posted
My teen has always had ocd symptoms. Mild,weird and quirky things. She had undertreated lyme as a toddler and at 11 was reinfected. OCD got worse the first 2 years of treatment, but was manageable. For example, writing drove her nuts because the letters had to be perfect. So, she typed.
When she started tindamax, twice a week, her reaction (herx?)was lyme stuff, including a relapse of what appeared to be a neurapathy in her leg. (numb and could not move it).
In January, she developed a c-diff infection that is not responding to flagyl. While on the flagyl she lost movement in the leg again and developed bartonella streaks (she has them elsewhere on her body) on the same leg. In April,the loose bowls cleared and the leg returned to normal. Marks still there.
Still tested positive to c-diff. Flagyl causes really bad depression (self report) and the OCD has morphed into this "eating disorder" thing where now she will not eat for fear of gaining weight. I have her off the flagyl for now and she will see a gi dr.
I called a behavioral therapist, who said..whoa..she needs meds for the OCD.
She has been off the flagyl for 10 day. I think it threw her over the edge mentally.
Advice is needed and appreciated. I never get afraid, but I am right now.
Thank you.
-------------------- I found my original identity! It has been a bit over 12 years...can't blame me for forgetting my password, right?!!
Member red (Member # 1886) Registered: 26 November, 2001 70 posts Posts: 164 | From NJ | Registered: Jan 2009
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posted
Hi Pepperspeck, My dd has lyme/bartonella and PANDAS. (pediatric autoimmune neuropsychiatric disorder associated iwth strep) Both the PANDAS and the Bartonella can cause OCD symptoms, which are my daughter's main symptom. Kids who have infectious causes of OCD often worsen on traditional ocd medications, but that has not been the case for my daughter. She has successfully taken Zoloft in the past and now takes Celexa. You just never know until you try, whether these medications will help or not. Our family dr. prescribes it. You do have to monitor your child closely when they begin an SSRI because a small percentage of depressed individuals get suicidal while on SSRIs. I don't think that is usually a problem with kids with OCD, but better ask your dr. Those meds have really been a life saver for us at times. They have never taken the OCD completely away, but have taken the edge off so she is much more functional.
It is likely that the flagyl caused a siginificant herx which shows in your dd as OCD. Unfortunately, in order to get well, she may need to get through it. My daughter worsened upon beginning Tindamax (does the same thing as Flagly) for 16 weeks and has only recently begun to improve a little bit. Bartonella can take some time to eradicate in some people. Was she on Flagyl daily or just two days a week? If it was daily, maybe going to two days a week would help? Best of luck to you both.
Posts: 41 | From Somewhere over the rainbow | Registered: Apr 2011
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Thank you so much for sharing your dd's experience. I am happy to hear that your daughter did respond to the med. I understand what you mean about the drug taking the edge off and making them functional. It is hard to imagine what nonfunctional is until you see it, especially in your child.
She has been on flagy daily because of the c-diff. There were breaks to retest for the c-diff. It was the last round (3 weeks in) that things got really, really dark for her. She was already having psych issues (tolerable though) with the tindamax.
Thank you so much, again, for reaching out to me.
-------------------- I found my original identity! It has been a bit over 12 years...can't blame me for forgetting my password, right?!!
Member red (Member # 1886) Registered: 26 November, 2001 70 posts Posts: 164 | From NJ | Registered: Jan 2009
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ks90
Unregistered
posted
Pepperspeck, does your teen still have her memory intact?
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posted
She had neuropsych testing done and there are significant issues with her short term memory and working memory as well as other issues. These were not present prelyme.
Do you have memory issues? I see in your signature that you had to leave college. I am not sure when that happened, but I do hope things get better for you with treatment.
-------------------- I found my original identity! It has been a bit over 12 years...can't blame me for forgetting my password, right?!!
Member red (Member # 1886) Registered: 26 November, 2001 70 posts Posts: 164 | From NJ | Registered: Jan 2009
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posted
Thank you JKmom. I actually called a ll psychiatrist here in NJ today but they were on lunchbreak and I did not call back. Maybe you could PM me the name, to see if it is the same one?
I am not familiar with the therapy that you mentioned. I will have to look into that.
She stopped eating while on the flagyl the third time. The flagyl was for c-diff. Her regular lyme meds were stopped, of course. So in theory, if it was breaking up cysts there was nothing to get the active form. This has been since Jan, with a couple of weeks break twice to retest for c-diff.
My daughter was doing sooo much better until this hit. I know that we will get her through this, it is just new territory for me.
I am happy that your daughter's OCD is much better. Even when it was mild with my daughter, it was often a huge burden for her and me to witness.
Thank you so much for taking the time to share with me.
-------------------- I found my original identity! It has been a bit over 12 years...can't blame me for forgetting my password, right?!!
Member red (Member # 1886) Registered: 26 November, 2001 70 posts Posts: 164 | From NJ | Registered: Jan 2009
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posted
Just wanted to let you know that it was about 4 weeks into Tindamax (cyst buster, like flagyl) that my daughter really took a turn for the worst. I think it was the build up of toxins in her body from the die off. We really focus on doing a lot of detox which has helped too.
Also, I want to mention that sometimes Advil (only Advil, rather than tylenol, etc) reduces OCD in kids who have OCD due to inflammation of the basal ganglia, which is what happens when you have a chronic infection. Inflammation is the reason that these kids get OCD, because the chronic infection causes inflammation. You can try giving it 3 times a day at the maximum dose for her weight and see if it helps. You could call a doctor and see what the maximum dose would be for her. It's often higher than the bottle states. Best of luck to you. I know how difficult it is to see your child suffer with OCD. It's been a nightmare! Eating issues have surfaced in the past, but thankfully are a thing of the past. That was a scary time for me.
Posts: 41 | From Somewhere over the rainbow | Registered: Apr 2011
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
Hi peperspeck and all:
Our daughter has Lyme and Babesia. Minor OCD which was before Lyme.
Has been on Mepron and Zith since May of 2010, added Tindamax Sept 2010 (250mg 2 days / week).
In January we upped the Tindamax to 500mg 3x / week but she couldn't tolerate it and we went back to the 250mg /2x week. Had to stop 6 weeks or so ago due to severe itching issue.
The itching has stopped except when she now gets anxious for any reason.
One item on the Tindamax (my wife called the manufacturer and did have a long discussion). Two points is the alergic reaction my daughter was having is known to occur especially in those with parakeratosis (which my daughter had from right after birth).
Also, anorexia is also a know side effect which my daughter was exhibiting. It had reached the point where we needed to address this. She would still eat but not much. Fortunatley after about 4 weeks off of the Tindamax she started to pick up her eating.
Now with the neuro benefits she exhibited while taking the tindamax when we think she is over this disease I'd like her to take this for the last two months. Especially after seeing Dr. S of UNH work on how this decreases the spirochete and cyst loads.
momaine your experience was a turn for the worse with Tindamax. It took 8 to 10 weeks but by the 10 week our daughter was able to start tollerating a tutor again. At first only a half hour but we are now at 2 hours.
We are only on mepron and zith now. Our fear is the neuro symptoms come back.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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posted
momaine, the information about advil is interesting. I am going to look into that. I have had her detoxing all along and even more so since I stopped the flagyl. Prior to the c-diff, she had been on tindamax 2x a week and was having psych flares from that but not like what happened with the weeks of flagyl.
t9im, I too began to see cognitive improvement in my daughter after a couple of months of tindamax. Unfortunately, at the same time her ocd was going out of control and I did not know this. Then she had to go off lyme meds because she developed c-diff and that is where the flagyl came in. Lots of cyst busting and nothing to get the active form and she just crashed? I do not know.
When I came off of IV antibiotics years ago, I followed up with a year of grapefruit seed extract. I was trying to hit yeast but now some feel that it breaks open cysts. At the time, the llmds were not even using tindamax or flagyl for cysts. I absolutely would want to knock out all the cysts I could, but just be sure the immune system can handle it.
Thanks so much for sharing. She is showing some improvement in that we are not in a crisis like we were over the weekend. She has so much going on.
-------------------- I found my original identity! It has been a bit over 12 years...can't blame me for forgetting my password, right?!!
Member red (Member # 1886) Registered: 26 November, 2001 70 posts Posts: 164 | From NJ | Registered: Jan 2009
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Sometimes food allergies and/or gluten sensitivity/Celiac can be at the root of OCD/Anorexia, too...
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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Yes, I was thinking about this. Because her GI system is so impaired right now, I wondered if she had developed a sensitivity to what she can digest. But, because her caloric intake is so low and I do not think she could mentally switch to something else I did not suggest anything to her.
She is and has been dairy, wheat, gluten, sugar, artificial anything free for a long time.
We see a ped. GI Dr. again soon so hopefully there is some improvement in the c-diff situation which would be a piece of this mess.
Thank you.
-------------------- I found my original identity! It has been a bit over 12 years...can't blame me for forgetting my password, right?!!
Member red (Member # 1886) Registered: 26 November, 2001 70 posts Posts: 164 | From NJ | Registered: Jan 2009
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Carol in PA
Frequent Contributor (5K+ posts)
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posted
quote:Originally posted by momaine: ...OCD due to inflammation of the basal ganglia, which is what happens when you have a chronic infection. Inflammation is the reason that these kids get OCD, because the chronic infection causes inflammation.
Ahhh....maybe that's why OmegaBrite helps with mental health symptoms.
The high EPA reduces inflammation.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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posted
"Lots of cyst busting and nothing to get the active form and she just crashed? I do not know."
That seems like a very likely reason. I don't know anything about C-diff. (hope it stays that way) How long before you can go back on Lyme antibiotics?
Momaine (who started Flagyl today for the first time)
Posts: 41 | From Somewhere over the rainbow | Registered: Apr 2011
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posted
I will look into OmegaBrite Carol. Thank you.
momaine, the c-diff is not clearing (positive tests and continued symptoms) so the meds she was on for lyme were stopped. I too hope that you never know c-diff! I was told by the GI dr. that prebiotics are important for some people in keeping c-diff away or helping it go away...in addition to probiotics. She was taking probiotics and florastor during treatment but got the flu and then everything fell apart.
-------------------- I found my original identity! It has been a bit over 12 years...can't blame me for forgetting my password, right?!!
Member red (Member # 1886) Registered: 26 November, 2001 70 posts Posts: 164 | From NJ | Registered: Jan 2009
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posted
I am going through the flagyl/ketek routine now and can attest to the violent reactions it causes. I tremble, sweat, hurt and feel very edgy. I have to take several drugs to sleep.
But my memory and speech are improving and, in spite of the misery, we think I am getting better.
My husband has had OCD for years. He is gradually ramping up the meds for it and it seems to help him a lot. We recently learned that he probably has lyme, too. His doctor reports amazing results with OCD meds these days.
-------------------- DOCTOR: "I don't think you are sick." PATIENT: "We are all entitled to our opinions. I don't think you are a doctor." Posts: 697 | From Northern California | Registered: Jul 2009
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posted
Another player in OCD seems to be glutamate excess. This is being studied as a contributor to a whole host of neurological disorders. I think that with the chronic inflammation we get with Lyme, we get dysregulation of many neurotransmitters, amino acids, minerals etc. In the body, which then lead to many neurological problems.
My daughter also has been debilitated by OCD. Prozac has really helped her a lot. But I also have her taking small doses of N-Acetylcysteine, known to be a glutamate modulator. Yale's OCD center is conducting a clinical trial using a combo of SSRI and NAC to treat. They are using much higher doses than I would dare use without doctor approval, but NAC has many benefits,including liver detoxification, so could be safely incorporated in most protocols.
If anyone is seeing the psychiatrist in NJ, you could ask him about this. I don't how he feels about NAC but he does recognize the glutamatergic dysfunction.
Another thing that has helped my daughter has been integrative manual therapy, which i would call acupuncture without the needles. Though I do think it is more precise than acupuncture.
And finally, after time on these protocols, my daughter was finally ready for psychotherapy with a wonderful psychologist who understands lyme! He is carefully guiding her in replacing her OCD responses with healthy ones. Long process, but I feel we are slowly emerging from a very dark, Nightmarish tunnel!
Hang in there.
Posts: 422 | From Herndon, Virginia | Registered: Oct 2005
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posted
We have an appointment with a psychiatrist. There is a wait, but what can you do. In the mean time, I am going to see about the NAC and the therapy.
I have had no luck finding a therapist for her to talk to. Once they hear her history, it is a "no..too complicated". Umm...so where do the complicated cases go?
Lymeout, you mention that it took your daughter a while to be ready for psychotherapy. Does this mean that the meds brought things under control enough for her to actually be an active participant in therapy? My daughter is so frozen in the grips of OCD that I can not see how therapy alone would benefit her or how she could even participate at this point.
I am happy to hear reports of progress after work to get this under control. It is so hard.
-------------------- I found my original identity! It has been a bit over 12 years...can't blame me for forgetting my password, right?!!
Member red (Member # 1886) Registered: 26 November, 2001 70 posts Posts: 164 | From NJ | Registered: Jan 2009
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