Topic: need to hear some success stories about psych/behavior symptoms in children!
tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
Hi all,
My three young children are very slowly getting better under Dr. J after a year of treatment but one of my boys I'm worried about right now because we have not seen any improvement in his psych/behavior issues. He seems to be getting worse in that area.
The slightest thing sets him off and he talks back and says things that you would never imagine a 5 year old would say. He has no respect for authority. He tells me he's going to spit on me or that I'm going to die or that he doesn't like me.
He tells me to go to my room when I tell him to do so. He says, "I can do what I want." He also blames me or whoever is nearby if he spills something or if something goes wrong. "You shouldn't have done that!" He also now often just refuses to do things so that I have to physically remove him or take him to his room.
I am often at my wits end with him. He acts like a complete BRAT. I know it is lyme but it is still very difficult to hear these things and deal with him. I find myself yelling a lot. It seems to be the only thing that works with him (or the threat of a spank on his bottom). I can't believe a 5 year old can make me so angry.
The only thing that gives me hope right now is that most of his physical symptoms have gone away. He still has headaches sometimes but doesn't complain of pain much. Instead, he just acts like a complete terror. Don't get me wrong, he can be sweet sometimes, but every day is still very hard with him due to the bad behavior.
The thing that sets me off the most is when he is violent with his siblings. The other day he poked a stick in his brothers face and just barely missed it. He can play nicely for a short time, but it always ends up with a fight. I often have to put him in a separate room to play by himself.
Also his OCD symptoms started about 4 months ago and haven't improved. He claps a lot and will only wear certain clothes and is currently afraid of spiderwebs.
I would appreciate any info on how long it took your children to improve in these areas. My son has been on rifampin for 3 months and biaxin for almost 2, so I was hoping for more of a change by now. He was on bactrim/omnicef for 8 months before that.
Thanks so much,
tickbattler (I had to re-register recently as tick battler since my pm box didn't work.)
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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I have treated my son for over a yr now and just with in the last few months of Bartonella treatment have I noticed improvement in behavior or patience.
Hope that helps, Stacy
Posts: 476 | From Columbus, Ohio | Registered: Aug 2007
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posted
I know some people that were like that and it did finally resolve after looking into co-infections and treating them.
But, I also know tons and tons of kids including myself that acted like that and a spanking usually sets them in their place. A lot of people are quick to blame everything on lyme. But I don't know because I never seen your kid before... only you can tell.
Posts: 458 | From Miss | Registered: Mar 2009
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I'm still waiting for my daughter's OCD symptoms to go away after a year and a half of treatment.
My other daughter, who does not have Lyme, used to be defiant and violent like your son until we put her on the gluten free diet. If he isn't already gluten free, it might be worth a trial to see if it helps.
Posts: 984 | From US | Registered: Dec 2007
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I just wanted to tell you that you aren't alone. You KNOW when the behavior is coming from the Bart, just like I know. And people just don't understand it until they live it.
Finn used to sleep on all of his Thomas trains every night. He dreams about ants in his bed. We have seen the OCD decrease with homeopathic treatment, but that seemed to make the violence worse, on and off. Still working on that stuff here, too.
And the now 13 year old is a sarcastic beast. Can't stand the way he talks to me. Rathe than punishing them, I "try" to remember to remind them that it is the Lyme rearing it's ugly head (or the Bart). It actually helps us all put it in perspective and remember that it won't be this way forever. We are the lucky families that caught the bacteria and won't be lumped in with the "mental health with no cure" families.
Hang in there. . .I'll be thinking of you.
Posts: 564 | From Tick Hell | Registered: Oct 2008
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lymewreck36
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O.K. Well, here's my perspective.
Three children with chronic lyme for 7 years....
My oldest just graduated from high school. Middle daughter just turned 16, and youngest is 10 1/2.
All three are completely different people, from birth. That always amazes me.
My oldest did not have lyme when she was less than 10 years old, but I had some tough early years with her because she was so head strong. I used to say I couldn't believe a 3 or 4 year old could make me so angry that I wanted to dump her in the dumpster!!!!
But then when she hit 5, and it is different for every kid, she calmed and it has been pleasure ever since.
My middle daughter was born with lyme disease, I suspect, and then was bitten and infected without a doctor diagnosing her when we was 8.
She has been my most challenging child, not respecting authority, talking back when even the stupidest child would know it means severe consequences...I have never known the rage I feel at times when parenting her, except when parenting her. One or twice I have lost all control and still beat myself up for that.
I mean, she has a good heart, but she will do things like lie to us all the time, I mean, we discoverd she was smoking and she denies it, stuff like that.
But.....when we started lyme treatment and babesia in 2004, a lot of her personality stuff started to get better....she was plagued by nightmares and anxiety that were tortuous, but that finally after several years of treatment went away...
She still is learning about authority....and I have to say, if we as parents had not kept her under our thumbs and never given up... she would be a lost child.
AS it is, she is learning, and maturity is coming slowly....
Hopefully she will bring home good grades this year. She went with us when touring the college for my oldest and it hit her like a ton of bricks....reality.
I think the most important thing for you is to lean on other parents for support....and never, absolutely never...give up on the kid.
I have many times thought about congitive behavioral therapy for her...and if the grades don't come home good in the fall, that is what she is getting.
WE have grounded her when all her friends are going to important parties...but it is important to always, no matter how severe the punishment, balance it with love.
So I will take her out to dinner for our "buddy dates" and just make myself listen while she talks. I think this does more to curve her behavior than the punishment. She can't believe I take that time for her when she was bad.
Remember that you are human, you know your child better than anyone, and try not to beat yourself up. Hang in there and NEVER give up on the kid. It will pay off way down the road, and you will not have any regrets with your life in the end.
My fourth daughter I always say is my payback for the difficulties parenting my second daughter, and the lyme death of my third daughter...stillborn.
My fourth daughter, now 10 1/2, has been on auto pilot since she was born. Does what she is supposed to, constantly praised at school, and like a lap dog soaking up the love.
She has lyme too. But she was not born with it I believe. She missed that bullet.
I hope that helps. You just have to keep keeping on.
Mary
Posts: 1034 | From North Carolina | Registered: Aug 2003
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lymeparfait
Unregistered
posted
Hang in there parents...there is hope for your child's psych symptoms.
I am in the same boat, and it has been a "wild ride", but now feel we are turning the corner in a positive direction.
After treatment for lyme and co's, (they are now in remission), we have begun focusing on the psych/behavior things along with detox.
Our teenager is similar to Lymewreck's daughter. Lying for no reason, nightmares, anxiety , depression, impulsive, poor decisions, and guilt.
We decided to try two combined approaches, based on the doors that seemed to open for us.
Emotional Freedom and Detox
A Natural Doctor, muscle tested her, and was able to isolate deep emotional problems that I was not aware of, and treated her initially with bach flower remedies. These worked very well, and enabled her to share her feelings freely...this was a unique experience for both of us , and a novel approach. We were both so suprised by the positive outcome, meaning she was finally open to talk to us for the first time in many years, and finally started to recognize her problems and verbalize her wanting help. This was key for a teen, she needed to want to be helped first.
Then went to a healing service at a church...and started more emotional healing. For us both! She went along with an invitatin we received...and we were blown away with what happened for each of us individually there.
Then started the Allergie Immune Therapy where more emotions were released naturally...things deep in the DNA. Inherited as well as environmental or pathogenic in nature. I highly recommend this for the kids!!!!!! WE are still on this, and it could last a year. She is responding fantastic to the treatments. I also have a neighbor who started her son on this after seeing my daughters postive changes. This boy is having similar positive outcomes with each round of the therapy drops.
Each step so far has been releasing layers of problems, and she is feeling free.
The latest thing is seeing a lyme psychiatrist, Dr. B. She had a tramatic experience on top of lyme and all, and needed some counceling and help coping. He recommends sleep aids temporarily, to allow her mind and body to heal, and has seen major results in his lyme patients.
Currently on Topomax. She has slept each night very deeply. NO nightmares or replaying the bad event, where previously she has had nightly for years. Wakes refreshed and no anxiety or depression. Remarkable difference in personality. She feels better and responds to us better.
She has become motivated to do the right things, and I observe dramatic improvements.
She actually proactiavely has conversations with me now...very good ones. This is totally amazing to me.
So I recommend working at the spiritual level, which give emotional freedom, and sleep issues so all the physical and mental healing can begin.
This is a key component that is lacking in many of our treatments for lyme.
Also, detox is the key...as the die off as well as candida creates more mental problems. Especially with very young children, do not forget to give them binders before bed to remove the die off, and work on removing metal. Cholestramyne, chorella, apple pectin, epsom salt baths, exercise, far infrared sauna, and many other things help clear the body and mind.
Many that work on this with their kids are seeing dramatic results.
Children have a great chance to heal more quickly than adults as their body is young, and immune system is still strong.
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lymemomtooo
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Battler, I will say to you what I have said to many...Try everything to get the child well before they turn 18...With a psychiatric Lyme issue, they can stop all meds and refuse to go to Drs..
Our family has fought this Hell for many years..Gone to one of the best Lyme psych. available with little improvement. She has attempted suicide 19 times now.
She was going down hill in memory and cognitive function and her llmd was perceptive enough to suspect brain damage. The first brain spect scan confirmed her suspicions so she sent us to a clinc in Virginia for brain damaged patients.
We were there for 3 days but 2 days later, there was significant improvement. I thought we would soon have her back to normal...But that has not happened. Insulin dependent diabetes continues to be a destructive player in her life.
Then she still hates to go to drs and take most meds so I am unsure if we had better cooperation if she would be well..
She can socialize with friends and work part time but college is out of the picture. I am also sure that she has never had a killer med for Bartonella.
It was the main player in out of her mind rages for months and possibly the OCD, phobias and a bushel basket full of other neuro and psych things.
But Battler--please remember in their weakest or wildest state, they do not always know what they are saying or doing. You are the target because you are there and trying to help. My daughter would not remember most of what she ever did.
I recently was able to have a talk to her about some of the past and she said, I never did that or said that. So thank God they do not remember.
But she is still here so that is a blessing. We were able to fight thru the suicide attempts and even 2 homicidal rages.
Wish I would have had knowledge of someone like the person Parfait was able to find. But now, I think she is unwilling to try anything new. She got her hopes dashed by so many drs along the way.
I continue to pray that there is soon a cure for our children..hugs. lmt
Posts: 2360 | From SE PA | Registered: Mar 2004
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Would you recommend following these steps (detox, emotional therapy, AI) while still in treatment or when the child is in remission? (Wondering if too much release might add even more stress on the body.)
Thanks.
Posts: 648 | From northeast | Registered: Feb 2009
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lymeparfait
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posted
I would take one step at a time. It can be overwhelming if your child has many physical symptoms, so start with the physical.
You have to be ready to take this all on as well. You will also benefit from release as I have! Dealing with this disease in your child that your desperately love and want to help is overwheliming itself, besides most of us battling lyme too.
Even if our child does not choose to comply with help and treatments...you can experience the emotional healing as a mother. This will help you help them.
My remission came with this step! By helping her!
You will know when the time is to begin...but little steps are good.
When your child's lyme and co infection protocol is going smoothly, and somewhat under control, then work on more emotional things, as it may be easier for them when you are not focused on the meds and protocol....kind of when it's second nature and not new. OR if they are in remission, then it's time to begin emotional things.
Also , do not begin this when you are in a crisis...let it settle down, but a crisis may warrent intervention if it is a severe one.
There are different levels of emotional distress. You need to know how severe the distress is. Also I should say this...If your child is suicidal...then absolutely, make getting professional help your priority.
As I just read lymemomtoo's post...I understand your situation completely...my heart goes out to you and your daughter. don't give up hope...she now has to decide to want help and will herself to go that route.
WE were headed down that path...and I'm not saying it's over...it's a work in progress with her.
I guess you have to see where your particular child is at.
Also, a form of detox is needed during the lyme treatment protocol. I did not knoiw this myself, and wiched I did this. My LLMD did not suggest it until I brought it up to her.
She gave my daughter Cholestromyne...a form made by a compounder (clarks's Pharmacy in WA) with no additives in it, and it worked like a charm for her severe headaches. I now believe the headaches were not lyme, but the die off from the lyme due to her positive reaction, and quick headache resolve to the binder.
So make sure you add the acidoplylus, good probiotic...with fish oil at night. Helps neuro symptoms. This heals the brain during sleep!
(add binder, fish oil, acidoplylus to your protocol, and keep doing this even after in remission for brain healing)
I suggest working with a councelor/psychologist who understands lyme if at all possible. Even if you are involved in a church type group, someone just for your child to relate with would be good.
Many on this board have experienced new levels of healing when they have been able to release anger, resnetment and underlying fears.
If you post a new topic about this...many will respond who have great suggestions as well.
Lymenet lead me to the place I needed to be...it took time.
Please send me a PM if you want to chat.
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tick battler
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Member # 21113
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Thank you all for your posts. I'm sorry many of you are going through similar issues.
It does help to hear that there is light at the end of the tunnel.
Also, even though I know it is lyme, bart, babesia, etc., it helps to have confimration that with treatment, this behavior should go away. It's just tough not to see progress. I know I have to be patient, as the brain stuff takes longer than the physical stuff.
It's hard not to occasionally question what part of the behavior is lyme and what part is just him being a brat. My son is a very energetic and spirited boy, so with the lyme on top of it, he can be quite a challenge. I do know in my heart though that the cause is the lyme and coinfections. And the fact that many of you see the same things just confirms it.
Stacyb - thanks for giving me some hope of a turnaround down the road, even if it may take a year. I know Dr. J told me that bart treatment normally takes 6 to 12 months. I'm glad to hear you are seeing progress with your son!
Buster - Yes, I agree there are a lot of bratty kids out there, but the psych stuff from lyme and coinfections is very real.
I saw it with my other young son who was a very easygoing boy prior to getting sick. Then slowly, he started having tantrums for no reason and becoming violent with his siblings and even hit me a couple times. He would shout that he was angry and rarely smiled.
After 3 months of rifampin treatment, he was a sweet, calm boy again. He is still not healed, but the change from treatment on rifampin was quite remarkable. I just wish I could see this type of improvement with his twin brother.
jkmom- thanks for the gluten free diet idea. I may try that. I have heard of that making a difference with some kids.
lymewreck - Thanks for your long post. Wow - you have been through the ringer. It sounds like your middle daughter had symptoms much like my son. I am so glad you are making progress with her as well as your other daughters.
I can relate to the rage you felt, but of course I would never, ever give up on my son - he is very well loved. Even though he still has his OCD behaviors and brattiness, I can see that he is happy now much of the time after a year of treatment. I like your idea of "buddy dates." We try to do similar things to give some one-on-one time.
He used to have the nightmares and night terrors and whine and cry in his sleep all night long. It was terrible. When he was 2, before I figured out it was lyme, he would cry at the dinner table every night. I didn't know what was wrong and he couldn't tell me. I have to remind myself that we have come a long way since then.
lymeparfait - Thanks for the info. Glad to hear you are making progress with your daughter. I need to look more into the alternative things. I do try to give the kids exercise for detox but I know I should be doing more.
lmt - I am so sorry to hear what you are going through with your daughter! I hope you are able to get her to take some treatment soon. Don't stop trying. I wish you the best.
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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Searching for a psychiatric diagnosis is what lead us to figure out lyme. My daughter was infected at 2 and treated, but never fully resolved. She was OCD, anorexic, major sleep disturbance, in tons of pain, major sound and touch sensitivity and SUICIDAL at 3 and half.
When she said "mommy, I wish I was dead" I freaked. I started researching mental health in kids and came across something that said that a diagnosis of bipolar disorder will not be made for children with the following conditions . . . lyme disease.
Well I knew she had that, but we thought it was "treated". It took a long time to get to the right doctor, but within 10 days of starting meds, she was a DIFFERENT person and continued to resolve. When sick for 18 months every face she drew had a frown and then within 2 weeks of starting treatment every face had a smile.
She's resolved (at least for now), off meds and a pleasure to be around. THERE IS HOPE.
Posts: 524 | From Hudson Valley, NY | Registered: Jul 2007
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posted
I find it encouraging and reinforcing to read everyone's experiences with this.
I have 3 children. All born after i became ill. All born with notable issues that I could never totally figure out. Mental and physical.
I've been through some major drama with my 12 year old. She's a very good kid, but emotionally volatile at times. It was bad between 8 and 10 but then I began to control her diet more and that seemed to help. She has severe intestinal issues and headache and skin issues. Also gets dysautonomia like me.
My boys have never slept. They are twins and both have bad ADHD. It has been very pronounced since birth. I worry most for the younger twin who has terrible impulse control.
I'm hopeful that treatment might help them. I just want them to have happy healthy lives.
-------------------- Sofi Posts: 150 | From Northern California | Registered: Jun 2009
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tick battler
Frequent Contributor (1K+ posts)
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catskill- I tried to pm you but your box is full...I will post my note here...
It is so good to hear that your daughter's symptoms fully resolved. Do you mind sharing what meds worked for her and how long it took for the OCD symptoms to resolve? It sounds like she responded very quickly. How long did she need to be in treatment?
I think my son was infected around age 2 like your daughter and started treatment just after he turned 4.
Did you give any supplements besides probiotics or did you give her anything for detox?
I also wonder if I should get some behavior therapy to deal with the OCD. Did you do anything for that? I don't know much about this approach.
Thanks so much,
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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tick battler
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Sofi-
Sorry to hear that your children have these issues too. I would definitely look into lyme as a cause of your children's behavior. I have twin boys too (as if that isn't hard enough), and when they don't sleep and have ADHD...I can relate to how challenging that is.
I can tell you that insomnia was one of the first symptoms with two of my children. That has resolved with treatment. Finally, I am able to get some sleep myself, rather than bounce from room to room all night long.
Also - the ADHD diagnosis, as you may know, can be Lyme in disguise. I am sure one of my boys would be diagnosed with that if I didn't know it was lyme.
Best of luck to you.
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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posted
I have done OCD behaviour therapy with my daughter for her OCD. It is helping.
I am hoping that her OCD will go away with Lyme treatment, but if it doesn't, she will need to know how to deal with it. Even if it does, it is helping her deal with it now.
The down side is that she feels it is too much to do the OCD therapy and the therapist is questioning whether she is really sick or if it is OCD keeping her in her bed.
Posts: 984 | From US | Registered: Dec 2007
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Shosty
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For an alternative point of view, I will tell you that some years ago, our child's psych. symptoms became much worse on abx (in fact, she became psychotic) and people, including the LLMD, kept telling me that she should continue on the meds, that it was herx, or that it was the Lyme flaring on meds, that it was the toxins from die-off, etc. etc.
But after it went on for a couple of months, I asked the MD for permission to take her off. She was better psychiatrically in 2 days.
So, it is possible the meds are hurting your child. Biaxin can have some side effects that are psych., and I don't know about rifampin. An MD that I consulted at the time gave me a long list of psych. side effects from every possible antibiotic, and it was shocking.
It sounds to me like your child may be having neurological issues, possibly. Someone mentioned Topamax, and I would also recommend Lamictal. Both of these are calming for the brain. Topamax can sometimes be a little depressing for lower energy types. Lamictal really evens out moods, with more of an upper effect than Topamax. Topamax is safer (Lamictal has a rare risk of Stevens Johnson syndrome)and since low energy is not a problem in your child's case, Topamax might help a lot.
OCD is also treated with SSRI's, and yes, cognitive behavioral work can help, but it often starts with meds at the same time. There are great OCD clinics available.
Any meds for a child, especially one with possible Lyme, should start at a very low dose. Our daughter takes 15mg Topamax, and began at 2.5, which is 10% of the usual starting dose, and she is 19. For Lexapro (which she is now off, and just doing CBT) she began at .6mg, when the lowest pill is 10mg!
I would treat the primary, obvious problems and stop the abx for a little while, to see what happens. The abx, which our child tried for 18 months, only made things so much worse. And they also created all kinds of GI and immune system problems over the longer term.
Today, she is a successful college student.
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tick battler
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Thank you all for your help...we saw Dr. J this week and he recommended stopping the Rifampin to see what happens. He said it can cause psych issues as a side effect in about 20% of cases!
It is too early to see any change yet, but I'm hopeful. Also, Dr. J recommended that we see someone to assist with the psych issues (OCD is what I'm most concerned about). The OCD was there before he started the Rifampin.
I'm now trying to figure out what psych doc to take my son to...not sure whether to start with a psychiatrist or a neuropsychologist...
I e-mailed Dr. V.S. (psychiatrist) in PA and she said she would be happy to see him. Has anyone had any experience with her (good or bad)?
Dr. J recommended either Dr. B (psychiatrist) in NJ or Dr. J.L. (neuropsychologost) in Manhattan.
I would love to hear your thoughts on where to start and would love any comments you may have on any of these doc's...
Thanks so much!
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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I have not gone to the Dr in PA you mentioned but I had once thought about it. Her office staff is so nice and she has had Lyme and Co. herself. I am not sure her prices are any better than the other LL psy.that Dr J reccomended but she has written lots of articles on Lyme. I have heard good things about her.
Stacy
Posts: 476 | From Columbus, Ohio | Registered: Aug 2007
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posted
I'm concerned about hearing of this side effect of Rifampin because I thought this med was supposed to help with this symptom of Lyme/Bart. She also has Babs D.
My daughter had slight OCD behavior before we knew she had Lyme, Bart, Babs. It got much better--but not completely gone--with Zith & Mino.
However, once she started Rifampin, she seemed to get even more OCD-ish, but I thought that meant the Rifampin was hitting the Bart and therefore a good sign.
How do I know if the OCD behavior is a positive sign in treatment from the Rifampin or a negative?
She has only been on the Rifampin for a little over a month.
Posts: 648 | From northeast | Registered: Feb 2009
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lymeparfait
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I recommend Dr. VS in PA..as I have heard good things about her, and was recommended to her after I already went to see Dr. B. in NJ. So I never waw Dr. VS
Dr. B. is just an "ok" psyciatrist, in my oinion.
I have had better experiences with psychiatrist in my past, unrelated to lyme, that I am having with Dr. B, as far as the time and interest he takes with my child.
He does understand lyme, and most likely has lyme himself, as he is extremely unorganized and short with us when we have seen him. I have to remember everything to ask him, about dosage, and timing of meds...and remember to ak him for the next appointment,a nd remember to ask him for hte bill!!!HIs secty or assistant is not there during the appointments, so he is alone in the office when we have been there, with a full waiting room of patients. So many see him, he is very busy.
Although he did give my child what she needed. He was just not the type MD I needed to feel confident he was taking interest in my child...like she was just a number.
My intuition tells me he recommended an ADHD drug, VYVANCE, and is getting kick backs, like many MD"s who recommend specific brands. He said, do not take the generic...MUST take the brand...
When others I know say this particular drug is no different in generic form. (no fillers and dyes like some generics can have) this drug cost much more out of pocket, and the generic would have been free on my plan.
Any imput from others on the "newer" Vyvance? Anyone taken generic?
I think he may be burnt out lately..but he was nice and I have no complaints, as he did get me in very quickly for an appointment, and does take my hone calls...just would possibly think another one would be better as a first start. We just liVe close to his office, so it was convenient, and he is lyme literate...so that was our choice at the time.
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tick battler
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Thanks all for your input on Dr. V.S. I have left a message to schedule an appointment.
Unfortunately, it looks like the rifampin was not causing the behavior issues. It has been a week now and I'm not noticing a change.
I will give it a bit more time but want to put him back on it if there is a chance it could help the psych stuff down the road. I am already noticing that he is not sleeping as well (awake until 10 pm one night) and one day he said his eyes hurt. That symptom had gone away on Rifampin, so I know it was doing something.
Today I took the kids to the beach in NJ with the help of a babysitter. Much of the time was great but the slightest thing will set my son off into a rage where he hits or throws things. At one point, he got mad and threw sand at my 2 year old daughter, who was covered with sand in her face and mouth.
Another time he didn't want the sandwich we made him for lunch so he threw it back at us and punched at it when I tried to give it to him.
Then later, when we were getting ready to leave, I was trying to clean the sand off of the kids in the ocean and then told them to walk to the boardwalk without sitting in the sand and, of course, he got down and started rolling in the sand. He is so OPPOSITIONAL.
It is very maddening and upsetting at the same time. He won't come when I call him or do what I say, so I constantly have to grab him arm to take him where I want him to go. It's like I have a toddler again, except one that talks back.
Thanks again all for your support. It really helps.
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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tick battler
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amomwithhope -
Regarding your question about the rifampin...it is very hard to know what is a herx or what is a side effect. That's what I'm trying to figure out as well.
I would just give it a bit more time to see if you see a change for the better. We started noticing most of the changes in my other son with Rifampin after about 5 weeks. Before that, his symptoms had worsened upon going on it.
Keep us posted on your daughter's progress. I hope you see a turnaround soon. Have you noticed any improvement in physical symptoms? That, to me, was a good indicator that it was helping my son who really improved on it. The physical symptoms improved much quicker than the mental symtpoms.
Thanks,
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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Sorry I was out of the loop in getting back to you and didn't know my mailbox was full!
My daughter did a 21 month combo of mepron/zith with some probiotics along the way. She also started that with a NO sugar, NO white carb, high veggie, almost no fruit diet. She had such constipation.
She is still a "neat" person now, but she does not cry and tantrum if she cannot get the blanket on her bed straight. Also other things like finding every sock and shoe to be excrutiating (must of been skin sensitivity) are gone!
We did some probiotics, but not tons and after treatment she had about 2 months straight of burping which was her system straightening out. Despite being very compliant with the mepron/zith, getting yogurt or probitics in has been impossible! Instead, I began giving her garden veggies and greens unwashed and made frenchfries with the skins on.
I feel that today the psyche issues are 100% resolved and it terrifies me how close we came to not figuring it out! Everyone said she was "fine", it was in mine and her heads, even her dad said "she just had a blue personality."
But I KNEW as the mother there was something wrong. The nightsweats, the abdominal pain, the burning urination, the sickly sweet smell on her breath! Not to mention, pain everywhere- constantly moving.
I now believe that all psyche illnesses are biological or chemical in origin. I have a cousin who is on 5 psyche meds a day, carpal tunnel, endo, etc. She was tested for lyme after my daughter's experience- guess what? Positive!!!!! She's not really dealing with treatment- and she's probably been ill for 35 years, but knowing that there is a bacterial infection behind some of this has been life changing because while she may be injured- it's not her fault. She's not just weak, damaged, she's infected and that's something different.
I will also pm you to let you know this is here.
Posts: 524 | From Hudson Valley, NY | Registered: Jul 2007
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lightparfait
Frequent Contributor (1K+ posts)
Member # 22022
posted
I agree about the psych symptoms being biological or chemical in origin.
Mothers do know and can get a clear intuition.
I also believe that some are inherited.
The AI Therapy has cleared this for my daughter.
Here's the link for those lead to research this novel approach. No LLMD, except Dr. K. understands this approach in the USA, IT's German.
But it is a very easy protocol. 5 small drops of energized water, no flavor, under the tongue, 3 x day for two weeks. so easy for kids!
A saliva sample is sent to GErmany so they can make the individual drops after they test the DNA for disregulations in pathways.
so you take the drops for two weeks, and then send another saliva sample. Wait to receive the new two week dose in the mail, then take it again.
The teens I personally know have released all their psych issues in the first few rounds of this protocol. It has been amazing for us.
blessings to your children!
Posts: 1009 | From NJ | Registered: Aug 2009
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tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
lightparfait-
You have peaked my interest about the allergie-immune. I have posted separately to hear other's stories.
Did these teens that improved have lyme causing the psych issues?
Is your daughter also on abx for lyme?
catskill- Thanks for your response. Did your daughter ever test positive for bart? It's wonderful that she didn't need other meds along with the Mepron/zith. My poor little ones are on 3 abx plus artemisinin. They are improving but it is slow.
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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lightparfait
Frequent Contributor (1K+ posts)
Member # 22022
posted
The teens psych issues were not caused totally by the lyme we(the parents) now believe.
In the beginning we blamed lyme for them all, now we think the lyme brought them out, but were related to either pre-existing inherited emotional blockages, that AI addressed in their testing and treatment, as well as environmental toxins from chemicals, pesticides on food, or metals.
It appears I passed loads of mercury to my daughter from my amalgam fillings...that she is dealing with!
These were individually identified in our kids.
It sounded "way out there" to us, but we were intrigued by this therapy, and decided to give it a try.
The teens, as observed by me and my neighbors, have improved with emotions, and now have no anxiety or depression. (not everyone posts on lymemet that is doing this therapy...)
These kids are old enough to express to us what they feel and the changes they know have taken place with the therapy. This is why I recommend it.
They seem to have less disregulations than us parents still on the therapy.
My daughter is not on abx now, as her lyme is gone.
I am not saying the AI took her lyme away...but it was definitely a factor in it! Her immune system was finally able to function without working on overtime handling other disregulations, that were corrected with the AI therapy. Her immune system kicked lyme's butt!
But she was on abx for 1 1/2 years for RMSF, Ehrlichiosis and lyme. She got off abx, after the co-infections tested negative, and her symptoms were down and feeling much better.
She was now able to function, but still feeling very low and severely depressed before we started on the AI therapy.
I wanted to give her a break and detox her some before beginning the neuro lyme abx which was originally recommended by her LLMD. During this break time, I read about the AI therapy on lymenet, and was drawn to try it...for her!
"We are only as happy as our children", I once heard, and I knew my healing is emotionally tied very tightly to hers.
To those interested in this for their children...I would recommend getting your children's bacteria load and viral load down enough to function before starting this if possible. You don't want to add more things to their body burden as their body is re-booting or regulating.
The therapy draws toxins out of the body and the symptoms that occur are not die off, but related to toxin dumping. so the only protocols with the drops are taking binders occasionally when needed for elimination.
The adults seem to need more than the teens.
Because this therapy is recommended to be done without additional supplements or drugs or chemicals, to go al natural!
Many are using some supplements or protocols that need them to survive.
Hopefully you will get some more responses on your additional post.
Best wishes lp
Posts: 1009 | From NJ | Registered: Aug 2009
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