First post- I think I may have lyme...seeing a cardiologist tomorrow

I am normally a busy active person and love getting up very early every morning. I also love running though I haven't been able to do it for quite some time now. It all started many months ago. I woke up in the middle of the night feeling like something was seriously wrong. My heart was racing, I struggled to maintain consciousness, I had this sensation like someone poured bengay all over my chest and the icy hot sensation spread across my chest and all throughout my body. It lasted for a long time: maybe 50 minutes to an hour. Then it was over and I thought it was some freak thing.

Then it happened again about a month later. And again. And again. And over the past several months I've been getting aches and pains in my hip, my knee, my ankle, my fingers. I thought I was overdoing it and stressing out my joints by running so I stopped. But the pains didn't go away. They aren't horrible. Most days they are fine but what is not fine is how tired and just "sick" I feel a lot of the time. And the heart palpitations and tingling that spreads throughout my body is horrible. One day it was so bad I ended up calling the ER from my desk at work literally thinking I was dying. It was mortifying. The EMT asked if I had anxiety. I do, I have had anxiety my whole life but this visceral, horrifying sensation is not it. My heart rate was high but my EKG at the hospital was normal and tests showed I didn't have a heart attack or blood clots. I followed up with my GP that week; she agreed this was definitely not anxiety and referred me to a cardiologist who I will see tomorrow morning.

In the meantime I've been desperate to figure out what is wrong with me because I hate feeling like this. I have trouble concentrating and just feel unwell. My boyfriend reminded me of a photo I took of a "bug" bite I had last July that at the time he thought looked suspicious as a bullseye rash. I disagreed and thought he was being ridiculous. Now I'm not so sure. From what I've read of other's symptoms of lyme I think they sound much like what I've been experiencing. Nothing else seems to fit. I also remember I had found a tick on my chest this past spring that I saved for a couple weeks. Nothing happened in two weeks so I pitched it. I do do a lot of walking in parks/ trails with my dogs (in Ohio) and went horseback riding in the Smokey Mountains last fall so I do think lyme may be a possibility.

Does my story sound familiar to any of you? Any tips for dealing with doctors to solve this mystery?

Hi rdeirigo, welcome to our community!

I'm sorry for what you're experiencing - but I am glad you found your way here. We can help you!

The symptoms you describe could be attributed to lyme disease (and coinfections). That - along with the suspicious bite and rash...it is highly likely.
Was the tick you found on your body attached?

Two suggestions:

1) You could have an Igenex Lyme western blot Igm and Igg done for $210. Do you have a Dr. who would be willing to sign the lab req?

2) You could go ahead and schedule an appointment with a Lyme Literate Dr. (LLMD) - they are the 'specialists' when it comes to tick-borne diseases. Most 'regular' Dr.'s aren't knowledgeable enough to diagnose and treat lyme disease.

It often takes several weeks or months to get into a LLMD...so you could do the Igenex test (3 weeks for results) while you wait.

Here is the website - you call them and order the test.

www.igenex.com

We encourage all new members to take a look through the "New to Lyme?..Start Here!" thread (top of page 1)
Lots of information there.

We can also help you find a LLMD - just start a new thread - titled: "Looking for LLMD in/near_____" and fill in the blank with the nearest larger city/state.

Welcome to this community. Your symptoms would, in my view, be a match for lyme. Good job finding this place.

This is a GREAT collated bit of info to begin considering this further.
www.healingwell.com/community/default.aspx?f=30&m=1606610

This screening tool, developed by a Dr. who has treated thousands of patients convinced me to pursue a probable lyme and co-infections scenario. It was then clinically diagnosed by a CMD/WD and a naturopath.
www.healingwell.com/community/default.aspx?f=30&m=1606610 If you score over 45, then he suggests discussing the results with your Doctor.

If you DON'T have a Dr. who will sign a form for IGEN-X, there is a firm you can order through that I used, best investment I made! I used True Health Labs.

If you are on a tight budget, and can't afford a lyme literate Dr. (initial consults start at $600 on up into the thousands with not all covered by insurance) it is possible to figure it out with an herbal approach, if your body responds well.

ONE: nutrition - NO SUGAR, NO ALCOHOL, NO processed foods, many benefit also from no caffeine, no dairy, no gluten. IF it is a bacterial infection you want to create an environment they don't like. I began with a loose paleo diet, then began to do an anti-inflammatory diet, and then, tried GAPS for a bit.

TWO: herbs - Stephen Buhner, love his approach. An infamous moderator Traveler uses chronic tonic.
Free Buhner info here: I eventually bought his books.
buhnerhealinglyme.com/the-protocols/

THREE: If it is lyme and co-infections, detoxing will become a familiar term as will "herx" reactions.
www.tiredoflyme.com/detox-methods.html

P.s. don't waste your time with an infectious disease dr., in my view. They stand on the side of uninformed and mis-information when it comes to this concept of "lyme wars." Others warned me, had to experience it before I was convinced of it.
www.chelseagreen.com/blogs/welcome-lyme-wars/
and once again! Welcome!

Post Edited (multifacetedme) : 12/1/2016 12:20:41 PM (GMT-7)

Unless you are east coast regular doc are no use ...i had tachycadia ,right bundle branch block enlarged heart and cardio offered ibuprofen. ..i saw 33 docs and it was nurse who had lyme at a fuctuonal doc that finalky told me ...

i highly recommend the dna connexions test ..it test for actual prescence of mocrobes rather than just the immune response ...its 2x as much as igenix but it tests for coinfections ...lyme never travels alone ...it has many bad boys with it ...brucella is nasty ..bart too..babesia is no joke ...

read the neil spector story ..watch under our skin ..get 2nd mortgage and find a lyme doc ..if he codes it right with pdn or other dx they may cover some stuff...its all out of pocket ..its all taboo its all expermmental ..consider bvt rife and all other modalities ...welcome sorry glad you found us

Post Edited (bluelyme) : 12/1/2016 7:21:31 PM (GMT-7)

Hi Rdelrigo,
Welcome to our community! I'm so glad you found us!

You have been given a great deal of very good information so far! For treatment, you will need to find a doctor that is already knowledgeable in treating these infections (training a doctor while you are in treatment is incredibly difficult and can delay healing) - so we can help you find one - just let us know when.

You can also post your picture on here, although you will have to use a 3rd party photo hosting site like tiny pic or photobucket or others and get a "sharing" link to post on here. We are used to looking at insect bites and trying to help identify if it's a bull's eye rash or not. LOL!

Please do update us on your appt. today! You can vent here if you need to (we understand!) and we are here to help you learn and heal.

Thank you for posting an update.

Would this diagnosis of gastritis and hiatal hernia explain your other symptoms of knee, hip, fingers, ankle pain, along with racing heart and tingling throughout your body?

I am curious as to what the biopsy will say. I sure hope you come back and let us know.

Glad you have some answers. That has to feel better than "its in your head."

They are just practicing medicine.