Back home from Johns Hopkins
 

I am so happy I went! I learned more in a 1 hour visit with the neuro than I have learned in 12 years of looking for answers in NYC

I hope you will find the following info useful for your own PN issues. Here goes:

1) having more than 1 cause of PN has a synergistic impact, ie, having chemo/toxic PN, combined with diabetes and very high triglyceride levels amp up the sx and the nerve damage. Here's his explanation: hypothetically, if diabetes is a 2 and chemo damage is a 2 and triglyceride damage is a 2, it does not add up to a 6. It will add up to something off the charts because all 3 causes work synergistically.

2) newest studies show that aerobic exercise performed at least 5x per week will stop the progression of PN. The chemicals produced during exercise help to heal the nerves!!

3) he suggested I take a statin drug to reduce my triglyceride levels. He assured me a statin will not worsen my PN.

I do not know the results of the skin punch biopsy yet. I'll post them when I get 'em.

I wish there were a NY equivalent of a Johns Hopkins. I am especially grateful to Nide (Bob) since without his posts, I would not have known about JH's excellence. And of course, without this forum I would not have had access to valuable support & information.

There are posters here who have developed PN from statins.

That's exactly why I protested when he said to take one. He reassured me that it would not add to my sx. I guess the only way to find out is to try it...but I absolutely do not look forward to more drugs.

I think I will also research a non-statin way to reduce triglycerides. There must be some supplement or combo thereof that has worked.

There are certainly dietary and lifestyle ways; the aerobic exercise is one of them. I've cut out all the nasty carbs, and that's gotten mine down where the PN neuro had to shut up about it (shoulda seen the look on his face!)

Doc

The statistics continue to mount.... this guy obviously likes business. Either that or he has major stock investments with those companies making statins.

http://www.statinanswers.com/effects.htm

another:
http://www.suite101.com/content/stat...effect-a221061

Guess I won't be going to JH any time in the near future!

as far as the exercize goes, of course if you are able to exercize doing so will benefit you in many ways, pulmonary, cardiac, circulation etc. That being said, many posters on here over the years have been runners, cyclists, body builders, mountain climbers, skiiers etc. and the exercize that they did did not prevent them from getting PN. Will it help to stop or even reverse the damage being done by pn, probably for some, maybe for others and not for the rest. Is exercize a treatment for PN?, i dont buy it.

There are safer ways to lower triglycerides.

Fish oil is one.

What is your triglyceride reading? Do you know what it is?

Really high numbers, can be controlled by diet as well.
http://www.webmd.com/cholesterol-man...rides-overview

Just so you know:

My doctor pushes statins on me every visit. My answer is always the same. She just logs in my file I have rejected the medication. This is a liability issue, not a medical one IMO. In fact I typically get lower cholesterol readings with metformin (which I just restarted) and she pushed them again before I even had the tests.

Statins for older patients increase hemorrhagic strokes. This is a given and in studies. Do you want that risk?

Any doctor pushing statins on a person with multiple causation PN.. already... needs a rethink. Don't spend your money on this person!

Just read what is out there on statins now. Each day the information stacks against them. Not the reverse. And the most impressive studies come from nonAmerican sources. That should tell you something in addition.

Ummm... That would suggest to me that Danes have a 4-14 times greater risk (that seems a wide variance to me), but not much about people of other ethic origins, especially mongrels like myself (with no Danish whatsoever). I think I'd rather see numbers on that vast melting pot.

Doesn't mean I'm arguing for statins; I just have a problem with the guy's premise.

Doc

This is what happens with statin side effects. They are blamed on something else when reported to the doctor, or ignored.

http://medicationsense.com/articles/...cts012108.html

This also happened with SSRI drugs. When patients brought concerning side effects to their doctors' attention...they got an increased dose! This happened with children!

I'm willing to suspend disbelief and since exercise usually doesn't hurt, I'll give it a try. I have nothing to lose. My mobility is quite impaired and unless I fracture something while exercising, what the hell?

He recommended either water aerobics or if not do-able, a stationary bike. I can manage both but a bike is much more convenient. He didn't say it's a treatment for PN but it goes into the basket of beneficial stuff you can do.

I have no clue as to why runners, skiers, sprinters, etal develop PN. However, one scenario comes to mind: If a toned cyclist develops cancer and has chemo for it, will the toxic effects of the drug be prevented/ameliorated by the person's superior aerobic condition prior to the cancer dx? Or will he/she be as vulnerable as a deconditioned couch potato? A lot might depend on the cause of the PN.

My reading is 400+ and my research suggests that the elevation could be a result of my messed up thyroid. I have a supersized bottle of Costco fish oil which I think I will try before Crestor.

In 3 months I got my triglycerides down to 88 from 154 by diet alone. I was on a statin for about a year but had terrible side effects. It did nothing for lowering triglycerides. I stopped eating sugar and white flour. I eat only good carbs, and nothing with preservatives. When I was on the statin it lowered the bad LDL but also the good HDL. It did nothing to lower triglycerides. The only thing that did that was diet. At this point in my life I finally believe, "We are what we eat".

Antonina,

Maybe I missed something from your first post. Did he think you have more than one cause of PN? If so, what are the causes he thinks apply to your case and how did he come to this conclusion? Are you diabetic?

Glad you were happy with the visit. JH has lots to offer.

[RANT]
That's what happened to me when my gut went kaflooey. Bozo the Gastroenterologist prescribed asacol (ASA-5 drug). Each time I reported I was getting worse and bleeding more, he increased the dosage until he wanted to put me in the hospital and cut out half my colon. That was where I put my foot down, got on the SCD, and cured myself within a year. Haven't looked back since except that now most NSAIDs cause bleeding again. Colon is probably permanently damaged, but intact and otherwise healthy!
[/RANT]

Doc

my md prescribed 4 grams of Lovaza for my high triGlycerides. basically its very pure omega 3 fish oil......

i went form a ~400 to under 200; hoping for further decreases as we go.

So far there are three: diabetes, chemo & elevated triglycerides. I also saw an endocrinologist @ JH on Thursday re: an outta whack thyroid which can add one more cause to the other three. I'll know more when I get the lab results next week.

All of the above is not good news but at least I now have some answers.

I had a great experience @ JH and even if I don't have ALL the answers, it's a good start. If it weren't such a major production, I'd like to go back for other health issues. You're lucky you can get there in 3 hours!

Hypothyroid issues can cause significant peripheral neuropathy symptoms. That is what I had starting at about age 30. My hard to diagnose thyroid (it is damaged on the left side only) wasn't discovered until my mid forties. By then my feet were numb after having gone thru alot painful years. It took about a year on thyroid hormone for them to wake up...tingling all the way.

I had high triglycerides too... 385+
I lowered them in 3mos with fish oil. I now take Krill oil (2 a day) and hold at 150. For you I'd start at 2 or 3 fish oil or two concentrated ones. Most are OTC but Lovaza fish oil is RX and your insurance may cover it. I switched to Krill oil, last spring and it works the same for me. Same blood work. No changes.

For a doctor who claims to be a PN specialist to give you such statin advice is ridiculous IMO. Especially since statins are not great interventions for elevated triglycerides anyway! One would expect a PN specialist to know all the drugs capable of causing PN (cell damage!).

Gentle exercise improves blood sugars in type II diabetics, and improves circulation. I've never heard of it curing anything tho. But it is in general good for you. Don't do high impact things with your feet.

Diet also helps. No alcohol, and limit sugars and white flour/potatoes/rice as much as possible.

Antonia--
 

--I think you've just discovered the "double-crush" hypothesis for nerve damage. (I've written a number of posts about it.)

In general, yes, you can have multiple conditions contributing to your neuropathy, and they tend to act together out of proportion to the "sum of their parts". Anyone who has systemic compromise of nerve, due to toxicity, glucose dysregulation, autoimmune effects, etc.--becomes very much more prone to compressive or other insults to nerve (it is thought that thyroid neuropathy is primarily compressive in action--a malfunctioning thyroid allows swelling and deposits in narrow areas in which nerves are prone to be compressed already, such as the carpal and tarsal tunnel areas), and the resulting symptoms are more than additive.

I would think that high triglycerides are part of the same "beast" as insulin resistence/glucose dysregulation, whether inherited or acquired (that 400 level is pretty high)--it's all part of metabolic syndrome, which is a big nerve compromiser. High glucose levels poison nerve; the circulatory/ischemic problems that come from high triglycerides/high LDL compromise the ability to get oxygen/nutrients from getting to nerve and waste products from getting out, the slower moving system allows fluids to pool and compress nerve--it's all part of a piece.

And, of course, you've had neurotoxic chemotherapy.

That said, I would caution about adding potential other causative factors to the mix--including statins. They don't cause side effects in everybody, but there've been enough people with myopathy/neuropathy from them to proceed with caution, especially for one who already has ongoing nerve problems. High quality fish oil, methylcobalamin (to reduce homocysteine mediated inflammation), and a lot of soluble fiber are probably better ways to go.

Mrs. D,
Thanks for all the good info. Would you please tell me the brand of krill oil and the strength? I have a hard time swallowing the jumbo Costco fish oil pills. I've done a search and found Schiff Mega Red and Neptune Krill Oil 500. Do you know anything about either of these? TIA

I use Mega Red.

I'd suggest you start at 3 a day. Get retested in 3mos.
My triglycerides went down in 3 months back when I started the fish oil.

You will also benefit from the astaxanthin in them. They have no reflux, for me. And are very small.

I get mine at Costco. But Amazon has some good prices too.

I have a PCP who is a statin worshiper. she thinks that statins are the greatest boon to mankind since the invention of smoked turkey.

I also refused them and upon Mrs D's advice a few years ago started with Zetia and have had continuing results with it.
My Rx ins. co. continues to write me about using statins in place of the higher $$ Zetia. they write to me a few times a year & I just ignore the letters.

Some memebers of the medical profession are definitely sold on the miracle of statins and refuse to accept the opposing evidence stating its coincidental or some other reason.

My doc has had to accept that Zetia does the job for me, and seems to
just look the other way, but has continued to Rx it for me..... for about 5 years, now.

Does Zetia help with lowering triglycerides?
I'm ignorant of the differences between cholesterol & triglycerides.

No, Bob. Zetia blocks cholesterol absorption from the GI tract.
That is all it does.
Alot of cholesterol is lost thru bile salts, and reabsorbed that way. So that cholesterol would pass thru anyone taking Zetia, as well as what we eat in food.

Zetia did not work for me, at all. :Dunno:

Sorry about that, but its been a boon for me for the past 4-5 years or so.
Has lowered my cholesterol from about 250 to 138.
I was fortunate that I did not have a seriously high cholest. #
and could benefit from what Zetia can do.
My doc has to admit that it works, for me, at least.

Is it possible to get krill oil that is absorbed in the intestines? The ones that disolve in you stomach kill me as I have GERD and I'm on medication for it and my opthamologist has me taking 4 pills a day to keep me off of tobradex drops and ointment.

Try 2 at one meal with food, and 2 at another.

I don't believe there are enteric coated Krill oils. They are so easy to tolerate...not needed.

Apparently the high protien/low carb diet I'm on does. I had high triglyceride levels for years, but my docs had split opinions on whether it was something to worry about.

As I've mentioned before, I went on this diet to help control intractable pain, and I believe it is helping, along with helping me lose some weight. I was on it for several months before seeing the PN guys at Strong. The neuro noted it, but didn't say anything about it being a cause, and wanted to put me on something.... I think a statin, but not sure. I declined and asked to be tested before I'd acquiesce. The tests came back well within limits (and I got another unsolicited comment about him knowing people who would pay money for my test results). It's gotta be the diet - the low carbs in particular. This was before I started on most of the supplements, etc.

Just FWIW - diet can work. Maybe not even as stringent as mine, but reduce those sugars, dairy & starches....

Doc