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Nikki
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Posted: Wed Aug 24th, 2005 00:35 |
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My sister has had many undiagnosed medical problems for years. I suggested she get her D-metabolites tested a few months ago and they were sky high. Her 1,25D was around 100 pg/ml.
She's now told me all her symptoms are significantly better. She told me she was prescribed Diflucan for about 4 weeks, then Nystatin for 3 weeks, then some Chinese herbal meds. About 1.5 weeks after starting the Diflucan, she started to feel great. I just got off the phone with her and she told me she hasn't felt better in decades. Here are some of her remarks:
It helped my hypoglycemia completely. I had a whole bunch of other problems along with it that got better such as fatigue, acid reflux, stomach acidity that was excruxiating, itchy legs, constipation, gas, bloating, diarrhea, food sensitivities, heart palpitations, acne....I think those are the main ones....I took Diflucan for about 4 weeks.
This article suggests that antifungal treatment can lower 1,25D levels. Other abstracts I've read at PubMed also state that the Ketoconazole also seems to reduce the 1,25D. Here it says that Fluconazole (Diflucan) is sometimes prescribed to treat fungal (candida) infections. It directly inhibits the enzyme which catalyzes 25-D to change to 1,25-D and the resultant hormonal rebalancing can be profound. I know some of these antifungals shouldn't be taken for too long.
It also says that 'yeast medications' only temporarily help the condition - again a sign of misdiagnosis. How long is temporary before one knows if it's a misdiagnosis or not? My sister told me she has been feeling significantly better for 2-3 months now and she started the antifungal meds only a few short weeks prior to that.
I don't understand why she would be feeling so well with such a high initial 1,25D and so quickly after her treatment. Any insights?
Thanks.
Eurico
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Sarcoidosis Start MP Apr04 - Oxycontin fentanyl-patches Welbutrin Effexor Clonazepam Iron Calcium Progesterone=1mg daily; Estrogel=1.25g daily (25D=4ng/ml - June/09)
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Dr Trevor Marshall
Foundation Staff
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Posted: Wed Aug 24th, 2005 00:59 |
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Eurico,
It is very simple.
Diflucan blocks the enzyme CYP27B1, which is needed for the mitichondria in the macrophages to convert 25-D to 1,25-D
So with a lower generation of 1,25-D in the inflammation your sister will feel better - for a while - and then relapse worse than ever.
..Trevor..
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Nikki
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Posted: Wed Aug 24th, 2005 01:04 |
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Trevor,
Since Benicar lowers 1,25D, would she probably have felt as good had she taken Benicar instead?
Eurico
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Sarcoidosis Start MP Apr04 - Oxycontin fentanyl-patches Welbutrin Effexor Clonazepam Iron Calcium Progesterone=1mg daily; Estrogel=1.25g daily (25D=4ng/ml - June/09)
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Nikki
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Posted: Wed Aug 24th, 2005 01:26 |
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Why is it that some people have almost immediate relief from 1,25D reduction with Benicar (or diflucan for that matter) and others have a difficult time? Is this a known yet?
As always, thanks for your replies, Trevor.
Eurico
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Sarcoidosis Start MP Apr04 - Oxycontin fentanyl-patches Welbutrin Effexor Clonazepam Iron Calcium Progesterone=1mg daily; Estrogel=1.25g daily (25D=4ng/ml - June/09)
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Dr Trevor Marshall
Foundation Staff
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Posted: Wed Aug 24th, 2005 02:03 |
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yes, I would guess she would get relief from Benicar, but remember that it kills bacteria too, so if she has a heavy bacterial load the herx might overwhelm the euphoria.
There are a lot of hormones (and body systems) depending on 1,25-D and PTH. Some folks have a hard time, for a week or so, with the readjustment of these hormones. Others have a hard time for a longer period, while their bacterial load is worked down
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sunflower
Guests visiting Phase 1/2/3
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Posted: Wed Aug 24th, 2005 03:43 |
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eurico and everyone,
i've been on diflucan for a few mos now (i've had an ongoing candidiasis problem for many years) and i do not feel well at all. i have also taken it in the past for a few mos and, for me, it has done nothing to resolve my ongoing health problems. don't know if your sister's case is different from mine, though.
because of the effect diflucan has on 1,25d, will my test results be totally ineffective for determining if i have th1 disease (since i've been on it so long)?
thanks...sun
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lyme,fibro,candida,allergies,gerd,osteopenia/ pain,fatigue,dizzy,memoryloss20+yrs/ celexa,vicodin,cal-mag/beni 40mg q6h 11-05/phase 3,8-06/1,25d=34 25d=36,18,17,10,13,5,7
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Dr Trevor Marshall
Foundation Staff
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Posted: Wed Aug 24th, 2005 04:21 |
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I don't know Sun, best thing to do is measure them and figure out what we are looking at after that. Either the 25-D or 1,25-D might be definitive, if not, we will have to start looking at other things (like lymphocyte counts, etc)
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Nikki
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Posted: Wed Aug 24th, 2005 11:43 |
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Thanks very much for the explanations, Trevor.
Sun, I don't know the answer to your question about why my sister had such amazingly quicky relief with antifungal treatment whereas you and perhaps others don't. I guess hormone levels and bacterial load have something to do with it.
Eurico
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Sarcoidosis Start MP Apr04 - Oxycontin fentanyl-patches Welbutrin Effexor Clonazepam Iron Calcium Progesterone=1mg daily; Estrogel=1.25g daily (25D=4ng/ml - June/09)
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lucie
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Posted: Wed Aug 24th, 2005 17:10 |
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Do you know if same explanations applie for Amphotericin B? Those it act the same way as Diflucan? Can it help to improve temporarely symptoms and maybe celar GI track if someone have fungal infection there oo, and then do MP can be easierr?
Is someone took that Amphoterin B with some improvment for fungal infection?
Lucie
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Diagnosis CFS, fibro & Lyme,04/05: 1,25D=46&25D= 14, ratio 3,2. Avoiding light & D, wear NoIRs/ Started Olmesartan July 11th 05, 20 mg Olmesartan every 3 hours. Started Mino July 17 2005, 25 mg QOD.
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kathleen
Guests visiting Phase 1/2/3
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Posted: Wed Aug 24th, 2005 17:17 |
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Hi,
I took A-B for candida. It was helpful for my gut symptoms, and did nothing for me overall. But then my most difficult symptoms are dysautonomia, and cardiac, and killing the gut candida wouldn't affect them.
I'd say, let your sister enjoy her time of feeling better, and then if she crashes she may be interested in starting the MP. Maybe she'll experience a miracle, but probably not.
Best luck, no giving up, Kathleen
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CFS '86, LTD '86 (50 yrs old)pacemaker - total heart block '99 fatigue, cognitive, sleep, digestion, dysautonomia, weakness, headache, tinnitus, IC, new anemia 9/9/04 D,25 44 - D,125 76 4/05 D,25 24 4/05 Ben 40mg/6hrs, Mod Ph 2
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sunflower
Guests visiting Phase 1/2/3
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Posted: Wed Aug 24th, 2005 17:32 |
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lucie,
i can only speak for myself, but i also was on amphotericin b for many months, twice, and it also did not resolve my health problems. if i were you, i would take trevor's advice and stick with MP to get at the root of the problem, cwd bacteria. as your immune system becomes more functional it probably will take care of any fungal problems as well . i'm rooting for you lucie...sun
ps: i love your accent in writing!
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lyme,fibro,candida,allergies,gerd,osteopenia/ pain,fatigue,dizzy,memoryloss20+yrs/ celexa,vicodin,cal-mag/beni 40mg q6h 11-05/phase 3,8-06/1,25d=34 25d=36,18,17,10,13,5,7
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Hercules
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Posted: Wed Aug 24th, 2005 17:57 |
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I can speak from my own experience. I had moderate fatigue and some other mild sympotms that arent worth mentioning prior to taking diflucan. I took a diflucan every day for almost 30 days. I didnt notice anything for those 30 days really. But about 2 weeks after i stopped taking it is when i got full blown sick.
here is a link to my original post last year...
http://www.marshallprotocol.com/forum22/1328.html
Hercules
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CFS symptoms 4years.. Bolle Supercell w/ 100 lenses and Noir #35 w/ 2%.. 12/7/04 Beni40 Q6H ever since.. 12/15/04 first dose mino 25mg 1/2/05 nov 2004 tests-->25D: 14 ng/ml; 1,25D: 66
2006 1,25D: 61; 2007 25D: 7 ng/ml
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lucie
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Posted: Thu Aug 25th, 2005 02:47 |
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As vitamine D can come from fungus, is it possible to have blood test to check which kind of Vitamin D we have:
Another substance that is often called vitamin D is ergocalciferol (sometimes called vitamin D2 or Calciferol). It is derived by radiating fungus. It is not the naturally occurring vitamin D for humans. Fungus contains fat-like substances called sterols which are commercially irradiated to form ergocalciferol.
Ergocalciferol does not exist in detectable quantities in the human body, only in tiny quantities in plants and as such is "unnatural," when in the human body. You can not get any appreciable ergocalciferol by eating vegetables. Ergocalciferol is metabolized to various substances in the body, some of which are not normally present in humans, although these metabolites have never been shown to be dangerous. There is also some evidence that ergocalciferol is more toxic in overdose, which is curious as it is only about half as potent as the naturally occurring vitamin D, cholecalciferol. Your body also metabolizes ergocalciferol more quickly than cholecalciferol.
http://www.cholecalciferol-council.com/pharmocology.shtml
Is it possible that people exposed to toxic mold, like me, maybe have Ergocalciferol?
Lucie
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Diagnosis CFS, fibro & Lyme,04/05: 1,25D=46&25D= 14, ratio 3,2. Avoiding light & D, wear NoIRs/ Started Olmesartan July 11th 05, 20 mg Olmesartan every 3 hours. Started Mino July 17 2005, 25 mg QOD.
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Dr Trevor Marshall
Foundation Staff
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Posted: Thu Aug 25th, 2005 06:34 |
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Lucie,
I would ask you not to post this nonsense please. Yes, I know you got it from a website, and yes it probably was written by an MD with a bunch of PhDs, but it is just plain nonsense and would be misleading to other MP folks who might read it without knowing what 'the Cholecalciferol Council' really is.
We have asked somebody to respond to your other question about mold hyper-sensitivities, please wait for their answer.
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Dogster
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Posted: Thu Aug 25th, 2005 13:20 |
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Dr. Marshall (if seeing this thread still),
a couple hunches here. If the bacteria sort of take over the command center of the macrophages and the mitochrondia are "busy" converting the 25-D to 1,25 D, then it is no surprise CFIDS researchers find CFIDS patients have mitochondrial problems?????? And some immune cell problems. And then, as the soup of microbes reproduce and spread to more and more tissues and organs, with various feedback loops in the body, more things function more wrong and more "intricately" wrong!!!!! (How's that for layman's thinking!) Then, researchers jump in at any of the many "layers" of dysfunction, and say, "Hey, found this thing here wrong" and you "you should take /do XYZ" . . . .. And so we keep reading about dozens of "causes or co-causes."
Its also no surprise then that when a lot of patients with various Th1 diseases are told to take fish oils and "vit" D (and things like this) and do so-- they feel slightly better (although not actually getting better) because they now have yet more of the seco-steroid 1,25-D in them.
I don't know who the "cholecalciferal council" is, but assume it is some commerical interest . . . .
There is a protocol for lyme which uses diflucan and an antibiotic: so the diflucan blocks the CYP27B1 enzyme and they are "accidentally" getting this reduction in 1,25 D??? The reason this protocol gives is that diflucan inhibits the enzyme called cytochrome p450, for which borrelia has a defense, so this inhibits the growth and replication of the borrelia. ( They also say diflucan penetrates well the cells of the brain and nervous system.) So, they have "stumbled" upon something, but dont really understand it . . .???????
I am beginning to have great (if disdainful!) respect for these microbes!!!!
Dogster
By the way, what is your best definition of "intelligence"???
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CFS lyme RSD: pain migraine| tylenol fioricet flexeril tramadol temazepam| acidoph guaif/cold| Q| Cut D/exp Feb05| NoIR Mar05| June05 Comm Beni Q8H| July05 mino| Jan06 PH2| Aug06 1,25D=29 25D=17|
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Dr Trevor Marshall
Foundation Staff
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Posted: Thu Aug 25th, 2005 15:26 |
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Dogster,
There are many P450 Enzymes. CYP27A1 (catalyzes Vitamin-D to 25-D) and CYP27B1 (catalyzes 25-D to 1,25-D) are two of them. Fluconazol inhibits CYP27B1.
I disagree that "borrelia has a defense" against anything. Reducing the behavior of a complex organism to this level is not helful in understanding how its genome works, IMO. This is a complex bacterium, with half of its genes on mobile plasmids, not its chromosome. It changes shape and form at will, and probably is heavily involved in producing mutant pathogenic forms in conjunction with other bacteria.
The concept of "blood brain barrier" is useless, outmoded and unhelpful. The pathogenic bacteria travel to the brain THROUGH cells, not just around them.
..Trevor..
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wrotek
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Posted: Thu Aug 25th, 2005 16:19 |
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bacteria can travel to brain so easily ? What makes them live in spinal fluid in some people and other`s people not?
Does science has a hypothesis fot that?
Is it dependent from Borelia construction or our body contruction? This is so scary to have knowledge that i can have Lyme in my brain, scarrryy brrr  .
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Lyme reflux chronic pain fatigue depression 125D36 Ph1Sep05 Ph2Oct06 Ph3Apr07 homebound in low lux NoIRs 25D<7 Oct06
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Dr. Greg Blaney
Health Professional
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Posted: Sun Sep 4th, 2005 01:14 |
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I wish to clarify this situation as I was the one who treated Eurico's sister. Her 1,25 OH Vit D was 100 but in pmol/L. Converted to pg/ml, her level was 38.5. Big difference. I believe at that level she was just 2 SD above mean. Also she had a normal ratio.
So in this case I suggested treating her candida issue first and if successful, great. I also recommended that she recheck her D levels in the future and that if she began to relapse or found that she needed to continue treating her candida, that she probably had Th1
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59 year old male, started MP Dec 2004. Remaining symptoms are mild periodic tinnitus & dry skin. On Benicar 40 mg tid and azithromycin 125 mg q10d. Completed all phases including using Bactrim.
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Nikki
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Posted: Tue Sep 6th, 2005 16:00 |
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I asked my sister to double-check her Vitamin-D results she had given me. Her response was:
1,25D-250pmol/L (NR 40-190)
25D-105nmol/L (NR 25-130)
I believe that equates to:
1,25D - 96 pg/ml
25D - 42 ng/ml
I believe the 1,25D is very high.
Eurico
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Sarcoidosis Start MP Apr04 - Oxycontin fentanyl-patches Welbutrin Effexor Clonazepam Iron Calcium Progesterone=1mg daily; Estrogel=1.25g daily (25D=4ng/ml - June/09)
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livitup
Member in Phase 3
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Posted: Sun Sep 11th, 2005 14:38 |
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Have found this discussion most fascinating. Can only tell you my story as a newcomer to MP just starting out on Benicar with 25mg Minocycline....
Nearly 30 yrs ago, I had my first experience with vaginal yeast, was treated with whatever vaginal cream was available at the time. At first, the treatment appeared to help. I also started to have a few of the symptoms of hypervitaminosis D--(not knowing until very recently what is was or that there was a connection with Th1 disease)
By the mid '90's, the chronic yeast became unbearable. At one point I was consuming 200mg Diflucan sometimes BID for wks at a time just to get some temporary relief. Both my infectious disease and gyno doc's did not know what else to treat me with since we exhausted the gammit (herbal, holistic, dietary and/or pharmaceutical) and I was either resistant or couldn't tolerate anything else. Even my husband had been treated to ensure we weren't transferring it back and forth. I also started having some significant symptoms of hypervitaminosis D, severe chronic migraines, significant female problems, and eventually in '99 I succumbed and agreed to the total hysterectomy which was supposed to make me feel so much better.
That's when things went spiraling downward fast and I have since then lost my active lifestyle completely. After going thru 3 neurologists, I was finally dx'd with MG by tensilon testing. I then tried every treatment possible to help curb the effects of MG: mestinon, IVIG therapy, imuran, prednisone.. He had a hunch I had some kind of neuroreceptor problem--even had spinal tap to rule out any infection. The MG was compounded by the chronic migraines. (In the end I had on average only 4-5 days a month in which I was migraine free!!)
By 2003 my yeast got so pervasive from being on either prednisone or imuran, there were days when my tongue and my bowel movements were GREEN!!! On top of that, I wound up with a severe case of shingles that lasted for weeks, put on 3 rounds of valtrex only to start having chronic urinary tract infections and put on all sorts of antib's for that. By then I completely blew my intestinal tract. When the endoscopy revealed esophogeal candidiasis, the gastro specialist had no choice but to give me diflucan again. Both neuro and gastro advised getting off prednisone and imuran. I did so. The uroscopy revealed IC and I became extremely depressed. It took several months to get all the drugs out of my system and almost 2 more years to rid myself of the yeast while coping from the remaining from shingles pain due to the nerve neuropathy I developed.
Then I was diagnosed with lyme this past April, started IV therapy and oral antib's and the yeast reappeared even on heavy doses of probio's and lots of high cultered yogurt. What a surprise!
I have since stopped my doc's protocol and he has agreed to start me on MP.
My tongue is only slightly white now, but curiously, I have no other symptoms of actual yeast anywhere. I strongly believe that Dr. Marshall is right and plan on continuing his protocol no matter how long it takes.
Linda
Moderator's note: MG means myasthenia gravis
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Linda-Dx:Lyme,MG,IC,DI,IB/GERD/Bar.Esoph,Osteo,Migraine,Reynaud's,Sjogren's; 8/05 MP-I, 12/05 MP-II, 7/06 Mod MP-II, 12/06 Restart MP-II, 4/07 MP-III; 3/09 25D-10;CutD/lowluxhome/Noir
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Ames
Research Team
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Posted: Sun Sep 11th, 2005 15:45 |
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This topic is of interest to me as well.
In the months prior to starting the MP I was on oral ketoconazole, yet another antifungal shown to reduce 1,25D serum levels.
The following is an article from PubMed about the interaction between ketoconazole and 1,25D (very sorry, I could not get the link to paste, so just copied it here...)
1: J Endocrinol Invest. 1990 May;13(5):407-13. Related Articles, Links
Ketoconazole reduces elevated serum levels of 1,25-dihydroxyvitamin D in hypercalcemic sarcoidosis.
Glass AR, Cerletty JM, Elliott W, Lemann J Jr, Gray RW, Eil C.
Department of Medicine, Walter Reed Army Medical Center, Washington, DC 20307.
The antifungal drug ketoconazole, a cytochrome P450 inhibitor, has been shown to inhibit renal 1,25-dihydroxyvitamin D production in vitro and to lower serum 1,25-dihydroxyvitamin D levels in normal subjects and in patients with primary hyperparathyroidism. To assess the usefulness of this drug in the hypercalcemia of sarcoidosis, a condition thought to result from overproduction of 1,25-dihydroxyvitamin D by sarcoid-involved tissues, two men with sarcoidosis, hypercalcemia, and elevated serum levels of 1,25-dihydroxy-vitamin D were given ketoconazole, 600-800 mg per day, for four to six days. Serum 1,25-dihydroxyvitamin D levels were markedly reduced (by approximately 40%) in both patients during ketoconazole administration, but serum calcium was not affected. In both patients, renal function deteriorated during ketoconazole treatment. We conclude that ketoconazole administration can lower the elevated serum 1,25-dihydroxyvitamin D levels in sarcoidosis. However, deterioration of renal function during ketoconazole administration as well as failure of hypercalcemia to be affected during short-term ketoconazole treatment suggest that this drug might not be appropriate for acute treatment of hypercalcemic sarcoidosis.
First off, I find it interesting that these researchers actually correlated elevated 1,25D production with the symptoms of sarcoidosis. They work at Walter Reed Med center, right across from NIH....I would be interested to hear their response to the way the NIH views sarcoidosis.
Are the cytochrome P450 enzymes part of the same family that prevent the conversion of 25D to 1,25D in the same manner as Nystatin? Or is the mechanism here different?
What I find intreaguing is that I cut out vitamin D from my diet, and began to avoid light for about two months prior to starting Benicar. During this time I was taking ketoconazole. I became incredibly light sensitive and had several other reactions that later were almost exactly the same as when I started Benicar. Like Eurico's sister I began to feel MUCH better during this time.
However, like Nystatin did with Eurico's sister, was the ketoconazole simply generating a palliative effect? Also I wonder how Eurico's sister was able to feel better on Nystatin when she was not avoiding light, since I feel regular light exposure would have consistently given her hyper-D symptoms....
Lastly, I realize that this discussion is somewhat irrelevant since Benicar obviously works best to lower 1,25D. However, it may be useful in the sense that people with Th1 illnesses may want to be warned about taking an antifungal drug, because although they may feel better, they may actually be aggravating their condition and inviting a relapse.Last edited on Sun Sep 11th, 2005 16:21 by Ames
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CFS/FMS/osteopenia/severe insomnia Non -MP meds: Gabitril (16 mg),Trazodone (150 mg),Tramadol (20 mg) for pain. Light: Noirs (outside and bright lights), thick layers, sunscreen
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Dr. Greg Blaney
Health Professional
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Posted: Sun Sep 11th, 2005 20:43 |
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I was incorrect in my last posting as on rechecking my files proved Eurico's data valid. This brings up the following issues. One, which I believe is likely, that an underlying Th1 condition led to a significant candida overgrowth which when treated resulted in symptomatic improvement. My personal experience was when I was treated for candida back in the 80's, I, too experienced a remarkable improvement. However, over the subsequent years, my health slowly deteriorated. With treatment using the MP, these health issues have slowly but progressively improved including a chronic fungal infection of several toenails. It is therefore possible that this patient's condition will worsen in the future.
I will attempt to contact her (I only saw her once) to repeat her D panel. If her levels have improved then one must consider that candida may behave in a similar way as other intracellular pathogens. I am doubtful about this as another of my patients with confirmed intestinal candida and who also improved with antifungal meds did not show elevated 1,25 OH D or abnormal ratios. As stated previously, there is much to learn about Th1 disease and open and constructive discourse is vital to continue to expand our knowledge.
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59 year old male, started MP Dec 2004. Remaining symptoms are mild periodic tinnitus & dry skin. On Benicar 40 mg tid and azithromycin 125 mg q10d. Completed all phases including using Bactrim.
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