I just got my latest 1,25 and 25OH D results back and I am freaking out a bit:
D25OH: 21.7 (LabCorp) D1,25: 79.4 (LabCorp)
Two months ago, I had both D types measured and the results were quite different (albeit D25 was a different lab):
D25OH: 52 (Quest) D1,25: 45.4 (LabCorp)
I've been supplementing D3 at least 1000-3000IU/day for the past three years. Several months ago I began supplementing 5000IU/day upon the advice of my LLMD. The only other change I've made in the past few months is that I've been supplementing K2 and have spent time in sun (vacation in Florida, gardening, running, etc.).
I've zealously read everything I can get my hands on about the Marshall Protocol, and although I have a PhD, I can't for the life of me claim to understand all the science cited by the followers or the naysayers. And although I've been supplementing D, I've had nagging feelings Marshall is onto something and that I should resign myself to life as a cave dweller. Admittedly, as a very outdoorsy and social person, I am scared sh*tless that I'll have to follow such a socially prohibitive protocol in order to fully heal.
Given my latest D labs, Marshall would say I'm a prime candidate for life in the dark underworld. Also, I have other symptoms of what he and his posse call "hypervitaminosis D" such as a constant metallic taste, insomnia, twitching, fatigue, painful big toe, etc.). In addition, I've recognized that in the past 10 years or so I tend to get chills and fatigue after sun exposure.
My LLMD doesn't know much about Marshall other than the Mercola critique he read. He is definitely of the mind that higher 25DOH is better.
I should say that, overall, after 6 months of treatment with oral antibiotics and Lexapro, I am feeling much better. I work full time, run/cycle/walk/lift most days, go to social events (though don't drink like I used to - no more life of the party!). Definitely not 100%, but human again.
So, my questions are:
1. Is it possible that I am only feeling better because I am "masking" my symptoms with Vitamin D (a steroid) and Lexapro?
2. Are there other blood tests I should get, such as Calcium and/or ACE, that might indicate my suitability for adopting the MP?
3. Should I just not worry about my D levels, as high D1,25 could just be a *correlate* of infection and not a cause?
Sorry for this long-winded post. I really appreciate any insight!
Lynne
-------------------- Increasingly ill over past 10 yrs; treating since October '08. Posts: 180 | From Philadelphia, PA | Registered: Oct 2008
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posted
Your latest D results are quite extreme. I had numbers like that too, and like you had hypervitaminosis D symptoms.
When I stopped D intake, the hypervitaminosis D symptoms such as headaches and tooth breakages greatly subsided within a few months.
IMO the MP is on to something for those with disregulated D. What they told me to expect with treatment has come true for me. It has been the only treatment to produce gains for me.
The MP is not an easy, quick cure, but I don't believe there exist any for lyme, at least not yet.
Posts: 727 | From USA | Registered: Mar 2006
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posted
Thanks for your response, dguy. I've seen your comments on other Vitamin D threads and have been interested in your progress - sounds like you're doing pretty well on MP!
I am so torn about it, as it seems so difficult and I don't have an LLMD who buys into it. Are you following it pretty much to the letter?
-------------------- Increasingly ill over past 10 yrs; treating since October '08. Posts: 180 | From Philadelphia, PA | Registered: Oct 2008
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posted
I know there have been questions with regard to the realiabilities associated with D labs. I am not a medical professional, but the difference in D values over a couple months seems a little hard to believe. If it were me, I would want to re-check the Ds before proceeding; and I would stick to LabCorp for all D labs since it is better with the 1,25 D.
Then there is the question of to MP or not to MP. I think the Marshall folk are on to somethin'. I am on a bit of a modified MP, which I have described in brief before. PM me if I you want more detail.
-------------------- enjoy the day.
-jmb Posts: 208 | From Maryland | Registered: Dec 2008
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posted
As you probably know, there are many treatments Out There. Most involve abx at their core, and in this regard the MP is no different. What finally led me to choose the MP was a detractor's web site. At that site, the detractor had posted an "MP patient success rate" graph (this has since been removed). The graph showed the cure rate increased in proportion to the level of the patient's initial vitamin D disregulation. Where the 1,25D/25D ratio reached 3:1, the graph had risen to something like 80% success.
Like yours, my D ratio was more than 3:1, but the chart didn't extend out that far. Since the graph was rising, I figure the success rate exceeded 80%. It's one thing to read glowing reports from a promoter, but when even a detractor agrees, well, that was significant to me. Another element was I had independently discovered the role of vitamin D for me in this illness before I had even heard of the MP.
Be aware that the messages you see at the MP sites are purged of negative comments. While this concerns me, I think I understand why it is being done. Search this board for MP-related posts by Lonestartick, with whom I largely agree, and who writes more eloquently than I. For example http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/80052#000004
Yes, I follow the MP guidelines to the best of my ability. Best thing about the MP is that you adjust treatment to the pace that fits for you. IMO its low-dose abx approach is safer than big doses. Worst thing is the MP is a long process, and you need to minimize light.
Posts: 727 | From USA | Registered: Mar 2006
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Cass A
Frequent Contributor (1K+ posts)
Member # 11134
posted
Dear Landerss,
I had 25D and 1,25D range like yours. I had gotten more symptoms since I'd started supplementing with Vit. D, so I stopped doing that!
I also stopped Vit D foods, got the NoIRs, and restricted my light intake.
Due to other factors, I've not been able to do the full MP, however, I believe these actions have helped me with Lyme.
Last time I tested, 25 D was below 10 and 1,25 D was 38.
I still hold out for doing the MP, if other, less restrictive actions don't result in a full resolution.
Best,
Cass A
Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007
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posted
Thanks so much for your replies, you guys. Really helpful. Gotta love this board!
So, dguy, you didn't get better at all on traditional (ILADs-type) treatment? I *am* getting better on it, and so it's not so clear to me that I should do something as drastic as full-blown MP. But I will stop the D supplementation.
Cass, are you taking Benicar? I'm not sure, but I doubt if my LLMD will prescribe it for me, as the MP is not something he follows. Has dropping D foods and restricting light helped you feel a good bit better?
Lynne
-------------------- Increasingly ill over past 10 yrs; treating since October '08. Posts: 180 | From Philadelphia, PA | Registered: Oct 2008
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
You do need to watch your calcium.
It is very important and can cause all kinds of
problems that are related to the D but much more
dangerous.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
I have been on the MP for about 7-8 months. My D levels were high like yours. I am in phase 3 now and first 2 phases brought me excellent results.
having some trouble in this phase 3 and can see it will be a long road.
I have been through ILADS treaments too and did get good results but platued. Then went all herbal and platuead again.
I have researched and researched and researched and employed the help of some scientific, clear minded friends to help me research as well...in doing so I have concluded, personally, that MP is on to something and has great science behind his theories.
I do believe that as the study continues and as research is continuing in Borrelia there will be something to come to light to help and I do believe that MP is the closest to it.
I still applaud LLMD's work and think it is done, for the most part and for most of them, with the best intentions but I do believe that MP is the "better" approach out there right now.
I am in a career that requires me to be outdoors often so I have made some adjustments to help in this - I wear my glasses, I tinted my windows, all of them including the front one - there is a product that is used on store fronts to protect displays that can be added to a front window, that is what I did.
I use 70SPF with helio-plex sunscreen all over my body before I dress and use an umbrella if outside for an extended period of time...so far my D levels have maintained down.
I just do things a bit different and smarter with more awareness...
It isnt the most fun but I do belive it is the most proficient way for me to still function, make a living and move forward to health and vitality.
Someone stated they do a "modified MP" and from everything I have read there is not a sufficient modified therapy of MP to get the results, IMO.
Another benefit has been less cost....
It is hard but so far well worth it and best results to date...
Good luck and follow your heart but follow the science in whatever you do! :-)
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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posted
The MP was the first abx treatment I had tried, so I can't say if other treatments employing abx also would have helped.
Many (most?) other abx-based treatments use huge doses compared to what I take. IMO large doses create more risk of complications than lower doses, especially when research indicates both approaches must be continued at least 18 months to minimize chance of relapse.
Posts: 727 | From USA | Registered: Mar 2006
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posted
I was a MP "failure", kicked off the site after almost 2 years because I complained about my lack of progress, and generally feeling much poorer after 2 years out of the sun.
I saw no results from MP, and my personal opinion is that it may be too gentle for a chronic Lymie like me.
However, I do believe there is something to be said for reducing Vitamin D levels. Prior to MP I took large quantities of abx with virtually no reaction or result. On MP, I had the anticipated strong herxes on small quantities of abx. And now, after almost 2 years off MP, I still maintain strong reactions to abx, I think because my D numbers are now way down from a couple of years ago.
In 9/08 they published some results. Lyme was not a reported disease. My dx was initially MS so that is the category I was included in. Of the 4 MS patients, 1 reported some progress after 1+ years, 1 reported some progress after 2+ years, and 2 reported no progress at all after 1+ years on the protocol.
Posts: 252 | From NJ USA | Registered: Mar 2004
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posted
I was a MP "failure", kicked off the site after almost 2 years because I complained about my lack of progress, and generally feeling much poorer after 2 years out of the sun.
I saw no results from MP, and my personal opinion is that it may be too gentle for a chronic Lymie like me.
However, I do believe there is something to be said for reducing Vitamin D levels. Prior to MP I took large quantities of abx with virtually no reaction or result. On MP, I had the anticipated strong herxes on small quantities of abx. And now, after almost 2 years off MP, I still maintain strong reactions to abx, I think because my D numbers are now way down from a couple of years ago.
In 9/08 they published some results. Lyme was not a reported disease. My dx was initially MS so that is the category I was included in. Of the 4 MS patients, 1 reported some progress after 1+ years, 1 reported some progress after 2+ years, and 2 reported no progress at all after 1+ years on the protocol.
Posts: 252 | From NJ USA | Registered: Mar 2004
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Cass A
Frequent Contributor (1K+ posts)
Member # 11134
posted
If I were you, I'd definitely stop taking any vit D supplements, as your reaction shows you clearly have a disregulated Vit D response.
That's my opinion.
It's what I did for myself, and I had high D 1,25 numbers like yours. Taking the preliminary steps--no vit D rich foods, NoIR glasses, SPF 70 sunscreen, using k-cream, lowered indoor lighting--definitely helped me.
Best,
Cass A
Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007
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1. Is it possible that I am only feeling better because I am "masking" my symptoms with Vitamin D (a steroid) and Lexapro?
** Could be. But it doesn't sound likely. First of all you're improving, and according to TM, with these numbers going the way they are, you should be getting worse. Also, you mixed labs for the tests, and over the last year Quest has recalled many of their 25-d test results for coming in too high. So it may be that the original 25-d test was not as high as it looks. Now let's try to interpret those tests as TM and disciples would, and see if it makes any sense. For the first test with your 25-d at 54 and your 1,25-d at 45, a near normal reading the world around, they would have said that the 25-d was dangerously high. They would have told you that this high reading was causing immune suppression, which may have been making you "feel better." But that your 1,25-d at 45 was high, causing rampant inflammation and resulting in disease symptoms. Okay, maybe. The only problem is that your 1,25-d numbers have moved much higher, which according to their theory should then be making you feel like hell -- much worse. And your 25-d has dropped considerably, which, also according to theory, should be making you feel worse as the immuno-suppressive effects are falling away and the immune system supposedly is kicking in as the 25-d drops in value -- resulting in herxing (or, rather, immune-pathology). So, theoretically, you should be doing worse. Much worse. But you're doing better. Humph! Your second set of numbers would indicate a MP candidate, yet when you look at the clinical picture of improvement, and compare that to what they say is actually happening, or should be happening, with these tests, there is a pretty big disconnect. It does not make much sense. If you are improving, I would keep going with what you are doing.
2. Are there other blood tests I should get, such as Calcium and/or ACE, that might indicate my suitability for adopting the MP?
** Calcium and PTH are indicators of 1,25-d values, but I don't remember the values now. It may be a good idea to retest, and try to figure out why the numbers are where they are.
3. Should I just not worry about my D levels, as high D1,25 could just be a *correlate* of infection and not a cause?
** It could be that the tests are wrong. Or it could be that your body is converting 25-d into 1,25-d in order to: make antimicrobial peptides that root out intracellular infection, along with additional anti-inflammatory cytokines to knock back the resulting inflammation. This supposed d dysregulation seems to be holding true for many, but not all, sarc patients. But on the Lyme patients the results have not been nearly as good, and response to therapy has been much worse. Remember, *every* d researcher out there disagrees with TM, which doesn't mean he can't be right, but it makes it less likely and places a demand for a load of good science to prove his point -- and so far there has been no science to PROVE any of this. None. If you are improving, I'd keep going.
If it ain't broke and all that ...
Posts: 845 | From Eastern USA | Registered: Jul 2006
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posted
You guys are terrific - thanks so much for all the thoughtful input! You've given me much to chew on.
I think what I'll do now is stop supplementing D for a bit, continue on the same path with my LLMD-prescribed antibiotics and supplements, and see if I notice any changes.
I have to say, I haven't taken any D nor been in the sunshine for the past 5-6 days, and I do feel a little more achey in my neck and shoulder...but who knows??!
Gracias, Lynne
-------------------- Increasingly ill over past 10 yrs; treating since October '08. Posts: 180 | From Philadelphia, PA | Registered: Oct 2008
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