 |
| Author | Post |
|---|
Dr. Greg Blaney
Health Professional
|
Posted: Sun Jun 14th, 2009 22:30 |
|
Dear Barb:
As is now apparent, immune dysfunction is the likely basis for most chronic illness with persistent infection/inflammation the major consequence and the cause of the degenerative changes seen. Immunity is a reflection of identity and any mechanism that assist one in regaining one's identity can only help in recovery. Also, the consequences of these illnesses on one's psyche are significant and often require other interventions beside VDR activation and antimicrobial therapy.
I now regularly counsel patients with this mantra.
One must treat not only the cause but also the consequence.
Good luck and keep in touch.
____________________
59 year old male, started MP Dec 2004. Remaining symptoms are mild periodic tinnitus & dry skin. On Benicar 40 mg tid and azithromycin 125 mg q10d. Completed all phases including using Bactrim.
|
Ron
Member in Phase 2
|
Posted: Sun Jun 14th, 2009 22:55 |
|
Dr Trevor Marshall wrote: When people stop taking Benicar two things kick in - they lose organ protection, and they lose immune system activation. The first occurs within hours, the second over a period of weeks. Barb weaned Benicar very slowly, so as to minimize both problems.
Just wondering: would it make sense to use a different non-VDR-agonistic ARB like, for example, Valsartan and benefit from organ protection without immune system activation?
Good luck Barb!
Ron
____________________
Dad with RA, MP 01/08| 25D-16.8| Apr08 7.1 Sep08 11.6 Mar09 7.6 Jul09 17 Dec09 10.4| oxycodon, NoIRs, limited outings covered up
|
Dr Trevor Marshall
Foundation Staff
|
Posted: Sun Jun 14th, 2009 23:11 |
|
Ron, only Benicar (Olmesartan) will bring recovery.
Valsartan is a dead end. During 1999 to 2002 I used Valsartan for 4 years, and my health just got worse and worse. Others have tried it, and also failed to heal.
Valsartan may be useful while weaning Benicar, although it doesn't seem to be a panacea. Barb weaned Olmesartan slowly and carefully, which, IMO, is a preferable way to do it.
I have spent the last decade figuring out why Olmesartan is such a godsend. The science is solid and comprehensive, even if it is a little hard for non-scientists to understand.
Ron, it is so easy to guess at how drugs work, and whether they give organ protection or not. We have real data on Olmesartan, it is unique. Please do not give people false hope 
Trevor
Last edited on Sun Jun 14th, 2009 23:33 by Dr Trevor Marshall
|
LH1953
Member in Phase 3
|
Posted: Mon Jun 15th, 2009 01:39 |
|
Oh Barb, as you know I have always called you "MY ROCK" I personally could have never made it through the first 2 years on the MP without YOU!!!!!
It is the little things in life that mean so very much to us. The thrill of, as one would say, knowing to "stop and smell the roses". Well, I know we would rather be those healthy people who don't even know that the ROSE exists.
As we journey through life, it IS those little things that DO count the most. I feel like I WAS at the beach with your description. Have you ever considered writing a book? I bet you would be great at it.
Wishing you much health, and to be superwomen like me. Far from the norm, but not the extremely ill person we once were. YOUR road has been very long and hard. I hope it gets so much easier.
As I always say, when we are "in the box", it is harder to think "out of the box". May you be able to receive all the energy you have given to all of us, and your journey to wellness be as rewarding for you as so many of us have experienced!!!!!
Wellness to all, OX, Lori
____________________
Lyme, MCS, IC, asthma, reflux, UC, osteopenia, hypothy, EBV, 1,25D48, MP 8/05, Proventil inhaler, PBX, diazepam, fioricet, Ph3 7/06, NoIRs, limited outings covered up, low lux home, 25D4, 1,25D24
|
barbski
Member in Phase 3
| Joined: | Tue Jul 20th, 2004 |
| Location: | |
| Posts: | 487 |
| Status: |
Offline
|
|
Posted: Mon Jun 15th, 2009 20:55 |
|
Hi Barb,
Thanks so much for posting this, it's a huge relief to know that I'm not the only person who has observed worsening symptoms and test results on extra benicar. Like you it only ever made my symptoms and tests (particularly my low sodium) worse, and I have always been so disappointed to gain no relief from it.
I understand where you're coming from - like you, I'm taking a break from the MP. Over 3.5 years of constantly feeling rubbish was just too much for me. I've stopped the antibiotics and am slowly reducing the benicar. For me, just the reduction in dose from 40mg q6h to 40mg q8h has removed the worst of the low sodium issues.
All the best with your break - heck, if anyone DESERVES a break it's you.
Barbski Barb
____________________
CFS Lyme 125D50 Ph1Aug05 Ph2Apr06 brk Nov06-Jan07 ModPh2May07 Ph2May08 Nexium TR sodium zolpidem salbutamol magnesium citrate 25D (May05)
|
expate
Member in Phase 3
|
Posted: Mon Jun 15th, 2009 21:32 |
|
Hi Barb,
Wow, I didn't realize how behind I'd grown in reading here. How wonderful for you that you have found your way forward with your healing. Thank you for continuing to share your experiences and insights as I am certain it helps not only those of us following your progress but Dr. M and the research team as well.
*gazes off serenely imagining seafoam beads threading their way about your ankles guiding you to dance a little jig*
 dette
____________________
Hypervitaminosis D 1,25-D 52 pg/ml, 25-D 38 (4/08), 25-D 34 (8/08), 25-D 29 (10/08), 25-D 14 (3/09), 25-D 15: D3=15, D2<4 (6/09): all ng/ml, started Ph1 7/17/08, Ph2 11/4/08, Ph3 2/18/09. Covered up, but no facemask any longer. NoIRs. Home low light.
|
BARNEY
Moderator
|
Posted: Tue Jun 16th, 2009 00:14 |
|
barbski wrote: Hi Barb,
Thanks so much for posting this, it's a huge relief to know that I'm not the only person who has observed worsening symptoms and test results on extra benicar. Like you it only ever made my symptoms and tests (particularly my low sodium) This could have been taken care of by xtra salt, which is discussed on MP....clear back in 2005....some actually drank salt water. Sorry you did not succeed on MP. Hang in there, we will make it!!!BArney worse, and I have always been so disappointed to gain no relief from it.
I understand where you're coming from - like you, I'm taking a break from the MP. Over 3.5 years of constantly feeling rubbish was just too much for me. I've stopped the antibiotics and am slowly reducing the benicar. For me, just the reduction in dose from 40mg q6h to 40mg q8h has removed the worst of the low sodium issues.
All the best with your break - heck, if anyone DESERVES a break it's you.
Barbski Barb
____________________
64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar40/20mg&xtra
as needed,stage5,
|
jcwat101
Research Professional
| Joined: | Tue Jul 20th, 2004 |
| Location: | Pasadena, USA |
| Posts: | 1798 |
| Status: |
Offline
|
|
Posted: Tue Jun 16th, 2009 05:32 |
|
For people reading this who also have problems tolerating Benicar, I would mention that I had a period of time when I could not tolerate it either.
I made some changes to my diet that allowed me to tolerate it just fine and I discuss it in this article in case anyone wants to know about it:
http://synergyhn.com/cga
I can tolerate it fine now, but as has always been the case for me, I find higher doses increase symptoms rather than decrease them (the VDR activation overbalances the palliation).
Joyce Waterhouse
PS Glad you have found something that helps, Barb.
____________________
20 yrs with CFS/FM/Lyme/IBS, food sensitivities; 1,25D/25D 8/04:64/11 http://SynergyHN.com
|
kenc
Member in Phase 3
|
Posted: Tue Jun 16th, 2009 07:02 |
|
Barb,
It's amazing to me how long you have persisted on the protocol with such horrible IP while at the same time helping others through their struggles. When I think of the MP I think of you. You are an amazing coach. You've been there for all of us.
From a public relations point of view a coach like you would also be a great MP success story. That didn't happen, at least not yet. However, there are many of us who you have helped that will become great success stories, not because we've had it easy but because we were extremely sick and infected but endured with your help and made it. I might be one of them.
I sometimes refer to myself in jest as the crash test dummy of the MP. I've had total kidney failure, blood transfusions, temporarily lost my vision and ability to communicate, had an operation on my small intestine to remove a blockage and will likely have another operation to remove a stricture in my colon. However, I'm doing OK now. I walk 45 minutes every other day on a very hilly trail. I'm doing a lot of community work. Two years ago it was an enormous effort for me to just get off the couch and walk across the room! Last year I was slowly improving until about three months before the operation (in January this year). Now I'm feeling very optimistic.
I think it's wonderful now that the research focus is going to be on managing severe immunopathology. Now that you've helped us so much, I think it's our turn to help you by providing the clinical information needed to develop better ways of managing severe IP.
I wish you all the best.
KenLast edited on Tue Jun 16th, 2009 07:24 by kenc
____________________
Crohn's Disease 1984, 24May05 1,25D=33 25D=8.4, 6Sep05 1,25D=29 25D=12, 11Jun07 25D=<10.4 1,25D=10, 15Sep07 1,25D=14.2 25D=16, 12Jul05 Phase1 + pred, 12Jul06 Phase2 + pred/dexa, 14Aug07 Phase2, prednisone, dexamethasone, testosterone, aspirin, levothyr
|
medaesth
Member in Phase 2
|
Posted: Tue Jun 16th, 2009 08:18 |
|
My Dearest Barb,
I had not read your posting for quite awhile, what a surprise it was to hear all the things you are doing and how well you are getting along !
I was so surprised and happy to hear about your Beach trip. WOW !! Reading it, "I could
almost see you getting rid of shoes and hitting the water." That is so WONDERFUL !!!!
You certainly deserve many more wonderful trips to the Beach and other fun things. You have been such a trooper, gone through so very much, my heart literally cried out in joy for you and your healing !
You have always been there for all of us no matter how bad you felt. I can not say Thank you enough for the help you have given to me over the past 2+ years. You are just the very BEST !!!!
I send you loads of LOVE with many Blessings for the days to come, I know they will be there for you !
I thank you, and also Dr. Marshall for making our lives livable again. I am feeling so much better and so thankful for it.
Keep up the fun!!.
Loads of Love always,
Pat
____________________
Pat: OA, FM, Osteopenia, MVP, Cervical radiculopathy, 125D,76 MP 3/07, Ph2: 3/9/10, Estrodial,Valium,Oxycod., Flexeril, NoIRs, low lux home, high Zinc sunscreen,covered up. New D25=4 . 1/30/10
|
barbski
Member in Phase 3
| Joined: | Tue Jul 20th, 2004 |
| Location: | |
| Posts: | 487 |
| Status: |
Offline
|
|
Posted: Tue Jun 16th, 2009 17:47 |
|
Barney said, re:my problem with low sodium (hyponatremia): This could have been taken care of by xtra salt, which is discussed on MP....clear back in 2005....some actually drank salt water.
Please read my signature line. You will see that I am actually taking supplemental sodium, at a high dosage, as salting food and drinking salt water had no significant effect. I do not appreciate the inference that I failed to understand the instructions.
Please note also that my hyponatremia has not been mild or transient as that experienced by many on the MP, but constant and moderate to severe. There is more detail in my progress threads
Sorry you did not succeed on MP.
Well my plan is just to take a break. Unless you know something I don't, it is too soon to judge whether or not I have had any success.
Thanks.
Barbski Barb
PS. If you have any further questions I suggest it is done by PM so as not to hijack Aussie Barb's thread. Ta.
Last edited on Tue Jun 16th, 2009 23:23 by barbski
____________________
CFS Lyme 125D50 Ph1Aug05 Ph2Apr06 brk Nov06-Jan07 ModPh2May07 Ph2May08 Nexium TR sodium zolpidem salbutamol magnesium citrate 25D (May05)
|
Juanita
Member in Phase 3
| Joined: | Thu May 3rd, 2007 |
| Location: | Alberta Canada |
| Posts: | 287 |
| Status: |
Offline
|
|
Posted: Thu Jun 18th, 2009 20:23 |
|
I am so proud of you, Barb. So, so, so proud of you. It takes real courage to do what you've done and are doing. My heart is full of feeling for you. You are a truly fine human being. And I'm glad that you are using all information and tricks to take your life and body to a better place.
I wish I could smoosh you up in my arms and hug you.
____________________
MCS, CFS, FM, CS, DH, stroke neuro, seizures, skin ca, IBS, eczema, irregular heartbeat| NoIR avoid light and D| Sept 21/07 25D-40.8ng/ml| May 7, 07 1,25D-35.8pg/ml
|
eClaire
Member in Phase 2
| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
| Posts: | 857 |
| Status: |
Offline
|
|
Posted: Thu Jun 18th, 2009 22:08 |
|
Like others Barb, having you there for me in the beginning (and through out) has been a tremendous help...always patient and kind.
Like some others on the MP, I too have struggled with more Benicar and only recently have gotten to the point where I can handle 40mg q4h after 2.5 years, which is a good thing since I need the organ protection of the higher amount. (I'm assuming the organ protection quality still applies at the same levels for those of us who react strongly to Benicar.)
I hope after the rest you find that you are able to manage the IP.
Best to you, Claire
____________________
38mo on MP; CFS FMS MCS COPD hypermob. IBS/GERD osteopor.; 125D48 25D<4;
NoIRs during most daylight outings & covered up; home w/o NoIRs
Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08 * Ph2.Oct-Nov08 * Ph1.Jan2009
|
Sunset
Health Professional
| Joined: | Tue Oct 16th, 2007 |
| Location: | USA |
| Posts: | 123 |
| Status: |
Offline
|
|
Posted: Thu Jun 18th, 2009 23:59 |
|
Aussie Barb, I am so glad to hear from your posts that you continue to improve! Sometimes it’s easy to fall into a rut while we are trying to forge ahead on our journey to recovery. I am always amazed by the body’s capacity to heal if it is just given the tools it needs to do so (As well as avoiding those things that hinder healing, like excess “vitamin D”!) I’d say that the bright side to experiencing some tolerable IP is that it’s good to know that the immune system is functioning and clearing out the harmful microbiota that has lead to so much discomfort and illness.
I think everyone in our community here has a much better understanding of how much energy goes into healing. It really is quite a challenge sometimes, but I like that you are taking charge of your emotional well-being; living well means being emotionally connected to our own thoughts and respecting our own body’s need to go at a manageable pace while recovering. I admire your commitment to achieving your own optimal health and I think that your story is a wonderful example for us to follow!
I read in your posts that you are using a techninque called Amygdala Retraining. While I’ve not yet checked to see what it involves, it sounds like it may be similar to a technique I use called The Emotional Freedom Technique (EFT). I have added EFT to my “tool kit” for managing excessive IP. If you are interested here’s the webpage: http://www.emofree.com/
Gary Craig, the individual who developed EFT, has posted a free manual on his site with all the tools needed to do the technique on yourself or on someone else. The website sells DVD’s for training professionals, but really all I’ve ever needed to use EFT successfully is the information posted for free on the website.
Best regards,
Sunset
____________________
FM, CFS, migr HA, low adrenal, RBC coinfection 11/07 1,25D70, 25D48, 7/08 25-D 21;11/08 25-D 22; 2/09 25-D 15.6; 7/09 25-D 11; 10/09 25-D 5ng/mL. olmesart 40mg+20mg SL, T4 25mcg QAM, T3 7.5mcg BID. NoIRs/limit lite exp
|
Aussie Barb
Member in Phase 3
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19553 |
| Status: |
Offline
|
|
Posted: Tue Jun 23rd, 2009 18:03 |
|
Thank You to All for your wonderful support..
Wednesday 24th June 2.30am. Update for this page.
MP History: previous page.
MP: 4 years and 9 months
No antibiotics since 8th February
No Benicar since May 24th.
Other meds: 1 aspro for pain or headache as needed. maybe 1 or 2 per day.
-Chelated Magnesium 500mg x 1 only as needed for slight muscle spasming or muscle soreness or start of headache. maybe 1 per day. frequency of headaches is decreasing further.
-Quercetin: 250mg x 1 only as needed for throat mucus/choky cough. maybe 1 or 2 per day.
Light: not avoiding light. Wear NoIRs in bright light.
Indoor Pool: Daily for 8 months for strengthening and mobilisation:
around 60 minutes work daily.
includes:
-alternate laps of walking with backstroke with walking + paddle. + exercises including squats and balance (counting so many of each exercise). I stop the walking /swimming at 45 minutes or before if I have had enough.
-can step up out of pool with L leg but not able to take weight on R leg to step up the steps out of the pool.
Summary:
-swelling: density of swelling is lessening. creases, wrinkles appearing.
-weight: has stayed same. body reshaping.
-physically: I have been working on and continue to push thru the hip/back/legs/muscle pain and stiffness, walking and standing on land.
Interesting to me to note:
As the pain has lessened, I can now feel that the other symptom making walking so difficult is heavy fatigue. Knowing THIS, gives me hope of more improvement.
I have been to the beach twice more. Being there is just heaven. I love the sand, and that fresh cool wind and the really cold water ebbing on my toes.
We take a small length of hose in the car to attach to the tap, to wash the sand off the walker wheels and my feet.
I do all walking in steps of walk/ rest on seat of the wheelie walker.
I have hung some more washing and brought it in. I continue to improve with going up and down the step. all good therapy.
I find it interesting to see myself improving and getting stronger with practice. This is giving me hope and I can see and feel that I am getting somewhere.
Daughter planted more pretty flower plants for me. I walk, sit, with the walker, as I can, around the yard to survey my Queendom.
IP level generally is lessening, but I can definitely feel it increase with any stress.
I am still fragile that way yet.
I had a couple of days of inexplicable depression.
I am taking more interest in some basic details around the home.
I have done a little, very little, sorting... but it is a start.
-eyes: remain glazed and bloodshot with black rings.
-sinus/choky cough continues. cough drops to resolve. and if needed, Quercetin.
-L leg is slower, feels heavier to move than R leg.
-very little tv watching.
-sleep: night: less wakeful with less pain
sleep deeply when asleep day or night.
-strength is very gradually improving.
-shower: standing. stability improving.
-standing time: can stand a little longer. sit to rest when needed.
-walking: doing more as above. walk rest walk rest.
-dressing myself more daily. -Getting me dressed is still exhausting at this point.
-cool weather
DH is supporting me in moving forward, making changes.
I am thankful for all support. Thank you All
All best wishes to All, Barb ...
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
|
scooker48
Member in Phase 3
|
Posted: Wed Jun 24th, 2009 00:48 |
|
Barb,
You are a special lady, and you deserve much happiness in your new found activities. I hope you savor every moment.
You documented discontinuing Benicar after May 24th. Possible to tell us how you did that? Did you stop all at once; that is, "cold turkey" or did you taper down?
I've tried cutting Benicar 40mg q6hrs down to Benicar 40mg q8 hrs, with no success.
Sherry
____________________
Necrotizing granulomas biopsy 10/88; Dx 12/04 Sarcoid liver spleen. 2/2/05: VitD 25/VitD125 62. 11/7/09 D25 at 6, Liver function normal 4/08; Wear NoIRs outside. No K creme used. 5/09 Liver and kidneys normal. ACE still high at 113 on 11/7/09.
|
Aussie Barb
Member in Phase 3
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19553 |
| Status: |
Offline
|
|
Posted: Wed Jun 24th, 2009 01:30 |
|
Thank you Sherry
I have written my MP History on the previous page. and have documented there what I am doing.
To summarise here: In Oct08 I started going to the pool and I started taking Benicar 40mg Q4H + using Quercetin and panadol. I was taking the antibiotics at the time.
I have always had to use the antibiotics to control the IP; never to create IP. and the antibiotics were not doing this job efficiently for the second time. The first time being when I was eventually hospitalised.
I had worked thru all sorts of meds adjustments, and eventually settled on trying less Benicar. End Oct08, I then weaned the Benicar down to 20mg Q8H (Q8H was just right... not sooner and not longer) and then, in time to 10mg and then 5mg. I was still reacting strongly to that and by using some of the info from the amygdala retraining techniques, I was able to manage the symptoms and stop Benicar 24th May 09. I give a link to info on these techniques on the previous page.
I was feeling sad, hopeless, stuck, stranded. a serious place to be. I had to find a way out of the physical and mental suffering for myself, and this came my way, so this is what I have done, and I am feeling much happier, seeing improvements, and hopeful of recovery now. as per today's post above.
There are some who are able to take Benicar more easily after having a break. This or similar technique may help others to manage their symptoms while on the MP.
all best, Barb ...
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
|
kenc
Member in Phase 3
|
Posted: Wed Jun 24th, 2009 01:58 |
|
It can be extremely dangerous to stop Benicar cold turkey. When I stopped Bencar cold turkey in the hospital, a few days later I went into atrial fibrillation and had a series of small strokes which resulted in a total loss of my vision. I stopped the atrial fibrillation and recovered my vision by taking sublingual Benicar. Even the neurologist who wanted me to stop the Benicar admitted later that if I didn't resume it, I would have been in even more trouble. Barb did the right thing. Thanks Barb for setting the right example.
PLEASE DO NOT STOP BENICAR COLD TURKEY.
At an earlier stage in the protocol I was able to stop Benicar cold turkey but why take the chance?
____________________
Crohn's Disease 1984, 24May05 1,25D=33 25D=8.4, 6Sep05 1,25D=29 25D=12, 11Jun07 25D=<10.4 1,25D=10, 15Sep07 1,25D=14.2 25D=16, 12Jul05 Phase1 + pred, 12Jul06 Phase2 + pred/dexa, 14Aug07 Phase2, prednisone, dexamethasone, testosterone, aspirin, levothyr
|
Karon
Member in Phase 3
| Joined: | Thu Nov 15th, 2007 |
| Location: | USA |
| Posts: | 74 |
| Status: |
Offline
|
|
Posted: Wed Jun 24th, 2009 17:58 |
|
My Dearest Barb,
Every minute....every hour......every day......You are winning!!!!
You are my hero! I'm so proud of you........As a woman, as a person,
as a mom, as a wife.........but mostly as my sister MPer! 
YOU GO GIRL!
XOXO
Love from,
Karon and Little Man Jake
in Ca.
____________________
LYME,PTSD,RA,CFS,ChronInflamDisease,
Depression/Anxiety
Naproxen/Tramadol/Valium/Flexiral/Otc sleepaid, PRN
|125D =73 25D=20(May08)| 25D=14.4(Jul08) 25D=14(June09)
[PH1-Apr08| [Ph2-Aug08] [Ph3-Apr09]
Lowlux Home Work NoIRS NoSun covered up
|
Karon
Member in Phase 3
| Joined: | Thu Nov 15th, 2007 |
| Location: | USA |
| Posts: | 74 |
| Status: |
Offline
|
|
Posted: Wed Jun 24th, 2009 20:08 |
|
____________________
LYME,PTSD,RA,CFS,ChronInflamDisease,
Depression/Anxiety
Naproxen/Tramadol/Valium/Flexiral/Otc sleepaid, PRN
|125D =73 25D=20(May08)| 25D=14.4(Jul08) 25D=14(June09)
[PH1-Apr08| [Ph2-Aug08] [Ph3-Apr09]
Lowlux Home Work NoIRS NoSun covered up
|
|
|
|
|
|
