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Björn recovered from severe ME with antivirals (valganciclovir, ritonavir and isentress)

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
I have not been able to talk to my Dr about the Low Beta1 globulin and Low Pgamma globulin yet. Thanks for bringing it to my attention again I will ask my doctor about it in my next appointment.
How did you have beta1 globulins measured? Did they suspect multiple myeloma? And, what is Pgamna globulin?

We're you tested for total IgG and then IgG subclasses 1-4? And IgA and IgM?
I was/am hoping to get applied for IVIG for my immune mediated SFN. The thing is the medical care where I live does ONLY test for length dependant SFN (ankle biopsy) and not non length dependant SFN (thigh) like I have. I did get them to test my thigh as well due to the prevalence of normal ankle and abnormal thigh in those with TS-HDS.

Results from my thigh came back very low which they admitted was abnormal but they say they don't have normal ranges for thighs here and concludes with me not having SFN
Neuropathy can be from oxidative stress. Have you tried antioxidants or reducing peroxynitrites? Peroxynitrites (oxidative and nitrosative stress) are implicated in many types of neuropathy.

https://www.practicalpainmanagement...ief-symptoms-associated-peripheral-neuropathy

https://www.pagepressjournals.org/index.php/ozone/article/view/7517/7458

And, this lists a lot of different causes for SFN:

https://www.ccjm.org/content/85/10/801

Not offering an alternative diagnosis approach like sending a new biopsy to a respected lab like Mass general or Harvard. This infuriates me to no end. I have just sent a lengthy complaint and I will do all I can do to get IVIG.
I'm not sure you'd get much help even if you were an MGH patient as I am, unfortunately. Good luck with your efforts.

Have you looked into what infection might be triggering your autoimmunity?
 

ChookityPop

Senior Member
Messages
601
How did you have beta1 globulins measured? Did they suspect multiple myeloma? And, what is Pgamna globulin?

We're you tested for total IgG and then IgG subclasses 1-4? And IgA and IgM?

Neuropathy can be from oxidative stress. Have you tried antioxidants or reducing peroxynitrites? Peroxynitrites (oxidative and nitrosative stress) are implicated in many types of neuropathy.

https://www.practicalpainmanagement...ief-symptoms-associated-peripheral-neuropathy

https://www.pagepressjournals.org/index.php/ozone/article/view/7517/7458

And, this lists a lot of different causes for SFN:

https://www.ccjm.org/content/85/10/801

I'm not sure you'd get much help even if you were an MGH patient as I am, unfortunately. Good luck with your efforts.

Have you looked into what infection might be triggering your autoimmunity?

I brought a requisition to my doctor asking to test for antiphospholipid syndrome and complement system and the globulins was a part of the testing. My igg, iga, igm and subclasses has always been within range.
I am not familiar with peroxynitrates but I will look into it. Im sure I have a lot of oxidative stress going on. I do take NAC, Vit C, Selenium, Vit E and ALA.

As far as what infection might be triggering my autoimmunity I have tested positive for echovirus 9, Toxoplasmosis IGM, high EBV titers, high CMV, hsv 1, high HHV6, high mycoplasma pnemoniae. Also positive for varicella zoster and lyme (50-100 tick bites).

I have chronic echovirus 9 infection if I follow Dr Chia´s titer interpretation which may also be reactivating my herpes viruses. I will treat my enterovirus with an antiviral combo later this year.
I did not have toxo in 2018 and most likely caught it in august 2020 and I have been sick since 2014 (relapsed in 2019) so it cant be my root cause at least. I went on bactrim for a while but I have not had a new test but toxoplasmosis can like other infections go into tissues and be very difficult to treat so I dont think bactrim alone is sufficient.

The globulins are a family of globular proteins.

All globulins fall into one of the following four categories :
The most significant gamma globulins are immunoglobulins (antibodies), although some immunoglobulins are not gamma globulins, and some gamma globulins are not immunoglobulins.

Gamma globulin deficiency can alledgedly cause
bone loss (osteoporosis), bone pain, vitamin deficiencies, and increased infection probability. It would also be categorized as immunocompromised if the levels are low enough. I have not double checked these claims yet as I found it on FB.
 
Last edited:

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Has anyone used Isentress for herpes infections vzv/ebv/cmv/hhv6 ??
The attached says it very well might be effective.
have tested positive for echovirus 9, Toxoplasmosis IGM, high EBV titers, high CMV, hsv 1, high HHV6, high mycoplasma pnemoniae. Also positive for varicella zoster and lyme (50-100 tick bites)....
...
I have chronic echovirus 9 infection if I follow Dr Chia´s titer interpretation which may also be reactivating my herpes viruses. I will treat my enterovirus with an antiviral combo later this year
Good news, it looks like you have several treatable problems.:thumbsup: Hope you get the antivirals, and can report back that you are improving.:)
 

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Dan_USAAZ

Senior Member
Messages
174
Location
Phoenix, AZ
Has anyone used Isentress for herpes infections vzv/ebv/cmv/hhv6 ??

Yes, I had combined Isentress with Valcyte for chronically elevated HHV6 titers.

HHV6 >1280 Ref. <80

Valcyte by itself brought my titer down to range 160 – 320. We were hoping that adding Isentress would bring the titer down to normal range and provide more improvement in how I felt. It did not. Isentress did not appear to have any synergistic/additive affect when combined with Valcyte. I have never tested the effects of Isentress by itself.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,189
Location
australia (brisbane)
Yes, I had combined Isentress with Valcyte for chronically elevated HHV6 titers.

HHV6 >1280 Ref. <80

Valcyte by itself brought my titer down to range 160 – 320. We were hoping that adding Isentress would bring the titer down to normal range and provide more improvement in how I felt. It did not. Isentress did not appear to have any synergistic/additive affect when combined with Valcyte. I have never tested the effects of Isentress by itself.

Interesting. We're you able to keep titles down when off Valcyte or stay on another such as valtrex or famvir.
 

GlassCannonLife

Senior Member
Messages
819
Yes, I had combined Isentress with Valcyte for chronically elevated HHV6 titers.

HHV6 >1280 Ref. <80

Valcyte by itself brought my titer down to range 160 – 320. We were hoping that adding Isentress would bring the titer down to normal range and provide more improvement in how I felt. It did not. Isentress did not appear to have any synergistic/additive affect when combined with Valcyte. I have never tested the effects of Isentress by itself.

IgG titres I'm guessing?
 

Dan_USAAZ

Senior Member
Messages
174
Location
Phoenix, AZ
Interesting. We're you able to keep titles down when off Valcyte or stay on another such as valtrex or famvir.

Could not keep the titers down when I went off Valcyte. Within 2 months of being off Valcyte, the titers would be back over 1280 again. We tried many different combinations of antivirals with Valcyte, including 2 HIV retrovirus antivirals as well as both Valtrex and Famvir. Also tried the combination of Famvir and Valtrex together after stopping Valcyte, as it has been suggested that Valcyte could get the virus under control and Famvir/Valtrex would keep it there. It did not work for me.

So far, the only antiviral that appears to lower my IgG titer is Valcyte. I was on Valcyte for 6+ years during the experimentation listed above. I finally just decided that I could not stay on Valcyte forever, as I feared the long term effects. I was probably already on it too long. If I were able to get it, I might like to try artesunate or cidofovir.

The reality is, I have no idea if I have reactivating/chronic HHV6. The chronically elevated titer is abnormal and would seem to suggest so, but I have never been able to detect HHV6 in a PCR test. I also had a lumbar puncture to see if it was in CSF. None found. I suppose it’s possible that it is embedded in other tissues and reactivating, but that would be like searching for a needle in a haystack.

Also, I like Prusty’s theory wherein the virus attempts to reactivate but is unable to do so due to the quick response of the immune system to disable/fragment the mitochondria. I suspect that it would also trigger the immune system to raise the IgG response. The quick response by the immune system shuts down all attempts to reactivate the virus, so nothing detected on PCR test, but you are always in a state of immune activation and dysfunctional mitochondria…… ME/CFS? (or one version of it).
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,189
Location
australia (brisbane)
Could not keep the titers down when I went off Valcyte. Within 2 months of being off Valcyte, the titers would be back over 1280 again. We tried many different combinations of antivirals with Valcyte, including 2 HIV retrovirus antivirals as well as both Valtrex and Famvir. Also tried the combination of Famvir and Valtrex together after stopping Valcyte, as it has been suggested that Valcyte could get the virus under control and Famvir/Valtrex would keep it there. It did not work for me.

So far, the only antiviral that appears to lower my IgG titer is Valcyte. I was on Valcyte for 6+ years during the experimentation listed above. I finally just decided that I could not stay on Valcyte forever, as I feared the long term effects. I was probably already on it too long. If I were able to get it, I might like to try artesunate or cidofovir.

The reality is, I have no idea if I have reactivating/chronic HHV6. The chronically elevated titer is abnormal and would seem to suggest so, but I have never been able to detect HHV6 in a PCR test. I also had a lumbar puncture to see if it was in CSF. None found. I suppose it’s possible that it is embedded in other tissues and reactivating, but that would be like searching for a needle in a haystack.

Also, I like Prusty’s theory wherein the virus attempts to reactivate but is unable to do so due to the quick response of the immune system to disable/fragment the mitochondria. I suspect that it would also trigger the immune system to raise the IgG response. The quick response by the immune system shuts down all attempts to reactivate the virus, so nothing detected on PCR test, but you are always in a state of immune activation and dysfunctional mitochondria…… ME/CFS? (or one version of it).

Makes it tricky, responders usually got 1 or 2 years before needing valcyte again.
Isentress is suppose to be active against ebv and co , much better long term safety profile compared to valcyte.
 

Treeman

Senior Member
Messages
834
Location
York, England
He also received Rituximab- not sure why this was not mentioned - he relapsed and recovered after another rituximab treatment

Is there a diagnostic test to inform if some could benefit from rituximab, or do they have a strong idea who could benefit from the treatment?
 
Messages
51
I had a positive HHV6 PCR test. Because I get IVIG, antibody titers do not work on me, because I am getting the blood donor antibodies. Additionally, before I went on IVIG, my antibody production was insufficient and my Epstein Barr was missed because multiple doctors only ran antibody titers. It wasn't til my ME/CFS specialist ran an EBV PCR test that I was diagnosed, and then prescribed the valganciclovir which greatly helped.
when i got ME CFS in 1992 my EBV antibodies were not high ie normal. Is PCR different then?
 
Messages
4
Hi,
I am Sara in the story above, wife of the recovered patient Björn Sjöberg. I haven´t visited the forum in a long time but did now, and read the story of my family. I am sorry I did not see it earlier. I will answer the questions I can answer and give some more information.
Wise of experience I will say that I am not able to answer any questions about how these drugs work (dont know) and that I am not interested in any debate. I just want to share what helped my husband in case someone could benefit from that. He has done the same in swedish on facebook to give fellow patients the information that this worked for him and maybe give some hope. Since I don´t visit the forum often you can write to me at sarasjoberg79@gmail.com if you have a specific question that I did answer to below.

I realize we are extremely lucky and I hope Björn will continue to have this health from now on. Living with this for four years is nothing compared to most of you but still it was hell in a family with small children and took a toll on all of us. To go from that level of illness to normal health, I sometimes can´t believe how lucky we are. I am sure many more patients could get well or better if more doctors were a little more brave and caring like Jonas Axelsson, the doctor that treated Björn.

There are some minor misconceptions in the article related to timeline for example, but the core of it is correct. It is written by a fellow recovered patient that also is called Björn, which can cause some confusion. He has made a great impact for patients, written a book about his own story, recently completed a long walk for ME and been part of the work that recently led to the decision of the parliament to establish a center for ME-knowledge in Sweden. Jonas Axelsson was one of the speakers at a hearing to inform the politicians about the situation for patients.

I have structured the text so you only have to read what interests you.

History of all the drugs Björn has been taking before otezla and antivirals.

*Acute phase after getting ill: strong painkillers, various things for anxiety, sleep etc.
*Trying rituximab in Norway. (no real improvement but after the horrendous trips there– no worsening either after recovering from PEM from travelling. There may even have been a tiny improvement but that could also have been a natural course of the disease.)
* Symptom relief by doxidropa (dops) after finding out about Delayed orthostatic hypotension (not POTS, since his heartrate did not rise). Highest possible dose, he took the same as old men with parkinson. This made a real difference, functioning level went from severe to moderate I would say. He woke up, felt like hell, took the pills and slowly the body started to function. It reduced sound intolerance, dizziness, overall disease feeling, removed black circles under eyes. He was like an addict sometimes, waiting for the next dose so mind and body could work again.
* Better muscle functioning still with mestinon.

Doses of Otezla and antivirals
Björn started in november with Otezal (apremilast) 30 mg, 2 times a day (morning and night)
Got great effect but then crashed around christmas, probably due to an infection . Jonas theory was (if I remember right and note that I might got it wrong in the first place) that the Otezla works but when the disease activity rises (viruses or some mechanism related to that) the Otezla can´t to its work properly. He revised his thinking and and said he wanted to add a mix of antivirals.
So, in april Björn started with:
Ritonavir 100 mg / day (at night)
Valgacyklovir 450 mg /day (in the morning)
Isentress 600 mg /day (two times I think)

This apparently got Otezla working again and the recovery process continued. It took about 6 weeks from starting antivirals for the process to turn around and after maybe two months most of the symptoms were gone. Of course it was still a long road from there, getting off doxidropa and mestinon and getting back to life in many different ways, building up activity level etc.

Cutting down on symptom relief medication
A very visible ”objective” sign that something really happened in the body and not in the mind (if anybody was stupid enough to think so) was that Björn rapidly had to cut down on Doxidropa that regulated his blood pressure. Before otezla and antivirals he needed maximum dose, now the same doses made his heart rush. He cut down a pill at a time and finally did not need it anymore.
Jonas said that now when the body worked, the mestinon was being counterproductive and Björn had to cut down to maximise the recovery. This was really hard, since cutting down gave severe anxiety. He did it very gradually over several months, but Jonas was right, he continued to improve.

Medication today:
Otezla, valgacyklovir and ritonavir (doses above)
After a few months Jonas wanted Björn to try and remove one antiviral at a time, to find out which one was most important. Since Isentress cost us about an unsustainable 500 dollars a month (all the others were mostly covered by the public system) we tried with that first and nothing bad happened. Either it was not necessary or it had already completed its work, I have no idea. Björn has not yet been able to quit any of the others. He has felt symptoms when he tried but that was a while ago know. Jonas says that since Björn can feel a hint of his ME-symptoms when he gets other infections (shortness of breath, some tingling in arms) he does not advice to experiment with this any more at this point. So Björn keeps taking the same doses.

Tests
Björn could not travel if it was not extremely necessary so he did not go to Jonas for testing. I think he did some extented but still pretty basic blood tests through his regular doctor and these were sent to Jonas. But Jonas also got all the journals and results from testing at the hospital when Björn first got ill, describing that he did not have MS, a brain tumour etc. Björn was also supposed to save urine for three days when he could not take doxidropa and mestinon, and did so feeling completely awful, but the local hospital lost the samples ... I don´t think Jonas had the heart to make him do it all over again so he went on with treatment anyway based on what he knew. Hence: I cant give you any proper answers about testing and viruses. But now at the Amelie Clinic, Jonas does much more testing, I have understood.

Info about his ME-symptoms and disease level
Some additional information that may give a hint of Björns history or symptoms resemble yours, if there is some subgroup here.

He had most of the symptoms other patients report of: overall feeling of being very ill, pain in especially arms and neck, head ache, muscles not working (legs not wanting to walk, hands not able to function normally), dry eyes, nausea, hard to swallow, hard to breath and sometimes talk, dizziness, disrupted sleep, cognically impaired, could not stand sound, pain when someone touched the skin, looking pale, anxiety and a lot more. Had to remove his gall bladder during the disease period.
He used to be a long distance swimmer and is able to push himself really hard psychically. At his worst, he described that the activity he could do before acid level threshold (sorry, bad english) was really low and just getting up from a chair could cause the same feeling as when you could not do a single repetition more at the gym.

Before starting on otezla he never had a cold or a fever while having ME, only worsening of symptoms that may have been his response when the rest of the family had a cold.

Level of functioning:
Without symptom relief: Bed- or couch-bound. Severe probably, with some better days at a more moderate level and worse days when he could hardly move in bed, greath breathing difficulties, could not eat, got strange spasms at one point, During 2017 the steps per day probably mirrored about 3-4 tours from bedroom to bathroom and kitchen. At the lowest points he had too use a wheelchair and could not get up from the sofa without my help.

With doxidropa and mestinon: moderate and even mild on some days. Started to visit the workplace for about an hour at a time. When he had to stay of them for three days to do testing he was back to bed- and couchbound.


About his doctors
Björn got doxidropa and mestinon from Artur Fedorowski, heart specialist with an interest in POTS and related diagnoses, now also long covid I think.

Jonas Axelsson was the doctor prescribing Otezla and antivirals. He is one of the best people I have ever met. I got in contact with him by emailing him before he started his private clinic. He accepted to try to help Björn basically in his free time, I think out of both empathy and curiosity. I think that he had then already treated some patients and knew about the horrors of this disease. Patients had contacted him since he worked with stem cells. He is among other specialties an immunologist and is used to treating people with antivirals and similar after kidney transplants, if I am not mistaken. He said that the "do no harm" thing in the doctors oath can´t be taken as an excuse not to do anything when a patient is that ill, he seemed to understand how dangerous it can be to be if you don´t have hope. He was holding a good position at Karolinska hospital (well known) but chose to take on ME and related diseases despite the stigma and, I am sure, the contempt of some fellow doctors.

Our own theory is that Björn responded so well because Jonas went ”all in” with the medications. And also that Björn was extremely lucky that he did not have any side effects and tolerated everything he tried. I think Jonas has to be more careful nowadays and treat patients more gradually. Unfortunately there was a tv program about long covid that reported that Jonas clinic did not have a proper research permit for a covid project. I think if anything it was a minor mistake, like he had not got the final approval after translating a patient information or something like that ( I think he was really busy) but someone wanted to highlight this and ruin everything. I do not know if it was some competitive other researcher or just the common attitude against the disease that caused this. I would say there are greater crimes committed by doctors against post – infectious and ME patients in the history of medicine. Really unfortunate program and I am happy Jonas still carries on anyway despite the effects this probably had for him personally and in the end for the patients.

I hope our story could help anyone. I read on the clinics website that they do not have the capacity to accept more patients at the moment. But if you have a good doctor that want to help but has run out of ideas, maybe her or him can consult with Jonas for a discussion of treatment ideas, I do not know if this is an option but one can always try.
// Sara
 
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