Join Date: Jul 2012
Need LLMD in Upstate NY, near Oswego
Greetings to all,
Well... yesterday, I came to the conclusion that my son and I had Lyme Disease...
For me, symptoms started years ago with weird tingling/numbness at the tip of my lips and tongue. Had a bunch of tests done... nothing found. Then, I had a series of weird heart skips (which I can easily feel) that lasted months. Bunch of tests done, they "saw" those skips but determined that they were benign. But as suddenly as they came in, they eventually went away. Then, a few years back, I started having weird and cycling constrictions to my upper esophagus (still happening to this day). Did a bunch of tests... nothing found. More recently, I started having back pain problems around the kidneys and in the groin region. My back feels like sports related aches. 2 weeks ago, I had pain in my right testicles for a couple of days. I'm now scheduled for both an(other) endoscope and to see a urologist. Additional things I had noticed BEFORE KNOWING ANYTHING about LD included:
- Cyclic highly sensitive Lymph nodes in my neck and, more recently, in my groin area.
- We all have occasional ringing noise in our ears but I had noticed episodes where I'd get a lot of them in a short period of time.
- Muscle spasms all over my body, especially a few weeks ago. I had them in both my eyelids... then I'd have 1 behind the leg (weird place), then somewhere in my abdomen. They would sometimes last for as as little as a few seconds, to the all day recurring spasms (eyelids).
- Extreme headaches sometimes lasting 3 days, even after taking over 20 Tylenols/ibuprofen a day!
- Always tired. Need daily naps after work.
- Occasional episodes where I'd constantly have sore throat.
- A little carpal tunnel syndrome (which could be justified, considering my line of work)
- Cold feet (tip of my feet)
- I have "snapped" at my son, more often than I wish (anger, not physical).
- can't remember names to save my life.
So I was resigned to see the 2 specialists in the following weeks, not expecting them to find much.... as usual. Until yesterday, that is! Yesterday, my son told me about some weird feelings in his tongue. This wasn't the first time. He had mentioned that before, occasionally. I had even bought a water dispenser, thinking it could have been related to the house water. But unlike me, his episodes only lasted a couple of days and were few and far between. But yesterday, I specifically asked him how it felt and it was very similar to what I had. So I figured this was enough and concluded it couldn't be a coincidence. So I started Googling on this common symptom. That's how I landed on Lyme Disease. Then... total shock as I read other symptoms! Here's why (he's 7, btw):
- Numbness in tongue and sore throat. Ok... not the "interesting" part, but there.
- He's needed glasses since he was very little. Yes, that could be unrelated... but since LD can also affect vision... one must wonder.
- He almost always complains about belly aches after meals... sometimes, very intense belly aches.
- Not so much now, but a few years back, he was ALWAYS constipated. Sometimes requiring the use of induced methods to make him go.
- Hypersensitivity to sound. For years, my son has ALWAYS blocked his ears on medium sound levels.
- My son always complains about the sunroof in the car and always likes to pull the blinds down in the home office (where we end up too often...). He can play outside fine but it's certainly not something he loves to do. So there could be some mild photophobia there.... don't know...
- Over sensitive to temperature. For years, I had noticed that just mildly warm water temperatures were too hot for him. He's meals often need to be much colder than mine for him to find them ok.
- Overly emotional reactions... so much so, that I have been calling him drama queen for years as a result of it (in a humorous way).
- Short term memory lost. Sometimes, I'd ask him about something that he should so obviously remember and he couldn't give me an answer. I often got frustrated with him cause I couldn't possibly imagine he couldn't remember the event (whatever it was).
- A little verbal difficulties. He will often repeat the same partial sentence before his brains finally "unlatches".
- Sometimes when he reads, I have noticed that he'll kind of get blocked on some insignificant word... then he'll go.. "ok... ok..." and starts reading again. Kind of a mental blockage (He reads very well for his age, but these blockages seem "out of place").
- Skin/nails issues
- Can't stay focused on a task. We're talking about short term task here! I tell him to go put his shoes on to get ready to leave... he'll get distracted by about 12 things along the short way to the door... This is something I have been frustrated with many times before.
But here comes the more interesting parts...
- It took him unusually long to start walking, as a baby.
- I remember all of his joints popping when we'd pick him up, as a baby.
- He's had birth defects to his knees called Lateral Discoid Meniscus. He's had both of his knees operated on since, to correct the problems. No history of such disease on either side of his parents.
- Clumsiness and poor gross coordination. He's only been able to jump down (with both of his legs) a 1' high step in recent months! He's doing much better now, but I have to motivate him. It's not natural like in other kids. But very little coordination at pretty much any physical activity. This is not the result of an overcritical father.... These are just facts and I have learned to lower my expectations in that regard, a while back.
- I found that LD could also explain autism like symptoms. My son is a little different. It's really nothing much and he's a very smart and adorable boy... but you can tell he doesn't behave like other kids in most circumstances.
It's important to note again that I had noticed all of this BEFORE knowing anything about LD. So I'm not trying to retrofit the symptoms based on my new knowledge of the disease. Soooo.... considering all of this (especially the last 2 bullets), you can see why I'm now extremely anxious to find an excellent LLMD in my area. I'll drive a few hours if need be!
So please... can anyone refer me to a good specialist? I've read from Dr. Charles Ray Jones that sometimes, a milder long term solution on antibiotics may be preferable to a shorter term aggressive approach. Any inputs on that?
Sorry for the long message… but I hope it can help others, at least.
Thanks in advance!