Posted 10/2/2011 4:34 PM (GMT 0)
hi everyone,
so the past month has been a pretty crazy month for me with this illness and lifestyle change- ive seen 2 LLMDs, an Infectious Disease Doc and on top of all this started my senior year at the university. Both LLMDs diagnosed me clinically with Lyme Disease. They said no other illness could cause the complex widespread symptoms I have. I am currently waiting on a Basic Lyme Panel results from IGenex. I also just recently sent some blood to Frys Lab in Arizona for a bartonella smear and CD57? The second LLMD said my neuro symptoms sound more like bart. anyways, i started 250mg of biaxin twice a day on sept 9. i felt pretty awful for a couple days with peripheral neuro symptoms- trouble swallowing, head sensations, tingling, occasional spacey/dizziness and vision irregularities. but i had no increased fever, chills, or what i would consider normal herx symptoms? but then i almost seemed to have some pretty good times of the day as well.
and then i got a bad cold and felt absolutely awful!! im still fighting off the last bit of the cold but ive had some symptoms that i dont know what to make of- are they a herx, cold symptoms, worsening of symptoms of my illness? my ears have started ringing at night before bedtime and my left ear feels completely stuffed up and my hearing is worse in that ear. the sensation of my head around the left ear seems to be different too. i know biaxin can be ototoxic (cause ear problems) but has anyone experienced this? i thought it was from my cold.... but now im thinking not so much. ive had it for about a week. also, ive had weird sensations in the left side of my brain that cause crawling sensations on my cheeks. my neck creaks a lot more after starting antibiotics and ive had pain in my abdomen. im not sure if the nausea and pain is a side effect of the biaxin or what, but im pretty sensitive to drugs.
my second LLMD that i saw wednesday wants to prescribe a more intense treatment plan- 1000mg of biaxin a day, trindinax and omnicef. i have yet to start the trindinax and omnicef becuase i want to figure out about whether or not the ear problems are related to the biaxin, and if i need to change. ive also started other supplements- vit D, magnesium, digestive enzyme, probiotics, co q10, and b12 injections. could all of this be overwhelming to my system?? especially given i have a very low BMI and am sensitive to drugs to begin with? this doctor also wants me to have a lot more blood tested- the only problem is these tests would likely have to be paid for by myself bc insurance doesnt cover out of network. some of these blood tests are:ASO, Candida, ceruplasmin, CMP, Immunoglobulins, mycoplasma, Q Fever, Rickettsia, Rocky MT SPOT Fever, toxoplasm.... i have no idea what these are and if they are overkill? are all necessary to be tested for? and can one get Q Fever, Rickettsia, Rocky MT SPOT Fever in Wisconsin?? My parents have already spent a lot out of pocket for IGeneX and the labs in Arizona and i dont know when to say enoughs enough.
thursday, the day after seeing my second llmd, i had my appointemnt with an Infectious Disease Doctor covered by insurance. i figured i might as well go and get another opinion/insight. He does not believe it is lyme disease, as to be expected. however, he seemed very intelligent and answered a lot of questions i tossed at him during the appointment. and he did believe me that something is going on, he just thinks its something else. he tested me for EBV, CMV, hepatitis B and C, herpes... basically a lot of other infectious diseases to rule out. he also explained that he did not believe my lesion found on my brain was related to an infection because it didnt enhance on the MRI. i was also tested for celiac disease.
so now... after these three appointments i feel like im stuck and confused at a roadblock. i STILL havent had a confirmatory test, and i know i will find out about lyme in a week, but what if it is negative?? what if this isnt lyme? there are so many viruses out there that we dont know how to test for.... i just dont know what i should make of my past month and these last 3 appointments. does anyone have advice for me? treatments that worked for them? similar experiences?
on a side note, i just went to the nebraska/wisconsin football game yesterday and woke up feeling awful! i dont know if it was a combination of the cold weather, fighting off the rest of my cold, the loud noise of the stadium in the student section- we badgers are pretty rowdy lol ( and ive been sensitive to noise), drinking a little bit, shouting and cheering at the game or what but my chest feels drained from energy (like i dont want to talk), i feel achy, and just sick!! ughhhh it's hard because i knew going to the game was going to be filled with a potentially bad atmosphere for me but it's my senior year in college and im finally 21 and i just want to be back to normal!
sorry for the rant/novel, but i really would appreciate some input!