Cpnhelp.org

I haven't heard that DMSA has any antimicrobial properties. Some physicians believe that any heavy metal toxicity interferes with immuneⁱ function making recover from chronic stealth infectionsⁱ more difficult, so they use it for that reason with Lyme's and other infections.

You're welcome! 

CAPⁱ for Chlamydia pneumonia since 11/04. 25yrs CFSⁱ & FMSⁱ- Currently: 150mg INHⁱ, 200 Doxycycline, 500mg MWF Azithromycin, 500mg Tiniⁱ daily (Continuous protocol)

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CAPⁱ for Cpnⁱ 11/04. Dxⁱ: 25yrs CFSⁱ & FMSⁱ. Currently: 250 aithromycin mwf, doxycycline 100mg BIDⁱ, Tiniⁱ 1000mg/day pulses; Vit D2000 units, T4 & T3, 12mg Iodoral

Eureka - Some neuron in the back 40 kicked in and I found it - in Yguner's antibiotic log on THISISMS.    Thanks Guner!  Here it is below for anyone else who is interested.

Looks like those who are chelating with oral DMSA are getting some EBⁱ killing to boot in addition to the NACⁱ!  Could also help explain chelation related brain fog in some !

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

Daisy,  Steve and I are both on oral chelation therapy concurrently with the CAPⁱ.  The chelation formula "prescribed" by our doctor is a combination of several chelating agents that address a broad variety of heavy metals:  DMSA 100mg, EDTA 300mg, cilantro 300mg, chlorella 300mg, allicin 600 mg, N-acetyl L-cysteine 200mg, humifulvate 160mg, and alpha-lipoic acid 100mg.  The formula is taken at a dosage of one capsule every other day for 6 weeks, then increased to two capsules every other day until the course is finished.  The total course is a little over four months.  On the chelation days, no minerals are taken.  On the off days, minerals are supplemented.  The minerals should include zinc and copper.  Chelation therapy increases vulnerability to Candida overgrowth; caprylic acid was recommended to counter the vulnerability.  This doctor has quite a lot of experience with chelation therapy for his patients with autism, MS, Alzheimer's, mycosis fungoides, and other chronic inflammatory illnesses where elevated heavy metals are implicated.  The patients range from young children to the elderly. 

You might notice that, compared to the dosage recommended on the link, our schedule is very conservative and involves "titering up."  I appreciate the conservative approach; Eric's advisory is worthy of consideration.  Haphazard chelation can stir up metals that might settle in undesirable locations where they were not previously concentrated.  The first few weeks Steve was on chelation were hard ones, but he was starting other elements of his comprehensive treatment that cloud the picture, including doxycycline and Valtrex.  

The only symptom I can positively correlate with the chelation was some mid-back discomfort Steve experienced several days after starting.  Steve never drinks enough water due to pee-pee-paranoia.  I started him on a urinary tract support supplement containing uva ursi and marshmallow, and the discomfort evaporated immediately.  We both take it now during the chelation course.  I have never experienced the kidney discomfort, but I might not need the supplement anyway, as I always drink plenty of water.  Increased fatigue was a symptom that might correlate, but the treatment variables made positive identification impossible. 

By the way, this is not an arbitrary treatment.  We both had our urine tested after taking a provoking agent, and we were both found to have a severe heavy metal burden.  Steve is several months ahead of me on this.  After his first course, retesting showed that mercury was reduced by 45%, and the overall reduction was about 1/3.  Just like with the CAP, the careful and slow route is safer and successful.

Joyce~caregiver-advocate in Dallas for Steve J (SPMSⁱ).  CAP since August 06, antivirals, heavy metals chelation, LDNⁱ, Metanx, Lunesta, GF/CF diet, Lauricidin, oral IgGⁱ/lactoferrin/IGF-1 booster, astaxanthin, gamma oryzanol.

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Joyce~caregiver-advocate in Dallas for Steve J (SPMSⁱ).  CAPⁱ since August 06, Cpnⁱ, Mpn, B. burgdorferi, systemic candidiasis, EBVⁱ, CMV & other herpes family viral infectionsⁱ, elevated heavy metals, gluten+casein sensitivity. 

Eric - Good advice! 

I have passed on any sort of injectable or IV chelation for my husband for just that reason.  Low and slow with oral or transdermal chelation seems to be so safe they are routinely using it in toddlers with autism so that's the route we are traveling. 

Although I am very intrigued by the Chelex that Joyce and Jim are using!  Seems very mild and uses multiple gentle chelators... hmmm.... wonder if that's like a gentle laxative.

 Seriously - I appreciate your comments.  All of this is nerve wracking and my greatest fear is to do harm not good with some treatment.

Low and slow!

Daisy

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

Excellent detective work, Daisy! 

Joyce~caregiver-advocate in Dallas for Steve J (SPMSⁱ).  CAPⁱ since August 06, antivirals, heavy metals chelation, LDNⁱ, Metanx, Lunesta, GF/CF diet, Lauricidin, oral IgGⁱ/lactoferrin/IGF-1 booster, astaxanthin, gamma oryzanol.

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Joyce~caregiver-advocate in Dallas for Steve J (SPMSⁱ).  CAPⁱ since August 06, Cpnⁱ, Mpn, B. burgdorferi, systemic candidiasis, EBVⁱ, CMV & other herpes family viral infectionsⁱ, elevated heavy metals, gluten+casein sensitivity. 

Joyce,

Thanks for the post on your chelation route.  I have actually read it before in bits and pieces in multiple other threads but I appreciate your taking the time to put it together so clearly !!!  Very helpful !!! 

The info about DMSA being 'cidal for EBⁱ's could really explain a lot of what my husband has been experiencing in terms of NACⁱ flu.  Maybe it's really DMSA/NAC flu? 

Daisy 

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

Joyce,

Do you guys purchase the Chelex from the mysterious Dr. X or are you buying directly somehow?

Thanks!

Daisy

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

Daisy,  It's a proprietary formula supplement that we buy from a pharmacy that stocks it.  The doctor calls the pharmacy and puts your name on a list of patients approved to buy it.  Whether or not our doctor gets a cut is an issue I could care less about.  Besides, it's cheap.  One bottle is good for the whole 4-month course, and it only costs a little over $31.

I just read your husband's story on Thisisms.  Lord, have mercy!  The CAPⁱ is going to be especially challenging for you to witness because of all the extreme things that have happened in such a short period.

Listen, you and I are on the same track in peeling back the layers underlying vulnerability to chronic infectionsⁱ.  There is a complex web of inter-related factors.  The post I'm working on is about metallothionein underexpression in an environment of increasing exposure to heavy metals and how that leads to elevated heavy metal concentrations and glutathione depletion.  Along the way, I'll be looking into methylation problems, and possibly P-450.  My approach is not one of examining these factors separately, but as interconnected.  The areas yielding the most information are autism/DAN and CFSⁱ.  My science background is at a kindergarten level compared to yours---I graduated from college with only a minor in biology.  Do you have full access to PubMed or Lancet?

Joyce~caregiver-advocate in Dallas for Steve J (SPMSⁱ).  CAP since August 06, antivirals, heavy metals chelation, LDNⁱ, Metanx, Lunesta, GF/CF diet, Lauricidin, oral IgGⁱ/lactoferrin/IGF-1 booster, astaxanthin, gamma oryzanol.

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Joyce~caregiver-advocate in Dallas for Steve J (SPMSⁱ).  CAPⁱ since August 06, Cpnⁱ, Mpn, B. burgdorferi, systemic candidiasis, EBVⁱ, CMV & other herpes family viral infectionsⁱ, elevated heavy metals, gluten+casein sensitivity. 

Thanks for digging that up, Daisy. I stand corrected. That's straight out of the Vanderbilt patent materials. I am continually amazed at how much depth of scientific understanding emerged from Stratton et al's work.

CAPⁱ for Chlamydia pneumonia since 11/04. 25yrs CFSⁱ & FMSⁱ- Currently: 150mg INHⁱ, 200 Doxycycline, 500mg MWF Azithromycin, 500mg Tiniⁱ daily (Continuous protocol)

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CAPⁱ for Cpnⁱ 11/04. Dxⁱ: 25yrs CFSⁱ & FMSⁱ. Currently: 250 aithromycin mwf, doxycycline 100mg BIDⁱ, Tiniⁱ 1000mg/day pulses; Vit D2000 units, T4 & T3, 12mg Iodoral

WOW - great thread! I was actually independently researching this stuff, not realising it was in the patent. Many of us can't tolerate NACⁱ (or amoxicillinⁱ) so need alternative anti-EBⁱ agents.

I'd like to know, what is the physical sensation of bursting a lot of EB's at once? 

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CFSⁱ since 2001. Infected CPnⁱ Jan 2006. Dxⁱ'd March 2007. Started CAPⁱ March 2007. Currently taking: Azith 250mg MWF, 100mg doxyⁱ every other day.

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Hunter: Don't think - experiment

Bio-Chelat     http://www.heavymetalstest.com/detox.php

.... was recommended to me by someone with ME because it's claimed not to upset the balance of minerals and trace elements and is gentle enough  for children.  It doesn't look much stronger than Recup with a bit of EDTA added, has anyone tried it?

Elinor ..... from England  on CAPⁱ, doxyⁱ/roxi/tini  for ME/CFSⁱ/lyme borreliosis, positive Cpnⁱ and borrelia. Started Aug05, stopped Jan06, started again Sept 06.

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Elinor ..... from England  on CAPⁱ, doxyⁱ/roxi/tini  for ME/CFSⁱ/lyme borreliosis, positive Cpnⁱ and borrelia. Started Aug05, stopped Jan06, started again Sept 06.

Joyce,

Thanks for the tip on acquiring the Chelex.  I am on it! 

Regarding my husband's story - thanks for taking the time to read it.  You are right - it's a doozy.  I console myself that really anything is better than a grade iv brain cancer tumor.  Even this...

 I just posted/confessed over at THISISMS that I caved and quit giving the Doxyⁱ, the NACⁱ, the transdermal glutathione and haven't given the 3 day chelation that's due because of serious loss of executive function in hubby over past week.  I had to help him figure out how to put clothes on yesterday.  He can physically do it - just couldn't organize in his mind how to go about doing it.  He's become very childlike on this therapy even 3 days after I withdrew everything. 

Last night after very strong accupuncture treatment yesterday, he seemed to come back around.  This morning he couldn't remember how to use the coffee maker.   We have a 3 month MRI in less than 2 weeks and I am going to hold off on starting back up on anything until we get that new benchmark.  If he is in fact going south again and it's not the EBⁱ's and RB's dying - which I fervently am hoping, then we may be headed back for another round of Novantrone.

Yes I have full access to all med pubs.  I am completely with you on the complex web of inter-related factors.  The body is naturally strong and designed to heal itself.  Several things typically have to get out of whack to set up disease.  I will be very interested in reading your metallathionein post.  I too have spent hours wading through the autism/DAN, CFSⁱ, RA and RM websites.  Many of those groups seem to be farther along - maybe because their are more of them...  I read a research paper again last night that you and possibly others may find interesting on the idea of creating a "Fertile Field".  Let me put together some thoughts on it and I will post.

Daisy

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

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

Daisy,  Reading about your husband's illness fills me with a familiar sense of urgency that only hints at what you must be feeling.  The fact that he tested negative for Cpnⁱ is meaningless.  If he were tested again now since taking the doxycycline, he might test positive.  Even if he did not have a chronic Cpn infection, the Mpn infection is enough reason to do the CAPⁱ.  Have you thought about trying to have him treated by Drs. Stratton or Sriram?  The compassion factor might get him in.  That would be the best situation because of their familiarity with the protocol.  Plus, it would be much less "lonely" for you as a decision maker when you are confronted with symptom exacerbations.  Daisy, if you decide to have your husband continue on the protocol, there will be many times you will witness what appears to be backsliding.  These episodes will scream "progression" and scare the heck out of you especially given your husband's recent medical events.  It goes without saying that his inflammation peaks will need very careful tempering, but they are unavoidable.  Eventually, the counter-intuitive will become the intuitive, and the enduring, his and yours will pay off.  Until then, you need the best care for him and quick, knowing answers and actions.  A little more seasoned CAP professional experience and assurance might help enormously.  We will do everything we can do to support you here.

Joyce~caregiver-advocate in Dallas for Steve J (SPMSⁱ).  CAP since August 06, antivirals, heavy metals chelation, LDNⁱ, Metanx, Lunesta, GF/CF diet, Lauricidin, oral IgG/lactoferrin/IGF-1 booster, astaxanthin, gamma oryzanol.

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Joyce~caregiver-advocate in Dallas for Steve J (SPMSⁱ).  CAPⁱ since August 06, Cpnⁱ, Mpn, B. burgdorferi, systemic candidiasis, EBVⁱ, CMV & other herpes family viral infectionsⁱ, elevated heavy metals, gluten+casein sensitivity. 

Hear! Hear! Joyce...

Michele (UK) GFAⁱ: Wheldon CAP1st May 2006 . Daily Doxyⁱ, Azi MWF, Flagylⁱ at 400mg for 7 days prior to 5 day pulses at 1200mg three weeks cycle. Spokesperson for Ella, RRMSⁱ Wheldon CAP 16th March 2006

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

Thanks very much for replying Daisy. I know you have bigger things on your plate.

Also thanks very much for digging that quote out - its been a huge help to me.

I'm not sure if bursting a lot of EBⁱ's would result in necrosisⁱ. Presumably they would burst outside of cells and so not have any effect on cells?? I think its an important question, so I'm going to start a new thread in case anyone missed it here.

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CFSⁱ since 2001. Infected CPnⁱ Jan 2006. Dxⁱ'd March 2007. Started CAPⁱ March 2007. Currently taking: Azith 250mg MWF, 100mg doxyⁱ every other day.

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Hunter: Don't think - experiment

Joyce,

 I have been overwhelmed by the support that you, Sarah and others have so generously offered me.  Last night I read your post above and choked up and had to wait until today to respond.  This battle is so lonely and I feel such incredible pressure to "save" my husband because he is in zero shape to care for himself.   The possible sudden death sentence his form of MS carries weighs on me constantly.  The possiblity that he could be come a living vegetable from this also weighs on me just as hard. 

 Time is of the essence.  Safety is of the essence. 

 I think your idea to see if I can get my husband in to see Stratton is a good one.  I will see if I can track down some way to get a hold of him on Monday.  Nashville is a reasonable drive from where we live in Georgia.  I am surrounded by good doctors here but as far as I can tell - I know more about Balo's Concentric Sclerosis than any of them and definitely more about CAPⁱ and chelation.  I certainly have more vested interest in helping my helpless husband.  

 Thanks again to you and all on this site for their kindness and concern!  I am overwhelmed and humbled by it.

Daisy 

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

Daisy I'm sending you some information that might help in contacting Dr Stratton.

I understand your feelings exactly, My daughter was in the same position as your husband just over a year ago.   It is against my phylosophy to make decisions for other people, but in the situation my daughter was in it was impossible for me to stand by and do nothing.   The alternative was a death sentence.   We will be here for you in the hard times and cheering with you in the good times that are coming.

Michele (UK) GFAⁱ: Wheldon CAP1st May 2006 . Daily Doxyⁱ, Azi MWF, Flagylⁱ at 400mg for 7 days prior to 5 day pulses at 1200mg three weeks cycle. Spokesperson for Ella, RRMSⁱ Wheldon CAP 16th March 2006

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

Michelle,

 I don't know what to say but Thank you

Daisy

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