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dustofsnow 02-01-2009 08:07 PM

Physical therapy?
 
Newbie to the site here. Am in 20s with lyme-induced PN that has finally spread from soles of feet all the way up to hands. :( Can no longer take pain meds b/c they make me vomit. Am in terrible terrible terrible terrible pain all the time. Life is starting to fall apart. Physical therapy ever work? TENS? Biofeedback? Massage? Local injections? Just wondering if you've ever had success with these things or other none narcotic options. Take ultram and lyrica with some success but not enough.

mrsD 02-02-2009 11:18 AM

Quote:

Originally Posted by dustofsnow (Post 458359)
Newbie to the site here. Am in 20s with lyme-induced PN that has finally spread from soles of feet all the way up to hands. :( Can no longer take pain meds b/c they make me vomit. Am in terrible terrible terrible terrible pain all the time. Life is starting to fall apart. Physical therapy ever work? TENS? Biofeedback? Massage? Local injections? Just wondering if you've ever had success with these things or other none narcotic options. Take ultram and lyrica with some success but not enough.

Are you being treated with antibiotics for the Lyme?
Were you treated..and for a long time?

Many of the antibiotics are heavy depleters of nutrients, and this side effect may be a cause or contributor to neuropathies.
If you post your RX meds I'll look that up for you.

dustofsnow 02-02-2009 12:51 PM

Quote:

Originally Posted by mrsD (Post 458634)
Are you being treated with antibiotics for the Lyme?
Were you treated..and for a long time?

Many of the antibiotics are heavy depleters of nutrients, and this side effect may be a cause or contributor to neuropathies.
If you post your RX meds I'll look that up for you.

Yes I should clarify. I am 27 now. I got Lyme when I was 10, and was treated FINALLY when I was 21 with 6 months of Rocephin intravenously. The PN began when I was 19. I no longer have Lyme disease, but the PN continues to progress. I wonder why. I wonder if the fact that I have high blood sugar (not diabetic though) for the past four years contributes. It just got into my hands a few weeks ago. I can't believe how much pain I'm in. Am I the only young person like this? Thank you for your help!

mrsD 02-02-2009 02:56 PM

that blood sugar
 
certainly is a serious consideration. If you get that under control your PN may be better.

Even minor elevations take a toll, over time.

dustofsnow 02-02-2009 03:03 PM

better?
 
Quote:

Originally Posted by mrsD (Post 458750)
certainly is a serious consideration. If you get that under control your PN may be better.

Even minor elevations take a toll, over time.

So--when you say "your PN may be better" do you mean stop progressing, or do you mean actually get a little better? This is something my doctor is really vague about. (she actually is vague about everything PN--that is why I'm asking for a referral to a pain clinic when I see her today) Perhaps it is a bit much to be asking you this, but perhaps you know!

mrsD 02-03-2009 03:15 AM

both...
 
but it really depends on you.

Good control of sugar, and a good diet does wonders.
You may need some supplement support, like lipoic acid, B12, and benfotiamine. These 3 are the basic best ones for diabetic
neuropathies.

You are young... if you have PN now that is a bad sign for the future, IMO.

A good diet to read up on is Dr. Sear's Zone. It has shown huge benefits in type II diabetics.
He has several books now, your library probably has them.
This diet is easy to follow as well. It is not "extreme" like some.

dustofsnow 02-03-2009 05:57 AM

Yes my father follows something like the zone for his MS. I saw the doctor and she referred me to a neurologist, which I am not excited about because 1)they are going to do a lot more tests all over again, she says and 2)I don't have a good history with neurologists, they have personalities like doorknobs. But I am looking forward to some more ideas and solutions. She doesn't think the blood sugar is an issue, but maybe she is wrong. You have voiced my big fear. That being so young with such disruptive PN does not bode well for the future. I need to take better care of myself. Thank you for talking to me. You are the first nondoctor I've discussed this with. THanks mrsD.

glenntaj 02-03-2009 07:12 AM

Elevated blood sugar--
 
-even at levels that are not frankly diabetic, can certainly result in neuropathy, especially painful, small-fiber varieties. In essence, it mimics the beginning stages of diabetic neuropathy.

A lot of medical people disputed this for a long time--the feeling was one had to have diabetic levels of sugar dysregulation for a while before experiencing neuropathic symptoms--but there's been a lot of recent research that impaired glucose tolerance may produce exactl the same thing.

Take a look at these:


http://www.ncbi.nlm.nih.gov/entrez/q...=pubmed_docsum

http://www.ncbi.nlm.nih.gov/entrez/q...d_AbstractPlus

http://www.ncbi.nlm.nih.gov/entrez/q...=pubmed_docsum

http://www.ncbi.nlm.nih.gov/entrez/q...=pubmed_docsum

http://care.diabetesjournals.org/cgi...full/24/8/1448

http://www.jabfm.org/cgi/reprint/17/2/127.pdf


We've had a lot of dicussion on this topic in the past. Brian, in particular, has very interesting posts on how his prediabetic neuropathy developed, and how it improved with supplementation and strict dietary control.

I believe if this is supected, a four-five hour glucose tolerance test is indicated, with blood draws for both glucose and insulin level every half-hour; one want to see if one has insulin resistance (overproduction of insulin to small glucose challenge, a precursor to impaired glucose tolerance) and also wants to see the feedback loop of insulin/glucose levels, to see if there's dysregulation that would be of concern.

dustofsnow 02-03-2009 07:28 AM

Thank you I will spend a lot of time researching this, because if there is any way I can help myself, I will do it. I am terrified of becoming bedridden or housebound. I am insulin resistant--I have polycystic ovary syndrome. I take metformin, and on the last test my a1c was normal, but it's not always that way.

mrsD 02-03-2009 07:42 AM

Pcos...
 
yes, I have this too.

But in my day, little was done for it.

I am now taking d-chiro inositol (which is used in PCOS patients) and will report in about 3 months on how that is working. This is a new form of regular inositol . Inositol is recommended in some studies, and also by Dr. Jensen Kittley from Obesity's Answer website. She recommends the amino acid taurine with the inositol too.
http://www.obesitysanswer.com/
I have her book and it is interesting too. Her dietary interventions-- The Cell program-- are more restrictive than the Zone, but she claims a high rate of success, too.

500mg 3 times a day of regular inositol, and 1000mg a day of taurine.
Neither is expensive or hard to find. iherb.com is best for all your supplements. Many types to choose from and huge discounts.
The d-chiro inositol I am experimenting with is supposed to be about equal to metformin. I cannot tolerate metformin--gave me acidosis. But d-chiro costs over $100/month... too much for me to recommend here yet. If it reverses my fasting insulin level and helps with the other insulin resistance issues, I will be endorsing it regardless of the cost.

The metformin you know, depletes B12. You should start that right away.


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