I never found any ticks on me either, nor did I ever see one around or before the time I got ill. I never got a rash. I was one of the lucky ones because I tested positive for Lyme through Quest and I got treated with 1 mo of doxy by my PCP, which I didn't tolerate, so I switched to amox instead; I was not tested for bartonella at that time but I did recover. I was super healthy and I guess my immune system got strong to deal with barto at the time, FOR A WHILE...
2 years later, I got very ill--neuro symptoms, pain all over body especially in hands and forearms and legs, burning sensations migrating all over my body, etc. This happened after an accident for which I was prescribed steroids (don't ever do this!). Eventually I figured out on my own that the symptoms are due to Lyme, because I was getting sicker and sicker, I could not use my hands and I could barely walk and talk--more like whispering. I tested for Lyme and tested + through quest but I was refused treatment because all docs kept saying is a false + test since I was already treated for lyme 2 years before, and I was "cured". I was negative for Bartonella through Quest at that point and I was never tested prior to this or after this. I was infected with both barto and lyme and i didn't get much better until I started to treat barto with a LLMD, although I never had a + barto test. So, the LLMD started to treat me for lyme, than he saw I wasn't improving much after a few months and started to target both barto and lyme and that is when I saw improvement. I was treated for 1 year with abx. (remember, this is the second time I was treated, after I was told by several doctors I was "cured").
Just because you don't recall a bite, doesn't mean in didn't happen. I don't recall any bites or any ticks. Never had flu like symptoms either. Your symptoms sound more like barto symptoms. Heal/foot pain and pain in hands or rib pain for example are more typical with barto. Joint pain is more specific to lyme. Muscle pain is more specific to barto.
Many docs say mosquitoes carry those diseases too. In that case, how common are mosquito bites? Maybe you should consider how many times you got bit by a mosquito, in the absence of a tick bite? We all get bitten by mosquitoes unless we never go outside the house. Other insects besides mosquitoes were tested for those diseases and some of them were found to be carriers--spiders included but others as well.
"My Primary says I do not have Lyme, but what are the chances of finding ticks on me about
a month prior to having the burning hands thing start (burning feet started 2-3 months later, followed later but moving many other places, though not as severe of a burning feeling, almost like very very warm in some places)"
My son got a rash and he was "treated" in FALL 2013 with 1 mo of doxy. Then a year later, in FALL 2014, he started to have seizures, flu like symptoms, weakness,fatigue and started to have seizures. Remember, he is supposed to be cured with 1 mo of doxy that he got in 2013! He was diagnosed with Epilepsy and all sorts of neuro disorders. I NEVER believed the diagnoses were correct AND I fought to the doctors because they kept insisting he is "cured" from Lyme! He started to have grandmal seizures out of the blue at 10 years of age, along with pain in legs, neck, neuro symptoms, all symptoms of meningitis and encephalitis etc. But the docs kept insisting "its not lyme". "Miraculously", the seizures stopped after he got abx for a sinus infection, precisely amox which also treats lyme and then Cefdinir for an ear infection, which also treats Lyme. And the seizures ended! His pain level decreased and he was 80% better. He has been seizure free since Dec. 2014. He continues to have symptoms but not as severe and not as debilitating. So you be the judge to the last part of your post. You probably missed one of the ticks, right? How can you be sure you found all of them or there weren't other instances when you could get bitten?
What we went through with my son was a nightmare, he stopped breathing a few times in 2014, was put on anti-psychotic meds which made him worse--he could not walk unattended and a lot of bad stuff. I hope you will not give up, and keep searching for answers, and not wait until you get as sick as my son did. What would have come out of my son if I believed all docs that kept telling me :" its not lyme, its psychological"? I knew better because I was sick like him, too, and he couldn't possibly make up so many symptoms, so accurately, when he doesn't know what my symptoms were when I was sick, because he was too little and I NEVER told him how I felt.
Next step for you will be to send you to a psychiatrist. They did that to me, too. They sent my son to a psychologist. They do this to most of us, and PLEASE don't fall for it. They thought he was making it up! How insulting! So even if my son tested negative for lyme, he has it because otherwise, the lyme abx would not have stopped the seizures. He was on anti-psychotic meds for only 2 days, in december 2014, which made him worse and we stopped them after another trip to the ER.
Only a LLMD would know how to deal with all this. The best children hospitals in the country were absolutely clueless. No help! It sounds like you have a nice PCP. Most are not, when it comes to Lyme.
I hope me spending time answering this will convince you to go to get tested through igenex. I am glad I did this with my son and I bet after a few months of treatment, he will recover completely or make significant progress. He is still ill, but considering the mess he was in, he is 80% better already.
Post Edited (Simela1) : 3/31/2015 11:37:45 PM (GMT-6)