"You need to go home and rest" For five years that is the gist of what doctors were telling me. My immunei system must be worn out and needs time to repair. OK, so I rested and rested and got worse and worse. More tests were run -- even expensive heart tests for the out of breath feeling I was in all the time. "You seem to be in good shape" Didn't anyone believe I was really sick?? My husband did. He could see it in my eyes.
I got so sick of paying for no answers, that I quit going to doctors for some time. Other aches and pains crept in. My hair started to fall out of my head. I became very weak. So weak that I couldn't lift a gallon of milk, do laundry, empty the dishwasher and most other household chores. Going to the store was exhausting. I became forgetful and even disoriented at times. I sat around on the couch most of the day; never going up stairs until it was time for bed - a welcome relief. By 8 or 9 in the evening I was frazzled. I couldn't take one more thing. If my kids asked for anything I might snap. I went to bed early to hide.
I heard about chronic fatigue being treated with antivirals. I looked on line and found a doctor who had pioneered in this field and e-mailed him. He responded that he had had good success. I made the trip, was interviewed and all kinds of tests were run. Two weeks later the news came. "You don't have EBVi, you have Lyme disease" I was in total shock, especially since I knew next to nothing about Lyme and had lived overseas until I got too sick to handle the stress of the Mid East.
I was told I needed to be on a picci line right away. Still reeling from the news "you have Lyme" I wanted to go back and ask questions. "How?" It didn't matter. I was CDC positive from Lab corp -- which is pretty hard to get. I was told if I didn't treat it, I would get much worse from here on.
Skipping ahead. I did the 6 weeks of IV Rocephini and then began oral CAPi. Amox, doxyi and flagyli. When my progress was slow, the doctor wanted to treat the CMV infection also in my body. I dropped the doxy and flagyl for my liver's sake and added Valcyte. I did that for about 5 months, at which time I moved to Colorado Springs.
After a few months I hooked up with the remains of the Rocky Mountain Chronic Disease Clinic. The professional that took my case did labs and sent labs to Igenex. At this point (last Fall) I was feeling pretty good. I had gone back to work part time. Nevertheless, I was still very positive for Lyme; and lo and behold I had something called Chlamydia Pneumonia. WHAT?????
Again, I knew nothing about the disease and this one sounded so gnarly that I hated to repeat the name out loud. Flagyl was added to my protocol along with erythromycin that had been added after I was finished with the Valcyte. The long term goal was to switch the erythro to azith and then add INHi. I finally started this protocol in March; beginning with Azith one tab a day for 6 days and then M W F. On April 7th, I started the INH.
It has been a bit of a ride. After I began the Azith I noticed on the M W F I had pings and twinges in my chest and almost a cough. I NEVER have a chest cold. Then came the INH. I herxed! I felt as if I had the flu. The worst lasted a couple of days. I felt kind of like I did when I went back on the flagyl in the Fall. Only it has lasted longer. Some days I feel crummy and some nights when I roll over in bed every thing hurts!! Oh, and I did get that muscled pain in the back like I did when I first started the lyme treatment. I also had stabbing pains in my shoulder the first weekend.
I had blood work done last week. My liver is handling it and my blood count is good. I wonder if the die off goes in cycles like Lyme? I wonder what symptoms are Lyme and Cpni. It is so confusing. I asked my doctor, "Which came first. The chicken or the egg?" He thought is was a good questions. Do I have Lyme because of the CPn or CPn because I have Lyme. Hmmmmm
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Nomad - Welcome ! You are
Nomad - Welcome ! You are way further ahead than most who first post here!
Re the lyme and CPNi infectionsi - I'll weigh in on that one - it's likely you got the CPN first - most people are exposed mutiple times during a normal life span and their immunei systems just "handle" it. First exposures are generally thought to be before age 10.
A few unlucky folks - have other co-infections - viral, lyme other bacteria and/or genetic quirks that make them more susceptible to life altering disease. The perfect storm if you will...
Since most people aren't also borrelia infected (unless they live in
Lyme CT)
, the CPN probably came first . Your bodies immune system may or may not have been able to handle it but the lyme borrelia definitely sent you over the edge.
My husband's doctor feels these two pathogens can be very potent and synergistic together in causing severe debilitating disease.
Glad you are here and you are off to a good start.
Some of the "herx" effects you are experiencing may be porphyriai - something not discussed on the lyme boards. Try reading up on it here and implementing some of the anti-porphyrins and hopefully you will get some symptom relief !
Daisy - Husband on CAPi 5/07. Roxyi, Diflucan round three 4-4, Rifampin, Bactrim DS, Mepron 4-6,
Prednisone,Novantrone, Doxyi, Azithromycin, Flagyli, Minoi___________________________________________________________
Daisy - Husband on CAPi 5/07. "When Going Thru Hell, Just Keep Going", Winston Churchill
Welcome Nomad. Wow! What
Welcome Nomad. Wow! What a story! When we refer to pulses, we mean that we take the medication for a few to several days (that's a pulse), wait for a few weeks, and then do another pulse. You mentioned that you are pulsing azithromycin on MWF. Does that mean you are taking it every other day for a bit and then laying off it for awhile, or are you taking it 3 days per week on a continuous basis? Yes, treating these multiple infectionsi does get confusing. I don't spend any time wondering about the chicken/egg bit---too much mental energy needed for other things. Just knowing that they're all there is enough. I remember some users remarking that they seem to experience 4-month cycles; maybe they will speak up.
Joyce~caregiver-advocate in Dallas for Steve J (SPMSi). CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infections, elevated heavy metals, gluten+casein sensitivity.
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Joyce~caregiver-advocate in Dallas for Steve J (SPMSi). CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity.
Oh, heck, sounds like
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
I take Azith MWF on a
I take Azith MWF on a continuous basis. I edited my blog to avoid that confusion. Thanks.
I too am pretty content to just treat the diseasesi and not worry about the order. But it is interesting. Just considering the fact that I lived in the Mid East so long and fell sick there. Although my original doctor assured me lyme is everywhere (and I have found that to be true through my reading and lyme support buddies) I have often wondered if it was in my system all along. I grew up in Florida and there is a lot of lyme there.
Thanks for your responses.
Welcome Nomad, Have you had
Welcome Nomad,
Have you had a chance to review the supplementsi list in the Handbook. Many of them are designed to help the liver for cleansing support. You should also have the anti - toxin remedies in the cupboard too; they will really help out with the toxins that the nasty CPni leaves behind as you are kicking its butt out the door!
they don't go down without a persistent fight, you are on your way! Best wishes for your journey
CFIDSi/ME 25yrs, FMSi, IBSi, EBVi, Cpn, (insomnia - melatonini, GABA, tarazadone, triazolam, novocycloprine, allergy formula, 3 gm tryptophan), Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse8 750mg 4day,375X1 3-24-8
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CFIDSi/ME 32 yrs, FMSi,
IBSi, EBVi, CMV, Cpni, chronic insomnia, Lymes, HME, Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#13 1240 mg X 3 days 8-7-08> Although my original
> Although my original doctor assured me lyme is everywhere (and I have found that to be true through my reading and lyme support buddies)...
Don't tell that to the state medical board in Texas. See: http://www.standupforlyme.org/about/crisis_of_care.html
Not trying to turn this into a Lyme thread, but the article does shed a lot of light on why doctors here in Texas are so reluctant to prescribe the CAPi.
CAP for M.S. since 8/2007. Currently: 100 mg Dox. (2 x day),
250 mg Zithi (3 x week)ceased 3/2008, 150 mg Roxi (2 x day) starting 3/2008. Seventh pulse metronidazolei completed 4/11/2008.___________________________________________________________
CAPi for M.S. since 8/2007. Currently: 100 mg Dox. (2 x day), 250 mg Zithi (3 x week) ceased 3/2008, restarted 5/2008,
150 mg Roxi (2 x day)starting 3/2008, ended 5/2008, 500 mg Amoxicillini (4 x day) starting 7/2008. Twelfth pulse metrHello Nomad, and welcome to
Hello Nomad, and welcome to the fray.
Arrived here only days ago myself. Also positive for Bb (via IGeneX) and haven't a clue how that happened. Kinda like my third kid...well maybe not exactly like that.
As a fellow Lymie, I'd love to hear your experiences on CAPi. I have been on lots of Doxyi, Samento, and unpronouncable Chinese herbs, and generally feel pretty dang good now. CD57+ suggests that I am cured, and haven't had a follow up Western Blot...but...sadly symptoms don't agree with that conclusion: still have lots of little stupid twitchy stuff. Hence my delving into CAP.
Can't tell you the number of times I heard "...but you look great!" while I felt like crap and couldn't hardly string together a coherent sentence. Sounds like you got the same. If only they knew what it felt like, huh?
Tennessee, USA - Bb positive w/neuroi involvement, suspected CPn
Doxy/Samento/Herbs for Bb 2005-2007
Started CAP 4/19/08 - NACi 2400mg, Doxy 200mg, Zithro 250mg M/W/F
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Tennessee, USA - Bb positive w/neuroi involvement, suspected CPni
Doxyi/Samento for Bb 2005-2007
Started CAPi 4/19/08 - NACi 2400mg, Pyruvate 6g, Doxy 200mg, Zithro 250mg M/W/F, Metroi pulses @ 3x500mg
Its not a chicken and egg
Its not a chicken and egg situation, you just have both, probably caught at different times but you can have Cpni for a long time before it gives you any trouble. The good thing is that both will be treated by the protocol for Cpn, so you are killing two bugs with one CAPi. Good for you that you have some good docs behind you. I'll make a note of that we are always looking for contacts that might help find us a doctor who knows what s/he is talking about.
Michèle (UK) GFAi: Wheldon CAP 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
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Michèle (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