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Struggling With Lyme Disease

Blogs > Coagulation
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Coagulation
Profile Blog Joined July 2006
United States9633 Posts
Last Edited: 2017-05-19 17:19:38
May 17 2017 01:26 GMT
#1
I just got blood work done yesterday and havnt got the first phase results back yet but Im pretty confident that Im dealing with lyme. It has been an absolute nightmare and I feel like I need to vent and maybe get some feedback from anyone else that has had experience with it.

It all started about 2 months ago. I was taking my socks off getting ready for bed and found a strange scab on my shin that looked really different. It was very blotchy and flaky and when I touched it it fell away instantly and left no indication of a wound or anything under it. I had no recollection of hurting myself there and didnt really think much of it at the time other than it looked really strange and not good at all.

Fast forward about a week and I started having really severe hip pain that would radiate down my leg and into my feet. I tend to do a lot of running around at work and I do get pains now and then so this was pretty unremarkable at the time so I just popped some ibuprofen and toughed it out.

The pain came and went for a couple days and I wasn't too concerned until a little bit later my left testie started to ache along with it. The pain went from a small pulse to being kicked in the crotch full blast every 2 seconds in a matter of days. I had also noticed I was waking up drenched in sweat in the middle of the night with extremely bad shakes and weakness that made me dizzy and extremely sick to my stomach.

At this point I had entered full panic mode as I could tell something was horribly wrong with my body. During this time I had no recollection of the strange scab being significant and started to assume I had testicle cancer or some kind of auto immune issue in my hip. I quickly made my way to the doctor and explained the pain and she ordered blood testing. While I was there I asked them if there was anything I could take for anxiety and she recommended an SSRI gave me a prescription and sent me home to wait for blood test ressults. I started to take the SSRI the next day and thats when I got hit with the major symptoms.

My brain felt like it was being scoured with acid. A constant cold burning sensation would flow up from my neck into my head and then wash down my body / torso / limbs leaving me in convulsions and extremely weak. There was no way to fall asleep because there more I tried to focus on sleeping the more intense the sensation would get. I stopped taking the ssri because I had suspected it was making things worse. The symptoms got worse and I had stopped sleeping. I had stopped eating. I was in a fever state 24/7 my entire body was in constant nauseating agony and I had to piss every 5 minutes regardless if I drank anything or not.

About 4 or 5 days later I had went back to the doctor and she had discussed the blood work results. Everything came back normal and she said other than me losing about 17 pounds in 2 weeks there was nothing wrong with me. This was the point where I had lost my mind. I had basically been so sick that I couldn't leave my bed for longer than an hour without passing out and there was apparently no reasonable explanation that could be provided. I still had not put together the symptoms and the bite on my shin.

So I went home and basically had just accepted that I was going to die as I got sicker and sicker and there was nothing anyone could do. A couple days later I started losing the ability to walk or even lift cups and plates. My wife and I decided I should go to the emergency room. I had to have her open the car door for me because I could barely even stand at this point I was so weak the door was an unmovable object.

After explaining my symptoms the hospital staff did more blood work on me.. did an xray of my chest and pelvis did scans of my testie checked my liver and kidneys. Everything came back normal. They had no idea what to tell me so they basically gave me some fluids in an iv and some pain meds and wished me good luck as I went back home to suffer in absolute desolation.

My father called me the next day and asked me if I had been bitten by any ticks because he thought it sounded like I had lyme. I told him no but later after thinking about it I had finally remembered the small scab on my shin (theres no sign of it ever even being there other than the fact that there is no hair on that part of my leg anymore) and started looking up information on lyme disease symptoms. Everything clicked. The symptoms mirrored mine perfectly and it was easily treatable with simple antibiotics. I called the doctor and scheduled a visit with my new self diagnosis and got some antibiotics.

So after having taken the antibiotics (I was prescribed amoxicillin for 4 weeks) for a little over a week the fever and intensity of the symptoms have slowly started to dissipate. The awful burning sensation is mostly gone except for a light bit of it for a couple hours after I take the pill. Apparently I start to feel the symptoms again after taking the meds as the bacteria is being killed off it releases toxins into my system that make me feel sick. after about 3 hours I start to feel a little bit better. my weight is still ping ponging back and forth between 150/155. (my avrg weight is around 175)

The shakes and sweating are much milder now and im able to sleep now for stretches of 5-6 hours without too much trouble. I still have extreme joint pain and discomfort pretty much all over and my stomach is still very upset all the time ( feels like my gut is being clenched constantly ) but the flu like feeling has gone away for the most part. Its still really hard to eat and im getting some uncomfortable heart palpitations that seem to originate from my stomach. these are increased after taking the meds. but seem to be hopefully wearing off as I recover. When I first started taking the meds my heart rate would sky rocket so bad that I was afraid to even move.

I get some slight numbing sensations in my feet and hands and my head/neck aches really bad pretty much all the time and my joints are popping and snapping like popcorn anytime I move them but compared to what I was feeling like before I started taking the meds I am doing better. I still got 2 and a half weeks to go so hopefully I continue to recover.

****
BigFan
Profile Blog Joined December 2010
TLADT24920 Posts
Last Edited: 2017-05-17 01:51:54
May 17 2017 01:51 GMT
#2
Sounds like you've had quite the experience. Glad you figured out the cause and are on your way to recovery! Best of luck!
Former BW EiC"Watch Bakemonogatari or I will kill you." -Toad, April 18th, 2017
micronesia
Profile Blog Joined July 2006
United States24772 Posts
May 17 2017 01:57 GMT
#3
Good luck Coagulation. Please let us know how things go. If your treatment goes well make sure you buy your dad a nice steak dinner or something when you are better.
ModeratorThere are animal crackers for people and there are people crackers for animals.
kitaman27 *
Profile Blog Joined April 2009
United States9245 Posts
May 17 2017 02:57 GMT
#4
Hope the recovery goes well!

It's kinda crazy to think that things could go downhill so quickly without the doctors having any ideas what is wrong. Must have been a scary couple of weeks.
I'm better than dirt. Well, most kinds of dirt. I mean not that fancy store bought dirt. That stuffs loaded with nutrients. I... I can't compete with that stuff.
AxiomBlurr
Profile Blog Joined November 2012
786 Posts
May 17 2017 04:42 GMT
#5
Hey man, sorry to hear you have been sick and experiencing this, please post back soon to let us know if your symptoms have improved after taking the antibiotics.
Th1rdEye
Profile Blog Joined December 2006
United States1074 Posts
May 17 2017 04:44 GMT
#6
That sucks good sir. Make sure you actually get a diagnosis as opposed to self diagnosis via internet or friends.

Good luck to you. I hike quite a bit in PA... ticks surely are troublesome.

My girlfriend came home from hiking one day and I found one on her hairline... little fucks.

I had one on me after a music festival.. was able to get a pocket knife underneath it luckily and flick it out of the car before it stuck in good.

Hope everything works out for you, those symptoms sound bad.
from the days of: TheMarine [NC]...YellOw [H.O.T.]-Forever99 OgOgO [_MuMyung_] ChRh PlayGrrrr.... SlayerS_`BoxeR` [Oops]Reach [ReD]NaDa [DF]zergboy..!! Pusan[S.G] Nal_rA GARIMTO SSamJJang ChoJJa JinSu Silent_Control iloveoov H_PauL_WII JulyZerg [DaK]JoYo
Vivax
Profile Blog Joined April 2011
22316 Posts
Last Edited: 2017-05-17 08:21:43
May 17 2017 07:25 GMT
#7
There's no way you have a bacterial infection that doesn't show up in your blood.
Nevermind they dont cause inflammation.

Either way, wish you a good recovery and hope you find out what it is. Some causes you can only diagnose when you know what you're looking for.
Zambrah
Profile Blog Joined June 2011
United States7393 Posts
May 17 2017 10:07 GMT
#8
Damn dude thats rough, glad you did get a solid diagnosis though, surviving is definitely a helpful aspect of life.

Go slap the shit outta those doctors.

Also, fuck ticks.
Incremental change is the Democrat version of Trickle Down economics.
Korakys
Profile Blog Joined November 2014
New Zealand272 Posts
May 17 2017 12:10 GMT
#9
Damn, when you're that sick you should basically be trying to find a new doctor every day until you can get a reasonable diagnosis. I didn't used to think this way until I was misdiagnosed myself (for a very benign thing though).

Get well soon.
Swing away sOs, swing away.
opisska
Profile Blog Joined February 2011
Poland8852 Posts
May 17 2017 12:41 GMT
#10
I am not really sure, what do you make of the scab? Lyme is transmitted by ticks, tick bites do not leave particularly interesting scabs and the main tell is the red circle around the bite. Self-diagnosing is not a very reliable thing to do, because you faces enormous confirmation bias. I wouldn't call it diagnosed until a definitive objective result comes back.

In any case, given your symptoms, I find it curious that the doctors took it so lightly. It really does look neurological (but I might be also biased, given my neurological condition) and neurological issues should not be taken lightly. Maybe it was just specialisation blindness? It really happens a lot in the modern medicine, where doctors have troubles seeing obvious things when they are not in their particular field.

For your own sake, I hope the tests come back positive and you'll know what you are dealing with. If they don't, but you get better after the antibiotics, I urge you to not take that as a sign that those worked - I don't want to stress you unnecessarily, but the symptoms you describe could be an MS relapse, which often gets better on its own after a couple of weeks.
"Jeez, that's far from ideal." - Serral, the king of mild trashtalk
TL+ Member
Fecalfeast
Profile Joined January 2010
Canada11355 Posts
May 17 2017 14:25 GMT
#11
Well now I feel bad not hanging out in the music room more. Get well soon coag I hope it's not lyme disease
ModeratorINFLATE YOUR POST COUNT; PLAY TL MAFIA
riotjune
Profile Blog Joined January 2008
United States3394 Posts
May 17 2017 14:45 GMT
#12
Yea without the bullseye rash and a history of hiking through some northeastern woods, Lyme disease is going to be hard to pin down since the other symptoms are nonspecific (fever/malaise) or can be attributed to other stuff (arthritis/neuropathy/heart disease), unless you happen to have them all at once I guess.

Reminds me of a friend who got malaria in Korea, the doctor didn't diagnose it correctly and the guy lost 20 pounds in two weeks while feeling straight up like shit.
Coagulation
Profile Blog Joined July 2006
United States9633 Posts
Last Edited: 2017-05-17 15:41:39
May 17 2017 15:31 GMT
#13
On May 17 2017 23:45 riotjune wrote:
Yea without the bullseye rash and a history of hiking through some northeastern woods, Lyme disease is going to be hard to pin down since the other symptoms are nonspecific (fever/malaise) or can be attributed to other stuff (arthritis/neuropathy/heart disease), unless you happen to have them all at once I guess.

Reminds me of a friend who got malaria in Korea, the doctor didn't diagnose it correctly and the guy lost 20 pounds in two weeks while feeling straight up like shit.



I live in Michigan in the woods. For what it's worth the doc had said she thought I was right after I discussed it with her.
riotjune
Profile Blog Joined January 2008
United States3394 Posts
May 17 2017 17:07 GMT
#14
On May 18 2017 00:31 Coagulation wrote:
Show nested quote +
On May 17 2017 23:45 riotjune wrote:
Yea without the bullseye rash and a history of hiking through some northeastern woods, Lyme disease is going to be hard to pin down since the other symptoms are nonspecific (fever/malaise) or can be attributed to other stuff (arthritis/neuropathy/heart disease), unless you happen to have them all at once I guess.

Reminds me of a friend who got malaria in Korea, the doctor didn't diagnose it correctly and the guy lost 20 pounds in two weeks while feeling straight up like shit.



I live in Michigan in the woods. For what it's worth the doc had said she thought I was right after I discussed it with her.

Well that narrows down the diagnosis, I think it's a pretty good chance of it being Lyme disease as you said. So two weeks doxy? Hope you get well soon.
Jealous
Profile Blog Joined December 2011
10321 Posts
May 18 2017 08:24 GMT
#15
Pretty sure Lyme disease is uncurable but manageable ): Best of luck.
"The right to vote is only the oar of the slaveship, I wanna be free." -- бум бум сучка!
Epishade
Profile Blog Joined November 2011
United States2267 Posts
May 18 2017 16:25 GMT
#16
Holy shit. That sounds terrifying.

Good luck man.
Pinhead Larry in the streets, Dirty Dan in the sheets.
opisska
Profile Blog Joined February 2011
Poland8852 Posts
May 18 2017 18:55 GMT
#17
On May 18 2017 17:24 Jealous wrote:
Pretty sure Lyme disease is uncurable but manageable ): Best of luck.


Maybe are pretty, who knows, but I don't know why are you so sure. Early stage Lyme is perfectly curable in the sense that the infection is removed, however there may be lingering symptoms due to nervous system damage. Later stage disease is trickier, but also with good prospects.
"Jeez, that's far from ideal." - Serral, the king of mild trashtalk
TL+ Member
Jealous
Profile Blog Joined December 2011
10321 Posts
May 18 2017 19:17 GMT
#18
On May 19 2017 03:55 opisska wrote:
Show nested quote +
On May 18 2017 17:24 Jealous wrote:
Pretty sure Lyme disease is uncurable but manageable ): Best of luck.


Maybe are pretty, who knows, but I don't know why are you so sure. Early stage Lyme is perfectly curable in the sense that the infection is removed, however there may be lingering symptoms due to nervous system damage. Later stage disease is trickier, but also with good prospects.

Granted my information is about 10 years dated but I went to school in an area with very high incidence rate so we learned a lot about it. Could have been fear mongering. You are also correct that catching it sooner can lead to a near full recovery but even then the spyrokete can burrow into the bone and be practically immune to at least the previous generstion of medication iirc.
"The right to vote is only the oar of the slaveship, I wanna be free." -- бум бум сучка!
Coagulation
Profile Blog Joined July 2006
United States9633 Posts
Last Edited: 2017-05-19 17:19:15
May 19 2017 17:07 GMT
#19
So after having taken the antibiotics (I was prescribed amoxicillin for 4 weeks) for a little over a week the fever and intensity of the symptoms have slowly started to dissipate. The awful burning sensation is mostly gone except for a light bit of it for a couple hours after I take the pill. Apparently I start to feel the symptoms again after taking the meds as the bacteria is being killed off it releases toxins into my system that make me feel sick. after about 3 hours I start to feel a little bit better. my weight is still ping ponging back and forth between 150/155. (my avrg weight is around 175)

The shakes and sweating are much milder now and im able to sleep now for stretches of 5-6 hours without too much trouble. I still have extreme joint pain and discomfort pretty much all over and my stomach is still very upset all the time ( feels like my gut is being clenched constantly ) but the flu like feeling has gone away for the most part. Its still really hard to eat and im getting some uncomfortable heart palpitations that seem to originate from my stomach. these are increased after taking the meds. but seem to be hopefully wearing off as I recover. When I first started taking the meds my heart rate would sky rocket so bad that I was afraid to even move.

I get some slight numbing sensations in my feet and hands and my head/neck aches really bad pretty much all the time and my joints are popping and snapping like popcorn anytime I move them but compared to what I was feeling like before I started taking the meds I am doing better. I still got 2 and a half weeks to go so hopefully I continue to recover.
Psyonic_Reaver
Profile Blog Joined June 2007
United States4342 Posts
May 19 2017 20:34 GMT
#20
Love your artwork. Sorry to hear about the disease and it infuriates me how often its people that figure out what's wrong and not doctors and their nonchalant attitudes. Glad its finally being treated.
So wait? I'm bad? =(
Chill
Profile Blog Joined January 2005
Calgary25998 Posts
May 20 2017 11:34 GMT
#21
That's crazy. Glad to hear you found out what it was and are getting better. Being sick, and having no idea why, is the more annoying feeling.
Moderator
endy
Profile Blog Joined May 2009
Switzerland8970 Posts
May 21 2017 10:02 GMT
#22
Sorry to hear that, Lyme disease sucks. I'm living in an area full of ticks, they usually carry anaplasmosis more than Lyme but we're always taking precautions. Geranium oil is the best tick repellent.

Best wishes for a speedy recovery
ॐ
DarkPlasmaBall
Profile Blog Joined March 2010
United States45905 Posts
May 21 2017 13:58 GMT
#23
Holy shit that sounds absolutely terrifying Glad you're getting treatment and it sounds like you're getting better! Best of luck on making a full recovery
"There is nothing more satisfying than looking at a crowd of people and helping them get what I love." ~Day[9] Daily #100
Uldridge
Profile Blog Joined January 2011
Belgium5157 Posts
May 21 2017 22:54 GMT
#24
Glad you're better. Absolutely weird they didn't find anything in your blood. No elevated antibodies either? What the heck..
Taxes are for Terrans
Skynx
Profile Blog Joined January 2013
Turkey7150 Posts
May 21 2017 23:00 GMT
#25
Get well soon bro
"When seagulls follow the troller, it is because they think sardines will be thrown into the sea. Thank you very much" - King Cantona | STX 4 eva
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