Reactions to CAP Treatment: That "Kissed by a Dementor" kind of feeling*

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Bacterial Endotoxini reactions, Cytokinei (immunei) reactions and inflammationi<

These are often casually. but inaccurately, referred to as “herx” reactions, or scientifically as “herxheimer-like” alluding to the Jarisch-Herxheimer reaction to bacterial toxins specifically from syphilis. All gram-negative bacteria, of which Cpni is one, have contain Lipopolysaccharidei endotoxinsi as well as HSPi's (heat shock proteins) which are released as a matter of course during infection and are in part responsible for the on-going symptoms of the infection.

When these bacterial are killed en masse during treatment, they release relatively large amounts of endotoxin, causing significant symptoms especially during initial phases of treatment, as well as when an additional antibiotic agent is added to the protocol. If the amount of endotoxin exceeds the body's ability to get rid of it, these toxic effects can be life threatening. But even in less threatening amounts, the endotoxins and the resulting reactions can cause oxidative stress and damage to body organs.

Wheldon believes the immediate reactions, characterized by shivering, influenzal symptoms and general malaise, are indicative of the endotoxin itself. Dorlands Medical Dictionary adds that the condition is a short term immunological reaction which causes fever, chills, muscle pain, headaches, and skin lesions.

Dr. Powell identifies chronic signals of endotoxin in constantly feeling cold especially in extremities or body core, feeling that you can't warm up, etc.

The recommended supplementsi are crucial to help the body counter endotoxin reactions, and the oxidative damage they can cause body tissues and organs. 

Cytokine reaction (immune response)-

The endotoxin stimulates a powerful cytokine reaction by the immune system, which activates macrophages and brings with it inflammation. Next the compliment cascade, and release of histamine and more inflammation. Next the coagulation cascade and more inflammation, along with lowered blood pressure. It is likely that widespread muscle, joint and connective tissue pain, dis-coordination, deep fatigue, brain fog, bowel and other organ distress, nausea, are an indication of the endotoxin-cytokine cascade when abxi treatment is initiated.

"LPSi is an incredibly potent initiator of immune cascades...you really don't need much to cause a lot of harm... We know that once the endotoxin signaling process has begun, the damage done by endotoxin is actually damage done by the immune system. Cytokinesi released in high concentrations produce overwhelming amounts of ROSi and RNS, leading to free radical production and catastrophic tissue damage. Equally overwhelming amounts of antioxidants are required in sustained concentrations to both prevent and combat this..." http://www.acnem.org/journal/24-1_april_2005/endotoxin.htm#15

The main signal of cytokine reaction is inflammation: pain, swelling, brain fog, pain, pain, pain.

As noted, the supplementsi are crucial here as well for preventing the damage of our runaway immune system. Some patients may require anti-inflammatory medications to manage these cytokine cascades.

 

*Thanks to Ron for the phrase, "That "Kissed by a Dementor" kind of feeling." 

Comments

My wife has Reynauld's disease (causes arteries to the hands to spasm and shuts down blood to the hands) which onset shortly after her initial bout with CF. A very good physician saved her hands with a nerve block and put her on L-arginine (along with norvasc) which he says causes the inner lining of the arteries to produce NO. This may be a good addition to the supplement protocol.  We're new here and will start the CAPi soon-after she completes a body cleansing protocol (to allow her to better deal with the porphoria) for the liver and gut. We've been dealing with this for 15 years and as a RN I see the clinical similarities. In the early days benadryl would relieve most of her pain( but it made her sleepy) this histamine release would explain its efficacy.

Wife with CFSi/FM/REYNAULD'S 15YRS Lab positive for CPni/HHV7&11/EBVi. Son 17yo with FM 3yrs- both on all supplementsi since 8/08 Started CAPs per Strattons modification (clindy/pyruvate/doxyi) started 11/17/08

Hello and Welcome! A few thoughts on Raynaud's...

 

 

1.  I wasn't diagnosed with it until AFTER starting the CAPi.

 

 

 

2. I recently treated it with L-arginine/no flush niacin">i. It worked. But then, developed shingles, so had to stop! So far, it hasn't returned as severely as before. But my doctor warns me that the majority of his patients on L-arginine develop shingles, too.

 

 

I certainly wish your wife the best. And, it may be wise to consider that most people's symptoms increase, initially, when starting CAP.

 

 

--Minai

 

 

RRMSi, diagnosed 2/04. NACi 4/06. Started Wheldon/Stratton regime 8/30/06. Doxycycline, 8/06, Azith, 10/06. Switched to Roxithromycin 11/06. Psuedo relapse/die-off with hospitalization 1/07. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY Restarted CAP with NAC and Doxy 2/07. LDNi 4/07. Stopped NAC, started Roxi, again 5/07. Now on full doses of Doxy and Roxi. NAC, again, 7/07. 1st Tinidazole Pulse, 8/11/07. USA

Thanks for bumping this article up Jim K....

It reminds me that I guess I need to take more antioxidantsi even though I figured I had that part of the program all wrapped up.

I have been having temperature issues, super cold extremities, low body temps, very hard to warm up & even harder to keep warm.  This, of course, with the Troll Queen turettes episodes & malaise are pretty much "normal" as porphyriai go.

I have found the glucose to be of more help for me.  I tried the charcoal & it didn't seem to work.  I have also done vitamin C flushes & they are not my favourite as I don't drink juice, just water.   Perhaps I need to try the charcoal again, Lord knows I bought enough of it on IHerb 3/1 deal.

Good luck for lwbell, so glad you are here with us as this site is critical for support & feedback.

Blessings

Ruth

CFIDSi/ME 25yrs, FMSi, IBSi, EBVi, Cpni, (insomnia - melatonin">i, GABA, tarazadone, temazepam, novocyclopine, allergy formula, 2 gm tryptophan), Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, 8-21-07 1st pulse 1 X 250 mg Metroi<

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<

 I should mention that Trental, used for peripheral circulation problems, is also used by some of the doctors treating Cpni to counter endotoxini effects specifically.

For those who have little help from charcoal, it may be worth trying Questran (cholestyramine) which binds more specifically to fats and can be taken with meals unlike charcoal. It's a prescription. Like charcoal it can produce constipation. 

CAPi for Chlamydia pneumonia since 11/04. 25yrs CFSi & FMSi- Currently: 200 Doxycycline, 500mg MWF Azithromycin, Tinii pulses.

 

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

I am also going to look into glucose as charcoal is not working for me either and I am taking up juice as I have done c flush with water like Ruth and this was not my favorite either. That trental drug sounds like it may help me as I am again up with leg pain. On Wheldon protocol for MSi since April, 2006.  doxyi 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyli Pulses start end Sept., LDNi 2004

5oo mgs Ceftin 2 x/day, 500 mgs Zithromax, 500 mgs 2 x tinii pulses,100 mg diflucan, 4.5 ldni; Wheldon protocol for MSi April, 2006 to May 2008. 2008 MRI shows NO NEW DISEASE ACTIVITY, 2012 MRI no new disease activity.

 I haven't even tried charcoal since I didn't fancy using stuff that I used for drawing in art classes or for keeping the water sweet in my water butt!

I use chlorella - the japanese kind - and find that it works very well for the purpose discussed here. I once used the Chinese kind and it didn't work as well as the Japanese one.

New Forest, UK. Progressive MSi dxi 12/06 LDNi 3/07 CAPi 6/07: Wheldon

speedbird

Chlorella has the added advantage of not making you constipated. But for those who can take it in sufficient quantities activated charcoal which acts like a sponge has a proven track record. It is used in medical and veterinary circles to absorb toxic material that might have been ingested.

Michele (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

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

 Can someone post the references for chlorella absorbing toxic's? I have taken it in varying quantities and can't say for sure whether it does anything for porphyrins, although others here swear by it. I'd like to see more about what it does and doesn't absorb.

CAPi for Chlamydia pneumonia since 11/04. 25yrs CFSi & FMSi- Currently: 200 Doxycycline, 500mg MWF Azithromycin, Tinii pulses.

 

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

Bump for all the new people reading here lately. 

Daisy - Husband on CAPi 5/07.   Roxyi, Diflucan round three 4-4, Rifampin, Bactrim DS, Mepron 4-6, Prednisone, Novantrone, Doxyi, Azithromycin, Flagyli, Minoi<

Daisy - Husband on CAPi 5/07.  Husband died from Acute Myelogenous Leukemia Secondary to the Infusion of Novantrone.  Ie - the treatment with the conventional MSi drugs killed him.

Daisy on her own CAP 11/2012. 

Good Job,

well I have just finished up my 5.5 day pulse of 750 mg a day of Flagyl/metroi.  The "toxic talk" snuck up on me yesterday!  I was a little irritable when we went to Costco, my spouse loves to meander around & take forever, I turn around & he is gone, with the cart & I am standing with the grocerys in my arms!

Then, something happened with Doug's work & then, the Troll Queen reared her ugly head.  She decided to grace me with a little anger toxic talk!  Of course, my spouse was, ya honey, hmmm, ya, ah ha.  Then, the air came out of me, I walked to the kitchen & downed a glass of water with 2 envelopes of Emergen-C

Haaaaaaa, that's better!  For the most part, the Chitosan, C & all my supplementsi were handling things pretty good, just needed to throw in some more C's along with a little glucose.  Better!

 

CFIDSi/ME 25yrs, FMSi, IBSi, EBVi, Cpni, (insomnia - melatonin">i, 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

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<

If you are thinking about LPSi / Endotoxini / MSi / Blood Brain Barrier / NF-KB, you might want to read both of these:

Dr. Felts et al. 2005 Inflammation and primary demyelination induced by the intraspinal injection of lipopolysaccharide<

Dr. Bannerman et al. 2003 Mechanisms of bacterial lipopolysaccharide-induced endothelial apoptosis<

 

Jim and Louise, Thanks.  I'm going to be working on more of this.  I still don't understand the taxology thing, but I guess that's ok.  I want to encourage folks to list the lead doctor's name and year of publication when posting.  Sometimes links disappear, however, it's worlds easier to track down reasearch when you have a last name and a date.  Ken

In pursuit of ABX<

Don't Allow What You Know To Get In The Way Of What Might Be

Jim, Seems that Ken is on a roll here and beginning to produce some really good research findings.

Any way you could start a bookpage for his findings that would keep them findable easily?  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
  • <
There is that thread of "user recommended pages" or something like that in the forums to keep notable things like this find-able.

 

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

Hello and welcome melsells. May I recommend to you that you start your own post so your question is more visible to the folks here. There are many helpful folks here that have the knowledge you seek. I don't know if there is a doctor in Miami, FL.

By the way moderators, etc. The link in original post is no longer viable.

http://www.acnem.org/journal/24-1_april_2005/endotoxin.htm#15<

 

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. 

Hello,

I am new to the site. I am here because i believe i am infected with this bacteria.

I am going on ten months now of hard core asthmai, along with sinusitusi and allergies from hell. I never had asthma a day in my life prior.

I have not been tested but have been to 3 different docters... all three had conflicting opinions .. non of them mentioned cpni, but one did think i had an infection and put me on a round of antibiatics that seamed to help at first, but as you can imagine, it came back stronger than ever.

Because i dont sleep at night due to my all night episodes, I have done extensive reseach on the web about this bacteria and believe I have it.

Does anyone know of a Doctor in Miami Fl. that will test/ treat me for this? 

Thanks!

 

Thank you!

 


Did you find a doc to help you? I am in the keys and need a doctor ... if you know anyone in Miami, be great !!

Thanks so much

 

send to my in box if you know someone

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