posted
So I just joined and was diagnosed with LD in early January 2008. Unfortunately, the doctor that had the blood tests done on me for LD(which I requested myself) is not too bright, to put it quite nicely. He put me on antidepressants four weeks and said, "None of your symptoms sound serious to me...light sensitivity?...strange neurological symptoms?...debilitating fatigue?..eye pain and blurred vision? anxiety and irritability? facial muscle twitching?..No, what you need are some antidepressants." What that ignorant doctor referred to as "not serious symptoms" has been taking over my life since late May 2007. Memorial day weekend I went down to southeastern Ohio with my buddy to camping and hiking in the state forest. Having extremely long hair as I did then, I quite expected to find a good many things in my hair after our long, off-trail venture into the heart of the Wayne Co. State Forest. Later that night I scratched something on the back of my neck and sure enough, after a little more scratching, I pulled out a nasty little deer tick. No sooner, than ridding myself of that bugger did I find two more on my upper neck all cozy and nestled in, reeking havoc. A few hours later, a went for a swim in a pool and two more nasties came prancing out of my head. And so it began. The next two days were terrible to say the least. I had a terrible exhaustion, fever, chills, buckets of sweat and the worst overall weakness I've ever felt in my life. I knew deer ticks carried LD, but I just didn't know anything about the disease, aside from the Erythema Migrans it leaves on its victims(which I've found in my research is absent in upwards of 45-50% of patients). For that next month, I suffered from an uncontrollable exhaustion and sore throat, which was very strange for me, as I can never remember being sick before during the summertime in my life. I assumed it was stress or CFS. The fatigue got worse and soon very subtle, but oh so real neurological symptoms set in along with a few others. For the remaining few months of summer I was terribly fatigued and never felt like myself mentally or physically. I felt as if my brain were soaking in a puddle of mud. I couldn't concentrate, feel emotions the way I used to, cognitively process information as I used to. I thought to myself that I must only be imagining it all. Well, summer faded though the fatigue did not, and in fact it drastically increased along with all my other symptoms and other new symptoms which had begun to set in. School had begun, and I was truly that I would not be able to make it through the semester. I began researching and checking every illness I could think of on webmd.com(no I don't think this site is considered research). I'd rule out one disease after another and felt completely hopeless. I had only one possible cause for the array of neurological and psychological symptoms I had been experiencing: brain cancer or some sort of brain abscess. Luckily, it I finally got an MRI in December that proved I was free of those. I began seeing a doctor at school well before this during the semester, though she just continued to make poor guesses that I could have made(CFS, etc.) that didn't account for nearly half of my symptoms. Finally, I told my doctor to run a Lyme test on my blood. He did and called the next day and said I had it and should take for weeks of Doxycycline and I'd be free as a bird...idiot. The man did not even ask if I remembered being bitten by a tick and if so, when it had occurred--two essential questions in diagnosing LD. I was extremely skeptical of this Dr...let's just call him antidepressant..AD for short. I found that there was absolutely no evidence in any study or patient that 4 weeks of Doxy would cure late-stage LD. I then had a spinal tap and MRI performed on me. The results "proved that I didn't have Lyme meningitis"-as said my neurologist. Though I have found in my research that 30-35% of late-stage Lyme patients routinely test negative on Western Blots ran on their spinal fluid. Either way, this doctor said the positive ELISA from DR.AD was not sufficient for a LD diagnosis. True, the ELISA is a worthless test for LD, but not when it is positive in person who was bitten by 5 deer ticks 8 months prior, who had endless symptoms associated with the disease that began 8 months prior...hmmm. Should I be a doctor?..Who's to say--I can this, I was a completely healthy 19 year old college student prior to 8 months ago. I've been researching LD for over a month--it's a nasty, evasive disease to say the least. DR. AD finally agreed to refer me to an ID specialist after I was adamant and angry(though he was extremely reluctant because I refused to take his Doxy). Turns out the clinic won't see me though because I don't have a positive Western Blot test to back the LD with. First of all, the Western Blot is a completely arbitrary blood test since it does not contain the two most sensitive bands for Borrelia (31 and 33). The CDC doesn't allow labs to test these bands, which is outrageous..apparently it has something to do with them attempting to hatch a vaccine for LD...God, I wish I would have had that..if it existed and worked. Anyways, if you have actually stuck with me here on this long and dreary message, cheers. I am coming to my point. I am currently miserable, though still attending school at the university as best I can. I have received no treatment for LD. The ID clinic won't see me, DR. AD has 4 weeks of Doxy at the pharm. waiting for me, and the only "good" Lyme doctor in the state can't get me in until mid-May...hmm...I feel like I'll be dead by then. Yes, I know I won't, though I swear this is horrible and getting worse each day. I need treatment now. I need antibiotics, and I will see anyone in WI who knows anything about Lyme who can help me soon. So please, if anyone has read this all, let me know if there is anyone, anyone you know of that could treat me, possibly soon for LD in WI. I already did the online referrals at one of the Lyme sites-I called the one WI doctor it showed...booked until mid-May. Please help me. Even if you know an ID specialist of general practitioner maybe who helped you through late stage LD, let me know. Also, possibly a Minnesota doctor would do..too if I have to travel a little for a good doctor I'll do it. Oh, and I'm going to have blood sent to Ugenex in CA, does anyone recommend this? or is it not worth it in my case? Also, do you personally send the blood to Ugenex?
I thank you in advance for anyone who cares enough to read this all and at least offer some feedback.
you can email me or message me on here or just reply.
Posts: 98 | From WI | Registered: Feb 2008
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