i would never have seen if if tutu didn't bring it to my attention. sometimes there is just too much info here for my brain
its a 169 pg bk...i started reading at 9 and couldnt stop. im in shock. i need to get back on treatment.
they are saying all als is lyme...and most will get better with abx if given correctly. but there is a level where it is too late and the herx can kill you.
the one thing that is confusing me now -in case any als/lyme experts come along is:
they do say that other things could cause als too...and they mention free radical damage...but so far (i have 30 pages to go) there has been no specific mention of supplements. they say "supplements" but dont say what or how much.
i have perlmutters books and a site that gives supp protocols...and they do seem to take the edge off sx but when i cant walk the supps dont make it so i can...but they do help with cramping and pain
so-im not exactly sure what i will do but would like to talk to others going thru this. now i understand why i didnt feel welcome at some als sites i visited...does anyone know of a good one for those with both lyme and als?
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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lpkayak
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well...i finished the book. wow. so many people i have followed and respected re: lyme for the past 25 years were in there.
more scientists than docs. i felt like i was at a homecoming party...visions of past conferences just flew thru my brain...
altho "the bull without ba--s" was taken down a notch or two.
if you have als sx it is really important to read or to have someone you trust read it for you and help you think it thru.
i would like to know what dr. K thinks of it.
also if scott has read it. i'll check that later.
and PW and ES and so many others. i want to hear what they think.
i have no communication with dr K tho.
over the years there was such a long space when no new info came out. this is new. the research goes back aways but it has just been consolidated into a book last month.
i now believe the low dose doxy i took this last year-ordered by my non-LL eye doc is the cause of my going downhill the last 6 months to where i am more unable to walk than any other time in my 29 year battle.
my "new" illness or progression from Bb, babs, bart and erlichia feels a lot like what happened to me after taking lipitor(statin) for 6 months. that also made me unable to walk-but 12 hrs after i stopped it i could walk.
and there was no mention of statins in this work...but again...i hope someone looks into it.
i hope i have gotten this info soon enough. i think i have-my swallowing and breathing are not severely compromised altho they are beginning to have problems.
and they plan to write similar books on ms and alzheimers -they say there is a lot of science to show both are caused by Bb
on a personal note: i understand so much better why my children who are scientists tend to dismiss the whole lyme thing...they are smart. they learn what they are taught. they trust their teachers. this is a problem.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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MichaelTampa
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I saw an earlier version of this and thought it was fairly well done. It does look like there is more in it now.
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posted
Why would doxy cause a decline with ALS? I am just curious because my symptoms are ALS/MS like and when I started doxy a couple months ago, everything got much worse - heavy chest, trouble swallowing, weak arms and legs.
So confused - thought it was a herx. What is the best antibiotic then for ALS/MS Lyme? I have not been diagnosed with ALS or MS, but my symptoms are weak arms, severe pain in spine, weak legs (never could not walk on my own), balance problems, severe head pain, neck stiffness, cognitive problems...the list goes on.
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lpkayak
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my words-what i remember from the text...and i am foggy:
low dose doxy (100mg a day) is enough to stir up the ketes and kill a few or make a few sick but make they want to get out of that environment. so they move to other tissues and go thru neurons to do it and therefore hurt the neurons...
their answer is to alway give flagyl (or tini i think) with doxy cux those drugs destroy the ketes tail so they cant swim away and destroy the neurons
i need to take a break -been reading for hours-but if you cant find that part i will post page number later-few hours
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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lpkayak
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jwall-on p. 140 -the last sentence talks about using flagyl(metrocon...) with abx
it says doxy at top of page...
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droid1226
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posted
There's always been a link between the two. There was even a study done on 150 ALS patients by some Dr. Barr and not one tested negative for lyme.
The clearest example of the lyme/als connection in this pdf is the Italian soccer players, and just soccer players in general. 7 x's the rate of ALS.
Dr. K also has recognized this. I think there's plenty of ways to kill neurons and destroy the CNS. Infection is just one of them.
There's people on this board who have displayed all the telltale signs of ALS and have reversed some symptoms with hardcore IV abx (me included).
Also, you can't tell many patients who have been diagnosed with any of the acronym diseases (ALS,MS,RSD,Parkinsons, etc...) that they may have lyme.
People cling to their diagnosis like their religion.
What if spirochetes such as borrelia etc. and it's co-infections are a secondary infection to ALS, Autism, Alheimer's, Parkinson's, etc and that Prions are a more important infection to tackle!!!
I had Alzheimer's/MS/Parkinson's like symptoms but symptoms are greatly reduced and don't always need to be as vigilant now that I focused on prions.
But when treating for prions, there will always be increased symptoms when treating. And will always need to be on a maintenance dose otherwise the prions score will go right back up again.
Please read the pdf's in this link http://alzheimers-prions.com/ to see how Alzheimer's and Parkinson's is related to prions. ALS as well as autism and many other conditions may be related to prions as well and only time will tell how much.
I have no difficulty with the concept of prion disorders. I think of prion disorders as protein cancers.
Prions are proteins which are normally present in the body and perform essential functions. However, if they come into contact with a particular toxin or heavy metal or another twisted prion (rotten apple effect), then they too twist and distort.
When they twist in such a way that they cannot be broken down by the body enzyme systems, they cause problems because the body cannot break them down so it dumps them.
Pathologically this is known as amyloid. This results in deposition of these indigestible proteins and this can be anywhere in the body.
What creates prions?
Just as cancers have triggers and causes, we now recognise some of the triggers for prion disorders. The best documented are heavy metals, pesticides and natural toxins , but there may well be others. For example:
�Parkinson�s disease is associated with manganese toxicity and organophosphate pesticides.
�Motor neurone disease is also associated with manganese poisoning and cycad (a natural toxin from beans).
�Alzheimer�s disease has been linked to aluminium toxicity (as, for example, in dialysis dementia) and also mercury toxicity. The mercury may be coming from dental amalgam fillings. Both mercury and aluminium either have been or continue to be used in vaccination � it may be that annual flu vaccinations increase the load of heavy metals year on year. Recent studies show they may be partly responsible for our current epidemic of Alzheimer�s disease."
Does Lou Gehrig�s Disease fit the profile for a prion? Yes. In the case of Lou Gehrig�s disease the prion standard applies.
A prion invades neurons, changing the normal protein structure to an abnormal protein structure � then the immune system destroys the neuron with the abnormal protein.In the case of Lou Gehrig�s Disease, it is the motor control neurons that come under attack.
Those neurons become infected with an abnormal protein and the immune system destroys them. Leaving its victims helpless"
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lpkayak
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droid re this: Also, you can't tell many patients who have been diagnosed with any of the acronym diseases (ALS,MS,RSD,Parkinsons, etc...) that they may have lyme.
i know...in the book he says something like...wouldnt you want to try abx if you had a terminal disease? what could you lose?
but i know...many are brought up to do as the doc says and they do
live and let live...i have so many inmy family and it is hard to see but i have learned to let it go...
and jdp-i agree with you. i havent studied emf stuff to know about prions but i have a trifield meter and bought my house based on what it says and have most areas in the house safe an i spend smaller amt of time in the hot spots
and i also feel prasites are involved...it is all mixed together i think
for me...i have been deteriorating and not getting answers from docs except maybe back surgery or maybe als and die...so for me this news is hopeful.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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"High concentrations of a protein called TDP-43 was found in the brains and spinal cords of people who suffered from amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease, and frontotemporal dementia (FTD).
Scientists have long suspected a link between ALS and FTD because sufferers of one disease often develop symptoms of the other. The new finding explains the overlap by showing the two diseases share the same root cause.
The new study found that whether a person develops ALS or FTD depends on whether TDP-43 accumulates [image] in spinal cord or brain neurons, respectively."
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quote:Originally posted by lpkayak: i havent studied emf stuff to know about prions but i have a trifield meter and bought my house based on what it says and have most areas in the house safe an i spend smaller amt of time in the hot spots
and i also feel prasites are involved...it is all mixed together i think[/QB]
A Graham Stetzer meter I believe is also "very" important in my opinion and in my experience. It detects the dirty electricity in each outlet. I got mine for $25 on ebay used.
Regarding prions, one doesn't need to use an EMS machine or Rife machine to treat for prions. Certain combinations of herbs have shown to reduce prions but progress is very slow as in many months.
Nano TCM is used by Dr. L for prions which is also a remedy for staph and also other bacteria, fungi, candida, viruses, nanobacteria, mycoplasma, biofilm, lyme disease and co-infections and prions (with prions progress is slow).
Red Balm or Red Balm NA for those who don�t tolerate aloe vera is used by Dr. L for parasites as well as heal radiation damage, chemicals and both can be bought from here. http://www.royalrife.com/order.html
You have to join Health Balances to order the products. Dr. L is in Washington. Same state as Dr. K.
hope this helps
Blessings.
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lpkayak
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jwall-i found the explanation about doxy online where i could copy it
it is from sarah and john vaughter's site-they are medical journalists with science background-but are not docs. als-cure.com
Atkinson-Barr says that without an imidazole added to the antibiotic, treatment failure or even exacerbated symptoms are to be expected. Imidazoles such as Fasigyn (Tinidazole) paralyze bacterial flagellae (rotating hairs they use for propulsion and tissue/cell penetration) and without it, the spirochetes will attempt to move to tissue areas with a lower antibiotic concentration, causing a lot of extra damage as a result when they "drill" through neurons and Myelin. Imidazoles, when combined with antibiotics, greatly increase the likelihood for opportunistic fungal infection of the mucous membranes, so care should be taken to ensure meticulous oral hygiene and it is greatly recommended to add an antifungal medicine, as ALS patients have lowered defenses against such infections
Since April 1999, 150 ALS patients have been tested for Lyme disease with a panoply of tests � incl Western Blot, LUAT, PCR. Not one patient has been found to be negative across all tests. Many have been shown to be PCR positive. The prognosis and disease development of these patients is entirely consistent with ALS. Treatment with oral antibiotic therapy has shown mixed results. In particular the use of conventional antibiotics (esp. doxycycline) has been associated with deterioration of ALS patients. In one case the patient rapidly succumbed. In earlier stage ALS patients there is some evidence for improvement, with restoration of speech in two patients and some reported easier swallowing, when treated with oral metronidazole or tinidazole. The reactivity of ALS patients to Lyme tests has been previously reported. In the course of the past 9 weeks a patient (body weight 125lbs, 66 years of age) with advanced ALS symptoms has been treated aggressively with IV metronidazole + conventional antibiotics (Biaxin initially) at doses of 500mg tid metronidazole IV and 500mg Biaxin bid orally. The diagnosis of ALS was made at the Mayo clinic. The patient was admitted in respiratory failure with tongue fasciculations, weakness in the right arm. The immediate prognosis was poor and the attending physician expected the patient to expire within 24 hours. The patient was ventilated. In the course of 7 weeks of the above therapy the patient has improved and is now ambulatory and off of ventilation using only occasional nasal oxygen. On the IV therapy the tongue fasciculations disappeared. After 7 weeks the patient was taken off of the IV meds and treated with only oral tetracycline (500mg qid). On this treatment the tongue fasciculations returned. The IV therapy was reinstated with IV Rocephin replacing the oral Biaxin and the tongue fasciculations ceased. The patient continues to improve on a daily basis. Tentative conclusions: The etiologic agent of ALS is Borrelia burgdorferi. Effective treatment of late stage ALS is possible with aggressive antibiotic therapy that must include metronidazole. Other researchers have recently reported success in treating early stage ALS with antibiotic therapy. ALS patients should not be treated with simple �textbook� antibiotic therapy which does not include a nitroimidazole. This therapy should be considered experimental at this stage.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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lpkayak
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droid and jp-i was really tired when i read your reply b4. so you are saying-you do agree that doxy without flagyl could destroy neurons
but
you think there are many ways to destroy neurons including dirty electricity and prions?
does that include emfs...?
any other ways?
i know i do feel different with too much exposure to emfs...and i feel better with less...but it hasnt affected my ability to walk. mu lower legs and ability to walk is why i am looking for an answer...
another thing in the mix for me is i was recently given a steroid thru the skin...and i know now the neg affects of steroids on people with lyme can last for 6 months
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droid1226
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Kayak, Yes. Late stage ALS patients who took doxy only deteriorated faster. This is after the diaphragm started to weaken. However patients who took Flagyl improved.
Not only according to this study but there's a thread on the California lyme forums about this. Doxy only made people with ALS and lyme "go" faster.
posted
jdp.. That info on TENS is worrying! I will add this info to a thread on TENS.
Thanks!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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lpkayak
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droid-are you clear that taking doxy WITH flagyl works. but just doxy makes it worse. i dont think they looked at just flagyl.
did you read enough to see that doxy hurts the ketes but flagyl makes it impossible for them to run(swim) away...and the swimming away is what damages neurons...and then it looks like als
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droid1226
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Kayak, I'm not reading it from the study. There's a thread on this exact topic on the Yahoo California Lyme Forums.
Doxy worsened the condition of the ALS patients significantly. Whether it was a herx or not I don't know. But it's consistent with what you posted.
posted
My dad died of ALS, my aunt (his sister) also had ALS.
I go to Dr. F. He has grants for two major studies on ALS / protozoan.
I never had thought I had a 'true' lyme .... but knowing about his protozoan and how he's linking it to ALS and MS, I will be following him close for the rest of my life.
My family must have DNA that can't fight these protozoans and left untreated, Dr. F is finding that they can trigger the autoimmune ALS or MS, Parkinsons.
You will not find any info on his grant studies yet. But they are about finished, so soon maybe something will be published.
-------------------- Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again! Posts: 941 | From AZ-MT | Registered: Oct 2004
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you think there are many ways to destroy neurons including dirty electricity and prions?
does that include emfs...?
any other ways?
i know i do feel different with too much exposure to emfs...and i feel better with less...but it hasnt affected my ability to walk. mu lower legs and ability to walk is why i am looking for an answer...
[/QB]
Dr. K from Washington talks about the extreme importance for those with ALS to reduce EMF exposure... which includes dirty electricity.
As mentioned from hadlyme, Dr. F has found FL1953 - Protomyxzoa Rheumatica being implicated in ALS. That a low fat diet and such are needed to address FL1953 - Protomyxzoa Rheumatica.
But regarding Prions, I personally very much believe that prions are implicated or implicated in a percetange for those with ALS as well as Alzheimer's, Parkinson's, Autism, Lyme and already shown in a study those with the very worst chronic fatigue have a prion issue.
Dr. L tests and finds them all the time.
In a prior link I posted, it mentioned how Dr. L has mentioned he finds out of the people he tests, 10% test as high for prions and 50% of the people he tests as having prions.
From this, if Dr. L is correct, prions are not so rare as believed. That it's not just connected to mad cow disease only.
In allopathic medicine/western medicine, there is basically nothing that addresses prions. I know Michael J Fox's foundation has mentioned they are looking into prions as being connected with Parkinson's.
Here is one quote within that PDF. hope this helps
"ALZHEIMER'S, PARKINSON'S, ALS, HUNTINGTON'S, etc. ALL THE SAME PROTEIN MISFOLDING/PRION DISEASE AS KURU, BSE, CJD (Creutzfeldt Jakob)
Alzheimer�s, Huntington�s, and Parkinson�s are some of the most common brain diseases� each causing a unique form of progressive brain cell death. However, they may not be so different after all. New research suggests these and many other neurological diseases may be versions of the same basic disorder:
a breakdown in the body�s ability to fold proteins into their correct shapes. Based on these findings, brain researchers are hoping for a common treatment for these conditions, using new kinds of drugs that prevent misfolding or minimize harm done to the cell.
What if many of the most common brain disorders were all different versions of the same basic disease? At first glance, this seems ridiculous.
Huntington�s disease, Alzheimer�s disease, Parkinson�s disease, and amyotrophic lateral sclerosis (ALS) have widely varying symptoms, affect different parts of the brain, and respond to different treatments. 17
However, a look under the microscope tells a different story. In each of these disorders, brain cells accumulate clusters of misfolded proteins � perhaps the best known are the Lewy bodies found in people with Parkinson�s, the plaques of a protein called amyloid-beta seen in Alzheimer�s patients, or the armies of misfolded proteins called prions in �mad cow� disease.
Neuroscientists are finding increasing evidence that these clumps, rather than being a result of disease, may be a root cause.
Research also suggests these clumps develop from the same essential source� a breakdown in the body�s system for ensuring proteins fold into their correct shapes. This theory of �protein misfolding diseases� is leading to:
Better explanations for how many brain diseases begin, spread, and worsen. Potential new, universal methods of treating many disorders by reducing the amount of protein misfolding or by breaking up misfolded proteins.
"However, this system sometimes becomes overwhelmed. In the early 1980s, researchers identified misfolded proteins called prions that cause a number of rare brain disorders, such as kuru, bovine spongiform encephalopathy (�mad cow� disease), and Creutzfeldt-Jakob disease.
This unprecedented finding led many to wonder, could misshapen proteins be the root cause of other brain diseases?
Brain researchers have now discovered that many brain diseases feature protein folding problems. In Parkinson�s patients, alpha-synuclein forms clumps known as Lewy bodies.
Alzheimer�s sees tau tangles form inside brain cells and amyloid plaques accumulate near them. In Huntington�s, the nucleus becomes gummed up with clusters formed by an abnormal version of the huntingtin protein, and in ALS, the proteins superoxide dismutase and TD-43 accumulate in the body and projections of nerve cells. "
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lpkayak
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droid and jd-thank you for info
jd-i printed that out-cant read on the screen...surprised to see huntingtons in there. that was in my family...but married in...i thought it had to be gene from father...
but thank you.
droid if you want to read the whole book that includes ref to studies it is here: www.als-cure.com
they did mention they were involved with CA lyme
i am hopeful this new info will move us forward toward a cure
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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poppy
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posted
Just to throw a spanner in the works, there is evidence that the prions are a byproduct of a stealth infection, one that has no cell wall.
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posted
Hello droid, Do you have a reference to the Barr study and do you know what type of testing was used? The following info refers to Dr Alan Macdonald's work on ALS which was suppressed:
"Alan was the first to organize a free New York State wide MDA clinic serostudy of patients with Lou Gehrig�s disease, in 1987. This study yielded evidence with IFA testing that about 25% of ALS patients. Those with positive antibody titers greatly exceeded the negative controls. Alan�s serology for ALS was replicated in independent testing at the Rocky Mountain Laboratory. The political environment again came into the mix. Alan�s ALS serostudy was never accepted for publication. Two years later Dr, John Halperin and colleagues at Stony Brook performed a much smaller ALS serostudy for Borrelia antibodies. Halperin detected Bb antibodies from 9 ALS patients; 3 of 9 patients showed improvement in their disease after antibiotic treatment. Prompt publication of the Stony Brook study appeared in the Archives of Neurology (1990)."
quote:Originally posted by droid1226: There's always been a link between the two. There was even a study done on 150 ALS patients by some Dr. Barr and not one tested negative for lyme.
The clearest example of the lyme/als connection in this pdf is the Italian soccer players, and just soccer players in general. 7 x's the rate of ALS.
Dr. K also has recognized this. I think there's plenty of ways to kill neurons and destroy the CNS. Infection is just one of them.
There's people on this board who have displayed all the telltale signs of ALS and have reversed some symptoms with hardcore IV abx (me included).
Also, you can't tell many patients who have been diagnosed with any of the acronym diseases (ALS,MS,RSD,Parkinsons, etc...) that they may have lyme.
People cling to their diagnosis like their religion.
All you can do is treat what you know you have.
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Catgirl
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