Complicated. In April still not able to do complete protocol, extremely tired and not feeling good at all despite lots of charcoal and other remedies. Was feeling very low. Stopped Roxi, on Doxyi only for a while. Got more and more depressed. Stopped Doxy and within a week depression was gone. Thought I would give my body a break with antibiotics but after a little more than week I got back so many upper respiratory infection symtoms, that i started again. Right now I am on Azithro only and did a Metroi-pulse two weeks ago.
Asked three different doctors to check my cpni-antibodies. They refused to help me with that. One of them, an infection specialist, told me he couldn't help me with my illnes. This thing, taking antibiotics for such along time was according to him completely crazy. "Why is my nose less congested when on antibiotics?" I asked. "Because the antibiotics have a strong anti-inflammatory effect" He answered. When I asked who should help me if he couldn't, he said I should seek a psychiatrist. "Because you apparantly need help to get rid of this illnes you have had for such a long time" His words.
You should know in the second or year of my illness I was sent to a psychiatric clinic. A psychologist made a lot of test, and I had sessions with her weekly for several months (made me even more exhausted). We stopped after she stated she had absolutely no idea what was wrong with me.
When I moved to the place where I live now I had to see a psychiatrist again. He talked to me for 20 minutes and told me I was depressed. Despite I assured him I was not feeling depressed at all only extremely tired and flu-like. Then I had to do time at a social-psychological rehabilitation place. It was actually very nice and the talks there were ver helpfull for my mentall well-being, but it didn't make me better physically. "We can't do more for you here" I was told.
So I had already tried that, the physician above didn't care to ask. The GP I had before the one I have now was convinced I have some kind of anxiety disorder that generates all my physical symtoms. And he doesn't care at all that I don't feel anxious.
Well. Complicated. I can't do the protocol and apparantly I can't stand being completely without antibiotics either. When I started this I thought I would be able to do full protocoll within six monts and also that I would be much better by now. But I was wrong. Will only have money to buy supplementsi and abxi. only to the end of this year. And I don't have any plan. Don't know what I am going to do. Just wanted you to know.
I am not sure how much energy I will have to be here. So if I am not answering or writing here it's not because I don't care. It's because I can't.
I have not been following anything here. Maybe once a month I come to cpnhelp and read a few random posts. That's it. I wish you all well.
Odhilda
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"Odhilda" CFS, not able to work or study since 1993. Mekobalamin (B12) injections 10mg x12/month. Levothyroxine(T4). NACi 500-850. Started Doxyi Sept-07. Started Roxi Nov-07 first Metroi-pulse March-08. Swedish is my first language.
Odhilda~Have you been
Odhilda~
Have you been checked for other infectionsi? HHV-6? EBVi? Enterovirus?
See: www.hhv-6foundation.org and www.enterovirusfoundation.org for further info.
Best, Timaca
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Dx lyme disease 3/05. Dx HHV-6, EBVi, VZV, and HSV1 6/07. Dx with CPni 5/08 and enterovirus 2/09. On antibioticsi for 2+ years, Valcyte (antiviral drug) for 9 months. On 100 mg doxyi bidi for Cpn, acyclovir for viruses, oxymatrine for enterovirus
Hi Odhilda, So good to hear
Hi Odhilda, So good to hear from you.
I have started a number of adjunct support that have been really helpful for me. I recently had a test that confirms what I already knew, that I am a poor detoxer. So I need detoxification support. Please read my blogs and see what I have tried over the past two years. I will be blogging about my current understanding of my situation later this month. I have started several more supplementsi for support and yet again am feeling stronger and clearer with these new additions.
Louise
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6-07WheldonCAP CPnBb FMSi-CFS20+yr, 11-07Cholestyramine HSPRNx7d-porphyrin+endotoxini
3-08Iodoral, 5-08BHRT, 8-08Same+Bs, 10-08D-10,000IU
2-09Intermit-CAPDoxi
RoxiClari,Tinii, 2-09LDN-CFS1-10-IT+Ursodiol300Bid+Lauricidin
I totally understand how you
I totally understand how you feel. I too have been sick a long time and have been through the stupidity. First of all, dont ever let them get to you. You know the truth and when they speak this " go see a shrink" nonsense its because they are uneducated in chronic infectionsi and taught not to understand them by the drug companies who do the research that goes into the textbooks that they learn from. So first thing, develop a stiff upper lip, because you need to survive and because you want to survive. Put on a suit of emotional armour aginst them and thier stupidity because with this disease you have to stay wise. Dont let them sway you into seeing a shrink when you have a physical health issue, it will make you depressed and isolated, confuse you and it will not help you.
My best advice for now is to just keep trying with the antibioticsi. Thats really all you can do right now if financially you are in a tough spot. Keep looking for a new dr and take each one as they are. If they arent receptive, move on to the next until you find one who is receptive, but most important, dont internalize the rejection because its not about you its about them and thier own lack of knowlege and ignorance so how can you be upset at them for something they dont know anything about. You cant talk an ignornat dr into helping you, so better to spend the time looking for another one, and another one
I wish i had advice about the financial burdons of this disease but Im stuck in a rut myself. Reality is that if you cant work, its impossible to get money and if you dont have money, how do you afford to get better. It becomes a game of survival and somehow we have to learn survival skills. We become like the resistant bacteria that consumes us, we have to fight and fight and fight until we develop resistance and new coping mechanisms to press on.
I wish you strength and toughness to find an answer to this complicated situation.
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MSi TMJ trigeminal neuralgia
cfsineutropeniacystitisnephritisoptc-neuritissinusitis. Dox200 zith250 rif 600 daily. Treating cpn and TBI'sHave you tried rhodiola
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GFAi -
asthmai, sinusitis/rhinitis, tendonitis, low back pain, hypothyroid. Started abxi 1/9/08. Azi 250mg/day, doxyi, tinii, 5,000iu vitD, rhodiola, SAM-eI have been tested for
I have been tested for Hepatitis C and for HIV. Don't have any of them.
Doctors are not interested in taking any other tests. And I don't think private lab doing tests like this exists in Sweden.
It's very difficult to get eny kind of help for diseasesi like this.
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"Odhilda" CFS, not able to work or study since 1993. Mekobalamin (B12) injections 10mg x12/month. Levothyroxine(T4). NACi 500-850. Started Doxyi Sept-07. Started Roxi Nov-07 first Metroi-pulse March-08. Swedish is my first language.
Yes I have tried rhodiola.
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"Odhilda" CFS, not able to work or study since 1993. Mekobalamin (B12) injections 10mg x12/month. Levothyroxine(T4). NACi 500-850. Started Doxyi Sept-07. Started Roxi Nov-07 first Metroi-pulse March-08. Swedish is my first language.
Clammed up, yes I think I
Clammed up, yes I think I will keep trying with the antobiotics as long as I can. I just don't understand why I am not improving at all after 1.5 years on antibioticsi.
You are absolutely right it is not possible to talk an ignorant doctor into helping me, and also I agree it is a waist of energy to get upset. Unfortunately I don't think there is a point in looking for a doctor that can help me. At least not in Sweden.
Thank you for wishing me strength and toughness ,I really need more of that. And hopefully an answer.
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"Odhilda" CFS, not able to work or study since 1993. Mekobalamin (B12) injections 10mg x12/month. Levothyroxine(T4). NACi 500-850. Started Doxyi Sept-07. Started Roxi Nov-07 first Metroi-pulse March-08. Swedish is my first language.
Louise, I suspect strongly I
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"Odhilda" CFS, not able to work or study since 1993. Mekobalamin (B12) injections 10mg x12/month. Levothyroxine(T4). NACi 500-850. Started Doxyi Sept-07. Started Roxi Nov-07 first Metroi-pulse March-08. Swedish is my first language.
Odhilda, here is the link to
Odhilda, here is the link to my best over view. Recently I added several more supplementsi but start here for now. I will be way at a Yoga Teacher Training next week. May have access to computer but I am not sure of that. http://www.cpnhelp.org/cap_adjunct_treatment_upd
The methylation Supports were very helpful, I started them without any testing. My recent blood test confirmed what I suspected and had been treating. My doctor approved but did not suggest the methylation support supplementsi.
Also the ChitosanHD, high density, from www.wholehealth.com works a lot like cholestyramine to clear out the brain fog. I wonder if they would ship to you. It is not that expensive.
I tried to give a very clear outline in the treatment blog throught the link above. I hope you are able to read it with easy.
Blessings to you Odhilda. Louise
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6-07WheldonCAP CPnBb FMSi-CFS20+yr, 11-07Cholestyramine HSPRNx7d-porphyrin+endotoxini
3-08Iodoral, 5-08BHRT, 8-08Same+Bs, 10-08D-10,000IU
2-09Intermit-CAPDoxi
RoxiClari,Tinii, 2-09LDN-CFS1-10-IT+Ursodiol300Bid+Lauricidin