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OCD worse by the week...


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OK, so how long until we see any light? Because right now we are on a steady decline since mid-Feb, saw Dr. Jones late March and added Bactrim to abx cocktail, still slow steady decline. Does not sound like any herxes I read about here, just day by day more OCD issues, all contamination. I soooo wish it did sound like a herx, believe it or not. No tics, no aches or pains, no fatigue (quite the opposite), no rages, no anxiety, no skin stuff, no headaches. No one in the house is sick (ever). Last week Dr B changed Augmentin to Vancomycin, still same. Still declining. Nothing better. Not a thing. No sense in keeping a log, it would read the same every day with a new line, "slightly more OCD issues." Really??? We do detox, probiotics, etc. I can plow on, as we have since mid-Feb ...but our house/family is in a tailspin here, holding breath all the time.

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Laure-

 

My girls are pandas- looking at lyme, but not feeling chronic lyme is our major issue- but frankly, who knows?

 

I have found, that my girls do not (mostly) get better without immunomodulation, meaning pex or steroids. They were in crisis (ocd) in January, and we did receive a "go ahead" on an oral steroid burst from two docs that treat lyme. It reversed our trend, so we could continue healing. I am afraid without it, we would still be in a horrible place.

 

Talk to your doc. I think steroids can "lower your resistance" to illness, but do not really "immunocompromise" you unless taken more long term. I am sure Dr Jones will have an opinion- be clear to him how debilitating the ocd is.

 

This is the biggest issue for me with the lyme and pandas thing, and why (for me) it is SO important to figure out the relationship, and what my kids, all of our kids, have. It is not just a name or label, but the whole premise on how to treat the child. Steroids are contraindicated by lyme docs, and a lifesaver for treating pandas.

 

I feel for you- for we suffer with ocd here. Both girls were so bad in January- and it makes them SO miserable. We were almost at 100% and they both got strep a few weeks ago, so now we have had a significant "bump" in ocd (and the anxiety, depression and combustibility) that go along with it.

 

Hang om there!

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Laure-

 

My girls are pandas- looking at lyme, but not feeling chronic lyme is our major issue- but frankly, who knows?

 

I have found, that my girls do not (mostly) get better without immunomodulation, meaning pex or steroids. They were in crisis (ocd) in January, and we did receive a "go ahead" on an oral steroid burst from two docs that treat lyme. It reversed our trend, so we could continue healing. I am afraid without it, we would still be in a horrible place.

 

Talk to your doc. I think steroids can "lower your resistance" to illness, but do not really "immunocompromise" you unless taken more long term. I am sure Dr Jones will have an opinion- be clear to him how debilitating the ocd is.

 

This is the biggest issue for me with the lyme and pandas thing, and why (for me) it is SO important to figure out the relationship, and what my kids, all of our kids, have. It is not just a name or label, but the whole premise on how to treat the child. Steroids are contraindicated by lyme docs, and a lifesaver for treating pandas.

 

I feel for you- for we suffer with ocd here. Both girls were so bad in January- and it makes them SO miserable. We were almost at 100% and they both got strep a few weeks ago, so now we have had a significant "bump" in ocd (and the anxiety, depression and combustibility) that go along with it.

 

Hang om there!

 

Dr. B put her on 6 days steroids two weeks ago, 30 mg. once a day. They did not budge her! Then he switched her abx the following week, thinking she might have developed resistance to the augmentin. Also still on zithromax, tindamax on weekends, bactrim. No clue here!!!

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I do believe its a herx....'I know, I know' its counter intuitive but I think you might need to lighten load of antibiotics instead of increasing or switching to give her a break. She is worse due to all the changes made in that last two months and especially with the Vancomycin added last week. You can suspend antibiotics for 48 hours to see if she improves. If she does then you need to make a decision about a tolerable herx level or plowing through..... This can go on for months. Trust me your experience is no different and unfortunately there is not a lot written about neuropysch systems and herxheimer's. She is on a lot and could probably be fine with a little less.

 

For example: Our younger DS started Rifampin on March 29th and within two days rages were back. Since then rages have picked up tremendously are almost a daily occurrence. He had previously been OCD free for a very long time and we are now seeing blips of it where a specific person can't look at him or talk to him without him coming unglued. Just yesterday I had put on and take off his swimming bubble several times 'just me' and then he finally had to switched to his sisters pink bubble to get him satisfied. The OCD, rages and rashes are his main symptoms no physical complaints either. The worsening of behavior makes for a very rough family life and we limit our outings with him because its so hard to control in a public setting. Frankly, we are exhausted but we will push through. ON THE PLUS SIDE he played with unknown children at the playground this weekend for the very first time since I can remember. Previously he was too paralyzed to enjoy running around and typically just watched others play or played with his twin sister.

 

BIG HUGS.... We've been through so many herx responses with our family you'd think it wouldn't bother me that my son is worse but it is STILL very worrisome. We see our Dr. often so that helps to give me confidence as we plow through.

 

-Wendy

Edited by SF Mom
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Sorry laure! Is she positive for Bartonella? Is she being treated for it? Do you have a follow up appt. with Dr. J?

After a nice honeymoon of good weeks from lyme treatment, we also have been dealing with increasing ocd since mid-January. Our llmd just increased her Minocin to twice a day (for Bartonella).

Edited by philamom
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Because right now we are on a steady decline since mid-Feb, saw Dr. Jones late March and added Bactrim to abx cocktail, still slow steady decline. Does not sound like any herxes I read about here, just day by day more OCD issues, all contamination. No tics, no aches or pains, no fatigue (quite the opposite), no rages, no anxiety, no skin stuff, no headaches. No sense in keeping a log, it would read the same every day with a new line, "slightly more OCD issues."

 

 

laure -- so sorry -- it is so hard. i don't have any insight into your situation but wanted to mention our story.

 

we follow a bit of a different course with an integrative MD, who does a form of ART, we treat with homeopathy. last july, ds started an anti-viral that he had an intense herx-like reaction to. it was a contamination OCD reaction involving food. it was hot july and each day for about a week and a half, he drank just enough liquid to keep him out of the ER for IV hydration. it was very scary. that intensity lasted for only about a week and a half and then slowly faded. but i do still remember him having slight contamination food issues in sept, when we went on vaca. he was also quite hyper and had time issues then -- about 2 mths after the intense time.

 

so, for us, his herx-type was contamination and neuro/mental issues. he has never had aches/pains and had headache and fatigue only at onset and up til 6 mths after -- 1 year before this reaction. never during treatment for TBI and other infections.

 

i think a herx can be individual to the person, their general state and what bugs they are fighting and can last varying amounts of time.

 

i think around then, i also stopped with a log for that same reason. perhaps you could keep a different log of good or surprising things that you see and see if those increase rather than noting all the troublesome things and looking for decreases -- ?

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Hi Laura. Big hugs. You've got to be exhausted from all this. I know every change is overwhelming watching and waiting for any reactions/symptoms. May not apply to your case, but Colin was TERRIBLE following tindamax for about 4 days. Rages, anger! Even woke up in the middle of the night, fuming angry over nothing! Dr. J cut his dose in half on weekends and it's definetly helped. Maybe cutting Tindamax back??

 

darlene

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Sorry laure! Is she positive for Bartonella? Is she being treated for it? Do you have a follow up appt. with Dr. J?

After a nice honeymoon of good weeks from lyme treatment, we also have been dealing with increasing ocd since mid-January. Our llmd just increased her Minocin to twice a day (for Bartonella).

 

 

The bactrim is supposed to be treating bartonella, although it is just a clinical diagnosis by Dr. J. He suspects bartonella I think because of the OCD presentation. She actually has not tested positive for a co-infection on Igenex yet, just Bb. Follow-up is not until late July. We had a honeymoon from the OCD throughout most of December and January.

Edited by laure
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I do believe its a herx....'I know, I know' its counter intuitive but I think you might need to lighten load of antibiotics instead of increasing or switching to give her a break. She is worse due to all the changes made in that last two months and especially with the Vancomycin added last week. You can suspend antibiotics for 48 hours to see if she improves. If she does then you need to make a decision about a tolerable herx level or plowing through..... This can go on for months. Trust me your experience is no different and unfortunately there is not a lot written about neuropysch systems and herxheimer's. She is on a lot and could probably be fine with a little less.

 

For example: Our younger DS started Rifampin on March 29th and within two days rages were back. Since then rages have picked up tremendously are almost a daily occurrence. He had previously been OCD free for a very long time and we are now seeing blips of it where a specific person can't look at him or talk to him without him coming unglued. Just yesterday I had put on and take off his swimming bubble several times 'just me' and then he finally had to switched to his sisters pink bubble to get him satisfied. The OCD, rages and rashes are his main symptoms no physical complaints either. The worsening of behavior makes for a very rough family life and we limit our outings with him because its so hard to control in a public setting. Frankly, we are exhausted but we will push through. ON THE PLUS SIDE he played with unknown children at the playground this weekend for the very first time since I can remember. Previously he was too paralyzed to enjoy running around and typically just watched others play or played with his twin sister.

 

BIG HUGS.... We've been through so many herx responses with our family you'd think it wouldn't bother me that my son is worse but it is STILL very worrisome. We see our Dr. often so that helps to give me confidence as we plow through.

 

-Wendy

 

 

I do think it would be a lot easier if we saw Dr. Jones more often. But his assistants are pretty available by phone and will spend a while speaking with me, then with him, then getting back to me. In the end, if I opt for treatment of one type of another, I feel the docs will go along with it. Almost wish they were more opinionated...

I am very close to pulling her off everything and giving her a break - see if she improves, etc. How long would you think we would need to steer clear of the antibiotics? But keep up with the clay and probiotics? Jodie, any opinion?

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Sorry laure! Is she positive for Bartonella? Is she being treated for it? Do you have a follow up appt. with Dr. J?

After a nice honeymoon of good weeks from lyme treatment, we also have been dealing with increasing ocd since mid-January. Our llmd just increased her Minocin to twice a day (for Bartonella).

 

 

The bactrim is supposed to be treating bartonella, although it is just a clinical diagnosis by Dr. J. He suspects bartonella I think because of the OCD presentation. She actually has not tested positive for a co-infection on Igenex yet, just Bb. Follow-up is not until late July. We had a honeymoon from the OCD throughout most of December and January.

The suggestion to lessen the load some sounds like a good idea. You may also want to contact Dr. J's office to get his opinion. Hang in there!

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You could give her a 48 hour break to see if there is improvement. Many have been advised to do this that are Dr. J patients. Some have even gone as long as three weeks 'this would make me a little nervous due to potential rate of relapse' without the direction of Dr. J. If she improves even slightly you can have confidence that this is a herx response. Then you might consider a 'lessor' more tolerable treatment regime recommended by Dr. J. Like no Tindamax and maybe just Bactrim/Azithro or Vanco and one other antibiotic and adding one back in at a time. Or, you can decide to push forward but it might be a very long time for a reprieve.... Again, it was a 12 week process when we first started Lyme treatment for older DS. He was a lot, lot worse and had many symptoms that were present during sudden on-set. For others the 'herx' has been longer. We also picked up a new symptom from Jan. 2nd antibiotic rotation with older DS that has still not resolved 18/19 weeks later 'much improved but not gone'. It is very scary to watch these set backs.

 

Big hugs again.

 

-Wendy

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Gosh, we are in the same boat. :( I wish I had some words of wisdom or an uplifting story. I don't. Twice we've done a day or two break from antibiotics and because her OCD lessened right after the break, it leads us to believe that indeed, the worsening of OCD is a herx, depsite not really having other symptoms, except the rashes when she showers.

 

We just saw Dr. J last week and he suggested possibly getting Plasmapherisis and to ask Dr. B about it. Dr. B didn't think we were in a spot to need it quite yet, but because we had a friend with us, I don't think we did a very good job explaining just how miserable she is when there are no friends around.

 

Dr. J also recommended we find a psychiatrist and try adding some neuropsych meds. We see our family Dr. tomorrow and we'll see what she can do. If not, maybe we'll look for a psychiatrist. I really hate the idea of explaining all this to another dr. (esp. a non-believer) We just can't keep going on like this. Dr. J really didn't want to back off on antibiotics though.

 

Dd did just get 1.7g/kg of IVIG. Maybe that will help. Dr. B was hopeful that it would.

 

Hang in there.

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I meant to ask, when did you start Lyme/bartonella treatment? I asked Dr. J to give me a worst case scenerio timewise, before we see improvement and he said 6 months, even though he seemed like he'd rather not answer. We are half way to six months. Some days just feel hopeless, like its never going to happen. Dr. J made me read his sign that says, BELIEVE. A patient got it for him. THe child got well and said to dr. J that he needs to just tell all his kids to BELIEVE and they will get well. I want to, I really do.

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OK, so how long until we see any light? Because right now we are on a steady decline since mid-Feb, saw Dr. Jones late March and added Bactrim to abx cocktail, still slow steady decline. Does not sound like any herxes I read about here, just day by day more OCD issues, all contamination. I soooo wish it did sound like a herx, believe it or not. No tics, no aches or pains, no fatigue (quite the opposite), no rages, no anxiety, no skin stuff, no headaches. No one in the house is sick (ever). Last week Dr B changed Augmentin to Vancomycin, still same. Still declining. Nothing better. Not a thing. No sense in keeping a log, it would read the same every day with a new line, "slightly more OCD issues." Really??? We do detox, probiotics, etc. I can plow on, as we have since mid-Feb ...but our house/family is in a tailspin here, holding breath all the time.

 

 

You are not alone. My son has never "herxed" by the classical definition. Sounds same as what you are experiencing. My son did test positive for Bartonella and doc. associates raging and OCD with Bartonella. His OCD continued to get worse from December right until - recently. Not sure if he's really getting better or the threats of sending him off to Wisconsin this summer (Rogers Institute) have finally caught his attention. Everything is so low and slow we can not tell the difference between changes and well, just changes.

 

bill

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I meant to ask, when did you start Lyme/bartonella treatment? I asked Dr. J to give me a worst case scenerio timewise, before we see improvement and he said 6 months, even though he seemed like he'd rather not answer. We are half way to six months. Some days just feel hopeless, like its never going to happen. Dr. J made me read his sign that says, BELIEVE. A patient got it for him. THe child got well and said to dr. J that he needs to just tell all his kids to BELIEVE and they will get well. I want to, I really do.

 

 

She started lyme treatment Dec. 1 and immediately improved to about 80%. It was glorious! We changed nothing, but in mid-Feb she began a slow steady decline and relapse of all OCD symptoms. April 1 she began treatment for bartonella per Dr. J. No change at all, just keeps declining at the same rate. In March Dr. B ran titers which came back about 250 ASO and 978 anti Dnase B. Higher than ever before. No strep anywhere in the family though. So almost 3 months now of slow steady decline, despite changing abx, steroid burst, probiotics, detox, etc. etc.

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