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Sandramoderator
Member since Feb-27-07
807 posts
Jan-07-09, 10:05 PM (PST)
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"Accounts of P/N reversed or prevented"
 
I need everyone's help here - I'd like to start a thread asking people to post here if they have found that a certain supplement (or supplements) has helped to either prevent, or reverse peripheral neuropathy from DCA use (with or without chemo). I'd even like to hear if a treatment (like acupuncture) has worked.

Thanks very much,
Sandra


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Accounts of P/N reversed or prevented [View All], Sandramoderator, 10:05 PM, Jan-07-09, (0)  
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dimitriskmoderator
Member since Mar-19-08
194 posts
Jan-07-09, 10:36 PM (PST)
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1. "RE: Accounts of P/N reversed or prevented"
In response to message #0
 
   My sister is on 20-22mg/Kg since July, 4 days on, 3 days off and has never complained about any P/N symptom. She takes 2x120mg R+ALA, a lot of other stuff (most from your list) and also 3 capsules of WSNŽ Nerve Support Formula, the one you have suggested to me
http://www.realfoodnutrients.com/NEU/ProductInformation.htm
plus 3x100 Benfotiamine, which makes a total of 600mg of bioavailable B1. My impression is that the more B1 the better, and also that NSF is good product for our case (and quite cheap).


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dimitriskmoderator
Member since Mar-19-08
194 posts
Jan-07-09, 10:37 PM (PST)
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2. "RE: Accounts of P/N reversed or prevented"
In response to message #1
 
   Correction: 3x120mg R+ALA


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chrisz
Member since Jul-13-07
82 posts
Jan-09-09, 05:12 AM (PST)
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3. "RE: Accounts of P/N reversed or prevented"
In response to message #2
 
   Hey sandra,
i'll get back to you in a minute.
were having a really ruff time with Rosie's PN.
right now she is off everything till we figure this out.
i gotta run but i'll be back with what were doing

chrisz


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chrisz
Member since Jul-13-07
82 posts
Jan-09-09, 06:27 AM (PST)
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4. "RE: Accounts of P/N reversed or prevented"
In response to message #3
 
   ok,
rosie's P/N has gotten really bad.
we stopped DCA but the real culprit was the taxol.
after 2 months on taxol and avastin and dca she really started getting bad.she had been on DCA prior for at least 2months and had no PN at all.

it's hard to tell what caused what but i'll try here.
Dr Khan had mentioned that the DCA could either help the chemo or inhibit it. i think in rosie's case it turned the taxol into a much stronger form of taxol. (my opinion here)
after 2 months on taxol/dca /avastin rosie's scans were greatly improved. the docs were a bit surprised that the scans were as good as they were.
but the PN kicked in.
she stopped taxol on nov. 17
she is on her off week of dca, but i will keep her off dca till we see a change in the PN she is still on biweekly avastin

the meds for the PN are;
B1/lipoic/amitriptyline and neurontin.
the neurontin really messes her up.

were trying to figure out exactly what is causing the PN
i rub her feet every night and put warm towels on her feet.
the PN seems really bad at night.
her fingertips are tingling but her feet are really bad.

other things that have helped are ritalin and more oxycotin.
not something we want to continue to do.

today she was a little better, so i am curious to see what the next couple of dayz bring.
rosie has not done acupuncture, at least not for the PN.

i hope some of this info helps you in any way.
if we make any progress i will keep you posted.
chrisz


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dimitriskmoderator
Member since Mar-19-08
194 posts
Jan-09-09, 12:20 PM (PST)
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5. "RE: Accounts of P/N reversed or prevented"
In response to message #4
 
   >the meds for the PN are;
>B1/lipoic/amitriptyline and neurontin.

I think it would be better to write how much B1/lipoic she is getting, and in what form (benfotiamin, R+). My impression is that the more benfotiamin, the less P/N symptoms.
Also, a right formula for P/N should include B2,B6,B12 and folic acid. I know that there is an arguement about all these supplements that might feed tumor, but the point is to find the optimum dose.


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chrisz
Member since Jul-13-07
82 posts
Jan-09-09, 01:36 PM (PST)
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6. "RE: Accounts of P/N reversed or prevented"
In response to message #5
 
   rosie does 300mg of B1 1x100 3x a day
300 mg of B6 1x100 3x a day
and 900 mg of Lipoic R(+) SR (2x150mg 3x a day)
the neurontin is 500mg 4x a day
and the amitriptlyn is 30mg at night before bed.
rosie only does the Lipoic when she is on her dca weeks.
although i think she will stay on Lipoic during her off wk from now on.
sorry it was late.

chrisz


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Mack
Member since Jan-9-09
65 posts
Jan-12-09, 03:43 AM (PST)
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7. "RE: Accounts of P/N reversed or prevented"
In response to message #6
 
   I was interested in hearing on another thread if anyone had combined DCA with acetyl l carnitine to see if it was more effective (it is a mitochondrial booster) but I also remember seeing some studies that suggest ALCAR may help with neuropathy, although it those cases it was in relation to aids drugs, diabetes and lessening the neuropathy of chemo drugs. The following are a few extracts taken from recent www.pubmed.gov papers:

"Acetyl-L-carnitine (ALC) has gained clinical interest for its analgesic effect in different forms of neuropathies associated with chronic pain, such as diabetic and HIV-related peripheral neuropathies. The antinociceptive effect of ALC has been confirmed in several experimental models of neuropathic pain, including streptozotocin- and chemotherapy-induced neuropathy, and the sciatic nerve chronic constriction injury model. In these models, prophylactic administration of ALC has proven to be effective in preventing the development of neuropathic pain. In addition, ALC is known to produce a strong antinociceptive effect when given after neuropathic pain has been established. ALC can also improve the function of peripheral nerves by increasing nerve conduction velocity, reducing sensory neuronal loss, and promoting nerve regeneration. Analgesia requires repeated administrations of ALC, suggesting that the drug regulates neuroplasticity across the pain neuraxis. Recent evidence indicates that ALC regulates processes that go beyond its classical role in energy metabolism. These processes involve the activation of muscarinic cholinergic receptors in the forebrain, and an increased expression of type-2 metabotropic glutamate (mGlu2) receptors in dorsal root ganglia neurons. Induction of mGlu2 receptors is mediated by acetylation mechanisms that involve transcription factors of the nuclear factor (NF)-kappaB family."

"Certain drugs are known to exert more than one action on different pathophysiological mechanisms. This is the case with acetyl-L-carnitine (ALC), which can be considered both a symptomatic therapy that can be used in any kind of painful neuropathy, and an aetiological therapy, at least in diabetic neuropathy and neuropathies induced by nucleoside reverse transcriptase inhibitors and cancer chemotherapeutic agents. ALC acts via several mechanisms, inducing regeneration of injured nerve fibres, reducing oxidative stress, supporting DNA synthesis in mitochondria, and enhancing nerve growth factor concentrations in neurons."

"ALC has demonstrated efficacy and high tolerability in the treatment of neuropathies of various aetiologies, including chemotherapy-induced peripheral neuropathy (CIPN). In several experimental settings, the prophylactic administration of ALC prevented the occurrence of peripheral neurotoxicity commonly induced by chemotherapeutic agents. In animal models of CIPN, ALC administration promoted the recovery of nerve conduction velocity, restored the mechanical nociceptive threshold, and induced analgesia by up-regulating the expression of type-2 metabotropic glutamate receptors in dorsal root ganglia. These results, plus the favourable safety profile of ALC in neuropathies of other aetiologies, have led to the effects of ALC on CIPN being investigated in cancer patients. Preliminary results have confirmed the reasonably good tolerability profile and the efficacy of ALC on CIPN. The present studies support the use of ALC in cancer patients with persisting neurotoxicity induced by paclitaxel or cisplatin treatment."

I hope this helps. I do not know how DCA and ALCAR will go together. I wish you all the best.

antony


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eponine
Member since Dec-28-08
7 posts
Jan-12-09, 12:31 PM (PST)
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8. "RE: Accounts of P/N reversed or prevented"
In response to message #4
 
   Hello everyone,
We are new to the DCA experience, but we have a little information on P/N experienced by my sister-in-law. She has been on DCA for only about 3 weeks now with 5 days on/2 days off and about 18 mg/kg. She had been tolerating DCA quite well until one evening about a week ago. She was taking 3 100mg B1, but had developed a similar situation to Rosie that you are describing...serious numbness to the feet. We elevated her feet a little and gave her 2 extra B1 tablets. She has found that the P/N of numbness to feet has gone away and not returned for this week at least. We continue to give her 500 mg of B1 per day all at once in the morning before the DCA. I hope this helps.

Eponine


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parachute
Member since Mar-20-07
60 posts
Jan-13-09, 02:19 AM (PST)
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9. "RE: Accounts of P/N reversed or prevented"
In response to message #8
 
   Hi Eponine,

Sandra is traveling and has no WWW access. She asked me to to pass on her suggestion that you switch from B1 to the more bioavailable form, Benfotiamine.

And here's a link from Sandra:

http://www.thieme-connect.com/ejournals/abstract/eced/doi/10.1055/s-2001-17399;jsessionid=1A424C64A900A89F2B5BABB0170F3ECA.jvm3

Benfotiamine is available here, among other places:

http://www.lef.org/Vitamins-Supplements/Item00925/Mega-Benfotiamine.html

Parachute


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michele lee
Member since May-26-09
76 posts
Jun-21-09, 04:25 PM (PST)
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10. "RE: Accounts of P/N reversed or prevented"
In response to message #0
 
   I don't take DCA, but I can tell you that I have been on Taxol for a year and a half because I have no side effects. (Taxol is notorious for causing significant neuropathy.) It's because I take 4 or 5 IP6 & Inositol tablets (Enzamatic Therapy brand) twice daily. The inventor, Dr. Samshuddin, recommends 8 twice daily. His brand is available on the Internet, but it's a tad more expensive with shipping costs. It's the best immune enhancer I've used, including beta glucan.


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oracle
Member since Mar-17-07
168 posts
Jun-21-09, 05:47 PM (PST)
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11. "RE: Accounts of P/N reversed or prevented"
In response to message #0
 
Hi Sandra Lien gets acupuncture during most of her chemos and the results literally got her back on her feet again. I mean withing a few weeks she was actually walking after months of a walker. She still uses a walker for stability after chemo s but it was a huge step up.

This acupuncturist trained in China and directed his practice specifically for cancer treatments so he does not use the same treatment for all cancers its not a one pin fits all approach.

Another thing I noticed was when I blended up a liquid combo of:

L_glutamine 4600mg, with B1 800mg, with magnesium 400mg and potasium (liquid) one tbl spoon.

It really got her up and about. We have found that neuropathy is not just from DCA but from other things like a lack of potassium in the muscles. When muscles are missing potassium they contract up and cramp as well as causing poor balance which we misinterpreted until our naturopath Dr. Geniac tuned us in.

Lien really responded well to this little protocol but obviously its just our results.

Here is a link to a product designed for neuropathy that I shied from due to the B12 but am thinking about it. Its loaded with goodies so it might be worth a look. Methylcobalamine 1000 mcg is the one I am not familiar with - Yet


see --

A NEW type of vitamin B1 has been produced, called Benfotiamine. It is a fat-soluble version of vitamin B1. What does this mean? It means this new form of vitamin B1 can be taken orally in large dosages and it will not flush out of the body the way ordinary Tiamine (vitamin B1) does.

The result is that by taking Benfotiamine the blood stream levels of vitamin B1 can now be greatly increased, nutritionally supporting the body to rapidly and effectively decrease or eliminate the symptoms of Peripheral Neuropathy.

Methylcobalamine (called Methyl B12)

It has also been found that neuropathy can be caused and made worse by insufficient amounts of vitamin B12 in the body. Vitamin B12 supports the sheathing that protects nerve cells and it has been shown in studies that it promotes the regeneration and growth of nerve cells.

http://www.realfoodnutrients.com/NEU/IngredientsWSNNSF.htm

God Bless
- o

Oracle


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Sandramoderator
Member since Feb-27-07
807 posts
Jun-22-09, 10:47 PM (PST)
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12. "RE: Accounts of P/N reversed or prevented"
In response to message #11
 
Thanks everyone - just trying to find a fix, because PN seems to be the dose limiting side effect for DCA use.

Oracle, I thought acupuncture would work for Lien - I've read of many people on chemo getting great results with it. Magnesium is another mineral that can impact muscle spasms. It is often used to treat restless leg syndrome, as well as chemo induced neuropathy.

Hope everyone keeps the ideas flowing. Great minds together can accomplish much!!

Take care,
Sandra


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zehra
Member since Jul-25-09
9 posts
Aug-23-09, 02:09 PM (PST)
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13. "RE: Accounts of P/N reversed or prevented"
In response to message #12
 
  

Hi everybody,

My father started DCA 1,5gr (20mg/kg)daily concurrently with his chemo cycles. But the second week he experienced a night disconfort. Than I reduced the dose to 1gr daily. During his 3rd week he had P/N unfortunately. He gets also benfotiamine 3x1, R-ALA 3x1. In my opinion if one using DCA during chemo it is more likely that he/she experience P/N. May be we should start with low doses but I'm not sure.
BTW I want to share medicor clinic's advice for my father; They warn me not to use ALA during chemo as they say it can interfere. I don't have a scientific link for that.

Best wishes,


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