Severe OCD

[CallieAndToby]

Hello, I have had M.E. for about 10 years but only developed ocd within the past 3 years. I became bedridden in 09 which went on for about a year, and in that time had constant adrenaline and tachycardia which was eventually diagnosed with hyperadregenic POTS. A couple years later I woke up one day with horrible ocd; I can't control or combat the thoughts at all and now I can't rest, relax, or sleep because of them so I've been declining rapidly.

I see a very respected psychiatrist and we've tried all the FDA approved drugs, we have also tried anti-psychotics, tri-cyclics, and I am currently taking klonopin and xanax so I am drugged all the time. I have been doing CBT with a great psychologist for 4 years now. None of this has helped at all, none.

I THINK the CFS is causing it b/c nothing else it helping. But that is a general statement obviously..................... My question is: what could be causing this ocd (physiologically speaking)? Has anybody dealt with it to this severity and what helped? Any suggestions are welcome, thank-you for your time, I just merely want to be free of this torture.

 

[Crux]

Hi Callie and Toby;

My most salient OCD is trichotillomania, hair pulling. This began in early childhood, along with thumb sucking.
I believe it does have a neurological origin, because when I need more B12, Trich. is one of the symptoms that returns. Other neuro symptoms return as well, such as neuropathy.

I haven't been able to reason or behave myself out of it. I just consider it to be another physiological/neurological manifestation of low B12.

I started with Methylcobalamin, 5mg., and increased over time. ( individual needs vary) Many people start with a much lower dosage.

I take a low dose B complex, and add extra niacinamide, a non-flushing form of niacin. I take the B complex in the morning, and the niacinamide in the evening. ( I usually take 250 mgs. of niacinamide).

I didn't increase Folate for a time because it was very high in the blood serum, and was overstimulating at first. I believe the B12 was needed to help utilize the folate.

Some of the calming minerals, such as: magnesium, potassium, and zinc have been helpful. Again, individual results vary. ( For instance, I take alot of potassium, 2-3 gms., divided doses, daily. (good for tics and twitches) I've been decreasing zinc to 7-10 mgs. at night. ( good for anxiety and sleep).

Since the B12, etc. has greatly improved my CFS, I believe it to be another related neurological condition, certainly.

 

[CallieAndToby]

Thank-you for the well thought out response. Appreciated.

 

[taniaaust1]

I have a vague recollection of reading (which could be wrong as it is very vague) that OCD developed in quite of few of one of the ME outbreaks.

 

[caledonia]

As crux is saying, working on methylation may be the ultimate solution for both OCD and ME/CFS. I ran across something really interesting in one of Yasko's videos, which reminded me of my dad who had developed really bad OCD. Yasko says lead + lack of B12 = OCD. I don't think she was implying this was true in all cases, but was one mechanism she had discovered. My dad worked in the printing industry and had massive lead exposure during his working years. He also likely had some B12 SNPs that limit B12 utilization, as I have mutations for 5 out the 6 B12 SNPs.

I suggest checking for heavy metals and also check your methylation SNPs. If you have the CBS SNP like I do, you may not be able to tolerate much B12 (or any B12 like in my case) until you reduce your sulfur and ammonia stores. This is called the CBS drain.

Also, what is the timing of these symptoms and your usage of any psych drugs, such as SSRIs and SNRIs? I developed OCD and restlessness/agitation/anxiety, racing pounding heartbeats, insomnia and a bunch of other horrible stuff after tapering off an SSRI. The wierd thing was that these symptoms didn't start until six months after being off, so nobody made the connection.

This is not your original condition reoccuring, this is a result of the drug. So if you've had a lot of worsening recently this may be the cause.

For some quick relief you can try adding calming things like magnesium, theanine/GABA and taurine. They won't interfere with the two drugs you're on and they're not addicting.

You may also want to get an adrenal saliva test. The withdrawal made my adrenals go from almost zero to extremely high. Relora was helpful in getting them to come back down. Seriphos would also work.

If you decide to try B12, first off it should be sublingual so it can actually absorb. You should also have some slow release niacinamide on hand (the non-flushing kind). If the B12 makes you hyper, the niacin will soak up methyl groups and dampen the reaction back down.

As with any new supplements and medicines - start low and go slow. Start with a dose which is much smaller than a normal person's dose. Gradually increase as tolerated. Start one new thing at time, so you know what is doing what. Take notes in a journal as to what you are trying and any symptoms good or bad.

 

[CallieAndToby]

I have a vague recollection of reading (which could be wrong as it is very vague) that OCD developed in quite of few of one of the ME outbreaks.

Wow! Very interesting. I'd like to know more about this, if you can remember anything.


caledonia Well for me I became bedridden in 09 after getting mono in 08. At this time I had developed severe dysautonomia and was running on adrenaline all the time, even displaying tachycardia through out my entire sleep period. I was not on any ssri's or snri's and hadn't been in probably 10 years. I was only taking medications for sleep. I was bedridden for 09 and started to be able to get out of bed in 10, the ocd started suddenly out of the blue. The reason I was put on the ssri's was to try and help it.

My B12 is actually too high and DR. R told me to lay off of the supplement. Weirdly, my vitamin D is too low even though I live in Florida and supplement 6,000 iu per day. I will certainly look into and appreciate all your suggestions.

I also take magnesium every night and use sodium in water daily, st. john's wart, lysine, coQ10, vit D, folic acid, vit. C, and 4,000 mg of fish oils. None of this has ever helped.

What I have noticed is, as my CFS gets worse which is every month, my ocd gets worse also, but it's always the CFS first.



I've actually read that cytokines can cause major psychiatric problems including ocd. As evidenced by people who have tried ampligen and immunovir, their mild psychiatric problems became severe. Immunovir is making my friend manic. Anybody have thoughts on the role of cytokines and these issues?

 

[caledonia]

B12 too high - serum B12 doesn't tell you how much B12 is actually being utilized. If it's high, it can indicate that there's a lot floating around in the blood, but you can actually be deficient.

Folic acid - folic acid is a synthetic vitamin which needs to be converted in the body to be utilized. About 30-40% of the population has a mutation in the MTHFR gene which creates a partial block in your ability to convert the folic acid into methylfolate. Methylfolate is the form you body can actually use, so that's what you should supplement with, not "folic acid". In addition, folic acid will deplete the body of methylfolate.

Also if you're deficient in B12, then whatever folate you have won't be able to be used to make methyl groups, so that will put the kibosh on the functioning of the rest of the methylation cycle, which has wide ranging negative health implications.

 

[CallieAndToby]

Great information thanks, I will certainly discuss it with the doctor!! I'm just repeating what my CFS doctor said about the B12, she told me to stop taking what I was taking. The other supplements are recommended by her.

Appreciate the responses, will print them out and look them over when I am better rested.



What I've found about cytokines:
“Cytokines, like the interferon production stimulated by Ampligen, act directly in the brain to cause symptoms of sick behavior. Apparently the body’s plan is to get us to withdraw via feelings of anxiety and depression until the infection is dealt with. Unfortunately, for those of us with chronic infections, the anxiety and depression persist. When we take Ampligen, TF or other immune boosters/modulators, we go through a fresh round of intensified psychological correlates of the immune activation.”
AND
Cytokines “act in the brain to induce common symptoms of sickness, such as loss of appetite, sleepiness, withdrawal from normal social activities, fever, aching joints and fatigue…The fact that cytokines act in the brain to induce physiological adaptations that promote survival has led to the hypothesis that inappropriate, prolonged activation of the innate immune system may be involved in a number of pathological disturbances in the brain, ranging from Alzheimer’s disease to stroke…Indeed, the newest findings of cytokine actions in the brain offer some of the first clues about the pathophysiology of certain mental health disorders, including depression.”

 

[vamah]

This is not about OCD specifically but, as OCD is an anxiety disorder, I think it is of interest:


http://www.thehumansideoflyme.net/viewarticle.php?aid=56

 

[Wifi123]

Hello, I have had M.E. for about 10 years but only developed ocd.....

I THINK the CFS is causing it b/c nothing else it helping. But that is a general statement obviously..................... My question is: what could be causing this ocd (physiologically speaking)? Has anybody dealt with it to this severity and what helped? Any suggestions are welcome, thank-you for your time, I just merely want to be free of this torture.

Hi C & T,

This is a testimony that is totally different from anything that anyone else has heard. I share this with you, because of how we overcome and conquered OCD. It wasn't simple, and I am sorry if our testimony is long, and without any form of a quick-fix, because there isn't any.

If you don't like what I have posted, then I will be glad to delete it.


Testimony of OCD

A number of friends and including myself have shared our different levels of OCD, and we all complained about having racing thoughts through our brains. We all agreed that our thoughts were completely against our personality, and we hated the thoughts being there, which continued to pop up for no apparent reason. They would just appear from nowhere.

We felt fearful or shameful about thinking such things, when it isn’t our normal thinking in the first place. We all agreed that our OCD wasn’t a mental disorder or disease, but believed that something had taken over our mind forming a form of bondage, which we decided that it needed to be uprooted.

At times we felt we were suffering OCD, because of our torment from our symptoms, but we began to see that if we allowed our bondage to take control of us, we would begin to “fear”, and then for no apparent reason “shame” would come into our emotional feelings and thoughts, which then put us further into bondage.

We all thought basically the same, but we still experienced thoughts being “pushed” through our minds that we wouldn’t normally think of, which was completely against our true nature and we did experience this strong pulling of our thoughts in different directions. Some heard voices inside their minds, and we all sensed that there was something wrong and isn't right, and definitely felt it wasn’t an infection, or a mental problem.

We described it as though there was a magnet in your brain that was pulling our thoughts in a certain direction, despite the fact that we hated those thoughts. We felt as though we were sharing our mind with another person, who wasn’t there, and we would argue with them and totally disagree with what we seemed to be hearing. Now that wasn’t mental!

We began to realise that these “voices” or “compulsive thoughts” were not a chemical imbalance, but we began to see it in a form of a spiritual and physical context that seem to have bound our mind that was something totally different to the normal run-of-the-mill of things. Most of us would try and explain our assumptions to our doctors, but it couldn’t be explained, as the frame of mind of medical logic doesn’t marry up with human logic in keeping in touch with reality.

My friends suffered from constant bondage to OCD, and there was no way that they could be convinced that the possibility of some form of spiritual and physical experience was behind their thoughts. They would experience strange compulsive thoughts that cause fear to sweep over them, and it felt as though it was something in their past life had happened before their OCD began. At times their torment couldn’t speak about, as it was one of the worse feelings they could experience.

Some said that they seem to have a continual planted thought in their mind of “what if” questions, and they these thoughts made them feel absolutely hopeless and convinced that they've lost all hope. They also felt all alone, as if they were the only person in the world that such a thing was happening to them. The truth is that when there is a spiritual and physical cause, it’s not until we become sick, having time on our hands, we begin to think of many things that we had did in our past, and those things that come to mind made us feel as though those things were unpardonable, which made us feel fearful and shameful.

We all continually asked ourselves the same question all the time:

“Why can't I stop thinking like this?”

“Where are these thoughts coming from?”

“What has happened to my mind?”

“Can't I think for myself for a change?”

And when we discussed these things, we all began to see that there was some “shameful identity” behind the scenes, which stemmed from something shameful we all did in our past, and that is why we became “fearful” and then “shameful”.

When we discussed it further we began to see the numerous embarrassing and/or shameful things began to come to mind from our past, as we began to think about those things that we had done in our past, we realised that we felt some guilt of what we had did, and then we began to feel guilty. The more we thought about it, our “guilt” turned into “shame”. Through our feeling of guilt we began to see our problem, and when we felt “shame” we realised that there was a problem.

As we felt “shame” we discovered that we would begin to beat ourselves up mentally, and by doing this we discovered that we opened our mind up to further torment, and that was when we considered that we were suffering from a spiritual and physical factor and it wasn’t an infection or a mental disorder that was causing our OCD.

As we talked about it, we began to think about the many people that we had offended, abused, and hurt in our past, and at the same time we realised that there were also many people who offended, abused, and hurt us. We realised that our guilt was due to our unforgiveness of those people who had done terrible things to us, and we need to forgive them, but it was hard to ask for forgiveness from those people who needed to forgive us. These things were spiritual and physical and were part-and-parcel of our OCD, and these things opened the door within our soul to further torment. We also discovered that our “shame” was in fact from failing to forgive ourselves.

We didn’t realise until then that most of our problems that we were struggling with could have been caused by our failing of the “universal law of our planet” of being kind, good, and gentle with other people and ourselves. These personal things that most people overlook, is that we “forgive” other people, and we “forgive” ourselves.

It had taken us years to realise the cause of events of our past, does attract torment. I found in my own struggle against OCD that the more I thought about the shameful things I did in my past, the stronger and worse my compulsive thinking came upon me.

We all discovered that more we talked about our past and problems, the OCD began to lift, and even if some infection, bacteria, or chemical, may have brought us to this level of understanding, but it was a root from our past that kept on coming up in our thoughts, causing us to “beat yourselves up” mentally. We discovered that once we began to deal with those things from our past (spiritual and physical), those obsessive thoughts began to disappear, and we did it without drugs!

After many talks about our problem we believed that there were other things we had to address. We had to deal with our strongholds, and that was those nasty things we did in our lives. We discovered that “guilt” and “shame”, was the essence of our OCD.

Some of us became petrified of our absurd thoughts, and when we found that fear was gripping us and was very hard to overcome, then we began to work harder on our personality and those past problems that were making our OCD worse, even though we didn’t believe it or would accept it in the earlier part of our OCD.

It all began when we came across an article that led us to that place. We had to become a cruel taskmaster to ourselves, but because we were many, we were able to talk about those things in confidence with each other.

We discovered that the freedom from OCD for a few of our friends was due to emotional, physical, and sexual abuse.

We did find that the power of love and sound mind, helped us through our journey, without drugs, and brought us to our freedom from OCD.

 

[CallieAndToby]

Wifi123 Interesting. When you talk about "us", was this a group therapy you did?

Yes I do deal with a lot of guilt and shame and hurt. A lot of it started when I became a christian and was given all these rules to live by and constantly reminded of my sins. I do have a friend I can confide in and I don't feel guilty about my actions presently, I feel like I can be myself, which is good.



I'm going to print out all responses, look them over, and most certainly discuss possibilities with my physician.

 

[CallieAndToby]

Methylfolate is the form you body can actually use

Do you recommend any specific brands?

 

[Wifi123]

Wifi123 Interesting. When you talk about "us", was this a group therapy you did?

Yes I do deal with a lot of guilt and shame and hurt. A lot of it started when I became a christian and was given all these rules to live by and constantly reminded of my sins. I do have a friend I can confide in and I don't feel guilty about my actions presently, I feel like I can be myself, which is good.



I'm going to print out all responses, look them over, and most certainly discuss possibilities with my physician.

Hi Callie, that is a shame that once you became a believer that you felt guilt and shame. I am a believer, and I can assure you that most of those rules in regards to sin isn't thrown at anyone to make them feel this way, it's sad when over-zealous and misinformed people misuse the real Gospel. Our Lord didn't come to make a person feel guility or shameful, but to heal their broken-heart and to set them free.

Yes, it all comes about by sharing and discusing things with each other. To have a friend whom you can confide in is very special. The very act of confession, forgiveness, and love will release us from captivity and bondange. Are you still involved in a church?

Hurt, offence, and abuse can only be dealt with speaking words, by getting it off our chest. Our heart has so many layers of these things deeply imbeded within our heart and brain. I found in my life when I began to confess my sins, and not from guilt and shame, but because I wanted to, and asked our Lord for forgiveness, I began to heal. And then when I began to forgive those people who had offenced, hurt, and abused me, I then began to heal even more and found more freedom. I've always found that through confession, and repentance, forgiveness and love became much more easier to face.

I pray that you will see the truth of what I posted above, and you are able to overcome and conquer your feelings, and be set free.

Blessings.

 

[Wifi123]

Do you recommend any specific brands?

Be aware of the side effects:
http://mthfr.net/methylfolate-side-effects/2012/03/01/

 

[caledonia]

Do you recommend any specific brands?

Folapro. As always, start low and go slow, to minimize any adverse effects. Note that the adverse effects are not from the Folapro per se, but from starting up methylation and detox.

 

[Marco]

Hi Callie and Toby

I can sympathise completely. I've been diagnosed with a form of OCD, depression, IBS and ME/CFS which all started simultaneously. I also have severe anxiety but have always been somewhat prone to anxiety even prior to ME/CFS.

I have a hypothesis that all of these 'labels' directly stem from an ongoing neuroinflammatory state caused by an imbalance between the excitatory neurotransmitter glutamate and inhibitory GABA.

I'm the 'wired and tired' type and while there may be different types of ME/CFS (as per ADHD) I lean towards and excess of extracellular glutamate as the key problem.

What to do?

There are some common sense things you could try. Reducing dietary glutamate might help. Not just the obvious things like additives in processed foods but in less obvious food sources such as heavy meats and cooked tomatoes.

If you don't already practice meditation you might consider something like mindfulness meditation as continued meditation has apparently been shown to increase GABA levels.

The supplements suggested by crux and Caledonia may also help as, in addition to methylation issues they also help reduce the neurotoxic effects to excess glutamate.

One supplement I have found helps is n-acetylcysteine. NAC is a strong antioxidant, glutathione precursor and GABA agonist with some evidence for efficacy in the treatment of trichotillomania. I take a soluble over the counter version sold as the cold remedy 'Mucomyst'. This helps me with severe heat intolerance and can prevent PEM. I can't say if it helps with anxiety or the OCD symptoms as at the moment I only take it occasionally and its not long lasting. I believe Jarrow do a sustained release version.

Re meds I'd take a cautious approach in attempting to treat high glutamate or raise GABA. Kindling is a neuroinflammatory process that can happen with benzodiazepine use and alcohol abuse. Both benzos and alcohol raise GABA (temporarily) but during withdrawal of the drug there is a resulting glutamate 'spike' and after repeated episodes of use and withdrawal a self-perpetuating neuroinflammation develops that needs less and less stimulus to trigger it. Hence the problems of tapering off from benzos or alcohol.

One compound that interests me is Baclofen, used originally to treat muscle spasticity and recently licenced here in France to treat alcoholism via reducing the cravings and unpleasant symptoms of withdrawal. You might think that chronic alcohol abuse has little to do with ME/CFS but I feel it might actually be quite a useful model. Many alcoholics describe lifelong anxiety and this may be why they start drinking initially. Over time the constant cycle of taking a GABAergic drug and subsequent withdrawal causes kindling, neuroinflammation and excitotoxicity and oxidative stress. I suspect a similar process underlies what we call ME/CFS but without the need for alcohol to act as the catalyst.

Notably under treatment with high dose Baclofen, patients report not only no desire to drink but also that their lifelong anxiety has disappeared.

Tolerance and withdrawal issues don't appear to be as much a problem with Baclofen as with benzos perhaps because it is a GABA -B receptor agonist rather than GABA – A.

For the reasons discussed above, I would strongly caution against any unsupervised attempts to modulate glutamate or GABA (Google Baclofen pump failure in Stiff Person Syndrome for a further caution) but it may be something you could discuss with your doctor?

Here are some links to articles discussing OCD and glutamate :

A light read :

http://www.ocfoundation.org/glutamate.aspx

not so light :

http://www.google.co.uk/url?sa=t&rc...vYD4Ag&usg=AFQjCNFsEouFqTFpq-anGY30q0McgDfCew


Merry Xmas and I hope this helps a little.

 

[Lala]

Bartonella and probably babesia can cause OCD as well.

 

[CallieAndToby]

There's a disorder called PANDAS that causes sudden onset of OCD. It happens after somebody gets strep, which I did in 08. I am trying to find somebody locally who can test for it, but have been unsuccessful so far. Thank-you to the user who informed me about this disorder, it is treatable.

 

[CallieAndToby]

I was diagnosed with late onset PANDAS syndrome. Based on extensive evaluation of my history and lots of labs. It is obvious with my symptoms this probably was triggered when I was 15 or so by strep and possibly other viruses (that I am now positive for - coxsackie in particular). It can happen in teenagers and young adults. Very high AntiDNAse-B and other clues with IgG's.

Other major symptoms I present:
sudden onset of GAD
sudden onset of anorexia nervosa and other eating disorders (at age 18, previously no issues with this)
movement disorder
startle disease (hyperekplexia)
sudden onset of pains only in my shin area - sharp burning (at age 15, happens with strep) / I do not meet criteria for FM .

it really doesn't account for how terrible my fatigue is or my insomnia, but those are things we'll look into down the road
When ocd comes on suddenly and severely, it is important to look into all possible causes/ physiological as well as psychological; none of the ssri's, nor snri's, nor anafranil have helped at all.

another user told me about this disorder and a good doctor to see, thanks
though I don't know how much improvement is seen and what the outcome is for adults with PANS

 

[perchance dreamer]

I just have a second, but I did want to mention biofeedback for OCD. There is a specific abnormally high brainwave pattern associated with this condition and hypervigilance, and you can get EEG training to bring this pattern down to a more normal level.