Vitamin D Community
Vitamin D Deficiency ?
About This Community:

This community is for discussions about vitamin D, what it does, vitamin D deficiency, symptoms, foods that provide vitamin D, supplements, effects on health and when to see your doctor. We also encourage discussions about any other vitamin D topics that would be of interest to other members.

Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank
186 Comments Post a Comment
Viewing 201 comments:
Blank
Avatar_n_tn
I was diagnised with Kidney failure last year and after some serious treatment things have stabalised or so I thought. I started to get some pain in my hips this moved to my hands, fingers, wristes, knees and ankles. Mentioned this to my Doc who did'nt really know. So went back to my Gp who did not have much of a clue "got to do with your kidney"was the Ans I was getting. Anyway pestered him and finally got referred to the Rheumatologist who happen to mention Vit D3.  Gave blood and waiting results. Googled Vit D3 came up with this site and low and behold all my symptons are here! thought for a bit I was going crazy trying to get  everyone to believe me.

Joe
Blank
Avatar_f_tn
Hi,i am 30 and have been having a lot of symptoms that the doctors could not explain since i was around 15 years old .ok i will give ya some history first. i got married when 13 and had my oldest son just before i turnned 14 he was 2 months early  than i had my oldest daughter just after i turnned 15.My 3rd child i had at age 18 ,my 4th at age 19,my 5th at age 25 and my 6th at age 27. ok i was fine after my first child ,but about 3 months after my 2nd childbirth i started getting tired i was working out a lot and it just got harder and harder to make it through the work outs and i was starting to gain weight also had headaches at this time he gave me prescription ibuprofin and said to see if that helped a month later i went back i had gained within about 1 to 2 months almost 30 pounds i told him something wernt right i wasnt eating and workin out and still gaining and my hands started hurting  so he ran tests and it came back with underactive thyroid so i went on med for it how ever he also tested for RA and it came back negative so he said i had CTS and told me to wear braces on my hands and wrist .I also became depressed and put my self in counseling was diagnosed with depression ,ocd,and anxiety ! but still i didnt feel all better until a few years later but just before i got better i had a seizer and went through all the test to find out that it was prob just stress related i got divorced a couple months later and my thyroid went back to norrmal on its own in early 1997 .
   Later in 1999 after ive had 2 more children almost exactly 3 months after my 4th child i started gaining weight,getting tired ,had swelling in my hands that cause a lot of pain  and same symptoms also i had to go on antidepressants again.But this time all tests came back normal also i started feeling better in 2002 started losing weight again and was ok till again after my 5th child at around 3 months after giving birth all the same symptoms started again and it wasnt till end of 2005 that i started dropping weight again and i was not able to get pregnant that whole year prior until a couple months after my body started going back to normal .also this time when my body started to fix itself insted of a sezier i woke up from a nap swollen to the point i had to go to the hospital and go on a fluid pill and with in a week of that i had a bad allergic reaction to a cheese steak sandwich had to go back to hospital . but after this my body went back to normal again  or atleast until i had my 6th child  again about 3 months later it all started again but this time it started with tiredness then a lil weight gain woke up swollen again and when i went to doctor to get fluid pill my blood pressure was low also .
   now i should also mention that while my body was messed up in 2005 i also started having pain when i would take a step then i got a stabbing pain between my shoulder blades and it was hard to walk for about three weeks but by the time my body went back to normal i was not having much pain and the docs did think at first that it was lupis or ra or also had mentioned fibromyalgia also .
    Now when it started back after 6th child  i ended up quiting my job for a few months to rest .than went back to same job and ended up falling and messing my back up real bad  my nuro doctor says i need new spine  so i now have constant muscle spasms nerve damage and just a lot of pain i have degenertive disc disease with bone spurs and myofacial pain aswell .and im still having the excessive sleepy feeling.so i decided after blood test and sleep studies and heart monitors and so on that i need to figure out what was wrong i started researching hormones and vitamins  i started taking vit b12 cause it seemed to fit and a multi vitamin and also a&d vitamin . i started to lose a little weight and have a little more energy but a long way from being normal again .oh and i forgot to mention that i also became diabetic in 2008 but i dont always test high so it took almost 6 months of testing before i went on the pills for it .
   so i went in to have kidneys tested and asked the doc to test for some of my vitamins ,D,B12  ive been taking vitamins since sep 2008  and i was slightly high on vit b so he said to take it everyother day but i was still low on vit D .
       so i believe that all of theese wasted years were due to vitamin defficency this whole time due to having many kids and so close together  .once one vitamin is low it can cause a chain reation in ur body .It can work just like ur thyroid causing all kinds of problems  including  causing ur body not to utilize sugar or other nutrients .
       I would almost bet my life on it that its the vit D  that is the cause of all the symptoms. i should also state that i also have rage isues that have gotton worse over the years and dizziness , trembling also   but when my body felt normal i did not have the symptoms or depression and even my hands felt better during the normal  periods of time.I am also currently going to doc for memory issues to . sorry to write such a long comment and for any miss spellings . i am glad that i found this site ! i have wished to feel normal for so very long and to have everybody know that im not crazy that ive been saying for years that my body is messed up even though it looked like everything was normal on test results . i wish that the doctors were more open to doing tests other than the usual screenin panel they do .Cause now that ive found out what is wrong with me i still have the messed up back to boot.i wish i could get all those years of feeling so bad that i didnt want to live anymore  back !!!   I am happy because i now know that i am going to be able to get back to feeling better sooner than later but when i started reading all of ur stories i also cried ,because to think that ive been living like this for so long and all the life it had took from me for so long . all because of something so simple as a vitamin!!!!!        I wish all of u the best and hope that u r all doing well   !!!!!
Blank
Avatar_f_tn
well i was reading some more of ur posts and wanted to add that if for any reason ur stomach is messed up maybe acid or hurt burn or even a flu that iritates ur stomach or even possibly pregnancy could cause a disruption in it .  this can cause u to not absorb vitamins as u should and if u r taking vit d u should be taking vit c inorder to absorb vit d .  and the cold numbness i have had along with facial numbness well actualy about half way up the back of my skull all the way down to my feet and hands so it is possible the vit d is the cause for it .  also i read in a article about a year ago that  30% or so of people tested for lyme  get a false negative back.also thyroid u can also give a false negative .  also on the ana if u r a women it can be considered normal if u r a little low because they thaught i had lupis back in 2005 and sent me to rhematoligist but xrays came back good except for my knees showed some wear  but oddly enough they were about the only place that wasnt hurting  lol . the doc told me not to worry about the ana test that it was not uncommon for women to test low.  but how ever i have been tested since and it is fine  also off and on the test for inflamation (inflammation) comes up inflamed and then goes back to normal   so i think it is very possible that at different times symptoms will very depending on how or wat other minerals and vitamins the low vit d  will affect  !!! thanx
Blank
806046_tn?1239152156
Hi, I am really glad i found this site. thanks to eveyone who posted, it has been very educational. i am a 31 yr. old female who was just told that my vitamin D level was very low. how low they didnt tell me. i went into the emergency room 2 weeks ago with severe headache, blurred vision, body pain, fatigue, nausea and weakness. they perscribed me 800mg of ibruprophen and reglan 10mg. the ibuprophen gave me severe pain in my upper stomach right up under my rib cage, so i stop taking it. after taking these meds the symptoms still did not go away. thats when i went to my Dr. who took bloodwork and told me that my vitamin D level was low and that i need to get a ultrasound done on my liver since recent ultrasound found a "spot" on it. i am waiting on the results to see what is going on. what should i do until the results come back. duh i know the answer PRAY! thanks for all your testimonies!
Blank
Avatar_m_tn
People who have had countless symptoms including fever, joint pain, muscle pain, lack of concentration, poor memory, dizziness, low energy, shakiness, poor sleep, feeling of heart attack,facial and extremity numbness and tingling etc. to name a few- symptoms consistent with many of you, have been to my knowledge diagnosed with D deficiency, but also might have symptoms consistent with Lyme diesease. This could explain a bunch of things as well as lead to many more questions. You draw your own conclusions...

The trouble is most docs know very little about LYME or they dismiss its signifigance. Testing has a high incidence of false negative, there are numerous categories of LYME that you could contract other than the commonly tested for borrelia burgdoferi, there are several ways to get it other than ticks, and you may not even notice a tick on you. The LYME symptoms may come and go over time making them more difficult to identify. Some tests may be more accurate in early stages while others are more accurate during later stages. There are many tests for LYME that your family doc or insurance company will probably never reccommend, if they even know about them in the first place.

A great place to learn about LYME is at Columbia University, NY where they can run a full array of tests with leading edge technology, knowledge, and research, and take LYME concerns much more seriously than most doctors. If they are able to help even one of you that would be great! They can at the very least give hope for a solution to LYME, possibly to your health! just find Columbia University LYME center info on a search engine...I have never been there so I can not reccommend them. On the other hand, from what I have read, they are among the top in the Lyme research field.
Blank
Avatar_n_tn
hello, have also been diagnosed with low vit D, level is 13 instead of 60 -100. i too also have been feeling awful, incredibly tired, emotional, headaches, pains and aches in legs and arms and last week sharp pains in legs. have been put on alfacalcidol to raise my levels.

before finding this site i did think i was going slightly mad, and in a way i way i am relieved to find this, although not good to hear that other people are struggling with this too.

i have another two weeks to wait before i see the DR again, and not sure how i will cope, i think i will have to try and rest and maybe take some time off work. although, sitting around doing nothing does not help and feel very restless.

also, an odd symptom is that my legs buzz sometimes like my mobile is ringing and on vibrate, but its not, it my legs. this is how i first found out what was going on.

i have just been discharged from hospital after 18 months of Graves Disease, some of the symptoms are similar, but i do think i have had this shortage of Vit D all that time, as i had to give up cycling to work round that time as my legs became weaker and weaker.

Anyway, i wish all good health!
Blank
Avatar_n_tn
For those with joint pain, including CFS and fibromyalgia sufferers, and for those with vitamin deficiencies:  most doctors do NOT know that undiagnosed celiac disease can cause these symptoms.  They mostly think of celiac as an intestinal ailment, but it is an autoimmune condition where symptoms can bypass the intestines entirely, and the immune system can attack joints, thyroid, skin, pancreas, brain, etc., causing an unbelievably large range of symptoms. It almost ALWAYS causes vitamin deficiencies.

On the bright side, it's the easiest disease in the world to cure, and the cheapest:  don't eat gluten (the protein in wheat, rye, and barley).

The reason doctors don't know about this is that they are trained and taught by the pharmaceutical industry, and the pharmaceutical industry cannot sell a drug for this.  They don't make any $ if you change your diet and stop taking all the medicines they throw at you.

Check out some websites on celiac:  www.glutenfreeandbeyond.com, www.celiac.com
Blank
Avatar_n_tn
Although Vitiman D Deficiency may be a symptom of something more serious (as many people have stated above) it may also be due simply to lack of sunlight (staying in all day, covering all skin when in sunlight, using sunscreen whenever outside etc.).  

So...(in my opinion)...keep aware and informed (and get tested and talk to your doctor about whatever you feel necessary etc.), but don't "jump the gun" and convince yourself you have some terrible disease.  I did this once.  I googled my symptoms once and convinced myself I had Rheumatoid Arthritis.  I went to the doctor in tears...all "freaked out" and the doctor laughed at me and shook his head and told me I did not, indeed, have it.    

My point: Worry...BUT don't worry (if that makes any sense)

Crazy Fact: Seems the whole skin cancer prevention thing is tricky:  Sun burns (and too much exposure) can lead to skin cancer and using sunscreen (and covering up) can lead to lack of vitamin D which can lead to skin cancer.  

Go Figure!!!  

A.K.
Blank
Avatar_n_tn
after 5 weeks of taking alfacalcidol and one capsule of cod liver oil and half a calcium tablet (they are too big to swollow) every day (last two tabs recommended by a nurse friend), i can say that i suddenly feel better this week, it was also the easter weekend so i rested (although i did drink enough alcohol to drown a small horse), but compared to how i felt last week i am a different person, anyway, thought i would share this


Blank
Avatar_n_tn
I just tested low 18. I am starting 50000 tomorrow for 4 wks. I suffer from severe depression, anxiety, weight issues, cholesterol, high blood pressure all within the last 2 years. This will be amazing if that is what it is. I am 46 and have felt something is up with my hormones. I will keep you posted.
Blank
Avatar_n_tn
after feeling great for one day, i have gone back to feeling awful again, but at least i know that i can feel better. but have gone back to usual symptons, feel extremely tired to the point of feeling exhausted, feel short of breath, emotional, and seem to gaining weight even though i am not eating more than usual, havn't slept well for last 3 nights which may be a factor, but the way i feel is more than just in need of sleep, hey ho, hope i will feel different again soon

Blank
Avatar_n_tn
I am a 29 year old female and 4 weeks ago was finally diagnosed with Vitamin D deficiency.  My level was a 6.  My rheumo. prescribed me 50000 IU D capsules.  I take them once a week for 4 months.  I'm on my fourth week and although I am feeling a little better, I have my good days and bad days.  

This whole journey began the first week of February this year with severe chest pain, headaches, terrible joint pain in my wrist and ankles. Sometimes the pain would travel very strangely to different parts of my body.  Watery diaherra (diarrhea) that lasted 5 days, and I still have it periodically. (sorry to be so detailed, but it may help someone else suffering like we all are), shortness of breathe, pain on my ride side of abdomen, lymph nodes were horribly swollen, severe upper back pain, dizziness, I also lost my appetite completely.  I went to my GP and told him that I felt like I had been beaten up by someone.  He told me I had the flu.

This went on for a month and a half and my symptoms seemed to get worse.  I LOST 18 lbs. and I felt extremely horrible.  I have a 17 month old who I have to watch and it was very hard for me to function in everyday life.  My mom had to come and help me with the baby, I simply couldn't function.  This comes from a person who has a very high pain tolerance.  I gave birth to my child naturally with no pain medication. (by choice).  And honestly I would rather give birth any day than deal with this pain.

I asked my GP to send refer me to a rheumotologist and he thankfully did.  My GP didn't think there was anything wrong after doing a chest x-ray and ultrasound.  I also had to go to the ER one night from severe chest pain.  They did a ct scan and told me they couldn't find anything.  Then I went to a rheumotologist and  she tested me for lymes disease and vitamin D.  I tested a 6 on vitamin D and my lymes disease came back in the middle range.  Whatever that means.  But they said I don't have Lymes Disease.  I should also add that I have had Hashimotos Thyroid Disease since the age of 14. And have had no other health issues.  My rheumotologist told me that it is very common for a person with an autoimmune disease(Hashimotos Thyroid) to get another Autoimmune disease.  But she hasn't done any further tests.  

I hope this is just a lack of being in the sun, and hopefully it has something to do with my hormones changing after the birth of my daughter.  However, I still have vague pain in my wrists and ankles, I still get headaches, and I have this visual problem with glare.  It seems like everytime I look at something bright there is a glare in my eye for awhile.  I also have lateral chest pain, I'm bruising really easily, sometimes my eyes itch, as well as my hands and feet,  (maybe once a week they itch and not really bad), and lower back pain.  

Honestly, I'm loosing faith in my docs.  they are not very supportive and they act like the prescription vitamin d will solve everything.  I just hope with more time on this prescription my symptoms will fade.  I don't know what else to do.  Currently I am on Levoxyl for my Thyroid disease, 50000 Iu Vit D, Centrum performance, vitamin C, and sometimes I take Prilosec to help with my chest pain.  It doesn't always work though.  

Thanks for sharing all of your stories they have truly helped me!!!
And I hope my story helps someone else.
Good Luck to you all!!
Take Care
Blank
Avatar_m_tn
32 yo male
Just found out that my Vit D level was 10. IAbout a year ago had an accident and broke a rib and got costochondritis. Doctor thought it was my heart and sent me to the hospital. Everything with my heart was neg.  Got treated for costochondritis and it felt like it when away. Does it come Back? I now have headaches/headpain in my temples and all over my head about 8 months.  Even went to er because my headache neck pain. Pain in my rib chest area for about the same time. MY pain moves around my chest and ribs. I had 3 ekgs for my heart in a year  and they were all the same and normal. Cardiologist did not want to see me again. My nuerologist said it was migrains or FMS. I am not depressed and I work in the mental health field. I have a burning sensations in my right shoulder, DR sent me to gastro. He said that is not why I have pain in my shoulder. He did scope me and found out that i have esophogitus (which i never feel) and a polyp Possible barrets syndrome. I get tingling in my feet, especially my sole of my left foot and sensations all over my body. Took two lymes test both negative. I live across from the woods. There was a spot on me with some black thing in it. The docs told me it was a staph infection. Then also got an infection in my salivary glands in my mouth. I am glad I am not the only one with these symptoms. Two Drs later one of which said I have no idea what is wrong with you. Got a new Dr and she ordered these test. 1 pill 50000 units once a week for 12 weeks. Hopefully I will start to feel better. Sorry so long.
Blank
Avatar_n_tn
I am 57, lost 1 kidney to cancer 4 years ago - extremely healthy prior to that. Post op pain lasted for years - especially ribcage pain. It was intolerable - have been unable to wear bra for 4 years due to the pain in that area (wear loose bra tanks)

Consulted many specialists with zero findings. Prescribed many serious narcotics - only morphine, Tilox & Tramadol eased the pain.

Friend mentioned her bone pain was relieved by high doses of D. So I requested blood test & it came back a "2". Was sent to endo who re-tested, stating he'd never seen anyone with a level of 2. His lab came in with "0" - totally undetectable levels.

After 50,000 units 3 times per week for 5 months, my ribcage pain diminished greatly. I've been off the prescription for 2 months & now the pain has begun returning every night. I will see the endo next week for follow-up.

Strange how this seems to relate to the kidney issue. Must research that further.

Blank
Avatar_n_tn
I, too, had a life-threatening condition last year that involved serious prescription drugs and a surgery similar to yours.  Then I suffered from severe lower back pain, muscle aches and spasms and just plain bone pain.  All tests came back negative, but finally the Vit D showed extremely low.

I don't think your  pain/vit D issue has any connection to your kidney issue.  I think that you, like I, were so compromised by our health problems that we were not eating well and not getting outside enough. That simple.  Since I have started the vit D and getting out for my walks (without sunblock) I am just about back to normal.  (Once my level is up, the sunblock goes back on.)


Blank
Avatar_n_tn
Does it take along time for the Vitamin D prescription to make a difference?
I'm on my fourth week of 50,000 IU that I take once a week. My Vitamin D level was 6. And believe it or not when I first started taking them I started to feel better, but now all my symptoms are coming back slowly.  I now have an extreme stiff neck pain that radiates to my shoulders. And my lower back is killing me on my right side.  

Can anyone offer some advice?
Thank you
Blank
Avatar_n_tn
i wish i could, am coming up to a month now (original level was 13) am assuming when i go back to my DR i will have another test,

currently am feeling rubbish, not sleeping well at all, interesting to note info from tiffdog5 i am am incredibly itchy, all over, mostly legs, feet, hands, body

legs are in contact low ache, still have trouble walking, feel like i have been on long walk, long marathon and long swim, but i havn't, someone said to me when i arrived at a work meeting this monday "did you cycle in" as i was so short of breath, i had just been walking.

not good really,

Blank
Avatar_n_tn
couldn't read the entire post set, you all sounds like you THINK you know what you are talking about. Most doctors DO try to find the answers to your problems, even when you have left the office, we are still thinking about you. Sometimes we simply can not find an answer and this is serious reality that people with all their internet and technology seem unable to accept. Further, vitamin D deficiency is very common and DOES NOT necessarily mean you have some mysterious underlying condition.  Yes, you should get a thorough evaluation, but maybe you just need to get out in the sun more!
Blank
Avatar_n_tn
that is so unhelpful, really, when i went to the doctor with thyroid issues he completely treated me like i was wasting his time, started telling me that after 3 minutes that i had to go as there were other people waiting to see him (i was the only person in the waiting room). When three days later they called me back with greaves disease and was apparently really ill he wanted to shake my hand and all the other doctors wanted to get their hands round my throat as they had little experience of seeing a hypo-thyroid person before.


i have spent the last 15 years or so supporting people in my career and i have to say if i treated people like i get treated by my doctor, i wouldn't have got very far earning people's trust. there are many more stories i have about attending my doctors, i have a nurse friend and i tell some of the stuff, she is pretty horrified by my tales, such as being told the reason I may not be able to get rid of a cold is that my partner may have transmitted a sexual transmitted infection on to me! That I wasn’t feeling well because I must be depressed (six months later diagnosed with graves disease).

That when I called to get the results of the vit D levels the receptionist on the desk, read the results and told me that all was normal, she is not supposed to do that, PLUS the results were not normal they were at 13!. You have to laugh really!

however, i did not come on here to rant about doctors or be told i 'should get more sun' i was hoping that sharing what i am going through might be helpful as my personal experience not being treated well by your doctor or not being listened  too can have negative effects on your well-being.

From this website I have worked out that I may have had low vit D for about 3 or 4 years and that may have been the underlying issue with my health for then. If I could depend on my doctor for help or support then I life would be different, but, living in London it just ain’t like that. I really do wish I could get a ‘thorough evaluation’ and be treated like an adult, really. But that does not seem to be on the menu so I look elsewhere for some kind of resolution I found that here.

Thanks and support to those who continue with this.

Ps, in case people are interested,  had a lovely day in the country on Friday day, felt refreshed and full of life on my return to the city,  however, aching legs kept me awake all the of the night. Work wants to send me to ‘occupational health’ and the company want access to my medical records, funny! Have no frame of reference for this, do I just say yes?
Blank
Avatar_n_tn
Update from my post of April 18, 2009 - I must say in the last week a startling clarity and lightness in my emotions has come over me. I will test my blood tomorrow at the lab. I will let you know what it came in at. I took my last dose on Wed 5/12. I now am taking 2000 units per day as prescribed. I still have aching calves at night and I have had a bad round with seasonal allergies so physically it is hard for me to decipher exactly how I feel but emotionally I sure feel better!
Blank
Avatar_n_tn
I got my results today and my level is now 54. I am to take 2000 units daily. I feel emotionally like a new person, depression is gone. Anxiety is back to what I used to feel like. I am sleeping well and my dreams are very active. I remember them better. My legs still cramp but I again the allergy season is not at all agreeing with me this year so I'm not sure physically how I feel since I am tired and no energy. I tell everyone I know about vitamin D. This should be on the top of the list for all psychiatrists, doctors and therapists. In fact I think I'll even write Obama and suggest it as part of the new Health Care Reform.
Blank
Avatar_f_tn
I have just come back today after several months away from reading this series of postings on Vit D, and there are flags popping up in my mind as I read.  I too was ill for several years and told my Vit D levels were too low and to take large supplemental doses as many of you are being told to do.  This was from a very good endocrinologist, and the best diagnosis she could come up with was 'chronic fatigue', but she had no explanation for WHY my Vit D levels were so low.  I knew however that there was something serious going on with me and kept looking for a more definitive diagnosis, which turned out to be Lyme disease and another disease like malaria (called babesiosis) that is sometimes carried by the same ticks that carry Lyme.  I am now under the care of a doctor who specializes in Lyme and am making excellent progress -- all without Vitamin D supplements.  (There is some theory that taking Vitamin D if you have Lyme makes the situation worse -- I won't get into the details here, but just throw that out as a thinking point if you go reading about these issues.)

Several of you above say that you were tested for Lyme and came back negative.  There is a RAGING debate in the medical community about the diagnosis and treatment of Lyme.  The so-called mainstream position held by the Centers for Disease Control (CDC) and the Infectious Disease Society of America (IDSA) are:  (1) as to diagnosis, most doctors want to see a big red circular ('bullseye') rash, and then the first and sometimes only test that is done is called an ELISA, and if it comes back positive, then a Western Blot test.  The problem is that the rash doesn't show up in everyone, and neither one of these tests is very accurate and miss many obvious infections; and (2) as to treatment, those who are diagnosed are treated with perhaps 10 to 30 days of antibiotics and told that they are cured, no matter how they feel, and that any remaining symptoms are your body's immune system overreacting to a now-absent disease.

Unfortunately, the CDC and IDSA have come to these conclusions based on outdated and inaccurate information submitted by doctors some of whom have or had a financial and career interest in not looking stupid by changing their minds now in the face of continued research and treatment developments.  Another group call International Lyme and and Associated Diseases Society (ILADS) takes the newer and more thoughtful point of view that we really don't know everything, but there are people out there suffering who are not being treated because we don't fit into the narrow standards for diagnosis and treatment set some years ago by the IDSA-types.  Most doctors currently practicing are taught to believe the CDC/IDSA as authorities on the subject, which usually works fine, but in this case, there is strong indication that they are wrong AND stubborn.  Let's put it this way:  even the CDC says that Lyme is the most common vector-borne disease in the United States.  It is present in all parts of the US and Canada, as well as Europe, despite what some say.  

Lyme disease is caused by a spirochetal bacterium, similar to the one that causes syphilis.  Yes, the veneral disease syphilis.  The corkscrew-shaped Lyme bacterium has a fondness for hidden places in your body that, once established there, antibiotics cannot easily reach -- such as your brain and your joints (are your knees bothering you?), making Lyme actually harder to treat than syphilis.  The Lyme bacteria also have a neat trick of hiding from your immune system by shape-shifting into a cystic form that lets the bacteria sleep until they are ready to come out and feed and reproduce.  Testing for the cystic form is, as far as I know, not possible, and treatment is difficult (but not impossible) if Lyme progresses much past the first few weeks after infection.  

The symptoms of a post-bite rash (seen only in perhaps half of Lyme patients) go away within a few weeks, and the ELISA and Western Blot tests are highly variable in their sensitivity and accuracy, leading many doctors to believe that Lyme disease is not present or has been cured, and so they look no further -- but what about continuing symptoms?  The doctors often call this a lingering overreaction by your immune system to a disease no longer present, and so don't want to treat it, or are often too happy to hang a psychological diagnosis on Lyme patients who continue to manifest symptoms of severe anxiety, short term memory loss, depression, lack of concentration, difficult in word-finding, which are not uncommon in untreated Lyme.  The continuing damage that Lyme can and will do is in fact a serious matter, similar to what happened to those with syphilis before penicillin was invented:  years or decades later, severe dementia can result, in addition to the other earlier symptoms of joint and muscle pain, memory problems, heart damage, and others.  This is a serious disease too often not taken seriously, and it does not go away by itself.

I personally never saw a tick or had the rash the doctors are so keen on, and when I was in the ER (twice) with severe heart irregularities (on top of severe fatigue, confusion, terrible headaches and muscles cramps), my dr simply increased my estrogen dosage and had me tossed out of the ER the second time as an attention-seeker and a hypochondriac.  In fact, I had recently been infected with Lyme and the malaria-like disease and was seriously ill, remaining that way for quite some time until I found my way to a doctor who follows the more progressive ILADS standards of diagnosis and treatment.  If I had been diagnosed and treated properly at the early stage (in the ER), I would not have progressed to the point that I am now.  Treatment for me now is rather prolonged, but still possible, and the sooner treatment begins, the better the chance of a complete cure.

Be forewarned that if you follow a path to determine if you have Lyme beyond the 'gotta have a rash and a tick, gotta pass the ELISA and Western Blot' approach, your current doctors may try to discourage and belittle you as pursuing quackery, but if you're as sick as I was and making no progress, what do you have to lose by looking into it?  My life was disintegrating day by day, and not pursuing and treating was not an option.  Doctors believe that desperate patients will try desperate treatments, but patients deserve respect and care and appropriate treatment no matter how desperate they are.  This disease is on the cutting edge of medicine, and smug doctors who think they know it all are not honoring their profession or themselves.  (I remember when the standard in medicine was that anyone with a stomach ulcer was giving to themselves because they were too stressed out -- that changed not too many years ago when the bacterium H. pylori was discovered to cause stomach ulcers.)

The symptoms of Lyme vary greatly from person to person and over time, so it's a tricky one, but also a very serious disease.  If you are interested in learning more, join us over at the Lyme Disease forum here on MedHelp.

Sorry for the long post, but it breaks my heart to read your stories and think that you may have Lyme and other co-infections that your doctors are overlooking while you continue to suffer.  Best wishes to you all.

Blank
Avatar_n_tn
Dear readers,I hope to have it diagnosed :hypovitaminosis D. It all started in 2003 I was always tired and the only signs was pains in my knees,it would come and go without any regular pattern.A physician did a couple of knee xray ,it was ok,also some lab work everything was ok ,antinuclear ab was -,ESR was -,lyme disease-,c reactive protein -,rheumatoid factor -,except the calcium 10.9 mg/dL,he just gave me some Ibuprofen.

After all those years the pain never really went away each time all the blood test just showed the same borderline hypercalcemic #,the other abnormal test was  alkaline phosphatase 97U/L, ALT at 80 U/L and the creatinine slightly elevated at 1.6 mg/dL  more signs appeared:difficulty to seat down (I had to grab the arm chair to help to releave the pain in my knee)same thing when getting out of  a chair,out of my bed or out of my car .My all body felt achy,sore,stiff like if I had train in the gym.all that mostly in the morning. If i had to pick up something on the floor It was a challenge sometimes.I felt like my whole body was rusting away.Sometime i woud also have pain in my right elbow and my lower back.My lips were always dry,always thirsty in the morning,have a urge to chew on ice. Beside all this I kept working out (weightlifting) at the gym 2 hours 3 times a week.....For a while I tought I had fibromyalgia,Reactive arthritis,depression,hypercalcemia,hepatitis related arthritis,osteoarthritis,lyme disease,hemochromatosis...

Finally an endocrinologist tested the vitamin D (25) it is 11 ng/mL and he hesitantly told me to start taking vitamin d carefully not to increase the calcium.Not satisfied with his answer I did my reseach and concluded that 400 iu was not enough I just started on 5000 iu of cholecalciferol daily and I will test the calcium regularly at the lab where I work to watch for any vitamin d toxicity.I think that I have what they call hypovitaminosis D myopathy (see article at this link http://www.springerlink.com/content/173e6gwhxlrr7gj5/).

I'm still following up with different physician my last kidney  sono was ok.I'm glad i found that forum to learn and share knowledge about vitamin D deficiency.
Blank
Avatar_f_tn
I have learned a lot about Vitamin D deficiency from reading all of these posts.  I am still wondering, though, about the relationship between Vitamin D and calcium.  My calcium is on the high normal side, meaning if it goes up by .2 it will be out of range, and my Vitamin D is very low.  My PTH test was normal months ago, and my Lyme test (for whatever that's worth) was negative.  I have  had symptoms that you have all described here - muscle and joint pain, numbness and tingling, muscle twitching, headaches, TMJ, clicking in my ear...the list goes on and on.  So, my rheumy said that I need 2000 IU of Vitamin D daily, as well as calcium, 600 IU.  I started taking this dosage a few months ago and many of my symptoms subsided, but my existing heart symptoms (arrhythmia) were exacerbated, maybe due to my calcium.  So, I stopped taking it and now my symptoms are back.  I'm going back to the endo on Monday, and I really want her to look further into a parathyroid problem.  Can a person have a parathyroid problem with a normal PTH?  Does taking Vitamin D increase calcium levels in the blood?  I am 43 and have osteopenia and feel far older than I should.  Any suggestions on how I should approach this with my doctor?  Thanks!  Lily  
Blank
Avatar_n_tn
I am very happy to have found this site...I thought maybe I was crazy...I think maybe the doctors thought it too at times. Just found out today my d level is a 4. All the pain and worrying and not sharing the pain because it sounded so ridiculous...all the weird unrelated symptoms
I did not want to not tell my doctor, but it sounded so wierd describing the symptoms. I thought she might think I was a hypocondriac, heck, I would have if I were her and did not know myself so well. I NEVER copmplained ever about physical discomfort so this was very difficult for me. Chest pains, dizziness, muscle cramps, hip pain, rubber band streched sensation in  legs, major discomfort in shoulders and head and the brain fog was the worst.I am very fortunate that she ordered this test for me as I find that it was getting worse and worse.Now I know why. I really hope that the strong supplement will work quickly and end it all. I'll be sure to check back
Blank
Avatar_n_tn
I have always had morning stiffness and recently started suffering from trigger finger.  After reading up on it, I started taking Vitamin E, Fish Oils and a multiviamin.  My symptoms worsened with pain being added to the mix.  Left hand all fingers and right hand, just my middle finger.  When I did a blood test, it came back with Vit D at 15 which is classified low.  I was about to start vit. D supplementation when I decided to do more research and came up on the Marshall Protocol.  Everybody here MUST do a search on this and go to www.marshallprotocol.com before any vitamin D supplementation.  If sunshine or vitamin D supplementation increases your pain, you most likely have vit. D disregulation going on which basically is the conversion of 25 OH vitamin D into its active form 1, 25 Dihydroxy Vitamin D.  This conversion which is normally controlled by kidneys goes out of whack when L form and Cell Wall Deficient bacteria start converting outside of your kidneys and this plays havoc with your system.  The only way to get rid of these bacteria and the chronic disease is to severly avoid Vit. D supplementation and get on the Marshall Protocol.

Also note that your symptoms may get worse in summer when you have greater sun exposure.

PLEASE NOTE:  Vitamin D is not a vitamin, it is a very potent steroid that your body tries to tightly regulate since it has known 970 plus gene expression impacts.  It is also a secosteroid with known immunosuppressive effects.  The FDA should ban the addition of vitamin D into our food chain.

I am seeing my doctor today and the first thing I am going to request is a 1,25 Vitamin D and 25 OH vitamin D ratio test.  The 1,25 Vitamin D is very hard to do correctly and is only done with any reliability by Quest Diagnostics (according to the marshall protocol site).

Blank
Avatar_n_tn
I came upon this chat board after 2 months of searching diffrent things and another light bulb went off maybe lol.
I have been in chonic pain for the last 4 months.
It has progressively gotten worse in the last 2 months when I went into the hospital! The dr though it was was a galblader attack.  After they ran thier tests they said nope not the gal blader? I was in for a  week they sent me home telling me it was a nerve inpingment? Go to pain management for your treatment! Nothing helped thier either, now several dr's later and lots of research. I had a catscan done in the hospital in June, Last week MRI.I was reading my tests results and noticed my liver is increasing in size?No one has picked up on this yet / IE DR'S. Do you know if Vit. D deficency would cause this issue?

I went to a orthopedic dr. I told her I kneeled on my bed in a ball position it helped the pain to a level 2 from a 8-9. Now im off to a surgeon.
Now lets see what happens ? Maybe im having multiple issues?
Thanks for letting me chat :)
Blank
Avatar_n_tn
I have Fibromyalgia, Crohn's Disease, IBS, Plantar Fasciitis, Carpal Tunnel Syndrome & of course Depression.  I've had pain so bad in my legs lately that it feels like something is forcing my muscles out of my legs when I walk.  I am in constant pain, I feel like I have bruises all over my body, especially in my shoulders and chest.

The doc ordered xrays including pelvis, sacroiliac joints & lumbosacral spine series, and all came back normal.  He ran blood studies of all sorts and the only problems were Vitamin D deficiency & then my usual high level of inflammation.  He has started having me take Vitamin D 50000UNT 1x/wk for a month & then once a month thereafter & Calcium 600mg.  He added Sulfasalazin 500mg 2/2xday for the Crohn's.  I've already been taking Lyrica 150mg 2x/day, Cymbalta 60mg 1x/day, Elavil 50mg 1x/day & Lidoderm patches for my ribs as needed.

Now he's sending me back for more blood studies in 3 weeks to follow up, but has added a test for Sjogrens & didn't mention it in my visit.  I haven't been able to work since the middle of December due to all of my ailments.

Does anyone relate to all of these problems?  How does one get on disability for all of this mess?  With my insurance being $500/month before copays, prescriptions, etc., I'm in need of some income until I can get back on my feet again.

He put me on Prednisone for one week & my gall bladder pain disappeared as well as my Crohn's pain & Plantar Fasciitis pain.  I've been off of it for 3 days now & the pain is already coming back.

If anyone has any advice, information or even comments, please let me know.  I appreciate the help in advance.  Thank you!
Blank
Avatar_n_tn
well, got my results back from the hospital yesterday, i had to ask my doctor to refer me for second opinion,

have riased methylmalonic acid, suggesiton of IM vitamin B12 replacement thearpy, been prescribed 1mg injections 3 times a week, when loaded to move to oral dosage

also, vitamin d is now 46 (was 13) also, have been prescribed Vit d replacements,

am sure of this means something of course, hopefully things will start improving



Blank
Avatar_m_tn
I went to see my docter because I thought I had leukemia. My bones hurt all the time and my muscles were so weak. I was shocked when I was just told I have a very low level of vitamin D in my system. It was 9.5! The scary thing being that I was already taking a vitamin D supliment when I took the blood tests. For the past year I was feeling terrible most of the time. My stomach was always hurting, heart rate was over 100 bpm my muscles we weak, I was always tired and dizzy. I went for several heart exams I had a colonoscopy and endoscopy. All came back ok and I was always told I was just anxious. I was put and many different depression medications and gained 50 pounds- but not until this week did a doctor find my very low vitamin D problem. She ordered 3 different 24 hour urine tests and many more blood tests and also a whole abdomin (abdomen) sonogram. I never read any posts where people say what the underlying cause of their vitamin D problem is.
Blank
Avatar_f_tn
A related discussion, Vitamin D Deficiency was started.
Blank
Avatar_f_tn
Hello to all of you,
I have a very bad Vitamin D problem but my doctor said that it would be ok. I have a bone spur in my chest and my fingers I read that a lack of vitamin D can cause bone spur. But they said no that were not true, but I know that it can.
I am taking Vitamin D. I was tested and all the vitamin D was almost gone. Sometime the doctors don't want to go through the time to real help.
Mary
Blank
Avatar_f_tn
Hello everyone,
I had a vitamin D problem, I had pain seem like every where in my chest I founded a bump doctor xray said it was a bone spur. It really hurts I am
taking vitamin d I waiting to see if it helps.
Blank
Avatar_f_tn
Hello to all of you,
I have a very bad Vitamin D problem but my doctor said that it would be ok. I have a bone spur in my chest and my fingers I read that a lack of vitamin D can cause bone spur. But they said no that were not true, but I know that it can.
I am taking Vitamin D. I was tested and all the vitamin D was almost gone. Sometime the doctors don't want to go through the time to real help.
Mary
Blank
Avatar_f_tn
A related discussion, Chronic Breast Pain was started.
Blank
Avatar_n_tn
A related discussion, vitamin  Dlevel should be 80 was started.
Blank
Avatar_f_tn
A related discussion, Vitiam D being low cause pain? was started.
Blank
Avatar_f_tn
Hi :) I would HIGHLY suggest pursuing Lyme disease treatment.... You will at this point continue to test negative because Lyme doesn't live in the blood except for the first few days after being bit.... Watch UNDER OUR SKIN , it's a documentary about Lyme and the horrid controversary.... It can be watched on Netflix ITunes Hulu ect..... I promise it will be worth your time <3 Finally I am healing  because I'm treating the Root of all my symptoms...
Blank
Avatar_f_tn
Hi, I am asian aged 25 female has got epilepsy since 10 years. For past week i've had a temperature in evenings and night and feel dizzy wen I get up. And a really really bad cough. More or less bedbound. Went doctors monday said quite low b.p. Blood results came today said vitamind d should at least be 30 but i've got 4. Waiting for prescription to be delivered. Getting pain under right side of belly feels sore, might be due to cough. And jaws have been hurting aswell. Thanks to all those who read or responded.
Blank
Avatar_f_tn
Vitamin deficiency of any kind can be a symptom of a malabsorbtion disease like Celiac disease which is an auto immune disease where the body attacks the cilia in the small intestine when you eat gluten causing malabsorbtion.
Blank
Avatar_f_tn
I was just diagnosed with vitamin d defeciancy and since then I have had severe pain and dizziness. I can just be standing and all of a sudden everything goes dark and I feel like I'm going to pass out. Everything I read about this it seems like no one else has these issues. I would like to hear from other ppl that have te same symptoms.Yes my doctor put me on daily vitamin d and didn't run any other tests. Doctors never listen to the patient and believe what they are saying. Which in my opinion is wrong because we are the only ones that know our bodies and when something feels wrong.
Blank
Avatar_f_tn
Wow, reading these posts was like a slap in tge face to me, I've experienced problems fir the past couple of years now. I'm not one to up and go to the doctors but when things started to affect my life, I decided to go get checked. My symptoms have increasingly gotten worse and worse and I've have had blood work pulled like five times in the past five months or so. Nothing major ever comes up and I've been diagnosed with depression, fibromyalgia and other small stuff that I feel like is only a quick fix solution to a deeper problem tge docs are not willing to look for. New symptoms seem to pop up every couple weeks and I NEVER feel good anymore. Finally this past lab test they found that I have vitamin d3 deficiency.  So hopefully taking the supplements can get me on my way to feeling better but it seems from reading all these posts tgat perhaps I should still keep looking into this to determine what the underlying cause.....
Blank
Avatar_f_tn
A related discussion, Tired and frustarated was started.
Blank
Avatar_f_tn
I am coming into this years after the first post. I have vitamin D deficiency as well. I was miserable with aches, weakness, and tiredness. I suspect it is because I am very overweight. Overweight people sometimes are deficient because vitamin D is fat soluble and too much body fat can keep it from being released. I would get on the regimen to get your level up to normal, regardless of the reason you are deficient. It will be easier to research if you feel halfway decent.
Blank
Avatar_f_tn
I am coming into this years after the first post. I have vitamin D deficiency as well. I was miserable with aches, weakness, and tiredness. I suspect it is because I am very overweight. Overweight people sometimes are deficient because vitamin D is fat soluble and too much body fat can keep it from being released. I would get on the regimen to get your level up to normal, regardless of the reason you are deficient. It will be easier to research if you feel halfway decent.
Blank
Avatar_f_tn
HI
  
  I was just Diagnosed with Vitamin D deficiency, Just to list my other problems 1st,
1) I have Leff Perthes Disease was born with this
2) I have recently been diagnosed with Bipolar 2
3) Recently Diagnosed with Personality Disorder (dependent & avoidance)

Also Just Diagnosed with Vit D.. My number is 19. I have extreme pain in my whole left Leg... ( They claim that's cause of my Legg-Perthes ).
From my Lower back to the bottom of my foot, mostly Stabbing or really sharp pains.... I am really small, I am 4 feet 11 inches, I weigh in at 86 pounds, I am 28yrs old. I have had 4 children at ages 17, 22, 23, and 25. I only had drugs administered through my I.V... I didn't have any upadorales with my 4 children. My Pain is so severe I am currently on more drugs then I can handle..
1) Vit D 50,000 IU 1x week for 8 weeks (Vit D Diefency)
2) Hydrocodine/acetamin 10-325 evry 4 hrs or as needed. (pain)
3) Vit D 2,000 on the days I don't take the 50,000
4) One Source Womens Multi Vit For the days I don't take the 50,000
5) Ibuprofen 200 mg supose to be take with pain pill Hydrocodin
6) Hydroxyz Pam 25mg for the allergic reaction (Itching) from the Hydrocodine....

I see 2 Docs.. 1 is my Primary and the other is my Pain doc, they both work for the same firm just different locations. My Pain doc said at my last appointment the pain I'm going through is impossible, Legg- perthis Doesn't cause that much pain, ( I agree been living with Legg-Perthis all my life)
Then I asked him Whats the problem, He looked right at me and said I don't know you tell ME... I said your the doctor with the Degree I am just a patient with no Patients left, I see you and pay you its your job to find out whats wrong with me, it's not my Job. So he said to Make YOU (me) Feel better He is sending me to have another test done I'm not sure what it is exactly but its called a Nuc med. Some type of test, they make you drink or put something in a IV and put you on a Table where they can see beyond your Bones, like inside of them. I am really confused, I'm unsure if this is cause of the vit D or the legg Perthis..
Ok my symptoms....

Pain on left side of body, Starting from My pelvis in back to my hips down my left side to my Foot. The pain is unable to be described, Sometimes it dull other times is so unbaring I use my wheel chair or my walker. The Pain is like a Constant pain, it's like I have been cut, the burning a sharp pain feeling. Other times I feel like my Hip is on Fire, My calfs lock up sometimes like as if I was prego, other times I feel like im having braxton hicks , some times I feel as If I just curling up in a ball and laying down to cry will stop my body from hurting. I have tried ALL the at home remedys, Massages, actupunture, the rub the foot in the right place, teas, the chinesse ways, the japaness ways, my grandmothers ways, everythig and the only test that has come back is My vit D which came back at 19. I am always tired, People tell me its the kids but I am an at home mom for 6 years now. I used to keep the house clean as possible and now just standing doing dishes hurts, my 6yr old helps with laundry cause doing house work is a chore and it takes me twice as long, it hurts to bend, crouch, walk, stand, I become weak and tingly if I sit to long or lay down to long. My sleeping pattern is way outta whack, I sit up at night I've taken over the counter sleep aids, I've tried Mozart, waterfalls, spiritual music,out side sounds, wind, sea noises, classical, jazz, blues, I have tried everything and I'm still sitting up at 5am trying to get comfortable trying to go to sleep even a short nap. then during the day I am so tired and so irritated in so much pain that it hurts to even think, I can't concentrate, I forget things.. OMG someone please Help me I am to young to Feel this Damn OLD!!!  A song sang by garth brooks, its true!!!!!!!!!!!!! Any information on why I feel this way would be so much appreciated.. Email me ***@**** Thanks so Much
Blank
Avatar_f_tn
You need to be checked for primary Hyperparathyroidism. Could explain the pain/fatigue/psych symptoms/mood/vitD deficiency. Your childhood disorder, Legg perthes dz may cause some pelvic/hip/thigh pain but I suspect that it has nothing to do with your major symptoms. Good Luck.
Blank
Avatar_m_tn
Hi

What is relationship between vitamin D and low thyroid antibodies?
My TSH has always been normal, but years ago I requested testing for thryoid antibodies as I was so tired.  Antibody level high, placed on low dose thyroid medication.
Just found out my vitamin D is low, wondering if there is a connection?
Thanks
Blank
Avatar_f_tn
I have just been diagnosed Vit D Deficient as well.. but mine is 27. I went in to an Endocrinologist thinking I was having thyroid issues again. (I am slightly hypothyroid). My thyroid panel and ultrasound came out great but he noticed i was Vit D deficient and put me on 50,000IU 1x/week. I took my first 4days ago and already can feel my muscle and joint pain feeling a tiny bit better. I still have some other unrelated symptoms as well. My thought it that "what came first, the chicken or the egg?": meaning, does the Vit D deficiency (although not dangerously low) cause my other symptoms  that are unrelated, or is this other "X factor" (that i have not figured out yet) caused the D Deficiency? I am currently waiting on a 24hr urinalysis test result to come back to check my kidney and liver function and hopefully that will help me find answers..

But I do think after that amount of time, you should be feeling better..

Have you looked into/checked for autoimmune issues (Celiac, MS, Chrons, thyroid, etc?)
Blank
Avatar_f_tn
Pegs.                                    I just found out I have vitamin d deficiency! My stmptoms were fatigue.    And anxiety! Started taking 50000 vitamin d once a week and feel.          Better! But my doctor did not say.       Why I am vitamin d deficient so I.      Will ask! All of your comments.         Really helped me! Thanks
Blank
Viewing 201 comments:
Post a Comment
To
Blank
Weight Tracker
Weight Tracker
Start Tracking Now
Vitamin D Community Resources
RSS Expert Activity
242532_tn?1269553979
Blank
How to Silence Your Inner Critic an...
Apr 16 by Roger Gould, M.D.Blank
242532_tn?1269553979
Blank
Emotional Eaters: How to Silence Yo...
Mar 26 by Roger Gould, M.D.Blank
1344197_tn?1392822771
Blank
Vaginal vs. Laparoscopic Hysterecto...
Feb 19 by J. Kyle Mathews, MD, DVMBlank
Top General Health Answerers
4851940_tn?1385441629
Blank
jemma116
United Kingdom
8271277_tn?1397398607
Blank
sblythe
Jonesboro, ME