this is a letter from Dept of health of to me about lyme and blood transfusions, you will see paragraphs of lots of (((((((((

inside those (((((( are my replies that myself and another lady with lyme experience have included between us, as this ignorant letter needs a reply so me and the other lyme knowledgeable lady have

included our answers to her within her writing, our answers are contained in (((((((( and ))))))), and to say that people who haev had lyme can give blood after 14 days clearance is disgraceful, the whole problem is that lyme can be laying dormant in a person and they wouldn t even know, I think JEHOVAHS witnesses havegot it totally right

Dept of Health.

: Reply to your correspondence

Our ref: ***************

Dear Mrs .

Thank you for your correspondence of 1 and 10 January to the Department of Health about Lyme disease. I have been asked to reply.

I was sorry to read of your ill health, and I appreciate your concerns about Lyme disease.

I would encourage you to

continue to discuss your problems with your doctor, who is best placed to assess your health needs.

(((( (((( ( How can he be when he's not got any information about the correct diagnosis and treatment of Lyme? or the fact that it can lay dormant for years, or the

multiple symptoms and devastation it causes, there is enough knowledge out there from Lyme but doctors and NHS are very closed off, about lyme, it is very complicated and

doctors are general practitioners only))))))) .....

If you would like to make a complaint about your treatment, you can direct your complaint about your GP to the practice manager, or make a complaint about your treatment at a hospital to the trust responsible for it provision of services.

(((((((( Making a complaint is more than we DARE do because LYME destroys ALL FUNCTIONS and Body systems and gets into the brain and nervous system, and if we complained we WOUL D HAVE no help at all with the consequences of LYME.))))))))

Details of trusts can be found by using the search function at nhs.uk.

(((((((( That is a complete waste of time - you'll just get more patronising claptrap from them. They are accountable to nobody!)))))))

More generally, the Government is committed to improving support for people suffering with Lyme disease.

((((((( (( how can they ? they haven’t a clue ,neither have GMC of how to do proper testing.))))))))

The Department has commissioned the National Institute for Health and Care Excellence to prepare national guidance for the recognition and management of Lyme disease, which will be available in 2018.

((((( (and just who are they asking for guidance on these NICE guidelines. They MUST get guidance from experts in the USA and Germany as there is not one single doctor in the UK who knows anything about it!! This is your most important question!))))))))

In addition, Public Health England has helped revise the patient advice on NHS Choices and will work with NHS colleagues to increase awareness in the medical profession and to see how access to specialist services for Lyme disease patients could be further improved.

((((( (Again they need to get guidance from people who actually know how to treat it i.e. doctors in Germany and USA. Back in the 1980s and 90s there were scare ads everywhere about AIDS. The Lyme epidemic needs similar ads. It is as dangerous if not

more so than AIDS as it is transmissable in so many ways.))))))

With regard to your concerns about Lyme disease and blood transfusions, people infected with Lyme disease may not give blood. A donor must be completely healed or recovered from any infection for at least 14 days

before giving blood.

(((((( ( This comment shows your complete ignorance and beggars belief. Lyme can hide in the body for years in 3 different forms -bacteria,biofilm and cyst - without the host knowing it's there, and then it can strike unexpectedly YEARS later. Even after a course

of antibiotics it's impossible to know if it's gone

for good. This 14 day rule is NOT ACCEPTABLE. Blood should be routinely tested before being given to another patient. How can a person know whether or not they are infected with Lyme when there's no

accurate test in the UK. I am sorry to point this out but Government and NHS and Public Health dept are

completely out of touch with knowledge regarding Lyme tests, a simple blood test is totally inadequate, cd56 cd 57 NK absolute, cd8 and cd4 cells have to be

included/ western blot is for antibodies, Q-RiBb test is for ANTIGENS, co infections go with Lyme, bartonella, babesisa, c. Difficile, and more including MOLD which as always overlooked, all cause a magnitude of

symptoms, it is a death sentence for those

not treated, it changes its DNA in the body and produces devastation. A simple blood test is NOT GOOD ENOUGH. You need to learn from Lyme literate American and german doctors. Dr Klinghardt, he has lyme himself, Dr Richard Horowitz, Dr. Armine. Robert Cowden to name a couple.)))))))

I hope this reply is helpful.

Yours sincerely,

Marie Langrishe

Ministerial Correspondence and Public Enquiries

Department of Health

--------------

Last edited by

7 Replies

oldestnewest
  • Chronic Lyme is a very serious disease and too many doctors are unaware of it. In the US, millions may be unknowingly infected and treatment is entirely inadequate, leaving many debilitated permanently.

    Proper diagnosis is important, both for Lyme, and for co-infections. The tests you've listed are good ones.

    Once diagnosed, comprehensive treatment is the only way to a cure. Busting biofilms, attacking it with antibiotics, botanicals like Samento, and oxygen therapies, righting/repairing systems like thyroid, and attending to nutrients depleted by the ravages of Lyme.

    Getting adequate sleep, exercise, and being on a nutrient dense diet are helpful.

    And Lyme patients should never give blood. Quite frankly, from what I've learned of chronic infections, it's extremely risky to get ANYONE else's blood - it's not screened adequately.

    Thanks for bringing this important issue to light. If you're in the UK, educate yourselves and lobby now before the standards come out in 2018.

  • learner you are well informed iknow we have spoken about this before thanks for your imput.

  • That's so scary so many people could infact contract the disease if they are letting people with it donate blood. I saw a news report a few years ago about a lady who was wheelchair bound after getting it. She could get no help either. I must admit I don't know much about it so there obviously needs to be way more awareness about it.

  • google lyme, there is so much info out there which beggars belief of why nhs doctors and governemnet are so bloodyminded about it, NO ONE is safe anditcan cause thyroid as well because it causes dysfunction and it is not just from ticks one lady I talk to got it from horse flies, any animal bird fox rabbit that has been infected with the little bug! ger...

  • I will thanks.

  • Otzi the Iceman, the 5300 year old mummy found in the Alps, had a Borrelia (Lyme) type infection, so it's not new.

    The problem is that it's multiplied in the densely populated New York/New England area, and fleas and mosquitoes carry it, not just ticks. And as people travel, the spread grows larger...it's shown up on the US west coast as well as in Europe.

    There's a lot of politics around it ... forces are keeping the issue hidden as it's so difficult and expensive to treat, so better to not acknowledge it in the first place, right?

    I know several people with chronic Lyme, many who found they had it after years of mysterious illness. They are not only battling the tricky Lyme spirochete, but doctors and insurance companies, too, to get adequate treatment. And your NHS, who doesn't seem to be able to manage simple T3 problems..

  • absoultly total!

You may also like...