Anyone heard of this EBV treatment and DR??

[heapsreal]

Her website below. Has anyone heard if this Dr and her treatment??
The utube video is 3yrs old. I'm guessing if it was a game changer we would all know about it by now or it's priced out of everyone's range??
https://vvsmd.com/

 

[Bufeyberry]

Interesting. This link seems to explain some of the content in her videos. https://sponauglewellness.com/sot-therapy/

I can imagine that these type treatments, and the tests & procedures required to create them, would be very pricey. If they worked though, needless to say, it would be worth any amount of money. I believe the hypothesis on Inactinate Shunt makes a lot of sense. I feel like some cells being affected makes sense. The thought process of, which different cells affected equals which symptoms are felt, and to varying degrees- just all makes sense to me. Whether there’s a viral trigger or not, I feel like the innate immune system is involved. It’s all very much over my head, but it seems that a treatment like this would make sense, for the Inactinate Shunt hypothesis. Thanks for sharing.

 

[Hip]

When I searched for studies showing the effectiveness of supportive oligonucleotide therapy (SOT), which is also called antisense oligonucleotide therapy (ASOT), against viruses I could not find anything.

This paper says:

preliminary results indicate that antisense SOT therapy can be considered a potential treatment for viral as well as Lyme diseases

Which means it might work, but also might not work.

 

[Bufeyberry]

I wonder if there’s any trials for it. Maybe some in the works. I feel like we are on the verge of something, but maybe I’m just telling myself that to hang onto hope. I can only begin to imagine how the people feel who have suffered way longer than I have. I’ve been fighting this type thing for over a decade, but only a few years of being homebound and now that I’ve been bedridden for a long time, it’s so awful. If research had been ongoing, I think there would be at least decent treatments by now. Now that the socioeconomic needle has been moved enough to cause alarm, perhaps there is hope. Very sad it’s come to this.

 

[heapsreal]

When I searched for studies showing the effectiveness of supportive oligonucleotide therapy (SOT), which is also called antisense oligonucleotide therapy (ASOT), against viruses I could not find anything.

This paper says:


Which means it might work, but also might not work.

I think in the video she mentions effective for ebv for atleast upto 18months, so if effective it would still be ongoing treatment and probably costly????
Alot of ifs.

 

[Bufeyberry]

Yes I agree. There are many diseases that require ongoing treatments. I have CIDP and I’m currently struggling to receive the IVIG infusions at home and in a manner that my body can handle. It was never an issue before because I was able to be taken to inpatient visits to have Nerve conduction studies performed to see my status and to prove that IVIG is beneficial. Now I have to spend a lot of time trying to get my neurologist to understand ME. I’ve sent links to all info to help guide her and her team, but even though these tools are readily available, she wants to speak to a specialist in ME. My PCP is doing his very best to treat my severe ME symptoms. Now it’s difficult to treat my coexisting health issues because I am bedridden and can hardly function. If I go through a trip to see my neurologist for in person testing, I am very frightened I will progress to very severe. So it is definitely not lost on me that treatments are much more difficult to manage than a cure. This is the entire issue the way I see it anyway. Each individual has their own set of symptoms. I feel like treatments or even possible cures will have to be highly individualized, based upon which areas of one’s body are being affects, and causing their specific symptoms. With that being said- I’ll take an approved or even off label treatment, that insurance pays for any day over what I have now, which is no treatment at all. So I guess I’m using the term treatment loosely. There’s a big difference between treating the symptoms and receiving a therapeutic treatment that’s actually proven to be beneficial in fighting the root cause of the symptoms. Your point of the expense for unproven treatments is very important, I agree. Those suffering usually either lose insurance benefits or are at the mercy of insurance dictated care. It’s just a terrible situation no matter how we look at it. I just pray that there is a breakthrough that helps all of us- even if it comes in the form of a treatment and not a total cure.

 

[Tammy]

I briefly checked on reddit some comments about SOT for Lyme and/or EBV. Like many other treatments, some people had good results and even remission. Others felt worse.....................and the rest didn't have anything happen good or bad. So in a nut shell, the results were mixed. I did get the impression also from the comments that the therapy was indeed pricey. I even joined one of the recommended support groups for SOT just to see people's comments but havn't been accepted yet.

 

[Bufeyberry]

Did any of them say whether their insurance covered it or not? Most likely not, but just curious. Thanks for the effort and info.

 

[Tammy]

Did any of them say whether their insurance covered it or not?

I didn't get the impression that insurance covered it, but like I said it was a brief search. If they ever accept me into the main SOC fb support group, I'm sure I can find out more.

 

[Bufeyberry]

Ok thanks again.

 

[Tammy]

For any interested in people's results with SOT there is a FB group called S.O.T. for Lyme, EBV and Co-infections.

@Bufeyberry, I finally got accepted into the group and did a search for Insurance. I didn't look through all the comments but from the comments I did come across there was only one person that said they got reimbursed for some of the therapy. I didn't look through all the comments of course as the group has been established for some time.

 

[Bufeyberry]

Well thank u for letting me know. I definitely can’t pay outa pocket. Wish I could. Wish we all could try something. I could almost handle all the other symptoms, but the pain is just relentless. The crippling fatigue is horrible too, but if I dad to choose which one I could subtract, I think it would have to be the pain. Do you have a lot of pain with yours?

 

[lenora]

Hi @Bufeyberry. Have you been tried on gabapentin for your pain? It takes time to adjust to, in my case it was about 3 mos. and I totally lost my memory in that time. Still it worked and yes, it does have side-effects, but most will pass.

Today, many years later I'm on one of its children, lyrica, and have also found help with it. I may have to increase the dosage b/c of seriously increased pain from breaking my pelvis in a few places about a year or more ago. Still, we'll see.

When it first came out (I was in one of the earliest trials), the dosages were not known. Thus, many of us were given too much of the drug. It's different today. Before that, there was absolutely nothing for nerve pain due to FM....well, except ice. I still use ice when things are especially bad. It can completely numb a painful area for an extended period of time. I'm sure you know that it shouldn't be on more than 20 min. at a time.

Ace makes great fabric covered packs of all sizes. Just toss them in the freezer and they won't free as hard as normal ice, but I wrap mine in light linen and even lay directly on it.....the spinal column from the neck on down. Some people find heat better, but most people find that just tightens an area and makes the pain worse. It's great for abdominal pain, though. I hope you suffer less pain until something else comes along. Feel better.....Yours, Lenora

 

[Garz]

for anyone who is not aware - antibodies are well documented to be cross reactive between EBV ( and other herpes family viruses ) and the bacteria that causes Lyme disease -

in fact cross reactivity exists between a number of different organisms - esp those bacteria in the alpha proteobacteria family and things like toxoplasma( a common protozoan infection) - so it could well be that any organism capable of causing chronic infection may also have the ability to cause the body to spit out cross reactive antibodies. making serology severely flawed for diagnosis of chronic infections.

as a result its not normally possible to distinguish whether a person has active EBV or Lyme disease from serologic testing. sadly few practitioners seem to be aware of this fact.

in the lyme disease community we see quite a lot of people convinced they have active EBV driving symptoms because they are unaware of the above, have high titres of EBV related antibodies on serologic blood tests along with neurological symptoms.

some have spent years treating it with antivirals. But 9 times out of 10 when these people take PCR based tests that should easily be able to detect EBV that is actively replicating in their bodies - these tests are negative - making a false EBV serologic result due to chronic Lyme disease, which is also famous for its high prevalence of neurologic effects, the likely explanation.

i don't know much about SOT for Lyme - its one of the lesser known therapies - with relatively little established research behind it i think. i have seem some people swear by it as a complete cure, but i have also seen people recover spontaneously when their immune system finally got the better of lyme. so it could also be a case of association is not causation.

 

[lenora]

She's not accepting new patients anyway. It would be good to chat with some of the older ones. Yours, L.

 

[heapsreal]

for anyone who is not aware - antibodies are well documented to be cross reactive between EBV ( and other herpes family viruses ) and the bacteria that causes Lyme disease -

in fact cross reactivity exists between a number of different organisms - esp those bacteria in the alpha proteobacteria family and things like toxoplasma( a common protozoan infection) - so it could well be that any organism capable of causing chronic infection may also have the ability to cause the body to spit out cross reactive antibodies. making serology severely flawed for diagnosis of chronic infections.

as a result its not normally possible to distinguish whether a person has active EBV or Lyme disease from serologic testing. sadly few practitioners seem to be aware of this fact.

in the lyme disease community we see quite a lot of people convinced they have active EBV driving symptoms because they are unaware of the above, have high titres of EBV related antibodies on serologic blood tests along with neurological symptoms.

some have spent years treating it with antivirals. But 9 times out of 10 when these people take PCR based tests that should easily be able to detect EBV that is actively replicating in their bodies - these tests are negative - making a false EBV serologic result due to chronic Lyme disease, which is also famous for its high prevalence of neurologic effects, the likely explanation.

i don't know much about SOT for Lyme - its one of the lesser known therapies - with relatively little established research behind it i think. i have seem some people swear by it as a complete cure, but i have also seen people recover spontaneously when their immune system finally got the better of lyme. so it could also be a case of association is not causation.

I think what makes viral cause of cfs and lyme disease so controversial is the testing for both is quite poor and the symptoms overlap alot. Plus the longer one is ill with either, the more infections one can get from immune suppression. Lyme coinfections like mycoplasma are present in alot of cfs pts and for some the sole cause of cfs.

I think the only way to know is through trial and error. Myself there's a definite improvement with antivirals and further improvement with antibiotics/herbal and pharma, for lyme and coinfections, which I can't sustain for long when I stop these. Plus being in Australia, lyme doesn't exist???? Although many have sent blood overseas for testing and been positive and they have never left the country.

There seems to be some reasonable research showing a few herbs that are effective against lyme in its different stages as well as its coinfections, so its easier and potentially safer to try and self treat these things or find a naturopath. Herbs like cryptolepis and Japanese knotweed seem to have a broad range of effect and artemesia appears to have antibacterial and some antiviral effects. And there's a few substances like Serrapeptase that can be used to treat biofilms involved in bacterial infections that have be known to make bacteria resistant to antibiotics.

So someone could do a trial of herbs for lyme and see how they respond and if it's worth pursuing or not. The only issue I see is if you have a viral issue like ebv/cmv, you may not notice improvement from treating lyme and vice versa, not until both are treated at the same time. Some people I think are going to find that treatment is going to be ongoing to maintain any improvement or the backslide. If there's an infectious cause of their cfs??

 

[Garz]

I think what makes viral cause of cfs and lyme disease so controversial is the testing for both is quite poor and the symptoms overlap alot. Plus the longer one is ill with either, the more infections one can get from immune suppression. Lyme coinfections like mycoplasma are present in alot of cfs pts and for some the sole cause of cfs.

...

i agree with a lot of this

but in my personal opinion there is an over emphasis on viral causes of CFS/ME in the CFS patient population - because of historical associations between viruses and CFS/ME and the lack of understanding of or belief in chronic bacterial infections in the medical community.

i do think immune suppression is part of the picture - and believe this is the main cause of viral reactivation - of things like EBV, CMV etc - when they are present ( and not a false positive due to cross reactivity as described above ) - and i put Mycoplasma in the same category - another common infection our bodies are normally able to deal with just fine - like all of these common viruses- unless there is something else in the way dysregulating and suppressing our immune system.
so i would frame real reactivated childhood viruses as a symptom, not a cause

likewise - a person who's immune system is coping with its current load of bacteria and viruses might have a collapse of immune function after another stressor - like acute virus infection - is added into the mix - and i think this likely explains the sudden onset of CFS after viral infections.
similar things are documented in cases of physical trauma or surgery or emotional trauma
all stressors to the immune system
and again adding to the idea the the virus is the cause - but in reality its more likely just the last straw that breaks the camels back

ref herbal lyme / chronic bacterial treatments - i have tried these myself over the course of the last 3years or so
the largely anti-inflammatory and immune regulating herbs described by Buhner - knotweed, cats claw, cordyceps etc were helpful to me - but not curative

similarly - the strong anti bacterial herbs like crypolepis also helped me - but also caused powerful reactions - so i had to start on low doses and step up very gradually -
i took a combination of cryptolepis, sida acuta, alchornea, houtuynia, teasel, berberis - all at around max suggested doses in tincture form - as per buhners books
but again - while these helped me get to near 50% recovered - when combined with the anti-inflammatory herbs and diet and lifestyle changes, exercise, sleep, etc it was still not enough to resolve the symptoms all together.
so while there is good scientific in vitro work backing up their effect at high concentration in vitro - in practice i do not think these herbs on their own are strong enough to treat most people successfully when taken orally - even in tincture form ( i really hoped they would be and stuck at them for 2 years at max doses but plateaued - so i just don't think they are enough on their own)

they clearly help though - so i think they have their place - and i think they helped me get to a place where i was better able to function and better able to tolerate further treatment - and they can be combined with pharma antibiotics - so no reason not to use them.

i am also in favour of fibrinolytic enzymes like bromelain, serrapeptase and lumbrokinase - these are known to increase the effectiveness of antimicrobials significantly and help break down both excess fibrin driven by inflammation / infection and microbial biofilms to some degree.
these drive significant reactions for me - when taken alongside antimicrobials

its a big commitment - some people feel there must be a quick fix and hold out for miracle cures - however, the reality seems to be that it just takes a lot of effort to turn this around when you have been sick for years - and for me its paying off

 

[heapsreal]

ref herbal lyme / chronic bacterial treatments - i have tried these myself over the course of the last 3years or so
the largely anti-inflammatory and immune regulating herbs described by Buhner - knotweed, cats claw, cordyceps etc were helpful to me - but not curative

similarly - the strong anti bacterial herbs like crypolepis also helped me - but also caused powerful reactions - so i had to start on low doses and step up very gradually -
i took a combination of cryptolepis, sida acuta, alchornea, houtuynia, teasel, berberis - all at around max suggested doses in tincture form - as per buhners books
but again - while these helped me get to near 50% recovered - when combined with the anti-inflammatory herbs and diet and lifestyle changes, exercise, sleep, etc it was still not enough to resolve the symptoms all together.
so while there is good scientific in vitro work backing up their effect at high concentration in vitro - in practice i do not think these herbs on their own are strong enough to treat most people successfully when taken orally - even in tincture form ( i really hoped they would be and stuck at them for 2 years at max doses but plateaued - so i just don't think they are enough on their own)

they clearly help though - so i think they have their place - and i think they helped me get to a place where i was better able to function and better able to tolerate further treatment - and they can be combined with pharma antibiotics - so no reason not to use them.

i am also in favour of fibrinolytic enzymes like bromelain, serrapeptase and lumbrokinase - these are known to increase the effectiveness of antimicrobials significantly and help break down both excess fibrin driven by inflammation / infection and microbial biofilms to some degree.
these drive significant reactions for me - when taken alongside antimicrobials

its a big commitment - some people feel there must be a quick fix and hold out for miracle cures - however, the reality seems to be that it just takes a lot of effort to turn this around when you have been sick for years - and for me its paying off

I agree that the herbs have their place and majority need pharma meds to get on top of things. I think where the herbal treatments have their place is for long term use as there's a considerable number of people that will need life long treatment and some herbs will be much saver and can help keep someone in remission once they have gone through the more extensive treatment with pharma meds.

Plus I think sometimes a treatment trial can be more effective than actual testing. If someone did say cryptolepis and artemesia and had a herx reaction or just felt better after a month, this might be a better indicator of a chronic infection than using the unreliable tests. And someone could do this on their own as well.

 

[Garz]

yes - i think "therapeutic trials" can be very helpful in understanding if an infection is present

the only issue is that the herbs are generally very broad in their action - and so - even if you have a reaction - eg feel worse then better - its is hard to tell from that which organisms you are dealing with
for example artemisinin and Cryptolepis are both active for Borrelia, Bartonella and Babesia.

finding which infection/infections one is dealing with is usually important for guiding treatment - as different drugs may be needed for different infections - but there is a great deal of symptoms overlap and one infection may even obscure another - for example - someone with Babesia and bartonella may not have fevers - because bartonella tends to suppress fevers.

because of this some well known LLMDs treat for all 3 main infections - regardless of test results

in the |USA Babesia has high prevalence in tested ticks and patients - so this makes sense
in other countries ( i am in the UK ) the official incidence of babesia is minute numbers per year - and so it seems less like a sound assumption
however its hard to know if babesia is really rare in the wild in the UK - or just not studied or reported.
(there are studies showing its presence in small areas in the Scottish highlands in sheep and deer - and in some southern counties in dogs)

this is my biggest quandary at the moment - bartonella is definitive ( microscopy) lyme is highly probable ( IgM and IgG positive to B. Garinii ) - babesia - uncertain - some suggestive items on microscopy

 

[heapsreal]

yes - i think "therapeutic trials" can be very helpful in understanding if an infection is present

the only issue is that the herbs are generally very broad in their action - and so - even if you have a reaction - eg feel worse then better - its is hard to tell from that which organisms you are dealing with
for example artemisinin and Cryptolepis are both active for Borrelia, Bartonella and Babesia.

finding which infection/infections one is dealing with is usually important for guiding treatment - as different drugs may be needed for different infections - but there is a great deal of symptoms overlap and one infection may even obscure another - for example - someone with Babesia and bartonella may not have fevers - because bartonella tends to suppress fevers.

because of this some well known LLMDs treat for all 3 main infections - regardless of test results

in the |USA Babesia has high prevalence in tested ticks and patients - so this makes sense
in other countries ( i am in the UK ) the official incidence of babesia is minute numbers per year - and so it seems less like a sound assumption
however its hard to know if babesia is really rare in the wild in the UK - or just not studied or reported.
(there are studies showing its presence in small areas in the Scottish highlands in sheep and deer - and in some southern counties in dogs)

this is my biggest quandary at the moment - bartonella is definitive ( microscopy) lyme is highly probable ( IgM and IgG positive to B. Garinii ) - babesia - uncertain - some suggestive items on microscopy

Your reason is probably the reason I wouldnt bother testing as it's rare to have an infection in isolation especially in lyme or cfs. With the 3 Bs in lyme, that's where I'd use the herbs and meds with a broad action like cryptolepis and probably bactrim and doxycycline which would hit those 3 main bugs.

Babesia I've heard is so hard to test for, plus they can only test for 2 strains from memory but there are many more. Even the borrellia they have found in Australia is a different strain but occasionally it gets picked up in overseas testing as borellia bergdorfori. I don't think you can put much faith in the testing??

His name escapes me, but one of the lyme guru has an extensive questionnaire that can indicate more accurately if you have a tick Born infection. I think if I saw more general abnormalities in blood work indicating an infection like low or high neutrohils or maybe low level anaemia that's unresponsive to treatment and things like that along with the lyme questionnaire, that would be enough to get the ball rolling.

It all depends where one is financially I suppose, but I'd rather rely on what I said in the paragraph above and save my money for treatment. Maybe later on if your progress is stuck, than test for possible coinfections you might be missing??

Good luck👍.
Ps, do you mind sharing what you have tried so far for treatment?
Cheers