Discussion in 'Phoenix Rising Articles' started by Mark, Apr 24, 2013.
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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.
Good article, thanks.
I wonder if the Hornig study will be looking at pathogens in the gut, not just in the blood.
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
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.
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.
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
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.
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!
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?
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.
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.
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.
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.
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!
Hi, you can have a look at this:
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.
Sorry to hear about your knee. I hope it get's better soon. Is it related to your infections? Lyme perhaps?
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.
You can also try a Google Site Search
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