Lyme Disease Support Group

Ok heres the deal, I have been through Dr after Dr and after misdiagnosis after misdiagnosis, I finally had my Primary Dr say that I had Lyme due to Western Blot. He then referred me to ID and the ID was very skeptical that I had it at all.(which pissed me off since I felt like I finally had an answer to symptoms I had been having for years) So he ran tests again, and I am currently waiting to hear results on Tues. The problems that I am currently having is that one of my symptoms is dizziness in which, I was given a tilt table test, and passed out within 8 minutes of the test. I was told that it was too soon to connect to LYME. In my mind, I already know that it was the LYME, as I have NEVER had any major health issues before this. Now after feeling as if ID was illiterate, I talked to quite a few on here and made an appt with Dr. C in southern md. Now I am waiting for my appt with him on JUNE 9th which seems like an eternity away. Meanwhile I have been having chest pains recently here and there, and I am quite concerned as I know that LYME can effect the heart. I was placed on thirty days of doxycycline, which did absolutely nothing. This is currently day 2 without any abx. My question is is there anything that you all know that I can do to help my situation, as I do feel bad enough to question my health status right now. Do you think it would be better to go to like an express care office and tell them my story, or just go straight to a hospital? please suggest which one in so maryland. I guess what I am trying to do is get some better abx as doxy did nothing and I am not a doctor, however I know my body, and feel that I need the IV or something stronger than doxy. I really do not know what to do all advise would be great. Please let me know if anyone else had been through this waiting game and had more symptoms pop up.

thanks

Hi Jimmie, Welcome aboard!!

We have all been from doctor to doctor and misdiagnosed more times than we want to talk about. Like myself, I have been sick my whole life basically. I have had knots in all my muscles and lymph nodes. I've been told for years that I have an infection in my body, but none of the doctors ran tests to find out what kind of infection. Not until I went to my current LLMD was I diagnosed.

I also have chest pains and irregular heartbeats at times. If the chest pains are getting worse you should definately go to either the express care office or the hospital. Just to make sure what is going on with your heart.

They may be able to put you on a different antibiotic while you are waiting to see the doctor next month.

I have had more symptoms pop up. My central nervous system flipped out in Dec. when my brother killed himself due to suffering from lyme disease. Since then, my eyes have went from perfect vision to needing biofocals. Headaches have gotten worse as have the jerking and twitching throughout my body. My brain is so foggy that I can't even concentrate to do normal daily activities.

It is better to go to the hospital, than to risk you life. It is possibly the lyme doing this and they will tell you everything is fine. That is what they told me last time I was in the ER for chest pains. I couldn't even hold my head up and was sent home with antibiotics for a UTI, which I didn't have but I took the antibiotics anyway to help fight the infections in my body.

Good luck....

Jimmy...

Know that you certainly are not in this boat alone...

Now it is always best to have anything chest - possibly heart related checked out...

Yes Lyme can affect the heart...and sometimes it can be less serious issues...that just hurt really bad...

Chest pains can be a range of things - from a symptom of Babesia, to lyme induced costochrondritis, to mild heart issues - to major ones...

So if you are concerned and feeling that bad - go to the ER or a Emgcy Clinic. You may get lucky...

What I mean by that is, some Er's will infact address the issue - but others wont. Same with a clinic...but I wouldnt walk in professing - "I have Lyme Disease..." sit on that - until they have no answers...then say "I have Lyme disease, and my research has told me that Lyme can cause these problems..."

And from there you can feel out how to continue the conversation - if possible to get them to prescribe something...

And dont be afraid to bend the truth a little. If they mention Doxy - say you have had adverse reactions to it...if there is an abx that you have taken in the past that you felt well on - let them know that too...

Amoxicillin is probably one that they would be comfortable prescribing. I doubt that they would be comfortable prescribing stronger abx like Zithro, biaxin or some of the others...

You have to learn to read them - and feel them out...

I hope this can help

Christine

ok thank you both cmany, and acajunbabe4u

Jimmie...you are very welcome!!

Hope you feel better soon!!

I have heart problems too. While waiting months for an appointment, my psychiatrist prescribed clonodine for the chest pains. I guess it reduces your blood pressure. I only took it when I had chest pains, not all of the time. Perhaps your pcp would consider doing this while you wait for the LLMD.

I know my heart Dr. told me that a lot of lyme patients have to have a pace maker put in. I never had to thank you god. I see my Heart Dr. every 3 months since having lyme and its been two years.

cool thank you and Julie4848 for the replies

No problem...

I just had the 48 heart monitor on and an echo of the heart done...All AOK..But I do have very high Colosteroel (however you spell it)...LOL But that also runs in our family. I also have other health issue going on not just lyme...After 40 its patch, patch, patch...LOL

yea on weds I got my heart monitor results back and they were perfectly normal, I am having an echo done next and if all is ok the heart specialist said that he will let me go from under his care, as he says that it is nothing from his perspective going on with my heart. patch patch patch after 40 lol..