Posted 9/21/2011 7:57 PM (GMT 0)
Dear all,
I'd like to know what you think. Over the last year and a half I have been getting progressively sicker. Having been to the doctors numerous times I am still non the wiser as to what is wrong with me. I have been incredibly career orientated in the past and usually take the bulldoze through approach to obstacles. I have recently reached the point where I am completely floored, had to give up my job and move back in with my parents because I simply cannot cope. Whilst lying in bed over the last month or so, forced inactivity has led me to web research and the possibility of lyme disease. I havent exactly been careful with myself over the years and am no stranger to injury/ illness. Usually I can put something down to an activity or action and I suppose that is what I have been doing with these symptoms but I am now so far from normal I know something is v. wrong with me.
I have always had and out doors life and have worked as a fish farmer for the last 10 years in Scotland and N. E. England. In early 2009 I went to work at a new farm in Yorkshire. It was an indoor heated fish farm which represented a pleasant environment for all kinds of wildlife in the winter including mice. After a year or so I began to feel run down. around this time I recall are two persistant boil like spots on my upper arm. They did not resemble a rash and I dont recall the skin appearing to be pierced. I was able to burst one - rather like a large spot but not the other which persisted for almost a year. There was no rash around them and I thought little of them. Subsequently I became progressively run down;
March 2010 Groin pain (swollen lymph nodes right hand side), pain urinating. Urine culture and Chlamydia test negative. Boils appear on arm and one knuckle swells up (different arm)? - cannot remember when.
April 2010 Small veins noticed on left forearm. Attended multiple GP appointments. No accepted diagnosis. Gradually got worse and appeared on right forearm as well. Prescribed cream and antihistamines which had no effect. Thought at the time possibly of photodermatitis triggered by extended period of time spent driving in bright conditions.
June 2010 Feeling fatigued and generally unwell. Attended GP appointment and had chest x-ray, blood and urine tests. All returned negative. Slightly high blood pressure 140/90. Physically and mentally very tired. Stressful working circumstances.
July 2010 Joint pain, veins on arms spread. Repeat GP appointments. Further proposed diagnoses including contact dermatitis but no resolution. Resign Job, serve notice Aug - Oct
Nov 2010 Spot on tip of penis appears. Attend GUM clinic. Negative for all STD’s including HIV. Diagnosed with viral skin infection. New job, location
Dec 2010 Veins spread to back of hands, bridge of nose and cheeks. Dark circles develop around eyes. Severe cold, complete loss of sense of smell. Severe working conditions– night shift in extremely cold conditions. Physically exhausted.
Jan 2011 Pain developed in feet accompanied by burning sensation. Fore arm and foot rash develop – especially evident after contact with water/ bedding etc. Joint pain in knees, wrists and hands. Repeat blood tests return normal except slightly high cholesterol. High blood pressure – up to 200/100 at the doctors.
Feb 2011 On advice of rheumatologist friend got ANA/ ENA screen. Normal with the exception of an elevated Anti Smooth Muscle Antibody at 80 titre. Advised to repeat in 3-6 months. Attended Rebound – a lower limb injuries clinic, about foot problem. Orthotic insoles made. Worn since then on and off with limited improvement.
March 2011 Generally feeling run down and unwell. Stopped smoking and drinking.
April 2011 Developed chronic rhinosinusitis and post nasal drip diagnosed. Treated in August.
May 2011 Generally feeling run down and unwell.
June 2011 Generally feeling run down and unwell.
July 2011 Attended GP appointment for sinus problem. Referred. Had surgery to repair bankart lesion in right shoulder. Was hypertensive (145/95) and tachycardic (100-120) prior to surgery. Had sinus arrhythmia during theatre. Normal ECG following surgery. Gave up job, moved house.
August 2011 to present Diagnosed with chronic rhinosinusitis following referral to ENT consultant. Given a 5 day course of prednisone, month of nose drops and 2 month course of clarithromycin. Smell returned after 1 day but other symptoms remain. Energy levels and symptoms improved significantly during the course of oral steroids but subsequently dropped back to pre treatment levels.
Developed flu like symptoms following operation.
Generally feeling unwell. Symptoms highly variable. At best feeling reasonably normal. At worst feeling dreadful including;
• Extreme fatigue – some days I sleep all day!
• Light fever/ chills
• Feeling of prickly heat/ hot flush after around 20 minutes light exercise.
• Sensitive to sunlight
• Excessive sweating
• Foot pain including burning sensation across toes, stabbing between ball and heel, muscular pain over the top of the feet and up the inside of the ankle. Associated rash and sweating.
• Occasional pain at base of thigh near knees
• Continued rhinosinusitis pain
• Post nasal drip/ sore throat/ feeling liked I have a frog in the throat.
• Gastric reflux and abdomen pains
• Intermittent muscle pains
• Feeling like there is something on my chest.
• Red forearms
• Bruising more easily
• Joint clicking/ wrist pain
• Cold hands and feet
• Feeling of not being there/ brain fog/ not being able to think.
• depression
• neck and back pain and stiffness
• low level sore throat
• breathlessness/ air hunder
• palpitations
• rapid heart beat - can be lying in bed doing nothing and heart can be pounding away at > 100bp. normally 60-70
• generally weak
• spider veins developed on forarms, back of hands bridge of nose, cheeks, neck and shoulders, didnt have any prior to the last year
Repeated blood tests all normal including absence of H. Pylori except anti smooth muscle antib titre which has risen to 320. Referred to rheumatology on the basis of this and rash/ foot pain. Recently the possibility of fibromylagia has come up.
I wonder what you think? Is lyme a possibility? I have convinced my gp to test for lyme (begrudgingly) so we'll see what these results bring.
Some more specific questions:
1) Is there a connection between lyme and raised smooth muscle antibodies? I know ASMA's are non specific, the rest of my ENA panel is normal as are my LFT's suggesting no autoimmune so could lyme be causing this?
2) I took 100 mg doxy/ d for 2 weeks for my sinusitis. The first day I had double dose and immediatly felt much better. I felt wosrse after returning to 100mg. Subsequently I took clarithromycin 250mg/d for 1 month. This had no effect other than to irritate my stomach. I understand specific antibiotic regimes are often required to treat the different stages/ forms of lyme but is it possible I was seeing a response to a double dose of doxy?
3) One of my symptoms that worries me most is the skin on the backs of my hands, forearms and beginning on my upper arms. This has been diagnosed by a rheumatologist as erythematous macular lesions. Although the forearms are red particularly on contact temperature extremes/ sunlight /clothing its the diffuse small thread veins that concern me. They have appeared at an alarming rate (beyond normal aging!) on both arms and are now spreading to my upper arms and neck. Could they be a variation of acrodermatitis-chronica-atrophicans-herxheimer?
4) Foot pain and swelling is another symptom that confuses me. I have never had problems with my feet. All of a sudden over the course of a week both feet swelled up and developed a red rash on contact with hot water or bedding. I then developed a stabbing pain underneath the feet and subsequently on the inside of the ankle. Both feet are exactly the same which says neurological to me.
Anyway thats probably enough for now.
Let me know what you think, Thanks so much for your time.
You never know what you had until you loose it!