[Case study] CFS/ME remission story severe patient [2008]

[godlovesatrier]

https://www.researchgate.net/profil...atigue-syndrome.pdf?origin=publication_detail

Doctor identified igg3 subclass deficiency and mycoplasma infection with chronic LPS translocation (whereby LPS endotoxins cause IGM reactions and enter the bloodstream due to their presence in the intestine and a degraded intestinal mucosa).

Treatment was 6g immunoglobulin per day for 1 month, then 6g a fortnight thereafter with treatment for defiecincies.

Deficiencies identified in q10, carnitine, and omega's DHA and EPA among others.

Leaky gut treated using gamma oryzano, zinc, NAC and l-glutamine.

Patient gradually improved from severe to mild over a 12 month period, patient had to be encouraged to continue supps, but igg was discontinued at 12 months.

Doctors explanation for why igg probably works:

The exact mechanism of action by which IVIg are of benefit in these immune disorders is only partly
understood. There is now some evidence that IVIg may attenuate cytokine-induced NF6$ production;
inflammation and the production of IFN( and IL-6; may exhibit immunomodulatory effects on T-cell
activation; modulate and promote the immune response; neutralize infectious agents; favour
phagocytosis; and inhibit LPS-stimulated cytokine production [33-37]. Secondly, IVIg contain
antiidiotypic antibodies against human autoantibodies, which may explain its efficacy in treating
autoimmune disorders [38]. Last but not least, IVIg may decrease bacterial translocation beyond the
mesenteric lymph nodes, i.e. IVIg protects the intestinal ecological equilibrium by decreasing bacteria
overgrowth in the intestinal microflora; decreases the number of translocated bacteria; and prevents
bacterial translocation spread [39]

The last part caught my eye.

I found this because I have a lot of LPS bacteria and I now know through testing that when my LPS bacteria were very low, I suddenly had 90% function for the first time in seven years. Now my LPS is back to 60% and the 90% has vanished, but this treatment approach seems sound.

Still sad to see these sorts of stories, from over a decade ago, where the patient was severe and got better and yet the treatment appriach hasn't been tried on anyone since. RemissionBiome are focussing quite heavily on fixing leaky gut before people do their treatment approach.

@Treeman how is your daughter now? Are you improving?

According to one research paper for ME 16% of ME patients have an igg3 subclass deficiency, which is criminal considering how easy it is to test for.

 

[Treeman]

@Treeman how is your daughter now? Are you improving?

Hi. Thanks for asking.

My daughter is much better and we started to see improvements at around 2 months. She is on 7g of cuvitru immunoglobulin weekly. I would say she's around maybe 85%. Still gets fatigued and we try and support her with resting and pacing.

I started to see some improvements at around 3 months. I noticed the persistent and constant shingles area on my neck started to clear. And many other small improvements to all my symptoms eg IBS.

Unfortunately I then caught an infection, which appeared to be mild but lasted for over 2 months. I now think maybe it was COVID again.

I lost most of the gains I achieved but I'm hoping I'll start to improve again. I'm on 7g weekly of cuvitru immunoglobulin.

My immunoglobulin levels (IGg) went from 4.7 to 9.1. When I look around the web many people who have been as Ill as long me take up to a year to see the full results of the treatment. I'm expecting something similar or maybe longer due to on going infections.

 

[godlovesatrier]

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9932260/

Long covid patient recoveries on immunoglobin.

we planned to treat them for 3 months with long-term high-dose immunoglobulin therapy. If there was evidence of benefit at 3 months, the regimen was continued.

The patients’ ages ranged from 34 to 79 years—with five male and four female patients, respectively. All nine patients exhibited significant immune perturbations prior to treatment. One patient declined this treatment, and insurance support was not approved for two others. The other six have been treated, and all have had a significant to remarkable clinical benefit.

 

[godlovesatrier]

@Treeman

Whilst the infection you got the second time is really crap It's amazing to see your response long term and your daughters.

What I really find interesting is your on the exact same dose the doctor used in the above case study. Whilst higher doses may actually be best, lower dosing seems ok too. I mean the cost is still significant if it were private, probably £2000 a month or something like that. But if it's insured or on the NHS in the uk then it's worthit I guess, assuming someone had the funds. If I do decide to do this I am going to have to take slightly lower doses, but as a mild patient I figure I should still see something from that.

Also I would be interested to know if vaccine injury perturbs igg subclasses for those that react badly, but I don't think there are any studies yet for that.

At any rate I hope you continue to improve and recover, also glad you had the MP's help, I haven't a chance where i live.

Good luck.

 

[Tsukareta]

Seems interesting but the fact its from 2008 and not more recent, with no other followup stories with a similar theme is disappointing. That said I have had some results by 'modulating' my immune system with accidental wasp sting and more recently intentionally stinging myself with 'stinging nettle' plants. I also started taking considerably amounts of oregano oil, 2 peptobismol tablets a day ( bismuth subsalicylate ) and some other things specifically targeting sulphate reducing bacteria. I haven't changed my diet. Also take Berberine, L-glutamine ( 500mg to 1000mg ), Quercetin, Resveratrol, Clarityn, minerals especially 'detox regulators' molybdenum. Capryllic acid and other herbs to suppress Candida.

I have seen large improvements but I can't say for sure its due to these interventions, I do have test data that suggests I would benefit from this though. To be honest my bacteria results make no sense and don't correlate well with what i've heard about similar studies in ME/CFS patients. They usually find reduced diversity but my result said the diversity metric was 'good' if not 'great'. The only correlation I see is reduced f.prausnitzii, in general I would say that 30% of my bacteria species / genus are in a state of high to extreme overgrowth, with several completely off the scale, i'm mostly concerned about the ones that produce Hydrogen Sulphide though, a gas which is toxic to mitochrondria, seemingly especially affecting muscles. When my gas levels flare up I become extremely tired and my muscles get unnaturally sore and sensitive, but I don't know what drives these flare ups ( possibly immune system related ? ) I know that stress and anger and other strong negative emotional events can trigger it.

I should mention again that the weird symptoms i've had this year only seemed to start after 2020, which was a very tough and unusual year for me, I had prolonged high stress, antibiotic usage, dirty environment, chemical and airborne bacterial toxins / antigens. Prior to that I had stable moderate CFS and no noticeable stomach issues at all outside of a brief window in 2016 when I was very ill.

 

[godlovesatrier]

There's another study linked here which shows a similair pattern. One year to see full benefit. But severe patients with a near return to work sounds like 70% up from 30 to me

https://forums.phoenixrising.me/threads/what-happens-with-ivig-therapy.78117/post-2238827

 

[godlovesatrier]

Dr Irving spurr formerly UK clinician now retired

https://www.investinme.org/Article-280 THE MYALGIC ENCEPHALOMYELITIS DILEMMA.shtml

A recent report stated that IgG application to activated T cells leads to their decreased ability to engage microglia. As a result of IgG treatment of T cells, the findings showed reduced levels of tumour necrosis factor-alpha and interleukin-10 in T cell-microglia co-culture. The results add to the understanding of how IgG may affect inflammation of the central nervous system in autoimmune inflammatory diseases.

He treated patients with immunoglobulin therapy in the UK for years.

As microglia are a hot topic these days on twitter I quoted the above. But it's an excellent write up which discusses things that most prominent LC and ME researchers have been discussing only in the last three years.

 

[godlovesatrier]

Ivig for Lyme with pandas

https://aspire.care/featured/case-study-pandas-lyme-ivig/

Due to the number of strep infections post infection maybe she did have lowered igg only after Lyme had infected her body and brain. At any rate 12 months of ivig and all symptoms resolved. But patient had abx and wasn't sick for that long compared to most of us.

 

[Guwop2]

But if it's insured or on the NHS in the uk then it's worthit

Are you saying that getting tested for igg3 subclass deficiency and mycoplasma infection with chronic LPS translocation might be available on the NHS? As a UK person, have you looked into this possibility?

 

[godlovesatrier]

People have got subclass testing yes but it was a tough fight and it took them awhile to get it.

As for lps translocation I doubt anyone in the UK when knows what that means. And mycoplasma infection is easy to get just get a test kit from medichecks.com it goes to the Dr labs London so it's legit.

 

[Guwop2]

People have got subclass testing yes but it was a tough fight and it took them awhile to get it.

As for lps translocation I doubt anyone in the UK when knows what that means. And mycoplasma infection is easy to get just get a test kit from medichecks.com it goes to the Dr labs London so it's legit.

Thanks for the information, I wonder what hoops you have to jump through to get subclass..

Did you follow up on this and recieve any immunoglobulin treatment?

 

[godlovesatrier]

I can tell you as I've had to do it.

My Dr was very against me getting subclas testing. Both my private Dr and my GP was a lot less against it. However after much discussion I learnt that I needed a reputable and reliable reason.

My private Dr puts that down to someone who has regular infections like bronchitis or pneumonia that takes a long time to clear and is a regular occurrence. A vaccine challenge is done separately and usually that's after you've got the confirmed low igg. It can become a bit of a chicke and egg situation which makes it super hard.

However my GP was prepared to send off for the tests. However NHS GPs are being told off for doing these tests. Also they can request them but they can't do them only the immunologist can do them and my private Dr worked as an immunologist for 30 years.

So the barriers are very real in the UK. A good history of chronic infections would seem to be vitally important. If you're going to stand much of a chance.

 

[Guwop2]

And mycoplasma infection is easy to get just get a test kit from medichecks.com it goes to the Dr labs London so it's legit.

also, just tried searching for this one on medichecks, but no luck. Perhaps they discontinued the test

 

[godlovesatrier]

That's annoying you could try here

https://www.blood.london/test/mycoplasma-genitalium-ureaplasma-by-pcr/

I did get it so it's prob been discontinued see my result below.

 

[Guwop2]

I can tell you as I've had to do it.

My Dr was very against me getting subclas testing. Both my private Dr and my GP was a lot less against it. However after much discussion I learnt that I needed a reputable and reliable reason.

My private Dr puts that down to someone who has regular infections like bronchitis or pneumonia that takes a long time to clear and is a regular occurrence. A vaccine challenge is done separately and usually that's after you've got the confirmed low igg. It can become a bit of a chicke and egg situation which makes it super hard.

However my GP was prepared to send off for the tests. However NHS GPs are being told off for doing these tests. Also they can request them but they can't do them only the immunologist can do them and my private Dr worked as an immunologist for 30 years.

So the barriers are very real in the UK. A good history of chronic infections would seem to be vitally important. If you're going to stand much of a chance.

hmm, dont think i would be eligible as I rarely get infections these days and my NHS GP is overburdened with work as it is.
Increasingly thinking i need a good private GP, any suggestions as to who i might approach in London (I believe you're in the South East, no?)

 

[godlovesatrier]

You could try an immunologist privately to test you, which will cost a few hundred, but there are some issues getting NHS gp's to accept private tests. So you may hit a dead end, but at least you'd know.

Without the infection tick box I think it is super difficult.

We may just have to wait for antivirals or better ones anyway.

 

[Violeta]

Has anyone tried kefir made from grains? I have read two studies tonight that say that kefir increases IGg, helps heal leaky gut, and can reduce the amount of Gram-negative bacteria in the intestinal lumen, and therefore lower the amount of lipopolysaccharide (LPS).

Here's one study.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9450431/

And another:
https://www.cambridge.org/core/jour...lth-benefits/1393DC2B8E5F08B0BE7BD58F030D387B

 

[lyran]

Has anyone tried kefir made from grains? I have read two studies tonight that say that kefir increases IGg, helps heal leaky gut, and can reduce the amount of Gram-negative bacteria in the intestinal lumen, and therefore lower the amount of lipopolysaccharide (LPS).

Here's one study.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9450431/

And another:
https://www.cambridge.org/core/jour...lth-benefits/1393DC2B8E5F08B0BE7BD58F030D387B

Yes I used to make it. At first it had a calming effect probably because it decresed inflammation in intestines. After some time of using it, I didn't notice anything but I could use it without issues (I can't use probiotics).

It is worth trying.

 

[Blazer95]

The gut microbiome thing is definitly a Thing i Just dont get how its connected to my immune system.

Trigger warning:
When my stool is good color and conistency i usually feel better , when i am worse it smells sour....

 

[hapl808]

Has anyone tried kefir made from grains?

Kefir makes my digestion feel a bit better, but worsens my tachycardia significantly. Have tried multiple types and strains. No effect on my digestive symptoms and reflux during crashes, though.