just wanted to confirm something to see if everything i've read on here was interpreted correctly by me lol
I have tested low for 25OH vitamin D and high for 1,25 diOH vitamin D but normal for calcium and parathyroid hormone.
Therefore - from what i've read - it points that I don't just have a quote on quote regular vitamin D deficiency where the high 1,25 vita D is just do to compensation.
From what i've read my reason for that thinking is because my PTH hormone is normal meaning there's no 'direct' reason for the high 1,25 vitamin D??? Since PTH would have increased to attempt to increase the vita D levels by increasing 1alpha hydroxylase in the kidneys.
But because the 1,25vita D is already mysteriously high the parathyroid gland doesn't sense a need to release its hormone???
So in conclusion lol ... me supplementing with vitamin D probably wouldn't be a good idea??
Does the seem correct?
Thanks -Matt
-------------------- Age: 22 - Symptomatic Since age 19
First LLMD appt Oct 3rd to start treatment! Currently on 500mg Cefuroxime twice a day Posts: 52 | From Windsor, ON | Registered: Jul 2008
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
Hi Matt-
I've heard of this happening before with lyme. You may want to ask DoctorLuddite. This poster seems very knowledgeable about D issues....
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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posted
Chronic inflammation can also upregulate the enzyme that converts 25 OH D into 1,25 OH D as macrophages and the like can elaborate this enzyme, and these subclasses of wbcs can be elevated in such states. For example, people with TB tend to have this pattern, as the tubercles are surrounded by these types of wbcs. People with TB tended to get better if they moved to sunnier locales, implying that vitamin D improved their condition.
Start with gentle supplementation of vitamin D3, ie:400 iu/day for a week, if no untoward reaction evolves, then double that for a week, then double it again for a week and so on and then repeat both levels in 12 weeks.
Supplementation of more than 2000 iu/day should be monitored by quarterly level testing.
Posts: 442 | From Biddeford, ME | Registered: Nov 2007
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posted
thanks for the reply - so you're saying that even though the active form is high I should still be supplementing and it may somehow bring them into balance??
When I did try supplementing before at 1000IU a day I did feel terrible for the time I was taking it so unfortunatley I gave up. Do people actually have somewhat of a herx with vitamin D??
-------------------- Age: 22 - Symptomatic Since age 19
First LLMD appt Oct 3rd to start treatment! Currently on 500mg Cefuroxime twice a day Posts: 52 | From Windsor, ON | Registered: Jul 2008
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posted
Yes that is the experience for some according to the posts I have seen on this board, but there are subtleties to finding the right quality supplement. Were you taking D3 or D2?
Are there any other health conditions that could be causing the conversion enzyme to be up regulated? Granulomatous disease can do this, and, certainly an active infection of any kind, Borreliosis among them, that causes induction of white blood cell clonal lines.
Do you feel crummy after going out in the summer sun? The vitamin D that can be generated from that (without sunscreen) is copious, and the best vitamin D you can get.
If it causes you to feel ill, it is likely because it is immediately being converted into the 25 hydroxy and then 1,25 dihydroxy and your body cannot handle the hyperdynamic state that hormone vitamin D induces.
Vitamin D2 doesn't fit as well into the vitamin D receptor and may act more like a toxin, though in general, it enhances the binding of endogenous D3 to the receptor, and people seem to feel better with it initially.
Posts: 442 | From Biddeford, ME | Registered: Nov 2007
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posted
there is also another theory on Vit D that is discussed with the Marshall Protocol.
the idea is that the Vit D metabolism dysregulation is part of the problem in being able to fight the bacteria.
i am about 6 months in on the MP and after reading that lowering my 25-D levels to an extremely low level (currently at 8ng/mL), I might be triggering a parathyroid problem which could lead to other problems like bone resorption I asked my Doc to check my PTH levels.
so long story short, my levels were:
25-D 8ng/mL
125-D 22 pg/mL
PTH 20 pg/mL
Calcium 9.5mg/dL
i take the Benicar 4 times per day (which brings the 125- D level down. previous to starting the MP my 125-d level was around 60pg/mL.
i'm not sure what this means exactly, but my PTH levels have not risen with my very low 25-D levels and also my calcium is right in the middle or normal.
i will continue to monitor it as i go along.
as for being on the MP, i would say it is too early to tell, but I haven't hit any of the danger zones that some have warned of.
Posts: 127 | From MA | Registered: May 2004
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but since all this stuff started i've seemed to have problems with taking anything ... like even when i take an anti-histamine (non-steroid) my symptoms get worse or even a probiotic
I feel good in the sun but I think it's because of the warmth it feels good on my joints and skin (i know its sad that i say it feels good on my joints and im only 22 lol) because after i come inside i feel much worse than i did before going out - to be honest ive only sat outside for minutes at a time because im so sun sensitive too since all these symptoms started
how is one tested for granulomatous disease and what are any of those symptoms compared to lyme?
my igenex test results are positive for lyme as seen in my signature so if that is causing it should i hold off on the vitamin d or still try to work up to try to normalize it
keep in mind i haven't even seen my LLMD yet and will be for the first time on october 3rd so i havent had any treatment for anything and only the positive igenex test and the weird vitamin d levels
-------------------- Age: 22 - Symptomatic Since age 19
First LLMD appt Oct 3rd to start treatment! Currently on 500mg Cefuroxime twice a day Posts: 52 | From Windsor, ON | Registered: Jul 2008
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Angelica
Unregistered
posted
DoctorLuddite,
I just wanted to say thank you for helping all of us. I really appreciate all you input and posts on this forum.
First LLMD appt Oct 3rd to start treatment! Currently on 500mg Cefuroxime twice a day Posts: 52 | From Windsor, ON | Registered: Jul 2008
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posted
Sans, if you feel good in the sun, vitamin D is good for you, but since oral supplementation made you feel crummy, then it either wasn't D3 at all or there was something else in it, like a preservative, that your body does not like.
Some vitamin companies do put a preservative, but I haven't done the leg work to find out which. I get my best results from a fish derived vitamin D3 that comes in capsules, poke the cap with a pin and squeeze some out, it should taste or smell like fish.
Going to a tanning booth for just a few minutes 2-3 times per week likewise should make you feel better, and may help raise your level. Be very cautious with tanning booths though, they can burn you.
The Marshall protocol works for some, and those with high 1,25 levels may be just the people it is designed for. Marshall doesn't agree, but I think the Benicar inhibits the production of 1,25 dihydroxy since it blocks the angiotensin receptor that is in the efferent arteriole of the kidney.
Evergreen, 1,25 dihydroxy is a hormone, and hormones are very potent. They up regulate gene transcription, which requires a significant amount of metabolic energy. That is what I mean by hyperdynamic state. As an analogy, lets say you have a car engine that is low on oil and is idling poorly; pushing a larger amount of a higher grade of gas through the fuel system and trying to run the sluggish engine at a higher rpm level might seem to go ok but is likely to create more heat and wear and tear, and the next time you let the RPMs drop, it might stall or even seize. It would start again after an appropriate rest period, but you'd never have the piece of mind you'd get if you replenished the low oil.
Also, Evergreen, since being out in the sun makes you ill, you may be one of the people that MP is good for, have your 1,25 di-OH-D level tested, but also check the function of the organs that vitamin D is activated by, the liver and kidneys, and test your thyroid as well. While MP works for some, there are those who will worsen quickly as their level comes down.
Also, Sans, at 22 you should be at your physical peak, the best shape you will ever be in. Did you see a tick or tick bite prior to 1st becoming ill? Was there anything else that happened at that time or any seemingly minor changes in your health that you noticed? Any immunizations or did you have amalgams placed? All possibilities need to be considered.
I assess daily how much vitamin D I might be getting from sun, and if I can't guarantee that I will be getting some I take 2-5000 IU of fish derived D. If I don't I feel poorly very quickly.
My last vitamin D level (June) was 89. I have never tested my 1,25 level.
Posts: 442 | From Biddeford, ME | Registered: Nov 2007
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posted
thanks for the reply ... actually im real photosensitive so its hard to stay out in the sun and even putting sunscreen on my skin reacts b/c i've become so sensitive to everything topical since this all started when i was 19 (grade 12)
when everything started the only thing i remember is that i was camping in Muskoka Woods Ontario and on the drive home from the trip someone noticed that my lip and eye was really swelling up (and I've been tested and have no food or insect allergies)
so anyways i honestly forgot how the swelling went down but it wasn't there when we got into the car and was gone by the time we got home (about a 4 hour drive) - my breathing wasn't affected
so anyways over the next week i don't remember how i actually felt (my memory for events has been terrible since this time) but my mom and I 100% that during that next week i had this rash on one of my hands that came and went (obviously whenever we went to the doc's it faded in the waiting room at the clinic) - we had pictures but that computer crashed and we can't get them
so i dunno if it was a bull's eye rash but ive never heard of the bull's eye rash coming and going like that?? maybe im wrong
Don't think i had any immunizations at that time.
But in university i got a flu shot each year.
Symptoms slowly got worse in my first and second year and then at the end of third year i had an operation and my symptoms got so much worse (especially my dehydrated skin, nose, mouth, joints symptom) almost instantly
Stayed worse and then had another surgery this past january and symptoms stepped it up again
I did get a Hep A vaccine this past May and the skin symptoms have gotten a bit worse since then to be honest
so i was done school this past april and haven't worked and just worked on doing nothing and relaxing and trying to figure this out to get better
a lot of my symptoms have lessened over the summer maybe b/c i'm not stressing about anything and given my immune system a chance but a number of them remain and are sooo terrible in my mind
but anyways finally got Igenex testing in august and an LLMD referel so im taking this year off to start getting better!!!
sorry to ramble lol so doctorluddite take whatever info from that lil story that is actually relevant
thanks
-------------------- Age: 22 - Symptomatic Since age 19
First LLMD appt Oct 3rd to start treatment! Currently on 500mg Cefuroxime twice a day Posts: 52 | From Windsor, ON | Registered: Jul 2008
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posted
Sans, The flu shot contains thimerosol, which is 50% mercury by weight; the manufacturers claim that the ammount per vial is low and the amount per shot therefore even lower, but I have never seen a research study that shows that the thimerosol does or does not settle in the vial, so with one immunization you may get most of the thimerosol or almost none of it.
Since you got worse each year of school, you have to consider the possibility that your body can't rid itself of the thimerosol, and it is using up your glutathione.
I don't know if there is Thimerosol in the Hep A vax, but since you got a little worse after it, that is a possibility. Whoever gave you the shot should have the manufacturer listed, and that information is easy to get from them.
Try to remember your last tetanus booster, that also has thimerosol. unless they come in one shot single dose vials, all vaccines have some kind of noxious preservative, and its effect on your system will be relative to the peculiarities of your detox capabilities.
They used to put thimerosol in contact lens solution; I know because my eyes used to burn like hell after a short period of having the lenses in, and my health deteriorated steadily during the years that I tried to wear them, even if only for rare special occasions. I found an optometrist who gave me a thimerosol free solution and I was able to wear the contacts without problems except that I would have to remove them after 8 hours due to dry eyes.
My health steadily improved after this...at least until I let an awful dentist put amalgams into 3 of my teeth, after I had them removed and had chelation therapy, my health is once again where I think it should be, but in the last 3 years I have had to take vitamin D or get lots of sun...
Something that helps our body detox mercury is glutathione, which is produced by the liver. A precursor to it that is absorbable and available as an otc supplement is N-Acetyl-Cysteine.
Evergreen, how old are you? If you have osteoporosis at an early age there may be an abnormality of the vitamin D receptor itself...or the parafollicular cells of your thyroid aren't producing calcitonin, which would hinder your body's ability to shunt calcium into the bones.
Incidently, research has shown that your 25OH D level has to be above 32ng/ml for you to be able to absorb calcium from food...If you are below this AND taking calcium, you are wasting your money.
Posts: 442 | From Biddeford, ME | Registered: Nov 2007
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Angelica
Unregistered
posted
Yikes is thimerosol still in contact lens solution?
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thanks so much but you keep spurring more questions everytime you come to the rescue with some good answers lol
so should i be looking into taking glutathione supplements??
or do you guys know if body/colon/liver etc.. cleanses would do the same thing to help rid of the heavy metals? should these types of cleanses be done during treatment though since hopefully ill be starting it on october 3rd?
actually you know what i had a free session of a foot detox that i went to for the first and only time a short while ago and the lady did say that it appeared that i was detoxing a lot of black flecks which she said meant heavy metals ... strange coincidence
anyone know if these foot detox are actually worth the money?
what about how i mentioned that i had two surgeries where i was put under general anesthesia - does that have any heavy metals in it?
last question but are you saying that the vaccinations and therefore ingestion of heavy metals could have made my lyme worse or are you saying that this is a totally separate issue??
thanks again so very much for your time and great responses
-------------------- Age: 22 - Symptomatic Since age 19
First LLMD appt Oct 3rd to start treatment! Currently on 500mg Cefuroxime twice a day Posts: 52 | From Windsor, ON | Registered: Jul 2008
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Angelica
Unregistered
posted
The foot detox baths are a good way to detox and some LLMDs encourage their patients to buy the units to use at home.
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posted
Glutathione isn't absorbed from the gut, it's made in the liver. One of the things it is made from is N-Acetyl-Cysteine.
Two trips to the OR with general anaesthesia doesn't expose you to heavy metals, but the halothane gasses of general anaesthesia may cause disruption of thyroid function as they contain fluorine, which behaves like iodine and may displace iodine from thyroid hormone, making it ineffective.
Iodine deficiency or excess of bromine, fluorine or chlorine (things that displace iodine)may not show up as an elevated TSH (thyroid stimulating hormone) until long after symptoms of thyroid strain appear. Google iodine.
There was a post on this site a month or two ago asking if peoples Lyme symptoms worsened or even first appeared in association with surgery...the response was generally that there was a correlation...
As far as I know, they have removed thimerosol from contact saline.
Posts: 442 | From Biddeford, ME | Registered: Nov 2007
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
Dr.L-
Will using the supp. N-Acetyl-Cysteine boost body concentrations of Glutathione effectively?
I've read that oral Glutathione is not well absorbed so I haven't even bothered trying it.
Thanks.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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posted
There is no guarantee of anything, in some it will, others not so much. Its medical use is to detox overdoses of acetominophen. It smells horrible, since it has a sulfur moiety. It is a relatively inexpensive otc carried by quality healthfood stores. Some alternative docs give IV infusions of Glutathione, and there have been threads on this board where it does amazing things for some and nothing at all for others.
When I first started taking NAC, (and still now) I had vivid dreams that were quite non sequitorial, but...entertaining.
Posts: 442 | From Biddeford, ME | Registered: Nov 2007
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