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Lyme Disease Message Board


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My sons journey started wen he was 8. He was diagnosed with muscle loss of every joint area. I was told by doctors that he would outgrow it with PT and OT by the time he was 9. After 8 months of PT, OT and Aqua therapy he still continued with random joint pain. He was tested for rheumatory arthritis which was negative. Finally after hearing from 3 different people, in 1 month if he was tested for Lyme disease, I demanded his primary do the test. He scored 8 out of 10 bars positive for a prior exposure and was given a 30 treatment of doxycycline. I was told by 2 specialist he is healed becasue he had his treatment antibiotic doses. I was also told his joint issues has nothing to do with the lyme's diagnosis. My Lyme support group tells me otherwise. In May of 2011 he was diagnosed with hyper joint mobility ( Ehler's Danlos syndrome). Which I was told has the cause of his joint pain. In october 2011 he was diagnosed with osthocondritis disscerns (ocd) and had surgery on his left knee and six months of recovery time. However, in May 2012 after a month of lower back pain, an xray showed a slippage of his L5 in relation to his S1. However, the MRI is showing nothing - bone scan is showing nothing. Specialists are completely baffled and still saying it is not realted to his Lyme Disease Diagnosis. He also has asthma, eczema and environmental and ingested allergies, which I do know are not casued by the Lyme Disease. He has issues with short term memory loss and have seen a neurologist, who suspected he had myetonia. An EEG rules this out. His blood work continues to be negative for arthritis, however his eosinophils and basophils are highly elevated an his MPV is slightly low. His allegist just ruled that his EOS count is not related to inflammation or his allergies and asthma. SO we are now on the list to see a hemotologist. He continues to be in pain on a daily basis all day and all night long. The more activity he does the more pain he has. Anti-inflammatory meds do not help, nor does over the counter pain relief. We do heat and sometimes ice to help relieve it and try and make him more comfortable. We even tried the heat/ ice patches. They are soothing but don't relief the aching pain. After 2 years, and progressively getting more and more things wrong, it's disheartening to hear him say after doing activities a normal 10 year old can - he's gonna die because the pain is so bad and he cant move or walk. I am a single mom of 4 kids and have been told to see a LLD, however financially it is impossible for me. Does anyone know of any help I can get for my son where there isnt a hefty cost involved?





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