posted
I've read lots and lots and I appreciate so much information. I'm curious about cases that were caught earlier.
I have been symptomatic for 13 months (arthritis and neuro issues). I believe I became infected just under two years ago.
I've had the full work up from many specialists to rule out MS, Lupus, HIV, TM, etc, etc. (To the tune of 60k - thank goodness my insurance is still covering this at 90%!)
My neuro (MS) doc got a positive IgM and two positive ELISA. She sent me to an ID who got nothing. However, they have talked and decided to play nice together. Neuro doc gave diagnosis of advanced neurologic Lyme disease and ID doc will treat with 28 days of in-home IV ceftriaxone.
- What are the chances that this will be enough since I haven't been sick for several years?
- How sick were you the first time you did IV ceftriaxone?
- When were you sick - the first week, the third week, the entire time?
- Did you need daily help at home, around the house, taking care of your self, etc?
Thanks so much for the info, knowledge and advice!
A.
Posts: 15 | From Seattle, WA | Registered: Mar 2009
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Treatment for each person with ceftriaxone will be different. I know a guy who was very ill, could not sit up or walk, thought he was dying, had 28 days of ceftriaxone, and has been in remission for some time now and is working full time. Others it has not helped at all.
I too am on IV ceftriaxone. The first couple of weeks I felt incredibly weak, but gradually, experienced small improvements. Before ceftriaxone I was having neuro issues, unable to walk, etc. I feel it helped save my life. I am still on it, but I feel like my body is getting used to it (2gm 1x a day). To answer your question, I did need help at home. Mu husband took over the laundry, cooking, etc. But he is now noticing a difference.
But most important, I would go under the Seeking a Doctor section, and try to find a Lyme Specialist (LLMD). Ticks carry more than one bacteria, and it would be key to identify if you have these other bacteria (also called co-infections). Different antibiotics kill different bacteria. My LLMD also gave me Doxycycline to help with other bacteria.
Hope this helps and best wishes in your recovery.
Posts: 515 | From In His Loving Care | Registered: Apr 2009
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I have a list of all the LLMDs in my state, but of course none of them take insurance. I'm doing my best to exhaust all of my options through traditional medicine avenues (i.e. - those covered by my fairly generous health insurance) first. Then I'll go from there if needed.
Thanks again for all the help and support! Good luck to you in your continued recovery.
Posts: 15 | From Seattle, WA | Registered: Mar 2009
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
MorningSong is correct, you do need to also be evaluated for co-infections that almost always come with a Lyme infection (the ticks carry a few to several different pathogens in majority of cases). BUT those coinfections aren't just bacterial, they are also viral, mycoplasmal, and parasitic or protozoal (like Babesia, which is akin to Malaria).
If you can get a mainstream doctor to do proper evaluation, diagnosis, and treatment for these other possibilities then I would be very surprised, but happily so.
This really is a specialty set of diseases, and to not see an LLMD (Lyme and associated Tick-Borne Disease Specialist or Lyme Literate Medical Doctor) would be like going to an Orthopedist when you have a problem with your eyes. Only this scenario is far more risky, as letting these things go improperly diagnosed and treated can be devastating.
If I were you, I would start the IV antibiotic, see what your MS and ID Specialists can do for you to evaluate for the other known coinfections, and while you are doing that, do everything you can to find the funds to visit a good LLMD as soon as possible - hopefully BEFORE your IV script runs out.
Please see the ILADS guidelines for information about how long one should treat Lyme. The general guideline is to continue to treat for 3 months after the last symptom has gone. Just 1 month of ANY med after the Lyme has disseminated and gone Neurological (as in your case) is not the advised course of treatment. The Lyme has become far more difficult to treat at that stage.
There really is no time to waste. Lyme and coinfections can be manageable one day, and debilitating the next. I would do everything in my power to head this off with ILADS guidelines-based treatment, before you get as sick as many of us here are.
If you need help coming up with ideas and ways to seek help if you can't afford out of insurance visit, please don't hesitate to ask. There are many here who have been in your position. I would say that is actually the most common situation.
posted
Thank you for your concern and the repeat information on the importance of an LLMD. I have done extensive research on LLMDs and LLNDs, as well as co-infections found in my state and symptoms of co-infections, etc.
Right now, I am really hoping to find some shared stories and thoughts on the treatment I am about to begin.
Thanks again to all who read and share! It's always appreciated.
Posts: 15 | From Seattle, WA | Registered: Mar 2009
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posted
Also, while on the IV, it is important to have liver and kidney function checked. My doctor checks weekly.
Posts: 515 | From In His Loving Care | Registered: Apr 2009
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posted
My husband was ill with MS-like symptoms for about hte same length of time before the tested positive for Lyme.
He could barely walk the day we started on IV Rocephin and within 5 days he was significantly better and continued to improve for the month.
However, within 4 months of ending that 30-day treatment he started going down hill again. The ID doc would have nothing to do with us again and the neuros were only willing to push MS drugs.
Eventually he began taking oral doxy and improved a bit on that, but has just recently finished 9 months of IV abx. Rotation of Rocephin, Claforan and Vancomycin.
The treatment itself never caused him to feel ill. if you have a picc line, you could administer the abx yourself at home w/out assistance. You'll need help 1xweek to change the dressing.
Based on our experience, I would not be comfortable with someone I cared about in a similar situation undergoing only 28-30 days of IV abx without at least a plan to follow-up with an oral that crosses the blood-brain barrier.
Posts: 39 | From wdc | Registered: Aug 2007
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posted
Once again - thanks for all the helpful info!
My insurance will cover in-home help with the line, blood work, etc. Again, I realize this isn't ideal but am incredibly happy I can at least start this kind of treatment and be covered by my insurance.
Thanks again!
Posts: 15 | From Seattle, WA | Registered: Mar 2009
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