How to get ridd off this immunologic stuff?

[Hd-x]

vitamin D, Jod are fixed,
but how to get ridd off the other problems?
high: Immunglobulin G2, IL4, IL8, IFN-G, Monoycte, B-Cells, TGF-beta, (Leukotrine / Tryptase)
Low: Cd8, Cd31

What did a high TGF-beta mean?

 

[Hd-x]

some genetic tests;
there is a SOD2 heterogozyt Polimorphism.
This impacts Mitochondria ATP Syntheses if still 1 of 2 allele way for Valin->Alanin transfer works
, did this SOD2 value say antýthing about how much it impacts my ATP synthesis?

 

[Learner1]

some genetic tests;
there is a SOD2 heterogozyt Polimorphism.
This impacts Mitochondria ATP Syntheses if still 1 of 2 allele way for Valin->Alanin transfer works, did this SOD2 value say antýthing about how much it impacts my ATP synthesis?

Some SOD2 SNPs impact the production of superoxide dismutase, so that there is less of it to neutralize superoxide radicals in the mitochondria. Instead, if there is nitric oxide available, they react and become peroxynitrites which can impair complex I function and are highly damaging to mitochondrial membranes, both of which would impact ATP synthesis.

You can measure nitrotyrosine which is a marker of peroxynitrites. If it is high, you can try to reduce the creation of peroxynitrites and repair mitochondrial membranes.

 

[Learner1]

vitamin D, Jod are fixed,
but how to get ridd off the other problems?
high: Immunglobulin G2, IL4, IL8, IFN-G, Monoycte, B-Cells, TGF-beta, (Leukotrine / Tryptase)
Low: Cd8, Cd31

What did a high TGF-beta mean?

These tests are not run by any doctors, but typically by a doctor with immunologic knowledge. It definitely seems like you have some problems. What does the doctor say?

Here is some info on TGF-B:

https://selfhacked.com/blog/tgf/

Have you been tested for viruses, like Epstein Barr and other herpes family viruses?

Have you looked into mast cell activation?

 

[ebethc]

You can measure nitrotyrosine which is a marker of peroxynitrites. If it is high, you can try to reduce the creation of peroxynitrites and repair mitochondrial membranes.

is the nitrotyrosine test standard (ie, via quest or labcorp)?

 

[Hd-x]

@Learner1

Have you looked into mast cell activation?

I attached some other blood work,
And yes, they diagnosed MCAS and prescribed Daosin/ Fenfexadin/Cromolyn sodium .

What does the doctor say?

This is a good and funny question.
First off all, I had Fibromyalgia diagnosed -before- I visited the current doctor which runs all those immunological tests.
His diagnose? He first diagnosed "Depression/BurnOut".
This was somewhat funny, because even psychiatrists didnt confirm this diagnosis.
So yes, I asked the doctor what the heck has depression to do with chronic infections, NK cell problems, Monoycte, B-Cells and so on. He started doing more blood tests and after doing so, I got finally diagnosed CFS + MCAS.

Unfortunatly, they didnt give me any FM/CFS supplemente/protocol list, nor teach or tell me anything about "pacing" to avoid PEM crashes. I buyed some CFS books from Myhill, Haavisto to learn something about CFS.
I dont understand how the MCAS treatment , should cure FM/CFS + fix all these immunological problems?

 

[Learner1]

Those tests say you have serious immune issues. Can you consult another immunologist and not the lazy doctor who ran the rests but doesn't know what to do with the answers they provided? Depression/burn out is not what they say.

There are several.things that cause low CD8 - Epstein Barr and other viruses, multiple sclerosis, etc. Have they been investigated?

You have problems that are treatable. Treating MCAS can help but that is just a part of it and will not treat an active virus, dysautonomia, MS, etc.

 

[Learner1]

is the nitrotyrosine test standard (ie, via quest or labcorp)?

No. Health Diagnostics Research Institute/European Laboratory of Nutrients is the only lab I know of that does it. It's in NJ (or the Netherlands) and your doctor must sign up with them to get the test kit.

 

[Learner1]

you will you will want to watch this, particularly the second half where it talks about problems that can set off mast cells testing that should be done and treatments:

 

[Hope4]

@Learner1 Thank you very much for the video of Dr. Maitland's talk. It was helpful to hear that.

 

[Hd-x]

Can you consult another immunologist and not the lazy doctor who ran the rests but doesn't know what to do with the answers they provided

There are no other immunologists,
2015/16: I had so much muscle pain that I temporarily lost my hairs.
After a while the hairs were growing back, but pain, heartburn. flue-like symptoms and sleep problems still was there. I got Mirtazapine prescribed , it didnt help. I asked for remedy if I can no longer sleep then 4h because off all the pain. I got some medication prescribed and my sleep improved (not the FM pain)
Unfortunatly, he never meassured my BP und I ended up @emergency room with 180/110 BP.
They later told me I have a serious BP problem (reason unclear) + sleep apnoe.
I told him, it is not any good if he didnt listen to my described symptoms
emergency is no fun.

2019:
Herpes was pretty worst on my lips and he agreed to try Valtrex.
The Valtrex reduced my muscle pain, but I still got it prescribed for a short time and all muscle pain came back.
I also have serious issues with my skin (bloody lessions), bladde, prostata, ears and stomach.
An immunologist was at his office and checked my case.
She says it is MCAS and the immunologist seems to be a kindly person, the problem is still other illnesses have not been ruled out, yet.
I lost 8kg during the last 4month, reason unclear.

 

[Learner1]

Well, response to mast cell meds confirms MCAS and could help your symptoms,which helps your overall problem load.patiens Patients are typically put on H1 and H2 antihistamines and cromolyn sodium or per mast cell stabilizers, like quercetin, curcumin, etc. There are several drugs for more severe cases:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4903110/

If I were in your shoes, looking into what is causing your low CD8, which seems to drive the high CD4/CD8 ratio and low CD8/CD28. A higher than normal CD4/CD8 ratio may mean you have:

• Major infection
• Viral infection
• Type of blood cancer

What about autoimmunity?
Low CD8 can point to multiple sclerosis, too.

It looks like you've had high HSV1 and Sister in the past. I don't see that you've been tested for Epstein Barr. Can you get PCR (DNA tests for these)? Your white blood cells have been hugh in the past, indicating you've been fighting some infection. Could chlamydia pneumonia or yersinia or anything else be a problem, bacteria wise? If yes to any of the above, treating the infections may help.

Do you have any reason to suspect MS or a blood cancer? For MS, an MRI might help find it. For the blood cancer, your red or white blood cells would be very abnormal. High B cells (lymphocytes) can be due to:

Infection (bacterial, viral, other)
Cancer of the blood or lymphatic system
An autoimmune disorder causing ongoing (chronic) inflammation

Specific causes of lymphocytosis that you can rule out with testing are:

Acute lymphocytic leukemia
Chronic lymphocytic leukemia
Cytomegalovirus (CMV) infection
HIV/AIDS
Mononucleosis (Epstein Barr)
Other viral infections
Tuberculosis
Vasculitis (blood vessel inflammation)
Whooping cough

How about autoimmunity? Or mold toxicity?

I'm just a patient, not a doctor, but it looks like more specific testing could narrow down whats driving some of this. It seems likely you have one or more infections that, in turn, could be driving autoimmunity. Mold toxicity, Candida, and leaky gut may be factors. Finding and treating these appropriately would likely help greatly.

If you're near Austria, you might want to look into Dr. Lahodny and 10 pass ozone. If you're near Belgium, perhaps KDM could help. And for mast cells, seeing Dr. Theo Theoharides in Cyprus during the summer might be helpful.

 

[Hd-x]

@Learner1
were you able to open the above jpg?
Can you pls try to open this link: https://forums.phoenixrising.me/attachments/immun-bvitamine-pilze-milben-opt-jpg.32474/
Did the link work?
If yes, you will see several blood tests, but attached are still a few blood tests.

Imo the main problem with my case is this:
Do you see what I mean?

https://s18.directupload.net/images/190502/2mv3vlju.jpg
I needed 7 (!) snapshots to catch all blood work pages from my netbook;
over 50 pages blood work, the doctors didnt have the necessary time for all this, they usually still look at the last blood work. Things found in earlier blood works, sometimes just end up in oblivion.



2014/15 I got fully beddridden, fighted back and started lifting some leight weights.
I was active person my whole life, Powerlifting was my life. One cardiologists told me, "you are 49 years old and seriously ill, you can no longer do such sports, it is dangerous if you try to go heavy because off yours hypertensive BP derailments"
I told him, I dont want to die, but if so - I dont want to die in 5 or 10 years as a weak + wrecked person in any shitty German hospital if there is obvisously never any real remedy.
The cardiologists said; "I understand yours thoughts" , gave me some Nitroglycerine spray.
I will visit during the next months a special sportsmen psychologists, she may help to get my training mentally better paired with my illness, she may work out a training strategy to reduce any PEM crashes,
certainly doing so will not fix any immunological problems.

Acute lymphocytic leukemia
Chronic lymphocytic leukemia
Cytomegalovirus (CMV) infection
HIV/AIDS
Mononucleosis (Epstein Barr)
Other viral infections
Tuberculosis
Vasculitis (blood vessel inflammation)
Whooping cough

MS, ALS, mysthenia gravis, parkinson, EBV, MRSA, HIV has been ruled out, and yes there is some mold stuff in my blood imo not enough to explain it all - there is also leaky gut
LTT: HSV I, VZV, candida, staphylokkoen.
High HSV I load confirmed with IgG
cpn unclear, some blood work say yes and some no.
My body didnt produce anymore testosterone, I got T- injections.

Because off the unclear hypertensive derailments ,
I have concerns it could be any slow processing cancer like pheochromocytoma - such cancer releases adrenaline spikes and causes hypertensive derailments . Certainly, it may also be possible that my hormone system is just in a "constant-stress-state", because off all those chronical infections.
Nevertheless, adrenal glands , stomach, lungs and so on, should imo be checked with any image processing methods.

There should also be a strategy how to get finally ridd off candida, chronic infections and so on.
I am trying to treat it by myself as best I can do with LDN, L-Lysine (HSV1), L-Glutamin (Leaky gut), Gluthation, Vitamin pills, berberine (fights candida, leaky gut + bacteria/viruses in the gut) and some other herbal stuff (from Harold Buhners books)
I also have immnovir pranobex @home, but I am not sure if this is any good idea-
As far as I know it increases CD4 cells, I need more Cd8 cells.

 

[pamojja]

Imo the main problem with my case is:
zillions pages off blood work was done and even the best doctor may now obvisously lost the "overview".
The doc didnt have the necessary time to watch all off his own blood works he made during the years.
He usually still looks at the last blood work and so most off the other things (found in earlier blood work) end up in oblivion.

I needed 7 (!) snapshots to catch all blood work pages from my netbook; I dont know exactly how much blood work papers was done, I stopped counting @ 50.
all this blood work cost me more then my whole car, and yes I am a little bit dissapointed from the doctors, running and running blood tests - but I dont feel better.

I've the same problem. Though I didn't have the money for a car, the special lab-tests you've done (only paid out of my pocket about 1100,- for some reasonably priced the last 10 years), nor am able to pay a practitioner regularly - but I do have a good-hearted GP doing regular blood works and writing referrals. Neither my GP - who 'treats' up to 150 patients in a 2 hours period!!! (due to not refusing any patient with migratory history, as most other GPs nowadays do) - nor the specialists have the time to look at the whole. On the contrary found specialists even more narrow-minded.

However, I still found it helpful to maintain a spreadsheet of all test results for making it easy to get online help, for myself to see trends and correlations otherwise remaining hidden over too many pages of discreet test-results, and finally I haven't given up the hope of one day finding a practitioner up to that task.

That way also up to 50 different lab-works (comprising above 2400 data-points) done over a period of 10 years, (including basic medical history in the notes) is compressed in just 8 pages of an PDF.

Though so many of my markers are still far from optimal, just by nudging them in the right direction I did experience remission of a walking disability from PAD 4 years ago.

 

[Hd-x]

@all
I need to add, my english is not the best, so dont worry or be confused if I correct my sentences dozens off times and if parts in the above post are missing/added or whatever so.

I've the same problem. Though I didn't have the money for a car, the special lab-tests you've done (only paid out of my pocket about 1100,- for some reasonably priced the last 10 years), nor am able to pay a practitioner regularly -

I am really sorry to hear this, my friend , we are in the same boat.
I had to sold my car that I owned 30years (Opel Kadett C), I loved my car sometimes more then anything else. -and now it is gone for a bunch off blood work and got a scary Ford Ka from the scrapyard in return, heater just nothing works and I dont have the energy to repair all this shit.

I will look at yours pdf,
how did you make the pdf - ist there a freeware for creating a pdf sheet?

 

[pamojja]

I will look at yours pdf,
how did you make pdf - ist there a freeware for creating a pdf papers?

The pdf is actually created using google spreadsheets, which is just a free to use online spreadsheet program, from which you can directly download all or parts as pdf, or any other spreadsheet format. You could also use excel, libre office calc, or any other spreadsheet program. The advantage of google spreadsheets is that you can present it online right away. There are other such online services

What did a high TGF-beta mean?

Here is some info on TGF-B:

https://selfhacked.com/blog/tgf/

An other option for at least starting to decipher the nuances of lab results is labtestanalyzer.com, a paid-for offspring from selfhacked.com. I registered for trying it out ($ 35,- for a half year subscription) though in the end, of their 123 individual supplement suggestions tailored especially for all my lab-results, I was already taking all except 23 (mainly individual probiotic strains) for many years. But I might be an exception.

Their entry on high TGF-beta (which I think is ok to post just a part of, since its really well referenced information is actually a good advertisement for their service):

High TGFb-1 can be caused by:

• Wounds and burns [R]
• Bone fractures [R]
• Exercise (short-term) [R]
• Low oxygen (hypoxia) [R]
• Increased dietary salt intake [R]
• Tobacco and alcohol consumption [R]

TGF-b1 is higher in:

• Inflammatory diseases such as asthma and psoriasis [R, R]
• Obesity [R]
• Chronic Inflammatory Response Syndrome (CIRS) - body’s “out of control” inflammatory response to a toxin (i.e. mold, Lyme) [R]
• Fibrotic diseases - tissue scarring (i.e. pulmonary fibrosis, scleroderma, systemic sclerosis, and keloids) [R, R]
• Viral infections such as Epstein-Barr virus and HIV infection [R, R]
• Some autoimmune disease such as multiple sclerosis and autoimmune hepatitis [R, R]
• Postmenopausal osteoporosis [R]
• Marfan syndrome (a genetic disorder of the connective tissue) [R, R]
• Various cancers (esophageal, stomach, bone, skin, and pancreatic cancer) [R, R, R, R, R]
• Hormone replacement therapy can also increase TGF-b1 [R].

Higher levels of TGF-b1 are associated with:

• Narrowing of the arteries and hearts disease [R, R]
• Increased risk of heart failure (in older adults)[R]
• Worse prognosis in some types of cancer and better prognosis in others [R, R, R, R]

Symptoms of high TGF-B-1 may include:

• Hair loss [R, R]

Address any underlying health conditions, including chronic inflammation. Losing weight if overweight and going on an anti-inflammatory diet can help.

Avoid water-damaged buildings. Mold-exposure can trigger CIRS in predisposed people [R].

Decrease your salt intake [R].

Limit your intake of alcohol and tobacco [R].

Supplements that can help:

• Vitamin D [R]
• Curcumin (found in turmeric) [R]
• Apigenin [R]
• Black Cumin Seed Oil /Thymoquinone [R]
• Ginkgo biloba [R]
• Ursolic acid [R]
• Reishi [R]
• Fucoidan [R]
• Resveratrol [R]
• Berberine [R]
• Grape Seed Extract [R]
• Astragalus [R, R]
• Hesperidin [R]
• Garlic [R]
• Gotu Kola /Asiatic Acid [R]
• Emodin (found in Fo-Ti, Resveratrol, Rhubarb, Aloe)[R]
• Naringenin [R]
• Ginseng [R]
• Kudzu root/Puerarin [R]

 

[Hd-x]

My Vitamin D level is with 56 fine,
Berberine, Grape seed extract, Ginko, Garlic/curcuma (as food) are allready in my daily NEM regime.
There is not much left that could be added,
Some chinese fungi and astragalus are powerfull, but had it ruled out times ago if it was for few things contraindicated in my case. (don´t remember exactly what it was, the information was gathered times ago from Selfhacked & Buhners books,)

Regarding to the list,
it seems high TGF-ß could be anything from big concerns (cancer) to less concerning things (exercises).
Obvisously, without any further tests it would be hard to judge what a high TGF-ß means at last.

 

[pamojja]

Obvisously, without any further tests it would be hard to judge what a high TGF-ß means at last.

It's probably also a question of perspective, ie. seeing the glass half empty or half full. Can't help but think most conditions on that list are already ruled out by observations.

 

[Hd-x]

If I were in your shoes, looking into what is causing your low CD8, which seems to drive the high CD4/CD8 ratio and low CD8/CD28. A higher than normal CD4/CD8 ratio may mean you have:

• Major infection
• Viral infection
• Type of blood cancer

What about autoimmunity?
Low CD8 can point to multiple sclerosis, too.

I followed yours advise, went to University hospital and was undergoing CT, Ultrasonic, TRUS, stomach reflections, biopsy and so on, to rule out blood cancer, organ + bone metastasis, mastozystosis, some autoimunne diseases.
They checked for HIV, Hepatitis, EBV, CMV.
I dont have all this, they used a differential bloodwork, checked with mikroscope for bood cancer cells,-
their differential bloodwork showed some increased segmentkernige neutrophile, a toxic granulation, low CD8 cells,
some swollen lymph notes in ultrasonic, they didnt look maligne.

They dont have any explanation for it, they cant even tell what causes the toxic granulation,
I guess it will still end up by confirming CFS/ME, FM, MCAS or however so they may call it,

 

[Learner1]

You're speedy!

What tests did they do for mastocytodis, MCAS and toxic translation? What were the results?

What do you mean by "increased segmentkernige neutrophile"?

What was the explanation for low CD8 cells?

Given what you've shatrd, something real is causing your symptoms. They may not have found it yet, but it is not a "medically unexplained illness." There is an explanation.

And MCAS, if you have it, is treatable. But it doesn't explain all of your symptoms. There's likely something else that is treatable.

Grest news thst you don't have cancer or HIV! Did they do PCR (DNA) test for EBV and alm the other infections? Or just antibodies?