This forum is for questions and support regarding What Causes Lyme Disease, Diagnosing Lyme Disease, Joint Pain issues, Living with Lyme Disease, Nervous System issues, Prevention, Risk Factors, Skin Disorders, Symptoms and Treatments.
Well my GP just rang me, she spoke to Porton Down Medics last week, and told the Porton Down doctor what was happening to me.
Basically they said the Breakspeare Clinic always seem to tell people they could have Lymes with just a few things showing up, and they said it isnt like that. You have to have full blot results etc before they would consider it as lymes.
The rash i have is of no importance, they said i would not have a rash after so long if i had it for over 10 years.
They had no idea why i had a reaction with antibiotics.
BUT they said they would retest me for Lymes, so i have to go in and have bloods and they will be sent to Porton Down.
So basically everyone in the world is rubbish, except for Porton Down.
So i am stuck again.
Now just wondering should i take a few days of antibiotics before the blood tests to see if it will stir something up lol...or just give in gracefully, and try to live my life the best I can.
I am disheartened and fed up.
I spent 3,500 of money i never had, to be told it was all a waste of time basically.
What gets me though is they are not considering that the tick i got bitten by was south american not english, and therefore perhaps would react differently to antibiotics and could cause the rash.
I understand how you are feeling ... but don't give in to the b*****ds. (Those are my asterisks, but I'm sure you can figure it out.)
You can look seriously into herbal treatments and go that direction, or keep pressing ahead on the medical front.
[This is what is ahead for us in America ... Obamacare will make the rules, and what the CDC says about Lyme is what will be followed. Free medical care? Yes, and we get what we pay for. Obamacare = UK's National Health.]
"Never give in, never give in, never; never; never; never - in nothing, great or small, large or petty - never give in except to convictions of honor and good sense." -- Winston Churchill
Jackie is right, never give in.
I survived donkeys years in teh UK with no damn help at all.
I used nutrients and, knowing what I know now, I would also use herbs. For me, nutrients have done more than half the work of giving me a decent life. You can buy those unlimited online.
I know it is the pits and my god I sometimes wish a whoel load of politicians and heads of medical insurance companies would get lyme disease. OK I am wicked, I don't care!
I usd to have ventricular tachycardia, that heart arrhythmia that made a few footballers drop dead on the field. Tony Blair had this and after he got operated on, like the week he was back in parliament, he made a law saying nobody must EVER have to wait more than 4 months for that particular operation on the NHS. So you see, once they know what it's like themselves, they get things sorted out pretty damn quick.
What we need is for someone to release a phial full of live ticks inside the Houses of Parliament.
OK I'm just kidding, but I do like to daydream about achieving fairness and justice sometimes...
I have the same wish :( if they would get this Bloody Lyme or their family members...maybe than they could realize...And year by year more and more people are getting Lyme...
We are in the UK,it's not India or Africa...not poor or undeveloped country...Shame on You, UK government and bloody NHS
I am so sorry about your struggles! It is actually absurd that an English based treatment plan would require you to be full CDC positive on a Western Blot. The CDC surveillance criteria was developed in small area of the Northeastern US using primarily rheumatic patients (joint & muscle pain) who had been infected between a few days and a few months.
It has never been evaluated in late stage patients, in a large group of patients with neuro symptoms, or in areas with greater genetic variation, let alone on other species! People who get Lyme in the South and West in the US seem to be more likely to fail the surveillance criteria. People in Australia who get Lyme rarely test positive according to the CDC. (There are at least 2 species identified there other than b.burgdorferi.)
Only once have I heard an IDSA doc qualify his defense of the tests as being applicable for cases of Borrelia Burgdorferi in North America. While in reality, testing is fundamentally flawed here, it is ridiculous to think that any other countries would use it when they have completely different species of Borrelia.
Even if you got yours in the US, if the UK lab is comparing your antibodies to a test kit using a local Borrelia, it likely wouldn't match up either! (My understanding of IgeneX's testing is that they use one b.burgdorferi strain and another European strain in their tests.)
I would encourage you to stay on the doxy right up to the test. Some people don't show much at all on the Western Blot until they've been in treatment for a while and the immune system has recovered enough to be making more antibodies. But of course, this is not the "official" position.
While it is uncommon to develop Lyme rashes late in the disease, it is possible. More common is rashes showing up with antibiotic treatment. This is the site of the doctor featured in Under Our Skin mentioning it part way down this page. You might find other sites as well to convince the person at Porton Down that they are uninformed. (I Googled "Lyme rash after antibiotics")
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