I feel like giving up on life

drob31

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Issues after K2 makes me think there is some autoimmune component like antiphospholipid antibodies.

The joint issues sound like polymyalgia rheumatica, or RA variants. AI diseases can occur together, like MS and RA.

If you were able to get a test of your cytokines and maybe target whatever is high, like IL6, TNF-a.
 

Jesse2233

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im sorry to hear what you're going through, it sounds very difficult and I hope it gets better soon

I've got no advice on the medical issues, but here's some hope...

- Fluge and Mella are showing great promise with Rituximab and Cyclophosphamide, and based on the reports coming out of Kolibri and OMI, we have strong reason to believe Phase 3 will be a success

- Ron Davis, Robert Naviaux, and co are making breakneck strides in identifying a biomarker, explaining the underlying metabolics / genetics, and finding existing treatments to repurpose

- Jared Younger, Nancy Klimas, Kenny De Meirleir, Daniel Peterson, Derick Enlander, John Chia, Peter Rowe, Suzanne Vernon, and others have ongoing studies poised to show further breakthroughs

- Francis Collins and the NIH are increasing funding and studies

- The FDA is poised to speed up drug approval and reduce regulation increasing the odds that Ampligen and other drugs are approved

- More broadly the converging forces of Big Data, expanding biomedical research, increased philanthropic spending, artificial intelligence, nanotechnology, personalized medicine, and genetic therapy all point to an environment where new treatments and cures are more likely than ever before

On a personal note you may still find the right treatment and improve substantially, or you may experience a spontaneous improvement / remission.

Dr Kaiser, Dr Jason, Dr Lerner, and Dr Gottfries all had the disease for various periods of time and all improved enough to resume working

Many members of the Ampligen and Rituximab trials have resumed their normal working lives, and anecdotally I've seen many stories here and in other places of Canadian Consensus Criteria patients regaining full or close to full functionality
 

Konflict

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@Tunguska yea I was supplementing vitamin D and a B complex and multivitamin for 5 years prior to taking the vitamin E and K2. I was still using the D while using the E and K2.

I've thought about maybe using pregnenolone or progesterone, but I really would like a complete hormonal panel done first so I can see where all my hormones stand from the same reading.....I'm thinking of getting a urine hormonal metabolites test from Dutch or Genova.

The thing about finasteride is many users have had long lasting effects.....it is said to possibly bring on epigenetic changes which cause low androgenic systems in men. Also gaba and allopregenolone are super important for anyone and god knows why they have drugs on the market that Inhibjt these things. What would be the best solutions to raise allopregenolone long term? Some people have tried using a supplement called 5aDHP but has shown minimal effects. I wish there was a way to test for resistance of certain hormones .

Thank you for the replies you're very knowledgeable about a lot of this.
 
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Konflict

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@johmil yes I'm not sure worried about it being Lyme, I live in the Bay Area and there's no ticks around here.....most likely it's due to some long lasting side effect from the finasteride mixed with a new change brought on by the E/K2.

Thank you for the Dr suggestion , if things get worsening will have to start paying out of pocket somehow to get better treatment.

No o haven't seen a specialist, only my regular Dr and he seems like a joke....saying all these symtoms cannot happen acutely like I'm telling him. I have some blood work I can post it In a separate post just to show what I do have.
 
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Konflict

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@drob31 how would I get a test to test for those things? Is this something a Dr can give me or one I'd most likely have to pay out of pocket for?
 

Konflict

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Labs from 12/13/16:
Testosterone, Free: 49.6 pg/mL (46.0 - 224.0 pg/mL)
Testosterone: 295.20 NG/dL (175 - 781 NG/dL)
T3, Free: 3.88 PG/mL (2.5 - 3.9 PG/mL)
TSH: 0.96 uIu/mL (0.34 - 5.60 uIu/mL)
Vitamin B-12: > 1500 PG/mL (200 - 914 PG/mL)
Vitamin D3: 43 ng/mL (30 - 100 ng/mL)
Vitamin D2: < 4 ng/mL

Labs from 1/24/17:
TSH: 2.75 uIu/mL (0.34 - 5.60 uIu/mL)
T3 Free: 3.55 PG/mL (2.5 - 3.9 PG/mL)
DHEA: 213.6 uG/dL (5 - 690 uG/dL)
Total Estrogens: 88 pg/mL (60 - 190 pg/mL)
Estradiol: 18 PG/mL (<40 pg/mL)
Free Testosterone: 62.7 pg/mL (46.0 - 224.0 pg/mL)
Testosterone: 341.27 NG/dL (175 - 781 NG/dL)
Vitamin D3: 45 ng/mL (30 - 100 ng/mL)
Prolactin: 10.4 NG/mL (2.6 - 13.1 NG/mL)
Glucose: 101 MG/dl (70 - 140 MG/dL)

Sodium: 136 MMOL/L. (35 - 143 MMOL/L)
Potassium: 4.2 MMOL/L. (3.6 - 5.1 MMOL/L)
Chloride: 99 MMOL/L. (98 - 107 MMOL/L)
C02: 30 MMOL/L. (22 - 30 MMOL/L)
BUN: 8 MG/dL. (7.0 - 21.0 MG/dL)
Creatinine: 0.8 MG/dL. ( 0.6 - 1.2 MG/dL)

Labs from 2/6/17:
Cortisol - 11.22 UG/dL (6.7 - 22.6 UG/dL)
Lactate Dehydrogenase - 114 IU/L (98 - 192 IU/L)
C-REACTIVE PROTEIN,HIGH SENSIT - 0.05 MG/dL (0.0 - 0.7 MG/dL)
Sedimentation rate Automated - 2 MM/HR (0 - 15 MM/HR)
LYME AB IGG - NEGATIVE
LYME AB IGM - NEGATIVE
Rheumatoid Factor < 7 IU/mL < 14 IU/mL
 

Gondwanaland

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@Konflict what I am going to share is exclusively based on my personal experience re activation of estrogen receptors.

Last December I started estrogen replacement therapy after going thru hell from taking Evening Primrose Oil (progesterogenic) and felt immediate relief. However, in an unrelated situation, I started taking proteolytic enzzymes containing DPP-IV (dipeptidyl-IV) and could tell FOR SURE that it activated my estrogen receptors. Looking into it, I found that protease inhibitors are given as adjuvant therapy in breast cancer treatment.

Later I was going to experiment with Artemisia absynthum, and took one leaf, chewed on it and spat it out (didn't swallow) and got the same reaction as to DPP-IV, even stronger. I never tried it again because it is poisonous and can cause liver and kidney damage.

The symptoms that made clear for me that I had activation of estrogen receptors were breast and ovary pain + extreme moodiness (bitchyness). Also I started looking myself in the mirror again, getting into stores and trying on clothes and shoes. I didn't take the DPP-IV long enough to actually made me buy stuff though ;)

I had to interrupt the intake of proteolytic enzymes due to excess uric acid and kidney pain.

My experience with methylation back in 2014 was less severe but similar to yours, and the only dr that listens to me (despite being almost as harmful as the endos, gynos, GI etc I saw) is an integrative dr who is familar with vitamins, enzymes and probiotic prescription. Additionally I also see a dr specialized in bioidentical hormones who has no idea about vitamins or enzymes.
 

Gondwanaland

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sorry for the multiple posting, but you could test for homocysteine, some people here got very low homocysteine after long-term B6 supplementation (and possible transsulfuration upregulation from that).
 

Hilary

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Hi @Konflict - I can't add anything of medical/scientific benefit but, as others have said, now is very much a time to have hope, not to give up - And there is a great deal of support and kindness on this forum to help you at a difficult time.

Thinking of you and wishing you well.
 

Konflict

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@Gondwanaland thanks for the reply, I remember talking a little bit about Estrogen before in another thread with you. So you think taking protease inhibitors stimulates the ER? It's all my theory that the ER is being blocked based on my side effects and how I understand how vitamin E works on the ER (possible epigenetic change I caused?)

https://raypeatforum.com/community/threads/vitamin-e-is-an-estrogen-receptor-antagonist.8506/

Also like someone else said I may also have some cortisol resistance, as I have many of the signs of adrenal fatigue. I have hypersensitive sense (smell And hearing greatly increased) and signs of low E also (joint laxity, dehydration, etc).

I just feel I have so many symtoms that are progressing so fast that I don't have chance at any sort of recovery since any Dr I've seen cannot figure out what's going on. Most are even refusing to do tests at this point and think it's just anxiety. I mean I'm having musculoskeletal problems, digestion problems, neuro problems.....I feel I'm just going to physically crumble due to imbalanced hormones and malnutrition
 

Gondwanaland

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So you think taking protease inhibitors stimulates the ER?
The opposite! When I took proteases I felt that they activated my ERs.

I too took long-term Gamma E supplementation before trying methylation, plus progesterone replacement which was very detrimental on estrogen levels/receptors. Today I have a dehydrated intervertebral disk which causes me pain. At this point I am not sure if I should supplement with hyaluronic acid, glucosamine/chondroitin, glycine or what. I always stumble on the kidney stone issue.

I am going to study thoroughly that report I linked above to try to figure it out. I think it will take me several months to properly understand it.

Right now in addition to kidney issues, sulfite problems are hindering anything I can do, incl healthy eating.

If you choose to take proteases, start at a very low dose, since it can be painful to activate the receptors without enough estrogen to bind .
 

Tunguska

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@Tunguska yea I was supplementing vitamin D and a B complex and multivitamin for 5 years prior to taking the vitamin E and K2. I was still using the D while using the E and K2.

I've thought about maybe using pregnenolone or progesterone, but I really would like a complete hormonal panel done first so I can see where all my hormones stand from the same reading.....I'm thinking of getting a urine hormonal metabolites test from Dutch or Genova.

The thing about finasteride is many users have had long lasting effects.....it is said to possibly bring on epigenetic changes which cause low androgenic systems in men. Also gaba and allopregenolone are super important for anyone and god knows why they have drugs on the market that Inhibjt these things. What would be the best solutions to raise allopregenolone long term? Some people have tried using a supplement called 5aDHP but has shown minimal effects. I wish there was a way to test for resistance of certain hormones .

Thank you for the replies you're very knowledgeable about a lot of this.
Thanks but lots of what I wrote was basics and guesses from your descriptions. I had an inkling you'd already covered some of it.

5-alpha-DHP is the most effective temporary solution for raising allopregnanolone available. Most drugs miss the point and do it slightly and slowly (e.g. SSRIs). It has to be raised in bolus doses such as (example) 15mg at once, and low dose caffeine enhances it. A bunch of guys on another forum have tried it for finasteride specifically. I take it personally and started taking it more often now (I didn't take finasteride but I got a long course of accutane, and read the finasteride stuff weekly, and most metabolic diseases have allopregnanolone compromised anyway). It's not a cure for PFS, at least nobody has been using it for long enough to know, but for brain symptoms related to allo deficiency nothing matches it.

Pregnenolone and progesterone (and DHEA - even less predictable) will be a crapshoot no matter your test results and even symptoms, because they're precursors and not that well understood. The downstream ones are more predictable. It's almost subjective at this point in time, some people would look at your symptoms and think they're a reason to avoid progesterone, others the opposite. It's just not that well understood. The "safest" way is just to get dietary cholesterol (like eggs if tolerated) and vitamin A.

There isn't that much else I can suggest. I've largely had at different times joint/tendon/ligament/etc problems as you describe, even the spine thing (a different occurrence unrelated to the Vitamin K2). Unless you took a fluoroquinolone you didn't mention, I think your crash joint problems are temporary. Synovial fluid probably got wrecked and pain is intensified by hormone disturbances, but real damage in most conditions is from chronic sustained exposure.

The only things I didn't mention are nitric oxide and lysine. NO is big for joint problems but it's not appropriate so short after onset (it would be foolish to try to increase it unless you were also taking antioxidants and ROS scavengers). Lysine is anecdotally and I personally tried really good to tighten skin and joints, but it's not really documented. It also can oppose NO which can be good or bad. For some reason the amino acid HCl powder works better than the lysine in proteins like whey.

No matter what the cause was of the joints/tendons/ligaments/etc going awry, time will help it. The depression and brain fog you'll find help for.
 
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adreno

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Ugh knowing you're going to die sucks and there's nothing I can do to prevent it.
I would recommend that you seek help for depression. It doesn't seem realistic to me that you are going to die from the symptoms you describe. I would try to get those dark thoughts under control first, and then you can adress your other issues in a more constructive manner.
 

Konflict

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I would recommend that you seek help for depression. It doesn't seem realistic to me that you are going to die from the symptoms you describe. I would try to get those dark thoughts under control first, and then you can adress your other issues in a more constructive manner.
Explain to me how spinal degeneration is normal? @adreno in 10'weeks I went from normal healthy 30'year old male to bed ridden most of the day. All the tendons in my wrists, ankles, are in pain and continue to get weaker. I can sprain my wrist if i pick up a full gallon of milk. My chest bone pops several times, most likely due to lack of collagen synthesis. My two upper front teeth are loose. When I rub my eyes they make snapping noises duento totalmbody dehydration....again low estrogen prevents your body from holding water and regulating sodium look it up.

I know I have depression, but it's brought on by these symptoms. What I feeling is real....not just popping sounds in the joints like a normal person, but weak painful snaps in ALL joint locations. I have ligament laxity as well and that is only due to 2 things, Ehlors Danlos Syndrome or low estrogen/progesterone. I posted proof of how the supplements I took work on the estrogen receptor. Yes it sounds unlucky....but I'm sure you've been to a Dr and they didn't believe you and your CFS.

If what I have Is a version of connective tissue disorder, or collagen deficiency syndrome, or even a hormonal pathway shutdown.....yea bro you can die from those. Can cause stroke, heart attack, seizure, gastroenteritis
 
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Bdeep86

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For 10 weeks now since I've crashed I've been having debilitating symptoms that have kept me totally housebound. No doctors know what's going on or how to treat this, most just think it's in my head and I'm having a hard time having them give me any more tests. I'm a 30 year old male.

I was taking vitamin E mixed tocopherols as well as an active B complex with folate, p5p and methylcobalimin. Had a minor crash but bounced back. 3 weeks later I started using vitamin K2 mk7 and 2 weeks after that I had a major crash causing severe physical symptoms.....the worst of which is connective tissue deterioration in my joints, tendons, ligaments and nerves. It's causing me joint hypermobility when before my joints were stiff as a kadaver. My spine is as loose as a pregnant woman's and even my jaw and chest bone are cracking. This is all accompanied with pain. I'm also experiencing IBS/constipation, excessive urination, dry eyes and mouth, severe insomnia, brain fog, depression, slow growing hair and nails.

Now I know many of you will say it's the active B vitamins that did this, but I crashed 5 weeks after discontinued use of them...I believe the new issue is hormonal receptor insensitivity, but I cannot prove this. I say this because I have low estrogen symptoms system wide. Most the above symptoms are due to low E, and I also have many androgenic symptoms such as increased strong body odor, lots of new acne, fat loss, skin tightening, disappeared gyno.

I can hardly hold up my iPad and talk without the tendons in my hands burning, and when I straighten my elbows the weakly crack several times. This has rapidly spread in just 10 weeks and I feel alone in all this....that I'll never find a cure or help for this. I really don't know what to do. All the tests I've done show "normal" hormonal levels but are all on the lower end (down regulation). Lyme and lupus tests were negaitive. In the past I have taken finasteride which can cause gaba AR dysfunction, but no doctors believe finasteride can cause long Term side effects (big pharma telling them most likely).

I believe I have a sudden onset of osteoarthritis as the connective joints in my back are corroding, I now have pinched nerves in my back but I have done ZERO strenuous bending nor lifting at all.....most of my day is spent on the couch or in bed. My back is in such pain I can hardly move, just sitting is uncomfortable and have to fidget every minute or so just to lower the pain, I can't sleep a wink even with benzos or ambiens....I'm at my ends wit. I really don't think I can go on living like this without a doctor looking into anything or trying to treat this. I'm really on the verge of doing something i don't want to do, but I'm in total pain from the connective tissue weakness. Just now I took a deep breath and my back cracked 3 times....I don't think I can take anymore.
Have you tried supplementing with Magnesium?
 

Tunguska

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a full gallon of milk
Do you drink a lot? From experience, regular cow's milk actively worsened all my tendon and joint issues of every cause and time, and it probably goes beyond just skewing mineral balance toward calcium (which is important and people lower it too much, but the balance is more). I saw you linked the ray peat forum, and although they have some excellent and world-unique information, several of their suggestions are detrimental to tendon/joint issues to the worst degree - they actively seek collagen synthesis inhibitors for example. The suggestions to use lysine, glycine, normalize blood sugar, progesterone, are all good, but everything else is potentially harmful. I'll refrain from commenting on the other things but I can tell you if it was really that bleak I wouldn't be here.
 

Konflict

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@Tunguska no just some milk here and there.....was just using that as an example. Just holding my tablet is hurting my wrists and need to place my fingers on the side to stabilize it. Yea they're more into weight lifting there but was just showing the fact of what vitamin E does to further advocate my theory.

@Bdeep86 i used to take 500mg a night but have stopped since last month. Right now I'm currently taking nothing in terms of supplements.

On a side note I went to the doctor today, he gave me a referral to the UCSF genetics department in San Francisco. Said he never seen hypermobile joints in a male without estrogen issues or Ehlors Danlos. I'm pretty scared honestly as he said he never seen this before