Lyme disease

[penumbra]

I have been struggling with chronic fatigue for 5 years. It began suddenly accompanied by muscle fatigue, muscle exhaustion and muscle weakness especially in my legs as well as shortness of breath. Soon after I began having digestive problems, bloating, abdominal pain, indigestion and constipation. I also experienced ear ringing, persistent sore throats and insomnia coupled with periods of heavy sleep; low and upper back pain with a stiff neck. I saw an alternative MD who diagnosed me with irritable bowel syndrome with some yeast overgrowth issues. Under his care I followed a low carbohydrate diet with probiotics, coupled with adrenal support supplements. This helped somewhat but I never recovered stamina and many of the symptoms have persisted. Since then I have had vertigo twice, the second time accompanied by head pressure somewhat like congestion, headache and occasional low grade fever, blurry vision and sense of pressure behind my eyes. The head pressure and headaches now never goes away as well as a continuous kind of brain fog. The fatigue and digestive problems have been persistent throughout. I saw another physician this time that tested for Lyme and for signs of inflammation. There was no inflammation and the western blot came back negative. I still think it may be Lyme disease but this most recent physician has no more ideas about it except to send me to neurology for more testing. Is this Lyme? What else could it be? Can anyone help?

[penumbra]

Thanks for the feedback. I can appreciate the difficulty and frustration in getting a diagnosis!  I am also frustrated ( not to mention incredulous ) with the somewhat dismissive attitude and lack of interest my health care provider is showing in pursuing this as if to imply that multiple symptoms of this nature may not be not legitimate. Your suggestions for research look like useful leads. Thanks.

[KayDesigner]

You poor thing ~ I so feel for you.  You're symptoms, unfortunately, are all too common and can encompass a load of things.  Your story sounds A LOT like mine.  The sad / bad part about it is that it took about a year to finally get a diagnosis.  Patience is NOT my best virtue, and quite frankly, waiting to see a doctor or waiting on a vague diagnosis can not only be crippling physically, but emotionally, mentally and spiritually as well.

I am by NO means a doctor; however, because I have been through it, I can just share with you some of the things I learned or got dx along the way.

Your symptoms sound a lot like Epstein-Barr (Chronic Fatigue Syndrome), Fibromyalgia or a combination of the two.  They do go hand in hand.  It also sounds like Lyme's.   In doing research though, testing for Lymes is tricky as it has to be done at the most exact time to catch a positive reading.

You say you have muscle problems as well.  Well there are a miriad of muscle disease out there that can give you the symptoms that you have.  Digestion being one of them as your stomach is basically muscle related and can cause digestion problems if those muscles aren't working properly.

I was finally diagnosed with a form of Adult onset Muscular Dystrophy (via muscle biopsy); however, like I said, it took a year to get to that point.  

Just some things I would do if I were you...just speaking from experience:

1.  Go to a Rheumatologist or Neurologist first.  They are more adequately able to help with symptoms such as these.

2.  Start researching Fibromyalgia / Epstein-Barr (Chronic Fatigue Syndrome) / Dystrophy / Myopathy and see if any of those make more of a fit in what you are experiencing.

3.  Unfortunately, also like I said, you have to be patient.  Trust me, with any of these conditions / diseases, stress can make it MUCH worse.

4.  Be VERY VERY VERY persistent in finding an answer.  There were times when I wanted to throw in the towel and give up.  I didn't and I am so glad I kept going because if I hadn't, I would not be at the point I am today.   Remember, you pay the doctor for their services ~ the doctor doesn't pay you for your services.  I think, JMO, doctors and/or their assistants have a tendency to get that concept backwards.

5.  I am a person of faith and for me, pray, pray, pray that God will not only give you an answer but send you a doctor that has the wisdom and discernment that you need, but also compassion.

Good luck in your quest.