Need Docs for Adult Patients

[Megs_Mom]

Hi all - I have an odd connection, who is now sending me a few parents of adult children (20-30 years old) to ask for advice - usually more PANDAS than Lyme related - but I do suggest they check Lyme, of course. I refer them all here, but they are often of a generation that is not as comfortable with a on-line support forum. I give them all the information I can, including the turkish study (PANDAS), but I am not sure where to refer them for any kind of treatment options. This is driving me crazy, so I am here to beg for advice. ANY doctors in the US that will evaluate and treat an adult for "infectious triggered OCD"? These are often very very severe patients. I am thinking maybe LLMD's? I just saw PacificMama's post on this - so that is helpful. Will these docs help with other illnesses?

 

I am feeling frazzled this am, and would appreciate any and all ideas. Even reference papers that I can give them to help their local docs. I have pretty much everything that pertains to kids....

 

As an example, this am, I have a mom of a 23 years old - overnight onset of OCD at age 5 after hospitalization for osteomyelistis of the femur, treated with IV antibiotics. Short time later, over 2 days, different kid. Is now very severe as an adult, has gone through inpatient OCD treatment a number of times, worsens dramatically with respiratory illness.

 

Also, I am wondering, can you expect dramatic improvement after so long, or would this be a situation where it would take a long time and a variety of interventions.

 

My heart breaks for these children that have suffered so long and now are adults.

[matis_mom]

Hi all - I have an odd connection, who is now sending me a few parents of adult children (20-30 years old) to ask for advice - usually more PANDAS than Lyme related - but I do suggest they check Lyme, of course. I refer them all here, but they are often of a generation that is not as comfortable with a on-line support forum. I give them all the information I can, including the turkish study (PANDAS), but I am not sure where to refer them for any kind of treatment options. This is driving me crazy, so I am here to beg for advice. ANY doctors in the US that will evaluate and treat an adult for "infectious triggered OCD"? These are often very very severe patients. I am thinking maybe LLMD's? I just saw PacificMama's post on this - so that is helpful. Will these docs help with other illnesses?

 

I am feeling frazzled this am, and would appreciate any and all ideas. Even reference papers that I can give them to help their local docs. I have pretty much everything that pertains to kids....

 

As an example, this am, I have a mom of a 23 years old - overnight onset of OCD at age 5 after hospitalization for osteomyelistis of the femur, treated with IV antibiotics. Short time later, over 2 days, different kid. Is now very severe as an adult, has gone through inpatient OCD treatment a number of times, worsens dramatically with respiratory illness.

 

Also, I am wondering, can you expect dramatic improvement after so long, or would this be a situation where it would take a long time and a variety of interventions.

 

My heart breaks for these children that have suffered so long and now are adults.

This is to me a strong reality check: If we don't get our kids treated thoroughly now, who knows what the future will bring. Yes, some kids grow out of PANDAS (supposedly?), but I'm not taking any chances!

 

I would say these adults should see improvement when treated correctly, and I suspect an LLMD would be the first step, maybe with a neurologist on board too. And maybe psychiatric drugs would be a helpful temporary measure until they get the infection under control, but I think it would be best to run it all through an LLMD/integrative doctor who can see the person as a whole and make sure all the treatments are working together.

 

And Cognitive Behavioral Therapy is very helpful too. It's not going to make the OCD go away completely, but it helps the person lead a more normal life. You'll still have the feelings come up on you I guess (fears, anxiety), but you won't always act upon them and let them rule your life. There are some very good self-help books out there. I don't have them handy but PM me if you want the title/author.

[MichaelTampa]

I don't have any ideas other than an LLMD. There are some psychiatrists/psychologists that recognize it is infection related, but still, they're not going to have anywhere close to the skills to fix it up. In theory, that would be what "Infectious Disease" doctors are for, it's just that if they're not an LLMD, a huge possibility for treatment is going to be ignored. Some LLMD's do list themselves, by the way, as "Infectious Disease" doctors on their cards and so on--mine does, even though he is a member of ILADS.

 

I would recommend in general suggesting these people get an ILADS member who is at least somewhat versed in other infectious diseases. I'm not sure if all of them are or not. If they don't get anywhere with a lyme/ILADS lookup, perhaps a "regular" infectious disease doc would then be the place to try. ILADS website has contact information to get local referrals.

[PacificMama]

I'm understanding that you are looking for a psych? Not an MD?

In any event, you can contact ILADS and ask for referals of docs who do neuropsych evaluations. In fact, the current president of ILADS in a neuropsychologist. But also, LLMD's are very familiar with neuropsych manifestations of lyme disease, as it is just another symptom to them. So if these people have some sort of infectious pathogen causing their symptoms, an LLMD is a good person to see for eval and testing. It's quite thorough.

[tpotter]

I have a 17 year old, and that's not far off. We just figured it all out when he was 15, and are still trying to get appropriate tx. We are dealing with OCD, Bipolar look-alike, Asperger's, and suicidal ideation. 17 is not far from 23. Luckily, we are still in the pediatric range, but I suspect that my dad may have the whole thing, too, and he agrees.

 

Here's where I would start:

 

1) contact Dr. C. Ask if her test is standardized for this.

 

2) Contact the NIMH. I realize that they are still in the experimental stages, but if pushed, they might be able to give you some ideas.

 

3) This is #1, and IMMUNOLOGICAL/AUTOIMMUNE/INFECTIOUS DISEASE process, and honestly, I would find a very top notch..immunologist (not allergy/immunology, but immunologist. Don't mention the word PANDAS, but rather mention that they have neuropsch symptoms following an infection (and tell them all the neuropsych symptoms.) I would even think that if you found someone who works with HIV, they are going to know about immune deficiency. Since few infectious disease drs. seem to know about immunology, and the underlying process really appears to be autoimmune, I think the immunology connection is the best bet

 

4) Alternative...Dr. B. may be able to help. He understands an awful lot about this disorder, and he is willing to learn more. He told us to check out Lyme, and we are. My husband has already tested positive, and all of us are being seen by an LLMD next week. Dr. B. is not only pediatric...he checked out my husband, and found the Lyme, and he checked out me, and found MycoP, which gave a very good reason for my uncontrolled asthma. I do think, though, that if you can get in with a very good immunologist who understands the neuropsych connection of all of this, you might be better off, because as the Turkish study shows (and I can attest to), PEX as a start does work really, really well, and may be what is needed to start the process.

 

But, I would really start with a really good immunologist (after checking with Dr. C.)

 

PM me if you'd like, and we can discuss this further.

 

Good luck, and let me know how it goes.

 

Oops...I'm editing this, because I forgot to mention to also have an LLMD, because they really need to make sure there's no Lyme connection.

Edited October 21, 2010 by tpotter

[Megs_Mom]

Thank you so much to everyone that responded here or on PM - it was VERY helpful.

[NancyD]

I would consider seeing a DAN doctor. Many are family physicians and are good at finding underlying reasons for psychiatric symptoms.

 

Hi all - I have an odd connection, who is now sending me a few parents of adult children (20-30 years old) to ask for advice - usually more PANDAS than Lyme related - but I do suggest they check Lyme, of course. I refer them all here, but they are often of a generation that is not as comfortable with a on-line support forum. I give them all the information I can, including the turkish study (PANDAS), but I am not sure where to refer them for any kind of treatment options. This is driving me crazy, so I am here to beg for advice. ANY doctors in the US that will evaluate and treat an adult for "infectious triggered OCD"? These are often very very severe patients. I am thinking maybe LLMD's? I just saw PacificMama's post on this - so that is helpful. Will these docs help with other illnesses?

 

I am feeling frazzled this am, and would appreciate any and all ideas. Even reference papers that I can give them to help their local docs. I have pretty much everything that pertains to kids....

 

As an example, this am, I have a mom of a 23 years old - overnight onset of OCD at age 5 after hospitalization for osteomyelistis of the femur, treated with IV antibiotics. Short time later, over 2 days, different kid. Is now very severe as an adult, has gone through inpatient OCD treatment a number of times, worsens dramatically with respiratory illness.

 

Also, I am wondering, can you expect dramatic improvement after so long, or would this be a situation where it would take a long time and a variety of interventions.

 

My heart breaks for these children that have suffered so long and now are adults.