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Wednesday, June 17, 2009

So angry

Lewis dad has finally been able to get through to the Infectious Disease doctor at Sheffield. They have lost Lewis' referral letter but have an appointment in for him for 9th September ... that is two and half months away. We need to start Lewis' treatment ASAP, especially as he is always healthier in the summer and of course because the further away we get from his initial infection with Lyme Disease (September 2005), the less recovery we can expect. The appointment on 9th September will be to talk to the doctor, to discuss IF Lewis even has Lyme Disease according to their archaic out-dated tests and if he does, what they can offer and when, bearing in mind Lewis will have to have surgery (for a port-a-cath or hickman line) which will mean more waiting. There is NO WAY we are waiting until next year for this treatment - he needs it now.

2 comments:

Joanne said...

I just posted this on faceboo but thought I'd re post here too.

I think you should seriously consider treatment at the Breakspear privately. yes very expensive.

The ID consultant is stalling in my opinion. He will refer back to the 'expert' at HPA who will advise that if NHS tests are negative then treatment is not appropriate. Wendy will confirm many other known cases.

If NHS test were positive then ID consultant would only give about a month at the most of treatment in line with current HPA guidelines following IDSA guidelines. IDSA guidelines are currently under review because panel members were found to have significant undisclosed financial interest etc.

Eventually ILADS guidelines will become the norm as more and more people recover following these guidelines but Lewis has not the time to wait while doctors play politics with Lyme Disease.

There are some parents who have been severely criticised for not following HPA line, so as my friend Jane did with her daughter Elizabeth take Lewis to the Breakspear unless you have a paediatrician or Neurologist who can take the trouble to read the considerable evidence supporting ILADS guidelines.

I am so sorry that this is happening but not at all surprised I did however think that Lewis' doctors would take the trouble to learn more when faced with such a sick little boy instead of just cow towing to HPA restrictive guidelines.
See LDA website recent response to IDSA review. They only test on NHS for one Borrelia when there are several other known ones in Europe.

If you want to read more about Lyme Disease have a look at my blog there are many links into information on the top right hand side.

http://joanne-orangecottages.blogspot.com/

Best wishes Joanne

Tarnya said...

I totally agree with Joanne’s comments about the ID consultant, HPA guidelines and NHS. Don’t waste anymore time trying to stay within the NHS for Lewis’s Lyme Disease treatment. You must go to doctors who are experienced in treating children with Lyme Disease and co-infections. If you have to stay in the UK I believe the Breakspear is the best place for help, however, we took our 6 year old son straight out to the US for Lyme Disease expertise and an ILADS treatment plan which we have followed successfully back here. Perhaps a combination of the two would be the answer? My son has made huge progress and our family life is back. I will email you directly more of our story and my personal contact details if I can be of any help to you.

Take a look at other videos of Lewis at YouTube

The Lewis Jeynes Fund

The Lewis Jeynes Fund was established to provide care and support to Lewis Jeynes and the success of the Fund has meant that we have also been able to purchase specialist equipment for other children with undiagnosed neurologically degenerative conditions in Doncaster and the UK.

Lewis and his friends around the UK all suffer from acute and undiagnosed life limiting or terminal conditions and very often specialist equipment is difficult to afford due to the changed circumstances at home. This is where the Fund can provide vital assistance to those in need. All of the proceeds of the Fund go straight towards helping Lewis, and other children and families like him and us.

Contributions should be sent to The Lewis Jeynes Fund, 15 Kentmere Drive, Doncaster, DN4 5FL or by BACS to Nat West Bank, “The Lewis Jeynes Fund” Account No. 35662565 Sort Code 60 06 39. You can also go into your local Nat West Bank and pay into the Fund over the counter.

22nd October 2005

22nd October 2005
Lewis checking our supermarket receipt!

April 2006

April 2006
Colchester Zoo, just before Lew stopped walking

August 2006

August 2006
Lovely ice cream yummmm!

September 2006

September 2006
Ward 30 - just after Lews first major seizure

October 2006

October 2006
Doncaster childrens assessment unit - 'm on the phone!

October 2006

October 2006
In DRI childrens assessment unit blowing up rubber gloves!

30th November 2006

30th November 2006
Ward 31 - Blowing kisses to Daddy! Mwah!

30 November 2006

30 November 2006
Ward 31 - Playing cars!

1st December 2006

1st December 2006
Frankie & Benny's - just discovering cant eat very well

7th December 2006

7th December 2006
My arm doesnt work but my tongue still does!

7th December 2006

7th December 2006
Playing with Evie and mummy on the sofa

7th December 2006

7th December 2006
Lew in the bath with Evie providing entertainment!

7th December 2006

7th December 2006
At Homestart Christmas Party, waiting for Father Christmas with Aunty Nicola and Evie!

December 2006

December 2006
Playing with Miss Jodie at Building Blocks Nursery

i love you much (most beautiful darling) by e.e.cummings

i love you much (most beautiful darling), more than anyone on the earth and i like you better than everything in the sky -sunlight and singing welcome your coming although winter may be everywhere with such a silence and such a darkness, no one can quite begin to guess (except my life) the true time of year - and if what calls itself a world should have the luck to hear such singing (or glimpse such sunlight as will leap higher than high through gayer than gayest someone's heart at your each nearness) everyone certainly would (my most beautiful darling) believe in nothing but love

Lewis' cousin Millie

Lewis' cousin Millie
January 2007

Lewis and his cousin Evie

Lewis and his cousin Evie
February 2007

Lew and his cousin Anna

Lew and his cousin Anna
February 2007

12th December 2006

12th December 2006
DRI Christmas Party - meeting Father Christmas!

30th December 2006

30th December 2006
Lew in Ward 31, not very well

5th January 2007

5th January 2007
Ward 31 - playing with my lovely balloons!