Chronically Elevated Lactate Is this "normal" for CFS?

[Silence]

Diagnosed conditions: CFS/ME 2014, MCAS, Ehlers-danlos syndrome, Low cd4 , low igg subclass 3, iodine deficiency - multinodular goiter, chronc diarrhea, Myopathy, Heart murmur

Hello all. I've been feeling very poorly as of a few months ago. My heart rate seems very elevated and jumpy, My chronic diarrhea is getting worse and now my weakness is always there. I've been in and out of the ER with Sinus tachycardia-Heart rate in the 100-130s. Along with bouts of sinus tachycardia, my lactate is rising. Over the past years its been a little elvated like 2,0-2.5, Normal (0.4-2.0mmol/L) and I was able to walk here and there around the house without crashing too badly. I could get up to brush my teeth, and walk from room from room without feeling to bad but now it feels completely different. I am so out of breath when I try to do the same thing I did before and my limbs are shaking from weakness/no energy. I am basically bed bound for most of the day, except when I need to use the toilet. My Lactic acid is now 2.5-3.3 Normal (0.4-2.0mmol/L). I am wondering if this has anything to do with my aching/burning muscles/ weakness/ CFS.

When I get those "sinus tachy attacks" where my heart feels like its pounding out of my chest, My wbc are also abnormal- elevated wbc, elevated neutrophils and decreased lymphocytes. They run sepsis panels but its always negative.

According to an EMG and Whole exome sequencing I had in the past my neurologist says I have some sort of Myopathy/muscular dystrophy. I wonder if this has something to do with it, but the disease they think I may have doesn't show up with metabolic problems like elevated lactate. One geneticist thought I could have a mitochondrial disease. This could explain it, but I would need a muscle biopsy and I am in no shape to get one atm.

I had a b1 deficiency in the past but now I supplement with b1 and its been in range or over the range since supplementing vigirously a year or 2 ago. B1 doesn't seem to help the lactate or the fatigue.

When I get my lactate done its without a turniquit and put on ice. Plus its in the morning fasting so I haven't done any activity.

They gave me IV saline soln in the ER and they brought it down some 3.0 to 2.5. Does anyone know any other ways of bringing it down?

Do any of you experience, I think the term is called "hyperlactitemia"- elevated lactate too.

 

[Pearshaped]

My lactate is 2.1. You must feel terrible with 3.00

Idk if this is normal but elevated lactate in ME is not that uncommon it seems.
Hope others will hop in.

Ways to reduce elevated lactate:
(according to Dr.Bodo Kuklinski)
1.Magnesium AND Potassium
2.Ketogenic Diet
3.Benfotiamine (B1)
NOTE: he stresses that Mag &Pot HAVE to be sufficient in order to make other things work.

Ketogenic Diet should help longterm bec carbs can lead to elevated lactate if the enzyme Pyruvatdehydrogenase is impaired.A metabolic pathway that is suspected to be blocked in Me/Cfs.
Did they test bacteria?

 

[Zebra]

Hi @Silence!

I was just on the Stanford Undiagnosed Diseases website, and I came across a rare diagnosis that made me think of your post.

I will cut and paste the pertinent text here and provide a general link below.

CUT & PASTE:

One that sticks out to study co-author Matthew Wheeler, MD, assistant professor of medicine at Stanford and executive director of the Stanford Center for Undiagnosed Diseases, is the case of a patient who the network followed for multiple years. The patient had mysterious and life-threatening episodes of something called lactic acidosis, a dangerous buildup of lactic acid in the body.

“It’s sort of like an extreme version of when you exercise intensely, and you feel that burn from the lactate buildup — only it’s your whole body that feels that way,” Wheeler said. “Lactic acidosis can also cause your acid-base balance to be out of whack, and when people have severe acid-base disturbances, they’re at high risk for arrhythmia or death.”

It wasn’t clear why the patient was experiencing these symptoms, which seemed to be prompted by a cold or flu. After giving the patient the full gamut of tests and analyzing sequencing information, a team of Stanford scientists found the culprit: a single mutation in the gene ATP5F1D, which is involved in the function of mitochondria, the cell’s powerhouse. The genetic oddity and symptoms had never been classified together officially, but from connections within the network and in some instances word of mouth, the scientists found that other doctors around the world had patients plagued by this syndrome. In verifying that the mutation causes the syndrome — called mitochondrial complex V deficiency, nuclear type 5 — network collaborators on the study developed animal models to show causality.

LINK TO WEBSITE: https://med.stanford.edu/news/all-n...s-with-undiagnosed-diseases-find-answers.html

 

[ebethc]

My lactate is 2.1. You must feel terrible with 3.00
...

Ketogenic Diet should help longterm bec carbs can lead to elevated lactate if the enzyme Pyruvatdehydrogenase is impaired.A metabolic pathway that is suspected to be blocked in Me/Cfs.
Did they test bacteria?

1. is lactate tested as part of a chem panel (w creatine, potassium, etc.), or is it a special test?
2. what are the tests for the impaired Pyruvatdehydrogenase pathway?

I have bad insurance and need to spoon feed my doc every little test and possible explanation... thanks.