Diagnosed from ALS2Lyme!

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VerlorengezondheidM
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Diagnosed from ALS2Lyme!

Berichtdoor VerlorengezondheidM » Di 10 Nov 2015, 14:37

It is becoming more and more apparent that ALS (Amyotrophic Lateral Sclerosis) and many other neurological degenerative diseases are actually quite often misdiagnosed Lyme disease. There is no definitive test for ALS, diagnoses is based upon symptoms and by ruling out other treatable afflictions. There is no known cause or cure for ALS. so the question I and others often ponder is how can I be absolutely positive that I have ALS and not some other treatable illness?
I was diagnosed as having ALS by some of the top neurologists in Chicago. After culturing my blood for four weeks by a research lab in Michigan, the results were positive in finding Borrelia Burgdorferi, the bacteria responsible for LYME DISEASE !!! I am not the only one, I know of thirty seven (37) other PALS who also have tested positive for Lyme.


Bron: shoptown.com/Dean/ALS2Lyme, lees meer
Lyme Test Negative?
It Still May Be Lyme Disease!

Na 19 jaar onbehandeld rondlopen met een klinisch ziektebeeld: Chronische Lyme, Q-koorts, Bartonella, Babesia, Anaplasma, Chlamydia, Mycoplasma, Rickettsia, Yersinia, Coxsackie A16+ B, HHV-6.

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Roxy
Berichten: 4686
Lid geworden op: Wo 29 Okt 2014, 12:14

Re: Diagnosed from ALS2Lyme!

Berichtdoor Roxy » Di 10 Nov 2015, 15:23

Fox News 4 augustus 2013

Living with Lyme Disease

A man misdiagnosed with ALS, who has actually chronic Lyme Disease!
bron http://video.foxnews.com/v/258446644000 ... show-clips
~ I may not be there yet, but I'm closer than I was yesterday ~
~ The people who are meant to be in your life are the ones who know how to gently wait for you to heal ~
~ So encourage each other and build each other up - Positive connections ~

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VerlorengezondheidM
Berichten: 1965
Lid geworden op: Za 19 Sep 2015, 23:59
Locatie: Tilburg
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Re: Diagnosed from ALS2Lyme!

Berichtdoor VerlorengezondheidM » Wo 13 Jan 2016, 18:23

Man Diagnosed With ALS Dies of Lyme Disease (Part 1 of 2)


Bron: Huffingtonpost Lees meer

Zie ook de opvallende comments onderaan het artikel, in mijn optiek zeer lezenswaardig!
Lyme Test Negative?
It Still May Be Lyme Disease!

Na 19 jaar onbehandeld rondlopen met een klinisch ziektebeeld: Chronische Lyme, Q-koorts, Bartonella, Babesia, Anaplasma, Chlamydia, Mycoplasma, Rickettsia, Yersinia, Coxsackie A16+ B, HHV-6.

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VerlorengezondheidM
Berichten: 1965
Lid geworden op: Za 19 Sep 2015, 23:59
Locatie: Tilburg
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Re: Diagnosed from ALS2Lyme!

Berichtdoor VerlorengezondheidM » Di 19 Jan 2016, 12:52

Verband ALS-MS-Parkinson-Alzheimer en de ziekte van Lyme (uit de documentaire Under our skin)


Bron: Youtube: kijk en luister, short video
Lyme Test Negative?
It Still May Be Lyme Disease!

Na 19 jaar onbehandeld rondlopen met een klinisch ziektebeeld: Chronische Lyme, Q-koorts, Bartonella, Babesia, Anaplasma, Chlamydia, Mycoplasma, Rickettsia, Yersinia, Coxsackie A16+ B, HHV-6.

Sproetje
Berichten: 3136
Lid geworden op: Di 28 Okt 2014, 20:33

Re: Diagnosed from ALS2Lyme!

Berichtdoor Sproetje » Vr 22 Jan 2016, 19:53

Laatst gewijzigd door Sproetje op Vr 16 Dec 2016, 17:10, 1 keer totaal gewijzigd.

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VerlorengezondheidM
Berichten: 1965
Lid geworden op: Za 19 Sep 2015, 23:59
Locatie: Tilburg
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Re: Diagnosed from ALS2Lyme!

Berichtdoor VerlorengezondheidM » Wo 14 Dec 2016, 19:42

My Story
• Name: Daniel Larking
• Age: 41
• My address (postal and residential) is:
• You can contact me on:
(my mobile however I am unable to answer calls on my own due to
neurological impacts)
• I want my story to be very public
About my journey
• I acquired Lyme-like illness at: Melbourne VIC
• I have travelled extensively around the world.
• Type of Bite: Unknown – definitely have never been bitten by a tick or had any ring
marks
• I was sick for 2.5 years before I was diagnosed.
• I have positive blood tests from Deutsches Chroniker Labor in Germany (via
Seegarten Klinik in Switzerland)

• I tested positive for [list of diseases].
• I have seen 8-10 of doctors and medical practitioners in my journey.
• I have not been admitted to hospital for my illness however due to the neurological
symptoms have had a number of falls for which I have been to hospital for (broken
jaw etc).
• I was first diagnosed with Motor Neuron Disease (ALS) however due to my relentless
search to find an answer, finally got a Lyme Disease diagnosis. Due to this very late
diagnosis, it is clear it has caused some sort of Motor Neuron Disease as I have
severe neurological impacts. When I was first diagnosed with ALS, I consulted my
neurologist requesting a lyme disease test. She dismissed this saying Lyme disease
does not exist in Australia. She finally referred me to get a test however failed to
disclose my correct result saying it was negative. 3 years later, I requested these
results for my records and the Australian result were positive (currently seeking legal
advice for malpractice).
• Access to my superannuation and Total and Permanent Disability is a work in
progress.
My life
• Prior to my illness, my life was one of fitness and outdoor activities. I have travelled
extensively and was an avid mountain climber – have climbed mountains all over the
world including Matterhorn, Mont Blanc, Himalayan mountains, Kilimanjaro to name
a few. I was also an experiences skier and snowboarder, runner, mountain biker,
swimmer – I loved the outdoors and was very independent. I also always had a full
time job – working on many large financial institution projects across the world as a
programme manager.
• In December 2011, I noticed a twitch in my left bicep which wouldn’t stop. After
several months, I saw a doctor who referred me to a neurologist. Several tests later,
I was diagnosed with Motor Neuron Disease in September 2012. This was the most
devastating thing to hear – they told me I was going to die and at best had 3 – 5
years left. The most difficult part of this diagnosis was that it is by exclusion – there
is no positive test for MND/ALS. It’s all about disproving it is something else. I
immediately started investigating online what other medical reasons could be
causing my symptoms and saw several things which I had not been tested for. Two
of particular interest was Lyme Disease and heavy metal poisoning. On my next
consultation with the neurologist, I quizzed her on both of these and asked for tests.
For both, she said it was impossible to cause my symptoms and Lyme Disease in
particular, was not in Australia (even though I made her well aware of my extensive
travels). I insisted she refer me for a test (I went for a blood test immediately
afterwards). Several weeks later, I went to the Neurologist and she confirmed the
results were negative and proceeded to talk about ‘end of life’ preparations. By then,
I only had symptoms in my left arm and refused to believe what she was saying… I
never saw her again. Two months later I climbed a mountain in the Himalayas… and
three months after that, a mountain in Russia.
By July 2013, I knew my symptoms were progressing. Muscle atrophy in both my left
arm and hands and weakness. Twitching was slowly moving to my chest and right
arm. Around this time, I had been put into contact with a company based out of
Switzerland called Natural Biosciences. They had successfully treated a number of
MND patients by administrating stem cell therapy. The aim was to stop progression
of the disease using their methods and gradually rebuild the muscle that had lost. In
October 2013, my partner and I travelled to Switzerland for this. Up until January
2015, we had gone back at least half a dozen times for more stem cell therapy. The
doctors were not sure why their treatment was not being as effective as it has with
other patients. By this stage, I was in a wheelchair, not being able to walk without
assistance. Had lost ability to lift and use my arms and hands meaning I could not
feed myself or look after myself without full assistance. My speech had also been
impacted with increased slurring. I also stopped working in July 2014 because my
symptoms were so bad, it was a risk being at work, having fallen a few times and my
ability to work effectively was being affected (not being able to type, walk easily to
meetings etc).
Towards the end of 2014, my partner and I spent some time on the internet
searching again for any new developments. We kept coming up with Lyme Disease
and read many articles of Australia missing the Lyme disease diagnosis. When we

travelled to the clinic in Switzerland in January 2015, I asked to get tested for Lyme
disease. Ironically, a different department to the clinic treated Lyme disease and is
one of the few in Switzerland. 4 weeks after returning back to Australia, we received
an email confirming it was Lyme Disease – and that it was so ingrained in my muscles
that from their experience, I have had it for at least 10 years. They said that if I had
treatment for this earlier, I would not have the symptoms I have today. Both a
devastating thing to hear but the answer we were looking for. A few weeks later, I
travelled to Switzerland for 6 weeks intensive treatment. While there on my first
day, the Lyme specialist looked at my partner and said that we need to get her
tested – in every case they have, the partner also tests positive because it is
transmitted through sexual intercourse. Of course it would – it’s a bacteria. Yet no
one talks about this. She too tested positive and it is almost certain that I was the
one who passed it to her. While we were over there, Krystle also received
treatment.
My treatment included 10 hyperthermia sessions where my body up heated up to
over 41 degrees whilst being administered a number of antibiotics including
Doxycycline, Metronidazole and countless infusions of high dose vitamin C, alkaline
infusions to name a few. As Krystle’s readings were lower, she only had 8 sessions
and 4 weeks worth of antibiotics.
We came back to Australia and sought rehabilitation through hospital. The
swiss doctor said that once the bacteria was eliminated, the stem cell therapy would
kick in so I had to start intensive rehab as soon as possible. was a horrible
experience. I was promised 2 weeks intensive rehabilitation however they refused
to recognise the Lyme diagnosis – they repeatedly said they had to respect the
Australian diagnosis of MND. Their belief was for MND you had to conserve energy
(which is the complete opposite to what the medical professionals say in
Switzerland). I was left in tears many times while I was at the hospital because I
know what was needed yet I kept coming up against a brick wall. As the Australian
medical industry does not recognise that I may recover from this, I have had to
source professionals privately to help me with my rehabilitation at home. I
currently have Pilates 4 days a week and myotherapy once a week. Both trainers
have been amazing and truly believe that I will get through this – they push me hard
in my rehabilitation which is exactly what I need. I have noticed some slight
improvements with increased grip in my hands and have started to gain a little bit of
weight. I will continue with stem cell therapy for repair but my deterioration has
virtually stopped since receiving the Lyme disease treatment. The clinic in
Switzerland have started testing their ALS patients for Lyme disease (they are not a
diagnosing clinic and treat patients based on diagnosis elsewhere). However due to
Daniel’s findings, they are starting to see a strong correlation between ALS patients
and Lyme disease – what they are now saying is that it is one of the causes of
MND/ALS. It could be a precursor. However treatment may be the key to stop the
progression. When we last spoke to the clinic last, 3 out of 4 ALS patients tested
positive for Lyme disease.
Altogether, my partner and I have spent over $300,000 of our own life savings for
treatment and private rehabilitation. We have never received any help from anyone
and are trying very hard to do this all on our own. We know that we could never get
the support we needed through the Australian medical industry – all we would get is
support to help me die… access to a nursing home or palliative care. I will prove
them wrong.
I had originally sought legal advice for the incorrect negative result for Lyme disease
back in early 2013 (via my Australian neurologist). The legal firm had requested I
get all copies of my medical records. I started this process in October 2015 and the
Lyme result was the most difficult for them to track down. I then received a copy in
the mail from the neurologists receptionist and to my horror, it said the result was
positive. The result was initialled by the neurologist… i.e. she had seen it, yet she
told me it was negative. This has now changed the focus for my legal team.
This disease has destroyed my life – going from someone so fit, healthy, loving life to
being completely incapacitated and needing full support. The emotional torment is
devastating and something you can never imagine. Being trapped in a body that
cannot move like it used to and being completely aware is impossible to come to
terms with. This is devastating for my partner and also our families. You could
never comprehend what this is like. I am very bitter towards the Australian medical
industry, its lack of recognition of this disease, support for me and my family, its
failure to be world leading as it claims to be for so many things and am completely
ashamed of our medical industry.


Bron: https://www.google.nl/url?sa=t&source=w ... SMyLquBazQ
Laatst gewijzigd door VerlorengezondheidM op Wo 14 Dec 2016, 20:04, 2 keer totaal gewijzigd.
Lyme Test Negative?
It Still May Be Lyme Disease!

Na 19 jaar onbehandeld rondlopen met een klinisch ziektebeeld: Chronische Lyme, Q-koorts, Bartonella, Babesia, Anaplasma, Chlamydia, Mycoplasma, Rickettsia, Yersinia, Coxsackie A16+ B, HHV-6.

Eus
Berichten: 992
Lid geworden op: Di 28 Okt 2014, 23:27

Re: Diagnosed from ALS2Lyme!

Berichtdoor Eus » Wo 14 Dec 2016, 19:58

No association between Borrelia burgdorferi antibodies and amyotrophic lateral sclerosis in a case–control study
Authors
A. E. Visser,
F. M. Verduyn Lunel,
J. H. Veldink,
L. H. van den Berg
First published: 7 November 2016Full publication history
DOI: 10.1111/ene.13197View/save citation
Cited by: 0 articlesCitation tools
Article has an altmetric score of 1
Funding Information
Abstract

Background and purpose

Previous studies, mostly case reports and uncontrolled studies, provide a low level of evidence for the hypothesized link between Lyme disease and amyotrophic lateral sclerosis (ALS). In order to make evidence-based recommendations regarding testing for Borrelia burgdorferi antibodies in the diagnostic work-up for ALS, the objective of this study was to explore the evidence for an association between these antibodies and ALS in a case–control design including age-, gender- and residency-matched controls.
Methods

A total of 491 patients with ALS were matched to 982 controls. IgG titers against B. burgdorferi were determined by an enzyme-linked immunosorbent assay and, in the case of positivity or borderline results, a western blot was performed. Conditional logistic regression and Fisher's exact tests were used to compare the antibody titers or positivity between patients and controls.
Results

No difference in seroprevalence of Borrelia was found between patients (4.1%) and controls (5.9%). Clinical characteristics and survival were similar between seropositive and seronegative patients. Moreover, patients with a spinal onset were not more frequently seropositive compared with patients with a bulbar onset (P = 0.47), and neither were patients with a short diagnostic delay of <6 months compared with controls (P = 0.69). None of the 20 patients with a diagnostic delay of <3 months tested positive for IgM antibodies, suggestive of a recent infection.
Conclusion

This large case–control study provides evidence for a lack of association between B. burgdorferi antibodies and ALS, and therefore does not support the inclusion of routine testing for these antibodies in the diagnostic work-up in patients with classical ALS.


Bron; http://onlinelibrary.wiley.com/doi/10.1 ... 7/abstract

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VerlorengezondheidM
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Lid geworden op: Za 19 Sep 2015, 23:59
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Re: Diagnosed from ALS2Lyme!

Berichtdoor VerlorengezondheidM » Do 15 Dec 2016, 14:51

Methods

A total of 491 patients with ALS were matched to 982 controls. IgG titers against B. burgdorferi were determined by an enzyme-linked immunosorbent assay and, in the case of positivity or borderline results, a western blot was performed. Conditional logistic regression and Fisher's exact tests were used to compare the antibody titers or positivity between patients and controls.


Mijn Western Blot is ook negatief, toch hebben de gerespecteerde artsen, dokter S. en Dokter v.M. onafhankelijk van elkaar beide de diagnose Lyme en co's gesteld bij mij.

Maar misschien ben ik een uitzondering dat zou natuurlijk ook kunnen.
Lyme Test Negative?
It Still May Be Lyme Disease!

Na 19 jaar onbehandeld rondlopen met een klinisch ziektebeeld: Chronische Lyme, Q-koorts, Bartonella, Babesia, Anaplasma, Chlamydia, Mycoplasma, Rickettsia, Yersinia, Coxsackie A16+ B, HHV-6.

Eus
Berichten: 992
Lid geworden op: Di 28 Okt 2014, 23:27

Re: Diagnosed from ALS2Lyme!

Berichtdoor Eus » Do 15 Dec 2016, 18:18

Mijn Western Blot is ook negatief, toch hebben de gerespecteerde artsen, dokter S. en Dokter v.M. onafhankelijk van elkaar beide de diagnose Lyme en co's gesteld bij mij.

Maar misschien ben ik een uitzondering dat zou natuurlijk ook kunnen.


Ik denk niet dat je een uitzondering bent. Het RIVM stelt niet voor niets; http://www.rivm.nl/Documenten_en_public ... gnose_Lyme

Maar wat ik wel heel opvallend vind, is dat er tussen de groep ALS-patiënten en de controlegroep ook geen groot verschil in positieve testen gevonden werd.
Results: No difference in seroprevalence of Borrelia was found between patients (4.1%) and controls (5.9%). Clinical characteristics and survival were similar between seropositive and seronegative patients. Moreover, patients with a spinal onset were not more frequently seropositive compared with patients with a bulbar onset (P = 0.47), and neither were patients with a short diagnostic delay of <6 months compared with controls (P = 0.69). None of the 20 patients with a diagnostic delay of <3 months tested positive for IgM antibodies, suggestive of a recent infection. Conclusion: This large case–control study provides evidence for a lack of association between B. burgdorferi antibodies and ALS, and therefore does not support the inclusion of routine testing for these antibodies in the diagnostic work-up in patients with classical ALS.


Nog twee quote uit het gepubliceerde artikel;

Previous studies, mostly case reports and uncontrolled studies, provide a low level of evidence for the hypothesized link between Lyme disease and amyotrophic lateral sclerosis (ALS). In order to make evidence-based recommendations regarding testing for Borrelia burgdorferi antibodies in the diagnostic work-up for ALS, the objective of this study was to explore the evidence for an association between these antibodies and ALS in a case–control design including age-, gender- and residency-matched controls. ........
........Looking more closely at the medical records of the 20 seropositive (IgG western blot) patients, they showed typical ALS characteristics with deterioration over time and no symptoms or signs suggestive of Lyme disease. Discussion In this case–control study we did not find the seroprevalence of Borrelia IgG antibodies to differ between patients with ALS and healthy controls. In fact, the prevalence rate of 4.1% in patients with ALS is similar to the seroprevalence in the normal population of The Netherlands [15]

Sproetje
Berichten: 3136
Lid geworden op: Di 28 Okt 2014, 20:33

Re: Diagnosed from ALS2Lyme!

Berichtdoor Sproetje » Do 15 Dec 2016, 19:43

Eus schreef:Maar wat ik wel heel opvallend vind, is dat er tussen de groep ALS-patiënten en de controlegroep ook geen groot verschil in positieve testen gevonden werd.


Ja, viel mij ook al op.

Het onderzoek dat je aanhaalt zegt ook dit:

.......
In order to make evidence-based recommendations regarding testing for Borrelia burgdorferi antibodies in the diagnostic work-up for ALS, the objective of this study was to explore the evidence for an association between these antibodies and ALS in a case–control design including age-, gender- and residency-matched controls.
......


Maar om dan naar aanleiding van dit Nederlandse onderzoek meteen dan maar iedere ALS patient vooral niet op lyme (en co) te laten testen zou ik niet zo ethisch vinden.

Er is n.l. nog een onderzoek, maar dan niet uit Nederland het is al wat ouder en kleiner van opzet, dat zegt iets anders:

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


Terug naar “Algemeen Lyme-borreliose”



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