Re: Being torn in different directions!

[Guest guest]

When I started researching autism, I was over-whelmed with all that I

learned. I imagine everyone goes into shock when they start learning

about vaccines, toxins and such. Once I learned that kids were

recovering, I jumped on the band-wagon. I did a lot of research and

really focused on what recovered parents did. The number one thing I

saw reversing autism symptoms from posts on forums was treatment for

lyme. I actually still didn't think it pertained to us until I

started seeing reports by doctors that stated that most of their

patients with autism had lyme. I then got serious and really

researched lyme and autism and found it fit. I still believe all

those other things contribute or cause autism as well. It's likely a

group of things together causing the symptoms. But, I think the

bottom line is whether or not treating for lyme is ridding symptoms.

I have seen too many posts stating it was, so I believe in it. My

children lost symptoms from it, and are in managed recovery. But,

they are dependent upon diet and supplements to keep them recovered

enough to do regular school without modifications. Considering they

have only been on lyme treatments for about 9 months, but DAN

treatments for about 2 years, I feel blessed. I hear it takes two to

three years for most. I hate to put a number on it, because I have

seen from two months to over 50 years of treatment. So, it's not the

same as taking antibiotics for two weeks for an ear or toe

infection. I think our children also have a lot of damage, and the

repair takes quite a while. Most who have symptoms who were severe,

report they feel they will likely always have to be on something. I

am siding with the doctors who feel there is an incredible lyme

epidemic going on. I have just seen too many posts and You-tube

videos of incredible recoveries from treating for lyme. If they

don't have lyme, they have something that gets killed from lyme

treatment because it's working for them.

As far as the MRI goes, I don't remember reading its needed for a

lyme diagnosis. Most of the posts I see on MRIs and autism, state

they are normal. Some do have abnormalities. I think you have to

decide what's best for your child. Some with lyme have abnormal

MRI's, and some do not. I have seen many state they had an abnormal

MRI, had lyme treatment or some other treatment, and then their MRI

was normal. Autism recovery is a journey, full of all kinds of

decisions I wish the medical world was better at helping us with.

Nearly all of us get conflicting medical advice. I pray and go with

my gut.

Love and prayers,

Heidi N

>

> Where do I start?

>

> Recently I had posted that my son had 3 bands positive (41, 58, 66).

>

> We had gone to a local dr who treats adults, we have appt with Dr. J

> in April.

>

> So we went to the pediatrician (who I trust, and who is wonderful),

> well he thinks my son is NOT lyme positive!

>

> He basically said that DS should NOT get an MRI because there's no

> need for it, and the sedation could harm him or he could not wake

up.

> He said all these docs are quacks, and that there's no medical proof

> that shows there's a relation between lyme and pdd (neurological).

>

> Now I have the Rx for Omnicef waiting for me at the pharmacy since

the

> other doc called today to start my son on something before he gets

the

> MRI.

>

>

> WHAT SHOULD I DO??? I can't think anymore!! And I'm afraid that I

> could make the wrong choice if something bad happens.

>

[Guest guest]

I could not have said it better myself Heidi! I have had Lyme for 15 years misdiagnosed. I have 3 children that are all infected with Lyme disease. Two of my children have an official diagnosis os autism. We are getting my third evaluated and digging a little deeper but you HAVE to do your own homework. NO ONE loves your baby like you do. No one is going to go the extra mile for him like you do. We are our best advocates for them, if I ever had an inkling that my children were infected with Lyme disease prior to me finally doing my own major research after I was infected for 15 years then maybe my kids would not be in the position they are in. DO NOT let a doctor convince you that there is NO chance of your son having Lyme disease. If nothing else be objective and non biased, start your son on omnicef and look for improvements. It may take a while to see

anything but keep with it for a while. Actually he may get worse for a while due to a herx reaction (die off). Take him to see Dr. . Just be sure that you do monthly or even bi-weekly blood panels to monitor his CBC levels. Contrary to popular belief MOST of the time long term antibiotics are harmless. Does that mean that someone can't have an allergic reaction, no but if you are monitoring blood work and know warning signs go with your gut. My children have been on antibiotics for over a year now and are seeing so improvements. Yes it is slow progress but at least we are moving FORWARD!

Kari

Subject: Being torn in different directions!To: BorreliaMultipleInfectionsAndAutism Date: Monday, December 8, 2008, 6:04 PM

Where do I start?Recently I had posted that my son had 3 bands positive (41, 58, 66).We had gone to a local dr who treats adults, we have appt with Dr. Jin April. So we went to the pediatrician (who I trust, and who is wonderful),well he thinks my son is NOT lyme positive! He basically said that DS should NOT get an MRI because there's noneed for it, and the sedation could harm him or he could not wake up.He said all these docs are quacks, and that there's no medical proofthat shows there's a relation between lyme and pdd (neurological) .Now I have the Rx for Omnicef waiting for me at the pharmacy since theother doc called today to start my son on something before he gets theMRI.WHAT SHOULD I DO??? I can't think anymore!! And I'm afraid that Icould make the wrong choice if something bad happens.

[Guest guest]

So I wanted to add that if your sons MRI is fine that that DOES NOT rule out Lyme Disease. My 5 year old has diagnosis of PDD, chronic strep and a pnemothorax at birth (collapsed lung) my oldest son age 11 has been diagnosed with ADD, ADHD, Tourettes, depression, and in the process of having him tested for Asperger's. My 10 year old diagnosed with ADHD, Asperger's, anxiety/panic disorder. So I can relate to your pain and frustration x's 3. I think you know in your heart what you need to do you are just afraid to do it. I have a mother that almost daily makes me stop and question if I am doing the right thing for my kids. Everyday I am reminded about super bugs and bacteria that are resistant to antibiotics and sometimes I really do question and think about the what ifs but the bottom line is what if I don't is my child going to be in and out of prison the

rest of his life from having an infection in his brain that impaired his judgement with no mercy? What if my child commits suicide with Lyme patients are at higher risk for. What if he is disabled the rest of his life physically from this painful disease. What if he can never live on his own because he can't think and function on his own due to Lyme Disease. The list can go on forever but the CHANCE of a devastating result of antibiotics COMPARED to what can happen with long term effects of Lyme in my book there is no comparison, if any one of us die I DO NOT want it to be from Lyme. PERIOD. It makes me angry to even think of the neglect from alot of the doctors on behalf of Lyme, don't let anyone take you for a ride. Do your homework, get pro's and con's find out both outlooks on the situation then make an informed decision. The sad fact is is that alot of doctor's aren't even checking out the other side of the argument, if they did they may

scratch their head and wonder well MAYBE there could be something to this. MAYBE, MAYBE, MAYBE. I think that the more you dig the more you find and learn.

Kari

Subject: Re: Being torn in different directions!To: BorreliaMultipleInfectionsAndAutism Date: Monday, December 8, 2008, 8:34 PM

It's reassuring to know that other parents are going through the samething and that I'm not alone.My son had shingles at age 2 and is DX'd with PDD, adhd, tourettesyndrome, anxiety disorder, (odd? & ocd?) so there's a lot of thingsmanifesting in this child.I just pray we make the right decision. I have already decided Iwanted to try the omnicef. We're gonna start it tomorrow.The MRI is to determine if there is any neurological issues, to ruleout P.A.N.D.A., shingles, or lyme.> >> > Where do I start?> > > > Recently I had posted that my son had 3 bands positive (41, 58, 66).> > > > We had gone to a local dr who treats adults, we have appt with Dr. J> > in April. > > > > So we went to the pediatrician (who I trust, and who is wonderful),> > well he thinks my son is NOT lyme positive! > > > > He basically said that DS should NOT get an MRI because there's no> > need for it, and the sedation could harm him or he could not wake > up.> > He said all these docs are quacks, and that there's no medical proof> > that shows there's a relation between lyme and pdd (neurological)

..> > > > Now I have the Rx for Omnicef waiting for me at the pharmacy since > the> > other doc called today to start my son on something before he gets > the> > MRI.> > > > > > WHAT SHOULD I DO??? I can't think anymore!! And I'm afraid that I> > could make the wrong choice if something bad happens. > >>

[Guest guest]

I am soooo lucky that I kept my appointment with Dr J. I made it 6

months prior, just to rule out lyme. After speaking to him, he was

sure I had lyme. In retrospect, rather than waiting for the Dr J

appointment I should have gotten myself to a lyme dr right away to

rule it out.

If you are wondering if YOU have lyme and want to work with someone

right away, I have a very good lyme practitioner that is a NP that

works by phone and can order the tests, etc. She can usually get a

new patient in within 2 weeks. She runs the Fry photographic blood

smear, CD57, igenex, vitamin D, iodine and lots of other secondary

indicators. She has several patients with ASD kids and think most

have bartonella. She is also open to testing other family members as

she knows lyme can be contagious. Her treatment protocol is mainly

antibiotics, although she recommends lots of remedies for detox. She

used to treat bladder/infertility issues, she has had lyme and she

later figured out her bladder/infertility patients had lyme too. She

is a very good diagnostician -- can tell you what you have based on

your symptoms. If you are interested in getting started on yourself

quickly, I can let you know how to contact her.

Caryn

Caryn

>

> Where do I start?

>

> Recently I had posted that my son had 3 bands positive (41, 58, 66).

>

> We had gone to a local dr who treats adults, we have appt with Dr. J

> in April.

>

> So we went to the pediatrician (who I trust, and who is wonderful),

> well he thinks my son is NOT lyme positive!

>

> He basically said that DS should NOT get an MRI because there's no

> need for it, and the sedation could harm him or he could not wake

up.

> He said all these docs are quacks, and that there's no medical proof

> that shows there's a relation between lyme and pdd (neurological).

>

> Now I have the Rx for Omnicef waiting for me at the pharmacy since

the

> other doc called today to start my son on something before he gets

the

> MRI.

>

>

> WHAT SHOULD I DO??? I can't think anymore!! And I'm afraid that I

> could make the wrong choice if something bad happens.

>