lyme disease story

Allen’s Story of Chronic Illness, Lyme or something else?

lyme disease story

A reader sent in this story, not sure if he has Lyme disease or something else. After talking to Allen, I wanted to post this to get some more opinions and so Allen could meet others who might be gong through some similar issues. So if you would like, leave a comment below for Allen. Thanks!  ~ Lisa Hilton

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 or more 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. When I was 5 I fell from a rock pile and busted my head pretty bad and needed stitches, my mom took me to the family doctor who first strapped my down to a table/gurney. That didn’t work as I soon came out of it, they then had to hold me down. That took a toll on me as a child and has stayed with me as an adult, so it takes a lot for me to go to a doctor! That has really hurt my health as a whole and probably has put me where I’m at now. 🙁

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 looking back now all of this may be associated to 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!

I had to slowly work my feet to put pressure on them to get them use to my weight so I could walk.

During all of this time I smoked marijuana, I eventually quit smoking around 2009 or so and that is when my health really took a turn for the worse!

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, or I couldn’t afford them, 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 over time 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 & neck so bad that it felt like it was breaking in half. This lasted for a couple of days of misery, the migraines, pain and nausea and vomiting 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 meningitis.
In my records they diagnosed me with Bacteria Meningitis & Viral Meningitis. I really think that they didn’t know which it was but they finally settled on viral.

They treated me for about a week, I got better and was released. 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 so I could walk normally on it! I still have pain it in!

Then, about 6 months later in Dec. 2015 out of the blue, not like in June where it crept up on me! In Dec. it hit me all in just one afternoon! I had terrible migraines, hurting terribly in my back and by that night I was back at the emergency room again. They done another spinal tap and again they said I had viral Meningitis!

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. The doctor done a complete lab screen on my spinal fluid and could only find herpes semplex virus in it which is the virus that causes cold cores and most of us has it.

She treated me for it, she wanted to give me a two week treatment of Acyclovir but within a week of receiving it I got better so she decided to release me and have me come back once a day to the hospital for the last week of treatment.

I did and the very first IV treatment a new nurse came in to give it to me. She evidently did NOT know how to administer it correctly and gave it to me wrong! Which in turn it went directly to my Kidneys and crystallized!

It put me in Acute Renal Failure! I complained while this nurse was giving me the antibiotic but she ignored me, I even noticed that she was giving me ONLY the antibiotic and NOT the saline drip with it, see, it HAS to be diluted. All the other times I was given it I got BOTH bags that was brought in to my room, this time the nurse was ONLY giving me the antibiotic. I asked her about it and she said that it was already diluted and the saline drip was only to flush the lines!

I had no reason not to believe her other than shortly after she started giving me the antibiotic I started hurting in my abdomen/kidney areas, I informed her of this and she said it was nothing. When she came back in to unhook me after all the antibiotic was given, I again complained of pain. I told the nurse, her name is RLinda, she works at the Mayo Clinic in Waycross, Ga. and yet again she ignored me! She simply unhooked me, handed me some release papers to sign, told me to sign them and I could go home.

As I looked over these papers, at the top of 1 of them was where someone could write in my current pain level from 1 thru 10, 1 being the least to 10 being the worst. RLinda had already written in my pain level as a 1!

I asked her ow did she come up with that number as my pain level? RLinda again asked, oh, I can scratch thru that number, what level would you rate your current pain level at? I told her easily an 6 to a 8!
She said, Okay, she will make a note of that for me to please sign it at the bottom and I could go. So, I did and I left!

Shortly after my pain got really bad! I tried to lay down and when I did it felt as if I had sand in my lungs, every breath I would take I couldn’t take in as much as in my next breath! Luckily I had some medicine that I knew would help open my lungs so I took it and within an hour I felt well enough to get back up and do some research online as to what was going on.

I knew the drug, I knew she had administered it wrong, so I started by going to the manufacturers website.

In it I found a complete form as to how the drug was to administered and indeed she had administered it wrong! I also found out why I was hurting as when it’s administered wrong it crystallizes in the kidneys and puts the patient in Acute Renal Failure!
I printed the information off and back to the hospital I went! I was treated horribly at this hospital! They ignored how sick I was, matter of fact, they wanted to take me back and hook me up for another round of the antibiotic, they ignored the information that I had, they ignored that I had done swollen up and could barely walk! It took me asking for their superiors and 1 of them coming out taking 1 look at me and her telling them to rush me to the ER before I was even treated!

Even then at the ER they treated me poorly! The ER doctor refused to listen or believe me about what I told him as to what happened to me by 1 of the hospital’s own nurses! I think that is why I was treated so badly!

While I was laying on the examining table waiting to get help, the ER doctor informed me that they would have to run some tests to see what was going on with me and if it was my kidneys, which he didn’t believe it was with my medical history, he would take care of me.
They weighed me each time I came into this hospital, I just want everyone to know that I put on over 20 lbs of fluids in less than 24 hours! My legs was so swollen I could barely walk! I was in so much pain in my abdomen area that I can not explain!

After they done their tests, they proved that indeed I was in Acute Real Failure! During this time of me laying on this examining table in the ER, my wife had to go to our vehicle in the parking lot. While outside she bumped into the Infectious disease doctor whom had ordered this antibiotic, my wife told her that I was now back in the ER and the doctor in formed her that she knew. After them talking for a bit, the doctor finally agreed to come in and talk to me.

When she came in I told her about how this Nurse RLinda had administered the antibiotic wrong, I showed her the papers I had printed off, she agreed that indeed that was what happened! The doctor told me that the nurse had indeed administered it wrong and she was going to write her up for it! The doctor went on to say that this incident was not the only one, that the Mayo Hospital was leaving this hospital because of incidents like this and the staff being not trained well! And, indeed about 6 months later the Mayo hospital is in the process of leaving. It’s been advertised on the radio and all.

But, I got put back in intensive care for a week, they had to give me a lot of fluids thru my IV to dissolve the crystals in my Kidneys! Since then I have had issues with my Kidneys and it has been put on my medical records that I have kidney problems, even though it was the hospitals fault and NOT mine that caused this!

i have talked to a few lawyers about this and none will touch it!

They say that I have to have existing kidney damage before they will touch the case! It doesn’t matter to any of them about how much I suffered at the hands of that so called Nurse RLinda, or how I was treated by the hospital, or how I had to be treated in ICU for another WEEK and I got billed for it! None of that matters! How is that MY fault! If ONLY that so-called nurse RLinda had done her Job correctly, if she had ONLY listened to my when I complained about the pain, if she had only listened when I told her about how every time before I always got BOTH bags of the Antibiotic and Saline before! But, NO and now I’m the victim and Now I’m the one that will suffer even more from this terrible disease and from this terrible nurse and hospital that has only made my life so much more miserable!

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 weakened my muscles to where they will tear! I tore my bicep 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 barely above my head and it has moved into my left arm now.

Tender-nous, 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?

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