Anyone get diagnosed with ALS

I had twitching and muscle weakness early on - both are gone now due to treatment of lyme and co’s.

You mentioned a few rounds of abx - why aren’t you still treating?

Are you aware of Dr Martz story?
He was diagnosed with ALS and it turned out to be lyme. He treated it and is in remission.

Here’s dr Martz talking about it

https://m.youtube.com/watch?v=uy9fduldv6m

Amazing story

This is by far the scariest part of having Lyme. If you research deep enough you will find a startling and undeniable correlation between ALS and Lyme. Lou Gehrig, the famous baseball player for whom the colloquial nick name of ALS is named (Lou Gehrig's disease) owned a home in Lyme Connecticut.

Thats just one 'conspiracy theory' nugget. But the statistical correlations of this extremely rare 'disease' and people with Lyme or tickbite history is absolutely undeniable.

I spent many hours following blogs and go fund me pages of people who had Lyme and developed ALS. I used to research that and follow their journeys obsessively. I remembered their names and their stories. They had a big impact on me. If you want to know the darkest depths and deepest recesses of the Lyme world, and all thats been caused by underdiagnosis and misdiagnosis, and its worst impacts on humans, it is there. No matter how bad your symptoms get, its hard not feel lucky reading that stuff. But I always wondered and feared, "will I end up there? is that the inevitable progression of this disease." That to me was the biggest long term threat of this disease and I just wanted to know the worst cases. Some very sad, dark and scary stuff.

It can happen. Is it just overlap of symptoms, because Lyme is the 'great imitator"? who knows.

But there is definitely an overlap of symptoms. I used to go to neurologists to hopefully pin down my nerve problems. They were the worst medical specialists I ever dealt with. Even worse than ID docs. What an obscure little diagnostic science they have tried to develop. These guys are a wacky bunch, and i imagine in a couple hundred years we'll look back on the entire practice the same way we look at phrenology today.

BlueLyme summarized it beautifully in the HealingWell Quote of the Day........

"its a differential diagnosis of midevil neurogerbils that reveals the failure of hippocratic oath and the antiquated medical establishment"

That sentence summarizes the current practice of neurology batter than i ever could.

Their official neurology 'society' officially denies the existence of chronic lyme, and tows the same line as IDSA. So if a neuro doc even acknowledges Lyme in a diagnosis, he is risking his license. But they will gladly run mri's and the like and allow to chase your tail endlessly, OR until you check off all the little boxes and fit neatly into one of their cookie cutter 'syndromes', which as bluelyme pointed out, arent really diseases, but just a group of symptoms classified as a formal disorder.

One of the tests they ran on me was an EMG or electromyogram. This is a nerve conduction study where they put needles in your skin and mildly shock you with electricity ad then they can monitor if your nerves are responding properly.

I had a "borderline" EMG study that showed 'slowed conduction' in my lower extremities, but not so extreme it classified as a 'disease' so I was just told to monitor and retest every 3-5 yrs.

but I had undeniable nerve and cognition problems. They had me do basic cognitive tests and I scored in the senior citizen range at 34 yrs old.

They knew something was wrong with my entire nuero muscular system, but because they wanted to go out of their way to dismiss Lyme, and I didnt fit neatly into the other pre set categories of neuro "diseases" they said they 'didnt know' what was wrong, and on paper that goes down as nothing is wrong.

But I imagine if you had Lyme and never considered it, you could play this little game for years on end. You go the doctor because you dont feel right and they keep saying we see problems, but dont know what it is, to the point that it actually progresses to a disease that now fits the formal categorizations of ALS MS parkinsons, Alzheimers or many others.

So there is definitely a link. I am certainly convinced there is based on the stats and multitudes of both scientific and anecdotal accounts I have read. These diseases can cause neuro inflamation, and thats really all it takes. So if the damage is done by the pathogen itself or an auto-immune response is unknown. But the end result is nuero-cell death.

The progression is also unknown. In most it seems Lyme or other tick diseases can progress to that point if untreated for many years, but in other people the progression seems very rapid. Theres just so many variables including the particular species or strain of disease you get, which may have a greater or lesser affinity to attack motor neurons.

Needless to say its scary stuff. Statistically, by having been exposed to Lyme you are at much greater RISK of developing ALS MS, excetera, but overall your odds are still very slim. These are still classified as extremely rare diseases. So if .001% of the overall population gets ALS, and .02 of lyme sufferers eventually get ALS, its still very small risk eventhough it is multitudes higher than those in the general population. So the odds are still on your side.

I dont think all ALS is Lyme, as some would argue, but again there is undeniable overlap. So it may be one of the triggers that can cause ALS.

And imagine you are on the other side of the diagnostic coin. Imagine you have weird symptoms, go to a neuro doctor and they tell you that you have an extremely rare disease called ALS for which there is no treatment or cure. Ask yourself this question. Which would you rather have? Some people get an ALS diagnosis and then research and find the symptom overlap between Lyme and ALS and start to learn about the diagnostic murkiness of Lyme. You think maybe my ALS is Lyme. At that point these people would love to have a Lyme diagnosis, because even as uncertain and murky as testing and treatment are, there is still some hope for treatment as opposed to ALS for which there is none.

Some of these people may actually have Lyme and some may not. As Girlie brought up, a doctor in Colorado was formally diagnosed with ALS. He fit all of the formal diagnostic classifications of ALS, and his neuro doctor who was his friend and colleague diagnosed him. And he looked into the possibility of it actually being Lyme. Turned out it was. He tested positive through a highly specific urine antogen test. He then went through an extremely agressive IV antibiotic protocol that used double the recommended dose of IV rocephin for several months. And it worked. He went back to his neuro doctor friend and got a clean EMG. His ALS was gone. People dont realize how rare that is. If you get a formal ALS diagnosis, regardless of the cause, whether its Lyme or something else, the damage is always progressive and irreversible. And if that happened to a doctor, i imagine the same has happened to many others as well.

So dont panic, Dont get terrified and assume your on a one way collision course with ALS.

But i think it's important for people with Lyme and tick diseases to be aware of the connection. Not to terrify you, but to realize what the real stakes of this disease can be, and to be conscious of the depths of pain suffering and hoplessness this disease can bring in it's worst forms, and to in some ways, feel the pain of those worst afflicted in this Lyme tragedy. I think it's helpful to try to walk in their footsteps and hear their stories. So I immersed myself in them. That was a dark part of my journey, but looking back I feel it was a very important one for me. It helped me to put things into perspective and be humble, but aware. I will always have a place in my heart for the people at the very bottom of this seemingly bottomless abyss of a disease. i feel for this group of people, this group I never knew existed 5 years ago.

So be aware of it but dont panic. For a while i panicked when I had a borderline EMG and I had symptoms that were consistent with ALS. In my first Lyme doctor visit to an ID doc I mentioned this and they put it in the medical report 'patient believes he has ALS like symptoms." They were calling me insane basically and they wanted to make sure that fact went in the report.

But for me the ALS type symptoms subsided with time and treatment. True ALS is irreversable nerve damage. So if you lose an ability, you never get it back. I had points in my disease where I couldnt walk properly. I had no balance and tripped over myself like a drunk. These symptoms got better so I stopped fearing ALS.

But remember this group of diseases attacks neurons, so everyone should treat in a way that protects the neurons. Many of Buhner's herbs are neuroprotectants that also cross the blood-brain barrier. So they can protect the neurons and kill the pathogens that may be in the brain at the same time. Even doxycycline and minocycline have been proven to act as neuroprotectants. They have done studies giving ALS patients tetracyclines.

Now that i am better I supplement with Lions Mane mushroom. This is one of the only substances that is not only a neuro-protectant, but it has also shown the potential to actually regenerate neurons.

Its scary stuff. but its important to know what could be at stake, even if the odds of that happening are very low. Just let that serve as a motivation to you in your treatment.

Thanks so much for the post and information.

This has been one of my biggest fears (Lyme induced ALS), its why I went back to treating with both ABX and Herbals together.

Also eliminating any other issues that have been stalling my getting to remission, yeast, mold, toxoplasmosis ,stress and now needing to focus on a stricter diet.

I believe you are correct about the Buhner herbals,
I have always believed that the Buhner herbals for Neuro Lyme are critically important.

Thanks again.

just chiming in, for ppl thinking neuro degenerative disease, what ever the cause, is not helped by diet:

"Professor Hawking supplements his diet with daily mineral and vitamin tablets, and zinc, cod liver oil capsules, folic acid, vitamin B complex, vitamin B-12, vitamin C and vitamin E are said to have been particularly helpful. He also follows a diet free of gluten and vegetable oil and avoids convenience foods; quite recently he started to include a small amount of dairy produce."

https://www.ncbi.nlm.nih.gov/pmc/articles/pmc1123440

he lived 50+ years with ALS, been given 1-2 years max by doctors....

just some food for thought for the ALS fearful.

Post Edited (mpost) : 12/21/2019 7:25:00 AM (GMT-7)

"90% of these "MS" people could not think outside of the box that conventional western medicine put them in. They were passing around cookies and junk food treats as this was the normal start of the meeting LOL. I brought up my questions and was looked at with very inquisitive faces. "

yeah i really cannot understand how you can have an autoimmune disease for decades and not try one year of your miserable life to see if an autoimmune diet helps you. just remove the obvious things: gluten, dairy, optionally eggs. see if u feel better after 6 months. the world will not end for you if you dont eat bread and milk for half year.

but it is socially very hard. i am gluten and dairy free and i DO NOT CHEAT. ever. it is hard to hang out with friends. food becomes a real problem and u are seen as a nut job. especially doctors , they know genetic gluten intolerance is rare and gluten+dairy is almost none existing. so they look at you like an insane person.

however if u read the literature u find a lot of issues with dairy gluten and immune system even in healthy ppl. and it is normal. these foods are very new for our genome thousands/tens of thousands of years in the past. that is nothing for gene evolution. so we are barely capapble to eat some of these proteins. add to that a freaked out immune system and u got yourself a nice autoimmune disease.

presently i am 99.9% recovered, i take no lyme medication and i continue gluten/dairy free. i had a scare 4m ago,i thought i relappsed, but it turned out to be just flu, runny nose, fever, cough, etc....

Logmoss82 can you tell me how long you were treating before you had considerable improvement. I have the same debilitating symptoms; difficulty walking and also has affected my speech, I have been treating for a year but took 2 years to be diagnosed as usual. Any insight you can offer will be greatly appreciated.

sdarrah - it affected my speech too. People noticed the slow speech as I was constantly searching for words. Luckily I don't have a people job. It vastly improved. It was the worst when my whole body was "toxified" from all the abx and die-off.

In times of very low thyroid, this also happened.

I've since noticed that about 10-20% of the general public over about 50 years old has some degree of this too, less than lymies though.

Some symptoms do take a long time to resolve.

I’ve been with my current LLMD for almost 2 years (and treated for a couple years prior with a LLND)

My first symptom is still hanging on - while 30+ have resolved.

Did you treat Babesia with Mepron or Malarone?

Edited - been with current doc for 2 years (not 3)

How about Bartonella - what did you take for it?

sdarrah said...
I am taking Bactrim

If you don’t get good results with the Bactrim - you could look into Rifampin or Rifabutin - they are known to be more effective than bactrim.

Quote from Dr. K in Washington: "We have never had in the last five years a single MS patient, a single ALS patient, a single Parkinson's patient who did not test positive for Borrelia Burgdorferi. Not a single one."

We know these diseases exist, but we don't know what causes them. Isn't it possible that they are caused by a bacteria? I would argue that it is actually likely. Treat the infection, and you will recover. Kris Kristofferson was diagnosed with Alzheimers. Luckily, his wife did her homework. After being treated for Lyme, his Alzheimers was miraculously cured. It is absolutely criminal that the possibility that these horrible diseases are caused by bacterial or viral infections and could possibly be treated or even cured isn't even considered or allowed to be researched.