have an article or two, they have lots of knowledge over there.

www.lymedisease.org

Pamela Weintraub's writings might be of some help as well, she's a very LL journalist.
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[ 05-18-2017, 03:06 PM: Message edited by: Keebler ]

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Keebler
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Along the line of communication effectiveness, something so very difficult with lyme / TBD in the picture with doctors who are uneducated & undereducated or rely solely on IDSA for their "education"

is the mindset of a doctor, their attitude in general to patients. THIS is key is success for patients finding good doctors.

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=030921;p=0

Topic: "Difficult Patients" code label too often used by doctors that can follow patients in their charts &

HOW DOCTORS THINK -- this part might be of help in formulating an outline for any doctor's appointment to help figure out how YOUR doctor thinks.

Local support groups might also offer some insight into individual doctors. For specialists you might also seek out support groups for those kinds of diagnoses to survey various patients on a specific doctor's attitude.
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Keebler
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http://tinyurl.com/l9mxcm9

Empire State Lyme Disease Association

Various Links to Articles & Medical Abstracts on the topic of CARDITIS / HEART INVOLVEMENT

& several for: Cardiac symptoms from other tick-borne diseases


http://www.empirestatelymediseaseassociation.org

their home page
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Keebler
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Also some good articles, though most seem from advocacy organizations [top tier, yet regular doctors might not see them as that] yet they might include medical citations more relatable to MDs.

Even without a certain phrase in quotes, this open phrase brings us some good links:

Google: how lyme can change the heart
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Keebler
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More specific to concerns of those affected by lyme - and also some aspects that non-LL doctors might be able to "take in"

Google: "Paul Cheney, MD" heart

He has done a lot of work for the heart in regards to ME / CFS. He, in fact, has personal experience with heart matters, too.

You might also find the CFS / ME support group for your area and see if they can help you with a specialist who is more open to such matters, even if not "lyme" specifically, if a doctor is open to CFS / ME that is helpful [though also in Oregon, CFS is often discounted by the Oregon Medical Board]
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bullmastiffluvr
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I have a cardiologist who has treated a few patients with Lyme carditis. He has been trying to get my pcp to believe in chronic Lyme. I am having irregular heartbeat and orthostatic hypotension due to Lyme. I hope you get the help you need.
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