I had the opposite experience; I have lost about 12 pounds in the (essentially) one year that I have been on the protocol.  You have to keep in mind that when I started the CAPi, I was already well into a program of diet and exercise (which I have continued) that had already allowed me to lose 10 pounds, so I don't know how much credit (or blame) can be attributed to the CAP.

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CAPi for M.S. since 8/2007. Currently: 100 mg Dox. (2 x day), 250 mg Zithi (3 x week).  Sixteenth pulse metronidazolei + INHi completed 12/20/2008.

I gained about ten pounds. That being said, I made a pointed effort not to change anything about my diet/exercise while doing the protocol, just to be sure it was the protocol that cured me and nothing else. Lately, I've noticed a marked change in my eating habits and choices. I like sugar less, suddenly. I don't crave cream sauces or cheese like I used to. I want fruit. I've NEVER wanted fruit. Go figure. I've lost six pounds without exercising. Maybe the cpni are giving up and heading out to Vegas, or Mars, for all I care. I think this might be the last phase of cpn die-off for me. It feels good!

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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

what about the weight gain.... I know some of the MSers have lost weight.  Some of us MEers have gained weight.  When I was spiralling downward quickly in late 05 after having diarrhea for 4 months or so, I quickly put on 15 lbs, just like that!

Altogether now, I have put on 30 lbs in the past 2 years- 15 of which have been since the protocol.  Can I blame the antibiotics conclusively..no.  I have had to alter my diet by adding glucose & more complex carbs which I had stayed from in the prior 10 years or so because of these spikes in weight. 

I don't think my body knows what to do with excess anymore.  Throw glucose at it.. or complex carbs or???  My body is in fat storage mode & I hope I can change that when the abxi is done after the CPni critters are all dead & gone...

peace

r

 

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CFIDSi/ME 32 yrs, FMSi, IBSi, EBVi, CMV, Cpni, H1, chronic insomnia, Lymes, HME, Natural HRT peri-M, NAC 3 gm, Full CAP 6-2-08, all supplementsi +Sea Kelp, Chitosan Pulse 16 1-4-09 1gm Flagyli/day-3 days

I guess it is not the medicines but the illness the one that changes the weight.  I had an "athletic" figure during 40 years and boom, 30 pounds extra after loosing 10 first - have passed from size 1 and 3, to 7 and 9...lol, its crazy!  Yes I have had antibioticsi but this weight problem might be more from the thyroid affected and the steroids I also had!  I don't think the antibiotics do this - I had them many times before in my life and never, never gained a gram.  The gettting back to your weight is a real good indicator that you are on your way! Good job Mack!!!

Hey, I've seen many questions about the eating habits and I have a rule, your body knows more than you.  I read this one post - I forgot the name-  who eats  tons of peanut butter when having the flagil pulses - I will say, go ahead, keep on doing it; it is probably what you need.

Of course I consider that excess is wrong.  Why having all this carbs and so much glucose?  I would change that for protein and fruits!

 I think the antibiotics make you feel swelling and heavy!  But you'll be fine "Blackfoot" that is the important thing!!

God bless!

Maria 

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God bless you all.

MariaPatri - living in a rollercoaster! (In Orlando, Fl).

Thyroiditis, sinus infection, heart, muscles and joints. 

I think hormones are much more a culprit to blame on gains or losses than antibioticsi and is explained in "The Potbelly Syndrome" book.

I've gained a moderate 3 lbs which I chalk up to eating more carbs as I am since on the CAPi, due to eating more of the secondary porphyrian diet foods such as glucose and more complex carb foods than I used to since higher carb diet causes more water to be retained. I don't think it's fat.

I was on very small amounts of antibiotics for nearly 4 yrs before beginning the CAP and hadn't gained or lost anything really but when my body is at it's worst and I feel stressed or ill I gain weight.

I've always been able to sleep weight away as I read somewhere this was studied. I think it just proves how cortisol triggers weight gain and stressors which increase cortisol which triggers insulin resistance will increase weight while decreased stress and sleep will help you lose weight.

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NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 5day/1g/5 pulses, Valcyte
Iodoral 12.5mg, Supps, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Sec Addisons

Don't believe everything you think!  

I'm losing -- lots.

I am eating only carbs now (lots of potatoes, bread/crackers throughout the day and pasta every supper, which is a radical departure from my regular intake) and munching at least a whole pack of dextrosal tabs a day, most days when I am not in the office I spend in bed or tucked in a deck lounger -- all I seem to be able to do is sleep. Yet I've lost 20lbs since this started in May. I am doing so little energetically and I'm eating all carbs and sugar that I should be packing on the pounds but they keep disappearing. I got up today after almost 5 solid days of sleep/rest and none of my summer dresses fit me anymore.

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Corinna | GFAi. Wheldon Protocol: 4–8/08. Can't kill the yeast.

Good question. I am a very skinny guy so i consider weight gaining as a positive sign and improvement in my health (otherwise i cant gain...). However when i started CAPi i lost weight (due to die off and porph.) but i do think that after all when i will be better i will start gaining again to get back to the original weight or even more than before.

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doxy200, azith250, NACi 2400, Metroi 1250(once a month), supplementsi, vitaminsi.

 Question on weight...

       When I first started the capi, I too noticed weight loss. I agree with Reene that hormones are the culprit of the weight fluctuations. It wasn't  until I started the Azith. that my whole body started to feel puffy. This protocol puts alot of extra stress on the body as it fights off the diffrent bugs. 

       I have to remember the statement; "To expect the unexpected". or I would be a freaked out mess. This cap is not easy but remember how you felt before you started.   

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started Wheldon capi 4/21/08 for Cpni, CMV, EBVi, CFSi. Currently on: all supplementsi,Doxy200, added Azith.250mgs M/W/F on 6/30/08. Naci up to 1200mgs.as tol.Vit.B12 injections daily, cholest. prn. Start Tinii. in Jan. if all goes well.

On the CAPi, Steve lost 30+ pounds, but he is now gaining weight.  I gained 20+ pounds, but I am now losing weight.  In our cases, I think this is all about inflammationi, cortisol, an individual's ability to produce cortisol, and changing degrees of malabsorption, due not only to the effects of the CAP, but also due to the infected state of health.

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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. 

Sorry editted post, I'm going to PM this so as not to derail the thread...

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Corinna | GFAi. Wheldon Protocol: 4–8/08. Can't kill the yeast.

Corinna, For myself I have experienced a decreased appetite with the addition of the abxi therapy. 

I am eating more carbs although this is minimal compared to folks here that are using lots of glucose.  I continued to eat protein with each meal as I have for most of my life.  I am able to eat more carb with less intense energy sink holes resulting as in the past and I can be saved from "feeling awful by the small amount of glucose 5 - 7 gms in the tablets and our US smarties. I use them sparingly, knowing quite well that I could pack on the pound and frankly don't need to go there, I have work hard not to for many years. 

I am very clear that porphoria is one of my main energy sinkholes, pain components and brain fogging elements.   Recently I have become more regular with energy and methylation supplementsi some I have used in the past and some newer to me, adding several that seem to be bringing up my energy to a more consistent level throughout the day.

I have a tender stomach I guess since childhood.  There have been years and years that it has been no problem however, I may have some variants of porphoria that I may have learned to deal with these facts unknown.  I was on a strict gluten free diet for about 10 years in the 80' - 90's.  I am gluten avoidant for the most part but not completely these day.  I was on anti candida regimen most of that time to.  I eat plain and simple.

 Recently I had a saliva test that showed anti-gliadin antibody even thought the blood work prior has been negative as recently as last winter.  Past GI xray studies (10 years ago) were negative during the time of total abstinance about 10 year ago and blood negative too, I did not have intesinal biopsy ever.  On history by a gastroenterologist that was Celiac Friendly I was confirmed and told to teach my children well about this.

Recently I have done reading around porphoria and found that there is a form of it that is very late onset in the late 4th to 5th decade on life.  Actually this is the age frame that I am and this time is when my CFSi really kicked up big time. 

Corinna, was your weight before your weight loss creeping upward from you weight in your early adult weight?  I am holding at levels that I was in in my mid 20's which is actually considered my desired weight on analysis.

You might be tested for adult onset diabetes beyond insulin resistance variety, it does happen and would be wise to ruleout.   

Sorry to hear you are feeling so poorly these days, the early days of CAPi were very hard on me too and I was down much more than standing on my feet for months.

Louise

 

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

thanks for interesting responses.  perhaps my age (46) and inability to do any significant exercise could be part of it.  i hope i am like cypriane and this goes into reverse a little.  before i went on holiday i (naturally) went very 'healthy' foodwise - and didn't fancy anything that wasn't light and wholesome, though i didn't really  have the energy to cook that kind of food.  back on holiday its a bit back to normality.

anyway, lets see how it goes, still early days. 

by the way, i haven't blogged lately - but i think i am starting to feel a little better .... will do when i have more time .... 

 

 

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M.E./CFSi 20 years, intermittent.  Wheldon Protocol - Started NACi and supplementsi Sept 2007. Doxyi and Roxy full dose by Dec '07.  First Flagyli pulse January 2008.

why is my reply in italics?!  is it the 'new look'?

 

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M.E./CFSi 20 years, intermittent.  Wheldon Protocol - Started NACi and supplementsi Sept 2007. Doxyi and Roxy full dose by Dec '07.  First Flagyli pulse January 2008.

Blackfoot,

I think what many of us are saying is that although we can't exercise or are too sick to at times, the weight is more affected by other factors such as hormonal and you can actually gain weight by exercising more under stress.

I always found that to be the case for me and a good nap works much better for me for weight control than the gym and now the experts explain why:

Sleep More, Weigh Less: the link Between Sleep and Weight Loss

Sleep More, Lose Weight

You Snooze, You Lose

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NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 5day/1g/5 pulses, Valcyte
Iodoral 12.5mg, Supps, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Sec Addisons

Don't believe everything you think!  

I'd read chronic infection and stress can slow the thyroid and, of course, a sluggish thyroid can cause weight gain. Supposedly during infection the thyroid slows in order to slow you and your metabolism down to allow your body to rest and heal. Makes sense to me since I was diagnosed hypothyroid not too long after the incident when I think I became infected with Cpni. You can have "normal" thyroid test results and still have a sluggish thyroid if it's at the slow end of normal.  You'd have to compare it with your thyroid tests from before the infection and/or weight gain if you have earlier tests.

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GFAi - asthmai, sinusitis/rhinitis, tendonitis, low back pain, hypothyroid. Started azi 1000mg/week Jan 9, '08. Increased azi to 250mg/day, added 20mg Benicar daily Mar 13, '08. First Flagyli pulse started June 30, '08. Added Doxyi 200mg/day Aug 16.

It is not the new look.

It happens because Rennie's signature block has a quotation in italics that appears to get cut off and so the code to shut the italics off doesn't get picked up and every post thereafter in the thread is in italics.

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CAPi for M.S. since 8/2007. Currently: 100 mg Dox. (2 x day), 250 mg Zithi (3 x week).  Sixteenth pulse metronidazolei + INHi completed 12/20/2008.

My kind of weight loss! Great links.

Today I woke up from my nap a pound lighter. I figure I am losing 2-3 lbs per week. My appetite is good and an example of my diet is thus: yesterday I had granola w/yogurt, A&W Whistle dog (a fried hotdog on a toasted bun with bacon, cheese and relish), Ben&Jerry's chocolate cookie icecream, saltine crackers with cheddar cheese, and potatoes with sourcream. Not a reduced calorie diet at all!

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Corinna | GFAi. Wheldon Protocol: 4–8/08. Can't kill the yeast.

 

Hi Corinna,

Hope you are doing a little better?

Much of your weight loss may be due to your high intake of Vit D3. My dad and one of my friends have reported this same thing. Here are some studies that might explain this effect:

• Association analysis of vitamin D-binding protein gene polymorphisms with variations of obesity-related traits in Caucasian nuclear families.

• 25-hydroxyvitamin D, IGF-1, and metabolic syndrome at 45 years of age: a cross-sectional study in the 1958 British Birth Cohort.

• Vitamin D, the renin-angiotensin system, and insulin resistance.

Many other studies can be found here:

• Vitamin D Council: Obesity

And an easy to read article here:

• Rain makes Scots fat, not the chip: Aberdeen researchers blame blame a lack of sun and vitmain D for obesity problem

 

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Treatment for Rosaceai

• CAPi:  01/06 - 07/07
• High-Dose Vit D3, NACi & FIRi Sauna Only:  07/07 - 11/08
• Intermittent CAP, High-Dose Vit D3:  11/08 - Present

Hmmm, so what's my body's excuse, Red? Eight to ten thousand vit D daily, but the only thing that helps weight loss is dieting. Darn!

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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

Hi Dan, I swear that Vitamin Di is just the thing for this girl!

Thank you so much for these links, and for all of the other excellent links on Vitamin D. Your hard work and dedication to researching this extremely important subject has made a major impact in my life that's for sure -- I have benefited so much in such a short period of time that Tim and I are planning for the future again! We're going to chuck it all next summer and head back east to university. I just couldn't have dreamed such a scenario a few short months ago -- I'm hoping by then I'll be long passed my present need to sleep 20 hours a day...

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Corinna | GFAi. Wheldon Protocol: 4–8/08. Can't kill the yeast.

Ditto here.  I know that D3 is good for the immunei system, but it is hard for some of us msi'ers to tolerate.  The ME's and CFIDSi's may be better able to take it, not sure though.

I have 15# that rears it's ugly head every spring since starting the CAPi.  Not sure why but I can guess and agree with another poster here that stress and chronic illness and 'waiting to get better' while we endure uncomfortable symptoms all qualify as prerequisites to weight gain.  Couple that with potential thyroid and adrenal issues[cortisol] and you got the makings of Mamma Cass---that is who I am feeling like these days. 

And the "magnetic bed" that MarieR is so right about doesn't help.  ;)

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Wheldon Protocol for rrmsi since Oct '05.  Added LDN 4.5mg qhs Oct '07.  All supp's.  Positive IGGi's for Lyme Disease,Babesia, & Erlichiosis Sept. 2008.  Currently:  Mepron 750mg bid and Azithromycin 250mg qd for Babesia.

Reenie, KitKat2 et al.  i guess i am hearing what you are saying.  That its not technically a direct relationship between antibioticsi and (say) weight gain.  (Though if that has been proven somewhere, i'd be interested).

More that through the stress of illness and CAPi itself !!! there are often changes in weight.  For some people, that might be upwards, for others downwards.  If so, as Cypriane suggests, there may be some evening out in time (lets hope so!).

P.S. kitkat2, re vitamin Di - it is something that I have had to build up pretty slowly and i have ME/CFSi.  Now I've built up slowly I don't have a problem, but when I blasted it by starting at 4,000 i.u. i came out in loads and loads of spots (unless of course it was coincidental) and felt horribly toxic.

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M.E./CFSi 20 years, intermittent.  Wheldon Protocol - Started NACi and supplementsi Sept 2007. Doxyi and Roxy full dose by Dec '07.  First Flagyli pulse January 2008.

Corinna, Here's something to add to my long PM reply in light of Dan's comment: I have been off D all through my time on the CAPi and only very recently started taking it. I'm up to 4000iu just this week.

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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 Louise.  I spoke with my doctor evening before last (because of the blisters on my tongue, etc.) and he said the weightloss is expected. I have been very sick since starting the treatment, which is reflective of my condition before the treatment. All in all my reactions are consistent with what is described in the literature and member experiences found on this wonderful Website, so I am not concerned and my doctor is not concerned -- I just need to work to ensure my side effects are kept to a minimum by doing more anti-porphyriai measures, which we think we are starting to perfect now.  My blood sugar is excellent, my symptoms are due to the CPni treatment only. 

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Corinna | GFAi. Wheldon Protocol: 4–8/08. Can't kill the yeast.

re: GERMS & Obesity---- "The Potbelly Syndrome: How Common Germs Cause Obesity, Diabetes, And Heart Diseasei" - 2005

by Russell Farris (Author), Per Marin (Author)

8 customer reviews and you can look inside the book at www.amazon.com 

--

MacKintosh suggested this to me.  Wonderful book.  

 Sorry if the type on this post is odd.  

yes, i read the book, got the book The Potbelly Syndrone.  however, he immediately started to lose his 'potbelly' once he took antibioticsi.  perhaps it is different for people like me i.e. the CAPi continues to cause some level of cortisol release/stress for some time after starting, so that weight loss not happen.

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M.E./CFSi 20 years, intermittent.  Wheldon Protocol - Started NACi and supplementsi Sept 2007. Doxyi and Roxy full dose by Dec '07.  First Flagyli pulse January 2008.