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Posted 5/31/2012 8:41 PM (GMT -5)
Hello Everyone,

My daughter had a follow up appointment with our LLMD today. I always leave the office with so much new information that I can't process it all. I was wondering if anyone could help guide me in the right direction for the newest information we received.

Currently, my daughter is taking 2 antibiotics, and a host of supplements. She has been having a strong herx reaction, which is causing her not to sleep. Our doctor has been "tweaking" her treatment weekly and bi-weekly, but nothing has helped. She has now decided to put my daughter on a third antibiotic, while she continues the other two. She explained that one antibiotic is attacking the lyme, one is attacking the co-infection, and the third is going to hit the lyme at a cellular level. I am very confused, and not really sure if my wording is correct. Does this sound familiar to anyone?

I'm a big believer in research, I think it's the best way that I can advocate for my kids. I'm trying to become as familiar with every new idea and terminology that is presented to me.

Thanks for any help you can give me!!
Posted 5/31/2012 8:51 PM (GMT -5)
Yes.. This all sounds very familiar to me. Lyme is hard to kill off because in hides in the muscle tissue and something called biofilms which protect it from antibiotics. My LLMD also prescribed me 3 antibiotics at the same time to attack and kill off lyme and co-infections. My doc changed antibiotics frequently to systematically go after the lyme and co-infections.

I hope your daughter sees some improvements soon. She is lucky to have a supportive mom who does her research. :)

Peace&Healing,
Gary
Posted 5/31/2012 9:58 PM (GMT -5)
Yes it also sounds familiar to me. Certain antibiotics work best against lyme while certain other ones cross the brain barrier and will be able to get at the bacteria in hard to reach places. Lyme is just so complex that it is best to pound it from a bunch of different angles.

Does her doctor know she is not sleeping? Because sleep is crucial to healing.
Posted 6/1/2012 4:12 AM (GMT -5)
My LLMD uses a similar approach. I have also heard that using multiple antibiotics at the same time helps to avoid resistance from developing.

Different meds work for different co-infections as well. Mepron for example is a medication used for babesia, but it really doesn't do anything for Lyme or bartonella as it attacks protozoans, not bacteria.

Another thing that may eventually be added is a "cyst buster." This will probably be Flagyl, Tindamax or grapefruit seed extract or other herbal products. This helps to break up the cystic form of Lyme so that antibiotics can work and relapse is less likely.
Posted 6/1/2012 5:57 AM (GMT -5)
Your daughter's doctor is taking an aggressive approach to the diseases your daughter is fighting. He must want to make some progress quickly.

Are you helping her out with a detox regimen? It could really relieve her herx symptoms.

My heart goes out to you. It must be so hard to watch your daughter go through this.

I agree with springsjean that you need to address your daughter's lack of sleep. There are several different herbal remedies that can help, or something like SAM-e. It would be well worth a call to the doctor's nurse to get some guidance.

Take care!
Posted 6/1/2012 12:29 PM (GMT -5)
The others have all given great responses - I know it's hard to take it all in! Years into all of this I still have to shrug my shoulders and say, "Eh, who knows?" with some of this stuff! I still can't remember which abx do what, but I found the description here http://www.lymebook.com/top10forms really helpful in the beginning after my doctor had explained the different forms the bacteria takes, and then going home and thinking, "wait...what?"

Is your daughter doing anything to address detoxing? With all that's going on with the infection(s), plus herxing, plus normal junk in our world we have to detox, we need to help move things along however we can. There are a lot of great threads on detoxing here on the forum if you want to use the search function!

I hope your daughter feels better soon!
Posted 6/1/2012 8:14 PM (GMT -5)
Thank you so much everyone. It's so nice to have somewhere to ask all of these questions, and know people really want to help.

We are in to see the doctor weekly right now. She is aware of the sleeping issue and has been making changes in my daughter's protocol to try to increase sleep. This was her last resort, putting her on a third antibiotic. We are treating the sleep issue with detox aides (LiverTone, KidneyTone, DrainageTone), melatonin, detox baths, foot baths, and brushing. She does an Ondamed treatment 1x a week. We have also tackled her diet. She is 2, so it's very difficult to explain to her why she can't have starches. It's been extremely limited though, and I am baking everything using honey. She is only having natural sugars in fruit. We realize that fruit should be taken out as well, but again, it's hard to rationalize with a 2 year old.

We have gotten to a better place with sleep. When we first started treated the co-infection, she was only sleeping 3 hours a day (from 15 hours before treatment). We have gradually increased it, so she is now sleeping 10 hrs at night - but only after taking a large dose of melatonin and then being driven in the car. Her body still won't allow her to sleep during nap time, even though she begs for it. It's heart breaking to watch.

Our doctor is treating it aggressively. The reason is that my daughter had a loss of language because the infection hit her brain. Traditionally, our dr doesn't treat so aggressively.

Thank you again. I really appreciate your help!
Posted 6/2/2012 9:07 AM (GMT -5)
I'm so sorry to hear what's going on with your daughter! It sounds like you're in good hands, though. I'll be sending some positive thoughts your way!
Posted 6/2/2012 1:24 PM (GMT -5)
Hi Lymemommy!
I wanted to say first of all - good for you for doing all that you can to help your little angel!

There are some really helpful responses given here, but I would like to add that I'm one who - at the age of about 44 or 45 - ended up with the brain infection from Lyme as well, but have recovered remarkably from it! Although it was really quite scary to go through as an adult, it's also harder to heal from such things as an adult, so my hope is that this post will be reassuring to you.

Keep up the good work!! You and your little girl will get through this!!
Posted 6/4/2012 6:53 PM (GMT -5)
Hi my daughter just got diagnosed with Lyme after being sick for years. We are just meeting with the Lyme specialist tomorrow. It sounds like a long road but we are ready for it, at least I hope so. Any advice would be very welcome. She was negative on the cheap elisa test but going to igenix yielded 6 bands positive.
Posted 6/5/2012 7:17 AM (GMT -5)
Sorry to hear about your daughter. This forum will be a good place for you to ask questions. A book that I found to be very helpful when first starting in this world is, The Top 10 Lyme Disease Treatments by Bryan Rosner.
Posted 6/5/2012 8:13 PM (GMT -5)
Hi blown away - welcome! It may be a long road ahead, but luckily more and more is being learned every day about how to heal from these infections! Being ready for it - having the right attitude - is sometimes half the battle! I would suggest looking through the "new to lyme" thread - there's a lot of great information there to help prepare yourself for the journey ahead. Best of luck, and don't be a stranger!
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