posted
Hi, I'm seeking help for my 15 yr old daughter who is suffering from Lyme and Co Infections since last 5 years.
In 2005, she had first round of sickness in India after moving from CT, USA where she lived for 2 years.She had total cognitive decline, physical deterioration, no speech, fed thru nose tube and no motor senses. She was diagnosed with Lyme after 5 months staying ill with doctors doing all kind of diagnosis and tests. She was put on IV rocephin for 4 weeks and in 6 months she regained all her functions except walking. She still uses wheelchair.
In 2008 she again started presenting same symptoms like in Yr 05 - Brain fog, loss of concentration,redness in eyes, mood swings, irritation, bed wetting, etc and she was recommended 4 weeks of IV Rocephin and that helped her symptoms to go away except mobility. All that happened while we were in India. In 2008 we moved to US and she is currently under very senior Paediatric Lyme Specialist and Neurologist care. Post coming to US, in last 2 years she improved a lot and started middle school after 4 years of gap and was really doing well till May beginning 2010.
She has again now started presenting same symptoms which were there in Yr 08 - redness in eyes, brain fog, lack of concentration, loss of words, mood swings, etc. She is on Zithromax, Keppra XR, Mepron, Bactrium, and vitamins for last 2 years. Now her Bartonella reading is highly positive and doctor has switched bactrium to Ciprofloxacin 10 days ago. Her symptoms have still not improved and Lyme specialist is relying on Neurologist to recommend as they feel IVIG is the way forward but have still not taken final decision.
I want some help and guidance on whether IV rocephin could help her as it did in the past to give her immediate relief from symptoms or we rely on IVIG treatment and hope for the best. IS there any other recommendations basis past expereince who can help ?
thanks,
Posts: 25 | From CT, USA | Registered: Jun 2010
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
In her case, she needs to have the best lyme doctor possible. The doctor is the key to getting rid of this horrendous disease. I can't emphasize that enough.
A lot of doctors treat lyme disease, but not many know enough to get rid of it for a person.
Please give us the name of her doctor. Do not show his entire name. Just give the first letter of his last name and the state he is in.
For example:
Dr. L in New York state.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Dr J in CT (for lyme) and Dr K in CT for neuro
Posts: 25 | From CT, USA | Registered: Jun 2010
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WildCondor
Unregistered
posted
Looks like if the names are right she already has the best Lyme docs. You have to trust them to help get her well! Good for you for being persistent!!
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Your daughter is being treated by the best pediatric lyme doctor in the WORLD.
He gets all the children well.
He has appeared in the full-length lyme movie, "Under Our Skin" and is discussed at length in the lyme book "Cure Unknown" by Pam Weintraub. He is also in the following video from a Boston TV show:
posted
Thanks TF and WildCondor for your inputs and it is reassuring that she is in good hands under these 2 doctors care.
Do you have any inputs on IVIG vs IV Rocephin for CNS lyme manifestations as we are contemplating what wud be better basis past experience ?
She had taken 4 weeks of IV rocephin in Yr 05 (when everything was dysfunctional in her body right from cognitive to motor senses, speech and nutrition) and then Yr 08 relapse happened with less severity symptoms. Drug IV Rocephin helped to improve all symptoms except walking. Please share experiences.
Posts: 25 | From CT, USA | Registered: Jun 2010
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Everyone is going to tell you to do what Dr. J suggests. Nobody is going to question his judgment. He knows a lot more about your daughter's case than any of us.
Is he asking you to decide on treatment?
IVIG helps some people and some people it doesn't help.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Thanks ..No he is not asking us to decide on treatment. He and Dr K are waiting for blood work results related to Immune System and post that will determine way forward .. whether to start IVIG or not which i suppose is Dr K's decision.
Posts: 25 | From CT, USA | Registered: Jun 2010
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posted
Do they need to be prescribed by doctor or can i buy OTC ...please guide and how did it helped in your symptoms ?
Posts: 25 | From CT, USA | Registered: Jun 2010
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
"She was put on IV rocephin for 4 weeks and in 6 months she regained all her functions except walking" Was she on IV rocephin for 6 mos??? I was put on IVIG and for me it did not work to alleviate the infections, but neither did 6 mos of IV rocephin.
Another member here who also was put on IVIG didn't have his symptoms alleviated, however he is responding to IV rocephin and IV zith. Wondering why they don't put her back on IVs if that's what worked before.
What helped me the most was antiparasitics. Dr.K. from Washington treats all of his patients for parasites and worms first before going after the other infections. He has worked in India with patients as well.
Not sure which Dr, K, you are referring to. If she responded to IVs, I am wondering why they don't continue with the IVs? I haven't heard of anyone actually putting Lyme into remission with IVIG. Maybe someone else has. Hope you find and answer for your daughter.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
Many thanks GLM1111 for your inputs. She took IV Rocephin for 4 weeks in Yr 2005 and then for 4 weeks in 2008 ...dats it and it worked miraculously. This was administered while she was in India under doctors over there. In 2008, we moved to US for her medical treatment as India still lacks experienced doctors and labs to treat lyme and co infections.
Can you also help in providing contact details for Dr K fm Washington. I was referring to Neurologist Dr K in CT who treats with IVIG.
Posts: 25 | From CT, USA | Registered: Jun 2010
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GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
can someone guide good source of energy vitamins or any other alternates for my daughter ? She is complaining of pain in shoulders, knees and lotts of fatigue. Her appetite has gone down in last 4 weeks since her symptoms started getting worse ...either it is a relapse or similar to what happened 2 years ago.
Posts: 25 | From CT, USA | Registered: Jun 2010
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tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
Has she ever been on Rifampin? My kids see Dr. J and I had to beg him to use Rifampin on two of them after the bactrim didn't fully get rid of the bart. It turned out to be a much better drug for my young children for bart than the bactrim. I would ask to give it a try.
I will send you a pm too.
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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posted
he has switched from bactrium to ciprofloxacin 10 days ago for bart.
Posts: 25 | From CT, USA | Registered: Jun 2010
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tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
That's good. She may still be herxing on it if you have noticed new symptoms such as shoulder pain since you started it. My kids had increased pain when starting Rifampin for bart treatment for about 1 to 2 weeks.
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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posted
thanks so much .. would it be possible to connect offline as i have few more queries ? let me know if that's fine with you.
Posts: 25 | From CT, USA | Registered: Jun 2010
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tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
yes, no problem. I sent you a private message...did you get it? You can respond that way if you like and it is private. Or you can provide your e-mail and I can contact you that way.
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Vitamins will not alleviate her symptoms if they are caused by infection. If she can't eat, you might want to try some healthy smoothies with yogurt/kefir and some greens.
Also there was a post here not too long ago about taking whey protein. The person said it alleviated their aches and muscle pain. Go to the search bar at the top and type in whey protein. Is she taking probiotics?
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
My daughter gets lotts of itchy n scratchy feelings especially at night which prevents her to have adequate sleep since last 2 weeks. What can we do to help her address this issue ?
Posts: 25 | From CT, USA | Registered: Jun 2010
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Wash and rinse with fresh squeezed lemon juice. It worked for me. Some have recommended washing in selsun blue. You can try both.
I like coconut oil after washing. Then repeat next day. The more you do it, with the more you treat, it will get better.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
so sorry she is going through all of this. i would look into dr k in washingtons treatment. there is a 87 page power point presentation worth looking at. if she can manage treating for parasites in the midst of this i would do it. i got a lot of intresting critters while i was in india and i was very very careful.
i would also consider reading the thread about the warnings about cipro. if she had problems with moblity prior you may not want to add to the possiblity of tendon problems.
i am not saying that she shouldn't be taking it if its helping but its good to be informed.
i wish all of you the best
Posts: 161 | From sonoma county | Registered: May 2009
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sammy
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Member # 13952
posted
If she is still feeling itchy at night you could try giving her some Benadryl. It is an over the counter antihistamine. It may also help her to fall asleep.
Posts: 5237 | From here | Registered: Nov 2007
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