I cite this study translational-medicine.biomedcentral.com/articles/10.1186/s12967-018-1392-z because all my many health problems began with an enterovirus. And this trial gave participants Dx w/MECFS antibiotic and probiotic treatments and diet to address enterococci and streptococci gut dysbiosis. I would like to try this protocol of 400mg erythromycin 2x/day alternating with the probiotic — one week on antibiotic alternating with one week on probiotic for 3-months and the carbohydrate (simple and complex) restricted diet plus IV and oral hydration. In this study, participants used 2 capsules daily of Pro4-50 D-lactate free multistrain probiotic (Spectrumceuticals Pty Ltd, Belrose, New South Wales, Australia). Each probiotic capsule contained Lactobacillus rhamnosus (2.5 × 1010 cfu), Bifidobacterium lactis (1.5 × 1010 cfu), Bifidobacterium breve (5 × 106 cfu), Bifidobacterium longum (5 × 106 cfu). Note that the study only trialed patients for 4 weeks. But an article in
Science Daily www.sciencedaily.com/releases/2018/08/180806095213.htm says 3-months are necessary. And an article on the Oley Foundation website outlines a similar therapy for acute and a long-term control of lactic acidosis oley.org/page/DLacticAcidosis. I have lactic acidosis. It is caused by dysbiosis. And it is comorbid with MECFS.
History: On July 2 2014, I was rushed to the ER and admitted overnight to the hospital following a trip to the Jersey Shore. The beach where I swam, Spring Lake, was closed owing to contamination with Enterococci www.nj.gov/dep/wreckpond/index.htm. I have always believed the enterovirus and subsequent microbial imbalance was causative of my MECFS. And all else: CIRS, IBS, SIBO, MCAS, HI, MCS, FMS, low T3, cataracts, weight gain, anxiety, brain fog, headache, etc. Now it seems I may have thyroid cancer. Well, there is link between dysbiosis and thyroid cancer, too, according to a study in PubMed www.ncbi.nlm.nih.gov/pubmed/30584647.
Add to this, I had a gastric bypass in 2003 and a revision in 2008. I developed severe motility issues owing to use of iron supplements and antidepressants. This facilitates bacteria staying in the small intestine where they can cause harm. Additionally, I have dyssynergic defecation (I believe caused by constipation) as shown by MRI-defacography. This can lead to leaky gut and fermentation of fecal matter. Also the blind loop / small bowel bypass is similar in effect to a small bowel resection that has been observed in D-Lactic acidosis (enterococci are d-lactic acid producing bacteria). In the ER I was found to have blood acidosis and subsequently in 2018 during my 2-day clinical trial at Weil Cornell, I was found to have high plasma lactic acid levels post exertion. That clinical trial also determined through 2-day CPET that my body uses glucose for energy, which results in d-lactic acid and l-lactic acid.
From the study linked above: “The D-lactate theory has been proposed as a possible mechanism for the neurological disturbances associated with gut dysbiosis in this population. D-Lactic acidosis is an acute metabolic acidosis with associated encephalopathy that is observed in patients with a history of small bowel resections. The shortened small bowel can lead to impaired absorption of carbohydrates, preferential growth of selected gut bacteria (e.g., increase in some species of Lactobacillus and Streptococcus) that promotes an acidic colonic environment and excess production of D-lactic acid. This abundance of D-lactic acid combined with decreased metabolic capacity can lead to excess absorption within the blood and brain believed to play a role in the neurological symptoms of D-lactic acidosis. Within ME/CFS, an overgrowth of Streptococcus and Enterococcus species (D-lactic acid producing bacteria) has been observed in culture-based microbial studies. This bacterial imbalance, combined with overlapping neurological symptoms and possible mechanisms have contributed to the proposal that subclinical concentrations of D-lactate may play a role in ME/CFS presentations.” Lactic acid in MECFS is being studied by the lead researcher, Dr. Shungu, of the trial in which I participated.
Selection of the correct probiotic is essential. According to Science Daily: “Short bowel syndrome results in a lot of undigested carbohydrates that are known to cause small intestinal bacterial overgrowth, or SIBO, and the high levels of D-lactic acid….
What we now know is that probiotic bacteria have the unique capacity to break down sugar and produce D-lactic acid. So if you inadvertently colonize your small bowel with probiotic bacteria, then you have set the stage for potentially developing lactic acidosis and brain fogginess.”
In the early stages of my illness, I would belch extensively and my stomach would bloat after eating. I went to the head of digestive disorders at IU Health and he said I was swallowing air. I knew that had SIBO but he did not believe me. He tried to treat me with a PPI, which I refused as it would have made the condition worse.
The article in Science Daily says to perform endoscopy that enables examination of fluid from the small intestines so the specific bacteria can be determined and the best antibiotics selected for treatment. However, I know the bacterial composition of my microbiota from a Genova GI Effects stool test. My commensal bacteria are borderline imbalanced: I have no Verrucomicrobia Phylum (Akkermansia muciniphila). I have low Fusobacteria Phylum and Firmicutes Phylum (Ruminococcus spp). I have high Bacteroidetes Phylum (Bacteroides vulgatus and Odoribacter spp). Calprotectin and Phospholipids fecal fats also are high. I have potentially pathogenic Candida glabrata (T. glabrata) and the test showed Nystatin or Fluconazole at a higher than normal dosage likely would be effective antifungals.
As for antibiotics, I’ve tried several antibiotic regimens throughout the years but have not tried Erythromycin. So it stands to reason it is one that will work, although there are other Abx therapies note on Oley (below).
I have in the past taken probiotics indiscriminately and eaten fermented foods containing probiotics on the advice of a clinical nutritionist. I have a history of very heavy antibiotic use from my teens through my 40s owing to chronic sinusitis and bronchitis, which alter the intestinal flora to favor D-lactate production, according to the Oley Foundation. I've done many courses of herbal antibiotics as well as rifaximin and neomycin. The only antibiotic protocols I have not tried are Erythromycin, clindamycin, tetracycline, metronidazole, vancomycin, and kanamycin. Note that Dr. Alison Siebecker, the Queen of SIBO, protocol calls for low dose Erythromycin lifelong after SIBO is eradicated so as to keep it eradicated.
What gives me hope it that treatment of acute episodes of D-lactic acidosis with carbohydrate restriction (both simple and complex), rehydration, and administration of antibiotics typically results in resolution of neurologic symptoms within hours to a few days, according to the Oley Foundation oley.org/page/DLacticAcidosis. I do not know if my condition is acute or chronic, none-the-less the treatment seems the same only the duration is longer per the sources above. “Acute episodes” could explain why I sometimes am totally out of it mentally and forget items cooking on the stove and other times I can ace a neuro-psych exam and complain it was too easy. Oley discusses how D-lactate encephalopathy is a rare neurological syndrome that can occur in individuals with short bowel syndrome (SBS) or following jejuno-ileal bypass surgery. The latter is a popular weight loss surgery that is no longer performed because it was later found to cause a slew of health problems — problems that are very similar to what I am experiencing now post gastric bypass weight loss surgery — trouble seeing at night, fatigue, anemia, kidney problems owing to malnutrition. An article in JAMA is titled Jejunoileal Bypass: A Legacy of Late Complications. Maybe we will find the gastric bypass has a slew of late complications, too, given it is a malabsorption procedure.
Oley goes on to say that a person may develop the neurological symptoms—which can be quite striking—several months to years after the initial diagnosis of a malabsorption disorder. Note that I have both a malabsorption disorder and a fat metabolism disorder (shown by the 2-day CPET). They say misdiagnosis of D-lactic acidosis is common, as the neurologic symptoms are sometimes attributed to other causes. But with proper diagnosis, D-lactic acidosis can be treated promptly and the symptoms will usually resolve within several hours to a few days.
Here is a treatment regimen detailed by a registered dietician on the Oley Foundation website oley.org/page/DLacticAcidosis. It includes IV hydration, antibiotics, diet, probiotics both for acute treatment and long-term treatment. It is old, and I think Erythromycin is a better choice of antibiotic since that is what the newer research is using, although I would not completely rule out the use of older Abx. Otherwise the protocol looks excellent.
Thus owing to the weight of evidence, I hope that the newer 3-month regimen discussed in Science Daily or the older treatment outlined on Oley will prove beneficial for me, maybe even life-changing. It is worth trying because folks that had the jejuno-ileal bypass surgery have died. And I do not want to die. Now to find a doc to Rx this.
Science Daily www.sciencedaily.com/releases/2018/08/180806095213.htm says 3-months are necessary. And an article on the Oley Foundation website outlines a similar therapy for acute and a long-term control of lactic acidosis oley.org/page/DLacticAcidosis. I have lactic acidosis. It is caused by dysbiosis. And it is comorbid with MECFS.
History: On July 2 2014, I was rushed to the ER and admitted overnight to the hospital following a trip to the Jersey Shore. The beach where I swam, Spring Lake, was closed owing to contamination with Enterococci www.nj.gov/dep/wreckpond/index.htm. I have always believed the enterovirus and subsequent microbial imbalance was causative of my MECFS. And all else: CIRS, IBS, SIBO, MCAS, HI, MCS, FMS, low T3, cataracts, weight gain, anxiety, brain fog, headache, etc. Now it seems I may have thyroid cancer. Well, there is link between dysbiosis and thyroid cancer, too, according to a study in PubMed www.ncbi.nlm.nih.gov/pubmed/30584647.
Add to this, I had a gastric bypass in 2003 and a revision in 2008. I developed severe motility issues owing to use of iron supplements and antidepressants. This facilitates bacteria staying in the small intestine where they can cause harm. Additionally, I have dyssynergic defecation (I believe caused by constipation) as shown by MRI-defacography. This can lead to leaky gut and fermentation of fecal matter. Also the blind loop / small bowel bypass is similar in effect to a small bowel resection that has been observed in D-Lactic acidosis (enterococci are d-lactic acid producing bacteria). In the ER I was found to have blood acidosis and subsequently in 2018 during my 2-day clinical trial at Weil Cornell, I was found to have high plasma lactic acid levels post exertion. That clinical trial also determined through 2-day CPET that my body uses glucose for energy, which results in d-lactic acid and l-lactic acid.
From the study linked above: “The D-lactate theory has been proposed as a possible mechanism for the neurological disturbances associated with gut dysbiosis in this population. D-Lactic acidosis is an acute metabolic acidosis with associated encephalopathy that is observed in patients with a history of small bowel resections. The shortened small bowel can lead to impaired absorption of carbohydrates, preferential growth of selected gut bacteria (e.g., increase in some species of Lactobacillus and Streptococcus) that promotes an acidic colonic environment and excess production of D-lactic acid. This abundance of D-lactic acid combined with decreased metabolic capacity can lead to excess absorption within the blood and brain believed to play a role in the neurological symptoms of D-lactic acidosis. Within ME/CFS, an overgrowth of Streptococcus and Enterococcus species (D-lactic acid producing bacteria) has been observed in culture-based microbial studies. This bacterial imbalance, combined with overlapping neurological symptoms and possible mechanisms have contributed to the proposal that subclinical concentrations of D-lactate may play a role in ME/CFS presentations.” Lactic acid in MECFS is being studied by the lead researcher, Dr. Shungu, of the trial in which I participated.
Selection of the correct probiotic is essential. According to Science Daily: “Short bowel syndrome results in a lot of undigested carbohydrates that are known to cause small intestinal bacterial overgrowth, or SIBO, and the high levels of D-lactic acid….
What we now know is that probiotic bacteria have the unique capacity to break down sugar and produce D-lactic acid. So if you inadvertently colonize your small bowel with probiotic bacteria, then you have set the stage for potentially developing lactic acidosis and brain fogginess.”
In the early stages of my illness, I would belch extensively and my stomach would bloat after eating. I went to the head of digestive disorders at IU Health and he said I was swallowing air. I knew that had SIBO but he did not believe me. He tried to treat me with a PPI, which I refused as it would have made the condition worse.
The article in Science Daily says to perform endoscopy that enables examination of fluid from the small intestines so the specific bacteria can be determined and the best antibiotics selected for treatment. However, I know the bacterial composition of my microbiota from a Genova GI Effects stool test. My commensal bacteria are borderline imbalanced: I have no Verrucomicrobia Phylum (Akkermansia muciniphila). I have low Fusobacteria Phylum and Firmicutes Phylum (Ruminococcus spp). I have high Bacteroidetes Phylum (Bacteroides vulgatus and Odoribacter spp). Calprotectin and Phospholipids fecal fats also are high. I have potentially pathogenic Candida glabrata (T. glabrata) and the test showed Nystatin or Fluconazole at a higher than normal dosage likely would be effective antifungals.
As for antibiotics, I’ve tried several antibiotic regimens throughout the years but have not tried Erythromycin. So it stands to reason it is one that will work, although there are other Abx therapies note on Oley (below).
I have in the past taken probiotics indiscriminately and eaten fermented foods containing probiotics on the advice of a clinical nutritionist. I have a history of very heavy antibiotic use from my teens through my 40s owing to chronic sinusitis and bronchitis, which alter the intestinal flora to favor D-lactate production, according to the Oley Foundation. I've done many courses of herbal antibiotics as well as rifaximin and neomycin. The only antibiotic protocols I have not tried are Erythromycin, clindamycin, tetracycline, metronidazole, vancomycin, and kanamycin. Note that Dr. Alison Siebecker, the Queen of SIBO, protocol calls for low dose Erythromycin lifelong after SIBO is eradicated so as to keep it eradicated.
What gives me hope it that treatment of acute episodes of D-lactic acidosis with carbohydrate restriction (both simple and complex), rehydration, and administration of antibiotics typically results in resolution of neurologic symptoms within hours to a few days, according to the Oley Foundation oley.org/page/DLacticAcidosis. I do not know if my condition is acute or chronic, none-the-less the treatment seems the same only the duration is longer per the sources above. “Acute episodes” could explain why I sometimes am totally out of it mentally and forget items cooking on the stove and other times I can ace a neuro-psych exam and complain it was too easy. Oley discusses how D-lactate encephalopathy is a rare neurological syndrome that can occur in individuals with short bowel syndrome (SBS) or following jejuno-ileal bypass surgery. The latter is a popular weight loss surgery that is no longer performed because it was later found to cause a slew of health problems — problems that are very similar to what I am experiencing now post gastric bypass weight loss surgery — trouble seeing at night, fatigue, anemia, kidney problems owing to malnutrition. An article in JAMA is titled Jejunoileal Bypass: A Legacy of Late Complications. Maybe we will find the gastric bypass has a slew of late complications, too, given it is a malabsorption procedure.
Oley goes on to say that a person may develop the neurological symptoms—which can be quite striking—several months to years after the initial diagnosis of a malabsorption disorder. Note that I have both a malabsorption disorder and a fat metabolism disorder (shown by the 2-day CPET). They say misdiagnosis of D-lactic acidosis is common, as the neurologic symptoms are sometimes attributed to other causes. But with proper diagnosis, D-lactic acidosis can be treated promptly and the symptoms will usually resolve within several hours to a few days.
Here is a treatment regimen detailed by a registered dietician on the Oley Foundation website oley.org/page/DLacticAcidosis. It includes IV hydration, antibiotics, diet, probiotics both for acute treatment and long-term treatment. It is old, and I think Erythromycin is a better choice of antibiotic since that is what the newer research is using, although I would not completely rule out the use of older Abx. Otherwise the protocol looks excellent.
Thus owing to the weight of evidence, I hope that the newer 3-month regimen discussed in Science Daily or the older treatment outlined on Oley will prove beneficial for me, maybe even life-changing. It is worth trying because folks that had the jejuno-ileal bypass surgery have died. And I do not want to die. Now to find a doc to Rx this.
