Page 1 of 5 123 ... LastLast
Results 1 to 10 of 42

Thread: MND/ALS v LYME DISASE

  1. #1
    Forum Member Alienista606's Avatar
    Join Date
    May 2011
    Location
    Chatteris,Cambs
    Posts
    314

    MND/ALS v LYME DISASE

    what You thing abbout this??
    try to intrest my neuro and people from DeNdRoN and.....nobody listened.....


    http://lookingatlyme.blogspot.co.uk/...urone-lou.html
    Max

    @@@@@@@@@

    MND is stowaway on My life journey.
    Take free ride but I'M DRIVER HERE!!!!

    @@@@@@@@@

  2. #2
    Forum Member roy's Avatar
    Join Date
    Mar 2012
    Location
    nettlebed oxford
    Posts
    1,035
    Hi Max,

    The interesting point is that this guy had the treatment over eight years ago! cant help thinking its a bit like the stem cell treatments-seems to be some hope but also appears out of reach. Good for you mate for finding this.

    Roy.

  3. #3
    Forum Member pete's Avatar
    Join Date
    Oct 2011
    Location
    South Staffs
    Posts
    2,295
    Morning Max,

    Well what can you say, This is the best report I have listened to so far, quite apart from the possibility the Doctor has no doubt proved what many thought for a long time,that we all get dumped under the ALS heading ,I doubt I was ever tested for Lyme or much other than run of the mill standard tests, either down to costs or just not asked for by the neurologists, and he has proved it takes a lot more than the time given to us here within the constraints of the NHS and never more than now , but it certainly makes you think Max what if ???. Thank you for posting , I will mention it at the next appt , but doubt I get any more interest than you have had shown.

    Regards
    Pete
    All I need is a miracle

  4. #4

  5. #5
    Forum Member Alienista606's Avatar
    Join Date
    May 2011
    Location
    Chatteris,Cambs
    Posts
    314
    and what's more my gp thing we haven't problem white Lyme in uk so what about this?

    Max

    @@@@@@@@@

    MND is stowaway on My life journey.
    Take free ride but I'M DRIVER HERE!!!!

    @@@@@@@@@

  6. #6
    Forum Member
    Join Date
    Nov 2012
    Location
    Guildford UK
    Posts
    16
    Hi

    I noticed your post came up on my blog dashboard that you had been discussing this.

    This research in this field is slow to emerge and so do not expect to get too much interest from your Neurologists. Dr Martz has still not published and it is often slow to get such research published. There is a huge controversy about Lyme disease, but those who are prepared and able to do some reading around the subject soon learn there is abundance of science emerging to show early beliefs to be wrong.

    Sadly in the UK we have been tainted by the controversy in USA and rigid guidelines set out by the IDSA - in reality in Europe we would do better following the DBG or German Guidelines where Lyme Disease is concerned, because we have other species of Lyme Borrelia in Europe than in USA. Sadly though for many years the 'expert' at the HPA has been pushing her opinions onto all the medical profession in particular Consultants in Neurology, Infectious Diseases and Rheumatology so much so that they generally phoo phoo Lyme and rarely even test for it in UK. This expert went rather too far and the few handful of doctors in the UK who privately treated patients on longer courses of antibiotics were reported to the GMC because they did not follow her advice/guidelines. Thankfully the GMC realised they had landed in a huge controversial field of medicine and decided that it was not their role to arbitrate. The doctors were not called to a fitness to practise hearing and the 'expert' was retired. Testing for Western blot for Lyme is now being done at Porton Down - that is if you are fortunate to get a positive ELISA at a local lab. The ELISA misses ,more than 50% of cases and the Western blot is not much better. Lyme essentially should be a clinical diagnosis according to those doctors experienced in this field( Treating thousands of cases not just the odd one or two uncomplicated cases our consultants might see)
    In many cases it can be the reaction to antibiotics that help support that clinical diagnosis however that is not simple either because different antibiotics work on our body differently depending on the symptoms some penetrate our nervous system better than others. Patients with Lyme disease experience a herxheimer reaction when they take antibiotics Dr Martz points out that it is important to take treatment slowly because if that herx is too severe it can lead to permanent damage. However once passed the herx, continuing treatment can relive symptoms but only over a long period of time.

    Roy you make an excellent point about stem cells- I hear increasingly about the use of this in various illnesses but if disease is being driven by infection and although Lyme is bacterial it is often accompanied with many other co infections some opportunistic as found in many chronically ill patients but others can be passed along with Lyme with the initial infection. So it is my understanding that if patients can have their underlying infections cleared and them be treated with stem cells to help recover that will one day be the treatment for many diseases. Stem cells alone will not clear an underlying infection and so improvements may not be lasting.

    Back to Lyme Disease- it is far more prevalent here in the UK than doctors realise -(I have 3 neighbours within 200 meters of my house in Guildford all positive NHS tests for Lyme) I am in touch with several doctors and a couple of consultants who realise that long courses of antibiotics are needed for many patients- that was their experience when they or their family member became ill- they like us had struggles to find NHS doctors to treat them and some traveled to USA for specialist care.

    HPA figures for positive tested cases is only about 1000 for 2011 England and Wales but it is considered that that figure is likely x10 for various reasons. In Germany 1 million cases of Lyme have been reported 2012 ( Ticks travel on birds not just small mammals or large ones and so to have such a difference in numbers is unlikely, studies on ticks in UK suggest the problem is likely far bigger than currently thought)
    The tiniest tick is the size of a poppy seed and so we are not always aware of being bitten, 40% of people do not get the classic Bulls eye rash but if you do you are infected although doctors often dismiss it as something else.

    My symptoms were not MND they were mainly arthritis and muscle weakness but you will learn that Borrelia a spirochete is similar to syphilis but far more complex and so it can attack any system or organ in the body causing a multitude of symptoms.

    If you put Eivind Markhus into the search box top right of my Looking at Lyme Disease blog you can watch a video of Eivind who lives in the Netherlands and has MND caused by Lyme Disease - through Facebook I am in touch with Eivind and he clearly knows far more than I do about the links between MND and Lyme Disease ( thanks to Google translate Eivind has shared much interesting information with me and I understand he is in touch with Dr Martz.)

    If anyone who suspects their MND could be an underlying infection possibly Lyme Disease then do lots of research there are links on my blog to some useful sites Lyme Disease Action would be the best resource in the UK, once you have done your research and decide to discuss further your GP is more likely to be the most receptive than a consultant, but if you do manage to get the attention of a consultant and s/he wants to discuss further then I am sure Dr Martz would be open to discuss Lyme Disease/MND research findings with her/him or they could start by discussing with Lyme Disease Action charity.

    The presentation from Dr Martz is available on DVD from Lyme disease Action charity - it was presented at the London ILADS conference in 2010 which I was privileged to attend and was able to meet Dr Martz and listen to his personal story and research.

    My very best wishes to all of you in finding the cause of your health problems and treatment that works for you.

  7. #7
    Forum Member pete's Avatar
    Join Date
    Oct 2011
    Location
    South Staffs
    Posts
    2,295
    Hi Joanne,

    Thank you for your post, At last we have a reference, to start from, I think quite a few of us have had doubts about our diagnosis, and we can now explore another cause, for me at least I have more of a link to ticks, having fed the sheep living in the fields nearby for a good few years along with ponies and foxes, so maybe ,who knows, thank you for posting a very interesting item.

    Regards
    Pete
    All I need is a miracle

  8. #8
    Forum Member Alienista606's Avatar
    Join Date
    May 2011
    Location
    Chatteris,Cambs
    Posts
    314
    wwooww nice..
    only one mor what I found is problem not only whit Lyme but all co-infection.
    some say its good idea to have immunology profile don for founding all anomaly.
    But some from ALSTDI say....
    Lyme treatment is dead road and on another side ..... Is ALS caused by an infection?.....so make me confused.....
    Max

    @@@@@@@@@

    MND is stowaway on My life journey.
    Take free ride but I'M DRIVER HERE!!!!

    @@@@@@@@@

  9. #9
    Forum Member pete's Avatar
    Join Date
    Oct 2011
    Location
    South Staffs
    Posts
    2,295
    Hi Max,,

    Well they would ,the best they come up with is stay tuned ????
    All I need is a miracle

  10. #10
    Forum Member
    Join Date
    Nov 2012
    Location
    Guildford UK
    Posts
    16
    I have been looking at the links you provided Max, thank you very much the one http://www.als-cure.com/ALS.pdf is most excellent.

    I have read other excellent work by the Vaughters' before, but not come across this one.

    Much of what has been said I have read elsewhere but not all. The discussions on the research are excellent. The comments about forums including ALS ones are so true - I recently shared a letter from Eivind on an ALS forum and suffered the wrath of one of their trolls - interestingly the troll had neither Lyme Disease nor ALS but was clearly from the IDSA school of deniers - I left it with the comment that most people were sufficiently intelligent to do their own research and hope they do.

    As to IgeneX they appear to be one of the better labs for testing - ( Some patients suspecting Lyme have managed to get their GP to take bloods and arrange to have it shipped to Igenex direct details on IgeneX website) IgeneX tests are not always positive as is pointed out by the Vaughters, my IgeneX was negative although some interesting Indeterminate bands- I had been on 20 months of steroids and 7 months antibiotics though before testing which was clearly likely to have compromised my antibody response. Mine was a clinical diagnosis and I was treated by an open minded GP and a private doctor specialising in Tick borne diseases based on history plus a visible improvement of my symptoms on antibiotics.

    Much of what the Vaughters write is related to the US but Lyme Disease is an International problem.

    Mike Gregory UK rugby coach was bitten by a tick in Australia and developed Borreliosis ( Lyme Disease) he also developed MND http://en.wikipedia.org/wiki/Mike_Gregory

    Australia are in even worse denial than UK the Health Authorities deny that Lyme Disease can be caught there although there are many ticks and other tick borne infections. Since the death of Karl McManus who had Lyme and MND his widow has done much to challenge the authorities and many cases are at last coming to light of Borreliosis in Australia. http://www.karlmcmanusfoundation.org.au/

    Dr Alan MacDonald pathologist( mentioned in the Vaughter paper) has done fascinating research with Borrelia - he was the first to identify Borrelia in the brains of patients who had died after Alzheimer's, later confirmed by Judith Miklossy - further research needs to be done in that field. Dr MacDonald also found that Borrelia forms bioflims, later confirmed by Eva Sapi and this has recently been published in PlosOne. Biofilms are just one reason why Borrelia can evade our immune system and antibiotics making it far more difficult to treat. ie another reason for persistence - an earlier paper was published by Embers and Barthold et al on the persistence of borrelia in monkeys- non human primate study - Barthold ( previously one of the nay sayers or denialists ie IDSA group) has now found that borrelia persists in mice, dogs and monkeys - he now says that persistence is the norm. Dr MacDonald developed an Alzheimer's like illness himself and was unable to recall his work, he retired. However recently he has been posting on lymenet Europe and has made a remarkable recovery on treatment- he discusses his and other work in the field of Borrelia in the most fascinating detail - dismissed by the usual trolls he skilfully wipes the floor of them and actually all they serve to do is provoke even more fascinating observations and research. Not only has Dr MacDonald made such an amazing recovery he has returned to work in the field of Alzheimer's research.

    Sorry I go on.

    What I hope is that anyone reading this thread will read in full the paper by the Vaughters.

    Inmed website as mentioned above and the work of Garth Nicolson is another worthy resource.

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •