Do I have Lyme

I'm new here & just needed some advise from you that have Lyme disease

Now my story is kinda complicating so I'll try my best to explain things well although I have a hard time explaining anything anymore

I'm 19 & from Kentucky & I am thinking I have Lyme disease but I'm not positive.

I have seen a Lyme specialist but I'll get into that later.

My journey began nearly 4 years ago. My first strange symptom appeared and it was what I would call brain fog. I just didn't deal mentally sharp. This would come & quickly go for about a year. I had seen a cardiologist & everything checked out fine!

That's where it's confusing to me. Whether the brain fog I had before had been from something else because I can't recall ever having a tick bite at this time.

A year goes by & me & my parents move to a deer & wooded infested area & can remember pulling ticks off of me occasionally. At least 4 I can remember. I never had a bullseye or a rash.

So about 3 months pass & I move into a apartment with my girlfriend & the first day goes well. Then I wake up feeling the brain fog that I had before the tick bites. So this wasn't new to me, I just tried to be calm & let it pass like it always did. After about a hour without it passing I decided to take a nap & that didn't even help.

To this day I still have that chronic brain fog. I just feel like I'm completely stupid. I do stupid things.. I walk around & don't even know what I'm doing. I feel as if I'm slightly drunk but just having a buzz.

So I began seeing doctors for this & was actually diagnosed with narcolepsy. I took all these narcolepsy meds for a year & nothing helped.. but in that year the brain fog was no longer my only symptom. Which made me believe I had been falsely diagnosed.

My symptoms are
1 chronic fatigue
2 unrefreshing sleep
3 insomnia! I usually go to sleep around 4 in the morning
4 very settle muscle pains that kinda migrate. The pains aren't very painful but I notice them.
5 muscle twitching
6 headaches that come once a day & leaves in 5 minutes.
7 light sensitivity
8 frequent urination
9 mood swings, irritability, had a couple episodes of rage.
10 competent cognitive decline
11 memory loss. I can barley recall what day of the week it is & have even forgotten what year it was a couple times.. pretty embarrassing.
12 poor circulation, usually wake up every single night with pins & needles from a sleeping limb. Even when I'm just barley laying on it
13 0 energy or motivation. Have a hard time getting off the couch.
14 vivid dreams
15 constantly losing focus. Watching tv is hard for me because I just end up staring into space
16 depression that never goes away no matter what I'm doing.
17 extreme social anxiety. Which I have never had in my life
18 suicidal thoughts which I've never had
19 eating binges, crave sugar!!
20 weight gain. I've gained nearly 40 pounds since feeling ill.
21 itchy sometimes, or feel like something is crawling in me when it isn't
22 daytime sleepiness
23 easily sweat.
24 No sex drive.


So as you can see I have Lyme symptoms.

So last week I seen a Lyme specialist & she thinks she could diagnose me clinically for Lyme, bart, & bab
My blood work just came in & the only band that was reactive was band 23 igg which I've read is Lyme specific. Also my c4a was elevated which she noted could come from Lyme or mold. My follow up appointment is In a week.

Also in the last year all the blood work I've done has showed up fine other then these things.
1 very low testestrone.
2 very low vitamin d
3 blood in urine
4 high uric acid. They said it could cause gout
5 low fsh hormone

But if it was Lyme I don't understand why I had that brain fog before the tick bites & then it just became chronic after.

I'm really in need some of help & advice. My world has been turned upside down. I haven't felt right in so long that I don't know what it's like to feel right & healthy.
Please help

Post Edited (Redwhiteblue) : 6/2/2018 7:06:23 PM (GMT-6)

Welcome redwhiteblue

Yes band 23 is Lyme specific and added to your symptoms/tick bite - sounds like you have LD.


It’s possible you had a prior tick bite but didn’t see the tick or evidence - FYI many people don’t (I never saw one)
The more recent bite could have added to your bacterial load and that’s why your symptoms reappeared.

Low vitamin d is very common with Lyme patients.

Could you see the blood in the urine or was it something picked up with a urine test (microscopic blood)

My advice is to see a LL Dr - if you want to treat with nonpharma - then a LLND or with abx then a LLMD.

Redwhiteblue said...
Thank you both for the replies.

Girlie, no I could not see the blood it was picked up in my urine sample.

As bad as Lyme disease is I just want a name for whatever is ruining my life so I can began treating. Do you think I can be symptom free?

I just find it hard to believe I could ever get better. I have gotten so use to feeling so bad everyday. The fatigue is unbearable at times.

I also had blood in my urine - more than once - no follow up was done.
Is your dr looking into it?

Yes I think you can be symptom free - but it’s a long haul - not a quick easy fix.
Except for a few breaks I have been treating with a LL dr since end of July 2014.
I’m not symptom free yet - I have/had close to 40 symptoms and am down to about 6 major ones that are with me most days and a few more minor ones that come and go.

I’m not giving up yet.

Redwhiteblue said...
No my dr isn't looking into it. I guess I should get it looked at again.
I'm glad to hear you're making progress. I just want my brain and train of thought back. Don't get me wrong the fatigue is awful but if I could just get my concentration back then that would help so much!! There's nothing worse then feeling like you're losing your mind.

Just recently I have had a change for the better with my brain.
I haven’t been able to remember what day of the week it is when I wake up in the morning.
I can now!!
This is a recent improvement.
The date - that’s another issue.

Yes this can happen from Lyme and the co-infections.

You should keep a daily journal of your symptoms and the intensity.

Note any new treatments, changes etc.

Detoxing, eating gluten free, sugar free is important to help you get better.

Drinking water with lemon juice during the day is helpful.

If your interested in reading more about Lyme and co-infections and what the infections are doing in your body, I would Stephen Buhner's books, from"Healing Lyme" 2nd edition to his co infection books.

They do have herbal protocols recommended in them ,but even if you don't choose that path, the information about these infections is so important to read.

I understand what you are going through, its very strange what these infections can do to us.

I had many Neuro symptoms like others here. The brain fog, cognitive impairment etc...has mostly all gone away with treatment.

It feels so good when the brain fog is gone. You can get there but like Girlie said, it can take time and proper treatment.

Hang in there and I wish you the best of healing.

It sounds like you're on the right path. Hopefully with treatment you will start feeling better. Brain fog is awful. I've been treating for a year, and a month or two ago I had my first day free of brain fog, and I cried. There are ups and downs, but that symptom is so much better now. So have hope! I'm glad you have found a LLMD. Keep us updated!

Most chronically ill people i see have 5 -12 pathogens causing their woes....likely you have borrelia and others .
If you had a vidy gamers diet ...that drunk feeling could be alcohol byproduct of a severe candida infection...is ur tounge white? Bloated belly?

Walking by faith, I have not taken that test but we did discussed the possibility of being exposed to mold which could have triggered the Lyme.

I haven't lived in that apartment in nearly 5 months and don't notice any difference after moving.

Bluelyme, I've began a paleo diet & ive never heard of a visu gamers diet. I've heard paleo is good for Lyme. & no I don't have a white tongue or bloated belly.

Notime4lyme, I can drive & feel like I seem fine to the outside world but I'm struggling. I look fine & am a fantastic pretender. I'm just tired of pretending I'm fine and am ready for my life back.

For me it seems like anxiety makes things worse.

I feel like my thinking isn't the same anymore, like I am crazy. I wake up everyday just feeling off, like I didn't get enough sleep even though I slept 9+ hours. Then my judgements just feels off and decision making isn't their. I have turned into the most forgetful person I know. I lose something every 30 minutes..
I can't do any outside work or activities for the sun!! Not because it's hot, but because I can't open my eye balls. I guess you could call that light sensitivity.. I am now the most hateful person alive & nobody understands they just think I'm being a prick. When I don't feel good I don't feel like talking or doing anything and nobody understand.....

Anywayssssss I know I'm rambling. Hard not to with this awful disease.

Lvg123 said...
It sounds like Lyme but that's not enough to make a diagnosis. I would rule out all other diseases first. Late stage syphilis is similar to Lyme. It could be HIV. It could be Multiple Sclerosis etc. There are many diseases out there so as long as you get thoroughly checked and you don't have anything else then you can conclude Lyme. You don't want to do the treatment and never get well because you were misdiagnosed.

Well band 23 is Lyme specific and there’s a history of tick bites.

I would not accept an MS diagnosis and not treat lyme - but it would be easy to rule out hiv and Syphillis.
MS is basically symptoms plus lesions on he brain which could be Lyme.

Redwhite&blue said...
Let me ask you this. I kinda explained it earlier but I'm gonna go into detail. So my vision is just off... I kinda feel as if I'm a bit drunk. Like I'm not dizzy, or I'm not lightheaded but I'm somewhere in between. Growing up I would stay up all night & play video games & sometimes even stay up 2 days in a row, just because I had no responsibility. That feeling of being so sleep deprived kinda reminds me of how I feel. I guess it's just my brain being so fatigued.. does any of this sound familer?
.

doritos and mountain dew are staples of some video game players....i had a on a boat feeling when the nerves to my ears began to get affected by the pathogens ...garlic earoil and ozone helped with treatment ...took 9 months for vertigo to subside ....