I got Lymed in Georgia!

Allen's story!
Hello, first let me start by saying that I'm not positive when I contracted it or even positive even now that I have it! I have ALL of the symptoms, signs of it, so I figured I will tell y'all my story and ask for help and see what y'all say.

I have been fighting this since I was about 19-20 years old and I'm now 45! I was an avid deer hunter back in my early years and can remember pulling off quiet a few ticks that had attached to me, some had just attached and there was 1 or 2 that was attached maybe a day or so before I found them.

And, I can recall that out of all of them there was at least 2 bites that it took a while for them to heal. No, I didn't go to any doctor as I hated doctors! For me to go to a Doctor, I would have to be about dead! And, we'll get to that soon!

Any way, when I was around 20 years old I caught what I thought was the flu bug but it turned into a sore throat, that turned into strep throat, that turned into severe strep or something!
My tonsils and throat swollen up so bad, my lymph nodes in my neck was so sore and swollen too that they had red veins running down towards my chest. I remember feeling so bad that I couldn't even stand hardly or walk, my equilibrium was totally gone! I some how made it home from work, crawled into bed and the last thing I remember doing was praying to God and saying...."God, Either I'm going to get better as you have something more for me to do, or I'm going to die."

The next thing I recall was me waking up a few days later, thirsty as all get out but the one thing I immediately knew was that I was feeling just a little better! I crawled out of bed, got me something to drink and drank and drank, used the bathroom and I could tell that I had indeed turned the corner with whatever it was that I had had, I was getting better! To this day I'm not sure how long I was out of it laying in my room! I can guess about 2 to 3 days?

Within a few days I was almost back to myself BUT, and yes here's the but part! about a week or so after that incident happened my hair started to fall out! Not only that but the skin on the palms of my hands and feet started to shed! I could run my fingers thru my hair and come out with a wad of hair! I could start peeling my skin off in big pieces and the new skin under neath was like a baby's skin but it was SO SENSITIVE!
I couldn't hold anything warmer than my body temp. I couldn't hardly walk on my feet! It was bad until the new skin toughened back up!

I found out later it was due to the toxins that was released into my body from whatever, I was/am very lucky to have survived. But, this was just the beginning of my suffering!

Shortly after this, I had a red rash appear on my neck that soon spread to cover all of my neck and most of my chest. It stayed that way for probably about 3 years. The rash from time to time was a little irritable, it would itch a little, be a little chalky like on top. Then one day I went to the beach, got into the water and stayed in the water all day, believe it or not but after that, the rash just went away!

But, then I noticed that I had polyps in my throat and not only that I had cysts that started forming all around my scalp. Some were bigger than others. Over the years I would actually cut and drain some of them myself but it would do no good, within a month or so they would fill right back up and even get bigger in size.

Most all of them are filled with a liquid like stuff, when I would lance them yellow like puss would come out. When I got married my wife and I started to lance them and it was all I could do to get her to help. The first time she help she like to have fainted! It's really not for the faint at heart! Seriously! There is one though that is not liquid, it is hard almost like a bone. I made a mistake once to try and lance it, when I did no liquid came out what did was like tiny pieces of hard like bone but it wasn't. Afterwards, I got ill for a few days. So, I haven't lanced any of them since.

After the rash incident, I had incidents with my heart. Of course I never seeked any medical help but it felt as if my heart was fluttering? It was enough to scare me but not harm me. Them incidents happened several times over a couple of years.
Now, I think I may have gotten bite back in/around 1989 in Georgia, the throat incident happened around that same time period. Rash started around 1990-1991 and lasted thru 1993, the cysts & polyps started around 1991-1992 and I still have them today.

Around 1994 I started fighting a battle of highs and lows of depression and other unexplained mental things that I can not explain to this day! I think may be associated to this lyme disease.
I also started having sleep disorders that has only gotten worse, severely worse over time!
Here's the kicker, I started suffering from something that I didn't understand with my feet. Every morning when I would get out of bed I couldn't walk! I couldn't put any pressure on my feet for almost an hour!

Then it moved to my back! And it moved with a vengeance! Man, I tell you! I thought I was dying! I couldn't move, I needed help to get out of bed, to get dressed, it would take me 2 hours every morning to work my back before it would loosen up just so I could do anything!

It was then that my wife convinced me to finally go to see a doctor! That is where my battles has begun!
The first doctor I went to, I had to convince him to order a MRI of my back, he finally agreed. I got it and came back, he told me that I had a severely herniated disc at my T3-T4 that was pressing against my spinal cord, and that I had a hemangioma in my spine at my T8-T9 that I needed to see a spine specialist.

I didn't have any insurance, self employed and I had no idea of what was to come of this all but boy was I to find out! Now, I still haven't even heard of lyme disease as a possibility! Never even crossed my mind!
And, I still don't know YET, that I have it but I truly believe that is what all these symptoms and problems that I have suffered through just has to be as all of these doctors that I have been to to date has so far been wrong and mis-diagnosed me!

But, yes there is more! Sadly there is more.
After me going around to I can't recall how many spine doctors and flat out being rejected for not having insurance, I had to settle with a pain management doctor.
He has been good to me and it has helped me cope with the terrible pain but it has only gotten worse!

Last year it took a terrible turn for the worse! May-June of 2015 I started having issues with my abdomen/stomach, diarrhea and just hurting all around in my abdomen and my kidneys. Then it got worse, and then it turned to nausea, headaches that then turned to migraines, hurting in my back so bad that it felt like it was breaking in half. This lasted for a couple of days of misery, the migraines & pain only got worse! I suffered for as long as I could take it until I couldn't take it any more and I finally let my wife take me to the hospital.
They did some tests and finally a spinal tap to where they quarantined me as I had viral meningitis.

They treated me for about a week, I was released and I felt a little better. The first day I was released I was walking to the bathroom and I don't know what happened but I must of blacked out as I fell straight down on my left foot and when I did I heard something pop in it. It turned black and blue, I couldn't walk on it for about a month and it took it well over a year for it to finally heal up!

Then Dec. 2015 out of the blue, not like in June where it creep up on me! In Dec. it hit me all in just one afternoon! By that night I was at the emergency room again with Meningitis! Again, spinal tap! This time they called it Mollares Meningitis? But, even the infectious disease doctor said to me that she didn't think that it was that. Since then, I've been battling severe migraines, memory loss, vision loss, ringing in my ears, and I mean bad ringing in my ears!

My kidneys hurt almost daily, my urine is extremely dark most of the time and a lot of the times it is very cloudy!
But, yes, again, here we go again with another but!
And, this one makes me want to cry!

Seriously, whew, about 3 months ago I started having problems with my arms. More in my right arm than my left and guess what, I'm right handed! It started in my shoulder area almost in the joints but at the same time it's in the nerves and muscles! It has weaked my muscles to where they will tear! I tore my bi-cept from doing nothing but pulling my arm back quick! It hurts if I turn my arm even remotely fast. I can not raise my right arm and it has moved into my left arm now.
Tendernous, hurting even to the touch that progressed into a terrible pain beyond your wildest imagination! Seriously, I have done tried suicide once and failed! This pain is one that NO pain meds will touch! It travels down your nerves and bones! It is....100 times worse than a cramp because a cramp you can move and get some kind of relief, this pain you can not. Imagine something that wont allow you to sleep and if you try it awakens you with such immense pain that you have never felt in your life! Pain scale of 1-10 doesn't even touch this level! 10 is a cake walk to this pain! They would need to move that chart up to at least a 15!

Only time can make this pain subside! It may last 10-20 minutes! It's worst at nights for me! Especially when I lay down to try and sleep. Then when I take my sleep meds and do go to sleep and my arms I can't move but in a certain position or it will trigger that terrible pain, I start to sleep and move them! I instantly awake in that pain! You can only imagine!

So, I ask? I have asked my so-called doctors and my spine doctor thinks it's my spine?
After doing my own research and a lot of thinking I truly believe I have lyme disease!
And, it's killing me!
What else could be causing all of these things?

welcome sorry , consider bvt ,and kratom and cordyalsis for pain managment..it gets better ...mine went from oh my lord kill me to ok i can live with this in 12 months...

i read this before i knew what was ahead of me ...it is written by joni tada a lady who got paralyzed justin and christie recommend it all who question suffering

https://www.amazon.com/When-Weeps-Joni-Eareckson-Tada/dp/0310238358

Post Edited (bluelyme) : 12/15/2016 10:51:01 PM (GMT-7)

Welcome to our community, Astew!

I think you are wise to question if Lyme disease is the cause to your suffering.
Your history of tick bites and symptoms certainly could be attributed to lyme.

Have you ever been tested for lyme disease?
You can order a test kit from Igenex Lab in California...and have a Dr. sign the lab req.
For $210 you can get the Lyme Western Blot IgM and IgG done.

Here is the Igenex website:



www.igenex.com/Website/

You just call them...and they will send you the kit. The tests I recommended earlier are #188 and #189 on the form.

For lyme disease treatment...you should seek out a Lyme Literate Dr. (LLMD) - as you will want someone who is educated in the diagnosis and treatment of tick-borne illness - and someone who is an ILADS member. (International Lyme and Associated Diseases Society)

Also, Julymorning, with your complaints. My Mom had a lot of very similar problems with her shins, I mean identical as you are describing with yours! Here's what I remember with my mom, she had a doctor that was prescribing her some wrong medications. I'm not saying that you do, please don't take this wrong, this is only for advise in a way to check to see if it may be helpful. Are you taking any water pills? Do you eat a high sodium diet? Have you tried eating a banana before bed?

If your taking water pills they can cause terrible cramps and they did in my mom! Another thing is if you consume higher levels of sodium, that to can cause cramps. If your potassium level is low, that too can cause cramps. Blood work can check for these things.

But, it never hurts to try eating a banana before bedtime every night and see if that might help at all.
I hope that helps you.

astew, I think you have many of us here speechless. Lyme disease and the co-infections we are used to can be horrible.

Every once in a while you hear on here, or watch a video of someone else that may have a different experience than some of us. A terrible, heart wrenching years of symptoms.

I for one am left scratching my head wondering if it's probably something in addition is at play here. Everything you describe sounds bacterial with viral and perhaps some other unknown invading organism at work in you.

Like something you might get in a third world country jungle or swamp. I don't mean to say that to alarm you at all.

There has to be some kind of happy medium between those that run to a dr. for everything, and those like yourself that have to be "about dead". I can totally empathize with you on that, but I think you reached that point a few times!

This probably going to make some readers choke in surprise, but you've never handled any radioactive material, have you? Or been exposed to dioxin?

Post Edited (julymorning) : 12/17/2016 5:46:20 PM (GMT-7)

Just wanted to say welcome to the community! I'd highly recommend taking this screening tool designed by a Dr. that has helped thousands of patients.
www.tiredoflyme.com/horowitz-lyme-msids-questionnaire.html
It convinced me to start treatment, then I invested in an IGEN-X test.
Let your recovery begin...

astew101 said...
Also, Julymorning, with your complaints. My Mom had a lot of very similar problems with her shins, I mean identical as you are describing with yours! Here's what I remember with my mom, she had a doctor that was prescribing her some wrong medications. I'm not saying that you do, please don't take this wrong, this is only for advise in a way to check to see if it may be helpful. Are you taking any water pills? Do you eat a high sodium diet? Have you tried eating a banana before bed?

If your taking water pills they can cause terrible cramps and they did in my mom! Another thing is if you consume higher levels of sodium, that to can cause cramps. If your potassium level is low, that too can cause cramps. Blood work can check for these things.

But, it never hurts to try eating a banana before bedtime every night and see if that might help at all.
I hope that helps you.

I have been on a water pill with another medication for High Blood Pressure, this is true. I actually have a gentle one, Hydrochlorothiazide and I have been taking that daily. I know that you lose potassium with water leaving the body.

That being said, at this moment I cannot remember if I had started taking the water pill when those muscle spasms started happening. It's been over 4 years and I usually only have them in the Winter, which is related to the fact that cold weather makes me pee more.

Bananas never helped, I tried.

I do have prescribed potassium pills but have strict orders to only take them with my second 'water pill' lasix, which intent is on removing excess fluids from around my heart. I very rarely take them, it is something I take only if absolutely necessary. And since reading the dangerous action of medications that deliberately remove fluid from my cells, I cringe when I do have to take it. (lasix)

Oh, and I try to avoid excess sodium, but I get to craving it sometimes and may binge (for me) a couple of nights in a row every few months.