After 18 Months, I Finally Got A Diagnosis - Forums at Modded Mustangs
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post #1 of 23 Old February 4th, 2016, 07:02 PM Thread Starter
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After 18 Months, I Finally Got A Diagnosis

Hey, I know I haven't been on the site lately, but I've had a lot going on.

Just popped back in to give an informative update for those who care!

I'd also like to bring it to people's attention so that taking precautions might keep this from happening to someone else.

After nearly 18 months of tests and hopelessness, two weeks ago I was diagnosed with Lymes disease. I'm sure many are at least somewhat familiar, but for those who aren't, it's a tick-born illness. This disease can cause a lot of different issues (different for each patient) because of the way it attacks the body, so I won't even touch on that.

I've recently started a very heavy amount of antibiotics, as well as several other treatments, including hormone balancing (The bacteria can attack the adrenal glands and can mess up your hormones), etc.

While the doctor obviously cannot lie and guarantee my health, he does think that because of my age and the amount of time I've had it, that I will be able to live normally again at some point. Hopefully within two years.

He thinks that by the end of this year, I won't be 100%, but will be able to function much better than I am able to currently. At this point in time, day-to-day activities are extremely difficult and I have now missed my fourth straight semester of school, including the one that I had to forfeit. I'm hoping to get back into school by next spring semester.

There is a broad spectrum of symptoms and level of sickness for people with this disease

**********
Please be careful and cover up, etc. when going into the woods. If you have a tick latch onto you, remember to pay close attention to how you feel in the weeks (or months) after that. ALSO, it is a total myth that it has to be latched onto you for a certain amount of time. I found mine within hours and removed it. I'm now a patient with one of the top Lymes doctors in the US and he is the one that confirmed that the disease can be transferred almost instantly through their saliva.

I was bitten in July 2014 and was extremely sick within 6 weeks. It can weaken your immune system, so it happened that my dormant mono became active because of this and things slowly digressed from there to the point that "Chronic fatigue" was not a good enough answer for me. I could feel my body falling apart week by week and decided to explore Lymes.


Thoughts and prayers would be really appreciated while I try to beat this.

God bless
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post #2 of 23 Old February 4th, 2016, 07:21 PM
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Damn dude sorry to hear. My friend got Lyme's disease not long ago. It sucks it took you so long to get diagnosed. You should be back to a fairly normal life in not too long. The symptoms are a lot like my wife's Fibromyalgia (except that some people don't believe Fibromyalgia is real): fatigue, body ache, soreness, etc.

Sorry to hear but hopefully you'll be good. Just power through it and do whatever your doctor recommends until you've got it under control.
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post #3 of 23 Old February 4th, 2016, 08:55 PM
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Holy shit man, I'm glad you finally got it figured out, but that's ridiculous for it to take that long to catch. Lyme disease is not THAT uncommon

I tell the truth. Deal with it.
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post #4 of 23 Old February 4th, 2016, 09:26 PM
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Hope you get better OP

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post #5 of 23 Old February 4th, 2016, 10:08 PM Thread Starter
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Damn dude sorry to hear. My friend got Lyme's disease not long ago. It sucks it took you so long to get diagnosed. You should be back to a fairly normal life in not too long. The symptoms are a lot like my wife's Fibromyalgia (except that some people don't believe Fibromyalgia is real): fatigue, body ache, soreness, etc.

Sorry to hear but hopefully you'll be good. Just power through it and do whatever your doctor recommends until you've got it under control.
Yeah, I have those symptoms. Unfortunately, I also have a ton of others because it's affecting my brain. I can't think well and I'm never able to focus and do not feel "here" most of the time. It's difficult to explain. Like extreme brain fog. It has also caused sleeping disorders, which I am just now starting to resolve. Thanks for the encouragement!

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Holy shit man, I'm glad you finally got it figured out, but that's ridiculous for it to take that long to catch. Lyme disease is not THAT uncommon
Craig, here in TN they don't even acknowledge its existence. Sadly, I had to go to Missouri to get a viable doctor. Nashville has one of the best medical communities in the US (Vanderbilt), but is still not even in the modern times with this disease. You're right- It's not THAT uncommon; mostly, it's about the area you live in.

The testing is also pretty complicated. I had a Lymes test that wasn't taken seriously because my local doctor didn't know what he was looking at. Sad... I could probably already be healthy, at this point. I had that test almost exactly 1 year ago.

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Hope you get better OP
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post #6 of 23 Old February 4th, 2016, 10:27 PM
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Yeah, I have those symptoms. Unfortunately, I also have a ton of others because it's affecting my brain. I can't think well and I'm never able to focus and do not feel "here" most of the time. It's difficult to explain. Like extreme brain fog. It has also caused sleeping disorders, which I am just now starting to resolve. Thanks for the encouragement!



Craig, here in TN they don't even acknowledge its existence. Sadly, I had to go to Missouri to get a viable doctor. Nashville has one of the best medical communities in the US (Vanderbilt), but is still not even in the modern times with this disease. You're right- It's not THAT uncommon; mostly, it's about the area you live in.

The testing is also pretty complicated. I had a Lymes test that wasn't taken seriously because my local doctor didn't know what he was looking at. Sad... I could probably already be healthy, at this point. I had that test almost exactly 1 year ago.



Thanks, HD
My wife uses the term "invisible illness" (along with other sufferers of Lymes, Fibro, etc) and it really sucks because a lot of people will look at you and go "well you look fine! you're probably just tired" or "oh, you're young, you'll be feeling better by tomorrow".

My wife has said before she wishes she just had cancer so that she could at least have visible signs so people would take her seriously when she says she feels like absolute shit and would rather be dead than feeling the way she does on a bad streak. Add in the fact that some medical professionals don't believe these sorts of disorders are real and it can be an uphill battle. People seem to think that sufferers of these kinds of disorders are just attention seekers and drug addicts. I can promise you my wife would love nothing more than to not ever have to take the medications she's on ever again. Someone who runs marathons, works, pursues post-grad degrees, etc doesn't just decide one day she wants to be worthless.

Sorry for the rant, but reading what people say can be frustrating when you experience the reality of it first hand. If you are needing any support, feel free to PM me. My wife has figured out a lot of ways to deal with the pain and "fog" over the past two to three years.
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post #7 of 23 Old February 4th, 2016, 10:35 PM
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hope you get back to normal asap

I was diagnosed with Wegener's granulomatosis when I was 18, took them 2 years. Took my 7 years total to beat it (including the two un diagnosed).


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post #8 of 23 Old February 4th, 2016, 11:30 PM
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Good luck in the recovery. If it's not West Nile it's Lyme. I can't believe we can't come up with something to eliminate ticks. Luckily I have never had one burrow.
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post #9 of 23 Old February 4th, 2016, 11:47 PM Thread Starter
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My wife uses the term "invisible illness" (along with other sufferers of Lymes, Fibro, etc) and it really sucks because a lot of people will look at you and go "well you look fine! you're probably just tired" or "oh, you're young, you'll be feeling better by tomorrow".

My wife has said before she wishes she just had cancer so that she could at least have visible signs so people would take her seriously when she says she feels like absolute shit and would rather be dead than feeling the way she does on a bad streak. Add in the fact that some medical professionals don't believe these sorts of disorders are real and it can be an uphill battle. People seem to think that sufferers of these kinds of disorders are just attention seekers and drug addicts. I can promise you my wife would love nothing more than to not ever have to take the medications she's on ever again. Someone who runs marathons, works, pursues post-grad degrees, etc doesn't just decide one day she wants to be worthless.

Sorry for the rant, but reading what people say can be frustrating when you experience the reality of it first hand. If you are needing any support, feel free to PM me. My wife has figured out a lot of ways to deal with the pain and "fog" over the past two to three years.
Your rant is fine with me. I feel exactly as your wife does. Tell her that I sympathize with her and will keep her in my prayers. I had an Infectious Disease Dr. tell my parents (to my face) that it was all in my head and I needed to go back to school and I'd feel better. This was merely months after I had lost my soccer scholarship and livelihood. I finally feel like I have some hope again. For a while, I honestly thought I would just be sick forever, because no one had any answers for me.

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hope you get back to normal asap

I was diagnosed with Wegener's granulomatosis when I was 18, took them 2 years. Took my 7 years total to beat it (including the two un diagnosed).
I briefly Googled it to at least have a grasp of what you were talking about. Sorry to hear that you had to go through all of that. I know that people like us can fully understand how terrible some of these diseases are. I never had the proper understanding or sympathy before I went through this.
Glad that you beat it finally.

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Good luck in the recovery. If it's not West Nile it's Lyme. I can't believe we can't come up with something to eliminate ticks. Luckily I have never had one burrow.
As an extremely healthy 20 year old, at that time, I never could've imagined how much damage a simple tick could do. I didn't even give it a second thought. I was hiking 20 miles and camping in the mountains with two buddies when I found it on me. Now I can't even walk around the block, haha. We were pissing off of the top of a cliff and I found it somewhere near my junk (I can't remember exactly). It's funny, because after I was diagnosed, we all remembered that exact moment and that I had said something about it.

Life is crazy. I think that there's a lot of growth that happens in adversity, though, so I'm trying to take away as many positives as I can.
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post #10 of 23 Old February 5th, 2016, 12:44 AM
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Even though the disease I got fucked me up I came out stronger and more mature than I would have otherwise. I may have missed a lot of school but learned a lot about life that most teenagers don't get at that age. I am 23 and most people that meet me think I am 30 and I don't look 30.

I suspect you will experience the same kind of thing. I still haven't gone back to school other than finishing high school at 20 but I have made a name for myself and that has lead to a very exciting opportunity I will share in the next few weeks.

---------- Post added at 10:44 PM ---------- Previous post was at 10:42 PM ----------

One of the largest hurdles for me was just finding a doctor / people to believe that there was a problem and that I wasn't just a lazy teenager with an attitude. From the outside I looked healthy.
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post #11 of 23 Old February 5th, 2016, 11:34 AM
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Glad to hear that you got a diagnosis and will be able to treat it!

Idk how common of knowledge it is, but for those that don't know how to remove a tick, you're supposed to use tweezer and get as close to your skin as possible to attach to their mouths and gently pull away. Never squeeze their bodies because you might burst the tick open making it harder to remove or expel more disease-ridden fluid into your system.
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post #12 of 23 Old February 5th, 2016, 12:54 PM
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Glad to hear that you got a diagnosis and will be able to treat it!

Idk how common of knowledge it is, but for those that don't know how to remove a tick, you're supposed to use tweezer and get as close to your skin as possible to attach to their mouths and gently pull away. Never squeeze their bodies because you might burst the tick open making it harder to remove or expel more disease-ridden fluid into your system.
This is so much harder to do than described lol. Damn ticks have a kung fu grip and you're somehow supposed to overcome their force with tweezers while somehow trying to not squeeze too hard. I've had to do it to myself a couple times and its stressful as fuck.
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post #13 of 23 Old February 5th, 2016, 02:27 PM
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lol....I have to pull a tick a few times a month. Do you guys ever work outside?
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post #14 of 23 Old February 5th, 2016, 02:30 PM
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Glad you found a diagnosis. I finally got an answer today for my issues as well.
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post #15 of 23 Old February 5th, 2016, 02:38 PM
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Glad to hear that they finally figured something out to help get you on the road to recovery! Congrats and good luck!
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Glad to hear you finally have feedback and a root cause! I'm with Craig, during the summers, I will pull a tick off of me a decent amount of times, and Lyme's always runs through my mind when I do it.

I remember being at one of our keggers we had at a buddies house; well the next morning when I woke up, I went home and took a shower and found probably 10 of the little bastards on me. One of our friends passed out, on the ground, outside and he said when he woke up he found at least 20-30 on him. The little bastards are hard to find sometimes too, and are a pain to get off.

You're in my thoughts buddy, all will get better in due time!
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post #17 of 23 Old February 6th, 2016, 12:25 PM
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Glad to hear you got some answers Tyler.
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post #18 of 23 Old February 6th, 2016, 11:51 PM
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That's good news, how were they able to finally diagnose it? It must be nice knowing you will only get better from here. My parents have had it multiple times, luckily they had the same symptoms and were able to recognize it and get antibiotics.
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post #19 of 23 Old February 7th, 2016, 12:04 AM Thread Starter
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Glad to hear that you got a diagnosis and will be able to treat it!
Thanks!

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Glad you found a diagnosis. I finally got an answer today for my issues as well.
Thanks, RDY. Let's hear the good news! Sometimes getting an answer is the hardest part.

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Glad to hear that they finally figured something out to help get you on the road to recovery! Congrats and good luck!
Thanks for the kind words.

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Glad to hear you finally have feedback and a root cause! I'm with Craig, during the summers, I will pull a tick off of me a decent amount of times, and Lyme's always runs through my mind when I do it.

You're in my thoughts buddy, all will get better in due time!
Thanks, Treyson. Just be careful, they're out to get you

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Glad to hear you got some answers Tyler.
Thanks, Wyatt. It's about damn time, huh? haha

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That's good news, how were they able to finally diagnose it? It must be nice knowing you will only get better from here. My parents have had it multiple times, luckily they had the same symptoms and were able to recognize it and get antibiotics.
I ended up being blessed with finding who many consider to be the #1 Lymes doctor in the country. I had to fill out over 100 pages of detailed paperwork and get nearly a dozen tests, but he finally determined it. Mine was a unique case because most labs test 10 bands and the best lab (I forget the name, but it's in California) tests over 30. This gives a more accurate reading on the Western Blot test. My 41 band was positive. The 41 band is kind've a mystery still, so even if the CDC's minimum band thought process isn't met, you could very well still have a tick born illness. It's quite complicated, as opposed to most disease testing. The doctor said that 18 months is actually faster than average to figure it out. It makes me sad to think about all of the people suffering for so long like I was and possibly NEVER getting any answers because there isn't enough education on it in certain areas.

You parents are definitely lucky that they could recognize so quickly. If you catch it fast, you can heal much quicker. Once it sits, like it did in me, it's a much harder battle.


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post #20 of 23 Old February 7th, 2016, 01:07 PM
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Glad you got your situation figured out man. I can't imagine going through that. Our ticks out here just recently started testing positive for Lymes too. It seems like they're everywhere.

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