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

[Wayne]

Any ideas for moving forward would be appreciated.

Hi @triceratops -- I think the following video is excellent, and may be something for you to consider. He focuses on constipation, but covers GI tract anatomy that is very useful for any type of GI issue. -- Best!

How I Reversed Chronic Constipation Using Coffee Enemas! | SIBO IBS-C Gallstones

 

[Aidan Walsh]

Franconi Syndrome can also come with Crystals forming in the eyes seen by eye specialists who use eye drops & medicines. Kidney transplants later are required & check always potassium levels

 

[Aidan Walsh]

I did see an autopsy report a Guy with mesentera compression in abdomen & his aorta vein undiagnosed, he also had the condition Fabry Disease diagnosed a genetic illness there are child onset or adult onset it runs in families

 

[Violeta]

The phenotype of fatigue exhibited by CFS/ME patients closely mirrors that seen in fatigue associated primary biliary cirrhosis patients (PBC). For example, Hollingsworth et al. [81] reported PBC patients to exhibit significant acidosis due to an overutilisation of the lactate dehydrogenase pathway, following a low-level repeat exercise protocol [81]. Furthermore, the authors postulated that the increased dependence on anaerobic pathways of energy production resulted in the fatigue associated with PDC. The idea that impaired PDC function leads to an overutilisation of the lactate dehydrogenase pathway is in agreement with other studies. For example, Murrough et al. [95] reported significantly higher levels of lactate in ventricular cerebrospinal fluid in CFS/ME patients when compared to healthy controls. Similarly, Constantin-Teodosiu and colleagues [96] in an experimental exercise model using rats demonstrated that when PDC function was decreased via the use of PPAR modulating drugs which upregulated PDK function, lactate accumulated intramuscularly which led to decreased muscle function.

https://www.hindawi.com/journals/jar/2016/2497348/

 

[Aidan Walsh]

Dr. Ron Davis in the OMF's last email said he found BH4 Deficiency in ME/CFS as the likely culprit it has also to do with carbs, Meat protein & one of the treatments is Folinic Acid 10-20mgs daily with other supplements there is no Cure but teatments are used with strict diets. This was from his seminare back in December 2023. He also said from other lab tests as many as 50% of ME/CFS patients have MS with ME/CFS x x

 

[Aidan Walsh]

@Avenger, I finally got a lab to run my blood test for D-lactate acidosis it was out of the range of 120-246 and came back at 240 in the blood test.

I will now see what my Doctor thinks, I was not on antibiotics at this time or for some time. I now know why I get so sick eating carbohydrate foods.

My Folate is Low Deficient in blood I am also 2x genes in MTHFR.

I recently did a gene test Full DNA I have 2 copies of the following illness homozygous for Alport Syndrome, also MT-ND4 Leber Hereditary Optic Neuropathy (LHON) & MT-ND5 which can go with Leigh Syndrome or (LHON) @Wayne

 

[Violeta]

@Avenger, I finally got a lab to run my blood test for D-lactate acidosis it was out of the range of 120-246 and came back at 240 in the blood test.

I will now see what my Doctor thinks, I was not on antibiotics at this time or for some time. I now know why I get so sick eating carbohydrate foods.

My Folate is Low Deficient in blood I am also 2x genes in MTHFR.

I recently did gene DNA I have 2 copies to the following illness homozygous for Alport Syndrome, also MT-ND4 Leber Hereditary Optic Neuropathy (LHON) & MT-ND5 which can go with Leigh Syndrome or (LNON) @Wayne

Aiden, you probably know about thiamine and Leigh Syndrome, but just in case I'll add it anyway.

Thiamine, also known as vitamin B1, is the most common treatment for Leigh syndrome, an inherited neurometabolic disorder that affects the central nervous system.


Leigh syndrome is caused by a mutation that leads to a deficiency in thiamine transporter-2, which is an inherited defect. This deficiency can be treated with thiamine, which helps the body convert food into energy. Symptoms of Leigh syndrome include muscle weakness, fatigue, and loss of appetite

And this is interesting, I didn't expect to find this, but:

"
AI Overview
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"Choline is one of the metabolites involved in Leber Hereditary Optic Neuropathy (LHON), a disease caused by a mutation in mitochondrial DNA:"

I don't know if that means it's helpful or what! I just googled it because I recently found out choline is very good for glaucoma, which my husband has.

This may also be helpful:

Other findings in LHON patients include:

• Decreased concentrations of taurine and nicotinamide
  
  
  
• Reduced concentrations of all proteinogenic amino acids, spermidine, putrescine, isovaleryl-carnitine, and propionyl-carnitine
  
  
  
• Increased concentrations of 10 phosphatidylcholine species
  
  

 

[Aidan Walsh]

Thanks so much, Violetta, appreciated this a lot. I still need confirmation of the genes in the UK with my

Doctors my genes came up in 23andme Health Ancestry & then read out all mutations on genetic genies so it came up twice which is highly likely. Yes, I am looking into these deficiencies as well thanks

I cannot get the Leber eye medicine needed to prevent blindness in England prescription it is only available in Wales, Belfast, Scotland. I will now get in touch with my Doctors on the recent find

 

[Aidan Walsh]

@Viloeta I have 2 Cataracts that need Surgery left side next year yet both not mature yet, no Glaucoma mentioned in recent eye test, left ear hearing issues mild, refused hearing aid x x

 

[Aidan Walsh]

@Avenger, I finally got a lab to run my blood test for D-lactate acidosis it was out of the range of 120-246 and came back at 240 in the blood test.

I will now see what my Doctor thinks, I was not on antibiotics at this time or for some time. I now know why I get so sick eating carbohydrate foods.

My Folate is Low Deficient in blood I am also 2x genes in MTHFR.

I recently did a gene test Full DNA I have 2 copies of the following illness homozygous for Alport Syndrome, also MT-ND4 Leber Hereditary Optic Neuropathy (LHON) & MT-ND5 which can go with Leigh Syndrome or (LHON) @Wayne

23andme Health Ancestry home saliva test Full DNA Raw Data Uploaded to genetic genie dot Org results in minutes were all the mutations only single copies heterozygous/homozygous double copies & all the MTHFR & DETOX results were in PDF & easy to read

 

[Violeta]

@Viloeta I have 2 Cataracts that need Surgery left side next year yet both not mature yet, no Glaucoma mentioned in recent eye test, left ear hearing issues mild, refused hearing aid x x

I didn't mean I thought you would be helped by choline because of glaucoma, I just thought it was interesting that it was also mentioned with respect to LHON. However, if you look down further, in LHON, there is
"Increased concentrations of 10 phosphatidylcholine species". So it wouldn't be helpful.

However, taurine and nicotinamide are supposed to be helpful.

 

[Violeta]

With respect to MTHFR, riboflavin helps correct the problem.

Riboflavin and Methylenetetrahydrofolate Reductase​

https://www.ncbi.nlm.nih.gov/books/NBK6145/


And, Vitamin B2, also known as riboflavin, may help prevent cataracts

 

[Aidan Walsh]

With respect to MTHFR, riboflavin helps correct the problem.

Riboflavin and Methylenetetrahydrofolate Reductase​

https://www.ncbi.nlm.nih.gov/books/NBK6145/


And, Vitamin B2, also known as riboflavin, may help prevent cataracts

No, I know what you meant on the choline. I just found out that above 400 could point to Hodgkins in LDH levels so hope it is not so. I had Cancer in 2021 stomach tumor.

It also mentions Vitamin C is good to lower it for the D-lactate
I drink lots of Vitamin C daily & C fruits always & my level is still high.

Vitamin C is also helpful in Alport Syndrome, multiple vitamins/minerals are not allowed in Alport & Leber's one can become blind just from using B-12 Cobalamin so I cut these out now

I will read all these points you have sent thanks Violeta x x

 

[Aidan Walsh]

I didn't mean I thought you would be helped by choline because of glaucoma, I just thought it was interesting that it was also mentioned with respect to LHON. However, if you look down further, in LHON, there is
"Increased concentrations of 10 phosphatidylcholine species". So it wouldn't be helpful.

However, taurine and nicotinamide are supposed to be helpful.

Has your husband ever been tested for LHON Genetics?

 

[Wayne]

I have 2 Cataracts that need Surgery

Hi @Aidan Walsh -- I don't know if you would have any interest whatsoever, but some people have reported avoiding cataract surgery by using DMSO. Others from using an herbal eyewash by Dr. John Christopher. Just FWIW. -- Best...

 

[Aidan Walsh]

Hi @Aidan Walsh -- I don't know if you would have any interest whatsoever, but some people have reported avoiding cataract surgery by using DMSO. Others from using an herbal eyewash by Dr. John Christopher. Just FWIW. -- Best...

Yes, I am looking at all possibilities to avoid any Surgical procedures, some even mention Canola Oil.

My brother had 2 Cataracts removed over 20 years ago Surgery it gave him back both eyes he has never wore glasses again. This Surgery has risks, Thank you Wayne. Did you ever test for D-Lactate Acidosis levels?

 

[Violeta]

Has your husband ever been tested for LHON Genetics?

No, I should look it up.

 

[Aidan Walsh]

No, I should look it up.

Yes Leber has thiamine deficiencies in some & related to Leigh Syndrome