Does brain fog ever go away with treatment?

[SOC]

The blood viral volume test I mentioned is called a Quant Realt Time PCR, and the thresholds for seeing viral load is:
CTMV <200 cpies/mL
EBV <200 copies/ mL
HHV6 <500 copies/ mL
so I was below all those reference ranges when I tested in May.

Note that each of these has a dislcaimer that this is a test created by Focus Diagnostics and not cleared or approved by FDA. Whatever that means.

My CTMV IgG was 3.91
HHV6 IgG 1.8 (not sure if its the same test but months ago I measured 8.46 and 7.12 in two different tests for HHV6, last November it was 12.58)
EBV igG 3.41
EBV anti VCA 4.94 (previously 5.42)

I haven't been here long enough to know how this compares to other people's numbers, nor even if this is something people commonly share.

Those are not high, as far as I can tell. Mine are in that range now. Since your IgG's are dropping, that suggests (no guarantees) that your body is not fighting an active infection. It looks like you might be in a recovery phase. I can see why Dr K wants you to rest and see how things go.

 

[Sparrowhawk]

Thanks. I sure hope that is the case. Just going to the doctor this week and getting a two vial blood draw has wiped me out again completely. I felt better last summer about six months after my full collapse, and I guess pushed recovery too hard because after that my GI tract fell apart all winter and it's been dicey ever since. I'm one of those who can't tolerate supplements very well, get nausea, stomach pain. Headaches are back. Keeping the faith here, though and very excited to have found this forum.

On the brain fog topic, that's one of my primary concerns is that I'm not able to concentrate as well as I could perhaps even a few weeks ago. My kids are beginning to tease me about using the word "thingy" to refer to any noun I can't call up at the time I need it (clothes hamper, plate, book, etc.). We'll see how it goes.

 

[SOC]

Thanks. I sure hope that is the case. Just going to the doctor this week and getting a two vial blood draw has wiped me out again completely. I felt better last summer about six months after my full collapse, and I guess pushed recovery too hard because after that my GI tract fell apart all winter and it's been dicey ever since. I'm one of those who can't tolerate supplements very well, get nausea, stomach pain. Headaches are back. Keeping the faith here, though and very excited to have found this forum.

On the brain fog topic, that's one of my primary concerns is that I'm not able to concentrate as well as I could perhaps even a few weeks ago. My kids are beginning to tease me about using the word "thingy" to refer to any noun I can't call up at the time I need it (clothes hamper, plate, book, etc.). We'll see how it goes.

Yeah, that word-finding problem is pretty common.

You should look into the forms of OI as possible reasons for your cognitive problems and feeling crappy. See this article at PR. Low blood volume -- not listed directly in that article -- is one reason for OI-type problems.

 

[Sparrowhawk]

Thanks for that ref. I wasn't aware of that section of PR!

Yeah among my early presenting symptoms was months of pervasive dizzyness and BP that was all over the place. That has seemed to stabilize since I started taking magnesium, now doing mag spray at night.

 

[minkeygirl]

After having a really good weekend I woke up the next morning and it felt like someone had pumped air into my skull and I had major brain fog. Almost like my brain was wrapped in gauze causing me to feel totally drugged.

I'm going into my 3rd week of this and have no clue what caused it. I thought it might be my trazodone so I eliminated it (as much as I could before I went into withdrawal) and I don't think that is it.

It starts during the night and around 2 it starts to get a bit better and by evening I can think clearly although I can feel the fog just nagging by my eyes.

I just got out some Jarrow MethylB12 to start again and I'm going to get some PQQ. I buy stuff from www.pureformulas.com. They have a 30 day return policy with free shipping to return open bottles.

I have a doc appointment mid-september where I'm going to get a ton of labs done, then I'm going to see a naturopath who does the methylation stuff (I got too sick to do it on my own).

I'm scratching my head. One day I'm good, the next i'm a slug.

Minks

 

[Sparrowhawk]

I have a doc appointment mid-september where I'm going to get a ton of labs done, then I'm going to see a naturopath who does the methylation stuff (I got too sick to do it on my own).

I'm scratching my head. One day I'm good, the next i'm a slug.

Minks

Great that you found help for the methylation stuff. I just sent off my 23andme today.

I hear you on widely ranging quality of energy over the days, I call mine "symptom of the week." I can do everything "right" but still wind up with weirdness.

 

[minkeygirl]

Hi Sparrowhawk, I sent my 23andme kit off today.

As much as I know this is most likely my ME, there is still this little nagging thing, what if it isn't? I have zero confidence that my PCP will know what it is which is why I'm not rushing out to get squeezed into a 15 minute appointment when I have so many other issues going on that I need to talk to her about.

I'm in my 3rd week of this. I feel like there is a weight across my eyebrows and I'm underwater. I guess the good part is if I crash, I'm already there.

I"m thinking about tryng PQQ. Nothing to lose really.

Thanks for the support.

Mew

 

[RedLineBoy]

What type of doc diagnosis OI?

 

[RedLineBoy]

Neuro, Endo, Internal? What type of doc to go to?

 

[Sushi]

What type of doc diagnosis OI?

A doc who has studied the autonomic nervous system. There are some who specialize in this -- some cardios, some electrophysiologists, some internists, some neurologists, etc. Basically you need to check some resource like www.potsplace.com (their doctor's list) and find a doctor who has been recommended.

sushi

 

[minkeygirl]

Update: I'm feeling less foggy today and the pressure in my head is 50% if not more gone.

For the last 2 days I took 5000 mcg Jarrow Methyl B in the morning. I let it dissolve over the course of an hour.

I'm going to keep it up and see how it goes. This is huge.

Minks

 

[Fogbuster]

How's everyone's brain fog getting on?

Any supplements to recommend or any positive experiences?

Jamie

 

[minkeygirl]

I recently tried some Green Coffee Bean extract (decaffeinated) to help with my weight loss. I had total mental clarity and felt great.

I had a bad reaction to it though so had to stop. I am going to try a different one to see.

Mink

 

[leokitten]

Is this possible? How can one lose their intelligent and knowledge gain over the years due to viral infection.

Yes, know one knows exactly why but the viruses can infect cell in the brain and likely cause dysfunction. Also it seems like viruses can affect blood flow and circulation in a negative way and this can have a huge impact on your brain since your brain needs a lot of oxygen and nutrients.

If I'm correct then how can so many people have CMV and EBV and not be affected but I am?

Yes almost everyone by the age of 40 has EBV and CMV, and HHV-6 by the age of 2. No one knows exactly what are the root causes of CFS which then cause viral reactivation while in other people the viruses stay latent their entire lives. There are plenty of theories, chronic stress and trauma causing hormone and immune dysfunction setting the stage for a weakened immune system and others. But likely the immune system becomes dysfunctional in some way because these latent viruses are always checking the immune system and waiting for the right signals to reactivate.

How do I get ride of this brain fog so that I can go to school and succeed in life. I know that every time I try or do mental work I feel more fatigue.

Since you know you have CMV and EBV infection you need to have started Valcyte right away! It makes a huge huge difference with the cognitive aspects of CFS for many people.

Anyone have successful career with CFIDS? What do I do? How do I treat the brain fog?

Yes, i'm a scientist and have some neurological and cognitive problems but since treatment they have improved tremendously and I see them continually improving.

I've tried host of supplements to nuvigil and wellbutrin, nothing works.

Get on Valcyte right away

 

[minkeygirl]

Many of us don't have doctors who will write Rx's for us and not many can afford Valclyte.

 

[leokitten]

Many of us don't have doctors who will write Rx's for us and not many can afford Valclyte.

I know, yet he did not state anything about his situation so the best first advice would be Valcyte, it really works.

 

[minkeygirl]

I wasn't able to read his entire message since my brain is a mess also. I have the same viruses he does. No doc to RX. And many can't take because of the side effects.

I know it works but it's a struggle on many fronts.

 

[leokitten]

I wasn't able to read his entire message since my brain is a mess also. I have the same viruses he does. No doc to RX. And many can't take because of the side effects.

I know it works but it's a struggle on many fronts.

Can you travel? There are plenty of doctors on the west coast who will prescribe Valcyte if you have the lab results showing high enough titers.

 

[minkeygirl]

Can you travel? There are plenty of doctors on the west coast who will prescribe Valcyte if you have the lab results showing high enough titers.

Nope can't travel and unless I could get them free or cheap I can't afford them.