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Eko

(7,865 posts)
Mon May 27, 2024, 08:24 PM May 27

I have Lyme disease.

I think it is what is referred to long term Lyme disease. I first got it in about 2004 and did the antibiotic treatment. I didn't feel bad or anything just had the circular rash. A couple of years later I had a lot of swelling in the glands on my face and they couldn't find a reason why. I did multiple blood tests and 2 MRI's that cost me about a grand each. Was referred to a doctor that thought I had Sjogren's disease but couldn't tell for sure. Moved up north and a couple of years later my gland swelled up bad, went to doc and they went through pretty much the same thing and couldn't find anything and gave me antibiotics again and it knocked it out. Fast forward and for the past 2 years I have had joint pain in my entire body that knocks me out for at least a day if not for a couple of days. Tons of test and still nothing. I've told my docs that I had Lyme disease before but they still couldn't find anything. Was out of work for a week and went back to doc and they still couldn't find anything, told them again about Lyme disease previously and they decided to test for it. Apparently they haven't been. Came up positive. They gave me antibiotics again and vitamin D. Doc said they were super surprised I had it and that it was the first they have seen in this area. The antibiotics make my stomach sick and I have still had about 4 days that I am stuck in bed with the joint pain and have no appetite. I recently saw on MSNBC about long term Lyme disease and pretty much everything they said made me go "That is me". Kinda crazy and it sucks tons. Anyways watch the video, I will embed it below also. Thanks for listening.
https://www.msnbc.com/morning-joe/watch/chris-meloni-among-advocates-lobbying-congress-about-lyme-disease-funding-211412037862
Here is a documentary about it.

&t=1s
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bucolic_frolic

(44,637 posts)
1. I've had it many times, but also a relative who had it underground like you did
Mon May 27, 2024, 08:29 PM
May 27

He was very old though, about 82. He spent 3 months in hospital with IV drip antibiotics. He recovered and lived many years.

A lot more is known about long term underground infections than 20 years ago. I'd want docs to make sure the medication is long enough so it won't return.

willamette

(152 posts)
14. I had it for 11 years.
Mon May 27, 2024, 09:53 PM
May 27

I don't have it now. Here is what I learned. It has three forms: 1) cell wall 2) no cell wall 3) cyst. Each broad-spectrum antibiotic goes after one form. the spirochete changes to the other 2 forms to wait it out. The way I finally got rid of it was by taking Amoxicillin, Bactrim, and Flagyl simultaneously until I was symptom free. I can't remember exactly, but I think it was 4 months. I decided that saying "I think I'm over it," means that you still have it. When it was finally gone, the statement that came out was, "I don't have it anymore." Yes, there were aftereffects of those antibiotics, and none of them were good. I read, in the Lyme newsgroups back in the day, that high pressure oxygen treatment really helped, but it didn't cure. There are legions of sufferers out there, and the most common diagnosis is "hypochondria."

Eko

(7,865 posts)
16. Wow, thanks.
Mon May 27, 2024, 09:58 PM
May 27

I will tell my doc about this treatment. I have felt for a long time now that I was going crazy and/or just being a huge baby. I would go to sleep and be stuck in bed in pain till the evening the next day, be able to get up for 2-3 hours and then have to go back to bed again and repeat. Thanks for letting me know!
Keep on keeponing.
Eko.

willamette

(152 posts)
19. I'm so sorry you and others are, and I and others were, dealing with this.
Mon May 27, 2024, 10:33 PM
May 27

It is really nasty. On the other hand, I have long COVID now, and the fatigue, brain fog, and falling over asleep every afternoon at 3pm are all very familiar. Been there, done that. At least the COVID only hurts when each new variant passes through, not all the time, like Lyme.

Eko

(7,865 posts)
20. I am so sorry you have long covid now.
Mon May 27, 2024, 10:49 PM
May 27

Keep you head up as much as you can and keep getting up.
Eko.

3catwoman3

(24,535 posts)
2. How frustrating for you.
Mon May 27, 2024, 08:32 PM
May 27

Have you seen an infectious disease specialist?

I hope something helps soon.

Eko

(7,865 posts)
4. No, not yet.
Mon May 27, 2024, 08:37 PM
May 27

I just found out in the past 2 weeks and didn't find out about long term Lymes until recently. Next time I go back to doc I will see if they feel like one needs to be referred.
Thanks tons!
Eko.

Wonder Why

(3,797 posts)
5. If you don't believe in God, then don't go to a doctor. Too many of them think they are Him and you'd better not
Mon May 27, 2024, 08:58 PM
May 27

dispute them or they'll accuse you of being a hypochondriac.

et tu

(1,283 posts)
10. where i live is
Mon May 27, 2024, 09:43 PM
May 27

tick haven [lots and lots of deer] and for some reason,
they love me so i have had lymes several times but there
are also many other tick diseases. none of them are good
for any other animals- even my dogs have had it and i use
nexgard for them. hopefully there will be a vaccine available soon.
please take care and recover~

OldBoss

(29 posts)
11. Ouch! ...
Mon May 27, 2024, 09:44 PM
May 27

As others have said you are your best advocate for docs who don’t take this seriously, and frankly there’s too many of them. I’ve had it a few times and get on Doxycycline for 30-days which my stomach tolerates. If they prescribe less, ask for more - there’s plenty of peer reviewed research. You really need to obliterate it if possible. In my home states of MN/WI we have family tick checks whenever it’s above 50F, we look like a bunch of monkeys but it’s essential. Best of luck to you!

Martin Eden

(13,039 posts)
18. Ticks are my biggest fear in the woods
Mon May 27, 2024, 10:09 PM
May 27

I like to go backpacking, often in areas with ticks. More than a few have attached.

The important thing is to do a thorough body search at the end of each day. Removing them promptly is the key.

H2O Man

(74,300 posts)
21. Recommended.
Mon May 27, 2024, 11:20 PM
May 27

I have had it six times, the most recent a couple months ago. More on that later.

My sister and a good family friend got lyme before the medical community were aware of it locally. They did not get proper treatment for months, making it severe. My sister had to retire, as did our friend. Both live very limited lives these days.

Both of my sons have had it once. Both had Bell's palsy affect one side of their facial muscles, both for relatively long periods. My younger son was a crisis response social worker at an large area school, and I know he was self-conscious about it.

Since having it the first time, of course, I am no longer tested for it. It will show up, even when I have zero symptoms. But when bite by a tick, I call my doctor, and she usually calls in the Rx for me. This last time, however, the tick was deep, and it required her using a scalpal to cut it out of my arm.

Warpy

(112,196 posts)
22. Reinfection with Lyme can happen
Tue May 28, 2024, 03:09 PM
May 28

and too many people don't get the rash or know they've been bitten by an infected tick. It can be really sneaky.

Testing needs to happen more frequently, I agree, whenever there's a symptom profile that suggests autoimmune disease but without autoimmune markers. A test for Lyme should be the next step.

Antibiotics will still clear it, even if the infection has been low level and of long duration. It hasn't become resistant, not yet.

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