Posted 5/21/2012 5:42 PM (GMT 0)
Hi all, my name is Beth - 34 years old, from Rhode Island and I have a very long story but will do my best to simplify it.
Basically back in May 2010 I came down with what I thought was the flu. A headache that would not go away, fevers, severe pain in my left hip to the point that I could not walk at times, tingles in my calves and feet, heat sensitivity, and a rash about the size of a quarter (yellowish center, outer reddish ring). At that time I had been spending time outdoors building a deck in a wooded area but didn't think anything of it. After 3 weeks of feeling like this I ended up going to the clinic. He suspected Lyme but ordered the test and gave me a prescription for a migraine medication. If I was not better or got worse was told to go to the e.r.
A week later I was dizzy, pain was more intense so went to the e.r. and I had extremely high bp that they immediately did an ekg to make sure I wasnt having a stroke. That doctor also suspected lyme by looking at the rash, ordered blood test and put me on Doxycycline for 30 days. The medicine did help, I felt somewhat better - at least better than I had felt. When I finished in July, by August I went back downhill so I called my primary care and he gave me another 30 days of Doxy. Again felt better, finished it in September but in November I was much worse.
Along with the headache, other symptoms I listed above (minus the rash - the rash had expanded, split apart and faded), I now had memory loss, confusion, trouble finding words, extreme dizzy spells, walking into walls, black wavy lines and tremors. I had to stop driving because I would forget I was driving and it got to the point that I was afraid of causing harm to others and myself. So went to a neurologist. Neurologist sent me for a neuropsych eval which showed 26% memory loss of short term. Tons of bloodwork which all came back negative. Eeg showed seizure activity. Mri's of brain just showed a partially empty sella. Mri of lower back showed 2 bulgeoning discs and a bone spur on my spine. All of which he said was nothing and told me I needed to get a personal trainer. I spent (wasted) 8 months with this doctor (was put on about 20 different meds over the course of the 5 months in which none did anything for me). In the end he basically told me it was in my head. He forged my paperwork with bp's, temps, etc which they never took. I also went to a dermatologist for sores on the back of my head that had been there since the beginning and were not healing - biopsies done, nothing found.
Went to another neurologist (April 2011-January 2012) all the same symptoms except now I had extremely low body temps (96.) so that became my new normal, and my calf muscles would harden like rocks and my left leg started dragging. He did another eeg, still some seizure activity. Repeated bloodwork and did others, all ana's negative, low bun, low rbc, low platelet, low hct, low hemoglobin and low vitamin d. Did an Emg, showed significant loss of muscle use on left side.
Sent me to an infectious disease doctor. Had a spinal done (only showed high leukocyte count). He sent me for other tests that all came back negative. He said he wouldnt rule out lyme disease because he felt I had been put on the doxy very early and that might prevent getting a positive result, but that I needed to go to a rheumatologist and that he would leave the door open if I wanted to try the lyme disease treatment and see if it helps.
Rheumatologist did more bloodwork, still all my counts are low and now c3 and c4 are low, cst low, vit d extremely low and sed rate at 18(had been slowly rising was 12, then 15, then 16 when i had spinal done). Bone scan was done, nothing shown. He called me a challenging case and said that since my chief complaint was the pain and non stop headache that i go to another neurologist. New neurologist redid eeg (showed my brain was slowing), did an mri and mra of my brain (showed a prominence in my p1 segment - the vessel had a bulge in it - but no big deal) but also noted that I had a mini-stroke. He suggested I talk to the infectious disease and try the lyme treatment to see if it helped. Worse case scenario, it would bring out other symptoms and that might lead to a true diagnosis.
4 weeks ago I had a picc line put in (they put it 8cm too far into my heart so they had to pull it back 2x) and was put on 100ml Rocephin (ceftriaxone). 24 hours later my arm swelled up 16cm larger that normal, i couldnt straighten it or bend it and it was bright red - went to e.r. had to have the line pulled cause I had 2 large blood clots. They put in an i.v. so i could do my injections for the next 3 days. Had a midline put in right arm (took them 3x with the help of a camera to put it in) continued my treatment. Ended up back in the e.r. with a 101 fever, and a huge lump in the left side of my neck (ultrasound showed all my lymph nodes had swollen into a ball- no clot thank goodness). Nurse came over and changed my dressing 1x a week, when she came last monday she pulled my midline out over an inch, said it was ok. I had a followup with the infectious disease doc the next day, as soon as he saw my arm he said we have to pull the line. I had a clot form from her pulling it out. He said he was not convinced it was Lyme since I did not have remarkable improvement and the fact that even being on an antibiotic I still ran a fever and my lymph nodes had now all swollen which showed infection. I asked if it was possible for it to be a coinfection, he said yes. He said finish the treatment for Lyme (including another 2 weeks of Doxy) but it is not his specialty and that he could not treat me anymore, told me to return to my neurologist or my primary care and have them investigate the lymph nodes, fever, etc. So that night they put an i.v. in for 3 days. Then on friday, they came to remove and put another iv in - tomorrow night is my last night of injections. Im glad im almost done with the ceftriaxone cause it literally feels like i have tons of bugs walking through my body after i do the injection.
My issue is that when you get an infection and feel like you have been hit by a bus on top of everything else - how are you supposed to know if the meds are helping along with all the other complications? I do feel better which is alot for me since this has been going on for 2 years.
Has anyone else had anything similar to this, symptoms, etc.? Anyone else had the ceftriaxone injections and what did you experience? Did it help? Have to do multiple treatments?
Does any of this sound like it could be a coinfection along with lyme? Does it sound like its Lyme at all? If not, what avenues do you think I should explore?
Last but not least...Do you think I should go to a llmd?
Thanks for reading my book and giving any advice or opinions - I appreciate it! :)