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Frans
Member in Phase 2
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Posted: Thu May 19th, 2005 11:18 |
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Yippieeeeeeeeeeeeeeee !!!!!!!!!!!!!
Great Barb !!!!
XOXOXOX Frans
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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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Aussie Barb
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Posted: Thu May 19th, 2005 17:39 |
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Friday May 20th 6am
abx combo taken 40H ago
Hard full body herx from 3H to 12H
then nothing ` ` ` ` ` ` ` ` `
Pelvic and gut herx 32H to 40H
lung herx is mildly there in the shadows...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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spacee
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| Location: | Florida USA |
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Posted: Thu May 19th, 2005 21:40 |
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What a rollercoaster trip you have been on! You got rid of the herx that wouldn't stop and NOW you are back. Hugs, Hugs, Hugs. We are all so happy about it
Luv ya, 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: Fri May 20th, 2005 06:46 |
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Friday May 20th took mino 25mg + 1/2 2nd abx earler in the day..
sneezy day.. tired, some dizzy.. gut inflammation..
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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 May 20th, 2005 16:00 |
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Saturday May 21st 4am thank you all....
I am still assessing where I am as I come back in. This is a totally different experience.. since going off and on and up and down with the meds, my continuously running Immune System has stopped. I am having little herx response to the abx at this level now. I am bored with little to sometimes no herx, so I will be increasing the abx later today if nothing more is happening..
Some have commented on their pale skin.. I have been in the dark for 11 months, and although faded, I am still tanned, have tan marks... I wonder if it will ever go away..
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Frans
Member in Phase 2
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Posted: Fri May 20th, 2005 19:16 |
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Barb,
How do you feel when you are not herxing? Especially compared to where you were before you started the MP? Do you notice any changes, improvements?
All best, Frans XOXOXOX
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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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Aussie Barb
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Posted: Fri May 20th, 2005 20:35 |
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Hi Frans
I dont feel better than pre MP yet.. Dr Marshall has said a few posts back to give it till Christmas..
I am really only getting back on my feet from the previous continuity... I am noticing the difference between herxing and no herxing.. The debility I have been contending with has lessened.. I am still sludgey and very tired, but not as weak as I was.
I am excited about the possibility of being able to increase my abx.. of being able to do MP.
Barb ....
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Tobi
Member
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Posted: Fri May 20th, 2005 22:37 |
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Hi Barb,
Such relief - wonderful news that you're feeling better. Are you able to document something like "THIS is what you do to control runaway herx" perhaps a FAQ if there isn't one already. Or is it too dependent on what specific abx one is on at the time?
The work you have done as a volunteer guinea-pig in this area is so valuable.
Take care
Tobi
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CFS,Rickettsia Conoori-,HHV6,Ureaplasma(all 3 culture,PCR) 25D 16.4ng/ml,1.25D 26pg/ml.Ratio 1,3 Blood probably NOT frozen Benicar 9/18/04 Mino 100mg 10/18/04 Phase 2 01/26/05
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Aussie Barb
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Posted: Sat May 21st, 2005 00:06 |
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Thank you Tobi
I thought that those who wished to come off Benicar because of 'intolerable herxing' would need more frequent mino to stop the immune system from continuing herxing... and decided to trial it to make sure...
I began the change on April 28th, and here it is May 21st already and still coming back... It has been interesting and a learning Journey as hoped and expected.. and with a seemingly good result.. I continued diligent avoidance of Light and Vitamin D.
I do think that I am less light sensitive now that I have stopped the immune system run than when I was in it.. I have been out to the Dr, albeit well covered, with no ill effects whatsoever..
I can comment from my experience that I see a difference between runaway herx, intolerable herx and a continuously running immune system.
The continuously running immune system caused debilitating weakness, and can come with or without intolerable and or runaway herxing ....
The sinking down down had been a very insidious process, - it happened slowly and there was a blurring of the boundaries of what was tolerable / how much can I take..... Others could see that I was struggling and I kept thinking / saying that I was managing and it was tolerable.
Both myself and AnneP felt for the last couple of weeks previous that we had lost the *I* in me / thee.. that we were lost from ourselves, that we couldn't relate to our partners.. and finally decided that it was an unacceptable state to continue in... that we couldnt continue to sacrifice this much of ourselves.. the cycle needed to be broken..
We each responded differently.. Anne it seems, had runaway herxing, and her immune system slowed, almost stopped, as soon as she stopped the meds..
I stopped the Benicar and needed frequent mino to clamp the herx.. Benicar will palliate herxing symptoms. more frequent mino will slow or delay the herx.
The question arose for me, "what will stop a running immune system" and there didnt seem to be an answer. not even on google. I decided that I had better ask for what I wanted.. for it to stop.. but decided that asking for balance would be a better option.. and that perhaps normal dosing schedule of abx may stop the run. and that it would take some time.
After some time the herxing was slowing, - but with not taking Benicar, my inflammation was coming back and I was losing some of the pelvic nerve and muscle body function I had gained on the MP. That spurred me back onto the Benicar.
With going back on the Benicar, I was immediately and happily able to go to QOD dosing of mino without a problem, and then back onto my usual dose of abx combo.. The first night that I herxed hard I thought the MP was over for me.. and then the herx stopped.. a miracle..
After months of needing Benicar 20mg Q2H to bear the herxing symptoms, - Q6H Benicar with the QOD abx schedule is fine now that I have no intolerable symptoms to control. by using the abx to slow the herx rather than trying to use the benicar to relieve the symptoms.
I think it is better for me to not go longer than every other day between doses.
and I learnt then that I was one who could not wait for the herx to lessen to increase my mino, that I had to increase when I felt worse.. is why I had been on the same dose for months waiting for the herx to lessen to make the increase..
I am looking forward to making progress thru the MP.
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: Sat May 21st, 2005 00:36 |
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as per messaged question " Why do you want to start it up again so soon? Why not take a few days off? "
Thank you, well, I guess that is a fair question..
reasons..
I am better on the meds than off..
and I am bored out of my wits with no herx...
I am so excited to get going now into MP..
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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: Sat May 21st, 2005 05:22 |
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| Saturday May 21st increased abx combo to 50mg mino + 1/2 x 2nd abx dose # 1
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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DaveW
inactive member
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Posted: Sat May 21st, 2005 17:35 |
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Barb,
That is very good news! Even if you should go back into the perma-herxing, your current experience should help you keep faith that it is only a matter of time...
I am very happy for you!!
and, in the battle of "bugs versus Barb", my money's on you!
Regards,
- 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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Aussie Barb
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Posted: Sun May 22nd, 2005 05:35 |
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Sunday May 22nd Thank you Dave and All..
It is 28H since abx combo and I could easily say I havent been herxing on the increase... but I have mild transient symptoms, dizziness at first, chills, running nose, mild cough wheeze when lying flat, itchy sticky eyes, plus tired / sleeping, heavy feeling. gut inflammation. feeling 'serious' at times, not actually depressed. am 'waiting to see what happens with the herxing..'
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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 May 23rd, 2005 04:32 |
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Monday May 23rd
I feel like I am not herxing much
but then was depressed last night and Benicar relieves..
and I had to take it sooner again (5H) today for uncontrollable cough..
and herxy body odor is back..
so, I am going around to 72H again to check if there is more herx..
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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 May 23rd, 2005 19:07 |
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Tuesday May 24th 7am abx combo mino 50mg + 1/2 2nd abx taken 7am
It is interesting to note the change since the *vacation*.
I am less debilitated, less ill now. I am much like I was pre MP, and the symptoms are similar, but I am still unable to *do* any more yet.. I feel close to it in my head, but cannot..
I can see why some cannot know that they are herxing.. so far now is easier than I expected..
and yet I am definitely herxing enough to sometimes have to take the Benicar sooner than the Q6H for relief of symptoms.
The puffiness has reduced some.. wheeziness is constant mild. depression herx is controlled by the MP meds..
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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 May 25th, 2005 06:01 |
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Wednesday May 25th 6pm 2nd day of 2nd dose.
This is a totally different experience now that the immune system run has been stopped.. it is very much like pre MP disease symptoms, just as herx is described...
Quiet but a full on herxing day..
sleeping, chills, hot, feeling the *seriousness*/ *dark cloud* herx again.. mild lungs crackle, cough, deep airways affected. runny nose. palate numbing. gut inflammation.
I feel as if body pain / sensation is *numbed down* all over me. an inflamed toe noticable by sight but not felt. All easily bearable as I am able to rest.
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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 May 26th, 2005 05:57 |
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Thursday May 26th 6pm 3rd day of 2nd dose at this level.
Very tired. sleeping resting.
antbite cramps back again, underarm and breast pain. heat helps.
same herxing as yesterday. brain lungs chest gut. all tolerable, one day at a time.
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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 May 26th, 2005 15:27 |
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Friday May 27th 3am took abx combo 3rd dose of mino 50mg + 1/2 2nd abx
ok... I think I have to make a rule. to take my abx QOD and not go into the third day.
It is like I go into a point of no return... I get into a herx that I say is bearable in the moment, and yet I am too tired and miserable and mentally incapable of disciplining myself to go and get the abx and take them.
I am not actively herxing at the moment, so I have 'made myself' go and take the abx.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Brad
Guest
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Posted: Thu May 26th, 2005 16:03 |
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Barb,
Brad found that to be very true, he was waiting for herx to subside to take antibiotic but that just continued the herx. he was much better off when he made sure to take them every other day and not wait for 3rd or 4th day.
Paulette
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CFS/FM 12years, Oct1/04-cut D-exp Oct25/04Noirs Jan3/05 Benicar40mgQ6H Jan19-25mg mino July9/05 2nd abx 100mg voltaren Nov17/04 1,25D-33.5, 25D-16.4, D-ratio=2 July/05 25D-2.5ng/ml
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Aussie Barb
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Posted: Fri May 27th, 2005 02:35 |
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Thanks Paulette and All ....
Today is better than yesterday. herx is beginning in gut.
today I have put up another dark sheet .... in my bedroom this time - as the winter sun has found its way down and around in to here now.. and thru the blind and the layers..
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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