I'm very worried.....please help.

August 2, 2010

We went to Dr. J. this past wednesday, was diagnosed with Bartonella and

and now the lyme meningitis turned into encephalopathy. we were told he has alot

of problems from ths Lyme disease. He had 18 vials drawn yesterday, they're

testing for so many different things, co infections, lupus, mono, I dont even

know what else...anyway he was put on cipro and azithromycin for a minimum of 9

months. Also tindamax he has to take every week for 2 consecutive days. he

started the other 2 abx. tonight but since he has summer school I dont know

whether to wait till next weekend so I can monitor him or start him now. They

say there can be severe reactions with that including seizures, paralysis,

bell's palsy, STROKE, etc. But these reactions can come from the disease too.

What do I do ?? What is encephalopathy ??

August 2, 2010

you are with the best Dr. ever! He is our doc too....I've found that the

information is so overwhelming, and so much of it looks so grim...but we are

in a better place knowing what is wrong with our child! I've found that

going to " Dr. Google " on the side was something I had to stop doing, and

place my faith in Dr. J. If there is any problem, he will help out, and

amend treatment. He's never been sued for malpractice, and I don't think

has any horror stories...You HAVE to treat the co-infections, etc...so this

is a time that is about doing that. my daughter has shut down bone marrow

due to lyme and anaplasmosis, and she is sick...and the lyme die-off makes

her sicker at times. but I just try to remember that we are ending up in a

better place in the long run. He's sick with bartonella, and unfortunately,

in order to kill it you have to have him on some serious meds. Make sure

you are doing lots of pro-biotics, and have him on an allergen free diet

(anti-infamatory). The rest is unfortunately out of your hands. I know

that that is not terribly comforting...but I want to tell you that I

undestand, and it is really overwhelming. Good attitude means so much as

well...I can tell that my daughter feels worse when there is stress in the

house,. or when I am worried and freaking out. so, the best thing I can

offer is...I feel you, and stay away from Dr. Google (or bing, or other

similar Dr.). Many blessings your way!

On Sun, Aug 1, 2010 at 10:50 PM, Tiffanie <tiffanies_towing@...>wrote:

>

> We went to Dr. J. this past wednesday, was diagnosed with

> Bartonella and and now the lyme meningitis turned into encephalopathy. we

> were told he has alot of problems from ths Lyme disease. He had 18 vials

> drawn yesterday, they're testing for so many different things, co

> infections, lupus, mono, I dont even know what else...anyway he was put on

> cipro and azithromycin for a minimum of 9 months. Also tindamax he has to

> take every week for 2 consecutive days. he started the other 2 abx. tonight

> but since he has summer school I dont know whether to wait till next weekend

> so I can monitor him or start him now. They say there can be severe

> reactions with that including seizures, paralysis, bell's palsy, STROKE,

> etc. But these reactions can come from the disease too. What do I do ?? What

> is encephalopathy ??

>

August 2, 2010

Hang in there. There's light at the end of the tunnel. Your going to the best

doctor in the country. Everyone has different reactions and herxheimer

reactions. You will find out what works best to battle them and what makes him

most comfortable. Some people don't have bad reactions. So good luck.

Suzanne

Sent from my iPhone

On Aug 1, 2010, at 9:50 PM, " Tiffanie " <tiffanies_towing@...> wrote:

> We went to Dr. J. this past wednesday, was diagnosed with Bartonella

and and now the lyme meningitis turned into encephalopathy. we were told he has

alot of problems from ths Lyme disease. He had 18 vials drawn yesterday, they're

testing for so many different things, co infections, lupus, mono, I dont even

know what else...anyway he was put on cipro and azithromycin for a minimum of 9

months. Also tindamax he has to take every week for 2 consecutive days. he

started the other 2 abx. tonight but since he has summer school I dont know

whether to wait till next weekend so I can monitor him or start him now. They

say there can be severe reactions with that including seizures, paralysis,

bell's palsy, STROKE, etc. But these reactions can come from the disease too.

What do I do ?? What is encephalopathy ??

>

August 2, 2010

Tiffanie, I know how overwhelming all that news is. My daughter sees Dr.

J also and has for 6 years now. She too is treated for Lyme and

Bartonella and has also been treated for Babesia, and a list of other

coinfections. On her " list " of various diagnoses Lyme encephalopathy is

one. I do not think that the Lyme meningitis and Lyme encephalopathy are

two different things. Did you " ask " Dr. J if things had changed? My

guess is he just used a different term to say there is still

inflammation of the brain and brain involvement. From what I can gather

it depends where the swelling is on which one you use. He has used many

terms over the years for my daughter, esp. when he is writing letters

for the school or other things trying to impress that this is serious.

The thing with Lyme is that the brain involvement can be reversible with

treatment, so do not get overly worked up right now with the dx. I am

always more concerned with the treatments and that he is hitting

everything that needs hitting.

My daughter has been on cipro and zithro in the past long term. She has

been on zithro for years, and stopped cipro when we thought the bart was

gone, but just added it back as we think maybe it is still there to a

lesser degree. My daughter does not herx alot and has had few problems

with the many combinations he has added. I always try to not overanalyze

what is going on, and try to trust him and go with it. There is enough

to worry about if a herx or side effect happens, but then Dr. J is there

to help us through and usually it is not an issue.

If you have questions for Dr. J about exactly what he means when he says

encephalopathy, write it down and ask him next time. Or call and ask if

you can't wait. I tape ALL our appts and then transcribe them after. It

is time consuming but I get tons more out of the appts, and can go back

years and gather information he had explained before that I had

forgotten or missed. Then when I ask him what he means by something, he

explains it and I have it on tape. Sometimes I am confused by something

he says, and when I ask for him to explain it, he does so and so

eloquently that I am always glad I asked.

Your son is in the right hands, Tiffanie, and I believe he will do well.

Zithro is a real wide spectrum antibiotic that hits many things so he is

on a good one there, and cipro really helped the bart last time and we

hope does again. Good luck. I hope he doesn't have any huge problems

that you can not deal with. If he does, call Dr. J. They are great with

that. And there is nothing like the support of others who have been

there, like this group.

Thinking of you,

Hugs,

Z

On 8/1/2010 10:50 PM, Tiffanie wrote:

>

> We went to Dr. J. this past wednesday, was diagnosed with

> Bartonella and and now the lyme meningitis turned into encephalopathy.

> we were told he has alot of problems from ths Lyme disease. He had 18

> vials drawn yesterday, they're testing for so many different things,

> co infections, lupus, mono, I dont even know what else...anyway he was

> put on cipro and azithromycin for a minimum of 9 months. Also tindamax

> he has to take every week for 2 consecutive days. he started the other

> 2 abx. tonight but since he has summer school I dont know whether to

> wait till next weekend so I can monitor him or start him now. They say

> there can be severe reactions with that including seizures, paralysis,

> bell's palsy, STROKE, etc. But these reactions can come from the

> disease too. What do I do ?? What is encephalopathy ??

>

August 2, 2010

Thank you, thats what I really need is support and your experiences with this.

It was 's 1st time seeing him so I brought all his blood work and the

spinal tap report confirming the meningitis. I told him about the brain MRI, the

one without contrast was ok but as soon as they gave him the gadolinium he was

like the Exorcist within a minute. They say less than 1% have a reaction, well

he fell into that category, so we weren't able to " light him up " and see what

was needed to see.