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ME/CFS for 18 years, recently diagnosed with D-Lactic acidosis as cause of symptoms and illness.

Aidan Walsh

Senior Member
Messages
373
Hi Aidan, it sounds pretty similar to the effects of D-lactic acid, but as I was saying, there are other Neurotoxic Organic Acids from other forms of Bacterial Overgrowth that are capable of giving the same effects as D-lactic acidosis according to the American Journal of Nutrition including Histamine. So I guess that you may have had Acidosis and getting a Blood Gas may be a good first step and could possibly be done privately; if set up to do so, for when you develop systemic symptoms or breathing difficulty.

I also have periods of very low pulse as well as very fast. When my pulse rate went below 50 bpm many years ago during investigations the Consultant would not believe it and blamed it on the finger attachment; but my low pulse rate was setting off the alarm every time that I started to fall asleep and may have been related to Apnoea that I was having with long periods where I stopped breathing. I also go out like a light when I consume carbohydrates when unwell (this is not happening at the moment while in remission, nor reflux or difficulty emptying my stomach). So I have a few similarities to your symptoms.

Vomiting, Abdominal Pain and Sickness during bad episodes are some of the key symptoms; but it affects every organ systemically, from fast tachyarrhythmias to kidney failure that promotes further increase in D-lactic acid (but only during major exacerbations; symptoms can be from mild to extreme). I was diagnosed with both Tachycardia and Bradycardia during investigations for Apnoea which was also diagnosed.

Muscle weakness often causing me slurred speech is also another symptom as well as Fatigue and Memory difficulty; I have also had intermittent low temperatures as well as frequent high BP during episodes;

For 20 years, I was left with hundreds of periods of breathing difficulty without ever being given tests for acidosis; so I guess that probably no one else will have Blood Gasses taken when they develop breathing difficulty, which will most likely be put down to Anxiety and Overbreathing!!!! Because Doctors have misunderstood what is happening, so will react with some form of Somatic explanation...next please!

Overbreathing happens because your body is trying to excrete and eliminate high C02 Acidosis by breathing faster, panting, increasing Blood Pressure and Heartrate, while the Heart muscle itself and (mitochondria dysfunction) must be affected by the Neurotoxin causing things like Ectopic heartbeats and tachyarrhythmia.

Sickness is one of the key signs during exacerbations along with encephalopathy that can be from dizziness to real cognitive difficulty and more severe encephalopathy.

We need a Chemist to be able to measure the most simple form of excreted D-lactate in Urine; If this was done with something like a test strip, then we could learn more by plotting a graph of the rise and fall with corresponding symptoms.

It would be interesting to see what levels come up on the Quantiquick Test Strip; whether it will be sensitive enough? but I am not sure if anyone has tried this yet?

I have had a very bad year being ill for much of it due to increasing antibiotic resistance and have just got my symptoms in remission; I do not want to allow myself to become ill again to try the strips. But I expect that D-la will be back again as it is virtually impossible to stop permanently. So I should really purchase some test strips to try out at some point in the future for reference.

I wonder if it would be worth talking to the manufacturers and see if they could produce test strips for urine at the required sensitivity? Or sensitive to a range of Organic acids?
I also have 3 Tumors in my brain one is an adenoma of the pituitary gland but ok the other 2 are in my Pineal Gland one sits on top of the other it cannot be measured but the top one is a 2.5 which is 5x normal is size, I will go to see a neurosurgeon at Addenbrooke Hospital Dr. Thomas Santarius to remove them.

I hope to see him first visit privately I will try for August. Have you looked at your MRI's with contrast to see if you have any at all they do not report these the total Asses?

You can get all of them online at NHS to send them free on NHS discs it takes a few weeks or more. I am not sure if they would do anything with urine strips for test D-Lact. If you ever change your mind & can copy your discs you can email me them I know how to look for them & enlarged them as well. The NHS Discs comes with a program you can measure the Tumors yourself even enlarge them. I am in Southampton.

There are a few Groups on Facebook you will see the MRI's in the Media link on there there is also a UK Group as well. Check search on FB Pineal Gland Cyst Tumors
 
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Aidan Walsh

Senior Member
Messages
373
Hi @Avenger -- Just a reminder, Methylene Blue has been shown in the laboratory to be effective against antibiotic resistance bacteria. I started taking MB in March, and have discovered since that it's one of the best things I've ever done for myself healthwise.

I believe it knocked out my Long Covid after more than a year, likely cleared up a low-grade infection in my sinuses, and also likely knocked out a low-grade Candida problem. All that besides giving me extra energy on a daily basis. I believe it's also been good for my brain and neurological system.

Take care!
Wayne how did you purchase the MB & can I order it with any prescriptions or online? I am in the UK thanks Wayne
 

Wayne

Senior Member
Messages
4,310
Location
Ashland, Oregon
Methelene Blue it sounds excellent! Where can I get some for human use? Or can you use the fish version What is the best dosage and source or make?

Wayne how did you purchase the MB & can I order it with any prescriptions or online? I am in the UK

Hi @Avenger, @Aidan Walsh,

I initially purchased a 3.5 oz. 1% solution bottle at Amazon, but you can also buy it for much less if you get the powder (same company) and dilute it with purified water. The ratio is 1 gram of the powder to 100 ml. (about 3.5 oz.) of water. The exact ratio is not really important, and some people like to make it both stronger and weaker than the above ratio. The 1 gram to 100 ml. ratio is the most commonly used however.

This product is pharmaceutical grade (USP), which is what they recommend for taking it internally. There are other less pure grades out there for fish tanks and laboratory use, though I don't really know how much less pure. THIS POST takes you to a list of "recommended dosages", but I take far less, about 10 drops per day. I think most people with ME/CFS should start slowly, like 1-3 drops per day in the beginning.
 

Aidan Walsh

Senior Member
Messages
373
Hi @Avenger, @Aidan Walsh,

I initially purchased a 3.5 oz. 1% solution bottle at Amazon, but you can also buy it for much less if you get the powder (same company) and dilute it with purified water. The ratio is 1 gram of the powder to 100 ml. (about 3.5 oz.) of water. The exact ratio is not really important, and some people like to make it both stronger and weaker than the above ratio. The 1 gram to 100 ml. ratio is the most commonly used however.

This product is pharmaceutical grade (USP), which is what they recommend for taking it internally. There are other less pure grades out there for fish tanks and laboratory use, though I don't really know how much less pure. THIS POST takes you to a list of "recommended dosages", but I take far less, about 10 drops per day. I think most people with ME/CFS should start slowly, like 1-3 drops per day in the beginning.
thank you Wayne appreciated lots, hope you are doing well
 

Aidan Walsh

Senior Member
Messages
373
Hi Avenger, I hope you are doing better now I was looking up things online from when you mentioned you were being helped with baking soda treatments.

I saw something but too early to tell if it could also be involved I think they also use baking soda IV as a treatment it is called Franconi Syndrome. Have you ruled this out entirely? I also was tested for every type of porphyria after having reactions to the Sun with eyes & skin bleeding spots.

My urine home was put into the Sun on my window ledge I was hydrated before but it did turn color consistent with porphyria but all my tests now show as Negative to porphyrias so I now have ruled this out.

I have an enlarged left kidney lopsided they call a Drone Dary Hump, I wonder if this could be the same as the guy who had a Surgery Cure on Health Rising I think an enlarged Medula taken out or reduced. It was done in the past decades ago in animals never in humans he was the first he got FDA approval to have Doctors proceed.

I do not believe he is cured although I may be wrong. He could still be on medicines as well daily. He actually gave a Ted Talk speech online in the past about his illness. Hope you are doing well, thanks, Aidan
 
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Messages
27
Hi @Avenger , someone shared your original post with me. I'm so glad I came across it. I have managed to read a few pages of the thread and its all adding up. I've recently gotten a lactic acid lab by my genetics dr to identify why I'm having PEM. It came back at 325mmol! Range is 1-40mmol.
I also have a mutation in MYLK gene which codes for Myosin Light Chain Kinase(critical activator of smooth muscle cell contraction) which is known to cause multisystemic smooth muscle dysfunction. This would explain my POTS(Impaired vasoconstriction of vessels from dysfunctional smooth muscle), Dysautonomia(mimic dysautonomia except it is and end organ(smooth muscle cell dysfunction)), SIBO(impaired gastric walls contraction), and PEM(Impaired hemodynamics). I guess now I may have D lactic acidosis as a result as well. What do you think, is this a likely root cause? Any ideas would be appreciated, I have been stuck in my bed since February of this year extremely ill and tired of doctor not landing on something.
 

Aidan Walsh

Senior Member
Messages
373
Hi @Avenger , someone shared your original post with me. I'm so glad I came across it. I have managed to read a few pages of the thread and its all adding up. I've recently gotten a lactic acid lab by my genetics dr to identify why I'm having PEM. It came back at 325mmol! Range is 1-40mmol.
I also have a mutation in MYLK gene which codes for Myosin Light Chain Kinase(critical activator of smooth muscle cell contraction) which is known to cause multisystemic smooth muscle dysfunction. This would explain my POTS(Impaired vasoconstriction of vessels from dysfunctional smooth muscle), Dysautonomia(mimic dysautonomia except it is and end organ(smooth muscle cell dysfunction)), SIBO(impaired gastric walls contraction), and PEM(Impaired hemodynamics). I guess now I may have D lactic acidosis as a result as well. What do you think, is this a likely root cause? Any ideas would be appreciated, I have been stuck in my bed since February of this year extremely ill and tired of doctor not landing on something.
Where did you get the first test done the Lactic Acid lab done? Is this the normal lactic acid test or the D-lactate acid one you mentioned above? How much was your D-Lactate Acidosis test? thanks, Aidan, I am in the UK now
 
Messages
27
Where did you get the first test done the Lactic Acid lab done? Is this the normal lactic acid test or the D-lactate acid one you mentioned above? How much was your D-Lactate Acidosis test? thanks, Aidan, I am in the UK now
It was a regular lactic acid test. So it could either be L-lactic acid or D-lactic acid. Waiting to speak with Dr
 

Aidan Walsh

Senior Member
Messages
373
It was a regular lactic acid test. So it could either be L-lactic acid or D-lactic acid. Waiting to speak with Dr
Any News thus far on the C-Lactic Acid test? I did see the L-Lactic Acid test done for about £140 or £148 at the Hospital private clinic through Spire
 
Messages
27
Any News thus far on the C-Lactic Acid test? I did see the L-Lactic Acid test done for about £140 or £148 at the Hospital private clinic through Spire
They did a repeat on serum and urine and my lactic acid is normal so back to square one. I’m going to see Gastro next week and see what develops. I’m in the US but I’m sure theres also some private labs that do it here. Too many avenues to follow so I’m not sure if I have enough money to rule out L-lactic acidosis but hope the Gastro I’m seeing can help
 

Aidan Walsh

Senior Member
Messages
373
I wa
They did a repeat on serum and urine and my lactic acid is normal so back to square one. I’m going to see Gastro next week and see what develops. I’m in the US but I’m sure theres also some private labs that do it here. Too many avenues to follow so I’m not sure if I have enough money to rule out L-lactic acidosis but hope the Gastro I’m seeing can help
I was in the Emergency Room on May 31st they ran heart tests one was a blood Gas I believe this carried L-lactate acid it was Normal but never had the D-lactate acid one.

The emergency room Doctor thinks I have PND Paroxysmal Nocturnal Dyspnea, basically, it means heart failure the heart cannot clear mucus sleeping or lying down like healhy people all do, when sleeping I begin to suffocate it is not sleep apnea I had sleep testing in hospital before overnight monitors.

My GP thinks I have AFIB Afibrillation. A January CT Contrast of my Heart stomach & chest showed my ascending heart Aorta had a dilatation another name for an aneurysm they have done nothing yet, I have no clue yet the size either
 
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Messages
27
I wa

I was in the Emergency Room on May 31st they ran heart tests one was a blood Gas I believe this carried L-lactate acid it was Normal but never had the D-lactate acid one.

The emergency room Doctor thinks I have PND Paroxysmal Nocturnal Dyspnea, basically, it means heart failure the heart cannot clear mucus sleeping or lying down like healhy people all do, when sleeping I begin to suffocate it is not sleep apnea I had sleep testing in hospital before overnight monitors.

My GP thinks I have AFIB Afibrillation
Sorry to hear this. I hope there is something they can do. When you say the heart cannot clear the mucus what do you mean exactly? Something to do with the lungs? PND causes fluid buildup in lungs? Did they say what causes your right ventricle to weaken?

Always thought about recording myself in my sleep to catch any of this stuff
 

Aidan Walsh

Senior Member
Messages
373
Sorry to hear this. I hope there is something they can do. When you say the heart cannot clear the mucus what do you mean exactly? Something to do with the lungs? PND causes fluid buildup in lungs? Did they say what causes your right ventricle to weaken?

Always thought about recording myself in my sleep to catch any of this stuff
They never really said, he did say healthy people get mucus sleeping & others with PND cannot clear it sleeping and aorta he was not sure why. I think maybe it is ME/CFS & some have connective tissue issues countless have ME/CFS EDS combined some have MS with ME/CFS. The Emerg Doctor asked me how many pillows do I sleep with I said 2 he then mentioned PND some must sleep in chairs elevated or even more pillows

Ron Davis said in London on video recently 20 to 25% have ME/CFS with MS. I have Asthma in the family my Dad had it bad then my youngest brother recently, I am helped with steroid nasal spray, in past I am helped with cortef or prednisone, maybe it's my adrenals or a pineal tumor 5x normal or blocked jugular ascending vein?

Dr Thomas 'Tom' Santarius & all UK Neurosurgeons are placed on hold because some have jugular compression with or without Pineal Gland Tumors see Pineal Cysts UK Facebook. There is one Woman a Doctor her left Kidney was enlarged she was dismissed by many saying it was not her kidney she had an issue found it was just above her kidney they operated on her she returned to a full life & resumed her profession.. They used aspirin it helped but did not last

I will now try to find the link & post it later on here if I can save it or download it as soon as I can. I think I shared it on messenger with a friend, I have an enlarged left kidney they called a Drum Dary Hump I think it is spelled it is a single Camel Hump. I just searched it was called,

'I can assure you there is nothing wrong with your kidney' The author is Tamara Keith Patient/GP see if anyone on here can Download it below for everyone to see thanks xx
 
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kangaSue

Senior Member
Messages
1,861
Location
Brisbane, Australia
'I can assure you there is nothing wrong with your kidney' The author is Tamara Keith Patient/GP see if anyone on here can Download it below for everyone to see thanks
Here is the article in question. It's about a woman who had renal Nutcracker Syndrome (NCS - left renal vein compression), something I'm afflicted with and which is fairly prevalent in those who also have EDS, and the condition is sometimes wrongly diagnosed as ME/CFS due to the significant fatigue that it causes in some patients.
More often than not in NCS, the kidney size is unaffected, nor is its actual function compromised.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7850223/
 

kangaSue

Senior Member
Messages
1,861
Location
Brisbane, Australia
Sorry to hear this. I hope there is something they can do. When you say the heart cannot clear the mucus what do you mean exactly? Something to do with the lungs? PND causes fluid buildup in lungs?
PND is due to the heart not properly clearing the interstitial fluid within it when laying down. Just sitting up is usually enough to clear it if the cardiac issue isn't a too significant one.
 

Aidan Walsh

Senior Member
Messages
373
PND is due to the heart not properly clearing the interstitial fluid within it when laying down. Just sitting up is usually enough to clear it if the cardiac issue isn't a too significant one.
yes, that is right but my heart is now showing an ascending aorta issue & the Emergency Doctor said PND it is not only a lung issue it is a type of heart failure & he suggested to come back if it worsens, I am waiting now for other results. The article above on the kidney on the Doctor she also had one of TB issues treated. She got better but developed stenosis several months later.

One can also have an enlarged kidney I have one so did she. One girl recently was Cured on a new procedure it was at Toronto Hospital for Sick Children they used a vein attached bypassing for blood flow she was born with only one kidney. Maybe it was the same procedure she woke up well
 

Aidan Walsh

Senior Member
Messages
373
Sorry to hear this. I hope there is something they can do. When you say the heart cannot clear the mucus what do you mean exactly? Something to do with the lungs? PND causes fluid buildup in lungs? Did they say what causes your right ventricle to weaken?

Always thought about recording myself in my sleep to catch any of this stuff
Could be a weakness from possible EDS ME/CFS maybe it is a blocked vein, many have issues with the aortas
 
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Messages
2
Hi all. New to this forum, just created an account.

Been searching for an explanation of my wacky neuro symptoms for 2 years. This was my FIRST symptom - the severe neuro issues after carbs. Over time I got worse and worse. Of course out of 20+ doctors I have no answers. Only within past week did I discover “D-lactic acidosis”.

Unclear to me how much of a role the acidosis plays in my illness overall - if it just causes the “episodes” or if it is also a primary cause of my daily debilitating symptoms. I find it very easy to prevent the “episodes” (don’t go overboard on carbs, dont eat dairy) but my illness overall has continued to worsen. Have been very severe, currently severe.

Unable to read entire thread, if anyone has summary of treatment options in the US I’d be very grateful. Hard to research probiotic strains available for purchase here that will help. Seems like there’s been a few studies with success but I’m at a loss as to how to get my hands on the strains to try them.

I have done keto in the past and I got worse overall and had one of my worst crashes ever so I’m afraid to try again. Also makes me wonder if I have regular CFS with a side of episodic d-lactic acidosis, which would mean my daily symptoms won’t be touched by diet.

Currently trying low FODMAP + specific carb diet (SCD) without going into ketosis to see if that helps, but no luck yet…

Any ideas for moving forward would be appreciated. Thanks all sending love.
 

Aidan Walsh

Senior Member
Messages
373
Hi all. New to this forum, just created an account.

Been searching for an explanation of my wacky neuro symptoms for 2 years. This was my FIRST symptom - the severe neuro issues after carbs. Over time I got worse and worse. Of course out of 20+ doctors I have no answers. Only within past week did I discover “D-lactic acidosis”.

Unclear to me how much of a role the acidosis plays in my illness overall - if it just causes the “episodes” or if it is also a primary cause of my daily debilitating symptoms. I find it very easy to prevent the “episodes” (don’t go overboard on carbs, dont eat dairy) but my illness overall has continued to worsen. Have been very severe, currently severe.

Unable to read entire thread, if anyone has summary of treatment options in the US I’d be very grateful. Hard to research probiotic strains available for purchase here that will help. Seems like there’s been a few studies with success but I’m at a loss as to how to get my hands on the strains to try them.

I have done keto in the past and I got worse overall and had one of my worst crashes ever so I’m afraid to try again. Also makes me wonder if I have regular CFS with a side of episodic d-lactic acidosis, which would mean my daily symptoms won’t be touched by diet.

Currently trying low FODMAP + specific carb diet (SCD) without going into ketosis to see if that helps, but no luck yet…

Any ideas for moving forward would be appreciated. Thanks all sending love.
Could be a lot of things from folate methyl issues the FDA added synthetic folic acid in all flours in 1989. Some have Nutcracker Syndrome. One on here was positive for D-Lactate. The Methyl group is on Facebook.
Did you test yet for D-Lactate anywhere there?
The author here Avenger is in remission he used antibiotics, a diet & baking soda. I have an enlarged left kidney its lopsided it may also indicate Nutcracker Syndrome found on a US Abdomen but still need the color Doppler with urine dipsticks for blood, Urine ACR Albumin Creatinine Ratio test & Venography of my left kidney vein right side
 
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