| Author | Post |
|---|
R.Bartley
Member in Phase 3
|
Posted: Fri Jun 24th, 2005 12:50 |
|
I've been quite well for almost 3 weeks on the full benicar dose. Had blood drawn for both D tests earlier this week, for another baseline. Will post in 7-10 days. Took first 25mg dose of minocycline today, 6/24/05. Will continue every other day on this dose until any herx symptoms subside, before increasing. Continuing Benicar 40mg every 8 hrs. It's a very good day!  The summer soltice past earlier this week; here in the Northern hemisphere the daylight hours are decreasing! It's an appropriate time to start the full protocol.Last edited on Fri Jun 24th, 2005 12:55 by R.Bartley
____________________
Sarcoidosis/lymphnodes joint-pain edema 125D53 Ph1Mar07 Ph2Aug05 Ph3Jan06 NoIRs/Julbo covered up low lux home light exp r/t work 25D11(Mar08)
|
rc45guy
Member in Phase 3
| Joined: | Wed May 11th, 2005 |
| Location: | |
| Posts: | 103 |
| Status: |
Offline
|
|
Posted: Fri Jun 24th, 2005 18:54 |
|
| Hey, sounds good! I'm on the 2nd week at 50mg with very light Herx. Correct me if I'm wrong, but aren't we supposed to take the abx until our Herx symptoms are stable and tolerable, not necessarily subsided?
____________________
Dx - Sarc Mar03, CFS, DM1 Jan89, insulin pump, 6.8 HbA1c; No add'l meds; D tests May05:1,25D=55 & 25D<=5, avoiding light & D, NoIR 207s, Bolle100s, Phase 2
|
Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19547 |
| Status: |
Offline
|
|
Posted: Fri Jun 24th, 2005 20:48 |
|
The First & Constant Guide to Marshall Protocol is the phase one doc. Please check all precautions / instructions in the Phase One Doc.. some have it printed to check with regularly.
says:
"10. Increase the (every other day) minocycline, slowly, in small increments. The usual dosage increment is 25mg per week. Allow a week or more between increased doses to make sure your Herxheimer reaction is not more than you wish to tolerate. Different bacteria and tissues can be targeted by different levels of antibiotics, so there is a good reason to stay at each dose until the Herxheimer is minimal. You may take a 'break' from the antibiotics for a few days, or even a few weeks, if you need to feel better for a while. Continue to take the Benicar, however.
Do not try to 'speed up' therapy by using a higher dose of minocycline than the minimum needed to give you Herxheimer. These are very slow growing bacteria and there is no need to hurry. The dose of antibiotic that you can tolerate may change (both up and down) during the course of therapy." <<<
Barb ...
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
|
R.Bartley
Member in Phase 3
|
Posted: Sun Jul 3rd, 2005 21:32 |
|
Increased minocycline dose to 50mg 7/2/05. I'm taking my mincycline at 6 am. I usually experience numbness in my face and feet later that morning, and some Herxing that night. The 2nd day is usually symptom free, or with only an occasional Herx.
I had to fly this week, for the first time since beginning the protocol. I was amazed at how bright airports and passenger jets are. I did my best to avoid direct exposure. No sun flares, but I believe the light Herxing all but went away for a few days. All is well!
____________________
Sarcoidosis/lymphnodes joint-pain edema 125D53 Ph1Mar07 Ph2Aug05 Ph3Jan06 NoIRs/Julbo covered up low lux home light exp r/t work 25D11(Mar08)
|
R.Bartley
Member in Phase 3
|
Posted: Sat Jul 9th, 2005 04:23 |
|
| I increased minocycline dose to 75mg on 7/8/05. Slight herxing, expecially the nights after taking the minocycline that morning. I'm experiencing some ocassional lightheadedness and numbness, but still steady as she goes I've started having an odd reoccurring dream. Overall, I'm still feeling much, much better than before starting the MP.
____________________
Sarcoidosis/lymphnodes joint-pain edema 125D53 Ph1Mar07 Ph2Aug05 Ph3Jan06 NoIRs/Julbo covered up low lux home light exp r/t work 25D11(Mar08)
|
R.Bartley
Member in Phase 3
|
Posted: Sun Jul 10th, 2005 14:13 |
|
I made a conscious decision to 'schedule' my increases of 25mg in abx dosage on Fridays, so that I would have the weekend to adjust if necessary. Yesterday (Sat. 7/9) it proved to be a good decision. I wouldn't say the herxing was intolerable, but it necessitated resting all day. Not something I could effectively do on a normal 'work day'. I also attribute the intensity of the herxing to the excessive sunlight exposure I received traveling to and from the airport and in and out of the hotel and meeting facilities on a business trip on Wednesday and Thursday. This experience has been a real eye opener. It has emphasised to me how important awareness and adherence and to all facets of the MP are.
It also prompted me to re-read important topics, like Why is my 'herx' more intense after exposure to Light &/or Vitamin D ? , Why do we take minocycline only every other day? Why do I feel worse on the second day? , and My Herxheimer reaction is too strong. What should I do?
I've decided this experience was normal and to be expected, given all the factors. So, I'm not changing anything for the moment, although flying at night is starting to sound pretty good!
Last edited on Sun Jul 10th, 2005 15:01 by R.Bartley
____________________
Sarcoidosis/lymphnodes joint-pain edema 125D53 Ph1Mar07 Ph2Aug05 Ph3Jan06 NoIRs/Julbo covered up low lux home light exp r/t work 25D11(Mar08)
|
R.Bartley
Member in Phase 3
|
Posted: Tue Jul 12th, 2005 23:48 |
|
Received lab tests today, drawn 6/22/05 D.25=28, D1,25=53 at that time I was taking Benicar 40mg every 8 hrs. Vit. D avoidant diet for 6 mos. and wearing NoIRs for 1 mo.
Since increasing mino. to 75mg every 48 hrs, I seem to be herxing constantly. Mostly brain-fog, neck pain, fatigue. It's tolerable, just unpleasant.
Today I requested that my Dr. write my new Benicar perscription to be increased to 40mg every 6 hrs.
____________________
Sarcoidosis/lymphnodes joint-pain edema 125D53 Ph1Mar07 Ph2Aug05 Ph3Jan06 NoIRs/Julbo covered up low lux home light exp r/t work 25D11(Mar08)
|
R.Bartley
Member in Phase 3
|
Posted: Thu Jul 14th, 2005 15:39 |
|
I seem to feel my worse beginning an hour after taking the Mino. 75mg. On my abx days, I take the Mino. at 6am with the Benicar. By 7am the numbing, light-headedness, and brain fog is very evident and I've observed, continues throughout the day. I feel pretty good on the Benicar only days.
My next abx day is Sat. 7/16, and I'm going to switch to taking the mino. 75mg dose at 10pm with my last benicar dose to try sleeping through the unpleasant effects.
Last edited on Thu Jul 14th, 2005 17:39 by R.Bartley
____________________
Sarcoidosis/lymphnodes joint-pain edema 125D53 Ph1Mar07 Ph2Aug05 Ph3Jan06 NoIRs/Julbo covered up low lux home light exp r/t work 25D11(Mar08)
|
R.Bartley
Member in Phase 3
|
Posted: Wed Jul 20th, 2005 15:53 |
|
Merk Medco has declined to refill my perscription of Benicar @ 40mg x 6hrs. They called my Drs. office and declined the faxed perscription, stating that it exceeded the manufacturers maximum dosage. My Drs. office called me and said it was up to me to escalate to Medco. I did so, but they only offered that my Dr. should call the Physician Service Center at 800-987-5254.
I've been getting by up until now, because of the 90 day perscription I had at a much lower dose of 40 mg per day. Because my previous Dr. closed her practice last month due to illness, I've been working with a new Dr. who is very new to the MP. I'm concerned that he may not be confident enough to force the issue with the pharmacy.
Any assistance would be appreciated.
____________________
Sarcoidosis/lymphnodes joint-pain edema 125D53 Ph1Mar07 Ph2Aug05 Ph3Jan06 NoIRs/Julbo covered up low lux home light exp r/t work 25D11(Mar08)
|
R.Bartley
Member in Phase 3
|
Posted: Wed Jul 20th, 2005 17:19 |
|
I received a follow up call from a pharmacist at Medco. He stated that 2 months ago Medco's clinical board met and determined that as a corporation they would not dispense any perscriptions of benicar for anything other than the treatment of hypertension, and only for manufacturer recommended doses.
My Dr. has offered to provide another perscription for me which I plan to have filled locally. It's at least nice to have the option of having access to the drug and paying all out of pocket.
I'm escalating through my companies human resources department as well, since they are in reality self-insured with Medco administering the corporate plan.
____________________
Sarcoidosis/lymphnodes joint-pain edema 125D53 Ph1Mar07 Ph2Aug05 Ph3Jan06 NoIRs/Julbo covered up low lux home light exp r/t work 25D11(Mar08)
|
Robertrr
Member in Phase 3
| Joined: | Thu Jul 14th, 2005 |
| Location: | Austin, Texas USA |
| Posts: | 384 |
| Status: |
Offline
|
|
Posted: Thu Jul 21st, 2005 04:47 |
|
Rick,
I received a call today from Medco telling me the same thing. I'm escalating through their "mgmt" but I see now that their is little chance of getting it approved. I'll have to try my companies HR to see if I can get it paid. In the worse case, I guess I'll be paying out of pocket. Good Luck!
Robert
____________________
Sarcoidosis 125D44 25D28 Ph1Jul05 Ph2Sep05 Ph3May06 D25-8(Feb07) May08 NoIRs outside otherwise normal light exposure
|
Foundation Staff
.
| Joined: | Sat Jul 10th, 2004 |
| Location: | |
| Posts: | 17283 |
| Status: |
Offline
|
|
Posted: Thu Jul 21st, 2005 14:47 |
|
R. Bartley,
Since your company is self-insured, you may have some recourse if they have their own formulary of meds they will pay for. Medco's action to decide what a drug should be used for is inappropriate, IMO. The dosage and reason for use falls within your doctor's license to practice medicine. He shouldn't be afraid to go to bat for you regarding this issue. At the very least, he should be able to justify 80mg per day since the FDA is on record as saying this is a safe dosage.
Good luck,
Meg
|
R.Bartley
Member in Phase 3
|
Posted: Sat Jul 23rd, 2005 03:14 |
|
I combined the recommended escalation letter with my own testimony and forwarded it to my company's plan administrator. If nothing else, a few more people may become aware of the efficacy of the MP...dollar for dollar, the MP is a bargain! What I spend on on the RX's and blood tests on the MP is a pittance compared to all the bizarre medical tests, cat scans, and pain masking drugs I've received in the past. I think of the thousands of people worldwide who aren't able to realize their full potential, due to their TH1 disease. The corporate health plan administrators alone, should be beating a path to Dr. Marshall's doorstep, asking how best to make it a part of their corporate benefit plans...I can see it now, listed right above Weight Watchers!
_________________________________________________
To my plan administrator: A Medco pharmacist called me to explain why the refill of my prescription for Benicar, an Angiotensin II Receptor Blocker, was denied. I understand that Medco's very conservative denial is due their assessment of 'safety concerns' and use 'not to manufacturers specifications', and is to protect them from any legal ramifications, and perhaps plan costs. I don't disagree with their prerogative to make a business decision. I believe Medco's corporate decision to deny all future requests for prescriptions of Benicar was recently (2 months ago) prompted by the growing use of the Marshall Protocol in the treatment of TH1 Inflammatory Diseases. The Marshall Protocol is relatively new and is used in the successful treatment of TH1 Inflammatory diseases such as sarcoidosis. The protocol has been reviewed by the NIH and has been documented in various medical journals. Even though it is based on good demonstrable science, it is still not widely understood by the medical community, primarily because relatively few people have sarcoidosis. I will offer to proactively and voluntarily provide Medco with a release letter for my prescribed use of Benicar under the Marshall Protocol.
Since I now know what Medco's corporate position and answer is for the denial of my prescription refill, I'll give you some personal background information regarding the reason for the prescribed use of the drug Benicar in the treatment of my disease, and why I believe I have no choice but to continue to use this drug, even if it is 100% at my cost and procured through a local pharmacist.
After suffering from a variety of undiagnosed chronic inflammatory symptoms, chronic fatigue, and depression for years, I was formally diagnosed with sarcoidosis in May 2003 through the biopsy of an enlarged lymphnode in my chest. The long term prognosis for sarcoidosis patients is grim, and my overall health and well being continued to decline. Historically, only the chronic symptoms of sarcoidosis are treated to provide some relief to the patient. I sought out these treatments through my pulmonologist and family physician, but realized after being scheduled for one more unnecessary CT, and the offer of narcotic pain relievers (both of which I declined), that I was going to have to take control of my health care if I was going to survive this ordeal.
In December 2004, while researching additional treatment options for sarcoidosis, my wife happened upon information regarding the Marshall Protocol. We researched the details and case histories of this protocol for a month, and in January 2005 I made the recommended life-style changes for diet and elimination of sun exposure. Within 2 months, I experienced symptomatic relief of some of my chronic pain. I then sought out a local physician for consultation, who had been treating other sarcoidosis patients with the Marshall Protocol with excellent results. Under my physician's care, I could then begin following the full protocol required for the cure.
Sarcoidosis patients have a dysregulated Vitamin D metabolism which causes abnormally high levels of the active metabolite 1,25-dihydroxyvitamin-D. This results in chronic inflammation and prevents the immune system from killing the cell-dwelling pathogens that trigger the abnormal immune response.
By blocking the angiotensin receptor sites, Benicar reduces the level of 1,25-D dramatically and provides an inflammatory blockade which allows the immune system to function normally. This greatly potentiates the use of antibiotics that treat the underlying cause of the disease.
Studies have shown that sarcoidosis patients have additional Angiotensin II receptors in their inflammatory granuloma and they all need to be blocked to provide an adequate anti-inflammatory effect.
This inflammatory blockade only works if an adequate blood level of Benicar is maintained by dosing every six to eight hours. Therefore, the Benicar dosage has to be individualized (in full accordance with the labeling) in order for the drug to be fully effective.
FDA guidelines allow this dosing and this medication does not work effectively for this purpose at a lower dosage, due to the sarcoid inflammation.
Even during the sometimes difficult healing process, my wife continues to remind me that she hasn't seen me this well in years, and she is correct. I've never been the type of employee to take a 'sick day' when I could be at work, even if less productive. I now know and feel like I will be an effective and high-performing employee for as long as I choose to be. I am nearing the completion of Phase 1 of the Marshal Protocol, and will be advancing on to Phase 2, with the introduction of additional antibiotics. Benicar is a critical pharmaceutical component of the Marshal Protocol, and unfortunately there are no formulary substitutes. Until there are, I will need to continue to purchase Benicar until my disease is cured, once and for all.
____________________
Sarcoidosis/lymphnodes joint-pain edema 125D53 Ph1Mar07 Ph2Aug05 Ph3Jan06 NoIRs/Julbo covered up low lux home light exp r/t work 25D11(Mar08)
|
R.Bartley
Member in Phase 3
|
Posted: Tue Jul 26th, 2005 20:48 |
|
| Increased minocycline to 100mg on 07/26. Primarily herxing within the following 24 hours. I decided to stick with taking the abx at 6am with my Benicar. Non-abx days seem to have relatively fewer herxes than abx days. Most herxes are in the chest or neck area this week, with the usual foggy feeling. If all continues well, I plan to submit the Phase 2 questionnaire this weekend.
____________________
Sarcoidosis/lymphnodes joint-pain edema 125D53 Ph1Mar07 Ph2Aug05 Ph3Jan06 NoIRs/Julbo covered up low lux home light exp r/t work 25D11(Mar08)
|
R.Bartley
Member in Phase 3
|
Posted: Sat Jul 30th, 2005 18:12 |
|
| This was a difficult but experience building week. On Tuesday I experienced the most intense herxs yet. My 2nd time to take the 100mg dose, by the end of the day the chest pain and pressure was very uncomfortable along with dizziness. On Wed., the non-abx day, I began feeling better. On Thursday I waited an additional 12 hours until the evening to take the next abx dose, but was only able to sleep about 4 hours. Friday I was very tired, improved throughout the day, but still wasn't able to get my usual full night of sleep. Finally the weekend! Plan to see a movie and take naps.
____________________
Sarcoidosis/lymphnodes joint-pain edema 125D53 Ph1Mar07 Ph2Aug05 Ph3Jan06 NoIRs/Julbo covered up low lux home light exp r/t work 25D11(Mar08)
|
Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19547 |
| Status: |
Offline
|
|
Posted: Sat Jul 30th, 2005 19:18 |
|
Rick
if you would like to be making preparations re Phase 2 see the FAQ and the links within it Where can I find phase two and three?
Barb ...
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
|
R.Bartley
Member in Phase 3
|
Posted: Sun Jul 31st, 2005 14:53 |
|
The insomnia I'm now experiencing is becoming intolerable. The 'wired' feeling is approaching a state of panic.  I'm also experiencing a change in my tinnitus. The pitch is the same, but it seems louder or more intense. Based on the following- Which sleep med, anti-anxiety med, pain med or muscle relaxant can I take? I'm going in search of Quercetin today with the hopes of finding some relief. I'll see my Dr. for further assistance this week, if the Quercetin isn't of help.
____________________
Sarcoidosis/lymphnodes joint-pain edema 125D53 Ph1Mar07 Ph2Aug05 Ph3Jan06 NoIRs/Julbo covered up low lux home light exp r/t work 25D11(Mar08)
|
Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19547 |
| Status: |
Offline
|
|
Posted: Sun Jul 31st, 2005 19:23 |
|
Rick
see the FAQ My Herxheimer reaction is too strong. What should I do? for more options.. slowing the herx may also be helpful..
Barb ...
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
|
R.Bartley
Member in Phase 3
|
Posted: Mon Aug 1st, 2005 17:07 |
|
This was a huge help. One additional dose of 50mg of Minocycline and 3 400mg doses of Quercetin spaced throughout the day eliminated the symptoms by evening and enabled me to sleep. I hadn't previously grasped the full concept of increasing the frequency of abx at a reduced dose to manage the severity of the herxing.
I plan to shelve the Quercetin for now, and focus on the abx and ABR doses to manage the herx symptoms. I'll add a few Minocycline capsules to my daily kit that I carry with me, just in case it's needed during the day while I'm working and herx's are escalating beyond what is manageable.
Thanks again Barb, for throwing the buoy!
____________________
Sarcoidosis/lymphnodes joint-pain edema 125D53 Ph1Mar07 Ph2Aug05 Ph3Jan06 NoIRs/Julbo covered up low lux home light exp r/t work 25D11(Mar08)
|
R.Bartley
Member in Phase 3
|
Posted: Sat Dec 17th, 2005 15:52 |
|
Update on Medco reinstatement of coverage of Benicar-
I was recently reinstated for coverage of Benicar through the mail-in plan. Here's what I learned.
1) Do not send Medco a prescription for Benicar that exceeds 40mg q8h. I made the mistake of sending in a prescription for 40mg q6h.
2) Do not tell Medco or your insurance plan administrator that you are following the MP. This is between your Physician and you.
3) If you need additional doses of Benicar to help get intolerable herx symptoms under control (along with the MP recommended abx adjustments) obtain some Benicar samples from your Physician. On difficult days, I peronally found that taking the Benicar in 20mg doses with increased frequency (which was only one or two extra 20mg doses for the day) with the recommend change in the abx dosage got the herx symptoms back under control.
4) Benicar in 40mg pills is almost half as expensive as 20mg pills. Buy a good pill cutter now, as you'll need it in Phase 2 & 3 anyway.
This is why I believe I was reinstated for Medco coverage-
I requested that my physician reduce my prescription back to 40mg q8h. I continued to have the prescriptions filled at my local Walmart pharmacy. The dear pharmacist called Medco and behind the scenes with his creative submission of the prescription, had obtained at least partial insurance coverage. I signed a waiver for Walmart at their request, since I was exceeding the recommended manufacturer's dose. Finally, Medco's policy regarding the limitation of receiving up to 3 local pharmacy prescription refills kicked-in, and I received a form-letter notice that my next prescription would have to be mailed in for complete insurance coverage.
I called Medco customer service, and indeed found that the restrictions in my profile had been removed. I've now received my first mail-in prescription since making the errors earlier this year.
Wishing all of you a speedy return to wellness. Rick
____________________
Sarcoidosis/lymphnodes joint-pain edema 125D53 Ph1Mar07 Ph2Aug05 Ph3Jan06 NoIRs/Julbo covered up low lux home light exp r/t work 25D11(Mar08)
|
Current time is 09:48 | |
|
