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Chris
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| Joined: | Wed Oct 24th, 2007 |
| Location: | New Jersey USA |
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Posted: Sun Oct 25th, 2009 16:59 |
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Cynthia is right, benicar is your friend. Do not skip it, as it does have protective effects.
Handling herx is fairly personal. In the early stages, more frequent abx can help, or less frequent. Depending on the situation, I found herx to moderate with a 12/3 day cycle instead of the 10/2.
Don't go under 25mg for mino. Is that what your 'started with less' meant?
Please review the phase1 doc http://www.marshallprotocol.com/phase1.pdf
It has notes on why we don't use tiny doses, as well as notes on the more serious herx like cardiac troubles.
Right now, I find that taking a heftier dose at night helps me sleep better and wake up better. I'd really like to find a time-release form of benicar to make it more likely to get 8-hours straight, but shifting the dose works. It's something to talk to your doc about.
I can suggest a cup of strong coffee in the morning to remind the immune system it's time to shut down so the day can proceed. Quercetin helps for some folks.
--Chris
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sarcoid since 1983 (or much earlier), MP since summer 2004 Chris' story
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warrior
Member
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Posted: Mon Oct 26th, 2009 00:01 |
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Hi Cynthia,
Thank you very much for your kind help by providing the quick valuable information and come to my rescue. It is puzzling to realize that Benicar and Mino play an interchangeable role of increasing / decreasing IP, depending on the immune response and body’s inflammation level. It is a bit tricky to interpret, what medication to change when symptoms flare -up. It is difficult to sustain the IP over a long period and avoiding sun is my biggest challenge so far, any comments?. Restarting the abx. helped me over the past two days and follow-the new guidelines carefully.Now I am vry confident of taking the additional dose of Benicar before going to bed.
In particular, I am plagued by severe sinus inflammation, resulting in nasal congestion excess mucose from Mino that I believe and Sun exposure makes it worst. Currently, I am in ph-2, can I substitute Mino by other abx , for the time being or keep trying out different dosage of Mino or modulating the time intervals and also increasing the Benicar as needed.
I am not able to get pass, Phase-2 hump ( 25mg MIno and 31.25mg Azithro) and I could use more information on this hurdle and at the same time, not in a hurry to speed-up and fyi, I was able to take 100mg Mino with out much symptoms over 5 months but now it is a difficult to manage my work assignments due to mental fog.
Thanks.
Warrior
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Sarc/Pulm,liver,spln,fatige,Meds-Prednisone-4mg, Vit-C,125D79,VIT-D19,Auyur-8-07. Noirs since 02-13-08- Ph1Dec15-08 Ph2July09 Noirs Covered up no low lux home light exp r/t work & 25D8 (Aug09)
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warrior
Member
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Posted: Mon Oct 26th, 2009 00:24 |
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Hi Chris,
Thank you. You guys are great with timely and experienced guidance, last Friday was a bit scary for me as I kept forgetting people's names and interpreting the appointments wrongly due mental fog. It did help me to restart the abx after 5-6days and this time I did not have much sinus inflammation but it is a difficult time in my life, between avoiding Sun and attending to daily commute and exposing to sun light at work and I am getting more careful and thoughtful day by day. Your help in providing MP me the valuable links make a big difference for patients like me, can you imagine managing ourselves with out your moderating resources. I will be more regular in my progress reporting.
What I meant by started with less dosage of Mino means, instead of 50mg that I was on, a week ago now I restarted my Mino dosage with 25mg and try to build it up slowly in 4 day cycle times instead of alternate day schedule.
Thanks
Warrior
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Sarc/Pulm,liver,spln,fatige,Meds-Prednisone-4mg, Vit-C,125D79,VIT-D19,Auyur-8-07. Noirs since 02-13-08- Ph1Dec15-08 Ph2July09 Noirs Covered up no low lux home light exp r/t work & 25D8 (Aug09)
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IngeD
Moderator
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Posted: Mon Oct 26th, 2009 09:11 |
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Hi Warrior. You may have read this link:
How to manage Immunopathloy
For some people IP increases when the cycle for mino is lengthened. Or when mino is reduced. All a matter of experimenting and seeing what works best for you.
Kind Regards, IngeD
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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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Chris
Moderator
| Joined: | Wed Oct 24th, 2007 |
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Posted: Tue Oct 27th, 2009 19:46 |
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Warrior,
I've been thinking about the mental fog. A primary cause of fog for me was too much light, which has been mentioned here a lot.
Another situation where I encountered fog was every morning on rising. At one point I noticed it was correlated with low body temp (<97). At that point, until I got the body back up close to 98.6, I was not up to driving. Hot coffee & a hot shower would do it. Later, I found out that simply being sure to have enough blankets on to prevent me from getting too cold during the night would help prevent or reduce the morning fog. It takes getting used to, as it feels way too warm when you first crawl under the blankets. This suggestion is probably getting close to the old-wives-tale sort of thing we try not to do here, but it might help. It's certainly a trade-off, as being warmer can also increase herx during the night.
Other than that, I'm probably a lousy reference for handling mental fog. I had to take a couple of months of disability in phase 3 when things just got hard.
Chris
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sarcoid since 1983 (or much earlier), MP since summer 2004 Chris' story
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warrior
Member
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Posted: Wed Oct 28th, 2009 04:22 |
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Hi IngeD,
Thank you very much, the inforamation is valuable. It is again tricky to figure out increasing/decreasing the duration of time between Mino doses.
Thanks
Warrior
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Sarc/Pulm,liver,spln,fatige,Meds-Prednisone-4mg, Vit-C,125D79,VIT-D19,Auyur-8-07. Noirs since 02-13-08- Ph1Dec15-08 Ph2July09 Noirs Covered up no low lux home light exp r/t work & 25D8 (Aug09)
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warrior
Member
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Posted: Wed Oct 28th, 2009 21:06 |
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Hi Chris,
Thank you for sharing your experiences, it is very much possible that I too felt my IP response was much severe on Monday nigh when I increased the room heat setting at 71” F and yesterday I brought it back to 70”
My progress this week started out well but ended up badly.
Last Friday night I restarted, Mino –25mg + Azithro 0.33mg and the Benicar being 40mg x 4 times and I got better on Saturday & Sunday but exposed to 2 hour driving and on Monday morning was also good but a long day and before going to bed, I did take my 4th dose of Benicar but woke up with cold and sore throat symptoms at about 4:300 am and also feverish, I thought I got infection, but it was IP, I took 40mg Benicar cut in to pieces and took it sublingually. It worked and the symptoms came down slept again. On Tuesday, I tried reducing the Mino interval and took 50mG and the symptoms were not bad and evening in 12 hour duration took an another dose of 50mg. Mino which made me so week and started to sneeze and made me congested nose and heavy breathing. This morning I started my day early by taking 40mg, Benicar at 6:00 AM and I climbed up stairs couple of times and by 10:30 I was feeling very dizzy and tired and to find that my BP came down to 84/40. I had stay back at home, could not go to work after drinking water and lying down, the BP came back up to 116/70 or so. I took my 2nd dose of Benicar and not going to take Mino again tonight.
I am still not sure how it plays every day and what kind of approach to take, inrease Mino or cut down mino, especially when things are unpredictable.
Thanks
Warrior
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Sarc/Pulm,liver,spln,fatige,Meds-Prednisone-4mg, Vit-C,125D79,VIT-D19,Auyur-8-07. Noirs since 02-13-08- Ph1Dec15-08 Ph2July09 Noirs Covered up no low lux home light exp r/t work & 25D8 (Aug09)
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jcwat101
Research Staff
| Joined: | Wed Oct 17th, 2007 |
| Location: | California USA |
| Posts: | 174 |
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Posted: Fri Oct 30th, 2009 01:54 |
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It does take some time and experience to figure out how best to manage. You might review this link:
http://mpkb.org/doku.php/home:mp:managing_immunopathology
Joyce Waterhouse
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20 years with CFS/FM/Lyme/IBS, mostly recovered from MCS and food sensitivities after 4 years on MP, http://SynergyHN.com
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warrior
Member
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Posted: Fri Oct 30th, 2009 03:35 |
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Thank you Joyce.
By the time I tried, increasing the frequency of Mino to 12 hour duration Monday night/Tuesday morning & Tuesday night resulted in fatigue, I could not tolerate the immune reaction and it made me sick and on Wednesday morning, I took earlier intake of Benicar in 6hr schedule to counter IP resulted in low B.P and also anxiety for the 1st time.
I am afraid that I am not heading in the right direction. From yesterday afternoon, developed low blood pressure 84/49, started feeling dizzy and laid down and drank lots of water and later recovered. Yesterday, stayed home, I took the Benicar at 6 AM verses usual time of 8 am and slept from 6pm to 10:30 pm, felt much better. But today I developed anxiety at work, since morning and felt dizzy. Unfortunately it is also due to pressure on me to be at work though I am not feeling well and I am not able to think clearly which is causing a lot of anxiety.
If I lower the Benicar dose, due to low BP (two days in a row) how will I blockade the inflammation? While by increasing the Mino frequency to 12 hours did not help me, it made me tired and more IP. (Sneezing and nasal discharge) I am anxious and afraid about the future of recovery thinking how can I work this way. I have been taking allergy Sinus Tylenol both at night and in the morning has it got any thing to do with the low BP. Also since, morning, I had two loose bowl moments and two in the evening and stomach disturbance through the day. (One hour drive to work applied sun screen lotion on the face, wore 2% Noir.
Thanks
Warrior
Last edited on Fri Oct 30th, 2009 03:58 by warrior
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Sarc/Pulm,liver,spln,fatige,Meds-Prednisone-4mg, Vit-C,125D79,VIT-D19,Auyur-8-07. Noirs since 02-13-08- Ph1Dec15-08 Ph2July09 Noirs Covered up no low lux home light exp r/t work & 25D8 (Aug09)
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IngeD
Moderator
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Posted: Fri Oct 30th, 2009 10:48 |
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Hi Warrior. Suggest you study up this information re low blood pressur and Benicar.
Here is some more information on Minocycline that may give you other ideas re varying the amount / frequency etc. It is all part of a learning curve right now to find what works best for you as far as keeping IP tolerable.
Try all the different techniques and don't give up. You will find something that works for you.
Do not be afraid to go to 4 hourly Benicar to keep the IP tolerable. Following are some links on dizzyness:
Why am I dizzy and or fainting?
Does Benicar cause dizzyness?
Hope this helps you. Hang in there. IngeD
P.S. re the anxiety. That too is IP which can also be the result of too much light. For me it is always associated with too much light exposure. To combat the anxiety I take a small dose of Valium (try 1 mg first). In fact you may need to review how much light exposure you are getting because that can have quite a big impact on IP.
Last edited on Fri Oct 30th, 2009 11:03 by IngeD
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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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Deedee
Member
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Posted: Sat Oct 31st, 2009 16:41 |
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It is only human nature to try to assign a reason to something we don't understand.
When I first started Benicar, I experienced dizzyness, even when laying down. At first I thought it was the Benicar. However, after taking my BP during times of being dizzy and times when I was not dizzy, I soon learned that there was no relationship to the BP and feeling dizzy.
I no longer take my BP. When they take it at the doctor's office it is usually around 100/80 now. During the first few months of the MP, it was a lot lower. My body adjusted.
Recently my husband increased his Zith and 3 days later was very dizzy. It lasted one day. Was it the Zith? Who knows. He didn't even bother to take his BP. We knew it was IP. The following day he was fine.
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Sarcoidosis lymphopathy (July 08) | 125D53 25D54 Jul08 | Ph1Aug08 Ph2Nov08 Ph1Mar09 ModPh2Aug09 Ph1Sep09 ModPh2Oct09 Ph1Dec09 | 25D24 (Nov08) 25D25 (Feb09) 25D15 (May09) 25D14 (Dec09)
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warrior
Member
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Posted: Wed Nov 4th, 2009 04:57 |
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Thank you Deedee,
I noticed that when I stand or walk a lot without rest then my BP is coming down and feel dizzy otherwise it is manageable. I have a question, when I take my noir glasses out for couple of minutes while driving, my mucus color changes to green or yellow when I cough is it any thing to do with infection, why is it happening?. In other words, by exposing to sunlight 1) my sinus discharge /nasal changes in color to green /yellow.
Thanks
Warrior
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Sarc/Pulm,liver,spln,fatige,Meds-Prednisone-4mg, Vit-C,125D79,VIT-D19,Auyur-8-07. Noirs since 02-13-08- Ph1Dec15-08 Ph2July09 Noirs Covered up no low lux home light exp r/t work & 25D8 (Aug09)
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Joyful
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Posted: Thu Nov 5th, 2009 07:39 |
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Hi Warrior. 
You might want to browse the articles linked on this page:
http://mpkb.org/doku.php/tag:light?do=showtag&tag=light
Also, I have an increase in IP from sunlight if it gets directly in my eyes.
There is an explanation of why that happens somewhere...
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MP Stories | Bacteriality | MP Search | MP Knowledge Base
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warrior
Member
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Posted: Fri Nov 6th, 2009 05:16 |
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Thank you Joyful. The information about the light is matching my symptoms and very helpful.
Warrior
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Sarc/Pulm,liver,spln,fatige,Meds-Prednisone-4mg, Vit-C,125D79,VIT-D19,Auyur-8-07. Noirs since 02-13-08- Ph1Dec15-08 Ph2July09 Noirs Covered up no low lux home light exp r/t work & 25D8 (Aug09)
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warrior
Member
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Posted: Thu Nov 19th, 2009 03:13 |
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Hi Chris
I took my last dose of abx, Azithtro on 11-4-09 and stopped Mino a week before but the IP continued over the weekend and I am taking Benicar 4 X day. The biggest challenge is sinus inflammation and flu like symptoms. I went back to work on 11-10- 09. Every day either 4 or I wakes up at 1:30 AM AM and find myself with allergy like symptoms, which are consistent with IP. To over come this I am taking Mucinex or Tylenol sinus allergy at bedtime and morning, sparingly results in thick mucous, itchy throat and blocked airways. This week also it is continue to be that way. It is extremely tiring to pull my self out of bed and I am forcing myself to be at work in spite of body aches and feverish, to be regular at work but it is not at all easy. due to fatigue and lack of energy. In order to over come the IP, and anxious to not miss my work, by taking my 1st dose of Benicar- 40mg at 6 :00 AM, after taking shower at 7:30 am. I am feeling dizzy due to low BP @ 87/ 57 so I decided not to take the early morning dose of Benicar.
I am slowly getting over the mental fog. Today is the 1st day, I felt myself energetic and less tired un till noon at that point, I had to sit in a meeting from 2:30 Pm till 6:30 PM and though I was facing away from the window which Is closed with shades with tiny perforated pin holes all over the surface area, (roll down shade) through which the Sun light passes and made me sick slowly, at about 4:00PM. I developed slight cough and running nose resulted in thick mucous changed in color to light green. Later, I covered half the window with black board and the top part role down with perforated window shade and why do you think the mucous secretions changes in color whenever I expose my self to sunlight, or is it due to inflammation of sinuses or due to what? I have real challenge with sun light exposure on a daily basis.
I read that even after taking a break from abx, the IP continues for a month or so. What is she difference between Herx and IP, is it the same. I believe that my immune system is very active and creating the Herx which I am good one way but not able to cope with light problems, how do the MP members work with out being exposed to Sun light?.
Thank you
Warrior.
Last edited on Thu Nov 19th, 2009 03:19 by warrior
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Sarc/Pulm,liver,spln,fatige,Meds-Prednisone-4mg, Vit-C,125D79,VIT-D19,Auyur-8-07. Noirs since 02-13-08- Ph1Dec15-08 Ph2July09 Noirs Covered up no low lux home light exp r/t work & 25D8 (Aug09)
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Chris
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Posted: Thu Nov 19th, 2009 18:41 |
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What is she difference between Herx and IP, is it the same.
Yes. Jarisch-Herxheimer reaction or herx is the same as IP or immunopathology.
how do the MP members work with out being exposed to Sun light?.
Depends on the job and person. It isn't easy or possible for all jobs. Some can take disability for a time, others shift to jobs with lower light. We use zinc oxide cream at ALL times. Many put up with looking a bit silly - wearing dark glasses indoors, and even hats for us bald guys. And you get serious about wearing jackets, gloves and full face masks while driving to work, even in warm weather. If you are a life guard at the California shore, it might be time for a brief career change.
Chris
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sarcoid since 1983 (or much earlier), MP since summer 2004 Chris' story
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warrior
Member
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Posted: Fri Nov 20th, 2009 03:34 |
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Thank you Chris. It is very difficult to avoid natural at work as every room and conference room has windows or glass doors at work making me sick. I tried the sunscreen lotion with Copper base but am not fully helping fully. I can tolerate any amount of physical pain but mental fog makes me handicapped and worried about.
Short term disability is one of my options if I can not go any further but I loose my participation and role at work and I don't know how to determine the time off as it will come back after being exposed sun on return to work. Are the symptoms go away after few months in to phase 2 or persists for 6 months?
I am sure it is stated in the phase 2 documents and i shall re-read. Are there any records showing how many people had ended- up taking short-term disability over the course of their MP so that I can use the statistics in my case.
Thanks
Warrior.
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Sarc/Pulm,liver,spln,fatige,Meds-Prednisone-4mg, Vit-C,125D79,VIT-D19,Auyur-8-07. Noirs since 02-13-08- Ph1Dec15-08 Ph2July09 Noirs Covered up no low lux home light exp r/t work & 25D8 (Aug09)
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Chris
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Posted: Fri Nov 20th, 2009 19:32 |
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"Copper base" ? Do you mean zinc-oxide base here?
Light sensitivity varies from person to person. I'm still a bit sensitive after 5+ years, but it's way down from where it used to be.
Chris
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sarcoid since 1983 (or much earlier), MP since summer 2004 Chris' story
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jcwat101
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Posted: Sat Nov 21st, 2009 22:06 |
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You might review the sunscreen overview.
http://tinyurl.com/ca76l6
I don't think skipping a dose of Benicar will help your blood pressure. The blood pressure lowering at 40 mg daily is the same as at 120 and 240 mg per day.
In fact, it might make your symptoms worse to skip it.
I don't know if your workplace might make any acommodations for you. The sunscreen is not really effective if one is getting sun all day (including through a window). I find the 25% sunscreen works for 2 or 3 hours, but since it only blocks a certain % of the light, some gets through over longer time periods. And then the light to your eyes is a separate issue.
Some people find that minocycline actually decreases their symptoms and that taking it frequently at a lower level is helpful. I don't know if you noticed when you were taking it if you felt better during the first day after taking it or worse. If you felt better on the day you took it, then you might try taking 25 mg daily. If you felt better by the second or third day, then you are better without it.
Joyce Waterhouse
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20 years with CFS/FM/Lyme/IBS, mostly recovered from MCS and food sensitivities after 4 years on MP, http://SynergyHN.com
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warrior
Member
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Posted: Sun Nov 22nd, 2009 21:57 |
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Hi Chris,
Yes , I mean zinc and this is what happening to me these days , for example, two days ago, fyi, while I was talking to some one, I meant to say ostrich skin but I said Turkey and we laughed off.
Thanks
Adi
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Sarc/Pulm,liver,spln,fatige,Meds-Prednisone-4mg, Vit-C,125D79,VIT-D19,Auyur-8-07. Noirs since 02-13-08- Ph1Dec15-08 Ph2July09 Noirs Covered up no low lux home light exp r/t work & 25D8 (Aug09)
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