NeuroTalk Support Groups

NeuroTalk Support Groups (https://www.neurotalk.org/)
-   PN Tips, Resources, Supplements & Other Treatments (https://www.neurotalk.org/pn-tips-resources-supplements-and-other-treatments/)
-   -   ~~SUPPLEMENTS~~~ for Peripheral Neuropathy: (https://www.neurotalk.org/pn-tips-resources-supplements-and-other-treatments/121683-supplements-peripheral-neuropathy.html)

kwinkler 01-08-2011 07:47 PM

Dosing Schedule
 
I have experienced symptoms of peripheral neuropathy for the past two and a half years. A biopsy recently showed that it is a non-length dependent peripheral neuropathy. I have not had any other positive tests, except a mildly high B6 level (low to mid 40s), which was well after a year of symptoms and probably related to a B-complex vitamin I was taking back then. It was slowly coming down on the last set of blood work. I am currently taking:

B12 (methylcobalamine): 5000 mcg
folate (methylfolate): 1000 mcg
D3: 2000 IU
CoQ10: 100 mg
curcumin: 500 mg
biotin: 1 mg
acetyl-l-carnitine: 750 mg
Mg (chelate): 66% RDA
B1 (benfotiamine): 300 mg
vit C (Ester C): 500 mg
r-lipoic acid: 100 mg
omega 3: EPA 650 mg and DHA 500 mg

astaxanthin: 4 mg
vit E: 400 IU
B2 (riboflavin): ?
B3 (niacin): ?

I have dosing questions on the last 4. I am not currently taking the B2 and B3, but am curious. The first group I gathered dosing information from here. Thanks. My main question is a dosing schedule. Other than B12 on an empty stomach and to stay NPO for about an hour after, I have been unable to find any additional information. Are some better to take in the AM or PM? Are there ones that I should take together? Are there ones that I need to separate? Is there anything I am not taking that you would recommend?

Sorry about the long post and I look forward to any input.

Thanks

Nervous 01-08-2011 08:14 PM

What is "NPO"?

kwinkler 01-08-2011 09:45 PM

Npo
 
latin (nil per os): nothing by mouth

It's a commonly used medical abbreviation.

mrsD 01-09-2011 05:31 AM

B2 is riboflavin and essential to converting B6 to its active form called pyridoxal, in the body.

You could just take a multivit with B's in it, and that may be enough.

Centrum senior or a generic of it is good, because it has trace minerals and NO iron. There will be B3 in it. (Niacin is also made in the body from tryptophan).

You will want to take nicotinamine (most common form in vitamin mixtures), because niacin itself causes flushing and similar burning the resembles some PN symptoms.

Your list is very complete, and you should see improvements within 3 months or sooner.

If you do not...consider dietary changes to find any triggers there for your symptoms. Gluten, nightshade veggies, dairy, corn, etc. Gluten is the most common one.

kwinkler 01-09-2011 06:33 AM

Thanks. I'm try to avoid a B complex, due to the slightly high B6 levels. Is the RDA for B2 and B3 enough? Are there any others that I should take on an empty stomach? Are there certain ones to avoid taking together?

Thanks again.

mrsD 01-09-2011 08:19 AM

The basic truth about "high" B6 is that--

the levels that appear on lab reports were not originally done on people taking supplements. Lab ranges are only a statistical sample of what to expect. They are not cast in stone, and do not reflect many things. For example, there are lab studies showing Autistic patients with higher than ave B6 readings when NO vitamins are taken. (however maybe fortified foods contributed, but no one knows).

So modest elevations in serum B6 do not reflect much unless really really high or very very low... Like magnesium and other nutrients serum labs can be misinterpreted or given weight when they shouldn't.

It takes really high B6 to cause any neurological symptoms.

And yes, a multivit may be enough for you and most people.

kate525 01-19-2011 02:42 PM

New and VERY confused!
 
Hello- I am new to the group and have been trying desperately to find the thread in the stickies that lists the supplement/vitamin protocol that's recommended by many(as I've gathered from reading posts). I have found a tremendous amount on B12- which was stickie #2, but I cant seem to find the list. I'm sorry to seem so lost but..I am!!

I was diagnosed with lyme disease back in 1999 but think I've probably had it for a lot longer. In what I thought was the beginning, I would get terrible burning skin, mainly in my arms and legs. That fell away but I then had tingly hands and feet off and on for a year or so. Then all of my neuropathy type symptoms seemed to be gone(still had a TON of other things wrong). Then several years ago, I started having terrible achey/throbbing feet that brought me to tears. I was also getting some tingling in my legs and feet. I went and saw a top NYC neuro who did a biopsy and diagnosed me with small fiber neuropathy. I was on IVIG for 3 mos-which was hell- and though my symptoms didnt really improve much-my repeat biopsy showed major improvement(still don't get that one)!

Fast forward 4 years and in the spring of 2009 I woke up with such terrible burning feet. I still have this incredible pain 22 months later and it's been traveling up my legs,spine, random hot spots, etc. I have always had burning in my thighs and stomach at night but was always told it was a lyme symptom NOT neuropathy so I never thought it was the same-and honestly-am still not sure? Anyway, my feet have been burning ever since and I'm terrified at what seems to be a progression up my legs. I am on 3600 mg's of neurontin as of 12 days ago but have been on increasing neurontin for almost 2 years. The med will last about 60-90 days and then I have to increase again. This time around, it doesnt seem to be kicking in and giving me complete relief like it has in the past.

Because of this horrific symptom, I went on the attack against the lyme again. I have been aggressively treating it for almost two years and feel like things with the SFN are only getting worse as I mentioned.

I've been sick with lyme since I was 26 years old. Now, 12 years into the lyme, I have this second disease which is coming across as if it's even more harmful then the lyme(which has stolen a LOT of years from me). I'm in a state of panic and paralysis. The questions that race through my mind are terrifying...AND no DR will give me the answers!!!

I am on a lot of supplements and would be incredibly grateful if someone could point me to the list on this site for comparison...I thank you SO much for any time you could spare!!

Sincerely,
Katie

mrsD 01-19-2011 03:29 PM

Supplements for each person vary depending on what their problems are.

I suspect your Lyme treatments depleted certain nutrients and this may have led to your current problems.

Some antibiotics also CAUSE neuropathies...the fluoroquinolone family.

So if you post more details of what drugs you took or are still taking, I can look them up for you.
Most drug damage involves DNA and mitochondrial functions.

Nervous 01-21-2011 12:35 AM

Is anyone using velvet antler?

I am considering using it for improved strength, muscle recovery, energy (hopefully), and well-being.

mrsD 01-21-2011 10:15 AM

oh....

I researched this a while back. Those elk herds since then have been ravaged by the "wasting disease"...that deer are getting.

Because it is so similar to Mad Cow....I'd be worried about it.

http://www.liebertonline.com/doi/abs...ournalCode=act

kate525 01-21-2011 09:57 PM

Thank you for your reply, Mrs.D!

Oddly enough, at the time this burning started 2 years ago, I hadn't been on any antibiotics in over 3 years. Prior to that I had been on IV Rocephin, not of the fluro. family. I have only been on the cephlasporins, penicillans and cyclenes. I also take antimalarials. As i mentioned in my intial post, I had been experiencing some VERY intermittent tingling over the years but never, ever pain, until I that dreadful day in April 2009. My infectious disease doc argues that PN is quickly becoming one of the biggest symptoms in lyme disease, therefore, I have been treating very aggressively again but w/out any improvement of the PN in two years. Every time I break through the neurontin the pain is so out of this world, I can't believe it's still there and as bad(and as advanced). What now?!

Katie

mrsD 01-22-2011 08:36 AM

Okay, I will list the nutrients that some of your antibiotics may have disrupted.

Amoxicillin --- depletes

The B complex... B1, B2, B3, B6, B12

inositol
biotin
Vit K
Potassium

And kills the beneficial organisms in the bowel,
Bifido bacteria, and Lactobacillus

Doxycycline

Depletes the same as above,
and also:
Iron
Magnesium

Cephalosporins:

Same as Amoxicillin

It takes time for this all to happen, so you would not see effects at first, but eventually depending on your dietary habits, some things may become too low.

You need to get blood work for both B12 and Vit D3. These can be low ANYWAY in people with PN symptoms. Get your numbers and don't accept "normal", from your doctor, since interpretation is very poor with both of them. Our lab ranges in US do not flag really low levels, but call them normal.

I am unsure that the organism causing Lyme would be affected by any supplements you could take. We would have to know how it targets the nerves exactly.
Nerve damage comes from damage to the insulation around the axons, and also from damage to the cell body, nucleus and mitochondria.
Myelin damage may be helped with B12 (methylcobalamin is best) B6, and folate. There is an RX vitamin called Metanx that is made to target this problem. There are questions that the generic is identical in composition to the brand name, so brand is best. You can buy these ingredients separately OTC.
B6 is called P5P (NOW company makes a good one) and the folate is called methylfolate-- and made by Solgar (Metafolin).

Add to those some Omega-3 fatty acids like Fish oil, at least 3 a day, and you may encourage remyelination.
Magnesium is low in many people (who do not have PN) so taking a good magnesium supplement is advised too.

This is my magnesium thread:
http://neurotalk.psychcentral.com/thread1138.html

Vitamin D:
http://neurotalk.psychcentral.com/thread92116.html

Vitamin B12:
http://neurotalk.psychcentral.com/thread85103.html

Supplements for cell body damage, mito damage include:

Alpha lipoic acid ( r-lipoic is newer and I suggest it instead)

Acetyl Carnitine ( helps with chemo damage and AIDs drugs damage, so I suggest it for other drug damage too)

Biotin (works with the carnitine)
CoQ-10 (works with the carnitine + lipoic)

Benfotiamine (this is a fat soluble B1-- that is useful for people with errors in metabolism involving aldehyde and alcohols and which may be genetic too) This is also being used in diabetic
neuropathies now too. If you took metronidazole antibiotic, Benfotiamine would be a choice for you.

Low Vit D is causing many problems for chronic pain and immune issues. So fixing it and getting it up helps many people in many ways.

kate525 01-25-2011 02:00 PM

Hi Mrs. D...

Thank you for the lengthy reply and your time! I wrote a very detailed resonse several days ago but it's not here? Not sure what I did wrong so I will try to retype as best I can...

I am currently on:

b12 methyl. inj sub Q 1x a week
r lipoic
b1
b6
ala
coq10
fish oil
lcarnatine
probiotics
vd3 50,000 a week
glutathione
folate

I started this complete protocol a little over 2 weeks ago. i'm not certain your recommendation for the amount of B12 injections? How many do you suggest weekly?

I have met with 2 top nuero's in NYC and both stated the lyme disease is rapidly becoming more recognized as a reason for SFN. I can't remember exactly how the nerves are affected but I know the disease attacks every system in the body..cells, nerves, tissues, organs, etc. Naturally the question in the back of my mind is, if there is an underlying disease, will supplements help? My infectious disease doc feels the only way to get at the SFN is to aggressively treat the lyme but I'm not so certain. I've had lyme for at LEAST 12 years that Ive known of and in hindsight probably should have been more consistent in treatment(been on and off IV drugs 5 different times but not consistently- who knew!?). I have been extremely aggressive the past 2 years- since this pain in my feet started-and Ive seen ZERO improvement. In fact, it's begun to advance up my calves a bit. I just increased Neurontin to 3900 mgs and it's not cutting it.

This has been quite the battle and I'm truly not sure if I'm targeting the RIGHT thing here...

Any suggestion/advice would be greatly appreciated!! I thank you so much in advance for the time it may take to reply..

BTW, is it appropriate for me to reply here or should I PM you??

Kate

mrsD 01-26-2011 06:43 AM

I think, Kate, that you would get better and faster improvement with oral B12.... 5mg orally each morning on an empty stomach (no food for 1 hr).

There are recent studies showing oral works, as long as it is used correctly. It works for me! Others here have posted success too.

Injections only stay in the serum for 72 hrs. Oral provides B12 daily and is similar to eating it in food. Our bodies are tuned to that oral route. You will want to get methylcobalamin form, for best results. This is not expensive, and you can find it at iherb.com or Puritan's Pride. (I tested out the Puritan's form recently and my blood work showed it worked wonderfully).

I would add magnesium to your list. Either SlowMag or a good chelate (like glycinate). Magnesium is critical for getting fats metabolized properly, including your fish oil.

kate525 01-26-2011 09:38 AM

Thank you! I have Methyl B12 1000 (Jarrow) that I take once a day. In order to reach the amount suggested here, do you agree taking 5 of these is sufficient or should I look for something different? Are you on pain meds as well?

Katie

kate525 01-26-2011 10:08 AM

Ok, did the conversion..guess I'd need a whole lot if I did it this way :p!

So, Im searching for a 5 mg version...do you have a suggestion for purchase and do you recommend capsule or lozenge?

Thanks!

mrsD 01-26-2011 10:34 AM

The only pain meds I use are :
Tylenol
Aleve... I rotate these to reduce side effects...
And
tramadol for very bad nights.

I do use topical things, like Biofreeze more often. Salonpas patches, and sometimes Lidoderms.

If you are very low in B12... 5mg daily would be best for about 3 months, then have another test taken, and if you are high like I am you can reduce. If you are not really low in B12 but just want more, the 1mg should be enough. Be sure to take on an empty stomach, as food messes up the absorption orally.

In people with no intrinsic factor, the oral which is about 500 times stronger than food, will be passively absorbed in 1-10% amounts. The RDA for B12 is 2-4 micrograms, when intrinsic factor is working properly.

Puritan's just offered methyl B12, so I bought some and took for 3 months before my last test. I typically hover around 800 normally. With 5mg daily I tested out at 1999 (which I believe is the max the test can do).

kate525 01-26-2011 07:52 PM

Hi Mrs D.,

I just went through my records and found that my B12 is 550(prior to taking any B vitamins), and B1 plasma is 15. With levels like this, is it likely Vitamin B is not the culprit here? And if B is not the culprit, can it still help in healing?

Katie

mrsD 01-27-2011 09:31 AM

On my B12 thread, I have a copy and link to Dr. Snow's article.

This research article has changed the way doctors should view B12 issues in people.

http://neurotalk.psychcentral.com/post698522-70.html

He states in that article that some few people will test out at 400 or close to and still have neuro issues. He recommends taking the B12 anyway for those patients.

You know there is a transporter to the CNS that moves B12 from the serum to the brain and spinal cord. That could not be working properly. Also people tend to store B12 in the liver, so if that is overactive it would pull B12 out of the serum making it unavailable to other sites. So there may be factors what exist in some people that just require higher levels.

Dr. Snow states that B12 is so inexpensive and benign it is not sensible to withhold it when neurological symptoms are present.

I really don't think the sublingual is very efficient. You end up swallowing the dissolved B12 in your saliva. The B12 molecule is huge and not easily passed thru membranes.

So most are sublingual...I just chew them and swallow them.

But one to avoid is "extended release".

There is a new one coming which I expect to be more expensive.
If you find this please let us know about it:
http://findarticles.com/p/articles/m.../ai_n30959773/

I expected it here by now...

kate525 01-27-2011 10:40 AM

When my B12 was tested it was about 4 months after the neuropathy had started to turn to pain. In order to stop the neuropathy, i went on ridiculous amounts of antibiotics and remian on them today(oral VS IV now however). They may have prevented the neuropathy from healing if they soaked up the B12 I had. I am going to request another look and will stay on them as Dr. Snow mentions. I have other neuro problems as well so at this point, why not?!

I recently had heavy metals testing done(not sure how reliable the testing is) and I came back high for mercury, lead and gadolidium. The integrative doc I see naturally feels I should chelate (orally not with IV) and of course get all my mercury fillings out :eek:!! I have read that mercury can cause neuropathy so of course it peaks my interest but I was wondering if you've got an opinion on metals and/or if you have any valid articles to point my to?

Lastly, I'm preplexed over the neurontin. I understand I should never stop with out counsel from my doc but i doubt he would ever advise it since it's all he's got to offer(plus IVIG). I have such pain in my feet w/out it, I don't know how I could survive. When it's doing it's job, I feel nothing! Bear in mind I am still fighting a ton of other issues from the lyme so the relief is MORE then welcome. However- I HATE HATE HATE being on pain meds like this and know that my body prob can't tolerate going up much higher then I already am-3600. How do people like yourself survive the pain? Or, has your pain loevel decreased to where it's "tolerable?" I know you listed your meds but none of them are real big guns, w/ the exception of the ocassional Tramadol. In additon to the Neurontin Im on 150 of Trileptal and .05 of Ativan for sleep at night. If I were to come off and truly gage the pain(as of right now when I break thru the meds the pain is round the clock with no trigger-it just "is") are these meds the type one could get back on with the same efficacy?

Sorry for the long reply!

Kate

mrsD 01-27-2011 11:22 AM

My most severe pain was when I was hypothyroid.

I just have that "endurance" personality!

I only used pain opiates one day after my 15in long C-section, too. Opiates make me very depressed and sick feeling.

I also use high gauss magnets at times. But not every day.
http://neurotalk.psychcentral.com/sh...hlight=magnets
Magnets work best when placed over the offending nerve before it gets the the spine. I use the graphics mentioned on that thread to help with placement. Same idea as with Lidoderms.

I've been using d-ribose, to increase mitochondrial functions and it also helps me sleep better. This then translates to less pain.

But remember I have been on many supplements for a decade.
This helps too.

I believe the Vit D3 has been especially useful.

My PN is of the burning type, when active. I control it now by avoiding nightshade veggies and MSG which really trigger it.
Biofreeze really helps with burning.

Some people have food intolerances which make for more issues. So you may have to do an elimination diet to see if you are triggered by gluten, nightshade, citrus, or dairy.

kate525 01-27-2011 11:36 AM

Interesting! My docs "thought" I had Hoshimoto's because one test showed the antibodies but several done thereafter have been either borderline or w/in range so there's been no treatment. Thyroid issues can cause neuropathy?! I'm learning new things every day on here.

WOW, you are tough!! I have such a high pain tolerence for surgeries(2 csections as well w/ no follow up meds other then motrin), headaches, body aches, etc. but THIS is unlike anything i have experienced. Sometimes I contemplate getting off the meds to see if I could adjust- and then my husband says- WHY would you do that when you can get a couple more months pain free?! And of course, that makes sense too :) I am raising little girls ages 6 & 2with no fmaily around ..and well..they're girls, need I say more!:rolleyes: I need all the help I can get! :) Every time I break thru the neurontin, I go as long a sI can before increasing. This last time I made it 3 weeks but finally couldnt take it anymore and gave in. Since im unwilling to go higher, I will be learning to "adjust" in 2 months w/out choice anyway as I'll break through again.

Did you have any thoughts on the metals?

mrsD 01-27-2011 12:10 PM

If you tested high on the metals, I'd do the chelation.

It will remove beneficial things too...like copper and zinc, but most doctors will tell you to take supplements after.

Some things naturally chelate:
selenium is supposed to help remove mercury
(don't go over 200mcg/day for any length of time--- but if you are not getting selenium in you food, 100mcg a day may help)

And Alpha lipoic acid too.
This is an article about r-lipoic
http://www.advance-health.com/rlipoicacid.html

Nervous 03-17-2011 12:53 PM

The supplements aren't working for me this month. :confused: I am having my worst ever symptoms of pain and burning.

I took 2 mg of melatonin to help me sleep last night. Could that be making things worse?

mrsD 03-17-2011 05:46 PM

No I don't think melatonin can hurt.

But the shifting weather can! I've been sneezing up a storm today, and very tired... the wet leaves and mold are bothering me and the sudden barometric pressure shifts are disturbing.

I am going to have to restart my grapeseed extract now! ;)

We've had some friends around here complaining too. So whatever makes nonPN people miserable can make us miserable too on top of everything else! Just my opinion.

Nervous 03-20-2011 06:50 PM

d-Ribose
 
For several months, I have been taking 1 gram per day of d-ribose in the hope of improving my energy level and resolving some of my fatigue. Disappointingly, I had mild to no result at 1 gram per day.

Recently, mrsD posted a link to a fibromyalgia site that recommended 15 g per day of d-ribose ( http://www.fibroandfatigue.com/the-a...-d-ribose.html ). I was prepared to take 15g, but I found noticeable improvement, for the moment, with 10 g. This is a small miracle for me, since fatigue has prevented me from doing much of anything at all. The effect of the larger dose was immediate and I now have the energy to get through the day, go to work and exercise. Let's hope things continue along this line.

N.B. I found a note on webmd.com that recommended d-ribose doses as high as 60 g per day.

mrsD 03-21-2011 07:58 AM

I posted here that I started at 2.5grams a day and worked up to 10, which I didn't like, and then dropped down to 7.5grams which is where I stayed.

I don't feel comfortable in those high ranges--- the people who use it that way, commonly, are body builders who are putting on alot of muscle weight would would mean more muscle metabolism stress.

The link in my ribose thread contains a study, about whether ribose can cause elevated blood sugars. Since many here are possibly insulin resistant at least or prediabetic or impaired glucose tolerance and maybe some diabetic I don't feel comfortable giving advice in really high ranges without the research behind it to explain effects on blood glucose.

One gram a day, is not very much for this supplement. But over time it might still lead to some small improvements. Ribose is not common in our food chain.

When one purchases the d-ribose powder, (not capsules), it typically comes with a scoop. 10 grams/ teaspoonful. This supplement is meant to be taken by the gram.

Nervous 03-21-2011 10:47 AM

I see that I must make a correction to my post above.

I had been taking 5 grams per day with little or no result. Then, I upped the dose to 50 grams per day with very good result.

mrsD, I'll have to track down your d-ribose thread and review it again, and do more research on side effects of d-ribose. I don't have diabetes or blood sugar issues (yet), and I would hate to have to give up this supplement and lose its effects, as it has made all the difference for me.

Thanks, as usual, for your great information and circumspect advice!

mrsD 03-21-2011 11:18 AM

Well if 50 grams works for you, then maybe you really need it that high.

I don't feel comfortable with that high dose, because of that link, and also because high use of ribose may increase uric acid in the blood, and cause gout. This was mentioned in that link too, and also in this one:

http://chronicallyme.wordpress.com/2...make-you-sick/

Gout is very sneaky. In fact I think my ankle which has been bothering me alot for months may be gout, because of the reduced blood flow I have in it from the previous surgery.
My doctor agrees, and I have a slip for blood work, which I will take in next week to the hospital for testing.
You can have high levels of uric acid and no gout attacks, for a long time and boom... then you get one. So increasing uric acid in people with this tendency (some drugs like diuretics cause it too) is really not safe here either.

At the doses I used, I found a steady slow improvement with time. Perhaps taking more will give faster results, but once you are up there where you want to be, I'd consider slowing down on the ribose some, to a steady state lower maintenance amount. There are no studies on chronic use...but I suspect the systems get saturated over time, and the high amount may no longer be necessary. (unless you are building new muscle at a fast rate).

Keep in mind I don't have blood work on people here in front of me like a doctor would, to guide advice. I give conservative advice, and let the readers decide for themselves. That means it becomes YOUR responsibility to choose whether to take something and how much. Many people tolerate high doses of things that others can't. It is really impossible on the net to predict who is who.

I do think you understand that.

Nervous 03-21-2011 11:56 AM

I hesitate to say this, because it sounds a little hysterical, but d-ribose at 50 g has been a little miracle for me. I feel like, in a fews days' time, I have gone from 1% energy level to 80% energy level. Nonetheless, I'll have to study the subject more.

It sounds as though you are saying that there is, or might be, a difference between an initial, effective treatment dose (say, 50g) and a lower, maintenance dose (say, 7-10 g). Yes?

mrsD 03-21-2011 01:14 PM

Yes, that is how biological systems work. They are what is called in chemistry "rate limited", meaning that fixed ratios of things work, based on the chemical reactions ongoing. Enzymes are needed in biological systems to hook things up...and they are often in limited amounts. Once filled, no more can be put thru until those enzymes are empty again.

Once the system is going well, the ratios may fill up and then some ribose may be hanging around extra. You can just tinker down, a bit and see if you hold your benefits. You can always go back up if need be. Ribose is also expensive, so if you maintain at say 1/2 your dose or less you will save some money too.
Just go down slowly.

Your reaction is a good sign... and I'd take it that you have some mitochondrial stress and this is working for you to improve ATP production.

Nervous 03-21-2011 07:15 PM

Quote:

Originally Posted by mrsD (Post 754967)
Your reaction is a good sign... and I'd take it that you have some mitochondrial stress and this is working for you to improve ATP production.


I am taking it the same way. For fifteen years, I've been complaining to doctors about fatigue and lack of energy. My complaints didn't interest them.

Nervous 03-21-2011 07:34 PM

Here's a summary of what I have understood so far.

-- D-Ribose is widely believed to be safe.

-- There is some evidence that d-ribose may elevate blood sugar levels (hyperglycemia). However, there seems to be about the same amount of concern that it may lower blood sugar levels (hypoglycemia).

-- There is some concern that d-Ribose may elevate blood levels of uric acid, which may lead to gout or kidney stones. However, regardless of whether d-Ribose elevates uric acid levels, there is less than universal acceptance of the idea that high blood levels of uric acid causes gout or kidney stones.

-- A hedge against high uric acid levels may be strawberries.

-- A hedge against kidney stones may be drinking adequate water each day. (A doctor recently told me that he has had five kidney stones, and it is his understanding that a predisposition to kidney stones may be congenital. Other than that, he didn't have too much faith in the "drink plenty of water" idea.)

-- While I haven't spent a lot of time on this, I still have not found anyone on the net or anyone among my healthcare providers (e.g. just saw my chiropractor today) who knows of anyone who has experienced gout or kidney stones as a result of taking d-Ribose.



That's it so far. I hope that, if she is so inclined, mrsD will correct anything that I have gotten wrong here.

mrsD 03-22-2011 12:51 AM

That seems to be a good synopsis in general.

Gout or elevated uric acid levels is a genetic defect as far as I know. Primary uric acid level increases are due to a defect in metabolizing purines.

Secondary uric acid elevations can come from sudden purine flooding the system, which can occur during chemotherapy for leukemias. The elevated white blood cells die at a rapid rate and flood the enzymes so they cannot remove the uric acid produced quickly enough, so gout may occur in a person who does not have the genetic defect. Usually treatment which is temporary, helps this, and is discontinued when the chemo is over.

Some people who are borderline with uric acid problems can have gout attacks when getting over infections. During infections, white cells increase, and then are metabolized away after. This can initiate a gout attack in some people.

I don't think changing food intake has been found to be helpful for gout patients. In the old days, avoidance of rich foods and alcohol were advised. Even Legumes were to be avoided. But now it is pretty well accepted that gout is an internal disease and not that responsive to diet.

Gouty arthritis may also be called pseudogout...and involves calcium rather than uric acid. It presents as "gout" but it is not really because there is not the corresponding elevation of uric acid.

I really don't think the fruit thing is effective enough for genetic uric acid elevations. But it might help with pseudogout.

Typical treatments may include potassium citrate to change pH of the urine, or sodium bicarbonate. These may be more effective than fruit intake.

What bothers me is that ribose is not plentiful in foods. If our bodies were primed (evolved genetically) to need this sugar in large amounts, we'd see it in more food sources. It is present in riboflavin, Vit B2.
But even then intake of this vitamin is quite low.

When we take substances in mega amounts, we have to be very careful.
This concern has also been watched for B12 ...but research has been done on that, showing no toxicity in large doses. I don't think we have the same level of studies on ribose. So some caution should be followed.

Many bodybuilding sites, recommend huge amounts of supplements and high doses of some. Creatine is one. That one also remains controversial. Building muscle rapidly is different from maintaining a body type.

So please be vigilant if you have any side effects down the road with the ribose in high doses. Maintain good hydration also.

Next time you visit the doctor, you can request a uric acid level blood test. That should show if you have a potential for gout.

mrsD 03-26-2011 02:11 AM

Taurine for diabetics with PN:
 
I found this article today while searching Taurine for my kitten.

http://www.ncbi.nlm.nih.gov/pubmed/21437784

Quote:

Amino Acids. 2011 Mar 25. [Epub ahead of print]
The potential usefulness of taurine on diabetes mellitus and its complications.

Ito T, Schaffer SW, Azuma J.

Department of Pharmacy, School of Pharmacy, Hyogo University of Health Sciences, 1-3-6 Minatojima, Chuo-ku, Kobe, Hyogo, 650-8530, Japan.
Abstract

Taurine (2-aminoethanesulfonic acid) is a free amino acid found ubiquitously in millimolar concentrations in all mammalian tissues. Taurine exerts a variety of biological actions, including antioxidation, modulation of ion movement, osmoregulation, modulation of neurotransmitters, and conjugation of bile acids, which may maintain physiological homeostasis. Recently, data is accumulating that show the effectiveness of taurine against diabetes mellitus, insulin resistance and its complications, including retinopathy, nephropathy, neuropathy, atherosclerosis and cardiomyopathy, independent of hypoglycemic effect in several animal models. The useful effects appear due to the multiple actions of taurine on cellular functions. This review summarizes the beneficial effects of taurine supplementation on diabetes mellitus and the molecular mechanisms underlying its effectiveness.

PMID: 21437784 [PubMed - as supplied by publisher]
It is rather a new paper. I have used taurine for sluggish gall bladder issues in the past. And I have seen it listed as a supplement for people with insulin resistance.

I think one would need at least 1000mg a day. Perhaps 2000.

axseptants 04-11-2011 09:49 PM

Mrs. D - Thank you for sending me the link to all the posts about supplements for PN and the links to articles about PN (causes, diagnosis, and treatments). All very helpful!!!

I know all supplements/treatments won't work for all types of PN. What do you know about PN caused by autoimmune disorder, like Sjogren's Syndrome, or caused by autonomic nervous system dysfunction. If PN has one of those causes, will supplementation still be effective? Or is PN that is caused by autoimmune or autonomic problems less responsive to supplementation therapy? I can't remember where I got this sense, but I remember seeing this somewhere. Hopefully I am wrong.

Thank you.

mrsD 04-12-2011 05:56 AM

There is a connection to immune dysfunctions and low Vit D.

So getting that tested is important.

Also autoimmune issues have inflammation present, so using things that dampen inflammation would be helpful.
Fish oil 3 a day (or Krill oil, 2 or 3 a day)
antioxidants, like grapeseed extract, enhanced absorption curcumin, and/or astaxanthin may help. I use 200mg of grapeseed extract for my arthritis and seasonal allergies.

Sometimes there are more than one thing going on. People can have multiple problems. ;)

If you are having fatigue, then supplements that improve energy in the mitochondria may help. R-lipoic acid, acetyl carnitine, and/or the ribose may help that.

Inflammation can be fueled by diet and food choices. So eating an anti-inflammatory diet may help.
You can look up inflammatory indexes on this site of your food:
http://nutritiondata.self.com/

Getting rid of sugars in all forms is a good first step. Increasing insulin in the body increases inflammatory actions. So eating a low carb, high protein, moderate good fats, diet is helpful.

Nervous 05-04-2011 09:53 AM

A study reported in yesterday's New York Times stated that high levels of CoQ10 correlated with higher incidents of certain very aggressive forms of prostate cancer. There was also something about high levels of omega-3.

Anyone else see this in the Times?

mrsD 05-04-2011 10:17 AM

This is the article I believe:
http://www.nytimes.com/2011/05/03/he...er=rss&emc=rss

No where does it state what high levels were.

How much fish oil had to consumed to give those "high" levels.

With nutrient research there is typically a back and forth of positive and negative outcomes. Some depend on who does the research and how the study participants were chosen.

I'll see later if I can find the study on PubMed... can't do it right this minute...but later I will try.

Quickly I found this that quotes a Harvard study showing the reverse:
http://www.huffingtonpost.com/craig-..._b_832661.html

Nervous 05-04-2011 11:19 AM

Quote:

Originally Posted by mrsD (Post 767510)
Quickly I found this that quotes a ... study showing the reverse.


It seems like we often find ourselves in this position. It's hard to make good decisions when the arguments can go either way.

Personally, I am backing off of my supplements routine this week. The reason is that I tend to go overboard and pile everything on. I think that can be hard on my body. So, I'm adding things back a little at a time. I don't know if I will "feel" when I have reached the correct dose of something like Vitamin D, but I will see how things go.


All times are GMT -5. The time now is 11:13 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.