My chronically elevated EBV antibodies

[ljimbo423]

Hi @Learner1 - Please don't take the info I'm presenting here as a criticism. I'm just doing what I can to pass along information, the rest is up to the reader. I do the best I can to respect people's choices on how they treat their cfs/me.

 

[halcyon]

Dr. Robert Naviaux, a cfs/me researcher who just recently put out a paper on cfs/me metabolomics, but also has a deep understanding of virology says this about viral reactivation and testing-

I'd would argue that he does not have such a deep understanding based on this incorrect statement:

While Coxsackie is an RNA virus related to poliovirus, antibody titers can increase to this virus too, even though it cannot establish a chronic or latent infection.

 

[ljimbo423]

Hello @halcyon - Like so many things about cfs/me, (and life in general) it's not black or white, it's a matter of who or what you choose to believe.

I wish it were different and we had a clearer understanding of the primary cause and pathology of cfs/me but researchers aren't there yet.

Until then, I believe, we have to choose our own path of healing, based on what we think is best for ourselves, as individuals.

Jim

 

[Tammy]

Hi @Tammy - Congrats on your improvement! It feels good to feel good! I think immune system dysfunction is a major cause of symptoms. Dr. Naviaux mentions immune system dysfunction above.

Is it not possible that the herbs and supplements that you are taking, are helping to modulate an immune system imbalance, not related to EBV and therefore improving your health?

No...............I do not believe so. The EBV is what is knocking down the whole system. (just my opinion). The EBV neurotoxins can cause all sorts of problems/damage. I should add.........for the last 18 plus years...........I have tried 1,001 different things to help my immune system..........to no avail. In my opinion...........you have to go after the virus as well. I will also add.............that I think other viruses in the herpetic family can also be involved.

Thank you for the congrats!

 

[Tammy]

Would you mind stating which herbal antivirals you're using?

My CFS hit a couple months following mono so I think it's worth a shot trying herbal antivirals.

There are a number of herbal anti-virals.............but mostly I took Cats Claw,(strong anti-viral!) Licorice root, L-lysine for the first year and a half as far as anti-virals go. I then added in Lemon balm and Olive leaf and would rotate. My protocol though is much more involved with other supplements as well as diet.(some foods are fuel for viruses as well as bacteria. Zinc sulfate and B12 (methyl and adeno) critical. You can PM me if you would like for more details.

 

[heapsreal]

I think this thread is a good example that medicine cant really diagnose a chronic or active infection accurately.

 

[Wonkmonk]

Hi Please don't take the info I'm presenting here as a criticism.:) I'm just doing what I can to pass along information, the rest is up to the reader. I do the best I can to respect people's choices on how they treat their cfs/me.

Please continue to do so, it's a good thing to approach the problem from all possible angles!

If you have all the information, you can make a better informed decision. It may be a bit more complicated, but that's clearly better than perhaps otherwise missing an important part of the puzzle.

 

[Wonkmonk]

The EBV is what is knocking down the whole system. (just my opinion). The EBV neurotoxins can cause all sorts of problems/damage. I think other viruses in the herpetic family can also be involved.

I believe so, too. In my case, I have slightly elevated EBV-EA (above norm), but I suspect my illness may be caused by HSV-1 (super high IgG titer of 1:32,000). I also don't have all the symptoms Dr Lerner mentions, e.g. I don't have tachycardia at rest, I have bradycardia (57 bpm, Holter monitor going down as far as 40 bpm during the night). That's what professional bikers have, LOL.

May I ask if you tried antiviral medications (e.g. Valacyclovir) in addition to the natural remedies?

 

[Learner1]

Hi @Learner1 - Please don't take the info I'm presenting here as a criticism. I'm just doing what I can to pass along information, the rest is up to the reader. I do the best I can to respect people's choices on how they treat their cfs/me.

Thanks for sharing. Its important to get different ideas on the table. We all have such a wealth of knowledge and different doctors
...
I certainly wouldn't be on the path I'm on without the info I've learned from others here, some of which turned what I knew on end at the time.

I've found we can't make good choices about getting well without accurate information.

Having been dismissed, yelled at, and fired by doctors who spouted out if date dogma, wouldn't/couldn't read my labs properly, who sent me off to useless specialists and didn't know what to do, offering me psychotherapy as an answer, only to find I have a dysfunctional immune system and 6 serious infections, I've become skeptical of mainstream medical knowledge.

Most doctors are operating on 15 year old information, which isn't good enough here. The knowledge that's helping me comes from studies done in the past 13 years, even in the last 1-3 years, which most doctors won't have known about.

So, the game is to get up to date, accurate info and act on it to increase our chances of success.

 

[Learner1]

I believe so, too. In my case, I have slightly elevated EBV-EA (above norm), but I suspect my illness may be caused by HSV-1 (super high IgG titer of 1:32,000). I also don't have all the symptoms Dr Lerner mentions, e.g. I don't have tachycardia at rest, I have bradycardia (57 bpm, Holter monitor going down as far as 40 bpm during the night). That's what professional bikers have, LOL.

May I ask if you tried antiviral medications (e.g. Valacyclovir) in addition to the natural remedies?

Like @Tammy it would be wise to look for other herpes family viruses, as different things might work.

I've been on Samento, Banderol, Berberine, and Burbur, in addition to high dose vitamin C and artesunate IVs and artemisinin suppositories. And methylation, amino acid, and mitochondrial nutrient protocols And a bunch of Th1/Th2 shifting stuff. And UVBI and HBOT.

All of this has kept me functioning, but it hasn't cured me. I'm sleeping less, have less brain fog, better cognitive function, but I still crash, have PEM, and function at 60% of normal.

Like @Tammy, I think that my previously hidden EBV is a huge problem, as well as chlamydia pneumoniae, a nasty bug that sucks up massive quantities of B12 and B6.

Its become clear that bigger guns are necessary. I started on valganciclovir and an getting IV doxycycline/rifampin/azithromycin and will be getting IVIG as soon as its approved. My doctor dropped the botanicals and is keeping me on the nutrients to support and repair mitochondria.

 

[Jonathan Edwards]

Sorry, I didn't mention before, Dr Lerner refers to elevated EBV-EA antibodies, so as I take it there is no contradiction with the CDC. There may be some EA antibodies in healthy people, but if they are elevated (don't remember Dr Lerner's threshold sadly) and PCR tests detect no viral DNA and there is CFS-like disease, it could be a smoking gun.

As I understand the CDC, 20% of healthy people continue to have detectable EA antibodies, but they may not necessarily elevated.

Yes, they are 'elevated'. The 20% have high levels - which is the same as elevated in this context. High antibody levels are not a useful sign of continuing active infection. We all carry EBV but there is little or no evidence it causes any problems.

 

[Jonathan Edwards]

Most doctors are operating on 15 year old information, which isn't good enough here. The knowledge that's helping me comes from studies done in the past 13 years, even in the last 1-3 years, which most doctors won't have known about.

Can you give Pubmed references for those studies? I have been following the research into ME/CFS closely and am not aware of anything that has changed the situation.

 

[Wonkmonk]

Yes, they are 'elevated'. The 20% have high levels - which is the same as elevated in this context. High antibody levels are not a useful sign of continuing active infection.

What do you think about Lerner's theory of non-lytic replication, i.e. EBV (or other Herpes virus) not producing fully functional copies that PCR could detect, but only early gene products which are then wreaking havoc in the system?

Maybe those 20% have CFS to varying degrees (in many cases probably subclinical or symptomless)

 

[Wonkmonk]

Like I think that my previously hidden EBV is a huge problem, as well as chlamydia pneumoniae, a nasty bug that sucks up massive quantities of B12 and B6.

Its become clear that bigger guns are necessary. I started on valganciclovir and an getting IV doxycycline/rifampin/azithromycin and will be getting IVIG as soon as its approved.

Of couse I don't want to interfere with your doctor's protocol, but ValGANcyclovir isn't very effective against EBV. It's actually for CMV and HHV6.

Regarding the bacteria, I think it's a good idea to treat them first before starting antiviral treatment. Dr Lerner says that bacterial co-infections can interfere with antiviral treatment, esp. Borrelia burgdorferi, babesia microtii, anaplasma phagocytophila, mycoplasma pneumoniae and streptococci (anti-streptolysin O). Esp. the first 3 make sense if you remember having had a tick bite. Did you check any of those? If you have them, your antibiotic protocol might kill off some of those but perhaps not all so it might be still make sense to check.

I highly recommend reading this:

[url]http://www.treatmentcenterforcfs.com/documents/MECFSTreatmentResourceGuideforPractitioners.pdf[/url]

 

[Wonkmonk]

@Learner1 Oh, and what I also find surprising is that if I understand correctly you are using Rifampicin and ValGANcyclovir at the same time. I only know they are both liver toxic so I thought that should be avoided.

Dr Lerner recomments ValAcyclovir, which has proven efficacy against EBV and is not liver toxic. He usese ValGANcyclovir only for CMV and HHV6 and he does the antibiotics first and only then starts with antivirals.

 

[Tammy]

May I ask if you tried antiviral medications (e.g. Valacyclovir) in addition to the natural remedies?

No I havn't.

 

[Wonkmonk]

Couldn't that be an option that might produce even better results? Any specific reason why you didn't try?

 

[Tammy]

Couldn't that be an option that might produce even better results? Any specific reason why you didn't try?

It's an option yes................well actually I don't know if it is or not............I've never talked to my Dr. about it..............don't know if she would prescribe or not. I'd rather start out with natural before prescription............just a personal choice. (feels safer for me). If the herbals weren't working for me..............I would consider the other.

 

[Jonathan Edwards]

What do you think about Lerner's theory of non-lytic replication, i.e. EBV (or other Herpes virus) not producing fully functional copies that PCR could detect, but only early gene products which are then wreaking havoc in the system?

Maybe those 20% have CFS to varying degrees (in many cases probably subclinical or symptomless)

I think Dr Lerner's theory makes no scientific sense and is supported by no data. I looked at the publications where he puts it forward and I could not find any coherent argument.

There is no way that 20% of the population have 'a bit of CFS'. The prevalence of CFS is about 0.2% (a hundred times less) and it is something vague. Moreover, subclinical CFS makes no sense because it is defined clinically. It is a bit like saying someone with normal blood pressure has subclinical hypertension. Viral studies have shown no increase in evidence of herpes viruses in CFS patients at all. If there was a link at least some slight difference ought to be apparent.

 

[jimells]

Can you give Pubmed references for those studies? I have been following the research into ME/CFS closely and am not aware of anything that has changed the situation.

Afrin 2016: Often seen, rarely recognized: mast cell activation disease--a guide to diagnosis and therapeutic options.

Shibao 2005: Hyperadrenergic postural tachycardia syndrome in mast cell activation disorders.

Wouters 2016: The role of mast cells in functional GI disorders.

Nguyen 2016: Novel characterisation of mast cell phenotypes from peripheral blood mononuclear cells in chronic fatigue syndrome/myalgic encephalomyelitis patients.

We report significant increase of naïve MCs in moderate and severe CFS/ME patients compared with healthy controls.

Moreover, a significant increase in CD40 ligand and MHC-II receptors on differentiated mast cells in severe CFS/ME patients. Peripheral MCs may be present in CFS/ME pathology however, further investigation to determine their role is required.

Theoharides 2005: Chronic fatigue syndrome, mast cells, and tricyclic antidepressants

We hypothesize that corticotropin-releasing hormone (CRH) and other related peptides secreted by acute stress, activate diencephalic mast cells, either directly or through neurotensin (NT), leading to the release of proinflammatory cytokines that contribute to CFS pathogenesis.

Mast cells and their mediators have been implicated in diseases that are comorbid with CFS; in fact, there may be altered mast cell function in some tissues of CFS patients. Mast cells can be activated by stress hormones, such as CRH, and neuropeptides, such as NT.

These studies have helped me to understand that mast cell activation could play an important role in almost all of my symptoms, except for the inability to sustain activity. They suggest that mast cells can be a treatment target to ease those symptoms.

The idea that mast cells are causing secondary symptoms for a subgroup of ME patients dovetails nicely with Dr Naviaux's Cell Danger Response hypothesis, since mast cells can be activated by extracellular ATP. (See Extracellular ATP mediates mast cell-dependent intestinal inflammation through P2X7 purinoceptors.)

And by treating those mast cells with zyrtec, I was able to stop a very bad relapse. I no longer experience frequent itching or hyperadrenergic POTS crashes. IBS symptoms may be improved. I no longer wake up with night sweats or have a daily "hot flash" one hour after getting up in the morning.

I still have severe limitations, but I haven't been back to the Emergency Room since mid April - a most welcome development! Yes I understand that perhaps the rapidly worsening relapse could have suddenly stopped anyway. But I seriously doubt that is the case.

I brought some of these papers (not just the abstract) to my current primary care provider, and I know he read the Afrin 2016 paper. He understands I have a physiologic illness. So far, he has taken no action or proposed any testing or treatment based on any of this research. So I still have to be my own doctor, which obviously I am not qualified to be.

He told me that since I don't have the mast cell hallmark symptom of hives, I can't get a referral to a mast cell specialist. He brought up the fact that only half of mast cell patients have hives (Afrin 2016) and said that fact doesn't matter - only the (inadequate) guidelines.