Parvovirus B19 in an Icosahedral Nutshell

April 24, 2013

Joel (snowathlete) reviews the research on ME/CFS and Parvovirus B19.

Parvovirus B19. Image curtesy of Dr Jean-Yves Sgro, Virusworld

Parvovirus B19. Image courtesy of Dr Jean-Yves Sgro, Virusworld [*]

Parvovirus B19 (B19) is a small virus with an icosahedral shell (a polyhedron having 20 faces) [1] and has been linked with the onset of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). B19 was discovered fortuitously in 1975. There are several other parvoviruses, but most don’t infect humans.

You may have heard of the parvovirus which infects dogs and often causes fatality, but B19 is not the same virus, or even in the same genus, so B19 is not a zoonotic. In humans, B19 is often caught in infancy and causes “slapped cheek”, also referred to as “fifth disease”, and is considered to be mild and self-limiting. B19 is highly contagious and is transmitted via respiratory droplets, in the same sort of way as influenza is transmitted. If you don’t catch it in childhood then you can catch it in adulthood and it may be a mild illness, sub-clinical, or it can be more severe causing symptoms such as fatigue, arthritis and heart problems.

Even in adulthood, B19 infection is generally considered to be short lived, with most adults getting over it in weeks or sometimes months. Nonetheless, there are a neglected minority of people out there, predominately women, with chronic B19 who get little attention and who have this very debilitating infection on an ongoing basis.

A little more detail
The inner genetic material that makes up the viral part is comprised of single-stranded DNA. The primary target of B19 infection are the erythroblast cells, which are found in the bone marrow and mature to become erythrocytes (red blood cells).

The virus encodes three major proteins; Viral Protein 1 (VP1), Viral Protein 2 (VP2), and a non-structural protein (NS1).

About half of all adults have been exposed to the virus and developed immunity to it. B19 can be a problem for some disease groups, including AIDS sufferers, who often develop anemia as a result of the infection. B19 when caught for the first time and while in pregnancy can also be serious.

Intravenous Immunoglobulin is the primary treatment for Parvo B19

Intravenous Immunoglobulin is the primary treatment for Parvo B19

Treatment
Surprisingly, perhaps, there aren’t many treatments available for B19. The frontline treatment is intravenous immunoglobulin (IVIG) which is where antibodies from at least a thousand healthy blood donors are pooled and then shot into your veins (sounds tempting doesn’t it?)…

This new immunoglobulin in your veins tackles pathogens in your body, and modulates the immune system. It is an FDA approved treatment for many immune deficiencies, and for various autoimmune diseases. It is an off-label treatment for B19 and many other diseases.

Not all IG products are the same, with brands processed differently and containing different additives. People often respond better to certain brands than others, and adverse reactions are more common in some brands too. There are studies on this, and you should investigate for yourself if you are considering IG treatment.

You have the risk of this product coming from multiple sources. So as to be sterile, the FDA guidelines state that the product should be screened and treated for viruses and should not come from patients who have HIV or hepatitis. Adverse effects are not uncommon and range from headaches, or dyshidrotic eczema, to anaphylactic shock, renal failure or transmission of diseases such as HIV via contamination.

The good news is that there have been several studies on IVIG in ME/CFS and although most of the findings conflicted with each other, all the studies of IVIG in parvovirus-induced ME/CFS were positive. If you tested positive for a current B19 infection then it might be worth thinking about, but if you have complicated co-infections as well, then it may be a harder decision due to the lack of available data. More on this later…

But say you don’t want to, or cannot access IVIG (it is quite expensive) – what are the alternatives?

Equilibrant is supposed to work on it, some say, so that may be a treatment that people want to try first as it’s perhaps less risky and is not prohibitively expensive, but to my knowledge it hasn’t been through any formal trials on B19. On a positive note Dr Chia was involved in one of the B19 studies on ME/CFS, so perhaps he has a view on Equilibrant and its efficacy against B19?

B19 and ME/CFS
Parvovirus B19 has been linked with ME/CFS for some time, there are several papers on it, though not much has been written about it outside of the medical journals. ME/CFS patients, when tested for it, often have higher than normal levels of IgG antibodies for B19, suggesting that some may have a persistent B19 infection. Additionally, there is some evidence that people with chronic B19 infection have a defective IgG antibody immune response [2].

Not all people with ME/CFS test positive for B19, so perhaps it isn’t the cause of ME/CFS for all, but it may be for some, and in others it could be an opportunistic infection, and others may not have it at all…Then again, as you will read below, blood tests don’t necessarily tell a reliable story.

What do the published studies tell us?
1995

The first published study on B19 in ME/CFS was by Komaroff [3] and was small. It looked in blood and bone marrow and found no link between B19 and ME/CFS. The patients also had other conditions that potentially may actually have skewed the results, including mild leukopenia (low white blood cells), thrombocytopenia (low platelets), or anemia. Still, there is a first step in everything, and this was the first B19 study in CFS.

1996

The next year came a report from Jacobson et al. that a single patient with an illness indistinguishable from CFS was found to have a persistent B19 infection and treatment with Intravenous immunoglobulin (IVIG) resolved the illness [4].

1997

Then, Jonathan Kerr came onto the scene in 1997 with another small study looking for B19 in the skeletal muscle of six CFS patients [5]. He found it in one patient and in one control who suffered from mild arthralgia and at the time he concluded that B19 was not likely involved in the etiology of CFS.

2002

Five years later in 2002, Jonathan Kerr [6] published another paper looking at patients with arthralgia (joint pain) and fatigue as a result of B19 infection. Only 13 out of 51 patients studied had fatigue and only five of these met the CDC (Fukuda) criteria. So still we didn’t have a large sample to draw conclusions from, however it reaffirmed what we already knew – that not everyone who gets B19 gets CFS, but some do. The most notable finding, perhaps, was that arthralgia could be caused by parvovirus.

An interesting study from the University of Washington [7] came later in the same year, and looked for differences in 22 pairs of identical twins where one of the twins was diagnosed with CFS. Part of this study looked at B19 but only looked for it by PCR (looked for the viral DNA in the blood) and only for IgM antibodies, not IgG. This limits the study’s usefulness. They found no difference between healthy and CFS twins.

2003

Given Kerr’s prior conclusion in 1997 that B19 was not involved in the etiology of CFS, it may have been a surprise that he published a paper the next year reporting the “Successful intravenous immunoglobulin therapy in 3 cases of parvovirus B19-associated chronic fatigue syndrome” [8]. Though based on the report from Jacobson, he may well have felt that persistent B19 infection in CFS may represent a subset of patients and warranted further study. And indeed, his new study was three times the size of Jacobson’s’…it looked at three CFS patients…nonetheless his results matches Jacobson’s: “IVIG therapy led to clearance of parvovirus B19 viremia, resolution of symptoms, and improvement in physical and functional ability in all patients, as well as resolution of cytokine dysregulation.”

Non-parvovirus specific treatment of CFS with IVIG has been studied a few times with mixed results [9, 10, 11, 12]

2005

More work followed by Kerr and colleagues in 2005 [15], adding to another paper in 2001 [13] and 2003 [14], exploring some of B19′s mechanisms of persistence, including raised levels of cytokines and host gene expression variability in CFS.

Another paper from McGhee et al. reported the successful IVIG treatment of a single patient with B19-associated CFS [16].

2008

In 2008 researchers from Japan – Seishima et al. – got in on the act and examined 210 patients following acute B19 infection [17]. They looked at antibody production, the presence of B19 DNA and complement protein levels (complement proteins are part of the innate immune system). They found no persistence of DNA or antibodies in CFS patients compared to controls (which didn’t agree with earlier findings by Kerr et al.), but did find a “persistent decrease in a greater proportion of patients with persistent symptoms”, suggesting that these persistent symptoms may be the result of something other than B19 DNA presence in the blood.

The Japanese study suggested that there were other factors involved, and the same year Kerr published more research showing an association between psychological stress and acute and chronic fatigue and arthritis following B19 infection [18]. The study data is not without its limitations, but suggested that stress may predispose people to infection with B19 and affect disease progression.

2009

In 2009 two different groups, one from Japan [19], the other from Egypt [20], reported very similar findings: no increased prevalence of B19 IgG or IgM antibodies in CFS patients compared to controls. Both sets of authors concluded that B19 bears no relationship to CFS. Nonetheless, both groups did also report an increased IgG titer in the CFS group compared to controls, which was significant.

A study by Pironi et al. [21] reported that B19 infection may be localized in the intestinal mucosa and may be associated with inflammatory bowel disease. The same year, De Meirleir reported B19 in the intestinal mucosa of 40% of ME/CFS patients versus 15% of controls [22] and recently (in 2013) reported with Lombardi the discovery of HERV expression within the duodenum of patients [23]. Could there be some association between these two findings?

Of additional interest was the finding that 11 out of 32 patients were positive for B19 in the intestinal tract, but were found to be negative when tested in the blood. This further supports the view that B19 infection may be tissue localized, and may explain the persistence of symptoms reported by Seishima et al. [17], despite the disappearance of B19 DNA from the blood.

2010

Parvovirus. Used by kind permission of Eye Of Science.  Image © eye of science

Parvovirus B19.
Image © eye of science [**]

Kerr, along with Enlander, then published a study together in 2010 [24]. This study looked at 88 genes previously linked with ME/CFS in 56 new patients and 55 patients from a previous study. The patients were tested for the presence of antibodies to B19 as well as other pathogens including EBV, enterovirus, and Coxiella burnetti. B19 was positive in 74% of patients – in line with the general population, as were the other pathogens. Nothing significant in that. The significance of this paper was in the area of gene expression and the potential to identify subtypes, and although the B19 patients had gene expression consistent with other ME/CFS patients, compared to controls, it was not possible to identify specific differences in the B19 positive patients compared to the rest of the patient sample. This is not really surprising given the high prevalence of B19 within the patient sample.

Around the same time, we got another study from Enlander and Kerr along with several other colleagues, including well-known ME/CFS researchers Komaroff and Chia [25]. 200 patients and 200 controls were recruited. The subjects were tested for antibodies against B19 VP2, B19 NS1 and viral DNA. As expected, seroprevalence (B19 VP2) was similar between the two groups.

But when they compared B19 NS1 antibodies they found clear differences between the two groups. 83 (41.5%) of the CFS patients were positive for B19 NS1 compared to just 14 (7%) of the control group. 61 of the 83 patients complained of chronic joint pain, strongly suggesting that the joint pain was as a result of dysfunctional immune control of the virus, irrespective of whether B19 was the inducer of ME/CFS or an opportunistic infection.

On that point, only 11 of the 200 patients were positive for B19 viral DNA, compared to zero controls, to which the authors state:
“this finding may suggest that the disease in these 11 patients may have been somehow induced by acute B19 infection. Such patients have previously been shown to respond very well to intravenous immunoglobulin (IVIG)…In patients with antibodies to anti-B19 NS1, but without parvovirus B19 DNAaemia, it is possible that the parvovirus infection was latent and reactivated at a low level.”

However, the findings of De Meirleir [22], which reported finding B19 DNA in the intestinal tract but not the blood, suggest that looking for B19 DNA in the blood may not be a reliable approach, and perhaps with this in mind, the authors speculate:

“Following the acute phase of infection, B19 virus DNA persists, possibly life-long in many tissues of the human body. It is possible that chronic B19 antigen stimulation may be responsible for an inflammatory state which could increase levels of these transcription factors, although this requires confirmation.”

2012

The most recent study published on parvovirus in ME/CFS (Fukuda definition) is from Latvia and looked at B19 as well as HHV-6 and HHV-7 [26]. They found B19 IgM antibodies – suggesting acute infection – in a surprisingly high proportion of patients: 60/108 patients (55%) compared with 11/90 practically healthy controls (12%), which disagrees with the findings by Koelle et al. [7].

Though not specific to B19, perhaps of note is that a variety of concurrent active infections were common in the patient sample (29/108) but were absent in the 90 controls, who made up the majority of those with latent infections or without any infection.

The researchers looked to correlate symptomology with the presence of active infections. It is surprising that of the nine symptoms measured (based on Fukuda criteria), the 11 patients with a single active B19 infection all provided the same answer, resulting in scores of either 0/11 or 11/11 patients for each symptom and suggesting strong statistical significance. This is unusual, but if this data is right then it suggests a very clear subset of patients with CFS which may be caused by B19. The more recent International Criteria [27], for example, have postexertional malaise (under the name ‘Postexertional neuroimmune exhaustion’) as a compulsory feature of ME diagnosis, which effectively would have excluded these 11 patients with single active B19 infection.

What’s next?

As you can see, there have been a fair number of studies into B19 in ME/CFS, but we probably need more research before we can really crack the icosahedral nut of B19 and fully understand what role it plays in the ME/CFS puzzle.

We have several ME/CFS doctors wh are familiar with B19, having researched it before, and we know that Dr Marshall in Australia also has some recent experience with B19, albeit in another disease (common variable immunodeficiency) [28]. Some ME/CFS physicians test for B19 and treat for it if appropriate. We don’t know for sure if anyone is researching B19 in ME/CFS right now, but it looks like the B19 story in ME/CFS has more pages yet to be written.

Joel was diagnosed with ME/CFS in 2009 but struggled with the illness for some time prior to this. He loves to write, and hopes to regain enough health to return to the career he loved and have his work published.

REFERENCES

* Graphic image of parvovirus B19 used with permission, courtesy of Dr Jean-Yves Sgro, VirusWorld. Image rendering using VMD software and based on 3D data from www.rcsb.org PDB (ID 1S58). Primary citation: The structure of human parvovirus B19.  (2004) Kaufmann, B.,  Simpson, A.A., Rossmann, M.G. Proc.Natl.Acad.Sci.USA 101: 11628-11633

** SEM Image of parvovirus B19 used with permission, courtesy of eye of science

  1. Kaufmann, et al. 2004. The structure of human parvovirus B19.
  2. Kurtzman, et al. 1989. Immune response to B19 parvovirus and an antibody defect in persistent viral infection.
  3. Komaroff, et al. 1995. Absence of parvovirus B19 infection in chronic fatigue syndrome.
  4. Jacobson, et al. 1996. Chronic Parvovirus B19 Infection Resulting in Chronic Fatigue Syndrome: Case History and Review.
  5. Kerr, et al. 1997. Parvovirus B19 and Chronic Fatigue Syndrome.
  6. Kerr, et al. 2002. Chronic fatigue syndrome and arthralgia following parvovirus B19 infection.
  7. Koelle, et al. 2002. Markers of viral infection in monozygotic twins discordant for chronic fatigue syndrome.
  8. Kerr, et al. 2003. Successful intravenous immunoglobulin therapy in 3 cases of parvovirus B19-associated chronic fatigue syndrome.
  9. Lloyd 1990. A double-blind, placebo-controlled trial of intravenous immunoglobulin therapy in patients with chronic fatigue syndrome.
  10. Peterson, et al. 1990. A controlled trial of intravenous immunoglobulin G in chronic fatigue syndrome.
  11. Rowe. 1997. Double-blind randomized controlled trial to assess the efficacy of intravenous gammaglobulin for the management of chronic fatigue syndrome in adolescents.
  12. Vollmer-Conna, et al. 1997. Intravenous immunoglobulin is ineffective in the treatment of patients with chronic fatigue syndrome.
  13. Kerr. 2005. Pathogenesis of parvovirus B19 infection: host gene variability, and possible means and effects of virus persistence.
  14. Kerr, et al. 2001. Circulating tumour necrosis factor-alpha and interferon-gamma are detectable during acute and convalescent parvovirus B19 infection and are associated with prolonged and chronic fatigue.
  15. Kerr, et al. 2003. Cytokines in parvovirus B19 infection as an aid to understanding chronic fatigue syndrome.
  16. McGhee, et al. 2005. Persistent parvovirus-associated chronic fatigue treated with high dose intravenous immunoglobulin.
  17. Seishima, et al. 2008. Chronic fatigue syndrome after human parvovirus B19 infection without persistent viremia.
  18. Kerr, et al. 2008. Preexisting psychological stress predicts acute and chronic fatigue and arthritis following symptomatic parvovirus B19 infection.
  19. Kato, et al. 2009. No apparent difference in the prevalence of parvovirus B19 infection between chronic fatigue syndrome patients and healthy controls in Japan.
  20. Mohammed I Abdul Fattah, et al. 2009. Is Parvovirus B19 Infection Incriminated in Chronic Fatigue Syndrome?
  21. Pironi, et al. 2009. Parvovirus b19 infection localized in the intestinal mucosa and associated with severe inflammatory bowel disease.
  22. De Meirleir, et al. 2009. Detection of herpesviruses and parvovirus B19 in gastric and intestinal mucosa of chronic fatigue syndrome patients.
  23. De Meirleir, Lombardi, et al. 2013. Plasmacytoid dendritic cells in the duodenum of individuals diagnosed with myalgic encephalomyelitis are uniquely immunoreactive to antibodies to human endogenous retroviral proteins.
  24. Enlander and Kerr, et al. 2010. Microbial infections in eight genomic subtypes of chronic fatigue syndrome/myalgic encephalomyelitis.
  25. Enlander, et al. 2010. Antibody to parvovirus B19 nonstructural protein is associated with chronic arthralgia in patients with chronic fatigue syndrome/myalgic encephalomyelitis.
  26. Chapenko, et al. 2012. Association of active human herpesvirus-6, -7 and parvovirus b19 infection with clinical outcomes in patients with myalgic encephalomyelitis/chronic fatigue syndrome.
  27. Carruthers, et al. 2011. Myalgic encephalomyelitis: International Consensus Criteria.
  28. Marshal, et al. 2012. Common variable immunodeficiency presenting with persistent parvovirus B19 infection.

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34 comments

{ 34 comments… read them below or add one }

Sasha April 25, 2013 at 12:57 am

Thanks, Joel – another excellent article!

Presumably this is one of the viruses that Drs Lipkin and Hornig will be looking at in the pathogen study – I'm assuming they're also looking at all the viruses in relation to each other.

It seems that part of our problem is sorting out which virus, if any, causes other viruses to run riot and should therefore be the main target for treatment. People are treating HHV-6 infections with Valcyte but although patients improve my (blurry) impression is that HHV-6 titres are't clearly associated with clinical status so there's a question over whether Valcyte is targetting HHV-6 directly and whether HHV-6 causes, rather than reflects, an immune system problem.

Not sure about anything I just said! I just skim this stuff and it doesn't stay very well in my brainfoggy head.

chronix April 25, 2013 at 2:49 am

Good article, thanks.

I wonder if the Hornig study will be looking at pathogens in the gut, not just in the blood.

Firestormm April 25, 2013 at 3:42 am

I was at first diagnosed with parvovirus. I seem to recall there were pictures on Wikipedia of the 'blotching' or 'mottling' that occurred on my palms and inner/outer arms. I can't seem to find the pictures now…

I do recall several other doctors who confirmed the diagnosis making 'jokes' about me being in contact with 'dogs'. Wasn't funny at the time but brings a smile to my face now (some 14 years or so later) :)

Thanks Joel. I was told that this could be yet another 'latent' virus reactivated by 'stress' in later life. Same thing may apply to many other viral 'triggers' including Herpes viruses I understand. Might explain rather a lot about our 'rollercoaster' existence of relapsing/remitting…

Edit: happened across this article (basic) from BBC Science earlier today. Others might find it interesting: http://www.bbc.co.uk/science/0/22028517

snowathlete April 25, 2013 at 4:30 am
Sasha

Thanks, Joel – another excellent article!

Presumably this is one of the viruses that Drs Lipkin and Hornig will be looking at in the pathogen study – I'm assuming they're also looking at all the viruses in relation to each other.

Thanks Sasha! :)
Yes, I assume so. Its one of the viruses that have been majorly linked with ME/CFS over the years, so I imagine it must be one of the 17 (was it 17?) that they were going to look at first.

Sasha

It seems that part of our problem is sorting out which virus, if any, causes other viruses to run riot and should therefore be the main target for treatment. People are treating HHV-6 infections with Valcyte but although patients improve my (blurry) impression is that HHV-6 titres are't clearly associated with clinical status so there's a question over whether Valcyte is targetting HHV-6 directly and whether HHV-6 causes, rather than reflects, an immune system problem.

Not sure about anything I just said! I just skim this stuff and it doesn't stay very well in my brainfoggy head.

Yeah, it's a real puzzle, they co-infections. I think you really need to test them all and if you're lucky maybe you dont have too many, but a lot of people seem to have several in combination, which makes treating them more of a pickle.

snowathlete April 25, 2013 at 4:33 am
chronix

Good article, thanks.

I wonder if the Hornig study will be looking at pathogens in the gut, not just in the blood.

Your welcome chronix!
As far as I know it's only looking blood, but there was talk of wanting to extend it to look at spinal fluid? I think Simon's article on Hornig gives more detail: http://phoenixrising.me/archives/16081

kolowesi April 25, 2013 at 8:21 am

Great article! I love the picture, what a beauty! And listing out the chronology of the studies is so helpful.

I might have a datapoint. In 2004 (infected early 1998), I saw a doc who tested for Parvo B19, I think an IgG antibody blood test. My number was 7+ with normal being < 1. After some time on valcyte, it had gone down to 5+. Maybe enough to be significant. Or maybe it was one of the other viral infections which was responding to Valcyte and by taking that or those down, the B19 calmed down.

I did have very low absolute B cells early in my illness. They recovered, but I think they are not right.

Anyway, like you said, there is some kind of synergism amongst the various pathogens. I don't have a doc who will prescribe IVIG, but I take colostrum with 40% IgG 4 times a day, and it supposedly helps in the gut.

Ema April 25, 2013 at 8:38 am

I tested positive for Parvo B19. I'm doing SCIG (Hizentra). It will be interesting to see if that level goes down after some time on treatment.

It hasn't been a miracle cure though, likely because I also test highly positive to HHV6, CMV, and EBV. Hopefully it is all helping though!

Ema

snowathlete April 25, 2013 at 3:48 pm
kolowesi

Great article! I love the picture, what a beauty! And listing out the chronology of the studies is so helpful.

Thank you Kolowesi!
Yes, I agree the images are great – its nice to be able to see the little blighters! I'm very grateful to VirusWorld and eyeofscience for letting us use their excellent images.

kolowesi

I might have a datapoint. In 2004 (infected early 1998), I saw a doc who tested for Parvo B19, I think an IgG antibody blood test. My number was 7+ with normal being < 1. After some time on valcyte, it had gone down to 5+. Maybe enough to be significant. Or maybe it was one of the other viral infections which was responding to Valcyte and by taking that or those down, the B19 calmed down.

My IgG came back as 24.6 (I think) recently, which is why I decided to read everything ever published about B19 and ME/CFS! I don't know yet what De Meirleir will prescribe me to fix it.

kolowesi

I don't have a doc who will prescribe IVIG, but I take colostrum with 40% IgG 4 times a day, and it supposedly helps in the gut.

That sounds interesting. One of the studies above found B19 in the gut, so I'd guess there is some logic to trying to treat that. Does it matter which brand you take – and if it does, then which do you take?

snowathlete April 25, 2013 at 3:54 pm
Ema

I tested positive for Parvo B19. I'm doing SCIG (Hizentra). It will be interesting to see if that level goes down after some time on treatment.

It hasn't been a miracle cure though, likely because I also test highly positive to HHV6, CMV, and EBV. Hopefully it is all helping though!

Ema

Yeah, looks like getting at all the different concurrent infections under control is important. How long have you been taking it and how long will you need to continue do you think? Is it much cheaper than IVIG? (sorry for all the questions!) It's just that the cost of IVIG might make it inaccessible for me, so I'm definitely interested in hearing more about SCIG.

JT1024 April 25, 2013 at 4:02 pm

snowathlete.. I noticed this at the beginning of your article on Parvo "Joel (snowathlete) continues his series on pathogens in ME/CFS with an in-depth look at Parvovirus B19.".

I haven't seen any other articles… can you point me to them? I tested negative for Parvo but positive for numerous others. There just is so much to learn/understand and trying to make wise decisions on medical care/choices is increasingly difficult for me.

I would love to read anything else you've written!

Thanks for your great article! ~ JT

snowathlete April 25, 2013 at 4:51 pm
JT1024

snowathlete.. I noticed this at the beginning of your article on Parvo "Joel (snowathlete) continues his series on pathogens in ME/CFS with an in-depth look at Parvovirus B19.".

I haven't seen any other articles… can you point me to them? I tested negative for Parvo but positive for numerous others. There just is so much to learn/understand and trying to make wise decisions on medical care/choices is increasingly difficult for me.

I would love to read anything else you've written!

Thanks for your great article! ~ JT

Thank you JT – I'm pleased you liked the article.
The article intro is a little editing error. I didn't think too many people would spot it, so we left it in there. I have an article coming up shorty on Bartonella as part of the zoonotics series and the description got a bit mixed up. As B19 isn't a zoonotic it isn't part of that series (if you want pointing to the zoonotics series then let me know), so I haven't truly started a series on pathogens, this is really a standalone article…However, I do anticipate writing something on herpes viruses at some point (I may well wait for some new research to be released first so that it is current) and if my test results (which are due soon) show that I am positive for anything else, then that will prompt me to research it and probably write about it too.

In the meantime, If you, or anyone else, wants to let me know what topics they are interested in (which pathogens etc.), then if it's suitable for an article, then I'll try and find time to research and write about it.

Ema April 25, 2013 at 5:02 pm
snowathlete

Yeah, looks like getting at all the different concurrent infections under control is important. How long have you been taking it and how long will you need to continue do you think? Is it much cheaper than IVIG? (sorry for all the questions!) It's just that the cost of IVIG might make it inaccessible for me, so I'm definitely interested in hearing more about SCIG.

I started it in Jan 2013 so about 4 months now.

I qualified for the patient assistance program after about a year of trying to get my insurance to cover it unsuccessfully. So the med is free from CSL Behring and then Accredo (the specialty pharmacy) kicks in all the supplies and even the preliminary nursing visits.

It doesn't get much better than free so I will stay on it as long as possible so long as my antibodies stay in range. My hope is that once the infections are knocked down enough with antibiotics and antivirals, my own immune system will be able to keep them in check and I won't need the additional support any longer. Hopefully that will be true but it is too soon to tell.

The Hizentra does seem to be reasonably free of side effects unlike IVIG. I don't have to premedicate and as long as I infuse into my flanks (as opposed to my stomach) there is very little pain afterwards though I usually do have some lumps. I even know of a few people that are just using a butterfly needle and doing a subQ push with a little bit every few days as opposed to using the pump with the whole dose once a week. That would certainly be super easy…just veg out in front of the TV and infuse a little each night!

I hope this med will become more widely available so more people can try it. I really think we are just at the beginning of learning what it might be able to do to help.

Ema

JT1024 April 25, 2013 at 7:04 pm

I've tested positive (high titers) to EBV ( several different antigens), HHV-6, Mycoplasma, Chlamydia, Anaplasmosis, Babesia, and Lyme.

Additional testing for CD57 and C4a indicated I was ok on CD57 but way high on C4a. My limited research of C4a indicated my value was way beyond normal since it was >35,000.

I'm trying to figure out what to do next and my PCP was pretty shocked at the result. I'm in a huge crash but will read what I can when I'm able.

Thanks for your response! ~ JT

snowathlete April 26, 2013 at 7:29 am
JT1024

I've tested positive (high titers) to EBV ( several different antigens), HHV-6, Mycoplasma, Chlamydia, Anaplasmosis, Babesia, and Lyme.

Additional testing for CD57 and C4a indicated I was ok on CD57 but way high on C4a. My limited research of C4a indicated my value was way beyond normal since it was >35,000.

I'm trying to figure out what to do next and my PCP was pretty shocked at the result. I'm in a huge crash but will read what I can when I'm able.

Thanks for your response! ~ JT

I had thought to cover Babesia as part of the zoonotics series, but there hasn't been hardly anything published about it in relation to ME/CFS, so it's not an easy topic to cover.

Mycoplasma is interesting. I'll see if I can cover it at some point.

C4a is part of your complement immune system. I've noticed several people posting about it being high on the forums here. I expect you have too.

There have been papers about it in CFS, showing that it goes up in relation to exercise/PEM.

Some Lyme doctors use C4a as a measure for Lyme disease and say it is high in their patients.
You've probably already seen the article I did on Lyme, but in case you have'nt, you can find it here.

Have you had any treatment yet? Trying to get on top of the Lyme would probably be a big focus of mine if I were in your shoes, but I would imagine you need to tackle each of these infections. You'd do well to see a doctor who is used to treating multiple infections like these in CFS/ME as there may be an order to do it in that would be best. Hope that is of some help.
Best
Joel

JT1024 April 26, 2013 at 11:38 am

I've spent quite a bit of time on the phone and online today after having two doctors appointments this week.

Coordinating between doctors is really not easy. I've learned the hard way that many docs are not ordering some expensive tests (eg MRI/SPECT) because obtaining "permission" from insurance companies can take an hour of a nurse's time – away from taking care of other patients.

On top of the stuff most on this forum are dealing with, I am having a major issue with my right knee. I'm barely able to walk and can't put weight on it, turn, stand up from sitting, etc. This is impacting my work and home big time.

All I can say is one step at a time. That is all I can do!

Marlène April 26, 2013 at 12:08 pm
JT1024

I've tested positive (high titers) to EBV ( several different antigens), HHV-6, Mycoplasma, Chlamydia, Anaplasmosis, Babesia, and Lyme.

Additional testing for CD57 and C4a indicated I was ok on CD57 but way high on C4a. My limited research of C4a indicated my value was way beyond normal since it was >35,000.

I'm trying to figure out what to do next and my PCP was pretty shocked at the result. I'm in a huge crash but will read what I can when I'm able.

Thanks for your response! ~ JT

Hi, you can have a look at this:
http://www.lymeinfo.net/coinfections.html

My doctor just prescribed me azithromycine and minocycline as well as zelitrex.
I have EBV, CMV, coxsackie, parvo, chlamydia pneum, babesia, adeno.

My supplements are: D-Ribose Powder, 100% Whey Protein Isolate, Kre-Alkalyn EFX for muscle recovery and strength, Q10 for energy, Alive whole food energizer multivitamin, licorice root for the adrenals, vit B12 (Rich von Konynenburg protocol).

Last but not least, I use low dose naltrexone since 18 months. It caused a lot of herxheimers but things are much better now.

All the best.

snowathlete April 26, 2013 at 2:56 pm
JT1024

I've spent quite a bit of time on the phone and online today after having two doctors appointments this week.

Coordinating between doctors is really not easy. I've learned the hard way that many docs are not ordering some expensive tests (eg MRI/SPECT) because obtaining "permission" from insurance companies can take an hour of a nurse's time – away from taking care of other patients.

On top of the stuff most on this forum are dealing with, I am having a major issue with my right knee. I'm barely able to walk and can't put weight on it, turn, stand up from sitting, etc. This is impacting my work and home big time.

All I can say is one step at a time. That is all I can do!

Sorry to hear about your knee. I hope it get's better soon. Is it related to your infections? Lyme perhaps?

JT1024 April 26, 2013 at 3:21 pm

Thanks Marlene! I'm actually taking a lot of the same supplements for most of the same reasons you are (including LDN) but it has become overwhelming the last several months.

snowathlete… After learning several other people on another forum tested positive for Lyme, I was only tested in February for Lyme and then the co-infections in March. I wasn't really expecting it to come back positive.

My knee had had a ligament issue last fall that seemed to resolve over time with a brace and ice. The same knee started to really give me trouble right after I started taking the doxycycline.

I actually thought I had some type of herx reaction from they doxy since I felt like I went into a complete flare/crash. All of my joints hurt, including those in my hands and feet. I've been walking like an 80 year old with severe arthritis. Perhaps it is related to doxy. I know the doxy will hit Borrelia and Anaplasmosis but not Babesia.

I've had to stay and do nothing for a few days so hopefully this will get better soon.

Marlène April 27, 2013 at 1:29 am
JT1024

Thanks Marlene! I'm actually taking a lot of the same supplements for most of the same reasons you are (including LDN) but it has become overwhelming the last several months.

snowathlete… After learning several other people on another forum tested positive for Lyme, I was only tested in February for Lyme and then the co-infections in March. I wasn't really expecting it to come back positive.

My knee had had a ligament issue last fall that seemed to resolve over time with a brace and ice. The same knee started to really give me trouble right after I started taking the doxycycline.

I actually thought I had some type of herx reaction from they doxy since I felt like I went into a complete flare/crash. All of my joints hurt, including those in my hands and feet. I've been walking like an 80 year old with severe arthritis. Perhaps it is related to doxy. I know the doxy will hit Borrelia and Anaplasmosis but not Babesia.

I've had to stay and do nothing for a few days so hopefully this will get better soon.

You can try Cox 2 Tame supplement from Jarrow Formulas. Have a look at the customer reviews at iHerb. If you can interrupt the Cox2, prostglandine E2 will go down as well which is an inflammatory hormone often through the roof in Lymies and ME patients.

snowathlete April 27, 2013 at 10:33 am
JT1024

Thanks Marlene! I'm actually taking a lot of the same supplements for most of the same reasons you are (including LDN) but it has become overwhelming the last several months.

snowathlete… After learning several other people on another forum tested positive for Lyme, I was only tested in February for Lyme and then the co-infections in March. I wasn't really expecting it to come back positive.

My knee had had a ligament issue last fall that seemed to resolve over time with a brace and ice. The same knee started to really give me trouble right after I started taking the doxycycline.

I actually thought I had some type of herx reaction from they doxy since I felt like I went into a complete flare/crash. All of my joints hurt, including those in my hands and feet. I've been walking like an 80 year old with severe arthritis. Perhaps it is related to doxy. I know the doxy will hit Borrelia and Anaplasmosis but not Babesia.

I've had to stay and do nothing for a few days so hopefully this will get better soon.

That story of not expecting to be positive but finding out that you are, is pretty common. I am being tested and waiting for the results at the moment. I don't expect to test positive, but so many people do that I guess I wouldn't be surprised.

I really hope your treatment works. You may have to try a few things, but given a bit of time you've probably got a good chance of some improvement. One of the papers I read talked about a link bettween Borrelia fragments (where the living organism has been killed off by antibiotics or the immune system) in the joins and continuing to cause arthritis, even after Borrelia was no longer detectable in the blood (dont quote me on that though because my brain is foggy today and it was just something I skim read a while back). I don't think this is the case for everyone though, so hopefully your symptoms will all improve.

JT1024 April 30, 2013 at 10:03 am
Marlène

You can try Cox 2 Tame supplement from Jarrow Formulas. Have a look at the customer reviews at iHerb. If you can interrupt the Cox2, prostglandine E2 will go down as well which is an inflammatory hormone often through the roof in Lymies and ME patients.

Thanks for the suggestion.. I'll check into!

JT1024 April 30, 2013 at 10:09 am
snowathlete

That story of not expecting to be positive but finding out that you are, is pretty common. I am being tested and waiting for the results at the moment. I don't expect to test positive, but so many people do that I guess I wouldn't be surprised.

I really hope your treatment works. You may have to try a few things, but given a bit of time you've probably got a good chance of some improvement. One of the papers I read talked about a link bettween Borrelia fragments (where the living organism has been killed off by antibiotics or the immune system) in the joins and continuing to cause arthritis, even after Borrelia was no longer detectable in the blood (dont quote me on that though because my brain is foggy today and it was just something I skim read a while back). I don't think this is the case for everyone though, so hopefully your symptoms will all improve.

A patient from another forum was bed bound and was diagnosed as having ME/CFS. She was quite young and it was so sad she was so debilitated. She tested positive for Lyme also and has been treated for quite some time. She has gone from bed bound to actually having a life! I'm so happy for her and it blows my mind that so many of us have struggled and possibly never tested for Lyme.

I hope your results don't take too long to come back. I also hope it was done at IGenex. I think they are considered the top testing lab for Lyme and co-infections.

Just when you feel like you've learned what you can about your "condition", it seems like more conditions or diagnoses are added on.

kolowesi May 15, 2013 at 8:49 am
snowathlete

Thank you Kolowesi!
Yes, I agree the images are great – its nice to be able to see the little blighters! I'm very grateful to VirusWorld and eyeofscience for letting us use their excellent images.

My IgG came back as 24.6 (I think) recently, which is why I decided to read everything ever published about B19 and ME/CFS! I don't know yet what De Meirleir will prescribe me to fix it.

That sounds interesting. One of the studies above found B19 in the gut, so I'd guess there is some logic to trying to treat that. Does it matter which brand you take – and if it does, then which do you take?

Wow, that's scary high. Hope you get something to address that.

I take either Swanson or Vitacost Colostrum with IgG 40%. There is a more expensive brand, whose name I can't remember, but these feel like they help. Can't tell you why, but I trust the feeling. My body wants it.

kolowesi May 15, 2013 at 9:02 am

Re taking doxycycline

It was a lifesaver for many years for me, then suddenly seemed to make me worse. There was an article in the Townsend Letter
http://www.townsendletter.com/July2010/sapi0710.html

Check out the pictures of the bloom in the round body form of Lyme. I am sure that's what happened to me, but after many years of doxy helping me a lot. My rheumatologist told me that doxy works on the high MMP's (sorry forget what that stands for, but various inflammatory cytokines I think) and I think it helps a lot of people. But some get worse.

I read somewhere that Dr. Klinghardt shoots ozone right into the large joints of some Lyme patients with good results. I don't have money to see him, so use what I can. Antibiotics I take are azithromycin 500 mg (makes Lyme go into cyst form) in the morning and tinidzole 500 mg at night (kills Lyme from the cysts).

For inflammation, I get good results from curcumin phytosome called Meriva. I take 1 g three times a day. It may even have helped cognitive, but it definitely helps inflammation pain. My doctor told me her rheumatoid arthritis patients could tell within 2 hours if they missed a dose, and I can tell as well.

Edit to add, in case you read the Townsend Letter article: I do take Banderol, Samento, Parsley
Burbur and Noni, but only once a day. If I up it to twice, I might eventually be able to go off pharmaceutical antibiotics. Just haven't done it for reasons of cost and likely Herxheimer reactions.

kolowesi May 15, 2013 at 9:36 am

Parvo B-19 found in German heart biopsies

http://jcm.asm.org/content/47/1/106.full

The HHV-6 Foundation used to have an article showing which different viruses were found in heart biopsies from live CFS patients. Sorry I can't find it. Parvo B19 was the most common. Many people had multiple viruses, with the most common other viruses being EBV, CMV and HHV-6. If I remember, in Germany they used IVIG to treat Parvo B19, but it might have been interferon. Luckily, my heart symptoms got way better on valcyte. I did have CMV in the heart most likely because it was in my stomach lining along with enterovirus and my antibodies were 20 times normal.

snowathlete May 19, 2013 at 7:21 pm
kolowesi

Parvo B-19 found in German heart biopsies

http://jcm.asm.org/content/47/1/106.full

The HHV-6 Foundation used to have an article showing which different viruses were found in heart biopsies from live CFS patients. Sorry I can't find it. Parvo B19 was the most common. Many people had multiple viruses, with the most common other viruses being EBV, CMV and HHV-6. If I remember, in Germany they used IVIG to treat Parvo B19, but it might have been interferon. Luckily, my heart symptoms got way better on valcyte. I did have CMV in the heart most likely because it was in my stomach lining along with enterovirus and my antibodies were 20 times normal.

Thanks for the link, that's really interesting. Can't be good having that in your heart muscle. At least one person on these forums that I have spoken to had a heart biopsy which found B19!

snowathlete June 14, 2013 at 3:56 pm

De Meirleir talks about Parvovirus in his recent interview with Deborah Waroff:
http://forums.phoenixrising.me/inde…-meirleir-pt-2-me-cfs-alert-episode-45.23737/

He says that they see a lot of parvovirus B19 (among other viruses such as Herpes) and that the levels are much higher than you get not only in healthy people, but also in people with acute infection with these viruses.
I think that's pretty interesting. My B19 IgG was 24.3 which he told me is high. From my own research, people with accute B19 usually have a reading of 5-10 with less than 5 in healthy people.

snowathlete January 25, 2014 at 10:19 am

Neurological aspects of human parvovirus B19 infection: a systematic review.
Abstract
Rev Med Virol. 2014 Jan 24. doi: 10.1002/rmv.1782. [Epub ahead of print]
Barah F, Whiteside S, Batista S, Morris J.
Parvovirus B19 has been linked with various clinical syndromes including neurological manifestations. However, its role in the latter remains not completely understood. Although the last 10 years witnessed a surge of case reports on B19-associated neurological aspects, the literature data remains scattered and heterogeneous, and epidemiological information on the incidence of B19-associated neurological aspects cannot be accurately extrapolated. The aim of this review is to identify the characteristics of cases of B19-associated neurological manifestations. A computerized systematic review of existing literature concerning cases of B19-related neurological aspects revealed 89 articles describing 129 patients; 79 (61.2%) were associated with CNS manifestations, 41 (31.8%) were associated with peripheral nervous system manifestations, and 9 (7.0%) were linked with myalgic encephalomyelitis. The majority of the cases (50/129) had encephalitis. Clinical characteristic features of these cases were analyzed, and possible pathological mechanisms were also described. In conclusion, B19 should be included in differential diagnosis of encephalitic syndromes of unknown etiology in all age groups. Diagnosis should rely on investigation of anti-B19 IgM antibodies and detection of B19 DNA in serum or CSF. Treatment of severe cases might benefit from a combined regime of intravenous immunoglobulins and steroids. To confirm these outcomes, goal-targeted studies are recommended to exactly identify epidemiological scenarios and explore potential pathogenic mechanisms of these complications. Performing retrospective and prospective and multicenter studies concerning B19 and neurological aspects in general, and B19 and encephalitic syndromes in particular, are required.

© 2014 The Authors. Reviews in Medical Virology published by John Wiley & Sons, Ltd.

maryb January 25, 2014 at 11:29 am

I don't understand how you would get a neurologist to get interested in anyone with ME?

Firestormm January 25, 2014 at 12:29 pm
maryb

I don't understand how you would get a neurologist to get interested in anyone with ME?

I have had plenty of interest – whenever (as with the review above from @snowathlete ) 'neurological manifestations' were suspected. I think we are talking about signs or symptoms that might be explained as opposed to unexplained. Indeed two of my medications were the result of visits to neurologists, and this latest diagnosis of Apnea is from a neurologist – as is the treatment.

So, my point being, that in my case at least, having a diagnosis initially of Parva B did not prevent a neurologist becoming involved especially when inflammation was considered to have occurred, and later when the ME was diagnosed, it didn't prevent them being involved either. I know that's not the same for other people – and to be honest I don't actually consider having a neurologist involved to be as 'comforting' or 'productive' as some might wish it was. I think they are as good/bad as anyone else.

They certainly don't always have the answers – but it's another necessary part of what I call the 'filtration' system. And if anything changes i.e new symptoms occur such as my fitting way back when, I get a referral. The NHS ME Service down here now has a Neurology Specialist as the resident consultant. I am due to see her very soon for the first time – be interesting to see/hear her take on things relating to ME.

maryb January 25, 2014 at 12:56 pm

@Firestormm
the neurologist I saw last year was worse than useless, he seemed totally disinterested when the MRI scan didn't show anything obvious………no scratching of head and a wish to investigate further, a lets try solve this puzzle…….noooooo…….. just typical of my experiences with most consultants in the UK. overpaid, money orientated massive egos, patients last.
You fared better it seems

Firestormm January 25, 2014 at 2:36 pm
maryb

@Firestormm
the neurologist I saw last year was worse than useless, he seemed totally disinterested when the MRI scan didn't show anything obvious………no scratching of head and a wish to investigate further, a lets try solve this puzzle…….noooooo…….. just typical of my experiences with consultants in the UK. overpaid, money orientated massive egos, patients last.
You fared better it seems

I think most physicians are primed to see only what they can see: i.e. signs and via patient reports possible clues as to what might be causing problems. Of course some will miss things, and others may well decide it ain't worth investigating further. We do desperately need something for them to work with – some specific 'marker' that distinguishes ME from other things. But then that still leaves the BIG question mark over treatment. I mean for us it would be a HUGE relief to have something definitive found – but then what?

Without treatment – we are still left with what we have now: basically learning through trial and error how best to manage our lives. Hardly satisfactory. And several of the things I am being treated for could easily – even now – be put down to ME if more becomes known about that disease. But maybe, at least for me, the treatment for Apnea could improve associated symptoms of ME. I mean if it improves my sleep quality, and helps improve my day-time fatigue: then I am not about to complain. But it took me 10 years of asking for a sleep study to get this far – during that time my troubles at night were put down to the ME symptoms of 'sleep dysfunction' or 'unrefreshing sleep'. It's all trial and error – ain't it? :)

snowathlete January 25, 2014 at 3:06 pm

Interesting @Firestormm and @maryb to hear your expeirences.
There is a lot of luck of the draw involved. I was diagnosed by a GP who specialized in ME/CFS and did all the diagnosing at the local NHS ME/CFS clinic in Bath, the closest to were I live. She diagnosed me and said she was certain that's what I had, but as I also had big sleep issues she referred me to a sleep consultant in Oxford and also ordered a respitory study to rule out sleep apnea as apparently it often presents very much the same as ME/CFS. I turned out not to have sleep apnea, but at least it was looked for. Sounds like you Russ, had a much harder time getting the referral for a worthwhile study!

My GP is pretty unwilling to help me, frankly. But I went to see my gastroenteroloist Monday just gone and when I told her about my cognitive dysfunction in passing, she was shocked that no one had even ordered an MRI of my brain, so although it is very unlikely to be anything to do with my colitis, she has ordered one anyway as she says it should be done whatever.

There are good doctors, there are bad doctors.

maryb January 25, 2014 at 3:38 pm

@snowathlete
yes my story is similar, I was referred to the useless neurologist by my lovely ENT (so I guess not all docs are bad) consultant as he was so concerned about me and not being able to help me. My GPs are shockingly bad.

I edited a previous post to say most UK consultants are really poor. My experience is they've all been dismissive of ME, if the very first one , a gastroenterologist I saw within 12 months of getting ill,had taken things seriously, who knows what may have happened.

I do forget about the ENT consultant I see occasionally, nothing he can do for me but he is a very caring doctor and tries his best.

I hope you fare better with the neurologist @snowathlete , I don't know what a clear scan means if they aren't looking at the right things, but what else can we do in the absence of a specialist ME neurologist.

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