Does the quality of acetyl carnitine vary widely from different sources? Sadly, we didn't learn much about preventing PN prior to chemo because it was all such a rush for surgery. He showed no signs of PN until two weeks after the very last treatment when it hit very hard.

Yes. Plus we've learned that removing the duodenum can prohibit iron absorption and the partial gastrectomy can inhibit B12 absorption. The gallbladder removal has lead to issues with bile reabsorption and he is taking cholestyramine to help with that.

I've wondered about IV supplementation. How does one locate a reputable naturopath or holistic MD?

Yes, it is complex! I'm hoping we can find something that will help lessen his pain in the short term and help his nerves to heal in the long term. I purchased the Biofreeze you mentioned and went ahead and picked up a bottle of Neuragen as well. Hoping one of them will help him get at least one night of decent rest.

Thanks!! Trish

Most quality acetyl carnitines will be safe.

NOW brand, Doctor's best, etc. The quality makers
use GMP manufacturing. NOW and Doctor's best are
less expensive than some others like LEF.

iherb.com offers many brands to check out.

Check your Yellow Pages under physicians and there might
be a listing for holistic MD. Some hospitals also give recommendations.

There are IVs called Meiers Cocktails with various nutrients added. They are made by compounding pharmacies. Be sure to check out those too...some have run into problems with quality. However, many IVs have glutathione added, and this is helpful for PN as well. Dr. Jay Cohen MD has a statement on his site that glutathione IV helped a patient with PN induced by fluoroquinolone antibiotics. Glutathione cannot be used orally.

Here is one article on one chemo type and glutathione:
http://www.ncbi.nlm.nih.gov/pubmed/1...ubmed_RVDocSum

Cholestyramine will adsorb drugs and nutrients. It has to be used carefully and spaced away from other things.
Taurine has been helpful in people with bile flow problems.
Sluggish bile release may be helped with this supplement, 500 to 1000mg a day.

R-lipoic acid may help with blood sugar utilization, and also with the mito functions.

Your husband has been thru alot!

Alpha Lipoic Acid really helped my husband's PN. His too was drug induced. He used Alpha back in 2003 since R-Lipoic wasn't available then.

If you have a local compounding pharmacy, you can ask them for names of doc in the area. This would give a place to start your search for doc who does IV nutrients.

NAC (N-Acetyl-Cystiene) (sp), is also very good for boosting ones own glutathione.

John also got relief from the Rebuilder. You can do a search on it in this forum and many posts will come up.

Chiropractic adjustments helped tremendously with his gait, balance and even some of the pain.

Now, I do reflexology on his feet using therapeutic grade essential oils. And he gets relief from this. His feet continue to heal. He was at an 8 or 9 on the pain scale. His feet were purple on the top and white on the bottom. He's probably down to a 1 now and the color is pretty much back to normal. Burning sensation is his biggest issue in the summer when his feet get hot.

I'm hoping to learn more about ALA. Please share specifics! I'm still combing through the forum but may have missed that discussion.

My youngest son was borderline autistic when younger and I did a fair amount of supplement research back then (he seemed to thrive with omegas and zinc and therapy -- no longer on the spectrum). There was quite a bit of talk about chelation and autism and I think ALA has chelating properties. Is chelation a concern with PN? I remember it being controversial for austistic kids, but that might be due to a potentially weaker blood brain barrier.

Also, ALA is a high dose antioxidant. I'm still trying to figure out the correct stance on antioxidants and cancer. We stayed away from antiox supplements during treatments and have tried to add antiox rich foods to his post-treatment diet as tolerated. He gets some extra antiox from vitamins but who knows how well that is absorbed. In my husband's case he has a rare genetic mutation that prevents his cells from making a protein needed for cell repair. I see how antiox can hopefully help prevent cell damage, but worry about possibly aiding the cancer at high doses.

He used to take C0Q10 (before the cancers) and it looks like that may be good to add back now.

I'm investigating carnitine. A friend has a family member with a mito disorder and they use huge amounts of carnitine (Carnitor RX) for that. She is not keen on the OTC supplements, but OTC might be fine for PN since it is not quite on the same scale of a disorder.

In reading about CIPN and it sounds like "magnesium and calcium solutions" have been tried as both a preventative and a treatment with some success in clinical trials. Is anyone familiar with these types of solutions? The ones reported are IV and not something one can pick up at the local pharmacy. Are there suitable home approaches? Do doctors ever RX these treatments for PN?

Sorry to have so many questions! I appreciate all the helpful information!!
Trish

The carnitine sold at epic4health.com
is the same as carnitor RX. Sigma Tau manufacturer
http://www.epic4health.com/lcar60cap.html
http://www.sigmatau.com/sxProdRx/products_rx.asp

I used to use this, but I switched over to acetyl form, since it is
better absorbed, and the acetyl has more research behind it.
(the AIDs community has used it for many years now).

I think you'd have to ask the holistic physician about the Ca/Mg IVs... I think I have only seen one patient coming to boards who did get the IVs like the Meier's cocktails.

Thanks for all the great info! I'm reading about Glutathione (and NAC). This is a new one for me. It sounds like it could be very helpful both for the PN and for some of the liver damage incurred during treatments. He takes milk thistle for his liver but it sounds like glutathione would be beneficial as well.

Hi Trish,

John took 300 mg ALA 2x/day. If memory serves me correctly, the studies done in Germany with ALA were at 300 mg 3x/day and higher. They used this to treat diabetic PN.

I think the R-lipoic acid is the new and improved version and allows you go with a lower dose. I don't know exactly what dose that would be but I would think you could cut it in half and start with 150mg 2x/day. Others with experience with will know.

Regarding the antioxidants and cancer issue is not clear at all. When John did his chemo, which was a high dose over 4 days, his doc did not want him to use the NAC during those four days. The reason being is that it can improve the liver detox pathways and mess with level of drug in the body. In some cases, it makes drug more effective and in others, eliminates it quicker and they needed him to have a a lot of the drug in system to make sure it wiped out his bone marrow. Your husband probably has a lot of deficiencies at this point that need to be corrected and there's a lot of oxidative damage that has occurred. This was true for John also.

Sometimes I think they don't want people to use supplements and herb because then they would do other than "assembly line" treatment. They want a certain level of predictability. If they were really concerned about feeding the cancer, they would take tougher stance on the use of sugar. It is proven that cancer loves sugar and thrives when diets are high in sugar.

Hope this helps....M