Am I getting at the cryptic form?

Hello to you all. For almost a year now I have been faithfully taking 100 mg. Doxyi twice daily, Azithromax 250 mg. M-W-F and every 4 weeks Tinidazole 500 mg. twice daily for 5 days. This is after the previous year ramping up finally to do a few pulses, stopping, and starting the protocol again, etc.

I have improved but am still very limited as far as activities. For the most part I stay home, avoid stress and I don't do aerobic activities. Recently I re-discovered that grating cheese with a hand held grater or squeezing orange or lemons for juice are no good for me yet. I am so grateful I can still do most light housework chores, cook and bake and care for the needs of my two small dogs and three laying hens. But I do sit around a great deal of the time to recooperate between doing things. My pain levels and symptoms have lessened but it does not take much to flare them up to a greater degree. I am quite happy to report most of my brain swelling sensations are gone. When I feel a slight degree of increase in this regard it is inevitably from my overdoing it.

My last several pulses when I start the Tindamax I have a surge in energy and also feel my best during the pulse. About the 3rd day after my 5 day pulse ends I begin to feel less energy and symptoms begin to increase. Always before it was during my pulse I felt just the opposite. Quite wiped out and sicker as symptoms would flare worse. I am puzzled as to what this change means? Could it be possible that I have eliminated the EBi form presently? Could it be possible the cryptic formi is knocked down during the pulse giving me relief? But I thought when you killed it you had increased toxins which equals you'd feel sicker. So maybe that does not make sense? Please help me understand this or point me to where I can read about this if information is available.

I need to know if it would it be beneficial to do more pulses? IE: 5 day pulse every 3 weeks or 3 day pulses every other week? Would that be helpful or could it make the Cpni resistant to antibioticsi via the life cycle or something like that? If that makes sense?

Thank you for your suggestions.

MM

Comments

Thanks so much for your

Thanks so much for your encouragement. I was able to double my vit. D dose finally again. Then I had an upsurge of energy and wellbeing this week so I was able to get a much needed eye exam done and some more labs done as well. Yay! Busy week for me. But had to rest more between outings which is per usual. Anyway, I feel great accomplishing these goals. :D

I look forward to trying a longer pulse as the Tindamax seems to be the one that makes me feel better overall. Maybe I will be able to stay on it for awhile now? I will diligently take my probiotics as usual as well as my digestive enzymes, etc.

I still almost always feel worse... more heavy fatigue, brain fog, bloated, sometimes followed by internal noisy gastric intestinal gurgling ... after eating. My diet is strictly no sugar, very little fructose, very little gluten, mostly organic fresh eggs, no hormone white meat, organic veggies and rice with olive oil. Season with sea salt only. Oh, feta cheese as well as parmesean for flavor at times. If I eat anything else on a rare occasion then those symptoms listed above worsen by the degree of straying off my strict diet. Hope that paints the picture accurately for you. Was tested for Celilac disease and was negative. Not lactose intolerant either.

Besides, betaine, digestive enzymes, high potency probiotics & FLorastor, liv-gall cleanse (includes milk thistle, etc.) yaeyama chlorella, what else can I do to heal my gut and avoid toxin overload and sluggish gut?

Over time I have noticed the times my gut is running right I feel the best so it has an enormous influence on my well being. Actually it is why I feel best now on Tindamax. My gut improves on it so everything else gets better. I did have stool tests done recently and no parasites, etc. I do have a high count of unnamed "bad" bacteria though. Figured that antibioticsi destroyed good bacteria so while off antibiotics for 10 days for the stool test the bad ones propagated. Doctor didn't say much about it but thought that made sense and recommended diligence with probiotics.

OK... enough for now. Your input, suggestions and support are very important to me. Thank you so much.  Hope you are having a good day. MM

2002:CFSi. (2008-09:CPNi - CAPi/5 pulses)  3/2010: Restart CAP: 200Doxy/250Zith-MWF/Tinii pulses. 6/2010: HighBP/Benicar, 7/2010: EBVi, HHV6. 2012: 6,000 IU daily vit. D., Citioline CDP choline = sleep improvement dramatic. 

The answer to the "gut

The answer to the "gut question" is:  lots of yogurt and acidophilus.  Every day I take at least four capsules of acidophilus and eat yogurt.  That is the only precaution I have used, but I never fail to do it - the consequences are dire, I've heard.  You can do this!

Rica

3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amox 1000, Doxyi 200, MWF Azith 250, flagyli 1000 daily. Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

Thank you Rica. I do not

Thank you Rica. I do not know why I still cannot grasp the simplest objects at times. I admit it is embarrassing at times. lol  But I do not let it stop me from pushing ahead through the thick cobwebs so that I can do the right thing to get well. Evidently my doctor does not grasp this yet either or would not have suggested the shorter more frequent pulses. I will look for literature at this site to share so as to clarify this issue. I am trying to re-read the handbook to find a good article but if anyone knows of one that makes the case I would be very appreciative.

It is so very interesting to read your experience Rica. Thank you so much for sharing it here with me. Your antibiotic regime looks to be a formidable one. However do you keep your digestive system running correctly? Or are you one of the lucky ones with an iron gut? I am pleased to hear that you have had a marked improvement. That makes it all worthwhile I dare say.

My best to you .... MM

2002:CFSi. (2008-09:CPNi - CAPi/5 pulses)  3/2010: Restart CAP: 200Doxy/250Zith-MWF/Tinii pulses. 6/2010: HighBP/Benicar, 7/2010: EBVi, HHV6. 2012: 6,000 IU daily vit. D., Citioline CDP choline = sleep improvement dramatic. 

The object of CAPi is to be

The object of CAPi is to be able to take flagyli everyday (or tinii), and the other abxi continuously WITHOUT any reaction at all.

Having said that, I thought I was getting no reaction when I did that for a month two years ago.  I was on Azithromycin, flagyl, Rifampin, and Doxycycline for a month.  Then I stopped everything except supps. Two months later I sank like a stone.  I then began the same protocol, with the addition of Amoxicillini 500mg bidi.  I have now done this regimen for twenty months and have surpassed my level of improvement of two years ago.  I will continue untill I have NO REACTION at all.

Rica

3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amox 1000, Doxyi 200, MWF Azith 250, flagyli 1000 daily. Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

Question? What explanation

Question? What explanation would be appropriate for my doctor to do longer pulses rather than the shorter (3 day every other week) pulse? My doctor is willing to listen to reasonable requests but if I do not understand "why" then I cannot convey it. Thank you for your time and help. MM

2002:CFSi. (2008-09:CPNi - CAPi/5 pulses)  3/2010: Restart CAP: 200Doxy/250Zith-MWF/Tinii pulses. 6/2010: HighBP/Benicar, 7/2010: EBVi, HHV6. 2012: 6,000 IU daily vit. D., Citioline CDP choline = sleep improvement dramatic. 

So grateful to you all for

So grateful to you all for your insights, encouragement and helpful suggestions.

Welcome Christinadl. Happy my post gave you the motivation to write. ;) Those periods of improvement are very enjoyable but fleeting. Hang in there. More to come.

As I had previously reported for several months my Tinii pulses were actually making me feel improvements and more stable during the 5 day pulse period. When I wrote this I had just began my next one. It seems rather ironic that only hours after I wrote this my present Tini pulse began to hit hard. So I am wondering why the difference suddenly. The first day I had my usual energy surge so on day 2 I was able to drive to the beauty shop for a long overdue haircut. After that I flared up horribly. Perhaps something in the air, such as chemicals, triggered it? Maybe it is PEM from the excitement of a rapid conversation with my animated hairdresser? Could it be exposure to more sunlight caused a surge of vitamin Di so that my immunei system kicked up a notch? All of these things? I do not know for sure so am trying to figure it out. Why am I becoming more sensitive whereas I was becoming lesser so a year ago?

Having said that...Yes, I am very grateful I have improved overall wonderfully on the protocol. I shiver to think what would have became of me otherwise. I will try to be patient but you hit the nail on the head. I had hoped to be more active by now so do feel some disappointment. But also I still have hope in going forward to gain more of my life back.

I am not happy to hear that I should eventually take Tini more than 5 days. The stuff makes my mouth taste so bad, my tummy queasy and both these diminish my appetite even for the slim choices I can digest. I am slowly loosing weight because of it so that now I am teetering on becoming underweight. Too many bones sticky out!!! LOL

Louise, you are quite right. I did have liver/gall bladder issues with high AST & the other one? forget now. But this year with monthly labs I have only seen one slight raise all year. The NACi along with digestive enzymes & liv-gall cleanse supplement has really kept this situation under control. Although at times my gall bladder and kidneys feel sore my tests show no abnormal levels thankfully. I believe my adrenal glands and thyroid gland are working just about normal but perhaps at times just slightily under par. So no treatment is advisable as most of the time they just meet the challenge.

I have been very interested in taking supplementsi to increase energy and support my methylation system. My doctor suggested I try whey protein to increase my Growth Hormone as it is low. Thinks this may be one cause of short on energy. But it flares my symptoms horribly so it sits on my shelf for future experimentation. I agree cleansing our bodies from toxins is the key to success in any treatment protocol. I need to learn more about doing it and take action. I know that the methylation support has helped a large percentage of ME/CFSi sufferers.

I hadn't previously held on to that Tini/Met pushes the EBi, RB into Cryptic formi. Did I get that right? So what brings Cryptic form out to kill it? My doc thinks I have a lot of Cryptic form left. Sorry if I don't easily understand such things. I have re-read info here but not getting some of it.

So sorry such long periods of time between my posts. I have been consciously focusing on anything else except myself and my symptoms. I avoid talking about it and thinking about it as much as possible. I try to keep my mind busy with games, books and such, although I admit I am following the news online about XMRV. My doctor is willing to test me for it when the test is more accurate but focuses on my test results showing C.pn as my main culprit to treat for now. That seems intelligent to me.

OK. I need a break now after reading all this then replying. Fuzzy brain coming on. Takes me forever to write these. Hope I made sense and hope you all forgive my absence. I think of you often and am so grateful in my heart that I know you are here. Thank you so much. I will come back later when refreshed to read this again.

Sending you all my best.

MM

2002:CFSi. (2008-09:CPNi - CAPi/5 pulses)  3/2010: Restart CAP: 200Doxy/250Zith-MWF/Tinii pulses. 6/2010: HighBP/Benicar, 7/2010: EBVi, HHV6. 2012: 6,000 IU daily vit. D., Citioline CDP choline = sleep improvement dramatic. 

Christinadl - Welcome! When

Christinadl - Welcome! When you you're bored and have nothing better to do (very tongue-in -cheek comment), go back to the beginnings of this forum and start reading for fun. You'll see all sorts of reactions, non-reactions, ups and downs, and everything else posted. Many of us have little reaction to the meds. Many felt energized at first, then lethargic during subsequent pulses. SO many responses, no way to truly categorize them. Yours will change, too, over time, and only then will you be able to see what 'your' patterns are.

I won't harp on it, but please be careful, pushing too hard, too fast. Killing too much cpni, creating too much toxic waste in your body and not being able to purge it quickly enough, can be a bad thing as it recirculates through the body.   I was just as enthusiastic and fairly aggressive in jumping into the protocol, but a pulse every two weeks is more than even I would have attempted.

That being said, congrats on getting started! 

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Thanks for the feedback, and

Thanks for the feedback, and for the welcome :). I will start a blog soon.. I just need to find the time to write everything out. Though your symptoms are different, it does make me feel a bit better that some do experience an increase in energy from metronidazolei. I've read a lot of posts on here, but I hadn't come across any similar experiences. 

Started CAPi on 12/05/2010 for RRMSi || Abxi: 200mg Doxyi / 250mg Azith T, Th, S / Metronidazolei 400mg tid, M-F every 2 weeks || Supplementsi: Vit C 1g, NACi 600mg x2, Vit D 4000iu, Alpha-lipoic acid 200mg x2, Magnesium 300mg, Omega-3, Vit E 300mg&

Christinadl, Miying, Jeanne

Christinadl, Miying, Jeanne and myself are not MSers.   It would be great for you to start your own blog and signature with your specifics so that folks can give you good feedback based on your diagnosis in relationship to the CAPi for you specifically.   I too had increased energy and elevated fever with my first few pulses.   The action of the nidazole drug is to force the bacteria into the cryptic state for CPni and Cystic state for Borellia B. so that  for several days before the die off of those transmuted bacteria starts as a result of the nidazole drug they are not affecting the cells at all and my opinion is, that the individual in treatent has more energy availablilty for their own cellular use.  That is the way I see it and it is not really that unusual, at least for those of us that have CFSi type symptoms predominantly.  

Please start your own blog for the best feedback for you specifically so that people can get to know you.

Welcome and I know it takes courage to begin to speak.

Louise

  • CAPi(TiniOnly): 06/07-02/09 for CFSi<
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDNi 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support
  • <

Hi - I'm new here... first

Hi - I'm new here... first post. I've been meaning to setup a blog and such, but I just had to comment as my reaction to metronidizole was very similar to what you are describing from your recent tinii pulses. 

I was officially diagnosed with RRMSi two weeks ago, but have been on CAPi for just over 7 weeks now. I've been following the Wheldon protocol, with doxyi and azithro both taken during the first week (no waiting time), and I began pulsing Metronidozole early and often. I took the first pulse of metro at two weeks in, but I did three days as opposed to five, then I began doing 5 day pulses every two weeks. Anyhow, (getting to the point) on the days I took metro, I felt amazing... better than I had felt in years. I had so much energy, and I was in such a great mood. My energy and mood went back to "normal" after I stopped that first pulse. I took a 5 day pulse two weeks later, and this time I just felt ok (not amazing), but then I felt a worsening of my symptoms around the third day after the pulse. I took another pulse two weeks after and the same thing happened again: two to three days later (Monday and Tuesday of this week), I felt extremely tired, dizzy and my vision was slightly blurred at times. Now I feel back to "normal." I was wondering what it could mean.

I had a slight herx-like reaction to NACi (which I began with other supplementsi two weeks before abxi) and during the early days of doxy + azithro, so I think I'm dealing with cpni. But, what would cause such a different reaction in me (and Miying)? From what I've read here, most people feel terrible during pulses and better after.

Started CAPi on 12/05/2010 for RRMSi || Abxi: 200mg Doxyi / 250mg Azith T, Th, S / Metronidazolei 400mg tid, M-F every 2 weeks || Supplementsi: Vit C 1g, NACi 600mg x2, Vit D 4000iu, Alpha-lipoic acid 200mg x2, Magnesium 300mg, Omega-3, Vit E 300mg&

 Hi, Miying,  I’ve been

 Hi, Miying,  I’ve been wondering how you are!  It’s great you are seeing improvements, but isn’t it frustrating not to have energy?  It will come, we just have to find the right combination for ourselves.      Energy issues are still one of my big 3. (But most of mine are attributed to my adrenals -- I am not producing  DHEAi among other things); and I do take energy supplementation.  Just as a double-check, in the whole energy scenario, have you had your adrenals tested?   

 I agree perhaps you may wish to start extending your Tinii pulses.   The fact it's not hitting you as hard may be an indicator to increase the number of days.  I reached a point where I no longer got energy increase from pulsing and per the protocol, my goal is to take it continuously (I am up to 10-12 days).   

 

This is a full-time job trying to get well and is overwhelming at times.  You’ll get there…. Just remember where you were vs where you are now. (My husband is very good at reminding me of that ;0)  You know your body… we just have to learn what to use and what works for us.

 Don’t be a stranger, Miying :)

JeanneRoz ~ DXi'd w/ CPNi 4/2007; 6/07 -"officially" dx'd w/CFIDSi/FM; also: HHV6, EBVi, IBSi-C, 100 Doxyi:BIDi<; 500 mg Biaxin BIDi; Tindamax Pulses, B12 shots, ERFA Dessicated Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 uni

Miying Good Day! Oh so nice

Miying Good Day! Oh so nice to hear from you again!

Wonderful that you have been able to keep on the protocol for an entire year now.  I lengthened out my pulses and just prior to going minimally intermittent two years ago I was up to a 21 day Tinii pulse.   I would do longer pulses with a 3 - 4 week interval for recovery, not shorter pulses more frequently if I made any change in a situation like yours, to answer your primary question.  A year at the form that you are taking seems fine to me and not sure that you need to make any changes considering the level of energy lack that you endure.  This process does take time.

It has been a long time since reading your background and challenges so please forgive if we have been through any of this before.   I may be wrong but I seem to recall that you had some liver challenges with the treatment.  And that can certainly be a drain on one's energy level in general.

I found the answer to my chronicly elevated liver enzymes when I had my methylation cycle genetic testing done through the Holistic Health Associates.  

I am genetically predisposed to decreased gastric acid (Betaine) and more importantly to decreased production of bile (salts) and therefore I was not removing my antibiotics quickly enough causing liver irritation.  

Once I started bile supplementation (over a year ago now)(Ursodiol is the pharaceutical version) (Ox bile is available OTC in the health food store or online) my residual but decreased elevations after stopping abxi finally went to baseline and also importantly, I had a remarkable increase in my general energy level to the point that I could tolerate sustained exercising activities.   Then I continued to add methylation supporting supplementsi and I had further improvements in my state of wellness.

I continue the bile supplementation to this day and will for the rest of my life.  I have no official dx  but in talking with a few people who have had the dx made by biopsy, for Primary Biliary Cirhosis (a genetically predisposed condition), this tx with bile substitution is the preventative, an aquaintance of mine who is about my size is taking 500mg twice a day of Urodiol and so am I at this point. 

So it now seems that it was never the Tinidazole or the abxi that were the real baseline cause of the liver enzyme elevations and no amount of NACi could have protected my liver for me, nor milk thistle that I took in maximum amounts for several months,  I had monthly liver enzyme tests during and after the daily CAPi and only the Ursodiol brought it down and that was after 8 months off all CAP.   

The good thing that I can say about my lack of processing the abx out of my system as quickly as most folks is that I maintained very high levels and likely did a lot of very intensive abx therapy as a result.  My CD-57 is remarkably improved well into the normal range and my CPni titers are much decreased.    So keep with the CAP it is worth the duration of the treatment. 

About your low generally available energy level, I would say that looking into methylation supports to support that cycle would have a beneficial effect in your ability to do more.  If your methylation processes are deficient then you are holding more toxins in your system causing energy challenges.

Your are at the point (one full year of treatment) that I was at when I started to investigate adjuncts to support my energy level, I began to know that I needed more supports in addtion to CAP (not instead of it though) my blogs are a record of those additions.  

In the following year and a half I add more and more adjuncts each having a supportive effect which I continue to use.

Miying, it sounds like you have done very well getting yourself through this past full year of full level CAP. congradulations!!!!   I know how hard it is to be always budgeting your energy and being unable to do so many of the things that you might want.   So I say begin to add in some other prospective energy supporting supplementsi

Your CAP sounds like it is just fine where your at with it currently, of course some others may disagree but that is what discussions are all about, getting different perspectives.  And you might want to consider adding in some other support solutions to your quest for wellness by supporting your physiology.

It is oh so hard not to get impatient for improvements and to want to speed up the process but you may well tip the balance in an unfavorable way if you try and go faster until you get more consistent general energy available to process the endotoxinsi.  Of course this is only my opinion but it certainly was true for me and my challenges.

It will be interesting to hear what other contradictory feedback to mine is put forth, makes for a lively discusssion of alternative perspectives.

Nice to hear from you, I too have been absent from much interactive posting here for quite some time.   Then again things are really going quite well after my several years of intensive CAP.     Louise

  • CAPi(TiniOnly): 06/07-02/09 for CFSi<
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDNi 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support
  • <