Update: My New Journey -Lyme Disease

Hello friends!
I have been lurking around in the shadows, trying to figure out whats wrong with me…its been a yr now! I thought long and hard about everything and it dawned on me that of the 15 stupid doctors I saw, none of them really ever ran blood work or asked alot of questions about my history. I thought about what MAV Lisa said about lyme. I did a lot of research and when I saw that lyme can be transmitted by fleas, I almost died. Two years ago, my cat came home with the worst case of fleas and ticks. They bit the shit out of me! Fleas everywhere for days! All over the house, in the bed, in the carpet, everywhere…and baby ticks. Now I didnt think at the time to go to the doctor. All I wanted to do was get rid of them! It took weeks. Meanwhile, Nj is one of the states highly affected by lyme!!
About 4 to 6 months later, I began getting eye floaters…then I began to notice I was rocking while lying down…next came the IBS symptoms. Then one day out of the blue, I got flu like symptoms! And bam that was it! Ive been sick ever since. I never thought it could be lyme until now.
The meds I take for MAV dont work well enough and ive never had a headache or dizziness prior to the fleas and ticks. I feel as though we all should get tested!!! U can get lyme from fleas, sand flies ticks and lice.
I am now on a journey to be tested and start treatment.


Hi there,

Sorry to hear about the lyme- do you have a good primary care dr. who can help guide you about who to see about this? Are you still on topamax- I thought was that helping you? Did it stop working altogether? It sounds like the mav may just be a part of the puzzle? Do you remember being bit or seeing the bulls eye rash? Good luck to you and I hope you are guided to a good dr. who can help you and who will run blood tests!!!

Hi Sarah,
Yes i had a rash. Unfort i didnt think much of it. I get rashes all of the time now too as well. Which is a symptom of the the lyme. I always wondered why this was happening to me all of the sudden. I was tested for everything else under the sun by my primary EXCEPT Lyme. Shes like oh how could miss that? Anyways the elisa test is the standard test and it sucks. It misses 80% of people infected. Horrible right? So I will be getting tested by Ingenx lab. I am seeing a LLmd who specializes and treats lyme. Topamax does help, I suppose. But its not helping enough. I am still working but its hard. Some days are so bad…so very
. But I have to work for my son, for my insurance. I have to work and hang in there especially if ive come this far to my diagnosis.
Soon enough…
Hope u r well Sarah! :slight_smile:


Hi BB,

Thanks for updating us. Definitely interested in how this goes for you and if the treatment makes an impact.

I’m moving this thread over to the Other Illnesses forum where all of the Lyme threads are. I’ll add this thread into the Announcements section. Please let us know how you continue to progress.

Cheers :slight_smile:

I am so thankful that you read my story, and looked into Lyme. Please don’t hesitate to message me anytime. I wish you all the very best.


Thanks Scott. Thank you Lisa …you opened my eyes to this…it makes a lot of complete sense. Once I did the research I was so shocked over some things. I have a very open mind and am willing to do what it takes to get better. If it so happens i dont have lyme, then so be it…but this is def something everyone who has no history of migraine & dizzines or illness should look into! Ill keep u posted.
Have u started ur abx Lisa?

mavlisa how is it going? how long have u been on antibiotics for and how is it going? can u tell us what u are taking?

Sarah - copied below in case didn’t find it.

“I haven’t been steady with treatment for 4 months. Was spending much of that time waiting to be seen by a particular Lyme doctor who has likely treated the most cases of Lyme through the years. I have been with him for 1+ month, and am treating Lyme, Babesia, and Bartonella, with combo of antibiotics and anti-malarials. It is actually the coinfections that have likely knocked me down the most. Will keep you posted throughout my journey.”

cool thanks Lisa keep us posted on how it goes!!!

Beautifully Broken continues to take 50 mg of Topamax and a benzodiazepene and we hope she will return to the wellness she experienced on these meds soon if she hasn’t already achieved it.