I need some help here...tough times w/ocd

[lmi1973]

I really need help right now. My son’s ocd is so bad that he’s been crying/hitting himself and whimpering over and over “please help me mama“. I thought he was possibly herxing again, but this is going on two weeks now and I don‘t know how much longer I can take helplessly watching him suffer.

 

Some background - he is 10, going to be 11 in three weeks. He had sudden onset of ocd in the fall of 2010, was clinically diagnosed with pandas by dr. K in January, 2011, received ivig at the end of February, 2011. More bloodwork done in April showed mycoplasma (positive IgG and IgM) and anaplasma; at that time we were referred to LLMD.

 

Has been on Amoxcillin 500mg 2x/day since the end of February (from Dr. K) and has been on minocycline since about May I think (was originally on doxycycline but had bad allergic reaction to it)

 

Once he started lyme treatment (doxy and then minocycline), that was the first time we started to see improvement. His ocd really went down and we were at about 80%. I have started to see a pattern of herxing that seemed to be about every 4 weeks where his ocd and anxiety would skyrocket for a little over a week and then it would come back down.

 

But, right now, he is so so bad and the increase in ocd and anxiety is going on two weeks. I don’t think he’s been exposed to anything. I have tried to keep everything as stress free as possible. I just don’t know what to do to help him. After three hours of watching him this morning not be able to get out of his bed b.c. he had to finish some ocd ritual in his head before he could, I started to consider taking him to the emergency room.

 

The only reason I thought they might help us is because he does have some physical complaints as well. He complains of blurry vision frequently, constant upset stomach, and he also added that he can’t hear out of one of his ears sometimes, like it switches from ear to ear. The worst was that his hallucinations came back today… They had been gone for several weeks now. He has auditory hallucinations - he heard voices asking him what it’s like to live in more than one century today and other things that he said he didn’t understand or know how to answer. He has violent/disturbing “visions” that he normally won’t describe to me.

 

I asked his Lyme doctor in Stevensville, MD the other day during our phone consultation if 1) we should/could try ssris to help him and 2) if people ever did IV antibiotics when psych symptoms were so bad. He said he would not recommend ssris because his body is so out of whack as it is and because there have been so many suicidal reports from them. As for the IV antibiotics, he said they wouldn’t do them unless the oral antibiotics stopped working and/or we had positive blood tests for lyme. We do have positive blood tests for mycoplasma and anaplasma, but the western blots came back negative twice. The Stevensville, MD doctor clinically diagnosed him with Lyme and Bartonella.

 

But, I thought maybe it was possible that the ER doctors might help us since we had some positive bloodwork? I was ready to cry and beg the ER doctors to help, like please hook up an iv to him, but, the thought of them not helping and/or hauling him off to a mental institution stopped me - I turned the car around three times not able to make up my mind, then I just gave up and drove him home.

 

Any advice/encouragement is appreciated. Specifically, has anyone done IV antibiotics? Has anyone seen their children’s ocd clear up once the infections have been properly treated?

 

I am going to try to get him into his pediatrician tomorrow and just let him know how desperate we are, if there is anything he can do. I just don’t see how my son can heal when he is under constant enormous stress from the ocd and anxiety?

 

p.s. In addition to the antibiotics, he is also on dilfucan for yeast and the following supplements: inositol, cats claw, magnesium, C, D, E, B6, B12, Folic Acid, lithium oratate, 5HTP, Gaba, omegas, flaxseed oil, and primrose oil. We do daily epsom salt baths for detox. We have gone gluten free and have given up caffeine.

 

Okay, thanks for the shoulders…

God Bless,

Laura

[LNN]

Any advice/encouragement is appreciated. Specifically, has anyone done IV antibiotics? Has anyone seen their children’s ocd clear up once the infections have been properly treated?

 

I am going to try to get him into his pediatrician tomorrow and just let him know how desperate we are, if there is anything he can do. I just don’t see how my son can heal when he is under constant enormous stress from the ocd and anxiety?

 

p.s. In addition to the antibiotics, he is also on dilfucan for yeast and the following supplements: inositol, cats claw, magnesium, C, D, E, B6, B12, Folic Acid, lithium oratate, 5HTP, Gaba, omegas, flaxseed oil, and primrose oil. We do daily epsom salt baths for detox. We have gone gluten free and have given up caffeine.

I'm so so sorry to read your post. No child should have to go through what your son's going through.

 

First, PM TPotter - she's doing IV Abx for one of her sons. She's in your general neck of the woods (or at least of your LLMD).

 

Second, I know your LLMD has a respected reputation. But it sounds like you're not getting the support you need. Are you supposed to just ride it out while your son begs you for help? No detox advice? No guidance on backing down on anything? Did you discuss an abx holiday? Taking a little time off to let things calm down?

 

Third, I don't have enough knowledge about all of the supplements, but is it possible that some of them are contributing to the problem? Has he been on all these supplements for awhile? When he was 80%? I thought inositol and 5HTP acted in a similar manner. Could they be too much together? Are the doses of vitamin supplements based on blood work? Could toxicity be at play? It seems like a lot of supplements and not much in there for detox.

 

With all the things you have going into the body, it seems like you may benefit from someone who can guide you with detox and supplements. In the meantime, I might call your LLMD tomorrow and ask about a treatment holiday for 4-7 days to see what happens. Personally, I think you made the right decision to not go to the ER. You could end up with more doctors adding more stuff without understanding or believing in your diagnosis and you could potentially lose control of the situation. However, should your son ever get to a point where you feel he's in real danger of harming himself, that would be a different story.

 

I hope you're able to get medical support quickly.

[911RN]

 

 

But, I thought maybe it was possible that the ER doctors might help us since we had some positive bloodwork? I was ready to cry and beg the ER doctors to help, like please hook up an iv to him, but, the thought of them not helping and/or hauling him off to a mental institution stopped me - I turned the car around three times not able to make up my mind, then I just gave up and drove him home.

 

Any advice/encouragement is appreciated. Specifically, has anyone done IV antibiotics? Has anyone seen their children’s ocd clear up once the infections have been properly treated?

 

I am going to try to get him into his pediatrician tomorrow and just let him know how desperate we are, if there is anything he can do. I just don’t see how my son can heal when he is under constant enormous stress from the ocd and anxiety?

 

p.s. In addition to the antibiotics, he is also on dilfucan for yeast and the following supplements: inositol, cats claw, magnesium, C, D, E, B6, B12, Folic Acid, lithium oratate, 5HTP, Gaba, omegas, flaxseed oil, and primrose oil. We do daily epsom salt baths for detox. We have gone gluten free and have given up caffeine.

 

Okay, thanks for the shoulders…

God Bless,

Laura

 

Laura,

I hear your pain. I work in a ER- it is probably NOT the best place to take him UNLESS you are wanting to have him placed in Psych facility. Positive bloodwork or not- they would likely not be impressed and have no idea what to do with that type of info. Either sick with Mycoplamsa or you're not- they won't go for some type of "chronic infection" causing problems such as you describe. Some of these symptoms your describe could be side effects from Minocycline- it can be very rough on the stomach, can cause vestibular syndrome symptoms etc. ER will likely label you and your kid crazy from the get go. That's just my experience with working with ER docs and nurses for 10+ years. ER's are there for acute problems- they are not equipped nor do they want to manage long term/chronic issues. They will turf that back to PCP.

 

You want to deal with MD's that know you and your child well. If your child is sick with physical symptoms, as well as, mental symptoms- those should be explored for possible treatment/diagnosis. Hallucinations are concerning- I'm not sure this if this is tied to PANDAS, Mycoplasma or not?? I think going to Pediatrician is your best bet. It sounds like he needs neurology and/or neuropsych consults if this is not a simple fix by stopping Minocycline etc.

 

Good luck and keep us posted on how he is doing- sounds heart breaking:( Prayers and hugs to you and your son.

[lmi1973]

Thanks for the responses. I really needed those. Sometimes I can't think rationally in the middle of things. I definitely think he needs more detoxing. That was my other concern, like if (big if) they actually decided to help and treat him and not haul us both off to the looney bin, that they wouldn't know the right doses of antibiotics (or even the right antibiotics) and if he had a big herx that they would think it was an allergic reaction and try something else, etc.

 

I will try getting ahold of his pediatrician and his specialist in MD. His pediatrician is new and overwhelmed, I was grateful he even took him on as a patient. He has no experience with lyme but said he would be willing to work with the LLMD and do whatever was recommended.

 

You're right on the supplements, it might be too much for him. Now that I think of it, milk thistle was recently added maybe that is causing some bad effects. The 5HTP and Inositol, he's been on for about a month, so he was okay for at least a couple weeks using them (just at bedtime), but, maybe it's just an overload. He does seem to take more pills than what he eats some days and as much as I harass him, I can't get him to drink more fluids. He does drink a few gatorades throughout the day, but that's the best I can get him to do.

 

Well, he seems happy for the moment (watching t.v.), going to get him into bath. Thanks for the input and prayers.

 

Sincerely,

Laura

[MichaelTampa]

What a tough situation! It seems most llmd's are not really equipped to handle detox situations. Can you find a local acupuncturist or other holistic style doc that could energy test supplements and help with detox. It is possible the pills you are giving are hurting, or not helping enough, or you need more or different ones. Before I started treatment I was on probably 80 supplements, they all energy tested good, and some I noticed made a huge difference for me. That number whittled down a lot once treatment started, but the point is there is a lot to explore regarding what can help there. Dr. Burrascano's guidelines on the ILADS website are a good start there, and you already have some of them in there, but energy testing what is good for your son is key. Hopefully it is just more/different detox needed, but it is also possible the antibiotics need reworking as well.

[momaine]

I have had to give my dd (and myself) a break from antibiotics for a day or two a few times as the herxing was just too bad and lasting too long. The break (even 24 hours of no meds) made a huge difference. She would begin to improve right off, which also helped me to understand that she was indeed herxing.

 

Unfortunately, my dd herxed significantly for 12 weeks straight. Those breaks we took let me feel confident it was a herx.

 

Also, one supplement my llmd suggested, which I've noticed a definite improvement from, is Glutathione. Both dd and I take 500mg once per day. I ran out at one point and over the course of the next few weeks, dd worsened. When I started it up again, she improved again in just a few days. I won't let that one run out again. Nothing else she's done has made such an obvious difference.

 

I am sorry to hear your son is struggling so much right now. I can say that SSRI's have helped my dd despite PANDAS/lyme/bartonella. We have had them prescribed by our famly doctor who is very open minded. (who just quit, I'd sad to say) I know that it complicates the big picture, but I felt I had to do something because she was struggling so much. She just wanted to die. We've used zoloft, way back before pandas diagnosis, and now she takes Celexa. 20mg helped. 40mg seemed to help a bit more. 60mg and she got worse. We are back at 40mg, and hoping that if she continues to improve, that we can go off it in the near future.

[Melody]

I so feel your pain! My 16 year old has been crying out for his mommy and I am helpless. His OCD and anxiety is off the chart and he is only comfortable when watching tv and that is rare. He is needing constant care and has said how he can't go on like this. He has been fighting for 3.5 years now and his homebound. We started Lyme treatment with dr c in February and saw some improvement but went back wards 4 weeks ago. It's hard to add supplements or anything becuase he ocd tells him that everything is dirty so it's a major battle just to get meds in him daily. I hate that others are going through this too!

[philamom]

Melody, I am so sorry to hear what your family is going through. Are you local to Dr. C (in Pa?)?

[hadmattress]

Hi there LauraMary, I have a theory as to why your child is regressing with his OCD.

I'm a 27 year-old woman who has been self-treating late-onset Asperger's for about four years. I have to tell you an anecdote in order for you to understand my theory. Several months ago I began having a severe exacerbation of OCD, depression, tics, ADHD, compromised fluency of speech, body dysmorphia (feeling like I didn't want to be in my own skin), dizziness, ataxia, psychosis and forgetfulness only to discover that the man I had been living with was a clinical psychopath and had been using the neurobehavioral toxicology research I imparted to him against me by putting large doses of iron supplements in the food he cooked me. I got out of that situation immediately, but not without having suffered a pretty big hit to my mental and physical health. I normally have those symptoms, but not to the degree I was experiencing after the poisoning.

I put myself to work figuring out how to eliminate the iron. Now, you should know that I have been using the Andy Cutler protocol to chelate mercury after removing my mercury dental amalgams. His protocol helped me recover drastically, but I hit a plateau. "Maybe a lot of the symptoms I have experienced are related to iron toxicity, considering the fortification of food using non-bioavailable iron and mercury's effect on iron metabolism." I researched, and sure enough, iron deposition in the basal ganglia is found in a lot of these disorders, including Tourette's and OCD.

I started researching iron chelators and learned that tetracycline antibiotics form insoluble complexes with iron, hence why you are told to take iron separately from them. Minocycline can be used after a stroke to chelate iron, which protects the brain from neuronal death from oxidative damage, inflammation.

http://www.ncbi.nlm.nih.gov/pubmed/21998050

So, I purchased minocycline in order to "clean up" my brain. Of course, iron feeds pathogens, which is how iron chelating antibiotics work-- they starve them out by sequestering the iron. Ferritin is not a good indicator of iron storage considering the body quarantines iron in the organs to protect itself during chronic illness and infection, so you can even appear to be anemic with iron overload (also copper deficiency which is sometimes (paradoxically) paired with copper toxicity due to biounavailable copper can cause iron overload). The body is refusing to give the iron to feed the pathogens, or cause further inflammation by releasing it into the bloodstream, but all this iron build-up in the organs is toxic.

Here is the problem, Andy Cutler says that you MUST take any chelator at a very low dose on the half-life. Taking it at a low dose allows the body to eliminate the heavy metals in a way that doesn't overload your bloodstream with toxins, causing all sorts of unwanted side effects. Your body's detoxification system simply cannot keep up with a large amount of toxic metals circulating for a few hours. Taking the chelator on the half-life prevents the metals from redistributing. Think of a chelator as little hands that pick up toxins: if there aren't a constant stream of hands to hold onto the toxins, the toxins get dropped causing more damage to tissues. The more hands (i.e. chelator), the more toxins are mobilized from tissues and thus a greater toxic burden when the drug is eliminated.

When I received my minocycline, I started taking very small doses (15mg every 8 hours approximately). Most of my symptoms were significantly lessened, but I ended up having a hypersensitivity reaction after a couple weeks, which is (I'm sure you know) not uncommon with minocycline, and so I had to stop taking it. I am going to order doxycycline and try again with that. At the moment I'm taking deferasirox, another iron chelator, which is working well (as evidenced by the fact that I'm writing this to begin with).

I'm thinking that if you're dosing your child with a large dose once a day, the antibiotic/iron complex doesn't have enough time in the bloodstream to be eliminated by the liver, so it just redistributes. I can tell you that redistribution of heavy metals is one of the most painful, grievous things one can experience and can actually cause permanent damage. The fact that healthcare practitioners aren't aware of this is frightening. You may want to try keeping his blood levels stable with a small dose on the half-life. I'm not a doctor, but something like 15-25mg every 8 hours (you have to set an alarm during the night) worked really well for me.

[Hopeny]

Hi I am so sorry you are going through this. Our current LLMD Dr. M who I really like told me that IV abx are not a be all end all. My DD had many psych and physical symptoms, including suicidal obsessions,.I think we have now reached the point that she is on abx longer than she had the undiagnosed Lyme infection. We are starting to work to wean her off abx, it's been about 18 months of treatment starting in January 2012. She has some residual visual issues that we are eventually going to tackle with vision therapy. Your son can get better though it seems impossible when you are going through something like this. Would you consider contacting Dr. H (I can PM you if you don't know who I mean) in upstate NY? He has a long wait list but you can see the PA in the meantime who discusses all cases with him and get on his regimine. He is supposed to be amazing, I love my current LLMD but I don't think he is taking new patients at the moment. Just a thought, I know Dr. H. has helped many difficult cases. FWIW I have NEVER heard an ILADS LLMD (we have seen 3) say they wouldn't treat with IV without a + Western Blot. It just doesn't make any sense at all. There is also a doctor I know of that uses IV pretty aggressively I think in MD (used to be DC but I may be reversing that) I can PM you his name too. If things are tanking maybe a new doc is in order. Hugs to you

 

Here are some of my ideas random order *(I am not a doctor, these are just my experiences, please consult a doctor) :

1)Higher dose Amoxicillin for us sent my DD over the edge, she became scary paranoid (told me she was afraid her clothes were going to hurt her etc) Personally I have been under-impressed with it generally. We pulled her off, gave 5 days of Doxy and then put her on a Biaxin/Augmentin (yes I know its the same stuff but somehow we didn't see the Amox reaction with this combo.) Then we did 60 days of plain Doxy. DD then went on Rifampin/Ztihromax, since last November for Bart. She is much, much, much, much better. Please discuss with your doctor one of the typically Lyme combos: Biaxin/augmentin, Rifampin/Zithromax, or Cefdinir/Zithromax. you need something to treat the bart, the preferred drug is Rifampin. I just share that my younger DD had a terrifying reaction to Bactrim, some have been ok with it but IMO better to use Rifampin and older and more stable abx.

2) We had a tremendous result using a compounded low dose Arteminisin from Hopkinton Compounding Pharmacy. Leg pain that had been present for 2 + years was gone in a week.

3) Folic acid - if your son has MTHR 677T this could cause issues. We were using way too much L-MTHF and it was causing symptoms, rages and skin picking. When we stopped those symptoms abated.

4) Cats Claw - I think its Buhner who likes this but many prefer Samento which is a refined version of Cats Claw and is missing a key ingredient (can't reacall which) which I know some say can cause problems

5) Burbur (nutramedix) - I have had a lot of success using this for Herxing symptoms, five drops in water every four hours really seem to work.

6) I think LLM is on a good track, maybe consider pulling all the supps and starting slowly 1 by 1. It may be the combinations making it worse though personally I would try a different abx combo as well.

7) Epsom salts have Manganese (a Lyme feeder) in them and other minerals. Maybe just try regular baths for a week. I also used Dead Sea Salts but they do have Manganese too. There are varied views on using Magnesium as well and maybe where you are with treatment that might be something to cut out.

Edited October 13, 2013 by Hopeny

[nicklemama]

My son was on an Aug/doxy combo and we dropped the doxy as summer approached due to its sun sensitivity side effects and put him on Augmentin/biaxin combo. He's doing really well right now. He has a PANS dx plus anaplasma and ehrlichia dx. He's 9 and weighs 72 lbs. 500mg augmentin 2x day and 250mg biaxin 2x a day.

 

You don't say the dosages of the supplements. My son does better with small doses of b12. Too much makes him irritable. Check your B12 dosage. If your son has MTHFR mutations, he should not take regular folic acid. He should take folinic acid.

 

my doc recommends using Burbur and sublingual glutathione to detox when herxing. You have to order Burbur from Nutrimedix. I give DS a 30 mg glutathione sublingual melt and 10 drops of Burbur in 4 oz of water every 30 min until herx over.

 

I'm a little surprised Dr K has him on amoxi since his go to abx is augmentin. My son is a Dr K patient and he's had IVIG in May 2011 and Nov 2012.

 

I'd also recommend stopping all supplements and reintroducing one at a time for a week before adding another.

[PIK]

I had OCD so bad that I had psychosis. Hallucinations of all types as well as delusions. I just went crazy one day. I had issues with OCD for years before that, but not to that extent. I also believe I have PANDAS as my ASO titers are still extremely high, as well as rheumatic fever and glomerularnephritis. I found relief from the psychiatric symptoms with clomipramine. Other SSRI's had been useful before the psychotic break, but nothing worked after. It took three years for the doctors to believe I was suffering from OCD, which I constantly reiterated to them. They were convinced I had schizophrenia and tortured me for three years with the wrong meds. No joke, a DAY OR TWO AFTER clomipramine was started, I was fine. Please consider this medicine if your son's OCD is really bad. It's the gold standard. I still have strep related issues, but the psych issues are gone for the most part. I'm now 35 years old now and had been dealing with OCD issues since at least age 14.

[PowPow]

Both my girls took clomipramine when they were (one still is) symptomatic and it definitely helped at least one of them alot.

[T_Anna]

Is clomipramine an ssri?

 

T.Anna

[Dedee]

How long has he been on this antibiotic? Usually you see herxing when you initially start the antibiotic, not after he has been on it a while. If problems start after he has been on it then it isn't working anymore. What more proof does your doctor need that the antibiotic isnt't working? There are many antibiotics that can work for this. Biaxin works very well. You need a different doctor. You need a supportive doctor. Also, your son needs an MRI. Neurologic lyme can be dangerous and cause dangerous encephalitis. No child should suffer this way. Do not allow any doctor to put you off. Your son deserves to be treated for this medical condition. Find a physician (LLMD) who will help you. Don't delay.

 

Dedee