Weight loss
Hi all,
I'm just wondering if anyone has experienced significant weight-loss on the CAPi and what they did about it.
I lost weight when I first got infected, then lost some more when I started CAP.
Starting the pulses has resulted in the biggest weight loss though, accompanied by loss of strength/stamina. This isn't something I recover between pulses - its dropped and stayed off. I'm down to 120 lbs now (I should be 145 lbs).
Its significant enough that it affects my day-to-day functioning. It also means I can't approach the CAP as I should because I'm worried about further weight-loss.
Any input much appreciated,
garcia.
CFSi since 2001. Infected CPni Jan 2006. Started CAP March 2007.
Currently: 300mg Roxi, 200mg minoi every day. 2 Pulses done.
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Rica PPMSi EDSSi 6.7 at beginning - now 2. Began CAPi Sept, 2004 with Rifampin 150 mg 2xd, Doxyi 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli total 44 pulses NC USA
3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amox 1000, Doxyi 200, MWF Azith 250, flagyli 1000 daily. Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan In for the duration.
Perhaps some of the "fat" bacteria is being killed in the protocol allowing you to lose weight.
I look forward to that happening with me in the future. It almost makes me want to start doubling my dose of doxyi.
gwa
I've lost weight, especially from pulses. But my appetite seems more broadly affected. At one time I used a nutritional product Ensure which is used to keep weight up for the ill!.
I think you might also look at thyroid, just to make sure your metabolism hasn't increased. Other than that, I'm interested to hear what others have noticed about this.
CAPi for Chlamydia pneumonia since 11/04. 25yrs CFSi & FMSi- Currently: 300mg INHi, 200 Doxycycline, 500mg MWF Azithromycin, 1000mg Tinii daily (Taking a break from continuous protocol)
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
As pre CAPi I was on a low carb diet & have had to switch that around the other way post CAP.
I have put on weight! that I am trying to lose, soooo, no ice cream for me - my favourite by the way!!
Blessings
Ruth
CFIDSi/ME 25yrs, FMSi, IBSi, EBVi, Cpni, (insomnia - melatonini, 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<
Feeling 98% well-going for 100. Very low test for Cpni. CAPi since 8-05 for Cpn/Mycoplasma P.,Lyme, Bartonella, Mold exposure,NACi,BHRT, MethyB12 FIRi Sauna. 1-18-11 begin new treatment plan with naturopath
I think I'm the anomaly. I get uncontrollably hungry during Flagyli pulses. Specifically, I crave things with ultra high sugar content such as cake icing and donuts that I otherwise don't think much about.
Houston, TX. RRMSi since 12/05. Started antibioticsi 12/06.
Current Regimen: 100 mg 3x/day minocycline, 600 mg 1x/day Azithromycin, 500 mg 3x/day NACi, slowly pulsing with Flagyl
Houston, TX. RRMSi since 12/05. Started antibioticsi 12/06.
Current Regimen: 100 mg 2x/day doxcycline, occasional Flagyli pulses
Weight GAIN on CAPi -- I have to chime in here with Ruthie about gaining weight since I started cap!. When I got married 3 years ago, my wedding dress was a size 4.... since I became ill I am now up 4 sizes!! For me this is difficult as I was always thin -- never really had a weight problem. I don't consider myself "fat"now, but I am not comfortable with myself. I noticed an increase in hunger when I started cap, but that has tapered off. I did stop smoking, but don't like to "blame" stopping smoking on weight gain. I don't eat very much at all really and my junk food is minimal compared to what I used to eat
My activity level is almost nil in that I can't exercise and am barely active other than spinning circles in my house. Soooo, I am hoping that as I get better, I will be able to be more active and the weight will come down..... I've also upped my thryoid med a bit since my last results had me being hypo I have reached the point where I can't gain any more!!!
Hearing others are losing is encouraging but, again, I guess it depends on what's going on in each person's body.
Jeanne ~CPNi 4/2007; also HHV6, EBVi, CFIDS/FM; IBSi, prior kidney infectionsi, food allergies, hypothyroid (RAI for Graves in 1998), Adrenal issues (hypo); prior bronchitis/sinus problemsi. Currently 200 mg/doxyi & 125 mg Azith daily, supplementsi
JeanneRoz ~ DXi'd w/ CPNi 4/2007; 6/07 -"officially" dx'd w/CFIDSi/FM; also: HHV6, EBVi, IBSi-C, 100 Doxyi:BIDi; 500 mg Biaxin BIDi; Tindamax Pulses, B12 shots, ERFA Dessicated Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 uni
I'm glad someone else chimed in about the weight gain. I've gained 7 pounds since starting CAPi, in addition to the 15 pounds I gained last year from being hypothyroid , low estrogen, low progesterone, low dheai, and low cortisol (all at the same time).
Mphs, TN. adrenal fatigue and CFSi. 6/26/07- CPNi Titer 1:256 (normal 1:16); 6/27/07-started NACi; 7/2/07-started doxycycline 100 mg twice daily; 7/19/07 started Biaxin 250mg per day. 9/7/07-stopped Biaxin and started on Azithromycin 250 mg every other
Mphs, TN. CFSi, hypoT (Hashi), adrenal fatigue, hormonal inbalance. right arm neuropathy-getting better. cpni, myco, EBVi, CMV, HHV-6. Capi began in 6/07. NACi 2400mg, minoi 100mg bidi, biaxin 500mg bidi. cytomel, flagyli bid continuously.
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.
On Wheldon regime [Doxyi, Azith, and Flagyli] for rrmsi since October '05. EDSSi was 6.5, now 5.5. United States.
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 qdi for Babesia.
I hear ya Princess, I started the insurer physiotherapy workouts & I am still trying to recover from the post exertional malaise I have experienced now weeks later. My body temp has been in the tank as low as 94 F...
When I am up kicking up my heels & frolicking with the other "kids" (thats for Rica) I expect I shall lose some weight & gain back a decent level of fitness. So, until that happens I am not satisfied with the way I look!
What can ya do about things you cannot change!
exactly!
Ruth
CFIDSi/ME 25yrs, FMSi, IBSi, EBVi, Cpni, (insomnia - melatonini, 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<
Steve has lost about 40 pounds over the past 13 months on the CAPi and is looking very spindly. I have gained 15 pounds over the past year. The first 9 months included non-CAP anti-Cpni efforts, and the past 4 months have been on the CAP. I think these disparate weight responses have everything in the world to do with which body tissues/organs are most infected (areas of genetic vulnerability), gender/hormones, and the differing intensities of our bodies' cortisol responses. I feel my cortisol response to the increased inflammationi from the CAP has been powerful. I also think that Steve's protracted battle with intestinal yeast overgrowth is culpable in his weight loss.
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.
Joyce (self)~Generally Falling Aparti with varied symptoms, especially those Potbelly Syndrome symptoms, tested positive for chronic Cpn infection.
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.
A whole raft of reasons has contributed to my weight gain over the past 18 months. I have always had problems controlling my weight in spite of fairly sensible eating. I remember when this first started.
As a child I was tall and spindly, even at puberty (which came early for me) I was a bit of a beanpole, but then around the age of 14 I had an operation on my sinus, and practically overnight I started to put on weight. It was like a switch had been thrown... From that point on I struggled constantly to keep me weight to a sensible 140lbs which for someone 5'6" tall is not exactly skinny.
My best way of controlling my weight was the usual combination of exercise and careful eating. In the past 18 months many factors have contributed to my weight gain: lack of exercise, worry over my loved ones illnesses, cooking other people meals and not having the energy to cook my special healthy diet (low fat - low refined carb), and flagyli.... Flagyl had two fattening effects on me, it made me ravenous and eating helped me cope with the awful taste, so all day long I would pick at something to put in my mouth. So Joyce I'll see your 15lbs and up it by 5.
I think things seem to have turned a corner recently, I'm finding that I'm much more able to say to myself I'm full, I can't eat any more, especially in the evening which used to be the worst time for me. It's as if my apestat has come back online... I've lost a couple of pounds in the past two weeks without trying... I hope it continues. It will make it much easier to get back to exercising when my feet are well enough for it.
Michele (UK) GFAi: Wheldon CAP1st May 2006 . Daily Doxyi, Azi MWF, Flagyl at 400mg for 7 days prior to 5 day pulses at 1200mg three weeks cycle. Spokesperson for Ella, RRMSi Wheldon CAP 16th March 2006
Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse.
Garcia good morning. Peace to you from a NACi reactive gal.
I tried to personal mail you however you are not accepting email within the site because I wanted to ask you questions regarding your food ingestion, amounts, frequency of meals, carbohydrate, protein and fat content. Lots of specifics would be needed to get a sense of your presentation and habits. Beyond suggesting the visit your doctor for a check up general sort of response.
Nutrition has been my first line defense for my saga of lack of energy. And because of my education I have taken formal courses in basic nutrition, now so long ago. Anyway I actually was interested enough to remember it and when I first became general energy deficient I continued my interest and reading over the years and have had past success as I attempted to modify my energy level based on my food plan.
For nearly the past 10 year, I have followed the info that can be found at drsears.com and in the books written by him. I have done several workshops with him and take their brand of concentrated contaminant free Omega 3 fish oil. He is a proponent of Omega 3 fish oil and his writing explains the anti-inflamatory effects of it and it's benefits in cellular function and repair. I would reccomend that if you want to read more that you personal mail me and I can make a few suggestions regarding them if you like. Dr Sears suggests that his first book was written for MD's and would not be the one to start with, also the book was written in the early 1990's and the approach has shifted a bit over the years, fish oil was not part of the early work. This food plan works from the perspective of eating more than a max of 500 calories a meal, however the plan advocates 3 small meals and two balanced snacks per day. It is considered a protein adequate moderate carbohydrate and low fat approach. It serves to stabalize insulin production and avoids high glycemic foods that cause insulin spikes which drive hunger for sweets and a resulting fatigue.
I continue to eat in this fashion and am at the weight that I was 30 years ago. However there was more to my lack of energy! CPn likely for several decades and Lyme Borriella, undiagnosed for at least several years.
So glad to be on the CAPi path. Got to go and eat a full 40/30/30 balanced breakfast that makes it possible to take the morning dose of Doxyi 200mg and NAC 1200mg without nausea and or pain. My full supper takes care of my evening pills. This all is part of how I take that Doxy strength.
Louise, Maine USA, CFSi, Bb, high dose Doxy 400mg/day, NAC 2.4Gm/day, currently no macrolide or bacteriocide, will be considered at next physician visit in 7 weeks.
Thanks to all those who replied. Sorry I can't reply to you individually - I'll just go through the main points.
To those who mentioned diet, its not about what I eat but rather the quality of my endocrine system. Eating more/different doesn't help.
Jim - I have severe endocrine dysfunction (both thyroid & adrenal), caused by Hg poisoning, exacerbated by CPni. I've tried every fix out there over the last 2 years and unfortunately nothing works long term, other than addressing the underlying cause - infection/toxicity. Unfortunately at the moment I can't even do that so am at an impasse to say the least. I'm too weak to even do pulses, and as for chelating - forget it.
As an example of my endocrine dysfunction I'm hypoadrenal, yet as far as the CPn is concerned I provide an ideal cortisol-rich environment in which to reproduce. Increasing cortisol makes me feel better, but makes the infection much worse. Reducing cortisol makes the infection much better but makes me feel worse.
Joyce, Steve's weight loss sounds substantial like my own. Has it impacted his functionality at all? I've gone from being able to take care of myself to becoming housebound and non-functional.
Any kind of detoxing requires a certain amount of physical reserve. Once you lose that reserve things can become extremely tricky as I'm finding out.
garcia.
CFSi since 2001. Infected CPn Jan 2006. Started CAPi March 2007.
Currently: 300mg Roxi, 200mg minoi every day. 2 Pulses done.
Garcia,
Have you researched, considered, etc... any of the so called adrenal "adaptogens"?
I personally have experienced good results in re normalizing both hypo to the point of almost non existant as well as excess adrenal cortisol curves using these types of products.
Daisy-Caregiver- Balo's Concentric Sclerosis. Began CAPi 5/10/07. Doxyi 200 mg, Minoi 100 BIDi 9/1/07, AZI 250mg QDi 9/10/07, NACi 1200 mg, HD Flagyli Pulses, Novantrone, Prednisone & daily lb of supplementsi.
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.
garcia, So far, Steve hasn't lost any functionality; he still works full-time. He has particularly lost upper-body mass and strength, muscle wasting, actually. His second round of oral chelation will be done at the end of this month, and I'm hoping that change along with some recent changes to his gut repair regimen will turn things around. In the meantime, I'm feeding him more avocadoes. If legume avoidance were not part of his dietary observances, I'd be spoon-feeding him peanut butter.
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.
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.
Hi Daisy,
yes I've used every adaptogen out there (e.g. siberian ginseng, indian ginseng, brazillian ginseng, korean ginseng, cats claw, sarsaparilla, american ginseng etc. etc.). Before I caught CPni I would do well on them - e.g. siberian ginseng. However since catching CPn I seem to have a very strange type of cortisol disregulation which means I react badly to both hydrocortisone and adaptogens.
I'm basically hypersensitive to cortisol. Even small amounts give me symptoms of hypercortisolism, despite being hypoadrenal. Since getting CPn, taking adaptogens also gives me symptoms of hypercortisolism.
I specifically avoid all adaptogenic herbs (many anti-chlamydial herbs are also adaptogens) because of my bad reactions to them.
garcia.
CFSi since 2001. Infected CPn Jan 2006. Started CAPi March 2007.
Currently: 300mg Roxi, 200mg minoi every day. 2 Pulses done.
Many thanks for the reply Joyce.
The weight loss must be annoying, but at least Steve can work and hasn't lost functionality which is the main thing. I know us guys hate to lose muscle-mass, but muscles will come back with good health. The important thing for now is being able to function.
In the past I've used copious amounts of butter for weight gain - I would eat 1 pound a week or more. It worked. Problem is that this time not even that is working. I've been trying to regain my weight/strength for 3 months without luck.
P.S. I could do with a couple of Joyces for my own support team! Know where I could find them?
CFSi since 2001. Infected CPni Jan 2006. Started CAPi March 2007.
Currently: 300mg Roxi, 200mg minoi every day. 2 Pulses done.
garcia, Target women who do volunteer work of any kind. The ones who volunteer for animal societies, especially. They might need a man on whom to lavish their affection and nurturing instincts. Best wishes.
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.
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 - No peanut butter but certainly you guys could use almond butter, cashew butter and macadamia butter. All good smeared on a sweet potatoe or other winter squash and also good on celery sticks and apple/pear slices!
Daisy-Caregiver- Balo's Concentric Sclerosis. Began CAPi 5/10/07. Doxyi 200 mg, Minoi 100 BIDi 9/1/07, AZI 250mg QDi 9/10/07, NACi 1200 mg, HD Flagyli Pulses, Novantrone, Prednisone & daily lb of supplementsi.
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.
Daisy, Steve has a soft spot in his heart for you already. When I tell him what you suggested, he might find an excuse to show up in Atlanta.
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.
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.
Oh GOOD! I hope you'll come along too! ! !
Let me further entice you both with gluten free (amaranth) pancakes with cashew butter and raw agave syrup for breakfast and how about spaghetti squash with extra garlic and basil marinara sauce with grated fresh macadamias which makes by the way a fabulous casein free parmesan cheese substitute.
Seriously - for caloric density AND good fats, it's hard to beat a couple of table spoons of high quality nut butter on anything!
I have a soft spot in my heart for Steve so I will make all this and more WHEN you come!
Daisy-Caregiver- Balo's Concentric Sclerosis. Began CAPi 5/10/07. Doxyi 200 mg, Minoi 100 BIDi 9/1/07, AZI 250mg QDi 9/10/07, NACi 1200 mg, HD Flagyli Pulses, Novantrone, Prednisone & daily lb of supplementsi.
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.
Have you considered Raw Adrenal Concentrate (bovine) as a dietary supplement? One of the other many things that I have tried along the path. And as so many things it did help some with my energy deficits.
I am also a bit hypoadrenal by virtue of the congenital absense of one kidney and therefore one adrenal gland as well.
And about what one eats having nothing to do with weight loss at a certain point the body digests itself if not provided with enough calories to sustain it's mass. I have watched a fair number of rather heavy people waste away as a result of inadaquate intake when left to their own appetite and ability to ingest without forced supplementation or tube feedings or hyperalementation IV therapy.
Also regarding your thyroid have you had your T3 and reverse T3 tested? If your ratio of reverse T3 is significantly higher than your active T3 great fatigue can result and the usual Thyroid supplementsi would not do in that case. This is one of the tests done in screening for causes of unrelenting fatigue at FFCenters her in the USA.
I am sorry you are having a tough time and feeling so depleted and I hope you find a solution for your concerns.
Louise
Hi Louise,
I started taking adrenal glandulars a couple of years ago - it helped me before I caught CPni, but post-CPn it has been totally ineffectual.
Sorry to hear that you only have one kidney - I didn't realise that meant you only have one adrenal gland too.
Reverse T3 is almost always high in chronic illness - the question is how to undo this. Most people can just supplement - but not me. Believe me I've tried every thyroid fix out there to no avail, just to give you a sample: T4, T3, thyroid glandular, kelp, Iodoral, thyroxine, T2, etc. I get a short-term fix before the body's feedback loops kick in and my body renormalises.
Thanks for the commiserations. I have a feeling that the only way I'm going to find a solution is to make one myself.
CFSi since 2001. Infected CPn Jan 2006. Started CAPi March 2007.
Currently: 300mg Roxi, 200mg minoi every day. 2 Pulses done.
Daisy,
if words could feed I'd be totally full by now! Thanks for sharing that veritable feast.
CFSi since 2001. Infected CPni Jan 2006. Started CAPi March 2007.
Currently: 300mg Roxi, 200mg minoi every day. 2 Pulses done.