Ill since March, getting progressively worse

[Curmudgeon76]

I was very sick with mono in November and didn't adequately rest was back to work within two weeks.  I started getting sick again in March, and have been getting worse since.  Symptoms started as flu-like and have progressed (jaw and neck stiffness, muscle weakness followed by twitching all over body, somtimes visible on sufrace of skin and sometimes burning sensations, minor arrythmia (diagnosed with PAC's in 05 but have gotten worse recently, shooting muscle pains, headaches, shortness of breath).  I've had a sensation of like fire shooting up spine into the back of my head and felt like I couldn't stop shaking.  I have Been tested for: west nile, two lyme tiders and western blot, HIV twice chest x-rays, echocardiogram, syphilus, brain mri result was consistent with Chronic Fatigue or Lyme, EMG, muscle enzyme tests, 24 hour urine test, two EKG's, countless labs, all results have been NORMAL.  I've seen several specialists.  I continue to have slightly swollen glands which are uneven on one side and tender.  I have been having constipation, feelings of flushing.  I often get hot flashes and feel fluish/feverish even though my temperature is often subnormal (sometimes as low as 96.9).  I just went for a cat scan today (for bladder, bowel, etc) and am having a spinal tap soon.  Please help me in deciding where to go from here, are there any specific tests you can recommend?

[idefee]

i would find a lyme literate medical doctor and have them do more extensive tests for CHRONIC lyme disease.  it is very difficult to diagnose and due to that fact is somewhat controversial.  i wouldnt trust my primary or even many specialists with re-evaluation.  i recently saw an episode of mystery diagnosis on discovery health channel with just such an illness.  time after time of negative test results a rheumatologist/internal medicine specialist in new jersey (dr leslie ann fein) was able to positively diagnose chronic lyme disease and within 2 or 3 years of i.v. antibiotic treatment patient was 100%.  it is a progressive and very debilitating disease which can mimic many diseases because of its ability to attack any system within the body.  its not uncommon that it attacks the neurological system and can present itself with dysautonomia of several organ systems and affect the heart and temperature regulation, etc just as you have mentioned.  please check out this website for further information.  i believe you may have this, regardless whether or not you have tested positive, recall a tick bite or rash.  http://www.canlyme.com/

[Curmudgeon76]

Dr. Pho,

I have had a test for Lupus as well as a rheumatoid panel.  Is there any possibility of a virus attacking the muscles?  My doctor said that my blood work indicates that my immune system is healthy and and that there is a very low chance of this.  I've also heard of a condition called Chronic Fatigue Syndrome that presents itself often in people with Epstein Barr which can apparently be very deabilitating.

I sustained a puncture wound in April and had not had a Tetanus shot within 11 years.  I had muscle twitching in my arm and jaw the next day but I went and got a tetanus shot.  I have had a lot of tightness in my jaw and throat but I was under the impression tetanus comes on very fast.  Do you, or any one else on this forum, have any other suggestions?  Thanks

[Kevin Pho, MD]

Sorry - that last part about the urologist was typed in error.  Disregard that.

Kevin

[PlateletGal]

All of your symptoms sound familiar to me. I would definitely consider pursuing the CFIDS (Chronic Fatigue Immune Dysfunction Syndrome) and lyme disease route... especially CFIDS because you had mono and had health problems ever since. To my knowledge though, CFIDS patients' don't have the muscle twitching, however.. fibromyalgia patients' can and often do have muscle twitching and there are many CFIDS patients' who have fibro symptoms and vice versa.

CFIDS affects your nervous, immune and endocrine system. There have been over 3,000 research studies on CFIDS and the CDC says that there is an "abundant scientific evidence that CFS is a real physiological illness."  In addition, many CFIDS patients' have POTS (postural orthostatic tachycardia syndrome). It usually is a delayed form of POTS, so your physician will need to do orthostatics on you a couple of times. You may want to do some searching on the internet for Paul Cheney Ph.D. and his research on CFIDS and heart issues amd Dr. David Bell, who is a Harvard graduate.

There is a national lab in Nevada that has a test for CFIDS and Fibro. However, the test is still in the research phase, but they are open and doing lab tests on patients' around the country. The test requires spinal fluid. The name of this lab is RED LABS USA if you are interested in finding out more info --- they have a website. I'm sure insurance won't cover the cost of the test though, because it is still in the research phase.

I have CFIDS and had symptoms of it after I had mono. I was only a teenager then and for years went undiagnosed. I did manage to work and what I found had helped me the most was alternative medicine. Unfortunately the last couple of years my symptoms progressed, so my Endocrinologist put me on a research protocol. There are people with CFIDS who do make a full recovery.

As far as lyme disease as a possible diagnosis... you may want to get tested again. What I've heard is that people who have lyme disease -- their immune system is so compromised and fooled by the bacteria that it sometimes can't produce the antibodies needed. Hence, a negative test result. Normally people who have lyme disease have a bulleyes rash after they have been bitten by a tick. Do you recall a rash like that ?

[Kevin Pho, MD]

You have had a comprehensive evaluation which would have ruled out many of the major disorders leading to the symptoms.  

Hot flashes and low temperatures can be caused by a variety of endocrine disorders.  Checking the thyroid should be considered.  

The arrythmia should be further evaluated with a Holter or event monitor.  If there is significant rhythm problems, a referral to an electrophysiologist can be considered.  

I would also check for rheumatologic disease, with an ANA and rheumatoid factor, since disease like lupus can cause systemic symptoms like the ones you are describing.  

These options can be discussed with your personal physician.

I would discuss these options with a urologist.

Followup with your personal physician is essential.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Kevin, M.D.
kevinmd_