LOOKING AT LYME DISEASE - MSIDS: DO YOU HAVE SYMPTOMS THAT MIGRATE - Arthritis, Myalgias, Neuropathic pain inc tingling and numbness?

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 livestream.com

5 comments:

LymeandBack16 August 2012 at 16:56
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 @ www.lymeandback.blogspot.com
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Anonymous21 February 2013 at 06:08
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. :-)
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Joanne21 February 2013 at 19:13
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 http://www.igenex.com/Website/
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 http://www.lymediseaseaction.org.uk/
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.
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Lyme Life written in 2009

I started suffering with arthritis in mainly my large joints especially my knees 6 years ago. The symptoms varied and I remember saying that every joint was affected except my elbows to one doctor. I was told it would be hormonal and to take the usual supplements cod liver oil or glucosamine ( I would certainly recommend buying shares in the companies producing these supplements) They had no noticeable affect.

All my symptoms deteriorated significantly over a few weeks,4 years ago. Hips shoulders and knees being the worst and I started with muscle weakness in upper arms and upper legs. I had difficulty standing and walking across a room. I was unable to walk upstairs and my husband was making plans to convert to a downstairs bedroom. I had seen 5 doctors and 3 Rheumatologists and put on steroids for Poly Myalgia Rheumatica diagnosis. I had been diagnosed with Fibromyalgia and ME/CFS.

I have X rays and scans showing signs of osteoarthritis and Rheumatoid arthritis. ( later note.- the X rays done some years into treatment showed my hands completely normal no signs of inflammation or RA confirming how they felt - normal) I have been retired early from the Civil Service having lost my job not to mention my earning potential. My illness seemed to progress through my body not affecting the same joints left to right at the same time. I had bursitis in left hip, right hip, left elbow. I had synovial thickening in both wrists. At that time I could not lift and hold a magazine so lifting a kettle I could only do if a third full and with two hands. Each joint in my hands fingers feet and toes were affected. I had swallowing difficulties and many other symptoms. None of this describes the endless and awful pain whenever I moved or the tiredness but inability to get quality sleep.

Two years ago my GP gave me Amoxicilin for a sinus/throat/chest infection. All my arthritis symptoms improved. The course ended the symptoms deteriorated I started a second course the symptoms improved. The improvement was more significant than when I had started taking steroids. This led my GP to suspect Lyme Disease. I laughed because we do not travel abroad but she said they had had other cases in the surgery in the early stages of tick bite and Erythma Migrans rash. She said but you have not had a bite. I said oh yes I have I had two on my ankles with rashes, March 05 this was confirmed on her computer when I had seen a locum doctor. My worst symptoms were waking up feeling rigid and having to painfully flex every joint in my body before struggling to get up. The only other time I had experienced this was in May 2003 during a flu like illness like no other I had ever experienced. At that time I had a bite and similar rash on my right foot which lasted like the other rashes about four weeks. I had also consulted the surgery and it was dismissed as a virus. I walked our dog daily in the woods adjacent to our house where the deer roam, prime tick area. Thus started my very lengthy search about Lyme Disease leading me through Lyme Disease Action to a doctor who specialises in this illness. He confirmed my GP's suspicions. I never had a positive blood test but then they are antigen tests and there is much research that shows they are unreliable. In my case the year of steroids and many weeks antibiotics could have affected the results. So with a clinical diagnosis and following ILADS International Lyme and Associated Disease Society guidelines I continued on antibiotics for two years. Both my doctors continued to treat me despite of Health Protection Agency advising against long term antibiotics. I am now nearly 100% recovered I have no pain or muscle weakness. I can walk upstairs something I could not do for three and a half years. I can garden do house work and live a normal life. I still need to pace myself and with only a few months to 60 will not be looking to return to work. Life is such a joy. Sadly there is much controversy about Lyme Disease and doctors in UK are taught that it is so rare. Well where I live in Guildford I have been in contact with a dozen other people with it so perhaps not so rare as HPA would like us to believe. I am in touch with nearly 2000 other patients through a chat line Eurolyme most had been misdiagnosed with several other illnesses. Look at UK charity Lyme Disease Action if you want to read more about this illness. There are many MP's taking an interest in the problems surrounding diagnosis and treatment see above charity links into a recent meeting at the House of Commons.

Thank goodness there are some thinking doctors around who have courageously treated me against opposition and I have made such a miraculous recovery albeit rather a lengthy one. One day there will be many more people who are helped with their chronic illnesses when IDSA starts taking note of what our courageous LLMD’s are doing following ILADS Guidelines.

ME/CFS, Fibromyalgia, Poly Myalgia Rheumatica, Arthritis, Bell’s Palsy, MS,MN, ALS, Parkinson’s, Alzheimer’s, Heart Block, Stroke, Psychiatric, gastric problems the list is endless. Not all suffering from Lyme Borrelia but how many are even properly assessed for it.

UPDATE

UPDATE 10 January 2012