Do you remember being bitten by a Tick? - Living with Lyme ...
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Even with a positive NHS test now they won't act as they don't recognise Chronic Lyme this is ludicrous! Did you listen to the Jeremy Vine interview with a journalist who has Chronic Lyme? If not, I've posted it in the community if you want to listen.
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Thank You for the compliment and I know that poor lady ..... I wish we could get that breakthrough to get MPs talking but I suppose if Caudwell has tried with all his money & influence with no success it will be a hard slog to get all the issues of Chronic Lyme into Parliament. But we must keep fighting....... what else can we do........
Yes, I was bitten, 2007, no topical cream worked. I got flu symptoms and 6 weeks later, asked pharmacist advice as I had a rash around a circle (we felt it odd and a little amusing, that it looked like a bullseye! Never heard of lymes then). Pharmacist sent me to A/E I was given antibiotics. No one ever mentioned lymes.
2008, my hands and feet suffered agonising cramp pain. I felt very unwell. Saw rheumatologist diagnosed with ctd. Treatment prescribed was hot gel hand baths. I went to work and had treatment during lunch break.
For the next 6 years, I struggled with ill health symptoms. I collapsed 2008. Sciatica, prolapse discs, migraine, sjogrens syndrome (which I was told had been in my blood test 9 yrs earlier), discoid eczema, and contact dermatitis were also diagnosed at this time. I had suffered body rashes; had chemical testing found to be allergic to cobalt and nickel.
My ill health struggles continue. I was recently diagnosed with fibromyalgia. Skin rashes continue. Food intolerant, environmental issues...on and on... New symptoms...
I have been treated for hypothyroidism for over 20 years. I was fine taking meds, working, bringing up a family until the year I got bitten.
I got bitten in woodland that is home to deers.
To me, the symptoms which I suffer, shocking brain fog, joint pain, utter fatigue etc... seem more like lymes disease as I did not have these symptoms before.
I believe I did get tested for lymes (nurse said I did), last year after 2 episodes of shocking cellulitis and awful infection elsewhere.
Its so hard getting info and or an equal discussion with medics, since I became so chronically unwell.
I can relate to the electric shock type pain and I get zaps to my head frequently.
Nowadays, I read around the topic and I have thought of getting testing abroad.
I read of Caudwell family experience and my heart went out to them. Though, as you say, he does have money. I believe he is a man of determination too (my brother once worked for him), but he can't get the mighty powers of medicine to take lymes seriously, can he?
Like most patients with chronic illness, I plod through the days, knowing with the right medical team, I could really enjoy life again.
Take care. X
Have you ever looked into Leaky Gut, Small Intestinal Bacteria Overgrowth and a parasite cleanse? This seems to help improve symptoms a little and this link might be of interest
prohealth.com/library/six-w...
I have also heard that infrared saunas help remove toxins and also people speak of RIFE machines (although costly) - there seems to be limited research it is helpful but dozens of people in Lyme community speak of this as helping control symptoms.
Hope this helps
Emma
Thank you. Yes, currently I'm trying many alternative ways to improve my health.
From friends on Health Unlocked, BSSA, Thyroid UK, my own research, reflexology, Dr Peatfield-Durrant, and using a shed load of supplements, I am so much better than when I was first taken ill.
For me, the support of friends in similar situations, the charities, the internet searches, kind, compassionate people, have absolutely put the medical establishment to shame!
I found no NHS medic useful in searching for cause and effect. Rather, medication was prescribed, over and over, to suppress my immune system. To alleviate pain too.
Four months of swallowing such chemicals brought me to my knees! Neutropenic etc... medicine prescribed by drug pushers made me feel very unwell.
With my newfound support, I no longer take prescribed meds other than levothyroxine. Levothyroxine, I'm told is a must! Hmmmm, one day, maybe, there will be a more natural alternative to that too!
Always living in hope. X
Meanwhile, I continue to trust in, and listen to, my body.