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New Here My Story 22 Yearold Male
Submitted by someone on Mon, 2008-08-18 00:44. Hey everyone I just figured I would introduce myself on here as hopefully this will be my community of support for the next few months to however long I need to get through this. Sitting here trying to go over everything I've been through over the past year between being ill and dealing with the various doctors, friends, family,process of watching my life fall apart I could most likely write a novel on it all. With that said I'll try to keep this as brief and condensed as I can without trying to skip over the important details. Up until April of 2007 I was a perfectly happy and healthy individual for the most part. I was doing well at my college academically, had a great social life with many friends, and was an avid high level athlete playing division 1 soccer for my university as well. That April I took a prescription medication and between that and most likely living a hectic lifestyle with little sleep my life turned upside down. I never experienced any of the flu-like symptoms people on here report so thats maybe what makes my situation unique, im not quite sure. Anyway, the first thing that went was my sleep. I had always been a very very deep sleeper all my life, and all the sudden I found that I could barely get any level of deep sleep at all. Because of this, most likely that I realize now due to the high level of cortisol being churned out by my body to fight this infection, I started to suffer from constant fatigue and brain for, two things that were absolutle hell for me. As time went on I found myself going further and further into poor health with more fatigue, brain fog, and pains that my life completly fell apart. A once avid athlete and outgoing person I became practically bed ridden. I won't go into all the details of trying to go to doctors and the saga that it was as Im sure most of you can relate to it all. Basically, I didnt know what I was dealing with for the longest time. I attributed it mostly to a lack of deep sleep, which I was somewhat right about because deep stage 3 and 4 level sleep boosts immunity. When I finally got my neurologist to prescribe me Xyrem this April I saw marked improvements. While I didnt feel that well on the medication after about a month and a half on the medication I saw less and less fatigue when coming off. Upon completely coming off the medication I saw many of the symptoms affect me to a less extent, which I am somewhat thankful for because it has remained that way over the past months. Interesting thing was that I discovered eventually on Xyrem when I would take it at night I would feel horrible the next day. It was like my symptoms returned x10 the next day, but after getting sleep the following night my symptoms subsided and I felt great the next day. Looking back on it now realizing this is a herx reaction is interesting to me to say the least. Anyway, over the past couple months looking back at my blood tests with elevated liver enzymes and a high WBC count I realized that my condition could indeed be CPNi related. While I haven't been able to get any doctor to prescribe any tests for it yet as my endo refused to stating that testing for it didnt exist, I've done my own little experiments that have led me to believe what Im dealing with is indeed bacterial. I found some amoxicillini that had been prescribed to me around 2006 that I had still had around the house. After a couple days on it many of my symptoms have improved, and I find myself sleeping better as well. Im hoping in the near future to find a doctor and go on the protocol. The thing that scares me the most is that I have read over and over again that this is nearly impossible to eradicate. Anyway, thanks for your time especially if you have read over all of this. I greatly appreciate it.
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Hello someone (clever and
Hello someone (clever and cute name) and welcome,
22 - not fair! - if you have this bug, you are catching it early. That is the very best time with the quickest recovery, it is beginning to appear. Get some NACi which may tell you something. There appear to be no false positives. It is not a certainty but is a fairly reliable quick, lowcost test and is not at all harmful in any case.
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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 55 pulses LDNi Rifampin 8/08 again NC USA
Hi Someone.I suggest you
Hi Someone.
I suggest you read the 'getting started' module at the top of the page that should given you some better idea about your condition. Not everybody can remember catching Cpni, because for some people it is just like having a bad cold, and the symptoms that have laid you low would not appear straight away, it may be a matter of months and years before anything nasty happens. Some people live with Cpn without any problems until much later in their life.
What Katman is talking about is explained in the getting started module, but in short NACi is a liver protective supplement that has the added advantage of affecting one of Cpn's life stages. If you get sneezing, runny nose, itchy eyes etc from taking it you are fairly sure that you have a Cpn infection.
Keep us posted...
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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
Xyrem is GHB. Interesting
Xyrem is GHB. Interesting that it should have an effect on Cpni (if thats what you have). If you want to take something more natural, give melatonini a try. Also if you have problems achieving deep sleep give taurine a try. It supports delta level sleep.
What was the prescription med you took btw?
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Hunter: Don't think - experiment
Hi Someone, Indeed
Hi Someone,
Indeed mysterious name. Happy to meet you.
Your history shares many aspects with ours, mostly the chronic fatigue part. Reasons for that could be multiple. Your improvement after taking amoxicillin suggests that infection is, at least partially, bacterial.
Cpni does not cause elevated WBC and liver enzymes. Xyrem has a warning not to be used in individuals with a compromised liver. How high were your WBC?
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Cured of multiple sclerosisi, stopped the Wheldon's protocol in Nov,2008. EDSSi 0 for over 5 years.
Hi everyone. Lifeontheice,
Someone, I am glad you are
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Combined Antibiotic Protocol minocycline, azithromycin, metronidazolei for muscle pain, insomnia, interstitial cystitisi, sinus, disphonia, dry eyes, stiff neck, veins, thyroid, TMJ.
You said you are using an
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GFAi - asthmai, sinusitis/rhinitis, tendonitis, low back pain, hypothyroid. Started azi 1000mg/week Jan 9, '08. Increased azi to 250mg/day, added 20mg Benicar daily Mar 13, '08. First Flagyli pulse started June 30, '08. Added Doxyi 200mg/day Aug 16.
Hey everyone thanks for the
I was also a avid athlete
I was also a avid athlete (Wrestling, football, wieght lifting) when I got really sick. Also with you no doctor would give me the test until I persuaded a doc after 8 months of no results. I found out that you can be sick for months on end before you get a diagnosis. Docs will also say is desperation to get you out of there office is "Its Firbromyalgia or CFSi and theres nothing you can do about it but live with it. I dont know one person that will just live with it but that answer is good enough for docs. Do yourself a favor and get tested and even if you cant find a doc to test you. If you dont get better go on the protocol. Most likely if its not cpni then its the notorious mycoplasma which is impossible to test for. The protocolsi on this website are also used for myco as well. A lot of people here have multiple infestions, cpn, myco lyme etc. These protocols are good for all. Theres no miracle pill. but if your desperate like me you can buy the meds online and treat yourself. All I can say the protocol is the only thing thats works. Its simple antibioticsi kills bacteria. Docs like to prescripe the latest medication and other things for pain but all of this is for symptoms. the bacteria is uneffected and just keeps destroying your body. I plan on being on this protocol for at least a year but you can be on it for 3-5 years. It depends on the p[erson and how bad they are infected. I started treatment after 7 months with on and off antibiotics treatement becuase no docter would prescribe me antibiotics for more then a month. Dont be passive and tell yourself it will get better becuase the longer you wwait the more complex it gets. If I would of started treatment a month or 2 after infection I would not be in this perdicament but thanks to no it all docs I am and will have to be on the protocl for some time. Hope you get better and God Bless
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Fibro, CFSi, Myco, CPNi, Wheldon protocol, Zithro 250mg M/W/F/S, Doxyi 100mg 2x day, NACi 1200mg 2x day, Flagyli pulses 400 mg 3x day
The only significant
The only significant reaction to NACi, I've ever had, is the increase in mucous that you are describing. It should be mentioned that not everyone does respond with flu-like symptoms, even if they are Cpni infected. I tested positive for it, and I didn't. I agree with Lee. Better to be on the safe side, than the sorry. And you may be one of the lucky ones who catch it quicker, at a young age, who then only require a year or so's treatment. Best wishes.
RRMSi, diagnosed 2/04. NAC 4/06. Started Wheldon/Stratton regime 8/30/06. Doxycycline, 8/06, Azith, 10/06. Switched to Roxithromycin 11/06. Psuedo relapse/die-off with hospitalization 1/07. GAD-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY. LDNi 4/07. 1st Tinidazole Pulse, 8/11/07. Keflex 2/08. IV Rocephini 3/08. IV Clindamycin 5/08.
Hey everyone thanks for the
NACi never causes any
NACi never causes any reaction with me either so don't worry that you don't have symptoms from it.
And although some people here have no choice but to treat themselves I'd recommend that if you have to go that route you still keep trying to find a good doctor to help you with it. Treatment can cause all sorts of issues from kidney problems to hypertensioni so you really should have a doctor to monitor those things closely and adjust treatment or add/change meds as necessary.
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GFAi - asthmai, sinusitis/rhinitis, tendonitis, low back pain, hypothyroid. Started azi 1000mg/week Jan 9, '08. Increased azi to 250mg/day, added 20mg Benicar daily Mar 13, '08. First Flagyli pulse started June 30, '08. Added Doxyi 200mg/day Aug 16.
anyone help with doctor
If you cannot find a doctor
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Fibro, CFSi, Myco, CPNi, Wheldon protocol, Zithro 250mg M/W/F/S, Doxyi 100mg 2x day, NACi 1200mg 2x day, Flagyli pulses 400 mg 3x day