posted
Unlike a lot of people here, I never suspected Lyme Disease but recently tested positive on both the Western Blot and Elisa. I was shocked. I live in Colorado where there are very few cases of Lyme Disease and haven't been to the mountains in years so haven't had contact with any deer ticks, nor have I ever spotted a tick on my body at any time. However, I did visit my sister in Western Wisconsin where there are a LOT of Lyme-Disease-carrying ticks, even spending the night in a tent. I'm trying to figure out if I've had this for years, or was recently infected on my visit last June to Wisconsin. The most worrisome part is my 13-year-old daughter is exhibiting a lot of the same symptoms as I am, so I took her to her pediatrician for a blood test. He stated that "Lyme is easy to treat with a 4-6 week course of antibiotics" which I now know is wrong, so after we get her blood test results, I'm going to have to seek out a pediatrician who knows more about Lyme Disease.
My symptoms and conditions, Lyme or otherwise:
-fatigue -- as long as I can remember -co-infection -- had mono 25+ years ago, plus recently tested positive for HHV-6 and Epstein-Barr -have had mysterious rashes occasionally appear and disappear over the years -joint pain -- several joints over the years, but most recently in my knees -brain fog -- again, years -Vit. D deficiency -there's probably more but brain fog is making me forget them!
There's more, but you get the idea. I'm on minocycline and Amoxycillan (sorry about spelling if that's wrong) for about 2 months now, with 4 refills to go (at least this doc is serious about treatment). I am also on Flagyll 1 week every month for 4 months.
When I started taking the 2 antiobiotics, the knee pain hit with a vengeance. It may have even started before I was diagnosed -- I don't remember. It roamed from left to right knee and finally settled in my right knee. Once I started the Flagyll, all knee pain went away. YEAH! Otherwise, the other two meds are making me slightly nauseous and very tired, but are tolerable. I also have constant diarrhea that looks very strange -- like worms (sorry -- TMI?). Oh, and a couple of Lyme-looking rashes have appeared AFTER I started the antibiotics.
Does the new presence of knee pain mean that I maybe was infected just last June? I'm hoping so. But I've had other symptoms and co-infections for years, so maybe not. I asked my doctor to look into hyperbaric oxygen treatment in Colorado, and she is going to do that. She is treating me with both antiobiotics and homeopathic rememdies, so she is very open to any kind of treatment, "experimental" or otherwise.
My 13-year-old has had problems with fatigue and concentration since the 2nd grade, about 5 years ago. If we were infected at the same time, that means we've had this for awhile. If she does have Lyme, she's getting worse because her concentration is definitely getting worse. She's a smart kid who can't listen in class, remember her schedule or homework, and gets mostly C's and an occasional D. She left her cell phone in a friend's refrigerator the other day! She's on ADD medicine (Vyvanse) which is helping a little, but she's still so spacey and foggy (no drugs, no alcohol -- I know for sure). She also cannot and I mean CAN NOT get up in the morning (just like me before I started treatment)
So -- for my questions: does it sound like I was infected just last June (from the symptoms), or possibly years ago? What sort of symptoms pop up first, and what ones seem to come later? If I can figure out the timing, then maybe I can have a better idea of what I'm dealing with. Also, with my daughter, if I can determine I was infected last June, there's a good chance she was, too. But, then again, we were both in Western Wisconsin years ago -- maybe around the time she started losing her concentration.
Daughter's symptoms include: -lack of concentration (about 5 years) -epileptic-type seizures -- manifested itself in jaw spams -fatigue -trouble waking up -frequent headaches -gets dizzy and even passes out often (blood pressure is on the low side but not very low)
Gotta get an antiviral IV now! At least MY doctor treats me well. Thanks for the help!
Posts: 39 | From Colorado | Registered: Dec 2009
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julielynne4
Unregistered
posted
Well first of all, you don't have to be around deer ticks to get lyme and coinfections. Lyme is everywhere - and it can be transmitted through fleas, mosquitoes,etc...(someone can correct me if I am wrong).
From your symptoms alone, it certainly is possible that you have had this for a long time. It is possible that your daughter has also had it for a long time. It's hard to say, of course, but I don't think it's that uncommon for people to not know that they have lyme for many years.
It is quite possible that you were re-infected last spring, which might make some symptoms worse or new ones appear. I was re-infected last year and became very ill, which finally led me to a diagnosis of lyme, which I had since I was 12 but could never get diagnosed (I am 37 now).
My 13 year old son also has lyme (as do my other kids) and his attention, like your daughter's, has gotten increasingly worse. Not knowing when your daughter actually first contracted it isn't as important as getting her to an LLMD and properly treated. It is awesome that you seem to have a doctor who is treating with an open mind. You might want to print out Burrascano's treatment guidelines and bring them to her.
When you do get your daughter's tests back, remember that the tests are extremely inaccurate and are NOT meant to be used to diagnose. PLEASE don't assume she doesn't have lyme if it's negative. All of my children have had negative tests but ALL have congenital lyme. It was only picked up in blood tests through Igenex Labs.
The new pain in your knees could mean you are herxing (see Herxeimer Reaction), and it is not unusual for rashes to appear once treatment begins. Again, this doesn't mean you weren't reinfected (or infected) in June.
Okay I am sure you will get all kinds of information from people here. Sorry if I am confusing...lol best to yoU! julie
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