A new theory?

Hello all,

Before reading my posting please be prepared for something unorthodox for this site. It is all related to my personal experience, which might be very different from yours.

I met today with two good friends of mine, who are doctors in local hospitals. One is infectionist, the other internist (maybe it's not the right term - he's dealing with the internal organs). The latter is really open minded.

They are both very skeptical regarding the duration of the treatment and the die-off reactions.

After discussing my evolution for 2 hours, they came up with an interesting hypothesis.

What if the cause is not chlamydia but a fungus of the microsporidia genus or something similar, maybe even unknown to the medical community yet?

They said my so-called die-off reactions might actually be a negative sign and I should rather stick to what causes rapid improvement. "Killing your normal flora might create a perfect breeding ground for the real culprits and make you feel sicker", they said. Then the tinii pulses will undo some of the damage and give you the false impression the treatment is actually working.

I have no idea what to believe.

To some extent, I tend to agree with them for the simple reason that I felt rapid relief after all of the following:

  • tinidazole
  • albendazole
  • oregano oil
  • onions
  • anti-yeast diet
  • minocycline

Guess what's the pathogen they all seem to disturb to a certain extent?

MICROSPORIDIA, a fungus known to cause serious infectionsi only in immunocompromised hosts. This is not the case for animals, which can get fatal diseasesi from them even when immunocompetent.

Since the microsporidia genus has only been recently discovered and includes over 1000 types of organisms, it is reasonable to assume there are enough potential human pathogens among them that affect healthy individuals the way Encephalitozoon cunniculi does rabbits. 

It is intracellulari, difficult to kill and has the potential to determine strong immunei reactions. 

Albendazole alone has proven effective in the treatment of human microsporidia so far.

The logical conclusion that follows is that in my case cpni, if present at all, can very well be a by-product of something unknown yet to the medical world.

The 2 doctors said not even the most stubborn bacteria should kick after 3 years on such a "destructive" antibiotic protocol.

While I haven't made my mind yet, I don't see what I can lose by testing their hypothesis. 

If they are right, I might be cured in a few weeks and if not, all I lose is one of the 30+ months on CAPi.

Cheers.

Comments

As regards "They also said

As regards
"They also said it's hard to believe I could feel something intracellulari moving, so they suspect worms."
a neurological infection can produce all sorts of feelings, and Cpni definitely infects the nerves.

Norm, I LAUGHED OUT LOUD

Norm, I LAUGHED OUT LOUD when I read your comment!

 Hey Tudor, I wish you blessings on your wellness quest.  Do not underestimate the devastation that is caused by CPni, especially if your immunei system is getting hammered taking care of "other" illnesses.

If men take DHEAi, will that make testosterone?  I take 7 keto DHEA as I don't "need" the extra testosterone.  Testosterone makes me quite pissy & aggressive!

 Expect the Unexpected.

peace

r

 

CFIDSi/ME, FMSi, MCS, IBSi, EBVi, CMV, Cpni, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplementsi+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyli/day-5 days<

Thank you all for

Thank you all for replying.

From these replies I have learned a lot about you, fellow sufferers, and about your problems.

Let me briefly address a few of the questions my blog posting raised.

Someone asked me why I posted under urinary problems.

Because of the following symptoms and test results:

  • urinary and genital irritations
  • urine alternating from dilute (like water) to dark (or maybe normally colored)
  • polyuric episodes - some huge, others not very scary. Several times in the last 2 years I eliminated around 10 liters a day. Regularly, the volume gets to 3-4 liters on the bad days and to no more than 2 on the good ones. There are huge variations from day to day and throughout the same day (this is what baffles doctors). No endocrine disorders have been identified (diabetes, diabetes insipidus, adrenal problems).
  • frequent urination (only on the bad days, when I also have polyuria). At times I had to go to the bathroom every 15 to 20 minutes. There are days when the interval grows to 3-4 hours, which is probably normal. No relationship to foods or other irritants could have been established.
  • impotence
  • groin pain
  • infertility (total lack of spermatozoids)
  • constantly low urinary ph (5.0 or 5.5). These values made urologists take genitourinary tuberculosis into account, but the lack of proteinuria, haematuria or bacteria in the culture make the diagnostic unlikely
  • etc

All the symptoms set in almost instantly, less than 2 years ago. At the same time I got an inflammationi below the heel (plantar fasciitis) and pain, minor inflammation and redness in the left ankle. Brain fog had been with me for almost two years at that time (on and off), as had fatigue, which had only rarely affected me.

I also had hip pain, without any damage found on x Rays and significant weight loss (20 pounds).

Due to the unusual presentation, doctors believe it's not a classical Reactive Arthritis, caused by Chlamydia or an intestinal bacteria. I tested positive for urinary Campylobacter, which might explain something.

The most wierd sensation is that of foreign bodies breathing and moving inside me (especially in the knee area, when I bend it a lot).

This sensation intensified and started to spread throughout both legs under treatments that seemed to have helped. This was not the case with doxi and azi.

Minocycline and tinizole are probably the only antibioticsi that are really doing some damage to the bug(s).

The 2 not so well informed doctors admit their limits and have not dimissed the CAPi.

They also said it's hard to believe I could feel something intracellulari moving, so they suspect worms. I have always had slightly elevated eosinophilia on blood tests, so they might have a point.

Microsporidia was brought into the discussion because it can cause terrible diseasesi in immunocompetent animals. The doctors were simply asking themselves if something from this genus can exist that affects humans the way e.cuniculi does rabbits.

It was a simple hypothesis that might very well be farfetched.

Their advice was not to get off the protocol forever but to make sure bacteria causes the damage before embarking on such a long term treatment. Worms can also depress one's immunei system.

My IgGi for CpNi is too low to suggest chronic infection, while for Chlamydia Trachomatis and Borrelia I tested negative (I don't have the classical symptoms either).

I will follow my friends' recommendation and get off the protocol for 1 to 2 months to test their hypotheses (microfilariae and/or microsporidiosis).

Microfilarie should have been killed by mino and doxi (there's been a successful clinical test conducted in London in which the worms died after 3 months on doxi, which killed the bacteria they lived in simbiosis with).

What to test then?

A combination of oregano oil, onions, garlic, ivermectin, albendazole + supplementsi. I will stick to NACi and the tini pulses, which seemed to have helped.

Yestereday I started a new cure of ivermectin and for the first time I got "die-off???" reactions to it (a wave of warmth, extrem fatigue, sleepiness, tingles in my legs, a big but brief polyuric episode at night). I've also felt those tingles after onions and oregano oil.

I have no idea where this experiment will take me, but so far almost all the pain is gone, which I interpret as a good sign. I still have significant but brief (1 to 2 hours) polyuric episodes and slight irritations of the urinary tract, but basically this is what bothers me most.

My hands and feet are no longer cold all the time, while the energy level is really good on some days.

No more brain fog and major depression (there's still some) either.

The symptoms might return while I'm off the CAP. I hope this will not be the case.

As for being positive and optimistic, I'm tired of it. It's also the chemical imbalances that prevent many of us from being optimistic.

Who can jump with joy with almost no testosterone left? I believe those who can still feel pleasure should try to have realistic expectations from the others.

I prefer to fight my current reality with all my resources and not lie to myself that I see the light at the end of the tunnel, even with the risk of bothering some members of this community.

Coping with the idea that I would have to suffer for several years before being able to enjoy life again seems too much at the time. This is what motivates my need for alternatives and my desire to question the effectiveness of CAP for MY disease (not yours). 

Have a wonderful weekend.

Tudor

On CAPi from June 2008 to October 9, 2008
Reactive Arthritis, polyuria, infertility, CFSi, CPNi (uncertain)
Now taking: Apple Vinegar - 5 spoons morning and evening, 2 spoons2 x 3 apples a day, Omega 3, Myco Plus, sangre de grado,

Tudor, I hope you find your

Tudor, I hope you find your answers about the best way to treat your illness so you can feel well again in the future,

Best Wishes from Maria

Cpni since sep 2006. Autoimmune thyroid,hypofunction.levaxin,b12+folic acid">i.All classic cpn,porphyriai and toxinsymtoms.Not able to work.Selftreating cpninfection with AllicinMax(garlic), NACi, high vitamin D3. CAPi for over 3 years. Back to work and life

You wrote:Who can jump with

You wrote:

Who can jump with joy with almost no testosterone left?

Answer: About half of the population: Women

 Daniela

 

Cpni diagnosed. Monotherapy Feb08 - April 08. Then full Wheldon protocol. Feb.09 first steps toward intermittent. NACi, Vit D 2000IU, B complex

Tudor, I thought you might

Tudor,

I thought you might enjoy reading this link.  It includes a letter by Dr Powell:

Comments on CAP variations from Dr. Michael Powell<

NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 5day/1g/5 pulses, Valcyte
Supplementsi, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Sec Addisons

Don't believe everything you think!  

Thanks Tudor for keeping

Thanks Tudor for keeping your persoanl New Theory discussion under your own blog space.  It helps me to keep your processing your own decisions away from and not mixing amoungst the data here that is supported by articles here etc.   

Ultimately we end up choosing our own path on the journey of healing.  We can give a certain amount of control over to medical providers but we are in our own skins and make ultimately our own choices.   

 I am now supporting my CAPi with a simply methylation protocol and other energy supports now that I have been on CAP for 16 months.  These are augmenting the improvements that I experience already with the Wheldon Variation of CAP for which I am most greatful.   I wish you well in whatever path you choose to investigate.

Thanks, 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
  • <

Tutor,I empathize with you,

Tutor,

I empathize with you, both on your sense of honest debate and your not really knowing what you are infected with. Welcome to the elete club you don't want to be in. The truth is none of us knows what the heck we are infected with. We are all grasping at educated straws.

If we even had lab tests for babesia, borrelia, bartonella, mycoplasmas, not to mention viral tests for active HHV6 and so on, then we would have to figure out how to treat them. No antiviral or antibacterial will ever kill all the infectionsi. That is why we have to work to strengthen our natural immunei responses and hope to God we find a few antibioticsi or antivirals that work at all.

 I suspect the two docs who are your friends are classic docs - they hate to admit how much they don't know. That doesn't mean they are stupid - it's just hard in 2008 to realize we have new, bad bacteria every day that is worse than leprosy or syphillis. (Read Paul Ewald)

Whatever you do, please keep whining here. I need company. I've been around the cfsi world tooooo long, and I now have a short fuse. I like to rant. I need all the ranting support I can get. Besides, you don't get well by being a good patient. You get well by questioning and fighting all the way.

Best,

Paula Carnes

Paula Carnes

Jim, a wise man once said,

Jim, a wise man once said, "kill it, before it kills you." I think he may have been talking about a grizzly, but it works for Cpni too. As for all of the "mud" that has been stirred up by one individual, I have made my own decision. Over the years I have learned a few things about a sort of person. I have noticed that the squeaky wheel gets the grease; I also learned that if the wheel is squeaking (or squawking if you prefer) and you just ignore it, it eventually falls off. My personal decision is to hide the grease gun and move on. People that are looking for an argument or validation get bored if they can't get it. My brother used to say, "Want a fight? Meet you outside, if I am not there, start without me!"

Lived with MSi since 1991. Completed 16 months of full CAPi plus supplementsi. Currently in full remission. Not on any antiobiotics anymore but taking all supplementsi incl NACi.

Tudor- I think Arthritic

Tudor- I think Arthritic covered all the points I would make about your friend's speculations. Frankly, I'd be more shocked that an infectious disease doctor could be so ignorant about long enduring infectionsi, as the difficulties of treatment for many organisms are common in his field, but I've run up against the ignorance of ID doctors before. While there are a lot of potential organisms out there that are probably being under-appreciated as problematic by modern medicine, I'm a little surprised at their grabbing hold of microsporidia, as it seems to require a significantly immunocompromized system for meaningful infection. Why are they so big on this particular bug? Seems a bigger stretch than one that has some meaningful research behind it.

I don't have any problem with your questioning the validity of the treatment strategy here, this is not the MP after all, and quite a few folks have strenuously questioned the approach over the years. As Daniela noted, we have to be able to question dogmatic approaches enough to sort things out.

I also don't have any difficulty with trying to address the polymicrobial nature of problems, as the singular approach of treating Cpni is sometimes not sufficient for those with multiple organisms affecting them. Please note that the agents you report responding positively to, including albendazole, effect a wide variety of organisms from bacteria to yeasts to viruses. Albendazole, for example, has been used to treat microfilaria worms (search this site for some discussions about them).

While I also find your tone annoying sometimes, I absolutely have no problem with empirical results. What's the problem here? If you are improving with those added agents then by all means add them in. Is there a problem with adding them to the CAPi you are on already? It seems to me that it would be more empirically valid to vary only one set of variables rather than switch everything so that you know what variables caused what reaction or improvement? To have more reliable data you would have to go through a long wash out period of stopping the CAP so that any reactions you get from the other agents aren't confused.

Personally, I'm not as big on having to be positive here, even though I know some people get freaked out about the freewheeling arguments here. There are enough people available here at Cpnhelp to give unrelenting support and encouragement if folks are in a bad spot, and do that regularly here. There are also, judging from the response to your post, enough people here to give you a hard time if it's argument you are needing.

Here's a theory. It seems to me that you have a direction you are already committed to, and yet seem to be looking argumentatively for some kind of validation for it. I think you are ambivalent about it, and keep playing out your own uncertainty by provoking counter arguments to what you have already decided but can't quite get yourself to go with yet.

The only thing I can say to ambivalence is, as my Dad prosaically put it, that eventually you have to "shit or get off the pot." Choose one, and let us know how it goes.

 

CAPi for Cpni 11/04. Dxi: 25+yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, restarted Tinii pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

HI Tudor~Good for you for

HI Tudor~

Good for you for being able to meet with and discuss Cpni with 2 doctors!  Certainly there is a decent chance that not only are we dealing with Cpn, but also another pathogen either not yet diagnosed, or not yet known to the medical community.   But, we do the best we can with the knowledge that we have.

It is great that you have felt rapid relief from several different treatments.  That does differ from my experience (where it has taken 4 months for me to see improvements on both antibioticsi and antivirals).   All that proves however, is that our bodies are different, and we are likely fighting different pathogens.

Here is a link to some interesting reading on microsporidia.  Looking at the symptoms, it does not seem like I am infected with it.   I appreciate you bringing to light another pathogen that may be an issue for us.  It is important to leave no stone unturned in this journey.

http://www.medicinenet.com/microsporidiosis/article.htm#1whatis<

Best,   Timaca

on valtrex 500 mg tid

http://whispersfromthefather.me/<

 

 

 

Michele, Since my latest

Michele,

Since my latest blog about "gathering nuts" which is about prepping myself for the next tinii pulse which I happened to have started today, btw, I have been trying to explain what I'm doing to family and friends like this: 

"If you don't hear from me for awhile it's because I'm taking what is similar to my next round of chemotherapy..."  

I think this is the best analogy I can use to try to explain to someone not interested in or not wanting to learn the science behind what I'm doing.  Maybe it's helpful for newbies too.  But it's so simlar in how it heals to something like chemo, IMOi.  In fact, chemo causes many to lose their hair, gain or lose weight, bed hug due to fatigue, causes depression and weakness and even nausea.

I have also commented on Tudor's posts mainly to try to steer him back to the science we are all working with here on this site and thank God we have some scientific basis for what we are all doing.  Tudor, come on now and work with us on this!  Wink

PS Why is this post under the heading Urinary tract problems<Undecided

NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 5day/1g/5 pulses, Valcyte
Supplementsi, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Sec Addisons

Don't believe everything you think!  

To answer the question,

To answer the question, 'why is this post under the heading urinary tract problemsi?'.....

Tudor will probably answer it best, but since it is in tudor's own blog, it is his/her choice.  Also, Tudor has issues with polyuria as I can see in the detailed signature.

Wheldon Protocol for rrmsi since Oct '05.  Added LDN 4.5mg qhs Oct '07.  All supp's.  Positive IGGi's for Lyme Disease,Babesia, & Erlichiosis Sept. 2008.  Currently:  Mepron 750mg bid and Azithromycin 250mg qdi for Babesia.

Jeanne I also have asked

Jeanne I also have asked Tudor to be more positive about his assessment of the different discussions he has taken part in.   There is a lot of information here about different aspects of both the disease and the treatment and as I told him there are always negative aspect to any treatment, but we have to focus on the positive if we are going to make it through a sometimes gruelling treatment.  

It is important to understand that not every treatment that patients undergo is going to work immediately and without difficulties.   You only have to look at leukeamia patients for example, my husband is one of these, they undergo years of treatment which is both unpleasant and hold no guarantees, if lucky they might get a bone marrow transplant, that process alone takes years to complete.   The treatment of TB is another long and painful treatment and there are other conditions where the treatment is gruelling or difficult to sustain such as RA, kidney disease etc.

 

Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse.

Hi Tudor      I think

Hi Tudor     

I think it's great that you have theories and ideas about your condition and the condition of others here too.  However, I have to agree with Jeeane that we here are banding together to cooperate with one another, in general undertaking the Wheldon and/or Stratton protocolsi.  So while your theories are interesting, it would probably interest us more if you could produce the results of your theories since we already have proven results following the Wheldon and/or Stratton protocols.  Most of us have come here because of the results that have shown the validity of what we're doing or trying to do.

best, John

RRMSi/EDSSi was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006
naci 4x600 mg/day
doxycycline 2x100mg/day
azithromycin 3x250mg/day MWF
metronidazolei 3x400mg/day then 3x500mg/day

Tudor.... I have to post

Tudor.... I have to post this. (I am going to say what others here are probably thinking)

Why don't you stop posting all the negativity against what we here are currently following, test your hypothesis on yourself, and come back if/when you are cured (or decide to join us) THEN maybe we could tolerate your condescending and obnoxious theories.

We are here to discuss and support each other through the Wheldon/Stratton protocol. It is the desire of most of us here to follow these protocolsi and support each other through them NOT to try and be dissuaded.

I do hope you find what works for you.......but you are becoming annoying.

 

 

 

 

 

 

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

If I had been flamed like

If I had been flamed like that in my early days on this site I would probably not have come back. 

 

CAPi for M.S. 8/2007 - 3/2009.  Twentieth pulse metronidazolei + INHi completed 3/12/2009.  Intermittent treatment thereafter until 11/20/2009.  

I am not so sure about

I am not so sure about some very strong  reactions here - perhaps I would better shut up then. However I defend the right of one's opinion, even if the said opinion has fundamental flaws and somehow remind me of "abduction by aliens " stories. I think we could discuss it. "We" meaning the folks on this list with a solid medical background. Don't forget, every theory can get bend the way it suits someone or suits a certain situation. I for one have a problem explaining everything with porphyriai or die-off symptoms but don't dare to voice my doubts. Let us not forget that this is not a religion but a sort of fairly successful clinical trial. There is always room for doubts, improvement or even failure.

Daniela

CPni, monotherapy Feb-April. Since then on full Wheldon protocol and getting my life back.

Cpni diagnosed. Monotherapy Feb08 - April 08. Then full Wheldon protocol. Feb.09 first steps toward intermittent. NACi, Vit D 2000IU, B complex

I am sorry, I have to

I am sorry, I have to disagree with these drs. I am sure as your friends they have the best intentions when advising you and you trust them as they are friends. But it sounds like they haven't read extensively on Cpni and therefore they simply don't know and guessing away. Also, why to look for some unknown to the medical world causes when something known like CPn has already been diagnosed in you if I undertand correctly?

 "not even the most stubborn bacteria should kick after 3 years on such a "destructive" antibiotic protocol"

Well, There are some stubborn bacterias that may not kick on such a destructive protocol. To name a couple of bacterias, out of well known diseasesi I'd say TB micobacteria won't kick. Borrelia that causes yme, may not kick.

 "Killing your normal flora might create a perfect breeding ground for the real culprits and make you feel sicker"

Killing your normal flora is indeed dangerous and that's why everyone on CAPi should be taking probiotics. For example, I take a formulation of 14 strains and 35 blns.

"so-called die-off reactions might actually be a negative sign"

My opinion is this on die-off: if you have a reaction or feeling worse, you continue on protocol and eventually improve than it was indeed a die-off reaction. I have experienced it a lot in the first 3 mns of CAP, not so much now, after 9 mns. Of course you got to differentiate die-off with other things like porphyria or developing yeast and some other coexisting factors. Die-off reaction is always negative for the body b/c it's a rapid and damaging reaction but one can counteract it efficiently with supplementsi and perhaps some medications. 

Tudor, I've noticed that none of your abxi are taken daily. May be twitiching the dosing of your protocol will result in better improvements? I was initially d-xed with reactive arthritis too before I tested positive with Lyme. I started with 3 abxi at once, 2 of them daily and Azith pulsing or 3 time a week (can't remember now). I had SEVERE die off. Now, after 9 mns period I have almost no joint pain although a tendonitis is still bothering me on a daily basis. Other issues also greatly improved.

Anyway, the point of my post is I wanted to weigh in for the long-term Cap protocol in case if Cpn was tested (+). Having said that co-existing infectionsi like yeast and other bacterial stuff should be explored and addressed if needed at the same time.

Good luck,

Nata.

 Arthritis. Currently on Rif 600mg + Doxyi 200 mg daily.  Cpn and Lyme (+). HypoT Hashi's.

Nata.

CAP Jan'08 to Dec'09 for arthritis. Doxyi, Rif, Azith, Bactrim, Minoi, Clarith, Flagyli, Amoxicillini. Re-started Dec.'10 for residual joint pain and painful heartbeat.Now: Mino 200 mg/day, Clarith  1000 mg/day, Flagyl 1000 mg/

...only in

...only in immunocompromised hosts.

Tudor, 

Although I'm not a scientist nor a medical pro, I have read and researched and the bottom line seems to be that there is much agreement in the medical community researching these infectionsi and more.  

Most researchers and Drs have come to the conclusion that the immunei system can only be compromised by BACTERIA and not fungus, yeast, nor viruses.  Even HIV only seems to take hold in the presence of a bacterial infection, which causes the "immunocompromised" host.  There has been much research on this "theory."  

Even Drs that use antivirals do so (mostly) in order to help the patient with an already weakened immune system hoping the immune system will be able to work again.  This is what CAPi is addressing; the compromised immune system.  It gets to the core issue.  You also don't have to kill all infections but you do have to kill off one nasty chronic one if you want to allow the immune system to be able to kill off the rest.  

"When you hear hoofbeats, think horses, not zebras"<

NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 5day/1g/5 pulses, Valcyte
Supplementsi, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Sec Addisons

Don't believe everything you think!  

Its a theory, but

Its a theory, but microsporidiae don't cause MSi in MS susceptible people and apart from asthmai and coughing and sneezing every winter, I have never had anything else wrong with me.............Sarah

An Itinerary in Light and Shadow

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.