I've lurked here for some time, I have what they call SFPN idiopathic.

I come from a medical family - 6 MD's in my family and I have read a lot of the papers on this - I know the difference between correlative studies and hard science.

First, the medical industry and research industry is about the flow of money - the MD's are trained to sell you this idea that they know what they are doing - but beyond physical repairs (broken bones, knee replacements, sewing up cuts, cutting out cancer, C-sections) most of what passes for medicine is hand waving.

If you notice that your doctor is clueless - you are on the right track - if your doctor says "I don't know" - and often - you probably have a pretty good one.

What prompted this post is the work where they saw that intravenous gamma globulin (IVIG) helps. It is not a practical treatment, has lots of risks you don't want - but the fact that it works changes things.

I think (and could be quite wrong) that what I have is caused by infection. The fact that it gets worse at times - and I feel like I'm sick - but no fever hints at that. There is a misconception that the blood tests will show infections - just not true - part of the the overstatement of medical knowledge. They can detect blood born infections - but there are infections that stay in places where there is little blood flow - just diffusion across membranes that limit movement.

A few of examples may help make this clear - not many years ago - if you had Lymes' disease the would send you to a psychiatrist - today they can detect the bug. Every year they discover new infections - and ways to detect them.

In another case, there was recent work where they treated back pain with long term antibiotics - and now know that it works in many cases. ( The disks have very little circulation ). Not that this has reduced the surgery rate - talking and handing out a prescription is not as profitable as more drastic interventions.

We also know that the chicken pox virus never goes a way - can return latter as shingles. Anti-virals don't eliminate it.

I'm not so interested in palliative care - many of these can cause other serious problems. I am interested in trying interventions that are outside of normal care.

So I am interested if others here are thinking the same thing?

Hi Irak

Welcome to NeuroTalk .

You have raised some controversial points, some of which I disagree with. For example I don't think that anybody would claim that medicine and the biomedical science which underlies it are perfect; both evolve as new data become available.

I look forward to reading the responses of other members to your post.

All the best.

@kiwi33

We all want to believe that the medical system can be of help - but there are serious systematic problems - perverse incentives - that have prevented medicine in becoming what it could have been. My purpose is not to discourage anyone, but to bring a context where the focus is not about palliative care - but about asking the hard questions that might move things forward.

An example I would offer is much of the medical dogma about cholesterol has fallen apart - some of it brought down by people taking the research into their own hands. For instance - this guy has poked a rather large hole in what passed as common knowledge about cholesterol: Google cholesterolcode

( I don't think cholesterol is important for most heart disease - it appears they have the arrow of causation backwards. Cholesterol goes up when tissue is damaged - not the cause).

If we take CAD(most heart disease) - it appears that the biggest factor may turn out to be lead exposure over one's life.. The point is accepting the narratives without question is not going to fix things.

What is causative in PN? Well we know elevated BG is in play for some people - but not much else. Is there a link with the increase in PN with the consumption of concentrated seed oil? (no one has looked at it) There are hints that metal exposure are involved in at lease some cases. The metal tests they run do not show long term lead exposure - there is a non invasive test - but no one runs it. (Lead goes into the bone - there is a florescent x-ray test).. etc etc

My biggest point here is I don't think I believe that PN will turn out to be incurable in the long term. The narrative that medicine is so competent that they can detect all types of infections is clearly false. (they miss the majority of urine culture bugs). ( Taking a viral culture of a nerve fiber is not easy nor is it practiced.) If we as patients just sit back - take the antidepressants, and benzos instead of asking hard questions of our doctors - we are part of the problem.

Some cholesterol is present in cell membranes as a component of lipid rafts. Lipid rafts have been implicated in a range of physiological processes.

Circulating cholesterol is found in lipoprotein complexes, notably HDL and LDL. There is good evidence that relatively high levels of HDL are protective against cardiovascular disease because it is responsible for reverse cholesterol transport.

There is also good evidence that relatively high levels of LDL are a risk factor for cardiovascular disease, specially when LDL becomes oxidised.

See this is the problem - that is the popular narrative, but it isn't quite true. They came out with a drug that raised HDL (torcetrapib) - more people died. The problem is HDL is not 'a thing' it is a class of things - there are over 100 sub types of HDL - some are correlated with good out comes - some correlated with increased heart disease. Yet what is most important is realizing that reading about good or bad on correlations can lead us astray - in these pathways - everything effects everything - just because something is correlated does not mean it is a causation. LDL of burn patients goes up - does that mean that the LDL caused the burn?

I think one's HDL level is mostly correlated with the amount of saturated fat in one's diet. (HDL goes up with increased dietary SFAT )

There is more than a little controversy regarding lipid rafts - could be part of a signalling pathway. .. anyway - the bodies response to a wound is to increase LDL - the weak correlation with CAD does not show causation - could just as well be the result of the injury.

There are about 16 drugs that lower LDL - but only one type has been shown to help with CAD: statins. I think it is likely statins work on the NO pathway - nothing to do with LDL - and the effect is very small. The fact that these other drugs don't work seems to falsify the cholesterol theory of CAD. (There is another bit - supposedly LDL enters the intima of the artery wall to do the damage - only no one has been able to show this actually happens - they have tried - failed studies mostly don't get published.)

I've tested myself for oxLDL - and have read extensively - turns out the level of oxLDL is mostly related to the amount of PUFA in the diet - (The double bonds in PUFA are more prone to oxidation - less stable than the bonds in SFAT - the kind of fat your liver makes).

We are quite a ways off of PN - but I'll give you one more - the PUFA fats - the ones we have been told are "heart healthy" are not! Ancel Keys was the guy pushing this - they did a hospital study - a true controlled study many years ago - the people on the PUFA diet had a higher death rate. (this was published in BMJ). This data was apparently hidden - apparently to avoid embarrassment? It was only in the last couple of years that the data was found and published. ( Ancel Keys is know for the '7 country study' only it turns out it was the 7 out of 21 countries - he cherry-picked the data).

Further - PUFA's will lower LDL but most probably by inducing inappropriate insulin sensitivity in adipose tissue - you get a lower LDL at the expense of gaining weight - all looks OK until free fatty acids go up - fatty liver disease etc. This is rather important - more than half of people in my age group have type-ii diabetes - are overweight or worse. High blood sugars are associated with a huge increase in cancer rates, lower quality of life etc. etc. The low level science is well understood - if the mitochondria burn PUFA it changes an ion ratio - and that changes insulin sensitivity. Only problem is unless your doctor is a biology nerd and reads these papers - he doesn't know about this...

In 1960 - few people in the US were obese - not until they started pushing vegetable oils. ( A correlation - but one that has been repeated in other countries as seed oils begin to be imported). The problem is that Linoleic Acid ( the predominant fatty acid in seed oils) has a 600-day half life. If someone changes their diet - they are not likely to see the effect for many years. The ungrounded narrative that plant oils are good for you, is actually seed oil marketing - and I think it has has hurt a lot of people.

I don't have any diabetes - my PN could be due to exposures to metals - but I think it is more likely an auto-immune or occult infection. (I know a lot about diabetes - my father was an ObGyn - they do glucose tolerance testing - the common fasting blood glucose only goes up after a lot of damage has already been done. )
,.,
What if the IVIG helps with PN by reducing occult infection? What if there are other treatments that could also reduce infection and effectively stop the progression? What if the popular narratives are wrong? What do I have to lose? - the risk:benefit ratio of trying things seems reasonable to me.

Yes you should try "thinking outside of the box". After seeing MANY neuro-doc's I gave up, for the most part, all I got was more meds (I have 14-different types), steroid injections, radio frequency injections (they fry the nerves) etc etc. The more they did the worse I felt.
My daughter suggested I see a Wellness Chiropractor let me stress the point of a FIRST GENERATION WELLNESS DOCTOR, since they are the farthest from a western doctor. He preformed a body test on me. Since my PN had gone (untreated) for 7-months (from car accident-brain spinal cord induced PN), he says I will never be 100% but he can possibly get me back to 80%. So he has me on herbal's for detox (damaged nerve cells put out toxins) adjustments and supplements for nerves. What he is doing is working to get my brain, to start sending the correct signals to my nerves. He also says WHAT you eat, plays a very large part in getting your body able to heal itself. NOTHING white, nothing that comes out of a box, bag, or carton, no night shade vegetables since they promote inflammation.

I'm still in a great deal of pain, but after a month now ( I see him 3 times a week) I feel better, not as depressed, sleep much better, less night time leg and feet pains, reduced burning in left foot, head pressure down to a pain level of 3, neck pain down by 50% etc (I have a lot going on, since my car accident resulted in me landing on my head from almost 3-stories).

At the very least, every PN person should at least try to alter what they eat! Trust me, it helps!

I could be one of the older seniors here and in my life have been working with alternative/holistic medicine for going on 30 yrs, and I'm 81....so started in my 50's and about when menopause hit me.

I only see Integrative MD's and I've learned so much from them that allopathic MD's would NEVER have brought to my life, I know this to be TRUE.

I believe a lot of the info out there on cholesterol being a myth and how our body and brain especially NEEDS that bad ole cholesterol!!!!!! And yet 1000's of statins are given to people every minute....bad bad bad info....

OP: I see you posted this in Neuropathy area, want to tell you about a friend who suffered with I.P. for probably 30 yrs, lots of drugs and NEVER getting improvement and more and more drug side effects..

Once I led her to Grape Seed Extract, she got rid of the drugs and the Neuropathy is so reduced in her feet and legs.

And I trusted and put faith into a surgeon for hip replacement and 9 yrs later I live with so much damage from that major surgery....talk about regrets....

Right now my daughter and I are using a homeopathic HGH gel and the results of our lives are so great, she is into 13 months and me 9 months. I've posted about it in various areas here.

So in closing, allopathic medicine has it's place but it's CERTAINLY not my first choice for about 30 yrs soon. I could go on and on with my good health and what I do and where I've been but I think you get the idea.

Glad you posted and keep coming back to post more.

I could NOT agree more, it took me a lot of years to "get it" that we do end up being what we eat. I have cut back so so so much on sugars/carbs and at 81 and all I've been thru with the OA and joint replacement mess, I do darn good in the whole picture, and the HGH homeopathic I'm using is the icing on my cake here.