I feel like giving up on life

[Konflict]

Here's a hair minerals test I did......anything that can be of relevance in relation to my symptoms? Possible hidden copper toxicity?

 

[adreno]

Here's a hair minerals test I did......anything that can be of relevance in relation to my symptoms? Possible hidden copper toxicity?

According to the test, your copper is low. Copper is extremely important for connective tissue health. It is necessary for collagen synthesis.

 

[Shoshana]

We do care about you,
and about your mother too.
I think she does need you to hold on, for as long as you are alive, it will help her.

 

[Konflict]

Thank you @Shoshana i can tell you are a really sweet and kind hearted person.

@adreno yes I've been reading a little on my imbalances. High hair zinc means your body isn't absorbing it correctly, which can lead to low copper. Also I read lithium levels under 0.005 can mean high Mercury. I think I will schedule an appointment with my naturopath and see if she can help me figure this out. I don't really want to start a chelation program by myself, and would be scared since it involves high levels of vitamin E and C which effect estrogen and progesterone (I still think this theory of desensitized Estrogen Receptors hold some water, as estrogen is needed for lithium).

 

[antherder]

Here's a hair minerals test I did......anything that can be of relevance in relation to my symptoms? Possible hidden copper toxicity?

I don't know anything about the oestrogen receptor thing, or how to interpret hair mineral tests, but re the copper, I'm glad you mentioned it as I did wonder if it may be relevant.

I do know that oestrogen and copper are supposedly synergists, and that as adreno said, copper is important re collagen. Copper can be implicated in bone issues too, but again, no idea re your situation.

Have you ever had your ceruloplasmin and serum copper tested? These tests might provide some useful information.

 

[Shoshana]

Very good idea, @Konflict to make appointment with the naturopath, to ask for help on that issue,
and other issues, as well.

Thank you for your kind words to me. Also noticed and appreciated. You still have kindness to offer others, which is another valuable part of you and your life, too.

 

[Hilary]

@Konflict @Shoshana
I hope so much there will be some change - however small - which will give you a little hope. When I was at my worst, I found it easier to cope once I adjusted to dealing only with one day at a time and not looking too far ahead which was too scary.

@Konflict - speaking as a mother, yes it's the worst thing to see a child suffer but for me that was outweighed by my desperation for her to keep fighting (daughter had a life threatening illness). I agree completely with @Shoshana - your mother will need you to hold on.

I wish I had more to offer but am thinking of you both x

 

[maybe some day]

Konflict, just giving out a radar ping. I read all your threads here. I must say we've all been there..to that dark hopeless abys of suicidal thoughts. How can one not?
First off remember you make a difference in eveyones lives. YOU ARE the strongest person you know. Needless death leaves a wake of incurable hurt to everyone that knows and loves you. Even if its one person or 50.
Looks like your from the bay area. I am too. This is more than a forum. We are a family. Everyone here has something to give, including you. Stay strong with us. We are here. Please.

 

[Tunguska]

The ceruloplasmin test is a good idea (don't rely on hair mineral alone). It needs copper, zinc, vitamin A, estrogen, and liver health to work correctly and so it's hard to get right, and potentially painful. The collagen basically needs all the minerals to work correctly, including trace ones like copper and manganese. But if you act too fast and just take tons of copper and manganese it can make pain and your problems worse because they can also increase collagen breakdown (MMP). In fact copper without ceruloplasmin is probably horrendous. The liver is supposed to absorb the dietary copper and spit it out as safely as ceruloplasmin but personal experience with joint problems alone tells me that's not a foolproof mechanism. The safest way to get vit A and copper is to eat small amounts of liver frequently even though it gets disgusting. I can again echo comments about how hard this is, but at the same time, some of your experience is probably unique as were mine so I know there are parts others even on a forum of very sick people that few people can understand since that's the inherent limitation of the human experience, so sometimes you're forced to find hope in different ways.

Edit: Another thing that slipped my mind - are you still taking ibuprofen? It has known deleterious effects in tendon healing, and it is one of the worst NSAIDs in terms of MMP activity effects.

 

[Konflict]

Worst day by far.....I'm going to have to start wearing neck and back braces, I can't sit on a couch anymore my spine won't allow me to.

I feel like whatever I took gave me brain damage.....if it wasn't my theory on the estrogen receptor that is ruining me, then the methylated B vitamins killed me. Seems like I altered genes and now my body is incapable of healing. Damaged mitochondria, depletion of neuro steroids and chemicals, imbalanced hormones and electrolytes....idk how much more I can take of this, no doctors give a shit and keep telling me my tests are normal. Just because levels are in a certain range doesnt mean ur body is using them correctly.

I doubt doctors would even treat me when ALL my connective tissue disintegrates and blood levels are normal, they'll just send me home to die they probably wouldn't even admit me into a hospital bed. I don't want to live this way.

 

[undiagnosed]

Here's a hair minerals test I did......anything that can be of relevance in relation to my symptoms? Possible hidden copper toxicity?

Just quickly glanced through the results and it appears that the most significant results in descending order are cobalt, zinc, copper, and lithium. For significance, I assumed a normally distributed 95% reference range and calculated the probability of the result being above/below that in the reference distribution with this tool. I saw this thread discussing high cobalt and a possible link with low lithium as is the case with your results. You may want to look into that. Also, the Zn/Cu result was an order of magnitude higher than the upper limit as well so you may want to investigate that.

 

[Konflict]

The high cobalt may be a result of my body not being able to use the b12, as I've also been tested for high b12 before. I have been told I meet the "counting rules" for Mercury toxicity, but I don't have dental amalgams or eat much seafood, so idk. Maybe when I overmethylated on methyl Bs I released a bunch of toxins into my blood ....idk. Copper is directly associated with collagen synthesis, and on a hair test high zinc means it's low in the blood, which could result in "hidden copper toxicity"...but idk what to believe and reals or false. I just know the human body shouldn't develop severe osteoarthritis in the matter of months. My middle spine is severely bad.

 

[undiagnosed]

The high cobalt may be a result of my body not being able to use the b12, as I've also been tested for high b12 before. I have been told I meet the "counting rules" for Mercury toxicity, but I don't have dental amalgams or eat much seafood, so idk. Maybe when I overmethylated on methyl Bs I released a bunch of toxins into my blood ....idk. Copper is directly associated with collagen synthesis, and on a hair test high zinc means it's low in the blood, which could result in "hidden copper toxicity"...but idk what to believe and reals or false. I just know the human body shouldn't develop severe osteoarthritis in the matter of months. My middle spine is severely bad.

When was your last b12 measurement? Have you done anything to try and lower it?

 

[Konflict]

@undiagnosed In December after I overmethylated and before I crashed....idk what to do honestly, besides not taking them which I been stopped after I felt weird taking the Methyl B vitamins.

 

[antherder]

@Konflict, If you get your ceruloplasmin and serum copper checked, this might give a better indication of whether you have a copper toxicity problem. If your doctor won't do the tests you can ask to pay for them. They aren't usually that expensive.

If they indicate you have either a copper deficiency or a copper toxicity problem, it can be treated.

Please don't give up. I know it's hard to keep going when you are so ill, but even if the geneticist you are waiting to see doesn't think he can help you, he might know someone who can.

If you get the copper tests done while you are waiting, and if the results are abnormal, the geneticist should suggest further investigation. There is a genetic copper disorder -Wilson's Disease, and premature osteoarthritis is a symptom. WD is actually treatable too.

Did you see your naturopath? Have you ever had iron deficiency?

 

[Gondwanaland]

You can ask your ND to take a look at lysine

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3499978/
Essays Biochem. Author manuscript; available in PMC 2012 Nov 16.

Published in final edited form as:
Essays Biochem. 2012; 52: 113–133.
doi: 10.1042/bse0520113
PMCID: PMC3499978
NIHMSID: NIHMS417297
Lysine post-translational modifications of collagen
Mitsuo Yamauchi1 and Marnisa Sricholpech
NC Oral Health Institute, University of North Carolina at Chapel Hill, NC 27599, U.S.A.
1To whom correspondence should be addressed (ude.cnu.yrtsitned@mhcuamay).
Author information ▼ Copyright and License information ►

The publisher's final edited version of this article is available at Essays Biochem
See other articles in PMC that cite the published article.

Abstract
Type I collagen is the most abundant structural protein in vertebrates. It is a heterotrimeric molecule composed of two α1 chains and one α2 chain, forming a long uninterrupted triple helical structure with short non-triple helical telopeptides at both the N- and C-termini. During biosynthesis, collagen acquires a number of post-translational modifications, including lysine modifications, that are critical to the structure and biological functions of this protein. Lysine modifications of collagen are highly complicated sequential processes catalysed by several groups of enzymes leading to the final step of biosynthesis, covalent intermolecular cross-linking. In the cell, specific lysine residues are hydroxylated to form hydroxylysine. Then specific hydroxylysine residues located in the helical domain of the molecule are glycosylated by the addition of galactose or glucose-galactose. Outside the cell, lysine and hydroxylysine residues in the N- and C-telopeptides can be oxidatively deaminated to produce reactive aldehydes that undergo a series of non-enzymatic condensation reactions to form covalent intra- and inter-molecular cross-links. Owing to the recent advances in molecular and cellular biology, and analytical technologies, the biological significance and molecular mechanisms of these modifications have been gradually elucidated. This chapter provides an overview on these enzymatic lysine modifications and subsequent cross-linking.

As a supplement, lysine might have side-effects

LYSINE SIDE EFFECTS & SAFETY
Lysine is POSSIBLY SAFE for most people when taken by mouth at recommended doses for up to one year, or when applied to the skin short-term. It can cause side effects such as stomach pain and diarrhea.

Special Precautions & Warnings:
Pregnancy and breast-feeding: There is not enough reliable information about the safety of taking lysine if you are pregnant or breast feeding. Stay on the safe side and avoid use.

Kidney disease: There is one report of kidney disease linked with taking lysine supplements. If you have a kidney disease, check with your healthcare provider before taking lysine.

Osteoporosis: Using Lysine with calcium supplements might increase calcium absorption.

Intolerance to lysinuric protein: Lysine supplementation might cause diarrhea and stomach cramps in children who are intolerant to lysinuric protein.

How safe is it?
Contraindications
Lysine supplementation should not be used in patients with too much lysine in the blood or urine. Patients with liver and kidney impairment should avoid supplementation with lysine. If use is warranted, patients should consult a health care provider.
...
Interactions
Use of calcium supplements with lysine may be associated with increased absorption and reduced elimination of calcium. Aminoglycoside toxicity may be enhanced in patients taking lysine supplementation.

Side Effects
GI adverse reactions, such as diarrhea, nausea, and abdominal pain, have been reported with lysine ingestion. A case report described the development of the kidney disorders Fanconi syndrome and tubulointerstitial nephritis associated with lysine supplementation taken over a 5-year period.

Toxicities
High oral doses of lysine are likely to be safe. Doses of 100 mg/kg given to 2 patients with Parkinson disease were not associated with adverse effects.

Many people taking B vitamins report flu-like symptoms:

L-lysine levels
Just like with anything that we introduce to our body via artificial ways, we can have too much or too little of the L-lysine amino acid.

If you have a very low level of L-lysine, you will feel somewhat like you were having the flu. This means that the symptoms will be nausea, vomiting, feeling tired all the time and dizzy for no apparent reason. In the same way, a dangerously low level of L-lysine may manifest itself through the inability of getting pregnant, if you are a woman. Whatever the case may be, if you experience any of these symptoms, you need to check with your doctor before starting an L-lysine treatment.

L-lysine can be taken in excess as well. This happens when you take too much of it, usually via supplements or other drugs and your body doesn’t have the ability or time to process it all. It manifests itself through nausea, vomiting, diarrhea and cramps in the abdominal region. The worst side effect of overdosing on L-lysine is developing gallstones, which you will then have to see a doctor about, in order to pass them. This is one of the top reasons why this amino acid should be introduced to the body through natural ways such as food, rather than through pills.

As far as dosage goes, it depends on the reason why you are taking it. However, on average, for a healthy adult, a normal dose is 12 mg/kg/day. This means that a 150 pound adult, the dose will be 800 mg daily. The dosage will be dramatically increased if you are taking it to cure a problem such as herpes, for example. In this case, it might go up to 2000 or even 3000 mg daily. L-lysine 1000 mg benefits, as an average, are usually the best way to go.



The most important thing to remember is to always consult your physician before starting an L-lysine treatment and to understand that it will not cure your diseases, but rather ease them greatly, as well as the fact that it will aid your general well-being to a great extent. Also, the benefits of taking lysine are many, but it’s important to do some research before taking it.

 

[Victronix]

Wow, thanks so much for putting this out there and putting your video here on the forum -- I had no idea about the possible dangers of saw palmetto or the hair loss drugs. Saw Palmetto used to be in Dr Fuhrman's men's multivitamin, but I see it's been removed from them now, and totally wiped from the website. It's so important to keep the youtube videos out there going about this kind of thing.

I hope you'll continue to post about your experiences here. I'm in the Bay Area also, don't have ME either, but have many vitamin deficiencies and hormone issues and am only semi-functional. I was actually just considering try to find someone to see at the Oscher Center, which is how I ended up seeing your post . . . thanks.

Just reading your first post reminds me of what happened to me after stopping methyl folate - my estrogen and testosterone levels crashed -- it took months for me to research, sort through it, find a doctor who took my insurance and wasn't an "its all in your head" doctor, and then get started on HRT, which was a lifesaver (once I got over my extreme reaction to taking estrogen) but my sense was that the mfolate was propping up my hormones and then taking it away crashed them all at once. That's just a GUESS at this point, but that was what it felt like because it came on so suddenly and I was literally unable to walk without such muscle and joint pain. I was just turning 50, so it made sense with peri-menopause, etc., but I think that the mfolate did something. My husband was also taking it and he reported enough concerns (and he's taken everything) that he thinks there is something actually wrong with it.

We both take methyl B-12 and continue to and have never had any issues with that.

I keep thinking about your immune theory and the flu benefits. It's impressive that you have that theory. There is a doctor studying a prevalent immune response to folate in children with autism, that I looked up once, and I wonder if you could interest someone like that in your theory. His research is here: https://www.ncbi.nlm.nih.gov/pubmed/?term=Quadros folate (Edward V. Quadros). Because of the responses that some people were having to methyl folate on here, some were wondering if it were actually an auto immune response.

So sorry to hear about your current state with your joints. Women's bodies somehow adapt to the gradual loss of estrogen, but it takes years. It's a bizarre thing to me (in the midst of being propped up on HRT) how it happens, but somehow it does. I know that probably offers little consolation given your situation, but you never know.

 

[Konflict]

@Victronix No problem.

Well I'm probably going to die from this, very bad osteoarthritis in 11 weeks since crash. Probably will lead to seizers and stomach failure. Super depressed....I feel I have nothing to live for and ruined mine and my moms lives

 

[Konflict]

I seems like I'm "floxed" although I didn't take cipro.....can you get floxed from overmethylating?

My ND recommended an infrared sauna, but I feel I'm a lost cause and nothing will fix me. She thinks this is all overmethylating but I didn't crash until 5 months after stopping the methylated Bs.

 

[Konflict]

So if I silenced a gene via methylation, can I even change it back? Ugh I feel like dying I can't take this anymore