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Aussie Barb
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Posted: Mon Mar 14th, 2005 02:23 |
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Thank you Jill,
I was under this pressure at Christmas time too, and I remembered and decided,
That anyone is welcome to come and see me if it is important to them.. otherwise I am on this errand..
Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Reenie
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Posted: Mon Mar 14th, 2005 22:26 |
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To all reading Barb's thread, (and of course to you too Barb)
It was such a blessing for me to meet those on the MP that are ahead of me and behind me on the MP. The MP takes TIME, but it gives us back our lives. What more could we ask for?
I just wish everyone and anyone that has a Th1 illness could have been at the conference to see the people I saw. There were people like Barney that were so grateful to be herxing miserably... hard for ANYONE else but us to understand that.
I think the most difficult thing to realize, since this was the FIRST conference, is that people like Belinda, Meg and Dr M were so very sick and many of them were DYING and now they're almost completely well after less than 3 yrs. It will be great to see those such as Barney, Barb and myself, at this level.
Yes, we need to 'hang in there and we WILL make it.' 
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Aussie Barb
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Posted: Tue Mar 15th, 2005 03:05 |
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Tuesday March 15th 4pm is Day 3 after abx dose # 4 at this level.
abx combo #5 dose (25mg mino +1/4 new abx) taken tonight.
Benicar 20mg Q2-3H day / Q6H night Q BID...
Lung herx has settled today. so Benicar out to 20mg Q3H for a change. Liver is high alert, needing / taking Milk Thistle. gut inflammation is high too. fatigue, but no Commitment Fatigue....
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aussie Barb
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Posted: Wed Mar 16th, 2005 07:16 |
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Wednesday March 16th 8.20pm is Day 1 after abx dose # 5 at this level. Q3D
Benicar 20mg Q2H day / Q6H night Q BID...
I was up thru the night again with bad esophageal reflux feeling. finally settled after some Beni. chills, transient. nose palate is numb (mild). gut inflammation / milk thistle to manage. constant lung cough herx is kept tolerable by Q2H Beni + Q BID. very tired.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aussie Barb
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Posted: Thu Mar 17th, 2005 07:20 |
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Thursday March 17th 8.20pm is Day 2 after abx dose # 5 at this level. Q3D
Benicar 20mg Q3H day / Q6H night Q BID...
Easy herx day. If I can call this herxing and be doing MP... it is the easiest it has been for me... and it is herxing. This dose level may be winding down? .. I seem to have experienced so many aspects of herxing.. already so far.. I am amazed and wonder what can be next.. (eek)
hard antbite cramp in chest / heart area and down left arm this morning.. heat bag relieves.. esophageal reflux relieved by Benicar. still taking Milk Thistle for gut and herxy body odor. some relief. transient numb palate /teeth. can feel my lungs but a better day. still much puffiness..
very tired. brighter this afternoon.
I am not so sluggish tonight. but I want to feel better than this before I say I am anywhere near good. still feel pretty awful physically yet.. strong mentally emotionally.
aahh well, it is all happening..
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aussie Barb
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Posted: Thu Mar 17th, 2005 11:39 |
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continuing Thursday March 17th 11.30pm is Day 2 after abx dose # 5 at this level. Q3D
woken 11pm Q54H with heavy pressure herx in diaphragm and lungs area. took extra Benicar..had to get up.. gut inflammation.. esophageal reflux as well.. relief coming from Benicar..
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aussie Barb
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Posted: Fri Mar 18th, 2005 07:09 |
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Friday March 18th 8.20pm is Day 3 after abx Q3D abx combo dose (25mg mino +1/2 new abx) taken tonight.
Benicar 20mg Q3H day / Q6H night Q BID...
herx is very mild today. transient mild numb palate to teeth. gut inflammation. esophageal reflux. fairly constant pain in big toe.. hips hurt when lying on them.. fatigue. crampy feel in back transient. herxy body odor continues / helped by milk thistle.
by the puffiness I can see that this is a big job that is being done, and has to be done, and that it cannot be hurried.. it will take as long as it takes.. I just have to keep chipping away.. am very tired, sluggish. emotionally stable.
More mentally emotionally stable. tailbone soreness that I used to suffer is no longer here. and no more of my feet hurting when I first get out of bed.. am very slightly more physically able than I was.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Carolyn
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Posted: Sat Mar 19th, 2005 01:47 |
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Hi Barb,
So nice to see you write "mild herx today!" Yippee!
Carolyn
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Depn1966; 2000FMS/CFS, Psor Tintus Msl/JntPn poss Sarc RLS PLMD disfunc sacrum| MP8/04| 1,25D59 25D37| 2Abx1/05| BackToPhI 2-2-07| 4-07 1,25D39 25D9| PhIIOn6-7-07
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Aussie Barb
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Posted: Sat Mar 19th, 2005 06:15 |
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Saturday March 19th 7.20pm is Day 1 after abx Q3D
Benicar 20mg Q3H day / Q6H night Q BID...
Thanks Carolyn.
This is the most non herxingest herx I have ever had..
apart from fatigue and inability to *function* mentally ( which I would tell anyone else was herx...and yet for MySelf have been declaring as non herxing.. )... I feel no physical herx till 3 minutes before Benicar due time .... cough cough.. amazing..
My skin has also been herxing again for the last few days.. hands that feel wrinkled from being wet too long, and they are not at all wet.. and oily skin.. herxy body odor / taking milk thistle..
some very mild cramp in Heart area at times.. (all this and I say no herx... hmm .. )
and if I havent taken the Quercetin for the day yet, I start to cry..... no I am not herxing.. hmmm.. well it doesnt feel much like herxing..
This must be a good reason to write a Report ....... to remember and put it all together...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aussie Barb
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Posted: Sun Mar 20th, 2005 03:14 |
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Sunday March 20th 4.20pm is Day 2 after abx Q3D
Benicar 20mg Q2 or 3H day / Q4H night Q BID...
Herx: if I didnt know these things were herx, I could explain them away as being tired or something else..
I was up thru the night with gut herx/inflammation. Very tired day, I feel awful really if I stop to think about it.. if I was a healthy person, and felt like this, I'd think I was dying... but we are so accustommed to living like this.. that we say we can *manage*. and we do..
today if *any food touches my *troubled tooth, it is the "chewing on metal feeling///...
I am happy, all is well, I am on my way to recovery..
6.30pm: My brain turned into marshmallow the last couple of days, and I was tempted to write it off as something else... but I did come to see that it was *a different kind of* herx than I was accustomed to.. and yes I have crying as a herx symptom..
The beni, with the backup of Q, supports me thru all this.. and I am able to go with the flow and let it all happen.. I dont push myself mentally or emotionally or physically..
MP is a *different kind of* Journey.. and at last we are *on the road to* SomeWhere!!
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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DaveW
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Posted: Sun Mar 20th, 2005 15:00 |
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(((Barb))),
I suspect that the trouble you are having getting started - reflects the tremendous potential improvement that awaits you once you get rolling.
I think that if a person has a very high level of infestation, then they are experiencing significant symptoms (equivelent to herx), just from the normal die-off rate of the CWD.
If a person were in this situation, then even a small increase in the kill-off rate could result in very high herx levels. Such folks could likely get herx beyond tolerance levels just from limiting D and sunlight. They could likely then face similar intolerable herx, just from starting benicar.
Of course, the addition of mino would also be a major adjustment for these folks. The tiniest increase in the kill-off rate (which could be thought of, as a percentage) can have major significance when it is applied to a very large population of bacteria (which would be represented by a single number).
IMO - the person with the higher level of infestations (and greater struggles getting started), would likely have much more to gain (in terms of better health and feeling better), than those folks with lower levels of infestation.
We pay a bigger price - but the prize at the end should also be larger!
You have demonstrated great courage and strength. Keep your eye on the prize Barb - it's a biggon!
I also wanted to address your acidy stomach/esophogus experienced at night.
I sometimes experience the same. I had a stomach motility study done several years back - which revealed "gastro-paresis" (or, slow stomach emptying). My stomach took approx 15 hours to empty a meal. When the stomach does not "push thru" food to the intestine, the stomach reacts (somewhat automatically) by pumping in more acid to increase the digestion rate. This is where all that excess acid comes from.
When mine is bad I take Pepcid AC (10 mg famitodine - available over the counter in Canada and the US) - which takes about 1/2 hour to become effective - but looks after the problem 100% for at least a half a day. This really helps me sleep.
When the problem is not severe, I have found that calcium can give immediate relief (as it neutralizes the acid), but for me, it can cause a "rebound effect" of even higher acid levels an hour or two after ingestion. Somehow calcium (in any quantities) also disrupts my metabolism. For example -it permits me to return to sleep, but then I wake up a couple hours later - wide awake (even though I have not had near enough sleep).
When I wake up with a really really bad case of acidity, I both nibble on a calcium tab (for immediate relief), as well as take a pepcid (which kicks in before the rebound from the calcium).
I have also found that not eating in the evenings really helps - especially spicy and canned foods.
I had these gut symptoms for a period of about 3 years - ranging from about 6 to 9 years ago. The only thing the Doctors could find, was low levels of inflammation in my stomach lining - which they could not explain...(at the time - without the MP).
The MP antibiotics have "re-aroused" the high acidity symptoms in me once again from time to time - so I know they are herx, and have every confidence that they will pass in time.
I hope some of these suggestions may be of help. (Especially - try the Pepcid AC if it is available - you will likely be surprised at how well it works).
All the best Barb. We're all in your corner!
- DaveW
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MP Aug14/04,Pre-MP D=19.6,1,25D=37 ratio 1.89 P2>12/27/04.Back to P1 fall/05.Back to P2 05/06. 21 yrs neuro-lyme not dx til 11/05. OlmesTR 40 mg/7hrs. Major: Weakness,IBS-C,pain,bad sleep,anxiety,depression,cognitive focus,memory,CMV,epilepsy & osteo
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FeatherRiver
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Posted: Sun Mar 20th, 2005 16:47 |
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Hi Sweetie - I've recently been blessed with the reflux issue in the middle of the night - I have found sleeping with extra pillows propped up and I think you were the one who recommended the charcoal pills - they are a miracle for me - work in an instant - and I remember someone saying to take them 2 hours after the Ben.
I'm glad the Milk Thistle is working for you, I thought that was mainly for the liver - I'm also having real issues with coughing - so I feel for you .
I just started my 24 yr old son on the MP, oh my, I had no idea he was so sick - now there are three of us in our home on the MP - this is REALLY special! God bless
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DianaF:CFS,Fibro,RA since childhood, Dysautonomia
VitD 22/33, 7-04,Started Ben.MP 5-04 Ben 40mg q6h + Mino 100mg q48h + Quer as needed, Phase II Started Jan 15, 05 Ben 40mg q4h stopped mino and Z temp 2/22/05
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Aussie Barb
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Posted: Sun Mar 20th, 2005 17:09 |
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Thank You Dave and FeatherRiver,
I use the Benicar as my first med of choice for all symptoms, including the reflux. I take my Benicar in 20mg (half tablets) as often as required... which is most often @ Q2H.. and sometimes has to be even sooner than that.
charcoal was what I used pre MP. and now that I have Benicar I dont use charcoal.
Milk thistle: you may have read here that I have constant high gut inflammation and herxy body odor.. which has liver involvement. I am trialling the addition of 1 dose of MT per day.
as Dave says, I obviously have high inflammation..and therefore resulting sluggishness of my body.. but the Benicar has been my protector from the start..
Thank you, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aussie Barb
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Posted: Mon Mar 21st, 2005 01:34 |
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Monday March 21st 2.40pm is Day 3 after abx Q3D no abx today.. prob tomorrow (day 4)
Benicar 20mg Q3H day / Q4H night Q BID...
Herx is mild (she says). Teeth on Left side are supersensitive to any food or fluid.. all basic herx symptoms remain.. high puffiness. gut inflammation..brain. painful hips on lying. mild cramps in Heart and chest and rib muscles transient. skin herxing continues.
am waiting an extra day this time for a bit of body catchup....
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aussie Barb
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Posted: Mon Mar 21st, 2005 22:49 |
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Tuesday March 22nd 12MD is Day 4 after abx Q3D abx.. abx combo #6 dose (25mg mino +1/4 new abx) taken tonight.
Benicar 20mg Q3H day / Q7H night Q BID...
slept really well last night.
I have had a note. "the protocol seems over whelming. Do you feel you are much better?"
so as always I reply on the Board..
Doing MP is a big commitment and does take *some time* and effort.. and I am worth every bit of it!
Dr Marshall says: "In any case, the bad news is that you are likely to have herxing for 18-36 months as you work through the phase 3 antibiotics. The good news is that you have been through the worst of the herx by the end of the first 12 months."
..Trevor..
We have been unwell for a very long time.. I know that MP does seem to take a *long time* when Life is calling us... but without MP we would be on our way downhill instead of to Health and a Future, << both of which to me at this time are words still beyond my comprehension.. except that I can see Belinda and Meg and Ms Dale and Dr Marshall able to get around living their lives...
How am I?
I am still very sick.. too sick to care about going out or doing things.. I feel physically awful.
I have been having heavy lung herxing... and I have never been an asthmatic.. but I know that means I have high inflammation in my lungs that is being dealt with.. That gives me great satisfaction to know this..
I have terrible gut inflammation.. I know this has made me so sick.. I look forward to this being dealt with, I also know it is going to take quite some time and herxing to do so..
Do I feel much better?
there are aspects of me that I have recognised as *better*.... so I know by the herxing that I am doing, that healing is occurring... and I have these very subtle but important improvements..
My tailbone stiffness soreness from sitting is greatly improved.. some of my skin *things* have improved.
I am no longer dependent on antidepressants for basic function..
My physical energy and ability levels are poor. I cannot stand around, I have to go from chair to chair or to bed. I have noticed a very slight improvement lately in that I can eg now get up from the table to get something if I need to.
I have a greater sense of self than I have had in my life.. my spirit is stronger. that is inner me..
I am sick yes, I expect to be feeling worse while I get better on MP. and I am happy to do this to *get there*.
maybe when I am feeling a little better I too will be straining at the bit, wanting to get out..
I am absolutely committed, and I wont be deterred by the pressure from Family or anyone...and there is much going on that is very important from a family perspective... but when does that ever stop?
I have given so much of my life till now.. now it is time to look after me until.... however long it takes.. I told them, "I daresay you will hear from me and see me when I am well enough to be there." (and the unspoken is "but until then....")
this is all I can think of at the moment.. thank you for asking, Barb ...
see this new FAQ:
What degree of healing is possible using the Marshall Protocol?
A description of what to expect on the road to recovery, treatment endpoints, and the gap between the public and medicine's perception of successful treatment.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aussie Barb
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Posted: Wed Mar 23rd, 2005 04:13 |
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Wednesday March 23rd 5pm is Day 1 after abx Q3D
Benicar 20mg Q3>2H day / Q4H night Q BID...
slept well once I went to sleep..
I woke feeling miserable and not knowing what was wrong.. pondering... ? all seems quiet... ? no herx...
and then I realised that I should take the Benicar more often ie. 20mg Q2H >> with relief..
Brain herxing can sometimes feel very much like no herx..
or, it can be a feeling of flatness, of being paralysed by misery.. no incentive, like no herx..
dramatic waxing/waning of symptoms doesn't always happen.
The anxiety of "am I herxing?" can be a herx..
depression and misery, sluggishness and battle fatigue are often not recognised as herx..
The reply to *How 'well' am I feeling right now?* ....may be more telling of the herxing...
It is not all *Happy Herxing* ...
apart from that: still very puffy, herxy body odor.. can feel my airways hot and tickly even though not actually coughing ... gut inflammation ever present. hot.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Jill
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Posted: Wed Mar 23rd, 2005 04:42 |
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| Aussie Barb, this is a great description of brain herx. Thanks. I'll try to remembe this one ;-)
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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: Thu Mar 24th, 2005 05:07 |
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Thursday March 24th 6pm is Day 2 after abx Q3D
Benicar 20mg Q3>2H day / Q7H night Q BID... Have had to increase probiotics to BID the last 2 days too..
slept well..
all is seemingly so *quiet*... seems like no herxing... but I need the Benicar @ Q2H to stay Ok.. interesting.. this is this sneaky herxing / brain herxing..
some other symptoms that havent had a mention, but I was reminded of today..
Pre MP: I have also had *squishy teeth / feeling loose in the gums, and with non-traumatic fractures and the Dentist had been at a loss as to what to do... and then came MP..
I have had *some teeth herx but I expect to have a lot more yet..
pre MP: re Hair loss.. my hair fell out a lot ..
and then with MP it stopped.. oh wow! I was impressed...
but it has very recently begun falling out again with herx too..
puffiness and gut inflammation continue..
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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kgg/mpg
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Posted: Thu Mar 24th, 2005 12:10 |
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Barb, I have to admire your committment. You sound so miserble with all of this herxing and odd symptoms. I am so sorry that this is so difficult for you. I will be celebrating with you the day you turn that corner and start getting a break! I also thank you for sharing your experiences. I plan on starting in the next couple of months and I'm sure will glean from your reports. It also helps me with discerning Mark's symptoms. You both seem to herx similarly.
Best,
Karen
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17 yr old, home bound. VitD1,25=38, VitD25=16
DX: Lyme,CFS, HHV6, EBV, mycoplasma pneumoniae, food allergies, learning difficulties and asthma.Current meds: Singulair, Neurontin, Prilosec, Zantac, Lexapro, Testosterone cream
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Aussie Barb
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Posted: Thu Mar 24th, 2005 15:52 |
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Thank you Karen,
re: "You sound so miserable with all of this herxing and odd symptoms. "
I wish not to sound miserable... What keeps me out of being miserable in particular, is Benicar.. taking it, as I do.... in 20mg (half tablet) Q2H or sooner sometimes, and the Q BID to back it up,
that, with the direct support of my husband and MPers.... mentally and emotionally I am ok..
physically I feel pretty yuck if I think about it, but by sleeping or being @ MP.com, I can keep my mind directed and I am fine.. I am content in my cave, and I love MP.com.. thanks to all...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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