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Leroybrown
Member
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Posted: Sun Oct 18th, 2009 15:29 |
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Hi there,
That's a LOT of advil - is that all in one dose or spread over the day?
I had been taking advil like candy for chronic back pain, 400mg every 4 -6 hours for a few years. Then I found out advil can be a cause of pure red cell aplasia. My GP says advil is not good for your bone marrow, he prefers tylenol. I gave up advil and will only take it if there's no other choice (such as with a tooth infection).
But I would think if you need all that advil all at once then maybe you need better pain management and should probably talk to your dr.
____________________
Autoimmune Pure Red Cell Aplasia, Jan 2009 * hgb: 82, wbc 1.5
Phase 1: Sept 25/09
25D=25 1,25D=58 Aug 18/09
benicar 40mg q6hrs
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Chris
Moderator
| Joined: | Wed Oct 24th, 2007 |
| Location: | New Jersey USA |
| Posts: | 498 |
| Status: |
Offline
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Posted: Sun Oct 18th, 2009 19:21 |
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I think I'm getting photophobia even though I'm not yet on Benicar. It's about 2 months with no edible D or sunlight and I feel miserable. I'm getting headache every day that is worsened by light. Is that photophobia? Probably time to order the shades. Please advise. I guess this means I'm doing well
That does sound like a successful therapeutic probe. I know it doesn't feel like success.
Order the NOIRs, they don't arrive immediately, and you need to have them on hand to start the MP.
When are you going to get the benicar? Increasing the benicar is the first step in trying to handle immunopathology, and you don't have any. Going further into immunopathology without the protection of benicar is something you REALLY need to reconsider and talk about with a doctor.
Phase 1
Immunopathology tutorial
--Chris
____________________
sarcoid since 1983 (or much earlier), MP since summer 2004 Chris' story
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ajbot
Member
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Posted: Mon Oct 19th, 2009 00:53 |
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Chris,
I'll order the NoIRs tomorrow. Today I used Revo sunglasses all day and felt markedly better, the first time all week. Prior I had not been using the glasses. Light definitely increases the headache directly to the intensity.
Univ NC Chapel Hill refused to supervise the MP so last week I visited at NP-MD clinic who was agreeable on the phone and we are going to follow up in about a week when they will have my UNC records and 1,25D 25D bloodwork results. I will be their first MP patient. That doctor's file link went a long way in convincing them that this is a real treatment. The phase 1 document just didn't have the clarity and influence. Anyway, the NP is checking with the head MD to make sure they'll supervise it so I have to wait for their opinion. If they won't go for it I'm back to square one.
The sunglasses literally feel like I am putting an icepack on my eyes. The relief is that good. Unfortunately they are only partials (slim frames).
If all goes well I should be on the benecar in a week or so. Enough time to get the NoIRs.
I am very thankful for the MP and the help of all the moderators here. If it weren't for you we would all die with this infection.
I heard that the phase 2 trial showed a 90% success rate. What conditions were tested and how long did it run for? Why didn't the 10% respond?
Also, I spoke to the UNC rheumatologist and he said that although he won't supervise a MP trial he would support my filing for workman's compensation on the basis that I contracted chronic fatigue from the needlestick. I think that's really fortunate. If anyone else has a similar exposure make sure you file incident reports and a workman's comp claim since it is a lot better than disability.
Final thought, How much pain relief can I expect with benecar?
L Brown,
Without sunglasses I have severe headache so I would take 600 mg Advil every five hours stacked with 1-2 tylenols between. It is much better with the sunglasses on. The immunopathology's onset has been slow and constant. It took me 2 months to get to this point with headaches. I can see a lot of floating bacteria in my field of vision against clouds, much more than normal. I am assuming that these might be the cwd bugs that have taken up residence.
____________________
Chronic fatigue syndrome, depression, anxiety
-Initial (09SEP3) 1,25D 63 pg/ml. No intial 25D
-Pre-phase 1a (10OCT09): 25D 35 ng/ml. 1,25D 50 pg/ml
-Pre-phase 1b (02FEB2010) 25D 19 ng/ml. 1,25D 53 pg/ml.
-Benicar 40mgQ6h'09FEB10
-Minocycline 50 m
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ajbot
Member
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Posted: Mon Oct 19th, 2009 00:54 |
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Chris,
I'll order the NoIRs tomorrow. Today I used Revo sunglasses all day and felt markedly better, the first time all week. Prior I had not been using the glasses. Light definitely increases the headache directly to the intensity.
I'm glad the probe is successful and I have a treatment direction now. My symptoms matched the MP descriptions so given that all the other diseases were ruled out it made sense that I had TH1 infection because of the chronically tender submandibular lymph nodes in the face of no immunodeficiency state.
Univ NC Chapel Hill refused to supervise the MP so last week I visited at NP-MD clinic who was agreeable on the phone and we are going to follow up in about a week when they will have my UNC records and 1,25D 25D bloodwork results. I will be their first MP patient. That doctor's file link went a long way in convincing them that this is a real treatment. The phase 1 document just didn't have the clarity and influence. Anyway, the NP is checking with the head MD to make sure they'll supervise it so I have to wait for their opinion. If they won't go for it I'm back to square one.
The sunglasses literally feel like I am putting an icepack on my eyes. The relief is that good. Unfortunately they are only partials (slim frames).
If all goes well I should be on the benecar in a week or so. Enough time to get the NoIRs.
I am very thankful for the MP and the help of all the moderators here. If it weren't for you we would all die with this infection. It is sickening to think that we have to battle the medical establishment just to get treatment while they use drugs off label all the time for other conditions.
I heard that the phase 2 trial showed a 90% success rate. What conditions were tested and how long did it run for? Why didn't the 10% respond?
Low carb eating is tough! I have depression and panic attacks, but am not on antidepressants now because I saw that the side effects looked exactly like the immunopathology symptoms. If you don't believe me just look up Effexor. I have been on probably 5 anti-depressant trials and the side effects are similar: tinnitis, sexual dysfunction, joint pains, etc. I sent my psychiatrist the MP information and told him that I wanted him to review it before I tried any more happy pills because the CFS treatment is the most important thing now. He agrees.
Also, I spoke to the UNC rheumatologist and he said that although he won't supervise a MP trial he would support my filing for workman's compensation on the basis that I contracted chronic fatigue from the needlestick. I think that's really fortunate. If anyone else has a similar exposure make sure you file incident reports and a workman's comp claim since it is a lot better than disability.
Final thought, How much pain relief can I expect with benecar?
L Brown,
Without sunglasses I have severe headache so I would take 600 mg Advil every five hours stacked with 1-2 tylenols between. It is much better with the sunglasses on. The immunopathology's onset has been slow and constant. It took me 2 months to get to this point with headaches. I can see a lot of floating bacteria in my field of vision against clouds, much more than normal. I am assuming that these might be the cwd bugs that have taken up residence.
Last edited on Mon Oct 19th, 2009 01:02 by ajbot
____________________
Chronic fatigue syndrome, depression, anxiety
-Initial (09SEP3) 1,25D 63 pg/ml. No intial 25D
-Pre-phase 1a (10OCT09): 25D 35 ng/ml. 1,25D 50 pg/ml
-Pre-phase 1b (02FEB2010) 25D 19 ng/ml. 1,25D 53 pg/ml.
-Benicar 40mgQ6h'09FEB10
-Minocycline 50 m
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Chris
Moderator
| Joined: | Wed Oct 24th, 2007 |
| Location: | New Jersey USA |
| Posts: | 498 |
| Status: |
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Posted: Mon Oct 19th, 2009 17:12 |
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Why didn't the 10% respond? That's unknown at this time. Some folks drop out due to the rigors. And some folks never quite believe they need to follow the MP as closely as they do. And finally, it may be that there are bugs that aren't addressed by the MP. As noted by Dr Marshall, parts of the science are imponderably complex. The MP does require you to have something left of an immune system. You can be too far gone for it to work.
How much pain relief can I expect with benecar?
That's varies by patient. It does reduce the D1,25, which is related to your light-induced headaches. There's a link somewhere that states that some see no change, some see improvement, and some see the symptoms get worse. I think it's a 50/25/25 mix. Personally (and I stress this is personal opinion) I think Benicar tends to make the not-so-ill feel worse as it exposes sub-clinical trouble, and the worse-off feel better as it calms the existing cytokine storms and high D1,25 levels.
The floaters you have in your eye have been noted in other MP patients to resolve. I'll leave the search for links on that up to you. I've got to get to work now.
____________________
sarcoid since 1983 (or much earlier), MP since summer 2004 Chris' story
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ajbot
Member
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Posted: Mon Oct 19th, 2009 17:43 |
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| Thanks Chris. I ordered the NoIRs this morning. I'll keep posting my progress and additional questions.
____________________
Chronic fatigue syndrome, depression, anxiety
-Initial (09SEP3) 1,25D 63 pg/ml. No intial 25D
-Pre-phase 1a (10OCT09): 25D 35 ng/ml. 1,25D 50 pg/ml
-Pre-phase 1b (02FEB2010) 25D 19 ng/ml. 1,25D 53 pg/ml.
-Benicar 40mgQ6h'09FEB10
-Minocycline 50 m
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ajbot
Member
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Posted: Sat Oct 24th, 2009 02:45 |
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More questions...
I found a good sunscreen called Baby Blanket that has 2.6% titanium dioxide and has a reasonable price (24 oz for $20). The sunscreen recommendations are for 3% zinc or titanium. Is this sunscreen ok to use?
I was reading a critique about MP that said that Dr. Marshall is extrapolating that all TH1 infection is due to excess vitamin D when he only had data on sarcoidosis. Are there any threads giving literature on bacteria changing vit D metabolism?
The article warned that people on the MP were giving themselves muscle weakness by letting their oral vit D get low and this was being mistakenly attributed to the TH1 bacterial infection. I had muscle weakness prior to stopping vit D that was progressive so i don't buy it. I did look up symptoms from low D and they were muscle weakness and bone pain. I did get a few twinges in joints but they aren't constant. Muscle weakness doesn't seem any worse by stopping vit D than it was before, however my light sensitivity and headaches are a lot worse.
Still waiting for my nurse practitioner to green light the benicar. Wearing sunglasses constantly is greatly reducing the baseline headache intensity and frequency. Next I'm going to have to start laughing more, hello comedy dvds.
____________________
Chronic fatigue syndrome, depression, anxiety
-Initial (09SEP3) 1,25D 63 pg/ml. No intial 25D
-Pre-phase 1a (10OCT09): 25D 35 ng/ml. 1,25D 50 pg/ml
-Pre-phase 1b (02FEB2010) 25D 19 ng/ml. 1,25D 53 pg/ml.
-Benicar 40mgQ6h'09FEB10
-Minocycline 50 m
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Chris
Moderator
| Joined: | Wed Oct 24th, 2007 |
| Location: | New Jersey USA |
| Posts: | 498 |
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Posted: Sun Oct 25th, 2009 17:40 |
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The mimium ZO% noted in the sunscreen overview is 3%. 2.6% is low.
http://www.marshallprotocol.com/view_topic.php?id=2957&forum_id=32&jump_to=140087#p140087
I was reading a critique about MP that said that Dr. Marshall is extrapolating that all TH1 infection is due to excess vitamin D when he only had data on sarcoidosis. Are there any threads giving literature on bacteria changing vit D metabolism?
They've got it wrong. The excess vitamin D doesn't cause this mess, but it certainly doesn't help. All the auto-immune diseases were around long before we started supplementing with vitamin D. Look at Capt Tom Perez's presentation at Porto for numbers on disease other than sarcoid http://mpkb.org/doku.php/home:publications:perez_congress_on_autoimmunity_2008 for reports on other diseases than sarcoid.
And read J. Waterhouse's discussion of Vitamin D as an immunosuppressant. http://www.townsendletter.com/Jan2009/vitaminD0109.htm
Suppressing the immune system, as vitamin D does, doesn't cause anything directly. It allows everything indirectly. It's not a direct cause of sarcoid, or lupus, or arthritis, but it allows in the bacteria that do cause those things. That seems to be a small complication in the idea of disease causation, but apparently some folks can't get beyond the simple 2 factors of a single cause and a single effect. That doesn't even always work in automotive mechanics, why anybody would think it's enough in biochemistry is beyond me.
As far as the 'symptoms of low D', the doctors are mistaking cause and effect again. There are studies showing a correlation between low D and TH1 symptoms. But that's only a correlation, and it's quite illogical to say it's causation. I can show a correlation between low pressure in the cities water lines and broken water mains. The low pressure didn't cause the break and higher pressure won't fix it. There's also a correlation between low pressure and large fires, when the fire fighters draw a lot of water. In this case, low pressure didn't cause the problem, but high pressure will help fix it faster. It really really matters what the underlying mechanism is that caused the correlation. And Dr Marshall has explained the mechanism that is behind the correlation of low D and TH1 symptoms. And adding more D won't help.
In regard to the bacteria and the VDR, the recent presentation (see http://www.youtube.com/user/DrTrevorMarshall#p/u/1/y8AfUg3aJVk ) on VDR and cancer talks about how Borrelia and other bugs block/stop/downregulate the VDR.
Last edited on Mon Oct 26th, 2009 07:22 by
____________________
sarcoid since 1983 (or much earlier), MP since summer 2004 Chris' story
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ajbot
Member
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Posted: Mon Oct 26th, 2009 00:35 |
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Chris,
This link brings up a blank page.
http://mpkb.org/doku.php/home:publications:perez_congress_on_autoimmunity_2008
The percentage you cited was for zinc not titanium. I was wondering if the titanium % needs to be 3% or perhaps might be different.
Other than that, the rest of your post makes sense.
The link has been updated.Last edited on Mon Oct 26th, 2009 07:20 by
____________________
Chronic fatigue syndrome, depression, anxiety
-Initial (09SEP3) 1,25D 63 pg/ml. No intial 25D
-Pre-phase 1a (10OCT09): 25D 35 ng/ml. 1,25D 50 pg/ml
-Pre-phase 1b (02FEB2010) 25D 19 ng/ml. 1,25D 53 pg/ml.
-Benicar 40mgQ6h'09FEB10
-Minocycline 50 m
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IngeD
Moderator
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Posted: Mon Oct 26th, 2009 10:17 |
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Hi AJ. The link worked for me:
Tom Perez Presentation
Going into Google I also found a youtube version of the presentation ( I used Tom Perez Porto as search criteria):
Tom Perez Presentation on Youtube
The advantage with the first link is it also gives you the transcript.
Kind Regards, IngeD
____________________
Rickettsiosis;PerNeurop;Chron Bronch&cough; adhesions; IBS; pre-diabetes; IR; HTN; 1,25-D of 50.83 pg/ml;Benicar 40mg q6h start 24Jan07 Mod Ph2 start 28Mar07;25D(ng/ml):26.4 19Dec06;16.4 24Mar07;12.8 22Jun07
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ajbot
Member
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Posted: Mon Oct 26th, 2009 17:00 |
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IngeD,
The link you provided worked, thanks. I see from the statistics that I have a 60% chance of responding to the treatment based on the line for chronic fatigue syndrome. I think Chris said that people can be so sick they never recover. It sounds like the "you can't unfry an egg" saying. Hopefully only having this for 1 year I'll be in the favorable group.
____________________
Chronic fatigue syndrome, depression, anxiety
-Initial (09SEP3) 1,25D 63 pg/ml. No intial 25D
-Pre-phase 1a (10OCT09): 25D 35 ng/ml. 1,25D 50 pg/ml
-Pre-phase 1b (02FEB2010) 25D 19 ng/ml. 1,25D 53 pg/ml.
-Benicar 40mgQ6h'09FEB10
-Minocycline 50 m
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IngeD
Moderator
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Posted: Mon Oct 26th, 2009 18:16 |
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Hi ajbot. I guess it makes sense that the longer you have been ill with chronic immune system problems and the more of these you have gathered over the years a) the more pathogens need to be killed off and b) the sicker your immune system is. Then there is the factor of how weak you are...the sicker you are the harder it may be to tolerate the IP. As Chris pointed out we also know that not all who start the MP follow it as strictly as is necessary.
If your diagnosis is fairly recent you should have a good chance however on your MP journey you may discover that you have been ill far longer than you realise. We get so used to living with symptoms that sometimes we no longer recognise them to be a problem until one day we wake up and they are gone...or we read someone else reporting improvements and realise ... oh ...yes....I don't feel that any more either 
All the best. IngeD
____________________
Rickettsiosis;PerNeurop;Chron Bronch&cough; adhesions; IBS; pre-diabetes; IR; HTN; 1,25-D of 50.83 pg/ml;Benicar 40mg q6h start 24Jan07 Mod Ph2 start 28Mar07;25D(ng/ml):26.4 19Dec06;16.4 24Mar07;12.8 22Jun07
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ajbot
Member
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Posted: Mon Oct 26th, 2009 20:33 |
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I'm getting a lot of resistance here in trying to find a physician. So far two offices have refused. What a scam, I have to have my insurance company pay them $200 just to turn me down. I'm starting to doubt whether I'll be able to find a physician in Raleigh to treat me. Help! There is nobody on the list doing it here.
I just received my latest D blood tests. The MD said they were normal. On Aug 27, 09 I was 1,25D at 63/64. 25D wasn't tested. On 10/15/09 my 25D tested at 35 (assuming nmol/L) and 1,25D was at 50 (pcg/L) How is this for 2.5 months with no benecar? Well this confirms that my symptoms have nothing to do with low Vitamin D since my blood test level isn't bad enough to generate a deficiency yet my symptoms are in full force. Am I doing well in dropping my D levels? Can someone please interpret these numbers. The page that is supposed to calculate it doesn't work.
Last edited on Mon Oct 26th, 2009 23:45 by ajbot
____________________
Chronic fatigue syndrome, depression, anxiety
-Initial (09SEP3) 1,25D 63 pg/ml. No intial 25D
-Pre-phase 1a (10OCT09): 25D 35 ng/ml. 1,25D 50 pg/ml
-Pre-phase 1b (02FEB2010) 25D 19 ng/ml. 1,25D 53 pg/ml.
-Benicar 40mgQ6h'09FEB10
-Minocycline 50 m
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Cynthia Schnitz
Member
| Joined: | Tue Jul 29th, 2008 |
| Location: | Arizona USA |
| Posts: | 551 |
| Status: |
Offline
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Posted: Tue Oct 27th, 2009 03:31 |
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Please check your copy of the test results for units. In the US, the numbers are generally reported as ng/ml for 25D and pg/ml for 1,25D. Only one test for 1,25D is normally done, and then repeat tests every few months for 25D. So, if your 1,25D was in the 60s, that is high, mine was 43 pg/ml, which was high, but only barely.
You can get an analysis of your D levels here:
http://curemyth1.org/forum5/
Please be very careful of what you print when you refer to your D levels, so we don't misconstrue what results you really have. Cynthia
____________________
Ph1 10/08 Ph2 12/08 Ph3 6/09 125/25D 47/43 preMP 25D14 12/09 Calcium anomaly(gone?),Spondylitis,early Diverticulosis,early AMD,TypeII Diabetes(?) MyStory
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ajbot
Member
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Posted: Tue Oct 27th, 2009 18:57 |
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Ok, I called and got the units.
Aug 27, 09 I was 1,25D at 63 pg/ml (max nrm 64)
Oct 15, my 25D tested at 35 ng/ml (nrm range 30-85), 1,25D was at 50 pcg/L (nrm range 15-75)
Not on benecar yet. Just made an appointment with a MD 3 hrs away who does MP. Off label meds are not covered by insurance.
____________________
Chronic fatigue syndrome, depression, anxiety
-Initial (09SEP3) 1,25D 63 pg/ml. No intial 25D
-Pre-phase 1a (10OCT09): 25D 35 ng/ml. 1,25D 50 pg/ml
-Pre-phase 1b (02FEB2010) 25D 19 ng/ml. 1,25D 53 pg/ml.
-Benicar 40mgQ6h'09FEB10
-Minocycline 50 m
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ajbot
Member
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Posted: Wed Oct 28th, 2009 14:26 |
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Interpretation says my 25D is still high by 5 units. I calculated a 6% drop in 1,25D in 6 weeks with no benecar so I think its going well and that was before I gave up baked goods and soy oil.
Given my D levels are still "normal" there's no way my symptoms can be from low D. So much for that half baked criticism of MP. 1,25 D is still very high.
I have an appointment to see a MP friendly MD 11NOV09.
Last edited on Wed Oct 28th, 2009 14:28 by ajbot
____________________
Chronic fatigue syndrome, depression, anxiety
-Initial (09SEP3) 1,25D 63 pg/ml. No intial 25D
-Pre-phase 1a (10OCT09): 25D 35 ng/ml. 1,25D 50 pg/ml
-Pre-phase 1b (02FEB2010) 25D 19 ng/ml. 1,25D 53 pg/ml.
-Benicar 40mgQ6h'09FEB10
-Minocycline 50 m
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ajbot
Member
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Posted: Tue Nov 3rd, 2009 03:52 |
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I'm really starting to hate the medical doctors in Raleigh, NC. My psychiatrist is a resident at the University of North Carolina. After trying several anti-depressants that all made me sick with various side effects he was about to put me on Effexor. After reading the MP notes I realized that Effexor would screw up my progress by interfering with the immune function so I called the psychiatrist, told him my concern and asked him to review the MP info. I read that SAMe was acceptable but could raise homocysteine levels so I suggested we supplement with B6, B12 to keep that under control. He said ok. Well his supervisor didn't approve of the treatment because it wasn't a pharmaceutical. An internist resident at UNC wasn't allowed to put me on the MP because it was off label. These physicians are worthless. Why do we pay them?
____________________
Chronic fatigue syndrome, depression, anxiety
-Initial (09SEP3) 1,25D 63 pg/ml. No intial 25D
-Pre-phase 1a (10OCT09): 25D 35 ng/ml. 1,25D 50 pg/ml
-Pre-phase 1b (02FEB2010) 25D 19 ng/ml. 1,25D 53 pg/ml.
-Benicar 40mgQ6h'09FEB10
-Minocycline 50 m
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ajbot
Member
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Posted: Wed Nov 4th, 2009 23:21 |
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| One of the articles says not to take Calcium with minocycline. Why is that?
____________________
Chronic fatigue syndrome, depression, anxiety
-Initial (09SEP3) 1,25D 63 pg/ml. No intial 25D
-Pre-phase 1a (10OCT09): 25D 35 ng/ml. 1,25D 50 pg/ml
-Pre-phase 1b (02FEB2010) 25D 19 ng/ml. 1,25D 53 pg/ml.
-Benicar 40mgQ6h'09FEB10
-Minocycline 50 m
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Joyful
Foundation Staff
| Joined: | Fri Oct 19th, 2007 |
| Location: | USA |
| Posts: | 580 |
| Status: |
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Posted: Thu Nov 5th, 2009 09:14 |
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I did a Yahoo search to see if there was a quick answer for you.
This was the top article...
http://health.yahoo.com/skinconditions-medications/minocycline/healthwise--d00110a1.html
I believe your answer is there.
____________________
MP Stories | Bacteriality | MP Search | MP Knowledge Base
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ajbot
Member
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Posted: Thu Nov 5th, 2009 12:26 |
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"Do not take iron supplements, multivitamins, calcium supplements, antacids, or laxatives within 2 hours before or after taking minocycline. These products can make minocycline less effective."
Well with dosing minocycline at every 2 days there is a huge window to take B12, B6 and minerals (without iron). I should be fine. Someone should post this info in the thread otherwise people will think that calcium is contraindicated when taking minocycline.
Thanks Joyful.
____________________
Chronic fatigue syndrome, depression, anxiety
-Initial (09SEP3) 1,25D 63 pg/ml. No intial 25D
-Pre-phase 1a (10OCT09): 25D 35 ng/ml. 1,25D 50 pg/ml
-Pre-phase 1b (02FEB2010) 25D 19 ng/ml. 1,25D 53 pg/ml.
-Benicar 40mgQ6h'09FEB10
-Minocycline 50 m
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