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modric
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Posted: Wed Jun 17th, 2009 08:07 |
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What would be the low vit D related to in this case (not me):
Man, 47 with:
- back of the head heaviness (tingling/pain)
- fatigue (especially on exertion), non-refreshing sleep
- brain fog
- feeling cold (T= 97,6-97,9°F)
- skin rash
- poor appetite but gaining weight
- constipation
NOT aware of any infection of any kind, and otherwise "in good health".
Problems started one day in Dec 07:
- as no appetite and not feeling OK after 12 beers and seafood the night before
- strong burning chest pain during watching TV (relieved after the next-day's Prevacid, ECG normal)
Positive Tests:
- Chest X-ray: some calcified granulomas (of "no concern")
- EBV EBNA IgG = 1:560 (0-99), CMV and HHV-6 IgG also somewhat elevated
- vit D = 9,5 (30-60) (vit D goes up after supplements and down again after stopping supps)
- vit B12 = low normal
- Ca and P were low at some occasions (PTH was normal)
- iron (calculated saturation)) = 19 (20-50)
- antiproteinase 3 (PR-3) = 6,4 (0-3,5)
- %Free Testost = 1.29 (1.5-2.2)
- glucose = 130 (65-100)
- LDL (calculated) = 112 (<100)
- triglycerides = 167 (<39)
- MRI of the spine: bulging discs in lumbar and thoracic, but not cervical spine.
Normal (negative) tests: MRI of the head, lumbar puncture (1 oligoclonal band, "rare" mononuclear cells) pituitary, thyroid, adrenal hormones (cortisol on the lower end), colonoscopy, gastroscopy, C-AnCA and P-ANCA, complement, liver tests, CA 19-9, Lyme, Mycoplasma, Toxoplasma, HIV, RF, SR,
QUESTIONS:
1. Could low vit D be due to insulin resistance (elevated glucose, obesity, high LDL and triglycerides)?
2. Can be low vit D and low testosterone (and low-normal cortisol) related?
Last edited on Wed Jun 17th, 2009 08:13 by modric
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About man,47,US (not me): back of the head pain, fatigue on exertion, poor appetite, gaining weight, cold limbs. 25-D 10 ng/ml, Ca,P,iron = normal-low, testosterone low, cortisol normal-low, EBV EBNA IgG 560:1.
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Toni L.
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Posted: Wed Jun 17th, 2009 11:59 |
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All your symptoms (except weight gain) are exactly my daughter's who has Lyme Disease. Those symptoms are very similar to many TH1 diseases.
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Toni L. mother of Olivia, 14 years old, tested positive for Lyme IgM, 04/09 1,25D-49, 25D-37
10/09 25D-27
Started Benicar 10/23/09, Phase 1 11/24/09
reducing D, covered up, zinc oxide, Noirs
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modric
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Posted: Wed Jun 17th, 2009 12:15 |
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| Yes, we suspect it's some kind of infection (EBV was suspected first) or autoimmune inflammation. Lyme was excluded both by blood and spinal fluid test.
____________________
About man,47,US (not me): back of the head pain, fatigue on exertion, poor appetite, gaining weight, cold limbs. 25-D 10 ng/ml, Ca,P,iron = normal-low, testosterone low, cortisol normal-low, EBV EBNA IgG 560:1.
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Aunt Diana
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Posted: Thu Jun 18th, 2009 01:59 |
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If I could tell you how many negative lyme disease tests I have had you would not believe it....but I DO have Lyme disease. Many things can affect the outcome of these tests and at best they are not even 50% accurate. You cannot rely on lyme disease tests for your diagnosis.
As you keep reading on these and other websites, you will hear that this is a very common lament amongst the LYme disease population.
You need to find a LLMD doctor. (Lyme literate medical doctor)
My Lyme doctor told me that the reason I never had a positive test result had to do with the fact that I had been taking penicillin at the time of the tick bite. This altered the test results. I'm not sure if I buy that but I do know that there are thousands of people who have been told they do not have LYme, ony to find out years later that they do have it.
The longer you allow the infection to proliferate the sicker you will become so you need to act....aggressively. REad
Have you seen the movie "under our skin"....if not you should. You can google it to find out how to see it.
However, if you can find someone to treat you on the MP that will be your best bet in the long run.
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Toni L.
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Posted: Thu Jun 18th, 2009 02:47 |
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My daughter had symptoms for years but her lyme test kept coming back negative. It wasn't until we switched doctors and the new doc insisted on sending her blood to Igenex Lab in Calif. The Western Blot came back positive. Truthfully it didn't matter whether we got a diagnosis or not. Once I found the MP and studied it for 5 months I had decided it was the only hope for a healthy future for her.
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Toni L. mother of Olivia, 14 years old, tested positive for Lyme IgM, 04/09 1,25D-49, 25D-37
10/09 25D-27
Started Benicar 10/23/09, Phase 1 11/24/09
reducing D, covered up, zinc oxide, Noirs
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modric
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Posted: Thu Jun 18th, 2009 06:42 |
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To Toni L and Aunt Diana.
What exact treatment did you have, for how long and with what success?
I was aware of false negative results for Lyme. But then all these results suddenly become positive in "certain laboratories" what could simply be "false positive" in many cases.
Last edited on Thu Jun 18th, 2009 06:43 by modric
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About man,47,US (not me): back of the head pain, fatigue on exertion, poor appetite, gaining weight, cold limbs. 25-D 10 ng/ml, Ca,P,iron = normal-low, testosterone low, cortisol normal-low, EBV EBNA IgG 560:1.
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Toni L.
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Posted: Thu Jun 18th, 2009 12:20 |
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Olivia had a bulls eye rash when she was 4 (she is now 14). We live in the country with tons of deer. The doctor didn't believe me, insisting that lyme was not in our area. To shut me up the doc put her on 14 day antibiotics. What I have found out since is she was put on amoxicilan which does nothing for the lyme bacterium. As a child she would get 105 fevers whenever she had a slight cold or ear infection. There were many more symptoms that I would talk to the doc about over the years but the pieces were never put together. She had what was being called "mono" in spring 2007 and she never recovered. It has been a downhill trip. I started to suspect Chronic Fatigue Syndrome (CFS). Finally this past fall when she couldn't breathe on the soccer field, I insisted on more tests (she had had lyme, mono, epstein bar, etc.) all negative. She didn't even show any mono antibodies. She then had echo cardio gram, treadmill stress test, 14 blood test (inc. lyme), 60 allergy tests, and pulmonary function test. I started researching CFS and found the MP site. I studied for months, sent a packet to our doc and promptly got rejected. Found another doc who suspected lyme and insisted on a new test at Igenex. He believes she never had mono, that it was lyme starting to rear it's ugly head. Since the lyme diagnosis her symptoms make more sense. To be honest with you it did not matter one iota what her diagnosis was, I was putting her on the MP because it is obvious she has a TH1 disease. We are curently still searching for a doctor.
Olivia’s symptoms, some are constant and some come and go.
1. Sleep disturbances – every night wakes up 1 to 3 times
2. Vivid dreams, sometimes disturbing
3. Headaches
4. Light sensitivity to both sun and indoor lighting, especially sensitive to fluorescent light
5. Non-refreshing sleep, always feels fatigued
6. Swollen lymph nodes in neck
7. Sore throats – had tonsils removed due to chronic strep
8. Cold extremities
9. Feels cold most of the time
10. Sensitivity to chemical smells, gets headaches
11. Easily gets out of breath, prior to mono was very athletic
12. Brainfog
13. Forgetful
14. Mixes words up when speaking
15. Short term memory loss
16. Low blood pressure/dizzy when standing
17. Very high fevers when ill.
18. Severe knee pain
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Toni L. mother of Olivia, 14 years old, tested positive for Lyme IgM, 04/09 1,25D-49, 25D-37
10/09 25D-27
Started Benicar 10/23/09, Phase 1 11/24/09
reducing D, covered up, zinc oxide, Noirs
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modric
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Posted: Fri Jun 19th, 2009 10:18 |
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Toni, so has she started with MP already?
Finding IgM antibodies without IgG antibodies on Western-Blot testing in patients with the disease lasting over a month is not enough for diagnosis; this result is often false positive, according to CDC.
The man I'm talking about has this:
- 3 CFS bands
- 2 blood bands
- explanation: 1 oligoclonal band
- CFS proteins = 43 (15-45), so high-normal
I guess this speaks for a mild inflammation in the central nervous system; there's no evidence of inflammation in the blood, except some PR-3 antibodies.
I'm interested in lab results ...anyone....cortisol, thyroxin, EBV, vit D, calcium...to see if some pattern appears in all cases.
____________________
About man,47,US (not me): back of the head pain, fatigue on exertion, poor appetite, gaining weight, cold limbs. 25-D 10 ng/ml, Ca,P,iron = normal-low, testosterone low, cortisol normal-low, EBV EBNA IgG 560:1.
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Toni L.
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Posted: Fri Jun 19th, 2009 13:53 |
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I agree about the tests. But since she has so many symptoms we are going to go forward with the MP. For us a diagnosis is not so important at this point. She is suffering from some type of inflammatory disease and after months of research and talking to people on forums all over the internet, the MP people are the only ones getting results.
We are still searching for an MP doctor for Olivia. It has been a frustrating journey, but I will never stop until I find that doctor.
Good luck in your quest for answers.
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Toni L. mother of Olivia, 14 years old, tested positive for Lyme IgM, 04/09 1,25D-49, 25D-37
10/09 25D-27
Started Benicar 10/23/09, Phase 1 11/24/09
reducing D, covered up, zinc oxide, Noirs
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Joyful
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Posted: Fri Jun 19th, 2009 16:25 |
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Hi Toni. 
I have experienced much of what you have described in Olivia. I think I have 15 of the 18 symptoms you listed for her.
I also have suspected a previous lyme infection that my immune system never fully cleared. And the disabling symptoms appear to have been triggered by lots of stress combined with a new exposure to lyme and a course of prednisone (for the rashing...if only I had known not to do that).
I have heard that the defense department has determined that the Gulf War Syndrome has affected 25% of all veterans of the Gulf War and that the common factors were a suppressed immune function from extreme stress combined with multiple vacinations given concurrently. Does that tell you anything?
Some of the LLMDs and ME/CFS doctors are starting to say that their chronic cases begin with an already compromised immune system.
Isn't it good to know that the MP is working to address the root cause? 
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Jon Paul Jones
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Posted: Fri Jun 19th, 2009 18:15 |
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QUESTIONS:
1. Could low vit D be due to insulin resistance (elevated glucose, obesity, high LDL and triglycerides)?
2. Can be low vit D and low testosterone (and low-normal cortisol) related?
Modric,
I do not know the answer to those specific questions, however, low 25d can be a result of high 125d.
http://www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pmcentrez&artid=425325
A high 125d is a good indication of TH1 disease. I'm assuming the D level you listed is the 25d. Here's info on the two types of d tests:
http://www.marshallprotocol.com/forum2/366.html
Also, since the 25d is so low, he's in a good place to be on the MP, because high levels of 25d suppress the immune system and hamper the MP's effectiveness:
http://www.marshallprotocol.com/forum32/1599.html
Last edited on Fri Jun 19th, 2009 18:19 by Jon Paul Jones
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depression, allergies, Raynaud's, carpal tunnel, daily headaches, stopped up ears, tinnitus, prostatitis, hypertension, psoriasis 125D48/25D38(Nov08) 25D11(Apr09) 25D7(Dec09) Ph1Feb09 Ph2May09
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modric
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Posted: Fri Jun 19th, 2009 18:31 |
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| OK, yes I was thinking about this. Do all "usual" laboratories check 1-25vitD or he should send it to some specific lab? Last edited on Fri Jun 19th, 2009 18:33 by modric
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About man,47,US (not me): back of the head pain, fatigue on exertion, poor appetite, gaining weight, cold limbs. 25-D 10 ng/ml, Ca,P,iron = normal-low, testosterone low, cortisol normal-low, EBV EBNA IgG 560:1.
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Jon Paul Jones
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Posted: Fri Jun 19th, 2009 18:40 |
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| You probably have to request the 125d test rather than just say "get a d test". I had to specifically request both 25d and 125d. When I did the tests, Quest was recommended and Labcorps was not. Check that link above for all the info you need about the tests (I think), and the phase 1 guidelines have the info plus a lot more you need to know: http://autoimmunityresearch.org/phase1.pdf Last edited on Fri Jun 19th, 2009 18:42 by Jon Paul Jones
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depression, allergies, Raynaud's, carpal tunnel, daily headaches, stopped up ears, tinnitus, prostatitis, hypertension, psoriasis 125D48/25D38(Nov08) 25D11(Apr09) 25D7(Dec09) Ph1Feb09 Ph2May09
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modric
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Posted: Mon Jun 22nd, 2009 08:30 |
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To Jon Paul Jones and others:
Your vit 1-25-D was elevated? Anyone has 1-25-D elevated? If yes, did you, at the same time, have any lab result revealing lowered immunity or, if anyone wants to reveal other positive lab tests from the same time?
Th1 cells would be lowered in low immunity but does any lab tests this? The man I'm talking about has slightly elevated monocytes both in the blood and CFS, elevated EBV EBNA and VCA, CMV and HHV-6 IgG and antiproteinase 3 (P3-3) antibodies. He haven't had any infection of any type neither before not during this fatigue disorder - so nothing in last 3 years except some unexplained mouth and skin rash. So I'm not sure if he has low immunity..
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About man,47,US (not me): back of the head pain, fatigue on exertion, poor appetite, gaining weight, cold limbs. 25-D 10 ng/ml, Ca,P,iron = normal-low, testosterone low, cortisol normal-low, EBV EBNA IgG 560:1.
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Joyful
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Posted: Mon Jun 22nd, 2009 10:09 |
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Hello modric.
Ongoing studies at the UNR (USA) are showing that normal controls do not have the presence of that many members of the herpes family virus as does the man you are describing, however people with compromised immune systems almost always do.
Also, if by mouth rash you mean "thrush", or an overgrowth of candida in the mouth, that is a common occurrence in patients with low immunity. So that also should aid you in your prognosis.
Helathy people do not seek out medical attention for fatigue. This abnormal type of fatigue can be caused by chronically high levels of immunity related cytokines. (This has been reported to occur in cancer patients treated with interleukins.)
Testing the 1,25-D levels of a fatigued patient provides a relatively accurate insight into the level of inflammation present. (Please see the presentation: Vitamin D metabolites as clinical markers in autoimmune and chronic illness that provides data from a practicing clinician, I believe you will find it most helpful.)
If you are interested in learning more about what tests are considered valuable by Dr. Marshall, please see the new (and in-work) knowledge base page on Diagnostic tests.
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modric
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Posted: Mon Jun 22nd, 2009 11:00 |
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What is the cost of 1-25-D test?
Links above are informative...
Last edited on Mon Jun 22nd, 2009 11:01 by modric
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About man,47,US (not me): back of the head pain, fatigue on exertion, poor appetite, gaining weight, cold limbs. 25-D 10 ng/ml, Ca,P,iron = normal-low, testosterone low, cortisol normal-low, EBV EBNA IgG 560:1.
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Jon Paul Jones
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Posted: Mon Jun 22nd, 2009 17:54 |
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Your vit 1-25-D was elevated? Anyone has 1-25-D elevated? If yes, did you, at the same time, have any lab result revealing lowered immunity or, if anyone wants to reveal other positive lab tests from the same time?
Mine was elevated according to Dr. Marshall's hypothesis, the Merck manual, and a Danish study (if I remember correctly) that Dr. Marshall references, but not according to mainstream medicine which does not currently recognize TH1 illness. I had no other lab tests. When I discovered the MP, I started doing a lot of reading, and not just Dr. Marshall's stuff, and all my problems can be explained by a sick immune system, though the science to prove that is not all there yet. Yes, depression might be caused by a sick immune system, because it has been demonstrated that depressed people have elevated levels of inflammatory cytokines when subjected to stress, and inflammatory cytokines have been linked to seretonin depletion.
So, my decision to do the MP was based on the links between my conditions and the immune system that look very plausible, on my dissatisfaction with current conventional treatments I've tried, and on the testimony of a friend of mine who has said the MP has done wonders for him.
What is the cost of 1-25-D test?
My 125d test was around US $125-$150 and strangely my insurance covered it with no complaints. I had my doctor file it under the fatigue diagnostic code.
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depression, allergies, Raynaud's, carpal tunnel, daily headaches, stopped up ears, tinnitus, prostatitis, hypertension, psoriasis 125D48/25D38(Nov08) 25D11(Apr09) 25D7(Dec09) Ph1Feb09 Ph2May09
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Joyful
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Posted: Mon Jun 22nd, 2009 20:06 |
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Modric, I had my 1,25D tested by Quest labs w/o insurance on the west coast (USA) and was charged $230 out of pocket (2 years ago).  I now know there are good arguments for getting the test done (like the fatigue code Jon's doctor used).
If you are not in the USA, it may be more difficult to find a good lab. If you do not use a known good lab you can't trust the results (the metabolite degrades quickly over time).
Jon, looks like you've done your homework.
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Carricol
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Posted: Mon Jun 22nd, 2009 23:41 |
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Joyful said,
I have heard that the defense department has determined that the Gulf War Syndrome has affected 25% of all veterans of the Gulf War and that the common factors were a suppressed immune function from extreme stress combined with multiple vacinations given concurrently. Does that tell you anything?
Isn't it strange thatWWII vets did not suffer from Gulf War syndrome or any similar illness. I suspect that TH1 illness was not very prevalant back then. My theory is that the syndrome results from stress applied to individuals who already suffer from Th1 illness. In many cases Th1 illness may not have progressed to the point where a diagnosible illness has occurred. Most individuals are young. However, application of the stress to those with the inflamation precipitates the syndrome.
Last edited on Mon Jun 22nd, 2009 23:43 by Carricol
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Sarcoidosis 1-25D 16, 21 Oct 08; Ph1 Nov07, Synthroid, 5-HTP, tyrosine, digestive enzymes, NOIRs lite exp r/t commute cover up, Ph2 Jan 08, Ph 3, 6 May 09, 25D 6, Apr
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modric
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Posted: Tue Jun 23rd, 2009 06:15 |
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Carricol wrote: However, application of the stress to those with the inflamation precipitates the syndrome.
There was a stress and it has obviously triggered his symptoms.
Caricol, can you explain your vit 25-D and 1-25-D history? Have you ever had high 1-25-D?
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About man,47,US (not me): back of the head pain, fatigue on exertion, poor appetite, gaining weight, cold limbs. 25-D 10 ng/ml, Ca,P,iron = normal-low, testosterone low, cortisol normal-low, EBV EBNA IgG 560:1.
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