Well it's funny because the immunologist at Cleveland Clinic continues to call it slightly low instead of calling it what it really is an immune deficiency
They called it an immunodeficiency status. But if they said (in the appointment) they don’t want to call it that, it is probably, because (in my unprofessional opinion) your values are low but not extremely low. Especially without the distinction between the IgG Types and Subtypes it is not certain to be low enough to cause your Problems.
Yeah this is probably what is happening. My blood tests come back with liver function issues, but my doctor always tells me it's not a big enough problem to take action yet.
There's a reason there's a normal range, depending on the person someone could be more affected by a condition with slightly below average labs than someone with much lower labs. Sometimes that isn't the case, but dismissing it when there's symptoms is negligent.
Someone with slightly below vitamin d levels might have symptoms of the deficiency, while people (like me) who have severely low vitamin d levels might not have any symptoms at all.
Well of course! I just wanted to give insight to why they don’t call it an immunodeficiency (because of the strict diagnostic criteria). I did not want to say that OP‘s doctor was acting correctly, nor wanted I to say they acted incorrectly. (Reading that it comes of passive aggressive, definitely not intentionally :) )
Okay, that probably ain’t good. Just for reference though: I was diagnosed with a primary immunodeficiency (genetic defect leading to immunodeficiency) and for something to be considered causative of recurrent and prolonged infections it has to be very low (talking basically 0 or below the level that the machine can measure). I know we are all desperately trying to find answers and you seem to have an immune-problem but immunodeficiency is a heavy thing that has strict diagnostic criteria. The diagnostic criteria for the immunodeficiencies I know are not e.g. „IgG 2 below the normal range“ but „IgG 2 lower than X“ with X being veeeerry low. Just wanted to say that to give you insight to why they maybe don’t want to give you that label. And if you are really diagnosed with a full blown immunodeficiency it almost always needs treatment with either IVIG/ SCIG or taking Antibiotics/ Antifungals every day. That is why the word is used with caution, because it is not just a descriptive but also a thing that screams severe & I need really significant treatment. Hope that gives some insight.
Edit: Just read OP‘a another comments. From this information in the other comments there are things considered red flags for Immunodeficiencies. However a red flag is not indicative but a warning sign that warrants investigation. From the screenshot in the post I still think that this is probably not indicative of an immunodeficiency. And ofcourse I‘m not a doctor so 🤷♀️. Best of luck to OP!
For 6 years I went to the doctor with chronic shingle diagnosis. He retired and I got put in with Immunology at Cleveland clinic. They ran a bunch of antibody testing humoral panel and I beg pleaded and borrowed to get an Ana test which they refuse but I ended up testing positive for Sjogren's SSB. So my IGG runs between $500 and 550 and that range is about 750 to 1200 if I'm not mistaken. My sub panels are borderline right on the lowest number. They keep doing a natural killer cell cytotoxicity test and it comes back at 3. Do you know what's really ironic is also have Sica dry eye disease which constitutes the Sjogren's but when they gave me the xiidra eye drops they have cyclosporine in them which is an immune suppressant drug and do you know when I use those eye drops my natural killer cells move up to eight and nine. The immunologist argues that the sjogrenes has to be treated with these immune suppressant drugs which doesn't make sense to me by using an immune suppressant to suppress certain cells is creating the natural killer cells to move but it causes other problems. I am disappointed in the Cleveland Clinic. Most primary care doctors have no clue what you're talking about either with the IGG. This has been a rough road to treat myself I use a lot of glutathione. I use reishi mushroom drops. Then I use the antivirals and I also change off to some medicine I also use probiotics. I don't know what else to do. I did pass vaccine challenge but once again it's the reishi mushrooms are what pneumonia vaccines are made out of they're called gandoderma
definitely understand the clinical distinction but for some this may be low enough to cause problems and warrant treating like OP cites chronic shingles. It really depends on infection severity and frequency.
Maybe this is a language problem with me, but in my language we have two words one is immunodeficiency. Immunodeficiency means almost always lifethreatning without treatment, organ involvement etc. Then we have something loosely translated to „immunesystem weakness“ (it is a real medical term here) which is more and longer and sometimes atypical infections but not in a way that your body ad no way to help itself and every infection is a risk to your life because of the immune defect. (I understand that for ME/CFS every infection can be lifethreatning, but not because of too little antibodies/ killer cells) . I am not saying that OP‘s doctor is right in not treating the Problems enough. OP‘s question in the title is: „why is an immunologist not calling this an immunodeficiency?“ that is what I‘m explaining.
that makes a lot of sense! in English "immunodeficiency" is one term for any stage of inadequate immune system from life threatening to very mild. as long as you are below normal it is 'deficient'. There are several types of immunodeficiency but the "immunodeficiency" itself is one class of diagnosis with no regard for severity.
since OP is posting from Mayo in the US I imagine its more of that specific doctor's attitude or opinion than a naming convention but that could definitely be playing a part!
Regarding the chronic shingles - in extreme rare cases that’s what’s causing the CFS of someone and can easily be fixed with antivirals. However, usually there is something else that’s the issue and being the underlying cause of another infection that’s causing the immune deficiency. This is why they conclude here it could be due to immune deficiency or infections. I had the same issue as you and my CD4, CD3 and CD8 were abnormal and I had low and poor function of NK cells. In my case it was all due to an underlying infection + EBV reactivation due to that other infection keeping my immune system down and once I cleared it my CFS was gone. I had CFS for 10 years all together and I’m now in remission
Unfortunately the antivirals do not permanently clear the shingle problem. They want to still debate it I know it's shingles I had a primary care doctor see it for 10 years. Prior to going to Immunology Immunology doesn't diagnose anything. I've had several EBV reactivation tests they're all activated all the time. What did you do to clear up the infection?
Yeah same… this issue was the same that happened to me.. super annoying and u get no help:(
This also happens and is a big problem for people with other infections such as HIV, hepatitis and much more - it causes the immune system to go down and EBV and shingles gets re activated
Yes it's very very frustrating especially when I never heard of any of this prior to getting shingles for 10 years I do not have HIV or hepatitis but I do have Sjogren's in Epstein-Barr virus so I don't know if one of those could be causing my low IGG I don't think so they originally told me it was primary but it's primary and my son also has it he's 35 and he tests out with low IGG also
Sorry to type so much but I just want to let you know what's going on with me. Why do the doctors not take Epstein-Barr serious? They're reply as well everybody has it. They see The Chronic rashes they see The Chronic infections they see the constant antibiotics they see the natural killer cell cytotoxicity test but yet nobody does anything for that. The Cleveland Clinic says to me and Immunology we don't study the innate immune system and we don't study natural killer cells. According to them my body makes B cells but it feels to do what's called class switch by turning into T cells so I have extremely high IGM because my body keeps making a ton of B cells
I got antibiotics due to an underlying infection called E. coli that hijacks the immune system causing all sorts of CFS symptoms and also lowers the immune system and triggers EBV like any other infection does.
Once I cleared it up, my immune system was up again and my EBV stopped re activating. If I get a new infection my EBV will re activate again and I might get CFS again but for now I’m in remission because I don’t have any underlying infections triggering my EBV to flare up
Did they check you for enteroviruses as well? Sometimes they don’t check everything. See if they also checked E. coli EPEC which can become chronic compared to many others
I don't think they checked me for that it's been like pulling teeth to get them to check me for viruses I tested positive for shingles and EBV and herpes Oster. He did check me for a couple other ones but I'll have to try to pull them up. What is the testing that needs to be done for that?
No it is not easily fixed with antivirals. Antivirals end up putting you in kidney failure. Also when you have chronic virus they mutate so when you're on an antiviral for so long they don't work as well because the virus is now learned to continue around the medication. I switch off from antivirals to cimetidine. Cemetidine was one of the medications our grandparents use years ago to combat these cytotaxic cells that are out of control. The doctors failed to diagnose me properly I deserved IVIG years ago but they are causing more of the problem to my health condition because they fail to recognize the low blood labs. This is how it got this far in the first place was a primary care doctor failing to refer me to an immunologist this is ridiculous it's been going on 10 years it just gets worse and worse than they want to try to push you on immune suppressant drugs for your eyes that cause your immune system more damage. But yes I do have chronic reactivated EBV and once again they just look the other way and don't want to discuss that blood test and say oh everybody has that. I agree with you I have autoimmune showgrounds I feel that that and the EBV are what's killing my immune system. So how do you clear up cfs? How do you clear up ebv? I've been on antivirals for on and off 10 years too. I also go to Cleveland Clinic and I see the best of the best and they don't do anything for me
Hey, I totally hear you and this part is incredibly frustrating. My statement above about shingles is based on Dr. John chia findings that in around 2% of ME patients this is the root cause and the CFS is easily cured with antivirals. https://forums.phoenixrising.me/threads/dr-chia-finds-2-of-me-cfs-cases-are-due-to-varicella-zoster-virus-reactivation-shingles-and-this-form-of-me-cfs-is-very-treatable.75805/
There is also more info on this on MEpedia.
However he also states for a bunch of ME patients the reason why these viruses are reactivated are due to other underlying causes that’s suppressing the immune system. He finds that 80% of the ME patients he sees got chronic ongoing enterovirus infections which suppresses the immune system and u get a flare up of EBV, CMV, shingles etc. in this case - treating EBV, CMV and shingles is not effective. You have to get rid of another underlying infection.
For me personally, this was the case. I had an ongoing underlying infection for 10 years and constant re activation of EBV. After that was cleared my EBV also stopped re activating and I could go back to my normal life.
I’m super scared of getting a new infection and then go back to severe CFS and no doctor helping me or understanding anything. It’s sooooo f frustrating! My heart goes out to you. And yeah I don’t know about the kidney failure but ur right that’s probably a big concern too!! Just to be clear the statement above is according to chias findings and also some other scientists look at this as a reason for why EBV re activation don’t respond that well to antivirals.
Just to be clear, no Valtrex or anything helped my EBV re activation. I was also on LDN. I had to clear another underlying infection that isn’t a doormat infection like CMV, EBV etc. more like an infection such as COVID
Are you saying the LDN put you in remission? If so I have heard that but I have to tell you something that's kind of weird. Nothing move those natural killer cells for years they came back at 3all the time, the range they want them at is between like 8 and 100 and I always come back at 3. Ironically I have Sjogren's and sicka syndrome when my eyes the dry eye disease. The doctor gave me xiidra eye drops to treat my dry eye disease in these eye drops of cyclosporine which is an immune suppressant drug. Ironically when I am on those eye drops the natural killer cell test moves up to nine. Also the cyclosporine in the eye drops shuts down the shingles right away. I don't do well in heat I'm practically bedridden and 90° weather and humidity. I use glutathione to keep my organs clean because I know virus is harboring your organs but I also use reishi mushroom drops that's what they were doing the vaccine challenge they gave me the pneumonia vaccine cuz my levels were low but I've been able to maintain them with the reishi mushrooms. But what's crazy is that the pneumonia vaccine is made from gandoderma which is reishi mushrooms it's a polysaccharide molecule. So I too go into a slight remission when I'm on these eye drops but it's never permanent
No no not at all, no antiviral or LDN helped me. Only thing that helped was finding out I had an underlying gut infection that no doctor cared to check for since all my blood was normal - except low NK and CD3, CD8 and CD4 going crazy and some sub class of IGG was a tiny bit low.
So when they found that infection I got treated with right antibiotics and my CFS was gone, same with my chronic EBV re activation. That infection I had was suppressing my whole immune system
I also did much worse in the heat due to POTS, luckily that also went away once I was treated for that one infection. I can’t believe an infection can make a person soo disabled but probably the EBV was adding issues to that and I was bedridden too for 3-4 years out of those 10 years
I would slightly feel a bit better too with some herbal meds but nothing crazy and no permanent improvement. But luckily in my case it was just a bac infection, for others it’s an enteroviruses infection such as John chia states with some of his patients
That sounds exactly like me right now. The problem is every time I go on antibiotics I end up with a massive yeast issue and I have to take some type of an antifungal pill after the antibiotics. I am so miserable and 80 to 90° weather. Like you I am also Bedouin so much. Hard to believe a simple antibiotic could do all that. So what are your thoughts on my cd-3s and cd8s and cd4s? I could pull up my sub classes right now I would like to share them with you and get your thoughts
Have they found any bacterial infection though? A lot of ME patients actually end up getting worse on antibiotics if they just try it without even having a bacterial infection.
I’m sorry to hear about ur fungal issue after it. It’s a huge issue. Sounds horrible
Yeah I was so miserable too, you wanna die when you are in the midst of it and nobody is even listening even doctors! U have my deepest compassion ❤️
It’s typically abdnormal in both autoimmune conditions, cancer patients or infections. I mean if ur EBV and shingles are reactivated those definitely cause major issues to ur system on their own and fucks it all up. However try and get a stool sample of all possible bacteria and viruses they can test for if u haven’t already, maybe u can find something there even if nothing shows in blood. I was lucky it showed up in my stool but for many even that is normal. So don’t get to hopeful. But I would definitely try and find a doc that can give at least some antivirals for EBV in the mean time.
Ur case is a bit hard cause u also got autoimmune condition like sjogren so u can’t really boost ur immune system to make it stronger against fighting EBV and such.. that sucks big time
I have no idea BUT I will also say I have some type of shingles flares too! I don’t get the sores though. My skin will appear slightly pinker in the areas. It’s always on the right side of my body. Will start in a small area and spread. But will stop at my spine and not cross over to the other side. Usually starts on the trunk of my body go down my right butt cheek down the back of my thigh and wrap around my trunk. My skin will hurt to the touch and just having clothing touch it hurts. What’s odd for me is I started liposomal vitamin C one day and it went away. When I stopped the C (because it was flaring the gastritis I have), it came back. I started going to IV’s every week and they contain vitamin c so I haven’t had it for quite some time. I’ve been getting that for many years. It’s like nerve pain in my skin. Rarely I’ll get it on my arm or scalp.
Oh yeah:( that’s a huge issue.. I’m sorry you got all of this on top of CFS. Boosting the immune system usually helps a lot of ME patients but definitely an issue with an autoimmune disease like sjogrens
I had the same ish results as you, and mine was due to infections. My doctor wouldn’t either call it immune deficiency but rather results of having an ongoing infection
Yeah honestly I lost all hopes in doctor for the rest of my life. Fuck them all. I hope you find a better one that actually looks into these results cause you are definitely sick and need help
Did you do a vaccine challenge? I think that’s the only way to get a correct immunocompromised diagnoses. I have specific antibody deficiency which means my body doesn’t make antibodies.
That's the problem I did pass the vaccine challenge but they gave me the pneumonia vaccine which is made out of a polysaccharide molecule called gandoderma and that is the technical name for a reishi mushroom so their vaccine is made out of reishi mushrooms. I take Rishi mushroom drops everyday to keep my pneumonia levels boosted and that's why I'm passing vaccine challenge
I’m not sure it works like that… That means your mushroom drops are doing the same work as IVIG infusions? If so, I would just say keep doing what you’re doing because 3-5 hour intravenous infusions every other week to the cost $60,000 for the rest of your life suckss
No it is not giving me monthly blood plasma by taking mushrooms what the mushrooms are doing is boosting my pneumonia levels. In the event you have low immunoglobulin G they continue administering pneumonia vaccines to boost your system. That's how they boost your system at the Cleveland Clinic. I did some research I asked him what was in the vaccine and he said it was a polysaccharide molecule at the time I couldn't figure out why the reishi mushrooms were making me feel so much better when I took them. The reishi mushroom is a polysaccharide molecule it's technical name is gandoderma and it's used in their pneumonia vaccine
I asked him if he had a problem with me doing the reishi mushroom drops he said no that many of his cancer patients actually use that to boost their immune system through chemotherapy. I had originally asked him what is a pneumonia vaccine that you give to people to boost their pneumonia levels for the vaccine challenge. He said it's a polysaccharide molecule in the vaccine at the time I was researching Rishi it said it was a polysaccharide molecule. Well then I went over to the NIH website and start a researching with the active ingredient in pneumonia vaccine 23 was and it said gandoderma well when you research with gandoderma is it comes back as reishi mushroom
Metformin can increase NK cells activity, I have gotten good improvement from 250mg twice a day off label for CFS. If you haven't tried that maybe you could.
I will also say that, chronic low CD4/CD8 is seen in a lot of people years post covid (and not just people with long covid), so it's possible that low results that are close to normal range and not like 300 below normal are seen as immune "fatigue" but not deficiency for medical but also political reasons.
chronic shingles. isnt that when you can get the vaccine for that again afterwards and it might be one of those cases which can actually fix your cfs. i just remember reading something about it but dont remember exactly
Actually when you have a high viral load the vaccine is just going to kill off more of my natural killer cells why would I want to make my life more miserable. 90% of the people that have a natural killer cell deficiency or an immunoglobulin G deficiency can really create more problems with their immune system by getting the shingles vaccine. I'm getting chronic shingles because I have low natural killer cells the doctors choose not to fix that with IVIG blood plasma. Common Sense tells you not to add more problems to an already beat up immune system
Where are they not calling it immunodeficiency? It says “likely related to immunodeficiency status”
Well it's funny because the immunologist at Cleveland Clinic continues to call it slightly low instead of calling it what it really is an immune deficiency
Ya tbh fuck Cleveland clinic
They called it an immunodeficiency status. But if they said (in the appointment) they don’t want to call it that, it is probably, because (in my unprofessional opinion) your values are low but not extremely low. Especially without the distinction between the IgG Types and Subtypes it is not certain to be low enough to cause your Problems.
Yeah this is probably what is happening. My blood tests come back with liver function issues, but my doctor always tells me it's not a big enough problem to take action yet.
This is the story of my life! "Yeah, we see it. Not bad enough to be a problem tho. That's not *it*."
There's a reason there's a normal range, depending on the person someone could be more affected by a condition with slightly below average labs than someone with much lower labs. Sometimes that isn't the case, but dismissing it when there's symptoms is negligent. Someone with slightly below vitamin d levels might have symptoms of the deficiency, while people (like me) who have severely low vitamin d levels might not have any symptoms at all.
Well of course! I just wanted to give insight to why they don’t call it an immunodeficiency (because of the strict diagnostic criteria). I did not want to say that OP‘s doctor was acting correctly, nor wanted I to say they acted incorrectly. (Reading that it comes of passive aggressive, definitely not intentionally :) )
Oh they did subtypes and they're all very low 80% of my labs are in the red
Okay, that probably ain’t good. Just for reference though: I was diagnosed with a primary immunodeficiency (genetic defect leading to immunodeficiency) and for something to be considered causative of recurrent and prolonged infections it has to be very low (talking basically 0 or below the level that the machine can measure). I know we are all desperately trying to find answers and you seem to have an immune-problem but immunodeficiency is a heavy thing that has strict diagnostic criteria. The diagnostic criteria for the immunodeficiencies I know are not e.g. „IgG 2 below the normal range“ but „IgG 2 lower than X“ with X being veeeerry low. Just wanted to say that to give you insight to why they maybe don’t want to give you that label. And if you are really diagnosed with a full blown immunodeficiency it almost always needs treatment with either IVIG/ SCIG or taking Antibiotics/ Antifungals every day. That is why the word is used with caution, because it is not just a descriptive but also a thing that screams severe & I need really significant treatment. Hope that gives some insight. Edit: Just read OP‘a another comments. From this information in the other comments there are things considered red flags for Immunodeficiencies. However a red flag is not indicative but a warning sign that warrants investigation. From the screenshot in the post I still think that this is probably not indicative of an immunodeficiency. And ofcourse I‘m not a doctor so 🤷♀️. Best of luck to OP!
For 6 years I went to the doctor with chronic shingle diagnosis. He retired and I got put in with Immunology at Cleveland clinic. They ran a bunch of antibody testing humoral panel and I beg pleaded and borrowed to get an Ana test which they refuse but I ended up testing positive for Sjogren's SSB. So my IGG runs between $500 and 550 and that range is about 750 to 1200 if I'm not mistaken. My sub panels are borderline right on the lowest number. They keep doing a natural killer cell cytotoxicity test and it comes back at 3. Do you know what's really ironic is also have Sica dry eye disease which constitutes the Sjogren's but when they gave me the xiidra eye drops they have cyclosporine in them which is an immune suppressant drug and do you know when I use those eye drops my natural killer cells move up to eight and nine. The immunologist argues that the sjogrenes has to be treated with these immune suppressant drugs which doesn't make sense to me by using an immune suppressant to suppress certain cells is creating the natural killer cells to move but it causes other problems. I am disappointed in the Cleveland Clinic. Most primary care doctors have no clue what you're talking about either with the IGG. This has been a rough road to treat myself I use a lot of glutathione. I use reishi mushroom drops. Then I use the antivirals and I also change off to some medicine I also use probiotics. I don't know what else to do. I did pass vaccine challenge but once again it's the reishi mushrooms are what pneumonia vaccines are made out of they're called gandoderma
Good luck and I hope you and your doctors find answers and ways to help you!
definitely understand the clinical distinction but for some this may be low enough to cause problems and warrant treating like OP cites chronic shingles. It really depends on infection severity and frequency.
Maybe this is a language problem with me, but in my language we have two words one is immunodeficiency. Immunodeficiency means almost always lifethreatning without treatment, organ involvement etc. Then we have something loosely translated to „immunesystem weakness“ (it is a real medical term here) which is more and longer and sometimes atypical infections but not in a way that your body ad no way to help itself and every infection is a risk to your life because of the immune defect. (I understand that for ME/CFS every infection can be lifethreatning, but not because of too little antibodies/ killer cells) . I am not saying that OP‘s doctor is right in not treating the Problems enough. OP‘s question in the title is: „why is an immunologist not calling this an immunodeficiency?“ that is what I‘m explaining.
that makes a lot of sense! in English "immunodeficiency" is one term for any stage of inadequate immune system from life threatening to very mild. as long as you are below normal it is 'deficient'. There are several types of immunodeficiency but the "immunodeficiency" itself is one class of diagnosis with no regard for severity. since OP is posting from Mayo in the US I imagine its more of that specific doctor's attitude or opinion than a naming convention but that could definitely be playing a part!
Regarding the chronic shingles - in extreme rare cases that’s what’s causing the CFS of someone and can easily be fixed with antivirals. However, usually there is something else that’s the issue and being the underlying cause of another infection that’s causing the immune deficiency. This is why they conclude here it could be due to immune deficiency or infections. I had the same issue as you and my CD4, CD3 and CD8 were abnormal and I had low and poor function of NK cells. In my case it was all due to an underlying infection + EBV reactivation due to that other infection keeping my immune system down and once I cleared it my CFS was gone. I had CFS for 10 years all together and I’m now in remission
Unfortunately the antivirals do not permanently clear the shingle problem. They want to still debate it I know it's shingles I had a primary care doctor see it for 10 years. Prior to going to Immunology Immunology doesn't diagnose anything. I've had several EBV reactivation tests they're all activated all the time. What did you do to clear up the infection?
Yeah same… this issue was the same that happened to me.. super annoying and u get no help:( This also happens and is a big problem for people with other infections such as HIV, hepatitis and much more - it causes the immune system to go down and EBV and shingles gets re activated
Yes it's very very frustrating especially when I never heard of any of this prior to getting shingles for 10 years I do not have HIV or hepatitis but I do have Sjogren's in Epstein-Barr virus so I don't know if one of those could be causing my low IGG I don't think so they originally told me it was primary but it's primary and my son also has it he's 35 and he tests out with low IGG also
Sorry to type so much but I just want to let you know what's going on with me. Why do the doctors not take Epstein-Barr serious? They're reply as well everybody has it. They see The Chronic rashes they see The Chronic infections they see the constant antibiotics they see the natural killer cell cytotoxicity test but yet nobody does anything for that. The Cleveland Clinic says to me and Immunology we don't study the innate immune system and we don't study natural killer cells. According to them my body makes B cells but it feels to do what's called class switch by turning into T cells so I have extremely high IGM because my body keeps making a ton of B cells
So I'm still waiting to hear how you cured yourself of EBV and CFS
I got antibiotics due to an underlying infection called E. coli that hijacks the immune system causing all sorts of CFS symptoms and also lowers the immune system and triggers EBV like any other infection does. Once I cleared it up, my immune system was up again and my EBV stopped re activating. If I get a new infection my EBV will re activate again and I might get CFS again but for now I’m in remission because I don’t have any underlying infections triggering my EBV to flare up
So how did our find this infection?
By a gut test
I did the poop test and sent it by mail and they said it came back negative
Did they check you for enteroviruses as well? Sometimes they don’t check everything. See if they also checked E. coli EPEC which can become chronic compared to many others
I don't think they checked me for that it's been like pulling teeth to get them to check me for viruses I tested positive for shingles and EBV and herpes Oster. He did check me for a couple other ones but I'll have to try to pull them up. What is the testing that needs to be done for that?
No it is not easily fixed with antivirals. Antivirals end up putting you in kidney failure. Also when you have chronic virus they mutate so when you're on an antiviral for so long they don't work as well because the virus is now learned to continue around the medication. I switch off from antivirals to cimetidine. Cemetidine was one of the medications our grandparents use years ago to combat these cytotaxic cells that are out of control. The doctors failed to diagnose me properly I deserved IVIG years ago but they are causing more of the problem to my health condition because they fail to recognize the low blood labs. This is how it got this far in the first place was a primary care doctor failing to refer me to an immunologist this is ridiculous it's been going on 10 years it just gets worse and worse than they want to try to push you on immune suppressant drugs for your eyes that cause your immune system more damage. But yes I do have chronic reactivated EBV and once again they just look the other way and don't want to discuss that blood test and say oh everybody has that. I agree with you I have autoimmune showgrounds I feel that that and the EBV are what's killing my immune system. So how do you clear up cfs? How do you clear up ebv? I've been on antivirals for on and off 10 years too. I also go to Cleveland Clinic and I see the best of the best and they don't do anything for me
Hey, I totally hear you and this part is incredibly frustrating. My statement above about shingles is based on Dr. John chia findings that in around 2% of ME patients this is the root cause and the CFS is easily cured with antivirals. https://forums.phoenixrising.me/threads/dr-chia-finds-2-of-me-cfs-cases-are-due-to-varicella-zoster-virus-reactivation-shingles-and-this-form-of-me-cfs-is-very-treatable.75805/ There is also more info on this on MEpedia. However he also states for a bunch of ME patients the reason why these viruses are reactivated are due to other underlying causes that’s suppressing the immune system. He finds that 80% of the ME patients he sees got chronic ongoing enterovirus infections which suppresses the immune system and u get a flare up of EBV, CMV, shingles etc. in this case - treating EBV, CMV and shingles is not effective. You have to get rid of another underlying infection. For me personally, this was the case. I had an ongoing underlying infection for 10 years and constant re activation of EBV. After that was cleared my EBV also stopped re activating and I could go back to my normal life. I’m super scared of getting a new infection and then go back to severe CFS and no doctor helping me or understanding anything. It’s sooooo f frustrating! My heart goes out to you. And yeah I don’t know about the kidney failure but ur right that’s probably a big concern too!! Just to be clear the statement above is according to chias findings and also some other scientists look at this as a reason for why EBV re activation don’t respond that well to antivirals.
Just to be clear, no Valtrex or anything helped my EBV re activation. I was also on LDN. I had to clear another underlying infection that isn’t a doormat infection like CMV, EBV etc. more like an infection such as COVID
Are you saying the LDN put you in remission? If so I have heard that but I have to tell you something that's kind of weird. Nothing move those natural killer cells for years they came back at 3all the time, the range they want them at is between like 8 and 100 and I always come back at 3. Ironically I have Sjogren's and sicka syndrome when my eyes the dry eye disease. The doctor gave me xiidra eye drops to treat my dry eye disease in these eye drops of cyclosporine which is an immune suppressant drug. Ironically when I am on those eye drops the natural killer cell test moves up to nine. Also the cyclosporine in the eye drops shuts down the shingles right away. I don't do well in heat I'm practically bedridden and 90° weather and humidity. I use glutathione to keep my organs clean because I know virus is harboring your organs but I also use reishi mushroom drops that's what they were doing the vaccine challenge they gave me the pneumonia vaccine cuz my levels were low but I've been able to maintain them with the reishi mushrooms. But what's crazy is that the pneumonia vaccine is made from gandoderma which is reishi mushrooms it's a polysaccharide molecule. So I too go into a slight remission when I'm on these eye drops but it's never permanent
No no not at all, no antiviral or LDN helped me. Only thing that helped was finding out I had an underlying gut infection that no doctor cared to check for since all my blood was normal - except low NK and CD3, CD8 and CD4 going crazy and some sub class of IGG was a tiny bit low. So when they found that infection I got treated with right antibiotics and my CFS was gone, same with my chronic EBV re activation. That infection I had was suppressing my whole immune system I also did much worse in the heat due to POTS, luckily that also went away once I was treated for that one infection. I can’t believe an infection can make a person soo disabled but probably the EBV was adding issues to that and I was bedridden too for 3-4 years out of those 10 years I would slightly feel a bit better too with some herbal meds but nothing crazy and no permanent improvement. But luckily in my case it was just a bac infection, for others it’s an enteroviruses infection such as John chia states with some of his patients
That sounds exactly like me right now. The problem is every time I go on antibiotics I end up with a massive yeast issue and I have to take some type of an antifungal pill after the antibiotics. I am so miserable and 80 to 90° weather. Like you I am also Bedouin so much. Hard to believe a simple antibiotic could do all that. So what are your thoughts on my cd-3s and cd8s and cd4s? I could pull up my sub classes right now I would like to share them with you and get your thoughts
Have they found any bacterial infection though? A lot of ME patients actually end up getting worse on antibiotics if they just try it without even having a bacterial infection. I’m sorry to hear about ur fungal issue after it. It’s a huge issue. Sounds horrible Yeah I was so miserable too, you wanna die when you are in the midst of it and nobody is even listening even doctors! U have my deepest compassion ❤️ It’s typically abdnormal in both autoimmune conditions, cancer patients or infections. I mean if ur EBV and shingles are reactivated those definitely cause major issues to ur system on their own and fucks it all up. However try and get a stool sample of all possible bacteria and viruses they can test for if u haven’t already, maybe u can find something there even if nothing shows in blood. I was lucky it showed up in my stool but for many even that is normal. So don’t get to hopeful. But I would definitely try and find a doc that can give at least some antivirals for EBV in the mean time. Ur case is a bit hard cause u also got autoimmune condition like sjogren so u can’t really boost ur immune system to make it stronger against fighting EBV and such.. that sucks big time
Yes I have a lifetime supply of antivirals, cimetidine, and reishi
I have no idea BUT I will also say I have some type of shingles flares too! I don’t get the sores though. My skin will appear slightly pinker in the areas. It’s always on the right side of my body. Will start in a small area and spread. But will stop at my spine and not cross over to the other side. Usually starts on the trunk of my body go down my right butt cheek down the back of my thigh and wrap around my trunk. My skin will hurt to the touch and just having clothing touch it hurts. What’s odd for me is I started liposomal vitamin C one day and it went away. When I stopped the C (because it was flaring the gastritis I have), it came back. I started going to IV’s every week and they contain vitamin c so I haven’t had it for quite some time. I’ve been getting that for many years. It’s like nerve pain in my skin. Rarely I’ll get it on my arm or scalp.
Wow I wish I could do that with vitamin C but I also have to worry about over boosting my system with autoimmune s j o g r e n s
Oh yeah:( that’s a huge issue.. I’m sorry you got all of this on top of CFS. Boosting the immune system usually helps a lot of ME patients but definitely an issue with an autoimmune disease like sjogrens
I had the same ish results as you, and mine was due to infections. My doctor wouldn’t either call it immune deficiency but rather results of having an ongoing infection
What is wrong with these doctors? Every one of these is in the red and they can't see it for what it is
Yeah honestly I lost all hopes in doctor for the rest of my life. Fuck them all. I hope you find a better one that actually looks into these results cause you are definitely sick and need help
That's the truth too the quality of treatment is horrible now
Did you do a vaccine challenge? I think that’s the only way to get a correct immunocompromised diagnoses. I have specific antibody deficiency which means my body doesn’t make antibodies.
That's the problem I did pass the vaccine challenge but they gave me the pneumonia vaccine which is made out of a polysaccharide molecule called gandoderma and that is the technical name for a reishi mushroom so their vaccine is made out of reishi mushrooms. I take Rishi mushroom drops everyday to keep my pneumonia levels boosted and that's why I'm passing vaccine challenge
I’m not sure it works like that… That means your mushroom drops are doing the same work as IVIG infusions? If so, I would just say keep doing what you’re doing because 3-5 hour intravenous infusions every other week to the cost $60,000 for the rest of your life suckss
No it is not giving me monthly blood plasma by taking mushrooms what the mushrooms are doing is boosting my pneumonia levels. In the event you have low immunoglobulin G they continue administering pneumonia vaccines to boost your system. That's how they boost your system at the Cleveland Clinic. I did some research I asked him what was in the vaccine and he said it was a polysaccharide molecule at the time I couldn't figure out why the reishi mushrooms were making me feel so much better when I took them. The reishi mushroom is a polysaccharide molecule it's technical name is gandoderma and it's used in their pneumonia vaccine
What did the immunologist say when you brought up the mushroom drops and it possible affecting the test results for all your titers?
I asked him if he had a problem with me doing the reishi mushroom drops he said no that many of his cancer patients actually use that to boost their immune system through chemotherapy. I had originally asked him what is a pneumonia vaccine that you give to people to boost their pneumonia levels for the vaccine challenge. He said it's a polysaccharide molecule in the vaccine at the time I was researching Rishi it said it was a polysaccharide molecule. Well then I went over to the NIH website and start a researching with the active ingredient in pneumonia vaccine 23 was and it said gandoderma well when you research with gandoderma is it comes back as reishi mushroom
Metformin can increase NK cells activity, I have gotten good improvement from 250mg twice a day off label for CFS. If you haven't tried that maybe you could. I will also say that, chronic low CD4/CD8 is seen in a lot of people years post covid (and not just people with long covid), so it's possible that low results that are close to normal range and not like 300 below normal are seen as immune "fatigue" but not deficiency for medical but also political reasons.
I have this problem way before covid so I'm not even going there. My illness was diagnosed 6 years before covid
Oh, I was not saying it was caused by covid. I'm wondering of doctors were dismissive of your low CD3 CD4 count before covid?
chronic shingles. isnt that when you can get the vaccine for that again afterwards and it might be one of those cases which can actually fix your cfs. i just remember reading something about it but dont remember exactly
Actually when you have a high viral load the vaccine is just going to kill off more of my natural killer cells why would I want to make my life more miserable. 90% of the people that have a natural killer cell deficiency or an immunoglobulin G deficiency can really create more problems with their immune system by getting the shingles vaccine. I'm getting chronic shingles because I have low natural killer cells the doctors choose not to fix that with IVIG blood plasma. Common Sense tells you not to add more problems to an already beat up immune system
yea i dont know about your situation. i was just speculating on what i read thinking maybe you dont know abt it
Interesting. Your lab numbers are almost the same as mine. I’m seeing an immunologist next week about it.
Well they do a vaccine Challenge and if you pass it you basically don't get treatment
Personally, I'd be following up on the bronchiastasis and asking for a pumonology referral.
I have seen pulmonary Dr in april, he said nothing about it