Coq10 And Nac Supplementation

[Claire]

Is anyone on this forum taking either NAC or CoQ10 supplements? If so, I would love to hear comments. Also, has anyone noticed a difference between one Brand and another?

I am new here and was so pleased when I got such immediate responses to my first post.

Thank you again.

Claire

[KaitiUSA]

I used to use CoQ10 supplements. At first they did well for me then they started causing some problems(I think my body had enough of it at that point or something).The kind I took was gluten free too(I took them for a little bit post diagnosis.

[emeraldskies]

I was taking CoQ10 for awhile pre-diagnosis. It helped lessen teeth pain, gum swelling, and plaque by quite a bit. I'm just out of the habit of taking vitamins, or I'd continue to take it. I don't remember what brand I had, but I bet it wasn't gluten-free.

[Claire]

I was taking CoQ10 for awhile pre-diagnosis.  It helped lessen teeth pain, gum swelling, and plaque by quite a bit.  I'm just out of the habit of taking vitamins, or I'd continue to take it.  I don't remember what brand I had, but I bet it wasn't gluten-free.

<{POST_SNAPBACK}>

I am new here so I may not be doing this correctly. Wasn't sure why hitting the reply button on your message threw in the text directly above.

Thank you for your reply. I noticed that your 'bio' mentioned gait and limb ataxia. Have you had an MRI? I am a retired Rehabilitation Therapist and think if you haven't seen a neurologist and had an MRI it would be wise to do that. I have only half a diagnosis at this point - spinocerebellar ataxia - gait and balance with moderate essential tremors both arms. I am doctored out - and most of them are as dumb as a box of rocks. I believe that celiac or non-celiac gluten sensitivity will be the final say but I have a long way to go yet. Blood testing can only produce a false negative as I have been on a controlled gluten diet (not free) for 15 years. CoQ10 and NAC both recommended for ataxias.

[emeraldskies]

If you want to quote someone, hitting "reply" under their post will accomplish this (as long as you haven't deselected the "quote" button). "Add reply" below all of the posts will add your comment with no quotes and this is easier. I definitely need more studies into my neurological issues. I have had an MRI in the ER (but they were looking for other things at the time). I'm self diagnosing based on my neurological background (that's what I was studying in medical school before my poor health got in the way). I don't have a nystagmus and increased reflexes or sensory, hearing, or visual problems. It mainly involves my gait and limb movements, tremor and dysarthria. I am doctored out as well, but I still need to go to more for a few things, unfortunately. From now on, I plan on only going to see them if they have something I need (tests, equipment, or prescriptions). I am going to do all of the research into my health myself and will try to order as many tests as I am able to without a doctor. Do you need an official diagnosis at all? I only will need one if they won't take the EnteroLab results seriously, but I hate to go back on the diet for the tests to be accurate. If you need a diagnosis, you could try getting tested at EnteroLab, since you have been ingesting a little bit of gluten (if I'm understanding you correctly). How much do you think you take in daily? What does NAC stand for?

[Claire]

Thanks for the 'button' tips. I am computer literate but not forum literate. This is my first.

I had a message almost finished here for you and went online to search for something for you. When I came back the half done message had disappeared. What did I do wrong?

If you were studying in this field then you already know that ataxia is serious business. The more you know about the disorder and your own personal presentation of it the better off you are. This is especially true for those of us who will be proactive in our own behalf - not leaving to the doctors.

An emergency room MRI probably would not be well interpreted. Consider that I am now with my third neurologist - the first two did not properly read the MRI. This was probably because though they are neurologists there are specialists within that field and they know exactly what they are looking for and these guys didn't . My current guy is a 'motion specialist' - deals only with motion disorders.

As I said before, I am only half way diagnosed. Blood test for celiac probably a false negative due to a controlled gluten diet (not free) for 15 years. The diagnoses of spinocerebellar ataxia is nebulous until it is determined whether it is genetic in origin or whether it is secondary to celiac disease - also genetic in origin. It can make a considerable difference which way it is.

Though ataxias are not really treatable or reversible, they can be modified, their progress slowed down if not halted altogether.

Occupational and Physical Therapy can help a lot. An absolute gluten free, dairy free diet is necessary. The two supplements I mentioned CoQ10 and NAC are highly recommended for ataxia patients - even those with MS. NAc is N-Acetylcysteine - a powerful antioxidant. Read about it at Open Original Shared Link Take care. Thanks for your reply. Claire

[emeraldskies]

I never doubted your computer literacy--I know plenty who are computer illiterate and they would have difficulty finding this place at all. I don't know what happened exactly with your erased message. I tend to select all and copy the message repeatedly (sometimes pasting it into another application) while I'm doing anything in a web-based form because it's too easy to lose all your work.

I've certainly taken the route of being proactive with my health for many reasons. I bet they don't have many neurologists on site in the ER, so there probably is a lack of specialists. In fact, I think the main ER doctor might have evaluated it herself. Can you get those gene tests done somehow?

I looked further into NAC and CoQ10. I see what you are referring to, in that it (NAC) can halt the progression but not reverse the disease. They are both helpful, but my earlier impression of CoQ10 was based on what most believe is common and important, such as prevention of cancer or Alzheimer's. So, there is a lot more to it than I thought. One of the abstracts recommends taking 400 mg of CoQ10 daily along with 2100 IU of Vitamin E to help Friedrich's. I am definitely going to get both NAC and CoQ10 and take them regularly. Thanks for pointing out their connection to ataxia, or I never would have considered this!

Supplements that do not contain wheat, gluten, yeast, dairy, or soy:

Open Original Shared Link

Open Original Shared Link

[Claire]

Sounds to me like this forum experience is going to be a challenge.

Glad you are going to go with the CoQ10 and NAC. After all, what is the worst thing that can happen? It may help. Anything that has even a fighting chance of slowing down or stopping the progression of cerebellar degeneration is worth trying. This isabout staying mobile.

Don't miss my reference to dairy products. The molecular structure of casein (the dairy protein) is essentially the same as the wheat protein (gluten). This is probably why most celiacs are, sooner or later, diagnosed as lactose intolerant. Lactose is the enzyme and most likely not really the cause - rather the protein.

The gene test for celiac is done with one of the Enterlab tests - one test has it, the other doesn't, Gene testing for genetic ataxia is not done there. Mine will be done at NIH in Maryland. That requires a referral from a neurologist - mine is coming from my most recent doctor at George Washington University Hospital in DC.

Where do you live (state at least)? I will see what I can find. Claire

[emeraldskies]

I'm glad to have the ability to do something about the progression. I am actually casein free and stopped eating all dairy products when I quit having gluten. I had IgA antibodies to casein. I mentioned being casein free (Gluten-free Casein-free) in my sig, but I just changed it so it would be more clear. I react to casein in the same way I do to gluten. I'd read about its similar structure to gluten while trying to find out why I had such problems with it.

Good luck with your test. I hope you can get to the bottom of this soon. I live in Colorado. With your background, do you have any added knowledge about bone disorders or about ways to help muscle atrophy? You've had a lot of good information.

[Claire]

Glad to hear you are doing so much investigation into all this. The info is, as they say. 'out there' it just takes some digging and the ability to connect the dots. Sounds like you are doing both.

I think many celiacs do not know the gluten/casein connection. They are lucky if they are tested for casein but many are not.

Do you have a good family doctor? I have to find a new one. Mine is definitely a challenged individual - just fell off a turnip truck I think!

I am real busy tonight but will get to the question in your last paragraph just as soon as I can. Claire

[emeraldskies]

It's in my personality to want to make connections to the bigger picture and to gain knowledge. I'm even more driven to get to the bottom of this. I can either give up or get back on my feet. Those are my only two real choices right now.

I was lucky that I was tested or it would have taken me awhile to discover the casein problem. I still think I would be wanting to test it but it would have never happened yet. That's how a lot of things have been working out. I'm trying to get a bunch of tests done later this week. Have you heard of Fanconi's syndrome? I think there's a good chance I could have this. I'm getting a urinalysis done, among other things (testing for anemia and diabetes, nutrient levels, kidney and liver function, cholesterol levels, thyroid hormone levels, and food allergies. I hope I get some answers).

I don't have a doctor at all currently. All they've done is put roadblocks in my path and have refused to test me or even consider why I am there, so I'm not going back until I know the doctor is good or my health is better, one of the two. Until then, I'm doing what I can to help myself.

Thanks, Claire, there's no rush. Take care.

[Claire]

I am a researcher at heart so all this is a challenge to me. So far I am beating the doctors at their own game. I find they all get locked in on a diagnosis and don't look beyond it. Often the diagnosis is for something that itself can be only a symptom of something else - i.e. the ataxias.

Are you able to be up and about or is this limiting you a great deal?

I know about Fanconi's. It is not common. I look at many tests as a process of elimination not necessarily looking for something that I think I have. I am having a test like that tomorrow - just to rule out a possibility for some symptoms not readily explained by current diagnosis.

In spite of their shortcomings, I think it is important to have a 'family' doctor because, regardless of precise diagnosis (in my case) there is always a possibily of needing a perscription, a referral - things like that. Without that contact, ER is all you have and they will limit their investigation unless there is a doctor to order up what is needed. I had a blackout last January - cause will always be unknown but I did take advantage of family doctor to order specific tests when I went to ER. That blackout, fall and subsequent lump on my head is what finally got me some attention. They started looking for seizures so neurologists and all the EEG, EKG, heart monitor, MRI stuff followed. I should have knocked my head sooner.

Today I am not enjoying the 'phantom smell' that has been part of my medical picture for many years. It is infrequent - sometimes months - even years apart. A 'phantom smell' otherwise known as an olfactory hallucination is often a sign of partial seizure. It is weird. I must post a question to see if I am alone here with this.

I will write again later. Good luck with the tests. Claire

[emeraldskies]

I feel the same. That would be my ideal career, research, but I'm not fond of schools and there seem to be a lot of roadblocks in the way of certain research topics. The main way I am different from most doctors I have encountered is that they often get caught up in treating symptoms. I wouldn't mind neglecting symptoms if they can eventually be lessened or removed by treating the source.

The neurological problems are not really that limiting. I accommodated early and don't miss the things I am incapable of doing (such as ice skating, dancing, etc). The fatigue is much worse, and that is what keeps me housebound most of the time. How are things for you?

I tend to get more caught up in finding disorders when I lack data. If I can't get the tests myself, I can't eliminate possibilities. Today, I got the blood draw, and I will be glad to get the results.

I agree with you. I do have a family doctor who will write refills for me if I contact him. I don't plan on going back to see him, though. I don't think I will be getting any more referrals out of him either. It's sad that you had to fall to get help.

The phantom smell sounds like a seizure aura. Do you ever get seizures? Do you get other sensations (visual or auditory) at the same time? Do you get occasional blackouts (other than during your fall)? Hopefully, the diet will help this. Good luck.

[Claire]

Hello again. I got so busy that I didn't get to answer yesterday.

It seems that many 'diseases' are really symptoms and doctors don't look deeper than what is initially presented to them. That has been my problem for years. They couldn't treat what I had but they didn't want to go that extra mile to find out the why of it all.

Glad that you are not too limited. I am not too limited either but certainly am a danger to myself - gait and balance are poor - have really worsened this past year. Fatigue is overwhelming at times.

I am working on the process of elimination as well. I wanted to rule out a heart problem so I have had EKG, wore a monitor and this week had an echocardiogram. The results should come within a week.

The phantom smell is believed to be a partial seizure. Nothing obvious to anyone. I sometimes have a strange feeling in or around my head and infrequently there is a very mild nausea. I have had this for twenty years. One neurologist said I must have a brain tumor. I told him I would have been dead long ago if that were the case. The spells are infrequent and never get any worse. I still have it now (Day 4) so I just have to wait it out.

You asked for some help for bones etc. First of all, strange as it seems, be sure you are not getting too much calcium. If you get too much it overpowers the magnesium and without adequate magnesium you will lose bone. The best of all bone builders is weight bearing. I have this wonderful vest that my daughter and I share. It has multiple pockets and you put thin, flat weights in the pockets. You can go up to eight pounds or as little as half a pound. You can go walking with it or wear it around the house. I wear it whenever I am cleaning or doing something active. This is much better than ankle weights as it distributes the weight over the body and there is no joint strain.

You can buy weighted braclets for the wrists for arm exercises. This are great for anyone with tremors in the arms. The little extra weight stabilizes and makes it possible to do things you couldn't otherwise do. There are many other adaptive devices to help deal with limitations.

Another thing is not to stop doing something that you no longer do well. Do it anyway - more than you normally would. I walk a straight pattern line on the kitchen floor - like I was walking a tightrope. I can't do it well but I do it many times every day. Sometimes other parts of the brain that are not damaged will kick in and the movement will improve. You mustn't let neurons die!

Also - you need 1/2 tsp. of baking soda in the morning. This helps reduce body acidity. Acidity robs the bones. Eating meat robs the bones. Eat some but lean more toward fish and whatever other protein sources you can eat. Stay away from carbonated drinks. Bad for bones.

I sound bossy! But you did ask. These are all things I told patients in the rehab setting. The vest is something that came along later.

I probably will remember other things but right now it is late and I must end up.

Take care. Claire