Had a follow-up with the ID doc today. As many suggested, two weeks isn’t enough for the meds and he said the same thing. Because I’m such a good patient, he’s giving me another four weeks of Doxycycline – woohoo! The great news is that he tested for all other tick borne diseases and I’m clear. Didn’t get me this time you little blood sucking bastards.
I told him about the gastro problems I had and how everything I read said to take the meds with food. He said to take it an hour before meals, but not to take it with meals or it minimizes the effects. He also said it’s not uncommon for the gastro problems to happen even if you’ve tolerated the meds for a week without problems, which I did. The good news is I get to stop the pills if my stomach gets pissed, the bad news is I get the IV. Come on iron stomach, don’t fail me now!
The doc is great and the people in the office are too. That’s a good thing when you’re feeling like crap.However, it’s a little unnerving when you hear them talking about the CDC calling about something. Got to wonder who was in the exam room before you – uggh! Guess you have to expect that when you’re at an infectious disease doc. Maybe they should have a room for little annoying infectious diseases like LD and one for bad ass ones.
Got a response on my blog from someone who was very kind to give me some info (thank you Mary Ann!) Following are some of the symptoms she’s passed on. I’ve got quite a few, but thankfully, not the real bad ones (knocking on a lot of wood right now). If you think you have LD and have a combination of any of these symptoms, go get tested!
- Unexplained fevers, sweats, chills, or flushing
- Unexplained weight change–loss or gain
- Fatigue, tiredness, poor stamina
- Unexplained hair loss
- Swollen glands
- Sore throat
- Testicular pain/pelvic pain
- Unexplained menstrual irregularity
- Unexplained milk production: breast pain
- Irritable bladder or bladder dysfunction
- Sexual dysfunction or loss of libido
- Upset stomach
- Change in bowel function-constipation, diarrhea
- Chest pain or rib soreness
- Shortness of breath, cough
- Heart palpitations, pulse skips, heart block
- Any history of a heart murmur or valve prolapse?
- Joint pain or swelling
- Stiffness of the joints, neck, or back
- Muscle pain or cramps
- Twitching of the face or other muscles
- Neck creeks and cracks, neck stiffness, neck pain
- Tingling, numbness, burning or stabbing sensations, shooting pains
- Facial paralysis (Bell’s Palsy)
- Eyes/Vision: double, blurry, increased floaters, light sensitivity
- Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
- lncreased motion sickness, vertigo, poor balance
- Lightheadedness, wooziness
- Confusion, difficulty in thinking
- Difficulty with concentration, reading
- Forgetfulness, poor short term memory
- Disorientation: getting lost, going to wrong places
- Difficulty with speech or writing
- Mood swings, irritability, depression
- Disturbed sleep-too much, too little, early awakening
I found out the hard way that the instructions provided with Doxycycline to take it on an empty stomach isn’t the best way to take it. It didn’t bother me at first, but the last couple days, I was starting to get really sick. I was taking it in the morning before breakfast and at night before bed.
I did some research and nearly everything I read advised to take it with food AND not to take it before lying down (i.e. right before bed). Apparently, it does a job on your esophogas if you don’t allow gravity to take it down.
So, ask your doc or pharmacist what they recommend or you might be in for some intestinal misery.
Took my final dose last night. Not sure it did anything, but have an appt with the ID next week to see what’s next.
There’s an uneasy feeling about going to see an infectious disease doctor. You look around and wonder “what does he or she have and can I catch it?” Then, you realize they’re all looking at you asking the same thing! Everyone’s breathing is noticeably shallow and no one sits near another. You’re careful not to touch your eyes or mouth with your hands and you don’t dare cough or it may clear the room 🙂
As I was checking in, the receptionist commented about the number of patients with Lyme Disease. The doctor also mentioned that he’s treated over 2000 cases! It’s a real problem in this area, which is why I’m sharing.
The doc did a full exam, asked a lot of questions and didn’t discover any issues other than what I already knew/felt. He affirmed it was LD and suggested we see how the doxycycline does over the next two weeks. He felt strongly the stabbing pain is nerve related resulting from LD as is all the other pain. If the meds work, it should relieve the pain. If nothing changes in two weeks, it’s IV time.
Here’s a little Q&A I had with the doc. I don’t remember all the questions I asked – memory loss from the LD (see below):
Q. Is it curable or treatable.
A. He danced around and I gathered it’s treatable and you may be stuck with the damage
Q. How do you know if it’s getting better or worse?
A. If it gets better, the pain should gradually go away. If it gets worse, you could see neurological problems like facial paralysis (should have skipped that one)
Q. Are you 100% certain I have LD?
A. The blood test and symptoms make me certain (buzz kill)
I gave them a little more blood to see if the little bugs carried any other payloads and I was on my way.
Oh, he also said he didn’t think I needed my lymphnodes removed, so he was going to call the surgeon and cancel my procedure. Apparently, the surgeon is a little short on extra lymphnodes (or cash), so he convinced the ID doc that I should still come see him.
On my ride home, it occurred to me that there may be some benefit to this condition. I can blame things on LD now!
For example, I had to start wearing reading glasses recently – it’s because of LD. My lack of hair – LD. I’m a little grumpy in the a.m. – LD. My poor writing – LD. I backed into my wife’s car Saturday a.m. – yup, LD.
In all seriousness, diagnosing and treating this is critically important. If you suspect it, make them test you! The longer you wait after the bite, the worse the symptoms get. Five months ago, I was running 4-8 miles a few times a week. Recently, I practically needed a cane to walk!
“Often, we are too slow to recognize how much and in what ways we can assist each other through sharing such expertise and knowledge” – Owen Arthur
First, let me make it clear that this isn’t a blog to seek pity or anything to that effect. I have a blessed life, so there’s nothing to feel bad about. The reason for this blog is to share what I’ve learned and experienced dealing with LD. Hopefully, this info will spare others from the long list of health issues that this ectoparasite carrying Borrelia burgdorferi will cause. I often preach about sharing personal stories to get people to listen to an important message. This is an important issue and message, especially for families in New England.
Let me also make it clear that I’m not an expert nor do I have a lot of knowledge about Lyme Disease, but I’m learning – and as I learn, I’ll share. I hope any or all of you will as well.
The good news is that I found out what’s been causing my aches, pain and misery over the past few months. The better news is it wasn’t something really bad like I thought. The bad news is that it could/should have been diagnosed early and it wasn’t.
In April, 2011, I had a round, red rash on my right thigh. It grew pretty large and felt warm (infected). There were no cuts and no obvious bites, so I wasn’t quite sure what it was. I went to see my primary, and asked the Nurse Practictioner (NP) if it could be Lyme. She quickly discounted that theory and said it was cellulitis, wrote me a prescription for antibiotics and sent me on my way.
The rash went away, so I assumed the antibiotics did the trick. Unfortunately, the Lyme rash (called erythema migrans) goes away on its own, so the antibiotic appeared to have treated the problem, but it was the wrong problem.
As the months passed, I began having increasing muscle and joint pain (among other problems). It started with a stabbing pain in my back that radiated into my ribs, and then pain in my shoulder, knee and hip. Since it was all on my right side, I attributed it to previous injuries; however, I couldn’t understand why everything seemed to be flaring up at the same time and so extreme. Growing old(er) wasn’t supposed to be this bad! I was starting to think I was destined to have knee, shoulder, back and hip surgery all in one whack.
I changed doctors (for many reasons) and after noticing some swollen lymphnodes, requested that she test for Lyme. She did and the tests came back positive. I’m now over five months since I had the rash and started Doxycycline. No noticeable change yet, but I guess it can take a few weeks.
While I’m really ticked off that the NP didn’t order the Lyme test when the symptoms clearly pointed toward Lyme, I’m also ticked off that I didn’t insist that the test be performed. Doctors and NP’s are human. They get busy and sometimes, like all of us, can’t see the forest through the trees (i.e. they can miss the obvious). We need to be our own advocates – for ourselves and our children.
Tomorrow, I go visit the infectious disease doc. Maybe he’ll tell me it isn’t lyme and that I’m just getting old (heard that a few too many times).
Bottom line – if you see deer (in your area) beware. If you get bitten by a tick, beware. If you have a round, red rash, get tested! Moreover, if your kids start exhibiting symptoms, get them tested! Oh, and don’t forget your pets (both of my dogs were tested and it was negative, but we got them after we moved).