17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
OK, I need your help, your experience, your insight!
My friend who is in yr. 3 of lyme treatment has a 14 year old son who also has lyme. He has been so sick and his LLMD doesn't know what to do anymore. He's been treated since last August and only gotten worse.
He's had a really hard year. Knees and wrists freezing - in wheelchair. Migratory pain, stomach pain that doubles him over, brain fog, and much more. Now it's his heart.
He woke up yesterday morning screaming with pain, "It's a 10, MOM!"!! She took him to a cardiologist he had seen before(the ER thinks she and he are crazy so they didn't bother to go there). Cardiologist ran some tests and put a 24 hour heart monitor on him.
Last month the LLMD said heart pain was from inflamed muscles around the heart. Yesterday, the cardiologist said there were no inflamed muscles. He did see irregular heartbeat on one of the tests he ran.
Today the pain has spread to his shoulder. The cardiologist says nothing is wrong, see the pediatrician.
Have any of you had pain like this? Pain in your heart, thinking you were dying? What was it from? What helped? What do you do if your child thinks he's dying? Over-react? Under-react? Please help...
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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posted
This is just awful. It's helpful that cardio says not cardio issue. Ped and/or llmd should be consulted to rule out any other serious medical conditions that could be causing/contributing.
I have had and witnessed horribly awful, painful panic attacks, believing them to be heart or asthma attacks, at first. After ruling those out, we felt safe to treat them as such, which involves cognitive help (a "helper" holding the person and reassuring that the person is safe) and, maybe fast-acting anti-anxiety meds. My panic has been both emotional/stress related and a physical response to meds/illness, so I address both of those.
I'm sorry the ER treats as "crazy." At this point in time I thought most docs are aware enough to say investigate panic attacks when nothing "medical" is immediately discernable.
Again, I'm not saying this is what is going on, but definitely worth looking into.
Take care.
Posts: 252 | From New York | Registered: Apr 2010
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Stop for him any fizikal activity,give him D-riboze20-30 gr a day MSM,whey protein x 3 times a day,CoQ10 300mg a day, reservatrol, probiotics,and phosfatidylcholine.
Posts: 482 | From Nebraska | Registered: Feb 2010
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
Thank you very much, Greengirl and Maradona!
Lymetoo, yes, they will return the monitor today and get results.
Still open for thoughts.
Thanks everyone!
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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Pocono Lyme
Frequent Contributor (1K+ posts)
Member # 5939
posted
Gallbladder?
That will cause referred pain to the shoulder.
The cardiac, ?lyme and or Babesia. Also, like Lymetoo stated, costochondritis.
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
So sorry for him and his mom. Nice of you to try to help.
It is not unusual for lyme patients to have trigger points. I have them all over. They can cause referred pain. This page mentions the possibility of pain that feels like heart pain actually being caused by trigger points. http://www.triggerpointbook.com/angina.htm
I've had good results with trigger point massage for a myriad of issues. There are massage therapists who have training and know how to do it.
If nothing else turns up with regular testing, I'd certainly consider finding a massage therapist who knows trigger point therapy to see if it helps.
My daughter had a migraine for months. Thousands of dollars in tests and medication to no avail. She was going nuts with the pain until she found a trigger point therapist who relieved her of her migraine in one session.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
I have had the chest pain that spread to my shoulder, this has been recent, about 9 months into treatment. I have been to the ER and the cardiologist. They did a stress test and I am scheduled for an echo next week.
However, they found my potassium to be quite low and after a week of supplementing my K level I have had a major drop off in the pain.
My cardiologist thinks all this could be due to inflammation from the lyme. I am hoping to learn more after my echo.
Definitely something to not take lightly. Hope your friend gets some answers soon.
Posts: 239 | From Virginia | Registered: Jun 2009
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
up
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
To add to the list of possible causes of the chest pain - costochondritis can cause severe pain that mimics heart pain. Lyme can be a cause of this condition.
Sometimes I would get this so bad I could hardly breathe or move my head/neck, shoulder, or any of my upper body.
Sometimes it felt like my heart was being stabbed or crushed. At times the pain would radiate and the surrounding muscles would have the same pain and rigidity.
Acid reflux and GERD, which can be exacerbated or brought on by medications, or by developing food sensitivities, can also cause severe pain in the same area.
Over time the esophagus can become so inflamed or ulcerated that it can effect the nerves of the heart nearby and lead to irregular heart beats.
Has he been on any treatment for co-infections? Has he never seen a single improvement in any symptom? I would ask his mother to start looking into Bartonella treatment, as well as all the other possibilities.
It is also possible he also needs more Lyme treatment, or more effective Lyme meds, and better lifestyle management (toxins, food sensitivities, stresses, sleep, etc.).
posted
Hi...I realized that I forgot to add that shoulder pain was one of my first complaints and that has grown into chest pain, also. This has been labelled costrochondritis for me, too. And, I second, third and fourth trigger point therapy for it and the book in the link, above. I believe it is the Lyme causing this pain. But, I have ruled out other potential causes (gallbladder, heart, lungs...).
Posts: 252 | From New York | Registered: Apr 2010
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
There are subspecies of Bartonella that primarily infect the heart. Enteroviruses, too. Most cardiologists don't think of infection. Maybe run these possibilities past your LLMD.
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
I don't know where your friend and her son are located, but it sounds like he may need another or a better LLMD. Prime example, would be Dr. J in CT (since he isn't an adult). People see him from all over the country and the world.
If he has only gone downhill, he needs a fresh and very experienced eye to treat him.
Lyme & co can cause a LOT of heart problems. Another one no one mentioned is Pericarditis, which can be diagnosed from an echocardiogram. But, if possible, he should see a LL cardiologist (they exist, there's one in NYC and one in Westchester, suburbs of NYC, and one in Long Island, NY).
If he had that, or other heart issues, he may need IV treatment. His mom should be as proactive as possible, before it gets worse or creates more damage.
Posts: 3771 | From around | Registered: Mar 2008
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
In lyme it could be anything.
But a good LLMD should be able to feel for spots of pain if bone cysts, etc.
Epsom salt soaks can help that.
Replace electrolytes to see if that helps if its conduction problem.
I would say its not overreaction for a teen with heart symptoms. Infection in the heart can kill.
But If they can't find anything else--they might try stopping meds and evaluate for a day or two.
It is possibly his meds hitting his esophagus. Some report severe burning pain from some. He may not be eating with some like you are suppose to etc.
Be sure he is on a good probiotic and something to prevent yeast.
One year he should have had improvement. He may be infected with virus' that need addressed or bacteria they haven't hit.
A fresh eye may work.
-------------------- 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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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
Thank you, everyone. You are all so kind and caring to try to help with this. Really, it means a lot.
I've forwarded your input to my friend, and will let you know if she has any questions.
Hopefully she's not getting overwhelmed but is able to use all these ideas to figure out the best direction to go.
She is a very strong woman, a lyme survivor herself. But this whole ordeal is taking her to her breaking point. I do hope she finds the right doctor who will help.
Thanks again! (Of course, I still welcome any input!)
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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posted
I'm so sorry to hear this. I'm sure I would over-react if it was my son. I will be praying they get a solid game-plan together and he sees improvement soon.
I have had my share of heart beat irregularities, palps etc. Went through the cardio testing mill, everything normal other than constant palps which puzzled the cardiologist (clueless about Lyme).
I also have had stabbing, terrible pain right in my heart. It was not anxiety for me (at that point I was sort of resolved to anything happening with my body). I don't know what the cause (though I believe Lyme and co's), it subsided after many months of several episodes. I still get palps and pounding heart, especially when herxing.
Just wanted to share my journey. I hope they can get things under control soon; I'm so sorry Certainly thorough checking to make sure there is no structural or other heart problems is warranted....it's scary and you can't be too careful when it comes to heart symptoms.
TS
Posts: 566 | From West Coast | Registered: May 2008
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Certainly thorough checking to make sure there is no structural or other heart problems is warranted....it's scary and you can't be too careful when it comes to heart symptoms.
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