Response to the email I sent to Suzy Cohen re Vit D levels in Lyme

As those who have posted on some of my recent threads know, I opted to follow the advice Suzy Cohen provided in one of her health newsletters and asked my doctor to not only check my 25-OH Vitamin D level but, my 1,25 di-OH Vit D level. (the former is the inactive level most commonly run by US doctors and what often prompts Vit D supplementation....the latter is the active level).

http://suzycohen.com/articles/vitamin-d-testing-should-be-more-thorough/

My 25-OH Vit D level came back at the somewhat expected 58 (I get my level checked every 3 months and work at maintaining it between 50-70 which the Vitamin D Council advises as an optimal range).

However, both I and my doctor were floored to discover that my 1,25 di-OH level came back at 187.5 (10-75).

My doctor was thinking sarcoidosis even though I'm asymptomatic and I wasn't liking the idea of her suggested chest CT scan.

Now, Suzy mentions in her article that Lyme can cause elevated 1,25 di-OH levels but the only information I could find online was Dr. Klinghardt's Lyme treatment plan that also mentions this....but in association with sarcoidosis (80% of sarcoidosis patients test positive for Lyme).

I opted to email Suzy with a request for medical references and received the following prompt reply:

"My name is Sxxx Bxxx, a specialist in clinical nutrition and work with many well respected LLMD's. I am also a very good friend of Suzy Cohen.

This has been a general observation as well as one of the criteria for helping to identify hidden lyme in clients and doctor's patients.

We have witness as one treats lyme the vitamin D 1,25 will be lowered.

When giving vitamin D when there is an altered 25 OH to 1,25 ratio has been shown to make it more difficult to treat the lyme with antibiotics.

As vitamin d 25 levels are lowered then the 1,25 will also come down allowing the antibiotics to work more effectively.

Just several weeks I ago I found hidden lyme in people which have been to other doctors who told them they did not have it.

Once I saw they fit into the specific criteria I look for, I had them order the Igenix test to confirm. All of them where lyme positive.

Please keep in mind medical reference plus real world results can some times be very different. I hope this information was helpful."

While the information *is* helpful, it conflicts Suzy's comments in her article about Lyme wherein she states not being a fan of the Marshall Protocol:

http://suzycohen.com/articles/lyme-disease-and-bartonella-more-common-than-you-think/

Now, the Marshall Protocol incorporates more than stopping Vit D supplements and I'm waiting to hear back from SB for clarification on Suzy's position.

Dr. Mercola shares Suzy's thoughts about the Marshall Protocol:

http://articles.mercola.com/sites/articles/archive/2009/03/14/clearing-up-confusion-on-vitamin-d--why-i-dont-recommend-the-marshall-protocol.aspx

All of that said, I hope my LLMD is aware of these nuances associated with Vit D levels and can guide me accordingly.

As of right now, my GP insisted I stop supplementing. Thank goodness I see my LLMD on Thursday.

Comments are welcome from others, of course :)

Ironically, the first time I had my Vit D (25-OH) level checked, it was 78 without supplementation. That was back in 2008.

By the time I started treatment for hypothyroidism in 2010, it had dropped to 53. I've slowly increased the dose since then as labs dictated and was taking 4000IU (which is not alot) at the time of my most recent labs.

The comments shared in SB's email to me mirror the Marshall Protocol. Unfortunately, when I questioned him on it, SB would not comment further and told me he was available for consultation lol


Actually, we're not supposed to judge our Vitamin D status based upon the active level (believe it or not).

It fluctuates too much and was confirmed by that link to Dr. Mercola's site I supplied earlier.

Here's some other interesting info from his site which describes the fact that the 1,25 di-OH active level of Vitamin D is actually a reflection of our calcium status:

http://articles.mercola.com/sites/articles/archive/2015/02/01/daily-vitamin-d.aspx


Also, you'll find posts on here by Lymies who report a low 25-OH level and a high/over-range 1,25 di-OH level. Their LLMD's have declared them deficient and started them on Vitamin D supplements.

Thank God for LLMD's!!!

Post Edited (cd3764) : 2/2/2015 1:26:18 PM (GMT-7)

Thanks for sharing cd3764! :)

I find it very odd that Suzy Cohen's associate gives you info that conflicts with her claims. Then, they refuse to reconcile her view without charging for a consult. That seems very odd to me.

cd: My 5 year old daughter tested 99, so she is about 25% higher, whereas my other 2 kids tested low. Go figure! It really doesn't matter what I feed them, it is all about how their bodies are braking it down.

I just checked my lab work...and here in Canada they won't test for Vit. D....unless you pay out of pocket (even though all other lab work is covered)...and they only do one:
25-HydroxyvitaminD - Then it says: "This is the test of choice to assess Vitamin D status when indicated.......Total 25-OH Vitamin D represents the sum of 25-Hodroxylated Vitamin D2 and Vitamin D3 species.

Ranges: units = nmol/L
<25 deficient
25-74 insufficient
>200 toxic

My first test was 73
My second test 95

I thought I was getting active Vit.D tested - but I think this is the inactive???

Girlie,

You had the right Vit D test done and, yes, it's the inactive level.

Throughout my recent research on Vitamin D, it was clear that our kidneys tightly regulate the production of the active form of Vit D.....and they obviously need appropriate amounts of the inactive Vit D to do this.

Yes, some Lymies (such as myself) have elevated active Vit D levels but the hormone is produced by tissues other than the kidneys as part of an inflammatory response.

Interesting, Razzle and very helpful!!

I've supplemented with Vit D without issue so that provides another level of comfort to me in regards to my GP's sarcoidosis concerns.

I have absolutely no symptoms of sarcoidosis and I've learned that's how it can be for some people. It can also spontaneously resolve. For symptomatic people, the treatment is steroids. We all know steroids are contraindicated for Lyme.

So, even if I did have sarcoidosis, I'd be refusing treatment.

I just started LDN last week and it shows promise for sarcoidosis in addition to Lyme, hypothyroidism and other health conditions.

My GP will be hearing about all :)

I, too, would like to understand the calcium-active Vit D status connection a bit more. In fact, when discussing my elevated active Vit D level, I asked my GP if I should start supplementing with calcium.

My calcium level is within normal range....my only Dexa scan was 6 years ago and my bones were in good shape back then. A lot has happened in those 6 years, however. I developed hypothyroidism after going into remission from Graves'....and I got Lyme ;)

One useful tidbit of information I gleaned is the need to have the iodized calcium blood test. This measures the calcium that is available for the body's use. My GP has always been running the serum calcium test which does not reflect the true status of calcium in the blood.

http://medind.nic.in/iaf/t05/i2/iaft05i2p158.pdf

I also learned that the blood for the active Vit D test must be frozen for transport and Quest is the only lab that does this.

Knowing this is of no benefit to me since not freezing the blood usually results in artificially low levels lol

I can't wait to chat all of this up with my LLMD.

Post Edited (cd3764) : 2/2/2015 6:01:39 PM (GMT-7)

This kinda scares me. I have all those symptoms, fluctuating D levels, and tested positive for lyme. But I did get two chest X Rays when I first started having chest pain before I knew I had lyme and they were clean. Does that rule it out?

I'm set up for D 25 OH testing at end of this month, (along with a raft of other tests),
and I last tested at 40 for Vit D and am taking 4000 iu a day.

Am I doing OK? I tried to read this thread but I got confused and a headache. Bad day for assimilating I guess...

whew! OK, so I'm creeping towards the zone on D levels anyway.

I can't even get the 1,25 Vit. D test locally. I guess I could find a site and order a test kit from the U.S.

There's so many things that I wonder if i should test for.

Is the active Vit.D. test necessary - if the inactive is in range?

aghhhhhh.....all this questioning of lab tests...is making me crazy.

I already have a long list of labs to test - Thyroid antibodies, recheck: cortisol, DHEA, T3/T4/FT3 estrogen, progesterone, testosterone, B12, D 25 OH.

Do I need to add the 1,25 D test to my list?

Thanks, CD - one less thing to worry about, as my 25-OH level is good.