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brian33
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Posted: Thu Oct 9th, 2008 19:29 |
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We previously posted a detailed description of my disorder on an earlier blog. This is a brief description of my disease/disorder: My symptoms started in June of 2007 with minor weakness in right hand and progressed from distal to proximal and then duplicated the pattern in my left hand and arm. It continued to progress and descended into my legs proximal to distal. I have muscle atrophy in all four limbs and widespread fasciculations. I have primarily lower motor neuron involvement. I have no upper motor neuron involvement. At this time my disorder is still progressing. My diagnosis is still unclear, but my doctor is tettering between CIDP (an autoimmune disorder) and PMA (motor neuron disease).
-The date the blood was drawn - 9/23/2008
-Which lab did the tests? - Drawn at Medical College of GA, sent to Mayo Clinic
-Was the 1,25-D sample was frozen for shipment? - Unsure
-How long have you been avoiding foods with vitamin D in them? - I haven't yet
-How long have you been avoiding sun/lights? - I haven't yet
-List all meds, supplements (both prescription and OTC) you have been taking and why. - Prednisone 60 mg every other day for CIDP (currently weaning off); Neurontin 900 mg day for nerve pain and fasciculations; Klonipin 1 mg twice a day for anxiety; Xanax 0.5 mg as needed for anxiety; Centrum One a Day Vitamin.
-When and for how long have you taken prednisone or any other immunosuppressant in any form? - Prednisone since January 2008 and IGG treatment every three weeks since November 2007 (have shown no improvement in my disorder).
-When and for how long did you take Vitamin D supplements (including any vitamin-mineral supplements), omega-3 supplements and/or any kind of fish oil? Centrum One a Day Vitamin since June 24, 2008, and Ensure once a day since April 2008.
-Were you taking Benicar when the sample was drawn? - No
-Were you taking an ARB or or an ACE inhibitor when the sample was drawn? - No
These are my lab results for Vitamin D drawn on 9/23/2008:
25 DOH - 33 ng/ml
1,25 D - 23 pg/ml
Vit D2 - < 4.0 ng/ml
Vit D3 - 33 ng/ml
I am scheduled to have my Vitamin D retested on 11/4/08. By then I will have been off Prednisone effective 10/22/08. Can you please help me interpret these readings?
Thank you.
Brian
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P.Bear R.N.
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Posted: Thu Oct 9th, 2008 21:25 |
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Brian, I would not trust any test results that can not be verified as frozen for the 1,25-D. Since your level of 1,25-D is below the population average I would assume that it is either in error or that you could have significant viral infection that might confound results. Prednisone and high doses of D3 can lower 1,25-D results quite a bit (by 25-40%) as well.
I see nothing in your clinical picture to justify this lower level of 1,25-D. Quest can usually be counted on to perform the test quickly and only on a sample that arrives frozen. Extremely low levels (below 15pg/ml) suggest a severe viral infection such as AIDS or hepatitis.
Although levels above 12pg/ml represent a dominant Th1 inflammatory response and disproves a dominant Th2 response, the population average is 25-29 pg/ml and it is above-average 1,25-D levels (hypervitaminosis-D) that cause many troublesome symptoms.
I would recommend that when you have weaned off the prednisone you be retested by Quest diagnostics for the 1,25-D. In the meantime I would stop all vitamin D intake.
Your 25-D of 33ng/ml can be believed and is high enough to blunt innate immune response and reflects your reported vitamin D supplementation. Because 25-D is immunosuppressive, you need to avoid ALL sources of Vitamin D to get it down to a therapeutic level of 12ng/ml or less. Please see Foods To Avoid and The importance of avoiding vitamin D.
"The 25-D seems to be the most critical factor as to whether the immune system is able to start working. Any level of 25-D above about 20ng/ml is likely to be acting as an immunosuppressant, with an action very similar to that of corticosteroids." Dr. Trevor Marshall, Ph.D.
If you find you have trouble weaning off the prednisone many people have found that it is much easier to do so if taking the higher dose Benicar.
best, P.B.
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Nothing contained in this site is or should be considered, or used as a substitute for, medical advice, diagnosis or treatment by your physician.
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brian33
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Posted: Mon Oct 13th, 2008 18:34 |
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P. B.,
Thank you for your reply.
Will starting to eliminate Vitamin D have an effect on my next blood tests? Will it skew the data? Once I am totally weaned off Prednisone, how long should I wait to have another Vitamin D blood test?
Thank you.
Brian
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P.Bear R.N.
Research Staff
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Posted: Mon Oct 13th, 2008 20:03 |
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Brian, It can take a long time for the 25-D level to drop in some, and is not apt to have a large effect on 1,25-D levels in your case as you avoid D foods since you were not on a really high dose. The prednisone is going to have the most effect on lowering the 1,25-D results. I think it would be fine to have the 1,25-D redrawn at Quest diagnostics a week or two after the prednisone is weaned off. As I said your physician and you may find it much easier for you to wean the prednisone if on a full 40mg q6hr Benicar blockade, but the Benicar would be apt to lower 1,25-D lab results in many (but could be taken into account with analysis).
best, P.B.
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brian33
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Posted: Mon Oct 20th, 2008 16:08 |
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P. B.,
Thank you for your reply.
This past week I began eliminating Vitamin D from my diet and avoiding light, both indoors and outdoors. My question is how critical is it to darken my house indoors? Can I have some light, such as a lamp, or does my room need to be totally dark?
Also, once I start the medicine, how long can I expect to see a difference if this is going to work?
I appreciate your help with this.
Brian
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P.Bear R.N.
Research Staff
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Posted: Tue Oct 21st, 2008 19:57 |
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Brian, You would need to darken indoors before starting Benicar and have the right sunglasses. Read all the FAQs and essential reading on MP site for details. Some find that they get immediate improvements with Benicar and light avoidance alone (but some feel worse if immune system is activated), but some find it can take much longer to notice changes. Once on Mino you can expect to feel worse as immunopathology starts.
best, P.B.
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Nothing contained in this site is or should be considered, or used as a substitute for, medical advice, diagnosis or treatment by your physician.
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brian33
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Posted: Sat Nov 22nd, 2008 20:37 |
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I began the Marshall Protocol and Vitamin D elimination approximately one month ago. I have begun to have herx reactions.
I have been diagnosed with a motor neuron disease, PMA (Progressive Muscle Atrophy), which is a form of ALS. However, my doc is still not completely certain of my diagnosis.
My question is: Can you have a herx reaction with something like PMA, or could I truly have an autoimmune disease?
I would appreciate a reply from you regarding this.
Thanks.
Brian
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P.Bear R.N.
Research Staff
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Posted: Sun Nov 23rd, 2008 01:27 |
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Brian, Please read the fundamentals of the MP and the FAQs. We question the very premise that the body is actually attacking itself in many auto-immune presenting illnesses, but feel the inflammation is caused by infection with CWD forms. Many forms of ALS are apt to be caused by a pervasive systemic infection in our opinion. A herx from a therapeutic probe would be further indication of TH1 infection. The real question in some forms of ALS might be if the patient can eliminate the pathogens fast enough and be able to tolerate the significant immunopathology that is involved. I am sorry that we have not had enough clinical data yet to give you a definitive answer on this. Given that the major treatment approaches previously to ALS have not been very successful; it would be up to you and your physician if you want to give MP approach a chance to succeed. Any treatment option in such an illness is a difficult decision.
best, P.B.
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brian33
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Posted: Fri Dec 26th, 2008 15:08 |
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1. Is it normal to have a pulse rate over 100 when lying down at rest? My blood pressure has been running on average 80/50, and my pulse rate averaging from 100 to 115. My doctor is concerned about my pulse rate and low blood pressue readings. What can I tell him to ease his mind?
2. How long does it usually take for the Zith to start causing a Herx? Is it immediate or does it take a week or two to get into your system? I began Phase II 12/17/08.
3. Is it normal for your neurological symptoms to worsen or speed up while on the Marshall Protocol? My neurological symptoms have increased rapidly.
4. I have had trouble sleeping since being on the Marshall Protocol. My doctor prescribed Ambien. Is Ambien a contraindication of the Marshall Protocol?
Thanks.
Brian
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