Lyme in heart?

[jaco]

Hi. I'm 18 I was diagnosed with PANS/PANDAS after coming home from college with debilitating anxiety, hallucinating, paranoia...the works. Some of the Physical symptomns I've had ( I still hate seperating the two because we know they all originate from an infectious cause) are photosensitivity, joint pain, headaches, eating disorder.

I've had many western blots and an IGeneX lab done. One band came back undetermined. I forget which one...I'll check and post back.

Well the first thing to clear up from the ivigs I get were my joint pain...also the neurological amxiety and ocd symptomns!!! Yay! However one of my nurses caught an irregular heart beat

Went to a cardiologist, he said pvc's. I got a holter monitor and it showed a significant amount that they need arrhythmia doc and stress test to clear me before surgery on Friday.

I had a clear ECG back in November.

Does this mean( if i have it)the Lyme is affecting my heart? Does this sound like Lyme? At the time I'm not seeing an llmd. Just a very prominent pandas doc who does search for lyme. She has not yet heard this info but I'm sure ahe'll be interested. Honestly how do you even ever know if you have Lyme?! Is it a clinical diagnosis like PANS?

I just am so freaked out. I thought I was almost done! I feel loads better!! But now with this heart stuff, I don't know what to think.

So any help would be much appreciated. Thank you so

Much!!!

[JuliaFaith]

Sorry to hear about your experiences, but you are being proactive in your health, which should bring continued healing.

 

Do not know much, but have read that lyme and maybe co-infections wreak havoc on your organs (and, or course, other parts of your body). With that said, my ds14 is seeing a ND and he has been taking all kinds of supplements to support different organs in his body. One of them is for the heart called "Cratoxy (hawthorn berry)". He just takes a teaspoon in the morning. He is on 18 months of treatment and has been taking this probably for the past year.

 

You may want to see a llmd (or ND who specializes in lyme) just for one visit to see what they think. It can be a clinical diagnosis from someone who specializes. Western blots were neg for my son and instead of spending $$ on Igenex testing, just took him to ND. Was the best course for my son since supplements have been expensive. Lyme is sometimes one of many things going on including co-infections.

 

This is a great forum, so more experienced members will definitely have more information for you.

 

Best wishes on your healing and journey.

[Hopeny]

Hi. yes Lyme can cause cardiac symptoms, I believe typically late Lyme causes this problem. From what I understand, the line of treatment for cardiac symptoms is IV antibiotics. Sorry I don't have any links handy but if you google "Lyme heart block" you should find the appropriate links. Burrascano has extensive guidelines for Lyme, ILADS.org also has published guidelines. My recommendation would be to go straight to an LLMD. If you go to flash discussion on lymenet.org and post on seeking a doctor with your city/state, you can get recommendations. If I recall correctly fortunately the cardiac symptoms will reverse with treatment, not so much with some other symptoms. There is a new test for Lyme that can look for Spiorchetes in the blood, there are topics posted on this board. It is expensive but maybe in your situation with negative WB's it is the best option to rule Lyme in or out. Good luck to you!

[sf_mom]

My son had aneurysm at 5 1/2 months old. At the time they diagnosed Kawasaki's and hdIVIG helped him tremendously.... and creased the progression of disease we thought. At about 2 1/2 years old we started to recognize OCD, rage behavior and other health related issues due to older brothers diagnoses of PANDAS/PANS and eventually Lyme et al. He now has a PVC as well. He too was eventually diagnoses with congenital Lyme, Bartonella, Babesia, Coxsackies and other chronic infections/viruses. My understanding is Lyme can pick on certain organs and it can absolutely reside in the heart. Just goggle Heart and Lyme Disease. For some that have not been so fortunate to figure out Lyme there is biopsied heart tissue positive for BB. Coxsackie can also cause heart related issues so we have a double whammy going on here.

 

We are concerned but cautiously optimistic as we are in the care of a very good LLMD that understands the potential heart related issues. At this time, we do NOT believe we will have to resort to IV antibiotics nor IVIG treatments. I too would consider seeing an LLMD and minimally maybe testing for Coxsackies with your PANS Dr. If you haven't tested for co-infections (Bartonella, Babesia, RMSF, etc) you might consider that as well.

Edited June 3, 2012 by SF Mom

[tpotter]

Curious how one would test for this? DS16 has had a huge amount of "cardiac" problems over the years, including sudden tachycardia. 2 different cardiologists both believe it is infection triggered, but can't tell us more. LLMD and PANDAS specialists all know about it.

[Suzan]

Hi, I'm sorry for everything you are going through! I wanted to mention that my daughter who is now 9 has a PVC. They discovered it when she was 5 during one of her surgeries. It developed some time during her 5th year. She was first diagnosed with PANDAS and now lyme. She has congenital lyme we are fairly certain. I am assuming the PVC was caused by lyme but I don't know that for sure. I am hoping it clears up with lyme treatment. She was on lympe protocol antibiotics for 2 years and is now taking natural treatment.

 

Susan

Edited June 4, 2012 by Suzan

[jaco]

I just wanted to update you all that I had a stress test. Pvc's went away when I exercised but then came back as soon I stopped. Technically that's what they wanted and I can get y T and A but now they want a heart MRI since they came back so quickly. I wonder if it could also be since my body is under stress from gettig ivig every three weeks, I mean it is alot to handle and put the body under, constantly putting new antibodies in. Or maybe this is my Lyme denial

 

Thank you all for your input!!!!