Sunday, 12 August 2012

DO YOU HAVE SYMPTOMS THAT MIGRATE - Arthritis, Myalgias, Neuropathic pain inc tingling and numbness?

Do you have symptoms that migrate? Such as Arthritis, Myalgias, Neuropathic pain (inc tingling, numbness)

Is your pain influenced by hormonal cycle ? ( worse flairs before, during or after cycle) - sorry to the men

Is your pain resilient to 

standard treatment modifiers (NSAIDS, SSRI's, Neuroleptic mediators, Narcotics)?

Does antibiotic use increase or decrease pain (ie. Jarisch-Herxheimer reaction)  given for such as sinus or UTI infections ?

Is you pain associated with multi-systemic symptoms?

Then you are probably looking at a Muti-Systemic Infectious Disease Syndrome - MSIDS

Watch this presentation by a leading doctor in this field Richard I. Horowitz, MD at a hearing 
hosted by Congressman Chris Gibson

 - starts at 18 mins in .

NB. RA and Lupus Rheumatoid factor correlates with antibody titres against Borrelia - Lyme Disease, something most Rheumatologist don't yet recognise.

In an earlier presentation By Dr Horowitz at the 2010 London ILADS conference DVD available through Lyme disease Action charity  Dr Horowitz mentions that Plaquenil plus  Minocycline often used in treatment for RA patients as a disease modifier regime - actually begs the question are they treating an underlying infection perhaps Lyme Disease and Mycoplasma.

I posted links to this hearing previously, Dr Horowitz presents in Part 1  here   

Watch live streaming video from skidmorevideo at


  1. Hi Joanne,
    Hope you don't mind but I've added a link to your blog on mine. Be great if you could do the same :)

    Sheryl @

    1. Hi Sheryl nice to meet you. Thank you for the link to this blog I have now added you to my blog list and dashboard to view your posts. When I get a few minutes I will pop over for a good look at your blog. Take care and best wishes to you,

  2. Hi Joanna,

    I really hope you can help me. I accidentally stumbled across this link, watched the whole presentation and was astounded to see I have every single point on the MSIDS model. I've been ill for nearly 20 years, the last 10 years I've been severely ill, completely bedbound with extreme light and noise sensitivity, seizures and excruciating migrating pain. I was diagnosed with ME 19 years ago, but I do wonder if it was a misdiagnosis. I live in England, but was wondering if you could please tell me if there is any way I can get blood samples shipped to a lab that Dr Horowitz thinks is reliable that will tell me if I have lyme/NSIDS?? I've absolutely no clue where to start with this so I'm really hoping you can point me in the right direction. I just want to get well. I just want my life back. Thank you. :-)

    1. Hi Purplestarrs I posted my reply below best wishes

  3. Hi Purplestarrs I am so sorry that you have such a horrid disease with so many symptoms and for so long.One of the main labs that many Lyme literate doctors use is IgeneX
    You can contact them for details of how to ship blood and they may well send out a test kit but you will need a medic to draw blood some GP's are supportive others not in which case you can pay privately for this.
    IgeneX are still antibody tests and so still not 100% capable of finding a postitive ie some false negatives. You may even try and get GP to do a NHS test especially if you remember any of the early symptoms of tick bite, rashes or camping in Lyme area at the start of your illness - if so you need to ask for Western blot even if Elisa is negative.
    Or you may decide to go to private Breakspear Hospital in Hemel Hempstead where they deal with patients with ME/CFS as well as Lyme and will do a number of different tests to try and identify any underlying conditions something NHS do not do very rigorous testing if any other than basics.
    Of course if you are so severely bedbound and with light and sound sensitivity plus other symptoms you may not physically be able to attend a clinic. However I have a friend whose daughter became so ill and after 9 years of ME diagnosis they managed to get her to Breakspear and tested she had Lyme Disease and after long treatments finally recovered and now aged 21ish she lives a normal life working in the French Alps actually I met her a couple of years ago at a conference - the ME/CFS charities did everything they could to dissuade her parents not to spend money at Breakspear but thankfully they followed their hunch and in their case it payed off. But it was very expensive.

    There are other labs in Europe and a couple of new tests one in US and one in Netherlands that are in the pipeline and sounding promising for more accurate identification of an ongoing infection.
    I would suggest you join Eurolyme and have a look at the information in files and chat with others on the forum if eventually you decide that Lyme may not be involved at least you will have learned something along the way. As to the many other infections that Dr Horowitz talks about Breakspear and other German labs do test for many of them.
    I am afraid much of it is down to each of us individually to do our research and then discuss with our doctors what treatment choices are best for us.
    Another good resource is the UK charity Lyme Disease Action
    My very best wishes to you and hoping you are able to get the help you so clearly need and have not had so far.