Are you talking of he Antibioticsi [7] only, or are you thinking about the cost of both the antibiotics and the supplementsi [8] we take?  

It would not be difficult to work out the antibiotics.   The supplementsi [9] might take longer.

Some people get their antibiotics from this site www.edrugnet.com.   The protocolsi [10] can be found here [11].

Michèle (UK) GFAi [12]: Wheldon CAPi [3] 1st May 2006. Daily Doxyi [13], Azi MWF, metroi [14] pulse. Zoo keeper for Ella, RRMSi [15], At worse EDSSi [16] 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

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Michèle (UK) GFAi [12]: Wheldon CAPi [3] 1st May 2006. Daily Doxyi [13], Azi MWF, metroi [14] pulse. Zoo keeper for Ella, RRMSi [15], At worse EDSSi [16] 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

I'd like to know the approximate total annual cost, including antibioticsi [7], supplementsi [8], tests, and visits to doctors or clinics. I don't need a breakdown of the costs by categories, but I would find it interesting if it were available. Russ Farris http://www.PotbellySyndrome.com [5]

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Russ Farris: russ@PotbellySyndrome.com [6] http://www.PotbellySyndrome.com [5]

Russ  -

Really like your book and have recommended it to several people.

Based on drug prices at chain pharmacies - here's your approximate range:

Doxycycline

100mg taken twice daily, Dispense 60             $ 39 to $ 46 per month

Azithromycin

250mg taken once daily M-W-F, Disp 12          $70 to $88 per month

Flagyli [14]

500 mg taken 3 times per day for 5 days       $10 per pulse

pulsed once per month

Amoxicillini [18]

500mg taken 2 times per day                        $ 21 to 26 per month

 Treatment cost for one year (sans labs, supplements, endotoxini [19], porphyriai [20] measures)  $ 1356 to $ 2160 per year at retail pharmacy prices.

Employer health plans would of course pay lower than these retail prices.

 ^{Daisy - Husband on CAPi [3] 5/07.   Roxyi [21], Diflucan round three 4-4, Rifampin, Bactrim DS, Mepron 4-6, Prednisone, Novantrone, Doxy, Azithromycin, Flagyl, Minoi [22]}

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Daisy - Husband on CAPi [3] 5/07.  "When Going Thru Hell, Just Keep Going", Winston Churchill

Russ, We're all big fans of your book and it's a pleasure to see you here. (I discovered the book shortly before I discovered I had cpni [1], and was especially appreciative of the chapter for professionals/scientists.  I know few authors would have the good sense to preface a chapter with 'you don't have to read this, it's pretty detailed stuff'.  Thanks for being honest with your readers.)

Actually, you do need a pretty comprehensive breakdown of costs, unless this question is just for curiosity's sake, which I sort of doubt.  The reason is, there's 'retail' and there's 'other'. It's kind of a worst case vs. best case thing. For those of us with great insurance, the cost of the meds is thirty dollars a month. For those with no insurance, or those who have to buy antibioticsi [7] through the internet, costs escalate dramatically. 

I'm on the ridiculously low end, but I don't have to fly to see a doctor and I have Blue Cross medical insurance.  Out of pocket, I spend around  thirty dollars a month on vitaminsi [9] and supplementsi [8], thirty on meds and ten a month on doctor visits.  It sure beats the $1500/month Copaxone would have cost and the $175 every three months for the neuroi [23] visits.  Others will be by shortly to give you the high end numbers, I'm sure.

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

Costco.com is likely the best place to check prices, if you want a basic figure for how much the medicines really cost, minus retail gouging or overseas ordering overhead, and with good quality sources. They charge me about $5 for 30 metronidazolei [14] pills, about $3/pill for 250mg azithromycin, and about $0.60/pill for 100mg minocycline. Their exact prices are online.

As for how long treatment takes: how long is a piece of string?

Re how long it takes to eradicate Cpni [1]?   Dr Stratton suggests 3 to 5 years.   Still a lot less expensive and of shorter duration than continuous treatment with some of these expensive MS drugs...

Michèle (UK) GFAi [12]: Wheldon CAPi [3] 1st May 2006. Daily Doxyi [13], Azi MWF, metroi [14] pulse. Zoo keeper for Ella, RRMSi [15], At worse EDSSi [16] 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

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Michèle (UK) GFAi [12]: Wheldon CAPi [3] 1st May 2006. Daily Doxyi [13], Azi MWF, metroi [14] pulse. Zoo keeper for Ella, RRMSi [15], At worse EDSSi [16] 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

Russ,  What are your plans for overcoming the anti-antibiotic hysteria out there? 

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi [24]).  CAPi [3] since August 06, Cpni [1], Mpn, B. burgdorferi, systemic candidiasis, EBVi [25], CMV & other herpes family viral infectionsi [2], elevated heavy metals, gluten+casein sensitivity. 

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Joyce~caregiver-advocate in Dallas for Steve J (SPMSi [24]).  CAPi [3] since August 06, Cpni [1], Mpn, B. burgdorferi, systemic candidiasis, EBVi [25], CMV & other herpes family viral infectionsi [2], elevated heavy metals, gluten+casein sensitivity. 

Thanks for the kind words about the book. I gave up a lot of fishing trips to finish it. :-) You are right that it is not just curiosity that prompted my question. I need the information because I'm shifting my strategy in promoting the potbelly syndrome idea. I've been writing to doctors and editors until I'm blue in the face, without making much headway. I've decided to approach the people who pay for healthcare; businesses and business associations. In the U.S. we pay roughly $7,000.00 per year per person for healthcare. That also happens to be the amount that employers spend per employee. In both cases the money is distributed very unevenly, with large parts of it spent on CPNi [1]-related illnesses. No improvements in transparency, evidence based medicine, or information technology will be able to reduce those costs very much. The only way to dramatically reduce the amount we spend on healthcare is to get insurers/employers to start taking chronic infectionsi [2] seriously--starting with CPN. Russ Farris http://www.PotbellySyndrome.com [5]

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Russ Farris: russ@PotbellySyndrome.com [6] http://www.PotbellySyndrome.com [5]

Thanks for the kind words and for the figures. Even if we rounded your costs up to $3,000.00 per year, it is still cheap compared to treating a person whose chronic infection has erupted into an acute illness such as heart diseasei [26], diabetes, or MSi [27]. Plus, there is a reasonable chance that they won't have to spend $3,000.00 per year forever. Once insurers/employers get an idea how much CPNi [1] is costing them, I think we will see some serious money allocated to research. The Giant HMO that I poke fun at in The Potbelly Syndrome has probably spent a hundred thousand dollars on me in the last ten years, and it is likely to spend a lot more before I have the good grace to die and let it off of the hook. Russ Farris http://www.PotbellySyndrome.com [5]

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Russ Farris: russ@PotbellySyndrome.com [6] http://www.PotbellySyndrome.com [5]

I'll check Costco's website. Thanks. Russ Farris http://www.PotbellySyndrome.com [5]

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Russ Farris: russ@PotbellySyndrome.com [6] http://www.PotbellySyndrome.com [5]

Thanks for relaying Dr. Stratton's estimate. Three to five years at $3,000.00 per year would be a pretty good deal, especially if you were able to work during that time. If my Giant HMO had spent $15,000.00 on me years ago, I suspect that I would have been much spryer since then, and my Giant HMO would be $85,000.00 richer today. Russ Farris http://www.PotbellySyndrome.com [5]

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Russ Farris: russ@PotbellySyndrome.com [6] http://www.PotbellySyndrome.com [5]

I don't have a good answer for that question. I read Dr. Stratton's paper, written several years ago, entitled Dead Bugs Don't Mutate. Any suggestions? Russ Farris http://www.PotbellySyndrome.com [5]

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Russ Farris: russ@PotbellySyndrome.com [6] http://www.PotbellySyndrome.com [5]

Russ, A word, please, on site usage.  

After reading your several responses, not having addressed them to anyone, I think I figured out what you were doing.  I might be wrong, but I think YOU think, by 'replying' to a specific post, your response will attach itself to that post?  Actually, responses post on the site chronologically, by time submitted.

I read your replies, then realized they were addressed to each of us who posted, in order.  It will be less confusing to the reader (especially those with major brain fog) if you preface your posts with the name of the poster you're actually directing your comment to.  Now, stepping off one soapbox onto another...

I think hammering the insurance providers is the most profound method of getting the word out that I could ever imagine.  What can we do to help?  Oh, and if you decide to follow that one up, it should probably have its own individual thread.  I have a feeling it could generate huge response.

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

Russ,  That paper is one of my favorite tools to combat the bias against antibiotics too.  When conversing on the subject of abxi [7] with people who mention antibiotics like they were the vilest poison on earth, I generally ask them what type of treatment they would want if they had an infected wound, TB, infection with a flesh-eating bacteria, or syphilis.  Then I agree with them that antibiotics are overprescribed and overused, thereby contributing to the development of bacterial resistance.  From there I go on to relate that another significant part of the problem is in underprescribing antibiotics---too low a dose, too short a course, bacteriostatic instead of bacteriocidal agents...leaving the more resistant bacteria to thrive.  Patients often make matters worse by not finishing the entire prescription.  That's when I start referring to the ideas in Dr. Stratton's paper and to the strategies in a well planned CAPi [3].  The words "Dead Bugs Don't Mutate" are a perfect summary.

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi [24]).  CAP since August 06, Cpni [1], Mpn, B. burgdorferi, systemic candidiasis, EBVi [25], CMV & other herpes family viral infectionsi [2], elevated heavy metals, gluten+casein sensitivity. 

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Joyce~caregiver-advocate in Dallas for Steve J (SPMSi [24]).  CAPi [3] since August 06, Cpni [1], Mpn, B. burgdorferi, systemic candidiasis, EBVi [25], CMV & other herpes family viral infectionsi [2], elevated heavy metals, gluten+casein sensitivity. 

Russ/MacK

While it may be true that hammering the insurance companies might help; I am not so sure.  LTD insurers & country's own disability benefits are very hard to get approved.  Insurers are still running around denying coverage & leaving the sick & disabled to fend for themselves during the long road to PROVE they are in fact sick.  At this time, most doctors don't know squat about CPni [1].

Having said that, we should press on.  This is an upward battle & immediate rewards will not be realized.  We know that!

CFIDSi [29]/ME 26yrs, FMSi [30], IBSi [31], EBVi [25], CMV, Cpn, chronic insomnia, Lymes, HME, Natural HRT peri-M, NACi [32] 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#9 750mg 5.5 day, 4-25-8

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CFIDSi [29]/ME 32 yrs, FMSi [30], IBSi [31], EBVi [25], CMV, Cpni [1], chronic insomnia, Lymes, HME, Natural HRT peri-M, NACi [32] 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

I KNEW this should have its own topic. Insurers are only about the money. They play the odds and they like to win. Winning for them is least outgo for maximum income. If insurance companies can be convinced cpni [1] is the likely culprit in so-called autoimmune diseasesi [33], they will fund research. If they can be convinced they only have to pay a thousand dollars a year for a few years to cure my MSi [27], instead of more than TWENTY thousand a year to (maybe) hold my MS in abeyance for the rest of my life, but never cure it, they're going to be VERY interested. An all out self-interest war between the insurance companies and big pharma would be phenomenal to watch.

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

Joyce,thanks for this suggestion.  Great approach as I been asked about aren't you concerned about resistance all to often. 

Louise

CFSi [34]/ME.CPnPositive.BbPositive.WheldonCAPbegan6/24/07. NowNAC,Doxyi [13], Roxi, Full TiniPulse#5 pulse day 10 in process. Ended2/3/08. Cholestyramine at BedtimeforPhorphoria&liposacarideEndotoxinDie-OffExperiences.

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Louise-CFSi [34], CPN+/Bb+ Wheldon CAPi [3] 6/07, Cholestyramine1-2pksHSforPorphoria& Endotoxinsi [35], Doxy100daily,Roxi300BID,Tini500mgBIDpulses,VitD3-4000IU,MagnascentIodine,{S.O.D.3/QD[KAL Brand],+Pyruvate3.75G+SAM-eForEnergy}

Thanks, MacKintosh, for the heads up about site usage. I thought I was being helpful by clicking the Reply button. I'm taking your advice and starting a new thread. Russ Farris russ@PotbellySyndrome.com [6] http://www.PotbellySyndrome.com [5]

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Russ Farris: russ@PotbellySyndrome.com [6] http://www.PotbellySyndrome.com [5]

You're right, Ruthless1, "This is an upward battle & immediate rewards will not be realized." I've been fighting this battle for ten years and I haven't persuaded the doctors at my Giant HMO to take CPNi [1] seriously yet. I think I need to change my tactics. Russ Farris russ@PotbellySyndrome.com [6] http://www.PotbellySyndrome.com [5]

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Russ Farris: russ@PotbellySyndrome.com [6] http://www.PotbellySyndrome.com [5]

Russ, You could always try Michael Moore for a documentary approach Louise

CFSi [34]/ME.CPnPositive.BbPositive.WheldonCAPbegan6/24/07. NowNAC,Doxyi [13], Roxi, Full TiniPulse#5 pulse cycle day 10 today. Cholestyramine at BedtimeforPhorphoria&liposacarideEndotoxinDie-OffExperiences.

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Louise-CFSi [34], CPN+/Bb+ Wheldon CAPi [3] 6/07, Cholestyramine1-2pksHSforPorphoria& Endotoxinsi [35], Doxy100daily,Roxi300BID,Tini500mgBIDpulses,VitD3-4000IU,MagnascentIodine,{S.O.D.3/QD[KAL Brand],+Pyruvate3.75G+SAM-eForEnergy}

Hi Louise--Good idea. I will write to Michael Moore, but I will do so with great misgivings. He subordinates truth to his political views. Lots of people do that, but few do it so forcefully. It's hard to predict what he will do with any subject. Russ Farris russ@PotbellySyndrome.com [6] http://www.PotbellySyndrome.com [5]

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Russ Farris: russ@PotbellySyndrome.com [6] http://www.PotbellySyndrome.com [5]

Russ & everybody, some good ideas.

The attack on insurers must be relentless.  Perhaps it would be easier to convert the patient disability advocates & start from that angle?

I agree that it could go any which way with Michael Moore.  I wonder about the respect it would garner coming from his cutting room.

CFIDSi [29]/ME 26yrs, FMSi [30], IBSi [31], EBVi [25], CMV, Cpni [1], chronic insomnia, Lymes, HME, Natural HRT peri-M, NACi [32] 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#9 750mg 5.5 day, 4-25-8

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CFIDSi [29]/ME 32 yrs, FMSi [30], IBSi [31], EBVi [25], CMV, Cpni [1], chronic insomnia, Lymes, HME, Natural HRT peri-M, NACi [32] 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

 Okay Norman, I'll give: how long is a piece of string? I know, I know, long enough to hang...

CAPi [3] for Cpni [1] 11/04. Dx: 25yrs CFSi [34] & FMSi [30]. Protocol: 200mg Doxyi [13], 300mg Roxithromycin, Tinii [36] 1000mg/day pulses; Vit D1000 units, Iodoral 50mg, T4 & T3

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CAPi [3] for Cpni [1] 11/04. Dx: 25yrs CFSi [34] & FMSi [30]. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii [36] 1000mg/day pulses; Vit D2000 units, T4 & T3

Hi Ruthless1. I had never heard the term "disability advocates" before. Googling the term and limiting the responses to .org websites gave me 30,000+ hits. That looks like a fertile field to plow. ---Disability advocates will have agendas of their own, but their opinions about the causes of illness are not likely to be set concrete. Russ Farris russ@PotbellySyndrome.com [6] http://www.PotbellySyndrome.com [5]

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Russ Farris: russ@PotbellySyndrome.com [6] http://www.PotbellySyndrome.com [5]