- Messages
- 88
Sorry if I missed it, did those treatments help?
Dont know what to do next after lot of treatments - every opinion is welcome! CFS/Inflammation
- Thread starter MartinK
- Start date
Sorry if I missed it, did those treatments help?
MartinK
Senior Member
- Messages
- 393
Hi Dyllan, Disulfaram treatments not worked for me :-/ Now I looking for some other treatments - FMT, IFN lambda and maybe some more.
MartinK
Senior Member
- Messages
- 393
A lot of time passed, I did some new testing:
*and write some ideas...
EBV DNA (PCR from saliva) 57700 < 3000 Ko/0,1ml .......now its active EBV probably clear :-((((
EBV VCA IgG-AK 501,0 < 20 E/ml
EBV EBNA IgG-Ak (EIA) 93,5 < 20 E/ml
HHV6 complete negative!
Antistreptokinase 640 < 640 IE/ml
Leptin 1,6 2 - 5,6 μg/l
Coeruloplasmin 0,20 0,2 - 0,6 g/l
SOD/Superoxiddismutase 336 164 - 240 U/ml ...go for more manganese, zinc and copper?
Selen (VB) 343,6 100 - 160 μg/l ......second time very high! anyone know how to low?
Nagalase-Aktivität 299,68 < 200 fmol/ml .......Im GcMAF candidate???
MIP-1 alpha 4 < 3 pg/ml
LBP - LPS bindendes Protein(S) 6,8 < 6 μg/ml
MIF Makrophagen-Migr. -Inhib. F. 2071 < 1000 pg/ml
TH17 inflammation and more inflammation markers negative
If I'm not mistaken, my condition looks more a more like a lot of evidence of systemic inflammation due to viruses and a bad GI!
because I was able to make some money, I am determined to do very soon:
- FMT from microbioma
- IFN lambda
It could make some things better I hope!
btw. Im after 1 round of Pfizer vaccine - 1 day hand pain and small fever, second day PEM, third day OK...not bad!
@Learner1
*and write some ideas...
EBV DNA (PCR from saliva) 57700 < 3000 Ko/0,1ml .......now its active EBV probably clear :-((((
EBV VCA IgG-AK 501,0 < 20 E/ml
EBV EBNA IgG-Ak (EIA) 93,5 < 20 E/ml
HHV6 complete negative!
Antistreptokinase 640 < 640 IE/ml
Leptin 1,6 2 - 5,6 μg/l
Coeruloplasmin 0,20 0,2 - 0,6 g/l
SOD/Superoxiddismutase 336 164 - 240 U/ml ...go for more manganese, zinc and copper?
Selen (VB) 343,6 100 - 160 μg/l ......second time very high! anyone know how to low?
Nagalase-Aktivität 299,68 < 200 fmol/ml .......Im GcMAF candidate???
MIP-1 alpha 4 < 3 pg/ml
LBP - LPS bindendes Protein(S) 6,8 < 6 μg/ml
MIF Makrophagen-Migr. -Inhib. F. 2071 < 1000 pg/ml
TH17 inflammation and more inflammation markers negative
If I'm not mistaken, my condition looks more a more like a lot of evidence of systemic inflammation due to viruses and a bad GI!
because I was able to make some money, I am determined to do very soon:
- FMT from microbioma
- IFN lambda
It could make some things better I hope!
btw. Im after 1 round of Pfizer vaccine - 1 day hand pain and small fever, second day PEM, third day OK...not bad!
@Learner1
aquariusgirl
Senior Member
- Messages
- 1,736
I took a ton of mitosyngergy copper and zinc ....It has seemed to help.....Acumen said I had issues with SODase.....I really want to try Sisei Mirei GcMaf but it's very strong..compared to the GcMaf Professor De Meirleir used to sell
Learner1
Senior Member
- Messages
- 6,324
- Location
- Pacific Northwest
It might be worth treating the EBV with valacyclovir - my doctors prescribed it at 3g a day. It would likely be helpful to support your immune function as well.
Good luck! Glad your shot went well!
MartinK
Senior Member
- Messages
- 393
ADDED TO PLAN!
I want to do Valacyclovir with IFN-lamdba ...what I read, looks like very, very synergic effect
And GcMAF with this tretment!
I hope it won't be my bankruptcy... :-/
btw. know anyone, if GcMAF from Saisei is best source at this moment?
I want to do Valacyclovir with IFN-lamdba ...what I read, looks like very, very synergic effect
And GcMAF with this tretment!
I hope it won't be my bankruptcy... :-/
btw. know anyone, if GcMAF from Saisei is best source at this moment?
aquariusgirl
Senior Member
- Messages
- 1,736
@MartinK I have hesitated to do saisei mirei injectable GcMaf cos it's so potent...way more than the injectable GcMaf Dr De Meirleir gave patients.
Love to hear your feedback if you try it.
Love to hear your feedback if you try it.
MartinK
Senior Member
- Messages
- 393
@aquariusgirl thx! You mean this? https://www.saisei-mirai.jp/gcmaf/2ng-generation-gcmaf-en/high-dose-gcmaf/
aquariusgirl
Senior Member
- Messages
- 1,736
yes
MartinK
Senior Member
- Messages
- 393
My last focus in finding an effective treatment is on viruses.
I'm honestly extremely confused whether the viruses are active in my case or not (the uncertainty is in EBV and VZV). According to some criteria yes, according to others no. Difficult to judge also in connection with my strangely functioning immunity.
I'm based on 16 times higher titers mentioned in @Hip roadmap and also from some studies which @Learner1 sent me. And for sure I also tried to find Lerner and Montoya criteria.
I also mentioned it in the @Pyrrhus thread about antivirals, but I don't want to spam him there about reading the results.
So… I decided to try Valacyclovir (1g 3x day) for 6 months + many antiviral herbs.
I tolerated it well, no side effects, liver tests perfectly fine. But this antiviral treatment did nothing for me.
See also the comparison of results before and after treatment:
10-2021
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)
4-2022
EBNA IgG 12.32 >> S/CO (0.00 - 0.50)
EBV VCA IgG 52.42 >> S/CO (0.00 - 0.75)
EBV VCA IgM 0.03 S/CO (0.00 - 0.50)
EBV EA IgG 5 U/mL (0 - 40)
*EBV blood PCR is always negative, but saliva PCR was high! Not I'm waiting for new result from re-test.
10-2021
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)
4-2022
VZV IgM 0.20 IP (0.00 - 0.99)
VZV IgG 1998.0 >> IU/L (0.0 - 150.0)
VZV IgA 0.11 IP (0.00 - 0.90)
*VZV blood PCR is always negative
Valtrex is either very ineffective or I really don't have a problem with these viruses.
But what worried me so much in recent blood tests is the idea of whether my antibodies are real and adequate, because my immunologist said I have "Polyclonal activation of the immune system".
She told me this based on antibody results after the 3rd covid vaccine (what makes me worse).
Look at the extreme result!
SARS-CoV-2 IgG S1 62505.1 >> AU/ml (0 – 14)
If I understand this well, it can be a clear indicator of my immune system is overactive / chronic active and it may be a sign of autoimmunity and it is necessary to calm him down.
I would like to discuss it, because "polyclonal activation of the immune system" is new is a new term for me.
I found in Google search rather "Polyclonal B cell response" - I need to find out more.
These are all possible reasons to try Rapamycin and Pentoxifylline. Maybe…
Now the immunologist has given me a short "shoot" of Methylprednisolone (Medrol) to calm my immunity, but I only managed it for a day, because it exhausted me and I felt like it was burning from the inside. The feeling of strong inflammation increased, so did the heat intolarance, perhaps it quickly subsides after discontinuation. Has anyone encountered this with these corticosteroids? It weird, because the effect should be the exact opposite!
I'm honestly extremely confused whether the viruses are active in my case or not (the uncertainty is in EBV and VZV). According to some criteria yes, according to others no. Difficult to judge also in connection with my strangely functioning immunity.
I'm based on 16 times higher titers mentioned in @Hip roadmap and also from some studies which @Learner1 sent me. And for sure I also tried to find Lerner and Montoya criteria.
I also mentioned it in the @Pyrrhus thread about antivirals, but I don't want to spam him there about reading the results.
So… I decided to try Valacyclovir (1g 3x day) for 6 months + many antiviral herbs.
I tolerated it well, no side effects, liver tests perfectly fine. But this antiviral treatment did nothing for me.
See also the comparison of results before and after treatment:
10-2021
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)
4-2022
EBNA IgG 12.32 >> S/CO (0.00 - 0.50)
EBV VCA IgG 52.42 >> S/CO (0.00 - 0.75)
EBV VCA IgM 0.03 S/CO (0.00 - 0.50)
EBV EA IgG 5 U/mL (0 - 40)
*EBV blood PCR is always negative, but saliva PCR was high! Not I'm waiting for new result from re-test.
10-2021
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)
4-2022
VZV IgM 0.20 IP (0.00 - 0.99)
VZV IgG 1998.0 >> IU/L (0.0 - 150.0)
VZV IgA 0.11 IP (0.00 - 0.90)
*VZV blood PCR is always negative
Valtrex is either very ineffective or I really don't have a problem with these viruses.
But what worried me so much in recent blood tests is the idea of whether my antibodies are real and adequate, because my immunologist said I have "Polyclonal activation of the immune system".
She told me this based on antibody results after the 3rd covid vaccine (what makes me worse).
Look at the extreme result!
SARS-CoV-2 IgG S1 62505.1 >> AU/ml (0 – 14)
If I understand this well, it can be a clear indicator of my immune system is overactive / chronic active and it may be a sign of autoimmunity and it is necessary to calm him down.
I would like to discuss it, because "polyclonal activation of the immune system" is new is a new term for me.
I found in Google search rather "Polyclonal B cell response" - I need to find out more.
These are all possible reasons to try Rapamycin and Pentoxifylline. Maybe…
Now the immunologist has given me a short "shoot" of Methylprednisolone (Medrol) to calm my immunity, but I only managed it for a day, because it exhausted me and I felt like it was burning from the inside. The feeling of strong inflammation increased, so did the heat intolarance, perhaps it quickly subsides after discontinuation. Has anyone encountered this with these corticosteroids? It weird, because the effect should be the exact opposite!
Learner1
Senior Member
- Messages
- 6,324
- Location
- Pacific Northwest
Different people have different responses to these antivirals. I know people for whom any one of valacyclovir, valganciclovir, or famciclovir has worked better than the 2 others. So, worth trying the others, at high dose.
Well, that tells you it's a problem....
It seems to be triggered by certain infections, and can cause various types of autoimmunity.
Did your doctor either look for the infection or the type of autoimmunity? Would treating the infection and then apharesis help? Or IVIG?
I know others who've reacted badly to corticosteroids. I'm not sure suppressing your immune system without finding and attacking the infection first is a good idea.
MartinK
Senior Member
- Messages
- 393
My new saliva PCRs results finally arrived! Look @Learner1 ...EBV (and in fact everything) is finally negative after 6 months of Valacyclovir.
Bad thing is, it doesn't change the fact that this treatment didn't help me.
this is translated comment from paper to english:
"The detection of herpesviruses in saliva (EBV, CMV, HSV1, HSV2, HHV6, VZV) is the most effective method to detect an active infection or the reactivation of a latent infection with herpesviruses. After the initial infection, the herpes viruses persist as a so-called latent infection for life, so antibodies of the IgG type can also be detected for life. A reactivation or partial reactivation cannot normally be derived from the anti-body pattern, at most from a clear increase in the titer over the course of the disease. The gold standard for the detection of a possible reactivation is therefore the direct detection by means of PCR in the saliva. Depending on the sensitivity of the method used and the extent(3 of the reactivation, EB viruses can also occasionally be detected in whole blood (possibly also HHV6) and are proof of a full lytic infection/reactivation. However, a negative result can indicate an intermediate form of reactivation or even the advanced stage of a primary infection cannot be ruled out with certainty
(Throat injection solution) is more sensitive and may be clinically more relevant. Relatively surprising is that this is not just EBV
(HHV6) but also applies to the other herpes viruses!"
@Learner1 IVIG is not possible for my common variable immunodeficiency diagnosis. Apheresis is maybe possible, but without insurance company help what I found.
Really hard to know with infections in my case now. All looks negative...also in comparsion with antibodies results.
Bad thing is, it doesn't change the fact that this treatment didn't help me.
this is translated comment from paper to english:
"The detection of herpesviruses in saliva (EBV, CMV, HSV1, HSV2, HHV6, VZV) is the most effective method to detect an active infection or the reactivation of a latent infection with herpesviruses. After the initial infection, the herpes viruses persist as a so-called latent infection for life, so antibodies of the IgG type can also be detected for life. A reactivation or partial reactivation cannot normally be derived from the anti-body pattern, at most from a clear increase in the titer over the course of the disease. The gold standard for the detection of a possible reactivation is therefore the direct detection by means of PCR in the saliva. Depending on the sensitivity of the method used and the extent(3 of the reactivation, EB viruses can also occasionally be detected in whole blood (possibly also HHV6) and are proof of a full lytic infection/reactivation. However, a negative result can indicate an intermediate form of reactivation or even the advanced stage of a primary infection cannot be ruled out with certainty
(Throat injection solution) is more sensitive and may be clinically more relevant. Relatively surprising is that this is not just EBV
(HHV6) but also applies to the other herpes viruses!"
@Learner1 IVIG is not possible for my common variable immunodeficiency diagnosis. Apheresis is maybe possible, but without insurance company help what I found.
Really hard to know with infections in my case now. All looks negative...also in comparsion with antibodies results.
Last edited:
MartinK
Senior Member
- Messages
- 393
Hi all, Im still very severe after 3rd round of Pfizer vaccine. Little bit better, yes, now able to go to toilet and make main hygiene only with small PEM. But Pregabalin PEM stops for me, thats good.
Im on Plaquenil now for "polyclonal immune system activation" and waiting for shipment with Rapamycin.
I'm really frustrated with testing to be honest. I no longer know what to believe about EBV - PCR was negative, my antibodies are high only in EBNA and VCA Igg (same values before and after 6 months on Valtrex). I have now tried EliSpot for EBV in Armin Labs - they tested Latent + Lytic form ...thats very interesting, because I dont see tis test much. Results are high, but Armin CEO told me, some Me/Cfs patients have sometimes 100+ (I have 43/25. See bellow:
Looks like Lyme is now little bit reactivated after 3rd round of vaccine. Same result shows Westen Blot.
Anyone here did DNA Connections Lyme panel? They tested many lyme strains + coinfections. I'm quite considering having everything checked. Who knows what else the vaccine has reactivated...
Fortunately, no reactivated virus for me, only the ambiguities surrounding EBV really bother me!
It really difficult choose righ treatment right now. But some stuff is on way... Hope it helps.
Im on Plaquenil now for "polyclonal immune system activation" and waiting for shipment with Rapamycin.
I'm really frustrated with testing to be honest. I no longer know what to believe about EBV - PCR was negative, my antibodies are high only in EBNA and VCA Igg (same values before and after 6 months on Valtrex). I have now tried EliSpot for EBV in Armin Labs - they tested Latent + Lytic form ...thats very interesting, because I dont see tis test much. Results are high, but Armin CEO told me, some Me/Cfs patients have sometimes 100+ (I have 43/25. See bellow:
Looks like Lyme is now little bit reactivated after 3rd round of vaccine. Same result shows Westen Blot.
Anyone here did DNA Connections Lyme panel? They tested many lyme strains + coinfections. I'm quite considering having everything checked. Who knows what else the vaccine has reactivated...
Fortunately, no reactivated virus for me, only the ambiguities surrounding EBV really bother me!
It really difficult choose righ treatment right now. But some stuff is on way... Hope it helps.
Last edited:
MartinK
Senior Member
- Messages
- 393
It seems that I should add to the title also: I do not know what happened :-/
Last week I had PEM from insomnia (Im one of those who need 8 or more hours of quality sleep, otherwise it cause PEM) and since then Im very, very inflammed - its crazy, because Im bedridden and now Im not able to lying on my back for more than an hour, because it really burns! I have to turn around after every hour and cool with cold towels. I also have the air conditioning on because my heat intolerance seems to have worsened.
I did not add any new drugs in last days. I'd rather stop everything and do some detox/liver support.
Any ideas? I hate these situations when it gets worse.
Last week I had PEM from insomnia (Im one of those who need 8 or more hours of quality sleep, otherwise it cause PEM) and since then Im very, very inflammed - its crazy, because Im bedridden and now Im not able to lying on my back for more than an hour, because it really burns! I have to turn around after every hour and cool with cold towels. I also have the air conditioning on because my heat intolerance seems to have worsened.
I did not add any new drugs in last days. I'd rather stop everything and do some detox/liver support.
Any ideas? I hate these situations when it gets worse.
vision blue
Senior Member
- Messages
- 2,000
On the burning- how about going back on gabapentin for a while? Maybe its hypersensitive nerves? Possibly from rebound or who knows what.
I still need to read thru the rest of your thread
Also sent you a PM
:Update: The increase in igg for zoster between october and april is dranatic.
Sone possibilities are the first vax triggered zoster reactivation- this is a k own risk of the vax, especially among rhuematolghy patients. Its pissibke taking valtrex meant you didnt even notice a reinfecttiob. Another possibility is vax 1 already supercharged tour immune system and caused it to increase your antibodies to everything your body has ever seeen
But also, do you trust the lab? re you going to a converntional lab for antibodies? If not, try a conventional one.
Ive never had saliva test for herpes viruses, pcr or otherwise, m; wil look in to it Getting closer to some igenex tests for lyme and co infections but on urine because its too hard for me right now to. Manage any bloodtrsts.
I still need to read thru the rest of your thread
Also sent you a PM
:Update: The increase in igg for zoster between october and april is dranatic.
Sone possibilities are the first vax triggered zoster reactivation- this is a k own risk of the vax, especially among rhuematolghy patients. Its pissibke taking valtrex meant you didnt even notice a reinfecttiob. Another possibility is vax 1 already supercharged tour immune system and caused it to increase your antibodies to everything your body has ever seeen
But also, do you trust the lab? re you going to a converntional lab for antibodies? If not, try a conventional one.
Ive never had saliva test for herpes viruses, pcr or otherwise, m; wil look in to it Getting closer to some igenex tests for lyme and co infections but on urine because its too hard for me right now to. Manage any bloodtrsts.
Last edited:
MartinK
Senior Member
- Messages
- 393
@vision blue Hi, thanks for your opinion!
Im most interested into this part:
That's exactly what my immunologist thinks! She is concerned that it is now impossible to determine exactly if I have reactivations or not. Therefore, she wants to stop the immune system overreaction first - and that seems quite reasonable to me. This is also why I tried hard to get Rapamycin.
I trust the lab my immunologist use. But now I do some more testing on my own in one German lab and also Tickplex Plus kit is on way to me.
We'll see if everything confirms.
To be honest - I'm already tired of testing for pathogens when see how my immune system behaves!
Im most interested into this part:
That's exactly what my immunologist thinks! She is concerned that it is now impossible to determine exactly if I have reactivations or not. Therefore, she wants to stop the immune system overreaction first - and that seems quite reasonable to me. This is also why I tried hard to get Rapamycin.
I trust the lab my immunologist use. But now I do some more testing on my own in one German lab and also Tickplex Plus kit is on way to me.
We'll see if everything confirms.
To be honest - I'm already tired of testing for pathogens when see how my immune system behaves!
MartinK
Senior Member
- Messages
- 393
The capture shows the same bacteria as before, but in larger quantities, so I believe it's fairly accurate.
If I see and understand right:
- yellow CLED medium is non-selective, it is not possible to judge exactly what was caught there.
- MacConkey medium 100% shows Enterococcus spp (so it's probably the same at CLED)
- another Enterococcus spp confirmation is on a specific green Enterococcus agar
Now I want to finally start to solve it somehow. I seem to understand that this is not a very small catch! Could any online vaccine available help? @Cipher
godlovesatrier
Senior Member
- Messages
- 2,628
- Location
- United Kingdom
Valtrex would work.