I'm currently waiting on an LLMD appointment with a notable doctor here in NJ.
When right before I made the appointmnet or what actually persipitated me to make it, I had what feels like a heart attack. Very scarry!
Can't breath, sudden pain shooting up my back and neck and my heart doing sumersauts.
I walk into this cardiologist office and tell him, I think I had a heart attack.
Echo cardiogram and 21 day monitor picks nothing up.
Then I tell him, my theory, that I think I might have Lyme what with a past history and unexplained back pain.
I could just feel his eyes rolling even though I didn't look to see if they were.
He then went into this, what he called his soapbox about how careful I must be as there are a lot of quacks out there that think a patient may need more than the 28 days of meds.
How these quacks think the bacteria hide. How he knows the head of reumatology at John Hopkins and it's all bull.
How these poor people are taken advantage of by these so called Lyme doctors, having to pay out of pocket because we're desperate. And why isn't the AMA of CDC or I forget TAKE THEIR LICENCE AWAY!
Well, needless to say I won't be going back to him and I only asked him because I was wondering what Lyme does to the heart, and he said it wouldn't make it beat fast if anything it would slow it down.
So beware.
Trish
Posts: 305 | From NJ | Registered: Feb 2001
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posted
Yes, I have learned that I tell no doctor about lyme anymore, not even my OBGYN and I am planning on getting pregnant this fall and will be on abx.!
Sorry you had to deal with that crap. The rheumatologist I saw basically told me the same type of thing- those doctors are quacks, lyme should be only treated with 28 days of abx, blah, blah, blah......
well at least i am pretty much in remission now and it took 17 months of abx. and lots of other things!
Posts: 871 | From NJ | Registered: Mar 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Trish,
So sorry you (and thousands more patients) have to go through that - your experience brings back many similar, and searing, memories from GPs, ID specialists, cardiologists, neurologists, E.R. doctors, rheumatologists, psychologists . . .
. . . . only my ear specialist got the real picture about lyme but then he wanted to infuse steroids and follow up with oral steroids for weeks which would have been disaster had I not known to avoid that.
It's also so sad that the good LLMDs are put down like that from the doctors who are ignorant in this matter.
What also gets me is that the ignorant doctors don't give patients credit for having some intelligence and being able to do some good research on their own, being able to discern between what's valuable and what is not.
Hopefully, education will prevail. In news, Spring of `09: -------------
posted
Many things may contribute to cardiovascular problems as we know; smoking, poor diet, etc.
Of all the bacterial things can clog and inflame arterial vessels, which ones are the BIG culprits? I believe that Cpn (and other mycobacteria) are the biggest potentiators of CV disease, perhaps causing disease in millions of Americans. Yup, I said millions...but I hope I am wrong.
How many decades will it take this country to find an answer!? It need not take so long, as there are some smart scientists that have demonstrated Cpn's role in disease (e.g. university of Mass.). Also, search PubMed and you will find plenty of supporting evidence.
-------------------- My biofilm film: www.whyamistillsick.com 2004 Mycoplasma Pneumonia 2006 Positive after 2 years of hell 2006-08 Marshall Protocol. Killed many bug species 2009 - Beating candida, doing better Lahey Clinic in Mass: what a racquet! Posts: 830 | From Mass. | Registered: Aug 2006
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lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
All messages are sent from the brain. I honestly believe that the tachycardia we all get starts from here.
I have had a Virtual Heart Catherization, a true invasive Cardiac Catherization, 2d Echo, Holter Monitor, a Gazillion EKG's, Tilt Table Testing, Stress Tests, and tons of Blood Work.
Tilt test was pos., but the Dr.'s admit they don't know what causes this. Even the literature suggests that at least POTS is possibly caused from an unknown virus or bacteria.
The brain is so complex and even though much is understood, so much more is not understood.
Think what happens when you bang your finger with a hammer or something fall on your foot/toe. It takes a few seconds for the pain sensation to kick in.
This is because the signal travels up the nerve into the brain, is then processed, and all sorts of other nerve signals are sent out. One for pain, one for inflamation, one for white cells to go to the site, etc.
If Bacteria gets intertwined with the nervous system, Specifically spirochetes, I think it is safe to say, that all sorts of crazy signals can be sent out when they shouldn't be.
Untangle the wires and everything begins to work as it should again.
Sure, this is a theory, but many things are based on theory. Usually, if it makes sense, it's true.
The Cardiologist said "If anything, it would make the heart beat slower"
This shows his true ignorance, as he dismisses Lyme, but then says, if it is Lyme than this....
So, instead of sticking to there is no such thing as Lyme, he actually accepts it in his second statement.
I don't wish this on anyone, but if it takes an ID Dr. or a Cardiologist to get this in order to find us the cure than so be it. I guarantee you, when this happens, and I'm sure it does, their entire process of thinking changes.
I personally know a former News Anchor for NBC who came down with Lyme. Her husband is an ER MD. I keep touch with her and after trials and tribulations with abx, the are now turning to Rife. BTW, her husband is very open minded to all that she is going through and believes she has Lyme.
Off to bed, have a good night everyone.
LT
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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We have all had to put up with doctors who refuse to believe Lyme can do any or all of the damage and pain it causes.
When I was under treated, I started getting these heart sensations - I guess they could be called panic attacks. Once in a while I would go to the emergency room. My heart was always fine. But I believe Lyme can cause all type of bad chest and heart sensations.
I am very cautious to only go to Lyme treating doctors. Sorry you had to go through that experience. Hope you have only positive medical appointments from here on in.
Which brings to mind a thought: Have any Lymies considered going to med school? Wouldn't it be great to have even a few more doctors on our side?
So here's my challenge to the Lyme Community: Someone please consider going to med school. It would certainly be nice to have at least one more medical friend out there.
In the mean time, I guess we all have to keep- or try to keep smiling.
Your Friend,
We'll Win
Posts: 107 | From maryland | Registered: Feb 2007
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
... his friend at Hopkins. They diagnose anxiety and need a spinal tab for that.
Posts: 1834 | From US | Registered: Oct 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I'm sorry for your experience. I know it oh so well. I don't like to wish bad things on people like this....but sometimes. Heartlessness/lack of compassion is mean. Perhaps the old addage has merit...what comes around, goes .....
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
quote I could just feel his eyes rolling even though I didn't look to see if they were.
Trishden, hold that head up girl. He is no better
than you and you are the one in control. We have
all dealt with these people. Glad you don't have to.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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bettyg
Unregistered
posted
trish,
also get copies of all your medical files, labs, etc. you've had with him especially this last visit.
if he's got a bunch of HOG WASH in it; challenge it so they have to keep your version with your file, and if anyone wants your file copies, ssdi, etc; THEY HAVE TO SEND YOUR COMMENTS WITH HIS ORIGINAL DICTATION NOTES!
yes, hold up your head with pride and stand your ground, I DO! 40-50 local drs. caused me to be this severe ...
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