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Old 10-14-2009, 01:08 PM   #1
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Exclamation Doctor can't figure out what is wrong, thinks it's Lyme disease

The first paragraph is a background of medical issues for me. You can skip to the "In May 2009" paragraph to go straight to my medical issue.

I am a 22 year old college student in South Florida. I am an ex-competitive swimmer that still works out. I usually exercise 6 days a week with a mixture of weights, elliptical(usually 60-90mins/day), running(1.5/per day). Since getting injured from swimming in October 2003 I have had lots of medical issues. Starting with my shoulder issues that took two years to find out what was wrong with me and to have surgery on both shoulders. In February 2004 I had an onset pain in my abdominal pain and had a grapefruit size cyst on my ovary and lost my ovary. From this point to present I have ended up in the hospital multiple times with ovary cyst that ended up rupturing. In November 2006, I had a bad case of bronchitis where medicine wouldn't help and almost ended up in the hospital. The bronchitis came back for two years at the same time. In January 2007, I injured my knee and two well known orthopedic surgeons said I had classic symptoms and swelling of a torn meniscus. The MRIs showed it was not a torn meniscus and the doctors were baffled on what caused the symptoms. This same injury happened again in December 2008 and still was unexplained why I had so symptoms. In January 2008, I had bad shoulder pains with very tender spots throughout my upper back and shoulders. These tender spots would make me scream if you touched and I have a high pain tolerance from swimming. I had muscle pain, tingling down my arms, and loss of strength in shoulders and arms. I was in a lot of pain with this. After nerve test and MRIs that didn't show anything the doctor diagnosed me with myofascial pain syndrome. This brings me up to my recent medical issue.

In May 2009, I started to have flu like symptoms, bloody noses, sinus pain, ringing in my ears, slight fatigue, teeth pain, and headaches. I went to the doctor where she diagnosed me with sinusitis. I was given a Z pack and after two weeks I went by I still felt the same and still had the same symptoms. I went back to the doctor and saw a different doctor in the practice. She told me that I didn't have sinusitis and that I should do nasal irrigation to stop my symptoms. I started to do this and it made me feel a little bit better but for the next couple of months I would start feeling excellent then I would hit rock bottle and feel horrible with the symptoms. Also a few different symptoms arrised like memory issues, lightheadedness, and a few other things.

In August 2009, I finally went back to the doctors with my issues. She told me I had sinusitis again and gave me antibiotics which I believe were amoxicillin. After I was done with the medication I felt worse. I went back to the doctor and she wanted me to have a ct scan of my sinuses. The ct scan came back clean and showed I never had sinusitis. The doctor then recommended me to have full blood work up and to go see and ENT. The time in between seeing the primary care doctor and the ENT I contracted pink eye. When I went to the ENT he told me I never had sinusitis and that it was minimal allergies. He gave me a nasal allergy spray and saline gel for my nose to help with the constant bloody noses. This treatment only helped two of my symptoms, the bloody nose and sinus pain. The blood work came back with my SED rate high. My doctor said this was from my sinuses even though the ct scan showed no inflammation in my sinus cavities.

I went back to my doctor and told her I wasn't feeling any better and was actually getting worse. I explained all my symptoms again and she ordered more blood work. To check my thyroid and to see if I had Lyme disease because she was convinced that it was Lyme disease. The blood work came back with everything negative. The doctor was convinced it was a false negative result and that I had Lyme disease. She put me on a 14 day supply of Doxycycl HYC 100MG.

This brings me to this point in time. The medication didn't help any and I feel worse. She is trying to send me to an infectious disease doctor but I am having issues getting in.

My symptoms are:
-Headaches: I have been getting headaches almost every day and some turn into a migraine. One headache may me go to the ER because my head felt like it was going to explode.
-Fatigue
-Lack of Concentration
-Lightheadedness
-Blurred vision
-Muscle aches
-Muscle weakness
-Sinus pain
-Low grade fever( very random fever that comes and goes and is usually a max of 100 degrees Fahrenheit)
-Post nasal drip
-Lack of appetite
-Memory issues( Issues spelling, remember what I was going to say or do, and this is very odd for me because I have a photographic memory)
-Feel out of it
-Affecting my motor skills and my ability to drive as well as usual
-Sore throat
-Insomnia
-Ringing in my ears
-Skin rashes
-Confusion
-Teeth pain
-Lethargic

I am at wits end and that is why I'm posting my issue on a forum to see if anyone has an idea of what is wrong with me. It's affecting my day to day life. I can't go to the gym without being too exhausted. I went to the zoo for 3 hours with my nephew and I physically couldn't do anything for two days after from being so tired. The tiredness is completely unlike me as I'm usually a high energy person. This is interfering with my school and I just want to feel better. If anyone has an idea of what is wrong with me please let me know.

 
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Old 11-01-2009, 10:37 AM   #2
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Re: Doctor can't figure out what is wrong, thinks it's Lyme disease

Hi there,

You may be having issues getting in because many ID doctors will not see patients for "chronic Lyme disease" because most people don't believe it exists (though there are ID docs who are willing to treat it).

Has ANYTHING worked? Someone else posted something similar to you and I asked about things like exercise and/or antidepressants? I don't think you're depressed, but antidepressants do have medical effects OTHER than the mood effects which can sometimes help symptoms like the ones you describe. The problem with that huge list of symptoms is with their non-specificity. I'm sure you have every single one of those symptoms, but unfortunately together OR by themselves, they don't point towards any single diagnosis.

Again, I don't think you're depressed, but ask your doctor to see if she'll give you a short trial of venlafaxine or mirtazapine for a short period of time and see if it works. If it doesn't work, at least you know.

 
Old 01-04-2010, 08:20 PM   #3
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Re: Doctor can't figure out what is wrong, thinks it's Lyme disease

Hi, I am a long time sufferer of Lyme Disease. It took me 20 yrs to find out what I was suffering from.


Your symptoms are definitely Lyme Disease and possibly co-infections of Lyme Disease. The best blood test to take are from the Igenex Lab. in California. The standard test, The Western Blot and the Elisa are only 20-30% accurate. Two weeks of treatment with amoxycillin will not cure late Lyme Disease.

I am an advocate for Lyme Disease and just a note: most Infectious Disease Drs. are awful at diagnosing and treating Lyme Disease. you need to find a Lyme Literate Dr. in your area. Check it out on line.

Hope this info helps.

 
Old 01-06-2010, 11:19 AM   #4
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Re: Doctor can't figure out what is wrong, thinks it's Lyme disease

< edited > believe it or not, that is an unexplained skin disease, that seems to be sweeping the country, <edited>, there is a huge list of reported symptoms randing from neurological, gastrointestinal psychological etc . . . , from fatigue, memory loss, insomnia, headaches skin rashes, vision problems, muscle and joint pain and weakness, depression - - - OMG the list goes on and on ... Just a thought . . . Good luck. <edited> Currently the CDC is doing a full blown study to determine its origin and exactly what it is.

Last edited by hb-mod; 01-07-2010 at 02:31 AM. Reason: Please don't post disallowed websites as per Posting Policy. Thanks.

 
Old 01-31-2010, 04:39 PM   #5
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Re: Doctor can't figure out what is wrong, thinks it's Lyme disease

Actually I think you have mono. Did they ever do any blood tests?

 
Old 02-01-2010, 05:30 PM   #6
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Re: Doctor can't figure out what is wrong, thinks it's Lyme disease

So a couple weeks after taking the antibiotics I started to feel better. I still ended up going to the infectious disease doctor and he said it was absolutely not lyme disease. The only thing that shows in my blood work is that I have an elevated SED rate. I have had every blood test you could think of and nothing besides the SED rate showed up. I also suffer from shoulder issues too. I was a competitive swimmer as I mentioned earlier and never thought what happen to me were connected. My shoulder pain is more tenderness in my shoulder joint, with fluid in both shoulder joint and biceps. With snapping and cracking in my shoulder blades and tenderness along my shoulder blades. The surgeon who is the best, thought it was snapping scapula syndrome. I had a MRI of both shoulder joint and scapula. The shoulder had the tendinitis and bursitis. While the scapula was clear and that's where the source of my pain. With almost pain throughout my back that feels like electricity(it's hard to explain). After the doctor saw the MRI, he knew it wasn't Snapping Scapula. He then started asking questions and said maybe the two were related. That maybe it was an autoimmune or something. Seeing I am always getting sick and when I do it's the worse. Also the fact that my not feeling good and pain in my back comes and goes, like episodes. So now I'm thinking that my shoulder pain, me always being sick, and my symptoms are connected. Also recently, I just had a staph infection on my hip, out of no where. Any thoughts?

Last edited by mengineeringgir; 02-01-2010 at 05:31 PM.

 
Old 07-11-2012, 09:28 AM   #7
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Re: Doctor can't figure out what is wrong, thinks it's Lyme disease

I read your post a couple years after you wrote. I am writing to find out if you were able to be helped. I had chronic Lyme disease and it took over three years, 12 doctors and more aggravation that I can express to get to the bottom of the problem. If I can give you any insight let me know. I was put on 6 weeks of infusion therapy plus 4 months of Physical therapy. Lyme disease is so misunderstood. If I can be of any help, just let me know. I had heart problems, urninary problems, could not walk, etc. etc.

 
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