Anyone with Ehlers Danlos and chronic pain flare ups find a solution?

@notmcas I left out the part of my story about me getting rheumatoid arthritis and losing the use of my thumbs. Estrogen begets inflammation and inflammation really hurts. She'll come around.

shedim

I supposedly had EDS, symptoms such as scoliosis, weak and loose ligaments, arthritis symptoms, etc. However after some deep digging I came to the conclusion that it was actually being caused by Glyphosate in food which denatured and negatively affected collagen (can find all studies and relevant info soon which led me to this conclusion if needed).

Entirely solved this when I had took a month long sabbatical to a family home abroad where all food was farmed themselves and therefore not sprayed with toxic pesticides, first thing I noticed was improvements in posture and then joints "sitting" better, I'd hear things crack and pop back into the right place. It never returned after that. My thoughts are that it can heal itself but only as long as the gut is able to stay in good condition for long enough time, another factor is during this time I had relatively low stress levels whereas usually mine are high.

notmcas

@shedim I’ve read about that theory before. Supposedly supplemental glycine could offset the glyphosate. Have you tried this or has your improvement stuck around after returning to your typical lifestyle?

@shedim I searched for "thiamine" and "glyphosate" and found this interesting article:
Evidence that glyphosate is a causative agent in
chronic sub-clinical metabolic acidosis and
mitochondrial dysfunction
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"Well-established is the fact that ingesting large
amounts of glyphosate causes metabolic acidosis and other
pathophysiologic changes. Clinical signs of acute
glyphosate poisoning include severe acidosis determined
by low blood pH, hyperkalemia, hypernatremia, raised
creatinine and blood urea levels, hypotension, hypoxemia
and reduced serum bicarbonate. Severe poisoning causes
dehydration, pneumonitis, oliguria, altered level of
consciousness, hepatic dysfunction, pulmonary edema and
dysrhythmias. 1,2,3 We submit by logical extension that
ingesting low levels of glyphosate on a continuous basis
can contribute to sub-clinical, low-grade acidosis. We have
identified several mechanisms by which glyphosate can
cause metabolic acidosis and acquired errors of
metabolism and have presented the data and citations in
the Background section of this paper.
Lactic acidosis is a high-ion gap metabolic acidosis
caused by overproduction and/or underutilization of
lactic acid. Lactic acid is overproduced when tissues
are deficient in oxygen, forcing the conversion of
pyruvate to lactate in anaerobic glycolysis
(fermentation). Pyruvate, the sole precursor of lactic
acid, is utilized by the mitochondria in aerobic cellular
respiration. Lactic acid can be converted to glucose via
pyruvate dehydrogenase (requires thiamine and other
nutrients that are commonly deficient) or oxidized.
Lactate is oxidized in the liver via bicarbonate. The
kidneys also dispose of lactate, albeit to a lesser extent.
The possible causes of lactic acidosis are oxygen deficit
(tissue hypoxia) resulting from pulmonary or circulatory
problems, thiamine deficiency, liver disease, renal
failure, and uncoupling of the oxidative phosphorylation
(OxPhos) step in the Krebs cycle. Prolonged acidosis
leads to multiple organ failure and death.4"

If you search the page for "thiamine", you will find the article Hiding in Plain Sight by Dr. Chandler Marrs and Dr. Derrick Lonsdale, (quote provided):
"... Rounding out the modern threats to thiamine status in developed countries, pervasive exposures to environmental chemicals and industrial pollutants, damage mitochondrial functioning, even at low, and what are considered, non-toxic exposures [152,[177][178][179][180] accelerating the need for thiamine and other mitochondrial nutrients. ..."

shedim

@notmcas improvement has definitely stuck around, before that I had a rotator cuff injury which was chronically recurring (kept dislocating) and just wouldn't heal, however now it is entirely healed. Where I previously felt "holes" in my infraspinatus, no such holes exist anymore. PT helped considerably but up until that point, even PT wasn't really making much of a difference.

I also do take a multivitamin which contains D3, Calcium, magnesium, Zinc, Maganese, Copper, K2, Selenium & Boron. Besides this, I took Lornoxican and Thiocolchicoside daily under recommendation of a doctor back in my families country, it was for two weeks. I have also been putting a lot of conscious effort onto repairing my posture as well as this, mostly using a foam ball for my back, physio bands for mobility exercises, and also laying flat on the floor for about 20 mins a day (also ensure sleeping posture is good and you have a good pillow).

What I will say is that any issue I faced before is gone, even now back to my "normal life" which has pretty high stress exposure I've noticed my skin doesn't flare up with spots or get flaky anymore either, so for now I'd assume this to be "permanent" fingers crossed.

Suffering from EDS is definitely not a fun thing to experience but I have faith you can get past it and solve it.

shedim

@mostlylurking Great find, I think a proper supplementation & detoxification protocol could solve many "genetic" and "lifelong" issues people face today, since things like this are so prevalent everywhere. Glyphosate is honestly poison and it's utterly criminal that so many people are being exposed to it on a daily basis without even knowing the danger behind it.

Fun fact, the same company who produce this pesticide in bulk today used to produce Agent Orange during the Vietnam war, seems like they never stopped making chemical weapons

@shedim said in Anyone with Ehlers Danlos and chronic pain flare ups find a solution?:

Glyphosate is honestly poison and it's utterly criminal that so many people are being exposed to it on a daily basis without even knowing the danger behind it.

Fun fact, the same company who produce this pesticide in bulk today used to produce Agent Orange during the Vietnam war, seems like they never stopped making chemical weapons

I may be mistaken about this, but it is my understanding that glyphosate and agent orange are pretty much the same thing.
https://www.hillandponton.com/weeds-not-worth-killing-with-roundup/

My husband is a disabled Vietnam War vet, with Agent Orange exposure. A couple of years ago, the VA admitted that Agent Orange exposure causes hypothyroidism. When that info came out, my husband finally got on board with my efforts to address his hypothyroidism. He's taking NP Thyroid now and acts like he is 15 years younger. He also takes 200mg of TTFD thiamine daily.

So I believe that glyphosate damages oxidative metabolism multiple ways: it causes hypothyroidism and it also wreaks havoc by exacerbating the need for thiamine which causes thiamine deficiency.

notmcas

@mostlylurking I’m always a bit nervous about multivitamins, I’m relatively healthy myself but sometimes I’ll try one and I get an absolutely horrible reaction. I’ve tried brewers yeast with boiling water and it was much more tolerable to me but still I prefer to just drink lots of milk with liver and shellfish. But I think she might need doses that aren’t realistic with food. Maybe a month retreat to a high altitude cabin is good for people too

@notmcas said in Anyone with Ehlers Danlos and chronic pain flare ups find a solution?:

I’m always a bit nervous about multivitamins, I’m relatively healthy myself but sometimes I’ll try one and I get an absolutely horrible reaction. I’ve tried brewers yeast with boiling water and it was much more tolerable to me but still I prefer to just drink lots of milk with liver and shellfish. But I think she might need doses that aren’t realistic with food. Maybe a month retreat to a high altitude cabin is good for people too

I'm not a fan of multivitamins either. It seems they always put things in there that I don't want to take. So I take individual pure powdered vitamins that I get mostly from purebulk.com . These don't have any excipients and I can test a single thing alone to evaluate how I react to it.

A month retreat to a high altitude cabin sounds fabulous. Ray Peat has said that it will increase the carbon dioxide level in your body's tissues. Carbon dioxide is very beneficial; it is anti-inflammatory. Taking a thiamine supplement optimizes oxidative metabolism which results in the end product being carbon dioxide (anti-inflammatory) instead of lactic acid (inflammatory).

@notmcas I found a study that you may find of interest:
Thiamine Deficiency and High Estrogen Findings in Uterine Cancer and in Menorrhagia
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The finding of abnormal estrogenic activity coupled with thiamine deficiency in cases of menorrhagia and uterine cancer suggests a possible etiological correlation between the dietary deficiency, the abnormal estrogen level, and the pathological lesion. The specific element deficient in these cases was thiamine, while the other B factors were normal. Preliminary report of the evidence is made in this small series while more extensive studies on a large series of cases are being pursued. Cornification in cytology smears was used to study estrogenic activity, since the present study was prompted by cytological findings; the method is simple, practical, and reasonably accurate. The urinary estimation measures only the amount excreted, and if liver impairment actually is present, the quantity excreted would not give a true index of the amount retained in the body. Further studies are being undertaken in which estrogenic, urinary, and cornification levels are being compared before and after thiamine administration in cases proven to be deficient.
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This study shows up a LOT in search results; you may be able to find the full study posted somewhere on line.

notmcas

@mostlylurking Thank you, I'm very keen on her looking into the high dose thiamine, she's tried ALLITHIAMINE(TTFD) before for a few days but didn't notice anything substantial and stopped, maybe hcl is the best route.

I think a full estrogen test is definitely warranted in these cases. Unfortunately it's not an uncommon a story anymore, and even more unfortunate is that doctors seem pretty unwilling to order a test for even estradiol at least in the US. I think I want to order one for total e, estradiol, and progesterone. Another big thing is that progesterone can remove estrogen from the cell/tissues but like you noted it's possible to get a detox reaction from the freed estrogen especially with an impaired liver.

Maybe I'm wrong on this but it makes me think that to detox from estrogen quickly someone would want to take some calcium d glucarate since attaching glucaronic acid to estrogen is how it's made water soluble and excreted in the urine... and to either so something like a milk fast prior to this to heal up the liver or take an aromatase inhibitor to block some of the estrogen activity while detoxing similar to how bodybuilders will use PCT's?

@notmcas It's my understanding that thiamine resolves inflammation by lowering lactic acidosis.

I've also read that thiamine "modulates" nitric oxide (NO), meaning that thiamine deficiency can cause cardiovascular disease and thiamine deficiency also can cause increased brain endothelial nitric oxide synthase (brain inflammation). Nitric oxide is inflammatory; the right amount at the right place at the right time is helpful; too much for too long is dangerous. It is important to understand that thiamine deficiency derails the control of nitric oxide release. It makes sense that thiamine deficiency would do so because thiamine is required for the autonomic nervous system to function properly.
additional links:
Ray Peat audios about nitric oxide
Ray Peat's written work about nitric oxide
Thiamine and magnesium deficiencies: Keys to disease

@notmcas said in Anyone with Ehlers Danlos and chronic pain flare ups find a solution?:

I think a full estrogen test is definitely warranted in these cases. Unfortunately it's not an uncommon a story anymore, and even more unfortunate is that doctors seem pretty unwilling to order a test for even estradiol at least in the US. I think I want to order one for total e, estradiol, and progesterone. Another big thing is that progesterone can remove estrogen from the cell/tissues but like you noted it's possible to get a detox reaction from the freed estrogen especially with an impaired liver.

According to Ray Peat, all estrogen is carcinogenic; they vary a little in how strongly each is carcinogenic, but the fact that each can morph into another makes me think that simply focusing on things that lower estrogen in general is the important thing. PUFA (polyunsaturated fats) are all estrogenic so banishing it from the diet is very important. There's lots of toxic estrogenic pollution floating all around us. Lots of plastics (all?) are estrogenic. So purging the pantry and the bathroom of iffy items would be a really good idea.

The role of environmental estrogens and autoimmunity

Ray Peat on estrogen in his written work
Ray Peat on estrogen in his interviews

Liver function is very important
Ray Peat on liver function, audio shows
Ray Peat on liver function, written work

also this one may be of interest:
https://www.functionalps.com/blog/2012/07/05/menstrual-cycle/

frankincense

@notmcas based on what you’re describing and you mentioning that prednisone brings relief, have you considered that mold exposure could be contributing? Have you been tested for mycotoxins?

BartL

@mostlylurking have you ever tried to get off the supplements ? If metabolism starts working in theory you should be able to back of the supplements and getting the nutrients from food would you agree?

Btw, really appreciate you sharing your (healing) story. It gives hope. I'm in a similar bad spot. I'm working on my healing, I take high dose benfo, thiaminHCL seem to crash my bg hard. But it's a long road, my digestion is so poor, continuous bloating and get really dizzy and week from food

@BartL said in Anyone with Ehlers Danlos and chronic pain flare ups find a solution?:

have you ever tried to get off the supplements ? If metabolism starts working in theory you should be able to back of the supplements and getting the nutrients from food would you agree?

If you do not have a lifetime to toxins stored in your body that include things like mercury (like I do), and if your genetics are such that your body is oriented to work perfectly with minimal nutrients, I suppose that might be possible.

I have mercury toxicity from mercury amalgam fillings that were put in my teeth when I was a child. When I was in my early twenties they started crumbling out of my teeth. Each time one fell out, the dentist replaced it with a gold inlay. No safety protocol was ever used, not even a dental dam. So I have long term health problems. The mercury causes my body to have high oxidative stress/reactive oxygen species. I am able to live better with my supplements than I am without them. The mercury inside me is not going to just go away; it's there for the duration. Here's a list of sources for mercury exposure.

@BartL said in Anyone with Ehlers Danlos and chronic pain flare ups find a solution?:

Btw, really appreciate you sharing your (healing) story. It gives hope. I'm in a similar bad spot. I'm working on my healing, I take high dose benfo, thiaminHCL seem to crash my bg hard. But it's a long road, my digestion is so poor, continuous bloating and get really dizzy and week from food

Thanks.

About your blood glucose crashing hard from the thiamine hcl: I've sort of amalgamated Ray Peat's teaching with Dr. Derrick Lonsdale's teaching; it works for me but others may have trouble reconciling the two schools of thought in their minds.

Ray Peat taught that sugar is good because it counteracts the stress hormones. Dr. Lonsdale teaches that sugar is bad because lots of people get thiamine deficiency from consuming it. Ray Peat taught that if you don't consume carbohydrates/sugars that your body will make the glucose it requires by dissolving your muscles so your brain and organs will have the energy to function so you don't die. Dissolving your own muscles with cortisol is a really stressful way to provide glucose to survive. So I have chosen to take high dose thiamine hcl (it's literally changed my life) so that I can consume a healthy diet that includes soft, ripe, juicy fruit, OJ, milk, cheese, eggs, gelatin, some beef, etc. and also have enough thiamine (B1) to utilize the nutrients I get from my diet.

Thiamine does more than just being a co-factor for multiple steps in the Krebs cycle which converts glucose into energy. Thiamine is also used to counteract/resolve high stress. Thiamine resolves body/brain stress.

Interactions of oxidative stress with thiamine homeostasis promote neurodegeneration
"Abstract: Thiamine-dependent processes are diminished in brains of patients with several neurodegenerative diseases. The decline in thiamine-dependent enzymes can be readily linked to the symptoms and pathology of the disorders. Why the reductions in thiamine linked processes occur is an important experimental and clinical question. Oxidative stress (i.e. abnormal metabolism of free radicals) accompanies neurodegeneration and causes abnormalities in thiamine-dependent processes. The vulnerability of thiamine homeostasis to oxidative stress may explain deficits in thiamine homeostasis in numerous neurological disorders. The interactions of thiamine with oxidative processes may be part of a spiral of events that lead to neurodegeneration, because reductions in thiamine and thiamine-dependent processes promote neurodegeneration and cause oxidative stress. The reversal of the effects of thiamine deficiency by antioxidants, and amelioration of other forms of oxidative stress by thiamine, suggest that thiamine may act as a site-directed antioxidant. The data indicate that the interactions of thiamine-dependent processes with oxidative stress are critical in neurodegenerative processes."

also:

"Conclusions:
Regarding thiamine as a select antioxidant may be useful in terms of revealing the role of thiamine dependent processes in disease and other conditions that lead to altered neuronal function** (Fig. 5). Overwhelming evidence indicates that oxidative stress accompanies neurodegeneration. Several lines of evidence suggest that thiamine homeostasis may reflect the oxidative state of cells. The reduction in thiamine-dependent enzymes in multiple neurodegenerative disorders may indicate that the cells...."

also this article:
The impact of oxidative stress in thiamine deficiency: A multifactorial targeting issue

"Vitamin B1 (thiamine) deficiency is a disorder involving impairment of oxidative metabolism in which selective cerebral vulnerability is a major consequence. This is manifested in the form of Wernicke–Korsakoff syndrome (WKS), a serious and potentially life-threatening neuropsychiatric disorder (Carmichael and Stern, 1931) consisting of Wernicke’s encephalopathy (WE), the neurological component of the disorder characterized by acute thiamine deficiency (TD) in association with confusion, ophthalmoplegia, and ataxia but no permanent structural damage, and Korsakoff’s psychosis, a debilitating amnesic state due to chronic TD and accompanied by irreversible diencephalic lesions. Neuropathologically, the disorder is characterized by focal areas of the brain developing symmetrical hemorrhagic and ischemic-like lesions, occuring most frequently in diencephalic structures, in particular the thalamus and mammillary bodies (Fig. 1), extending caudally through the midbrain (inferior colliculus) and brainstem areas that include the vestibular nuclei and inferior olivary complex (Victor et al., 1989)."

"Pathophysiology of thiamine deficiency: The pathophysiological mechanisms involved in TD are complex. Four major enzyme systems utilize thiamine in the form of thiamine diphosphate (TDP) as a major cofactor, i.e. pyruvate dehydrogenase (EC 1.2.4.1) complex (PDHC), an organized enzyme assembly that connects glycolysis with the tricarboxylic acid (TCA) cycle, α-ketoglutarate dehydrogenase (EC 1.2.4.2) complex (KGDHC), a multicomponent enzyme complex associated with the TCA cycle, transketolase (EC 2.2.1.1) (TK), a key participant in...

Oxidative stress and excitotoxicity in TD: Considerable evidence for development of oxidative stress has been demonstrated in TD, including the presence of increased production of reactive oxygen species (ROS) (Langlais and Zhang, 1997), and increased expression of heme oxygenase (HO-1) and intercellular adhesion molecule-1 (ICAM-1) (Gibson and Zhang, 2002) as well as microglial activation (Todd and Butterworth, 1999), along with induction of the endothelial isoform of nitric oxide synthase (eNOS) (Hazell and Butterworth, 2009).

Oxidative stress and inflammatory processes: Neuroinflammation is now recognized as a key component of a variety of neurological diseases that include stroke, multiple sclerosis and Alzheimer’s disease (AD), along with other problems of the brain such as brain trauma. During the 1960s, alterations in glial cell morphology in TD including evidence of swelling and the appearance of phagocytic vacuoles (Collins, 1967, Robertson et al., 1968) were first reported. These findings are consistent with pathological changes that can be attributable...

Oxidative stress and mitochondrial dysfunction: Mitochondria have three main functions: generation of ATP, production of reactive oxygen species (ROS) and inhibition of apoptosis. FADH2 and NADH formed in glycolysis, fatty acid oxidation, and the citric acid cycle are used to reduce oxygen to water by a series of electron carriers located in the inner mitochondrial membrane. Mitochondria are a major source of ROS, and also a target, in which case structural damage and activation of signaling pathways can result. Loss of mitochondrial...

Apoptosis and oxidative stress in TD: Every day millions of cells die due to physiological and pathological causes. Oxidative stress is a major contributor to the demise of these cells, with a diverse protective system having evolved to enable adaptation to such oxidative environments and preventing the progression of the oxidative stress and further damage to cells (Limón-Pacheco and Gonsebatt, 2009). However when these protective mechanisms become compromised, e.g. under conditions of impaired mitochondrial function, such...

BBB dysfunction and oxidative stress in TD: The BBB consists of a complex of capillary endothelial cells, pericytes and astroglial perivascular macrophages that serve as a barrier to the entry of lipophobic substances into the brain, and thus performs an important function in regulating transport, both into and out of the brain (Provenzale et al., 2005; Bart et al., 2000). Numerous studies in the past indicate that breakdown of the BBB occurs in TD (Warnock and Burkhalter, 1968, Manz and Robertson, 1972, Watanabe, 1978, Harata and...

Role of oxidative stress on nucleic acid function: As indicated above, several studies have demonstrated evidence for oxidative stress in TD. ROS production under these conditions can target both proteins and nucleic acids, and in the case of the latter, has the capacity to cause changes in these nucleic acids, altering their structure and leading to fragmentation (Jena, 2012). Mitochondrial (mt)DNA is most affected, probably due to their greater proximity to these ROS (Wei et al., 1998). The lesions in nucleic acids can occur due to direct
Influence of oxidative stress on neural stem cells

Future treatment strategies for WKS may involve the use of stem/progenitor cells. Since oxidative stress is a major contributor to brain pathology in TD, understanding how these cells respond following exposure to ROS is an important consideration. Oxidative stress is suspected to be a major cause of cell death in neural stem cells (NSCs) implanted in the CNS. The injection of cells into the cerebral parenchyma can produce oxidative stress at the site of administration following penetration
Therapeutic strategies targeting oxidative stress in neurodegenerative disease

While TD provides a useful template for studying the pathophysiology of neurodegenerative diseases (Jhala and Hazell, 2011), the incidence of conditions like PD and AD continues to increase with life expectancy, especially in industrialized countries. Such neurodegenerative disease states carry a heavy burden for the patients affected and also the health care system. The neurodegeneration observed in these diseases can be caused by oxidative stress. During neurodegeneration, the main ROS...

Conclusions: Due to its influence on cerebral energy metabolism, TD has major consequences on a variety of cellular processes, particularly those that require a plentiful supply of glucose. Oxidative stress targets many of these processes and, once initiated, can therefore reduce the threshold for developing injury, resulting in earlier onset of functional impairment than would otherwise be expected in its absence. This multifactorial attack on many vital functions of the cell suggests that once initiated...."
-end paste-

All living matter require thiamine to live. Evidently, something is happening on the planet that is reducing the availability of thiamine. Researchers have noticed and are trying to sound the alarm.

@BartL said in Anyone with Ehlers Danlos and chronic pain flare ups find a solution?:

I take high dose benfo, thiaminHCL seem to crash my bg hard. But it's a long road, my digestion is so poor, continuous bloating and get really dizzy and week from food

I want to suggest that you spend some time over at Dr. Costantini's website. He was a neurologist in Italy who successfully treated thousands of Parkinson's Disease patients with thiamine hcl. He treated his patients mainly with injections of thiamine hcl, but he also used oral thiamine hcl. His Therapy page provides the information needed to convert the dose of 100mg thiamine by injection into what is needed if taking thiamine hcl by mouth. You see, thiamine hcl has a very poor absorption rate via the intestine so a massive amount needs to be taken orally compared to if taking it by injection.
links:
Who was Dr. Costantini
Therapy
Frequently Asked Questions
Patients' before and after videos
Dr. Costantini's research papers

Dr. Costantini said that people should not have any negative reactions to high dose thiamine hcl if the dose is calibrated correctly for them. The information provided on the Therapy page gave me the courage and understanding to increase my oral dose to 1 gram of thiamine hcl, taken 2Xday, with water only, 30 minutes away from consuming food.

The only time I had a negative reaction to taking high dose thiamine hcl was when I tried taking 2.5 grams of it in one day. That night, I experienced shooting electrical zapping pains in my thighs when I went to bed. That experience told me that I had overdone it so I resumed taking 1 gram of thiamine hcl, 2Xday, with the understanding that this indeed is my optimum dose.

notmcas

@frankincense I’m suspicious of mycotoxins for sure. But the tests aren’t very accessible, I have to argue with the doctors to insist they do them. They seem to not want to test anything.

notmcas

@mostlylurking Have you had any experiences with sublingual thiamine to avoid risk of digestive upset? I know it’s not fat soluble but maybe it could work in a ethanol solution or something?