To Those on Rifampin????

So, tomorrow, the Dr. will prob. increase Andrew's Rifampin from 150 mg to 300mg.

I get it to take them separately and that it may really kick his butt, anything else I should know?

He had a bad week last week, glassy eyed, out of it, and yesterday and this morning, seemed great - but when he got home, the ticks and ocd were back with a vengence.

You all know he won't talk to me.... so what do you think is going on with my 16 year old boy????

Miss him!

LCM:

Already another appointment? It seems time went by so quickly and you just had one! I hope your visit will be blessed with answers and a good protocol for A. Hugs to you and A!

If I were in your situation, I would ask the doc to look into other reasons he is not improving dramatically yet, after over 6 mo of treatment.
*KPU--is a condition that makes lyme healing very difficult and the immune system lacks zinc--if you need more info please ask; KPU is also caused by Lyme in many patients and over 70% of Lyme patients (I don't remember the exact figure) also develop KPU after getting infected with lyme bacteria
*Heavy metal toxicity (which causes neuro symptoms, also)
*Mold--we all have been exposed to it and it can mimic symptoms of neuro Lyme & company
*detox agents for ALL toxic substances including lead, alluminum, etc because I am not sure Pinella works on all agents--I would ask the doc about it

A good detox agent I found is Chlorella which have done wonders for my kids, especially the 5 year old and the 10 year old. It works as a binder detoxing the blood and is routing toxins to go out in the poop rather than through the liver and kidneys, which are already overwhelmed from the abx.  It also contains lots of nutrients and vitamins and I no longer give my kids vitamins.

Do you know if Pinella works as a binder as well? Most detox agents need a binder in order to work or at least that is my understanding.  I do not remember you mentioning A is using a binder in his protocol.

A good detox for heavy metals is cilantro--it is overlooked by many docs, unfortunately. Again, it needs a binder to work. Without a binder, the toxins are just moving around the body but are not eliminated  as they should. We all have heavy metals from what they now spray in the air: mercury (yeah, this too!), alluminum, barium, and who knows what else?

I know that you are set on abx and I don't blame you--they work for many people and they worked for me. But if A. is not improving, maybe is time to study some herbal protocols and see how it feels to you from what you are reading. There are thousands of years behind some of those plants and it seems too many of us get sick now with all kinds of disease in this "modern" society.  Please remember that all meds have heavy metals in them, including some of the vitamins, and long term, if someone's body is not detoxing well, it will cause build up, which leads to neuro symptoms.

As you may remember, I did abx only but I did not know then what I know now. I discovered how many unwanted substances and chemicals are in abx and what they do long term. I was very lucky because I detox well and I continued to improve. Some people are not so lucky and you can see that here, what pain and sorrow many members are going through. You'd be suprised if you start to research more and more into this and probably you will reach the same conclussion how many "discoveries" in pharmaceutical industry are copy cats; they use molecules or whatever else from plants, to start with, in a lab... The additional benefit with plants is that they do not leave traces of heavy metals in the body... We have so many plants available still in organic form (well, minus whatever they are spraying from the skies)... Just something to consider... and by all means, I do not tell you what to do or try to "push" you to switch to herbals, but merely I am sharing the potential of other protocols that you have not yet explored. Don't give up hope, and keep researching, you will get Andrew back! You are doing a fantastic job! Also, I would ask the doc about a binder if I were you. Does Pinella work as a binder? I don't know!

My 10 year old son is doing much better and my 5 yr old as well. My 9 year old seems worse than the other 2, but it is nothing compared to A.

Hugs to you and A :) I hope he finds some relief soon.  You invested so much in his health and he is so young, he suffered long enough.

Post Edited (Simela1) : 3/26/2015 1:13:26 AM (GMT-6)

I know when I was ill I had some pretty horrible thoughts about my loved ones and when my grandson was ill he would scream at me that he hated me. It may be that your son is not talking to you because he doesn't want to say the things that are going on in his head. He is old enough to know that keeping his mouth closed is the surest way to ensure that nothing bad gets said.

You are doing the best to help him and he does love you.

I'm currently on Rifampin for Bartonella. I take 300mg 2x a day and while I was herxing pretty badly in the beginning, it seems to be tapering off. Still having a tremendous amount of foot and shin pain, so using some prescription meds for that from the foot doctor. I think it's very hard for the kids to express themselves and how they feel. I know my daughter is so sick and tired of feeling sick and tired. She just wants to wake up one day and feel good! She is worse after a day of teachers and homework or doctors so maybe he's feeling a little run down and that's when the symptoms flare up. Hopefully, the rifampin helps.

I sympathize with you LMCM - 16 year olds WITHOUT lyme disease are sometimes hard to handle.

Don't worry, he will come around once he's feeling well, and he will be thankful for all your determination and caring for him.

hang in there, you're doing a wonderful job.

Thanks Girlie!

CTW, are you in NJ and going to holistic healer? We may have mutual friend... are you going to the seminar?

thanks, LMCM

Candle:

May I ask what products you used for your son and for how long?

Thanks!

LMC:

I'm still waiting for the IGENEX tests to come back. So my son is still not on any treatment. My son has changed too (behavior/temperament etc, but I am not worried about it if the other symptoms improve. We don't have an easy job and we can only do what we can do...

Simela,

We've been doing the NB protocol about a year;

www.lyme-morgellons.com/home.html

We are better than 10 months ago when we started also. The raging was gone around Thanksgiving, and I catch a glimpse of who he was occasionally. The rest of the world loves him, he's his charming self and hides ticks and ocd, but for me he has no patience or tolerance. Guess it's cause I make him do the "hard stuff" and always bring him healthy food and meds. What teen likes all that... hard to tell teen hormones and/or lyme attributes.

We'll get there, you are awesome caring for all of them and yourself! Your son will be forever grateful as he is well, enjoying his grown up years. He probably won't even remember all this, or your other children! (But you will and always watch for changes if it starts to return... another reason they are lucky to have you!)