Lyme, Babesia, Not Walking

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Keeping the Faith
Regular Member


Date Joined Nov 2008
Total Posts : 77
   Posted 12/7/2008 5:29 PM (GMT -6)   
My 16 yr. old daughter was diagnosed with Lyme in Sept. 08 and Babesia duncani and Babesia microti in Nov. 08.  She hasn't walked on her own since July 08.
 
Currently she is taking:  Zithromax 250 mg 2x/day, Plaquenil 200 mg 1/2 pill 2x/day, Mepron 750 mg 1 tsp 2x/day, and Artemisinin 200 mg 2x/day. 
 
She still has bad headaches, light sensitivity, joint pain, hair loss, sleeplessness, etc., although she started taking the Zithromax and Plaquenil in Oct. 08.
 
Has anyone experienced not walking -- loss of strength in lower body?  If so, have you regained your ability to walk?  She has treated with Dr. Jones in New Haven, Connecticut, and he said she will walk again and be pain free, but it will take at least six months of treatment, maybe up to a year. 
 
Just looking for some encouragement until we get there.  Thank you.

masonsmom
Regular Member


Date Joined May 2008
Total Posts : 84
   Posted 12/7/2008 9:28 PM (GMT -6)   
My husband started abx in July 08 and has just started walking again with assistance in the last 3 weeks. Before abx his walking was bad but after several very bad herxes he had swelling and very painful joints and could not stand or walk. During that time he developed weakness in his legs and has just started walking again. He is started to gain some of his strength back. He has been on IV Rocephin for about 7 weeks now previously on orals with no improvement just herxing. Because of delay in being diagnosed he lost the use of his hands and is now doing some exercises to try and gain some of that back. This will take longer I am sure but we are starting to see a light at the end of the tunnel. We purchased a cheap pedal device that he uses from his wheelchair that has helped strengthen his legs. My husband is 65 years old and I believe it make take him a little longer to recover than your daughter. She has youth on her side. I wish her the best of luck and you. I believe as the doctor said she will walk again and be well but it seems it is a very hard battle. Hang in there. Bev

Keeping the Faith
Regular Member


Date Joined Nov 2008
Total Posts : 77
   Posted 12/8/2008 6:24 AM (GMT -6)   
Hi Bev,

Thank you for you reply. I'm glad that your husband is starting to improve. What oral meds was he taking before he started the IV? My daughter wants to do the IV in January if nothing happens before then. I don't mean walking -- I mean some sort of improvement. The only problem is that she really hasn't been on the oral meds that long to see improvement. Because of her age, she is missing out on so much at school and with friends. It's such a tough call. Thanks for the encouragement. Lisa

masonsmom
Regular Member


Date Joined May 2008
Total Posts : 84
   Posted 12/8/2008 7:22 AM (GMT -6)   
Lisa, I agree with you being sixteen and going through this is just not right. This should be one of the best times in her life. I hope that in some way it will make her a better, stronger person.There has to be some benefit to this terrible disease and what it has robbed her of. Ed was on Zithromax and Flagyl for 90 days. Now IV Rocephin and Augmentim XL. His herxing is much milder and improvement much better. I believe the orals did cause a lot of die off but it was rough. This certainly has strengthened our faith. I am praying for you and your family. Bev

masonsmom
Regular Member


Date Joined May 2008
Total Posts : 84
   Posted 12/8/2008 7:42 AM (GMT -6)   
Lisa, Sorry for the typo, it was azithromycin 500mg and flagyl 500 mg for orals. Bev

JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 12/8/2008 7:58 AM (GMT -6)   
Keeping the faith - I can only assume what your daughter is going through having this disease at age 16. The bright spot (is there ever a bright spot?) is that she IS 16 and hopefully her youth and prior good health will help enable her to have a full recovery within 6 to 12 mos.

I got LD at age 35 and am now 44.... and I thought the "prime" of my life had been taken away. But over the years, it's the kids, the teenagers, the college students that really get to me... they should NOT have to go through this. It is an OUTRAGE that more is not being done about this disease... ESPECIALLY for the younger ones... ESPECIALLY for the children, teenagers, young people.

In my LLDr's office, I saw a man in his 40's or 50's, he walked slowly and his knee caps were bright red, but him and his wife were so happy because he was finally out of his wheelchair, slowly but surely, and with physical therapy. They excitedly told me about "going out to dinner" 2-3 times in the past month.... they hadn't been out to eat together in over 4 years.

In my very non-medical opinion, I would try 1 to 3 different oral antibiotic combinations for a period of 4 to 8 weeks each. If no improvement is seen, I would go for the IV's.... but that's just me. I'm sure the parents with sick children will chime in with a better perspective on this than I have.

Recovery does come... sometimes very slowly (refer to me - haha) but it does come.

All the best.


Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it's the only thing that ever has.  - Margaret Meade
06/00- The beginning, 08/01-LD positive, 10/01- Igenex and CDC LD positive, 10/02-LD positive, 11/03-LD positive, 10/07-Bartonella positive, CD57=3 Current Rx's 11/12/08: Wellbutrin 300mg, Paxil 60mg, Xanax 5mg, Rozerem 8mg, Darvocet, Acidophilus, Rifampin 600mg, Levaquin 500mg, Lyrica 150 to 300mg, Skelexa, Restoril
Medicare/SSDI theme song - http://www.youtube.com/watch?v=bd2B6SjMh_w 
"How much more can I take?", songhttp://www.youtube.com/watch?v=5gHiR1xeOSs
 


Keeping the Faith
Regular Member


Date Joined Nov 2008
Total Posts : 77
   Posted 12/8/2008 7:59 AM (GMT -6)   
Hi Bev,

Does your husband also have Babesia? She has had some herxing, too, mostly increased panic attacks, moments of crying, and increased intensity of the headaches. They don't last, but they sure do a number on her when they happen. I have a call into her doctor for help with sleeplessness which has increased, too. Thanks for the prayers -- I will include you and your husband in ours. That seems to be the most helpful part of healing.
Lisa

masonsmom
Regular Member


Date Joined May 2008
Total Posts : 84
   Posted 12/8/2008 8:29 AM (GMT -6)   
Lisa, I believe Ed has Babesia however we live in Ohio where doctors say there is no Lyme. We have one doctor that the Ohio Lyme Chapter recommended but he is the first to tell you this is new to him and he is still learning. He does not test for co-infections. Our next choice was to travel to Pa or NY but Ed was too sick to do so. He also had the severe headaches, crying and even extreme laughing which are now diminishing. He never sleeps well at night even the sleep meds don't help. We hope to travel to PA in the spring when he can walk better. I am a 6 year cancer survivor and don't have the strength to get him in the car by myself now. (I lost a lot of muscle in my arms). But we are seeing good improvement now. No there is hope! Bev

Keeping the Faith
Regular Member


Date Joined Nov 2008
Total Posts : 77
   Posted 12/8/2008 8:55 AM (GMT -6)   
Bev, the headaches are excruciating for Marissa, too. A few times they have brought her to tears. She always asks for a warm cloth on her forehead, but this time I used a moist heat heating pad for the neck that my husband had for years. I put it over her forehead and eyes, and it really helped her. It seemed to break the pain after a few minutes. We saw Dr. Jones in New Haven, CT, on Halloween. He is the only pediatric lyme specialist in CT where we live. The next week we saw the chief pediatric infectious disease doctor at Mass General in Boston. That doctor does not test for co-infections either and he will only treat by IV for four to six weeks. Dr. Jones did test for the co-infections and will treat much longer. That's the difference between infectious disease and a lyme specialist. We need someone who is going to go the distance with her. I am so proud of you being a cancer survivor. We have had many family members battle cancer, and that is a very, very rough road. I wish you continued good health and success. Once your husband is better, I think the two of you should take a nice vacation to celebrate! Lisa
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