Do I Have Lymes Disease???

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FMS@23?
Regular Member


Date Joined Feb 2009
Total Posts : 24
   Posted 3/11/2009 3:13 AM (GMT -7)   
(Sorry For how long this "Biography" of my life is, but I am fed up with my symptoms! I am printing this and bringing it to my future doctors so they can read and evaluate it! Sincere thanks to all who read this and give their honest thoughts and advice!!!)
 
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
 
 
 
 
 

chief #7
Regular Member


Date Joined Apr 2008
Total Posts : 124
   Posted 3/11/2009 9:39 AM (GMT -7)   
To answer the question in the thread title.... Yes. In my opinion..

Chief

Cheezhead
Veteran Member


Date Joined May 2007
Total Posts : 517
   Posted 3/11/2009 10:17 AM (GMT -7)   
First off let me say I am sorry you have not been feeling well!! To answer your question (I am not a doctor) but I would say it is HIGHLY POSSIBLE YOU HAVE LYME DISEASE. Chances are your fibro symptoms could be caused by Lyme and/or co-infections. Please read the newbee tred here for some much usefull information. I would suggest you find a LLMD (Lyme literate medical doctor) ASAP.

 
 


Dowa
Veteran Member


Date Joined Sep 2008
Total Posts : 1120
   Posted 3/11/2009 1:37 PM (GMT -7)   
I think its also significant that your Epstein Barr IgG was positive. That is one of the only tests that was positive of mine. Have you ever had your immune levels checked. IgG levels and T-cell levels?? Just curious.... D

scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 3/11/2009 2:39 PM (GMT -7)   
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?
Regular Member


Date Joined Feb 2009
Total Posts : 24
   Posted 3/11/2009 3:10 PM (GMT -7)   
blush  Wow, thanks to all who have already replied!!! It's nice to know that their are others out there who can relate with some of my issues! I have done some readings on seeing an LLMD and I am going to start to find one ASAP. I read that they have "reliable" testing, unlike some of the previous doctors who took my lumbar puncture. The ironic thing is that my "naturologist" doctor had mentioned that some people would say that the western blot test that I had was unreliable. I also read that LLMD's are familiar with co infections like Anoyed had mentioned, which would be extremely helpful! Here are more of my test results (taken by a neurologist) that may relate w/ Lymes:
 
Cereberal Spinal Fluid:
CSF IgG Index = .48 (Ref. Range= less than .66)
Albumin, Serum = 5.7 (High) Ref. Range = 3.1 - 5.1
 
Bloodwork:
Albumin = 4.9 (High) Ref Range = 3.2-4.7
Free T3 = 3.42 (Range = 2.3 - 4.2)
T3 Reverse = 32 (Range = 11 to 32) Also says kit that was used was not approved by FDA... I scored somewhat high
T4 = 1.09 (Range = 0.6 - 1.61)
All Lupus and Rheumatoid Factors are Negative
Sed Rate is good = 12 (Range = 0-15)
 
Thanks again for all the help everyone!!!

FMS@23?
Regular Member


Date Joined Feb 2009
Total Posts : 24
   Posted 3/11/2009 3:14 PM (GMT -7)   

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


scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 3/11/2009 3:22 PM (GMT -7)   
You're welcome. I'm not sure if I'm allowed to post this information or not but I want to make things as easy as possible for you. At times I suffer with severe brain fog and the simplest things can be so difficult. Not sure if this is the case with you but Stephanie is the person who gave me a list of doctors in my area. Here's her e-mail address: stephanie@turnthecorner.org.

LF1980
Regular Member


Date Joined Jul 2008
Total Posts : 78
   Posted 3/11/2009 7:18 PM (GMT -7)   
Don't focus so much on the blood test results. The lyme blood tests are known to be unsophisticated and the diagnosis is often a clinical one.
 
Good luck. Don't stop until you find an answer.
 
 

FMS@23?
Regular Member


Date Joined Feb 2009
Total Posts : 24
   Posted 3/11/2009 10:14 PM (GMT -7)   

Thanx scorpio 1960! Yes, I too suffer from very very bad brain fog. I know that I used to not have this kind of fog when I was younger, but it has gotten worse and is very FRUSTRATING. I shouldnt be having memory problems at the age of 23 but I am. How were you diagnosed with Lymes? Did you have a spinal tap or blood work that was abnormal? Also did you ever see a neurologist??? Thanks a lot!

 


chief #7
Regular Member


Date Joined Apr 2008
Total Posts : 124
   Posted 3/12/2009 6:43 AM (GMT -7)   

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
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 3/12/2009 9:49 AM (GMT -7)   
Hey FMS,

After many years of being diagnosed and treated for CFIDS/Fibro I was finally correctly diagnosed with Lyme last month. I went to some of the best doctors in the country including, primary care, internists, infectious disease, neurologists, neuro-psychologist. All of these doctors did Lyme tests but they all came back negative and I did not realize that standard lyme tests are not accurate.

After becoming progressively worse and more desperate, I somehow came across a list of Lyme symptoms and realized that I suffer from 60 out of 75 symptoms and learned that Lyme disease is a clinical diagnosis. I immediately made an appointment with a llmd. After reviewing my medical file and symptoms he immediately made a clinical diagnosis and started treatment. He did extensive blood work but I do not know the results yet since my follow-up appointment is tomorrow. I have to say that I definitely see some improvement already for the first time in over 7 years. I'm sorry that it took me so long to realize that I needed to see a llmd but am so happy that I finally did. I'm hopeful for the first time in many years.

It's so frustrating and demoralizing because for many of us it effects every single aspect of our life: our health, our ability to function, brain, emotions, job, finances, social life, relationships with friends and family, etc.

I hope I didn't bore you will my long drawn out story but I want you to understand how important it is to see a llmd to either rule out Lyme or to make a correct diagnosis. I learned the hard way that we cannot depend on doctors who are not lyme literate to make a correct diagnosis. I was being treated by some of the best doctors in the country and still did not receive a correct diagnosis until last month when I went to a llmd. I think it's very hard for others, including doctors who are not lyme literate, to understand how sick we are and how debilitating Lyme can be.

Please keep us updated on how you're doing. I wish you all the best.

Sulma
Regular Member


Date Joined Apr 2008
Total Posts : 366
   Posted 3/12/2009 11:02 AM (GMT -7)   
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.
Hope the threadstarter has better luck with that.  I emailed them last December about an LLMD referral and never got a response.

scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 3/12/2009 5:29 PM (GMT -7)   
Sulma, I'm sorry you never received a response. My experience was very different and I received a response within hours. A week or so later I contacted them again for my cousin and received a response within 24 hours. I also hope FMS has better luck. That's why I posted the e-mail or the person who responded directly to me.

FMS@23?
Regular Member


Date Joined Feb 2009
Total Posts : 24
   Posted 3/12/2009 11:39 PM (GMT -7)   
Thanks so much Scorpio, Chief, Dowa, and Anoyed! It's nice to have others who can relate with my issues and realize the pain that I am going through both physically and psychologically! It is very frustrating when no one seems to believe you and you have significant evidence of "Hey something is wrong w/me and it's not all in my head!" I know for a fact that I was bitten by a tick in a "known lyme area", my symptoms started slowly and have progressed to almost a debilitating state that are SO similar w/ lymes, and some of my bloodwork and csf is abnormal but yet no one believes me! Well except for all my new friends on this forum!!!(As I say w/ a gigantic smile and tears of joy!)

As far as contacting an LLMD through turnthecorner.com, I have already recieved an e mail with a few LLMD doctors!!! Thankyou so much Scorpio!!!!! I am planning on setting up an appointment tommorrow so I will let everyone know when my appointment is and also the results! Thanks once again to EVERYONE for all the help and goodnight and god bless!!!

PS. This quote from Scorpio sums up my entire life since I was bitten by a tick at the age of 16!!!
"It's so frustrating and demoralizing because for many of us it effects every single aspect of our life: our health, our ability to function, brain, emotions, job, finances, social life, relationships with friends and family, etc."

scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 3/13/2009 8:20 AM (GMT -7)   
FMS, Just a little tip - Most llmd's have long waits for an appointment so it's a good idea to call every day or so to see if they get any cancellations. When I first called for an appointment the wait was over two months and I was lucky enough to have my appointment moved up to about two weeks after my initial call. So don't get discouraged, just keep checking for cancellations.

I do understand! I was fortunate enough that all of my doctors knew I had a physical condition and never doubted me but even after giving my family and friends evidence, test results, doctor reports and being immediately approved for SSDI and LTD for a physical disability no one truly understood and they still don't have a clue. It's so hurtful. I truly believe they think I'm just at home resting and enjoying my time not working. This could not be further from the truth. I've spent the past few years in horrible pain, total isolation and housebound not knowing how much worse it was all going to get. Most days I can barely make it to the bathroom. Before becoming sick I was a typical A personality with a great job, a very full social life and many goals. A few friends have commented that I might be depressed. Well, who wouldn't be with such a chronic, debilitating, life destroying illness. I think most people on this forum have unfortunately experienced this and understand all too well.

I apologize for venting. I guess now you can see my irritability that I mentioned in another post. LOL

Anyway, just know that you are not alone and things will eventually get better once you start treatment. When you start to see some improvement and the light at the end of the tunnel, I'm sure your emotional state will improve. It did for me and I hope the same will be true for you.

I was only officially diagnosed last month and am still learning so much, mostly from this forum. This group has been a lifesaver. The people are fantastic, very knowledgeable, supportive and compassionate.

You're in the right place and headed in the right direction.

FMS@23?
Regular Member


Date Joined Feb 2009
Total Posts : 24
   Posted 3/16/2009 1:39 AM (GMT -7)   
Thanks so much Scorp! It's crazy how everything that you have described about yourself and your situation is so similar with mine. Everyday I am in chronic pain and all my tests have so far came back "fairly" normal. Being a 23 year old man I should be at "the top of my game" right now and should be enjoying some of my so called best years. (Sorry I am venting like you ;)) Instead I have arthritis throughout my entire body, visual problems, chronic pain, brain fog, depression, enxiety, you name it... everything else that comes along with this rediculous disease from being bit by a tick! The one thing that I have learned from this disease is to not take life for granted and to have sympathy for others. I mean what about all of these poor people who are bound to wheelchairs for the rest of their life and people who are blind etc. I rememeber thinking when I was young "Thank god I am not having problems like that person has." Well now I am!!! And the thing that sucks for us is that we are so called "liars" or "it's all in your head" ... RIGHT, whatever you say doc because you know everything! However, eventually doctors will figure this disease out and people will be talking and learning about it as time comes. Rather than my brothers saying "Oh thats just my crazy brother. He thinks that a tick bite caused all of these symptoms but he's probably just crazy." And the person asking my brother this question says "Really? I remember he was a good athlete and had good grades in high school and now he's crazy?" Instead, our grandchildren will be saying "See, grandpa wasn't so crazy after all and lymes disease does exist and is misdiagnosed!!!" LOL. I'm tired or babbling away my frustration but I KNOW YOU UNDERSTAND AND ALL OF My OTHER LYMIE FRIENDS!!! Anyways, goodnight and lets try to prevent this disease from ruining other people lives and keep fighting for a cure and ways to prevent and test for this misunderstood disease!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
 

trd
New Member


Date Joined Apr 2009
Total Posts : 13
   Posted 4/28/2009 3:25 PM (GMT -7)   
It is newbie again.  Just received lab results in writing from my ID doc and wondered if anyone can interpret since my current ID doesn't think you can have Lyme disease in the area in which I live. He thinks I have parvo and have had this off and on since June '08, while my rheumatologist thinks it is more likely Lyme.  All labs done through Spectrum lab including Lyme disease Ab, Western Blot, CBC with Diff, Comprehensive Metabolic Panel, Epstein-Barr Virus Antibody Panel I, HIV Reflex, Human Parvovirus DNA, PCR and CMV antigenemia assay with the only abnormal values listed below.  I have a follow up appointment with the ID docs partner soon and I am hoping he doesn't have the same opinion.  I have been posting and getting several replies already from you all regarding LLMD and I am looking into seeing a LLMD now.  My symptoms include problems with memory, headaches, tooth and jaw pain, burning eyes, dry lips, chest pain, joint pain (including wrists, hands, fingers, elbows, shoulders, hips, knees (terrible in knees), ankles, feet (including balls of feet, toes),  swelling in fingers, wrists, knees, ankles and toes, low grade fevers 99.5 - 100.8 (was 103 at onset), sore throats, severe fatigue, low back pain, nausea with flares approximately every two months lasting 8-12 days. This is such a frustrating thing. Any advice would be greatly appreciated. I am finding that getting advice from "someone who has been there" through this website has been the greatest help of anything thus far including MDs up to this point.   
 
Lyme Disease Ab, Western Blot
Lyme disease 41 kD IgG                   Reactive
 
 
Human Parvo DNA, PCR                    Reactive
 
 
Epstein Barr Virus Antibody Panel I
   EBV VCA IgG                               4.55 H
   EBV NA IgG                               >6.00 H
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