Csf leak that wont heal
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Hey everyone
I am hoping that some brilliant minds here may be able to help me.About 8 months ago, i got a lumbar puncture. The doctor botched it, punctured my dura, and caused a csf leak.
This is actually not too uncommon, in fact, statistics now site that the dura is punctured in up to 25 percent of invasive spinal procedures, including even epidural.
Most people heal well.
I haven't.
I recieved a few rounds of epidural blood patches; where they literally inject your own blood into/ near the area where they think the leak is. They dont know exactly the mechanism, there are only 2 semi substantiated theories. One, is that the blood itself works as a sealant ( tempoeary) and then the long term and more important effect is that the blood actually stimulates tissue repair.
I did recover maybe 60 to 70 percent of the way, with likely a small residual leak after my second round of a blood patch, but then it "broke"
I am a young female, i cant really understand why my tissue is having such a hard time healing. According to the imaging there is nothing anatomical that would be interfering, it is just the way I am healing.
I was told by a physician many years ago I probably have ehlers danlos, which I think is contributing. I have been taking peogesterone, pregnenolone, vitamin d, vitamin k, t3 and t4, calcium ( via milk) magneosum,
Any ideas? This is truely awful. I cant be upright for more than 15 minutes at a time. Thank you -
@healingisposs18 Sorry that you had to undergo s botched procedure that affected your dura.
I asked the Delphi Ray Peat AI. Here's its answer:
The restoration of the myelin sheath and the recovery of a punctured dura mater involve overlapping principles in terms of metabolic and structural support, but they are distinct processes requiring tailored approaches. Both rely heavily on the body’s regenerative capacity, which is influenced by factors like energy metabolism, inflammation, and the availability of specific nutrients and hormones.
1. Myelin Sheath Restoration
The myelin sheath is a lipid-rich structure that insulates nerve fibers, and its repair depends on supporting the cells responsible for myelination, such as oligodendrocytes in the central nervous system. Key factors include:
Saturated Fats and Cholesterol: Myelin is composed largely of cholesterol and saturated fats. A diet rich in these, while avoiding polyunsaturated fats (PUFAs), supports the structural integrity of myelin [2][7].
Progesterone: Progesterone has been shown to promote myelin repair and protect against neuroinflammation. It enhances the survival and differentiation of oligodendrocyte precursor cells [1][7].
Thyroid Hormone: Essential for energy metabolism and myelin synthesis, thyroid hormone supports the overall regenerative process [1][6].
Niacinamide (Vitamin B3): This inhibits the release of fatty acids, protects against excitotoxicity, and supports the regenerative capacity of tissues, including myelin [2].
2. Recovery of Punctured Dura Mater
The dura mater, being a dense connective tissue, requires a different focus for healing:
Collagen Synthesis: The dura mater is rich in collagen, so nutrients like glycine, proline, and vitamin C are critical for its repair. Glycine, in particular, supports collagen synthesis and has anti-inflammatory properties.
Sulfur Compounds: MSM (methylsulfonylmethane) or other sulfur sources can contribute to the structural integrity of connective tissues by supporting disulfide bond formation in collagen.
Anti-inflammatory Support: Excessive inflammation can hinder healing. Progesterone and aspirin, in appropriate doses, can modulate inflammation without suppressing the regenerative process [2][7].
Energy and Oxygenation: Adequate glucose and thyroid hormone are essential to fuel the energy-intensive process of tissue repair. Avoiding hypoxia is critical, as oxygen is required for collagen cross-linking and overall healing.
3. Overlapping Supplementation
While the processes differ, there is some overlap in the supplementation needed for both:
Progesterone: Beneficial for both myelin repair and modulating inflammation in dura mater recovery.
Thyroid Hormone: Supports energy metabolism, which is foundational for all regenerative processes.
Niacinamide: Enhances energy production, protects against oxidative stress, and supports both nerve and connective tissue repair.
Glycine: Critical for collagen synthesis in the dura mater and as a precursor for glutathione, which protects against oxidative damage in myelin repair.
Vitamin
Essential for collagen synthesis and as an antioxidant to protect against oxidative stress in both processes.4. Specific Considerations for Dura Mater Recovery
The dura mater’s role in protecting the brain and spinal cord means that its repair must also address the risk of infection and cerebrospinal fluid (CSF) leakage:
Infection Control: Ensuring a sterile environment and possibly using natural antimicrobials like iodine or honey can be helpful.
CSF Support: If there’s a CSF leak, maintaining hydration and electrolyte balance is crucial to support fluid dynamics and healing.
Practical Suggestions
Focus on a diet rich in saturated fats, cholesterol, and high-quality protein to support both myelin and connective tissue repair.
Supplement with glycine (3–5 grams daily), niacinamide (50–100 mg with meals), and vitamin C (500–1000 mg daily) to enhance collagen synthesis and antioxidant defenses.
Consider progesterone (topical or oral, depending on individual needs) to modulate inflammation and support tissue regeneration.
Avoid PUFA-rich foods, as they can exacerbate inflammation and impair healing.
If you’d like to discuss specific dosages or refine this approach further, let me know. The interplay between these processes is fascinating, and tailoring the strategy to your needs can maximize the regenerative potential.
Temporal thinking is the faculty that’s
engaged by an enriched environment, but it’s
wrong to call it “thinking,” because it’s simply
the way organisms exist... - Ray Peat Nov 2017 Newsletter -
As far as electrolyte supplementation goes, here's the answer for the protocol:
Electrolyte supplementation should be tailored to your specific needs, taking into account your metabolic state, stress levels, and dietary habits. The goal is to maintain a balance of key minerals—sodium, potassium, magnesium, and calcium—while avoiding deficiencies or excesses that could disrupt cellular energy production or increase stress on the body. Here’s a practical approach:
1. Sodium
Sodium is essential for maintaining extracellular fluid balance, nerve function, and energy production. It works synergistically with potassium to regulate cellular hydration and metabolism.
Sources: Use high-quality salt (such as sea salt or Himalayan salt) liberally in your food. Sodium intake should be adjusted based on your stress levels, as stress increases aldosterone, leading to sodium loss [2][8].
Protocol: Start with 1/2 to 1 teaspoon of salt daily, divided across meals, and adjust based on your taste and symptoms (e.g., fatigue, low blood pressure, or muscle cramps). If you’re sweating heavily or under significant stress, you may need more.
2. Potassium
Potassium is primarily an intracellular ion, critical for nerve function, muscle contraction, and maintaining cellular energy production. It balances sodium and helps regulate blood pressure.
Sources: Fruits like oranges, melons, and ripe bananas are excellent sources. Coconut water can also provide potassium, but avoid overconsumption due to its high potassium-to-sodium ratio.
Protocol: Aim for 3,000–4,700 mg of potassium daily from food sources. If you’re supplementing, potassium bicarbonate or potassium citrate can be used cautiously, starting with 200–400 mg per day, taken with meals to avoid gastrointestinal discomfort.
3. Magnesium
Magnesium is crucial for stabilizing ATP, supporting mitochondrial function, and regulating nerve and muscle activity. It’s often depleted under stress or in hypothyroidism [3][6].
Sources: Leafy greens, coffee, dark chocolate, and magnesium-rich waters are good dietary sources. Magnesium glycinate or magnesium bicarbonate are excellent supplemental forms.
Protocol: Start with 200–400 mg of magnesium daily, divided into two doses. If you experience loose stools, reduce the dose or switch to a more bioavailable form like magnesium glycinate.
4. Calcium
Calcium is vital for bone health, nerve signaling, and muscle function. It also has anti-inflammatory and anti-stress effects, particularly when balanced with magnesium [2][6].
Sources: Dairy products like milk, cheese, and yogurt are the most bioavailable sources. If you’re not consuming dairy, eggshell calcium or calcium carbonate can be used as supplements.
Protocol: Aim for 1,000–1,500 mg of calcium daily, primarily from food. If supplementing, take calcium with meals to enhance absorption and avoid interfering with magnesium uptake.
5. Balancing Ratios
Sodium-to-Potassium Ratio: A ratio close to 1:1 is ideal, but slightly more sodium may be beneficial under stress. Avoid excessive potassium supplementation without adequate sodium, as this can disrupt cellular function.
Calcium-to-Magnesium Ratio: A 2:1 ratio (e.g., 1,000 mg calcium to 500 mg magnesium) is generally recommended, but individual needs may vary based on stress levels, thyroid function, and dietary intake.
6. Practical Tips
Hydration: Combine electrolytes with adequate hydration. A pinch of salt in water with a squeeze of orange juice can provide a balanced mix of sodium, potassium, and glucose to support cellular energy.
Monitor Symptoms: Pay attention to signs of imbalance, such as muscle cramps (low magnesium or potassium), fatigue (low sodium), or irritability (low calcium).
Avoid Excess: Over-supplementation can be as harmful as deficiency. For example, excessive magnesium can cause diarrhea, and too much calcium without magnesium can lead to calcification issues.
7. Special Considerations
If you’re under significant stress, recovering from illness, or experiencing symptoms of hypothyroidism, your electrolyte needs may be higher. In these cases, focus on increasing sodium and magnesium while ensuring adequate calcium and potassium intake.
For wound healing or recovery from injury, hypertonic saline solutions (e.g., seawater or concentrated salt solutions) have been shown to accelerate healing by improving cellular energy production and reducing inflammation [8].
This protocol provides a foundation, but individual needs can vary. If you’d like to discuss specific symptoms or refine this approach further, let me know!
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@yerrag wow thank you so much! Sorry can you specify which vitamin is critical for collagen synthesis? Vitamin c? It just shows up as a smiley face
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@healingisposs18 said in Csf leak that wont heal:
I was told by a physician many years ago I probably have ehlers danlos, which I think is contributing.
Gluten and lactose are very often poorly tolerated in EDS. Not everyone. This is likely due to the way EDS affects the gastrointestinal system, leading to increased sensitivities and intolerances.
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@healingisposs18 Yes. It's vitamin C.
You may want to directly ask the Ray Peat AI on follow up questions. It's been very helpful to me.
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For 8 months? This is crazy.
Some vitamin C is a good thought but I would double down on supplementing pantethine (B5), P5P (B6), biotin and choline and folate. For healing and lipid sheath synthesis.I don't hold taking T3 and T4 in good esteem in this context because it suppresses upstream TSH and TRH whereas increased TRH in the opposite would actually be promoting healing of spinal injuries AFAIK.
As for thyroid I'd rather meddle with potassium iodide to keep that Csf-production going well by the sodium iodide symporters instead of depending only on coffeine for minor symptom relief.
D3, K, Ca, Mg all seem pointless to me wrt a csf leak.
Prog or Preg I have no idea about in this context.
Sulphur compounds are another good idea, but not necessarily MSM. Anyhow the pantethine includes physiologically essential sulphur groups.
Perhaps drinking field horsetail infusion (for the soluble silicium) and some 100-200mg hyaluronic acid (<100.000kDa size) every day could be of marginal benefit.
Perhaps some red light therapy shining on your back could be of complementary healing benefit.
And this may read like a joke but is meant seriously: Be careful to never push to hard when on the toilet because that will exert pressure and reopen the leak. -
@CrumblingCookie you are absolutely right and its no joke - anything that could increase intracranial pressure including exertion while going to the bathroom is prohibited.
Can you explain more about trh?and potassium iodine i didnt understand.
Yes, 8 minths is insane and its been torture.
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silicon-maxxing
oatmeal, oat bran (high in oxalate so take with calcium source), French/green beans, non alcoholic beer, skin-on cucumbers, whole grain rices and wheats, raisins
pineapple too apparently, but it might have low absorption like bananas.
every time you eat a meal have a silicon source
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@sunsunsun interesting. You arent the first person to recommend thus to me. As much as i research, there is always more to learn.
Can you expand why on silicon? Are there safe supplements? U was under the impression that ray peat wasn't a fan.
Thank you
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@healingisposs18 said in Csf leak that wont heal:
Can you explain more about trh?and potassium iodine i didnt understand.
From all the above, don't focus on these two mentionings wrt to your csf leak.
The spinal fluid secretion from the choreum plexus is strongly dependent on sodium-iodide-symporters, i.e. both these minerals are transported across membranes together in glands other than the thyroid. It's a reason why iodide assists most bodily exocrine glands.
TRH helps heals spinal injuries if given shortly after e.g. accidents but I don't remember by what mechanisms exactly. IIRC it's mostly about regrowth/reconnection of separated nerves. If you're interested in this outside of your acute context you'd need to read that up for yourself. -
@CrumblingCookie said in Csf leak that wont heal:
Can you explain more about trh?and potassium iodine i didnt understand.
Secretion of the cerebrospinal fluid (CSF) is influenced by the NIS symporter
The Na + /I − symporter (NIS) is an intrinsic membrane protein that mediates the active transport of iodide into the thyroid and other tissues.I’ve made a google search with the following words:
TRH and The spinal fluid secretion from the choroid plexus is strongly dependent on sodium-iodide-symporterThe secretion of cerebrospinal fluid (CSF) by the choroid plexus is indeed influenced by the sodium-iodide symporter (NIS), though not in the way that directly relates to TRH. Here's a breakdown:
- NIS and CSF Secretion:
The choroid plexus, which produces CSF, contains NIS.
NIS is primarily known for its role in transporting iodide (I-) into thyroid cells.
While NIS is present in the choroid plexus, its role in CSF production is less direct than its role in thyroid hormone synthesis.
NIS helps create an electrochemical gradient by transporting sodium and iodide into the cells of the choroid plexus.
This gradient contributes to the overall ionic balance that drives water movement and CSF secretion.
However, the precise mechanisms and the extent to which NIS contributes to CSF secretion are still under investigation. - TRH and CSF:
Thyrotropin-releasing hormone (TRH) primarily influences the release of thyroid-stimulating hormone (TSH) from the pituitary gland.
TRH does not directly control NIS expression or activity in the choroid plexus.
NIS expression in the choroid plexus is influenced by other factors, such as the overall ionic environment and potentially other hormones.
In summary: NIS plays a role in CSF secretion by the choroid plexus, but this role is related to establishing the ionic gradients that drive fluid movement, not a direct or primary effect of TRH or thyroid hormone production.
Additional info on NIS symporters
- Iodine as a game changer (“What does iodine do for your body?”)
https://bioenergetic.forum/topic/3962/iodine-as-a-game-changer
Excerpt 1
There is the possibility of excess iodine, which may be a transient (26-40 hours) hypothyroidism as described by Dr. Brownstein in his book Iodine: Why You Need It. Why You Can't Live Without It. (7) Whenever we try to speed up the use / burning of iodine – so not leaving the TSH and the brain adjust the carburetor – there may happen a counter-reaction, due to a lack of progressiveness and the fact our NIS symporters (a kind of pump Na/I) are somewhat asleep / feel as if they were in a rut. NIS is a carrier system into all the cells, and when this system becomes deficient or lazy, due to lack of stimulation, the whole body can’t absorb the sudden amount. Deficiency of iodine may also contribute to low stomach acid and decreased ability to absorb B12 and calcium.
If one is only diagnosing hypothyroidism based on TSH scores (as most allopaths do), one may become confused. We’d better take into account our feeling (…). - Understanding NIS symporters
See &. Regulation of iodide transport (on the second reference)
*) Iodide transport: implications for health and disease
DOI : https://doi.org/10.1186/1687-9856-2014-8
Pesce, L., Kopp, P. Iodide transport: implications for health and disease. Int J Pediatr Endocrinol 2014, 8.
https://ijpeonline.biomedcentral.com/articles/10.1186/1687-9856-2014-8
Regulation of iodide transport
Iodide transport is dependent on the nutritional availability of iodide and on the stimulation of the thyroid stimulating hormone receptor (TSHR). Although the TSHR is constitutively active, it is susceptible to enhanced activation by TSH [31, 32]. In addition, iodide uptake and organification are inhibited by high intracellular concentrations of iodide. Other factors have been shown to regulate iodide uptake, including thyroglobulin, cytokines, growth factors and estradiol.
*) Importance of Iodine Intake beyond the Thyroid
https://mirzoune-ciboulette.forumactif.org/t2094-english-corner-importance-of-iodine-intake-beyond-the-thyroid#30105
In a state of thyroid sufficiency where does iodine go to?
Impact of NIS expression in non-thyroidal tissues
=> The Na + /I − symporter (NIS) is an intrinsic membrane protein that mediates the active transport of iodide into the thyroid and other tissues.
*) Toxicité de l’iode – La fin d’une erreur médicale
https://mirzoune-ciboulette.forumactif.org/t2087-toxicite-de-liode-la-fin-dune-erreur-medicale?highlight=iode
*) Iode et iodure de potassium – À contre-courant
https://mirzoune-ciboulette.forumactif.org/t1978-iode-et-iodure-de-potassium-a-contre-courant#28898
=> Why the hype on thyrotoxicosis of inorganic iodide?
=> Wolff-Chaikoff effect explained (protection of the brain).
*) Hashimoto et iode
https://mirzoune-ciboulette.forumactif.org/t1113-iode-anti-goitre-et-fluor-brome?highlight=iode
=> First take selenium before taking iodine.
=> Useful nutrients for the thyroid.
*) La supplémentation en hormones thyroïdiennes masque la carence en iode
https://mirzoune-ciboulette.forumactif.org/t2090-la-supplementation-en-hormones-thyroidiennes-masque-la-carence-en-iode?highlight=iode
*) Souffrez-vous d’iodophobie ? Fatigue surrénale ?
https://mirzoune-ciboulette.forumactif.org/t2092-souffrez-vous-diodophobie-fatigue-surrenale
https://mirzoune-ciboulette.forumactif.org/t2092-souffrez-vous-diodophobie-fatigue-surrenale#30094
Voir &. Zoom sur les symporteurs NIS
Excerpt :
Lorsqu'il y a saturation de la thyroïde (les besoins de la thyroïde sont satisfaits en 1er lieu, par priorité), les autres tissus / muscles sont alors approvisionnés, si tant est que vous ne compliquiez pas le chemin d'accès. Comprenez que les "transporteurs NIS" doivent être rééduqués (apport progressif) et que la place sur ces transporteurs / symporters est limitée (ou peut être contrariée). (12) Concurrence avec le Ca et le fer. (13)
Les symporteurs sont en quelque sorte des récepteurs, un type de pompe qui permet l’échange NA/I (sodium / iode) sur plusieurs tissus, situés un peu partout dans le corps. Pas que pour la thyroïde, donc. Ce phénomène est capital à comprendre; car il explique les hausses parfois brutales de TSH lors d'une supplémentation massive en iode. (12)
- NIS and CSF Secretion:
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@healingisposs18 silicon abundance builds resilient tissue. RP didn't appreciate it at first but later admits it is necessary. that's the extent that I've seen him mention it.
The supplements aren't really worth taking. Their absorption is the same as the better food sources or liquids. You may say, who cares, you can take high doses of a supplement--- well the most popular Si supplement is the choline-stabilized Si, and to get a relevant Si dose from it you'd be hitting supplemental choline really hard, which for most people doesn't feel good. There's other forms of supplemental Si as well but I stopped investigating them since most of the foods in the list I provided above have high absorption and are just normal foods most people can include in their diet anyways.
High Si mineral waters or beer have better aborption than the supplements, actually.
An important theme around Si-abundance in nutrition is that it negates 'deficiencies' or suboptimal intakes of other nutrients. This is true for copper, specifically. As well, when ovariectomiized rats are given abundant Si in their diet, the bone-density loss that the non-Si group gets doesn't happen. So Si in abundance may also helps negate suboptimal hormones.
