Lyme Disease Support Group

I'm new here and I'm hoping for some input for our teenage daughter who has struggled for about 10 years.

She was finally diagnosed with Lymes and recently Igenex confirmed Bartonella. Mercury is also a strong suspect. Most of her symtoms have focused on the neurological and gut.

She has developed OCD that is"off the charts" which has only increased with each type of treatment we tried for the Lymes. Because of her sensitivities and the uncertainty of the cause, we moved with caution, until we got the Barts confirmation.

Now that we know what is causing her severe neurological symptoms ( and others) we want to move ahead with something that will touch the ocd- but I hear that stirring up the mercury can be a real problem...but we need to do something quickly. She is exhausted, and can't heal well if she can't get sleep.(due to the routines)

We are in a state that only recently recognized Lymes - doctors have lost their licenses here, so finding someone who will not only will come to the house (she has been house/room bound for some time) and knows Lymes has been a challenge. The MDs we have are trying, but they just don't have the experience.

We haven't wanted to hospitalize her since they would put her in the psych ward, drug her and not treat the cause- which is the Barts/Lymes and metals.

Any one with any thoughts, recommendations, experiences would be welcome.

thanks so much!

sorry to read your daughter's painful story.

what state are you in? also how old is she??

what are her specific OCDs?

i'll send you a private message, left side, of my welcome letter with links/info galore.

in my welcome letter is a link for LLMD REQUEST FORUM, please click on it and read the intructions in cmany's post; i have specific instructions so i get everything i need the 1st time since i'm swamped ok.

then others from YOUR state may see your post, and also pm you with any info they have with up to date info that i don't always get since i'm in iowa ok

bettyg, iowa leader

Post edited by: Bettyg, at: 02/22/2011 09:46 PM

Hello! I just wanted to say how sorry I m to hear of ur daughters struggle. My

Thoughts & prayers r with u all. Good luck & I'm hoping u find the help u need

I wish I had an easy answer for you. There are a lot of naturals to try, but as in my case and some others, you have to be careful not to over tax the kidneys. This is causing me to have to come down on some naturals now.

I ended up in a psych ward years back, and was diagnosed with severe anxiety and bipolar disorder. But no one ever took into account the Lyme and coinfections. And the psych drugs did not address the cause, like you say. In fact, they only seemed to shift the symptoms in an unbearable way.

Then I was diagnosed for being even crazier for having the weird side affects.

You might want to research some of the naturals that have been used by people on this forum.

Anyway, my heart goes out to you. And I will pray for you and your daughter that she find healing!!

I'm going on record here and telling you that your daughter WILL get better ~

I have been dealing with much of the same ~ and I have improved, but I'm not "there" yet, and I will not stop until I am 100% ...

You've got a lot of good people fighting alongside of you ~ it is daunting at times, I know ... but it must be taken methodically ...

Looking at your ID ~ are you in Connecticut ???

I'm going to PM you some ideas and names I have ...

With everything I have learned, I feel that if mercury has already been acknowledged as a problem with your daughter, then it ( mercury ) must be addressed first ...

Mercury is a dreadful toxin that attacks the nerves ~ as are the toxins released by lyme, esp when lyme is attacked or dying ...

So if your daughter already has neurological problems, killing off lyme right now would NOT be advised ...

The lyme toxins on top of the already entrenched mercury would be a disaster IMHO ...

If she were to start w/ detoxing and SAFELY and SLOWING removing the mercury, the lyme toxins would go with it ...

Then you could address the remaining live bacteria ...

Please keep us posted ...

One thing that I think causes some of my OCD behavior (like checking my front door lock about 5 times before i go to bed) is that my memory and brain fog are so bad sometimes that I simply CAN"T REMEMBER whether I did something or not. It is really frustrating. So if your daughter is going through that, I really can empathize. It certainly does make one feel as though they are going crazy!

But the good news is, once they get a hold on the Bartonella, I've heard that the neuro symptoms will get much better. That's what my LLMD has told me!

So hang in there!

-Sandie

One other thing I noticed is that I have had a constant ringing and kind of pressure in my head for a while now. And I noticed that along with that, is when my OCD got worse. I can tell it is connected with this inflamation and ringing feeling in my head.

Does your daughter have ringing?

Post edited by: VicMac, at: 02/23/2011 08:14 PM

A major pressure in my head and ringing in my ears.

All my Bartonella symptoms have intensified exponentially since going on Rifampin recently including this "head pressure" thing as well as having my night sweats come back with a vengeance.

I wake up and my night shirt is drenched! (I had night sweats for 6 weeks when i first got sick last year then it went away)

I've also noticed sinus issues get worse which i've NEVER had problems with sinuses in my life. Just really weird symptoms!

Post edited by: sandiegolymer, at: 02/24/2011 02:40 PM