posted
Hi all. I've posted before and I always recieved alot of support and thank you for that.
Having a rough time right now. I saw Dr.W here in seattle. Told me I probably have Bart as well as Lyme.
at the moment, I'm having alot of left arm and left shoulder discomfort. And a pretty constant chest pain. sometimes in jaw and teeth, as well. Vision has been greying alot as well. muscle twitching, of course, and spine pain and crunchiness.
basically a pretty intense resurgence of my monthly cycle symptoms.
I have been to the E.R. LITERALLY more than a dozen times in the past year for the chest pains and left arm pains. the pain is right around the pulse and arteries behind the bicep and forearm muscle in elbow.
But every ekg/echo/troponin (cardiac enzymes)test comes back clean as a whistle. I run alot and do a bunch of exercise. I wish I could convince myself that I'm not going to have a heart attack, but sometimes xanax is the only answer to the panic...
I'm moving to NC and have gratefully recieved some names of a few nearby LLMD's . hopefully I'll find a way to pay for the Igenex test (fingers crossed)
Just writing this is kind of therapeutic.
thank you all for your ears and support.
Alex
-------------------- endless peace, Baladeva Posts: 16 | From Salmon Arm | Registered: Nov 2006
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posted
Welcome, Alex!! We're so glad you found us!! That frequent chest pain, etc. would worry me to death! Hard to know when to go to the ER, isn't it!!
I hope you enjoy being here!! We'll do our best to welcome you and to keep you informed!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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If you are having chest pain, running and exercising could be very dangerous. Be kind to your body. It really is trying to tell you something.
You might ask your doctor about a cardiac impendence test / QT
=========================
Abnormal Impedance Cardiography Predicts Symptom Severity in Chronic Fatigue Syndrome by Arnold Peckerman, MD
Abnormal Impedance Cardiography Predicts Symptom Severity in Chronic Fatigue Syndrome.
ARTICLES American Journal of the Medical Sciences. 326(2):55-60, August 2003.
Peckerman, Arnold PhD; et.al.
Abstract: Background: Findings indicative of a problem with circulation have been reported in patients with chronic fatigue syndrome (CFS).
We examined this possibility by measuring the patient's cardiac output and assessing its relation to presenting symptoms.
Methods: Impedance cardiography and symptom data were collected from 38 patients with CFS grouped into cases with severe (n = 18) and less severe (n = 20) illness and compared with those from 27 matched, sedentary control subjects.
Results: The patients with severe CFS had significantly lower stroke volume and cardiac output than the controls and less ill patients.
Postexertional fatigue and flu-like symptoms of infection differentiated the patients with severe CFS from those with less severe CFS (88.5% concordance)
and were predictive (R2 = 0.46, P < 0.0002) of lower cardiac output. In contrast, neuropsychiatric symptoms showed no specific association with cardiac output.
Conclusions: These results provide a preliminary indication of reduced circulation in patients with severe CFS. Further research is needed to confirm this finding and to define its clinical implications and pathogenetic mechanisms.
====
You can also search PubMed for "Cardiac Impedance" and "Long QT" or "QT syndrome"
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Chest pain was my very first symptom that had me going to the doctor in my search to find out what was going wrong in my body.
They did all the normal heart tests and even ended up doing a heart catherization to be even more sure. Everything came up clean.
But it didn't stop the chest pain, that would run down the left shoulder and arm. I do tend to think that in my particular case, it is related to one of the co infections, either bart of babs since I'm being treated for both right now and will have it coming back in herxes.
It's scarey since you never know whether THIS time something is going wrong that is different or if it's the same ole, same ole.
They always say, 'better safe than sorry', so you may need to keep getting it checked out. Good luck and keep us posted on how it goes. But for me, it's a major symptom and probably my worst as far as pain.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
welcome Alex
sorry to hear you have so much pain now Good luck with your move & am hoping with further treatment you can find some relief soon
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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tailz
Unregistered
posted
I ended up in the ER on several occasions for the reasons you describe. In many cases I learned my 'heart attacks' were a combination of food allergies/intolerances and electromagnetic field exposure of some nature. I would seriously look into getting a gaussmeter to determine what levels of electrical, magnetic, and microwave fields you are being exposed to both at work and at home.
I do/did(?) have aortic sclerosis which would have eventually led to a heart attack or stroke, so I do believe these symptoms are important to follow up on, even if they remain unexplained. My neighbor's son actually suffered a stroke, and he was only maybe 8 or 10 - something like that.
I have found this to be KEY to determining how symptomatic I will be in any given day. My home has high levels daily. Personally, I believe the electrosmog we live in is responsible for the persistence of these infections, no matter which infections any of us have.
These fields cause bacteria, yeast, parasites to reproduce at enormously rapid rates, while at the same time reducing our body's capacity to fight them off.
"All truth passes through three stages. First, it is ridiculed. Second, it is violently opposed. Third, it is accepted as being self-evident." - Arthur Schopenhauer
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
HEY!*))!* !*)!)*)!!)!
SOunds like you are in the right place-!! My chest pain was Babesiosis and resolved on Mepron but my daughter & I both developed MVP after Lyme/Babs which gives sporadic pain as well. I would def insist on a cardiologist to check yourself out!!! Yup, had twitches, had all thatstuff, all gone with longterm abx therapy!Thank goodness*)!! I hope yours goes as well.
Best wishes, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
Hi baladeva,
I have had the chest pain too, it's so scary. I am glad you had it checked out. After I was bit in 2001 I had terrible chest pains/ heart palpitations, but everything would always check out ok at the doctors office. I had the ekg and echo done too.
A lot of my symptoms cleared up for me with treatment.
My son had to see a pediatric cardiologist after he was bitten in 2001, he developed a heart murmur, which did improve for him with lyme/babesia treatment. These infections do affect the heart for so many folks.
Hope you feel better soon, keep us posted.
Just sharing my experiences.
Posts: 6641 | From Michigan | Registered: Jun 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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This is one reason why I believe caution is so necessary with aerobic exercise until under proper treatment and a LLMD says it's safe. EKGs, etc. cannot see everything.
cytotoxic effects - excerpt: The pathogenetic causes can be manifold, such as direct cytotoxic effects in HIV or Borrelia burgdorferi infections, induced vasculitis and local activation of coagulation factors as in lupus erythematosus or chronic inflammatory bowel disease.
As systemic immunological disorders, internal diseases in gastroenterology, rheumatology and infectiology can, in addition to the bowels, potentially involve the musculo-skeletal system, the immunological system and heart structures.
All structures and functions of the heart can be affected. Pericarditis in lupus erythematosus and chronic inflammatory bowel disease, myocarditis in HIV infection and lyme disease are examples of cardiac manifestations of internal diseases.
The pathogenetic causes can be manifold, such as direct cytotoxic effects in HIV or Borrelia burgdorferi infections, induced vasculitis and local activation of coagulation factors as in lupus erythematosus or chronic inflammatory bowel disease.
Improved treatment options have led to more long-lasting courses of internal diseases, such as in infectious diseases, lupus erythematosus and chronic inflammatory bowel disease,
thus cardiovascular complications such as pericarditis and myocarditis gain increasing importance as a consequence of chronic disease and therapy-related damage.
PMID: 17992497 [PubMed - as supplied by publisher]
I've had All my symptoms of lyme for about a year and a half now, but only the past 7-8 months with this additional left arm pain.
The puzzling thing, for those of you who warn me against it, is that I never get the pain as a result of physical exertion. I can run a few miles and not feel any pain or any Lyme symptoms whatsoever.
It jumps on me when I'm just sitting around doing nothing or at anytime, really.
It's funny how we find comfort in not being "the only one" experiencing things. Thanks for embracing me, all.
One thing I'm afraid of is: the Longer I go untreaeted, the worse I'll get and the harder it will be to get well.
I've already gone through a nightmasih existence when I first got sick, and I've gotten so much better. but without any real aggressive treatment and it's definitely not gone away. I think it's getting worse again.
I have a job opportunity and hopefully in the next few months I can make the money to pay for real treatment if I don't keep relapsing.
The LLMD here in Seattle told me that I must have an amazing immune system to have recovered from the initial symptom severity I had without aggressive treatment. She also said that wouldn't last.
I play the lottery all the time. If I win, alot of people with Lyme related poverty are going to get a nice X-mas present.
-------------------- endless peace, Baladeva Posts: 16 | From Salmon Arm | Registered: Nov 2006
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
I get some chest, shoulder, and neck pain when my lymph nodes are congested.
This happens especially when I am getting lots of die-off from treatment.
I wonder if this could be what is causing your pain.
I get relief from some detox products, lymph drainage massage, and from movement of the area, to help drain the lymph.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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echostef
Unregistered
posted
Hello, Having been a cardiovascular technologist for the past 11 years, I just wanted to add my two cents..
The cardiac tests that you have already had are not sufficient for the symptoms you are experiencing. Most people who actually do have a coronary artery blockage (what causes a heart attack) will still have a normal resting EKG. The EKG will not have ischemic changes until the heart is under stress. And even then, a regular stress test is only about 80% accurate.
Your troponin levels will only be abnormal if you are having an acute infarction, that is, even if your chest pain is caused by a blockage, your enzymes will be normal unless you are having a heart attack at the moment the blood is drawn.
Thirdly, an echocardiogram shows the structure of the heart, the valves, the bloodflow, the function, etc., but it is impossible to see the coronary arteries with a resting echo. It can show whether you have had a past heart attack that has caused damage, but it cannot predict if you are going to have one.
You need to have either a nuclear stress test or stress echocardiogram, both which will show you at about 90% certainty if you have any occluded arteries. Or have the new "gold standard" in cardiac testing, the CT Angiogram, which is minimally invasive and will show you at 100% accuracy whether or not your coronary arteries are clear.
I think, with the symptoms you are experiencing, that you really need to have one of these tests done before you continue exerting yourself.
As far as ERs go, they are fairly worthless at diagnosing cardiac ailments unless it is absolutely obvious. Don't count on them as a source of comfort at all.
Also, I don't mean to be frighten you or anything, but if myself or one of my family members were having the symptoms that you are, this is what I would do.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Play the lotto with a buck or two but, please NOT with your life.
You may feel better after running from endorphins that can produce a zippy high. Just being out can do that to.
Reading over your posts: you are not currently getting treatment although a LLMD says you have bart and lyme.
the chest pain, and crunchiness of your spine after running is a message. One doctor seemed to say your luck is running low and to be aware of that somehow.
It was really good to read the previous post from echostef .
We should all copy, paste and have that in our emergency computer file.
Have you discussed the level and frequency of running with your LLMD?
Please . . .please . . . a walk might be okay but, with the frequency and severity of symptoms you currently describe, running could be a huge gamble.
posted
Beladeva - responding to your lower post. I was sick for about 1 1/2 years before dxd & treatment. Treatment has been 400 mgs oral doxy only. I made huge strides initially, then leveled off, then, in Oct (taking doxy since Feb), a horrible, bac-sliding month in every way. Reminiscent of first illness, but not as bad.
My LLMD was not surprised. He felt my rather 'straight-line' progress to that point (of course with bad days thrown it, etc) was the remarkable thing - not the setback. We may change things up as to treatment, or we may not - we're watching carefully. BUT, I think many will say that it can take a couple of years' abx to get on the far side of this - & that's with luck.
I know I'm not adding anything, but I thought you'd like to hear from someone who's having the exact same experience.
otm
Posts: 314 | From east coast | Registered: Oct 2007
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ok so now I'm all freaked. I've been having these pains for the last 8 months or so but with huge breaks in between sometimes. like 7 or 8 weeks sometimes, with no difference in level of physical activity.
I have been told that with the heart, If you're having my symptoms, things only get worse, never better, especially if your active and have a blocked artery.
I never get weakness, shortness of breath ...
I just don't have the money to get these tests done and I'm totally un-insured.
I guess I'll just play it safe and do minimal exertion till i can see the new LLMD or a cardiologist again.
Thanx for trying to keep me safe even though I'm scared ****less now, haha.
-------------------- endless peace, Baladeva Posts: 16 | From Salmon Arm | Registered: Nov 2006
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daise
Unregistered
posted
This is a really good thread.
I had only slight tightening of the chest for a short time, which resolved quickly with Rocephen and Biaxin. I'm glad I figured out what I had so it didn't get worse.
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