posted
Today my daughter and I went to her dr appt and it didn't go very well. She has Lyme and Bartonella. She has been taking Zoloft, Zithromax, Mino and pulsing Tindamax. She went from having hardly any neuro symptoms to now mostly neuro symptoms.
She is very forgetful, can't hold a train of thought, takes one college course and mostly recently forgot where the class was located, nauseous mostly all the time (dr said it could be because of brain inflammation).
Dr. wants to try IV Rocephin three days a week. So this is what we are doing. We were going to start today, but two of her veins collapsed because she is dehydrated. She hasn't been able to eat or drink much due to the nausea. We are both so upset about the outcome of today's appt. Dr. also wants to do another SPECT scan due to all the neuro issues. She has had one last year and they said it was very mildly abnormal and not to worry. I'm very curious to see if it has changed any since a year ago.
Anyone have any thoughts or words of wisdom. Me as her mom could really use some encouragement. Thanks for listening.
Posts: 107 | From New Jersey | Registered: Nov 2009
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posted
Lou - What does that mean...sorry if I sound dumb this is all new to me.
Posts: 107 | From New Jersey | Registered: Nov 2009
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Lou is suggesting that the rocephin be done by shots (injection in muscle= IM) in lieu of IV. Since your daughter has problems eating and drinking enough to keep her hydrated.
Posts: 3975 | From usa | Registered: Aug 2007
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posted
Do all meds IV add B-complex IV or sublingual is the must for problems your doughter has .
Must take Tindamax or flagyl when you take IV rocephin for at least 1 month no pulsing .
You will send all borrelia on cyst form with a strong drug like Rocephin if you don't take tindamax or flagyl to fight that.
Take something against yeast to(Diflucan or Nystatin) all the time on meds this is a must to .
Take microminerals and multivitamins .Epsom salt baths and detox products drink water 2 liters a day or more .
Idid all of that and had no problem with treatment.
Posts: 482 | From Nebraska | Registered: Feb 2010
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
IV glutathione is said to be very helpful in dealing with herx reactions and since she already has an IV you could ask for a script for it. It can make a huge difference in tolerating treatment from what I'm told. I'll be getting it with my IV treatment.
If that's not an option then up her detox for neurotoxins. See the work by the author of "Mold Warriors" for more info. Without it, I would not have been able tolerate treatment.
Hope she feels better, Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
She does not have a PICC or a Port for IV? You were going to do this with a one time device each infusion? This is what I assumed when you said her veins collapsed and she couldn't do the IV.
If this is the case, then rocephin or bicillin shots would be an alternative. But someone has to give these, either someone in the family that is trained or at doctor's office. There might be other alternatives but I have never done IM, so can't describe them.
Posts: 8430 | From Not available | Registered: Oct 2000
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Good point lou. I was assuming that the dehydration would be resolved (very important) and that she would be able to do IV.
IM might be a way to get started.
Terry I'm not a doctor
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
Well good news is that we went home last night and her stomach was starting to feel slightly better to where she could eat a little something and we pushed fluids all thru the night. Also later in the evening she ate a little more. This morning she ate cereal and drank a gatorade. We tried the IV again today and they were able to successfully get it in with no problem.
Hopefully this remains the case. Thanks for all your feedback...don't know what I would do without this site.
Posts: 107 | From New Jersey | Registered: Nov 2009
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posted
Hi tls....my son (20) diagnosed in 12/09 with lyme having slight neuro symptoms, now its over a year later and unfortunatley he's worse. Has been seen by LLMD since 02/10, on multiple meds including IV rocephrin, still no better. Switched LLMD's in 08/10 and on IV doxy since then and just started flagyl...no better but no worse either. I'm not telling you this to make you feel bad just know that it is a very long road for some (us) but I KNOW my son will get better. Hope your daughter does well on rocephrin, alot of people do. Just the past couple of days my son seems more alert, even said a couple of sentences, that's alot for him.
my initials...also tls Posts: 158 | From NJ | Registered: Jul 2010
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
tls, have they tried your daughter on Rifampin?? It has been a miracle drug for my daughter's bart.
She was so brain fogged that she couldn't do her school. We had to just quit all of it this time last year.
She is now doing a full course load.
She has been taking the Rifampin for six months now and doing great as far as the brain fog goes.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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posted
I'm pretty sure the dr said we will be adding that into list of meds soon. The dr just wants to get her stomach feeling better and get the IV going and then she said she is going to introduce a few new meds into the cycle.
Thanks for the info.
Posts: 107 | From New Jersey | Registered: Nov 2009
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