Lyme Diagnosis for Dysautonomia-like Symptoms

[CDNPortGrl]

Hello everyone,

I joined this community a short while ago as I was told in the ER that I had POTS and many issues I was contending with, were identical to what anyone with Dysautonomia is dealing with. After further exams with the cardiologist, he ruled that I do not have POTS. However, I still was contending with the fatigue, headaches, weakness, etc. 

It turns out I have Lyme disease. I'm only posting this because my doctor refused to test me for this then when I did have the test, it came back negative. I would like to suggest that patients get the California or Germany lyme disease test to rule that out. It causes Tachycardia and will cause 'flare ups' throughout your life if not treated. The flare ups are identical to what people with Dysautonomia describe. 

I wanted to share my experience in the event that some of you were left to just 'manage' and your doctor was uncertain. 

Lyme can also co-exist with other ailments so IMO it's wise to investigate regardless. IMO there's been a huge surge in ticks in the past number of years where I live so it seems to be a growing issue that doctors are oblivious about. 

Best of luck!

[Guest KiminOrlando]

Lyme Disease can have similar symptoms as auto-immune disease. I'm glad you found answers and I hope the treatment works for you.

[MTRJ75]

Glad you caught it. Lyme could be a cause for Dysautonomia, as in, you might have POTS caused by Lyme. If that's the case, it's probably good news that you've been able to find and treat the underlying cause. I'd add that you're lucky they diagnosed POTS as the cause for your trip to the ER rather than anxiety. The one thing I have learned about Lyme though is that some of the coinfections are quite common and I've run across some alternative/functional practitioners that tell almost everyone they have Lyme, It may not be a bad idea to attack those coinfections anyway, but in my case, it wasn't really the answer. 

[Pistol]

@CDNPortGrl - Lyme's disease is no laughing matter, but I am relieved to know you don't have POTS! I know Lyme's disease can mimic POTS, based on symptoms of tachycardia, fatigue, joint pains etc. And in many people once the Lyme's disease is properly treated ( assuming your body responds to the treatment ) these symptoms may improve. However - Lyme's disease is an infection that can trigger dysautonomia - so not in all people do the symptoms disappear with treatment of the infection. I know both people that recuperated fully from Lym'es as well as people that ended up with Dysautonomia triggered by Lyme's. But I agree - Lyme's disease should always be tested for when evaluating the causes for POTS-like symptoms.

[CDNPortGrl]

Oh dear, I’m sorry to hear that regarding Dysautonomia. I was hoping that wouldn’t be the case. In my circumstance, the symptoms I had previously were replaced by MCAS and everything else that Bartonella graces one’s body with. I seriously hope the POTS type symptoms don’t return. I was under the assumption that when treating Lyme, you can effectively treat the dysautonomia as it’s the underlying cause for some perhaps. I remain hopeful that for many this may be the case 🙂. I haven’t started treatment yet because it has to be done naturally since antibiotics wreak havoc on MCAS. So who knows what will emerge along the way.

Best wishes to all of you in your quest for comfort and better health!! 🥰

[CallieAndToby]

8 hours ago, CDNPortGrl said:

Oh dear, I’m sorry to hear that regarding Dysautonomia. I was hoping that wouldn’t be the case. In my circumstance, the symptoms I had previously were replaced by MCAS and everything else that Bartonella graces one’s body with. I seriously hope the POTS type symptoms don’t return. I was under the assumption that when treating Lyme, you can effectively treat the dysautonomia as it’s the underlying cause for some perhaps. I remain hopeful that for many this may be the case 🙂. I haven’t started treatment yet because it has to be done naturally since antibiotics wreak havoc on MCAS. So who knows what will emerge along the way.

Best wishes to all of you in your quest for comfort and better health!! 🥰

My grandfather got a weird tick bite after a hurricane hit us and trees went down everywhere and he was outside using chainsaws and tractor to clean up, he'd been in the woods his entire life but said this tick bite was way different because it was extremely painful and the tick seemed nearly embedded. Anyhow I saw him a week later and he had a massive rash, not a bull's eye rash but a disgusting rash and we took him to urgent care and they tried to say it was shingles my grandfather said, "Do ticks cause shingles? No. Well it's not shingles. A tick caused this." With the testing it showed positive rocky mountain spotted fever and he had to go on antibiotics for about a month which worked thankfully because he was sick and I was scared of any long term chronic affects. I know chronic lyme is different but that's just a weird story with my grandfather. Good luck. And smart of you to see a cardiologist to check on the POTS. 

[CDNPortGrl]

Amazing story @CallieAndToby22! Wow, it’s great news that he saw the bite and took action. He certainly averted a lifetime of many unfortunate health issues.

It turns out I will be also using antibiotics so fingers crossed, it goes well!

[CallieAndToby]

12 hours ago, CDNPortGrl said:

Amazing story @CallieAndToby22! Wow, it’s great news that he saw the bite and took action. He certainly averted a lifetime of many unfortunate health issues.

It turns out I will be also using antibiotics so fingers crossed, it goes well!

Be careful about cdiff. I've been on long term antibiotics and several times got cdiff even with flagyl on board. So whatever measures you can take like probiotics, etc. And just discuss it with your doctor. I just like to warn anyone doing this long term. Yes my grandfather is lucky but he said it was only because the bite was so unique to all the others and he couldn't hardly get the tick off.