hyper processing OCD. How should I proceed?

[pgoody]

As this is my first post on this forum I feel I should say hello to those who regularly visit this forum.

 

There are 2 things I want to outline in this post that might help you guide me down a good treatment path. The first is a simple description of my OCD and how I have addressed it and how it has evolved. The second is a question, based on my description about how I should proceed.

 

I have OCD with obsessions as my primary problem. Truthfully, anyone who has interacted with me in my day to day life aside from my parents and from my girlfriend whom I have told, would not know I have OCD as my issues are not tics or rituals, but more along the lines of obsessive thinking (harm OCD), perfectionism, constant mental agitation, constant logical processing, and at times slight delusional thinking when my processing thoughts overwhelm me. I have also experienced a 6 month period of almost daily panic attacks.

 

My OCD started for sure when I was at least 7 years old. I remember second grade is when my thoughts about harming people or myself began. At this time I visited a therapist once with my mother, who tried to help me stop the thoughts in their tracks. At the same time I began to suffer from depression, which is probably normal in combination with OCD and maybe also a result of having these thoughts. I'm sure that many of you know that when negative emotions (anything negative at all infact) cross your path that they get stuck, and trying to not think or have these feelings or thoughts are impossible. Well anyways, I believe I had this spell of OCD that sort of came and went (I believe for months at a time, at least). It might have been a sort of SAD seasonal related thing. I believe I was affected the most in the spring and fall, I am not entirely certain about that. Anyways, after second grade and up until 7th grade I was always a sort of emotionally sensitive kid (and beyond that age for some time) and this emotional hypersensitivity I believed was a part of that OCD. I believe it was a sort of manifestation of heightened fears caused by negative emotions and feelings.

 

In 7th grade I began with pharmeceutical treatment. I went through I believe Paxil, Buspar, Prozac until I landed at Zoloft, the SSRI that did well for me. From 7th grade and beyond I always had issues with social embarrassment (social phobia) and obsessive thoughts and at times depressive thoughts. From what I remember the Zoloft did a pretty good job at dealing with the depression and the ocd thoughts, and I was sort of left with social phobia at the time. One effect of the the Zoloft (200mg at some pt in highschool) was concentration. Then I was diagnosed with ADD (which I believe was just a result of the SSRI) and was given extended release ritalin, to help me focus. I also used caffeine for this effect. I then realized that I could probably just lower my Zoloft and decrease the stimulants which I did. I also was prescribed Clonazepam for my social phobia.

 

In college I did pretty well with my OCD except my sophomore year I took half of a caffeine pill which gave me terrible panic attacks which I had for the following 6 months until I got back on my Zoloft (I had been trying to get off of it completely, and I had been taking none for about a month).

 

Currently I am 24 and I have graduated from college but I am unemployed and have been for almost a year. I just came back from teaching english in China. During that year I once again reduced my Zoloft completely and went off my clonazepam completely, something that I continued to take at a low dose every day. During the time I had been completely off of my meds I sort of fell of the wagon so to speak. I began to become increasingly suspicious of people (more paranoid) and I had persistant thoughts and the inability to relax my mind and find peace. If I focused my mind on any task it exacerbated my symptoms and made me feel awful. There is a very physical burning in my head (not a headache) that seems to be the source of this anxiety. I have read about the possibility of neural inflammation being the root of OCD ( http://www.ncbi.nlm.nih.gov/pubmed/23547920) and it FEELS like my brain is inflamed. I have, since my lowest low finally gone back on zoloft. I have recently moved back up to 50mg of Zoloft a day and plan to hit 75mg to 100mg, whichever dose is theraputic enough for me.

 

I have been doing a lot of research during this time about alternative solutions for my OCD. I have been seeing a therapist and have seen a psychiatrist as well. My psychiatrist offered me a low dose of Risperdone, but I taking an antipsychotic is not exactly appealing to me, and I am borderline non compliant with treatment. My extreme symtpoms have sort of manifested themselves in this way. Suspicion, paranoid, oppositional, and rapid logical processing. I also feel very disconnected from my emotions and like life is just this task that I am pushing myself through However, I know I need treatment and have been moving in that direction and have been noticing improvement. I haven't restarted the clonzepam yet, since I was on very low doses daily for a long time to begin with. I believe I had been taking an eight of a tablet.

 

Having read a bunch of posts on this forum I got the idea that people may believe that there is a distinctions between "OCD" and PANDAS OCD. Is this the idea that some people have OCD as a result of an infection and other have more of a genetic root to their OCD, both of course resulting in OCD.

 

1) Is there a step by step process I should follow to determine any underlying infections such as strep or lyme (and others)? Are there any resources with compiled information for searching answers regarding unlderlying conditions? Is there anyway that I could get lyme tests and strep tests from my primary doctor without any obvious symptoms of disease other than OCD, and have them covered by insurance?

 

-Does anyone think I could go into my doc and say, "Hey doc, my brain feels like it's on fire" and convince him to do a battery of OCD related tests to check for a root cause?

 

2) What do you think about this hyper processing type OCD? It seems to be getting better with more Zoloft. It isn't something I ever experienced before going to China, it's a relatively new manifestation of my OCD. When I was young it was more emotional, and what I am experiencing now feels like the opposite of that. My mind feels very robotic and very unemotional. That might be the result of extreme stress I don't know.

 

 

[pgoody]

I have had OCD since I was 7 and now I am 24. I have been treated with SSRIs for quite some time. I am wondering if there is anyway that I could have had some virus or other infection that could be the underlying cause of all of this for this entire time? Is there a website or a place to go with compiled information regarding what to test for if one is suspicious of an underlying disease? I am not symptomatic for any disease aside from the fact that I have OCD and my brain feels like it's on fire because of my anxiety. Also I have had noticeable lymph bumps on the back of my throat for at least over a year (since I noticed them) and am wondering if any of this is a sign of some underlying infection. Any help would be great, Thanks!

[Chemar]

Hi and welcome

I have merged your 2 threads so the info is together for other members to reply.

[dcmom]

pgoody- what area of the country do you live? Maybe we could recommend a doctor you might start with.....

[MomWithOCDSon]

Pgoody -- Having gone down the "regular OCD" path ourselves for six years before finding PANDAS, I would encourage you to pursue and rule out every possible avenue. Personally, I'm not certain that science isn't going to eventually come to discover that there's no such thing as "regular OCD" versus "PANDAS OCD" -- that we're all a complex mix of nature and nurture, with our genetics combining with external factors to bring us to the place we are. So, if you're genetically predisposed, a trigger sets you off toward OCD, or TS, or a number of other possible behavior sets. Maybe that trigger is infection, maybe it is autoimmune, maybe it is some sort of physical or emotional trauma. But you won't know unless you pursue the possibilities.

 

As dcmom has suggested, seeing a doctor well-versed in PANDAS and/or the autoimmune issues that can give rise to OCD behaviors is key. There's a list of doctors many of us have seen on a pinned thread at the top of the forum. My guess is that while your current doctors know you and want the best for you, your pre-existing OCD diagnosis and history of that illness may lead them to be dismissive of your search for another underlying condition. At least that's what we found ourselves up against initially. It took us almost two years and a 3-inch binder full of research and observations to get our pre-existing psych to acknowledge that there was something behind our DS's condition that defied the context of "regular OCD." But even then, he didn't know how, nor was he comfortable, treating the autoimmune issues underlying the behavior set he'd been treating for more than 4 years at that point.

 

In our journey, I've learned to trust instinct. If you feel as though your brain is "on fire," your brain is probably on fire. (Incidentally, have you read Susannah Calhanan's book by that title, "Brain on Fire"? Hers was an extreme and fast-developing case, as opposed to the "slower simmer" it seems you and many others like my son have experienced, but her story might resonate with you.)

 

Good luck to you!

[pgoody]

pgoody- what area of the country do you live? Maybe we could recommend a doctor you might start with.....

 

dcmom,

 

I live in Minnesota. I will be moving to Minneapolis in about 2 weeks, but my primary doc is in Duluth, MN, which is where I am originally from. My primary doc is just an internal medicine doc. I had a psychiatrist in Duluth for about 5-6 years but never had a very good relationship with him. In fact I eventually started getting my prescriptions through my primary doc simply because he would listen and my treatment plan has never been anything he was uncomfortable prescribing (SSRI + benzo, which I think is fairly standard).

 

MomwithOCDson,

 

I definitely agree with what you say about the underlying causes of OCD. OCD is caused in varying individuals in different ways, but those various mechanisms of onset and dysfunction result in similar OCD symptoms and a disorder state that can be treated in a similar fashion. I am curious, having done a lot of investigation yourself, have you run across any definite answers in your own search for your sons underlying cause of OCD? Have you successfully intervened?

[MomWithOCDSon]

MomwithOCDson,

 

I definitely agree with what you say about the underlying causes of OCD. OCD is caused in varying individuals in different ways, but those various mechanisms of onset and dysfunction result in similar OCD symptoms and a disorder state that can be treated in a similar fashion. I am curious, having done a lot of investigation yourself, have you run across any definite answers in your own search for your sons underlying cause of OCD? Have you successfully intervened?

 

Yes, thank goodness! Because he was completely asymptomatic for strep in the classic sense (no fever, no sore throat), we had a hard time making a connection. Until we found out that we could test for strep titers in his blood. Subsequent information now tells us that this is far from a conclusive test for PANDAS, but the results (high titers) were enough in our case to convince his pediatrician to give us an abx trial. We wound up on abx for 2 years, plus ERP therapy, plus supplements, and we continue to maintain a low-dose SSRI (Zoloft), as well.

 

The results have been great, though his "return" was far from overnight. But he went from a quivering mass of anxiety, completely dysfunctional, unable to attend school, unable to play, work, shower, sleep, etc., to a fully-functional, high-achieving high school sophomore, killing it academically, hanging with friends, sleeping like a baby, and generally enjoying life again! He is not 100% OCD free, but he hasn't been since he was six, so I think that might be too much to hope for in his case. But it is subclinical now and doesn't interfere with his life in any substantive way.

 

For us it has been a long, slow, return to "near-'normal'" (but what's "normal," anyway?), and it's required a Kitchen Sink approach, as well -- essentially throwing everything we could at it! Now that we're in a good place, we think we know the "key" items that work for him, though someone else's "key items" will probably differ . . . .

 

Just don't give up! Keep at it, and you will find the way!

[sf_mom]

Being from Northern MN, do you remember any TIC bites while growing up? I know you must have had a ton of exposure. I think Brainerd, MN surpasses the North East for Lyme.

 

I am originally from MN, spent my summers camping, fishing, sailing with my family between Leach Lake and the Canadian border. I had tons of TIC exposure. We used to have a lot of fun just pulling the bloated TICS off our family dog. I have Lyme, Babesia, Bartonella, numerous viruses, heavy metals issue, vitamin/mineral deficiencies, etc. All of our children have gestational Lyme and both boys had OCD presentation but now resolved with treatment

 

If you have a known TIC bite or TIC bites I definitely start with some Lyme testing. How is your mother's health and does she have any odd diagnoses?

[pgoody]

Being from Northern MN, do you remember any TIC bites while growing up? I know you must have had a ton of exposure. I think Brainerd, MN surpasses the North East for Lyme.

 

I am originally from MN, spent my summers camping, fishing, sailing with my family between Leach Lake and the Canadian border. I had tons of TIC exposure. We used to have a lot of fun just pulling the bloated TICS off our family dog. I have Lyme, Babesia, Bartonella, numerous viruses, heavy metals issue, vitamin/mineral deficiencies, etc. All of our children have gestational Lyme and both boys had OCD presentation but now resolved with treatment

 

If you have a known TIC bite or TIC bites I definitely start with some Lyme testing. How is your mother's health and does she have any odd diagnoses?

 

Hehe, you definitely know how it is. I am an Eagle scout and have been camping quite a number of times. Also spent many summers in Wisconsin where there were literally LOADS of tics. Lyme is something I wouldn't be shy to say I might have. I know I have gotten bites from wood ticks but aren't deer ticks the ones that spread lyme's disease? Regardless there is a chance I have it. I am curious as the how it may present itself in way other than OCD symtpoms. Is Lyme or Strep something that passes with time? I think I read a post about PANDAS saying that people with that type of OCD have "flare ups" when they get strep. I can imagine OCD would get much worse at the period of time, but does it ever go away? Could a person like me be infected with lyme or strep without any other symptoms than OCD? I do have slight lymph inflammation on the back of my through which I only started to notice about 9 months ago when I thought I was having allergic reactions, I realized there is slight inflammation on the back of my throat and its always the same shape. as I have memorized the lumps.

 

How did you go about getting tested for those problems?

Edited May 17, 2013 by pgoody

[sf_mom]

Lyme is carried in many kinds of ticks, not just deer ticks. There might be other vectors like horse flys, spiders, etc.

 

Yes there are children with PANDAS/PANS that present only with OCD. They might have other symptoms present but they are minor comparatively and often get over looked. I know I over looked my son's joint pain as growing pains. Often the immune system is so disabled the individual has difficulties mounting a normal immune response. This is referred to as the Alternative Fever Response by some Dr.'s. For example, the child gets sick and responds with an increase in psychiatric symptoms only not a fever or runny nose. When the over all load is lowered (decrease in viruses, bacterias, environmental toxins) the immune system starts to respond more normally and will begin to mount fevers, etc. This was true for my kids.

 

I will add that chronic Lyme et all is not an easy fix. There are typically more issues than just infection. When the immune system has run a muck you are more likely to collect 'not erradicate' things like environment toxins (Bromine, Floride, Clorine derivatives, Mercury, Lead, Mold to name a few). Vitamin and mineral deficiencies are also an issue. My kids were low on zinc, iron, iodine, B's, magnesium, ALA, etc.

 

Here is a good symptom list. A tick can carry more than one bacteria and these infections are referred as TBI 'Tick Borne Illnesses'. The more common infections are Lyme, Bartonella, Babesia, Rocky Mountain Spotted Fever, Mycoplasma. With multiple tick bites growing up you may have had exposure to many TBI.

 

I hope I haven't overwhelmed you with too much information. Unfortunately I do not know of any good LLMDs in northern MN that can test you properly. You can always ask for a reference via ILADS.org

 

 

Lyme Disease

• Arthritis-like joint pain and swelling (often migrating or moving from joint to joint)
• "Brain fog" with poor concentration, focus, and/or attention
• Disrupted sleep cycles, resulting in poor quality sleep, too little sleep, difficulty staying asleep, or early awakening
• Back pain
• Light sensitivity and/or blurred vision, increased eye floaters
• Ear symptoms (hearing loss, ringing in the ears, or sensitivity to noise or certain frequencies)
• Chronic and/or severe fatigue with minimal stamina
• Facial paralysis (especially Bell's Palsy)
• Chronic pain and tender points throughout the muscles of the body
• Walking and balance problems
• Headaches
• Impaired muscle coordination
• Impaired reflexes
• Memory loss (especially short-term memory)
• Muscle weakness
• Nerve symptoms (numbness, tingling, burning, vibrating, or shooting)
• Night sweats, clamminess, unexplained fevers, flushing
• Unexplained weight change (loss or gain)
• Unexplained hair loss
• Swollen and/or tender glands
• Sore throat
• Testicular / pelvic pain
• Unexplained menstrual irregularities
• Unexplained breast pain / milk production
• Sexual dysfunction and loss of libido
• Upset stomach with nausea and possibly pain
• Changes in bowel function (constipation or diarrhea)
• Muscle twitching of the face or other muscles
• Increased motion sickness, vertigo, or poor balance
• Tremors
• Confusion, difficulty in thinking
• Difficulty concentrating / reading
• Disorientation (getting lost, going to the wrong places)
• Speech difficulties, vocalization problems, problems writing, word block
• Exaggerated symptoms or worse hangover from alcohol

Over 50% of those with chronic Lyme disease exhibit mental and emotional symptoms including:

• Behavioral disorders including impulsive acts of aggression and violence
• Extreme mood swings between depression and mania
• Chronic depression
• Dementia
• Eating disorders
• Hallucinations
• Mood swings
• Panic attacks
• Extreme fears or phobias
• Schizophrenia
• Personality disorders (radical change in someone's personality)
• Thoughts of suicide
• Irritability

A large percentage of individuals with Lyme infections also exhibit heart and vascular symptoms including:

• Shortness of breath with minimal exertion
• Gasping for air
• Irregular heart rhythms (occasional irregular beats or beating too fast known as tachycardia)
• Chest pains / soreness in the ribs
• Enlarged heart
• Palpitations
• Fainting sensations
• Non-productive cough
• History of heart murmur or valve prolapse

Two major clues that Lyme is the cause of the above symptoms are:

1. the progressive worsening over time of a multi-system pattern of symptoms, and
2. the tendency for these symptoms to wax and wane in a cyclical fashion. That is, every 3 to 6 weeks, it seems that the symptoms get worse for a few days, after which they resume the previous pattern.

Babesiosis

• • Chills
  • Fatigue and often excessive sleepiness
  • Night sweats often drenching and profuse
  • Severe muscle pains, especially the large muscles of the legs (quadriceps, hamstrings, buttocks, etc)
  • Neurological symptoms often described as "dizzy, tipsy, and spiciness," similar to a sensation of floating or of walking off the top of a mountain onto a cloud
  • Depression
  • Episodes of breathlessness, "air hunger" and/or cough
  • Decreased appetite and/or nausea, perhaps vomiting
  • Spleen and/or liver enlargement
  • Laboratory abnormalities that may include low white blood cell count, low platelet counts, mild elevation of liver enzymes, and elevated "sed rate"
  • Headaches (migraine-like, persistent, and especially involving the back of the head and upper neck areas)
  • Less common symptoms are joint pain (more common with Lyme and Bartonella), anxiety and/or panic attacks (more common with Bartonella), lymph gland swelling (more common with Bartonella and Lyme), non-specific "sick feeling" (also encountered with Bartonella and Lyme)
  • Dark urine
  • Enlarged lymph nodes
  • Significant memory changes
  • Struggle organizing
  • Profound psychiatric illnesses
  • Significant fatigue, daytime sleep urgency despite nighttime sleep
  • Waves of generalized itching
  • Balance problems with dizziness
  • Severe chest wall pains
  • Random stabbing pains
  • Weight loss
  • Sensitivity to light
  • Sleep in excess of 8 ½ hours per night
  • Sore throat with unproductive cough

Bartonellosis

• Fatigue (often with agitation, unlike Lyme disease which is more associated with exhaustion)
• Low grade fevers, especially morning and/or late afternoon, often associated with feelings of "coming down with the flu or a virus"
• Headaches, especially frontal (often confused with sinus) or top of head
• Eye symptoms are common and include blurred-vision episodes, red eyes, dry eyes, depth perception problems, retinal problems, and light sensitivity
• Ringling in the ears and sometimes hearing problems (decreased or even increased sensitivity known as hyperacusis)
• Sore throats that are recurring
• Swollen glands, especially neck and under arms
• Anxiety, panic, or worry attacks; others perceive as "very anxious"
• Agitation, irritability, rage, impulsivity, or aggression
• Episodes of confusion and disorientation that are usually transient (and very scary), often can be seizure-like in nature
• Poor sleep (especially difficulty falling asleep), poor quality sleep
• Joint pain and stiffness (often symmetrical, as opposed to Lyme which is often unsymmetrical and often migratory)
• Muscle pains, especially in the calves; may be twitching and cramping also
• Foot pain in the morning involving the heels or soles of the feet (sometimes diagnosed as plantar fasciitis)
• Nerve irritation symptoms that can be described as burning, vibrating, numb, shooting, tingling, and so forth
• Tremors and/or muscle twitching
• Heart palpitations and strange chest pains
• Episodes of breathlessness
• Strange rashes recurring on the body, red stretch marks, peculiar tender lumps and nodules along the sides of legs or arms, and spider veins
• Gut symptoms, especially acid reflux
• Shin bone pain and tenderness
• Fainting
• Bladder pain, irritation, infections
• Genital disorders
• Obesity and body swelling

The list of Borreliosis, Bartonellosis, and Babesiosis symptoms were borrowed from Joseph Burrascano, M.D. (Checklist for Lyme Disease 2008), Kenneth Singleton, M.D., M.P.H. (The Lyme Disease Solution 2008), and James Schaller, M.D. (Bartonella: Diagnosis and Treatment 2008 and The Diagnosis and Treatment of Babesia 2006)

http://www.drchuckcochran.com/articles/lyme-disease-and-the-coinfections/

[pgoody]

SF Mom, aside from what seems to be sort of "chronic fatigue" I don't present any sort of "sick-like" symptoms (fever, nausea etc). I will copy and paste from this list some of the things I do experience:

 

• Disrupted sleep cycles, resulting in poor quality sleep, too little sleep, difficulty staying asleep, or early awakening
• Back pain
• Light sensitivity
• Ear symptoms (ringing, not incredibly noticeable though, maybe just a result of my anxiety)
• Memory loss (more long term, as opposed to short term as this list suggests)
• Sexual dysfunction and loss of libido (actually my problem is the opposite, I have an overactive libido)
• Personality disorders (radical change in someone's personality) I feel as if my emotions have been almost 100 percent blunted and I am just pushing myself through life.

There are more, and most of my symptoms are along the lines of psychiatric issues, but those are the most "physical" problems I have. I also have always had asthma (only excersize enduced, otherwise unnoticeable), and I believe as I mentioned above have had chronically inflamed lymph in the back of my throat (not glaringly red, and not painful). Aside from that all signs point to be me having a fairly good immune system. I rarely get sick, even small colds and what not. Usually when I get sick it's because it's bigger stuff. Last sickness I had was in China when I had blood in my stool (sorry), went to a Chinese clinic where they told me I had a virus. One other thing I might mention is that I had a whole blood histamine test, with a result of 103ng/ml, which according to Pfieffer and Dr. Walsh is a rather high blood histamine level (most people are 40-50ng/ml, but it is meaningless to allopathic doctors. Oh and one other thing, while I was in China I had what I would might consider to be a sort of "jock itch" on my leg near the groin area. It was really itchy (not THAT bad, but noticeable from time to time) and I didn't really do anything about it. It might have very well been around for 4-5 months before it disapeared.

Edited May 17, 2013 by pgoody

[sf_mom]

My son also had blood in his stool at one point. We did comprehensive stool analysis and he was positive for a unknown parasite, treated for it and it resolved.

 

You should really be evaluated for Lyme et al. Also mycoplasma, chlamydia pneumonia due to asthma symptoms. And of course strep and EBV.

 

I definitely think you will find some type of chronic infection. I had back pain as well and all resolved with treatment.