LymeNet Flash: How Long Does it Go On?!!

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»	LymeNet Flash » Questions and Discussion » General Support » How Long Does it Go On?!!

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Author

Topic: How Long Does it Go On?!!

Lidia
Member
Member # 5681

posted

Does anyone really know when they're "cured"? I was bitten in June, 2002, dx almost immediately, took Doxy for 3 weeks and thought that was the end of it. Symptoms returned in April 2003, Lyme was confirmed and I've been on various abx for 9 months, also taking Provigil and Ambien, tried Lexapro but side effects weren't worth it. I was feeling really good for a few months, thought I was "cured" but my Dr decided to switch to a different abx last month. I guess she wants to scout out any hiding chetes.
Now, some days I feel "normal", most days I am tired almost as soon as I get up in the morning. I've been on Zithro for about a month and am having back pain and pain in the joints and muscles of my arms and legs. I have pain in the back of my neck and have been getting migraines.
I didn't have this pain with the other abx even though I did go through a God-awful Herx. It feels like severe arthritis in the joints, and muscles feel like I've been working out too much. I don't know if this pain's from the Lyme/treatment or just a sign of getting old. I'm approaching middle age so maybe the Lyme is gone and old age snuck in while I was distracted with the Lyme?!!
Isn't there some point in all this when you finally start to feel better? I didn't expect to feel as lousy nowas I did in the beginning especially since I was diagnosed pretty quickly. I guess I figured you were only really sick when you went for years not knowing you had Lyme.
How much longer can this go on and does anyone ever get better?

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Posts: 11 | From RI | Registered: May 2004 | IP: Logged |

mlkeen
Frequent Contributor (1K+ posts)
Member # 1260

posted

Hi Lidia-

Yes there is a point when you will feel better. Late diagosis and poor initail treatment make the going slower.

I think I was bite in 1999 or 2000 and didn't get continuos treatment until last Spring. I'm a different person now, much better but still stiff and brain dead some days and still on abx.

Please be treated for co-infections. I believe tests aren't reliable for them either. I think finally taking Mepron has made a huge difference. This is for Babs and any other parasites that might be infecting you.

Getting well is also about taking good care of yourself, eating right, exercising and resting.

Mel

Posts: 1572 | From Pa | Registered: Jun 2001 | IP: Logged |

Kara Tyson
Frequent Contributor (5K+ posts)
Member # 939

posted

I think I have gotten rid of it. But it took 4 1/2 years of treatment and changing meds every now and then. 2 steps forward and one step back.

Posts: 6022 | From Mobile, AL | Registered: Apr 2001 | IP: Logged |

Lenny777
LymeNet Contributor
Member # 5452

posted

The three weeks of Doxy wasn't enough. Six weeks minimal. So it looks like it had almost 10 months to build back up before the symptoms returned and you got back on abx.

Posts: 635 | From Texas | Registered: Mar 2004 | IP: Logged |

Stella
LymeNet Contributor
Member # 3119

posted

Be patient and try to take one day at a time. Ir'll help ease the burden.

Live in the present.
Live for the present.
Enjoy the present.
Plan the future but I'd try not to worry too much about it.

Continue treatment and before you know it you'll be feeling much, much, much better!

Posts: 712 | From Ottawa, ON, Canada | Registered: Sep 2002 | IP: Logged |

Kara Tyson
Frequent Contributor (5K+ posts)
Member # 939

posted

You will know when you are cured. I truly believe that I am.

But it took 4 1/2 years (so perhaps you are 1/2 done).

There is light at the end of the tunnel.

Posts: 6022 | From Mobile, AL | Registered: Apr 2001 | IP: Logged |

Lymetoo
Moderator
Member # 743

posted

Hi Lidia! I'm sorry you are still feeling awful. Lyme treatment can be a long, hard road. I've had Lyme forever (45 yrs)....and was only dxd 4 yrs ago. You can and WILL get better, just don't give up too soon!

If I'm not mistaken, the Zith itself could be causing the joint pain. I may be wrong, but do a search on quinolones....and type in cave76 under the screen name.

I'm sorry I don't have time to do the search for you. I don't think zith is a quinolone, but I think cave76 mentioned it in the discussion of them.

If I'm wrong then you are KILLING KEETS bigtime! So try to rejoice!

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oops!
Lymetutu

Posts: 96239 | From Texas | Registered: Feb 2001 | IP: Logged |

rosesisland2000
Frequent Contributor (5K+ posts)
Member # 2001

posted

Lidia, have you seen these posts? I see we haven't heard from you in a few days. How ya doin?

Rosemary

Posts: 6191 | From Arkansas | Registered: Jan 2002 | IP: Logged |

Lidia
Member
Member # 5681

posted

Yes, I'm here and have just read the posts. I've been off my computer for a while because of vision problems. I'm trying to catch up now.
Thanks to all who took the time to encourage me. I'm feeling a little better and the joint pain hasn't been too bad the last few days. Extra strength Tylenol seems to do the trick for now. I actually took a long walk a few days ago. It felt sooo good!
Just like most of you, I have good days and bad days. The good days are OK, the bad days are brutal and last for way more than a day.
I'm seeing a new doctor next month. Anyone know of Dr L in RI? I heard she's not officially LLMD but very good. Anyone ever hear anything about her?

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Posts: 11 | From RI | Registered: May 2004 | IP: Logged |

Lymetoo
Moderator
Member # 743

posted

quote:
Originally posted by Lidia:
I'm seeing a new doctor next month. Anyone know of Dr L in RI? I heard she's not officially LLMD but very good. Anyone ever hear anything about her?

Hi Lidia...glad you're feeling better!
About that dr....you need to get in touch with lymebrat. She can give you the scoop on drs in RI. [Basically, there aren't any!] She's from RI and can help you out.

A good LLMD is priceless!

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oops!
Lymetutu

Posts: 96239 | From Texas | Registered: Feb 2001 | IP: Logged |

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