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-   -   My intro and history, labs inc. Opinions needed. (https://www.neurotalk.org/peripheral-neuropathy/206021-intro-history-labs-inc-opinions.html)

glenntaj 06-25-2014 06:14 AM

While I would agree--
 
--that the lab results do suggest an ongoing B12 deficiency (and there may be other low B vitamin levels as well), I do think that the autoimmune possibility should be checked out further.

Certainly, B12 deficiency and autoimmune problems often go hand-in-hand ("pernicious anemia" caused by lack of intrinsic factor, leading to lesser B12 absorption, typically results from autoimmune processes), and the chances of having more than one autoimmune process going on are fairly high. You should have the ANA result further checked with more specific tests for type and pattern (if you haven't already) and I would also get a celiac panel (anti-glidain IgG, anti-gliadin IgA, anti-tranglutaminase IgA, total IgA--deamidated forms if you can) and thyroid function panels (TSH, free T3, free T4, antibodies done (if you haven't already).

windypetunia 06-25-2014 06:36 AM

I've had all the further testing run under the ANA, and all comes up negative, so my docs are telling me the elevated ANA is "false positive." I understand this can happen, a certain number of people have it elevated, yada yada. BUT, in light of my symptoms,and the fact that it was 1:160 a few months ago and 1:320 last week, I'm concerned.


Quote:

Originally Posted by glenntaj (Post 1078040)
--that the lab results do suggest an ongoing B12 deficiency (and there may be other low B vitamin levels as well), I do think that the autoimmune possibility should be checked out further.

Certainly, B12 deficiency and autoimmune problems often go hand-in-hand ("pernicious anemia" caused by lack of intrinsic factor, leading to lesser B12 absorption, typically results from autoimmune processes), and the chances of having more than one autoimmune process going on are fairly high. You should have the ANA result further checked with more specific tests for type and pattern (if you haven't already) and I would also get a celiac panel (anti-glidain IgG, anti-gliadin IgA, anti-tranglutaminase IgA, total IgA--deamidated forms if you can) and thyroid function panels (TSH, free T3, free T4, antibodies done (if you haven't already).


mrsD 06-25-2014 06:48 AM

It is not uncommon to have elevated ANA after a pregnancy.
This is the body's reaction to the fetus. Some women get this and it typically resolves with time after delivery. (even my own doctor had this situation).

The ANA can fluctuate in people between elevations and then followed by periods of normal. Doctors know this and typically retest after several months pass.

So far your testing results suggest a macrocytic anemia. I'd follow that path for now, to treat that.

Pregnancy and long term breastfeeding can be stressful on some women, as the nutrients the baby needs are taken from the mother. Human milk, is high in fats, cholesterol and glutamine for the baby's early development of the nervous system and GI tract. There are some prenatal vitamins out there especially for pregnant and breast feeding women.
This is one:
http://www.amazon.com/Expecta-Lipil-.../dp/B001F0RA34

DHA is a long chain fatty acid used to build the cell walls of neurons in the brain and spinal cord.

Some RX prenatals also have DHA in them, but not all.

windypetunia 06-25-2014 06:56 AM

Thank you so much for all your insight. What omega 3 supplement do you recommend? I do have some ground flax that hubby uses in smoothies, and a bottle of flax oil that we use occasionally.

Vaccines-I'm so mixed on this. I know why we need them, and I vax my kids and myself (to protect my kids), but they do terrify me and I think I'll skip as many as possible in the future.

Do you have a methylated b12 and folate you personally like?

Lyme-it's my understanding that the ELISA, which I've had, is the worst test, with the western blot better and whatever Igenex uses the best. I'm thinking of seeing what I need to do to have it run through them. Anyone know?

Heavy metal testing-will my doc look at me like I have 2 heads if I ask this or is it a normal blood test?

Viruses-I don't get cold sores, but have had chicken pox as a child and shingles in my 20s.
.
Quote:

Originally Posted by mrsD (Post 1077843)
I would push the Omega-3's... too much fish can lead to heavy metal issues....so get a good supplement that is a bit safer.

Flax oil is important too.

The vaccines are a problem. We've had people here with reactions to rabies vaccine, the adult whooping cough and H1N1 and other flu vaccines.

Even if your MTHFR comes out okay, I'd do the methylated B12 and folate as insurance since you have had 2 children recently. It takes a while to rebuild after having babies!

You might consider some heavy metal testing.
Also that then leaves LYME. We have a member here who had a relatively new test which he claims is the best:

The links to the new test are in post #2:


If you get cold sores, and/or have had chicken pox...I'd try some l-lysine to see if you are having some Herpes action going on in the dorsal roots along the spine. These viruses activate under stress and illness and cause much grief. One gram a day to start and raise to 2 grams after a week. See what happens.


windypetunia 06-25-2014 07:06 AM

What dose on the methyl b12 and folate? I wish we were taught this stuff in school!

mrsD 06-25-2014 07:17 AM

If you had shingles already.... that suggests your immune system is low...or your dietary arginine content too high. Arginine is an amino acid that signals viruses to activate and replicate. It will trigger Herpes out of dormancy.

Heavy metals include mercury. (along with cadmium, arsenic which is common in the environment, and chromium, and manganese which is an additive in gasoline).
It is a standard test for people with nerve damage symptoms. There are blood tests, urine screens, and hair analysis.

Expecta is made from algae grown in vats and is vegetarian.

Most quality fish oils are purified, and good companies include Carlson's and Nordic.

A standard fish oil has EPA and DHA in it.
This is my EFA thread:
http://neurotalk.psychcentral.com/thread6092.html
My son has ADHD and responded very well to DHA supplements, well enough to discontinue his ADHD medications. Low levels of EFAs in children have been found to lead to ADHD.

The link I gave you above has the NEW lab as of 2012...for you to research that. It is not Igenex. (for the Lyme testing.)

Methylcobalamin is very common now. I've used Jarrow's back when it was one of the only sources. Then Puritan's came out with theirs, and I tested that out (had blood levels drawn with it) and now we are using the Costco brand.

I have just seen methylcobalamin at Sam's Club! Any of those would be adequate and are very inexpensive too.

Methylfolate used to be common then Merck decided to withhold it from OTC sales for several years so RX versions could make more $$. It has returned OTC now, and Solgar was one company that contracted with Merck for OTC sale again. You can buy it at some quality health food stores, at iherb.com
and Amazon.com
http://www.amazon.com/Folate-800-Met...lgar+metafolin

800mcg should be enough for most people.
I think you should start at 5mg of methylcobalamin daily on an empty stomach (no food for 1 hr after)and get retested in 3-6 months. Stop the B12 at least 5 days before testing. If you are over 1000, on that retest you can drop down to 1mg daily if you desire, but you don't have to.

Kitt 06-25-2014 09:39 AM

Quote:

Originally Posted by windypetunia (Post 1077845)
Thanks Kitt, will do. I suspected HNPP based on symptoms, but doesn't it typically result in EMG/NCV abnormalities? I have 2 little ones so I'm really hoping it's not something I've potentially passed on.

Here is a good site concerning HNPP. It can help with many of your questions. Explore the whole site. It is an interesting site.

http://www.hnpp.org/

One point is that CMT has an extra copy of PMP22 and HNPP has a deletion (loss of copy) of PMP22 on the same chromosome where CMT has a duplication.

http://www.hnpp.org/genetics.htm

windypetunia 06-26-2014 09:51 AM

MrsD, I just ordered the methylb12 and folate from amazon. How soon would you think I would see a decrease in symptoms if they are going to work? I am thinking I should wait on major dietary changes, so I'm not confounding the issue with new supplements and diet overhaul all at once.

I don't know what your background is but your knowledge and willingness to help strangers is amazing. Thank you.

mrsD 06-26-2014 10:30 AM

I have sent you a PM....;)

Quote:

Originally Posted by windypetunia (Post 1078336)
MrsD, I just ordered the methylb12 and folate from amazon. How soon would you think I would see a decrease in symptoms if they are going to work? I am thinking I should wait on major dietary changes, so I'm not confounding the issue with new supplements and diet overhaul all at once.

I don't know what your background is but your knowledge and willingness to help strangers is amazing. Thank you.



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