Lyme experiences?

[Taconic]

I know there are a couple of lyme disease threads in the first few pages of the forum, but I've read them and I'd like to ask a few questions since many of you seem to have direct experience with the subject.

Let me preface by saying that I have a doctor's appointment tomorrow morning.

Since last fall, I've been very lethargic. In early Sept, I did the Bonds in a day, drove the 4 hours home, went to sleep, and woke up ready to do it again. Barely a month later, I did the Baldfaces, and it took me several days to recover. Quite a contrast and definitely not normal for me.

Since fall, I've had a general feeling of fatigue. I never really felt sick, but I did feel under the weather for about 5 weeks after the Baldface trip. I've done little hiking this year since I haven't felt up to it. Since last fall I've dealt with random spots of soreness, especially in the joints and neck that come and go as they please.

What finally made me decide to go to the doctor (I have no insurance) is what has happened over the last month: One night I woke up 3 or 4 times and found one of my arms asleep. This persisted for a few nights, and after a few days my arms had a feeling of general fatigue. It hasn't been that frequent since, but it does happen, and what concerns me more is that my left arm sometimes feels as if I just whacked the funny bone--tingling and numbness in the lower parts of it. I've been getting more severe neck and joint pain (especially the left wrist/elbow) and occasional bouts of what could best be described as lightheadedness.

I'm familiar with the general symptoms of lyme, and a lot of these seem to fit. I live in CT, so I tend to keep a close eye out for ticks whenever I'm in the woods, but I don't recall pulling one off within the last few months. I didn't get any rash, but I know that's not a deal breaker for lyme.

I also haven't had a screening for it since 2005 (which was negative.)

Basically, I'm just wondering what people who have had experience with it think. Do these symptoms sound familiar? Is there anything I should say to the doc?

I appreciate any input. I'm actually hoping it's just lyme, because the alternatives seem even less pleasant.

 

[Remix]

I think you should tell the doctor everything and not rely upon the internet for medical advice.

I thought I had lyme last summer, and the blot test was negative. When I developed rheumatic pain over the winter, tests were run again and the result was negative.

So I think you have to depend on your doctor.

BTW, Connecticut has a lower cost medical insurance health plan available now to all citizens. See here.

 

[Taconic]

I think you should tell the doctor everything and not rely upon the internet for medical advice.

That's the plan.
I'm just looking for a bit of reassurance from the internet.

BTW, Connecticut has a lower cost medical insurance health plan available now to all citizens. See here.

I will have insurance after the 31st. It's required and charged as a part of my tuition. I just don't have it right now and haven't had it this year so far.

 

[J.Dub]

Agree that you should explain all these symptoms to your doctor.

That said, my (confirmed) bout with Lyme several years ago had much more acute symptoms. I didn't have a general feeling of fatigue, but the worst-jet-lag-you've-ever-seen-bordering-on-narcolepsy type fatigue. High fever that wouldn't break...chills/sweats...massive joint aches. No nerve tingling, though.

Lyme affects different people differently, however, so I'd be keen to see how others' symptoms compare.

 

[spider solo]

Ok, I just had my appt today... mighty nervous with the joint pain and random tingling. (had a confirmed case last year).
Was expecting more than a take a couple of Advil response that I did get.
Uncertain what to do this year while I wait for the blood work results, but I'm sure going to watch the 'Under Your Skin" movie mentioned in the other thread.
Motivated enough to delay leaving for our usuall Canada destinations.....

 

[Taconic]

Tonight has been pretty awful. No sleep for me. I've had pains jumping from joint to joint and, judging by the cracking, a bit of swelling. Slight temperature, too (98.6. Which should be good, but I normally run a cool 97.3 and always have.)

I guess I'm just posting this to help kill the 4 hours I have left before the appointment. Advil isn't helping me get any sleep.

The worst part of this is that I've only gotten two real hikes in so far this year as a result of feeling under the weather. The Bulge and Waumbek. I had big plans for this summer, too. I hope this clears up. I'd like to at least be able to enjoy the fall. I had a big Whiteface-Passaconaway-Tripyramids out and back planned, but I'm currently in no state to do it.

 

[Puck]

In addition to the antibiotics and anti inflammatories I also went through six weeks of pysical therapy which helped. I hope things work out for you...

 

[Taconic]

In addition to the antibiotics and anti inflammatories I also went through six weeks of pysical therapy which helped. I hope things work out for you...

Bummer. PT is no fun.


Well, I went to the doc's. I offered no conclusions, only symptoms, and the nurse immediately told me I need a lyme screening. She says it has been a particularly bad year for it in the area.

The doc offered no diagnosis beyond "it's not cancer and it's not cardiovascular," but he ordered the lyme test as well as a few others. I should know something tomorrow.

I don't really know anything more than I did yesterday, but somehow I'm far less nervous about the whole business.

 

[Chip]

did you ask what will happen next if the test comes back negative ? (as they often do)

 

[Taconic]

did you ask what will happen next if the test comes back negative ? (as they often do)

I asked him about false negatives and he said that he's testing for something arthritis related as well. If the lyme comes back negative and that comes back positive, I believe he's going to assume that I have lyme anyway since there's no reason that whatever he's looking for should be in my blood at my age.

He's also going to subject me to another series of blood tests to be certain.

I just hope I get something tomorrow. Today's shaping up to be pretty unpleasant as well.

 

[roadtripper]

Based on what I've read on this forum and others, do not be shy about getting a second opinion. Also, are you sure your doctor is experienced with Lyme? There's a HUGE descripancy in the knowledge of doctors in regards to Lyme these days.

 

[Taconic]

My doctor is pretty versed in lyme. He sees a lot of cases.
If it comes back negative, I'll be seeing somebody else anyway because he leaves for vacation this week.

I'm still waiting for my bloodwork.
Results for the CBC and sed rate have come back, and they're "normal." I'm not sure how that bodes for a lyme diagnosis. Since it's an infection, I'd imagine it'd cause an elevated white count.

edit:
Lyme came back negative.
So now nobody has any ideas.

 

[erugs]

Taconic - don't give up. I've had several negative tests but my new doc is preparing to put me on meds. My former doc was great, but her hands were "tied" in regards to experience treating Lyme. There seems to be a great variance in the medical profession, even among those who seem to be Lyme literate. I contacted NH's Lyme guru, David Hunter, to find a doctor who goes along with the idea of treating because false negatives and hesitant acceptance of the wide-spread-yet-hidden-nature of Lyme.

Under Our Skin is showing in Concord:

Under Our Skin will be showing in Concord at the Red River Theatres for one week 8/28-9/3. Please spread the word and encourage people to attend, particularly those outside the Lyme community. This is an excellent opportunity to increase public awareness and knowledge about this misunderstood disease. I will be doing Q & A sessions following the 8/28 & 9/1 screenings and also tentatively after the 9/3 screening. It would be so great if all seven showings were sellouts. Dave

 

[Taconic]

Taconic - don't give up. I've had several negative tests but my new doc is preparing to put me on meds. My former doc was great, but her hands were "tied" in regards to experience treating Lyme. There seems to be a great variance in the medical profession, even among those who seem to be Lyme literate. I contacted NH's Lyme guru, David Hunter, to find a doctor who goes along with the idea of treating because false negatives and hesitant acceptance of the wide-spread-yet-hidden-nature of Lyme.

Under Our Skin is showing in Concord:

Under Our Skin will be showing in Concord at the Red River Theatres for one week 8/28-9/3. Please spread the word and encourage people to attend, particularly those outside the Lyme community. This is an excellent opportunity to increase public awareness and knowledge about this misunderstood disease. I will be doing Q & A sessions following the 8/28 & 9/1 screenings and also tentatively after the 9/3 screening. It would be so great if all seven showings were sellouts. Dave

Thanks for the support.

I had a follow up earlier in the week. It turned out that the lab had screwed up some of my blood tests. Rather than reordering them due to my insurance situation, the doc decided to treat me for "general tick-borne illness" with a 3 week course of doxycycline.

I've been on it for 48 hours now and, while I'm still extremely sore, it's nowhere near as bad as it was last week and the "muddy" feeling in my head has greatly lessened. I can actually walk distances again without my legs screaming in pain and feeling like I'm going to fall over at any minute.

My coverage will kick in before my next follow up, so I'm going to have them do a full blood workup while I'm there just to see what turns up (and to make sure it's gone, whatever it may be.)

 

[erugs]

I hear you with that feeling of possibly "falling over at any minute." The pain, too, but I haven't heard others mention the fear of falling. I feel as though I'm stumbling my way along, like a drunk, not at all in a straight line. I make up for it by pretending I'm dancing or looking around at the scenery.

 

[spider solo]

I'm up here in the Que still following the thread.
The "falling over feeling" or light headness to the max, which I suppose is one step ahead of passing out. Not the best thing I want when kayaking, but realized the true danger... mowing the lawn just before we left to come up here. Had to sit down before I cut my foot off or something.

Doc gave me 2 weeks of med and actually said wait a week for the blood work...if results are neg don't take it.

Hugely dissapointed when we left the doc my wife asked if I wanted to go directly to the hospital. I said no. We filled the scrip and I started the meds the same day we left the doc.

This is day 8... I feel hugely better. Just about back to normal.
I would say my biggest fear is that she did not prescribe enough and it reoccurs after a short while.

I also took the advice and went to see the movie...Now I keep a daily journal and have my wife take a video, only a few seconds or so every few days, just to have some kind of reference for myself or others like a doctor to judge things.

Next time I see the doc (probably the last time I ever want to see her)
I expect her to be irrated I ignored her advice, but not as irrated as I am that she would have let me wallow around and not even try to see if the med would help.

It's like if somebody told you to stand in the middle of a RR track with a train coming while they fiddled around with the traffic light...some times you just have to think for yourself.

Good luck... I bet it will help immeasurably !
Keep us posted, there will be others on these forums who will have to deal with Lyme from hiking /paddling or whatever.

 

[Chip]

but realized the true danger... mowing the lawn just before we left to come up here. Had to sit down before I cut my foot off or something.

Doc gave me 2 weeks of med and actually said wait a week for the blood work...if results are neg don't take it.

Wrong Doc.

They must have to explain to somebody if they write a prescription for longer than 10 days or 2 weeks, which I consider the "get out of my office and pay your bill" prescription, NOT the "I believe you and am concerned" prescription.

 

[daxs]

3 weeks of meds is the norm for lyme. If the doc did not want you to take the meds until test results came back, she should not have given out a script. In the states you can call everything but schedule II narcotics into a pharmacy. Even then you can call an few days of an emergency script into the pharm followed by a written script She could ahve waited for the results and then provided the 3 week script

 

[Chip]

She could ahve waited for the results and then provided the 3 week script

My first bout of Lyme, my Doc phoned in a 3 week prescription after I called his office with my symptoms: migrane and bulls-eye. No office visit, no test. FWIW.

 

[weatherman]

Diagnosing Lyme

A visit is important, to exclude other diagnoses or to pick up things you might not recognize (such as Lyme-related heart rhythm problems as a source of lightheadedness!!!), but 3 weeks is typically the norm around here, unless it's just a rash - then only 2 weeks. It's important to keep in mind that the official guidelines are vague, and the 2 vs 3 week thing is more local custom than anything truly evidence-based. Right answer is, we don't know.

And it has been one heck of a Lyme year here too. Maybe double the usual number of cases. I don't think it's reportable, so official numbers are unavailable.
Weatherman