Possible 8 year Undiagnosed Lyme disease.

I've been laying on an elevated bed for the past hour or so, researching esophagitis and the causes, what to avoid etc, and what I'm reading, can't help but remind me of the last 7 years of my life, spent feeling sick, and just generally not well.

It started at college after summer break, one day I randomly had a panic attack, and I had never had them before. Went to the ER etc they told me i was fine and sent me home. The next day I woke up with a flu so fierce it ended up sending me home and dropping me out of college. (Lon story short I was sick for a very long time, no doctors could find any evidence, not even chronic illness specialist at university of Michigan.) only real markers are a high microsomes like antibody marker, and recently my rheumatoid factor has been marked at 1 point above normal. I cannot tell you for certain that I've ever been tested for Lyme, and definitely not throughly.) basically after a while they told me it was all in my head.

Now, I had been camping probably a month before this happened, where a person who slept in the same tent as me, had pulledat least two or three ticks off of himself the next day, in the shower... And this always haunted me.

All the symptoms line up. Headaches, vertigo/dizziness, cognitive problems, anxiety, and now, ever increasingly, esophagus problems (current intense pain at this very moment)

For the last few years I've just been dealing with everything from a mental health stand point and treating it all as anxiety and working to cope with it, (without medication, and am making progress) but at a lot of times,
I just don't feel well. I haven't since that day 7 some years ago.

Can anyone help me?

My heart breaks for you. It definitely sounds like could be Lyme. A sudden panic attack like stiff neck is a telltale symptom of Lyme. I have many times alerted people to this and it has turned out to be Lyme. I myself had severe sudden anxiety and ended up in ER only to be dismissed for many years.

The best advice other than to get to an LLMD is to believe in yourself and not what doctors tell you. It will be frustrating but putting yourself first and getting to the bottom of it will not be easy. You have to be persistent and move past one not looking to truly help you.

Lyme is not accepted by the medical community as a serious health threat YET. We are getting there. That being said, testing is very VERY flawed. You have to find a dr that listens to the criteria that Lyme is supposed to be a CLINICAL diagnosis only. That means, based on symptoms, not relying on tests results.

Once you find someone to listen to you, patience and pampering will be your best bet while you treat slowly and fervently. If it's been many years, as it had been for many of us, it will take a while to get to the bacteria that is in every nook and cranny of your body.

But believe me, it's possible and doable and sooooo worth it. You can really get well and feel wonderful again. I did it!

Best of luck to you!

Hi Theforerunner, welcome to our community! I'm glad you have found us...as it does sound like you could have LD.
This is a very supportive and knowledgeable group of people here.

Since, you have no answers for what's causing your symptoms - 7 years later...I think it's a good idea to question whether you have LD. (Based on your exposure to ticks, and symptoms)

If you want help finding a Lyme Literate Dr. (LLMD), start a new thread titled: "Looking for LLMD in/near_________" and insert your city/town and State.

You can also order an Igenex test kit and get a Dr. to sign the req form for the blood draw. The best test would be the Lyme Western Blot IgM and IgG. Then take the results to your first LLMD appointment.

Thank you all for the responses,

@Springsjean Its funny that you mention the "suden neck stiffness panic attack" because thats exactly what happened to me. I walked into a gas station, saw a person from behind who looked like someone i knew, and when they turned around, they were unfamiliar, and in that instant, it had felt like someone had hit me in theback of the neck with a 2x4 and thats when the panic hit. (felt like my tongue disapeared, heart rate etc)

thats so erie that you menion the neck thing. The only doctor to pick up on that was a sleep study specialist who said "maybe you had meningitis". I do have some joint tenderness, like my right knee (the large tendon under the cap) never seems to heal from exercise, and i do have periodic back pain (at 27) I have this thumb that is easily stressed and becomes painful and sore with little instigation. but nothing really "overall" or "systemic"

I think if anything, my symptoms (for the most of the 7 years, except for the very begining where i had flu like symptoms for a period of about a month and then just stomach pain for 6 months) line up more with the systemic nurlogical symptoms. Like the headaches, the dizziness, the brain fog, cognitive problems, and not to mention the most predominant, the anxiety and depression. I also read somewhere, someone spoke of this "vibration in their head" Which i totally understand, and get every once in a while. Its like someone hits a tuning fork and then touches it to the base of my skull??

the anxiety has been so bad at times that i have periods of being fully recluse, where i dont even leave my house, and going to the grocery store down the street was enough to give me panic attacks. I have since somewhat recovere but my anxiety is still ever present, no matter its level of severity. (this makes me nervous about going to see one of these lyme disease specialists you guys speak of. I have real trouble and anxiety with traveling.) And i have done my fair share of outof town trips to specials to describe my whole 8 year history of symptoms to sme new doctor who thinks im crazy.

(I also have apineal cyst that is 1.5 cm, that some people and very few doctors think can be symptomatic and cause "some" of the problems i suffer from, but generally, teh medical comunity dismisses them as asymptomatic and common.)

I have really spent the last few years not paying attention to any of this, out of mind, mentality about my health. And focusing on my mother who just beat her first battle with lung cancer.

I spent so many years looking for an answer and just kind of gave up hope that i would be able to fin something that would helpe me, something that causes all this that is treatable. With the pineal cyst, i got, no real answer. just, "it might be causing this" plus the added fear of "woah i have a "tumor" what if it gets worse"

THe last couple winters i havent been able to stop my skin from burning, and even my primary oesnt know whats causing it. I stopped using Tide, shampoo, and any soap other than this natural stuff from the organic food store. an sometimes thats still isnt enough to stop it. something about the summer makes it happen way less, but winter is terrible.


The only two tests that showed anything (microsomal antibodies and rheumatoid factor[which was 15, then 12 within 3 months , 14 is normal range]) just keep popping up in the back of my mind. MY doctor said i could go see a rhumetologist if i wanted to but idk... it just doesnt sound like rhuemetoid arthritis to me

Can i still have lyme disease even if im not like walking around like an old man and m joints arent swollen and constantly hurting?

Hi Theforerunner!

Welcome to our community! I'm so glad you kept looking for more information and found us too!

As others have said, if you haven't ​yet​, it would be helpful for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of important information, symptom lists, helpful links and pdf's, how to detox when one has these infections, information on probiotics and much more.​

There are no real specific symptoms that anyone must have in order to have Lyme - the symptoms are quite varied. Lyme patients come in a wide variety of shapes. sizes, ages, activity levels and living situations (meaning city vs country).



For information on finding a​n ILADS ​(International Lyme and Associated Diseases Society)​ trained​ Lyme Literate Medical Doctor(LLMD) in your area, you can send me an email by clicking on my screen name or the small blue envelope under my screen name. I may have contact information for some LLMD's in your area as well.​ ​Please include your state and area that you would like to find a LLMD in and I will see how close I can get to your location.​


You can start a new thread titled something like "Looking for LLMD in the (insert the nearest larger city & state) area". Members can email you about the LLMD's that they see in that area if you have your email enabled. We don't allow doctors names to be posted though.


You can also email the Tick-Borne Disease Alliance at​[​​url]​medicalinfo@tbdalliance.org​ for LLMD referrals and you can go to ​tbdalliance.org​​ to learn more about these infections.


You can also go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74​​


ILADS also has their own referral system too:
ilads.org/ilads_media/physician-referral/

​ You will want to find an ILADS (International Lyme And Associated Diseases Society) trained doctor, as ID Docs (Infectious Disease Doctors) believe Lyme is hard to catch and easy to treat, and don't believe in the reality of chronic Lyme. Go to the ILADS site to read the new (2014) Treatment guidelines to get you started on your healing journey:
http://www.ilads.org/lyme/treatment-guideline.php

Stress can ramp up the symptoms...and sometimes it even brings on a relapse for people who have been asymptomatic for several years.

Just wanted to let you know that I had the feeling of a lump in my throat, for many months. It was one of my first symptoms - before I had a lot of symptoms.

I went to an ENT specialist and he put the tube with a camera through my nose down my throat to look and see if there was irritation...and watched me swallow a cookie and also a drink. (I also had trouble swallowing stuff...it would kind of just sit there) he found nothing wrong, no irritation, no lump, nothing.

It slowly went away with treatment...

I forgot to mention - I had the barium swallow X-ray too and it didn't show anything.
I didn't have any burning in my throat or any heartburn so I didn't think it was acid reflux.

Lyme causes a lot of issues in our bodies.

Does treatment make it go away? Well, the lump in my throat is gone...it comes back now and then for a day or two when I herx. I don't have trouble swallowing anymore, either...no food catching up, and no choking on my spit. So, for me, yes treatment made it go away.
And it will for you too, unless you have something else going on...that is why we need to get these things checked out...
Question: Have you had your thyroid checked?

MY doctor here in my small town ordered a lyme disease test a couple months back, after i posted this, and he said it was negative. At first i questioned whether or not it would be considered conclusive but i guess i just gave up hope.

Months went by and i was doing okay, but winter is upon and im struggling with the burning skin, as well as the stomach problems, and the acute anxiety again.

A recent vitamin D test has shown that im deficient, so its possible that thats causing my burning skin or whatever, but i dont see how that would cause all the other problems.

Should i be trying to contact a ILAD doctor or whatever? is there other tests that can be done? Do you think any of them will work with me and my inability to travel? (crippling agorophobia)

theforerunner said...
MY doctor here in my small town ordered a lyme disease test a couple months back, after i posted this, and he said it was negative.

I had 3 Lyme ELISA negative tests and had spirochetes running in my blood. If you have this for a long time the body will stop producing antibodies. The standard test checks for antibodies and it will return negative. It's really a disaster, when they designed that test nobody was aware of the fact lyme, left untreated, is immunosupressive and it makes the immune system amnesic (they discovered it this year), so that it cannot remember how to attack the disease. So the stock test is useless for chronic patients.

Go get yourself tested to IgeneX, see what Girlie says about what tests to take, if you have lyme in your condition you should consider yourself lucky, with a bit of treatment you will surely have a much better life quality than you have now. You wont be cured, but you will be able to live almost normal life.

To really see how diverse this disease can be, when you have time watch this please
/www.youtube.com/watch?v=O9a-2Nb2sbk

There is no real way to dismiss lyme unless you do some highly sensitive tests from a serious lab like IgeneX and they say no way you have it. Even then there might be some false negatives, so you could re-do the test in a couple of months.

Good luck

Post Edited (mpostelnicu) : 12/2/2015 4:41:53 AM (GMT-7)

I'm really glad I checked this again. I had a second (simple small town test) for Lyme again and t came back negative. Definitely haven't had an Elisa or ingenx test or anything. Traveling out of my city is really difficult for me. Road trips out of town send me into panic attacks and stuff, and I've been on trips to Ann Arbor for university of Michigan (testing for diseases and such to explain all this) and I was pretty miserable for it all.

I have been thinking about Lyme again lately because I bumped into a girl at the grocery store who was staring at some green drink and I told her it tastes gross, but she said she liked it but she couldn't have what was in it. And continued to explain that she was diagnosed with Lyme. Something about going to Iowa with her friend who has Lyme and being diagnosed too.

I really need to find a doctor who can work with my doctor here to order these tests. My burning skin has been somewhat subsided lately but I just spent the last couple mo the fighting bronchitis and possible pneumonia. My dad was in the hospital for 3 days with it and my mom had it too. All I was diagnosed with was bronchitis but I'm still coughing stuff up and I got it around thanksgiving. Which really makes sense with all the immunosupression I've been reading about this morning.

Also, I'm suddenly (allergic?) to eggs. If I eat them, I get s lump in my throat and feels like something is stuck maybe. So I quit eating them. And it's a for sure thing, every time I eat them. And it's in the top of my throat by my trachea and my doctor was like "well sometimes egg is hard to swallow for people with gerd" (which I have digestive issues too.

But I've given up spicey foods and sauces, practically given up all dairy because (I never used to be lactose intolerant) makes my guts hurt, makes me feel sickly and in pretty sure either brings on the burning skin, or just makes it worse. But as far as that goes I've had a good couple months without burning skin. And I haven't heard of dairy allergies causing burning skin with zero rash, so I'm totally beginning to believe it's nerve/nuropathy and my doctor even mentioned that it could possibly be MS. (Go figure right?) isn't Lyme often misdiagnosed as ms?

Thanks for the replies guys. I've been terrible at keeping up at this, and on top of my own health lately. It doesn't help that I don't get emails about these replies or anything. I even had to google my own user name and the website to find this post.

Are you sure you have subscribed to this thread? There's a button on the top of your first post in this thread. That should send emails to you to let you know that there has been at least one response to this post. You must follow the link provided in order to continue to get email notifications for this thread.

While the symptoms you have make no sense by themselves, something like Lyme disease explains it all. A regular MD won't know what to do with you though, so you will need to do a lot of the "leg work" yourself even if you have your GP work with a LLMD as you will have to be sure that they are following what they are told - without their own additions or eliminations from the protocols. I would encourage you to get to an ILADS trained LLMD.

Thanks for the help subscribing, I dis lily just put an icon on my phone for it.

All I know is that the summer before I got really sick and couldn't recover, I was sleeping in a tent with a friend who claimed to pull three ticks off of him in the shower the next day. And a months later I was super sick. Idk how long it takes to manifest or whatever but I had exposure to ticks, at least at least in the same season that it all started.