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Old 01-09-2009, 03:36 PM   #1
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MY story what do you think?

Allow me to introduce myself my name is Jeff Kunshek. I am 23 years old. Up until two years ago, October of 2006, I was a very healthy young man an aspiring bodybuilder. I still try to be healthy but it seems like something is holding my body. No matter how much I eat or lift I cannot gain weight.

All of a sudden in October of 2006, I came down with flu-like symptoms. I went to my family practitioner complaining of clogged ears, floaters, muscle weakness, chronic fatigue, headache, and joint pain all over my body. I thought that it was The Flu. He thought that I had mono and swabbed my mouth for a mono test. The test came back negative. Two weeks later I returned to his office complaining of upper sinus infection and trouble breathing. As the symptoms increased he prescribed many different kind of antibiotics. Each antibiotic I took, I experienced weird reactions that he said does not happen when you take that particular antibiotic medication and said I was making them up. For example, I would hallucinate, tingle all over my body, and have severe joint pain, it was so bad I thought I was dying and losing my mind. Then he said I needed to get a job to keep my mind off things. I was a full-time student taking five classes. Finally he referred me to see an ENT and Psychiatrist. He referred me to the Psychiatrist because I requested every possible test. He accommodated me. Nothing came back positive. Every test was perfect. The doctor said that I should not be having the problems that I was experiencing. I began to panic in my mind as of what am I suppose to do, because I had no clue as what to do.

First, I went to the ENT, thinking maybe a specialist could fix the problem hoping that would end all my troubles. The ENT then prescribed heavy doses of antibiotics. Each prescribed antibiotic gave me horrible reactions: whole body tingling, major panic attacks, severe left shoulder pain and left elbow pain so severe that I thought I was having a heart attack. The only antibiotic I did not get reactions on was Levaquin. As the infection got worse the ENT ended up doing sinus surgery. But prior to surgery he recommended I see a Psychiatrist. At that time I was in no shape or form to deal with a surgery of this nature. I went to the Psychiatrist and explained all my problems. He put me on lorazepam, two a day, and 100 mg seroquel to sleep at night. Shortly after this I was ready for the surgery. I was put on IV antibiotic for the surgery. The day of surgery was the only day that my ears felt as if they were draining. I had to go back for a follow up after the surgery. But my ears were still clogged. I continued to see floaters, and additional symptoms. My ears remained clogged to this day. The CT scan of the ears and sinuses was normal.

As I continued having problems, I contacted a Chicago physician. I gave him my medical history. He suspected Lyme or Candida and immediately put me on nutritional supplements and doxycycline hyclate, 100 mg twice daily. I started taking one a day to work my way up because of the Herxheimer reactions. I was on this medication for more than 8 weeks. I started to improve, little by little. I reached a point to where I felt somewhat normal, but yet so far from normal. It has been so long since I have felt normal so I did not know what normal felt like. To this day I still do not know what normal feels like. At that point, the doctor was going to switch me to ABX but held off to see if I continued to improve. From that point he treated me for systemic Candida. It seems I have come around in a full circle and the symptoms are NOW worse than ever.

Over time, I have seen numerous physicians and have been diagnosed with fibromyalgia, chronic fatigue syndrome, and psychiatric disorders. My current symptoms are:

Rashes on body parts (thighs)

Long red lines of raised rash disappearing and recurring

Unexplained hair loss (when I am taking a test I can count about 20 hairs on my paper or when I am reading the newspaper)

Headache, mild to severe

Pressure in Head behind ears

Twitching of facial or other muscles

Stiff or painful neck

Jaw pain and stiffness (TMJ)

Sore throat, clearing throat a lot, phlegm

Double or blurry vision

Increased floating spots (that look like worms)

Pain in eyes

Oversensitivity to light

Flashing lights/Peripheral waves/phantom images in corner of eyes

Decreased hearing in one or both ears

Plugged ears

Buzzing in ears

Pain in ears

Oversensitivity to sounds

Ringing in one or both ears

Diarrhea/Constipation

Upset stomach (nausea or pain) at one point was taking GERD medication (Protonix)

Bone pain, joint pain and swelling

Stiffness of joints, back, neck, tennis elbow

Muscle pain and cramps

Chest pain or rib soreness

Unexplained chills

Unexplained shaking

Burning or stabbing sensations in the body

Fatigue, weakness

Pressure in the head

Numbness in body, tingling, pin*****ing

Poor balance, dizziness, difficulty walking, lightheadedness, wooziness

Mood swings, irritability

Unusual depression

Disorientation

Feeling as if you are losing your mind

Over-emotional reactions

Crying easily

Too much sleep, or insomnia

Panic attacks, anxiety

Memory loss, Confusion, difficulty in thinking

Difficulty with concentration or reading

Going to the wrong place

RAST allergy test – all negative

Flashing

Daily popping & cracking of joints

Speech difficulty

Stammering speech

Loss of sex drive

Unexplained breast pain

Testicular pain

Unexplained weight loss

Extreme fatigue

Swollen lymph nodes (neck and groin)

Unexplained fevers/drop in body temp.

Symptoms seem to come and go

Pain migrates to different body parts

As of October 2006 "flu-like" illness, after which I never felt normal

As a child, I was always in the forest. Our backyard is a forest. Daily one can see deer in the subdivision.

It seems on a daily basis the floaters in my eyes look like worms get continually worse. I have been to the ER many times but am assured nothing is wrong and I am experiencing a panic attack. I sometimes experience jerking movements throughout my whole body. I feel that my skin is crawling and often twitching. When put on prednisone by the ENT my left knee and elbow swelled up. Most of the symptoms occur on the left side of my body. Initially I had severe temple headaches.

I have been put on pages and pages and pages of medication in which none have helped just made things worse. My joints pop and crack daily. I also get this symptom where it seems someone is turning the lights on and off real quick along with the daily hallucinogens I see.

I can provide you with a list of the numerous prescribed and OTC medications. None of these helped me. They only made things worse. It took me three days to focus and write this letter. I tried to focus on main points on what has been happening to me. I am sure I have left a lot out due to my memory being severely affected.

 
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Old 01-10-2009, 05:09 AM   #2
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Re: MY story what do you think?

Hi - you said the doctor suspected Lyme. Did he actually run all the tests needed and did they come back positive? I have Fibromyalgia and have had and still have just about every single symptom you do with the exception of a few. I have been sick over 25 years. I have been tested many times for Lyme. One came back borderline positive but the more I read, the Lyme tests I had are just not enough to diagnose. My dentist has Lyme and he is convinced I have it. I am now seeking to find a Lyme doctor in the NJ area but most do not take ins. and I cannot afford their prices or the prices of the bloodwork to diagnose me.

 
Old 01-11-2009, 05:44 AM   #3
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Re: MY story what do you think?

Coon, It is very early in the morning, I haven't slept all night again!!!! I am reading your story and my heart is breaking for you. I feel your pain so much and I don't even know what to say to you except hopefully a doctor or someone affiliated with diseases or someone will read this that can help you. It was a really good idea to put this all down on paper. It is terrible, you are way too young for all of this. I also have "Fibromyalgia", probably most of my life. I had symptoms when I was very young and several several other ones that are way worse that crop up over the years. Like you, I have gone to every specialist, physical therapy, etc. etc. I have Chronic Pain in my neck and my shoulders. In the year 2000 I found a neurosurgeon who said that he would be willing to operate on my neck as my bones were degenerating at C5/6 C6/7 and I had bone spurs and arthritis. Him as well as his partner both assured me that if they put in cadaveur bones between the vertabraes with titanium pins and plates to hold them in and scrape off the bone spurs and arthritus that it should take the pain away!!!!! Well I went for this major surgery because I was desperate and woke up afterwards still feeling the exact same headache that I had had for 3 years everyday in my forehead around my sinus area and my neck pain was still there 100%. The doctors said give it time but the pain never went away. I was then told, "oh I guess you have fibromyalgia"!!!! Well it has been six years and I have had the nerves burnt in my neck at the pain clinic, botox injections, cortizone shots, physical therapy, st. johns neuromusclar therapy, sacral cranial therapy, the little needles put in (sorry am sleep deprived, can't think of the name of it) and none of them has worked. I also have been tested for absolutely everything, I do have "Epstein Barr Virus, CMV Virus, which are both Liver Viruses, TMJ, Fibromyalgia, insomnia (my system just cannot fall asleep at all). I have just been through hell for the last two weeks as my family doctor had me on some very strong pain killers and I didn't want them any more and went to a withdrawl clinic for a week and was put on "suboxone" and now have tapered myself off of that and I am in horrible withdrawl from it. Way worse than the opiates I was on for the pain. Right now I am on nothing, I can't take anything for my pain, I am so tired because I get no sleep, I have restless legs, a headache all of the time, etc. etc. Like you I have been everywhere and now everything is blamed on "Fibromyalgia" and I almost give up. Do I start all over again or do I just leave it and believe that is going to be my best quality of life for the rest of it. Believe me the state of mind I am in, life sucks!!!! I am 57 years old and have always been happy go lucky and fun and full of life. I am so drained now and fed up with all of these tests where they find nothing. I could give you also a long long list of drugs that I have been on that haven't worked.

I hope you find some peace soon or at least some Light at the end of the tunnel. If you at least knew it was in fact Lymes Disease for sure then at least there are treatments. I have thought also that mine might be lymes but nobody ever tested me for it and also candita. I was told by a homeopathic doctor that I had yeast in my system and started me on very very expensive pills for over a year and nothing ever changed so he told me he couldn't help me anymore. You feel like you are walking around like a zombie and you don't want to tell anybody any other symptom because (my) or (yours) whole life feels like one big symptom.

I hear you, my name is Lyn, If you ever want to talk I am here. I feel your pain and anxiety and I feel so bad that you are in the prime of your life and that you are going through this. What about something like the "Mayo Clinic, just a suggestion. I have been told to try that but now they believe it is only "Fibromyalgia" and there isn't much help for it so you get put on the back burner. I tried to make an appt. once at a rheumotologists office years ago and told them I had Fibro and the nurse actually had the nerve to say to me "oh we don't take fibromyalgia patients, you guys take too long"!!!! It wasn't a very nice thing to hear.

Well take care and hopefully they will find something else to treat soon. Lyn in Michigan.

 
Old 01-11-2009, 10:39 AM   #4
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Re: MY story what do you think?

Hi Jeff, welcome to the board. You truly need to get to a Lyme Literate Medical Doctor. Look at the top of this board on the thread "Doctors and Clinics" and see who is the closest to you. If you can not find one then post a new thread asking for one in your surrounding area. Majority of people have to travel. But as you can see going to different doctors is such a waste of time. Plus it just drives one insane. ugh!
If you don't find one you can let your fingers do the walking and search for a Lyme support group in your area. Usuallly they have a contact person, I would thinik they would know of Lyme Literate Medical Doctors in your area.

The raised streak like rashes sound like Bartonella, a co-infection.

The having problems with different antibiotics sounds like a herximer from them The dose is not high enoough and your treatment is not long enough to kill what ever you have.

Your not crazy! But you really need to get to a doctor that will put you on the right protocol.

Angel, I see a Fibro/CFS specialist. He is a sceintist, researcher, D.O., internal Med, Rhuemtolgist. He looks outside of the box. There are reasons for your pain and suffering. Don't let anyone tell you that it is uncrueable. He treats bacterial, virual, protozas in people.

Look up Dr. Martin Lerner. Have you been to see him? If not he is in your area. You can read about him if you do a search.

And it would be a good idea if you were tested for Mycoplasma Pnumoniae,and Chlamydia Pnumoniae. These bacterias besides lyme can cause all of the symtpoms you are having.

Herpe virus's such as EBV and CMV can also cause your problems.

Good luck to you both!

Jodie

 
Old 01-12-2009, 09:48 AM   #5
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Re: MY story what do you think?

Jodie

Thank you so much for answering me. I will look into that doctor that you are telling me about and also those other diseases. In my heart I am not giving up and I seem to think that there is an answer somewhere, but nobody will go any further "outside of the box". I have gone to a homeopathic doctor before who discovered the Epstein Barr Virus and CMV Virus by just touching me on certain parts of my body and could tell. He said to get it tested by my own family doctor and sure enough the test came back positive for Epstein Barr Virus. He gave me several homeopathic drugs and I was on them for a long time and spent a lot of money on them and I never felt any better and so he told me he couldn't help me any more. I had given up on that part of my medical problems but will look on these health boards a bit more with that problem. Thank you so much for your advice. I really appreciate it. Take care Lyn in Michigan

 
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Old 01-18-2009, 07:41 PM   #6
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Re: MY story what do you think?

Jeff, you described everything I have bee experiencing since January 2006. You have Lyme. Take it from another bodybuilder who lived his whole life healthy. Now I'm sick. I can tell you exactly what the worm shape objects in your eyes are. I know I have them. It took research but I have the answer.

We are almost exact in symptoms and how the antibiotics make us feel after taking them.

KARL

Last edited by moderator2; 01-18-2009 at 07:58 PM. Reason: please read the posting rules

 
Old 01-19-2009, 12:39 AM   #7
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Re: MY story what do you think?

What are they?

 
Old 01-23-2009, 08:10 AM   #8
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Re: MY story what do you think?

This could be many things, youre experiencing symptoms of 20 different diagnosis'. Id hurry to a doctor right now and copy what you posted and hand it to him

 
Old 01-23-2009, 08:12 AM   #9
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Re: MY story what do you think?

Quote:
Originally Posted by kramth View Post
This could be many things, youre experiencing symptoms of 20 different diagnosis'. Id hurry to a doctor right now and copy what you posted and hand it to him
You may also have severe anxiety disorder. SAD causes many odd physical reactions.

 
Old 01-27-2009, 12:12 PM   #10
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Re: MY story what do you think?

Just got back from LLMD I have LYME DISEASE.

 
Old 01-27-2009, 12:44 PM   #11
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Re: MY story what do you think?

Congratulations on your diagnoises!!!

Now you can start your recovery treatment...

Is the doc checking for co-infections??

Thank goodness you kept looking for answers!

Jodie


 
Old 01-28-2009, 10:49 AM   #12
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Re: MY story what do you think?

yes he is testing for co-infections

 
Old 01-30-2009, 08:04 PM   #13
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Valtrex???

has anyone used Valtrex? my doctor wants me to take it to help with the ebv while i treat lyme disease? my doctor wants to do this has anyone herd of this??

 
Old 01-30-2009, 08:05 PM   #14
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Valtrex

has anyone used Valtrex? my doctor wants me to take it to help with the ebv while i treat lyme disease? my doctor wants to do this has anyone herd of this??

 
Old 01-30-2009, 08:18 PM   #15
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Re: MY story what do you think?

Yes I am on Valtrex. Have been for a couple years now.

If you haven't read up on Epstein Barr it would do you good to learn about it. It is in the herpe family and can cause many problems.

It won't cure you of it. But will help put it in check.

We lymies are just a breeding ground for many virus's and bacteria's.

Have you started any treatment for the lyme yet?

Good luck for a speedy recovery.

Jodie

 
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