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Alienista606
16th November 2012, 08:41
what You thing abbout this??
try to intrest my neuro and people from DeNdRoN and.....nobody listened.....


http://lookingatlyme.blogspot.co.uk/2012/03/recovery-from-als-motor-neurone-lou.html

roy
16th November 2012, 10:28
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.

pete
16th November 2012, 10:32
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

Alienista606
16th November 2012, 14:32
hi .... want a more????
http://www.als-cure.com/

http://www.als-cure.com/ALS.pdf

http://www.ncbi.nlm.nih.gov/pubmed/2334308

http://www.immed.org/NeuroDiseases/SIBI.Myco.Clam.Borr.NeuroMS.ALS.BhavDis.pdf

http://lymehandbook.com/index/400-misdiagnoses/450-lyme-als/

http://www.alsforums.com/forum/people-als-pals/574-connection-between-als-lyme-disease.html

http://www.ilads.or

Alienista606
16th November 2012, 14:36
and what's more my gp thing we haven't problem white Lyme in uk so what about this?


http://www.youtube.com/watch?v=4ALgOikmjCw&feature=player_embedded

Joanne60
17th November 2012, 11:39
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.

pete
17th November 2012, 12:07
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

Alienista606
17th November 2012, 12:08
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.....

pete
17th November 2012, 13:36
Hi Max,,

Well they would ,the best they come up with is stay tuned ????

Joanne60
17th November 2012, 14:22
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.

Claire McArthur
21st November 2012, 14:28
Hi all, I spoke to my colleagues in our Research team to see if they could add anything to this thread:

This topic has recently been investigated by an international group of clinicians who investigate off-label and unproven treatments on behalf of people with MND called ALSUntangled.

ALSUntangled have published two reports on Lyme disease which explore the scientific basis of the claims that MND is caused by Lyme disease and also the claim that Lyme treatment can treat MND. These reports are published in the peer-reviewed journal ALS, which means that they have been reviewed for its accuracy and integrity by independent researchers before it could be published.

In their original Lyme disease evaluation in 2009, they found no evidence for an increased frequency of positive Lyme tests in their cohort of 4,000 patients (from the US and Ireland) with a confirmed diagnosis of MND as compared to the normal incidence of Lyme disease across America. They also found no evidence that any patient in their cohort with a positive Lyme test had their MND cured by appropriate treatment for Lyme disease.

You can read more about this review here: http://www.alsuntangled.com/pdf/ALSU1.pdf

ALSUntangled then received further enquiries specifically about an online book called ‘When ALS is Lyme’ which promotes the connection between MND and Lyme disease and claims that Lyme disease treatment can be used to successfully treat MND. ALSUntangled reviewed the information described in this document on behalf of people affected by MND.

They conclude that the online book “fails in its attempt to argue that there is a connection between ALS and Lyme disease”.

ALSUntangled’s full report on ‘When ALS is Lyme’ can be downloaded for free: http://informahealthcare.com/doi/pdf/10.3109/17482968.2012.717796
.

Alienista606
21st November 2012, 16:44
Tx Claire

Joanne60
21st November 2012, 22:19
This topic has recently been investigated by an international group of clinicians who investigate off-label and unproven treatments on behalf of people with MND called ALSUntangled.


.

Claire Thank you for posting this and clearly you are just doing your job in warning patients.However the research on Lyme disease is moving at quite a pace especially this year. We are not talking about just any bacterial infection we are talking about a spirochetal infection - one that is more complex than syphilis and capable of all the health issues that syphilis can cause including final stages of dementia.

This year research was published showing Borrelia persists despite antibiotics in dogs, mice and non primate monkeys - Steven Barthold NIH researcher says that is the norm.

Just published is that Borrelia can form bio films one mechanism for persistence.

Even the IDSA authors who wrote the IDSA restrictive 2006 Lyme Disease Guidelines, publish research and write patents that say the testing for Lyme disease is un reliable and that it is a difficult infection to treat because it persists.

All that the research says - ALSUntangled Update 1: Investigating a bug (Lyme Disease) - that you quoted is just repeating the commonly held views on Lyme Disease by the majority of doctors based on the opinions of the IDSA authors of their 2006 guidelines. There are many uncertainties with Lyme Disease, which is why the James Lind Alliance ( funded by the National Institute for Health Research) are currently involved with Lyme disease Action at reviewing the research to identify areas of uncertainties. The situation in Europe regarding Lyme Disease is very different than in USA and the review of the IDSA Guidelines made that clear distinction.

No one suggests that all ALS is Lyme but current testing methods even according to the NHS test kit manufactures says that a negative test does not exclude Lyme Disease.

Patients need to be aware that all is not so clearly defined in medicine especially in the matter of such stealth microbes as Borrelia and their relation to chronic ill health- many doctors and professors around the World are beginning to support ILADS views and oppose the IDSA view eg. Prof Peronne Infectious diseases doctor at UCHG in Paris and Luc Montagnier Nobel prize winner for his work with HIV.

Who would have believed that all those operations for stomach ulcers a few years ago could have been avoided by just treating the underlying condition another spirochetal bacterial infection - Helicobacter pylori.

Had I followed the commonly held views on Lyme Disease I would never have been treated on long term antibiotics and no doubt would not have made the significant recovery that I have done. I was treated because I improved on the antibiotics and deteriorated when they were stopped.

Several of the doctors and Consultants that I have spoken with who support the ILADS view have themselves or a family member been infected and had to step out side of the NHS to get properly treated.

I can only say what I said before if a patient suspects that Lyme Disease could be causing their ALS/MND symptoms then they need to properly research that disease before speaking with their doctors.

Joanne60
23rd November 2012, 16:59
I was rather disgusted at the poor quality of the ALS Untangled report they seemed to considered the IDSA recommendation for treatment sufficient( usually a couple of weeks antibiotics) and they were expecting success to be a complete reversal of all symptoms. I posted it on Lymenet forum - this was the response from an eminent Pathologist in this field of research who discovered Borrelia forming Bioflims 6 years ago, although only recently published in PlosOne.

by inmacdonald » Fri 23 Nov 2012 17:22

ALS-like Lyme and ALS not related to Lyme Neuroborreliosis:

Let us reduce the discussion to progressive incapacitating Motor Neuron Disease.
Dr William Harvey ,now deceased from a Heart Attack in year 2012 an buried with honor
at the Cemetery of the US Air force Academy, developed Motor Neuron disease,progressive type.
He diagnosed himself ..He started a course of Long term antiborrelia antiBabesial antimicrobialtherapy.
Dr. William Harvey experienced a reversal of his motor neuron disease after long term antibiotic therapy.

Dr David Martz developed progressive motor neuron disease. He was diagnosed by several consultant neurologists as "most consistent with Amotropic Lateral Sclerosis. His children searched the Internet
and found the newspaper reports of Dr William Harvey's results with the success of long term antibiotic
and antibabesia therapy in motor neuron disease. Dr David Martz became a patient of Dr Bill Harvey.
Long term Therapy with antiborrelia/antibabesial medications produced a reversal of his disease. but from time to time, Dr David Martz must restart the Dr Harvey Protocol to maintain his recovery.

Dr. David Martz and I had a conversation on Nov 3, 2012 in Boston. We discussed our "MarkTwain" moments. Dr.Martz has since his recovery, treated multiple patients with Antibiotics/antibabesial medications and has noted reversal of motor neuron disease in his patients. He is drafting a manuscript
to report these patients. It is likely that the completed manuscript will be published in a Scandinavian Neurology Journal, just as his case report was published. It is noteworthy that previous to the acceptance of
the Harvey Martz manuscript in a Scandinavian Journal, it was reviewed and rejected by multiple journals
based in the USA and in the United Kingdom.

Any therapy which is capable of reversing the untreated natural history of Motor Neuron Disease
is Press-worthy. The untreated natural history of Motor Neuron Disease is a short pathway to death by
suffocation.
Above all , do no harm.
Best,
Alan B> MacDonald MD

Link to Manuscripts and to file
https://www.dropbox.com/s/gtr1bicr872n0 ... 1600-4.pdf

http://www.lymeneteurope.org/forum/viewtopic.php?f=6&t=4362

john
23rd November 2012, 18:12
Hello Joanne,

I admire your persistence but do not see a conspiracy and without that why would the article be rejected by multiple journals in the US and UK?
The big pharamaceutical companies have nothing to gain so why would they suppress publication? Governments have nothing to gain ( certainly not in the UK) where I am sure they would like everyone cured and off their payroll.
I can only imagine the rejection was because the data has not been tested rigorously enough.

I hope you are right and this could be a cure for some, if not all patients. I don't know if you have ever looked at alstdi website which is us based and linked to a research facility. There has been much debate about the use of antibiotics and links to Lymes disease. Nobody there wants to reject any possible cure but there seems to be much scepticism.

john

Joanne60
24th November 2012, 14:31
Hi John
I do not say there is a conspiracy because I do not believe there is.

What there is is a reluctance to read thoroughly all the emerging research - most doctors do not have time or inclination and just rely on each other to do the spade work for them. So when something comes along that turns previously entrenched beliefs completely on their heads there is quite clearly much skepticism.

All countries have deffered to the IDSA authors of the 2006 Lyme Disease guidelines - despite much contention against these guidelines the actually review that happened a couple of years ago pushed into by the Attorney general Blumenthall's investigation still only considered Randomized Placebo Controlled trials - just 4 only, which in themselves have been much contested. They ignored a huge body of research that was presented to them. In fact the Klempner Randomized Placebo Controlled trial was meant to go in hand with the monkey study that Embers et al ( including Barthold ) and which was only published this year more than a decade after the Klempner - it contradicts the findings that were drawn from Klempner.

There is plenty research to read and there are many case histories that show the IDSA restricted view of Lyme Disease highly questionable to be polite. In fact there is their own research that proves their views and opinions in the IDSA guidelines wrong. Ie what they say in research papers and what they say in patent applications is opposite to what they say in their guidelines. Some of the authors of those early guidelines have since changed their view and opposed those guidelines. Donta, for one but there are others. from IDSA.

In simple terms we do not have a good reliable test in all stages of this disease - there are different opinions on sensitivity ( specificity is not in question). Borrelia suppresses our immune system and it is commonly known that any test that looks for antibodies may not be able to find them - immune compromised as many chronically sick patients are, low levels of antibodies in the blood, Borrelia prefers collagen and doesn't stay in the blood in large numbers. Research shows there are undulatory immune responses. Borrelia is well known for changing outer surface proteins this is another mechanism for evading our immune response. - In early 1980's Pachner research injected Borrelia in the tails of a mouse - 4 weeks later it was harvested from the brains of the mouse. It had morphed so what was injected was different than that found in the brains. Many patients that have tested negative have at a later date tested positive.

Then of course there is the question of long term antibiotics for patients with Lyme Disease - there are researchers that support that Borrelia is a relapsing disease, persistent. It has a slow replicating cycle on a par with TB and Leprosy,it replicates 24 hourly unlike many organisms doctors commonly deal with. It also goes into dormant cystic forms from which it can replicate in a four weekly pattern - (in fact many patients find that documenting their symptoms with a daily diary eventually shows that 4 weekly cycle- this happens whether being treated or not being treated if the infection is still present and active) Borrelia is a very complex organism - it is a spirochete so anything known about Syphilis can be applied to Borrelia(excepting the syphilitic cankers) but actually it is far more complex than syphilis. Treatment for all three of these illnesses is complex and requiring tri-therapy with antibiotics over a long period of time. Judith Miklossy research ( she found DNA for Borrelia in the brains of patients who had died with Alzheimer's) she says on her website that in time treatment for Borrelia will be tri therapy - currently no one knows what the exact therapy needs to be to help everyone - many of us have been helped considerably on long term antibiotics - when our health departments start to recognise the problem and investigate treatments no doubt better treatments will be found

I did not have time nor would have wanted to continue living with the degree of pain and incapacity while our research decided what to do - I was lucky antibiotics clearly helped me and the longer I took them the more well I became. There will be many people who remain undiagnosed with Borrelia and even when they are they are refused treatment even when that treatment has been helping them. In the case of a friend of mine who died last year in her early 30's with MND leaving two small children. Diagnosed with Lyme Disease following a known tick bite and bulls eye rash her neurologist and doctor refused to treat her on long term antibiotics - her private doctor was forced out of practice and so could no longer help.

Yes I am well aware of the skepticism but as I said in an earlier post there are many uncertainties in Lyme and that is why UK charity with the James Lind Alliance funded by National Institute for Health are currently reviewing the research. http://www.lymediseaseaction.org.uk/

Best wishes Joanne

Joanne60
24th November 2012, 14:53
John

Just one more point you mention Governments - Governments do what their Health Departments tell them when it comes to illnesses and for many years the adviser from HPA was Dr S O'Connell - she worked very closely with the IDSA group who wrote the IDSA guidelines. She clearly was so determined she must be right that she reported several doctors to the GMC for not following her guidelines - they dared to make clinical diagnosis and treat according to their patients needs and responses on longer courses of antibiotics than she (without seeing the patient) believed necessary.

At this point I must remind anyone reading this that we are talking about Guidelines - they are not mandatory, doctors are able to make their own judgments when faced with a patient. This point was also stressed at the IDSA review hearing.

The GMC decided that it was not their role to intervene in an area of medicine that was controversial. They did not take fitness to practise cases against the doctors.

Sue O'Connell is now retired.

The testing for Borrelia has been moved to Porton Down - they at last are actually talking to the charity Lyme Disease Action and hopefully listening.

The Countess of Mar a long time supported of patients with ME and CFS has more recently become very knowledgeable about the controversies over diagnosis and treatment of Lyme Disease patients - she has been asking many important questions in Parliament she is not the only MP or Lord who has grave concerns over the controversy where Lyme Disease is concerned.

Meanwhile research marches forward - doctors need to listen and patients need to be their own best advocates.

Joanne

john
24th November 2012, 15:08
Thanks for your information. I am sure evryone hear would wish for a treatable condition . I am not sure what you are hoping for. Without a diagnosis doctors are reluctant to prescribe anti biotics despite all the reports of over prescribing - I don't know how anyone gets antibiotics they don't need given the medicals professions reluctance to give them to mnd patients who may need them. Given the absence of anything else that might cure the disease it seems to me to be a no brainer but I tried in vain with my wife to persuade the medical people caring for her to consider Lyme's but they wouldn't. They quote the difficulties that could arise if you no longer respond to antibiotics if you contract other conditions. I never got any answer when I asked what condition out there could be more life threatening than mnd!!!

Good luck with your mission. You are going to need it.

john

pete
24th November 2012, 16:26
Hi There John,

Have to admit this is a really good thread, and Joannes position is clear ,pity our doctors are not so keen in at least trying to examine just maybe there is a point to explore that bit deeper into the patients diagnosis, I know for myself i would love to be as confident as my Team who i see ,but at the back of my mind there is a doubt ,I just wish they felt it too, maybe they have little funds or just not inclined to spend time on what may prove to be false hope, Having said that if and when finally peg out and they find out it was not MND all along , I am going to make sure i come back and haunt them all !!!!.

pete

john
24th November 2012, 17:06
Hi Pete,
I am not sure if there is any mileage in the theory about Lyme's but as you say given the alternatives you would think it would be worth a shot.
If it provides a solution for just one person it has got to be less expensive for the country's finances. On alstdi there is a thread going that is theorising that anitbiotics could be a solution to a lot of mnd. The trouble with DIY and antibiotics is that they are not that easily come by. When I was researching I seem to recollect that ceftriaxone, which has recently been trialled for mnd, was used to treat Lyme. It was administered intravenously though and that is a big ask for anyone at home unless they have a medical professional in the family willing to assist. I also recollect it is not a week course. It requires use over a long period of time.
In america it seems they can almost get their doctor to prescribe any drug they want .Not sure why that would be unless its just the fact that the patient is paying.
Hope you are enjoying the day and have battened down the hatches ready for tomorrow's weather.

john

Joanne60
24th November 2012, 20:02
Sharing from a friend with a link to a post on my blog about him in 2010 http://lookingatlyme.blogspot.co.uk/2010/08/tickbite-lyme-disease-motor-neurons.html
Google Translate so apologise for the English but you get the drift.

Dear Joanne
would you please translate this to English? Its a column to have been underwritten wooden i will send to ILADS guys! borreliasyk I've been in 12 years.

Like many others, I have not been believed that the Norwegian health care system that diagnosed me with ALS. I've driven trial twice. Lost both. This despite the fact that I tested positive on the Western Blot test, tested positive at the Vestfold Hospital and found Borrelia DNA in my blood in 2009.

I sometimes have a feeling of being involuntary participant in an academic parlor game. It's as if most of the health care system sees this as a game - and not as a prolonged, intense and bitter struggle for life and health. , we have a large group of seriously ill patients who have good reason to believe that a Borrelia infection is the underlying cause - but are banned from using the device with a negative antibody test (often Elisa) as justification.

In 12 years I have accumulated knowledge about the disease, but it seems that doctors have a monopoly on qualified opinions. Because of their status, they can decide what is the scope for credible evidence to justify saying their opinions.

If they encounter documentation that goes across their opinions, they may with ease doubt about it. Or so they know not to studies and publications that make their arguments fall through. The latter is probably hard to recognize, so it will be easier to call documentation implausible.

I refer to the magazine's story about how Borrelia among others Dr. Jon Sundal attended. He was also an expert witness against me in the trial. I'm not looking for the actual content of the program, but there are general attitudes Sundal have, I want to life!

One tries to persuade public opinion that good western blot tests often give false positive responses, which is incorrect tests based on several numerical markers that identify Borrelia bacterium. Some markers are nonspecific and may cross react with other bacteria, while some markers are specific borrelia "fingerprint" - markers. Mon. require a certain number of markers to be regarded as positive for declaring the test as positive.

This will make it easier to evaluate the tests. requirement to have a positive test, three of these specific markers.

The American Health Authority (CDC) has recognized my test as secure positive. micrograms recombinant western blot (immunoblot) containing antigen that captures all strains of Borrelia bacteria. It does not Elisa! . Recommended Vestfold Hospital (SIV's) MIKROGEN recombinant western blot that is the best test.

The problem is again money. The test is expensive and time consuming. This must be funded! SIV has expertise and a highly skilled specialists!

Sundal also claims that one must have inflammatory cells in the spinal fluid of having neuroborreliosis. This Slovenian researcher Franck Strle proven wrong. He is with Hunfeld Fingerle Wilske and Stanek among tungtvektekterne in Europa.Også laboratories in Norway have discovered this! Unfortunately, doctors are not updated for this No, absolutely no Norwegian attending their seminars! Only a retired doctor, Per Bjarke.

False negative tests dominate. Therefore, it is dangerous to allude that Elisa tests are good enough. Lori Bakken conducted a double-blind study showed that not only was Elisa inaccuracies between competing laboratories, but the same laboratory showed different results on the same sample. Only 45 laboratories had a score of 55 percent.

Another study was conducted by the College of American Patholigists. The result was terrible. It was similar to the same number of false positives as false negatives. Only 45 percent of the 516 laboratories that tested showed the correct answer. It entered that stage I of the disease discovers Elisa 20-50 percent of cases and in stage II / III 70-100 percent, depending on the tests used.

Some argue that sensitivity in stage II / III is not more than 20-80 per cent. The tests used in the cerebrospinal fluid in Norway today finds no more than 50 percent: 70 percent for garinii and 10 percent for afzelii, which is the most common borrelia strain circulating in Norway due to false negative results are numerous.

The bacteria manipulate our immune system so that we do not produce antibodies. Antibodies are very late in forføpet. The bacteria can lie in niches inside the cells of the organs where it is hidden from the immune system. The bacterium converted to cyst forms with new antigens that are not found in the tests available today.

The tests used today are quite specific as false positive is not a big problem. False negatives, however, problematic. This is why clinic and patients' own history is so important in the overall assessment. I think Western blot should be emphasized rather than as indirect Elisa test. The sensitivity has been discussed regarding western blot, but specific band in the test should be a clear indicator of Borrelia infection.

ANTIBIOTICS For chronically ill have a pulsating regime (periodic time) high doses of ceftriaxone IV has been a success. This was published in the early 90's and was confirmed on MLDA Lyme congress in 2002. treatment should be individualized on both the dosage and length.

Stricker refers to studies where long-term antibiotic treatment is far better than the standard treatment. Klempners standard (Dr Mark Klem opens conducted a study on the treatment of patients. Though the study had clear deficiencies, it has been accepted as standard. Probably why we have several cases of illness due under treatment) in a month ceftriaxone IV and two months of oral doxycycklin, had little effect on chronic borrelia or come late disease.

Increased improvement the longer treatment duration was noticeable. This is published in the CID that is a IDSA (Infectious Disease Society of America). Looks like IDSA turns when they choose to publish this. So in these cases must be treated for months and even years with antibiotics.

Change of combination treatments may be necessary. Must be individualized. It is vital to acknowledge this since late come and chronic Borrelia ill probably have chronic infection combined with additional infections. Therefore, required prolonged treatment. Therefore I genuinely sorry when doctors refuse patients treatment! There is no reason to doubt that prolonged treatment helps some.

According to statistics I should have been dead 10 years ago! I'm probably the only one in the world who has lived with ALS diagnosis in 12 years, which can stand on their feet and do not need a respirator! Court, the appeal board patient and their experts find it more probable than that I have borrelia.

Fortunately rescued antibiotics I received in the USA for 03 my life! I had to go. Here at home did not help! Health care is often concerned with the ethical dimension. As I see it, it is the exclusion of Lyme disease patients is the greatest ethical challenge. These patients (assuming they indisputably have very severe disease) are invited ME diagnosis or ALS without other evidence than that it can not be anything else.

It may NOT be ethically problematic to make treatment studies in this group of patients. They get anyway no qualified help. I will fight for us, as long as there is life in me.
Eivind Markhus

Graham
24th November 2012, 20:21
Hi Joanne,

Thank you for your contribution. You are very welcome here. You have opened my mind.

I saw the Lyme disease thread, and ignorantly thought, that old chesnut again. More fool me.

I have reason to think, and have posted in years past, that my MND was caused by infection. I have had direct contact with 3 other people who developed MND. Laterly my uncle whom I frequently met now has PSP. Mycoplasma fermentens is the other suspected neuro pathogen. What are your thoughts on mycoplasma infection? What could be distinguishing features of each infection?

Joanne60
24th November 2012, 22:32
Hello Graham
Thank you for the welcome it is much appreciated.

I see you come from my home town Bolton. My Uncle who lived in Bolton died a few years ago having had MND I was unaware of the possible links with infection when he was ill.

I am well aware that Mycoplasma is often another underlying stealth infection Garth Nicolson has done some excellent work in this field and his work overlaps some of the work the Lyme Doctors are involved with. I posted an interesting video interview of Dr Bransfield and Prof Nicolson on my blog recently but not related to MND/ALS more to do with the neuropsychiatric affects of infections at different stages of life fascinating. I have met Robert Bransfield twice now at conferences in UK and there is much our doctors could learn from him two of his presentations can be found on Lyme Disease action website conferences 2008.
There was a link to Garth's website earlier in this thread.

I understand that Eva Sapi researcher from New Haven found Mycoplasma in ticks and it is commonly found as a co infection in patients with Lyme disease. Garth believes it to be a common contaminant in vaccines. My understanding is that with these sort of stealth infections they seem to work in synergy with other infections certainly the Biofilm communities can be different infections and the Fry Protozoa is another interesting direction although still in the early stages so who knows how that will pan out.

I was interested to hear Prof Luc Montagnier's ( Nobel prize winner for work with HIV) views - he believes many chronic illnesses are being driven by stealth infections usually bacterial - as his colleague Prof Perronne says we need better testing. If we treat the underlying infections long term patients get better. These two eminent Professors were involved with research with 10 doctors treating 200 children who had Autism on long term antibiotics - 4 out of 5 their symptoms improved. In UK it is 1 in about 38 kids with Autism.

Sorry I digress. Most people dismiss Lyme because they are looking for the early symptoms tick bite, bulls eye rash - well it is possible to have had those many years earlier and only to develop serious symptoms 10,20,30 years later in life - Also we do not always realise we have been bitten the smallest tick being the size of a poppy seed. the first tick I found I thought was a dog flea and had to scratch out of my foot with my nail - it walked across the floor and I thought what a funny flea because of course fleas jump. I dully developed a bulls eye rash but was oblivious of the significance at that time thinking Lyme to be only in US. I have removed fully engorged ticks from our dogs regularly over the last 30 years by squidging with my fingers totally unaware of the risks of becoming infected. Last spring there was a fully engorged tick on the kitchen floor. There are 3 neighbours with 200 meters of my home all with positive NHS tests for Lyme we all border woodland.
I am in touch with a family in Horwich their daughter was bitten by a tick visiting Rivington developed Bells Palsy and devasting neurological pain and arthritis she has been sick for many years with three serious operations on nerves in Face and also base of brain before they discovered she had Lyme Disease her Consultant said we would look a load of Charlies if it did turn out to be Lyme Disease. She tested Positive for Lyme. there are other people I have spoken with from the Bolton area that I met at conferences.

You ask about distinguishing features I think there are many similarities, I think the four weekly cycle is classic of Lyme but not other infections, interesting many of the protocals of tri therapy seem to target many of the co infections. Richard Horowitz seems to have a good handle on treating Lyme he was invited to speak before the CDC equivalent in China recently about Tick borne diseases- they have a big problem 20-30000 cases reported a year but likely to be 10x that figure. Recent figures from Germany were 1 million for 2012.

I watched a video last night from a Lyme doctor in Missouri Dr Charles Crist he says that his ALS patients are the most difficult to treat. Nothing is easy in treating Lyme there are no cookie quick fixes and even the IDSA say that in early Lyme Disease there are about 20% treatment failures - what happens to them in later life?

This is a link to Horowitz presentation not about ALS/MND but interesting and mentions Mycoplasma - I particularly like his comments on Rheumies treating patients on minocyclin and Plaquinil - which may be treating underlying Lyme and Mycoplasma.
http://lookingatlyme.blogspot.co.uk/2012/08/do-you-have-symptoms-that-migrate.html


So much more than the simple illness Steere believes it to be - his views formed in the days when he thought it was a virus and in fact it turned out not even to be a simple bacteria but a spirochetal one far far more complex - now as MacDonald says we need to add Biofilms into the mix and we have a whole new perspective - way beyond the comprehension of a mere Rheumatologist not experienced at seeking out this infection in the lab.

Best wishes Joanne

Graham
25th November 2012, 16:05
Hi Joanne,

Are you aware of any research that links borrelia infection in motor neurons to cellular damage including the mis-localisation of TDP 43?

Further wiki refers to borrelia as a prophage. Borrelia binds to the host cell DNA for replication purposes, buggering the host cell in the process, but hey, borrelia can live to infect another cell on another day!

As you say the lysic cycle can be up to 4 weeks. So infection is a relatively slow process.

Once infection starts, I can imagine it will spread to adjacent cell (Miss Marple).

Sounds like MND (Scotland Yard)

Joanne60
26th November 2012, 12:26
Hi Graham

Too technical for me but you might find some of Miklossy's work interesting
http://lib.bioinfo.pl/auid:36054

her website is http://miklossy.ch/ she is a busy lady and doesn't have time to update her website but may be prepared to answer a direct request, I met her at a conference in UK what an amazing person and presentation she did. Clearly doing much work in her field.

Yes Borrelia is complex - this is an interesting read about Borrelia as a bacteriophage http://books.google.co.uk/books?id=1iHDrzSIcI0C&pg=PA45&lpg=PA45&dq=borrelia+prophage&source=bl&ots=9wWGNysx3f&sig=PTr_RsFvsz68csXfnJwOvUXBMZI&hl=en&sa=X&ei=tF2zUIKWFuel0AWa9IEQ&ved=0CGIQ6AEwBQ#v=onepage&q=borrelia%20prophage&f=false

Joanne

Graham
26th November 2012, 21:43
Hi Joanne,

This is very EXCITING.

As Dr Miklossy says, this field demands urgent research.

Several MND features may be explained:

DNA
In familial MND, known mistakes in genes cause MND.

Borrelia,mycoplasma type infection bind to specific-type cellular DNA, offering a pathway leading to sporadic type MND.

SYSTEMIC ILLNESS VERSUS NON SYSTEMIC ILLNESS
Familial (genetic) causes non-systemic symptoms, purely MND.

Borrelia, mycoplasma type infection may impact other cell types causing other symptoms as well as MND, e.g. RA, CFS

ILLNESS TIMELINES
Familial MND follow broadly set illness timelines, while borrelia, mycoplama type infection offer variable timeline pathways.

ENVIRONMENTAL FACTORS
Borrelia, mycoplasma type infection are caused by ticks and lice and could explain occupational factors. Borrelia strains are geographic specific and could explain why sporadic MND is only prevalent in some parts of the world. Research required.


THE MILLION DOLLAR QUESTION; IN HUMAN CULTURED IPSCs, DOES BORRELIA INFECTION CAUSE MIS-LOCALISED TDP-43? The hallmark of MND.

john
26th November 2012, 22:18
Hi Graham,
You've obviously done a lot of reading today. I have long felt that this may be cause of mnd. In Irene's case she had bites the July before her illness started 6 months later. They were while we were on a sailing holiday in Greece. I discovered Lymes Disease when researching and although the scenario fitted her GP said she had been tested for Lymes and it was negative. I can't help but wonder!
I think I mentioned elsewhere that there had been trial for ceftriaxone which I think found no benefit but when you research it sounds as though long term use is required to get rid of the Borrelia so I cannot see they have given it a fair chance.
I am not sure why the medical establishment can ignore all the evidence which seems quite compelling and I cannot see how anyone can start a DIY experiment. Frustrating as ever.

John

Graham
26th November 2012, 22:59
Hi John,

A single test for borrelia would be wholly inadequate. False negative tests must be considered and up to 10 tests done. The Western blot test is the only test worth doing. So much complacency as we know.
We can tear ourselves apart with, what ifs?

john
26th November 2012, 23:22
Tell me about it!

John

Joanne60
27th November 2012, 10:08
Yes I am sorry we can tear our selves apart with what if's, but currently there are many many patients refused treatment that can help them because Lyme Disease can be underlying cause of many chronic illnesses.

Medicine is slow to move forward and we do not have to sit and wait if we think Borrelia could be an underlying cause.

I mentioned earlier that the James Lind Alliance was working with Lyme Disease Action reviewing the literature and identifying the areas of uncertainties. They have now identified those areas and will shortly be selecting the top 10 priority areas so that eventually hopefully it will lead to research projects.
http://www.lymediseaseaction.org.uk/wp-content/uploads/2012/11/jlasurvey.pdf

The list is long although current guidance from HPA leads us to believe all is certain in the world of Lyme - clearly that is not the case.
The link for LDA charity is http://www.lymediseaseaction.org.uk/ and you can read more about this research.

I have a letter from the Department of Health via my MP Anne Milton ( who has been supportive and has concerns about Lyme Disease) Dept of Health said in their letter that they were working with JLA and LDA on this research - indeed the JLA is principally funded by the National Insitute for Health.

Let us hope that eventually this will lead to a better understanding of the uncertainties among our doctors and Specialists in time but at least this can be shown to our doctors if we consider Lyme Disease to be a possible cause of our illness.

Anyone currently reading this thread who have had some concerns may like to take time to vote on the priority of the 10 most important uncertainties. before 9th December. It may not seem so important to you but I can assure you there are many people and especially a number of young children being denied treatment by NHS doctors because of the current guidance. ( That includes doctors themselves and their families) and those who can afford to are travelling to US or Germany for treatment.

Best wishes Joanne

Jeannie
28th November 2012, 19:55
Hi all, apologise i have not read the entire thread, but wanted to say that I've had two Lyme disease test both was negative.

john
28th November 2012, 20:45
Hi Jeannie,
According to Graham somewhere in the thread the Western Blot Test is the only one worth having. apparently there is a lot of difficulty testing with lots of negatives which should be positive.

john

Joanne60
29th November 2012, 22:01
Even the Western blot has many problems with false negatives for many reasons, although it is frequently said there are too many false positives the reverse is considered to be the case, by doctors in the trenches of treating this disease.

I just posted some research and information on my blog which may interest those reading this thread - it was too much to write here so here is the link http://lookingatlyme.blogspot.co.uk/2012/11/motor-neuron-als-lyme-disease.html
Joanne

Alienista606
30th November 2012, 06:49
jOANNE
yes and to say more.....

http://www.youtube.com/watch?v=EE8gK_cR8VQ&feature=player_embedded#!

Alienista606
30th November 2012, 06:54
have had anyone have contact whit this UK doctors???
cant find him on net...

Alienista606
30th November 2012, 07:04
ups suddenly dr Kurtenbach die in 2009 and dr Sarah Randolph is retired now....but need send her some email in weekend....
BTW any victory whit faithing whit GP to order western blot tests??

Joanne60
30th November 2012, 09:44
Max Yes it was a sad loss to the Lyme community when Kurtenbach died he had been involved with a lot of research around the World and also his research around Bath indicated that the incidence of Lyme was likely much higher than thought here in the UK. I met Sarah Randolph at a conference she complained to me about patients keep contacting her and I have heard others say she was not helpful to their requests.

The U tube features Eivind and it is the person who e mailed me his letter which I copied earlier in this thread. Of course not everyone gets all the multitude of symptoms Dr Horowitz talks about in this u tube although he is 'The' expert in this field. If you think of Syphilis as a model another spirochetal disease - yes it is capable of many symptoms but it is also capable of developing symptoms like ALS as Judith Miklossy says link in my last post. It really all depends on where the spirochetes end up what part of the brain or body they are. Eva Sapi says that Borrelia has a tropism for the brain and you will find some excellent presentations by her on U Tube. Eva Sapi is another researcher who developed Lyme Disease - previously a cancer researcher she changed to researching Lyme Disease - she was the lead author of the recent published paper that Borrelia form Bio films along with researcher Dr MacDonald. I mentioned earlier in this thread.

As to the situation in the UK finding Consultants or doctors sufficiently open minded to the developing research is very difficult and rarely will one make a clinical diagnosis and trial antibiotics, sadly they depend on the testing and then restricted guidance of a few weeks treatment, but it is worth collecting what information relates to you and at least discussing with your doctor.
There are a couple of doctors in the UK who will accept patients privately and consider and test for Lyme, I would not especially recommend them because they are very expensive and it should be our NHS treating us.
Joanne

roy
30th November 2012, 11:14
Hi Joanne,

Firstly just like to say thanks for all of the interesting posts, I have to be honest to say some I find some difficultyto get my head around some of the nuts and bolts,for me like many a new world that I never Knew exsisted.The posts have got me thinking about Ticks makes me itch sometimes,I have what I would describe as a tick picker for my dogs.Not needed to use it often but we always checked our animals point is Im pretty sure I have never had a tick embedded in my skin,I am aware through my experience with removing the from animals that they are a challenge to remove without leaving the head in place which can also cause infection.Would I therefore be right in thinking that I have MND rather than the lyme disease.

many thanks

Roy.

Joanne60
30th November 2012, 15:30
Roy
Nothing is quite so simple where Lyme Disease is concerned.

Those of us with pets are venturing into areas that our pets go so if the pet comes in with ticks on then we are also at risk. Faith Smith did some interesting research recently using dogs as sentinels http://www.bristol.ac.uk/news/2012/8176.html

For 30 years I had removed ticks(incorrectly) from our dogs. I was only familiar with the fully engorged tick. However the smallest tick is the size of a poppy seed and the nymph is also very tiny - if either are attached on the back of us or in the hair line they are extremely difficult to see. They inject an anesthetic into the victim so we do not feel them biting and although there are suggestions for them to be attached over 24 hours before infection there are case studies of earlier rates of infection - Borrelia is found in tick saliva the first thing that is injected into us. Ticks do not make you itch nor does the rash, if you get one as not everyone does, most people worry about a secondary infection as a result of the mouth parts being left in and yes that is a concern but usually dealt with like any other wound - the real problem is if the Borrelia infection has been transmitted and is allowed to disseminate it can lead to many different symptoms MND being just one of the possible diagnosis.

I do not suggest that all MND is caused by Lyme Disease merely that there are some documented cases and so it needs to be excluded as a differential diagnosis by someone experienced with dealing with the disease and not just on negative blood tests because those tests have many problems.

Joanne

Joanne60
3rd August 2017, 08:50
Sorry but it is some time since I posted on this thread and just thought you may find this of interest.-

Dr. Al ****** Lyme Disease Intro
Differential Diagnosis of Lyme & Borreliosis

Published on Apr 19, 2017
This is the introduction to my 4 part series on Lyme Disease.

For more information contact me at lymediagnosis@gmail.com

The above was shared by a friend Dana Parish with the following information -'Iwas surprised and delighted to receive a call from retired Mayo Clinic rheumatologist, Dr. Alfred ******, last week. He wanted to tell me about his daughter-in-law, also named Dana, who was struck by ALS at age 43. He could not imagine this happening to this beautiful, healthy woman and started investigating.

Upon researching, he discovered links between Lyme and ALS and had her tested. WHAT DO YOU KNOW!!! She was POSITIVE! Remember, though, he had her tested at a proper lab, IGeneX, and NOT Quest or Lab Corp, which miss approx 50% of cases!

So, all the "best" doctors in the world sent her home to die with no hope and no proper investigation into the CAUSE of her ALS. Those of us in the Lyme community are well aware that the Mayo Clinic is the LAST place you want to go if you have Lyme.

Dr. ****** began treating her aggressively with IV antibiotics and they halted the progression of her illness. This does not happen with "real" ALS.

He began contacting his patients who he had previously diagnosed with Fibromyalgia, Rheumatoid arthritis, and other inflammatory "auto-immune" arthritis and diseases and urged them to get properly assessed for Lyme and other tick-borne diseases known to cause these symptoms, like Bartonella.

WHAT DO YOU KNOW!! Most of them had Lyme!!

I look forward to bringing you more from Dr. ****** soon. In the meantime, he is on a mission to educate doctors and patients about the ravages of this disease and his horror at the medical community's ignorance about it.


All Dr ******'s presentations are available on You Tube
https://www.youtube.com/channel/UCD19kTsVBMH-F0BfV3335Ow

Thank you Dr ****** for having an open mind, after a lifetime in Rheumatology you were still willing to learn and seek out answers, but more importantly thank you for speaking up and sharing your experiences.

Singer/songwriter Dana Parish was involved in the recent Fox5NY News
LYME & REASON which I posted about https://lookingatlyme.blogspot.co.uk/2016/07/fox-5-lyme-and-reason.html


Thrilled to share that FOX 5 / Fox5NY.com Lyme and Reason Special won the Emmy for Best Science/ Health program, as presented by Dr. Oz.

https://lookingatlyme.blogspot.co.uk/2017/05/als-or-motor-neuron-disease-caused-by.html

Ellie
3rd August 2017, 12:48
That is why doctors run so many blood tests: Lyme disease can be detected by a blood test.

ccinjersey
3rd August 2017, 16:56
True Lyme disease responds to antibiotics and mnd/als does not. Also true some blood tests results can be a false negative.

There are also plenty of Lyme doctors out there more then happy to take a person's money, and treat aggressively with antibiotics knowing full well the person does not have Lyme, but mnd. I personally witnessed two of these quacks first hand have no shame in stealing my dear friend's money.

There are wonderful, ethical doctors in the world, as there are the charlatans as well.

Just be careful, and aware.

CCxox

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