Any have chronic fatigue?

[gardenmom5]

Experiences? Treatment? 

My EB antibodies were off the chart - the lab originally ran the wrong test.  The correct one still blows the top off the chart.  She's never had a patient so high.  (But she's young.)

So starting antivirals.  We'll retest in mid/late January. 

Good news is a lot of my health stuff could link to this.  Or at least dealing with this could make them easier to treat. 

[Spryte]

I did, among other things.  Treatment was a mixed bag because the CFS was one thing among many, so I’m not sure my experience will be helpful - I did a combo of anti-virals, abx, and loads and loads of supplements.  Did I say loads?  Loads.

What I do have for you is ... hope.  We did get it under control.

Oh!  And at one point, I could not function at all, and Provigil was a life saver that got me through the worst of it.

 

[popmom]

I am on Acyclovir. It has helped me so much. My brain fog pretty much disappeared. I still have occasional crash days. And I still don't feel rested or refreshed when I wake up in the morning. But I'll take it. The brain fog was terrible. I was scared to drive some days.

What kind of doctor made your diagnosis? I was diagnosed by a psychiatrist. No bloodwork. He said bloodwork doesn't usually pick it up unless you are in the middle of a serious flare. 

 

Edited November 30, 2020 by popmom

[JumpyTheFrog]

I had what some people call "adrenal fatigue" that eventually worsened into CFS. I was sick for about nine years and have been better for the last four years. I tried so many things over the years, many of which I'll never know if they helped.

Here are some of the things that definitely made a difference:

-salting my water when I had frequent issues with feeling lightheaded

-Drinking Vega One protein shakes once or twice daily for two years. (They have since changed the formula and when I last tried it two years ago it no longer tasted good.)

-Going from being gluten and dairy-free to grain-free, including avoiding corn and canola oil.

-Although I didn't really try this until I had improved enough to be in normal health again, NuMedica Micelleized D3 drops helped me feel better when other brands of D3 didn't seem to have any effect. I began taking 7-10,000 units per day. (No vitamin D3 testing to prove any change in numbers.)

 

Other things I tried when very ill:

-So many supplements, especially for my "adrenal" problems

-Vitamin IVs

-herbs for gut dysbiosis

-treatment for tapeworms and another possible parasite

-progesterone cream

-gabapentin for sleep

-Valtrex for treating HHV6

[JumpyTheFrog]

Here's a link to two posts from 2017 about things I tried over the years. I am even better today that when I wrote that post.

[popmom]

Here is a link to a thread I started back when I was first diagnosed. 

Quote

 

 

[JumpyTheFrog]

Phoenix Rising is the forum I used to visit.

[Spryte]

My supplement list looked a lot like Jumpy the Frog’s, of course both our lists are probably much longer.  I can’t remember it all. My “adrenal fatigue” worsened into full on Addison’s.  I still obviously treat for that.  Jumpy’s post made me think of that, though, if you have a lot of salt cravings or darkening of the skin in folds, keep an eye on it.  I think you have a really good doc, so that won’t be a problem, I just thought I should mention it.  

[gardenmom5]

3 hours ago, popmom said:

I am on Acyclovir. It has helped me so much. My brain fog pretty much disappeared. I still have occasional crash days. And I still don't feel rested or refreshed when I wake up in the morning. But I'll take it. The brain fog was terrible. I was scared to drive some days.

What kind of doctor made your diagnosis? I was diagnosed by a psychiatrist. No bloodwork. He said bloodwork doesn't usually pick it up unless you are in the middle of a serious flare. 

 

I was diagnosed by a naturopath.  Last summer she ordered the EB reactive? test - and the lab ran the wrong one.  They ran the antibody test.  (my antibodies were very high).  But it doesn't tell you if the infection is active - and that's why she wanted the reactive test - it tells you how many virus particles are replicating.  We ran it the end of Oct (she was very explicit in which test she wanted run - and spelled it out! - the results still came in the wrong form, but the correct test was run), but because I was out of town, I only got the results today.   It's very high too.  She said she's never had a patient with the reactive test as high as mine.

She's starting me on ValACYClovir today.  She said to start on one gram, them after a few days, increase to two grams.  She also started me on Biofilm -phase 2, which breaks down the "covering" (for want of a better word) of the viri so the rx can kill it more efficiently.  (I'm looking for other sources.).   She was warning me about side-effects.  The Pharmacist said "oh, there aren't side effects" . . . yeah, I'll trust the ND.  I have a history of having strange reactions to things that most people don't react to . . . . My ND said to message her back in a couple weeks, and if I'm having side effects, she has things that can help calm them down.  Otherwise, we'll redo blood work in 6-8 weeks to see if it's working.

I'm glad to hear you're doing better.  based on my history - we think I've been fighting this for more than twenty-years.  This has been my "normal" for a very long time.  It gives me hope.

 

2 hours ago, JumpyTheFrog said:

I had what some people call "adrenal fatigue" that eventually worsened into CFS. I was sick for about nine years and have been better for the last four years. I tried so many things over the years, many of which I'll never know if they helped.

Here are some of the things that definitely made a difference:

 

She thinks this caused my adrenal fatigue. - and a few other things.  (we reran my 24 hr saliva test. - it was lower than a few years ago when it was run.  I'm also more symptomatic now.  all my muscles locking up and "convulsing" are the worst.  But that's improved - though still happens.)  I periodically  take adrenal cortex.  I can't take it every day, but if I'm taxing them, it helps immensely.

There are other health issues that only started after we think this started.  (I had a horrific viral infection 25 years ago, possibly adnovirus - my health has never been the same.)

I'm glad to hear people are having positive outcomes with treatment.

[BeachGal]

The biofilm treatment sounds interesting. Together with the anti-viral, it could be very helpful. Is it the one that has black cumin seed? If so, black cumin seed might also help with Covid recovery. It’s an old-timey treatment in some parts of the world.

Does magnesium help at all with your muscle locking and convulsions?

[gardenmom5]

2 minutes ago, BeachGal said:

The biofilm treatment sounds interesting. Together with the anti-viral, it could be very helpful. Is it the one that has black cumin seed? If so, black cumin seed might also help with Covid recovery. It’s an old-timey treatment in some parts of the world.

Does magnesium help at all with your muscle locking and convulsions?

This is the biofilm - it's for more "advanced" biofilms.  (re: harder to breakdown.)  yes, it has the black cumin seeds.  (alpha lipoic acid, and bismuth subnitrate).  Supposed to help with lupus too.   I'm wondering if it will help my chronic sinusitus . . . maybe even my ear.   The PA who worked with the ENT was less than helpful (I hate kaiser), and referred me to an audiologist claiming I have nerve damage.  except - some days it's ok, some days it's worse - some days it's the OTHER ear!  doesn't sound like nerve damage to me.

Magnesium doesn't make a difference.  and I had been taking it when they started.   Reducing my thyroid rx (which also left me more hypo), helped . . . .   the adrenal cortex is helping too (though i have other issues if I take too much.  it's a fine line.)

[BeachGal]

Let us know if the biofilm treatment helps. It looks interesting.

What’s up with your ears? 

[gardenmom5]

1 hour ago, BeachGal said:

Let us know if the biofilm treatment helps. It looks interesting.

What’s up with your ears? 

I now have tinnitus in my right ear, and it will frequently be "muffled" like there is fluid behind the ear drum.  Supposedly, there is no fluid.  But when I went in was right after I did six weeks of antibiotics (including IV).

eta: and the biofilm is in tandem with the anti-viral.   I've done something similiar with candida.  I was taking a sup that breaks down the yeast shell so the treatments can kill the yeast.  I don't think I ever did it long enough - though there was improvement.

Edited December 1, 2020 by gardenmom5

[Slache]

Since 2006. Are you familiar with spoon theory?

[TravelingChris]

OF course,  since college when I developed my first auto-immune disease

It has gotten progressively worse.  Yes- I abide by the spoon theory.  Also I am on some medications to help-both medrol low dose and arcicept (which seems to work better for lupus than for alzheimers).

[gardenmom5]

1 hour ago, Slache said:

Since 2006. Are you familiar with spoon theory?

ah - I remember when I was recovering from my eye infection from h3!!, (my health has never been the same - that's what sparked this dr to do the early antigen test) I was asked to pick up girls from girls camp.  I knew it was in the mts - and I asked how long it took to drive there. (just over an hour.)   The person assumed it was just a "would this fit in my schedule for that day" type question.  No, it was a "I can drive for 20 minutes - 30 if I push it before I'm sick and have to stop and rest my eyes and my body because I would be so exhausted I'd be nauseated."  A year later, I was better and did drive it - but I was still physically exhausted and needed a nap when I got there.

It's good for me to remember those days - as I have driven that distance and back a couple times just in the last month.  (was tired - but not like when I was that sick.)

[popmom]

Quote

 

@gardenmom5 How are you doing on the antiviral? 

[gardenmom5]

43 minutes ago, popmom said:

@gardenmom5 How are you doing on the antiviral? 

I'm having side effects - but it seems to be helping.   insomnia is one of the side-effects, and I am tired.  I need to get over my guilt when I go lay down because I'm tired.

my left ear popped the other day - in a way it hasn't for over a year.   (and the **** ENT PA who told me it was nerve damage and to see an audiologist.  GRRRRRR).