How to get ridd off this immunologic stuff?

[Hd-x]

I guess the right english word for "segmentkernige" is "segmented neutrophils"
They used photomicrograph of a blood film to detect the toxic granulation, it seems to be this: https://www.sciencedirect.com/topics/medicine-and-dentistry/toxic-granulation
https://en.wikipedia.org/wiki/Toxic_granulation

They ruled out cancer, leukemia, Hodgkins, pheochromocytoma and so on,
checked the urine and bowel for any infections and found nothing there. Just the urine ph was low 4,2 and not much adrenaline in my urine. They checked liver and other organs.
They have no explanation for the low CD8 count, toxic granula, swollen lymph nor weight loss.
It was the oncology that investigated my case and since they have not found any cancer they simply closed my case,
thats Germany.

Did they do PCR (DNA) test for EBV and alm the other infections? Or just antibodies?

As far as I remember just antibodies. Bloodwork was still for common virus stuff like HIV, CMV, EBV, Hepatitis.
the oncology have not known about the Pridgen study and things like HSV1 Fibromyalgia crosslink,
my HSV IgG AK is 1:46000 - seems pretty high, imo.

Grest news thst you don't have cancer or HIV!

I am really happy that I dont have cancer.
HIV vs CFS, hmmmm I am not sure what is more worst, with HIV I would have a therapy,
with CFS chances are not that great in my country, do you see this google map:
https://www.google.com/maps/d/viewer?mid=1M-E5tB-tla8lV3bPjT3PaMkxgn0&ll=49.46081863035088,12.300295643869276&z=5
There are over 300 000 CFS sufferers in Germany but still 2CFS doctors,
Prof Scheibenbogen from Charite Berlin but they still accept CFS sufferers from Berlin and not anymore from outside. The other one is Dr. Bieger, you need to pay him - if you dont have much money, you cant afford such doctors.

 

[Sidny]

As far as I remember just antibodies. Bloodwork was still for common virus stuff like HIV, CMV, EBV, Hepatitis.
the oncology have not known about the Pridgen study and things like HSV1 Fibromyalgia crosslink,
my HSV IgG AK is 1:46000 - seems pretty high, imo.

In my opinion I wouldn’t overlook HSV as driving a lot of your illness. A nasty primary infection with that virus triggered encephalitis in me. A primary HSV infection also triggered a well known members illness on this forum as well. (RIP @SK2018 )

Doctors probably down play the virus because there’s literally nothing they can do about it (besides valtrex)

You mentioned valtrex not improving your symptoms if I understood correctly, how long were you on it for?

Then of course there’s the topic of enteroviruses which are known triggers in ME like illnesses that there isn’t much good testing for or treatments for that matter.

 

[Hd-x]

Valtrex helped me and improved some symptoms, but the doctor still prescribed it just for a few weeks.
I have meanwhile a new doctor and will ask him, if he would prescribe Valtrex longer.

What has happen with @SK2018 ??

 

[Learner1]

I agree. HSVs can definitely strive your symptoms and that result seems quite high.

I was on Valtrex and then was switched to Valcyte when my unsurance wouldn't approve a 3g dose and I had a positive EBV PCR. You might push for a PCR for EBV - my case wasnt found with viral titers alonem

I was on Valcyte for 2 years, until After I'd had 4 negative EBV PCR tests and had been on IVIG for 18 months. These viruses never go away - they wait around for your immune system to be weak and then slowly do their damage, in many cases, triggering autoimmunity, like the CellTrend antibodies and others.

@SK2018 sadly passed away, undertreated in a German hospital, from autoimmune encephalitis triggered by HSV1 infection. It is a tragedy and should be shared by patients in Germany so doctors undetstand how serious the consequences of these viral infections can be. You can find more here:

https://ca.gofundme.com/f/72ob61c

 

[Hd-x]

Im so sorry,
this is such a sad and unbelievable horrible story, as far as I understand he died because off a CSF leak -why has this not been treaten? I never thought that in the UK such things are possible, I always thought CFS/ME sufferers in UK/USA would all have great doctors + hospitals, but it seems the situation is wordwide worst and ignorance everywhere.

I agree. HSVs can definitely strive your symptoms and that result seems quite high.
I was on Valtrex and then was switched to Valcyte when my unsurance wouldn't approve a 3g dose and I had a positive EBV PCR. You might push for a PCR for EBV - my case wasnt found with viral titers alonem

the doctor will be in vacation for 4weeks,
I need somehow to bridge Valtrex pills, will try some supps to get off from the TH2 shift.
will also boost my FE, Cu, Selen, Vitamin C levels
Do you think Immunovir would be any good? As far as I know it will increase CD4 cell count - would it even more imbalance my CD4/CD8 ratio, or I am thinking wrong?

 

[Learner1]

Im so sorry,
this is such a sad and unbelievable horrible story, as far as I understand he died because off a CSF leak -why has this not been treaten? I never thought that in the UK such things are possible, I always thought CFS/ME sufferers in UK/USA would all have great doctors + hospitals, but it seems the situation is wordwide worst and ignorance everywhere.

We are all very sad. From what I have read died, not in the UK whete he had trouble getting treatment, but in a German hospital where they didn't really treat him, from complications from autoimmune encephalitis caused by NMDA antibodies triggered by HSV1.

the doctor will be in vacation for 4weeks,
I need somehow to bridge Valtrex pills, will try some supps to get off from the TH2 shift.
will also boost my FE, Cu, Selen, Vitamin C levels

Make sure you need the metals, as too much can be harmful and cause symptoms, just as too little can.

Do you think Immunovir would be any good? As far as I know it will increase CD4 cell count - would it even more imbalance my CD4/CD8 ratio, or I am thinking wrong?

From the discussion we are having around McGregors's recent PEM paper, online is the step before hypoxanthine which gets depleted in PEM.

I would think it would best to figure out what's driving your CD4/CD8 and Th2 and solve that. Adding more gas to a broken system might have unintended consequences. It I am not a doctor...

Best wishes...

 

[Hd-x]

Imo, it didnt make sense to waste further $$$ for blood tests. I also withdrawn the Imunovir idea, have read something fishy on a HIV board about it .
My TH1 is increased and TH2, but with a clear Th2 dominance like most FM/CFS sufferers.Selen helps T lymphocytes to do better their work , Vitamin C as scavanger + copper for sod2 polimorphism and some other things.

TH2 dominance is a risk factor for low CD8 cell count and getting ridd off this th2 shit may be the way to go.
Candida (killed) and MCAS for sure major reasons for my TH2 shift, Histamine, even Serotonin promotes TH2 shifts.
What I wanna try is to have medications that work both for my MCAS + CFS, because doing so means less pills and less pills, less side effects
The dual H1 Antihistaminka/Serotonin Antagonist Cyproheptadin + Xanax + adding Ashawanghda KSM seems to be a good choice,
- the MCAS therapy weak part the PPI, because it didnt do anything for CFS it just reduces acid.
There are old H2 blockers out there with some antiviral (side effect) properties, depending on the dosage able to increase Cd4+Cd8 cell count + decreasing IL8; interestingly some odd H2 blockers seem to be P450 inhibitor thus )increasing plasma levels of other drugs bypassing the same enzyme way.
Pulsing 21days (on/off) a H2 blocker instead off PPI would perhaps fix some viral and immune problems without taking all the time any virustatika and trying any immune modulators with partly unknown effects.
I need to investigate these H2 drug topic closer,

 

[Learner1]

My 5 viral infections didn't respind to natural treatments (ozone, high dose vitamin C, artesunate/artemisinin, berberine, etc.). Valcyte (valganciclovir) made a difference in 30 days.

My TH1 is increased and TH2, but with a clear Th2 dominance like most FM/CFS sufferers.

I'm not sure this is the case. I have MCAS as well and am Th1 dominant. My IL8 doesn't need to decrease - does yours?

MCAS is for sure one major reason for my TH2 shift and will check out if there are smarter ways to treat MCAS + CFS together.

I have MCAS, which my ME/CFS specialist thinks is autoimmune. Curcumin, quercetin, cromolyn sodium, fexofenadine, ketotifen and ranitidine have all been helpful.

Dealing with infections, boosting IgG, reducing oxidative and nitrosative stress, supporting ATP production, and supporting nutrition and hormones have helped the ME/CFS.

Selen increases the ability of T lymphocytes to do better their work ,

Selenium also supports thyroid conversion and glutathione production, among many other things. Too much can mimic radiation poisoning symptoms.

Vitamin C+ copper helps for sod2 polimorphism and some other things immune things.

Manganese helps SOD in mitochondria as Mn-SOD, Cu-SOD is used outside of mitos. Mitos create a lot of ROS, and MN-SOD can be helpful in reducing it. If not enough is produced, peroxynitrites can form, damaging cell membranes and impairing complex I. Glutathione can counter the peroxynitrites, and vitamin C helps to recycle glutathione, but focusing on increasing glutathione is a higher priority.

 

[Hd-x]

the Polimorphism needs also good Cu/Zn balance, as SOD scavanger can be used Gingko, ALA, Vitamin C (ONOO, too). Also B Vitamins (B1, B6, B12) D-Ribose, D-Galaktose, a-Ketogluterat (NH3 inhibitor), Creatine phosphat.
Usually carbs with high GI shoiuld be avoided..

I'm not sure this is the case. I have MCAS as well and am Th1 dominant. My IL8 doesn't need to decrease - does yours?

How long are you on MCAS therapy? If you are TH1 dominant it may be a sign that yours MCAS therapy is working fine, imo. My levels bevor MCAS therapy (dont have any after blood work):
TH1 Ref 374-1660 ---- 2470pg/ml
Th2 Ref 28-141 ------ 675pg/ml
IL 8 Ref <15 ----- 21.4pg/ml

I guess, high IL8 isnt that good -or?
The somewhat high TH1 indicate imo somehow the immune system is active and not fully shut down.
I guess if TH1 would be very low and Th2 high that such a combination would be more worst.

Too much can mimic radiation poisoning symptoms.

The NOAEL (No Observed Adverse Effect Level) is 850 µg.
I am fine with 200 µg. Copper is something more concerning , dont get ridd off my copper deficiency even if I take Coppergluconate.

I have MCAS, which my ME/CFS specialist thinks is autoimmune. Curcumin, quercetin, cromolyn sodium, fexofenadine, ketotifen and ranitidine have all been helpful.

My previous doctor prescribed nearly the same;
I was getting lot off stomach problems from Fexofenadine, and Ketotifen triggered nervours behaviour, heart burn. No side effects so far from cromolyn sodium, but it didnt do much for me.-
It is interesting we both have MCAS and totally different drug classes work for each off us.
Obvisously, it has something to do what kind off mediators the MCAS released.. I guess, I have more trouble with any neurotransmitter release from mastcells which may explain why I am doing well under dual H1 Serotonin Antagonistic and CNS damping drugs.
As far as I know there are 50+ MCAS mediators, cytotoxine.

 

[Learner1]

the Polimorphism needs also good Cu/Zn balance,

Everyone needs a good Cu/An balance. Important for mental health, immune system function, etc.

as SOD scavanger can be used Gingko, ALA, Vitamin C (ONOO, too). Also B Vitamins (B1, B6, B12) D-Ribose, D-Galaktose, a-Ketogluterat (NH3 inhibitor), Creatine phosphat.

High mitochondrial production of superoxide with inadequate SOD production promotes peroxynitrite production, a known feature of ME/CFS. This is more likely in folks who don't recycle BH4 well. Peroxynitrites impair complex I and damage mito membranes. B vitamins, C, and glutathione can help reduce peroxynitrites, while phospholipids like those in NT Factor can help to repair membranes . See attached.

How long are you on MCAS therapy?

2 years, though I was prescribed MCAS meds as long as 12 years ago without the diagnosis.

If you are TH1 dominant it may be a sign that yours MCAS therapy is working fine, imo.

No, my doctors' interpretations are that it means I have significant autoimmunity, which I do.

My levels bevor MCAS therapy (dont have any after blood work):
TH1 Ref 374-1660 ---- 2470pg/ml
Th2 Ref 28-141 ------ 675pg/ml
IL 8 Ref <15 ----- 21.4pg/ml

I guess, high IL8 isnt that good -or?
The somewhat high TH1 indicate imo somehow the immune system is active and not fully shut down.
I guess if TH1 would be very low and Th2 high that such a combination would be more worst.

Can you provide some info on what the lab is actually testing for Th1/Th2?

Yes, high Th1 means your immune sysyem is very active. Typically, high Th1 is related to autoimmunity. High Th2 is related to infection. Ideally one should be in normal range for both snd balanced between the two.

No, high IL-8 isn't good - from Wikipedia:

Interleukin-8 is a key mediator associated with inflammation where it plays a key role in neutrophil recruitment and neutrophil degranulation.[11] As an example, it has been cited as a proinflammatory mediator in gingivitis[12] and psoriasis.

Interleukin-8 secretion is increased by oxidant stress, which thereby cause the recruitment of inflammatory cells and induces a further increase in oxidant stress mediators, making it a key parameter in localized inflammation.[13] IL-8 was shown to be associated with obesity.[14]

IL-8 has also been implied to have a role in colorectal cancer by acting as an autocrinegrowth factor for colon carcinoma cell lines[15] or the promotion of division and possible migration by cleaving metalloproteinase molecules.[16]
...

Did you have other cytokines measured? Like IL-1B, IL-6, IL-12, IL-17, IFN-g, TFN-a or b?

The NOAEL (No Observed Adverse Effect Level) is 850 µg.
I am fine with 200 µg.

Thats a reasonable selenium dose.

Copper is something more concerning , dont get rid off my copper deficiency even if I take Copper gluconate.

How are you measuring copper? I've found a discrepancy between results of various copper tests - some look high and some look low... Do you have copper deficiency symptoms? Take a lot of zinc? Have an iron problem?

My previous doctor prescribed nearly the same;
I was getting lot off stomach problems from Fexofenadine, and Ketotifen triggered nervours behaviour, heart burn. No side effects so far from cromolyn sodium, but it didnt do much for me.-
It is interesting we both have MCAS and totally different drug classes work for each off us.
Obvisously, it has something to do what kind off mediators the MCAS released.. I guess,

Or, which ones are getting set off, by what triggers, and what is being released. As well as our ability to deal with them. My MCAS problems have been lessened by increasing acetyl CoA with C and B5, and kerping methylation moving with nutrient support.

See attached.

I have more trouble with any neurotransmitter release from mastcells which may explain why I am doing well under dual H1 Serotonin Antagonistic and CNS damping drugs.
As far as I know there are 50+ MCAS mediators, cytotoxine.

Many CNS drugs deplete B vitamins, especially folate, exacerbating mast cell problems. You might Google "drugname nutrient deficiency" or "drugname nutrient depletion."

 

[Hd-x]

I had few years ago several nutrient deficiency;
Ca, P => low Vitamin D related
B12, Fe, Cu => long term PPI related
Still B12 was low
all the other B vitamins were fine.

No, my doctors' interpretations are that it means I have significant autoimmunity, which I do.

Yep, still a moderat TH1 shift may help under some cirumstandings,
if it is too high it indicates autoimmunity disease.

How are you measuring copper? I've found a discrepancy between results of various copper tests - some look high and some look low... Do you have copper deficiency symptoms?

It was a lysed (EDTA?) whole blood analysis, I am not sure if this is serious and evidence based lab test. Copper deficiency,
means weak immune systeme, less energy, fatigue and so on.
We all have this, I dont think copper will fix it, but proper levels may perhaps improve few things.

Did you have other cytokines measured? Like IL-1B, IL-6, IL-12, IL-17, IFN-g, TFN-a or b?

Bloodwork (5 month ago)
IFN-G (Th1)---- increased +
IL4 (Th2) .........increased ++
Tnf-a ------ fine
IL 1ß -------fine
IL6 -----------fine
IL8 ----------increased ++
IL10 ---------fine
Immunglobulin G1------ fine
Immunglobulin G2------ increased ++
Immunglobulin G3------ fine
Immunglobulin G4 ------ fine
IgG ............fine
IgM ............fine
IgA ............fine
IgE ............fine
IP 10 --------fine
Zonulin-----increased +
Histamine---fine
DAO---------increased +
Tryptase ----increased +
Leukotrine--increased ++
TGF-ß-------increased ++
VEGF ..........fine
Cd8+.-------decreased --
CD31+-----decreased -
B cells ------increased +
______________________________
+ = moderat
++ = high

Interestingly my Histamine was okay + high DAO
the previous doctor want to sold expensive DAO pills, lmao.

Can you provide some info on what the lab is actually testing for Th1/Th2?

I dont have any new immune system bloodworks,
It didnt make any sense to pay lab tests if German doctors can not read such things
They dont know anything about FMS, CFS, MCAS - the situation is just like this:

 

[Learner1]

Looks like you have a real illness, not a medically unexplained one.

Loss of CD31 function is associated with excessive immunoreactivity and susceptibility to cytotoxic killing. Several other markers above look like they are linked to hyper immune response, aka autoimmunity. And MCAS, which can be autoimmune.

High TGF-b can be due to EBV, among several other reasons.

I wouldn't rely on several year old bloodwork for nutrients. A methylmalonic acid test would be useful for B12 status, not serum B12, which is useful if you take B12. If thays ok, MCV could give you an idea of folate status, or RBC folate. Low ferritin can cause problems so worth measuring and supplementing if needed.

 

[pamojja]

A methylmalonic acid test would be useful for B12 status, not serum B12, which is useful if you take B12. If thays ok, MCV could give you an idea of folate status, or RBC folate.

High MCV could also mean anemia by B12 deficiency beside from folate, alcohol abuse, cirrhosis, or smoking. Just checked my past values, and found before supplementing 10 years ago with even deficient values (B12 179 pg/ml; B9 7.7 pmol/l) surprisingly my MCV has been lowest!

MCV has however been creaping up with supplementing, and serum B12 and B9 have gone >2000 and >20 respectively. MMA just showed sufficient. Therefore in my case I must assume a higher turnover from all the other B vitamins and having added Metformin probably the causes of me still being somehow deficient in folate That's by 1.6 mg/d of B12 and 2 mg/d of B9 during the last 10 years. Since my RBC folate always showed above normal too, it might not have been that trustworthy in my case.

 

[Hd-x]

Looks like you have a real illness, not a medically unexplained one.

Unfortunatly. the knowledge still didnt help if Doctors are untalented.
FM, CFS/ME are usually not accepted as "serious+real" illness. MCAS has been confirmed by bloodwork + biopsy , but the German ICD katalog is not up-to-date (MCAS hasnt been coded into German ICD katalog).
Would need to hire attorney + experts to clear some juristic questions,
Doing so still costs money and suckz.

A friend was just diagnosed major depression, it still took 6month and it didnt cost him any buck the pension autorities granted full pension. The guy is able to work full time and in pension, I am not able to work full time and not in pension.
This tells me something is going wrong.

 

[Learner1]

FM, CFS/ME are usually not accepted as "serious+real" illness.

What I have found is that these diagnoses do not get you treated anywhere in the world. Even here in the US, where insurance will only pay for things they recognize. So, my ME/CFS specialist is excellent at finding ICD10 codes that match up with treatments he wants me to have, and then diagnoses me with that. When I've needed tests and insurance has balked, I have found it's usually because an ICD10 code was used that does not work for that test, but, if we provide the proper ICD10 code, voila! - stuff gets paid for...

Well worth becoming familiar with ICD10 codes, the diagnostic criteria for them, and the treatments they qualify for. And THEN going to the untalented doctor and point out what you have and what you need.... the 16 ICD10 codes I have that aren't G93.3 or R53.82 have been extremely useful in getting treatment.

It's a big game - if they can have ICD10 codes for these, surely there's something useful you can find that fits your situation - your labs certainly suggest you have medical problems that deserve a diagnosis:

• W61.01 – Bitten by parrot
• V97.33XD – Sucked into jet engine, subsequent encounter
• Y92.253 – Injured at an Opera House
• V00.01 – Pedestrian on foot injured in collision with roller-skater
• S10.87XA – Other superficial bite of other specified part of neck, initial encounter
• V95.43XS – Spacecraft collision injuring occupant, sequela
  

 

[Hd-x]

Yeah, I had the same idea last year - still temporary withdrawn it because I was affraid doctors will in such a case still treat the symptoms but not the CFS root case.

Meanwhile I realized that I was wrong, it is just pointless to search for any CFS root treatment.
Next time I visit a doctor I will not mention FM/CFS and just check out what happens if i provide/give them the whole ICD Codes (+bloodwork/CT as proof). (hehe even low CD8 cells have an ICD code)

CFS:
D89.9 Immune disfunction, non specified, R72 low Cd8 cells, D72.9 leuko disease , non specified
B00.7 HSV, B37.81 Candida-Ösophagitis, B34.9 viral infections, non specified
J98- HNO disease, non specified, ICD A49.- bacterial Infection, non specified
R59.1 swollen Lymphnodes, K58.0 IBS, E23.0 Hypogonadism
G47.39 sleep apnoe, G47.0 Insomnia, G44.2 tension headache, J32. Sinusitis chronic
I10.- Hypertonia,I11.-Hypertensive derailments
FMS:
M79.0 Myalgia : Different locations, M54.2 Cervical syndrom
K40.90 sportmens hernia, M23.33 Meniscus rupture, M17.- Knee Arthrosis
M25.45 swollen knee, M25.49 swollen joints, M25.50 Polyarthralgie: different locations
M75.4 AC Joint Impingement
MCAS:
D89.8 Immun disfunction, K52.2 Food Allergic colitis, T78.4 Allergic non specified
N32.8 I-Bladder, N41.1 Prostatitis, ICD R11 nausea, L50 urticaria

Looks nice, I guess, I missed few things.