Getting started

Wow-- the brain fog, been meaning to begin documentaton so I can track progress and it seems I remember at all the wrong times and can't get to it or don't have the stamina at the time I remember either.  

 Really can't remember when "true" symptoms appeared but have always been super busy with career, kids, outside activities and many many stressors.  The stressors increased in 2003 when I lost my job, began work for a bi-polar verbally abusive physcian and put myself in a spiral of deprecating "prove myself" work behavior.  Then add a 13 week horrilbe ICU stay for my mother to finally lose her, other major family issues and 3 miscarriages in 2 years.

 If I had to guess, it probably all began with I got the sickest I have ever been during Thanksgiving week 2 years ago.  I was out of work and spent the week at my in-laws and almost ended in the ER but having friends in the medical industry I got a Zpack called in for me and I recovered slowly.   I would go through periods of feeling like I had a low grade fever, aches and would come home from work to confirm for weeks I held a temp only in the evenings around 99.5 or 99.9.     Tired but running around like a mad woman...45 hr weeks, baseball practice, soccer practice and a gueling competitive cheerleading practice/performance schedule with the kids.  Not to mention my husband was at his wits end with my "laziness" --slept alot on weekends, no interest in sex, lethargic, depressed type of person I was.

 Nov 2006... I've always been a natural approach person even taking 1.5 yrs of training after work to get my MS degree in Oriental medicine heading toward an Acupuncture/Herbalist license.   So I booked an appt with a local ND who did some electro something or other and seemed VERY concerned about my overall immunei system and basic ability to function.  I went on a 21 day juicing/soup type diet with many supplementsi and did feel better but not a  WOW on the feeling better scale.    I saw an ad in a local wholistic magazine for a internal medicine specialist who was a PHD, MD who focused on getting folks off pharmacueticals, working with hard to solve issues like heavy metals/CFSi/Fibro MS etc so I thought...what the heck...he's in my health plan, cheaper than the ND as it's just a co-pay now.

 April 2007...Off I went to Grace Medical Association where I med Dr. Smart Idemudia (yes, that's his name but he goes by Dr I).   He was a calming factor and began by really listening to me.  Since I had already been diagnosed with low Thyroid and put on Synthroid which lasted 3 days due to the crawling sensation...(I went to natural supplementsi after that with not much luck), he put me on Armour thyroid and for six weeks it helped some...the first couple the best then I didn't see much improvement. 

 May 2007...went to dermatologist due to the past 5 or so years having huge cyst like acne form all along my jaw line and while I didn't want to go on antibioticsi I was even more tired of my face and my image.  So I was put on mild antibiotics-Soladyn a new form of Minocycline.

 June 2007...Back to Dr I cause I was feeling worse instead of better, my memory was a joke in my house to everyone including the kids and very upsetting for me.  Luckily it hadn't affected work too badly but I would say something and it wasn't what I had intended to say and couldn't remember things I had just been told.  (hello....now I see, it was the antibiotics working on the EB's and making me feel horrible).   Put on Niacin">i, Co Q 10.

 May 21st...my 15 yr old gets in a fight with her step father and never comes home...moves in with her dad and barely speaks to me since then.  My emotions are very erratic and embarrassing but the additional stress seems to have pushed me over the edge.  Suidical thoughts are common.

 August. 2007...Tons of tests this time for heavy metals, yeast, checking for adrenal function and viruses.  Came back positive for EBVi, adrenals looked good, no heavy metals, white blood cells and NK's very low as well.    I sat and cried in his office as I was happy to have a "something wrong"...made them make copies of the labs so I could show my husband I wasn't making this stuff up and not crazy or depressed only.   Orders' given for more tests.  Told to take NACi.   Didn't know why and didn't go get it and too tired to ask any questions.   Still very emotionally unstable and again, suicidal thoughts very common.

Sept 2007  ...tests for food allergies come back...mustard family and horribly allergic to yeast.  Tested positive for mycoplasma pn. (even while on the antibiotic) but negative for all chlaymadia's, negative for lyme's, my vitamin/enzyme bioavailablity was doing okay so leaky gut wasn't a huge factor, positive for yeast.     Told about this website, put on Nystatin for a month, NAC 1xday for 7 days and then 2xday.  Told me I may or may not have all the other virusus as they are hard to detect and that we would discuss the protocolsi that a Dr. Stratton had that worked and to come here to learn.   Began the Nystatin on Sept 4th and the next two weeks were very flu like aches, out of breath to do any exertion, extreme emotional swings, brain fog and sleep issues.   My first week brought extreme nausea as ell.  Sept 15th was my son's 7th birthday party in our back yard and I must have over did things as Sunday the 16th I was barely able to get out of bed to make it to the couch to veg all day.  These past two weeks have made me realize that walking through Walmart can kick my tail that evening or the next day and I watch what I do or rethink any outings with friends/family as I cannot physically handle it or fear I can't.  I have surprised myself by not crashing at times but I never know when those are.    Got on this website and WOW, information overload but I've studied and learned and read so many things.  I think I understand the "monster" within as best I can and now it's time to kick some axx.   So very much feel like a cancer patient that takes chemo...you know it's going to treat you bad but you take it knowing it's for the best, but thankfully without the toxic side affects or as much.

Sept  24th 2007... for about 2 hours I had a brief window of what I would call the "old me".  I didn't hurt anywhere, my emotional state was one of happiness and I had forgotten what that felt like and it was so liberating.  I overdid but am thankful I got to experience that old feeling of well being and emotional stability.    It was like God showing me "this is you", remember that while you face the upcoming battle.

Sept 25th I added another 600 mg of NAC to the nightly dose.

Sept 27th..it's been two nights of the additional dose and my arms are very heavy and the achy, hard to move limbs and joint pain is back with flu like tiredness at night but not good sleep...gets worse as the day progresses.   I might be pushing things but I wanted to be at a higher level of NAC before my next appt in early October as I'm pretty sure we'll begin Doxyi then.

The way I feel changes so dramtically from day to day I didn't expect so I begin this blog to track my progress and journey down this path.   Very thankful for this community. 

 

Lisa--Aug 07 Positive for EBV, Mycoplasma P., CFS/FM   3 weeks into NAC 1800 daily/Nystatin/Solydn/Armour Thyroid/Co Q/Niacin/

Comments

we are the best, we are the

we are the best, we are the MAD CAPPERS!!!

CFIDSi/ME 25yrs, FMSi, IBSi, EBVi, Cpni, (insomnia - melatonin">i, 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<

I don't know what makes this

I don't know what makes this community so supportive... I don't think I have ever experienced anything quite like it before and that in itself is exciting, plus you never know what kind of clever word repartee you a likely to come accross which kind of makes things interesting.

Maybe it is the pioneering spirit that engenders this feeling of camaraderie and we are all in this together attitude....

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

Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse.

Humph to you Jim!  I was

Humph to you Jim!  I was going to say that I think you need some new glasses but instead will just say that I hope eveyone takes note of what I said this time about what infectionsi are catching.  This comes from my doctor's mouth, after all.............Sarah
  
An Itinerary in Light and Shadow  
Finished Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still slowly improving with no exacerbation since starting. EDSSi was 7, now 2, less on a good day.
Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

 Sarah- I don't think any

 Sarah- I don't think any of these infectionsi are cute. You artists have such a weird viewpoint. Humph!

 Forumnots- When i read your start up, and Lynda's progress, and Jeaneroz hitting a 6 month mark, I'm filled with gratitude for the community that keeps developing here. I'm so happy you found us, and love the mix of 'old hands' and those in the thick of it all helping each other out. Quite a phenomenon, including artists who think infections are cute. Oops. Acute. My bad...

CAPi for Chlamydia pneumonia since 11/04. 25yrs CFSi & FMSi- Currently: 200 Doxycycline, 500mg MWF Azithromycin, Tinii pulses.

 

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

Rica,  Your wonderful

Rica,  Your wonderful statement about falling from the cliff and being rescued from the ledges rings so true to the experience of dealing with these illnesses and being rescued by this treatment and not to mention the courageous doctors who are using it and everyone here who shares and advises.  I have been "rescued" several times by people here whether it was just encouragement or suggestions of how to better use the protocol which was a life saver for someone being treated by a "Newbie" Doctor.  The ultimate rescue will be getting my life back which I completely expect to do because I have experiences like yours and Sarah's and Astrodiana's and several others to see what I have to look forward to.  I feel like I also was heading for an early death. 

Lynda- ME/CFSi, Fibro, IBSi, Hypothyroid, Lyme, CPNi, Diabetus Insipidus(DI).  Stratton Protocol 8-06; Daily: NAC 2250mg, Doxy 200mg, Flagyli pulses 1500mg for 5 days 500 mg- 2 days, Azith 250 mg MWF,LDNi,Armour Thyroid, Klonopin, Vasopressin

Lynda- ME/CFSi, Fibro, IBSi, Hypothyroid, Lyme, Cpni, Diabetus Insipidus(DI).  Stratton Protocol 8-06; Daily: NACi 2250mg, Doxyi 200mg, Flagyli pulses   1500mg- 5days-every 3 weeks,

Besides which, only acute

Besides which, only acute infectionsi are catching, not chronic ones, so don't worry!..............Sarah   
An Itinerary in Light and Shadow  
Finished Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still slowly improving with no exacerbation since starting. EDSSi was 7, now 2, less on a good day.
Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Lynda, reading your letter

Lynda, reading your letter to Lisa made me serenely happy. Yes, it is a long, hard road but every cliff we fall from has a ledge and we get rescued. If it were not for this trek (sometimes to hell and back - and that is OK) I would certainly be dead or very close to it, with no hope of coming back. This is so amazing that I still get goosebumbs every single time a post like yours and Lisa's comes by. Thank you -

 

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 46 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.&am

Don't worry about infecting

Don't worry about infecting anyone. Seventy percent of the population, or better, has been exposed to cpni by age fifty. First, you worry about getting YOU better. Then, if there are signs, or if you have him tested and it shows positive, you are able to do a mini-protocol and guide him through it in your newly-healthy state.

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

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

Lisa - I totally understand

Lisa - I totally understand your elation in being diagnosed with a "real" illness.   My first big moment of elation was in 1991, when after being pretty sick for 2 years and mildly sick since college in the seventies, when I was dagnosed with CFSi.  After scores of tests and doctors and no one could find anything  clinically wrong with me, I had been told I was depressed.  The CFS diagnosis soon became very problematic though in there were not many docs who believed it and there were no definite treatments for it.  My only answer was to quit teaching and go on disability which I remain on. I have tried many treatments and supplementsi but obviously I wasn't going to get well with these bacterias raging in my body which I didn't know I had. My biggest moment of elation was testing positive to Lyme and Cpni.  Now that was something we could treat and I had already found the treatment.

I really can't tell you how excited I was to hear your story about Dr. I helping you get diagnosed and referring you here. I know that I already said that in my other post but it is a really important issue for me.  When I first found this site, I was determined that instead of searching for a doc who already used the CAPi as many people try to do, that I was going to work with Dr. I.  He already had proved to be very open to alternative treatments, so I thought I had a good chance.  My reasoning was that I knew he had several CFS and MSi patients and that he was in a good central location to be available to a lot of people.  I think it is important to spread the news of this treatment to other doctors and it became my goal to sell this to him. I thought he would be able to help many other people if he learned about this treatment.  I have not had any confirmation that he was trying this protocol on anyone else yet besides me.  It has been a rocky road for me and a very slow process because I have been sick for so long and had become in very poor health.  So I didn't know if he would wait until we saw major improvements with me before he tried it on anyone else.  Now I wonder how many other patients he is trying this on.  I am way too curious.  My kids tease me about it.

By the way I use an excellent Nutritionist in Denton who has helped me with my supplementsi and making sure I was taking what I needed to support my specific health problems.  She tests for problems so she knows what areas need to be supported.  I take the recommended supps from this site and a few extra for other problems she has found.  She is also very picky on the brands to be used  and the forms the supplement is in to make sure they are readily absorbable and very high quality.  It took out all the guess work on the supps.  Although, you may not need that support with the studies you have done in natural medicine yourself.  If you want that info just PM me.   I wonder if you found Dr. I's info in the local magazine "Health Around The Corner."   She has many articles in that.

There are many other people more qualified than I to address the infectious  possibilities of this illness.  So I will leave that to them.  I am so glad that the Melatonin">i helped your sleep.  That is so important in healing and functioning.  It also helped me and was able to stop medications I was taking for sleep.  I had taken Melatonin before with some help but not when I went into a really bad relapse.  Now being on the CAP and using the melatonin has made a huge difference.  It is one of my biggest improvements and it came early in the treatment.  My pain has greatly improved also except during Flagyli reactions.  I also have started finally to have some relief in brain fog though it still returns during die-off reactions.  It actually got worse when I started the CAP.  I think I have a huge amount of bacteria in my brain based on my symptoms before the CAP and the reactions I have had to the abxi.  This is not an easy road you have chosen, but I am convinced it is the right one.  I expect to be on the CAP for several more years, but you may not need to be since you haven't been sick as long.  OK, I have rambled enough.  Good luck and enjoy the wonderful and often humerous people on this site.  It is good to laugh when you are so sick. 

I am glad you could follow in my footsteps, but hopefully you will forge your own path of healing and it will be easier for you and others as Dr. I becomes more proficient in using the CAP.  It is definitely a learning process.

Lynda- ME/CFS, Fibro, IBSi, Hypothyroid, Lyme, CPN, Diabetus Insipidus(DI).  Stratton Protocol 8-06; Daily: NAC 2250mg, Doxy 200mg, Flagyl pulses 1500mg for 5 days 500 mg- 2 days, Azith 250 mg MWF,LDNi,Armour Thyroid, Klonopin, Vasopressin

Lynda- ME/CFSi, Fibro, IBSi, Hypothyroid, Lyme, Cpni, Diabetus Insipidus(DI).  Stratton Protocol 8-06; Daily: NACi 2250mg, Doxyi 200mg, Flagyli pulses   1500mg- 5days-every 3 weeks,

Thank you everyone for the

Thank you everyone for the welcome and it is so very reassuring not only did I find a fantastic dr but that I'm not imagining all these things and I"m not crazy.  

 I didn't think to ask about this but now I'm worried that I can infect my family, expecially my son.  Well okay, my husband to but I can cycle with him but it worries me that my son is only 7 and I could infect him.   Anyone know anything or been told.

 Lynda...It could have very well been Dr Stratton that Dr. I told me about...heck the brain fog was so bad during that visit I couldn't remember past 10 seconds, I only remember the website, so I trust from your posts that it was Stratton now...but whomever..I'm glad you have forged the path and he has seen the results so I can follow in your footsteps.

I got all my supplementsi in the mail last night and took my Melatin and man on man...haven't slept that sound in ages!   Celebrate the little victories! 

Lisa  -Positive Aug 07 -  Candida/EBVi<i</Mycoplasma Pnemoniae/CFSi/FM, low NK cells.   3 wks into NACi 1800 mg daily/Nystatin

Aug 07 -  EBVi<i</Mycoplasma/CFSi/FM, low NK cells. CAPi 10/3 Amox 500mg 2x/NACi 1200mg.&nb

Hi Lisa, I'm pleased that

Hi Lisa, I'm pleased that you have the support of an understanding doctor... You certainly sound as though you need it.   Take heart that the first thing that most people report gets better for them is the brain fog.   When you are thinking clearly again everything will fall into place and you will once again feel as though you are on top of things.   I hope your husband is starting to understand your problems, it is bad enough feeling lousy without also feeling guilty about it...

We will do our best to help you along the road.   This is what this community does best, that and provide information.

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

Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse.

Lisa, welcome to our oasis.

Lisa, welcome to our oasis. We are so happy to share and soon you, too, will be contributing to the information-gathering. And how wonderful about your doctor - and his being Lynda's also - well, only on cpnhelp! And, Ruth, you are so noticably better that I just have to congratulate you. You may still be cold, but if you can hang on, you're going to become normal. (I am changing my opinion about that word being dull.)

 

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 46 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.&am

thanks for the encouragement

thanks for the encouragement Rica...

yes, it is interesting, I have been trying to get my Vit D up & I am hot flashing with sweat alot.  So, is it because of the D or is it because I am on the road to menopause.  That with my temp falling dramatically from time to time recently has been somewhat interesting.

Blessings All

CFIDSi/ME 25yrs, FMSi, IBSi, EBVi, Cpni, (insomnia - melatonin">i, 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<

Welcome to our site, Your

Welcome to our site,

Your story is one that is familiar here making this a great place to be for support.  Feel free to message whenever you have the energy, someone from somewhere in the world is here.  When you have a chance, you can add a signature to your name & then others will know the basics of what you are dealing with.

I am so happy you have a great doctor, you are indeed blessed.  Isn't it great when you have a whisper of who you used to be, it gives us great hope.  We are going back to the land of the living.  I for one can't wait for the brain fog to go away; the ringing in my ears has been crazy especially this week.  Might have the Cpni in the brain.  Remember, that you may not have tested positive this time for Cpn because it is the master of hiding inside our cells!

God Bless you on your journey back.

take your time & resist over doing things (I know, it is REALLY hard!)

Ruth

CFIDSi/ME 25yrs, FMSi, IBSi, EBVi, Cpn, (insomnia - melatonin">i, 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<

Wow, do you sound like a

Wow, do you sound like a classic cpni case! Especially the 'sicker than I've ever been' episode pushing you over the edge. Seems we all had one of those and Dr. Wheldon maintains that's the trigger. I am SO happy for you to have found the antibiotic protocol. It sure saved my life and it will save yours, too. Just be patient and hang onto those 'whispers of your old self' as Katman calls them. The whispers get louder and longer and eventually you are YOU again.

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

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

Hello Lisa, welcome to the

Hello Lisa, welcome to the land of two steps forward one step back. I had a  very similar experience to you. About 17yrs ago my life was just one long episode of stress. I became sicker and sicker with all kinds of nebulous symptoms and then had the dropping over an edge feeling. Turns out it was the start of MS.

Found this site recently and have been on the CAPi since July. The feelings you describe are exactly the same as the ones I had, to a greater or lesser degree. Yes I've heard the 'whispers of my old self' and they come and go but all reports say once they show themselves, they return. So now you've found this, keep it up.

Robert - MS for 16yrs. CAP since Jul 07, NACi 2400mg, Doxyi 200mg daily, Azith 250 mg MWF.

MSi for 20yrs. CAPi since Jul 07, NACi 2400mg, Doxyi 200mg daily, Azith 250 mg MWF, Flagyli for 4yrs.

Welcome Lisa, I have been

Welcome Lisa, I have been reading your prevous posts.  I resisted seeking diagnosis until I found a provider that I believed would listen to me when I said that I was unrelentingly fatigued and would look beyond the current popular idea that fatigue = depression = anti-depressant meds as the first course of action.  Hoping to hear more as you continue on this healing journey. There is a wealth of support and solid information here.  My brainfog is beginning to clear, learning about porphoria and it mental and or emotional effects has been so helpful to my personal understanding and beyond learning about it folks have suggestions that can actually help reduce it!  Life is improving incrementally with yes some setback, however prior to starting CAPi it was mostly getting only harder for me.  I am looking forward to getting my life back!  This is a good road to be on! 

Louise, USA, Northern New England. CPni, Bb(Borrelia B., Lyme,) CFS.     Started CAP 6/24/07 Doxy400, NAC1200.  Currently 9/24/07, Doxy 200 mg, NAC 1200 mg.

  • CAPi(TiniOnly): 06/07-02/09 for CFSi<
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDNi 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support
  • <

Forumnots - Welcome to our

Forumnots - Welcome to our community.  I am pleased to be the first one to welcome you for a couple of reasons.  First, your story is so much like mine except that you have found the right help much earlier than I.  Second ,and most important.  We have the same doctor.  You are new to all of this but we avoid mentioning Docs names who are using the CAPi to protect them.  We pass Docs names on to others using a Private Message.  But I am actually glad that you did mention his name because I wouldn't have known otherwise.  Hearing your story about how Dr. I is treating you makes me very happy, because I was his first patient to try the CAP on.  I found out about this site on a CFSi discussion page and when I read everything here about Cpni, I knew I needed to be tested. I was already being treated by Dr.I for CFS for about 6 years now.  We already knew I had chronic recurring infectionsi for EBVi and CMV. I also found out about Igenex Labs to test for Lyme.  Dr. I had just also found out about them and had just ordered the kits.  So we tested for Mycoplasmas, Cpn and Lyme.  I had very high titers for Cpn and was positive for Lyme.  As people on this site can confirm, it has been a long year working with Dr. I as we figured out this protocol together.  This site was a life saver for me because they helped me and Dr.I keep on track when mistakes were made, such as ramping up too fast on the abxi ect. I am finally on the protocol as it should be and I could tell that he had been reading the info on this site, because he was more informative about what was causing my symptoms and he knew what I needed to take next without me asking for it as it was in the begining.  Kudos for Dr. I in having an open mind to this protocol.  I am so happy to see him referring patients to come to this site.  It is interesting that he used Dr. Wheldon's name in referring to this protocol as Dr. I actually talked to Dr. Stratton who originally designed this protocol and did the initial research.  Dr. Wheldon is a wonderful doctor who saw the merits of this protocol and started using it for MS patients.  Their protocolsi are very similar as you can see.  Jim who started this site was able to give me Dr. Stratton's number via PM so that Dr. I could call him and get all the info he needed to feel comfortable in starting me on this protocol.  You can read my personal info by clicking on my name.  I have not updated my story since treatment, it is the original history I wrote when first coming here.  You can also read my blogs which will give you info on how my treatment has progressed.  As Dr. I has probably already told you and others here will probably chime in also, your reactions to the NACi are normal as the EB's are dying and creating endotoxinsi.  Keep posting.  You will find this site to be extremely helpful with lots of little tips to help you with the symptoms.  I am so glad you have gotten help early instead of having your whole adult life be lived with sickness as I did.  I will write more to you later in a PM.  Look under your name on the left side of the page in my inbox.  PM's will be there.  Go to My account  and click on edit and you can create a signature line.

 Lynda- ME/CFS, Fibro, IBSi, Hypothyroid, Lyme, CPN, Diabetus Insipidus(DI).  Stratton Protocol 8-06; Daily: NAC 2250mg, Doxy 200mg, Flagyli pulses 1500mg for 5 days 500 mg- 2 days, Azith 250 mg MWF,LDN,Armour Thyroid, Klonopin, Vasopressin

Lynda- ME/CFSi, Fibro, IBSi, Hypothyroid, Lyme, Cpni, Diabetus Insipidus(DI).  Stratton Protocol 8-06; Daily: NACi 2250mg, Doxyi 200mg, Flagyli pulses   1500mg- 5days-every 3 weeks,