May have found a way to treat and disable Lyme Neurotoxin - Part 3

Hi all,

I'm new to this forum and found my way here via a simple Google search on one of my symptoms.

I have the same ALS like symptoms are dacarte3 described below and it's really worrying me, since it’s progressing into worse in a rapid pace. My muscles and tissue/fat have completely wasted away in just a couple of months and feel very loose/soft/mushy. This not only applies to my arms and legs, but also in areas like my face, neck, hand and even my ding-a-ling.... Worst of all is the pain in my back and the rear of my head when lying down flat on my back, probably caused by the reduced supportive muscle and tissue in those areas. Also, my skin is thinning all over my body and has become stretchy in an abnormal way. The thinning is also visible in my mucous membranes and gums.

The most problematic thing is that I don't know what's causing all of my complaints including the ALS like symptoms. I first started to feel sick in January during a dinner at a local restaurant. Initial complaints were related to my GI tract, but three months later spread to other areas. In April I started to develop very odd symptoms like a sore throat, sleeplessness, skin rash/dry skin, hair loss (my lashes have all fallen out by now), joint pain, cracking/clicking joints, receding gums, red eyes, peeling lips, burning pain sensations all over, fungus nails and so on. In the first three months I had abnormal weight loss of 14 kg, but didn't have the muscle and skin issues. This has started since August.

Since this all began I have been to a number of different hospitals and have done a lot of examinations. The doctors all tell me something differently and have not been able to make a comprehensive diagnosis. So far I've had the following diagnosed conditions:

*gasteroenteritis
*gastritis
*colitis
*prostatis
*pharyngitis
*tonsilitis
*rhynitis
*laryngitis
*lactose intolerance
*too much fat in stool, cause not known
*SIBO
*compression of the left renal vein
*disturbed persistalis in duodenum
*compression of the celiac plexus
*human borna disease

I have been tested for Lyme once, but it turned out negative. However, I think that a lot of my symptoms resemble that of Lyme patients and I might need to repeat the test. However, in the meanwhile I looking into starting the same protocol as you guys for relieving the muscle / skin issues. Do you mind if I keep posting and share the result of my progress here? Also, which place would you recommend for testing Lyme?

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dacarte3 said...
notable update:

Muscle mass/tone/health - a lot of lymies with ALS like symptoms experience not just wasting but "flaccid" muscles or "mushy" muscles. The muscle is still there but flaccid and mushy.

I'm seeing noticeable improvement in this area. The forearm, a trouble spot for me is "filling" back out. The muscle tone isn't any bigger but my arm is filling out (literally).

For those that can relate, flaccid muscles and wasting in certain body parts become troubling "hollow" (literally, like the muscle and mass disappears and just leaves skin, blood, ligaments and maybe some fat), this was an issue with my fore arms especially.

It's filling in to the point I can notice a difference and when I flex the muscle is not flaccid. There's firmness and a elasticity to the firmness when pinching and poking this area, where before it was flaccid and "hollowed out".

Not to overstate this slight improvement (and possibly get ahead of myself), but the improvement is enough to actually notice and pay attention too.

It makes sense that if this protocol is healing the nerves and thus the ALS like symptoms that it would be very gradual, where existing muscles will get healthier first.

It will be terrific if additional muscle mass is actually created however this may require actual exercise to achieve.

If the flaccid/hollow issue continues to improve this may be a good sign that I can maybe, very slowly, re-introduce exercise.

Lapis my friend, if this continues and your beautiful mind actually found an effective remedy to lyme-ALS, you need to private message me so I can send you a gift. HA!

Thank you! Will have a look on their website!

I started the protocol last Saturday. Below's my dosage. I'll try to repeat this every two weeks with a one week break between.

Have developed tachycardia and shortness of breath since two days, not sure if it's related to the supps. Is there anyone on this forum who had the same experience?

* Alpha GPC Choline, two capsules / day, 200 mg per capsule
* EGCG, 3 capsules / day, 200 mg per capsule
* Huperzine A, two capsules / day, 200 mg per capsule
* DHA, 560 mg / day

2 Month Review. In this review I will have my one month status compared to my 2 month status:

Two Month Review (Neuro-lyme/symptoms):

1. Muscle Weakness - 1 month: Gone. 2 months: Still Gone

2. Muscle wasting - 1- month: halted. 2 months: still Halted

3. Muscle building - 1 month I wrote: re-introduced exercise. Muscle strengthening and growth occurring. However there isn't any clear "new" muscle being built, just strengthening and growth of existing muscle. But only re-introduced exercises a few ago, so even if brand new muscle were to be built it would still take a lot more time. Muscles growth happening quicker due to "muscle memory" (I use to work out a lot, the muscle cells retain "memory").

2 months: Working out 5 days a week. Muscle strengthening and growth continuing. The growth is filling out the areas that wasted. It's still not brand new muscle generation but the growth is substantial enough that it fills in the voids left behind. I think some of this is "aging" that lyme causes. I may have the body of someone 10 years older as far as muscle layout however like a person 10 years older than me you can still improve what you have and still look and feel great.

4. Muscle twitching - 1 month: 90% gone (this symptom use to be frequently throughout the day, daily).

2 month: 99% gone. I may have a mild twitch or two per week versus constantly all day long daily.

5. Off balance, wonky and wobbly legs - 1 month: 95% gone (very rarely happens and when it does only for a few minutes).

2 months: 100% gone.

6. Head fog - 1 month: 90% gone (even during a lot of mental exertion the head fog stays at bay).

2 months - this one is interesting. It's still 90%+gone, however huperzine A plays a key role in this. After I stop taking this daily (for it's claim it's best to pulse this so I take it every other day) the days I don't take it is when short term mild to moderate head fog tries to creep in for about 30 to 60 mins. But the days I take the huperzine A it's stays away and mental abilities are heightened.

My mind is so much clearer and works faster. It definitely boost cognitive function. It almost feels like the brain gets a turbo boost. I can think faster, process so much more information. Because of this it actually makes me more intelligent and articulate. I totally understand why graduate students are known to take this nootropic. It's important to note that this occurs with out feeling "high". It's a very natural feeling. You feel like you but just super sharper.

7. numbness and tingling (hands and lower arm) - 1 month: for me this only happens while sleeping. In the last 3 weeks since my last update this has only happened two out of the 21 nights. This symptom use to happen every night when I went to sleep or even took a nap during the day.

2 months: Same. Happens one night every two to three weeks. I'm still trying to find a pattern of what makes this happen sometimes but most of time it doesn't happen. I pretty much have the same routine daily so it's very strange. What on those nights are different? Is it something I eat some times? Is it because I didn't detox enough. Is it because I forgot to take something? Or is it simply because everyone once in a while a herx happens as the body tries to filter out toxins in these 2-3 week cycles?

I dont' know. I can't pin point the pattern with this symptom.

2 month conclusion: this protocol works and if you've been following this thread it makes logic and scientific sense why it would. Not often when it comes to lyme can we confidently say we really understand something or what to clearly do about it, but I believe this protocol is an exception.

I still believe this protocol is to help promote a better bodily environment to reduce and detox neuro toxins thus helping these symptoms, but ultimately the root cause, lyme and co, itself, needs to be addressed.

The roots and foundation of lyme treatment still must be performed correctly.

Reminder of my overall lyme treatment/protocol:

1. ABX for a good first punch. Was on multiple abx for 2-3 months
2 Herbs daily for the past 6 months.

Herbs include:

1. Japanese Knotweed
2. Cats Claw
3. Andiographis
4. Isatis
5. Houttinya
6. Cordyceps
7. Chinese Skullcap
8. Hawthorn
9. Buhner's Immune tonic (Rhodiola, Schisandra, Eleuthero)
10. Cryptolepis
11. Red Root
12. Ashwaganda
13. Milk Thistle

3. Diet - gluten free, low carb, no processed sugar. Daily Chaga mushroom tea. Daily probiotc foods - Kimchi and other Korean fermented vegetables (radish, bean sprouts, and cucumbers).

4. Neuro/CNS protocol - Huperzine A, Fish oil, Alpha GPC Choline, EGCG

5. Vitamins - D, E, NAC, and Zinc

6. Detox - Daily Lemon water; daily epsom foot soaks

7. Anti-fungal (because of all the abx and herbs)

Basically, be the healthiest person you can possibly be. And that's going to make you significantly better even if it's never at the pre-lyme level. 80-95% is still better then feeling and looking like death (I've been there). That's really the "answer" to lyme.

Girlie said...
Hey dacarte! thanks for coming back to post your update.


You're really doing well...this is great news!

How long do you plan on staying on your current protocol? Will you continue even when you've reached 100% ?

Yes, I plan on always optimizing my body for the rest of my life (what that is can change over time depending upon what my body needs). Lyme has thought me so much about biology. Striving daily for health optimization is never a destination (okay, I'm here, I made it, okay I'm done), it's a daily journey. Every day you have to fuel the body properly.

Human's peak physically at 18-22 years old after that the body is deteriorating at the cellular level. However this break down can be slowed significantly and one can age very gracefully.

So it's just a change in lifestyle. It's our obligation to fuel our bodies holistically and appropriately within our power everyday, whether one is dealing with lyme or not.

It sounds very simple and obvious, but most people don't and/or can't do this.

I am doing so much better, that I was starting to do that thing that most people do when they get better and that's stop coming on here and moving on with life.

But I had to return. It's the right thing to do. It's this forum that helped me get well and keep my sanity over the last 2 years.

LymeSick 🌟 said...
dacarte I'm happy for you and thank you for coming back to tell us.

I have a question, you think I can do your protocol without Fish Oil?

I'm not able to take fish oil, I tried many brands etc.

Yes, nothing in our research thus far suggestion fish oil is vital to this particular CNS/Neuro protocol.

Giving the brain more choline/ace and reducing if not halting the excessive break down of ace (keyword is excessive because they body naturally breaks down ACE at a certain "healthy" level) and then detoxing the neuro toxin is the bread and butter of this protocol.

This can be accomplished with Alpha GPC Choline, Huperzine A, and EGCG. Fish oil would act similar to EGCG. Basically a component to make the process work "better" not to make it work. It can work without it.

Bumping this up - was curious if there were any additional updates from others.

Also, did any of you decide to cycle on and off the stack? If so, were there any noticeable differences between being on and off, or was there a residual benefit during the off times?

So much appreciation for this info, I have all of the items to order, just trying to come up with a schedule. Also, it seems like this additional protocol is one where you would want all of the pieces together, rather than introducing one at a time...right?

MistyLaird said...
Bumping this up - was curious if there were any additional updates from others.

Also, did any of you decide to cycle on and off the stack? If so, were there any noticeable differences between being on and off, or was there a residual benefit during the off times?

So much appreciation for this info, I have all of the items to order, just trying to come up with a schedule. Also, it seems like this additional protocol is one where you would want all of the pieces together, rather than introducing one at a time...right?

I'm glad you brought this up because I meant to post about it.

My experience:

I've read from a lot of different sources that it can be pulsed/cycled. This pulsing has much to do with the fact it takes 12-24 hours for Huperzine A to cycle through a person system, so it's "unnecessary" to take it every day for forever.

I've read elsewhere that the body having too much ACE is also not good. Which I guess isn't a surprise because too much of anything in the is "not good" since our bodies are a delicate balance of things.

However, I believe cycling makes much more sense for those WITHOUT lyme disease or another variable creating neuro toxins that excessively destroys ACE.

The reason why I believe this is because the days I don't take Huperzine A: brain fog, eye pressure, and loopy feeling tries to rear it's head a bit. Nothing severe but enough to notice.

The days I do take it, it's like night and day. Like a switch has been flipped. A complete clear head. No eye pressure. Cognitive abilities is really sharp.

So my conclusion is for those with lyme and specifically neuro lyme, pulsing may not be necessary. Since we (lymies) have neuro toxins that excessively breakdown ACE we don't necessarily need to worry about "too much" ACE.

Even those with lyme it may vary of course. We all don't share the same toxin loads. We all don't necessarily have "neuro lyme".

I would recommend experimenting with it like I did and find what works best for you.

Lapis,

Any update from you?

MistyLaird said...
Thank you will look much!

Understood, we are really working on detox with the old school ID protocol (100 mg doxy) ...it's all we got right now. But I have all of the buhner protocol ready once we return from mayo.

Again...thank you, it has already been a big help for me.

Initial effects may include drowsiness until you get use to it. For both Lapis and I this occurred the first few days.

ccc-better said...
dacarte3 would you mind listing your protocol in detail here as a clear list of things with dosage and timings.

You mentioned cycling, but I couldn't find explicit details.

We've started with very low dose huperzine (25mg every second day), just to see what happens. It has indeed reduced brain fog substantially. We were already taking ECGC twice a day anyway as part of the Buhner protocol for Bartonella.

I'm assuming you mean the CNS/Neuro protocol and not my overall lyme protocol.

I take the protocol an hour or two before the part of my day where I want to be at my mental/cognitive peak. Around 1 or 2pm, I personally want to be in my cognitive prime for the day, so I take it around 11-12pm. Plus I have issues taking supps on an empty stomach so I like to take it with food (lunch).

But time of day is up to the user.

1. Alpha GPC Choline (which is NOT the same as simply choline): Once a day, 1200mg

2. EGCG: Once a day, 1500mg

3. Huperzine A: 200mcg, once a day; I've taken it both every day and every other day to experiment which works better. I'm coming to the conclusion it's not necessarily about some exact set schedule but more about listening to your own body. There may be stretches where it's daily and there may be stretches where breaks can be taken.

4. Fish oil: optional and random.

Great news dacarte! Thanks so much for sharing. I haven't been following this thread, so you may have already answered it, but does this protocol work on any source of neurotoxins (i.e. mold, bartonella, etc..) or just specifically Lyme?

Mister Mike said...
Great news dacarte! Thanks so much for sharing. I haven't been following this thread, so you may have already answered it, but does this protocol work on any source of neurotoxins (i.e. mold, bartonella, etc..) or just specifically Lyme?

This protocol was put together based on scientific literature that addresses the excessive breakdown of ACE. A specific lyme neuro toxin was identified as being the cause of excessive ACE breakdown and that's where the components of this protocol was studied for.

This protocol doesn't specifically target this particular neuro toxin, it just slows down the breakdown of ACE and replenishes it. It doesn't stop the neuro toxin.

That's why it has been stressed multiple times that this only addresses the symptom and does not stop the root cause.

A comprehensive lyme treatment must still be executed to stop the root cause from creating the toxin in the first place.

I guess you can extrapolate what we did here with this toxin that excessively breaksdown ACE and apply it to other neuro toxins lyme creates and the harm it does (in theory).

However, that is what a good holistic lyme treatment should do. Many lyme herbal protocols have been created with this in mind. There are herbs out there that were chosen as part of protocols because it does help the body detox toxins as well as replenish compounds and nutrients that these toxins hamper.

This protocol is just another piece to the huge lyme puzzle.

This protocol is what is what is called a nootropic stack. "nootropic" is just a $100 word meaning "brain vitamins". Vitamins for the brain is not talked about enough in the lyme world.