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DrRobertWEdelman
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Posted: Thu Sep 18th, 2008 20:12 |
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My husband was diagnoses with sarcoid in 1989. It has been quiet since then. He is having some bad days now....almost for a month where he is pretty much bed ridden due to nausea, shakes, high blood pressure, high blood sugar......he has NO energy....no appetite.
He did take the D levels...and they were (according to the nurse on this site) somewhat elevated...not necessarily showing a very high number. His ace levels were not really elevated either.
I am having a hard time believing that it is ALL his sarcoids that is causing him to feel this way. We have (for 5 weeks now) watched his diet. He has NOT been out in the sun. He is taking phenergan for his nausea. I'm at a total loss as his care taker as to what to do to make this all go away.
HELP!! Please give me some insite in to what to do at this point. I feel as though other diseases have to be ruled out...and not but all your baskets on the sarcoid. Am I wrong???
He has no energy to even go for blood work, or other tests (i.e. stress test) to rule other things out. He is very hesitant to go into the "system" to get these tests done, but I so want answers.
Where do we go from here? The "system" is so NOT educated with sarcoidosis...they are for sure telling him it's other things...or to take prednisone.
Where do we turn. Thanks for letting me vent...and I hope that we can get some answers from others of you that have been through this.
[spaces added by moderator for reading/response ease]
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DR. Bob Edelman
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JRFoutin
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| Joined: | Sat Oct 13th, 2007 |
| Location: | Oregon USA |
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Posted: Thu Sep 18th, 2008 21:09 |
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DrRobertWEdelman,
Thank you for your post. This is your thread to ask questions and you will want to post your questions one after the other for easy review.
You had labs drawn by LabCorp and your test results were iffy. That is no big surprise. My doctor and I did a little test sending my sample, drawn and prepped exactly the same and sent to both LabCorp and Quest at the same time. My doctor wanted to see if there was a difference because I had been quite adamant about Quest and he was just used to doing everything through LabCorp. The variance was remarkable with an approximate 20pt difference in the 1,25D test. This was just as the moderators had predicted. The Quest Lab had the higher number while the LabCorp test had a very low figure. Please keep that in mind when you have doubts about your blood test results.
Hypervitaminosis-D Symptoms
Might help both you and your family physician get a handle on what LabCorp very easily might have failed to tell you correctly.
Now, on to your questions. Your husband's symptoms look remarkably like mine when I was most sick, just before recieving the Sarcoidosis dx, given with a heaping helping of Prednisone to go along with that (it was before the MP, and since consensus still hasn't figured out the truth yet, it is no surprise your husband has still been offered the same thing). Glad you found this site.
Before you spend dollars and inefficient time on a gazillion tests to rule out all the many possible disease titles for the face of Sarc (one of many subcategories of Th1 inflammatory disease), you might want to look into these info sets first:
You will need a doctor to work with you. This is not an easy task but something you can work on immediately. I suggest giving your family physician (not the specialist) the first option, as s/he is already qualified to monitor your husband's health and prescribe the necessary medications. If your family physician is not able to for any reason, then use a shotgun approach and contact as many doctor's offices as possible with your request. Helpful information:
SUGGESTIONS TO GET YOUR DOCTOR ON BOARD WITH THE MP
Please add your suggestions/stories
Letter of introduction for your MP supportive doctor
PAPERS AND PRESENTATIONS FOR PHYSICIANS
Links to Dr. Marshall's papers & presentations, research team papers, FDA applications, Conference DVDs
And certainly, consider making preparations to address light and diet modifications that support the Marshall Protocol. Helpful information:
Please use the alphabetical index of required reading topics, called the FAQ to quickly find links to information sets that can help you learn more about the Marshall Protocol right away. What you know can save a very important life.
If you are a medical professional, you can apply for membership on the study site in the Private Section for Health Professionals. Membership is still open for medical professionals. If that "Dr" is a medical professional status, then take action and get on that site immediately.
Best to you and your Husband at this time--Janet
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12/99:Sarc, 9/00:noPred, Mar05:no-D+lo-lght+NoIRs, 8/09/05 began MP. MP ph3 yr3 and getting better every day.
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DrRobertWEdelman
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Posted: Fri Sep 19th, 2008 00:33 |
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Hi Janet. I can't thank you enough for getting back to me (us). My husband was glad to hear that others have had the SAME symptoms also.
He wanted to know if you started with the full dose of Benicar? Or did you start low and work your way up? He is hesitant to start with the full dose and feel any worse (possible Herx reaction) that he does now. Thanks for being there for us. Marlene
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DR. Bob Edelman
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JoshR
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Posted: Fri Sep 19th, 2008 02:08 |
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Hi Marlene,
Taking the full dose of Benicar will actually cause less problems than taking less. See Why shouldn't we ramp up the dose of Benicar?.
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5/6 CFS criteria, 125D36 Ph1Jul08 Ph2Sep08 25D8(Sep08) NoIRs covered up (except hands) low lux home minimal light exp r/t work
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JRFoutin
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Posted: Fri Sep 19th, 2008 23:53 |
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Marlene,
I'll tell you about something I experienced that will help you get right to the task of taking the correct dose to protect from the get-go.
The first doctor I had ordered 1/3 the amount described in Marshall Protocol Phase 1 Guidelines. So, being inexperienced, I took less. It was not a pretty thing that happened and I had the worst neuro herx in the middle of the night shortly after, with my head feeling like it was being stretched and distorted in several different directions all at once. I was an emotional train wreck and physically I was hot, sweaty and disoriented. Not good at all.
Needless to say, that was the last day at that dose level, ever. I hired a new doctor that supported the MP as written, and started at a full dose even though I thought "if a little whacked me out, I sure hope a full day's dose won't be worse!" But I took a leap of faith and everything that happened after that was as the science predicts. Manageable, as it should be.
From personal experience, I can tell you that the full dose is a safety shield and a protection not available in less than the full dose.
This is one of those times when tippy-toeing around a requirement can get you into a whole lot of trouble. Just don't go there. If you are going to do the MP, then do it right from day one.
Best to you and your husband Marlene--Janet
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12/99:Sarc, 9/00:noPred, Mar05:no-D+lo-lght+NoIRs, 8/09/05 began MP. MP ph3 yr3 and getting better every day.
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DrRobertWEdelman
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Posted: Thu Oct 23rd, 2008 16:58 |
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Please give me some feedback in to helping my husband. He is still continuously nauseous, has headaches, is anxious and is having trouble sleeping. Please let us know if there are any "natural" remedies for any of this. If NOT natural (we prefer to go that way)...what is recommended.
Also, what is your feeling on Melatonin for any of this? Thank you.
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DR. Bob Edelman
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Rico
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Posted: Thu Oct 23rd, 2008 18:03 |
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This site is meant to help people understand Th1 diseases and how people can recover with the Marshall Protocol. I encourage you to read these:
What is the Marshall Protocol?
PHASE ONE of the Marshall Protocol
Simple Explanations
Medications To Avoid on the Marshall Protocol
Melatonin
The symptoms you describe are not uncommon to people suffering from Th1 disease. The D-metabolites tests may provide a clue as to the cause of your husband's problems.
Vitamin D Tutuorial
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Essential Info; FAQ; ABC's of MP; Side Topics; Perspectives
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edj2001
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| Joined: | Mon Oct 29th, 2007 |
| Location: | Allen, Texas USA |
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Posted: Thu Oct 23rd, 2008 19:57 |
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Please note Janet's earlier post that there is a site on MP.com specifically for Health Professionals.
You should also post the vitamin D test results for evaluation. See index for instructions. Normal lab ranges may not apply for those of us with Th1 diseases.
Gene
Janet said:
"If you are a medical professional, you can apply for membership on the study site in the Private Section for Health Professionals. Membership is still open for medical professionals. If that "Dr" is a medical professional status, then take action and get on that site immediately."
Admin Note: Marlene and Bob, you have been sent a private message. Thank you.
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Sarcoidosis 1998| MP Dec 05| Gene's Story| About MP| ABC of MP| Perspectives|
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DrRobertWEdelman
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Posted: Tue Oct 28th, 2008 15:35 |
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What do you suggest?? My husband is having trouble sleeping. Then he becomes very shaky from lack of sleep. Please give me some feedback...FAST!!!
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DR. Bob Edelman
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Julia
Advocate (on leave)
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Posted: Tue Oct 28th, 2008 17:14 |
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Marlene,
Please understand that we are all volunteers here, and that our purpose is to help people do the MP. You haven't said whether Bob has started the MP yet, and if he has, what medications he's currently on. That makes it very hard to answer your question!
I note that Bob has also been reporting in the Health Professionals' Forum on the study site. This means that all his questions should be asked there, and he should report his progress and medications if he wants the help of our very experienced team of MP nurses.
To access his progress report, he should click on his link on the study site. To access it again another time, go to the study site MarshallProtocol.com and click 'My Account' at the top of the page and the link will be there 
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Always consult a physician
Essential Info; FAQ; Julia's story
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Sallie Q
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Posted: Tue Oct 28th, 2008 22:04 |
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Marlene
I'm also wondering if Bob has done the first weeks on benicar ?
by the end of my first week I had some remarkable sleeps all through the night (xcept for timer waking me to take the 6 hourly dose). Solid sleeping and waking really refreshed.
I've been chronic fatigued and waking easily for many years, so I don't worry about a good night's sleep (not sure I knew what one was ); and it sure helps not to worry .
When I worry I start to dehydrate so I need to drink a lot of water, particularly now I am on MP so as not to complicate learning about my health reactions (and because I need to drink a lot I now use salt, which I had stopped adding to food before my first husband died, as he worried about too much salt).
About other remedies. Most additional remedies are contra-indicated on the MP and I must say I am amazed that after less than six weeks on MP I am really confident that I function better without the vitamin  tablets and herbals (and omega 3 ) that I took in hopes of controlling my symptoms.
I do hope that when Bob begins to feel the benefits of benicar he can be confident enough to start to relax (I do know how hard it is to relax !! !!)
best wishes Sallie
P.S. being quite sick just before I started back to my job 2 days/week I went on to Benicar 4 hrly instead of 6 hrly. The following week I was anxious and so again took Benicar 4 hrly on each of the two days. Next week I think I will be OK on standard 'conservative' dose of 6 hrly. I suspect the 4 hrly benicar has saved my employment for me. My blood pressure dropped a fair bit the first weeks on benicar and has gone back up a little since and that is the period when 6 out of 14 days i took Benicar 4 hrly.
as far as I'm concerned this treament is a wonderful paradigm shift. 
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fatigue,Sjogrens 1,25D(??)Phase1:20Sep08 NoIRslowLuxEtc 25D13.2(Jly08)independent PCPProfessionalsForum NoAltMeds appendectomy~9yrs b.cancer1990 some calcification old scans.HotFlush20yrs D-dysregulated~60%signs
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DrRobertWEdelman
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Posted: Tue Oct 28th, 2008 23:00 |
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Hi Sally. Thanks for your answer and information. It helps to know that there is HOPE!! Bob is anxious to know if you had symptoms of shaking because of lack of sleep. Also, what Herx reactions to you get from the Benicar?? Were you on any tranquilizers to help you sleep before the Benicar? Do you know...can they still be taken if needed while the Benicar is taken? I can't thank you enough for taking the time...and helping us to understand all of this. Thanks again!!
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DR. Bob Edelman
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DrRobertWEdelman
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Posted: Tue Oct 28th, 2008 23:01 |
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Sorry ...forgot to mention. He HAS NOT started the Benicar as of yet. He has stayed out of the sun...and totally changed his diet so as not to include anything with Vitamin D in it....and has also stopped taking all of his supplements that he was taking to make him feel (so he thought) better.
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DR. Bob Edelman
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Rico
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Posted: Tue Oct 28th, 2008 23:24 |
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Marlene,
Both my wife and I have had sleeping difficulties prior to starting the MP and even during - I've seen my sleeping habits improve and then worsen again after increasing antibiotic doses, but this is all part of immunopathology and attaining recovery.
My wife had upper body "shaking" episodes prior to starting the MP. She hasn't had them since starting the MP. She was diagnosed with Sarcoidosis. She's also had nausea, lack of energy and no appetite, among other symptoms.
I saw benefits from Benicar after taking the first pill. I felt like I hadn't in decades. My wife had a more difficult time. Each person is different.
Will your husband be starting the MP soon?
Rico
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Essential Info; FAQ; ABC's of MP; Side Topics; Perspectives
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patrickburke
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Posted: Tue Oct 28th, 2008 23:27 |
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Marlene,
When I did what you husband has done I.E give up D and light it hit me very hard too! I also experienced the immune response that he is. The only thing that helped me was when I started benicar.
Hope that helps.
Pat.
Should I wear NoIRs, avoid natural light exposure and eliminate vitamin D before starting Benicar?
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Sarcoidosis. MP since May '05. Now living a normal life with normal blood-work and imaging. And STILL improving! Pat's Story|
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DrRobertWEdelman
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Posted: Wed Oct 29th, 2008 01:30 |
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Dear Rico....Can't thank you enough for your words of encouragement and your response to my questions. Bob is going to be starting the Benicar today after speaking with Dr. Marshall. Did your wife have some bad side affects? If so what? Is she still on the Benicar. Did she reduce the amount taken after having the bad time with it. All help is appreciated. Thanks. Marlene
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DR. Bob Edelman
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DrRobertWEdelman
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Posted: Wed Oct 29th, 2008 01:31 |
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Thanks Pat. How was your tolerance of the Benicar? Any side affects? Were you taking the full dose as recommended? Thanks. Marlene
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DR. Bob Edelman
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Rico
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Posted: Wed Oct 29th, 2008 02:12 |
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Marlene,
Both my wife and I have pretty much been on the recommended MP dosage of Benicar from the beginning. In fact, when she has difficulties now (increased herx or if she must go outdoors), she increases the dose as suggested by the protocol and it seems to help.
As far as we can tell, there was no side effect from the Benicar. It's the killing of the pathogens by the immune system (which the Benicar helps activate) that leads to immunopathology and discomfort. This is something one must be willing to accept to eventually attain recovery. Please take the time to read some of the material.
Perhaps these interviews of Sarcoidosis patients having had great improvement on the MP will give you more comfort and encouragement.
Rico
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Essential Info; FAQ; ABC's of MP; Side Topics; Perspectives
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Sallie Q
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Posted: Wed Oct 29th, 2008 03:13 |
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Marlene
I had some extreme light exposure in March this year working in the open sun (I never do normally) because of time limits on a country property, had to get back to town but had to finish piling up the weeeds for destruction first.
In September when I had started minocycline on 25mg I had to rush my husband to hospital, so I was out and about for quite a few days at a time when I was still unsure about dressing for daytime (I started the MP on leave so I would not have to go out of the house before dark).
I then had a day or two when I was quite shakey (not a 'normal' thing for me) but I attributed it to light or sun exposure, which my doctor points out is cumulative.
Since starting Benicar I have only had trouble sleeping after needing to do something which required light expoisure while not properly protected by clothing which passes little or no (..leather) light through; and by high content zinc cream (18%)
It is important to remember that the effects of the sun on the brain through the eyes and the cumulative effects on the skin are not just from direct sun.
Sunlight bounces very well and reflected light could be coming into rooms used by Bob. I was lucky and already had incandescent globes with dimmers in my dine in kitchen, and in the room I have adapted as a cave retreat, but the hallway has skylights and still needs work.. I make sure I wear my NoIRs and duck through quickly even though my spouse did a stirling job with blackout material, some night next week I will get up and close over the 1 inch gaps which allow reflected sun into my bathroom many mornings.
Everyone is different, but I had no herxing whatever from benicar.
I think I herxed on cutting out exposure to secosteroids (vitamin D) because my 25OH D level was only 13 .... pretty close to therapeutic levels where the immune system reactivates ( I think, i'm still a bit wobbley on the science of all this)
I think some people herx on benicar because
although it's primary action is to protect all the bodily organs from inflammatory damage,
it has a secondary action to assist immune receptors to start the immune system functioning where it has been suppressed by other factors like corticosteroids and secosteroids.
The secondary action to promote immune function kicks in at low doses,
I guess that is part of why it is a bad idea not to start on the optimal 6 hourly benicar,
(the prescribing doctor needs to be quite clear on the necessity of benicar at least 3 daily and sometimes much more. Until doctors understand the science they seem to be hung up on the 1 a day dose used to slightly lower blood pressure, and this common usage leads some insurance companies to think more than 1 a day is unusual to the point of not meeting guidelines)
at higher doses like the 4 hourly benecar MPers call on when herxing goes a little too far, Benicar does a backflip and for a short time joins the immunosuppressants
P.S. please do not forget the information Julia gave you earlier to help access Bob's Health Professionals account ( I notice I get a bit overwhelmed and sometimes forget the most obvious things )
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fatigue,Sjogrens 1,25D(??)Phase1:20Sep08 NoIRslowLuxEtc 25D13.2(Jly08)independent PCPProfessionalsForum NoAltMeds appendectomy~9yrs b.cancer1990 some calcification old scans.HotFlush20yrs D-dysregulated~60%signs
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patrickburke
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Posted: Wed Oct 29th, 2008 21:09 |
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Marlene,
I tolerated the Benicar well at full MP dosage. It gave excellent immunopathology and with higher doses more palliation. The IP is what you would call "side effects" if you didn't know better. The knack of the MP is finding the correct balance of all the meds. It should be relatively simple to do though if you follow the phase 1 guidelines exactly.
I take time and hard work to beat these bugs.
Pat.
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Sarcoidosis. MP since May '05. Now living a normal life with normal blood-work and imaging. And STILL improving! Pat's Story|
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