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» LymeNet Flash » Questions and Discussion » Medical Questions » Please Read if you've been sick for years...this may help you

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Author Topic: Please Read if you've been sick for years...this may help you
Bugg
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Hi All-

For those who've been sick for years, I want to pass along something that might help you. It will seem simple but it could be incredibly important...

***You might be deficient, severely deficient in B12, and not even know it

***As many of you know, if your B12 levels are deficient, it can cause a lot of neurologic complications such as tingling or numbness in the hands and feet, weakness, fatigue, depression, muscle aches, joint stiffness, all-over muscle twitching, sore tongue (any of these symptoms could be confused with lyme symptoms)

***Please also understand that A NORMAL SERUM B12 TEST DOES NOT MEAN THAT YOU'RE AREN'T DEFICIENT IN B12 (I wish I had known this years ago)

***A high serum folate level can often mask a B12 deficiency

*** You can have a normal B12 serum level and still test positive for the autoimmune antibodies to intrinsic factor (you need intrinsic factor to absorb B12 from food). Additionally, you can have normal serum B12 levels and still have pernicious anemia. This is where your body's immune system is attacking the parietal cells which produce the intrinsic factor..(you need intrinsic factor to absorb B12 from food)

***As you will see from a review of PUBMED, the most accurate measure of B12 levels is the methylmalonic acid test or an elevated homocysteine test...If these are elevated and you have B12 deficiency symptoms, you are most likely deficient in B12

**As mentioned above, there are antibodies testing you can have to determine if your immune system is attacking its parietal cells which produce the necessary intrinsic factor ....this is NOT an ANA test, but rather, a specific antibodies test

***To date, to my knowledge, there have been no studies conducted on lyme's impact on parietal cells (these are the cells which produce intrinsic factor and gastric acid) which help your body absorb B12 from food...Could lyme be attacking the parietal cells?

***Could lyme patients' immune systems be attacking the parietal cells??

***Inflammation: We know lyme causes inflammation and perhaps, inflammation of the mucosal lining of the gut, is interfering with proper absorption of B12

***Some antibiotics interfere with the absorption of B12 and alter the intestinal flora

***Anecdotally, Ive noticed that some people who get better on this board have done things to heal the gut...fight inflammation in the gut...or absorb B12 (probiotics, Vitamin D, parasite treatment, sublingual B12 or shots)....Maybe some of these measures are having the impact of: calming the inflammation in the gut, calming the immune system, and creating better absorption of B12

Finally, I think it's a dual attack that may be necessary: Fight the inflmmation/modulate the immune system AND obtain proper nutrient absoprtion (this is why I take higher doses of Vitamin D plus the B12)...

Even though it's from the UK, I think the following link does a good job of summarizing some key points re: B12 deficiency and pernicious anemia;

http://www.patient.co.uk/doctor/Pernicious-Anaemia-and-B12-Deficiency.htm

(hope this helps someone).....

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wendihk
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I've been giving myself IM shots of B12 weekly and it helps me feel 100x better.
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Hambone
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There is a great book about this titled, "Could It Be B-12?"


I think everybody should get a uMMA and homocysteine test.

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Cockapoo1996
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What does this mean?

***A high serum folate level can often mask a B12 deficiency

My blood test said Folic Acid >24 with reference of >5.38 being ok

Then I see Vitamin B12 measured 949 HI with reference range 211-911.

I thought these levels were good. Now I am confused.

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Bugg
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Hambone-Did you have abnormal UMMA or homocysteine when you were tested?? Yes, I've heard that's a great book...thanks for reminding me about it....
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Hambone
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quote:
Originally posted by Bugg:
Hambone-Did you have abnormal UMMA or homocysteine when you were tested?? Yes, I've heard that's a great book...thanks for reminding me about it....

Nope. Mine was normal.
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Bugg
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Cockapoo-The literature doesn't suggest that just because you have a high folate level that you have a B12 deficiency. Rather, it's saying it can potentially mask a deficiency due to the 'folate trap'.

(In those with B12 deficiency, then, the higher the level of folate, the more likely the person would be to potentially have neurological impairment rather than anemic impairment...hope this makes sense to you...If not, there's lots of info regarding this in Pubmed....)

Hope this links helps to clarify:

http://www.dach-liga-homocystein.org/EN/Fachinfo/folsaeure/falle.htm

[ 07-15-2011, 07:10 PM: Message edited by: Bugg ]

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Cockapoo1996
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Thanks Bugg. I am always wishing I had taken biochemistry in college.
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sbh93
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I am b12 deficient and can vouch for improvement by addressing just that and leaky gut and low magnesium. That was the first thing we did while waiting for lyme test results. My migraines decreased in frequency. My GI pain decreased.

--------------------
------------
It took 20 years to find out I'm not crazy.
New bite in 2010 pushed my body over the edge. Positive for lyme, babs, bart, and myco.
I am not a doctor and happily offer only my own opinions.

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Razzle
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Vitamin B12 deficiency can also lead to diminished mental function, loss of hair, loss of sense of taste, increased chemical sensitivities, and a bunch of other issues. Nerve mylin cannot be repaired without B12, so it even can reverse some "MS-like" symptoms.

Some find their symptoms "flare" a little when they first start to supplement with B12, but usually this is due to healing of the nerves and it should pass after a bit.

Yes, Lyme can cause inflammation of the stomach, thereby preventing the proper production of Intrinsic Factor. Lyme also can dysrupt gastrointestinal motility, which can also interfere with Vitamin B12 absorption. And Lyme can cause inflammation in the small intestine where the B12-Intrinsic Factor combination is absorbed, thus preventing absorption of oral B12.

There are different forms of B12, too. So if one form (the most common/least expensive is Cyano-cobolamin) doesn't seem to help, you may need to switch to a different form. Compounding pharmacies can make the different forms in an injectable version if the cyano-B12 doesn't work.

Some rare individuals seem to react negatively to Cyano-B12. This may be due to difficulty detoxing the Cyano- part of the B12 molecule. These individuals should use methyl-B12 or hydroxo-B12 instead.

Some doctors recommend supplementing with multiple different forms of B12, also...esp. those familiar with Methylation issues.

B12 does help to support methylation, which is a very important detox enzyme cycle often over-taxed in those of us with Lyme/co's.

Additionally, some have observed that Vitamin B12 supplementation can help decrease gastrointestinal inflammation.

--------------------
-Razzle
Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs.

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twicebitten
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yes, lyme can cause parietal antibody upset. I have that and I can not absorb b-12 through food, or pills. It caused neuropathy and neuro said it would have eventually killed me had I not got back on b-12 injections. It starts with the peripheral nerve damage and moves closer and closer to the brain and eventually your nerves that the brain uses to tell you to breath are affected and you die.
I learned the hard way. Only when another neuro doc did a ton of bloodwork did they find this very thing (parietal antibody) and he didn't even notice it in the many pages of results but when I took it to another doc, she found it and began the b-12 injections.
I had previously been on b-12 injections from my pcp who noticed I had low levels. That was all she could ever find wrong with me. Then a GI doc told me to stop them, and the rest, you know..
Too many specialists, not enough common sense..

--------------------
One day at a time

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kelmo
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Anyone pursuing a vegan diet, like my daughter, cannot get B-12. B-12 seems to only be found in meat.

So, she has to supplement.

My question..how much is too much? If she takes a sublingual every day, she feels ill. Once or twice a week seems to be okay.

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twicebitten
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must be different for everyone. I need to take 1 sublingual a day. I often think about adding a shot once per month to it. I'm not sure I'm getting enough. I'm going to ask at my appt. on Tue. Thanks for the reminder

--------------------
One day at a time

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sickofsick
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Could a HIGH Vitamin B12 test be related to this? My daughter's test was 3071 with a range of 180-914. Family doc said stop supplementing. LLND said folic acid deficiency.
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Bugg
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Wow, there are so many helpful and smart responses to my post...Thanks so much to everyone for sharing your insight...

I'd like to respond to a few points/questions:

1) I have also heard that the Jarrow sublinguals are very good....

2) Recent studies suggest that sublingual methyl-B12 is just as effective in correcting B12 deficiency as injections (I'm not saying it is..I'm just making others aware that a number of studies recently reflect this)..

3) How much B12 can you take on a daily basis? As most of you know, B12 is stored in the liver...I could not find any studies that show that excess B12 is harmful or that there is a limit on consumption....One thing to keep an eye on however, is that when you start consuming larger levels of B12, your body needs more potassium....If you're prone to low potassium levels, I wouldn't supplement B12 without doctor supervision....

4) As stated above, B12 can really impact your mental state and cognitive function as well....It has helped my depression so much....Even though I was only taking a low-dose antidepressant, I just wasn't responding to it (even if I bumped up the dose or tried others)...With the B12, it's like a light has been turned on...Also, my mom who was recently found to be deficient thought she was in the beginning stages of senility as she couldn't remember anything....Since she's been supplementing, she's amazed at how sharp her memory is now...

5) For those supplementing with B12 who have been deficient, it may really NOT be pleasant when you start. Here are some of the reactions I've had: intensification in tingling in hands and feet, intensification in pulsation of nerves, flair in muscle twitches, tightness in the shoulders/neck, flairs of anger/frustration....Apparently it can take some people months to feel better on B12....

However, some positives I'm already noting: less daily aching pain throughout my body, less depression, sharper vision (my eye doctor was so concerned at each yearly appointment because my eyes seemed to be deteriorating and he couldn't understand why), sharper cognition

****Please note also that you may experience some 'brain fog' when starting the B12 as well....

Questions for you guys:

1) Does anyone think B12 (even if you're not low) can be used to heal the toxic damage to nerves from lyme? (I know there are some studies where B12 was used to help the nerves of diabetics even though they weren't low in it)...Thoughts on this????

2) For those who take B12, even sublingually, along with antibiotics, do your doctors tell you that you're still utilizing it? I just ask this because, as you know, B12 is stored in the liver and the liver is one of the main processing mechanisms for abx...


3) Melindacf--Did your neurologist think that the lyme caused your own immune system to attack its parietal cells? What symptoms does the B12 help you with?


4) For those who feel better on B12, can you provide a list of symptoms it seems to help you with....

Thanks to all!!!

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Bugg
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Anyone else feel like responding? Thanks!
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dan67
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Why does B-12 make me feel like crap?
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Bugg
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Dan67- If you're deficient in Vitamin B12 and/or have nerve damage, it can make your nerve pain flare when you first start taking B12.....Initially, some people who've been deficient, will feel sleepy on starting B12 injections or sublinguals....Then, it can move into causing your nerve pain to flare...

I've found that if I try to take too much B12 too fast, it will intensify the nerve pain...It can also increase my brain fog....If I slow down on it, it's much less intense....Those with pernicious anemia or B12 deficiency often report it can take 3 months before you feel better.....

Make sure you get enough potassium as our body will need more once you start B12 ...

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Haley
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I just had a blood test for B-12 this morning. Are you saying that it is unlikely that this test would be accurate? Is it possible that this could give me the correct levels of B12 in my body?
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twicebitten
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Bugg,
The neuro. never said "lyme" caused anything as the mere mention of the word seems off-limits to either of them. I thought it was probably the cause as I never had any issues with B-12 prior to the lyme stuff. I had "low iron" in my blood since I can remember but not B-12 or B-anything. No specialist I've ever seen has wanted to discuss lyme or what it may have caused. Well, except llmds. I can't remember for sure but I think my 1st llmd said lyme probably caused all or most of my vitamin deficiencies.
B-12 really helped with my burning sensation in the legs, arms. It helped with the nerve pain, although I still have it everyday, probably not as bad. It must have helped my migraines over a longer period of time though.
It's very hard to tell what med helps what symptom when you get meds thrown at you so often. Plus that's been probably 5 years ago and my brain works only sporadically...

--------------------
One day at a time

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Bugg
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Haley-

I'm saying that the medical literature says you can't always rely on the B12 serum tests to determine a B12 deficiency. More precise tests for levels of B12 in your body are the MMA test and the test for your homocysteine levels. If your levels are 400 or less via the serum B12 tests, I would be highly suspicious of B12 deficiency. If you want confirmation, you might pursue the MMA test and the homocysteine tests. Also, please know that if you are taking B12 supplements before your blooddraw it can give you a false reading of your B12 levels....

Quite simply, there have been people with normal B12 serum levels who found out they were actually B12 deficient by pursing the MMA tests and the homocysteine tests....

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Bugg
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Melindacf-

Thanks so much for your response...I really appreciate it...

Yes, I can relate to the 'taboo-you're-a-nut' reaction you get from doctors when you mention lyme...especially in the South....

Since you mentioned that you had pernicious anemia at one point, did you ever check out the Pernicious Anemia Society's website? Lots of great info there about PA. I, frankly, other than testing positive for antiparietal cell antibodies, wouldn't know how anyone could distinguish B12 deficiency caused by PA from lyme....So many of the symptoms overlap...Ugh!

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Jamers
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Very good thread.

Bugg-'taboo-you're-a-nut' is what I got for a whole year but this year doctors have seen an increase in LYME here in NC!!! An aquaintance is being tested and his doc said there are a lot of people with it this year. So, where were all these people last year when I was suffering with no diagnosis for a year??? Bunch of crap, Lyme is definately around here.

--------------------
Diagnosed Pos. Lyme Nov. 17, 2010, Igx.
Pos. Babesia Duncani March 2011, Igx.
Clinical diagnosis for Bartonella

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Bugg
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Hey Jamers-

Thanks so much for the feedback...I live in TN where they are still VERY clueless about lyme...Some of the researchers are finally conducting a study here to see if wild turkeys may be bringing in/hosting borrelia in TN.

I'm aware there have been an increase of cases of lyme in Va and North Carolina. I've been trying to find out from Va's and NC's Health Depts what hosts they think are spreading lyme....is it mice....???? I can't get any answers as I would like that pass that info along to our researchers in TN...

Do you know the source of the spreading in VA, SC, and NC???

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Bugg
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Hey Guys-

Here's a new medical abstract from Yale that illustrates the point I'm raising....In this abstract below, you will see that these diabetics with peripheral neuropathy actually had "normal B12 aka cobalamin levels" but still suffered from neuropathy. When they measured their MMA levels, many of these were high. Upon treatment with B12, it helped their neuropathy....

Since there are not studies with lyme patients, how do we NOT know that we with neuropathies don't suffer from "functional B12" deficiency???????

http://www.ncbi.nlm.nih.gov/pubmed/21421801

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twicebitten
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Bugg,
I had never been to PA website. I don't remember exactly all the diagnoses during that time frame. In all actuality there were so many I couldn't keep up. The MS one is the one I looked into the most as it was most frightening to me at the time. (besides the lyme of course)
Yes, here in TX lyme is a dirty word in the doctors office.
I was at the pain clinic this month and the NP or PA or whatever she is I see there asked about my llmd appt. that was coming up. She wanted to see if he was going to change meds or something..I forget. I told her how difficult it was to get help for lyme here and mentioned it was "controversial" to which she did not reply but shook her head and looked at me like she preferred not to comment..just such crap!

--------------------
One day at a time

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twicebitten
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Bugg,
I had read at one time that viruses and bacteria can cause neuropathy as well. I was curious about mine as my B-12 had been corrected and yet I still had symptoms. Of course it could be that I will always just have permanent damage. The EBV that causes me so much troubles evidently can cause or at least it's thought to cause PN.
Who can tell what causes what, or what is a side effect of what? so much confusion.

--------------------
One day at a time

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Razzle
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If B12 deficiency goes on for too long a period of time, most MD's believe that the peripheral neuropathy from the deficiency may be permanent. I don't believe this, as it most likely just takes a longer period of treatment with B12 at a higher dose, and possibly some additional supporting supplements, but I am almost certain that pretty much any damaged part of the body can be repaired given the correct treatments and raw materials (nutrition).

--------------------
-Razzle
Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs.

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Bugg
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Melindacf--Have you been checked for H. pylori? Did you ever travel anywhere like Inida, for example? The only reason I ask you this is because I had a friend with EBV for years who the doctors finally discovered had H. pylori from a trip he had taken to India. The H. pylori, of course, interfered with his absorption of B12 and he was diagnosed with pernicious anemia eventually. He eradicated the H. pylori with antibiotics and treated with B12 shots....he no longer has any EBV issues but has to take B12 shots routinely to stay well...

Razzle- I think those are some great points....I think for a lot of lyme patients taking B12 can initially increase sleepiness and increase nerve pain...Therefore, it can be discouraging trying it...However, it's my understanding that, with time, the sleepiness and intensification in nerve pain tends to calm down....maybe around 3 months...Is that your experience as well??

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twicebitten
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Bugg,
yeah, I think I have been checked for H pylori. My daughter had it though and took a supplement my doc recommended and is over it I guess. He never mentioned it again. I think I've been checked a few times. I've been on several abx that probably would have cleared it anyway. Never been to India or anywhere though. Thanks for the thought.

--------------------
One day at a time

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Bugg
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I just wanted to add further clarification to a post above re: folate. B12 deficiency can often cause two things: anemia and neuropathy. If you have a higher folate level it can 'mask' B12 deficiency by making your panel bloodwork tests pertaining to detection of anemia look normal. Therefore, you could still be B12 deficient and have slowly progressing neuropathy and not necessarily tie it to a B12 deficiency.....Hope this helps....
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