I've got lyme disease

[gailc]

My dad has had lymes disease two or three times already. He usually gets the bulls eye rash though. And knows the other systems for the doc puts him on anti-biotics for a couple of weeks and it clears up.

Get well vibes too you!

 

[motoko9]

Sending vibes that the antibiotic will clear this up. Get well soon, Laurie!

 

[strange_wings]

Since no testing was done, I hope this isn't the start of something else (and possibly autoimmune in nature - you have enough stress in your life to trigger something). The problem is that those who have/had lyme disease see it in everyone around them.

As for testing, it's not true that it can't be tested for. It's just that the ELISA test, as it is with most diseases it's used for, has a high failure rate. Western blot can test for it. Ironically the CDC only accepts info from ELISA positive cases.

If I were you, I'd make a list of diseases in your family.

I truly hope the doctor is very much wrong. If you do have it there's no telling how long you've had it without more testing, and even if you recently got it the doxy might not work. Chronic lyme's is bad - a serious disease that does not truly ever go away.

 

[catsallaround]

So sorry to hear

I have had it about half my life and its horrible. moms had it since late 80's.

 

[starryeyedtiger]

I hope you feel better soon hun!

 

[jcat]

that doxy does the trick and you feel better soon.

 

[farleyv]

Originally Posted by LDG

Oh yeah - I have some serious "brain fuzz" starting too.

I'm losing words... the funniest so far was the other day when I couldn't remember "dental floss," and I had to ask Gary where the "string for your teeth" is.

Gary's got short term memory problems because of his health issues, and he loses words too... our conversations are getting quite interesting. We'd probably be killer at charades these days.

And he put his back out badly a few days ago. We went to do laundry two days ago, and between his hobbling and my inability to grip anything, we could probably charge admittance for a comedy routine.

O that is awful. But you sure keep a sense of humor! I was laughing. But I sure hope you get better soon. It is so hard when you just hurt all over...know that well. We have lots of deer here too and my husband spends lots of time in the woods cutting wood. It is always something you have to think about.

Take good care both of you. I hope you come through the pain alright. Is there anything that can get rid of the pain...does tylenol or something help?

 

[momofmany]

I had lyme disease a couple of years ago and at first they put me on the wrong antibiotic. When the symptoms didn't clear and I went back to a different doctor, they were shocked that they didn't put me on doxycyline - that is the antibiotic of choice for the disease. A few weeks of the doxy and I was better.

I had the test run and it didn't test positive for lyme, but I had all the symptoms (including the bulls eyed rash) so they assumed that I had it. The test did show that I had (at some point in my life) Rocky Mountain Spotted Fever, so that gave them the conclusion that I had been bitten by a tick. That was a bit scary, since the death rate from that disease is about 15% without treatment. It's common to treat for the disease without a positive test.

Sending healing vibes your way. Take care of yourself for the next few weeks so your body's stress level goes down while you heal. Lyme can cause permanent damage if you don't knock it out.

 

[lorie d.]

Oh my gosh Laurie! You and Gary have really had more than your share of health problems!!!! I'm sending you lots of and hoping you feel better soon.

 

[sarahp]

Oh no, you poor thing! I hope it starts clearing up soon

 

[ldg]

Originally Posted by catsallaround

So sorry to hear

I have had it about half my life and its horrible. moms had it since late 80's.

Wow!

I've been hearing some real horror stories about Lyme... I also see a lot of people had it or know someone who did where antibiotics cleared it right up.

I wonder what causes the difference between treatable and nightmare?

 

[kailie]

Oh sweetie, I know nothing about lyme disease, but I do know that wonderful people like you sure as hell don't deserve it.

A big

to you and lots of vibes!

 

[nutrolori]

Sorry to hear this! My mother-in-law has Lyme Disease. We think she was misdiagnosed for at least 10 years(which is crazy because she lived in a VERY rural area). With it being diagnosed so long after she was infected it has reeked havoc on her body. Good thing you seem to have caught it early. I wish you the best and that you feel better soon.

 

[eilcon]

Thinking of you, Laurie.

 

[yayi]

More healing and health for you Laurie!

 

[cococat]

 

[ldg]

Originally Posted by strange_wings

Since no testing was done, I hope this isn't the start of something else (and possibly autoimmune in nature - you have enough stress in your life to trigger something). The problem is that those who have/had lyme disease see it in everyone around them.

Well, this isn't a doctor I looked up in the phone book. I've been seeing her for over a decade at this point, and I totally trust her. In fact, she's the one who diagnosed Gary - not one of the three neuros we'd already seen. Also, when I had what turned out to be neuropathy pain in my left hand/wrist and carpal tunnel and other problems had been ruled out by a battery of images and tests, she's the one who suggested I take B-6 and see what happens. What happened was no more pain.

So I highly doubt she's treating me for Lyme because she had it and "sees" it in everyone around her.

Originally Posted by strange_wings

As for testing, it's not true that it can't be tested for. It's just that the ELISA test, as it is with most diseases it's used for, has a high failure rate. Western blot can test for it. Ironically the CDC only accepts info from ELISA positive cases.

I'm not sure where anyone said it can't be tested for? She pointed out to me that there are a lot of false negatives - which is why she's treating me for it without the testing.

Originally Posted by strange_wings

If I were you, I'd make a list of diseases in your family.

Yup, she has my family health history, and we reviewed it as this wasn't just "the flu."

Originally Posted by strange_wings

I truly hope the doctor is very much wrong. If you do have it there's no telling how long you've had it without more testing, and even if you recently got it the doxy might not work. Chronic lyme's is bad - a serious disease that does not truly ever go away.

Well, hopefully this isn't chronic, and as the standard of care for Lyme is treatment with doxy, it seems to me this was as an initial step the prudent course of action.

I really appreciate that she's sensitive to our financial situation and my lack of health insurance, and was willing to treat based on clinical symptoms rather than requiring a battery of tests up front that may have not helped come to any conclusion.

We're treating for the most likely culprit given my list of symptoms (not all of which I listed here). If the treatment doesn't work, we've "only" lost a month, and then I have to figure out a way to afford the tests we'll need. We did discuss a number of things this could be and what testing would be involved. The list of infectious buggies I didn't write down, and as I wasn't familiar with them already, I can't repeat them because I don't remember what they were. But each one is a separate test. There are a number of other things this could be, but clinical symptoms don't quite fit things like rheumatoid arthritis or fibromyalgia (the only two I remember out the list of possibilities she gave me).

IF I've had Lyme for any length of time, I've had NO symptoms, so there's been nothing to diagnose. It is a disease where symptoms can show up after years... but given this just started within the last couple of weeks, seems to me standard treatment to rule it out is the right place to start.

 

[ldg]

Originally Posted by NutroLori

Sorry to hear this! My mother-in-law has Lyme Disease. We think she was misdiagnosed for at least 10 years(which is crazy because she lived in a VERY rural area). With it being diagnosed so long after she was infected it has reeked havoc on her body. Good thing you seem to have caught it early. I wish you the best and that you feel better soon.

Oh I'm sos orry about your MIL! That's so sad to hear.

for her! If what I have is Lyme, hopefully we caught it early enough.

 

[nutrolori]

Originally Posted by LDG

Oh I'm sos orry about your MIL! That's so sad to hear.

for her! If what I have is Lyme, hopefully we caught it early enough.

I am definitely keeping my fingers crossed for you. I don't wish this disease on anyone.

My mother-in-law was told heat helps because the spirochetes in the the blood don't like the heat. She sleeps with a heating pad a lot on her hands and feet.

My mother-in-law has gone through a lot. We believe because she was misdiagnosed for so many years is caused so many other permanent problems she has now. When they figured out that she may have Lyme Disease, after I asked if she had ever been tested, they put her on several rounds of antibiotics for a long period of time. They tried different ones to see which worked best, starting with Doxycycline. I even gave her Vitamin B shots per the doctors instructions. Mostly now she deals with anxiety and depression along with horrible joint issues. She sleeps a lot and has trouble getting motivated to do things. She also has trouble eating food, too much sugar and it makes her sleepy, woozy as she calls it. She isn't diabetic so we are trying still to figure out how to fix that. She doesn't eat all day except crackers and cheese or peanut butter bread. Then at night she eats a full meal and a bunch of sweets because she says she craves them. It is weird, when she does that she falls asleep shortly after because it makes her feel bad. I don't believe she will ever be at 100% again but she is better than she was several years ago. We moved her in next door to us so we can help her and she isn't alone. She is only 58, which is what bothers me the most. She is such a wonderful person and a great Grandparent to my kids. We want to get her back to 100% someday, we just hope we can.

I will keep sending good thoughts your way.

 

[ldg]

Oh WOW that is young! But if this is Lyme and went undiagnosed for 10 years... that'd be me! I'm so glad she has you and her son... and her grandkids.

I hope she gets back to 100% too.