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Aussie Barb
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| Joined: | Thu Jul 22nd, 2004 |
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Posted: Tue Apr 26th, 2005 19:22 |
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Wednesday April 27th Day 3 5.30am
Benicar 20mg Q2H day / Q4H night Q BID... probiotic BID..
lung and gut and body herx continues. nausea. fatigue.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Aussie Barb
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| Joined: | Thu Jul 22nd, 2004 |
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Posted: Wed Apr 27th, 2005 05:47 |
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I should probably write a summary once a month...
I have been fairly herxy unwell recently.
can see no lights at ends of tunnels while in this phase. no glimmers. just doing the work of herxing. so I know it is all happening.
The herx is lung airways / can go to cough wheeze at times.
gut.. / pressure feels like a pressure against me..
and full body effects: of puffiness, very sluggishness. inability to just stand anywhere.. can feel the *fullness / flu-ish* in my body of hard working.. I sit in my office chair, I walk to the kitchen> sit. and back> same. or else resting / sleeping.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Aussie Barb
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| Joined: | Thu Jul 22nd, 2004 |
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Posted: Wed Apr 27th, 2005 21:21 |
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.. Thursday 28th April 7am.
Today was abx due day.
I have decided to go off Benicar just to see if it can be done and how and etc.. Then I began thinking of some of the advantages for myself there may be in doing it..
Some of the advantages for me to give myself a break from doing MP may be:
to see how I am without the herx?
to get the immune system to stop.
and to start the MP again after a break.. >
Some have reported less / no intolerable herxing after having a break..
To feel better for a while.
The bacteria we are trying to kill are very slow growing, so an abstinence from the MP for a few days or even weeks will not result in a significant increase in bacteria or in bacterial resistance.
This break may provide me with an opportunity to assess my symptom relief without the confusion of Herxheimer symptoms.
Because it is ok to have a break.
because I have been doing it tough for a long time.
because our son has to have an op someday, maybe soon..?
and if I get this worked out now..... and.....
I can assess how much better I am without the herx..
and whether I can go off MP to go and be with him thru that. without having to suffer the inevitable flares from light exposure and Benicar.
so that I can know what to expect ... and so I can report back to you all...
I have begun:
I took my last Benicar 20mg @ 4am (will take no more till I decide to come back into MP)
and then took 25mg mino 6am,
with the idea of taking it more frequently prn (probably TID) to hold the herx at bay till it subsides.
will continue wearing NoIRs.. Like the MP I am a work in progress so I reserve the right to change my mind on any or all of this ..
I will be continuing @ MP.com of course...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Aussie Barb
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Posted: Thu Apr 28th, 2005 08:19 |
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Today has gone well. I am wearing NoIRs / avoiding light. I noticed that stress increased the herx immediately.
I have been doing it tough for a long time. (although I find that difficult to admit)
I feel sicker after 9 months on MP than pre MP because of herx. Among other reasons, it is good for me to take a break to let my body catch up, and to assess the healing I may have underneath the herx.
The last few weeks have been becoming more difficult. I need a break from herx...
it is positive all round.... a learning and preparing and healing experience...
I will continue to report the experience..
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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CLefelt
Member in Phase 3
| Joined: | Sun Oct 24th, 2004 |
| Location: | New Jersey, USA |
| Posts: | 318 |
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Posted: Thu Apr 28th, 2005 15:08 |
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Dear Barb,
I am sending good wishes for you during this stage of your progress. You are so sensible and caring and have helped me so many times on my difficult journey, and I want you to know I'm thinking of you.
May you return to the MP and the killing of creepy critters with renewed strength.
Carol
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Lyme Bartonella CFS FM Chly Pneu; Klonopin Florinef Lexapro TriEst Prog 10/04: 25D=9 1,25D=70 4/05 4/06: 25D=6.2 1,25D=20.9 8/06:25D=<7 1,25=13; Mino 11/36/04 2Abx 3/19/05 3Abx 4/27/06
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spacee
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| Joined: | Sun Sep 12th, 2004 |
| Location: | Florida USA |
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Posted: Thu Apr 28th, 2005 17:15 |
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Dear Barb, We are all behind you and understand. We have to be flexible to the changes life brings us. I am quite interested in learning about how you feel after the last months of rough herxing. You are in my prayers and you son too. Life doesn't stop just cause we are on the protocol. Yes, you are still on the MP even if you are taking a break.
Hugs...and thanks for all that you have been to me
Spacee
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CFS/FM/tachycardia/bladder and skin inflammation. C-Diff overgrowth 1995
clonazapan 1gm HS, Xanax .50mg HS, Premarin .625, Ultram 50mg BID Restart 9/15,NoIRs, No Vit D diet,Probiotics,11/12/04 25D=25, 1,25D=70, 9/9/05 25D 14, 1,25D 37. Beni Q6H, Mino 10
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Aussie Barb
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Posted: Thu Apr 28th, 2005 17:38 |
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Thank you all.. Friday April 29th 3.30am
Last evening I could feel myself *struggling thru fatigue.. and when I drank water, it was more pleasant.... the taste..... and the esophageal herxing gone.. different swallowing.
I took abx before bed, to see if I could get some more sleep time. slept well. Have woken 6H with anxiety herx and herxy body odor.
I have no *set plan.. I will see where and how this takes me... to feel the experience..
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Aussie Barb
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Posted: Thu Apr 28th, 2005 23:46 |
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9am ie 6H ..... thank you for all wonderful support.
sleeping a lot. woke lung herxy. esophageal swallowing herx. emotionally fragile.
took mino 25mg. will relieve. staying in cave. diligent light / D avoidance.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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kgg
Member
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Posted: Fri Apr 29th, 2005 00:36 |
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Barb, wanted to give you a (((hug))). I have been concerned with how badly you have been feeling lately. I think it is a smart decision to stop and assess. Wondering why you are continuing with the antibiotic? Won't this continue to make you feel worse?
Mark stopped both Benicar and Mino a week ago. He is sleeping an incredible amount but is feeling better every day.
I hope you too will feel better quickly.
Best,
Karen
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CFS 35+ years,FMS 6 years,Lyme(dx-6/04),ISAC syndrome, TMJ,tinnitus,HHV6,CMV,EBV. Basically always remember being tired.
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Aussie Barb
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| Joined: | Thu Jul 22nd, 2004 |
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Posted: Fri Apr 29th, 2005 01:51 |
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Thank You Karen:
This all began when 2 Members who needed a rest from running immune systems / intolerable herxing asked me if and how they could go off Benicar ... and that means comfortably without the herx raging further.
With the knowledge of how it could be done..
I needed to test it before I suggested it for someone else.... so that I had walked the talk..
I planned that I would need to, and have continued to take the abx to control the running immune system / herxing..
I spoke to Meg about this.... and Dr Marshall has always recommended a break *every few months*, so I trepidatiously began by stopping the Benicar.
Then ....when I thought about it more I realised all the reasons why it would be good for me to do this for myself anyway..
Previously re my son, apart from the fact that I am too ill to go anywhere to be with anyone in my present state of herxing health.......
What had bothered me particularly was, that yes I could go on a maintenence Benicar and abx dosing, but still was the diligent avoidance of light to contend with.. something I have not the energy for doing.... and not the ability to be *any more* sick than I already am....
By stopping the Benicar as well, solves that problem... The Benicar blockade is removed, and the effect of light fluctuations with it.
I can wear NoIRs quite easily... but if I am to be attending to Family business... 1. I have to know whether I will feel better than this without herx... and 2. I WILL be subject to light, and I need to do this in the easiest, most comfortable way possible for me..
Some Members have gone off MP for a break and have come back to feel better than ever.. so I am hoping to be one of them.. and I am hoping to be able to help others who have been or are in similar situations...
I planned that I would need to, and have continued to take the abx to control the running immune system / herxing.. It is now 32H since Benicar and I am still herxing... so Light will be added gradually as the next step to stop the herxing...
In doing this I am able to see my symptoms and herxing and how I was, more clearly, more objectively. It is all for the good..
I have spoken to Anne P (whose computer is out of action atm), who also needed a break from intolerable herxing, and she has gone off her Benicar yesterday morning and her herxing has stopped immediately with no need for abx. Anne is also, like myself, planning to continue MP again... after a break..
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Aussie Barb
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Posted: Fri Apr 29th, 2005 10:46 |
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8.40pm
am still sick and weak to stand.. my immune system still running.
I feel the herx begin pressing and I am taking mino 25mg Q6H.
will take mino 50mg to go to bed tonight to see if I get a longer time / sleep out of that.
I'm not in a hurry to stop the herx as it isnt intolerable... I want to learn what I can from the experience / and to assess how I feel after I stop herxing.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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DNStog
Moderator
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Posted: Fri Apr 29th, 2005 12:36 |
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Barb,
Want to cheer you on in your struggles since you're always there for others, and to let you know, that I spoke with Angela of SC last night. She had to go back to work in a store...lots of windows and flourescent lights. Phase I had been completed but she was afraid to pursue Phase II. Almost two months after going cold turkey from the MP, she is feeling good. She hopes to continue MP when she can better control her environment.
Know what you mean about stress, family crises, and MP. Personally, we are sitting on a time bomb with my elderly parents' health and hubby's cancer remission. I hope to get down that MP "bunny trail" before all H--- breaks out.
Hang in there you Awsome Aussie!
Hugs from Donna
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Sarcoidosis/skin, joints, lungs, nerves, Raynauld's, uveitis, hypothyroid, sinus, wt. gain, Peradontal disease, GERD-hiatal hernia, breast ca 11/06, 25D7, Synthroid, Wellbutrin, eye vits, melatonin, Milk Thistle, Quercetin, Rx glacier, cover up, low lux h
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Frans
Member in Phase 2
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Posted: Fri Apr 29th, 2005 13:34 |
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Barb,
Good of you to take some time off from the struggle. Like I said, sometimes you sounded like you had been hit by a train :-))))
I hope the herxing subsides asap and you will be able to enjoy your progress until now.
We are thinking of you and will be reading your posts.
Also the best of luck with your son's possible op !!!
All best and XOXOXOXOX
Frans and Ellen
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Burn-out/nervous breakdown Jan01 125D 48 25D8.48 Ph1Nov06 ModPh2Jan07 Ph2Apr08 Cipramil Seroquel NoIRs lite exp r/t work cover up 25D3.9(Oct07)
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Jill
Member in Phase 2/3
| Joined: | Sat Jul 17th, 2004 |
| Location: | Idaho USA |
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Posted: Fri Apr 29th, 2005 19:10 |
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Barb,
I am also temporarily stopping the MP, and want to share my experience and encourage you in yours.
I stopped benicar but continued abx for 2 days more. There was no difference so I stopped abx, also. I am concerned that abx in low doses without benicar as blockade and to assist in exposing the bugs, may only result in bugs becoming resistant. Only my opinion. And abx did not stop my continual herx anyway.
I do feel slightly better, it has been about 2 1/2 weeks. Still a long way to go, and I still feel worse than before beginning MP back in September '04. I am still very light sensitive, and have a flare with the least exposure. I still cover and k-cream and NOir as before, but still flare when I have to go out for anything.
It will be helpful to others to develop some kind of "suspension protocol" for the future, don't you think?
I hope you can soon feel some relief and be able to help your son
Jill
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CFIDS20yrs, hypothyroid,iritis, neuropathy, hip joints; 9/11/01 25D32, 1,25D74
benicar 9/11/04 @40/6hr; mino start 10/20/04, now@50mg.
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Aussie Barb
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Posted: Fri Apr 29th, 2005 20:08 |
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Thank you all.. Friday April 29th 5.30am Day 3 MP break mino 50mg NoIRs on
the mino 50mg dose has lasted 9H till I woke with airways and liver herx.
There is no way I could go without *something to delay the herx.. While I was doing full MP, the Benicar 20mg Q2H gave relief for 2H, and now the abx is. and I am aware that if I took a larger dose, it would probably last for longer but still be the same (herx) as pulsing mino without Benicar. What will stop the immune system run? as it seems to be that that is debilitating.... as in having permanent flu.
I find it difficult to relax the light avoidance. I dont want to take the risk / become sicker.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Aussie Barb
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Posted: Fri Apr 29th, 2005 23:03 |
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Thank you all. Meg and I are in touch, and Dr Marshall and I will speak more once he is home.
I do not wish to add any more sickness from stopping abx or having sunflares.. Light falling on the eyes causes neurological symptoms such as fatigue, iriitability, aggressiveness, lack of concentration, brain fog, photosensitivity, transient loss of memory, mood swings, confusion, anxiety, anger, neurosis and even psychotic symptoms. << I am not prepared to have that!!
I can go back on the MP this minute if I choose to.. but I want to learn about what is happening..
It is appearing to me, that my immune system has been running the whole time and the MP meds have been keeping all tolerable for me... the truth is.... I could not tolerate any less Benicar nor any more abx..
thanks, Barb ...
Monday May 2nd: following consultation with Dr Marshall: has advised that taking Beni Q4H does not cause Herx. "I don't think that increasing the dose of Benicar beyond 40mg q8h is going to make any difference to inducing more herx, it should merely create a greater palliative effect on any created herx."
"From a biochemical point of view there is no harm in reducing your light exposure to zero, in fact, that is what I would recommend.
From a psychological point of view, folks tend to want a little light around so they don't trip over things and so that they feel at ease with their surroundings.
Decreasing the light will make your immune system more able to kill the bacteria. But it will also make the brain more stable, and better able to deal with the surges in herx which will inevitably occur."
..trevor..
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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jolbell69
Health Professional
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Posted: Fri Apr 29th, 2005 23:07 |
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Hey Barb,
I`ve just managed to catch up on the updates as this week has been very hectic for me!!
I just wanted to say that I think you are making the right decision for you!! You need some `time-out`!! You have been suffering greatly for a long time now, and it is time for you to have some R&R IMO.
Please keep us all updated on how you are doing, and take good care of yourself!!
Thinking of you - as always,
Love,
Jo.xxxxxx
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DX:ChronicBorreliosis&Bartonella,ME/CFS,AutoimmuneThyroid&Hypoadrenia.
TX:Armour90mg,Prozac.Started MP:25June04.
25,D=16.7ng/ml,(Jan05).Benicar,40mg,q6h.Started Phase I:19May05.Started Phase II:16Sept05 Restart 8/05/09 VitD,25=8ng/ml(May09)
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Grace
Member in Phase 3
| Joined: | Tue Sep 14th, 2004 |
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Posted: Sat Apr 30th, 2005 00:28 |
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Barb,
enjoy your 'holiday', you have earned it.!!!
love
Grace
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CFS, oct04 Ds=26/48, 4/07=7/24 MP PHI 2/05, PhII 6/05, PhIII 6/06, beni Q6H, Noirs rarely inside no nature light low watt, outside 40%10%, Hat, all covered, no gloves, paracetamol
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Aussie Barb
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Posted: Sat Apr 30th, 2005 02:15 |
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MP break: for running Immune System: re stopping my Immune System:
I have taken mino 50mg last night and again this morning. will continue with mino 100mg BID..
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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BARNEY
Moderator
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Posted: Sat Apr 30th, 2005 06:22 |
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AUSSIE BARB,
YOU GO GIRL!! YOU ARE IN MY THOUGHTS ALL THE TIME. I KNOW YOU SUFFER SO MUCH.
HOPE ALL IS GOING TO BE WELL WITH YOUR SON!!
I THOUGHT I WOULD SHARE MY EXPERIENCE AT THE CONFERENCE WITH YOU. DESPITE THE FACT THAT I WAS ON MAINTENANCE MEDS TO GO TO THE CONFERENCE (BENICAR 20MG Q3HR, BENICAR 40MG MIDNIGHT AND 50MG MINO DAILY), I FOUND THAT I STILL HAD QUITE A BIT OF HERXING.
HOPE THESE FACTS WILL HELP YOU IN YOUR 'TRAVELS'.
BEST TO YOU  BARNEY
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar40/20mg&xtra
as needed,stage5,
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