Son is sick every night -new med suggestions?

Didn't you work extensively on him for his digestive problems? I may be confused.

Huddie, man I feel so badly for him. Poor kid. I don't know if the Mino or Malarone can be lowered in dosage?
I wouldn't think Zithro would give him those symtoms.

Since all of the things he's feeling are fears and anxiety based, lets put our heads together and see what might calm down his nervous system.

A calming tea in the evening?
Relaxation tapes? What can you think of that he would enjoy and relax with?

Huddie - I am so sorry your son is suffering with this.

... with mepron (in the malarone) - Sleep issues and nausea can be a side effect..so, those two symptoms may not be part of a herx.

Hopefully with time, those side effects will go away...

Maybe change your title of the thread to add "malarone" to it. Hoping others' will post and share their experiences.


Sending hugs to you and your boy.

Huddle I am so sorry about your son.

Here are the tests that Dr. F does for psych and neuro symptoms to check for encepelopathy and brain inflammation:
1.) paraneoplastic panel
2.) NMDA receptor antibodies
3.) 4 channel receptor antibodies
4.) k channel receptor antibodies
5.) glutamine receptor antibodies
6.) Cunningham panel from moleculera labs

Maybe he can see Dr. f and dr crj? They collaborate on pediatric neuro/psych cases

You guys are the best.

JDF, thank you! Can you email me the full name of Dr. F. I may switch or certainly get a second opinion and the tests you mention. I have had it with our LLMD. It is impossible to get through to the office and get an answer. I'm not a high maintenance patient at all but when I am paying almost $1K a visit and I call every single day saying my son is having kidney pains, panic attacks, etc... and I get no answer. Urgh. Vent over.

July, Thank you for the comfort and the wonderful suggestions. I do sit with him and do energy/prayer work. I tell him he will be ok and it's the medicine, the lyme, not him, etc... he has a runaway mind this boy.

Girlie, Thank you. Your information is so helpful. I had no idea about the Malarone. I had a suspicion that it wasn't working for him and the feeling that he doesn't even have Babesia. I didn't give him his night dosage.

We'll see. Thanks- you guys are the best - and I hope you are all having a good week.

Bluelyme,

Thank you. I forgot about the Mepron 'blues'. Happy to report that no Malarone last night and he slept. It may be that.

Thanks for thinking of me. I'm doing herbs, homeopathics, lots of detox, supplements and clean diet. Just need to up my herbs - but the herxes are so bad for me that I wanted to wait until the holiday was over. I even kept up with herbs/detox/diet through holiday with just one small cheat. Worth it!

We are doing a machine - I may be Rife. Have to get name of it. It definitely does 'something' helpful because I sleep so well the night after we have it and then I feel a slight herx the next day, we both do.

Thanks BL!

Trav,

THANKS! I hope you are well. Thanks for the support, as always

Blueberry,

Thank you. I do have Passionflower but have been giving him Valerian. Do you like Passionflower more than Valerian? Thanks!

PMM,

Thank you. This is a new thing and I have a feeling it may be the Malarone. He's also learning that when he doesn't detox or eat well it is worse.

I think he has been officially scared straight. He slept last night. Cue the angel music.

Blueberry,

Thank you Blueberry. Bone broth is a great idea. I have been skipping mine this week. Have to get back to it.

Hope you are having a good day.

Hi Huddie,

Long time, no talk - sounds like we are both dealing with stuff and you and your son are experiencing all the early treatment herxing/worsening before better stuff - ugh.

If I recall your son is barely getting a break from the meds and does 5 days on/2 off, right? Over time and at about 6-8 weeks, DS was having a terrible time (I think it took that long for everything to get backed up/clogged). Anyway, LLNP decided daily mino for DS was just too much as it caused a lot of herxing which was cut significantly when he cut back to mino/3x a week. I hope you can discuss with your LLMD. Our LLMD/NP practice believes that patient comfort/well-being is important esp for kids/teens and as part of promoting healing which means slowing treatment/changing it can be done.

Also, on the home front, as much mopping up with charcoal, chlorella or diac earth as possible may help some. I do recall some folks having reaction to chlorella so I decided not to add that one in. I can't remember exactly what it was though.

It typically does get better over time and I remember a few times when we were contemplating going to the ER with DS during the early months of treatment. Those are stressful times and hard decisions to make.

Hope your words come back and your DS finds some relief soon!