What am I dealing with? Four year post-Lyme treatment flare-up (long post)

Hello all,

This is my first post (as you can see it's more of an essay) and it is a fairly long one so please bear with me. I have an unusual past with Lyme and I need some advice. Also, please let me know if I am in the wrong forum.

My current issue:
As of 10 days ago (March 14th, 2016) I woke up with a swollen pinky knuckle joint on my right hand. It was the night after I finished a pretty intense practice session on my violin so I brushed it off as an injury of overuse, which I still cannot say for sure that it isn't. My knuckle was swollen, red, and warm to the touch. Over the course of the next few days the swelling went down but the pain started to spread into my hand, my wrist, my forearm, eventually into my elbow and my shoulder area (only of my right arm). The pain was not sharp but rather felt similar to the pain you feel upon hitting your funny bone on something. At the peak of my swelling the pain was throbbing and kept me awake at night. A very apparent numbness gradually took over my hand. Both of those symptoms have now subsided and I feel a very dull pain in my joint (which is still an abnormal size compared to before this mishap) and down the side of my hand. I decided to pay my physician a visit about a week after the initial incident to see if there was anything they could do or anyone they could refer me to.

Before I continue...
A bit of relevant background information:
I'm a 20-year-old female who resides in Delaware. Since I play the violin my current issue is holding me back. I am also a college student and I have been going through a lot of stress in the past couple of months (which would potentially be a trigger for me if there is something going on with my joints).

My unusual past with Lyme:
In the summer of 2012 I was diagnosed with mono, later to find that it was a misdiagnosis. I had all the symptoms of the initial infection of Lyme: fever, headache, fatigue, the skin rash erythema migrans (it was not localized but rather found its way all over my body in large red fist-sized rashes). I was bed-ridden for two weeks with pain so bad that I found myself constantly crying tears of agony.

about 6 months later in December of 2012 I was admitted to the ER for a localized cyst-like lump in my right knee that burst and left my right leg swollen to the point that I could barely walk. This lump was later assumed to be a collection of the bacteria Borrelia burgdorferi, which causes Lyme. After getting testing done for a week or so the hospital tested for Lyme and it came out positive. They placed a PICC line in my arm and I did intravenous antibiotic treatment for a month. The doctor made me aware that the problem area, specifically my right knee, would be prone to having more problems in the future and since I apparently went so long without being diagnosed that I would be at a higher risk of developing issues with arthritis (specifically rheumatoid). My case was a rather rare one that the hospital had only dealt with once before.

After being treated I went on about my daily life like normal. A couple years after the treatment I started to notice the classic ‘arthritis weatherman pains’ but they would usually take place in one knee or hip and subside rather quickly within a couple hours. In the past few months I have realized that these ‘weatherman pains’ seem to be less localized, affecting several places at once such as knees, hips, elbows, and toes. The pains also seem to linger for longer than they used to. I have continued practicing violin out of a refusal to let these symptoms stop me from doing what I love.

A couple things to mention:
-The stiffness in my joints (in general) has gradually, slowly become worse in the past couple years. The incident with my right hand was a fairly sudden occurrence.
-I battle with fatigue often but since I am usually stressed out and sleep-deprived (AKA normal college student) I always lay it off to normal tiredness.
-I have noticed over several years, even before being diagnosed with Lyme, that small red pin-point-like dots seem to occasionally pop up on my face and my hands (mostly my right hand) and they do not subside. Unlike a red freckle, these markings are underneath of my skin. I am not sure if this is related to Lyme but I find it important to include as one of my symptoms.
-Another symptom I would like to mention is my foot problems. More recently I have noticed two nodes on the back of each of my heels have appeared, similar to those of a Haglund’s deformity. At first they were very painful but now they do not hurt (yet remain in place). Again, I am not sure that this is related but foot problems do seem to be prominent in patients dealing with arthritis.
-A few weeks ago my dad was diagnosed with gout, which is a type of arthritis associated with the build-up of uric acid in joints. I know that certain genes can make you less able to prevent the development of gout. Seeing as I am fairly young I did not point to this as an immediate factor but rather am including it as a precaution.

Here’s the problem: all testing came back normal and the x-ray did not show a fracture of any sort.

After doing some extensive research on my symptoms and my past with Lyme I was almost certain that the tests would show up positive for some sort of a rheumatoid factor or C-reactive protein. In fact, it’s sad to say that I would have preferred a positive test so that I would have some sort of direction.

If you’ve gotten to this point, thank you for reading. I truly appreciate it.

Seeing as I'm pretty young to be dealing with Rheumatoid arthritis it has been difficult to get anyone to take me seriously. Although I am still tempted to brush this off as a normal overuse injury, I am afraid that if I do so the symptoms could potentially get worse over time and cause major damage to the joints that are vital to me for playing the violin. I am now thinking about attempting to contact a Rheumatologist or a LLMD but I am unsure of how conclusive it will be as my test results did come out negative.

If you have any idea on how to guide me to the next step or would like to comment or add some insight please do so. Each perspective contributed will help me piece these symptoms together as a whole.

Some general questions:
What might I be dealing with?
What kind of doctor should I be considering?
What can I temporarily do to help promote the healing of my knuckle joint without having to stop practicing?

Oh my gosh I am a musician and I know your fear of not being able to play. My first gut reaction is ice it. It will not hurt it no matter what it is. Most lyme pain will migrate so that may be a blessing in that it goes somewhere else rather than that very important pinky.

You were only on antibiotics for a month in 2012? I do not think that 1 month on antibiotics was enough. How has your health been since then?

If it were me, and I am not any type of an authority! I would seek out a lyme literate medical doctor (LLMD). This will be a doctor that can run both a lyme test (using Igenex) and can do a test for Rheumatoid arthritis if you want another opinion.

I think a Rheumy will only be looking for rheumy. A LLMD will consider everything.

Good luck and I hope you get more responses. Please stay in touch.

~Annette

What state is close to you besides your state of Delaware?

I will definitely start detoxing, thank you!!

PeteZa, surrounding states includes Pennsylvania, Maryland, and New Jersey