Anything new in cfs research ie Antibiotics

[heapsreal]

Always feel better on antibiotics. The last 18months has made it hard to get antibiotics online. But finally back on some.

Is there any new research showing bacterial infections like mycoplasma etc are an issue in cfsme?

Ive read Garth Nicholsons stuff but wonder if anyone is persuing his research further?

Cheers

 

[Hip]

Is there any new research showing bacterial infections like mycoplasma etc are an issue in cfsme?

Dr Markov believes ME/CFS is caused by a chronic-low level bacteria dysbiosis of the kidneys, which is constantly secreting an array of bacterial toxins into the bloodstream. It is the toxin-filled blood which is then proposed to cause ME/CFS.

Dr Markov performed a toxicological study on hundreds of ME/CFS patients, and found they have high levels of bacterial toxins in their blood. I don't think any other researchers have looked at bacterial toxins in the blood of ME/CFS patients (apart from one study looking at the bacterial toxin LPS, which was found to be high).

See: Dr Markov CBIS theory of ME/CFS.

 

[heapsreal]

As i have mentioned above ive responded well to certain abx, doxycycline and bactrim. When i look at my symptoms its possible theres borrellia, babesia, bart and myco but its so dam hard to distinguish between them going by symptoms. Again testing is limited here in Australia. I do think the chronically low neutrophils may indicate something bacterial going on.

So im really making an educated guess. Adding things one at a time and looking at more herbals as well as things that can hit multiple infections.

I started doxy in sept and had some die of symptoms but manageable. I add artemesia mid sept and no extra symptoms. So stayed on doxy, artemesia and did 10days bactrim and felt good on it but will look at cycling it 10days on 10 days off. Monday my Cryptolepis arrived and started it straight away. Its only been 3 days and fatigue is intense. This afternoon herxing with headaches and joint pains. Extra lyrica and tramadol are helping me currently. Oh i did add skullcap a few days ago as i found have half used bottle and recently read it has effects againsts borrellia.

So as it stands,
Doxy
Bactrim 10 days on 10 days off but may not need it if crypto is kicking my arse
Artemesia
Cryptolepsis
Skullcap
Berberine i took before doxy and overlapped some with doxy a week or so. Will add berberine in again abit later.
Rifampin and flagyl on the way but will hold of for awhile. And wont use more than 2 abx together.

Interested to hear others thoughts especially on Cryptolepis as its kicking my big white arse.

Still on famvir as herpes virus from the start have been an issue. I believe the relapse happened due to shipping issues with famvir as well as being off any abx for almost 2 years. My immune system isnt syrong enough to keep everything under control.

I really dont know if i have lyme and coinfections but improve on abx. I had 3 good yrs 2017-2019 where i was on famvir and cycled off and on bactrim and doxy. So im revisiting what was working, plus my general health supps ive been on for yrs.

 

[Learner1]

Is there any new research showing bacterial infections like mycoplasma etc are an issue in cfsme?

Mycoplasma is indeed an issue for PWME. Reading through today's comment, I can tell you that my ME/CFS specialist prescribed a combination of azithromycin, rifampin, and doxycycline together to hit different life cycle phases. I had chlamydia pneumoniae as well, So this treatment plan was for both, and it seemed to have been successful. I have also done both valgancyclovir as well as Famvir for multiple herpes viruses and those helped. Artesunate/artemisinin did not help, though the literature is good on them.

I didn't gain much traction with the infections until my immune system was supported. Have you had various kinds of immune function testing, I can't remember... Things like NK cell function, T cell and B cell panels, and immunoglobulins plus subclasses. We learned I had an immunodeficiency, and that was why some good treatments didn't affect the infections the way they should have. Once I was on immunoglobulins as well as the antivirals and antibacterials, I started to gain traction.

One thing to be aware of, is if you've been on antibiotics quite a bit, your microbiome may not be optimal, And you may be missing bacteria that are responsible for certain tasks, ones which affect your immune system and other functions. And you may have an oxalate problem That can cause a cascade of other symptoms, complicating things - see the thread I started on oxalates a while back.

Ive read Garth Nicholsons stuff but wonder if anyone is persuing his research further?

I have done a lot of work with Nicholson's protocols, particularly the lipid replenishment as well as the mitochondrial nutrients. It has been very helpful.

Best wishes...

 

[heapsreal]

Mycoplasma is indeed an issue for PWME. Reading through today's comment, I can tell you that my ME/CFS specialist prescribed a combination of azithromycin, rifampin, and doxycycline together to hit different life cycle phases. I had chlamydia pneumoniae as well, So this treatment plan was for both, and it seemed to have been successful. I have also done both valgancyclovir as well as Famvir for multiple herpes viruses and those helped. Artesunate/artemisinin did not help, though the literature is good on them.

I didn't gain much traction with the infections until my immune system was supported. Have you had various kinds of immune function testing, I can't remember... Things like NK cell function, T cell and B cell panels, and immunoglobulins plus subclasses. We learned I had an immunodeficiency, and that was why some good treatments didn't affect the infections the way they should have. Once I was on immunoglobulins as well as the antivirals and antibacterials, I started to gain traction.

One thing to be aware of, is if you've been on antibiotics quite a bit, your microbiome may not be optimal, And you may be missing bacteria that are responsible for certain tasks, ones which affect your immune system and other functions. And you may have an oxalate problem That can cause a cascade of other symptoms, complicating things - see the thread I started on oxalates a while back.

I have done a lot of work with Nicholson's protocols, particularly the lipid replenishment as well as the mitochondrial nutrients. It has been very helpful.

Best wishes...

My immunoglobulin subclasses were normal although igg was high on several occasions it was tested. Plus its a strict criteria to get ivig here

As for the microbiome ive always used probiotics and every so often a systemic antifungal. No abx used for last 2 years. Currently i take 1 nystatin every morning and high dose multiple organism probiotic every night. One reason for the move to herbal anti infection fighters is they are gut friendly.

 

[heapsreal]

@Lerner1
I have done a lot of work with Nicholson's protocols, particularly the lipid replenishment as well as the mitochondrial nutrients. It has been very helpful.

Best wishes...[/QUOTE]
Can you expand on this please? Im probably taking similar supps etc

 

[Learner1]

One reason for the move to herbal anti infection fighters is they are gut friendly.

How are you so sure?

Can you expand on this please? Im probably taking similar supps etc

See attached...

 

[GlassCannonLife]

How are you so sure?

See attached...

Doesn't it bother you that they claim a 43.1 % fatigue scale reduction in CFS patients after 8 weeks of taking their lipid supplement? Seems like they're exaggerating any benefits doesn't it?

I wonder if this form is superior to just getting enough phosphatidylcholine/serine etc from lecithin etc. I am currently trying to determine this, but there is a lot of marketing hype used around the NTfactor products that is triggering supplement con red flags in me and making it harder to find the truth of it all..

 

[Judee]

Always feel better on antibiotics.

I also feel better on antibiotics. Still don't get a lot of energy but they do something for me. My mood definitely improves and other things seem to stabilize for me.

Adding things one at a time and looking at more herbals as well as things that can hit multiple infections.

I like Dr Marty Ross' website because he gives both traditional (antibiotics) as well as herbal treatment protocols for the different infections. https://www.treatlyme.net/lyme-disease-treatment-guidelines/

Also if you're looking for a topic (for instance Bartonella) do a search as well because often he covers it on more than one post.

I've also been trying the herbals more since getting antibiotics is hard. So far herbals don't seem to work as well for me as the abx (antibiotics). I have very strong reactions to them though so I have to do tiny amounts when I add a new one in.

 

[heapsreal]

I also feel better on antibiotics. Still don't get a lot of energy but they do something for me. My mood definitely improves and other things seem to stabilize for me.



I like Dr Marty Ross' website because he gives both traditional (antibiotics) as well as herbal treatment protocols for the different infections. https://www.treatlyme.net/lyme-disease-treatment-guidelines/

Also if you're looking for a topic (for instance Bartonella) do a search as well because often he covers it on more than one post.

I've also been trying the herbals more since getting antibiotics is hard. So far herbals don't seem to work as well for me as the abx (antibiotics). I have very strong reactions to them though so I have to do tiny amounts when I add a new one in.

Interesting, i like Marty Ross too, has a balanced view on things.
I think herbals incombo are the go. Cryptolepis is the one herb before this thread i havent tried, but seems to get reviews for babesia as high as abx and less sides. Many use it after getting better as a maintenance thing and seems safe long term. I hope so anyway

 

[Learner1]

Doesn't it bother you that they claim a 43.1 % fatigue scale reduction in CFS patients after 8 weeks of taking their lipid supplement? Seems like they're exaggerating any benefits doesn't it?

I don't take conclusions like this at face value. I look at the trend, and the explanation, and look at how it might affect me. Then I try it. The basic mechanism here is that as mitochondria die off and are recycled, they are picking up the new lipids to form the new membranes. This process happens about every 6 to 8 weeks. It is iterative, where I'm pretty sure you need several cycles of recycling to really end up with improved mitochondria. So, I'm doubtful that 2 months would make a huge difference, but I have had improvements over 2 years.

I wonder if this form is superior to just getting enough phosphatidylcholine/serine etc from lecithin etc. I am currently trying to determine this, but there is a lot of marketing hype used around the NTfactor products that is triggering supplement con red flags in me and making it harder to find the truth of it all..

The benefit to the NT product Is that it has the correct ratio of each of the different phospholipids needed to make the membranes. The lecithin is not adequate and it needs to go through multiple conversions. I am also not a fan of soy which is what most lecithin comes from, and I'm definitely not a fan of RoundUp.

 

[GlassCannonLife]

I don't take conclusions like this at face value. I look at the trend, and the explanation, and look at how it might affect me. Then I try it. The basic mechanism here is that as mitochondria die off and are recycled, they are picking up the new lipids to form the new membranes. This process happens about every 6 to 8 weeks. It is iterative, where I'm pretty sure you need several cycles of recycling to really end up with improved mitochondria. So, I'm doubtful that 2 months would make a huge difference, but I have had improvements over 2 years.
The benefit to the NT product Is that it has the correct ratio of each of the different phospholipids needed to make the membranes. The lecithin is not adequate and it needs to go through multiple conversions. I am also not a fan of soy which is what most lecithin comes from, and I'm definitely not a fan of RoundUp.

Hm true, it seems disingenuous of them to make those claims though, and then use them to sell products at drastically inflated prices.

Is this the product you used? https://au.iherb.com/pr/nutricology-ntfactor-energylipids-powder-5-3-oz-150-g/45698
NTfactor seems to refer to a whole line of different things so I wasn't exactly sure.

That product appears to be soy derived, so perhaps it's not the right one? I purposefully take sunflower lecithin as to avoid soy. I saw mepedia also has an article on NTfactor and they say: "NT Factor is a purified soy extract consisting only of food and food components including..." so maybe all of them are soy derived?

Do you know if they did any studies comparing supplementing the NTfactor product and supplementation of normal sunflower lecithin? Eg https://au.iherb.com/pr/now-foods-sunflower-lecithin-pure-powder-1-lb-454-g/59514

The sunflower lecithin has the following breakdown of components:
Phosphatidylcholine: 25 %
Phosphatidylinositol: 18 %
Phosphatidylethanolamine: 11 %

From the NTfactor patent, I got the following:
The composition of claim 2 having about 7% phosphatidic acid (PA), 5% phosphatidylglycerol (PG), about 24% phosphatidylcholine (PC), about 20% phosphatidylethanolamine (PE), and about 14% phosphatidylinositol (PI).

In that one composition at least, it appears to have the same phosphatidylcholine content percentage-wise, somewhat similar inositol and almost double the ethanolamine. The other minor components don't seem to be listed on the Now Foods product but when I read about lecithin they were mentioned - perhaps they just aren't of enough interest to warrant labelling. The NTfactor patent does list a number of other breakdowns but it is unclear when they would be using those or if they just want to cover as much as they can with the patent.

In any case, please let me know if you know of a different NTfactor product that I wasn't aware of, or if I am misunderstanding something here. From what I know currently, it seems like NTfactor just patented a blend of lecithin mixed with a few vitamins, minerals, etc and use this to sell their product at a greatly increased price. I would love to be proven wrong as I would definitely appreciate having more energy!
But at this stage it seems that supplementing a (non-soy) lecithin would achieve the same results?

 

[Wishful]

The benefit to the NT product Is that it has the correct ratio of each of the different phospholipids needed to make the membranes.

Is there a 'correct ratio' for all people when we all differ so much in terms of absorption rates, transport rates, and utilization rates in different parts of our bodies? I expect that our microbiomes absorb any lipid intake at different rates, changing the ratio even before it passes our intestinal walls. Does having a surplus of one type of lipid cause problems for making cell membranes? If not, then simply taking more of a non-optimal ratio should be just as effective. I doubt that our prehistoric (and even later) ancestors carefully optimized their lipid ratios, and they survived famines, seasonal changes in diet, and they thrived.

Marketers try to convince people that they'll suffer horribly if they don't get their RDA for every nutrient ... because that's how to sell lots of profitable supplements. I stayed on a very nutrient-poor diet for over a year, yet didn't notice any deficiency symptoms. Does regular canola oil have the perfectly optimized ratios of those vital lipids, because that's where my lipids came from during that period?

 

[Learner1]

Is there a 'correct ratio' for all people when we all differ so much in terms of absorption rates, transport rates, and utilization rates in different parts of our bodies? I expect that our microbiomes absorb any lipid intake at different rates, changing the ratio even before it passes our intestinal walls. Does having a surplus of one type of lipid cause problems for making cell membranes? If not, then simply taking more of a non-optimal ratio should be just as effective. I doubt that our prehistoric (and even later) ancestors carefully optimized their lipid ratios, and they survived famines, seasonal changes in diet, and they thrived.

Marketers try to convince people that they'll suffer horribly if they don't get their RDA for every nutrient ... because that's how to sell lots of profitable supplements. I stayed on a very nutrient-poor diet for over a year, yet didn't notice any deficiency symptoms. Does regular canola oil have the perfectly optimized ratios of those vital lipids, because that's where my lipids came from during that period?

I think you should read Garth Nicolson's story and research.

 

[Learner1]

Hm true, it seems disingenuous of them to make those claims though, and then use them to sell products at drastically inflated prices.

Is this the product you used? https://au.iherb.com/pr/nutricology-ntfactor-energylipids-powder-5-3-oz-150-g/45698
NTfactor seems to refer to a whole line of different things so I wasn't exactly sure.

That product appears to be soy derived, so perhaps it's not the right one? I purposefully take sunflower lecithin as to avoid soy. I saw mepedia also has an article on NTfactor and they say: "NT Factor is a purified soy extract consisting only of food and food components including..." so maybe all of them are soy derived?

Do you know if they did any studies comparing supplementing the NTfactor product and supplementation of normal sunflower lecithin? Eg https://au.iherb.com/pr/now-foods-sunflower-lecithin-pure-powder-1-lb-454-g/59514

The sunflower lecithin has the following breakdown of components:
Phosphatidylcholine: 25 %
Phosphatidylinositol: 18 %
Phosphatidylethanolamine: 11 %

From the NTfactor patent, I got the following:
The composition of claim 2 having about 7% phosphatidic acid (PA), 5% phosphatidylglycerol (PG), about 24% phosphatidylcholine (PC), about 20% phosphatidylethanolamine (PE), and about 14% phosphatidylinositol (PI).

In that one composition at least, it appears to have the same phosphatidylcholine content percentage-wise, somewhat similar inositol and almost double the ethanolamine. The other minor components don't seem to be listed on the Now Foods product but when I read about lecithin they were mentioned - perhaps they just aren't of enough interest to warrant labelling. The NTfactor patent does list a number of other breakdowns but it is unclear when they would be using those or if they just want to cover as much as they can with the patent.

In any case, please let me know if you know of a different NTfactor product that I wasn't aware of, or if I am misunderstanding something here. From what I know currently, it seems like NTfactor just patented a blend of lecithin mixed with a few vitamins, minerals, etc and use this to sell their product at a greatly increased price. I would love to be proven wrong as I would definitely appreciate having more energy!
But at this stage it seems that supplementing a (non-soy) lecithin would achieve the same results?

Feel free to do as you please. I shared what worked for me.

 

[Wishful]

I think you should read Garth Nicolson's story and research.

As a PWME, I don't really feel up to digging through deep research for a simple question. If I did spend hours doing that, would I get a simple answer to the question of whether the body requires a precise ratio of dietary lipids, or does the body adapt reasonably well to a wide variation in ratios?

 

[GlassCannonLife]

Feel free to do as you please. I shared what worked for me.

Thanks, I was just hoping to learn more about why it would be helpful from a fact based perspective rather than their marketing spiel, but all good!

I did find some old threads discussing these same issues though, and it seems like it won't be resolved unless someone studies NTfactor vs lecithin directly in a properly controlled study..

 

[GlassCannonLife]

As a PWME, I don't really feel up to digging through deep research for a simple question. If I did spend hours doing that, would I get a simple answer to the question of whether the body requires a precise ratio of dietary lipids, or does the body adapt reasonably well to a wide variation in ratios?

The studies aren't well designed and do not include a lecithin control, so it seems that there is no way of knowing if it'd be really helpful or not.

There are a few threads from 2009 - 2015 or so that I found on here discussing the same stuff.. Seems like some people gave it a try but generally it caused some issues with methylation blocks (irritability, etc).

Hard to say what it would do long term but I'd be surprised to find that it is superior to good diet (many mixed fruits and vegetables, high quality protein, minimal processed oils), a sunflower lecithin supplement in adequate amounts, and a balanced vitamin E supplement.

The carrier might allow it to penetrate cells better and enter mitochondria but I am not sure about that and haven't looked into it aside from reading their marketing material. Taking the normal approach above, it would still take a few years to slowly exchange lipids and reduce oxidative stress from bad fats in the diet (up to 4 years to replace all IIRC, from a Chris Masterjohn video on vitamin E supplementation).

 

[Learner1]

reduce oxidative stress from bad fats in the diet

There are many more causes of oxidative stress than bad fats in the diet. I've taken high dose vitamin E for the past 4 years and it has not reduced oxidative stress.

If you haven't seen this, you might find it helpful.

 

[GlassCannonLife]

There are many more causes of oxidative stress than bad fats in the diet. I've taken high dose vitamin E for the past 4 years and it has not reduced oxidative stress.

If you haven't seen this, you might find it helpful.

Thanks I'll take a look.

Yes I'm aware of that, but having your cell membranes made up of unstable and vulnerable fats is what I meant more specifically. They are more susceptible to damage by other oxidants rather than a source of oxidative stress (unless you ingest already degraded fats, which would be even worse).

Not sure what you take, but you should make sure that you supplement a balanced amount of the various tocopherol/tocotrienols and don't just use a high dose of alpha-tocopherol as that will dominate the enzymatic transporter and potentially cause you to be deficient in the others. I have posted about this in more detail before, if you're interested I can find a link to that post.