Help with new test results: extremely high IgA2 and EBV off the charts!

[Antares in NYC]

Hi everyone,

I would really appreciate it if someone could shed some light on my most recent blood test results. I won't be able to meet my doctor in a few weeks, and I would like to know the significance of my recent tests. Here are the numbers that kept me awake at night:

EBV - after six months taking famcyclovir 500mg 4 times a day, my numbers are even higher than they have been before, some of them totally off the charts!:

• EBV Early Antigen Ab, IgG: 16.9 high (normal range: 0.0 - 8.9 U/ml)
• EBV Ab VCA, IgG: 71.8 high (normal range: 0.0 - 18.0 U/ml)
• EBV Nuclear Antigen Ab, IgG: 27.2 high (normal range: 0.0 - 18.0 U/ml)

The only one that came negative was the EBV Ab VCA, Igm: <36.0 (negative)

Then there was the HHV6 antibodies, also higher than they have been before (even after courses of Valcyte):

• HHV6 IgG Antibodies: 3.32 high (negative <0.76; positive >0.99)

And here's the kicker, a new number that's terrifying me, first time that it appears in any of my blood tests:

• IgA Subclass 2: 91.7 high (normal range: 11.6 - 78.5 mg/dl)

All I have read about high levels of IgA2 is just terrifying. Can anyone with some knowledge on this matter please let me know the implications of this? Is this normal for CFS patients? Could it be related to the fact that I have been taking oxymatrine/Equilibrant for the last month? (I know it can increase auto-immune issues in some people). I don't want to say that I'm freaking out, but I'm freaking out. What now? What else now?

Overall, I feel extremely frustrated and disheartened that after starting treatment in July 2013, not only I have not improved a bit, but it looks like my tests show a worsening of my condition.

As many of you know, I still work, despite my limitations (I have no choice). Today I'm so disheartened I just wanted to stay in bed, and not get out at all.

Any advice would be more than welcome.

PS: as suggested by a senior member of the boards, I wanted to tag @SOC in case she could provide some advice.

 

[Antares in NYC]

One more note: in addition to the antiviral (EBV) and abx treatments (Bartonella, Babesia, cPN), i have been doing methylation and following certain protocols (like avoiding vit D in Marshall). Among the supplements I have been taking since the diagnosis, most of these I take daily except the injectables:

• B12 injectables (because B12 deficiency)
• Magnesium injectables (because severe magnesium deficiency)
• Lyposomal C (because severe C deficiency)
• L-Methylfolate 5 (because of yet another deficiency)
• Pre- and Pro-biotics
  
• N-A-C
• L-Glutathione 250mg
• L-Methionine
• Oxymatrine 200
• Turmeric
• Jarrow Formulas Neuro Optimizer
• Omega-3 Krill Oil 300 mg
• Coq10 w/ BioPerine (100 mg)
• and probably another half a dozen I may be forgetting...

Well, nothing has helped. Nothing has made a difference. Nothing has improved even a bit.
I'm too tired and brain-fogged to be angry, but I'm really angry and disheartened inside. This is a curse. I see no end to this. And the more tests we do, the worse my numbers look.I'm fading slowly, withering away no matter what I do.
What the heck did we do to deserve this fate?

 

[liverock]

The red flag for me in your list is the Marshall protocol. If you have been trying to lower your Vitamin D levels then that could be the cause of your increased EBV levels.

CD8T immune cells are vital in controlling EBV and Vitamin D has shown to increase CD8T immune function. Any deliberate lowering of Vitamin D such as Marshall protocol could weaken the immunity against EBV.

I would suggest a CD8T and Vitamin D test. High EBV and Low Vit D have been implicated in a load of other autoimmune conditions so getting checked as soon as possible may turn up the answer to your problem.

http://www.fasebj.org/content/15/14/2579.full

http://forums.phoenixrising.me/inde...-d-deficiency-and-steps-to-autoimmunit.21066/

 

[Antares in NYC]

The red flag for me in your list is the Marshall protocol. If you have been trying to lower your Vitamin D levels then that could be the cause of your increased EBV levels.

CD8T immune cells are vital in controlling EBV and Vitamin D has shown to increase CD8T levels. Any deliberate lowering of Vitamin D such as Marshall protocol could weaken the immunity against EBV.

I would suggest a CD8T and Vitamin D test, including testing for any CD8T genetic mutations. High EBV and Low Vit D have been implicated in a load of other autoimmune conditions so getting checked as soon as possible may turn up the answer to your problem.

http://forums.phoenixrising.me/inde...-d-deficiency-and-steps-to-autoimmunit.21066/

Hi Liverock, thanks for your reply.

I do have vitamin D deficiency to boot. In total, I'm deficient in C, D, B12, B6, Magnesium; three colonoscopies and two endoscopies by different doctors could not find any reason for this. All normal, apparently, and despite the random bouts of profuse bleeding that happen every few months. Nothing. One of the doctors chuckled at the idea of "leaky gut", and told me there's no such thing. Sigh.

For instance, in 2012 my D deficiency was as follows: VITAMIN D,25-0H, TOTAL: 17L (normal levels: 30-100 ng/mL). These severe vitamin deficiencies started in 2009, and levels varied since then, but always either extremely low or borderline.

I stopped taking D supplements last February as I read extensively about the Marshall Protocol and wanted to give it a try. Like most of us dealing with this curse, we experiment a lot, trying to find out if anything can make a difference. In my case, nothing has made a dent. Nothing. And I don't feel any better doing Marshall or methylation as I did before trying them.

Based on your comment, I will certainly reconsider and start supplementing vit D again, but to be fair, I did not feel any better or worse when I was taking D. I hope it helps reducing the EBV levels, as you indicated. Hopefully that would improve things. Thanks for your help.

 

[Antares in NYC]

Hi Liverock,

I just read the article you posted on autoimmunity, and something else caught my attention:
not only I do have that awful collection of vitamin deficiencies, but my HNK1 (CD57) panel is also extremely low. Here you have my numbers:

• %CD8-/CD57+ lymphs: 1.8 Low (normal % 2.0 - 17.0)
• Abs. CD8-CD57+ lymphs: 40/uL Low (normal 60 - 360 uL)

These numbers seem to coincide with the chain reaction that the article explains.

 

[Aerose91]

Hey Antares, I'm really sorry to hear about your condition. I can't be of much help to you but i will mention that after 6 months on Valcyte my HHV-6 titres went up as well. I see Dr Enlander and he had no explanation for it.

 

[maddietod]

My vitamin D count was always right around 30. I took pills that didn't help, then drops, 4,000 IU daily, that didn't help. Finally I took a prescription of 50,000 IUs once a week (I forget how many months it took) to increase it. It's now 85, and I'm back on the drops.

My doctor won't start antiviral treatment until B12 and D levels are normal.

 

[Antares in NYC]

Hey Antares, I'm really sorry to hear about your condition. I can't be of much help to you but i will mention that after 6 months on Valcyte my HHV-6 titres went up as well. I see Dr Enlander and he had no explanation for it.

I had to stop taking Valcyte after two months, The side effects were terrible (severe insomnia, restlessness, anxiety, tremors). It was too much.

After fighting my insurance for months to approve Valcyte, then I couldn't tolerate it. Isn't that like my life!

 

[Aerose91]

I didn't have any side effects though I'm aware of lots of people who did. However it had zero effect- not sire if it was the Valcyte that brought my HHV-6 up or something else but weird that the only time it raised was when I was on the pill

 

[liverock]

I stopped taking D supplements last February as I read extensively about the Marshall Protocol and wanted to give it a try. Like most of us dealing with this curse, we experiment a lot, trying to find out if anything can make a difference. In my case, nothing has made a dent. Nothing. And I don't feel any better doing Marshall or methylation as I did before trying them.

Based on your comment, I will certainly reconsider and start supplementing vit D again, but to be fair, I did not feel any better or worse when I was taking D. I hope it helps reducing the EBV levels, as you indicated. Hopefully that would improve things. Thanks for your help.

Vitamin D and magnesium work in synergy which means taking Vit D without having adequate magnesium intake is a waste of time. This is why all those who complain that they cant get their Vit D levels up despite high doses of Vit D are wasting time without adequate magnesium,

http://www.huffingtonpost.com/carolyn-dean-md-nd/bone-health_b_1540931.html

In your case it might be be better getting your Vit D supplementation and monitoring through your doctor to get your levels up as quickly as possible.

You should ask your doctor to give you initially a large dose of D3(notD2!) and magnesium and monitor Vit D levels until your up to at least 50ng/ml.

 

[maddietod]

Vitamin D and magnesium work in synergy which means taking Vit D without having adequate magnesium intake is a waste of time. This is why all those who complain that they cant get their Vit D levels up despite high doses of Vit D are wasting time without adequate magnesium,

http://www.huffingtonpost.com/carolyn-dean-md-nd/bone-health_b_1540931.html

In your case it might be be better getting your Vit D supplementation and monitoring through your doctor to get your levels up as quickly as possible.

You should ask your doctor to give you initially a large dose of D3(notD2!) and magnesium and monitor Vit D levels until your up to at least 50ng/ml.

And also, even with taking magnesium, and having normal blood levels of magnesium, it can be hard to increase vitamin D levels.

 

[Antares in NYC]

Vitamin D and magnesium work in synergy which means taking Vit D without having adequate magnesium intake is a waste of time. This is why all those who complain that they cant get their Vit D levels up despite high doses of Vit D are wasting time without adequate magnesium.

I do already have to inject magnesium twice weekly, because of my magnesium deficiency. Hopefully resuming D3 supplementation would help. I will definitely have my doctor monitor it and see if it makes a difference.

 

[liverock]

And also, even with taking magnesium, and having normal blood levels of magnesium, it can be hard to increase vitamin D levels.

Thats right, if a person has a lot of inflammation most of the absorbed Vitamin D goes to tackling the inflammation not raising the serum levels. Similar to trying to charge up a flat battery with the car headlights on.

 

[liverock]

I do already have to inject magnesium twice weekly, because of my magnesium deficiency. Hopefully resuming D3 supplementation would help. I will definitely have my doctor monitor it and see if it makes a difference.

Do you mean by this that you will self medicate Vitamin D? I dont think this is wise as you will need high amounts of Vit D supplementation to get your level up to 50ng.
I had to take 5,000 units/day for 2 years to get from 20ng to 43 ng as an example. Your doctor with your lower levels should probably give you a 50,000units/week dosage especially with all that inflammation you probably have.

 

[Antares in NYC]

Do you mean by this that you will self medicate Vitamin D? I dont think this is wise as you will need high amounts of Vit D supplementation to get your level up to 50ng.
I had to take 5,000 units/day for 2 years to get from 20ng to 43 ng as an example. Your doctor with your lower levels should probably give you a 50,000units/week dosage especially with all that inflammation you probably have.

I think I specified that I will have my doctor monitor this.
Same doctor that prescribes me the injectable magnesium and B12 shots twice a week. Thankfully I'm in the hands of a good CFS doctor, but I know they all are frustrated against a disease that seems like an untameable monster, and the obscene lack of resources they get to do proper research.

 

[heapsreal]

What about immune mods like immunovir which can help increase nk and t cell numbers/function.
Also thought of trying another antiviral, famvir, generally alot easier to tolerate then valcyte. Maybe down the track after being on another antiviral, valcyte will be easier to tolerate???

 

[Antares in NYC]

What about immune mods like immunovir which can help increase nk and t cell numbers/function.
Also thought of trying another antiviral, famvir, generally alot easier to tolerate then valcyte. Maybe down the track after being on another antiviral, valcyte will be easier to tolerate???

Hi Heaps! I actually take famvir 500mg four times a day since last July. We tried the Montoya protocol in December by adding Valcyte, after a long fight with my insurance, which denied it time and time again.
Unfortunately the Valcyte was intolerable. Brutal side effects. Had to abandon it within two months. It also messed up my liver levels, at which point my doctor instructed me to stop Valcyte right away. Nasty, nasty drug, if you ask me.

 

[heapsreal]

Hi Heaps! I actually take famvir 500mg four times a day since last July. We tried the Montoya protocol in December by adding Valcyte, after a long fight with my insurance, which denied it time and time again.
Unfortunately the Valcyte was intolerable. Brutal side effects. Had to abandon it within two months. It also messed up my liver levels, at which point my doctor instructed me to stop Valcyte right away. Nasty, nasty drug, if you ask me.

Is the famvir helping at all??

 

[Antares in NYC]

Is the famvir helping at all??

Unfortunately, I can't tell a difference before and after the Famvir. Nothing seems to make a dent.

Actually.... now that you mention it, the only, and I mean only thing that has improved a little was my sleep patterns: about a month ago I started heavy ABX prescriptions with plaquenil for the multiple co-infections in my system, and also started taking klonopin, melatonin, and 5-HTP 100mg . Not sure if it's due to the combination of all these drugs, or just to one in particular, but my sleep has improved a tiny bit. Now I get a good 1 or 2 nights of semi-restful sleep per week. Keep in mind I haven't had a good night of sleep in over 14 years. This minor improvement in sleep patterns is a positive development. I'll take it!

Unfortunately, nothing else has improved despite the many medications, supplements and protocols: brain fog, memory and concentration impairments, crushing fatigue, joint and muscle pain, nausea, etc... they remain just as bad as they have been for over a decade.

The worst thing is still the cognitive impairments. Still as bad as they were from day one.

I few weeks ago I was reorganizing a bunch of old crap around the apartment to put it in storage. Considering my ME/CFS, this took a few weekends to accomplish. Ugh. Anyway, I came across a folder from 1997, right before I fell ill with CFS when I lived in Boston. In that folder I found the letter of admission to the MIT Media Lab to continue my postgraduate studies, and my application to Harvard evening school. I have to confess, Heaps, that I cried like a baby.
First of all, I had completely forgotten that I had applied to both MIT and Harvard, and that I was admitted to MIT. That's how bad my memory is; these events felt alien to me, as tiny remnants of somebody else's life. Truly scary.

Secondly, it hit me deeply and sadly how different my life would have been if I had not fallen so ill that year, if I had been able to complete the MIT program... This illness is a cruel, cruel b*tch, pardon my French.

If I had to choose one thing to recover, that would be my brain. I would rather deal with the crushing fatigue, the crashes, the IBS, the unresting sleep, the joint and muscle pain, than this constant mental stupor. I just wish I had my brain back, my mental acuity, the memories of my life that keep vanishing away at an alarming pace. I feel that at least I would have a fighting chance.

 

[Aerose91]

If I had to choose one thing to recover, that would be my brain.

x1000