posted
I am getting a little worried. 2nd round of antibiotics. 3 weeks on, 1 week off and now I'm 2 days into the 1st week again (so not even 4 full weeks of antibiotics yet).
I maybe have noticed slight improvement in my balance and ear symptoms (it seems to come and go now), but the pain has increased significantly and in new places that I didn't have it before like both of my knees. My cognitive symptoms seem to be getting a little better, but then it seems to come and go as well.
My spine has burning pain! I am getting discouraged.
Posts: 618 | From NC | Registered: Oct 2009
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
It took me over a year to really see anything.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
jwall, I don't know how long you've been sick. That can make a difference sometimes. Some people have to go at it for months to years to get a foothold.
If you see improvement in under 2 mos., you'll be one of the lucky ones.
Hang in there. Many here have been there before. I wish there were a 24/hr lyme extraction protocol but sadly there is not
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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posted
wow, a year. I guess I need to be patient then. Were you on IV during that year?
Posts: 618 | From NC | Registered: Oct 2009
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
took me 3 years to see improvement. Sorry to be the bearer of bad news. I think it depends on how long you have been ill and how agressive your tx is. best of luck
Posts: 3905 | From USA | Registered: May 2007
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posted
My neuro. symptoms started 1.5 years ago. I wasn't diagnosed until 2 months ago, so I think I have a long road ahead of me.
Will IV help me improve more quickly?
Posts: 618 | From NC | Registered: Oct 2009
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David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
It took me about five months to BEGIN to see improvement and that was on a Bicillin/Biaxin combo. I had gone undiagnosed at least twelve years. Dave
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
That some of your symptoms appear to be worsening could be a good sign too. Maybe you're herxing. It does not necessarily mean that you're getting worse. Let us know how things go.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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posted
but, would herxing be non-stop - like constant burning pain in my spine? And I feel so much worse. I was at least getting by before abx and going places/doing things (but not very well). Now I would like to stay in bed all day if I could, but I have 2 little boys to take care of. I should look at this as a good sign I suppose.
Thanks everyone. I will keep you posted. I am meeting with Dr. J in DC next week for the first time.
Posts: 618 | From NC | Registered: Oct 2009
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
Well, you have just initiated treatment (after being sick for over a year) so depending on the body's bug load you could conceivably be experiencing some prolonged tough herxes...
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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posted
I am on doxy, zithromax, and flagyl. I pulse flagyl every 3rd week for 3 days. that about killed me last time and am not looking forward to it again!!!!
does zithromax kill babesia? I'm not sure I have babesia because I never sweat. I do get chills though.
Posts: 618 | From NC | Registered: Oct 2009
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posted
I got treated within 10 weeks of my tick bite.
I was on a low dose of Ceftin for 3 months, and saw some improvement during the 3rd month, but relapsed immediately 2 days after stopping the drug.
Then I saw an LLMD and started doxy, and had a 10-day herx starting on day 3, then felt worse than I had been and stayed that way for the next 4 months.
After 3 months of doxy, I added Biaxin. When I had been on both for about 6 weeks, I began to see signs of improvement--good days interspersed with the bad ones. That is still going on 2 months later.
I thought that because I caught it early, and because my symptoms are relatively mild compared to some, with no obvious signs of coinfections, that it would be easy to get rid of. I am still sick 13 months on, so I guess I was wrong about that and it will take a while.
I have heard that some people have long-lasting herxes, and that starting a new drug can cause new symptoms to show up.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I have been sick for 4 years and in treatment for two years. I was extremely sick the first two months of treatment but then felt pretty good for awhile.
Treating one infection will bring out others which is what happened to me. As I did not have an LLMD experienced in treating lyme and was dependent upon a very ignorant GP (still am) there were a lot of mistakes. I thought my worsening symptoms were side effects of the drugs so I quit them and took herbs instead, which sent me spiraling into illness again. That time is was primarily bart and remains so.
Now it seems like babesia might be an emerging new issue for me. That is why seeing a really good doctor, like the one you have an appointment with (lucky and smart you!) is so important.
I wish you the best so that you can get your life back and enjoy your little ones. You are going to be in good hands, from what I have have heard.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
Wow. I guess I'm lucky. I'm on day 32 of treatment and feel a lot better. Yes still have symptoms but they are all improved.
Balance is normal 90% of the time. Fatigue is gone. Brain fog is gone. Vision is better. Ears still ring and feel full but are better. Legs still twitch but are better. Still sweat a bit.
I'm on 400mg of doxy and pulse 1000mg of Flagyl 3 days every 2 weeks.
I really don't think I have herxed yet. I've had a few off days, but they were manageable.
Not bragging btw. Just hopeful.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3139 | From Massachusetts | Registered: May 2010
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
bcb1200, maybe you are ones of the people here who REALLY does have Lyme and it's working. I'm sure some of us don't for real.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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posted
I would remain hopeful and keep at it. I don't think a herx has to be constant - I get them cyclically throughout the day - usually right after the administration of an antibiotic or antifungal (although both are rated to have high blood serum levels for extended periods of time)
IV has a tendency of causing rapid but unsustainable gains and is not necessarily superior to orals. According my LLMD, some orals have blood brain barrier penetration than IV even. And IV comes with having the port, which would be difficult for an active person like me.
Sounds like you're herxing and making progress in terms of the illness, although it might seem like you're actually doing worse. Same thing happened to me. You will be in good hands with Dr. J. Good luck, it is a long road.
-------------------- long road since 2010 abx got me over the hump diet, detox, and herbs have got me to heal Posts: 174 | From CT | Registered: Jan 2010
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-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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posted
Hi triathletelymie, I was surprised to see my old post pop up again. I was reading it and so many things have happened since I posted back in June.
How are you feeling these days?
Posts: 618 | From NC | Registered: Oct 2009
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-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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