Do I Have Lymes Disease???

Hello Everyone! I am a 24 year old male who has been experiencing very strange symptoms over the past 8 years that has been both debilitating and frustrating both physically and mentally! I have been to many doctors and told them about my suddenly strange/startling symptoms with basically no answers besides that I am crazy and it is all in my head! After doing some research and viewing threads and posts on this website, I figured this would be a great place to start and get some advice from people who are experiencing the same things that I am and maybe I will recieve some help.

First let me thank you for having such a great forum with readers and listeners who are able to give vital feedback and advice from their situations. I have been doing a lot of reading in both the Lymes and the Fibromyalgia (and also arthritis) forums because these  chronic illnesses seem to be the ones that the doctors and myself feel I may have. Next I will briefly explain periods throughout my life, explain how and when I was bitten by a tick, and the ongoing symptoms that I have been experiencing that are supposedly "All In My Head", and some of the test results that I have. 

Growing up as a child I dreamed that I could accomplish almost anything. Good health, being a good athlete, getting good grades, being a productive person, and being able to relate with others socially, etc. was something that I took for granted. Now, at the age of 24, I feel that everyday my crippling symptoms are continuing to become worse and that I am becoming disabled. 

When I was 16 years old my family and I went on a vacation to visit my Grandma, who lives on 100 acres of forrest located near the small coastal town of Point Arena in Mendocino County. Mendocino County is located in Northern California and is an absolutely beautiful area with all kinds of wildlife and redwood forrests and is a "known" area for lymes disease. While vacationing my brothers and I roamed the wild forrests and played tag and hide and seek games but were always warned of mountain lions, bears, deers, poison oak, ticks etc. After roaming the wild forrests for a few days and visiting the nearby ocean I suddenly felt this piercing/stinging sensation on the upper part of my left shoulder while in the forrest. I immediately went to swat at it and realized that it wasnt coming out and wondered what the hell is that?! I realized it was a tick! I rushed back to my mom and she pulled it out with tweazers. The tick was fairly big in size (at least where the back end of it had balooned out filled with blood) but I am not sure how long it was actually attached to me or how big the actual tick was. All I can tell you is that when I felt the piercing of it on the back of my shoulder it hurt really bad and the back of the tick was pretty large and filled with blood.

After being bit by the tick I thought nothing of it. I had no initial symptoms of a bulls eye rash, the flu, or night sweats and at the time had pretty much totally forgotten about the bite. However, extremely wierd things started happening to me that were almost unexplainable probably within months of the bite. The first symptom I had was I suddenly started having more and more of these wierd floaters in my vision. Next, my vision started to become blurry and at times I went into a total blank stare and almost couldnt focus my vision. I thought to myself "what is the matter with me" and went to go see an eye doctor. The eye doctor said I have poor vision (which I always have) but he couldnt explain any of my symptoms. Also during this time I remembered feeling extremely tired at random times of the day and I had to take a nap or I would feel totally out of it both physically and emotionally. (Approximately first 2 to 6 months after being bit)

So as time goes on these same symptoms come and go and I am still feeling somewhat frustrated but life is toilerable. Then my neck starts feeling very stiff and is very achy and I start to become concerned. I go to a chiropractor and explain that my neck is very stiff and he performs adjustments that temporarilly help. I also am feeling dehydrated a lot of the time as well. I go to the doctor and explain my visual problems, my stiff neck, and the dehydration and they do an x ray and blood tests but everything is fine. Wierd I think to myself. (Approx. 6 months to a year after bite)

So about a year and a half to two years after the bite I all of a sudden start having these terrible headaches. These headaches were extremely painful and happened almost everyday and were debilitating at the time. I had never experienced anything like this before in my life. The headaches made me feel depressed and caused anxiety because I am wondering "What is wrong with me and what is causing these painful headaches?" I start to notice that the visual problems "tend" to happen more and more when I am experiencing these headaches and I am reffered to a neurologist.

When I am referred to the neurologist I realize that I am the only young person there and that most patients are also women (not to discriminate the elderly or women by any means) The neurologist does more in depth bloodwork and also an MRI of my brain. Everything comes back pretty normal again. Around this time my ears start to ring, my balance becomes worse, my eyes become very dry at times, I start to develop TMJ, and I also have some sleeping problems. The doctor believes that I am having migrains and that stress may be involved. Also during this time I notice that some of my cognitive skills are somewhat diminishing and that I feel "wierd" because of all of these symptoms. I almost feel as though I am not myself anymore (as wierd as it sounds). Soon after the bloodwork the doctor asks the question "Were you every bitten by a tick?" I explain to him that I was but he basically disreguards it and does no lymes disease work.

As my symptoms progress and get worse my entire spine is always hurting and my headaches continue. I start having a lot of anxiety and depression because most of this makes no sense at all. My symptoms are so bad that I have to come home from college and start to live w my parents again bc I need more professional help that I am not able to get while away from home.

Without going into too much detail of the past two years of my life (age 22 -24) I can tell you that all of my previous symptoms are still here except for the headaches (what a surprise!) and I feel like an elderly person with arthritis throughout my entire body. To be honest I just feel tired and sick like I have been for the past years. The headaches suddenly stopped but my new symptoms feel like I have bad arthritis in my neck, back, elbows, wrist, knees, and ankles (and the pain can be sharp, burning, and also stiff). I am also having memory problems and tingling sensations in my hands and arms.

To recap all of my symptoms up to date and diagnosis from doctors (sorry you have to hear most of them again!!!) here they are in chronological order:

Floaters started appearing in my vision

Vision started to become distorted

Started having blank stares (like staring off into space)

Became extremely fatigued at random times (friends noticed)

Neck became extremely stiff

Ears started ringing

Dry eyes and mouth

Balance became worse

Started feeling very dehydrated

EXTREMELY bad headaches started that lasted for days at a time w/ no cause

Anxiety/Depression

TMJ

Started to not feel like myself anymore

Neck and Spine became stiff and needed regular adjustments from chiro

Fibromyalgia/Chronic Fatigue Syndrome/ Myosfacial Pain Syndrome  suggested diagnosis from neurologist

General Anxiety Disorder, Social Anxiety Disorder, and Depression are suggested from psychologist

Memory problems

Tingling sensation in hands

Current Medications/Supplements:

Effexor XR 75 mg(trying to wean off!)

4-5 fish oil capsules per day

2 500 mg magnesium capsules (opti mag)

1-2 220 mg advil/day (could use more!)

1 capsule vitamin D3

Am trying a diet of whole foods (mostly organic fruits, veggies, nuts, and unprocessed meats i.e. salmon, beef steaks) and avoiding dairy foods

Current Test Results Relevant to Lymes (I have had tons of other tests related with thyroid, cell counts, fatigue, etc. you name it) IF YOU HAVE ANY Q's about MY TESTS, DONT HESITATE TO ASK BC I HAVE ALL THE RESULTS from blood and csf!!!

Lumbar Puncture Results (Still have pain 3 months later...OUCH!!! Also taken 7 years after bite):

1. B.Burgdorferi AB (Western Blot w 5 or more active for antibody)

Borrela burgdorferi = Bb kD IgG

1. Bb 18 - non reactive

2. Bb 23 - ""

3. Bb 28 - ""

4. Bb 30 - ""

5. Bb 30 - ""

6. Bb 39 - ""

7. Bb 41 - REACTIVE

8. Bb 45 - NR

9. Bb 58 - ""

10. Bb 66 - ""

11. Bb 93 - ""

2. W.B. w 2 of 3 significant bands positive

1. Bb 23 - NR

2. Bb 39 - NR

3. Bb 41 - NR (It was in the previous one though!!!) ???

3. EB, IGM TO VCA-IGM

EBV Capsid, IGM - Negative <0.91

<= 0.90

0.91 - 1.09 Equivocal

>=1.10 Poistive

4. Herpes Neg.

5. Epstein Barr Virus AB IGG

EBV Capsid Ab, IGG POSITIVE

Strength of Signal >5.00

<=0.90 NEG

0.91 - 1.09 Equiv.

>=1.10 POS

NEVER had mono before and tested greater than 5... wierd!!!

ALL of previous results sent to:

Quest Diagnostics-San Juan Capistrano, CA 92675

33608 Ortega Highway, San Juan Capistrano, CA 92675

Also I feel that this is very important and I should not leave it out. I read in the forum rules that illegal drugs are not to be discussed but I have had some problems in the past with some drugs that I feel may have increased my anxiety and also symptoms. I never was a "drug addict"  (besides being a "pothead" during two periods of my life and drinking too much occassionally during the weekends while in high school and college) but I had "experiemented" (done a few times) with some drugs because of poor choices and friends. I have talked with my doctors about this and they have said that these symptoms would not relate with the drugs because I "Didnt do them enough." If you would like to know more feel free to contact me.

Thanks everyone for reading and any advice!!!

Sincerely,

A Chronic Pain Sufferer

Thanks Scorpio 1960! I am going to go to the website ASAP and look for a doctor. Your help is GREATLY appreciated!!!!!!

A Chronic Pain Sufferer

Good luck. Don't stop until you find an answer.

FMS,

As some others have stated on this thread, be careful not to hope/rely on blood tests (or any tests for that matter) to prove you have lyme.  Many people diagnose themselves and/or are diagnosed by a LLMD. 

Oh and neurologists, they are some of the worst doctors for lyme it seems.  I went to one 8-10 times until finally I got tired of him trying everything but ignoring lyme.  Its like the school that neurologists got to, to become a neurologist, doesn't teach them about lyme.  For a disease that affects the head and brain, its mind-boggling that neurologists can't diagnose this disease. 

Again as others have stated.  Don't stop pursuing lyme until YOU 100% for sure know that you don't have it.  Your story (1st post) is like so many others here, myself included.  Go find that LLMD now.  Until then, eliminate sugar and flour from your diet.  Exercise.  Go convince someone to prescribe you some doxycycline or minocycline. 

Take matters into your own hands.  Fight to get better.

Chief

scorpio1960 said...
I'm so sorry you've been experiencing so many symptoms and feel so sick. I can totally relate because much of your story sounds very similar to mine although I don't recall ever being bit by a tick. You really need to get to a lyme literate doctor. If you go to www.turnthecorner.org, you can request a list of lyme literate doctors in your area. Good luck.

FMS@23?