Dont know what to do next after lot of treatments - every opinion is welcome! CFS/Inflammation

[gbells]

@gbells Please do you have a link to some quality scientific article that would talk about HHV6 masking EBV? I would like to know more about it, EBV is still a big question for me and HHV6 as well. I need to get an IFA test too! Thanks

If you read Lerner's research on treating ME with antivirals he mentions viral reproduction blocking of one virus species by another. I also have direct evidence of this. I was initally positive for EBV on antibody testing but then contracted HHV-6 and became negative for EBV antibodies on all subsequent tests but HHV-6 antibody tests were positive. That is a clear example of viral reproduction blocking.

I think this study by Handous also supports it. His viral antibody testing found HHV-6 in 10% of the patients but EBV in only 3%. EBV and HHV-6 both have a high rate of infection in the population (ubiquitous at around 90%) so they should be comparable rates but instead we see that EBV is decreased by 2/3.

The overall seroprevalences of HHV-(1-6) IgG were high (> 80%). At least one herpes viral agent was detected in 60 patients (63.3%). CMV was the most commonly detected virus in the different phases of chemotherapy (19.4%), followed by HHV-6 (9.7%), HHV-7 (5.2%) and EBV (2.7%). HSV-1/2 and VZV DNA were not detected. Twenty-seven patients (28.4%) had more than one virus detected in the follow-up, with 23 who were co-infected. CMV/HHV-6 was the most frequent co-infection (69.5%, 16/23). HHV-6 infection (p = 0.008) was identified as a risk factor for CMV infection while salvage treatment (p = 0.04) and CMV infection (p = 0.007) were found to be independent risk factors for HHV-6 infection. CMV co-infection was associated with severe lymphopenia with an absolute lymphocyte count (ALC) (< 500/μL) (p = 0.009), rash (p = 0.011), pneumonia (p = 0.016) and opportunistic infections [bacteremia, p < 0.001 and invasive fungal infection, (p = 0.024)] more frequently than CMV mono-viral infections.

-Handous I, Achour B, Marzouk M, Rouis S, Hazgui O, Brini I, Khelif A, Hannachi N, Boukadida J. Co-infections of human herpesviruses (CMV, HHV-6, HHV-7 and EBV) in non-transplant acute leukemia patients undergoing chemotherapy. Virol J. 2020 Mar 17;17(1):37. doi: 10.1186/s12985-020-01302-4. PMID: 32183884; PMCID: PMC7079388.

 

[gbells]

It would be fascinating if scientists could come up gene therapies that could block viral replication of all ME viruses and see if that would cure ME. Unfortunately that is probably around 20 years into the future given the current limitations of gene editing.

 

[Jenc]

Do you verified the result of the Phelix test @aurel @newbie_85 @Jenc @serg1942 ?

I was tested by Quest Lab (US) for b. miyamotoi (acute molecular panel) with negative results.

 

[KateM]

Hey @MartinK I'm really sorry to read about your results. Diet change is what got me out of bed. The protocol I am following is no gluten, dairy, eggs, fats (in meat and oils, though I eat fish). Fat thickens the blood which viruses like. I was desperate and I tried Anthony William, and the results have been remarkable.
I myself am in the U.K. and looking to replicate treatment/approach offered at a place in the US in Charleston, SC called Deeper Healing. I mention in case you find some value in taking a look at them. If you register on their patient portal, which you can do without spending any money, you can take a proper look around at the treatments although a lot of information is on the rest of the website. Besides diet, the other thing which is big for me, is another really basic thing - breath. I am getting results from a breathing program after reading Breath by James Nestor. I highly recommend the book. When I’ve done the breathing program for longer I’ll post about it here. It’s had a tremendous impact on sleep and increased energy.

 

[MartinK]

Hi all,
last two months I did really lot and something little help! Im still bedbound, but able to do 1 - 2 walks around our small house with some pacing. Not more energy, but little bit less fall to PEM! My PEMs are 1-2 days long now (before 5-6 days of really hard PEMs). Now Im able to sleep less than 8 hours without PEM.
But hard to know, what helped most...

This is, what I did:

SOT (supportive oligonucleotide therapy) for EBV - I would very much like to start a discussion about this, because there seems to be no other experience here! I saw this treatment from RGCC Group from Greece in some FB goups and some Lyme forums.
SOT is without side effects looks like and I know some patients with good results for Lyme/Viruses
https://imcwc.com/html5-blank/supportive-oligonucleotide-technique/

Joshua Leisk Protocol - I do this protocol for a 1,5 month now, looks like Im really close to target doses. Fact is, I dont have a massive crash/PEM as a Joshua say in first weeks, only now I feel some more inflammation and less energy...it fluctuates a bit, it is not as significant as someone else described...like @godlovesatrier
Last week I started also Spironolactone with this protocol. HERE is thread for info gathering about this drug and Im in contect with person who did last study.

Benzo - I suspect that my improvement may also make this drug that I don't want to take, but I had to sleep for over 2 months due to massive insomnia. Im only on 0.25 mg of Alprazolam, but fact is, my improovement started after 2 weeks on this drug. Does anyone have an idea what is worth verifying if benzo really works? Can this point to trying other drugs (not psychiatric drugs, I think maybe mcas medication, because know some peoples with MCAS had benefits from Benzos (But I dont have a MCAS))?

By the way - this I found last week on my hand... VZV shingles or not? What do you think?

(I have high VZV antibodies for a long time, and positive LTT test...if VZV is chronic/latent Acyclovir works best?)

cheers, Martin

 

[godlovesatrier]

Just as an aside Martin. This week I increased beta glucan intake to 1400mg from 400mg and I've witnessed a remergence of summer bumps on my fingers. This time however there's so far only one bump! Directly on the side of the finger. Semi transparent. Doesn't itchy. It's not red and I've self diagnosed it as summer bumps via Google to be clear. (I didn't make this very clear, I had summer bumps all over my fingers the first time I increased the glucan intake to max which was about 2-3 months into the protocol, so it's not a co-incidence that increased glucan intake causes some sort of reactivation or awakening of older infections.)

It's not hot in the UK anymore so it can't be heat related and I haven't been sunbathing. Also I'm not stressed. So I'm pretty confident that high glucan intake in my case causes these bumps to appear. Why is anyone's guess. But as per your rash thought you might be interested.

I've also had very itchy piles since the increase too. I've had lots of issues in that area which is nothing to do with a lack of fibre and doctors have been completely useless. Suffice to say I wonder what that could be about. Scar tissue. Allergies...I don't know but again it's only occured which high glucan intake.

The protocol gets very mixed results from everyone it seems. Just me and bright candle who've had the most success. I think @Calluna has also had some success...not sure.

Good luck with it, at max doses you should start to see the best maximum effect. I'll be glad when the immune response is over. A few more weeks for me to go yet I think.

 

[5vforest]

Hey Martin, thanks so much for updating us.

I would definitely consider SOT for myself if there was more information on it. To be honest, I was pretty turned off by the fact that Marty Ross was not able to get a response here: https://www.treatlyme.net/guide/sot-lyme-treatment

I don't have anything insightful to share, just that I am grateful that you updated us and I am happy for you that you have had some improvement.

 

[MartinK]

This is my last VZV testing early this year:

VZV IgA 0.06 IP (0.00 - 0.90)
VZV IgG 3.87 >> IP (0.00 - 0.90)
VZV IgM 0.10 IP (0.00 - 0.90)

What do you think? Can you compare with yours?

@godlovesatrier : summer bumps? do you mean dishydrosis (I know this word)? I have dishydrosis on my fingers few times every year. I also think it may be some reactivation, and if I know right, dishydrosis is also common in persons with allergy and stress.
However, I have come to the conclusion that this is not sufficiently researched and explained.

Thank you and Im also interested, what @Calluna do ;-)

@5vforest : heyyy...good article from Marty! I wish this method was more explored and there were more answers. I have found that it also offers some dubious medical facilities, but where I have undergone it, there is a relatively highly respected clinic. I really recommended FB SOT groups - there are interesting discussions.

I also had a Skype consultation with one of very respected EU Lyme expert and he told me, he was on many conferences, where the SOT was evaluated by several LLMD or physicians as very successful for some of their patients. I think one is Louis Teulieres.

 

[5vforest]

@5vforest : heyyy...good article from Marty! I wish this method was more explored and there were more answers. I have found that it also offers some dubious medical facilities, but where I have undergone it, there is a relatively highly respected clinic. I really recommended FB SOT groups - there are interesting discussions.

Can you link me to one of the groups that you recommend? Feel free to PM. I tried searching but did not find any ones that were active.

 

[godlovesatrier]

@godlovesatrier : summer bumps? do you mean dishydrosis (I know this word)? I have dishydrosis on my fingers few times every year. I also think it may be some reactivation, and if I know right, dishydrosis is also common in persons with allergy and stress.
However, I have come to the conclusion that this is not sufficiently researched and explained.

Yes so they do look like dishydrosis. But they also look like coxsackie a bumps (in infants) I had an armin positive test for coxsackie A, which makes me think that I maybe once had it as a kid. Suffice to say these summer bumps could just be dormant coxsackie A - assuming that's even possible. Who knows, as you said it's not a very well researched area. I've got 3, one on my writst, one on my finger, one on the underside of my finger. I remember a kid at school who was 10 years old who had them all over his hands all the time. Definitely isn't caused by stress, I wouldn't say it's allergies but for all I know it could be an allergic reaction to something on the protocol that I take? Not sure.

Hopefully @Calluna will give us a little run down

 

[MartinK]

Hey hey @Martin aka paused||M.E. inspired me in his new thread "Atypical ME/CFS" for writing some lab tests results, maybe we found some interesting, maybe some connections...identifications... maybe someone find something interesting!

B_WBC 3.77 << 10^9/l (4.00 - 10.00)
B_RBC 5.00 10^12/l (4.00 - 5.80)
B_HGB 161 g/l (135 - 175)
B_HCT 0.460 l/l (0.400 - 0.500)
B_MCV 92.0 fl (82.0 - 98.0)
B_MCH 32.2 pg (28.0 - 34.0)
B_MCHC 350 g/l (320 - 360)
B_RDW 12.2 % (10.0 - 15.2)
B_PLT 164 10^9/l (150 - 400)
B_MPV 12.7 >> fl (7.8 - 11.0)
B_PDW [fl] 17.6 >> fl (9.0 - 17.0)
B_PCT 0.21 % (0.12 - 0.35)
Neutrofily 57.5 % (45.0 - 70.0)
Nezralé granulocyty 0.3 % (0.0 - 0.5)
Lymfocyty 30.5 % (20.0 - 40.0)
Monocyty 8.5 % (2.0 - 12.0)
Eozinofily 2.4 % (0.0 - 5.0)
Bazofily 1.1 >> % (0.0 - 1.0)
Neutrofily-abs 2.17 10^9/l (2.00 - 7.00)
Nezrolé granulocyty abs. 0.01 10^9/l (0.00 - 0.03)
Lymfocyty -abs 1.15 10^9/l (0.80 - 4.00)
Monocyty -abs 0.32 10^9/l (0.08 - 1.20)
Eozinofily-abs 0.09 10^9/l (0.00 - 1.10)
Bazofily -abs 0.04 10^9/l (0.00 - 0.20)
*small leukopenia looks like for some time!

B_Leukocyty [WBC] 3.9 << 10^9/l (4.0 - 10.0)
B_Hemoglobin [HGB] 169 g/l (135 - 175)
B_Hematokrit [HCT] 0.482 1 (0.400 - 0.500)
B_Erytrocyty [RBC] 5.13 10^12/l (4.00 - 5.80)
B_Střed.obj.erytr. [MCV] 94.0 fl (82.0 - 98.0)
B_Barvivo erytr. [MCH] 33 pg (28 - 34)
B_Stř.barev.kon. [MCHC] 351 g/l (320 - 360)
B_RDW-CV 0.123 1 (0.100 - 0.152)
B_Trombocyty [PLT] 166 10^9/l (150 - 400)
B_Neutrofily - abs.počet 2.15 10^9/l (2.00 - 7.00)
B_Lymfocyty - abs.počet 1.26 10^9/l (0.80 - 4.00)
B_Monocyty - abs.počet 0.35 10^9/l (0.08 - 1.20)
B_Eozinofily - abs.počet 0.10 10^9/l (0.00 - 0.50)
B_Bazofily - abs.počet 0.03 10^9/l (0.00 - 0.20)
B_Neutrofily - relativně 0.552 1 (0.450 - 0.700)
B_Lymfocyty - relativně 0.324 1 (0.200 - 0.450)
B_Monocyty - relativně 0.090 1 (0.020 - 0.120)
B_Eozinofily - relativně 0.026 1 (0.000 - 0.050)
B_Bazofily - relativně 0.008 1 (0.000 - 0.020)
(sorry for some Czech words, I hope its easy to read in EN )

CD57+ 10^9/l (0.00 - 5.00) NK cells OK, function OK (my NK was low, after Disulfiram for Lyme normal!)

Th1/Th2 balance - switched in Th1, but loooow IFN-gamma

EBNA IgG 12.56 >> S/CO (0.00 - 0.50)
EBV VCA IgG 67.30 >> S/CO (0.00 - 0.75)
EBV VCA IgM 0.05 S/CO (0.00 - 0.50)
EBV EA IgG <5 U/mL (0 - 40)
(this is my only positive IgG due Montoya criteria, LTT low positive, PCR negative)

CMV IgG 3.20 AU/mL (0.00 - 6.00)
CMV IgM 0.15 S/CO (0.00 - 0.85)

Bordetella pertussis IgG 49.30 >> IU/ml (0.00 - 40.00)

HHV6 - human herpes virus 6 2.57 >> arb.j. (0.00 - 1.00) (ELISA)
HHV6 - IFA IgG positive in 1:40, IgM negative

VZV IgA 0.06 IP (0.00 - 0.90)
VZV IgG 3.87 >> IP (0.00 - 0.90)
VZV IgM 0.10 IP (0.00 - 0.90)

Enteroviruses:
E6 - 128 titer
E7 - 16 titer
CVB2 - 4
CVB3 - 16
CVB - 4

Borrelia IgG 9.73 AU/ml (0.00 - 10.00)
(tested x times with LTT, Phelix Phage... after Disulfiram is all negative, only Phelix Miyamotoi positive, but not sure if Phelix is 100% quality... LTT Miyamotoi is negative)

Helicobacter pylori IgA 0.24 IP (0.00 - 0.90)
Helicobacter pylori IgG 1.97 >> IP (0.00 - 0.90)
(treated in past, long time negative, only now positive IgG

ASCA IgA 5.80 U/ml (0.00 - 10.00)
ASCA IgG 52.50 >> U/ml (0.00 - 10.00)
(I really dont have Crohns or UC... some specialists say its not a problem, if I had not digestive issues)

Chlamydia pneumoniae IgG 3.16 >> IP (0.00 - 0.90)
Chlamydia pneumoniae IgM 0.12 IP (0.00 - 0.90)
(LTT and 2 more tests are completely negative)

Mycoplasma IgA 0.13 IP (0.00 - 0.90)
Mycoplasma IgG 0.90 IP (0.00 - 0.90) border
Mycoplasma IgM 0.69 IP (0.00 - 0.90)

Bartonella -both strains negative blot + LTT

Parvovirus B19 - IgG + IgM negative

Yersinia - treated, now negative

Leptospirosis - all strains negative

Toxoplasma - negative

Laktat (normal)/Pyruvat(low) - ratio LOW

Creatinine - high 22,9 (0,7 - 15)

Carnitine free OK
Carnitine whole - OK
Carnitine acylated - LOW
Carnitine ratio - LOW

CoQ10 - one test low, one high - hard to say!

All tested Amino Acids Urine + Blood - OK, in range

Eosinophil protein X - VERY HIGH 891 (0 -360)

Kynurenic Acid - HIGH 4,44 (0.85 - 1.24)

PGE-2 - HIGH 3.33 (0.3 - 2)

MIP1-beta 29 (0 - 155)

alltested cytokines in range, only IL-8 in one lab very little high

I-FABP - normal

VEGF - normal

Zonulin - in past high, after gut treatment in range

Cortisol - low in morning

Antioxidant capacity and Glutation look good

Intracellular ATP - normal

Tryptase, Leukotrienes, Histamine - normal

vitamin D - 144n/mol

vitamin B12 - on high border

Selenium - high

Zinc, Iron, Copper, Magnesium in some test low
other mineral tests:
Sodium 140 mmol / L (137 - 146)
Potassium 4.1 mmol / l (3.8 - 5.0)
Chlorides 104 mmol / l (97 - 108)
Calcium 2.34 mmol / L (2.10 - 2.55)
Phosphorus for 0.84 mmol / L (0.65 - 1.61)
Magnesium 0.80 mmol / L (0.66 - 0.91)
Iron 18.1 μmol / L (7.2 - 29.0)

thyroid tests normal

head 3T MRI normal

lactose intollerace, some food intollerance, pollen allergy

physical - scoliosis and hyperhkyposis

Thanks all who have some time to read maybe @sometexan84 @godlovesatrier @Hip some good points?

 

[godlovesatrier]

Well your vitamin D and immune markers are better than mine. My vit d is 77 and my neutrophils are 1.7 and be rest of my immune cells are just above the lowest range. They've dipped a lot since I got my second covid jab. Like you my serum b12 is so high it's not actually in range of the test.

On the whole I'd say most of these don't look too dissimilar to others I've seen on PR. But I'm only commenting on the mineral and whole blood counts etc. I'm not sure of your titer ranges or the types of tests you got for the viral and entereoviral tests so can't comment on those. But I'm sure someone else will be able to help

Hips roadmap is brilliant for looking up titer examples for most of the tests you have by the way.

 

[Martin aka paused||M.E.]

Th1/Th2 balance - switched in Th1, but loooow IFN-gamma

How can you have a TH1 shift with low IFNg? Sounds more like TH2 (my IFNg is very low too, hints to chronic inflammation.)

(this is my only positive IgG due Montoya criteria, LTT low positive, PCR negative)

IGG seem to be quite high

Laktat (normal)/Pyruvat(low) - ratio LOW

same here

Creatinine - high 22,9 (0,7 - 15)

that's kind of atypical

Eosinophil protein X - VERY HIGH 891 (0 -360)

I don't even know what that has to say tbh

Kynurenic Acid - HIGH 4,44 (0.85 - 1.24)

not good... Could lead to neurotoxicity

Selenium - high

Doo you supplement ?

Magnesium in some test low

I would supplement mag

 

[bensmith]

Maybe try maraviroc.

 

[MartinK]

@Martin aka paused||M.E. hey, thanks for point! some same things are here looks like!

How can you have a TH1 shift with low IFNg? Sounds more like TH2 (my IFNg is very low too, hints to chronic inflammation.)

this is laboratory explanation:
"The stimulated Release of cytokines T-lymphocytes shows a diminished IFN-g (TH1 content) what on a reduced one cellular Immune competence or decompensation in the frame one chronic inflammatory events. The TH2 response (IL-4) lies in theNormal range. The reduced TH1 / TH2 ratio is here Not through a TH2 shift, rather"

IGG seem to be quite high

yes, this is correct, but hard to know what really EBV do now... I checked what Lerner and Montoya say...and what is in @Hip roadmap:

"Epstein-Barr virus antibodies. Dr Martin Lerner says ME/CFS patients have an active EBV infection if there are high antibody levels in the VCA IgM and/or EA IgG diffuse tests.

Prof Jose Montoya has his own criteria based on high EBV VCA IgG and EBV EA IgG, but simultaneously required high HHV-6 IgG."

correct reading has many pitfalls for viruses, it seems :-/

high Creatinine - yes, really need to find some info, what this mean, same Eosinophil protein X and KYNA... I think it may indicate a large part of my feelings of severe inflammation, but in a few years I haven't figured out how to put it all together...and why it happens, what is a trigger...:-/

Selenium - supplemented in past, now go for retest

Magnesium - just started Magnesium N-Acetyltaurinate
https://pubmed.ncbi.nlm.nih.gov/33593714/

@bensmith Ohh, need to know this drug....you have good effects from Maraviroc? I sawit first time in some text about long covid!

 

[Martin aka paused||M.E.]

in the frame one chronic inflammatory events.

The a also what I assume. There is no shift.

"Epstein-Barr virus antibodies. Dr Martin Lerner says ME/CFS patients have an active EBV infection if there are high antibody levels in the VCA IgM and/or EA IgG diffuse tests.

Prof Jose Montoya has his own criteria based on high EBV VCA IgG and EBV EA IgG, but simultaneously required high HHV-6 IgG."

It's a complicated field. Reactivation might be possible.

high Creatinine - yes, really need to find some info

Have you checked your kidneys recently?

KYNA

Hints to a disturbed KYN Metabolism... KAT metabolites kynurenine to KYN-acid. It's an NMDA antagonist and anti-inflammatory... Would be good to know your KYN levels (and Quinolinic acid levels) bec it's often a response to high KYN (which is inflammatory)/ an inflammatory process.

just started Magnesium N-Acetyltaurinate

Very good choice.

Maraviroc

It's a CCL5 (RANTES) inhibitor... Might be interesting for you is you have elevated levels. I'm not sure yet if it's useful if you don't... Asked Bruce Patterson but no answer yet

 

[MartinK]

Hey @Martin aka paused||M.E. thank you!
I checked two more Creatinine results (one older, one new from last kidney tests due to Spironolactone) and looks good...very normal. Only this one was elevated. Oh...I was relieved

KYNA - yeah, just checked testing from KDM, he did a lot test and also Quinolinic acid - its LOW! 0.61 (0,75 - 1,16) ...how looks yours?
Will retest KYNA definitely! Looks like its in Lab4more where I want to do testing. Also find Tryptophan-Kynurenine Ratio...interesting.

It's a CCL5 (RANTES) inhibitor

Oooh, looks like I forget to test RANTES in IMD last time :-/ Will do it in Lab4more!
Thank you ;-)

 

[bensmith]

@Martin aka paused||M.E. hey, thanks for point! some same things are here looks like!



this is laboratory explanation:
"The stimulated Release of cytokines T-lymphocytes shows a diminished IFN-g (TH1 content) what on a reduced one cellular Immune competence or decompensation in the frame one chronic inflammatory events. The TH2 response (IL-4) lies in theNormal range. The reduced TH1 / TH2 ratio is here Not through a TH2 shift, rather"



yes, this is correct, but hard to know what really EBV do now... I checked what Lerner and Montoya say...and what is in @Hip roadmap:

"Epstein-Barr virus antibodies. Dr Martin Lerner says ME/CFS patients have an active EBV infection if there are high antibody levels in the VCA IgM and/or EA IgG diffuse tests.

Prof Jose Montoya has his own criteria based on high EBV VCA IgG and EBV EA IgG, but simultaneously required high HHV-6 IgG."

correct reading has many pitfalls for viruses, it seems :-/

high Creatinine - yes, really need to find some info, what this mean, same Eosinophil protein X and KYNA... I think it may indicate a large part of my feelings of severe inflammation, but in a few years I haven't figured out how to put it all together...and why it happens, what is a trigger...:-/

Selenium - supplemented in past, now go for retest

Magnesium - just started Magnesium N-Acetyltaurinate
https://pubmed.ncbi.nlm.nih.gov/33593714/

@bensmith Ohh, need to know this drug....you have good effects from Maraviroc? I sawit first time in some text about long covid!

havent tried maraviroc myself yet. I hear it can be a hard start and im debating as i’m not as well as i once was.

not everybody has a hard start, but yeah. I prob will do it im the coming weeks.

 

[dyllanmurphy]

If you had confirmed Lyme as a kid (bullseye rash), try disulfiram under the care of a doctor.

 

[MartinK]

@dyllanmurphy hey dyllan, I did 2 Disulfiram treatments...now Lyme looks clear on LTT tests ;-) - all strains.