Hi Ding,

Welcome to the site, you seem to have landed in the right place.   I've sent you a private message that you can pick up from My Inbox on the left. 

I urge you to add a signature to your profile so that it shows when you post and we know now and in the future what the diagnosis and what treatment you are following.

I must advise you that we support a CAPi [7] but that this treatment is not widely accepted by the medical community who are often unaware of the nature of Cpni [1].   I would encourage you to read as much as you can about this wicked little bacterium.   If you have not already I suggest you start with the Getting Started module which will give you an overview of the problem and the possible solution. 

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Michèle (UK) GFAi [9]: Wheldon CAPi [7] 1st May 2006. Daily Doxyi [10], Azi MWF, metroi [11] pulse. Zoo keeper for Ella, RRMSi [12], At worse EDSSi [13] 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

You might look into getting some of this info to Dr. Montoya. I know that Dr. Powell has had some personal contact with Dr. Montoya, and perhaps his sensitivity to Cpni [1] as an agent in CFSi [4] has been due to Dr. Powells mention of this. Dr. Montoya sounds to be an open and forthright researcher, so he might be interested in understanding more of the multi-phase nature of Cpn. Dr. Stratton is always available to interested physicians contacting him at Vanderbilt as well.

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CAPi [7] for Cpni [1] 11/04. Dx: 25yrs CFSi [4] & FMSi [14]. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii [15] 1000mg/day pulses; Vit D2000 units, T4 & T3

Ding, First off, welcome. It's obvious you're computer literate from the links you posted and far less brain-fogged than many on their first arrival here, so that's a plus. At least navigating the site won't be a problem for you.

Read til you can't anymore.  Michele just rewrote the Getting Started section, which will help you immensely.  Some of the medical papers on the site are eye-openers, too, if you can wade through the jargon.

 Ask and we will be more than happy to help.

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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

Welcome to the group of crazy CAPpers.

You may not feel worse before you get better. So ramp up everything slowly to suit your lifestyle for tolerance.

Get plenty of moppers & don't underestimate the seriousness of secondary porphyriai [16] & endotoxinsi [17].  I have found it best to be as preventative as possible thereby lessening the scarier symptoms & trying to clean them up after the fact.

Blessings for your wellness journey.  You will look back & be quite pleased you found us I am quite sure.

r

 

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CFIDSi [18]/ME 32 yrs, FMSi [14], IBSi [19], EBVi [2], CMV, Cpni [1], chronic insomnia, Lymes, HME, Natural HRT peri-M, NAC 3 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#15 750 mg X 5 days 11-1-08

Greetings, Ding!

My story is much like yours....HHV-6, EBVi [2], HSV1, VZV and Cpni [1].   Oops, enterovirus too.   I was on valcyte for 9 months, now I'm on the doxyi [10] for the Cpn.   I will be going on acyclovir (I think that's right)...another anti-viral drug, as my titers to HHV-6 which had dropped substantially, came back up off the valcyte.

My titers to Cpn are dropping, so that is good.  I think, my doctor is happy with that and is not interested in a CAPi [7] at this time.   And for now, adding one drug at a time is the best way to go.  However, I too, would be interested in the CAP....

 Best wishes for wellness!   Timaca

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Diagnosed with lyme disease 3/05. Diagnosed with chronic HHV-6, EBVi [2], VZV, and HSV1 6/07. Diagnosed with CPni [1] 5/08. On antibioticsi [20] for 2+ years, Valcyte (antiviral drug) for 9 months. Currently on 100 mg doxyi [10] bid for Cpn and acyclovir for viruses.

Wow, thanks for all the replies. I really didn't think I'd get that much of a response. Thanks (again) for all the info and advice.

I'll try to come up with some sort of signature . I'm just on the doxyi [10] so far, so it won't be very interesting compared to most of yours!

It would appear that I may need to do a bit of convincing if I'd like Dr. Montoya to "do" the CAPi [7]. I don't like telling docs their business, but Dr. Montoya does seem to be a fairly inventive and open-minded guy, so perhaps he will be receptive. (And this all assumes that a CAP is indeed the way to go. That's certainly the impression I've gotten on this site.)

I don't know who Dr.s Powell and Statten are right off hand, but that's interesting that there's been some contact between Powell and Montoya.

My brain-fogginess comes and goes. On my good days, I muddle through pretty well. (Which is fortunate since that's how a make my living.) On my bad days... I don't spend much time at my computer. I find it interesting that this "fogginess" is common enough to rate a mention. I'm not sure I would would had self-described my main symptom as "fogginess", but it's certainly closer than "fatigue". (I'd describe my main symptom as "wooziness". Like I have been breathing paint fumes. Or have just woken up from an unrefreshing nap. Somewhat dizzy, but no room-spinning vertigo.)

The theory behind POTS is that my autonomic sytem is a bit confused, resulting in insufficient oxygen to the brain. My heart rate adjusts upwards to compensate, but this doesn't suffice. Now, is the CPni [1] causing the POTS, which is causing the wooziness, or is the CPn causing the wooziness through a different mechanism? Or both?

Oddly enough, I'm sort of looking forward to "secondary porphyriai [16] & endotoxinsi [17]". In the sense that they would tend to confirm that the CPn is a legitimate problem. Since my blood test showed somewhat elevated titers for a lot of things, I'm not positive that we're barking up the correct tree. Some sort of dramatic response would be reassuring... (I can only say this because I haven't had one!)

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Symptoms: Wooziness, sweating, ringing in the ears.
Current diagnoses: POTS, and elevated titers for CPni [1], EBVi [2], HHV-6, and HSVi [6]-1.
Current meds: Salt tabs & Toprol XL for POTS. Doxycycline for the CPn. No CAPi [7] plan

You can 'test' for cpni [1] by taking NACi [8].  Relatively inexpensive, over the counter availability, convenient.  If you develop 'flu-like' symptoms, you have an answer.

The brain fog clears pretty quickly for most people, so that alone was worth doing the CAPi [7] in my mind.

Oh, and that doctor's name is Stratton. You know; the Stratton who had a huge part in discovering this treatment and that patent that's saving all of us.   (The other one is Dr. Michael Powell, in Sacramento, Ca.)

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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

Oh, right.  The "NACi [8] test".  I was thinking about trying that one myself, if my doc didn't already have a plan to add a second antibiotic himself.  It would appear that my infectious disease doc doesn't (yet) subscribe to the CAPi [7], so I guess doing some experimenting might be a good next step.

I'll hunt around this site and see if I can find a description of the "test".  I seem to recall it was 1,200mg or more of NAC for several days running.  Perhaps with a ramp-up to avoid... heartburn?  I'll go look around.

Is their any benefit to waiting a while, in order to give the doxyi [10] time to do its thing before pulsing the NAC?  Say, waiting until I've been on the doxy for a full month before experimenting with the NAC?  (I'm just wondering if the doxy might have the effect of "softening up" the CPni [1], so as to make the die-off more likely/impressive.)

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Symptoms: Wooziness, sweating, ringing in the ears.
Current diagnoses: POTS, and elevated titers for CPni [1], EBVi [2], HHV-6, and HSVi [6]-1.
Current meds: Salt tabs & Toprol XL for POTS. Doxycycline for the CPn. No CAPi [7] plan

Ding,

I too welcome you to the site.  You will get the help and support you will need here.  I'm a newbie so I probably cannot be as much help as the others, but I do encourage you to read the Handbook.  And welcome.

 

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FMSi [14]/CFSi [4] 12 yrs., IBSi [19], Hypothryoid, EBVi [2], CMV, Sleep Apnea, Cardiac Arrythemia, Sjorgens, Depression, Brain Fog, Cpni [1], On CAPi [7] since 10-1-07, Currently on NACi [8] & Delta Fr. E  Valtrex, Lysine, and Guna Virus

Pretty much the opposite. We usually start with the vitaminsi [21], supps and NACi [8], then add the abxi [20]. As for testing with NAC, start with one 600mg capsule and do that once. Then, depending on response, take one a day. Then you can ramp up. At full dose, most of us are taking 2400mg a day. You can see reactions, though, with as little as one pill, so don't overdo at first.

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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

Welcome, Ding. You have come to a place where open scientific information abounds. It is a place of hope or it has been for me. However it requires time spent digging out the information to understand the pros and cons of this treatment approach. 

Our recently formated Getting Started page is designed to help the new seeker here to come up to speed and the individual or a personal representative generally takes on the job of learning to process and presenting it to their practitioner as an option for treatment. 

Our forums of quite interesting yet without the information that the Getting Started page provides the discussions can be confusing.

You can find this information at the top of any page here by clicking on the tab with the words Getting Started.  This Tab is added to from time to time.

Wishing you Healing and renewed Heatlth.

Louise

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Louise  CFSi [4], CPN+/Bb+,Wheldon CAPi [7] 6/07, Cholestyramine 1-2 pks @ HS for Porphyriai [22] & Endotoxinsi [17] PRN, Doxyi [10] 200daily, Roxi 300BID, Tini500BIDx14day pulses,VitD3-10,000IU, Iodoral 25mg, {S.O.D.3/QD[KAL Brand], Pyruvate 3.75G, SAM-e For Energy Support

Hi Ding and welcome.  So, are you a professional computer whiz or a paid muddler?  Just kidding.  I also want to encourage you to get on the supplement band-wagon.  Please check out the "recommended supplementsi [23]" page, and PLEASE don't underestimate the need for probiotics, which should be taken at least 2 hours before or after antibioticsi [20].  Have a successful trek.

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Joyce~caregiver-advocate in Dallas for Steve J (SPMSi [24]).  CAPi [7] since August 06, Cpni [1], Mpn, B. burgdorferi, systemic candidiasis, EBVi [2], CMV & other herpes family viral infectionsi [25], elevated heavy metals, gluten+casein sensitivity. 

Welcome here. Best of luck with your journey

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CPNi [1] pcri [26] and antibody positive , treating MSi [27], CFSi [4], TMJ, trigeminal neuralgia, IBSi [19] neutropenia, pus found in facial bone, Doxyi [10] 100x2,Doxy 200x2 zithro 250x1 alternate days. Metroi [11] pulses each month.

Thanks again for the welcome.

Yes, I read the Getting Started page weeks ago. A couple times. And most of the handbook. I just haven't commited it to memory yet. :)

So, I got an email back from my doc's assistant. She said she showed the doc my email (asking about CAPi [7]) and that he was generally of the opinion that I'd be on doxyi [10], and only the doxy, for a long time. So, I've got some work to do on that front.

I have been taking a "strong" multi-supplement [28] for years. Decades, even. At full dose, (nine horse tablets a day) it provides 600mg of NACi [8] all by itself. However, I don't usually remember to take all 9 of them, and I often forget entirely. I even worry that this entire ordeal that I'm going through may be a consequence of underdosing on my supplementsi [21] after getting "dependent" on them. That may have thrown my immunei [29] system for a loop. Hard to know. But in any event, I really need to get back in the routine, and probably supplement even more on top of my normal regimen....

What I meant to say, before going of on a tangent, was that 600mg of NAC is unlikely to do a thing. I'll have to dose a lot higher than that, I'm guessing. I better order some.

Regarding the pro-biotics: Yeah, the doxy is really upsetting my stomach. Mainly in the morning, for a couple hours after my empty-stomach dose in the morning. The prescribing doc told me to "eat yogurt", whereas my pharmacist said a pill would be probably be both more effective and more convenient. So, I'm doing both. I can't say that it seems to be helping much, but it can't be hurting either.

Any advice for avoiding morning time nausea/cramping? Is it okay to eat a bit after taking the doxy? Say, after 30 minutes?

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Symptoms: Wooziness, sweating, ringing in the ears.
Current diagnoses: POTS, and elevated titers for CPni [1], EBVi [2], HHV-6, and HSVi [6]-1.
Current meds: Salt tabs & Toprol XL for POTS. Doxycycline for the CPn. No CAPi [7] plan

POTS is something like your blood pressure does not adjust sufficientlly when going from sitting to standing? Some of us have had our blood pressure go up when when starting azithromycin so if your doc does put you on CAPi [7] and you start taking azi I wonder if it will help with POTS. You might want to keep a close eye on your bp so if the azi does affect it you can adjust your salt tabs and Toprol doses accordingly.

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GFAi [9] - asthmai [30], 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 [11] pulse started June 30, '08. Added Doxyi [10] 200mg/day Aug 16.

Take the doxyi [10] WITH FOOD. Several people here can't do it any other way. I eat erratically, and sometimes take doxy with food and sometimes not. I can't say it's affected my fairly thorough recovery.

Later, on, once you've acclimated to the protocol, you can try doxy without food again, but right now you're just punishing yourself needlessly.

Also, don't take the probiotic or the yoghurt within a couple hours of the doxy, or you're negating any benefit from the probiotic.

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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 Ding and welcome!

When I started on 600 mg I didn't feel a thing either but several folks here told me not to forget the supporting supplementsi [23] to go with. (selenium and E I think) It does help your body use the NACi [8]. I still didn't get much reaction until I quickly titrated the dose up to 1200 mg 2/day and it wasn't until I boosted my immunei [29] system with the rest of the supplementsi [21] that ai got much reaction at all but I did get some; at least to know it was working.

THIS [31] is a really good page about NAC and what to expect on David Wheldoni [32]'s site. You'll hear his name mentioned here as well.

HERE [33] is Dr Michael Powell's site. You might be interested in reading his ideas too.

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NACi [8] 2.4g, Zithi [34] 250mg/MWF, minoi [35] 200mg, Tinii [15] 1g/day pulses, Iodoral 25mg, Supps, CFIDSi [18]/FMSi [14], Hashimoto's, Psoriasis, PA, IBSi [19], Secondary Addisons

Don't believe everything you think!  

Thanks for the links, Reenie.

It's okay to take the doxyi [10] on a non-empty stomach, huh?  Well, that would certainly make my life easier.  I believe certain minerals can interfere with the uptake of the doxy, so I'll read up and see if there are some foods I need to avoid.

I think I probably get enough E and Selenium right now, as long as I remember to take my vitaminsi [21]!  I will double-check that I'm getting a sufficient dose, however.

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Symptoms: Wooziness, sweating, ringing in the ears.
Current diagnoses: POTS, and elevated titers for CPni [1], EBVi [2], HHV-6, and HSVi [6]-1.
Current meds: Salt tabs & Toprol XL for POTS. Doxycycline for the CPn. No CAPi [7] plan

Ding,

You mainly want to avoid calcium and magnesium supplementsi [23] but it's not as critical to avoid it in foods.  You might want to avoid dairy if you wanted to be super cautious, when you're taking your doxyi [10] dose.   

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NACi [8] 2.4g, Zithi [34] 250mg/MWF, minoi [35] 200mg, Tinii [15] 1g/day pulses, Iodoral 25mg, Supps, CFIDSi [18]/FMSi [14], Hashimoto's, Psoriasis, PA, IBSi [19], Secondary Addisons

Don't believe everything you think!  

Joyce (Cypriane) -- I love "paid muddler." I wonder if they could change the sign on my cube?

 

Ding -- glad you posted; I'd been wondering about Dr. Montoya's work and his stance on CPni [1]. Thank you!

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Ron

On CAPi [7] for CFSi [4] starting 01/06 (NE Ohio, USA)

Currently: doxyi [10] & zithi [34] -- continuous; metronidazolei [11] -- 5 days on, 9 days off.

Get the research results you paid for: support Open Access

Welcome Ding,

you are in the right place.

Blessings for your wellness journey.

Expect the unexpected.

 

r

 

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CFIDSi [18]/ME 32 yrs, FMSi [14], IBSi [19], EBVi [2], CMV, Cpni [1], chronic insomnia, Lymes, HME, Natural HRT peri-M, NAC 3 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#15 750 mg X 5 days 11-1-08

Oddly enough, I'm sort of looking forward to "secondary porphyriai [16] & endotoxinsi [17]". In the sense that they would tend to confirm that the CPni [1] is a legitimate problem. … Some sort of dramatic response would be reassuring...

Hi Ding and welcome.

I was of the same mindset as this, and I am still fascinated by what the endotoxins do to me. Since beginning the CAPi [7], I have now been completely 'reassured' that CPn has been the cause of alot of my troubles -- still it does make the secondary porphyria an almost welcomed experience.

I quickly learned to take those endotoxins seriously because killing off the CPn has made me a very sick girl. Luckily(?) I am self employed so have been able to coast at work through the worst of it. The secondary porphyria began subtly, I was unsure of what was just me exhibiting typical vague unwellness or if it was something else -- then bam, BAM! Mystery solved. And it's hard to get out of: fatigue, weakness, muscular then tendon and now bone pain, skin blisters, hands and feet are peeling, gross capillary fragility with large tracts of blood vessel breakage from everyday activities (like carrying a bag), mild and sustained nausea, a lot of vomiting, coughing, sweats (I never perspired for years and now I am soaked most of the time) and weight loss of 25lb since June.

To counter all the above I eat meals and snacks that are high carb/low protein, and munch glucose tabs at the least hint of anything and consume at least one whole package a day, I take Vitamin C immediately upon waking and in the evening, and also when I am in pain or if the nausea is not lessened by the glucose -- I take charcoal caps when the C fails. I am also taking Cimetidine because it is supposed act as a bind for the bile and mop up the porphyrins, though I really am not sure how well it's working because I am doing so many other things.

I still have wicked secondary porphyria and the "moppers" are always close at hand. (I have stashes everywhere now.) I have also learned that endotoxins can quickly accumulate if I do not take enough measures and then it is hard to clear and takes really sustained efforts.

Once you read about the 3 cycles of CPn and the requirement for the various ABXi [20] and NAC you'll likely want to approach the topic of a treatment modification with your doctor. You are lucky in your doctor, many of us have to find our own way to this diagnosis and then search out someone to believe and treat. Luckily there are doctors that are aware, or open to what's new (even when it really is not that new at all), still some folks with CPn are left with no alternative but to self treat.

There are 2 very good books available to the layman which you may want to pick up: The Potbelly Syndrome and The Heart Attack Germ. I have completed the first and am just getting started the second. Both focus on CPn but discuss other infectionsi [25] as well.

Best wishes,
Corinna

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Corinna | GFAi [9]. Wheldon Protocol: 4–8/08. Can't kill the yeast.

Hi Ding!

I too am new here and have also seen Dr. Montoya.  I was wondering about his perspective on CAPs, so I'm glad you posted his response.  He's a very kind and open minded physician so you're in good hands.

When i had extreme cognitive difficulty & brain fog I found using daily pill organizers (by day of week) helpful for remembering my meds. It was the only way i remembered to take my meds! You can pick them up at any pharmacy.  Perhaps mark different ones for the different times of day you want to take the pills.  

Best with your treatment regime.  

VF 

 

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ME/CFSi [4]/VICD - HHV6, EBVi [2], HSV2; 9mo. Valcyte now Valtrex. CpNi [1] - not yet in treatment.

Wow, Twickle Purple, those endotoxini [36] effects sound pretty hair-raising.  You are sort of dampening my enthusiasm for them.    Of course, since Dr. Montoya is not yet on board the CAPi [7] train, I will attempting to trigger a reaction with doxyi [10] and NACi [8] alone.  We shall see....

The last few days have been much more tolerable, since I've started eating after taking my morning doxy.  I tend to get up, take my pills, and then get ready for work.  Right about the time I'm ready to leave, the nausea hits.  So now, I'm just grabbing something to eat on my way out the door.  I'm not a breakfast eate, even in the best of times, so it's a bit difficult to choke anything down, but it certainly seems to be helping with the tummy troubles.

I gotta say, the idea of going on a high-carb, low-protein diet is very alien to me.  I seem to do best (weight-wise) on low carbs, and I try to keep my protein intake as high as is practical in order to avoid losing muscle mass.  Sounds like I may need to turn all of that on its head for the duration of the emergency. 

There are books about CPni [1]?   I guess I better check those out.

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Symptoms: Wooziness, sweating, ringing in the ears.
Current diagnoses: POTS, and elevated titers for CPni [1], EBVi [2], HHV-6, and HSVi [6]-1.
Current meds: Salt tabs & Toprol XL for POTS. Doxycycline for the CPn. No CAPi [7] plan

Hi Ding, not everbody reacts the same, so don't get scared. My own reactions were tolerable until now. I now take the Doxyi [10] in the evening, right after the meal. I was also always on a low carb diet but have developped a craving for high carb stuff lately.

Good luck

 Daniela

CPni [1],  on full Wheldon protocol since April. Only the most necessary supplementsi [23]

 

 

For many years I've followed a high protein, low carb eating approach and I was uneasy changing this. Apart from fearing massive weight gain and muscle loss, I am allergic to gluten and gliaden. I was very surprised that with regular small meals of good carbs, as well as snacks of not-always-so-good carbs and eating pure sucrose constantly that I have lost so much weight. For convenience, I bought breakfast bars which I eat at all hours, you might find those handy in the morning, for snacks or as quick meal replacements.  I avoid all fruit/fructose. 

My Endotoxini [36] reactions started with NAC and got worse with Doxyi [10]. You may want to keep a record of how you are so you can monitor any changes. They can be subtle at first and if you don't squash them they can quickly become not so subtle...

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Corinna | GFAi [9]. Wheldon Protocol: 4–8/08. Can't kill the yeast.

Corinna, Your weight loss is the first that I have read talked about since I started following this CAPi [7] and this website over a year ago.  Most folks talk about weight gain if they talk about weight at all from what I have read.

Have you had a good screening for diabetes recently?  It can happen quite quickly for some folks.

Weight loss, weakness and perhaps more of the complaints you have could be related to the onset particularly with your change to high carb diet after such a sustained and adherence to Gluten-free diet and low carbs.

 

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Louise  CFSi [4], CPN+/Bb+,Wheldon CAPi [7] 6/07, Cholestyramine 1-2 pks @ HS for Porphyriai [22] & Endotoxinsi [17] PRN, Doxyi [10] 200daily, Roxi 300BID, Tini500BIDx14day pulses,VitD3-10,000IU, Iodoral 25mg, {S.O.D.3/QD[KAL Brand], Pyruvate 3.75G, SAM-e For Energy Support

I second viral free's recommendation of a pill reminder.  I have a rather large one that has 7 days, with 4 compartments per day for pills (a.m., noon, p.m. evening).    It works well for me.

Best,    Timaca 

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Diagnosed with lyme disease 3/05. Diagnosed with chronic HHV-6, EBVi [2], VZV, and HSV1 6/07. Diagnosed with CPni [1] 5/08. On antibioticsi [20] for 2+ years, Valcyte (antiviral drug) for 9 months. Currently on 100 mg doxyi [10] bid for Cpn and acyclovir for viruses.

There is a recent thread [37] on the subject of weight loss which may be useful to read through, some gained and many lost. Establishing an effective anti-porphyriai [22] regimen has done wonders for my symptoms all around, including arresting the weight loss and lessening the pain, I still have a lot of weakness and expect to for a good while yet, but I see a lot less blood vessel breakage. My symptoms are a result of the meds and die-off. (My blood sugar levels are excellent.)

 

EDIT: I see that you have posted in that thread already (perhaps then you missed all the posts from members discussing their own weight loss?) No matter, I have replied to your post there as well.

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Corinna | GFAi [9]. Wheldon Protocol: 4–8/08. Can't kill the yeast.

Corinna, I am glad to know that you have screened for the possible onset of diabetes and feel sure that it is not part of your rapid weight loss.  Just pointing out a possibility out of concern. 

And you are right I did not see your other post on that other thread.

Were you overweight to start at the beginning of CAPi [7] and now normalizing?

Hope you are feeling better. Louise

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Louise  CFSi [4], CPN+/Bb+,Wheldon CAPi [7] 6/07, Cholestyramine 1-2 pks @ HS for Porphyriai [22] & Endotoxinsi [17] PRN, Doxyi [10] 200daily, Roxi 300BID, Tini500BIDx14day pulses,VitD3-10,000IU, Iodoral 25mg, {S.O.D.3/QD[KAL Brand], Pyruvate 3.75G, SAM-e For Energy Support