Children with LYme....and does it cause OCD??????

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Martha's Vineyard
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Date Joined Jul 2008
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   Posted 6/3/2009 9:46 AM (GMT -7)   
Is anyone suffering from OCD along with all of their other symtoms? It keep coming up from the Dr.s and my 13 year old.
And what about cutting oneself? I have read of others on the forum who are hurting themselfs....
We too have that problem in our family.
What the hell.........??????
2004 in Martha's Vineyard me and my two daughters then 11 mos and 6 all got Lyme Disease. This was only known to us because we found the tiny ticks on us and we got very ill. My dog also got lyme and he went lame.
We have fought it for 4 years to no avail.
We all got it again this summer is Texas.
I am now in treatment in Scottsdale Arizona at Envita.

"The eyes cannot see for for what the mind does not know."


scorpio1960
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Date Joined Jan 2009
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   Posted 6/3/2009 10:08 AM (GMT -7)   
Marie, I am so sorry your daughter is having more problems. I've been told that OCD can be caused by Lyme Disease. about the cutting, "what the hell" is exactly how I feel too. Two of my friends have told me they found out their daughters were doing this. For some strange reason this has become somewhat common among teenage girls. I just don't get it but hope you find some answers. At least you're thinking clearly now and in a position to deal with it all. I feel for you and wish you and your precious daughters all the best. Valerie

Dowa
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Date Joined Sep 2008
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   Posted 6/3/2009 10:25 AM (GMT -7)   
Hi Marie: I recently saw a documentary about self mutilation and they say it is normally done when the people doing it are unable to express emotions (normally fear of something). Your daughter was possibly afraid for you when you were so ill and did not have an outlet for her feelings. The treatment was "talk" therapy. Good luck- D

RottenDog
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Date Joined Apr 2009
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   Posted 6/3/2009 12:13 PM (GMT -7)   
3 yrs ago i was working in a juvy center. many of the kids there did this, its sad to see the scars on them. and a friend of mine i worked with also did this, she told me it was her way of letting out her anger,this is what she told me " like if i bleed i know i'm alive and i'm not hurting anyone else " at the center we tryed to get them to redirect there fears and anger on other things other then there bodies. like given them a punching bag. and as Dowa said make sure there is someone there your daughter can talk to who she truests this is the most inporant thing. and on your part you may have to go through the hole house and remove anything that can be used to hurt her self. and you would be suprised and what can be used. even pens if they are the kind that screw apart to replace the ink. paper clips, seen this many times b4. when working there i combined my 2 jobs the kids and the dogs from the shelter. after ther had super we would load em up and take em to walk the dogs. explaning to them some of them was either abandon or aboused. they needed love and kindness. this showed the kids they was able to love without fear. also dogs cant talk to tell what the kids say to em, they felt safe talking to them.

i pray your daughter is on the road to recovery soon.
   RD
                                                                                                                 
 
still looking for answers
 


Pomfrey
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Date Joined Nov 2007
Total Posts : 23
   Posted 6/3/2009 1:29 PM (GMT -7)   
My daughter was diagnosed with OCD when she was 4 years old.  I realize now that it was probably Lyme that caused it.  It took a lot of talking about how things would go in regard to whatever it was that she was obsessing on.  Since she started her Lyme treatment about 2 1/2 weeks ago it has gotten worse.  She has a number of tics and repetitive things that she has to do or she gets freaked out.  Germs are particularly hard for her, and yesterday her stepsister (who lives with us) was diagnosed with a staph infection on her leg.  That has made for some stressful moments, we are trying to keep them as apart as possible.  So far, no major meltodwns.  We try hard as a family not to make too big of a deal out of it, it seems to get worse when her stress level is up or she gets very emotional - PMS week is particularly hard, too.  She can't help it, though, it's not like she wants to feel this way.  I am hoping that after she gets through this bout of herxing that she will get back to a more normal state. 
 
My son, also Lyme positive, was a severe cutter for a few years.  (He has managed to stop in the last year).  It is terrifying, the first time I saw him cut I nearly passed out.   He cut arms, legs, stomach, back.  He cut lines, pictures, words, you name it.  There are studies that show that when they cut themselves the serotonin in their brains increases by up to 600%.  One of the diagnostic tests we had done on my son about a year ago was a seronin level test and his was 40ng/ml.  Normal range is 101-283.  No wonder he was cutting, he could have taken SSRI's until the cows came home but it wouldn't have helped since he wasn't manufacturing enough of it.  It also explains why they feel better or more normal afterwards.  Cutting is a coping mechanism that they learned to deal with they way they feel.  If you can remember that, it might help you stay calm about it.  Maybe you guys can brainstorm some other coping mechanisms together.  Supposedly holding an ice cube until it hurts can do the same thing as far as brain chemicals go, snapping a rubberband on your wrist can, too.  Sometimes they can't think of anything else to do and they just do what they have learned works. 
 
Good luck, I hope you guys can find some peace.
 
 

KSA0403
New Member


Date Joined Jul 2008
Total Posts : 2
   Posted 6/3/2009 2:36 PM (GMT -7)   
Definitely! My 13 yo has had extreme OCD, anxiety and mood swings. But - it is going away with treatment. It will get worse at the beginning of treatment, but it will get better. We are 16 months into treatment - after being sick for probably 10 years. Cymbalta and Questran (not at the same time) heave helped my daughter a lot.

Hang in there!

Post Edited (KSA0403) : 6/3/2009 3:45:12 PM (GMT-6)


Martha's Vineyard
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Date Joined Jul 2008
Total Posts : 1119
   Posted 6/3/2009 3:15 PM (GMT -7)   
Wow......
Misery loves company. I whole heartedly agree with all of the comments above.
She attempted suicide twice while I was in Az. And she cannot get past it now. She asked for help.
She washes her hands over and over. And has routines that drive her crazy. Sort of going into corners of the room..and counting and humming.
Her insomnia is so bad...going on 6 years now.
Her moods swings are frightening. And her violent outburst.
She has dumped all of her friends. Does not trust anyone anymore.
She felt abandened by me while I left to the clinic.
I got home to hell.
One is only as well as their sickest child.
Her father checked her into the columbia pschisctric intitiute in NYC. I am now having to move up with my little lilly to a hotel in NY.
Luckily I am able to coop with all of this now.
I am clear headed and honestly.....pissed off.
The best thing is that her father...finally is at the end of his rope. And he spoke to Dr. Korn at the envita clinic and he is now...hoping that she does have lyme and bart...because he has seen from me...that I was healed from this at the clinic.
But in the mean time. We cannot even trust her in her own room. She wanted to jump out of her windwo...hang herself in her closest...and told me that if I only knew what she wanted to do......
I told her....I understand more than she thinks...but cannot share what "my plans were"
I must say that I am very impressed with the help and long talks with the Dr.s at Columbia and they have a specialist who deals only with the nurological aspects and kids with lyme. That was a shock to me.
I was also very pleased that the Dr.s were very interested in my treatment that was alterntive..because for the only reason...that it worked for me.
It is nice not to be having to fight with anyone about it.
But...as they have said...they are limited as to their treatment. Yet we are not on our own.
Why Ozone is not covered by insurance in order to help these children, it is cheap compared to the other long and non working treatments available.
I am doing what I can to change this.
Her father is a very powerful man...and I hope to bring the light to this problem by showing him the results asap.
I am so saddened by all of the stories and for your children.
If for not only for my child...I am going to carry the torch for all the kids and raise as much hell as I can...
We did finally send her blood work off to Fry labs in Az to see what else he can find...besides the lyme. Since the CDC and Lab cor and Quest..does not seem to think that anything is wrong with her. What does it take for them to update and revise there primitive test? how many dead children must they have at their feet.
It is no wonder that suicide is off the charts in teens in the North East. She was covered in ticks in the vineyard. I lost count how many of the things were on her. Like....covered.
No telling how many bacteria she has in her system.
2004 in Martha's Vineyard me and my two daughters then 11 mos and 6 all got Lyme Disease. This was only known to us because we found the tiny ticks on us and we got very ill. My dog also got lyme and he went lame.
We have fought it for 4 years to no avail.
We all got it again this summer is Texas.
I am now in treatment in Scottsdale Arizona at Envita.

"The eyes cannot see for for what the mind does not know."


Dowa
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Date Joined Sep 2008
Total Posts : 1120
   Posted 6/3/2009 3:44 PM (GMT -7)   
Marie: Where you had such success there, why not bring your daughter to Envita rather than NYC? D

Martha's Vineyard
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Date Joined Jul 2008
Total Posts : 1119
   Posted 6/3/2009 3:56 PM (GMT -7)   
Her father did not believe me for the last 8 mos that she had the same problems as me. He actually yelled at me and said that she was only saying that she had all of my symptoms.
It has been more than frusterating fighting with him and fighting to get my daughter treated.
Which of course I tried to get her out there while I was living out there the whole darn time.
But his Dr....my old internest...you know the one that said I was fine....and no lyme.
He would only listen to him this whole time. He of course took her to the best Pediatirc infectous disease Dr. in the state of Florida and of course they sent her blood to Lab cor. and it came back negative.
So...he has had to go down the long stupid road that I went down...to have to prove that she has in fact these diseases.
He knew that I was out of my mind and was also going to be put into a institition. So I guess I was not the best person that he wanted to listen to about his very sick daughter. Our very sick daughter. He was scared to have these alternative treatments done to her. He is a very strong believer of the New England Journal of medicine.
But she already did all the regualr offered treatments of drugging a kid our of their mind....with tons of pills...and on that she overdosed on her fathers pills....
So................................her I am...trying not to totally...lose it..
Well actually I have. I have never cried so hard. And I did threaten his life...lol
So.....
So I will do what I have to do to get her the treatment. All I can say...it that is has gotten ugly. And this is a battle for sure.
Hopefully I will have her at enivta this summer. Geee...how lovely is AZ in July and August.
God I hate him.....
Nothing like 120 heat to help and heal.
2004 in Martha's Vineyard me and my two daughters then 11 mos and 6 all got Lyme Disease. This was only known to us because we found the tiny ticks on us and we got very ill. My dog also got lyme and he went lame.
We have fought it for 4 years to no avail.
We all got it again this summer is Texas.
I am now in treatment in Scottsdale Arizona at Envita.

"The eyes cannot see for for what the mind does not know."


scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 6/3/2009 3:58 PM (GMT -7)   
Oh Marie, I am so sorry and hope Dr. Fallon at Columbia manages to help her get well. Thank goodness your ex is finally starting to see the light and agreed to consult a doctor/institution that believes in Lyme Disease. My heart goes out to both of you.

Martha's Vineyard
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Date Joined Jul 2008
Total Posts : 1119
   Posted 6/3/2009 4:00 PM (GMT -7)   
He is a stubborn old, rich, fart.
He did not mind sending me off to AZ. for alternative treatment. I am his X....but his baby girl....hmmmm
different story.
He was going to take her to see Shapiro in NY...need I say more..
Whom next Alan Steer? Or whatever his name is..
I mean this is what I am up against...
It might as well be the senate and the USDA and the CDC.
Oh.....and the FDA
2004 in Martha's Vineyard me and my two daughters then 11 mos and 6 all got Lyme Disease. This was only known to us because we found the tiny ticks on us and we got very ill. My dog also got lyme and he went lame.
We have fought it for 4 years to no avail.
We all got it again this summer is Texas.
I am now in treatment in Scottsdale Arizona at Envita.

"The eyes cannot see for for what the mind does not know."


Martha's Vineyard
Veteran Member


Date Joined Jul 2008
Total Posts : 1119
   Posted 6/3/2009 4:01 PM (GMT -7)   
His name is DR. Fallon?
Cool....I am meeting with him next week.
Gosh...I am working on my new book...
LYME HELL
2004 in Martha's Vineyard me and my two daughters then 11 mos and 6 all got Lyme Disease. This was only known to us because we found the tiny ticks on us and we got very ill. My dog also got lyme and he went lame.
We have fought it for 4 years to no avail.
We all got it again this summer is Texas.
I am now in treatment in Scottsdale Arizona at Envita.

"The eyes cannot see for for what the mind does not know."


Martha's Vineyard
Veteran Member


Date Joined Jul 2008
Total Posts : 1119
   Posted 6/3/2009 4:04 PM (GMT -7)   
I guess I am going to be living in a hotel again this year.
How are you feeling scorpian?
Long time no speak. Almost called you today...
But too worked up right now.
How is Fry working for you now?
We sent her blood work to him.
No telling what she has.
Poor thing. She dropped out of school......I have had enough of this...really.
2004 in Martha's Vineyard me and my two daughters then 11 mos and 6 all got Lyme Disease. This was only known to us because we found the tiny ticks on us and we got very ill. My dog also got lyme and he went lame.
We have fought it for 4 years to no avail.
We all got it again this summer is Texas.
I am now in treatment in Scottsdale Arizona at Envita.

"The eyes cannot see for for what the mind does not know."


scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 6/3/2009 4:14 PM (GMT -7)   
Hey Marie, I'd be worked up too if I was dealing with what you are.

Maybe if I'm feeling well enough when you come to New York we can try to get together. I'm being treated by Dr. R in New York (not Fry) but haven't made much progress yet. I think he's a fantastic doctor with a great track record but I've been so sick for so long I guess it will take some time to get there.

Hang in there and try to take comfort that your daughter will finally be getting the treatment she needs.

Valerie

P.S. I assumed you're seeing Dr. Fallon because he heads the Lyme Department at Columbia. I just received an e-mail from Columbia a few days ago so I must have signed up for their mailing list and don't remember. lol Anyway, here's Columbia's website: http://www.columbia-lyme.org/

scorpio1960
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Date Joined Jan 2009
Total Posts : 914
   Posted 6/3/2009 4:34 PM (GMT -7)   
Hey Marie, I forgot to add that I'm so glad her doctors are willing to listen to you. Maybe you can teach those doctors at Columbia a thing or two while you're there. Have a safe trip and good luck.

Razzle
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Date Joined Aug 2007
Total Posts : 4399
   Posted 6/3/2009 8:13 PM (GMT -7)   
Lyme can do anything...in my very humble opinion...
-Razzle
Chronic Lyme Disease, Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, Pancytopenia, chronic malabsorption/malnutrition, etc.; G-Tube; Currently TPN-dependent.
Meds:  Zofran, Pulmicort, Heparin (to flush PICC line), Claritin, Colloidal Silver (used topically), IV Milk Thistle, probiotics.


Martha's Vineyard
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Date Joined Jul 2008
Total Posts : 1119
   Posted 6/3/2009 9:25 PM (GMT -7)   
Oh sorry veronica...was getting my scopion's confused...lol
Can you get Ozone and perioxide in NYC? The only reason that they have been interested in what I keep going on and on about...lol..till I am green in the face. Is because I am not suggesting that she take huge amounts of abx. which we all know..it just not allowed..lol
But they are curious what my treatment is all about. And not familiar with it I guess. But I will be meeting with all of them next week. With a big smile on my face...and ready to drag her out of there and take her to envita.
I don't think therapy is going to rid her of the harmful bacteria that she is harvesting.
so...I will try to be nice....and funny...and most importantly I am someone who was very ill and have all of the Dr.s, big names....who could not cure me.
And envita did. So the fact that I can fly up there to NYC with a small child and even be able to walk into a mental ward with out needed an EKG....and a wheel chair...lol...I am better and they should listen to me.
I may stop over and see Shapiro and Steer while I am there. Since I can get in to see them. Easily.
And have a nice chat with them about my happy story.
I am out to try to make some changes. And if I have to go to the top...and smile....etc...I am.
I can get into these Dr.s no problem. I think that they deserve to know that something worked. I think that they will listen. Well they will have to listen. I will sit on their chest and make them...lol..:>)
2004 in Martha's Vineyard me and my two daughters then 11 mos and 6 all got Lyme Disease. This was only known to us because we found the tiny ticks on us and we got very ill. My dog also got lyme and he went lame.
We have fought it for 4 years to no avail.
We all got it again this summer is Texas.
I am now in treatment in Scottsdale Arizona at Envita.

"The eyes cannot see for for what the mind does not know."


veromia333
Veteran Member


Date Joined Mar 2009
Total Posts : 674
   Posted 6/3/2009 10:14 PM (GMT -7)   
Yes I believe she is doing this because of the unexpressed emotions also. She needs treatment. And they wonder why people snap and kill there spouses or exes. I mean that hypothetically not endorsing it. Just the frustration that person can cause is that powerful. God needs to get through to him if he doesnt even listen to his own daughters words. To bad people like him dont get bit. I wish all people like him did get bit. I dont care if that is evil to say.
The line is faded not showing where Lyme came in. I became a new Mommy n my Lyme decided to show itself. Swollen elephant like knee and finger and limiting back pain. Bell's palsey, weight loss as if I had no muscle on my bones anymore. And much more text book lyme symptoms. To a Lyme doc, after alot of there is nothing wrong with you and a recommend to counceling,he said V this is Lyme. What kept me pressing on I had Lyme while I was pregnant. I know I was not infected while pregnant. I am watching her with an eagle eye. God Bless everyone. Love Veronica. Were the ones who know about Lyme not the doctors. Isnt that just mad? Backwards. Alice in wonderland.


RottenDog
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Date Joined Apr 2009
Total Posts : 1013
   Posted 6/3/2009 10:19 PM (GMT -7)   
veromia333, its not evil at all, i think it each time i hear someone else saying there Dr. says there is no lyme here.i wouldnt wish it on anyone,but if someone has to have it then it should be the mean Dr. who make us suffer more by denining us treatment and dignade
   RD
                                                                                                                 
 
still looking for answers
 


Dagger
Veteran Member


Date Joined Apr 2008
Total Posts : 1522
   Posted 6/3/2009 10:57 PM (GMT -7)   
When my Lyme symptoms were at their worst, I had some pretty strong OCD symptoms. Treatment with abx got rid of many of my Lyme and OCD symptoms. The circular thoughts and paper hoarding were the last to go.

Turquoise Sky
Regular Member


Date Joined Apr 2009
Total Posts : 250
   Posted 6/4/2009 6:37 AM (GMT -7)   
That had to be awful, finally feeling better and coming home to this! With all you have been through to get to where you are, and to have to watch you daughter continue to suffer. It sounds like she is also trying to take it out on not only herself, but you. Well, it sounds like your ex is at least willing to listen finally and she can get treatment and relief!

Go get those Docs!

Debbie Downer
Regular Member


Date Joined May 2009
Total Posts : 62
   Posted 6/4/2009 7:53 AM (GMT -7)   
My son has OCD too. We do not know if he has lyme disease yet. It had never occured to me until a few days ago to test him for it. He has sensory issues, OCD, repetitive behavior, myoclonic seizures, etc. He is taking keppra for the seizures, but is still having abnormal EEGs. Does your daughter see a therapist. Cutting is scary.

scorpio1960
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Date Joined Jan 2009
Total Posts : 914
   Posted 6/4/2009 8:22 AM (GMT -7)   
I haven't looked into the ozone and peroxide therapy yet. I don't think it's too popular here in NY but I could be wrong. Right now I'm doing the typical antibiotic protocol with many supplements and plan on adding either Zhang or Cowden within the next week or two. After that I will decide what to do next. I really wanted to go to Envita but there was just no way I could afford it. Maybe when and if I can I sell my apartment, I'll go there.

I'll keep your duaghter in my prayers. It's tough enough being a teenager without Lyme wreaking havoc on top of it. She's very lucky to have you.

Martha's Vineyard
Veteran Member


Date Joined Jul 2008
Total Posts : 1119
   Posted 6/4/2009 8:42 AM (GMT -7)   
It is true that the DR.s who have the empthay and the true understanding and drive are the Dr.s who have gotten this disease themselfves.
My daughter thought that I was going to die. And then her father took over her life and did not want her to come back to me when I got back.
He just took her. She has been miserable and at least now we have the top people getting in the middle of this zoo and lawyers too.
He has looked at this as an opprtunity to take her away from me more than anything else. No wonder she is beyond upset. It is going to stop soon.
All this from a man who left me while I was pregant with her. But....
I think this is all such a mess. And so sad. I am better off...mad.
But I feel weak. I just cannot believe that each morning I am waking up.....fine. No pain...no headahe...no fever.....I cannot believe that I am getting through this now. Thank god..and envita that I am well.....well for this battle.
They say god never gives us more than we can handle.
So I know that I am not alone. :>)

The OCD with the kids is odd. The cutting.....scary. I guess this is the only thing that I did not have.
There is a new show on A@E at 10 pm...eastern.....called Obessed, and the things that these people go through with their ODC.
I was very interested to learn...learn their thoughts. I was also amazed that the thing that helped them was to face their fears....and when they did they would become ill......but after facing their fears over and over again..with the ehlp of a therapist. Their brians realized that the fear was not to be feared. And then......the fears who stop.
I am my daughters fear, her whole life with me is her fear. Our neighborhood, my home....me and her sister. All the things that she thought she had lost.
She would freak out having to come home to see me and her old room. And he dad used this time to critize me on my parenting....and what I was doing wrong.
It has been hard. But at least now we understand...or at least I do..and I am sure the Dr.s at columbia do and I now have some Dr.s on my side...hopefully.
2004 in Martha's Vineyard me and my two daughters then 11 mos and 6 all got Lyme Disease. This was only known to us because we found the tiny ticks on us and we got very ill. My dog also got lyme and he went lame.
We have fought it for 4 years to no avail.
We all got it again this summer is Texas.
I am now in treatment in Scottsdale Arizona at Envita.

"The eyes cannot see for for what the mind does not know."


Martha's Vineyard
Veteran Member


Date Joined Jul 2008
Total Posts : 1119
   Posted 6/4/2009 8:44 AM (GMT -7)   
I think it sucks that you all are not able to get the Ozone therapy that you need to get well. And that it is not legal in most states.
I wonder if they do Ozone in Mexico?
Bet they do.
2004 in Martha's Vineyard me and my two daughters then 11 mos and 6 all got Lyme Disease. This was only known to us because we found the tiny ticks on us and we got very ill. My dog also got lyme and he went lame.
We have fought it for 4 years to no avail.
We all got it again this summer is Texas.
I am now in treatment in Scottsdale Arizona at Envita.

"The eyes cannot see for for what the mind does not know."

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