LymeNet Flash: Please help!!!!!!

This is topic Please help!!!!!! in forum General Support at LymeNet Flash.

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Posted by Rgarfield (Member # 7409) on :

My 17 year old was diagnosed in January 05 with chronic neurological lyme. She was making some progress but has been totally disoriented for 3 days now. It is so hard and I feel like she is completely slipping away from me. I have been handlings things pretty well since January but this is practically like sticking a knife through my heart. I hurt for her so much, but I don't know what else I can do. She had blood drawn yesterday but no news yet. I just want my child back. Have any of you gone through this for this long?

Posted by treepatrol (Member # 4117) on :

I couldnt think straight for over a year forgot stuff all the time dazed, sometimes had a hard time talking forgeting what I was saying or what I was doing. Make sure she's taking all the really important suppliments, cq10,complexb vitamin,magnesium.

Shes on abx's right? Sometimes it gets worse befor it gets better pray for her.

Heres some links on this problem.

Psychiatric Lyme
Fallon & Tager Report
Duramater NeuroPsych Info Kids&Adults
Neurologic Lyme
Neurologic Lyme

Dirty Truth
Sporadic Schizophrenia
Psychiatric Manifestations
Columbia Lyme
Schizophrenia & Lyme Disease
Sunra links

Posted by sapphire (Member # 4599) on :

hi ,
is she on antibiotics at this time? if so it sounds like a herx. my symptoms like this flared up on herxes especially on minocycline

hang in there

Posted by Linda LD (Member # 6663) on :

Some other Mom's will be along.

My fakily is on the pulse method--but we just got to talk to Dr. J in CT and I hope he will be handling things soon.

When your daughter feels bad like this it may mean the abx is killing the bacteria. That will make you feel bad.

Your daughter is probably alright--but call the doctor if you are worried--do not worry your self sick--find out.

Posted by Lymester (Member # 5848) on :

It is my biggest anxiety provoker these days. I don't wish this on anyone have become obsessive with insect repellent. I have one daughter and like any severe debilitating illness you could avoid contracting, you pray that your child doesn't have to experience this.

It could very well be a herxheimer reaction. I've been having a flu-like, disoriented, extreme nausea every 4-6 weeks since being on antibiotics.

Keep us updated.

Posted by cbb (Member # 788) on :

Welcome to LymeNet.
So sorry your daughter is having to deal with so much. That makes it especially difficult for parents.

You aren't required to answer questions, but it would help people give opinions & suggestions.

What antibiotics(abx) is she taking & what dose per day?

Has she been taking enough high quality acidophilus to replenish the good bacteria?

Has she been checked for Co-Infections like Babesiosis, Ehrlichiosis, Bartonella?
Co-infections can cause neurological problems, especially Bartonella.

Is she seeing a Lyme Literate Med Dr (LLMD)?
Sounds as if she is - diagnosed with chronic neurological Lyme & apparently treated since Jan.

Disorientation could be -
a herx from treating the Lyme,
or co-infection.

Another possibility is Candida, a systemic yeast infection, which can cause neurological problems.
Abx kill good bacteria in the system along with killing the bad bacteria, so it is necessary to take lots of acidophilus to prevent the growth of yeast.
Symptoms of Candida overlap with symptoms of Tick-Borne Diseases (TBDs).

Print "Diag Hints & Treatment Guidelines..." www.ilads.org/burrascano_1102.html
It's 32 pages of excellent info by one of the best LLMDs in the country.

pages 24 & 29: Acidophilus
He recommends 2 capsules of high quality acidophilus with each meal.

If she's taking abx with meals, then plan something to eat with the acidophilus.
ALWAYS have 2 hours between abx & acidoph - before & after - or the acidophilus won't have a chance to help.

I always plan my acidoph 2 hrs after the last abx for the day. I feel like that gives the acidophilus all night to work before hitting it again with more abx in the morning.

Also eliminate as much sugar as possible.
Drink lots of water (with a squeeze of lemon juice in the glass) to flush the toxins out of the body.

In "Diag Hints & Treat...", read
pages 4-5 & 20-24: Co-Infections

Keep in touch & let us know how both of you are doing.
We care!!

Posted by janet thomas (Member # 7122) on :

You can help her mostly by being there and assuring her she will get thru this. Read up so you can explain it to her.

An excellent doctor is very important.

Was her doc highly recommended by support groups?

She has youth on her side. She'll probably improve rapidly. But there will probably be herxes along the way. Mostly I think it would help her to know that it will pass in a day or two (or 3 or 4??)