Mad bad World of Lyme Disease was an expression I heard recently, it was in connection with Alex Wade's diagnosis of Lyme Disease, details on Alex Wade's blog Surf Nation.
Alex has had 4 positive NHS blood tests for Lyme Disease over recent months, 7 months of EM rash photos posted on his website and 2 months Doxycycline on NHS, way beyond the standard two weeks recommended.
Alex's rash is still visible, according to my understanding the EM rash is diagnostic of Lyme Disease by CDC. Even by IDSA standards, with Alex on going Neurological symptoms this should mean 1 month of IV antibiotics, which as the HPA guidelines follow these guidelines should be what Alex is given.
Once again Alex is given the run around, now the HPA are suggesting that perhaps all his 4 positive tests done by them in their labs, which are considered the gold standard are all false positives. (no other labs test results are accepted by HPA in the UK for Lyme Disease other than HPA ones).
As Alex grapples to understand what is going on it is painful for those knowledgeable about Lyme Disease to stand back and watch without trying to help. Alex's recent post says he is getting about 150 e mails a day mainly about Lyme Disease. No one who has struggled with Lyme Disease would want another person to struggle untreated through what we have struggled through.
I was diagnosed with Fibromyalgia, ME/CFS, Poly Myalgia Rheumatica and then eventually my GP suspected Lyme Disease which was later confirmed by a clinical diagnosis. On long term antibiotics I have my health and life back.
I joined a chat line Euorlyme and regularly 'converse' with other people who like me were diagnosed with ME/CFS but then found that it was in fact Lyme Disease.
I also follow other ME/CFS blogs but time and again I see that patients have so many symptoms that could be Lyme Disease, but are either refused testing or get negative test results and so their doctors and they dismiss the possibility of Lyme Disease, without properly getting checked by Lyme Literate Medical Doctors (LLMD). It is such a waste of lives to go undiagnosed properly and not treated for a condition that can be treated and symptoms relieved. Many top Lyme doctors and ME/CFS doctors recognise the overlap with these illnesses, something I have posted about before.
For many of us who have beaten Lyme or helped our loves ones through this illness it is heartbreaking watching others fall through the cracks,(more like chasm) knowing all we can do is raise awareness and advise about the considerable research available that supports ILADS treatment. Sometimes it can take months before people listen and do indeed follow up, by seeking a diagnosis from doctors specialising in Lyme disease. Those wasted months can be crucial in fighting this illness, which was described at the IDSA review hearing last July as a formidable bug.
Don't be fooled by Lyme Disease, extract from Scratching the Surface 'The immune evasion strategy used by B burgdorferi is similar to strategies used by the mycobacterial agents that cause chronic infections such as tuberculosis or leprosy.' Who ever heard of treating either of these illnesses with two weeks antibiotics?
Judith Miklossy research says 'Even in the doubt of tuberculosis it is obligatory to treat patients with "tritherapy" for 6 months. It should be an example for the future treatment of Lyme disease. Such treatment, in analogy to tuberculosis and syphilis will substantially prevent extensive healthcare costs in the future.'
One day those who have a stranglehold on this illness will be exposed and medicine will at last move forward saving thousands of lives from carnage, meanwhile be your own best advocate and get informed.
For more information visit Lyme Disease Action charity website