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Thursday, May 28, 2009

Update

Lewis is alot better today after having a bit of sickness and a high temperature. We have also spoken to Lewis' paediatrician about antibiotic therapy and specialist physio as well as the specialist doctor who did Lewis' Lyme Disease testing. The specialist doctor has said: The tests indicate a chronic immunosuppressive situation associated with Lyme disease and Dr Schwarzbach recommends Chlamydia pneumonia testing, plus antinuclear antibody titre. The latter I think you have already had performed. So we'll let you know tomorrow if we hear any more!

2 comments:

Joanne said...

I have just read your news with tears. As you know I have suspected that Lewis could have been sufferring from Lyme disease and with the medical controversay was worried that you would not have him adequately tested and assessed or I thought you had dismissed the possibility when the first tests were negative.

I am so pleased to hear you have a diagnosis. Yes it is going to be such a long struggle to recover his health but step by step you will succeed in at the very least improving his quality of life and who knows many of his symptoms may be reversed. Children seem to respond much better than adults.

I know you will want to read and educate yourself on lyme Disease ASAP and the best way is through www.lymediseaseaction.org.uk and also through Eurolyme.

I started a gardening blog when I had recovered sufficiently from Lyme Disease to garden again and on my blog at the top right I have put links into the many research sites that I have found helpful. They are just a start in your long journey.

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

Such a waste of a child's life because of just a handful of people having a stranglehold on diagnosis and treatment, leading our doctors and consultants to be mis informed and misguided by IDSA guidelines which have been discredited and under process of review.

You will meet nay sayers amongst doctors but you need to be strong and fight for what you feel is best for Lewis.

I ask one very big favour, will you report back to the journalists that wrote your various newspaper articles and get them to publish an update. There is no need to wait for improvements they will come in time. This is of such newsworthy copy in view of the horrendous time Lewis has sufferred and the publicity may well help others including children to get diagnosis and treatment.

I know this is a big ask but it is so difficult to get the media to do any in depth reporting on Lyme Disease they dismiss it as soooo rare. Well if doctors don't look they don't find and not all blood tests are reliable at all stages of the illness.

Give Lewis the biggest hug from me I will be following his progress. One day ILADS guidelines will become the norm and many more children and adults will have their lives turned around.
Love Joanne

Alison said...

Joanne just told me about your children and your blog!
Wow! you realy have your hands full. I have a friend here in Canada who is a heamophiliac and I have Lyme so I have a bit of a clue what you are going through.
I hope you will look to something like Eurolyme or Canlyme or Lyme disease action group or an other Lyme group for support. Without their help I would be nuts by now.
If you have the fortitude to tell your story to the newspapers, radio stations and / or TV stations you would help people around the world.
If my arms could reach you from here I would give you all a BIG hug so please accept a hug from me by email Is that called an e-hug??

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!