I was diagnosed with Fibromyalgia about 9 years ago. A few months ago I had 3 positive Lyme tests. No co's. After reading about children w/Lyme I believe I have been infected for most of my life. I have also been reading about the cyst form of Lyme. I was on Doxy for 2 months, then IV Ceftiaxone for 4 weeks. I have had what could have been herx's, but no sign of improvement. Just met with the doctor (somewhat LL). She wanted to think about what would be the best next step and run some more tests. I want to go into my next appt. informed. What would be some ideas for a next step? Should I keep my picc line in and try another IV med, continue on ceftiaxone for longer? Try another oral med? Go on Doxy again? I am also curious about Kumanda (sp?). If you've had success with something, please let me know! =)
Posts: 8 | From Chicago/Rockford, IL | Registered: Jul 2008
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Most with chronic lyme are on IV for 8 mo or more. One month won't do much.
What lab were you tested thru for the lyme and coinfections?
Are you aware that there is a great LLMD in Missouri? Many from IL travel to see him.
Cumanda is supposed to be very good!!
PS... I was misdiagnosed with FM 28 yrs ago.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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adamm
Unregistered
posted
PM'd you the info of some more LLMd's in the region.
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Lymetoo, if most with chronic lyme are on IV for 8+ months, why would any LLMD who suspects Lyme / co-infections for 10+ years in a person start with orals?
I read Dr. B's treatment guidelines last night and this confused me. I know $$$ are a HUGE issue. Are orals even effective at some point?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I've been treated with orals only after being infected for 35 years. I am not finished with treatment but am feeling over 90% much of the time.
I have had very aggressive combinations of oral antibiotics.
Alliski, I would find an LLMD. You need someone with experience to help you get better. If you want to stick with your doctor, I would become very familiar with Dr. B's guidelines for treatment on www.ilads.org. You might also print a copy for your doctor.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
ALL, Welcome! Take the advice that others ahve given you and get a LLMD. You have the best chance of getting well with one.
Seek Tu-Tu and Six are chronic lymies who have gotten well, improved, w/ orals only. Lymetoo meant if you are chronic, when IV is utillzed it is usually for several months not weeks.
Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I would find a good LLMD. They have certain protocols that they know work; whereas a regular doctor with not much experience with Lyme is just grasping at ideas.
Plenty of Lyme patients get better on orals and never go on IV meds.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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I am palnning on making an appt. With a Lyme doc in Milwaukee. I believe this is the closest LLMD to me. I blew it because 2 months ago when I was looking for a doc I got his name from lymenet but decided to go with the local doc. It was going to take 2 months for my 1st appt.!! However, had I made the appt., I would have had the appt. last week. I am hesitant to make an appt. w/the Missouri doctor because of the distance.
Posts: 8 | From Chicago/Rockford, IL | Registered: Jul 2008
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