Saturday, July 4, 2009

My Lyme Symptoms - Stage III (Dec 01 – Apr 09)

This photo depicts how my hands looked for around a year before presenting to my initial Rheumatologist appointment in Dec 2001. More blood tests were ordered by my Rheumatologist and presumed MCTD. Brutal introduction to chronic disease and treating symptoms, and to adjust to the fact as there is no cure. Prednisone 10mg and Plaquenil 400mg a day was to commence during my next appointment, 2 months later, and I was informed to avoid sunlight and come back the following month.

I noticed rapid deterioration of my skin at that time. It turned thin and translucent, it aged really fast. I would scar badly as it now took my body a lot longer to respond to injury and to commence healing. If I burnt my hand, it wouldn’t blister for 3 days, and then it would take a month to heal. My joints inflammation increased again and I increased my prednisone to 15mg a day.

I noticed an increase in little red blisters I would get on my arms mainly and then got a terrible case of shingles on my right arm radiating from my back to my 3 small fingers, due to the steroids. I now know blister increase means to low immune system and monitor myself better. For the six weeks I had shingles followed by 12 months of unbearable post neuelgia. Tramadol was the best to give relief at the time and I continue to use this a day or two almost monthly when I have bad symptoms and pain that I cannot sleep. Neurontin helped though my CK jumped to 1000 which is toxic to my liver so I ceased that drug. When I was on it I had strange black-head like / hair follicle king of skin eruptions, mainly where I had scars from my shingles. I don’t know what that was about possibly dead nerves or toxin accumulation or simply natural exfoliation after 6 weeks painting sores with a pink lotion (?camomile). I was then given low dose antidepressants were given to aid sleep during pain. The nerve sensitivity lessened, and is now generally tolerable when it gets irritated.

My jaw involvement flared up on one occasion where I was frequently yawning from tiredness. The first time it took me 10 hours to fix a painful off centred jaw. Then later in the day I instinctively yawned again and ditto. It only took 1 hour that time, and the next 10minutes. My jaw was obviously very tender and now was giving me sharp stabbing nerve pain intermittently. The dentist took several x-rays and revealed my wisdom teeth were stuck behind my back teeth with the small roots growing in the nerves. Given my risk of infection in my current medical situation, it was preferable to wait and see if they remained stuck and to only have the surgery if absolutely necessary.

On occasion I had irritated eyes, conjunctivitis, inflammation and also. At one point approx 2003 I had a lump under the centre of one top eyelid like a cyst, placing pressure on my eye and affecting vision temporarily. That I eventually cleared up and then on other occasions I would get infected eyelash follicles, which I needed to clean with ‘J&J baby shampoo’ or medicated eye drops. My eyes get dry and annoyed easily so I try to only use the likes of clean wet ear buds or separate tissues for use around the area. Around 2004 I again noticed vision issues. I was seeing double vision 10-20m away. It was minor and I only noticed it on occasion. An optometrist said glasses were not required at the time.

I felt I wasn’t really managed well for a couple of years and sort out a new Rheumatologist despite the travel involved. I suspected I may have had infectious arthritis possible a mycoplasma infection, not purely Rheumatoid Arthritis. This was due to the fact that apart from symmetrical anthrelgia I also continued to have unsymmetrical inflammation and joint dislocations. My new Rheumatologist gathered my history and conducted further testing including baseline x-rays to check for erosion and bone density tests. There was concern as I had been on prednisone for a few years by this stage which wasn’t very good. I was interested in long-term antibiotic protocol which had some positive results in RA patients.

My new specialist understood my position, however wanted to try in addition to continuing plaquenil, the chemotheraputic drug Methotrexate in low weekly doses (followed by folic acid supplement). This reduces the inflammation response, rather than the steroid treatment which just processes the existing inflammation and can lead to osteoporosis. This was tolerated enough to wean off the corticosteroids over the next 2-3 year period, however over time the current treatment has had discomforting side effects including ulcers and digestive issues.

My overall inflammation has been better managed since this treatment regiment; however I have noted development of skin spots and increased neurological symptoms over the last 2 or so years. There could be several explanations for this, including the chemo-brain effect as it is referred to, or neuro-borreliosis or Lyme in the brain continuing to progress due to the limited drug crossover due to the blood brain barrier despite the rest of body treatment. I also noted increased vision deterioration since late 2007. On one occasion, if felt like my optic nerve was inflamed and/or spamming and all I could see was blur for over 30 minute on work day. I had been quite stressed at the time and this really scared me.

I finally ceased prednisone in late 2008, and had an especially hard year with night tremors and withdrawal symptoms increasing exponentially, and peaking 1 month after my last dose. For 1 week solid I had vivid nightmares or negative dreams, and would wake with tightly clenched hands and muscle spasms. Then it reduced to every 2nd night for a couple of weeks, then every third and decreased over several months.

Since April 2009 my eyes have been very irritable with increased light sensitivity, dryness, swelling and distance vision problems or with extended reading. I also started to have facial twitching at times. My left upper eyelid and my lower right eyelid have been twitching when I have been quite tired. It is very noticeable to me; however in the mirror it doesn’t seem so obvious. Interestingly enough, this is where I had cysts on my eyelids in the past. It seams that I could stop the left upper eyelid twitching by pressing a certain spot on my forehead. It is also interesting that I have a large 3-4mm diam red skin spot I have had for a few years on this exact location.

Photo of Acrodermatitis Chronica Atrophicans from:


  1. You posted this quite a while back, but I felt compelled to comment. I've been in the battle against Lyme and co-infections for over a year and half. But, I believe to have been holding the disease in remission or under the immune radar for at least a decade.

    Your specific case, after sharing details of my symptoms and hearing stories from others, tells me your problem in the later years is Babesiosis flaring.

    But, it appears to possess the same problem with skin changes that I do. When I try to attack the infection, my skin becames exactly as you detailed; accompanied with neuropathy and trouble breathing.

    I'm not sure you'll find this comment, but if you do, come to LymeNet and share how you're doing. Maybe we can beat this if we share together.

  2. Hi there, thanks.for your post to my blog
    After several years of treatment I had a year of remision on low dose maintainence ABX & plaquenil. I relapsed in 2014 due limely to a combo of virus, pnemonia, and inflamation when I tried to cease plaquenil. I was hospitalised with plural effusion, and pericardial effusion, and all joints are rhumtic again. I am about to try plaq+doxy + rifampin combo to kick the arthritis again. It targets Lyme/Bart/mycoplasmas so hopefully more positives by xmas andI can get back to work. Will have to look up Lymenet when I get a chance. Thx again. LymeGreenAustralia.