It just won’t leave me alone….

For every year I have been on this protocol it continually ceases to amaze me how something “else” gets added to my list of ailments.  I laughed at Raven’s analogy of “Whack a Mole”….. and can so relate as I have mentioned in a couple of posts to it being like “swatting flies”!

 

I haven’t posted here as diligently as I wished I had, or as others have,…. detailing my every adjunct change, or my ups and downs.  Oh, I’ve come here when I’ve needed to vent a few times and put in my two cents worth here and there for others/newbies.

 

I’ve had many windows of improvement, only to be knocked back down.   For the most part, my life is not normal, nothing is static, I still spend many days in the house, not feeling well, still limit my driving. But to look at me, I look fine!  I have had many improvements but still many setbacks.  I am thankful I am not where I was 3-4 years ago.  But I am still having major issues pop up out of the blue, especially when I start feeling well! 

 

In July/August of this year I started having extreme breathing issues (again). I, of course, have been of the mindset, if all else fails add Tinii.  Which I did… seemed to help for a short time.

 

Ultimately ended up in the hospital for 3 days (all pulmonary/heart testing was fine, with the exception of some gas conversion dysfunction in my lung (CPNi in my opinion).  The pulmonary doctor dismissed me from the hospital and told me “not to think about it”.  (I have learned NOT to discuss the CPN protocol or CPN with them as they do not believe it can cause the problems, most still hang on to the “high IgGi and IgM titers” are indicative of one having built an immunei response… )

 

Two weeks later, breathing issues again… had allergy testing done… tested positive for mold, Candida Albicans, dander, and some others.

 

Tried allergy drops and could not tolerate them (my heart/pulse would jump and start pounding and I was having to take a beta blocker to get my heart rate down).  I am assuming because I am allergic to Candida Albicans, and I still have a very high titer level, my immune system was overburdened.

 

Because I was having breathing issues, and because I have a high yeast level in my body, I thought perhaps I should back away from the ABXi for a short period of time and concentrate on the yeast. (I KNOW I have a high yeast level in my gut and blood from testing.)  I stopped ABXi for about a month. 

 

It was a strange feeling and made me somewhat panicky… what, no ABX?  Ah, am I an antibiotic addict

A month later, I started having SEVERE pain in my upper molar (#14).  Swelling my left maxillary sinus area, eye pain, and stabbing ear pain.  I was off balance and basically feeling terrible.  I have never had tooth pain, and this was excruciating. 

 

I did 7 days of Amox-Clav, I figured if it was dental it would help the infection, if it was sinus, ditto – at least until an (ahem) doctor could figure out what is going on.

 

I also had a dental thermogram which showed major inflammationi in my left jaw area which the doctor said was indicative of a dental infection.  (Now, he really didn’t know it was dental, only an assumption)…. It showed a major inflammatory area in my left jaw/cheek. 

 

After visits to the dentist, an endodontist, ENT (first visit with the ENT, well, he was a jerk, LOL)… trying to determine if this was my tooth or my sinuses.   

 

Started using a Nettie pot w/ nasal rinse, hot/cold packs on my face/, saline spray .The Nettie pot instantly took away the tooth pain!  The swelling was going down a bit, but still feeling pretty rough.  Then, BAMN, it went to my respiratory. Switched to Roxi -- was calming down a bit not subsiding completely. 

 

All testing results led to a conclusion:   sinuses

 

Back on Tini again…. Seems it’s the only thing that has gotten this back in control.  I took it for a week, two days off, and the issues were back.

 

So, I am back on the full protocol and taking Tini every day.  But am very concerned about my colon gut issue because being on the Tini is causing the splenic flexure area (where I have a “spot”) pain.   

 

I have tried Lauriciden and it amazes me how people here can take scoops full!  I took 3-5 PELLETS for 3-4 days and was writhing on the bathroom floor.   I have taken Diflucan for 10 days, olive leaf extract, well, most adjuncts that have been recommended.  I just haven’t been diligent over these years, (now I am paying for it).   I really don’t know if it is yeast or CPN.  In my heart I believe it is both.

 

The continual problem areas for me now seem to be: respiratory and gut.  My CPN titers, after 3.5 yrs of treatment are still high, I also had high Candida Albicans levels in my blood (both IgG and IgM) for almost 2 years.

 

Over the past month and a half I have tried stopping the Tini twice.  When I do, whatever is going on in me rears its head back up.. 

 

I am very concerned about all of this…. Did the month off the abx, set me back this much?  Have I reached a point of diminishing returns where I need to take Tini every day? (I am able to tolerate 750-1000 mg daily). 

  

Let me add I do NOT doubt the efficacy of this protocol. Heaven knows if I did, I wouldn’t have put myself through the 3.5 years of this J 

 

 But I do  wonder…..can some of us ever really stop CAPi? 

Ahhh, the great debate…… How do we REALLY know if/when we should stop. How do we know  if we are really eradicating the CPN or just keeping it simmering on low in our bodies with the ABX.  Does the major portion of success of this protocol depends on our geneticsi, immune systems and physiological makeup? 

 

I went back and read this post “<Comments on CAP variations from Dr. Michael Powell”<  it has me thinking… thinking….. thinking…..

 

I will admit there are many days I do get really tired and frustrated with it all.....but, for now... when all else fails, I add Tini.

JeanneRoz

       

Comments

Jeanne, the thing that has

Jeanne, the thing that has helped me the most with my Candida/fungal colon is cranberries. Here's how I've been eating them: http://perfecthealthdiet.com/?p=1296<.

Cranberry season is almost over but mixed berries should work almost as well.

I think it's really hard to address both the fungal and bacterial infectionsi at once. My fungal infection got worse while I was on the antibioticsi.

Best, Paul

Blogger at http://perfecthealthdiet.com<. 17-year chronic illness cured with diet and antibioticsi, nearly fully recovered.

Jeanne, Raven speaks for me

Jeanne, Raven speaks for me as well although I've never had periods of feeling normal.

I've lately come to think that we are dealing not only with bacterial infection(s) but virus(es) as well.  E.g., after 3.5 years on the protocol (me too!), while I have recouped the feeling in my right leg muscles, my cfsi has only gotten worse. At the end of August a definitive study which replicated a previous one was announced; researchers now believe that cfs is caused by a retrovirus.

Once our immunei systems are depleted, all sorts of nasty things happen. Makes it hard to plan, doesn't it? And it can be so boring!

So a hug from me too and please keep on posting.

Nancy

 

 

 

 

PPMSi-misdiagnosed 2001-diagnosed 2006. Probably caught cpni in birth canal but it didn't pass BBBi until my 40s. Minocycline 7 mos.- resulting bronchitis 5 months.Go to private m.d. out-of-plan. Wheldon CAPi 3/2/07 Stopped 12/12; resumed 12/13

Jeanne, My dear friend. You

Jeanne, My dear friend. You have tramendouse strength and courage. This illness has given me a chance to meet a wonderful, carring person. As we continue to battle these infectionsi we have a site that understands and offers us new stratagies.

Reflect on how sick you were in the beginning and see the improvemnts you have made. Read some of your old blogs to compare. You are getting better it's just a bump in the road.

Raven offered some good suggestions on the Lauracidin and the Colorex...a new approach to hit the virals and bacteria.

 Hugs...

 Bonnie

started Wheldon capi 4/21/08 for Cpni, CMV, EBVi, CFSi. Cap hold 4/09vascultis. Restart 9/09 with Dr.Powell, restore gut, 4000 D3, supplementsi,  Pos. Bartonella and Babesia, Rifampin 600 mgs and Biaxon 1 gram. 

Getting our immunei systems

Getting our immunei systems as healthy as possible is the key but it is not so easy. One of my tests for globulin was pretty low, but not low enough for the greedy insurance company to pay for the immunoglobulin infusions. The single shots are not available anymore. So I have to look at other options.

I feel just like you do---I am sick and tired of battle. And all the pills we take every day. But I keep on hoping that I will find the magic combination of things that will drag me back to a completely normal life. Like we used to have before we became ill. Maybe this will happen. I am just that much of an optomist.

I have experienced stretches of time where I did feel completely normal. And hopefully, will again. The more I learn about my body through these experiences and testing, the more pieces of the puzzle will come together.

So hopefully, you don't feel alone. You have company on this road. Just have the courage to keep going and keep learning. Hope is a wonderful thing--keep it alive in your heart and I will do the same.

Raven

Feeling 98% well-going for 100. Very low test for Cpni. CAPi since 8-05 for Cpn/Mycoplasma P.,Lyme, Bartonella, Mold exposure,NACi,BHRT, MethyB12 FIRi Sauna. 1-18-11 begin new treatment plan with naturopath

I was going to start my

I was going to start my response here with 'whiner', but people wouldn't understand I was being facetious. You've been through all that in the past few months and have never, ever, hinted at it?! You're one stoic cookie! Sounds like you're finally getting a handle on it, though, which is great.

btw: Type O here, as well. Hmmmm...

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

Hi MacKintosh,Type O? Do you

Hi MacKintosh,

Type O? Do you mean blood? If so same here, O positive. Could this be a new thread?

There are so many warm supportive people on here. It's great to read your interactions, very encouraging. Thank you all.

Clare

 Timaca, Rica and Raven,

 Timaca, Rica and Raven, thanks for the words of encouragement and support... Just needing to express my frustration a bit....

 Considering where I have come from I have made progress.  Perhaps I am hitting the level of "Herrings Law of

Cure" (i.e., healing in reverse order, so respiratory and gut may be the last frontiers [because they were the first]???)

There hasn't been much on this site  I haven't read about or tried... But for the most part I have stuck with the "protocol" (never did try the Pyruvate or caffeine.)  I did rotate my Azith for Roxi  and have considered switching to Minocycline (have a bottle of it in my stash) But, for the most part, stayed the course no matter how it made me feel.

 It's interesting Raven, my DHEAi levels were tested about 2 months ago and were very low...I  have read much on that and am taking supplementation (scarey when you learn how important DHEA is and with me having adrenal issues and no thyroid!) I have to take Cortef, as natural supplementation was not enough; AND, Cortef feeds the CPNi.  It wasn't until I started pulsing I felt I was keeping up with it.  

 I do take enzymes comparable to Candex as well as Kolorex and other yeast attempts.  I just need to be diligent and push myself through "that point"  with the yeast as well.    I wasn't diligent in the first year or so and it all caught up with me.  I am fairly confident I have a biofilms  as well. 

 I actually read the "Eat Right for Your Type" series of books a few years ago... I, too, am a Type O.  But thank you for passing on that information.

As mentioned in Dr. P’s analysis, there are no guarantees….. we really do not completely know what we are harboring..... or, if we can truly ever eradicate it completely.  I do believe it does boil down to insuring our immunei systems are as healthy as we can get them. But I am soooo tired of taking pills!!!!!

 It's frustrating to be continually blindsided by a new problem. I need to concentrate more on what the ravages of this treatment (and my lack of diligence) has done to it and keep on with the ABXi

And for now I'll push the Tinii as far as I can tolerate it and concentrate on rebuilding my immune system Yell IN the meantime, I guess  I'll just keep my fly-swatter and mole whacker handy. 

JeanneRoz

 

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

Jeanne, glad you had a laugh

Jeanne, glad you had a laugh about the title of my blog--but it really is not funny not being able to whack whatever is dogging our steps. Your reaction to Lauricidin is very revealing. I would consider going back to it and being diligent about taking it--even if it is a little at a time. I spoke on the phone to the grandson of the doc who started the company and he says to take Lauricidin a little at a time throughout the day. He said it is more effective that way.

The other angle you can work is to boost your immunei system. I have had good luck with Epicor, Transfer Factor and Thymic Protein. ProHealth sells the Epicor and Thymic protein. I was actually able to avoid the latest respiratory bug so far since I have beeen taking them.

Also might get checked for DHEAi levels as low levels can affect your immune system as my new doctor as said.

For yeast, I love Candex!!! And the yeast diet--low carbs and no sugar. I take two Candex in the morning on an empty stomach. It busted my yeast down to almost nothing.

You may also look at what you are eating for your blood type--if you know it. Changing my diet to suit my blood type has really improved my energy.

Hang in there. There is a reason you are fighting this. Just need to find it and nail it.

Raven

Feeling 98% well-going for 100. Very low test for Cpni. CAPi since 8-05 for Cpn/Mycoplasma P.,Lyme, Bartonella, Mold exposure,NACi,BHRT, MethyB12 FIRi Sauna. 1-18-11 begin new treatment plan with naturopath

JeannePlease let me add my

Jeanne

Please let me add my words of support - yes, this can get tiresome sometimes.  But, I know that you remember that our friendly, neighborhood bugs are just lying there waiting .... waiting....I am totally convinced that we have to get this down to whatever level it has to be before we quit!  As has been said a few times, we don't know where that is yet, but it seems you are really making some progress.  That is worth so much!.

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

Jeanne~I just want to give

Jeanne~

I just want to give you a hug for the days when you are tired and frustrated.  It is a puzzle, with the answers not yet clear.  And for those of us trying to get well, it can be a difficult journey.   I don't have any answers for you.  I can only say that I understand. 

Hugs, Timaca

 

on valtrex 500 mg tid

http://whispersfromthefather.me/<