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 [8] and one with bronchitis.

 

Rica PPMSi [9] EDSSi [10] 6.7 at beginning - now 2. Began CAPi [11] Sept, 2004 with Rifampin 150 mg 2xd, Doxyi [6] 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli [7] total 50 pulses NC USA

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Rica PPMSi [9] EDSSi [10] 6.7 at beginning - now 2. Began CAPi [11] Sept, 2004 with Rifampin 150 mg 2xd, Doxyi [6] 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli [7] total 55 pulses LDNi [12] Rifampin 8/08 again NC USA

Todybear, Even if it isn't manifesting as MSi [8], it sure sounds a lot like a cpni [1] infection. Stress = inflammationi [13], 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 [5] 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 [1].   This is a very simple statement for a complex interaction between stress, cortisol and cpn.   Additionally during pregnancy a person's immunei [14] 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 [15].   Michèle (UK) GFAi [16]: Wheldon CAPi [11] 1st May 2006. Daily Doxyi [6], Azi MWF, metroi [7] pulse. Zoo keeper for Ella, RRMSi [17], At worse EDSSi [10] 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

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Michèle (UK) GFAi [16]: Wheldon CAPi [11] 1st May 2006. Daily Doxyi [6], Azi MWF, metroi [7] pulse. Zoo keeper for Ella, RRMSi [17], At worse EDSSi [10] 9, 3 months later 7 now 6.5 Wheldon CAP 16th March 2006

Herxheimer vs. Porphyriai [18]? 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 [19] 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 [20] when CPNi [1] 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 [11]: Omnicef, Minocycline, Tindamax, Roxithromycin

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DX: Borrelia, Babesia, CP, suspected Bartonella CAPi [11]: Omnicef, Minocycline, Tindamax

 This is a good description of the different reactions. 

^{http://www.cpnhelp.org/five_ways_of_feeling_lous [21]} 

^{Daisy - Husband on CAPi [11] 5/07.   Roxyi [22], Diflucan round three 4-3, Rifampin, Bactrim DS, Mepron, Prednisone, Novantrone, Doxyi [6], Azithromycin, Flagyli [7], Minoi [23]}

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Daisy - Husband on CAPi [11] 5/07.  "When Going Thru Hell, Just Keep Going", Winston Churchill

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I believe that this CAPi [11] 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 [4] & NACi [5], starting CAP soon.

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SPMSi [3]< Supplementsi [4] & NACi [5], Doxyi [6] 200 mg, Azith 250 mg 3X/wk, most suppliments, currently Flagyli [7] 1500 mg x 4 days once per month

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, treatment! God is good, all the time.

If you do a search here, we did have some discussion about in utero transfer of CPni [1], 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 [26]/ME 25yrs, FMSi [27], IBSi [28], EBVi [29], Cpn, (insomnia - melatonini [30], GABA, tarazadone, triazolam, novocycloprine, allergy formula, 3 gm tryptophan), Natural HRT peri-M, NACi [5] 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 [26]/ME 32 yrs, FMSi [27], IBSi [28], EBVi [29], CMV, Cpni [1], H1, chronic insomnia, Lymes, HME, Natural HRT peri-M, NAC 3 gm, Full CAP 6-2-08, all supplementsi [4] +Sea Kelp, Chitosan Pulse 16 1-4-09 1gm Flagyli [7]/day-3 days

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 [31] by Russ Farris for a good undersanding of the role of Cpni [1] in human diseasesi [32] especially as you grow older.  David Wheldoni [33] did a review [34] of the book a couple of years ago which will give you an idea of its usefulness.

Michèle (UK) GFAi [16]: Wheldon CAPi [11] 1st May 2006. Daily Doxyi [6], Azi MWF, metroi [7] pulse. Zoo keeper for Ella, RRMSi [17], At worse EDSSi [10] 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

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Michèle (UK) GFAi [16]: Wheldon CAPi [11] 1st May 2006. Daily Doxyi [6], Azi MWF, metroi [7] pulse. Zoo keeper for Ella, RRMSi [17], At worse EDSSi [10] 9, 3 months later 7 now 6.5 Wheldon CAP 16th March 2006

"Herxheimer" is actually a very specific response to endotoxini [35]: 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 [36] (inflammatory) reactions. The thing unique to Cpni [1] is the porphyric ones. Killing Borrelia will induce endotoxin reactions (Herx) followed by cytokine reactions (inflammationi [13]). The Handbook talks about the differences in a couple of places.

http://www.cpnhelp.org/secondaryporphyria [37]

http://www.cpnhelp.org/some_more_thoughts_on_por [38]

http://www.cpnhelp.org/reactionstoCAPs [39]

 http://www.cpnhelp.org/five_ways_of_feeling_lous [21]

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 [40] & FMSi [27]. Protocol: 200mg Doxyi [6], 250mg MWF Azith, Tinii [41] 1000mg/day pulses; Vit D1000 units, Iodoral 50mg, T4 & T3

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CAPi [11] for Cpni [1] 11/04. Dx: 25yrs CFSi [40] & FMSi [27]. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii [41] 1000mg/day pulses; Vit D2000 units, T4 & T3

Thank you Jim, the light has just gone on, may explain why I have had liver enzyme elevations on doxyi [6] and roxi before tinii [41]. Due to the endotoxinsi [42] from the borrelia and the cytokinei [36] inflammationi [13] 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 [1] 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 [40]/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 [40],CPNi [1]+/Bb+(Lyme) Cholestyramine 1-2 pks @ HS for Porphyriai [18] +fattyEndotoxins HS PRN, Wheldon CAPi [11] 6/07,all supps, Doxyi [6] 200QD, Roxi 300BID, Tinidazole 500 BIDx20day Pulses, VitD3-10,000IU,Iodoral25mg,SAM-e100mgQD+B-vits, Pyruvate3.75Gm at 1PM

 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 [5] will keep me from spreading the Cpni [1] around.

Supplementsi [4] & NAC, starting CAPi [11] soon.

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SPMSi [3]< Supplementsi [4] & NACi [5], Doxyi [6] 200 mg, Azith 250 mg 3X/wk, most suppliments, currently Flagyli [7] 1500 mg x 4 days once per month

Herxheimer vs. porphyriai [18]? 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 [19]. 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 [11]: Omnicef, Minocycline, Tindamax, Roxithromycin

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DX: Borrelia, Babesia, CP, suspected Bartonella CAPi [11]: Omnicef, Minocycline, Tindamax

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 [11]: Omnicef, Minocycline, Tindamax

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DX: Borrelia, Babesia, CP, suspected Bartonella CAPi [11]: Omnicef, Minocycline, Tindamax

Jim,

I read a post of yours a day or two ago where you listed porphyriai [18] 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 [11] have more CPni [1] while others which have more herx symptoms w/o the added porphyric ones may be killing co-infectionsi [44] rather than only CPn?   Are there any other bacteria that can cause porphyrian symptoms?  

MP for 3 1/2 yrs. NACi [5] 1200 mg/2x day, myco+ I (still) want my life back! CFIDSi [26]/FMSi [27], Hashimoto's, Psoriasis, PA, IBSi [28], Secondary Addison's

When I change what I believe I change what I do

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NACi [5] 2.4g, Zithi [45] 250mg/MWF, minoi [23] 200mg, Tinii [41] 5day/1g/5 pulses, Valcyte
Iodoral 12.5mg, Supps, CFIDSi [26]/FMSi [27], Hashimoto's, Psoriasis, PA, IBSi [28], Sec Addisons

Don't believe everything you think!  

Can porphyriai [18] be caused by killing any other infectionsi [44] other than CPni [1] 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 [46] goes down, do the incidences of secondary porphyriai [20] also?

 

DX: Borrelia, Babesia, CP, suspected Bartonella CAPi [11]: Omnicef, Minocycline, Tindamax, Roxithromycin

 

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DX: Borrelia, Babesia, CP, suspected Bartonella CAPi [11]: Omnicef, Minocycline, Tindamax

 As far as I understand it:

Cpni [1] is the only organism we know of that generates secondary porphyriai [20] 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 [33]?

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 [47] 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 [11] for Cpn 11/04. Dx: 25yrs CFSi [40] & FMSi [27]. Protocol: 200mg Doxyi [6], 250mg MWF Azith, Tinii [41] 1000mg/day pulses; Vit D1000 units, Iodoral 50mg, T4 & T3

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CAPi [11] for Cpni [1] 11/04. Dx: 25yrs CFSi [40] & FMSi [27]. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii [41] 1000mg/day pulses; Vit D2000 units, T4 & T3

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 [35] (chills, fever, coldness, etc)

2.     Cytokinei [36] reaction (basically inflammationi [13], ie. pain!)

3.     Secondary Porphyriai [20] 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 [16]: Wheldon CAPi [11] 1st May 2006. Daily Doxyi [6], Azi MWF, metroi [7] pulse. Zoo keeper for Ella, RRMSi [17], At worse EDSSi [10] 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

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Michèle (UK) GFAi [16]: Wheldon CAPi [11] 1st May 2006. Daily Doxyi [6], Azi MWF, metroi [7] pulse. Zoo keeper for Ella, RRMSi [17], At worse EDSSi [10] 9, 3 months later 7 now 6.5 Wheldon CAP 16th March 2006

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.

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 [5] 1200 mg/2x day, myco+ I (still) want my life back! CFIDSi [26]/FMSi [27], Hashimoto's, Psoriasis, PA, IBSi [28], Secondary Addison's

When I change what I believe I change what I do

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NACi [5] 2.4g, Zithi [45] 250mg/MWF, minoi [23] 200mg, Tinii [41] 5day/1g/5 pulses, Valcyte
Iodoral 12.5mg, Supps, CFIDSi [26]/FMSi [27], Hashimoto's, Psoriasis, PA, IBSi [28], Sec Addisons

Don't believe everything you think!  

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 [40]/ME.

CPnPositive.BbPositive.

WheldonCAPbegan6/24/07.

NowNAC,Doxyi [6], Roxi, TiniPulse#5 day 2 in process.  

Cholestyramine at Bedtime for Phorphoria & liposacaride Endotoxini [35] Die-Off Experiences.

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Louise  CFSi [40],CPNi [1]+/Bb+(Lyme) Cholestyramine 1-2 pks @ HS for Porphyriai [18] +fattyEndotoxins HS PRN, Wheldon CAPi [11] 6/07,all supps, Doxyi [6] 200QD, Roxi 300BID, Tinidazole 500 BIDx20day Pulses, VitD3-10,000IU,Iodoral25mg,SAM-e100mgQD+B-vits, Pyruvate3.75Gm at 1PM