Could I have Lyme? Where to start?

I'm not sure if I have lyme but I have some unexplained health issues.

I was healthy up to the point of getting married in Aug 2012. I've never gotten bit by a tick by my husband has gotten bit by several as a kid (we are late 30's now). He hasn't shown any symptoms of lyme though. about a month after getting married, I had UTI symptoms but no bacteria. After a few courses of abx symptoms disappeared. I also happened to get pregnant at that time. I had a rough pregnancy but chalked everything up to pregnancy symptoms.

The baby was born June 2013. Later that year I started having random episodes of a feeling that is really difficult to explain. It was kind of like feeling flushed and hot in my head and arms and legs. It was almost like I could feel hot blood rushing through my body just under my skin. It would last maybe 30 seconds. This only happened maybe 15 times over several months.

At the end of April 2014 my bladder started acting up again but this time much much worse. I was on a few different abx and even got a kidney infection at one point. I was diagnosed with interstitial cystitis (bladder pain syndrome). It slowly got better over a period of several months but my urine is still really cloudy and I see mucous as well. I occasionally have light symptoms.

Summer of 2014 I started getting joint pain on and off.

In January 2015 we moved into a new house. We needed more space (total of 7 kids between us). The house backs up to a wooded area. I started having joint pain in my knees due to going up and down stairs now in a 2 story house.

A few other things happened. My husband pulled a tick off his stomach around Jan/Feb. In March we found a ton of mold in the HVAC vents. And in March we got a new memory foam mattress. I'm mentioning these things in case they are relevant (toxins in the environment). The day after we got the mattress (and also being intimate with my husband) I woke up with a major case of vertigo (BPPV). Three days after that my right knee started hurting really bad, a deep pain that I've never felt before. It was cracking and popping when I bent and straightened it. A few days later I noticed it was swollen and over the next few days some fluid accumulated to the point that my range of motion is pretty limited. Once the swelling started it isn't really painful, just uncomfortable. It's also a little hot to the touch.

I used the epley maneuver several times over the course of the next few months and for the most part the vertigo is gone. I still get light popping noises in one ear and sometimes my head feels kind of funny when I turn a certain way. My knee is still full of fluid. I went to 2 ortho doctors and had a couple of cortisone shots and they drained some fluid. I even had an exploratory surgery. The surgery showed nothing but a red inflamed synovium. After the surgery the swelling/fluid wasn't too bad but at my follow up appt the dr stressed bending it as far as possible....and the fluid came right back the next day. They didn't know what else to do so referred me to a rheumatologist (which I'm still waiting for a phone call to set up the appt). I should note that I tested negative on the RF and ANA tests.

Also I notice heart palpitations but I'm not sure if that's anxiety related (due to not getting answers). Sometimes my heart rate is faster than normal as well (it used to be 60-70 but now it's 70-80).

I really don't know where to start. I was thinking of going to my regular dr and asking for a lyme test but feel like I'm going to get blown off. And also I don't know how reliable the test would be. I don't feel like my symptoms are intense enough to see an LLMD and I'll feel kind of stupid since my issues are minor in comparison to others. And since I wasn't directly bitten by a tick and never had a bullseye rash and I don't "know" if it's lyme. I've already had test after test after test run by several doctors. I just want to get better though!!!

Hi Eastcoastgirl!
Welcome to our community!! I'm so glad you found us.

Girlie has given you some great information, let's see if I can add to it a bit.

I agree - those symptoms are far from minor - they all add up to being very suspicious for Lyme. Especially after the stress that's been in your life - your body doesn't care if it's happy stress or sad stress - it's all the same to our bodies. Stress lowers the immune system and allows things like infections to spread further throughout the body - especially when we are talking about these infections.

Lyme is known to be found in a certain amount of sperm - so you could have been infected on your own, or through your husband (sorry!!!). And, so so sorry to say this, but if you have Lyme, it's possible your child may need treatments as well. The Lyme bacteria can be passed between mother and unborn child, and can be present in breast milk. It's best that you know this possibility up front rather than being surprised by it later, or worse yet, your child growing up with ever increasing issues due to having these infections and no one knew.

One of the many things that we have learned is that there is no "minor" case of Lyme. It's like being only slightly pregnant - it just doesn't happen. If you have Lyme or one of the other infections, the longer you wait, the worse your symptoms get and the harder it will be to treat - so earlier treatment is much, much better!!!

If you haven't ​yet​, it would be helpful for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of important information, symptom lists, helpful links and pdf's, how to detox when one has these infections, information on probiotics and much more.​


For information on finding a​n ILADS ​(International Lyme and Associated Diseases Society)​ trained​ Lyme Literate Medical Doctor(LLMD) in your area, you will need to enable your email option in your profile in order to receive any recommendations, as we don't allow doctor's names and contact info to be posted on the forum for several reasons. You can enable your email option in your profile, under 'edit profile'. Be sure to click the submit button to actually save your preference.


​You can send me an email by clicking on my screen name or the small blue envelope under my screen name. I may have contact information for some LLMD's in your area as well.​ ​Please include your state and area that you would like to find a LLMD in and I will see how close I can get to your location.​


You can start a new thread titled something like "Looking for LLMD in the (insert the nearest larger city & state) area". Members can email you about the LLMD's that they see in that area if you have your email enabled. We don't allow doctors names to be posted though.


You can also email the Tick-Borne Disease Alliance at​[​​url]​[email protected]​ for LLMD referrals and you can go to ​tbdalliance.org​​ to learn more about these infections.


You can also go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:
www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74​​


​ You will want to find an ILADS (International Lyme And Associated Diseases Society) trained doctor, as ID Docs (Infectious Disease Doctors) believe Lyme is hard to catch and easy to treat, and don't believe in the reality of chronic Lyme. Go to the ILADS site to read the new (2014) Treatment guidelines to get you started on your healing journey:
http://www.ilads.org/lyme/treatment-guideline.php

We do our best to be helpful!! LOL!!!

Don't forget you can send me an email too if you aren't feeling hopeful about your choices. I do have a few listings of LL docs in NC.