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Confused about Lyme

Messages
34
Location
Melbourne
The Freddd methylation protocol was developed by a PR member named Freddd who has some interesting genetics. People around here tend to use it as a "one size fits all" protocol, which is not the best idea.

Methylation is a process that happens in our cells, and is essential for proper immune system function, DNA replication, neurotransmitter production, detoxification, cell membrane health, etc.

It involves folate, B12, B2, B6, trimethylglycine, magnesium, potassium, methionine, and other nutrients, and produces glutathione, an important antioxidant used in immune function and detoxification.

Depending upon the mix of genetic SNPs you were born with affecting methylation, your environmental exposures, which place demands on it, as well as competition by other body biochemical processes for the various nutrients, your needs for these nutrients will be unique to you, and its highly likely not what Freddd found worked for him. (His protocol would make me quite sick.)

Having an imbalanced or inadequate methylation process can produce a plethora of unpleasant symptoms and promote disease, even cancer. It's very wise to have comprehensive nutrient testing to guide dosing of nutrients, like a Genova Diagnostics NutrEval test.

As you implement it, its wise to ensure the toxins you begin to mobilize are eliminated easily through your intestines. Drinking water, eating fiber, and using binders are strategies that help, as well as attending to your microbiome. Having adequate B1 and molybdenum and having adequate protein (amino acid) intake are essential, too.

Your needs will likely change over time, so adjusting your protocol every few months is wise.

There are a lot of resources on this site and across the internet for learning more.

Oh thank you Learner that's a really good explanation! I've been told I'm homozygous for the MTHFR genetic deficiency thingo, and I know that affects methylation, so I've been taking glutathione daily. The NutrEval test sounds like a good idea. Just need to save up and decide which tests to get! I'll do some more research to find the right protocol for me. :)
 
Messages
34
Location
Melbourne
If you had a positive result for Lyme at the Geelong lab, there's almost no doubt about the infection being real. The Geelong lab has a terrible reputation for false negatives.

There are a few options for Buhner herbs - the best approach is to simply buy Buhner's book and start with one or two of the herbs and see if they do anything. For example, we saw an almost instant response to Japanese knotweed (reduced irritability within about half an hour from just a few grains of powdered herb) and sida acuta (herxed from just a drop). That had us convinced.

This facebook group has been really useful: https://www.facebook.com/groups/1441091676154216/, and it will help you source the herbs in Australia.

As for the Freddd methylation protocol ... Freddd has a quick and dirty diagnostic, which is to slip a sublingual B12 under your tongue and see what happens. A positive effect, even if small, means a B12 deficiency at the least - for example, my son's vision and colour perception noticeably sharpened within minutes. We haven't really aimed to treat methylation, but just to get the B12 systems working again (apologies here if the terms are scientific enough). For us, the real issue was probably more a B12 and B2 deficiency, quite possibly from untreated bacterial and parasitic infections.

Australian sources:
Most Lyme etc herbs - start with just a crumb or powder or a drop of liquid:
  • Japanese Knotweed: Herbology (in Western Australia) - we buy the powder and chug 1/4 tspn down with OJ.
  • Tinctures: Mullumbimby herbals (in NSW) (good for a weak sida spp, and great for many other herbs)
Freddd B12 etc - find a doctor if you're planning to do more than see if B12 helps.

Wait so, it's probably a real positive?

and thank you for all the resources, this is amazing - I've used iHerb before and it's so great. I didn't think of getting B12 there though! I'll order some, my sister has started trying it and it's helped her a lot. You're the best.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Oh thank you Learner that's a really good explanation! I've been told I'm homozygous for the MTHFR genetic deficiency thingo, and I know that affects methylation, so I've been taking glutathione daily. The NutrEval test sounds like a good idea. Just need to save up and decide which tests to get! I'll do some more research to find the right protocol for me. :)
Yes, definitely learn more about the methylation cycle and do the NutrEval test if you can - in many places they have a discounted pre-pay program which makes it more affordable.
 

CCC

Senior Member
Messages
457
Wait so, it's probably a real positive?
and thank you for all the resources, this is amazing - I've used iHerb before and it's so great. I didn't think of getting B12 there though! I'll order some, my sister has started trying it and it's helped her a lot. You're the best.

It's almost certainly a real positive. I've never heard of a false positive from that lab, but there have been lots of false negatives.

If you go down the Buhner path, you should

You are very fortunate to have a Lyme literate GP. Keep him in the loop because some people do need antibiotics to get better. Even if you do, it will be easier

I have also found the LymeNet forum (http://flash.lymenet.org/scripts/ultimatebb.cgi) to be really useful.

Finally - did you say you are starting uni this year? That would make you the same age as my son. I'm impressed you finished year 12.
 
Messages
85
Have you been tested for the usual suspects in ME/CFS: coxsackievirus B, echovirus, Epstein-Barr virus, HHV-6 and cytomegalovirus? Those are the pathogens ME/CFS specialist doctors will normally check you for, and treat you accordingly if you have a chronic active infection with any one of these viruses. More info on testing in this roadmap of chronic fatigue syndrome treatment.





I hope you did not get tested for Borrelia at ArminLabs for Lyme, because they seem to find almost everybody positive, even perfectly healthy people. There was a recent journalistic enquiry into ArminLabs, where a group of healthy journalists sent their blood samples to ArminLabs to be tested, and all came back positive for Lyme.

Lyme does not exist in Australia, so presumably all you family should have tested negative for Lyme, unless you were exposed while in another country.

There may be a tick-borne Lyme-like illness in Australia though, but it's not caused by Borrelia.
The bacteria Borrelia Burgdorfi is a spirochete treatable for at least three by oral doxicycline or if that does not work by intravenous rocephin. Try and find a receptive physician to prescribe treatment. Then we would proceed to other approaches or diagnoses. Side effects of doxicycline are relatively small. Allergic effects are unusual.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
The bacteria Borrelia Burgdorfi is a spirochete treatable for at least three by oral doxicycline or if that does not work by intravenous rocephin. Try and find a receptive physician to prescribe treatment.
My daughter has Lyme. She was on the antibiotics you mention for 8 months a couple of years ago. She still has it. Our doctor, who is very familiar with all current Lyme thinking and clinical experience, says that they've learned no one really gets rid of Lyme and they found that even having patients on antibiotics for years, it was still there.
Then we would proceed to other approaches or diagnoses.
The only thing I've seen anywhere that helps a lot is 10 pass ozone, done intensely for awhile, and then a maintenance dose every 2-3 months.

What other treatments are there that get people their lives back?
Side effects of doxicycline are relatively small.
After IV doxycycline for 4 months (IV to avoid impacting the gut...), my microbiome diversity went down to 17%. . My daughter ended up with an overabundance of clostridium difficile, notorious for causing violent diarrhea.

A disrupted microbiome is at the root of a long list of serious health priblems, including ME/CFS.
 

Mel9

Senior Member
Messages
995
Location
NSW Australia
My daughter has Lyme. She was on the antibiotics you mention for 8 months a couple of years ago. She still has it. Our doctor, who is very familiar with all current Lyme thinking and clinical experience, says that they've learned no one really gets rid of Lyme and they found that even having patients on antibiotics for years, it was still there.

The only thing I've seen anywhere that helps a lot is 10 pass ozone, done intensely for awhile, and then a maintenance dose every 2-3 months.

What other treatments are there that get people their lives back?

After IV doxycycline for 4 months (IV to avoid impacting the gut...), my microbiome diversity went down to 17%. . My daughter ended up with an overabundance of clostridium difficile, notorious for causing violent diarrhea.

A disrupted microbiome is at the root of a long list of serious health priblems, including ME/CFS.


Antibiotics did have a bad effect on my gut for a short time, but now, a year later, with good diet, anti- fungals and probiotics (and avoiding milk products) I believe it has stabilised to a new healthy biodiversity free of Clostridium difficile and other pathogens.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
From everything I've seen, its likely still there. So, what will you do when it flares again? More antibiotics? Maybe with dapsone? (I'm not trying to be impertinent, but as this is in my family, trying to understand long term planning.)
 

Mel9

Senior Member
Messages
995
Location
NSW Australia
From everything I've seen, its likely still there. So, what will you do when it flares again? More antibiotics? Maybe with dapsone? (I'm not trying to be impertinent, but as this is in my family, trying to understand long term planning.)


There is a lot of trial and error involved . You and your doctor need to try treatments, wait a while and make decisions on the basis of how you feel, both in terms of the Lyme-like malaise and the ME- like PEM.

Example: two daily antibiotics, vit B12. CoQ10, cumin tea, Basica alkalising powder plus a pulsing ‘cyst buster’ were essential for my well being for over 18 months, although I still was a long way from feeling normal (I was very fit before I became ill).

Two months ago, My LLD added another antibiotic plus a few supplements and sauna sessions to increase the efficacy of the antibiotics. I was just starting to feel really well but then The nurse at My local GP decided to stop my weekly B12 injection and I was instantly depressed, miserable and found my PEM worse again.

Then, reading PR (so many intelligent posters!) led me to discovering sub-lingual (under the tongue) B12 which caused almost instant improvements in my health again.

From being unable to walk 100m without severe PEM, yesterday I walked 3km (Very slowly! 90 year olds were power walking past me).

But I am spending the morning in bed in case of a sneaky PEM ‘surprise’.

I think that once you have this Lyme-ME/CFS. ‘thing’, you may never be able to stop Pacing. However, in my case, antibiotics ( whether bacteriostatic or bactericidal) have been essential to get to a state where I feel happy to be alive.
 

frozenborderline

Senior Member
Messages
4,405
The only thing I've seen anywhere that helps a lot is 10 pass ozone, done intensely for awhile, and then a maintenance dose every 2-3 months.

What other treatments are there that get people their lives back?
Interesting, I’m in a mold group and one of the only treatments that any of the members rave about , since most of it is about avoidance not meds, is ten pass ozone. Although it’s very expensive
 

Mel9

Senior Member
Messages
995
Location
NSW Australia
I am still not rid of the infection.

I was ‘pulsing’ antibiotics and spent weeks on and then a week without any antibiotics. For various reasons I delayed going back onto antibiotics for ten days this time and

Became very, very ill (different feeling from PEM)

now that I am back on antibiotics, I feel completely better again.

How many more years of this?
 

duncan

Senior Member
Messages
2,240
I've tried the dapsone protocol. It did not work for me. I think @Mel9 has it right. You try to keep trying to you find something that helps, something that moves you in the right direction.

Easier said than done.

I think some of us will never be rid of this. The chimera theory is sounding more and more plausible.
 
Last edited:

Mel9

Senior Member
Messages
995
Location
NSW Australia
I've tried the dapsone protocol. It did not work for me. I think @Mel9 has it right. You try to keep trying to you find something that helps, something that moves you in the right direction.

Easier said than done.

I think some of us will never be rid of this. The chimera theory is sounding more and more plausible.


Sounds as though we are both getting discouraged @duncan
 

duncan

Senior Member
Messages
2,240
As refrains go, Keep On Keeping On is ok I guess. It is one thing to deal with a relentless disease that gives no quarter, It's 100% worse with two such diseases, both of which are the brunts of calumny and cruel government campaigns.

The whole cesspool is made all the worst by the outright lies told by so-called experts who seem intent on gaslighting an entire population of very sick people, content with letting them languish in poverty and disease until they die while mis-characterising them as whiners and malingerers deserved of little more than societal contempt and condemnation.

But I hope I'm not coming across sounding as if I'm discouraged. :)
 

Hope4

Desert of SW USA
Messages
473
@duncan. Thanks for writing that, and so very well. The situation you so aptly described is a great part of why I signed up at this forum. And yes, to the "keep on keeping on".

I always enjoy reading your posts. :)