Questions about Cpn

I have a 21 year old daughter that recently had a baby. After the baby was born, she complained of alot of symptoms that sounded rather like the MS that I have been living with for years. The MS first reared it's ugly head for me after child birth. I was told it was the stress on my body.

I have been wondering what the chances are that she is infected with Cpni and have wondered for a couple years if she will develop MS. She has had respiratory conditions over the years, most recently both her and my other daughter developed what Dr calls excertion induced asthmai. Can anyone speak to those concerns?

Also, why would MS be aggrevated by physical or other types of stress considereing the Cpn factor?

I thought I read somewhere how many people in the general population on average were infected or at least carrying Cpn by a certain age and I can't find it now. Does anyone know where I read that or can anyone answer that?

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SPMSii< Supplementsii & NACi, Doxyii 200 mg, Azith 250 mg 3X/wk, starting flagylii slowly

Todybear, the answer is yes

Todybear, the answer is yes to your daughter and famoly. As I remember the statistic you are thinking of is that by the time we humans are 50 or 60 years old, 70% have this bug. However, I was infected in TEXAS at age 11, 12, or 13. I mention the South because many doctors still are quoting the 47th or 49th degreee of latitude or whatever the old misconcertion was. If this is a bug, at some stage it is transmittable. I have a sister with MSi and one with bronchitis.

 

Rica PPMSi EDSSi 6.7 at beginning - now 2. Began CAPi Sept, 2004 with Rifampin 150 mg 2xd, Doxyi 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli total 50 pulses NC USA

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Rica PPMSi EDSSi 6.7 at beginning - now 2. Began CAPi Sept, 2004 with Rifampin 150 mg 2xd, Doxyi 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli total 52 pulses LDNi Rifampin 8/08 again NC USA

Todybear, Even if it isn't

Todybear, Even if it isn't manifesting as MSi, it sure sounds a lot like a cpni infection. Stress = inflammationi, which we all know isn't good for us. And having a baby alters hormone levels (which is why so many women experience a break from symptoms while they're pregnant). If she's not nursing, she could do the NACi test and see what the reactions are. I'm not sure about NAC while nursing (though my non-expert brain says it should be no problem), though.

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

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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

Stress feeds Cpni.   This

Stress feeds Cpni.   This is a very simple statement for a complex interaction between stress, cortisol and cpn.   Additionally during pregnancy a person's immunei system is held in check so as not to attack what to the body might appear like an invader, the fetus.   Once the woman has delivered her child then the immune system comes back online full blast and attempts to clear up parasites such as Cpn.  

A similar reaction happened to me after the birth of my children with regards to my alopeciai.   Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

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

Herxheimer vs. Porphyria?

Herxheimer vs. Porphyriai? Trying to sort out the difference between these two symptomatically. Can someone provide a quick thumbnail sketch of how they differ? In the Lyme world, new antibioticsi frequently generate a herxheimer response (initial worsening of symptoms followed by improvement), but I've never heard memtion of porphyria. Do antibiotics only generate secondary porphyriai when CPNi are present? Sorry for posting this here, I believe the question should go somewhere else, but not sure how to properly do that! 

DX: Borrelia, Babesia, CP, suspected Bartonella CAPi: Omnicef, Minocycline, Tindamax, Roxithromycin

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DX: Borrelia, Babesia, CP, suspected Bartonella CAPi: Omnicef, Minocycline, Tindamax

 This is a good description

 This is a good description of the different reactions. 

http://www.cpnhelp.org/five_ways_of_feeling_lous 

Daisy - Husband on CAPi 5/07.   Roxyi, Diflucan round three 4-3, Rifampin, Bactrim DS, Mepron, Prednisone, Novantrone, Doxyi, Azithromycin, Flagyli, Minoi

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Daisy - Husband on CAPi 5/07.  "When Going Thru Hell, Just Keep Going", Winston Churchill

  TB, you don't say what

 
TB, you don't say what symptoms your daughter has been suffering, but certainly as Michele said, a person's immunei system is held in check during pregnancy, but after finishing breast feeding all hell can break loose. 
  
Stress, whether physical or mental, does feed Cpni and thus can be seen as causing MS if a particular person is genetically likely to develop that.  By this I don't mean that it is a genetic disease, but that there are bits of the genome which make it more likely.
  
What your daughter is feeling could well be just the after effects of childbirth, but if it is more than that, she is in good hands with you as a mother to watch over her.............Sarah

An Itinerary in Light and Shadow by a real "Painter of Light"...........

Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still slowly improving and no exacerbation since starting. EDSSi was 7, now 2, less on a good day.

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Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after nearly four years, three of which intermittent.   Still slowly improving and no exacerbation since starting. EDSSi was 7, now 2, less on a good day.

I believe that this CAPi

I believe that this CAPi that I am embarking on is more than just for me. If it helps me then I can be armed and ready if either of my lovely daughters are diagnosed with similar issues. I want to get well soon to enjoy my new grandson. He was born 3 months early (weighing in at 2lbs 3 oz) so has been in intermediate care since December. He has just got off the oxygen support in the last couple days (now 7 obs 8 oz) so it won't be long till he comes home. They will stay with us for the first while; so poor poor me hey? I have to (get to) hold my beautiful grandson whenever I feel like it.

  

Supplementsi & NACi, starting CAP soon.

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SPMSi< Supplementsi & NACi, Doxyi 200 mg, Azith 250 mg 3X/wk, starting flagyli slowly

How wonderful! Such a tiny

How wonderful! Such a tiny baby and now well enough to fly the coop! Congratulations to her and to you. He's already such a lucky little boy!

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

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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

Lucky you! new grandson,

Lucky you!

new grandson, treatment! God is good, all the time.

If you do a search here, we did have some discussion about in utero transfer of CPni, mom to baby.  I am pretty sure I had CPn before I was pregnant as I had a bout of illnesses & accidents from age 18 - 29 when my daughter was born.

CFIDSi/ME 25yrs, FMSi, IBSi, EBVi, Cpn, (insomnia - melatonini, GABA, tarazadone, triazolam, novocycloprine, allergy formula, 3 gm tryptophan), Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse8 750mg 4day,375X1 3-24-8

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CFIDSi/ME 32 yrs, FMSi, IBSi, EBVi, CMV, Cpni, chronic insomnia, Lymes, HME, Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#13 1240 mg X 3 days 8-7-08

Tody, How lovely and such

Tody, How lovely and such good news that your little grandson is now out of the woods and ready to come visit his Granny.  

I would suggest that your read the Potbelly Syndrome by Russ Farris for a good undersanding of the role of Cpni in human diseasesi especially as you grow older.  David Wheldoni did a review of the book a couple of years ago which will give you an idea of its usefulness.

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

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

"Herxheimer" is actually a

"Herxheimer" is actually a very specific response to endotoxini: chills or fever, vasoconstriction, and other reactions. Simple "worsening of symptoms" is not, repeat not a Herxheimer reaction, although the term has been misused in this way. 

I try to sort out, although the overlap a lot, into endotoxin reactions, porphyric reactions and cytokinei (inflammatory) reactions. The thing unique to Cpni is the porphyric ones. Killing Borrelia will induce endotoxin reactions (Herx) followed by cytokine reactions (inflammationi). The Handbook talks about the differences in a couple of places.

http://www.cpnhelp.org/secondaryporphyria

http://www.cpnhelp.org/some_more_thoughts_on_por

http://www.cpnhelp.org/reactionstoCAPs

 http://www.cpnhelp.org/five_ways_of_feeling_lous

The differences between reactions are important, because they need to be treated differently. In the beginning it's really hard to sort out which is which. Pain is one overlapping symptom for example. Some of us have attributed all pain responses to inflammation, but a lot can be due to porphyria which competes with Gaba receptors (the circuits that dampen nerve responses like pain). Porphyria pain is unrelieved by pain killers generally, whereas cytokine inflammation is generally helped by anti-inflammatory meds. 

CAP for Cpn 11/04. Dx: 25yrs CFSi & FMSi. Protocol: 200mg Doxyi, 250mg MWF Azith, Tinii 1000mg/day pulses; Vit D1000 units, Iodoral 50mg, T4 & T3

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

Thank you Jim, the light has

Thank you Jim, the light has just gone on, may explain why I have had liver enzyme elevations on doxyi and roxi before tinii. Due to the endotoxinsi from the borrelia and the cytokinei inflammationi of the hepatocyte cells perhaps. 

So it speaks to the benefit of cholestyramine for me during the post 5 days of tini when in addition to the cryptic CPni are opened the Cystic Borrelia are open and then the active borrelia that are released meet the circulating doxy and roxi and also why the effects can be so late after the pulse has finished, the effects are generally those that you mention at that time of fever 101 to 102F for me with chills or the herx symptom combination.

Reducing the endotoxins and prophoria in the bile leads to less reabsorption and therefor decreases the circulation load of both of thoses fat soluble substances.

Louise

CFSi/ME.CPnPositive.BbPositive.WheldonCAPbegan6/24/07. NowNAC,Doxy, Roxi, TiniPulse#4 Ended2/3/08. Cholestyramine at BedtimeforPhorphoria&liposacarideEndotoxinDie-OffExperiences.

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Louise-CFSi, CPN+/Bb+ Wheldon CAPi 6/07, Cholestyramine1-2pksHSforPorphoria& Endotoxinsi, Doxy100daily,Roxi300BID,Tini500mgBIDpulses,VitD3-4000IU,MagnascentIodine,{S.O.D.3/QD[KAL Brand],+Pyruvate3.75G+SAM-eForEnergy}

 Michele, Ruthless and

 Michele, Ruthless and MacKintosh

If you only knew what a miracle boy this baby is. His mommy's water broke at 15 weeks and they said there would be no baby. She bled for 6 weeks off and on then leaked amniotic fluid. She went on bedrest and they did unltrasound every week. Baby was growing and moving, but very constricted due to the lack of fluid. When he was born at 28 weeks he was gravely ill in ICU for three weeks. Then he moved off the ventilator to CPap and then to the prongs. He now is off all oxygen support. He is a miracle for sure and we had people all over the country telling us that they were praying for him. He will have very fragile lungs, hypoplastic is the word they use as well as need to be protected from virus etc. We installed the air sanitizers that hospitals use in our house as well as Heppa filter air purifiers. Hopefully this NACi will keep me from spreading the Cpni around.

Supplementsi & NAC, starting CAPi soon.

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SPMSi< Supplementsi & NACi, Doxyi 200 mg, Azith 250 mg 3X/wk, starting flagyli slowly

Herxheimer vs. porphyria?

Herxheimer vs. porphyriai? Daisy, Jim and Louise, thank you all for your replies to my question. Very much appreciate the references, now need to go away and cogitate on this and my reactions to tx and various abxi. As you say, it's important to attempt to differentiate the cause, because it has implications for the most effective treatment. 

DX: Borrelia, Babesia, CP, suspected Bartonella CAPi: Omnicef, Minocycline, Tindamax, Roxithromycin

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DX: Borrelia, Babesia, CP, suspected Bartonella CAPi: Omnicef, Minocycline, Tindamax

Todybear - your family has

Todybear - your family has been through such an ordeal! We experienced in a small way some of what you're going through. Our twin daughters were born 5 weeks early, in a time when technology and resources for dealing with premature births were much more limited. We were very lucky, they are now 37 years old, beautiful, bright, healthy women with families of their own. Still remember though when my husband could hold both of them almost in the palm of his hand and how very frightening and helpless feeling that was. Wishing you and your beautiful grandson all the best, we'll keep him in our thoughts and prayers.

 

lnd belief Wishing you ffffffv dsccccccccygyyyia, CP, suspected Bartonella CAPi: Omnicef, Minocycline, Tindamax

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DX: Borrelia, Babesia, CP, suspected Bartonella CAPi: Omnicef, Minocycline, Tindamax

Jim, I read a post of yours

Jim,

I read a post of yours a day or two ago where you listed porphyriai symptoms and herx symptoms in a nice little list of each.  I can't seem to find that post anywhere now and would like to find it again.  Do you recall that? 

Also, do you suppose that some folks that have more porphyric symptoms as they advance thru the CAPi have more CPni while others which have more herx symptoms w/o the added porphyric ones may be killing co-infectionsi rather than only CPn?   Are there any other bacteria that can cause porphyrian symptoms?  

MP for 3 1/2 yrs. NACi 1200 mg/2x day, myco+ I (still) want my life back! CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Secondary Addison's

When I change what I believe I change what I do

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NACi 2400 mg, Zithi 250mg/MWF, minoi 100mg/BID, Tinii 500mg/BID pulses, Iodoral 37.5mg, Supps, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Secondary Addisons

Don't believe everything you think!  

Can porphyria be caused by

Can porphyriai be caused by killing any other infectionsi other than CPni would be my question also Reenie. Hopefully someone on this list might have an answer.  Your other point is good also, in CPn as the bacterial loadi goes down, do the incidences of secondary porphyriai also?

 

DX: Borrelia, Babesia, CP, suspected Bartonella CAPi: Omnicef, Minocycline, Tindamax, Roxithromycin

 

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DX: Borrelia, Babesia, CP, suspected Bartonella CAPi: Omnicef, Minocycline, Tindamax

 As far as I understand

 As far as I understand it:

Cpni is the only organism we know of that generates secondary porphyriai by parasitizing ATP. There may be other ATP parasites that would cause this, but I am not familiar with what those organisms might be. Perhaps someone can run this by David Wheldoni?

The degree of porphyria probably has as much to do with which particular tissues are infected, as with the degree of infection. The liver and bone marrow are the biggest producers of hemei in the body, so infection of liver cells and bone marrow cells probably accounts for the more significant porphyria.

At least for me, porphyria has lessened significantly over time. For me it certainly correlates with improvements in my mmune function both in very few colds and such as well as better measures in blood tests. I'm certain that my CFID's was due to bone marrow involvement. I also have much less liver discomfort and toxicity even during pulses.  Only Rifampin seems to kick my liver into a toxic state now.

I hope someone else can find that post, Louise, as I'm clueless! I repeat those  things about "herx" and porphyria over and over, even though it's all in the handbook, because I know that nobody gets it the first or second time through. Even having written the handbook material, I didn't quite "get" how much porphyria was operating in me until I saw it more clearly in others.  So I have a lot of sympathy with how many times it has to be repeated, as I don't seem to listen even to myself! 

CAPi for Cpn 11/04. Dx: 25yrs CFSi & FMSi. Protocol: 200mg Doxyi, 250mg MWF Azith, Tinii 1000mg/day pulses; Vit D1000 units, Iodoral 50mg, T4 & T3

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

Reenie, You may be refering

Reenie, You may be refering to this, which is an answer Jim gave to Sharon...   I've got into the habit of saving bits of information into a documents I keep on my desktop for the purpose.... I must admit though that I had to search for this particular one.

 

If you look at the Handbook you'll see my comments on this. The summary:

  • "Herx" is really a specific medical term which has come to be a catch-all slang for any reaction after taking an antibiotic or other killing agent. Therefore it is not useful, as it doesn't tell you what you are really reacting to.
  • Die-off reaction is just that, a reaction to bacterial kill. The specific die-off reaction can be:

1.     Endotoxini (chills, fever, coldness, etc)

2.     Cytokinei reaction (basically inflammationi, ie. pain!)

3.     Secondary Porphyriai dump (Irritability, depression, anxiety, pain, GI problems, headaches, blood sugar swings, etc.)

Each has a particular signature, although they overlap some. We don't use the term "herx" here because it doesn't tell us much useful, like what to do about it. The specifics have specific counter remedies.

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

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

Michele, Thanks!  That

Michele,

Thanks!  That snipit works.  It went something like that even if it wasn't this one exactly, not sure.   I think it  started out by Jim  saying something about he needed to update the handbook with the info in the post.  Maybe he did with this post. Wink

I'll create a word doc and file it on my pc under something related to Cpn and Herx/Porphyrian symptoms so I won't misplace it! 

MP for 3 1/2 yrs. NACi 1200 mg/2x day, myco+ I (still) want my life back! CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Secondary Addison's

When I change what I believe I change what I do

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NACi 2400 mg, Zithi 250mg/MWF, minoi 100mg/BID, Tinii 500mg/BID pulses, Iodoral 37.5mg, Supps, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Secondary Addisons

Don't believe everything you think!  

Reenie, I was thinking that

Reenie, I was thinking that the handbook might have the list that you are taking about I am so glad that Michele was able to share that with you.

Have you seen the bookmarks option at the right side of the computer screen as you scroll down?  This is where I attempt to keep track of Pearls of Wisdom that I come across on the site that I may want to use or locate at another time.  It is very helpful, I think it was suggested by Garcia and Jim was able to add it.

There is so much here that is useful information that I know I may need later or may want to share with someone when the topic is at hand.

Louise

CFSi/ME.

CPnPositive.BbPositive.

WheldonCAPbegan6/24/07.

NowNAC,Doxyi, Roxi, TiniPulse#5 day 2 in process.  

Cholestyramine at Bedtime for Phorphoria & liposacaride Endotoxini Die-Off Experiences.

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Louise-CFSi, CPN+/Bb+ Wheldon CAPi 6/07, Cholestyramine1-2pksHSforPorphoria& Endotoxinsi, Doxy100daily,Roxi300BID,Tini500mgBIDpulses,VitD3-4000IU,MagnascentIodine,{S.O.D.3/QD[KAL Brand],+Pyruvate3.75G+SAM-eForEnergy}

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