sorry to hear that :( how did you get the yeast? Do you take enough probiotics and supplementsi [6]?

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doxy200, azith250, NACi [7] 2400, Metroi [9] 1250(once a month), supplementsi [6], vitaminsi [10].

Yes, if our friends and family could walk just a day in our shoes they would begin to be a little more tolerant of us wouldn't they? I wish they could for just one hour but that won't happen so meanwhile have you been taking some of the "moppers"? It's not just on pulses that they are needed and I think you have hit the point where you need them badly. Of course the yeast infection would drag anyone down, CAPi [1] or not but I think that the fluconazole will help a lot.

There's nothing wrong with needing to be alone because we have to concentrate on getting better and allowing ourselves to rest and contemplate as necessary. You are still beginning this treatment and having to go slowly, so be easy on yourself - you may be back with your horses sooner than you think  if you allow yourself the time and space to heal.

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Progressive MSi [11] dx2006. LDNi [12] & CAPi [1]: Wheldon version. All supps. Doxyi [3] 200mg. Zithi [13] 250mg. Metroi [9] 400mg.Pulses #17...I can because I think I can.

I wish for you recovery of your strength and life. I hope you con return to training horses. Cpni [2] took everything from me, too, and family doesn't acknowledge anything is wrong with me. Metronidazolei [9] especially caused depression. I just kept telling myself, this isn't the real you, this is something chemical superimposed on you.

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Combined Antibiotic Protocol minocycline, azithromycin, metronidazolei [9] for muscle pain, insomnia, interstitial cystitisi [14], sinus, disphonia, dry eyes, stiff neck, veins, thyroid, TMJ.

Yes, we are names without faces, but we live this every day as you do. You have reached a hard place where you will need to confront the alternative staring you in the face. We all reach this place sooner or later, and some of us delude ourselves that we can live our lives as we were without going through all this, but, at least in my own case, I knew, under all the delusions and fog, that I would only get worse - and faster and faster - which I did for months, even on the protocol.

My advice - 1. Work on the NACi [7]. This is so important; it helps your body to expell one of the three deadly forms and it gives your hard-working liver some help. 2. Get your abxi [15] up to whatever level is required. 3. Do some mopping up of the toxins that are poisoning you. That can do wonders for your body and your mind. This is not a game - it is war.

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Rica PPMSi [16] EDSSi [17] 6.7 at beginning - now 2. Began CAPi [1] Sept, 2004 with Rifampin 150 mg 2xd, Doxyi [3] 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli [9] total 55 pulses LDNi [12] Rifampin 8/08 again NC USA

Bonnie,

Sorry to hear you're not feeling well these days. 

But you posted and that's a good sign. 

I too was a horse person, nearly all of my life.  I had to give them up due to the daily up keep along with breeding and showing Jack Russells and so much more it's hard to list here due to my illness and disability.   

I kept my steel horse (Harley) because I can park it for long lengths of time when I'm too sick to ride but there are times when I think I'll have to give that up soon as well, like recently.  Although I know this is only temporary (hopefully) and that I'm feeling poorly due to the die off and secondary porphyriai [18] it produces, there are times it feels overwhelming to me and that I'm never going to go anywhere but further down into a black hole.  

Let me just say that you're not alone and that learning how to manage CAPi [1] can be a chore.  It's not easy but the rewards seem to be great when I read the success stories of folks that have forged ahead before me.  Please don't give up.  I think you'll miss the miracle! 

Besides, what else do you have going for you?  I mean, what else can we do with these dreadful diseasesi [19] that standard medical treatment can't fix?  

Let me suggest (if you haven't already done so) for you to read the thread that Mary Ann started HERE [20] and the links we all provided to her.  I reread these posts over and over and over again when I feel I need support or answers to how to feel better.  For me, it seems a combination of diet, glucose, IR Sauna treatments, charcoal, chlorella, turmeric and SOD has helped me drastically.  

I learned of all these substances from reading on this site.  HERE [21] is my thread which explains what I've recently done to feel better and so far, so good, knock on wood!  In fact, I decided last night to take activated charcoal at bedtime instead of the cal/mag I was taking because I NEED the charcoal more right now.  The cal/mag will be taken earlier in the day now so I'll still fit it in.  

Just don't give up!  You will get thru this! 

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NACi [7] 2.4g, Zithi [13] 250mg/MWF, minoi [22] 200mg, Tinii [8] 5day/1g/5 pulses, Valcyte
Iodoral 12.5mg, Supps, CFIDSi [23]/FMSi [24], Hashimoto's, Psoriasis, PA, IBSi [25], Sec Addisons

Don't believe everything you think!  

Bonnie, the early months can turn difficult as they were for me.  Currently I am taking cholestyramine every 1 to 2 nights at bedtime.  Read my signature.  Charcoal did not do enough of a job on the porphoria fatigue and brain fog to help me personally.  Pmessage me for my suggestions on adding it and finding it.

Life will begin to get more stable.  Yes people, even close people cannot fathom the fatigue and other porphoria symptoms.  You can say the words but you look OK so must be more OK than you are suggesting.   CFSish symptoms are invisible.  Personality defects are often thought to be the cause by the uninformed.  Have one good day and it can be expected to be the rule.  Hard not to have hard feelings yet I have learned to let go of the subtle and not so subtle judgements.  I look towards the return of function and yes it is beginning to happen for me as I am now in my second year of treatment.

I too feel that folks here are among the few that really understand my challenges. 

Cholestyramine has helped me rid my system of fat soluable porphoria and endotoxinsi [26]. It is available and worth a try.

Louise

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Louise  CFSi [5],CPNi [2]+/Bb+(Lyme) Cholestyramine 1-2 pks @ HS for Porphyriai [27] +fattyEndotoxins HS PRN, Wheldon CAPi [1] 6/07,all supps, Doxyi [3] 200QD, Roxi 300BID, Tinidazole 500 BIDx20day Pulses, VitD3-10,000IU,Iodoral25mg,SAM-e100mgQD+B-vits, Pyruvate3.75Gm at 1PM

louise-where can you get it? I saw it is only available for doctor's prescriptions.i cant get it without that :(((

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doxy200, azith250, NACi [7] 2400, Metroi [9] 1250(once a month), supplementsi [6], vitaminsi [10].

 A warm cyber hug to all of you.  I think the cholestyramine may be worth a try at this point. The charcoal did help for a bit but maybe I need to check into other moppers.  I can't give into this miserable bug and the fight can be exhausting at times, but I do need to focus on the small improvements that the meds. have given me. 

 Thank you my unseen friends. I too want to be a examle to others who go through such unseen pain and  your input has done wonders.

  Reenie, I wouln't get rid of Harley. He sounds like a wonderful companion and still gives you joy to see him each day. Animals are wonderful at keeping our hopes alive.

                                             Bonnie

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started Wheldon capi [1] 4/21/08 for Cpni [2], CMV, EBVi [4], CFSi [5]. Currently on: all supplementsi [6],Doxy200, added Azith.250mgs M/W/F on 6/30/08. Naci [7] up to 1200mgs.as tol.Vit.B12 injections daily, cholest. prn. Start Tinii [8]. in Jan. if all goes well.

Viktor,

The Cholestyramine is a prescription drug. I think you may find it online somewhere if you wanted to try it. For myself, I'm not going to ask my Dr to rx me something else when I can use a combo of supplementsi [6] to help me feel better but that's just my opinion.

I think Louise has already given the charcoal a good try and it didn't help her. For me, it helps along with the other supplementsi [10] and IR Sauna treatment which is simple enough to do.

I also wonder if Questran [28] would even work well for me in that it is a cholesteroli [29] lowering drug and I have elevated HDL (high density lipids) only, which is actually the GOOD kind of cholesterol that aids in removing the bad fats (LDL) from my body already which is what this drug is supposed to do.

I think it would be interesting to know before someone used Questran/Cholestyramine what their cholesterol levels and triglycerides were and how it worked for them in comparison to their HDL/LDL numbers.

HERE [30]'s another link I found on Questran.  

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NACi [7] 2.4g, Zithi [13] 250mg/MWF, minoi [22] 200mg, Tinii [8] 5day/1g/5 pulses, Valcyte
Iodoral 12.5mg, Supps, CFIDSi [23]/FMSi [24], Hashimoto's, Psoriasis, PA, IBSi [25], Sec Addisons

Don't believe everything you think!  

ok then tell me whats the most powerful supplementsi [6] for porphyriai [27]. I read there are many and i already take some of them (Q10, omega3 fish oil, the B complex and B12 in high dose, also Vitamin C, bioflavionids) I ordered ac. charcoal and planning to buy some glucose as well. Any more suggestions?

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doxy200, azith250, NACi [7] 2400, Metroi [9] 1250(once a month), supplementsi [6], vitaminsi [10].

Viktor,

You can go to this page on  Reactions and Remedies [31] and find your reaction down at the bottom beneath the chart and read about the remedy.  

I also recently posted HERE [32] with what seems to be working for me but it looks like you've already been in that thread. 

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NACi [7] 2.4g, Zithi [13] 250mg/MWF, minoi [22] 200mg, Tinii [8] 5day/1g/5 pulses, Valcyte
Iodoral 12.5mg, Supps, CFIDSi [23]/FMSi [24], Hashimoto's, Psoriasis, PA, IBSi [25], Sec Addisons

Don't believe everything you think!  

hey horsey..

I too have been a horse woman for many years until a car accident-back injury side lined me from competition.  I have been watching all the equestrian events on a channel here that also shows the "not as popular events like sailing too"  The eventing is over, but dressage & jumping will be following! 

At least I can watch now.

Get back up on that horse & stay there!   You will see better times in treatment.  Get those moppers increased to counter the reactions.

peace

r

 

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CFIDSi [23]/ME 32 yrs, FMSi [24], IBSi [25], EBVi [4], CMV, Cpni [2], H1, chronic insomnia, Lymes, HME, Natural HRT peri-M, NAC 3 gm, Full CAP 6-2-08, all supplementsi [6] +Sea Kelp, Chitosan Pulse 16 1-4-09 1gm Flagyli [9]/day-3 days