-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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poppy
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posted
I think some MS is lyme, but not all. Same with the other diseases that are mimicked by lyme. If you think about the limited number of ways the body can respond to various "insults," then it becomes more understandable that several paths might lead to the same group of symptoms that are given a disease name.
The problem with making blanket statements about this situation is that if some MS is not caused by lyme, then treatment for lyme won't help, and then the baby is thrown out with the bathwater. Then it is denied that any MS could be lyme.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
Read the info above. Dr McDonald found Lyme spirochetes in all MS patients' brains.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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randibear
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posted
ditto....now if some of them will listen...
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Keebler
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posted
- When Bb spirochetes are seen in the brains of all test samples, though, that is eye-opening.
I have no doubt that other stealth infections can do major damage and that the medical college "experts" would rather say they see space aliens than give any infection credit for damage or - gasp - actually treat any stealth infection as aggressively as required for as long as necessary.
It could be, for instance, that while Cpn is also connected to MS, it might travel with lyme. As the Cpn protocol is very similar that that for chronic neuroborreliosis, lyme could go undetected.
For some who could not get proper lyme diagnostics or find a LLMD/LLND to address lyme and other tick-borne infections, if they can find a Cpn doctor and follow the Wheldon/Stratton protocol, they may be treated not just Cpn but also lyme.
poppy
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posted
The word "all" gives me problems.
Haven't read the whole thing yet, but one thing that jumped out at me was the idea that spirochetes = lyme. There are other spirochetes, including dental ones.
Posts: 2888 | From USA | Registered: Mar 2004
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Keebler
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posted
- He does specify: Borrelia burdorferi.
See Figure 1: various stages / forms of Borrelia burdorferi
Excerpts:
. . . "Borrelia infection is therefore a unifying concept to explain diverse neurodegenerative diseases, based not entirely on a corkscrew shaped profile in diseased tissue, but based on small, medium and large caliber rounded cystic profiles derived from pathogenic spirochetes which are hiding in plain sight.� . . .
. . .
. . . [In addition to MacDonald's work] . . . read the fascinating and terrible personal story and Lyme - vs - MS lecture by microbiologist and Borrelia expert Tom Grier. . . .
(audio link) -
[ 02-12-2013, 04:45 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
I believe he said the same thing about Alzeimer's too.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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Keebler
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posted
- Indeed. His findings are exceptional and relevant to so many neurolgical diagnoses. And he is not the only researcher investigating these connections.
Alzheimer's disease - a neurospirochetosis. Analysis of the evidence following Koch's and Hill's criteria.
Miklossy J.
International Alzheimer Research Center, Prevention Alzheimer Foundation, Martigny-Combe, Switzerland -
Posts: 48021 | From Tree House | Registered: Jul 2007
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linky123
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posted
I think in UOS, Dr McDonald found Bb spirochetes in 8 out of 10 brains of patients with Alzheimer's.
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
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Dekrator48
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posted
Thanks for sharing!!
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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lpkayak
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posted
when macdonald and grier say it is so...it probably is. the author published findings on als last month and plans to write on ms and alz next.
they are saying they have found Bb in many patients who dies of the 3 conditions.
the reason the authors say als is end stage Bb is this:
"We think that the reason for the rapid deterioration in ALS patients with significant lower motor neuron damage when treated with conventional antibiotic treatment (without the use of an imidazole such as Flagyl) is very likely not a Jarish-Herxheimer reaction or the result of increased local inflammation due to increased antibody production. Because Metronidazole impairs the bacterial flagellum (its brand name is "Flagyl" for that reason), preventing them from moving. This strongly suggests that the physical movement of the spirochetes is responsible for the deterioration, as the extra damage sustained to the remaining lower motor neurons proves fatal. Spirochetes are known to migrate or encyst themselves into protein envelopes when they sense cell wall damage to themselves. Both involves movements. Since Borrelia spirochetes are relatively large Since Borrelia spirochetes are relatively large bacteria, a great deal of damage to neuronal tissue is the inevitable result."
im not sure if they will say the same reason for ms...but they are saying the wrong kind of abx will damage more neurons faster...but if you use flagyl they are not damaged and the Bb is in fact killed and the patient cured.
i dont know if "lower motor neuron damage" would refer to both ms and alzheimers as well as als
every once in awhile tom comes on here...wouldnt it be great if he chimed in
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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lax mom
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posted
My mother in law has MS. Her husband is an MD. He finally made the connection between MS and Lyme and took her to Dr H in NY.
I was so excited. However, her Lyme test was negative...as expected...but they took the result as gospel and went back to the MS diagnosis and treatment.
droid1226
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posted
This Vaughter woman is going to lose a lot of people with her claims. I don't doubt that most MS is infection/viral based. But you can't say ALL, without question.
She also claims that 9/10 ALS is lyme yet there's clear evidence of the connection between CTE and ALS. Severe, repeated head trauma causes ALS also. Unless that's the 1 out of 10 she's talking about.
I certainly believe that most of what she's saying is true. I just wish she had some credentials, was a dr(or PHD), or wasn't afflicted and could be objective.
We'll never know how right she is because until they test accurately (or at all) for lyme and co's...no one's gonna put 2 and 2 together.
posted
Not ALL MS or ALS is lyme...my aunt died of ALS and did not have lyme or any tick borne illness.
Whenever anyone speaks in absolutes, they lose me. Jess.
Posts: 870 | From ct | Registered: Nov 2012
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Keebler
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posted
- Still, the absolute is that, absolutely, lyme should be considered in all neurological cases.
A good LLMD will also consider other tick-borne and other chronic stealth infections such as Cpn which can also be a the cause "MS".
Many of these will not be considered by most doctors, even neurologists.
I also think porphyria should be considered with all neurological cases, too. Testing for that condition of the liver & nervous system (not an infection) is also not conclusive, though, and can miss cases.
Years after the deaths of various family members, much of what I recall now makes more sense. I suspect that at least 2, maybe 3 had undiagnosed lyme. I'm sure one also had porphyria.
It's always sad to know that we've lost family members who had complex illnesses about which there were / are still so many questions.
While there can be various factors and causes to just about anyone's condition, it seems, there is no good way to really ever know that lyme is not connected. After the fact evidence in the studies above is eye opening and I hope the research continues to shine more light.
We also are learning that lyme is never "just" lyme.
We need better tests and more lyme literate doctors who understand as much as possible about lyme "complex" and will keep learning.
As it has been and is today, far too many with all kinds of neurological diseases do not have LL doctors who can do a proper assessment.
The patients are stuck with faulty testing methods that most doctors (even specialists) don't even know about, such as:
quote:Originally posted by lax mom: My mother in law has MS. Her husband is an MD. He finally made the connection between MS and Lyme and took her to Dr H in NY.
I was so excited. However, her Lyme test was negative...as expected...but they took the result as gospel and went back to the MS diagnosis and treatment.
- They didn't listen to how the test is interpreted?? I'm sure Dr H explained it all to them.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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lpkayak
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posted
lax mom-i have always liked the way tom grier explains the testing problems-i bet you can find his paper if you google tom grier on lyme test or something like that
porphyria-i have not learned about this-i guess cuz i have been sick and foggy and new stuff is hard...i will try to read on it so i understand
droid-sarah and john vaughter both wrote the artical and both are medical journalists. they both say the have strong scienc backgrounds. i'd like to see their credentials too..but pam weintraub was a medical journalist and had a lot of science background. and she wrote more scientifically correct about lyme than studies the idsa had published.
i think in many cases-info from a medical journalist is better than from and md.
also their info was based on griers and macdonalds work-and they have earned my respect.
so it is easy for me to accept the vaughters info.
droid-also-i have 2 closed tbi and have always thought the trauma to my brain made it easier for the Bb to attack me...otheres say Bb goes where the weakness is...but if you have specific info about head injury and Bb, ms, als etc...i woulod really like to see it.
having lyme and brain injury really makes dx and tx hard because of the way they overlap-and im always trying to figure this stuff out.
i listened to 2 of the radio interviews with grier...im not sure when they were done...but everytime i hear or read him it is so easy to understand and validating. i felt that way reading cure unknown by pam too. to know that good, intelligent people have walked in our shoes just makes me feel its ok...one way or the other i will get thru this. i am not crazy no matter how often that msessage is put my way.
it doesnt look like the link to the shows above will work..but if you go to
and scroll doen just a few pages...right under the pics of ketes...you will see 3 audios
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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lax mom
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posted
quote:Originally posted by Lymetoo: They didn't listen to how the test is interpreted?? I'm sure Dr H explained it all to them.
Yes he explained it, but no they didn't listen. Her husband (my father-in-law) is VERY left brained. They believed in the tests 100%. (Just like 90% of Drs do...that's the problem).
So, while their son has progressed miraculously through treatment, the mom still has MS. Tragic really.
The saddest thing is that she started having MS in her 20's and SHE HAD A TICK BITE IN HER 20's!!!!
posted
I agree with poppy - ALL seems a bit of overkill.
I mean top MS researchers are not idiots, aren't they? They also have some fancy lab gear, microscopes and access to post mortem tissue samples. If there was an infection, they'd find it.
But what I believe in is that a lot of people with _diagnosed_ MS have a wrong diagnosis because their neurologists screwed up and did not do enough differentials.
And since life is not fair, there is also a third possibility: some cases have both MS AND Lyme. There is no law against a person with MS being bitten by a tick, is there?
Canga
Posts: 14 | From Poland | Registered: May 2012
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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sutherngrl
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posted
The reason I have a problem with "all" is because my nephew has MS. He has done extremely well on MS meds. Seems like if he had LD that he would just go down hill. He hasn't had a problem with his MS in 10 years.
However, I still feel that something bacterial, or viral, or parasitic might be the trigger to MS and other neurological illnesses.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Razzle
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posted
quote:Originally posted by sutherngrl: The reason I have a problem with "all" is because my nephew has MS. He has done extremely well on MS meds. Seems like if he had LD that he would just go down hill. He hasn't had a problem with his MS in 10 years.
Not true in every case. I usually feel much, much better when taking Prednisone. And I've encountered others with Lyme/coinfections who have said the same thing.
I think it depends on the specifics of the individual and how the immune-suppressing medications they're taking interact in their body to reduce inflammation and possibly also alter how their body functions.
Example: Prednisone may make someone who has worn out adrenals feel better, even in the setting of chronic or severe infection.
And some ID docs prescribe steroids in addition to abx for certain infections specifically because of the anti-inflammatory activity of the steroids.
If the immune system is suppressed to the point that the Lyme bacteria are not feeling threatened, they can go on living comfortably and probably won't do as much damage and probably won't cause as much trouble.
This scenario can go on for years before the damage finally catches up with the person. But the damage is usually diagnosed as "end stage" MS or whatever the autoimmune disease is, instead.
Just my humble opinion, based on observation in multiple autoimmune support groups and from others I've known (family members, friends)...
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4167 | From WA | Registered: Feb 2011
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Catgirl
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Lax, that's a shame. Unfortunately the medical community shifted over to "evidence based medicine" in 2010 and people think a positive blood test is the only positive.
Lyme can change a person's dna and trigger autoimmune diseases and still hide when tested (maybe no symptoms too), and perhaps the newly triggered disease gains a foothold to proceed.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Catgirl
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posted
Awesome Lymetoo!
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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