I am brand new to the forum and have lots of questions and concerns that I hope somebody can address.
My history is very complicated.
When i was a teenager, I used to whip my head up and back to dry my very long hair to give it body and over the yrs it caused major whiplash in my neck. I suffered from soft tissue damage, loss of curve, arthritis, bulging discs and pinched nerves. it was not until a chiroprator cracked my neck bak in 1982 and that's when all my problems started. I never had any symptoms until my neck was cracked. I couldn't work, be a normal mother to my three kids, do the things that normal mothers did because of my neck.
it has gotten much, much worse over the years where I can't drive or do anything. I am not in pain per se, but have terrible muscle aches and tightness in my neck, shoulders, scapulas, back and hips causing sciatica now. Well, enough of the neck. Fast forward to 2004....I had a very bad cold and took Zithromax for bronchitis and used Zicam (not the spray) to try to lessen the cold. I realized after the cold was gone that I coudn't smell or taste, I freaked out. I went into a severe depression with anxiety so bad, I was a basketcase. My parents tried to help me (they live in florida and I live in NY) they told me to come down and they would try to help. after a month there, they gave up and couldnt take me anymore, so they took me to their doctor who without knowing me put me on Xanax and that was the start of my downfall. I got addicted to it and came back home to NY with a refill that was not good in NY. I tried to find a doctor who would give me more but I couldn't. I ended up in the ER in withdrawal. they gave me enough Xanax until I could find a shrink to ive me more. I didn't want to be on it but knew you just can't stop or you could die or have seizures. as a nurse this freaked me out even more. I found a benzo support group who taught me how to safely get off of xanax using valium. i found a doctor who would help me but had to stop seeing him due to finanaces (he didn't take insurance) and then found a shrink who worked with me to get off who I could afford with insurance. it took over 18 months and a horrendous and painful w/d to do it but in december 2006, I took my last dose and was finally free of it....but that is not the end of the story of suffering.......from all the suffering mentally and physically I put myself through, my immune system was compromised and I noticed my leg and foot swelling a lot all the time. I noticed a small lump in my groin and after going to numerous doctors including my uncle and dismissing it from nothing to a lypoma, I found out through a MRI I had Non Hodgkin's lymphoma and I had a major clot in my femoral vein which was cutting off my circulation and was making my leg swell. I had to start on coumadin and heparin and immediately had to start chemo for 6 months. I lost all my hair all over and was so sick from the chemo and high doses of prednisone they gave me too. eventually my smell came back but it was not easy to deal with all that was on my plate. again, my story doesn't end here. all the while, my neck and muscles got worse and worse and i thought i had fibro, which I think i do. I am also and at that time as well, was going through menopause and this too gave me some crazy symptoms. I know menopause can cause smelling and nasal issues, anxiety, and muscle pains and aches, hot flushes, cold flushes, affect the thyroid and adrenals. from all the stress, I developed adrenal fatigue with high and low cortisol and a high TSH with low Free T's, low sodium and other blood tests that were less than optimal. I was never aware of such things as adrenal fatigue. I have been too sick to go back to my oncologist and have a new PET scan and honestly, dont want to know about cancer or deal with it because I am in no shape to do so. besides I told myself I will not go through chemo again, the cancer will have to kill me and right now, death seems so appealling, all the suffering would be over. I joined many support groups and have learned so much but learned i might have LYME too. My Elisa test came back negative but I knew that this test was worthless. I insisted on my DO to order tests from Igenex and when they came back last month I went into a depression, scared and beside myself. There were bands!! I do have high antibodies for EBV, parvo, mycoplasma pneumonaie, cyto and have all the symptoms of CFS too. my IgG AB's were the high ones but the IgM were normal. I don't understand the difference really. they never taught this to us in nursing school.
I was okay 2 yrs ago, just having my neck issues to deal with, making me dizzy, lightheaded, having swelling of the eyes and feeling cold all the time. I found out that thyroid can cause these problems along with depression and many others. I want to know about the bands and if I have lyme disease and would appreciate it if someone could help me decifer the results. Igenex/CDC said i was negative and my PCR was negative too. I never had the CD-57 test. my doctor is ordering it. I have a positive 41 band on both IgG and IgM and on band 31 and 39 it is indeterminate and a positive band on 66. no other bands found. What does this all mean? I am not deathly ill, not bedbound and don't have the classic lyme symptoms. I don't have joint pain, fevers, swollen glands, knee pain, Palsy in face, heel pain, etc. what I do have is the muscle aches and pains, tight neck mostly. I was told that EBV/CFS and fibro can give you the same symptoms but can they appear with bands on the Igenex test? is there something else that can cause bands? I am scared to death. I made an appt with a lyme doctor down in NJ (Dr. Streit) but honestly we are broke and I can't afford these astronomical fees these doctors charge. I called Dr. H in NY and he is charging over 900.00 for the first visit and a deposit of 475.00 just to hold a spot. I haven't called Dr. C in Mt. Kisco yet.
Alot of my symptoms are associated with the other conditions I have, so I am not sure of what is going on.
am I in denial? should I worry? I am allergic to most AB's and already have candida. I dont fare well on AB and hate their side effects.
now, to add insult to injury, my precious, supportive son, my best friend (have lost all my friends over the years and am isolated in the boonies) is leaving to go into the navy this Wednesday and i haven't stopped crying making me even more tensed up and anxious/depressed. he was the one who took me out and took me to the doctors, was there to talk to and gave me comfort just knowing someone was around, especially because I can't smell and fear something going wrong in the house and i won't know it.
Now all I will have is a drunken husband who is in denial himself, is not there for me and tells me I am fine. he goes to work all day and leaves me here alone, sees people and has something to do all day to pass the time away. I don't have anything and all I will dwell on is the isolation, the fear and the unknowns. Can anyone help me???? PLEASE!!!!