Welcome Twickle,

Many of us have had to try out a few doctors before we find one with the attitude "what doctor wouldn't want their patient to get well"

Hopefully you have given her some information & she can call Dr. Stratton too.

Blessings for your journey to wellness.

CFIDSi [3]/ME 26yrs, FMSi [4], IBSi [5], EBVi [6], CMV, Cpni [7], chronic insomnia, Lymes, HME, Natural HRT peri-M, NACi [8] 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 [3]/ME 32 yrs, FMSi [4], IBSi [5], EBVi [6], CMV, Cpni [7], H1, chronic insomnia, Lymes, HME, Natural HRT peri-M, NAC 3 gm, Full CAP 6-2-08, all supplementsi [9] +Sea Kelp, Chitosan Pulse 16 1-4-09 1gm Flagyli [10]/day-3 days

It happens to all of us. My young, confident neuroi [11], who sounded all ready to prescribe for me, met with his co-practioners and the old guy stopped the idea in its tracks. Legal concerns won out. Not to worry; I found an excellent doctor who has treated me ever since. You may as well start looking now. You can be pleasantly surprised if it goes your way, but if not, then you're ahead of the game by finding someone else.

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

Thank you ruthless1 (wicked name!)

She is very open-minded, and patient, and could well turn into the best doctor I have had. I am over my initial disheartened reaction, and realize the door has not been closed, it just hasn't been opened. She had never heard of CAPi [12] or the role CPNi [7] with the diseased states before yesterday, when I sent her a link to the site, so I do appreciate that she is acting responsibly. The clinic structure is different, and they have a specific mandate for proactive wellness, so I hope this intrigues them enough to consider it.  As they are a for-profit venture (pioneers here really), the consideration of the legal implications would be deemed prudent.

I will know more within the week. Cross your fingers for me!

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Corinna | GFAi [1]. Wheldon Protocol: 4–8/08. Can't kill the yeast.

Thank you MacKintosh. I have expressed that I would be pursuing this committedly. I do want to await her input, it shouldn't be too long til I hear back. She seemed genuinely intrigued, just very cautious...

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Corinna | GFAi [1]. Wheldon Protocol: 4–8/08. Can't kill the yeast.

Twickle,

my bark is worse than my bite, except for the the Troll Queen comes to roost!

CFIDSi [3]/ME 26yrs, FMSi [4], IBSi [5], EBVi [6], CMV, Cpni [7], chronic insomnia, Lymes, HME, Natural HRT peri-M, NACi [8] 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 [3]/ME 32 yrs, FMSi [4], IBSi [5], EBVi [6], CMV, Cpni [7], H1, chronic insomnia, Lymes, HME, Natural HRT peri-M, NAC 3 gm, Full CAP 6-2-08, all supplementsi [9] +Sea Kelp, Chitosan Pulse 16 1-4-09 1gm Flagyli [10]/day-3 days

Corinna,

Have your doctor give Dr Stratton at Vanderbilt a call to get some good details.  He's very open to talking with other doctors:

Here is his contact info:

Vanderbilt.edu:  Charles Stratton [15]

Hang in there.   Finding a doc to treat this can be difficult... 

On Combined Antibiotic Protocol for Cpni [7] in Rosaceai [16] 01/06 - 07/07, On Vit D3 + NACi [8] since 07/07 and daily FIRi [17] Sauna since 08/07

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Treatment for Rosaceai [16]

• CAPi [12]:  01/06 - 07/07
• High-Dose Vit D3, NACi [8] & FIRi [17] Sauna Only:  07/07 - 11/08
• Intermittent CAP, High-Dose Vit D3:  11/08 - Present

Thanks Red, I will forward this contact information to her. As it will ultimately be a group decision I fear the interests of their organization may weigh more heavily than the needs of their patient. This will be the test.

I am not going to give up if they chose not to treat me -- I believe that this will help me. I cannot face the decades ahead without something changing. I owe it to my very patient husband to do what I can and to be the best I can.

Best regards, TP

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Corinna | GFAi [1]. Wheldon Protocol: 4–8/08. Can't kill the yeast.

Hi Twickle,

Just checking in.   Any luck yet finding a doctor?    How are you doing otherwise?  Any additional reactions to the supplementsi [9]?

On Combined Antibiotic Protocol for Cpni [7] in Rosaceai [16] 01/06 - 07/07, On Vit D3 + NACi [8] since 07/07 and daily FIRi [17] Sauna since 08/07

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Treatment for Rosaceai [16]

• CAPi [12]:  01/06 - 07/07
• High-Dose Vit D3, NACi [8] & FIRi [17] Sauna Only:  07/07 - 11/08
• Intermittent CAP, High-Dose Vit D3:  11/08 - Present

Extreme NACi [8] reaction?

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Hi Red,

My doctor said no, unequivocally, and then offered a referral to group counselling for living with chronic illness. I declined. Call me stubborn, but I have no desire to learn how to accept this, and no acquired skill set is going to make me feel better about missing out on so much, and feeling so crappy -- when I don't have to. I accept that I have bad skin. That will never change (yet I do secretly dream it will change!). I hate my skin, it stings and burns and it can feel like every pore has an irritated nerve ending some days. It sucks to hate the skin your in, and that wears at me as I age. I don't feel so resilient anymore. I would feel much more resilient though if that were the only thing affecting me. So my goal is to get rid of the things I can change, and if she won't help me (and I mean won't, not can't) then I am going to find someone who will chose to help me.

So, once it was confirmed that this was her position, I called Dr. P's office and have begun the process of getting my passport updated. My beautiful husband said he'd move to the states in a heartbeat if it would help. For now though I'll fly out and see how it goes. If we like it out there then a move could be an adventure, and we like adventures!

Today I feel very ill. The last 2 days I felt fantastic, which was a welcomed departure from last weekend which I spent in bed unable to move. This Saturday and Sunday, I gardened a good 8 hours each day and felt a wonderful physical exhaustion that I rarely have the opportunity to experience anymore. I have been taking B12 shots daily for a month or so, and a steady 2000+ D3 SL/day and NAC 600-1200/day for approx. 2 weeks. But the NAC started to really affect my stomach and today I think that I may have hit a wall with it. I take it with my breakfast shake which is rice protein powder blended with 1/2 cup blueberries, vit C, calcium and magnesium citrate, caproil, bentonite, Udo's essential oils, NutraSea (fish) oil and probiotics. Very often I experience a gut bomb right after eating, generally at the most it is mild to moderately uncomfortable with some nausea which passes within 15 minutes and with a Zantac. But today the pain was excrutiating -- it was my entire GI tract and the area under my sternum felt like it was being crushed and going to explode at the same time. I took 2 Zantac then I began vomitting. I rarely ever vomit, my gut doesn't like to let anything go, no matter how horrible it feels.

I am in bed now, feeling weak and shakey. Tim said I look pale, which is no small feat with rosaceai [16]! I'm wondering if my activity of yesterday didn't contribute to this. I was quite overheated and my face profusely red but I did not perspire -- anywhere. I did an RLT session with my dimalux after a cool shower, it didn't calm my facial redness but did alleviate some stinging. Today I am still red but in more defined areas and the skin is not hot or uncomfortable. I plan to begin using my NIR sauna again so I can learn to sweat.

On the bright side, my garden is going to look amazing in a couple of weeks! I'll enjoy it from the deep cover of the porch, where I will likely hide the majority of the summer.

What are your thoughts on my reaction to the NAC? Is that expected? Or, did my overheating contribute? Is it something in my shake? Sorry for so many questions! I really do appreciate any input you offer.

Warm regards,
Corinna

 

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Corinna | GFAi [1]. Wheldon Protocol: 4–8/08. Can't kill the yeast.

Corinna,  Steve and I also drink a Whole Approach cocktail when we wake up every morning.  The only thing we've added to it though is a couple of ounces of aloe vera juice.  His gut has never been sensitive, but was very sluggish.  I've had acid reflux disease for several years.  There have been other remedial things we've done, but we both believe that the Whole Approach anti-candida protocol has been a very helpful element in improving our gut problems.  Perhaps simplifying the cocktail down to just the basic elements (water, Bentonite, caproyl, and psyllium) with some added aloe vera juice might be gentler and healing for your gut.  It wouldn't taste as good, but you're a big girl.

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi [20]).  CAP since August 06, Cpni [7], Mpn, B. burgdorferi, systemic candidiasis, EBVi [6], CMV & other herpes family viral infectionsi [21], elevated heavy metals, gluten+casein sensitivity. 

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Joyce~caregiver-advocate in Dallas for Steve J (SPMSi [20]).  CAPi [12] since August 06, Cpni [7], Mpn, B. burgdorferi, systemic candidiasis, EBVi [6], CMV & other herpes family viral infectionsi [21], elevated heavy metals, gluten+casein sensitivity. 

Corinna,

as I was sreading your flurry of activity on the day you felt great I thought of myself.  Having things piling up & then the flurry of energy arrives & I just keep going & going until suddenly, I realize I have done too much. 

Sounds to me like some CPni [7] has been stirred up in your gut.  The gut sxi [23] are quite common among us CAPpers. 

I can't say I am surprised by your docs reaction, it is unfortunate.  I am so glad you have bounced back & already called Dr. P.  Have you PM'd Michele for another doc in your area?  A doc who is more natural medicine inclined is likely one that would be more of an out of the box thinker!

It is fabulous you have the support of your husband, mine (a CPn sufferer in denial) is not that supportive.  Thankfully God is helping me get through this on my own.

Blessings for your wellness journey, keep us posted!

CFIDSi [3]/ME 26yrs, FMSi [4], IBSi [5], EBVi [6], CMV, Cpn, chronic insomnia, Lymes, HME, Natural HRT peri-M, NACi [8] 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#10 1000 mg 3 days & 750mg 2 days, 5-17-8

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CFIDSi [3]/ME 32 yrs, FMSi [4], IBSi [5], EBVi [6], CMV, Cpni [7], H1, chronic insomnia, Lymes, HME, Natural HRT peri-M, NAC 3 gm, Full CAP 6-2-08, all supplementsi [9] +Sea Kelp, Chitosan Pulse 16 1-4-09 1gm Flagyli [10]/day-3 days

Joyce, I need the nutrients and can tolerate few proteins. I have just recently added the supplementsi [9]. It was previously just the rice protein, frozen berries (thawed to room temp), caproil/bento, EPA/Omegas and probiotics. I do add psyllium, I'd forgotten to include that in my list. I am quite allergic to aloe vera, topically, so I wouldn't have the courage to ingest it. 

I adhered to a very strict anti-candida protocol for almost 1-1/2 and experienced great energy benefits, but also developed the worst of my symptoms as well as rosaceai [16]. My husband had only good success. He had a growing granuloma annulare patch on his foot that was completely gone within 3 months of the diet. Today, I incorporate as many anti-candida principles as I possible but cannot strictly follow the routine anymore.

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Corinna | GFAi [1]. Wheldon Protocol: 4–8/08. Can't kill the yeast.

Ruthless1, it's the only way things get done isn't it?! Seize the day (or carpe the freakin' diem) is my motto. I have 100% requirements to cram into 10-15% availability. And when the energy is good I go until I can't go any more. I just believe that I am normal, if only til I am reminded otherwise. For all that I feel, for all the downtime I have, my clients do not know, and most anyone I know does not know and would be surprised to learn the truth. I have such drive to do things. I want to do it all, and I hate that my body won't play along.

My husband wanted to throw away the NACi [8] but I figured this was actually a good thing, somehow, so I asked that he hold off til I ask. I don't know when I'll feel brave enough to try again though, maybe Saturday if I don't have any work due.

I haven't looked into anyone locally. I don't want to spend much time on searching out because I will get exhausted and discouraged by the process. Where I am there is very poor access to healthcare --  a lot of folks do not even have a family doctor. I will have to travel regardless, so I figure I will go to someone that is 100% on board, in an area that I would love to see.

I got lucky with my husband. I think I won the husband lottery sometimes. That doesn't mean he isn't without faults, thankfully, I have so many that he must have some too, otherwise I would feel horrible guilt. We learn alot from each other. We've been together 20 years today. I want the next 20 years to be for him, I've had enough of looking after me.

I might suppose God put this forum in your path so you wouldn't have to go through it alone. It may not take the place of a warm embrace or tender care when you are feeling lowest sometimes but there is comfort in knowing you are not alone in your struggles and people are here to listen and help as they are able too. Like you are doing for me. You are a gift. And sometimes we have these challenges so that we may expose and act on  parts of our character that might not otherwise be nutured. It may very well bring out the best of us when we feel our worst.

Warm regards,
Corinna

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Corinna | GFAi [1]. Wheldon Protocol: 4–8/08. Can't kill the yeast.

Hi Corinna,

Hey, I'd never have believed my skin would look so good either.   So cheer up and trust me, you'll have your great old skin back hopefully in hopefully as little as a year or so, and you'll notice improvement along the way, although after also possibly getting some worsening of symptoms before (and during periods when you are increasing the anti-chlamydial agents) too.

I'm so glad you've given Dr P's office a call.   Based on what I've heard, I think you'll really like him.   He may not want to put you on the antibioticsi [25] initially so don't let this freak you out.   He may want to keep you on your current protocol for a while too (he's the one that started the Vit D + NACi [8] + FIRi [17] Sauna) therapy, or he may want to move you to something else.   The point is, he has a lot of experience treating patients on this board.    Sounds like he spends a lot of time answering questions for people, so go in prepared to ask lots of questions.  I don't think you can find someone better for treatment. 

Gosh, sorry to hear about the reaction.    You know, I'm wondering if the extra physical activity on top of your new regimine might have triggered a porphyriai [26] attack:

http://www.nlm.nih.gov/medlineplus/porphyria.html [27]

The gut and chest pain, the nausea, the vomiting are all possible symptoms and Dr Stratton suggested to me that we rosaceans may have a heap of fat soluable porphyins built up in our skin.    I know you're on a candida diet, but you may need to figure out a way to get as many starchy carbs in your diet as possible.   Drink plenty of water and while you are building up on new levels of the NAC + Vit D3 combo be very careful about doing anything too strenuous.  It can set off an "attack".    Eating too little starchy carbs still gives me problems with secondary porphyriai [28], so can more than a glass or two of wine or beer as well as eating members of the cabbage family.   Fish tacos with lots of cabbage still make my face burn (even though now oddly - and luckily! - I don't really get all that red ever anymore!

Also, if you get another attack like this, swig some gatorade or chew a couple to three glucose tablets.   You can get glucose tablets down here at any pharmacy (they're in the diabetic aids aisle).

Hang in there.   If you are still feeling weak and shaky from this incident, it really could be the secondary porphyria.   Try eating a sugar cookie, drinking a caffeine free sugary soda, etc to see if it makes you feel better.  If it does, you're staring straight down the barrel of secondary porphyria...

Keep us posted, and most of all I hope you get to feeling better soon!

 

 

On Combined Antibiotic Protocol for Cpni [7] in Rosaceai [29] 01/06 - 07/07, On Vit D3 + NAC since 07/07 and daily FIR Sauna since 08/07

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Treatment for Rosaceai [16]

• CAPi [12]:  01/06 - 07/07
• High-Dose Vit D3, NACi [8] & FIRi [17] Sauna Only:  07/07 - 11/08
• Intermittent CAP, High-Dose Vit D3:  11/08 - Present

Thanks Dan. :o) Tomorrow I'll get some sugar cookies and glucose tabs and give them a go. I hate feeling nauseous, I was prepared to handle all the side effects but was not prepared for this one. I have no tolerance for nausea, it is my major wimpness.

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Corinna | GFAi [1]. Wheldon Protocol: 4–8/08. Can't kill the yeast.

Re your reaction, You did not say what the weather was like when you were gardening.   Could you have received an unusual dose of Vit D from the sun, that can make you feel as if you had the flu for a few days... and inflame the skin of people not suffereing from rosaceai [16] in a different way to ordinary sunburn.

Your gut OK with psyllium? Mine's not... I can only take it in very small amount.

As Dan says, your skin will get better, it may take a while, it is after all the organ with the largest surface area and exposed to the most extreme circumstances; you are likely to go through all kinds of different experiences in the process of it getting better but it will happen.

Michèle (UK) GFAi [1]: Wheldon CAPi [12] 1st May 2006. Daily Doxyi [30], Azi MWF, metroi [10] pulse. Zoo keeper for Ella, RRMSi [31], At worse EDSSi [32] 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

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Michèle (UK) GFAi [1]: Wheldon CAPi [12] 1st May 2006. Daily Doxyi [30], Azi MWF, metroi [10] pulse. Zoo keeper for Ella, RRMSi [31], At worse EDSSi [32] 9, 3 months later 7 now 6.5 Wheldon CAP 16th March 2006

Michèle, that's interesting you mention the weather. I have always protected myself from the sun and last week decided to make a point to get some exposure for the Vitamin Di [33] benefits, on top of the oral doses I am now taking. That was a mistake.

The issue of my skin is a bit tricky. I have a defective gene that is normally abundant in the outermost layers of the skin, it should keep bacteria and viruses out while keeping water in to prevent the skin from drying. I go through a large tub of vaseline a week, if my skin becomes damp or gets water on it I must protect it very quickly with vaseline jelly or it will heat, crack and begin a cycle challenging to stop. The rare time I sweat is horrible, my skin is millions of little fissure cracks. But, that's just one part of the problem, I seem to have an overly active imune system and they don't know what causes the rashes. My allergies and my skin problems/eczema are apparently different issues (I could rant right about now...). I am always inflammed, the heat is just below the surface and often we cover me with (cotton wrapped) icepacks in bed to ease the heat and sting I feel. I am dilligent in my topical applications. I spent a lot of time in hospitals as a toddler and as a teen was sent to a teaching hospital for a week of study. I thought that meant they were going to help me but all they did was showcase me as a teaching tool and I felt like a piece of meat at the end of it all.

One thing that confused me the most was being told I had an 'allergy' to the sun and yet I am supposed to get fresh air. I typically get a rash and itch at the spot of exposure. I bring blankets when we are in the car so I can cover my wrists and hands, because of the heat and irritation I experience almost immediately if they are uncovered. I have been tested for porphyriai [26] with a urine test and that was negative, so it's just my 'eczema' I suppose -- they have no idea what is happening or why.

So this weekend I wore my very big rimmed hat and my full length coolibar vented shirt but let some light reflect up onto my face as I worked... so now my face is quite swollen all over, and stinging and itchy, and irritated looking where the sun got it. I have been so careful to not let it get to this point for years and only the steroid could knock this out previously. So I'm fighting with that solution while applying lots of metrocream and vaseline, cool compresses and using my handheld RLT device, vowing to be more careful in future. And yet, while I acknowledge this, I rebel too and I will forget the consequences after a while. My therapist told me my forgetfulness was a coping mechanism, otherwise I would become overwhelmed. I buy that.

Sorry for the ramble, I wanted to paint a clearer picture of my skin situation. So, if you've managed to wade through all that, is there a possibility that I will have 'normal' skin if I follow the treatment?

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Corinna | GFAi [1]. Wheldon Protocol: 4–8/08. Can't kill the yeast.

I'm pretty sure you will see some significant improvments but you might have to go through hard times to get there.

Michèle (UK) GFAi [1]: Wheldon CAPi [12] 1st May 2006. Daily Doxyi [30], Azi MWF, metroi [10] pulse. Zoo keeper for Ella, RRMSi [31], At worse EDSSi [32] 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

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Michèle (UK) GFAi [1]: Wheldon CAPi [12] 1st May 2006. Daily Doxyi [30], Azi MWF, metroi [10] pulse. Zoo keeper for Ella, RRMSi [31], At worse EDSSi [32] 9, 3 months later 7 now 6.5 Wheldon CAP 16th March 2006

Hi Corinna,

I am very sorry for your skin troubles.  When I read you had a reaction to the aloe I was wondering if it was acting as an anti bacterial.  It sounds like & would be logical (I don't know about scientific) that you have the CPni [7] in your skin.

Take it slow with the treatment & don't overdue it!!

CFIDSi [3]/ME 26yrs, FMSi [4], IBSi [5], EBVi [6], CMV, Cpn, chronic insomnia, Lymes, HME, Natural HRT peri-M, NACi [8] 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#10 1000 mg 3 days & 750mg 2 days, 5-17-8

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CFIDSi [3]/ME 32 yrs, FMSi [4], IBSi [5], EBVi [6], CMV, Cpni [7], H1, chronic insomnia, Lymes, HME, Natural HRT peri-M, NAC 3 gm, Full CAP 6-2-08, all supplementsi [9] +Sea Kelp, Chitosan Pulse 16 1-4-09 1gm Flagyli [10]/day-3 days

Hi Ruthless1,

I will take it slow, I learned a good lesson this weekend. I have been confused by my body's reactions for so long. I am excited about CPni [7] on the skin, and in the gut, and everywhere else!

I feel hopeful and it has come at a good time. I've ordered the book "The Potbelly Syndrome" that was mentioned in another thread. I am ready for a life change, and will see this as an opportunity to practice the patience I lack in many things.

Thank you for your encouragement and support.

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Corinna | GFAi [1]. Wheldon Protocol: 4–8/08. Can't kill the yeast.

Corinna,  When I was a very young child, there was a younger boy with a very drastic skin disorder on the cul-de-sac where I lived.  His family kept to themselves, and we only caught rare glimpses of him.  Your description of your illness makes me reflect on how lonely his childhood must have been, and I wonder what his adult life has been like.  Thank God you have a caring husband.

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi [20]).  CAPi [12] since August 06, Cpni [7], Mpn, B. burgdorferi, systemic candidiasis, EBVi [6], CMV & other herpes family viral infectionsi [21], elevated heavy metals, gluten+casein sensitivity. 

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Joyce~caregiver-advocate in Dallas for Steve J (SPMSi [20]).  CAPi [12] since August 06, Cpni [7], Mpn, B. burgdorferi, systemic candidiasis, EBVi [6], CMV & other herpes family viral infectionsi [21], elevated heavy metals, gluten+casein sensitivity. 

Joyce, it is isolating. I work from home and have never met most of my clients. I am considered a bit eccentric by my neighbours because of my attire, which they do not realize is a requirement and not a fashion statement. Skin conditions are poorly understood by doctors and many folks have difficulty feeling comfortable around someone who looks so obviously uncomfortable. It affects every facet of my life, and being a young person that looks different can be very challenging. I have no parents or siblings in my life, they have all left me behind because I was too different. I was easy to marginalize. I get very sad sometimes, but I think it has made me stronger, I believe it taught me empathy and compassion, and ultimately made me a better person. My husband loves me from the inside. I like to say I've earned him. :o)

I know it may seem selfish, but I like to think someone is looking over me, because so much in my life is very good. It is balanced. I just need to look really hard to see the good that's there sometimes!

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Corinna | GFAi [1]. Wheldon Protocol: 4–8/08. Can't kill the yeast.

Corinna,  Apart from organically caused depression, happiness is a decision, a chosen attitude.  You must have figured that out a long time ago.  And someOne is watching over you; it's ok that you sense it.  Glad you joined us.  Peace be with you.

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi [20]).  CAPi [12] since August 06, Cpni [7], Mpn, B. burgdorferi, systemic candidiasis, EBVi [6], CMV & other herpes family viral infectionsi [21], elevated heavy metals, gluten+casein sensitivity. 

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Joyce~caregiver-advocate in Dallas for Steve J (SPMSi [20]).  CAPi [12] since August 06, Cpni [7], Mpn, B. burgdorferi, systemic candidiasis, EBVi [6], CMV & other herpes family viral infectionsi [21], elevated heavy metals, gluten+casein sensitivity. 

Joyce, I thank you for your kind words. I am very happy to have found this place, and warmed that it is filled with kind and generous people like yourself.

Kind regards,
Corinna

 

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May 2008. NACx1200mg, D3x2000mg, B12x1000mcg. Allergies, chronic inflamation, eczema, long-term steroid use, sinusitis/cysts, BL/TN, FM, CF, arthritis, rosaceai [16].

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Corinna | GFAi [1]. Wheldon Protocol: 4–8/08. Can't kill the yeast.

3rd weekend with supplementsi [9].

Beginning with supplementsi [36] is prudent. I have a small glimmer of what is to come. However, because of my body's all over the place behavior on any given day I am not sure of what is caused by NACi [8] or what is just me being me. I do believe that I feel better for this time of year though. I started the B12 well over a month ago and that alone has been beneficial. I feel the NAC in my chest most days. I also have incorporated a Nasal LLLT device [37] which may be helping my sinus symptoms. I have not had a nose bleed all spring and my nasal lining is not raw (my breath is a bit better too, much to my relief!).

After spending NAC weekend one in bed with flu-like symptoms, the second weekend went really well but I over did it, and Monday I began to vomit and my gums were bleeding -- I was overcome with fatigue and weakness and took to my bed for another day-and a half. During this time no NAC for 2 days, but continued the B12 shots and SL D3. I resumed the NAC on Wednesday and upped the dosage to 1200mg, but took it at bedtime so I could miss out on the nausea. It worked well.

This weekend has been good and steady. So, in the spirit of progress, I plan to up the dosage again and have taken 1200mg with lunch. I've got no stomach ache or any reaction at all. If I can handle it well throughout the day I will take my regular dosage tonight. Tomorrow I will take just 600mg mid-day in case I have any reaction. I've got huge deadline looking and cannot have downtime. But if by Friday I can comfortably take the 600/1200 split then on Saturday I will commit to 1200x2 going forward.

I have ordered the ABXi [25] for CAPi [12] and will follow the Wheldon Protocol, to the T. I'll post again when that arrives or anything changes. This blog concept is helpful, I'm hoping I can track my progress and so have an accurate depiction of gains.

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May 2008. NACx1200mg, D3x2000mg, B12x1000mcg. Allergies, chronic inflamation, eczema, long-term steroid use, sinusitis/cysts, BL/TN, FM, CF, arthritis, rosaceai [16].

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Corinna | GFAi [1]. Wheldon Protocol: 4–8/08. Can't kill the yeast.

Continued good luck, Corinna!   Remember, slow and steady as she goes.  And be sure to keep up the anti-porphyriai [26] measures.  It can really sneak up on you...

On Combined Antibiotic Protocol for Cpni [7] in Rosaceai [16] 01/06 - 07/07, On Vit D3 + NACi [8] since 07/07 and daily FIRi [17] Sauna since 08/07

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Treatment for Rosaceai [16]

• CAPi [12]:  01/06 - 07/07
• High-Dose Vit D3, NACi [8] & FIRi [17] Sauna Only:  07/07 - 11/08
• Intermittent CAP, High-Dose Vit D3:  11/08 - Present

Thanks Red. I'm going to give that special attention. The trick will be paying attention to my reactions, I incidently register them and then forget and motor ahead regardless. This will change my paradigm.

I've got a sticky on my work computer monitor which says:

An ounce of patience is worth more than a pound of brains.

It is something I need reminding of, often. This new approach at wellness will be an excellent opportunity to take that good wisdom to heart.

--

May 2008. NACx1200mg, D3x2000mg, B12x1000mcg. Allergies, chronic inflamation, eczema, long-term steroid use, sinusitis/cysts, BL/TN, FM, CF, arthritis, rosaceai [16].

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Corinna | GFAi [1]. Wheldon Protocol: 4–8/08. Can't kill the yeast.

Too funny!

You know, paying attention is a good part of the trick, but the problem is that once you are under a full-on "attack" of secondary porphyriai [28], you may not really have the faculties to make any sense of things, unfortunately. You may feel extremely cranky, argumentative, depressed, etc, and as you've probably seen on some of the blogs here, you may not "want" to hear at the time advice that is obvious to those of us who are not "under the influence" of the secondary porphyria at the time.

Print Michele's excellent page on reactions and remedies out, and place it somewhere where you can read it daily, and be sure to go over it with Tim so he can help you identify your reactions. Otherwise you may not recognize them at the time:

http://www.cpnhelp.org/reactions_and_remedies [39]

It actually can be quite a scary experience, trust me so it's probably best to try to figure out how best to manage these reactions for yourself personally early in treatment. The binding agents like charcoal seemed to make things much worse for me although it seems to help most. Give it a try to see how it works for you.

Drinking lots of water, eating tons of starchy carbs (whole wheat bagels for breakfast, sandwhiches without much red meat at lunch, pasta a dinner) and avoiding drug, food and herbal triggers of porphyria seems to help tremendously too for me personally as does eating and drinking water often during the day, taking glucose tabs, avoiding over exertion and using the FIRi [17] sauna regularly. I've found that if my urine doesn't always run absolutely clear, I'm going to pay for it later...

Also, post a blog regularly to tell us how you're feeling and we'll try to point out the what may appear more obvious to us than it would to you while you may be "under the influence"...

Most of all though, best of luck! I'm hoping you experience some good recovery fairly soon...

On Combined Antibiotic Protocol for Cpn in Rosaceai [16] 01/06 - 07/07, On Vit D3 + NACi [8] since 07/07 and daily FIR Sauna since 08/07

___________________________________________________________

Treatment for Rosaceai [16]

• CAPi [12]:  01/06 - 07/07
• High-Dose Vit D3, NACi [8] & FIRi [17] Sauna Only:  07/07 - 11/08
• Intermittent CAP, High-Dose Vit D3:  11/08 - Present

"extremely cranky, argumentative, depressed, etc,"

You been talking to my husband?

Tim is also reading up on the treatment too, and paying attention to the side effects. We're with each other 24/7 and can call things when the other is unaware. It's a nice buddy system.

I've got Michèle's "Reactions and Remedies" page as a bookmark and have talked to my pharmacist about bringing in what they don't regularly carry.

The diet change will be a treat! I'm an atypical celiac and a very reactive eater. I would love to eat pasta (with cheese please!) I'm going to be traversing the dietary path as part of the journey anyway, so incorporating forbidden foods at the onset may be a good means to measure my improvements. I'll have my doxepin, hydroxyzine and benadryl at the ready for the all over body hives! (I'll ensure none of those are a problem with the ABXi [25] first). I harbour a deep hope that I will rid myself of food allergy with this treatment. I have read otherwise in some folks journals here, but I will hold onto my hope anyway.

--

May 2008. NACx1200mg, D3x2000mg, B12x1000mcg. Allergies, chronic inflamation, eczema, long-term steroid use, sinusitis/cysts, BL/TN, FM, CF, arthritis, rosaceai [16].

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Corinna | GFAi [1]. Wheldon Protocol: 4–8/08. Can't kill the yeast.

 

Sounds like a great plan! Keep us posted...

 

On Combined Antibiotic Protocol for Cpn in Rosaceai [16] 01/06 - 07/07, On Vit D3 + NACi [8] since 07/07 and daily FIRi [17] Sauna since 08/07

___________________________________________________________

Treatment for Rosaceai [16]

• CAPi [12]:  01/06 - 07/07
• High-Dose Vit D3, NACi [8] & FIRi [17] Sauna Only:  07/07 - 11/08
• Intermittent CAP, High-Dose Vit D3:  11/08 - Present