Where do I go from here?

[Aerose91]

I'm wondering what the next steps are that I should take- I have been seeing DR Enlander now but I am not one to sit still and just wait especially since I feel there are more avenues to cover.

So far I have received a;

lumbar puncture which came back normal

MRI and MRA were normal

SPECT scan showed a LOT of hypo perfusion and brain toxicity as well as signs of dementia (I'm 29)

ANA, C-reactive protein and all autoimmune tests are negative

ESR is 5. Pretty low I guess

NK function is 4

Lyme tests are negative

Positive titers for EBV, HHV-6, Parvovirus B19, M. Pneumoniae

Coxackie B tests came back negative


I have been on Valcyte and Hepapressin now for about 2 months as well as LANK for my NK cells. Also just a good cocktail of nutritional supplements.

I'm wondering what else I should be investigating though because I know there's more pieces to this puzzle. I'm curious about seeing DR Chia to get tested for enteroviruses and I know XMRV is a big player, but how do I get tested for that? Also, I have heard that igenex is the only reliable lab for Lyme disease so I'm curious if I should investigate that too. Also, I know IVIG can help with Parvo but how do I find out if I'm eligable for that?

I am in very, very bad shape and have been declining since the onset of this 8 months ago despite my perfect diet, resting, etc.. I know your best chances are to get a treatment underway as soon as possible so I don't want to wait. I like DR enlander but I don't necessarily feel like he is agressive enough. My brain is in bad, bad shape and I need something to stop this progression

Thanks for any help

 

[Sushi]

I'm wondering what the next steps are that I should take- I have been seeing DR Enlander now but I am not one to sit still and just wait especially since I feel there are more avenues to cover....

Lyme tests are negative

Positive titers for EBV, HHV-6, Parvovirus B19, M. Pneumoniae
I have been on Valcyte and Hepapressin now for about 2 months as well as LANK for my NK cells. Also just a good cocktail of nutritional supplements.

I'm wondering what else I should be investigating though because I know there's more pieces to this puzzle. I'm curious about seeing DR Chia to get tested for enteroviruses and I know XMRV is a big player, but how do I get tested for that? Also, I have heard that igenex is the only reliable lab for Lyme disease so I'm curious if I should investigate that too. Also, I know IVIG can help with Parvo but how do I find out if I'm eligable for that?

I am in very, very bad shape and have been declining since the onset of this 8 months ago despite my perfect diet, resting, etc.. I know your best chances are to get a treatment underway as soon as possible so I don't want to wait. I like DR enlander but I don't necessarily feel like he is agressive enough. My brain is in bad, bad shape and I need something to stop this progression

Thanks for any help

You say Lyme (Borrelia) tests are negative--by what testing? IgeneX is not the only reliable testing, in fact, some of us think that there are better methods, though IgneneX is better than the usual tests given. Were you also tested for Bartonella and if so, how?

XMRV has been pretty thoroughly discredited as far is causing disease. It was shown to be a lab contaminate.

GcMAF could help you if your testing doesn't make it a poor choice for you. That is, GcMAF in combination with other things. (How are your inflammatory cytokines?) LDN helps maybe half of us if you haven't tried it.

Are you working with methylation? How are your heavy metals and other toxic elements?

Just a few thoughts.

Best wishes,
Sushi

 

[Aerose91]

Oh yes I forgot I've been on LDN for about a month also. So far nothing has stopped or slowed the progression of my brain deteriorating.

The Lyme tests I had done were just blood tests done at quest. They didn't test my blood for Bartonella but they did that and Lyme in my spinal fluid and both came back negative. Again though, this was at Yale hospital so I don't know how reliable these tests are.

Good to know XMRV is kind of obsolete

What is GcMAF? I hear a lot about it but don't know what it is

I've had heavy metals tested about a year ago during my adrenal fatigue and they are fairly high by I have been on a supplement protocol for them ever since. Methylation I haven't investigated- is there a test for function?

 

[SOC]

@Aerose91~
Wow, your lab results are a lot like mine, but I haven't had a SPECT, MRI, or lumbar puncture.
This is what has helped so far:
Valcyte for HHV6
Valtrex for EBV
Equilibrant for Coxsackie (which you don't have), but it took care of Parvo B19, too.

My daughter had low NK cell function and number and was advised to take inosine. We don't know if it's done anything yet, but Paradise Herbs High ORAC Energy Greens seems to be improving our NK cell function. It's probably the medicinal mushrooms in it. AHCC might have the same effect.

XMRV is a non-player. It turned out to be a lab contaminant.

IVIG might be overkill for Parvo, but if you have hypogammglobulinemia also, it might be worth looking into. You can get IgG, IgM, IgA and IgG subsets test to find out about hypogammglobulinemia. Given your multiple infections, it might be a good idea. IVIG (or other forms of IG administration) is standard treatment for hypogammglobulinemia, so that would be the easiest way to get it, I'd think.

Do you have any OI symptoms? That might be another avenue to investigate.

 

[Aerose91]

I don't know if I've had cytokines tested, I don't think so. Is that what the test would say? Inflammatory cytokines?

 

[Aerose91]

You guys are great, thank you so much.

I forgot I was on valtrex for about 2 months when this first began but I don't know if it helped at all.

I was curious about the SPECT and thought it would how something but I didn't think it would e as bad as it was. The doctor said mine was the worst brain he's ever seen for someone my age Never want to hear that.

For these other tests- they all sound great but can I ask DR enlander to do them? To be honest I had to beg him or the valcyte because of how bad I am- he wasn't going to put me on it off the bat. I really want to take an aggressive stance here.

I think I asked this on a different forum but is it safe to take Equilibrant alongside valcyte? And if I haven't tested positive for any enteroviruses? (Which is why I am considering chia to get everything tested that I can)

 

[Aerose91]

I have POTS, and my BP is pretty low but not horrendous. I wear a HR monitor all the time to keep my HR in check but I don't know how to necessarily tell if I'm having OI. Honestly? My brain is so dissociated and checked out that it's very very hard for me to be able to monitor what happens due to what, but I'm doing my best

 

[SOC]

I have POTS, and my BP is pretty low but not horrendous. I wear a HR monitor all the time to keep my HR in check but I don't know how to necessarily tell if I'm having OI. Honestly? My brain is so dissociated and checked out that it's very very hard for me to be able to monitor what happens due to what, but I'm doing my best

Any treatment for POTS? Florinef and a med for tachycardia helped me some with fatigue (not PEM), cognitive problems, and just being more functional. It wasn't huge, but definitely noticeable. My BP was not low. Not all types of OI have low BP.

Your symptoms sound like they could be the direct result of the encephalitis. Have you seen a neurologist? Do you know what infection caused the encephalitis?

 

[Sushi]

Oh yes I forgot I've been on LDN for about a month also. So far nothing has stopped or slowed the progression of my brain deteriorating.

The Lyme tests I had done were just blood tests done at quest. They didn't test my blood for Bartonella but they did that and Lyme in my spinal fluid and both came back negative. Again though, this was at Yale hospital so I don't know how reliable these tests are.

Good to know XMRV is kind of obsolete

What is GcMAF? I hear a lot about it but don't know what it is

I've had heavy metals tested about a year ago during my adrenal fatigue and they are fairly high by I have been on a supplement protocol for them ever since. Methylation I haven't investigated- is there a test for function?

Methylation panel: http://www.europeanlaboratory.nl/ (NJ branch. Doc faxes request for kit. Results indicate whether you have a methylation block.) Dr. Enlander knows about this test but may not be able to order it as docs in NY are restricted as to what tests they can order.

GcMAF: (quoted from GcMAF.eu)

In a healthy person your GcMAF acts as a “director” of your immune system. But viruses and malignant cells like cancer (and other pathogens--Sushi's note) send out an enzyme called Nagalase that prevents production of your GcMAF....
What is GcMAF?
It is a human protein....
GcMAF is therefore a replacement therapy for those who can’t make their own. Taking GcMAF replaces the missing part of the immune system....

Protocols that help you remove heavy metals can add to feeling like crap, so that is a consideration. Also, if you are trying to chelate mercury, you might want to read more about it here as there are some methods of attempting this that are counterproductive.

Best,
Sushi

 

[taniaaust1]

As SOC said, make sure you are getting your POTS treated well or otherwise that can badly be affecting your brain.

There are so many different things which can affect our brains.. eg intollerance to something you are taking?

One thing which affected my brain was I had molybdenium deficiency (I found that out throu hair testing). My ability to add up simple numbers in my head (something I hadnt been able to do for years) was suddenly there again after only 5 days of supplementation of it. (I dont suggest randomly trialing out supplements unless a test of some kind has shown you may need it but for a hair test leading me to knowing about this essential trace mineral deficiency and then supplementing it was a big improvement for me ).
...................

I suggest also for you to get some 23andME testing done.. which will then help you know your various gene issues and hence help guide you when it comes to gene mutations and supplements you may need. We tend to have many gene mutations, sometimes bad ones which an be affecting. If you are worried about dementia it will also tell you your risk factor based on your genes (mine is much higher then normal.. at 40% dementia risk).

With this DNA testing you dont need drs referal, just look up 24andME online (one sends in ones saliva for the DNA testing and once you have all your results you can get further results by running your raw DNA data throu geneticgenie site which then will tell you your methylation gene issues and your detox gene issues). It will help according to your DNA mutations, tailor what you should be doing diet and supplement wise and if you need changes to this (what is healthy diet wise for one, may not be good for another!!)

 

[Aerose91]

How do I know if I have OI? Like I said my BP is pretty stable usually but sometimes my heart rate shoots up when I stand. However I don't feel any better laying down vs standing. Nothing has ever changed the state my brain is in- no fluctuations at all.

SOC- I was thinking the whole time that this was a direct correlation of the encephalitis so I was admitted to Yale neurology for 4 days where they did a whole battery of tests and ultimately told me im a psych patient. I do believe there's some damage left behind by the E but by far the worst problems I've had have been severe reduction in my brain function from PEM which has been permanent so far.

They never found out which virus it was that caused the encephalitis because I went to the hospital too late. They tested my spinal fluid for HSV and Lyme and EBV and a bunch of others but I so aye suspected it was HHV-6 that caused it since that's also a major player in ME. That's also why I'm on the valcyte now because I have titers to hhv-6 and that makes the most sense that that may have been the virus. I guess ill never really know.

 

[Aerose91]

Is 23andMe reliable testing? I mean, would it be better to have that done at a doctor? I don't have much money anymore.... at all but I would definitely like to know that the results would be accurate

 

[Hip]

Coxackie B tests came back negative

Did you take this test at ARUP Lab? If not, then your negative result is meaningless, in that no other commercial lab blood test apart from ARUP's can detect chronic coxsackievirus B infections in ME/CFS patients.

 

[Hip]

Note that if you were positive for chronic coxsackievirus B or echovirus, Dr John Chia has found that oxymatrine pills provide significant improvement in around 25% of cases (although Dr Chia suggests that patients with autoimmune tendencies should not take oxymatrine).

More info:
Dr Chia: Oxymatrine
Oxymatrine, Autoimmunity, ME/CFS and FM

 

[Aerose91]

Did you take this test at ARUP Lab? If not, then your negative result is meaningless, in that no other commercial lab blood test apart from ARUP's can detect chronic coxsackievirus B infections in ME/CFS patients.

Nope. Quest labs through Dr Enlander. How would I go about getting an ARUP lab test?

 

[Hip]

Nope. Quest labs through Dr Enlander. How would I go about getting an ARUP lab test?

The ARUP coxsackievirus B and echovirus tests are here:
http://ltd.aruplab.com/tests/pub/0060055
http://ltd.aruplab.com/tests/pub/0060053

Both coxsackievirus B and echovirus are the enteroviruses strongly linked to ME/CFS.

I am not sure how you order these, as I have not taken these tests myself (as ARUP do not accept blood samples from outside the US). I read that they can be ordered through LabCorp, or through ARUP directly.

Of course, you could if you want to bypass the enterovirus testing, and just try the oxymatrine treatment directly. This is what I did (unfortunately in my case I found oxymatrine did not help).

 

[SOC]

How do I know if I have OI? Like I said my BP is pretty stable usually but sometimes my heart rate shoots up when I stand. However I don't feel any better laying down vs standing. Nothing has ever changed the state my brain is in- no fluctuations at all.

If your heart rate shoots up on standing, that's a very good reason to further investigate OI, especially POTS. OI can definitely cause some cognitive problems. I didn't feel better lying down vs standing, either, but I have OI associated with low blood volume. Treatment with Florinef and a tachycardia med helped quite a bit.

SOC- I was thinking the whole time that this was a direct correlation of the encephalitis so I was admitted to Yale neurology for 4 days where they did a whole battery of tests and ultimately told me im a psych patient. I do believe there's some damage left behind by the E but by far the worst problems I've had have been severe reduction in my brain function from PEM which has been permanent so far.

How can you be "just a psych patient" with the kind of abnormalites that showed up in your SPECT scan and a history of encephalitis? I think I will NEVER understand the kind of logic many doctors use.

They never found out which virus it was that caused the encephalitis because I went to the hospital too late. They tested my spinal fluid for HSV and Lyme and EBV and a bunch of others but I so aye suspected it was HHV-6 that caused it since that's also a major player in ME. That's also why I'm on the valcyte now because I have titers to hhv-6 and that makes the most sense that that may have been the virus. I guess ill never really know.

HHV6 sounds like a good guess, alright. Let's hope the Valcyte helps. Make sure you drink a lot of water and get a LOT of rest while you're taking Valcyte.

 

[Aerose91]

I know, it's very insulting when you are so sick and doctors tell u it's all in your head.

Per low blood volume and OI issues- is that something that can be measured by a cardiologist? I've been thinking of seeing one but don't know if I need someone specialized in autonomic dysfunction

Thanks so much for all the help too, guys I really need it

And for the oxymatrine- is that safe to add on top of valcyte and hepapressin? I don't know if either of those would interact with anything

 

[Valentijn]

Is 23andMe reliable testing? I mean, would it be better to have that done at a doctor? I don't have much money anymore.... at all but I would definitely like to know that the results would be accurate

It's pretty reliable ... 99% accurate.

I doubt you'd be able to afford that sort of extensive genetic testing from another source. But for what it's worth, my naturopathic doctor recommended that I get it, to help get a look at what might be going on.

 

[Hip]

And for the oxymatrine- is that safe to add on top of valcyte and hepapressin? I don't know if either of those would interact with anything

I am not aware of any interactions or contraindications between oxymatrine (aka Sophora flavescens root extract) and Valcyte or Hepapressin (aka Nexavir / Kutapressin).



By the way, if you say you are suffering from a touch of psychosis symptoms after your encephalitis, I can recommend a number of useful drugs and supplements that may be helpful (because they worked for my own mild psychosis symptoms, which manifested for many years after I was hit with viral meningitis):

Very low dose amisulpride 12.5 to 50 mg daily — this drugs works pretty well.
N-acetyl-glucosamine 1000 mg (or more) twice daily — one of the best supplements.
Flaxseed oil one level tablespoon (15 ml) daily (more may cause diarrhea).
Vitamin C powder 3 grams, taken three times daily — much cheaper in bulk powder.
Phosphatidylserine 300 mg once or twice daily (works best with omega 3 oil) — much cheaper if you buy in bulk powder.
Niacinamide (a form of vitamin B3) 1000 mg twice daily.

I discovered that the above medications had anti-psychosis effects by trial and error: I was trying hundreds of drugs and supplements to see which would help, and all the above I found helped lower / eliminate my psychosis symptoms.

Note that amisulpride you'd expect to be helpful for psychosis, because it is in fact an anti-psychotic drug. Though in this very low dose regimen (12.5 to 50 mg daily), amisulpride is considered to be an antidepressant drug (amisulpride works differently at very low doses). Nowadays I take amisulpride mainly for its antidepressant action, but I find its ability to help normalize an aberrant mind and mild psychosis symptoms very useful too.

Note that amisulpride is classed as an atypical anti-psychotic, not a classical anti-psychotic. Atypical anti-psychotics are second and third generation drugs that have a better safety profile that the classic first generation anti-psychotics. And note that at these very low doses, safety is further increased. Very low dose amisulpride is also generally useful in ME/CFS: I started a thread on amisulpride for ME/CFS HERE.

I hope this is helpful. I went through this state of mild psychosis and mental aberration for quite a few years, and I know how unpleasant it is, and that's why I found these supplements and drugs a real benefit.