Here is my June update. I will be on oxymatrine 19 weeks as of tomorrow. I am also on acyclovir for other viruses and doxycyline for Cpn (Chlamydia pneumonia). I had the best month ever since being ill (5 1/2 years).
I rank my days (1-10 with a "1" being in bed and a 10 being back to normal--which for me was being very physically active). Most of my days have been around a 3 (meaning life is an effort) to a 4 (meaning I have some enthusiasm for life). In the month of June I had 18 days that had at least part of the day ranked as a "5". I could count on one hand the number of days in the last 5 1/2 years that were a "5" prior to this month. SO....significant improvement.
Now, I still have symptoms...lots of nerve pain, joint pain, head pressures, fatigue and I don't feel normal. BUT....there are times when I do feel normal, and there have been at least 18 days this month where I have gotten a lot of things done!
So, I am encouraged. My labs came back with HHV-6 and EBV antibodies in the normal range. Enteroviruses (Coxsackie B4 and B3) are still high, but I would not expect them to drop yet since I haven't been on oxy that long. Cpn antibody titers are still quite high. BUT, while we thought of changing the antibiotic to better address the Cpn, my doctor decided to let things be since I was making good progress. That seemed a good plan to me. If I start to plateau or slide backwards, we will think of changing the antibiotic.
So...that is my update. Best wishes to all on this journey.
Timaca Dx lyme disease 3/05. Dx HHV-6, EBV, VZV, and HSV1 6/07. Dx with CPn 5/08 and enterovirus 2/09. On antibiotics for 2+ years, Valcyte (antiviral drug) for 9 months. On 100 mg doxy bid for Cpn, acyclovir for viruses, oxymatrine for enterovirus
Posted by Dawn in VA (Member # 9693) on :
Thanks for posting your progress, Timaca. Very promising to hear about the success with your titers with acyclovir. Keep on keepin' on!
Posted by pamoisondelune (Member # 11846) on :
There's an antiviral herb called LOMATIUM. It doesn't cost much. Why don't you give it a try? Tell us if it has any effect!
LOMATIUM permanently wiped out my Herpes simplex lip sores. And historically, it protected the Washoe Indian tribe from the 1918 pandemic flu.
I bought 3 different brands from websites, where i read about its history.
I would really like to know if it helps you even a little!
---Polly Polygonum
Posted by bettyg (Member # 6147) on :
timaca,
thanks for your update on your health and what you've done to date!
so sorry to read you have 3 - 5 range days, but make the most of every day you can.
hugs/kisses to a very special RN who has educated us all so much on HHV-6 and enterovirus.
Posted by timaca (Member # 6911) on :
Hi Pamoisondelune~ I won't be able to add in Lomatium at this time. My doctor wishes to keep everything the same to see if I continue to progress. If I plateau or slide backwards...that is when changes will be made. Thanks for the input though. If others have tried Lomatium I would be interested in their feedback.
Hi Bettyg~ "5" days are actually good days for me, so I am thrilled when I have them. I can do a lot on "5" days and have decent enthusiasm for life. My scale is a bit skewed, for I am really doing better than half speed (since a 10 is normal)...but it is the scale I made up and am working with. If I had to stay at a level 5 for the rest of my life, I'd be OK with that. I hope to continue to improve, and of course not go backwards...time will tell. Also I am not a nurse.
Best to all, Timaca
Posted by Jane2904 (Member # 15917) on :
Hi Timaca,
Glad to hear of your progress. I hope the improvements continue. Looking forward to your days turning into 10's for you.
Posted by seekhelp (Member # 15067) on :
Timaca, that's great you are making improvement! BTW, who is this magical LLMD you work with who actually considers everything and treats for them? THat's novel. Posted by timaca (Member # 6911) on :
Seekhelp~ I see two different Infectious Disease doctors who are AWESOME. They understand that more than one pathogen can cause issues in a person. They are very open minded, very involved in research and are working very hard to get ill people like us well.
Best, Timaca
Posted by Need Lots of Help (Member # 18603) on :
Timaca,
I am so glad you are doing better!!!!
Our doctors just started treating us for viruses too. My husband has EBV, HHV-6, Cyclomeglovirus, Coxsackie, and Parvo! I didn't know people could have Parvo! So he is on anti-viral meds and so am I.
I have the EBV, HHV-6, Cyclomeglovirus, and CPN. I am hoping they will help us get back on track.
I do think there are so many things we have to do to get better. I just hope I am taking all the right steps!!
I hope you keep on doing so well!!
Shalome
Posted by feelfit (Member # 12770) on :
Timica,
You give hope that perseverance wins!!!! Thanks for sharing your uplifting report. Hoping that you continue to improve and can report a 7-8 next time!
Feelfit
Posted by aiden424 (Member # 7633) on :
Wow, so glad to hear your doing better. I've always thought that viruses play a roll too, some where in all my health issues. I think it may be one of several missing pieces of my puzzle.
Kathy
Posted by Tincup (Member # 5829) on :
Hey T...
I know the rough road you've traveled .. bless your heart.
And your latest news makes me want to...
You sure deserve some good days and my wish for you is for many more.
Keep on trucking over these bugs and we will win this war!
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