qkcam, this may be your own reaction to Doxyi [1]. My husband still gets nauseated every day with the meds but has learned to eat something. Michele, I believe it was, said earlier that you have to learn to manage this. The beginning can be a person's own trial (hell?). My disease is MSi [5]. I spent my first nine months or so in my version. I feel I am prattling on while you are suffering, but I am trying to communicate the realization that we all come to - that this is part of the beginning if you are carrying a heavy load. It appears that you are.

 

Rica PPMSi [6] EDSSi [7] 6.7 at beginning - now 2. Began CAPi [8] Sept, 2004 with Rifampin 150 mg 2xd, Doxy 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli [9] total 48 pulses NC USA

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Rica PPMSi [6] EDSSi [7] 6.7 at beginning - now 2. Began CAPi [8] Sept, 2004 with Rifampin 150 mg 2xd, Doxyi [1] 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli [9] total 55 pulses LDNi [10] Rifampin 8/08 again NC USA

i do have a large bacterial count in my system.. how long does it last, the beginning that is?   I can not function while the pain is there as it takes over my whole being.   Maybe i am a bigger chicken than most and have a lower tolerance for pain.    i feel bad rambleing on about this -   

 

is there a way to tell if it is the "die off" vs  bad side effects of the medication? 

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EBVi [3];hvs6; CPNi [2] igGi [4] 1024; HEP C in remission;high lead and mercury counts; medically senstive; medication. 2.5mg lexpro 3 x a week; vital ingreidents multivitamin;nadh;was taking corvalen Dribose, but i coulnd't sleep although it helped with energy.<

Qkam I just posted on your other question thread. Die off is the desired effect of antibioticsi [11]. It sure felt very bad to me when I began treatment back in June 2007. If I could have seen another way around it I might have tried but intracelluarly bacterial infectionsi [12] are persistent and only multiply over time.  I said I had writhing pain from doxyi [1] with out a full meal. You know the type that all I could do was rock myself back and forth until my stomach emptied and the medication moved on.   This is why I had to eat more than bread or just a large amount of water  with the dose.

I often tell this story,then other say they only needed large amount of water or piece of bread. For me is was protein and fat and carbohydrate that was necessary and still is to take my doxy.

Louise

CFSi [13]/ME.CPnPositive.BbPositive.

Started6/24/07WheldonCAP.OnDoxy, Roxi,

2/3/08TiniPulse#4DayFiveCompleted.

BeginningToNoticeTheEffectsNow.  Cholestyramine1packetBedtimeforPorphoriaandDie-offSymptomsOf Fatigue,Brainfog,MoodDisturbances,BalanceFromApopt0sis.

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Louise  CFSi [13], CPN+/Bb+,Wheldon CAPi [8] 6/07, Cholestyramine 1-2 pks @ HS for Porphyriai [14] & Endotoxinsi [15] PRN, Doxyi [1] 200daily, Roxi 300BID, Tini500BIDx14day pulses,VitD3-10,000IU, Iodoral 12.5mg, {S.O.D.3/QD[KAL Brand], Pyruvate 3.75G, SAM-e For Energy Support

Thanks Louise,

I dont know what I'm doing wrong.. I am eating quite a bit when I was taking the doxyi [1] I would eat lunch, which is usually some type of carb/protein and I'm sure fat.. and same with dinner..  I was fine untill I added the Lauricden last wednesday evening.- I woke up thursday on fire and it has lasted untill -  yesterday.    I stopped the Doxy on friday and still very sick on saturday.  - 

maybe my liver is too damaged from the Hep C to handle so many medications at one time? 

How do you guys function with this die off stuff?   I could hardly concentrate at work and then my boss yelled at me.. which didn't help.   anyway I took a sick day today, becasue i'm still not feel very well.   mostly alone and afraid.  My family is 2000 miles away in Indiana I'm in trying to live in costly california.   thanks

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EBVi [3];hvs6; CPNi [2] igGi [4] 1024; HEP C in remission;high lead and mercury counts; medically senstive; medication. 2.5mg lexpro 3 x a week; vital ingreidents multivitamin;nadh;was taking corvalen Dribose, but i coulnd't sleep although it helped with energy.<

qkcam, I was born in Corydon, IN. where my family lived for 150 years. We will try to keep talking until you are beyond this. If you read David Wheldoni [17]'s "Medicine as Fashion" you will see in the comments a picture of my great grandfather and a page from his notebook. Keep trying and you will make it. California is a beautiful state - thoug I am speaking from the standpoint of one who moved to the West Texas desert from Indiana!

 

Rica PPMSi [6] EDSSi [7] 6.7 at beginning - now 2. Began CAPi [8] Sept, 2004 with Rifampin 150 mg 2xd, Doxyi [1] 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli [9] total 48 pulses NC USA

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Rica PPMSi [6] EDSSi [7] 6.7 at beginning - now 2. Began CAPi [8] Sept, 2004 with Rifampin 150 mg 2xd, Doxyi [1] 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli [9] total 55 pulses LDNi [10] Rifampin 8/08 again NC USA

i spoke to my doc and he said he wasn't sure if the stomach problem was becasue I can' t tolerate Doxyi [1] or if it was Die off..  he going to have me try something called Doryx he said it is anterrior coated so it wont mess up the stomach~  I hope it helps!.   

 califonia is a beautiful place and becoming more and more crowded and expensive.  I live in Oakland and not a very good neighborhood.  I pay 560 an month so I can have a yard for my dog.. I like in a converted garage with drug dealers on the corner-  but it is the best deal in town.  I could probably spend more for rent but

a: I'm still in a midwest state of mind.. heck i could buy a whole house for 800 a month!! 

b: I spend alot on suppliments and expensive doc.

I drove through parts of texas on my way to CA 13 years ago.. I liked it. I remember "THE BIG TEXAN STEAKHOUSE"  I would watch the billboards as they passed counting the miles to the "Worlds Largest Steak"    I'm not sure if you are in that part of Texas or anywhere near, I think it was Ameriallo. 

You all have good puncuation skills on the keyboad !  :)

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EBVi [3];hvs6; CPNi [2] igGi [4] 1024; HEP C in remission;high lead and mercury counts; medically senstive; medication. 2.5mg lexpro 3 x a week; vital ingreidents multivitamin;nadh;was taking corvalen Dribose, but i coulnd't sleep although it helped with energy.<

Doryx was recommended to me by Lyme Support folks.  I decided that I would find a way to work with straight doxyi [1] because it is less expensive.  I have my routine that works for me however I know that folks that can gt Doryx do well on it from a stomach symptom perspective.  I think it is still on patent and quite a bit more money.  Looking forward to your sharing how  it sets on your stomach.  When do you think you will start it?

Louise

CFSi [13]/ME.CPnPositive.BbPositive.

Started6/24/07WheldonCAP.OnDoxy, Roxi,

2/3/08TiniPulse#4DayFiveCompleted.

BeginningToNoticeTheEffectsNow.  Cholestyramine1packetBedtimeforPorphoriaandDie-offSymptomsOf Fatigue,Brainfog,MoodDisturbances,BalanceFromApopt

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Louise  CFSi [13], CPN+/Bb+,Wheldon CAPi [8] 6/07, Cholestyramine 1-2 pks @ HS for Porphyriai [14] & Endotoxinsi [15] PRN, Doxyi [1] 200daily, Roxi 300BID, Tini500BIDx14day pulses,VitD3-10,000IU, Iodoral 12.5mg, {S.O.D.3/QD[KAL Brand], Pyruvate 3.75G, SAM-e For Energy Support

Doryx.... I posted yesterday(no response) re having gi problems since starting this.  mine have been worse since on Doryx (but possibly caused by not being totally compliant w/my supp's...)

 

 

Jeanneroz ~CPNi [2] 4/2007; HHV6, EBVi [3], CFIDSi [18]/FM- diagnosed: 6/07; IBSi [19], prior kidney infectionsi [12], food allergies, hypothyroid (RAI for Graves in 1998), Adrenal issues; prior bronchitis/sinus problemsi [20]. 200 mg/doxyi [1] daily & 250 mg AZITH M/W/F, supplmnts

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JeanneRoz~CPNi [2] diagnosed & started protocol 4/2007, also HHV6, EBVi [3]. CFIDSi [18]/FM diagnosed: 6/07; 100mg/doxyi [1]/BID ~ 250 mg AZITH M/W/F ~1st Tinii [21] pulse 4/17/08- 1 250 mg. tab for 2 days. Pulse 5: 9/28/08, 250 mg TINI BID, 3 days. Sup

my doc said the outer coating prevents the stuff from breaking down in your stomach.. he said it breaks down later on down the line  - ie  the GI track.  doesn't sound like fun.  I am sorry you have having problems..  I hope it isn't as bad as the stomach problems i had.. if they are..  I really feel for you.    are you able to find any relief?  as people have suggested.. probiotics, digestive enzymes.   I even cooked up some tea from my microbiotic cookbook.   It is Kuzu , with tamari and umbushi plums to help alkalizes.    good luck!  

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EBVi [3];hvs6; CPNi [2] igGi [4] 1024; HEP C in remission;high lead and mercury counts; medically senstive; medication. 2.5mg lexpro 3 x a week; vital ingreidents multivitamin;nadh;was taking corvalen Dribose, but i coulnd't sleep although it helped with energy.<

my doc charged my $90 for a 15 min phone call to say he was going to change the Rx.    I feel a bit ripped off.   that's alot of money!  Does anyone know a doc in the bay area that will take insurance and that will treat this stuff? thanks!

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EBVi [3];hvs6; CPNi [2] igGi [4] 1024; HEP C in remission;high lead and mercury counts; medically senstive; medication. 2.5mg lexpro 3 x a week; vital ingreidents multivitamin;nadh;was taking corvalen Dribose, but i coulnd't sleep although it helped with energy.<

Yes, I am in the same situation with my dr. His requirement is to see me for a full hour once a month in order to give me rx refills and I am welcome to call him if needed but if it's more than 5 min. then it's $75-230 (15min.to 30 min). 

It seems to be a big expense to begin the treatment and until we get a handle on it. I am hoping after I get stabilized on abxi [11] and sort out all the side/die-off effects, I'll end up only with a fixed expense every month. Then it will be more manageable.

At this point I still think this cost is justified b/c prior to this dr I went rounds and rounds within the conventional system for the last 3 years only getting worse and adding new conditions to my list of suffering.

Besides the suffering, I lost work productivity, all my relationships are affected and etc.

This treatment has the end point. So if at the end I'll gain what I lost, I say the expense is justified. I just have to tighten the belt right now in order to cut even more corners than we already have. Right now I am also considering to ask my mom to come and stay with us for a couple of mns while I am going thru this.

Hope we will figure it out.

Nata.

Arthritis, muscle pain & twitching, sinusitis, hypertensioni [22], hypothyroidism Hashi's, restless legs, chronic cough, fatigue. Cpni [2] IgGi [4] (+), CMV IgG (+), HLA B27 (+), ANA (+), Lyme Western Blot results pending. 

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Nata.

CAPi [8] for arthritis, tendonitis, sinusitis, pelvic pain, fatigue and muscle pain. Hypertension, HypoT Hashi's. Lyme (+) and Cpni [2]i [2] (+

qkcam, if you can handle the drive, you could see Dr. Powell in Sacramento. What is it, a 2 hour drive from SF? Anyway, he doesn't charge for just calling the office with a quick question. I live in S. Calif. and have been to see him about three times but now I do phone consultations. These I have to pay for--my insurance doesn't cover it---but at least I don't have to take a whole day to fly up there. And on the topic of die off, it is easy to feel panicky when you feel so rotten. On this treatment I have felt worse than the worst flu I have ever had. And for a long period of time. It really shakes your sense of trust in the healing ability of the body. But be assured, the storms will pass.And better days will come. Send me a private message and I will send you Dr. P's contact info.Just hit the text at the bottom "write to author" Raven CAPi [8] since 8-05 for Cpni [2] and Mycoplasma P, for MS and/or CFSi [13]

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Feeling 98% well and going for 100! Still testing + for Cpni [2] since June '08.CAPi [8] since 8-05 for Cpn and Mycoplasma P. for MSi [5] and/or CFSi [13]. Also EBVi [3] and HHV6 NACi [23], Iodoral, T3, BHRT, Methylcobalamin injections, Nitro patch, LDNi [10] and Methylation supplementsi [24]

hi there kqcam, when you're feeling a bit better, could you do a little description at the bottom, so people can see more what the details of your illness and protocol are, and this will show up automatically every time you post.

it seems you have got some great advice and help here.  it can feel very difficult at times, health issues, money issues, doctor issues, etc but you just have to hang on in there as they say .................

re. doctors - here in the UK i am going to pay for some viral tests soon and a short consultation for the interpretation.  i won't have or pay for anything i consider superfluous to my current needs and dilemmas, or outside my financial limitations.  

At least it seems you are lucky to have confident CAPi [8] doctors like Dr P in Sacramento.  There is no-one similarly versed with CAP treatment for ME/CFSi [13] in the UK, so we just have to muddle along rather (pls feel free to correct me anyone). 

blackfoot

england

 

M.E./CFS 20 years, intermittent.  Wheldon Protocol - Started NACi [23] and supplementsi [24] Sept 2007. Doxyi [1] and Roxy full dose by Dec '07.

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M.E./CFSi [13] 20 years, intermittent.  Wheldon Protocol - Started NACi [23] and supplementsi [24] Sept 2007. Doxyi [1] and Roxy full dose by Dec '07.  First Flagyli [9] pulse January 2008.

Hi there Blackfoot.

There is the private CFS specialist in Bolton, UK called Dr AW.  He is versed in the CAPi [8] and will perscribe the antibioticsi [11] on it.  I still buy mine over the internet from recommended sites though.

Mark 

 

UK Carer of bedridden Severe ME/CFS Feb06. CPNi [2] dx. Apr07. Samento 15 drops per day July07.  2400mg NAC 200mg Doxyi [1] Jan 08.

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UK Carer of bedridden Severe ME/CFS Feb06. Bitten by ticks Summer 04.  CPNi [2] dx. Apr07. Borrelia dx Sept08. Samento 15 drops per day July07.  2400mg NAC 200mg. Doxyi [1] Jan08.  300mg Roxyi [26] Apr08.