LLMD appt. Monday and need advice about my son

DS has late stage lyme. Since he was seven (tested negative after two ticks found in ears but I didn't know test would be negative right away). Fast forward he is now 14. Lyme awakened after sustained concussion Jan. 2016.

Tested Postive November 2016. Tomorrow ends week eight of abx. treatment.

First four weeks he was 5 days on/2 days off. At week four I asked if the two days off could be school days so he could feel halfway decent. I was then told 7 days on because of concern about kidney infection.

Last Friday LLMD said he wants son off of all meds next two weeks (this would begin Monday) to see if any symptoms come up. This goes against what he first said and I am meeting LLMD again to discuss this.

Here are my son's symptoms right now:
-Still neuro stuff: acts younger than his years. Has different tics- latest is smacking his lips together and making noise)

-Paranoia/anxiety that didn't exist before: worried all food will give him some type of food poisoning. Asking me lots of questions about food, etc...

-Feeling blue: (but I think it is the Malarone) he hates it.

-Backtalking/fresh tone: never did this before but he could also be stir crazy

-Wanting to be someone else: Talking in English accent then saying he was British in past life. Watched Harry Potter this week and keeps saying how he wants it to be real and he wants to live there.

-Low stamina/listless

-Chest pain/cough: Think from malarone

-Headaches: Seem to have gotten better.

-Last week had red, burning hands. Hands still super chapped but that was a one off.

-This morning he showed me a 1" raised horizontal line on his forearm. Looked like a scratch and he says he doesn't know it got there.

He has been on Mino/Zith/Mepron switched to Malarone at week four. He is on a lot of supplements and detoxes a lot: Lemon water all day, Yogi detox tea 2-3x, dry brush, epsom salt baths, ASG (a lot for a of detox for a teen!)

Sorry this is so long: does this sound like he should have a two week meds break? I'm concerned about more bacteria getting in.

I like LLMD a lot. I think he is very kind, compassionate and just was probably off his game last week. We were last patients of the day and were asking too many questions. I feel like he will do what we want -in other words if I am really concerned he shouldn't take a med break, I think he will honor that concern.

Need my experts to weigh in. Thanks!

Hi Huddie -

It seems like your son and I have been diagnosed at roughly the same time and have similar meds. My main problems in order are babesia and then lyme with some other co-infections. Like him, I started out on doxy/zith/mepron for about a 6 weeks then recently switched to mino/biaxin/malarone. I was also given cholestryamine to bind the neurotoxins and to prevent them from being re-absorbed into my blood. I recently added boluoke/serraflazyme to break down biofilms. This last measure has helped me make some breakthrough in the last few days. I know the time-frame is short, so I can't be entirely sure but I think it might be worth asking LLMD to deal with cysts and biofilm if you suspect that your son has had this for awhile.

One other question you can ask the LLMD is what he is trying to accomplish by being off the meds? My doctor mentioned the same thing and when I asked him, he said for my detoxing to catch up to the killing of bacteria. I said I would rather stay on them and deal with the herxing.

Good luck and pls let us know how the appt goes.

While I can understand a 'break' for a couple of days...if he is having horrible herxing - but two weeks?

..and the reason...'to see if symptoms come up' um...doesn't he have enough symptoms currently to gauge treatment?


Sounds like maybe the Dr. is overloaded...and doesn't have time to really look thoroughly at he patient's information....maybe?

Girlie,

Thank you! How are you feeling? Are you better? Hope you are sleeping better and herxing less.

I agree, think he was overloaded, didn't read file properly and was trying to deal with all our questions.

Monday will be a better appointment - I hope.

Huddle the random scratch that came up is bartonella scratches will rise during treatment :/ also a big cause of depression and anxiety

And isn't eight weeks on two weeks of the way that dr. J does it the one in Washington, D.C.?

No girlie according to my friends now it's two weeks off after multiple weeks. I think pulsing is going to start becoming more common now that's one of the main things dr Horowitz is going to talk about in his new book.

Girlie said...
I do know someone still on the 2 week on 1 week off protocol...so maybe it depends on the patient.

I am interested in whether Dr. Horowitz talks about pulsing for the co's...because up to now...many LLMD's will say only for Lyme, and not the co's.


When is his book out? Is there a date?

Valentine's Day (2/14/17) and I see on Dr. H's website that it can be preordered:

www.cangetbetter.com/

Dr H's book can be preordered on Amazon as well.

Jenny, Can you speak more to the philosophy behind two weeks off?

My son was on 5 days on/2 days (weekends) off. At four weeks I asked if it the two days could be changed to school days (so he could function better at school).

LLMD then said no, due to Babesia he wanted him on for 7 days. So for his first 8 week protocol his last four weeks have been 7 days.

NOW LLMD is saying two weeks OFF. Which begins Monday. He said he wants to see what symptoms come up without meds in his body.

I do NOT want to give the bacteria a chance to move back in.

Meeting with LLMD on Monday to discuss. Would love my son to have a meds break but also want to treat aggressively.

Thanks.

Girlie,

Really? Well that makes me feel better! I would like him to have a break.

That said, it has only been eight weeks. I wasn't allowed to take a break at eight weeks. I wanted one.

I will make up a list of questions and you know I'll be sharing what I find out with you guys.

Girlie,

That makes sense. It will be my number one question.

He did say that he wants to see what symptoms come out without abx. and that while he is on the two week break he should be doing extra detoxing and taking BB-Tox-Ease, BB-1 and BB-Babs 1.

I don't want to start and stop herbs though so if he does well on the BB products (I'll go low and slow), I hope he can continue.

Huddie and girlie Ima go ask my friend who sees dr j right now about the two weeks off lol hold on

Ok girlie and huddie my friend says he starts as two weeks on one week off then after six months it's two weeks on two weeks off and eventually one week on three weeks off. :0 I didn't know that lol she said that's the way he's found to be most effective to kill Lyme and get patients better as quickly as possible with the least amount of meds but sustained improvement and remission

Thanks Jenny and Girlie,

I so appreciate you checking up for us. I am not going to let my son be off meds for more than one week. It has only been eight weeks of treatment.

Don't want to run the risk of bacteria creeping back in.

Will keep you posted.