What to do if youre unsure you have lyme?

Ive had a lot of problem for almost 3 years. It all started with getting sick in the middle of August 2015 then going to the dr for sinusitis. Fast foward 3 years ive had 3 sinus surgeries, my tonsils out bc they enlarged and caused apnea and my gallbladder removed which was found to have chronic inflammation. Ive had tons of tests and nothing seems to explain why i still suffer chronic headaches dizziness hot flashes knee and wrist pain/sweeling and still get sinus infections. Tons of stomach pain and belching etc and an almost constant pain in my spleen area (front and back left side) Been tested for allergies and celiacs. Scopes down the throat and up the rear too. I had a standard lyme test about a year which was negative but ive read theyre unreliable. So im going to talk to my neurologist whom i see about the headaches to order both elisa and wb lyme tests but im curious,
If the tests come up negative should i pursue antibiotic treatment for lyme? Are there negatives to doing this? Its important to note that the summer this all started i recall at least 2 if not 3 ticks found in the morning while washing my hair.

Post Edited (shadowsfall47) : 7/22/2018 1:09:45 PM (GMT-6)

shadowsfall47 said...
Ive had a lot of problem for almost 3 years. It all started with getting sick in the middle of August 2015 then going to the dr for sinusitis. Fast foward 3 years ive had 3 sinus surgeries, my tonsils out bc they enlarged and caused apnea and my gallbladder removed which was found to have chronic inflammation. Ive had tons of tests and nothing seems to explain why i still suffer chronic headaches dizziness hot flashes knee and wrist pain/sweeling and still get sinus infections. Tons of stomach pain and belching etc and an almost constant pain in my spleen area (front and back left side) Been tested for allergies and celiacs. Scopes down the throat and up the rear too. I had a standard lyme test about a year which was negative but ive read theyre unreliable. So im going to talk to my neurologist whom i see about the headaches to order both elisa and wb lyme tests but im curious,
If the tests come up negative should i pursue antibiotic treatment for lyme? Are there negatives to doing this? Its important to note that the summer this all started i recall at least 2 if not 3 ticks found in the morning while washing my hair.

Hi, welcome!

I think it's good that you are looking into lyme disease. No one has helped you figure this out for 3 years.
Do you have the test results? Was it just and Elisa or IFA screening - no WB? If it was a WB and negative...maybe there were some indications - ie lyme 'specific' bands.

When you get your test results back - you can post your results...and we can help you decipher.
Where are you getting the tests done?

I suggest you test through Igenex Lab. For $250 total, you can get the Lyme WB IgM and IgG.
Takes approximately 3 weeks for the results.

Im told its anxiety by my primary dr... Yeah anxiety is a hugs part of it that started when i started feeling ill! They dont seem to understand that anxiety is a symptom. The headachea are a symptom etc. Why focus on symptoms? Ill request a print out of the lyme test that i had done to see what it was. They just called it "lyme antibodies".

They took a culture during my last sinus operation to check for antibiotic resistant staph and it wasnt that. The general surgeon asked me if i had Been checked for lyme at the follow up appt for my gallbladder. She said that it showed chronic inflammation which is indicative of infection. I told her yes and she left it at that.

It really sounds a lot like what ive dealt with. Ive been to gastro drs, allergist, endo, ENT and neurologists. All i know is im not right. I just wish i could find a lyme literate dr thats closer than a 2 hour drive.

I've always liked this strategy as an indirect way to test for underlying infections. Provocation method, what you do is try some broad-spectrum antimicrobials (can be herbals or pharma), if you get a flare in symptoms it's a very good sign that infections are in play.

Arsolsr, I was misdiagnosed for years and I saw over 20 doctors, they all missed my diagnosis. It's thank to patients on this board that I figured out my health issues, further confirmed via testing. They pointed me in the right direction and I'm eternally grateful for that. I'd still be bedridden if it wasn't for them.

I lost a lot of years of my life due to trusting doctors, and it's thanks to these patients in this forum that I've been able to put my life back together. When it comes to chronic illnesses it's very important for patients to be proactive, do their research, and take control of their health management. It doesn't mean doctors are worthless and you don't listen to them, but when you deal with a chronic condition you need to examine options and various information to make the most informed decisions possible. And yes, this can include talking with other patients, comparing notes, and seeing what they think.

Really my main queation was whats the worst that could happen by taking antibiotics for a couple of months and as sebreg said see if i get a herx reaction. Ive had tons of tests and seen many very smart drs. Ive had no relief. Ive even considered that im a hypochondriac but then i get a ct showing another full blown sinus infection or get my gallbladder removed showing yet again chronic inflammation which tells me its not all in my head. All signs of a hard to detect infection in my opinion and lpts of you guys have said the same. I dont assume i have lyme. I just know i have something going on and im desperate to know what.

shadowsfall47 said...
Really my main queation was whats the worst that could happen by taking antibiotics for a couple of months and as sebreg said see if i get a herx reaction. Ive had tons of tests and seen many very smart drs. Ive had no relief. Ive even considered that im a hypochondriac but then i get a ct showing another full blown sinus infection or get my gallbladder removed showing yet again chronic inflammation which tells me its not all in my head. All signs of a hard to detect infection in my opinion and lpts of you guys have said the same. I dont assume i have lyme. I just know i have something going on and im desperate to know what.

You could take antibiotics and maybe you will get a response in a few weeks ie herx.

But, without a LLMD are you able to get these antibiotics?

So the lyme test i had was ELISA back in october 2017. Came back negative.