Hi, everyone. I'm new here. I don't have a lyme diagnosis, but the more reading I do, the more I am convinced I may really have this. I have had a lot of symptoms on that master list:
*Headaches (SEVERE, debilitating)
*Chronic strep throat (had ASO titer, doc calls it Perma-strep...haha)
*Bouts of pink eye (3 times, I had pink eye almost every other week over the course of 6 months)
*Arthritis of the spine
*Low grade fevers
*Blood pressure on the low side
*Elevated liver enzymes (recently VERY high)
*Ringworm (at least, I think it was)
I think that's all. I don't even know anymore. I've been searching for an answer to the headaches, and my dr. has been supportive. He's sent me to a neurologist, and I now have an appointment with an ophthalmologist, a scheduled brain MRI, and a scheduled EEG. Recently, however, my liver enzymes are high, and he has me seeing a gastroenterologist for that. I was tested for lyme - had an ELISA - which, of course, was CDC negative. I'm not convinced. I'm just looking for any suggestions, wise words, and support. Thank you.
Hello KerBer, First off the ELISA test is the most unreliable Lyme test that there is. In my expierence it is usually the first test ordered by a physcian who isn't up to speed on his Lyme knowledge. My first advice is to find a LLMD or Lyme Literate Medical Doctor nearest you. There are many helpful people on this board who will point you to the right direction. What I did and I would suggest you do is to contact IgeneX lab out of California. You can find them on the web. They come highly recommended. They will send you the blood sample tubes and a return Fed Ex package that you send with payment after you had the blood drawn. A doctor has to fill in the right codes or IgeneX won't process it. I had two negative ELISA tests untill IgeneX tests proved I had full blown Lyme disease. The usual test that is the most commonly ordered is called the Western Blot IgG and IgM. Western Blot IgM positive results indicate short term infection. Western Blot IgG indicate long standing infection. The longer that you have Lyme the greater chance it will show up as positive IgG, as in my case. So find a good doctor.
Hi, bigstan. Thank you so much for your reply. I've learned that the ELISA is the most unreliable test out there. Now, when you want to consult an LLMD, do you need a referral from your PCP? I've also heard a lot about Igenex, and I plan on calling for the kit. You just take it to your doctor and have him draw the blood? I know my questions may seem ridiculous, and I apologize. I'm only at the beginning stages of realizing I may have this, and I feel like I don't know which end is up. Thank you so much.
How long have you been sick? Regarding what you thought was ringworm, what did this look like? Was it itchy?
When Lyme disease is possible, it is very important to see a kowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols. No test is completely reliable, and results can vary by lab. It is my understanding that the ELISA or titer is the least reliable test and the one most doctors run first.
Besides Lyme, ticks can also transmit several co-infections including Babesiosis, two types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. Many people who have Lyme are co-infected, and it may affect treatment choice and progress. It is important to be tested for these by a Lyme reputable lab such as IgeneX in Palo Alto, CA.
If you need a doctor recommendation, let us know. There are some excellent Lyme doctors in NY. As far as I know, you do not need a referral.
It is also important to learn as much as possible. I recommend reading Dr. Joseph Burrascano's 2005 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses (on-line). He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols. I also recommend the book "Everything You Need To Know about Lyme Disease (2nd edition)" by Karen Vanderhoof-Forschner.
Hi, ticker. Thank you for the reply, and making me feel so welcome here. I feel like I'm crazy, sometimes, but here, there are people in the same boat.
How long have I been sick is a good question - the only thing that had me even do any research on this topic is these unbearable headaches, which have only been this bad for the past year and a half. I always got headaches, and sometimes bad ones, but recently, they are UNBEARABLE and FREQUENT! I was diagnosed with spinal arthritis in March. I went to the dr. because I hurt my back, and the CT showed significant arthritis. Low grade fever - every time I go to the dr. it's 99.5 or so. Even when I check at home, it's 'high'. I do have eye floaters - maybe for the past 2 years. The ringworm was in August 2000. I teach preschool, so ringworm can come with the territory. I do recall it had a definite center - it looked like a million little pimples, and it did itch a little. It was big, too, I thought, but the PA who saw me (only one I could get to see me without going to the ER) immediately said ringworm and I didn't question it. She gave me a cream and it took about a month to completely go away. Joint pains - in college ('96-'99) there were days I would wake up and I could barely walk. I felt like I was 90. I still have some days like that, but not like I did in college. I have had strep throat a lot. Got it for the first time when I was 23 - and I've had several bouts of it since then (I'm now 29). I was ASO titered, and my dr. says I am a strep carrier. Other recent bloodwork showed a reactivation of EBV/Mono. I never even knew I had it, but from what I understand, Lyme tends to reactivate viruses like that. Recently, too, my liver enzymes are quite elevated, and since my reading on Lyme, I noticed my Neutrophils are on the rise and Lymphocytes are declining (still within normal range on both, but barely). I also had a tumor in my stomach when I was 14. It was benign. 2lbs. 9 cms. long. No explanation for it - extremely isolated incident. The surgeon at that time said chances of these tumors are one in a million. Don't know if that's related, but maybe it is. I also have had lots of pink eye. I will go for 6 months getting pink eye almost every other week, then I won't get it again for 2 years.
Any thoughts?? Sorry this is so long. Thank you SO MUCH for your help and patience.