Advice Please! Do you think this is Lyme Disease? Negative results. Clear blood work.

Sorry for the long post, I will be going back to a doctor this week and would like some advice on what to discuss with him as well as if you think this could be Lyme disease despite the negative results on two tests.

For several years, I have been tired with some mild joint pain mainly in my knees. Beginning a few months ago, my joint pain has increased to the point of being severe at times and has expanded to my wrists, ankles and fingers. I am generally healthy and in my mid-20's. I have not injured or overexerted my joints to explain the pain.

I am in the woods 5-7 times per week. I find at least 2 deer ticks attached to me per year. I find about 20 on my dog per year. This year I had one attached in June which was completely inflated. When I tried to remove it, it went flat.

A few weeks later I had a moderate fever and joint pain. I had just been in close contact with my dog after he received a live vaccine, so I assumed that the fever was from that exposure.

The next month I was hiking and got stung by some type of black insect. I could not tell if it was a bee or something else because it was completely black and I brushed it off quickly. I had a lot of pain, but minimal swelling and redness until the next day when I had a 12+ inch round splotch on my leg with a huge amount of swelling on my entire leg, redness, hot to the touch, throbbing etc. After about a week, this splotch and pain got worse and I ended up going to the hospital. The doctor said it MAY have been cellulitis but asked me several times if I was positive it was a bee (I was not). The splotch turned from bright red to a crimson purple and took nearly 5 weeks to fade as a whole away. I was taking cephalexin for this for 10 days.

The next month (September now), I came down with another fever. This time it was really bad. I had a fever of 104-105 for 7 days. I had extreme swelling and pain in my throat and terrible joint pain in all of my joints to the point that it was difficult to walk. I couldn't get an appointment anywhere, and I had three cephalexin left over, so I decided to take them (spaced out appropriately) on day 5 of the fever to see if they would help. They did not. The next day I came down with a rash (small bright red unraised dots that covered my arms and legs) and my fever was still at 104.7. I was able to get in to see a nurse and at this point my tongue was also swollen so that I could not speak normally. She tested for Lyme and Strep both which came back negative. I took amoxicillin for 10 days. It helped for fatigue, but the joint pain was still there. After 10 days, the joint pain came back again.

I then went into another doctor's office and he was unsure that the pain was from Lyme disease. He tested for Lyme along with a CBC, Sed Rate, Thyroid function, Liver and Kidney Function etc. All came back normal except for a slight elevation of bilirubin. He prescribed doxycycline just in case for 28 days. I took it, and after about 6 days my joint pain was a little better. The relief lasted for about 5 days and then the joint pain came back while taking the Doxycycline.

The joint pain is mainly while kneeling, going up and down stairs, going up hills or driving (shifting from gas to break). It can be quite severe at times. Sometimes after kneeling or sitting on the floor and getting up, I have very bad pain and numbness in my joints and once I have almost fainted from dizzyness and seeing spots.

Also, I am non-diabetic but have had some issues with blood sugar. Before considering Lyme, I checked my blood sugar at home (back in May). My fasting levels were always between 100-160 and non-fasting 140-263. Now, my fasting is averaging in the low 60's and my non-fasting is almost always under 100. I am not overweight, have very few other signs of diabetes and there were no diet or exercise changes to explain the drop in blood sugar.

I will be going back to the doctor after getting my normal blood work results last week. Is there anything else I should suggest in terms of testing or treatment for the joint pain? I don't understand how everything can come back normal yet I still have fairly significant pain in many of my joints. I generally have a high pain tolerance (I once walked around for three 16-hour days on a broken ankle) but this is really getting to me.

^^ Summed up a lot.

Joint pain was one of my first symptoms back when I was 12 years old - especially in the knees. I now have pain and stiffness in all joints (I'm also about in my mid-20s). The cold and/or damp weather makes it all a lot worse. All of my Lyme tests were negative. I only tested positive for mycoplasma pneumonia. I also have a myriad of other symptoms, but I won't go into too much detail.

Seeing an LLMD is the best thing to rule this out, or to diagnose it. I had doctors treat me like a hypochondriac for years because I had all of these problems, but all tests were always negative. It was not until I came upon a Lyme-friendly family doc that Lyme was even considered.

No one here can tell you whether you have Lyme or not. All we can do is point you in the right direction toward finding out, and supporting you if you are in fact diagnosed with it.

HI Summer and welcome to our forum!!!
I am so sorry to hear of all that you have been going through! The best piece of advice that I can give is to read through the "New to Lyme?" thread at the top of the forum and get to a LLMD, as Acheivinggrace has said! A knowledgeable LLMD can make a good diagnosis of the possible infections that you are dealing with - if s/he feels that you are truly dealing with one or more of them!

Seeing as you are already feeling so poorly, I would suggest that you get in to see a LLMD asap so that you can either have tick-borne infections ruled out or get some treatment started soon!

HI Summer,
We don't usually recommend that our members use an ID doc for treatment. There are always exceptions to the rules, but almost always ID docs can't give the same treatment as a LLMD - their peers won't allow it. Here is a link to an article that appears in 'PubMed' titled "Quality and strength of evidence of the Infectious Diseases Society of America clinical practice guidelines." www.ncbi.nlm.nih.gov/pubmed/20946067

It explains things better than I could!

It's always best to start and stay with a LLMD who follows the ILADS (International Lyme and Associated Diseases Society) guidelines, which can be found here:
www.ilads.org/lyme_disease/treatment_guidelines.html

HI Summer,
Did you check into the suggestion I left in your other thread? Here is a link to it in case you forgot: www.healingwell.com/community/default.aspx?f=30&m=2259401

I also have a few other names if you are interested. Just email me and I can give you their contact info if you need it.