posted
For three years I have had extremely severe heart symptoms. I am totally homebound and cannot access medical care due to my severe CFIDS and MCS, so I have had abnormal EKGs but haven't been able to do follow-up. Anyway, for the past three years, I have had a near-continuous crushing sensation in my chest, as if my visceral heart is being squeezed tightly in an iron glove and can barely beat. When I sit up for even a short period of time, the squeezing sensation gets much worse, and it is incredibly oppressive and unlike anything I have seen described. It is accompanied by a sense that the oxygen is being squeezed out of my whole body: I can't think and feel oxygen-starved to the cell. It feels imminently life-threatening, as if I"m having a near-constant heart attack. The symptoms get much worse late at night.
Miraculously, the only thing that has helped recently is the antibiotic Cipro. Other antibiotics would sometimes provide relief for a day or two. I discovered this in early July, after being treated for suspected Lyme. I still do not have a Lyme diagnosis though I had a positive Igenex IFA test, along with a negative Igenex Western blot that showed positive bands 30, 41, 58 and indeterminate band 39 on the IgG.
My heart symptoms really don't seem to resemble descriptions I have read about Lyme heart problems. They are not by any means "mild," but very very severe and constant, definitely the worst symptoms I have. I'm encouraged by the fact that the Cipro seems to be helping -- but this also makes me wonder if the heart problems could be bartonella or ehrlichia. I'm also worried that, if I don't get a diagnosis soon, the one doc who will do home visits here is going to stop the antibiotics.
Has anyone had similar heart problems? If so, what did your tests show, did you have co-infections, and what helped?
Posts: 929 | From Massachusetts | Registered: Oct 2007
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disturbedme
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I have heart symptoms. I don't get the squeezing senstation really.
The problems I usually have are tachycardia and palpitations. Luckily, my palpitations have seemed to get much better since being on antibiotics. My tachycardia comes and goes often. At one point in the day, it'll be normal and then the same night it'll be in the 100's.
-------------------- 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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posted
I still do not have a Lyme diagnosis though I had a positive Igenex IFA test, along with a negative Igenex Western blot that showed positive bands 30, 41, 58 and indeterminate band 39 on the IgG.
Why is a positive IFA being ignored??? Band 39 is extremely specific for Lyme, even if it's IND, a weak POSITIVE.
Bands 30 and 58 are also specific to Lyme.
I would definitely get checked for bartonella since Cipro is helping you.
Babesia causes really bad issues with the heart as well. Have you been tested for that??
Be sure to read the link below, even the responses to the original post. Lots of info there, and specific info on band 41.
I did get a negative test for babesia (Igenex) but I understand the babesia tests can be fairly unreliable.
I forgot to mention that, since the tick bite, I have had severe shaking chills that get worse when the heart symptoms get worse.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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posted
Cipro is very toxic for the heart, for doses of one gram a day or more, on normal people. Sometimes cipro causes irreversible heart damage and alteration of the QT interval (serious condition) but normally it causes arrythmias, abnormal heartbeats, fibrillations, tachycardias, etc. When the reaction is mild, the heart abnormalities turn back to normal in a couple of years or so, after ending the treatment.
Posts: 94 | From canada | Registered: Nov 2006
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posted
That's very disturbing about the cardiotoxicity of Cipro. Do you know where I could read about this?
I have avoided Biaxin and Zithromax because of their potential to prolong QT (my QTc is already moderately prolonged).
The problem is that nothing has helped my heart in 3 years except for Cipro. So it's a rock and a hard place.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Have you looked into dysautonomia? Like POTs and NMH?
Once sit up, my heart beat jumps and at times I get a squeezing sensation with some pain.
This is not uncommon with POTS as the heart is working so hard and fast,
That at times there is less blood in the chambers that cause that pain.
I had a Stress Test done on my heart last year to find out it was "perfect" (Thank God).
This maybe something worth researching for you.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
I had heart problems for a while, sometimes it would feel like someone was beating me in the chest with a bat and a few times it knocked the breath out of me. It always kept me up at night. It is gone now since I got treatment for adrenal deficiency.
Posts: 8 | From CT | Registered: Jul 2007
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posted
I have been dealing with this for the past 3 1/2 almost 4 years as well. the tach and palps that is.
past few nights have been bad and really on my mind. glad to see this thread.
my biggest fear is that this is an indicator of heart block and something more serious is coming.
i also worry taking the ABX thinking this is causing my entire body to work even ahrder processing all this.
does this create more heart potential issues???? what is the board experience of this?
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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posted
MKP-what did you use to treat your adrenal insufficiency, and how long did it take to "heal" Thanks
Posts: 561 | From eastcoast | Registered: Aug 2006
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CaliforniaLyme
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posted
I had bad palps and pain and it was Babesiosis- I never had a positive Babs test- my doc treated me clinically and all that went away. My duaghter had multiple blood babs positives but I never did. Almost all my heart symptoms were Babs. There are many strains of it and even if you are testing for the right strain you can still be blood negative- that goes for Lyme, Babs and Ehrlichiosis- so I would make sure you get treated for Babesiosis if you are symptomatic, which you are- and if you have been diagnosed by a good LLMD as having TBDs-
Take care, Sincerely, Sarah p.s. I also had CFS and MCS among other things and they are all 100% GONE. No symptoms. MCS sucked. I had HME, Lyme & Babs & presumptive Bartonella- My MCS was Lyme & Babs-
-------------------- 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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CaliforniaLyme
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p.s. To CJnelson- I do the Lyme memorial pages (one of them!) and people who have cardiac Lyme tned to get that from the get-go- there is virtually not a single case I can htink of of later cardiac Lyme showing up- the only late Lyme cardiac death was a woman who died from being in a "heat box" and having her body heated to umpteen degreees in an attempt to kill spirochetes- but it killed her- I do not think that can even be blamed on Lyme frankly but on poor treatment choices- so no, I wouldn't worry about abx in that regard- there have been zero cases to that effect in my experience-
-------------------- 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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posted
In addition to Babesia, Bartonella, and Ehrlichia, you might consider being tested for Q Fever as a possible coinfection. It is a rickettsial disease also spread by tick(in certain cases also inhalation), and if left untreated may result in endocarditis, which may be fatal.
Posts: 31 | From USA | Registered: Mar 2007
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posted
LymeCFIDSMCS: The best site to check what can happen after a prolonged or high dose treatment with cipro is www.fluoroquinolones.org
And the best data base to check any problem related with cipro, including the prolongation of the QT interval and others is: www.fqresearch.org
Among all, Cipro and levaquin are the antibiotics with the highest potential to damage the heart, and to prolongate the QT interval.
Posts: 94 | From canada | Registered: Nov 2006
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posted
I have had POTS for fifteen years, but this is very different from that, and from palpitations: this is really like someone has opened up my chest, wrapped my heart in taut wires, put a set of weights on it, and sewed it back up.
I have wondered about constrictive pericarditis, as it feels like something wrapped around my heart that is, simply, constrictive.
I had episodes of what seemed to be angina in the past too, and this is far worse than that. This feels imminently like someone is literally crushing the life out of me -- I can't explain it any other way.
I do have rapid heartbeat from sitting or standing but have had that for a long time.
Does anyone know if babesia, bartonella, Q Fever, etc., cause pericardial symptoms (effusion, tamponade, constriction?) as well as endocarditis? And what would be symptoms common to endocarditis?
Thank you -- this is so helpful!!
Posts: 929 | From Massachusetts | Registered: Oct 2007
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AliG
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posted
quote:Originally posted by LymeCFIDSMCS:
I have had abnormal EKGs but haven't been able to do follow-up. and I had episodes of what seemed to be angina in the past too, and this is far worse than that.
In my non-medical opinion I would think this pain might warrant a call to "911".
People often fail to seek treatment for heart attacks because the onset of symptoms doesn't fit what they think it should be.
If you can't follow up on abnormal EKGs, perhaps you need to go to the hospital where you can be properly evaluated. Immediately upon hearing mention of "chest pain" in the ER, they will rule out heart attack.
If I'm understanding what you're saying, which I may not be, I don't think you should be looking for a diagnosis online, I think you should be professionally evaluated to rule out heart attack first. Especially if your symtoms have become worse since the abnormal EKGs.
That's just my non-professional opinion.
Also, it must be so awful for you to have CFIDS & MCS so severely as to become 100% homebound. My prayers are with you.
Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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posted
I agree with you that being evaluated in the hospital would be a good idea: unfortunately, I really am homebound and can't go.
Also, the hospital is completely inaccessible and deadly to me due to my level of MCS. I'm on the very, very, very severe end of the MCS spectrum, meaning I don't recover from exposures and they can be deadly to me.
The exposures in a hospital are extreme. I did go a few years ago, and once a few years before that -- brief visits for tests -- and I got a lot worse from those exposures and did not recover to where I was before that.
So health "care" is very harmful to me at this point. I would never wish this level of MCS on anyone.
Do Lymies ever get MCS this severely? I wonder if Lyme patients are like CFIDS patients in that the MCS tends to be mild to moderate versus severe as it is in patients who are chemically injured.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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CaliforniaLyme
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posted
I had TERRIBLE MCS and would react to any chemicals with clammy sweats, shaking, convulsive vomiting fits. NO FUN!!! YUCK!
It is fairly common, at least here where I live. Cetainly not UNcommon!!!
Cipro helped me later on and I was on Cipro for a year with no side effects. I am lucky that way with abx- cirpo was great for me*)!!!
But what took away my symptoms - 95% of them- was IV Rocephin- including the MCS- and then 4.9% went away with Mepron & Zith- and the remaining 1% with Cipro*)!*)!!
-------------------- 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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AliG
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posted
I'm having trouble understanding this. Don't they have "clean rooms" at hospitals for dealing with people who have problems like MCS due to chemical injury?
Can't you at least call the doctor who comes out and have him rule it out? Or would you just prefer to die if it is a heart attack?
I think you need to call the doctor AT LEAST and ask him his opinion on this chest pain or you may not have to worry about co-infections, you may be able to just have the coroner sort them out for you!!
Perhaps you could print out this hospital protocol and bring it with you:
American College for Advancement in Medicine 23121 Verdugo Drive, Suite 204 Laguna Hills, CA 92653 949-583-7666, 800-532-3688 Fax 949-455-9679 ACAM Find a doctor [email protected]
American Holistic Medical Association 12101 Menaul Blvd., NE, Suite C Albuquerque, NM 87112 Phone: 505-292-7788 Fax: 505-293-7582 American Holistic Medical Association Find a doctor [email protected]
American Academy of Neural Therapy For more information please call 425-637-9339 or send email to [email protected] Neural Therapy Find a doctor
American Holistic Health Association PO Box 17400 Anaheim, CA 92817-7400 USA (714) 779-6152 American Holistic Health Association [email protected]
American Association of Naturopathic Physicians 2366 Eastlake Ave. E., Suite 322 Seattle, WA 98102 Phone: (206) 323-7610 AANP Offers information on education and training in the field of naturopathy. Find a doctor
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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posted
I have never heard of any hospital in America that does anything but pretend to accommodate people with MCS. Sometimes they'll have a room with an air filter and ask employees not to wear cologne or something, but that doesn't even begin to solve the problem for people like me.
I can't be around anyone -- ever -- who has washed clothes in Tide or other conventional detergent for example, so that pretty much rules out 99.9999 percent of health care providers and the population.
There is a hospital in Boston with a fragrance free policy, and one time when I lived closer to Boston I went there but there was absolutely nothing fragrance or chemical free about the place, and nobody had heard of MCS despite the so-called "policy."
My doctor is fragrance free and does home visits, but he is pretty useless around the heart stuff. He's not really that interested in it. He kind of shrugs and says, "Well, I sure wish you could see a cardiologist" but I haven't had any luck finding a cardiologist to talk with me on the phone or do a home visit, and I have been trying to get one for years.
Being homebound with MCS basically means: no medical care unless you're very, very lucky. I'm lucky I get some medical care.
My doctor does treat MCS, but I haven't found any treatments to be effective. I find it heartening to know that antibiotics have helped some with MCS though!! I really believe MCS is neurological for me, so I am hopeful antibiotics could help.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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CaliforniaLyme
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posted
My MCS went away in the last months of 9 months iof IV Rocephin!! And that was after 1 year of orals. I was very very neuro and progressed quickly.
You want to know something absolutely TERRIBLE?
(I will assume you nodded YES!)
BEFORE I got sick, with the arrogance of the healthy, I did not believe MCS was REAL. I thought it was some silly thing. I thought it was maybe a little allergy people had and made big deals out of.
When I got it, I felt almost as if I deserved it.
It was heck with two l's!!!
ANY hint of cleanser of any kind I would break out into clammy sweat and tremors and shakes and my chornic nausea would turn into retching- it SUCKED!!!!!!!! I would dry heave in the shower.
WHatever arrogance I had, I was paid back for.
The first sign it was going away was that I got near PAINT and did not break out into sweats and shakes and vomiting!!! And just a few months after Rocepihn I myself could PAINT and breathe paint fumes, gas fumes, all sorts of chemicals- DO LAUNDRY with regular detergent- without my body falling apart.
I get so grateful for such simple things sometimes. Opening and closing my hand makes me grateful because I couldn't even do that- my hands were so swollen and crabby and clawed and arthritic- and red and rashy, too- and just being able to do LAUNDRY makes me grateful because we stopped using ANY kind of detergent- just used REALLY HOT water ALONE- when I got so sick- because NO kind of detergent worked- without making me sick-
and now I don't notice it- It's the weirdest thinG!!!
But unlike before, I know now that it is not only real, it can be everything, it can enough to rule your world and make you shake and sweat and retch, at least me, that was what happened with me- and now, 100% GONE!!!!!!!!!!! for over 7 years- Best wishes, Sincerely, 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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posted
Hi Sarah, Thank you for sharing about your recovery from MCS because it gives me hope about the antibiotics.
I had a similar experience to you -- years ago I saw an ad from someone with MCS who was looking for a worker in her house, and I thought the whole thing sounded ridiculous. I had no idea that many years later I would be needing the exact same accommodations she needed then!
I think it's hard for people until they get really sick to understand the surreal reality of illness.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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SunRa
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posted
LymeCFIDSMCS,
I'm so sorry about the severity of your condition. I have MCS as well and understand the complexity it adds to this illness as well as in getting, and tolerating, treatment.
Can you wear a respirator mask while you go to a dr's appt or the hospital? you can attach a HEPA filter and a vapor/chemical filter to filter out VOCs, ammonia, perfumes, etc.
MCS affects everyone so differently so I don't know if that would help enough or not. my reactions are mostly neurotoxic and respiratory and it does help me if I know I'm going to be in a toxic area. If just having your skin exposed to the environment makes you too sick, then it wouldn't help.
Can your own dr arrange for you to be evaluated at a hospital? or in a private cardiologist's office?
There ARE ways to get you medical treatment; unfortunately it just may take a lot of planning and cooperation from doctors.
At a hospital you would need a good respirator mask, your own room, own linens, air purifier, maybe oxygen (?), etc.. and a cooperative staff - which I know isn't easy to find!! but there are hospital guidelines available for dealing with MCS patients...you could bring them with you or have your dr fax them in advance.
Do you have a friend or family member who understands your illness and can act as your patient advocate? That's a huge help and necessary for many since it's hard to demand your needs and "argue" when you feel too sick.
Although I'm not one of them yet, many people have reversed their chemical sensitivities. so hang in there!
I'm sending prayers and healing thoughts your way
[ 20. October 2007, 02:02 AM: Message edited by: SunRa ]
Posts: 1563 | From MA | Registered: Jan 2003
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SunRa
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posted
quote:Originally posted by LymeCFIDSMCS: Does anyone know if babesia, bartonella, Q Fever, etc., cause pericardial symptoms (effusion, tamponade, constriction?) as well as endocarditis? And what would be symptoms common to endocarditis?
yes, infections are common causes of both pericardium and endocardium issues.
I've had pericarditis caused by lyme and/or co-infections.
IV Rocephin really helped my heart. Although it didn't help me long term, at the time it actually reversed some heart issues. (unfortunately they're much worse again now)
the crushing sensations are very scary to experience. I have a lot of empathy for you, you're in a horrible situation. but I do agree with AliG above and hope you can find some way to get this checked out asap.
[ 20. October 2007, 02:03 AM: Message edited by: SunRa ]
Posts: 1563 | From MA | Registered: Jan 2003
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posted
Which co-infections caused your heart symptoms? Did you have a crushing sensation with the pericarditis?
I'm so sorry to hear the heart symptoms got worse again. How long did you do the IV antibiotics?
Posts: 929 | From Massachusetts | Registered: Oct 2007
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SunRa
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It's near impossible to know which infection caused it, but since the Rocephin helped, I'm guessing it was the lyme. I was on it for 4 mos - the improvements were so slight and I was still debilitated, but I'm not exaggerating when I say the treatment was possibly life-saving at the time.
yes, I do remember a pressure/crushing sensation as well as sharp, prickling sensations. It radiated down my left arm. high doses of motrin and antibiotics helped mine. I didn't have any of the serious complications that can come from it (that I know of).
unless there was an error in reading my echocardiograms, Rocephin also REVERSED my mitral valve prolapse for a couple years. It has since come back though.
Posts: 1563 | From MA | Registered: Jan 2003
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posted
I met my new doc for the 1st time a couple of days ago and after she listened to my heart she said that I probably have pericarditis. This was very surprising and new to me because my heart test (stress test) was normal. But this would explain many of my symptoms: -extreme weakness, feel like my legs are going to collapse when I stand (sometimes I even cant stand much, even sitting is hard) -dizziness -chest pain or pressure -palpitations -air hunger, shortness of breath -strange dry cough which I have had for months -maybe even some of the anxiety could be heart-related
I wonder if there is any part of the body that is not affected by this disease...
-------------------- Please dont suggest "ask your LLMD" because we dont have them here in this country... I just have to count on you fellow patients. Posts: 246 | From Finland | Registered: Dec 2006
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posted
I have no doubt the IVs were probably life-saving. I'm so glad you got them in time.
I wonder if it's possible (probably) for Lyme AND a co-infection to simultaneously infect the heart. It seems very plausible since so many of the co-infections are cardio-affinitive.
Would either of you be willing to private message me the name of the doctor(s) who diagnosed you with pericarditis? Maybe one of them would be willing to talk to my doc on the phone.
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