I notices that my entry ignored many (but not all, strangely) of my paragraph marks, so sorry my entry is so jammed together.  Makes it a little harder to read.

 Reve'

Memphis,TN - FMSi [8], IBSi [9], rhinitis, depres (~20 yrs) CFSi [10], intestine, bladder, pelvic inflam., red itchy skin, anxiety (~5 yrs). CPni [11] titer 1:256.  CAPi [12] 6-07 Current NAC 2400 mg; doxyi [2] 100 mg x 2, Biaxin 250 mg x 2, supplementsi [13]

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Memphis,TN - FMSi [8], IBSi [9], rhinitis, depres (~20 yrs) CFSi [10], intestine, bladder, pelvic inflam., red itchy skin, anxiety (~5 yrs). CPni [11] titer 1:256.  CAPi [12] 6-07 Current NAC 2400mg; doxyi [2] 100mg x2, Biaxin 500mg x2, pyruvate, supplementsi [13].

Just talked to my doc's nurse and she told me that the doc doesn't believe in "die off "and is having me do some blood work to find out what's going on.  This is why this treatment is so hard for me.  My doc, although evidently well read about this treatment, has completely different beliefs about it, which I don't understand, and it is SO hard to try to follow the treatment protocol and feel comfortable with what is happening to me when everytime I have symptoms that you all correlate with die off, he disagrees.  I'm totally at a loss for what he is trying to do with this treatment.  He said he was trying to kill some of the CPni [11], so how can I NOT have die off?  He said my body's immunei [15] system was what killed the bugs and NOT the abxi [16].  Doesn't matter to me which does it.  If he believes my immune system kicks in and deals the final blow to the bug, why then wouldn't I feel my immune system doing it?  Maybe this is a case of semantics and translation through the nurse looses something.  Just wish I had some understanding because without it I feel like I'm not getting better, I'm getting worse.  If I don't have die off, what's the point?  I'm very frustrated!

Reve' 

 Memphis,TN - FMSi [8], IBSi [9], rhinitis, depres (~20 yrs) CFSi [10], intestine, bladder, pelvic inflam., red itchy skin, anxiety (~5 yrs). CPn titer 1:256.  CAPi [12] 6-07 Current NAC 2400 mg; doxyi [2] 100 mg x 2, Biaxin 250 mg x 2, supplementsi [13]

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Memphis,TN - FMSi [8], IBSi [9], rhinitis, depres (~20 yrs) CFSi [10], intestine, bladder, pelvic inflam., red itchy skin, anxiety (~5 yrs). CPni [11] titer 1:256.  CAPi [12] 6-07 Current NAC 2400mg; doxyi [2] 100mg x2, Biaxin 500mg x2, pyruvate, supplementsi [13].

It is unlikely you will win an argument with your doctor, so possibly the best course of action would be to only to go to him for your prescriptions. It is our experience that we do feel worse when the treatment finally reaches enough cpni [11] to allow the cells to die. This tipping point as Jim calls it, sometimes takes months to happen and can happen again at different times in the treatment. The other thing that will happen is that different symptoms will raise up at different times and you might feel worse in some parts of your body at different times.

Keep in mind that these symptoms are showing themselves as a result of the treatment. It might be interesting to get some results from your blood work, but again they may not show anything amiss.

What you can't see (but I can) is that 17 people have read your post, but it sometime difficult to find a 'right' answer to your questions when we clearly thinkwhat you are going through is die off, and we cannot explain it in any other way.   We know what it feels like to feel worse from this treatment and we also know what it feels like to get better too.   But we need patience and tenacity to carry on at times.

Michèle (UK) GFAi [17]: Wheldon CAPi [12] 1st May 2006. Daily Doxyi [2], Azi MWF, metroi [4] pulse. Zoo keeper for Ella, RRMSi [18], At worse EDSSi [19] 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

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Michèle (UK) GFAi [17]: Wheldon CAPi [12] 1st May 2006. Daily Doxyi [2], Azi MWF, metroi [4] pulse. Zoo keeper for Ella, RRMSi [18], At worse EDSSi [19] 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

Michele, 

If there is a "right answer" you have just given it to me.  It is good to know that there can be a "tipping point" causing more symptoms even after a period of no symptoms and even without provocation from more medication.  This would also explain why people taking Flagyli [4] pulses (which I don't take yet, so haven't experienced) sometimes feel worse than other times.  It may not just be the flagyl pulse, it may be die off just from the timing of many factors.

I just read  A Young Woman Comes Back to Life: Zednica's Story [21] and it  made me laugh and cry and gave me great inspiration. 

Thanks Michele for posting to me.  You are a good encourager.  I do feel better overall (strength, energy), even when I am feeling very sick and feel that I have room to continue to progress and hopefully this is just a sign of it and not something "else" like my doctor sometimes worries me with (although I appreciate his caution).  I will get the tests, but agree (and hope that) they show nothing unusual (other than the usual infectious bugs), as my instinct tells me.  And this is what I will think until evidence shows me otherwise.

Thanks again,

Reve' 

 Memphis,TN - FMSi [8], IBSi [9], rhinitis, depres (~20 yrs) CFSi [10], intestine, bladder, pelvic inflam., red itchy skin, anxiety (~5 yrs). CPn titer 1:256.  CAPi [12] 6-07 Current NAC 2400 mg; doxyi [2] 100 mg x 2, Biaxin 250 mg x 2, supplementsi [13]

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Memphis,TN - FMSi [8], IBSi [9], rhinitis, depres (~20 yrs) CFSi [10], intestine, bladder, pelvic inflam., red itchy skin, anxiety (~5 yrs). CPni [11] titer 1:256.  CAPi [12] 6-07 Current NAC 2400mg; doxyi [2] 100mg x2, Biaxin 500mg x2, pyruvate, supplementsi [13].

Reve, you are not taking enough charcoal. You need about 9-12 caps at least twice a day. This will help. All your side effects are expected. I am coming up on 3 years in August and had a strong reaction to my last Flagyli [4] pulse because I added green tea and Pyruvate. The only good bug is a dead bug. But mine don't seem to want to go easily. The itching is a sign of porphyriai [22]. Lots of charcoal, B12 and water. Sauna helps if you have access to one. Also try carrot juice. At least you have a doc who will treat you. Try dropping him some articles from this site. It's tough so hang in there--we know what it's like, One day at a time. And don't forget the Epson salt baths!!! Raven CAP since 8-05 for Cpni [11] and Mycoplasma P. for MSi [23] and/or CFSi [10]

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Feeling 98% well and going for 100! Still testing + for Cpni [11] since June '08.CAPi [12] since 8-05 for Cpn and Mycoplasma P. for MSi [23] and/or CFSi [10]. Also EBVi [24] and HHV6 NACi [3], Iodoral, T3, BHRT, Methylcobalamin injections, Nitro patch, LDNi [25] and Methylation supplementsi [13]

Raven,

Thanks so much for tips on charcoal, etc.  When do you take your charcoal caps to get the most effect out of them without messing up your meds?  I took only two caps last night and they helped some, so I will look forward to getting relief from more.  Do I just look up epsom salt on search engine on this site to find out about it (I assume it been discussed here already?).  How much epsom salt to use?  How often?  Can it give me a UTI, as I love baths, but just swore off them because of too many UTIi [6]'s in a row.    

My doc referred me to this site, so he knows it.  He just has his own mind and chooses to not agree with everything on it.  I respect him very much and he is smart, but I have to admit that my experience has been a confirmation of what I have read here so far and I do not understand as yet what is his philosophy.  He knew to use Biaxin, and it seems other docs are using it, but he has some very unique ideas about cpni [11] death and resistance  that I just do not understand, and he seems to think reactions are not good, while based on this site and my experience, I see them as a good sign (once I'm sure it is truly die off).

Thanks again for your very helpful knowledge about how to fight side affects.  Will definitely take more charcoal when sick.

 Reve'

 Memphis,TN - FMSi [8], IBSi [9], rhinitis, depres (~20 yrs) CFSi [10], intestine, bladder, pelvic inflam., red itchy skin, anxiety (~5 yrs). CPn titer 1:256.  CAP 6-07 Current NAC 2400 mg; doxyi [2] 100 mg x 2, Biaxin 250 mg x 2, supplementsi [13]

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Memphis,TN - FMSi [8], IBSi [9], rhinitis, depres (~20 yrs) CFSi [10], intestine, bladder, pelvic inflam., red itchy skin, anxiety (~5 yrs). CPni [11] titer 1:256.  CAPi [12] 6-07 Current NAC 2400mg; doxyi [2] 100mg x2, Biaxin 500mg x2, pyruvate, supplementsi [13].

At one point of my downward slide I had bladder infection after infection even though I was drinking cran juice.  I believe now, it was the CPni [11] making itself at home there.  I have had pseudo bladder infectionsi [27] as well, again CPn.

The other night was the first time I had the burning feet & hot legs symptoms some of our MSers have mentioned here.  It was a bit wierd.

so, here is the thing, as I was reading your post & you said you phoned the docs office with your symptom I thought "oohh no".  From all the reading I have done here about the reactions we get from die off I come here first, I will go to emergency before calling the man who prescribes my abxi [16].    I believe in this treatment & I don't want him to get cold feet.  Now, one year in, I can't risk it.

You need to be diligent about taking your moppers, have you increased your vitamin C?  I take 5 gms a day & add Emergen C when needed.  I also take yaeyama chlorella & chitosan which seem to be doing a good job.  Even so, suddenly, as you have experienced, die off can wreak chaos & havoc.

You are very lucky you have had some good times & it is very good you are taking your time.  As soon as I start feeling "better" I am then ready for another hit of the flagyli [4].

Expect the Unexpected

CFIDSi [28]/ME 32 yrs, FMSi [8], IBSi [9], EBVi [24], CMV, Cpn, chronic insomnia, Lymes, HME, Natural HRT peri-M, NACi [3] 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#10 1000 mg 3 days & 750mg 2 days, 5-17-8

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CFIDSi [28]/ME 32 yrs, FMSi [8], IBSi [9], EBVi [24], CMV, Cpni [11], chronic insomnia, Lymes, HME, Natural HRT peri-M, NAC 3 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#15 750 mg X 5 days 11-1-08

Ruthless1,

I have increased Vit C some but will see how it compares to yours. I don't know what Emergen C is?  Also am not familiar with yaeyama chlorella & chitosan but if it is for intestinal floral I take Flora Q 2, which seems to work well.  I'll look it up as I imagine you are talking about something else.  Thanks for info on bladder infectionsi [27].  I would not be surprised that they are not related to CPni [11].

Thanks for your helpful information.

Reve'

 

Memphis,TN - FMSi [8], IBSi [9], rhinitis, depres (~20 yrs) CFSi [10], intestine, bladder, pelvic inflam., red itchy skin, anxiety (~5 yrs). CPn titer 1:256.  CAPi [12] 6-07 Current NAC 2400 mg; doxyi [2] 100 mg x 2, Biaxin 250 mg x 2, supplementsi [13]

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Memphis,TN - FMSi [8], IBSi [9], rhinitis, depres (~20 yrs) CFSi [10], intestine, bladder, pelvic inflam., red itchy skin, anxiety (~5 yrs). CPni [11] titer 1:256.  CAPi [12] 6-07 Current NAC 2400mg; doxyi [2] 100mg x2, Biaxin 500mg x2, pyruvate, supplementsi [13].

Emergen-C is a product found in the USA that comes in packets & has some added B vitaminsi [14].  When I feel some die off reactions creaping in I dissolve 1-2 packets in water & down it.  Glucose works well too, but since adding the yaeyama with my green juice 1X a day & the Chitosan (a shellfish product) that absorbs fats but must be taken away from B vitamins, i have been able to take glucose for those emergency situations too.

CFIDSi [28]/ME 32 yrs, FMSi [8], IBSi [9], EBVi [24], CMV, Cpni [11], chronic insomnia, Lymes, HME, Natural HRT peri-M, NACi [3] 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#11 1000 mg 5 days 6-14-08

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CFIDSi [28]/ME 32 yrs, FMSi [8], IBSi [9], EBVi [24], CMV, Cpni [11], chronic insomnia, Lymes, HME, Natural HRT peri-M, NAC 3 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#15 750 mg X 5 days 11-1-08

Reve, three cups of Epson salts in hot (as you can stand it)water. You can even add some sea salt. I had the UTIs the first year. Found out I was catching them from my husband (you know how!) We had to modify things a bit. I now take cranberry caps but d-mannose also works (3 caps a day) with lots of water. I take charcoal before bed time and at 3pm in the afternoon. I also take melatonini [30] but I buy the sub lingual kind--dissolves under the tongue so I can take it at bedtime too. Hang in there. It is rough but worth it! Raven CAP since 8-05 for Cpni [11] and Mycoplasma P. for MSi [23] and/or CFSi [10]

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Feeling 98% well and going for 100! Still testing + for Cpni [11] since June '08.CAPi [12] since 8-05 for Cpn and Mycoplasma P. for MSi [23] and/or CFSi [10]. Also EBVi [24] and HHV6 NACi [3], Iodoral, T3, BHRT, Methylcobalamin injections, Nitro patch, LDNi [25] and Methylation supplementsi [13]

Rieve- In terms of the theory, it is the cryptic formi [31] that is the most inflammatory. So if you are doing nothing but potent protein synthase inhibitors you are building up more and more cryptic forms of Cpni [11], and more and more inflammationi [1].

Your doc is not correct about your immunei [15] system killing off the bugs, not the abxi [16]. It is true with many infectionsi [27], but not with an intracellulari [32] infection that your immune system can't reach, and in an infection that itself invades and compromises immune cells.

Don't worry about pyruvate. Follow the mopping up recommendations by the other posts, do it religiously, and get your doc to get you on the flagyli [4] pulses. He doesn't understand even basic microbiology if he doesn't believe in die-off. Mind you, you were told this second hand, so it may be distorted information, giving him the benefit of the doubt.

Have him talk to Dr. Stratton, who should be able to set him straight if he's open enough to even make the call. 

CAPi [12] for Cpn 11/04. Dx: 25yrs CFSi [10] & FMSi [8]. Currently: 300mg BID Roxithromycin, Bactrim DS 2x/day, Tinii [33] 1000mg/day pulses; Vit D2000 units, T4 & T3

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CAPi [12] for Cpni [11] 11/04. Dx: 25yrs CFSi [10] & FMSi [8]. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii [33] 1000mg/day pulses; Vit D2000 units, T4 & T3

Hi Reve, I agree with what everyone else is saying.  I did want to add that it was on 4/18/08, that you wrote that you had been feeling bad for a few days. it has only been 2 months and not several months since you last experienced die off.   It is frustrating that doc does not believe in die off.  I think it would be a great idea to try the calcium pyruvate now.  See how you do on that first.   It hopefully will lighten your cryptic load and help make flagyli [4]/tinii [33] pulse more tolerable. 

Mphs, TN. CFSi [10], hypoT (Hashi), adrenal fatigue, 37 w/hormones of 80,. right arm

neuropathy. + cpni [11], myco, EBVi [24], CMV. NACi [3] 4000mg, doxyi [2] 100-2xday, azith 250 m/w/f/sun, progesterone, estriol, synthroid, pulse flagyl, tini<

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Mphs, TN. CFSi [10], hypoT (Hashi), adrenal fatigue, 37 w/hormones of 80, right arm neuropathy. + cpni [11], myco, EBVi [24], CMV. Capi [12] began in 6/07. NACi [3] 2400mg, doxyi [2] 100-bid, biaxin 500mg bid since 7/08, progesterone, synthroid, flagyli [4] pulses