Rheumatologist visit and confused

[PIK]

I had posted on here with some questions. I am now 35 years old and I STRONGLY suspect (i.e. I'm certain) that I had PANDAS as an adolescent as well as rheumatic fever and glomerularnephritis. The whole gamut of strep related illnesses. There was rapid onset (overnight) OCD at age 14 and I clearly remember having strep throat at the time. I had some kind of kidney issues at 28,as well as joint issues and low-grade fever, and a doctor in Europe first brought up the issue of rheumatic fever, which got the ball rolling. I was prescribed at the time a one-month course of penciillin becasuse of elevated ASO titres at like in the mid-500's.. Instead of twice per day, I took it three times per day because I could not deal with being ill any longer. At three weeks, one night, I got up and started peeing and peeing, and the fever just dissipated. This is what leads me to believe I had glomerularnephritis. The next morning, I woke up and I was nuts. The caca literally hit the fan. I was hospitalized twice and the diagnosis ranged from bipolar to schizophrenia. Over the next three years, I was treated with EVERY antipsychotic, and it was clear that they were not dealing with schizophrenia, though they persisted because they did not want to listen to me. Finally, the psych tried Anafranil, which cleared up ALL psychiatric symptoms within 48 hours. Fast forward a few years. At 34 I started seeing a rheumatologist because of severe fatigue, joint pain etc. I brought up the suspected rheumatic fever and PANDAS etc. He did ASO titers and anti-dnase B, which were both elevated. Vitamin D was also very low at 9. I was started on vitamin D therapy of 50,000 units weekly. This did help the joint pain quite a bit. I just had my third appointment today (over the course of about one year) and I told him I was not feeling too well. He drew ASO titers again today, and I saw that the previous ASO was again elevated at 560, as well as vitamin D levels. I pushed him about starting a course of penicillin, and it's just as if he stopped listening. He was not agreeable at all. He told me to try a CPAP machine (I was diagnosed with severe sleep apnea as well) and to check vitamin D levels again. I'm so frustrated. Why don't doctors want to prescribe antibiotics in this damn country? He said he doesn't know what to make of the elevated ASO and anti-dnase B. I told him I was going to get penicillin from Europe and, despite his recommendation, take a one month course. I just have so many questions, and it doesn't seem like they know anything about PANDAS. I asked him, what happens when an adolescent with PANDAS crosses over to adulthood? Does it go away? Is it just considered OCD? He didn't know. I'm planning on getting in touch with one of the PANDAS doctors on here, but I'm afraid that they won't even see me because I'm an adult. I'm just so frigging frustrated because I had put all my hopes in this rheumatologist.

[beeskneesmommy]

Dr. Bouboulis in CT sees adults. He treats both my son and me. He has a long wait list but it is worth it if you are planning to stay in the States. Link:

 

http://www.advanced-allergy.com/

[rowingmom]

Most ILADS LLMDs realize that psychiatric disorders and the other symptoms you report can be caused by bacterial and/or viral infection and the resulting inflammation. They will often treat on clinical symptoms alone, but will do a lot of testing as well. They are not hesitant to use antibiotic treatment.

[LNN]

If you do have apnea, I would make a CPAP machine part of your treatment plan. They are a bear to wear and aren;t the best thing since sliced bread, but they do help you breath, which is a pretty important part of getting well. I would also consider looking into methylation issues and possibly 23andMe genetic testing.

 

You may very well have Pandas and I do hope for your sake that abx help restore your neuropsych struggles. But as an adult, your health problems have probably become more complex and you may need to tackle more than one insult. I agree that Dr B is probably your best place to start if you'll be in the US for any length of time. Good luck!

[ChrissyD]

my husband sees Dr. B, as well as my son. My husband had likely PANDAS as a child, is likely vaccine-injured from the Gulf War and had rheumatic fever last year, as well as Lyme. He's 100% better now, mostly from an extended course of antibiotics, Vit D, fish oil and probiotics. We were able to get him seen sooner by starting him with Melissa, the physician's asst. They won't let kids see her for an initial, but sometimes make an exception with adult patients. Good luck!

[pr40]

you may want to check other infections besides strep, mycoplasma and lyme first. the latter with an IGEnex test.

if you find an ongoing infection, dr will not be able to say no to abx.

[EAMom]

I agree with Rowingmom about seeing a LLMD...esp since you mention joint pain and fatigue which are classic Lyme symptoms. Also, LLMD's look for other infections like mycoplasma, and coinfections.

 

I also agree with LLM about using the CPap machine.

 

Even if you did try a 1mo. course of pen, that might not help (esp if Lyme or chronic PANDAS). Most folks do not find pen to be terribly clinically effective, stronger antibiotics are needed. http://www.urmc.rochester.edu/news/story/index.cfm?id=981

 

PANDAS doesn't necessarily go away in adulthood, esp if the underlying trigger remains (eg Lyme or strep).

 

Do you still have your tonsils?

[EAMom]

here an article where adult PANDAS, cpap, and tonsillectomy is mentioned

 

http://www.psychologytoday.com/blog/attention-please/201107/evil-pandas-part-ii-adult-affliction-treatment

[PIK]

RHEUMATOLOGIST SAID I WAS RIGHT!!!!! He called me early this morning with my ASO titers - it was 1500!!! He gave me penicillin VK 500 mg three times per day for 10 days and then once per day for three months. I probably have frigging rheumatic fever again! They're finally starting to listen!!!!

[EAMom]

In one of her lectures (I think it was UC Davis Mind Institute) Swedo (of the NIH) said once daily pen doesn't work. She said pen must be given 2x daily (due to short half life). She said if you miss a dose, you are unprotected for days.

[PIK]

Thank you for this information, I will be sure to ask him about it.

[Dedee]

Does't sound like enough to me either. Really, only a treatment dose for 10days? What happened to a good ole shot of Pen anyway? Glad you finally got a diagnosis, but I'm thinking you need a physician who is a little more aggressive with treatment.

 

Dedee

[EAMom]

I agree Dedee!

[tpotter]

I totally agree. Pen VK did nothing for us. Not strong enough. ASO titers of 1500 are just massive, and you don't want to mess around. I would also look into seeing if you have other infections, as well. PANS is an autoimmune condition, which means the immune system is messed up. That leaves you wide open to picking up other infections, such as mycoplasma pneumonia, chlamydia pneumonia, viruses, lyme, bartonella, babesia, etc. I like the idea of getting in to see Dr. B, and also to get in to see a good LLMD. Lyme is a clinical dx in the absense of positive titers. I'd get on the lists if I were you. Just way too much involved. And, you don't want to mess around with strep + other infections. Good luck.

[PIK]

PLEASE help me everybody. I am very agreeable to seeing Dr. B, but I think that will take some time, and I need to do something about ASO titers of 1500 now. The rheumatologist I saw prescribed Penicillin VK 500 mg three times per day for 10 days and then 500 mg once per day for the remaining three months until I'm scheduled to see him again. I'm not satisfied either with a 10 days course. When I had suspected glomerularnephritis, it took at least three weeks of t.i.d. treatment at 500 mg for it to work. I know the penicillin is working though. I'v been on it for about a week, and I can feel it working. I know it sounds silly, but it's true. I think the strep is either in my ears or my mastoids. I can feel liquid coming out of my ears, and it smells. Plus I'm peeing A LOT. I can get as much Penicillin VK as needed since i have friends and family in Europe, where you don't needs a Rx for antibiotics. I want to stay on the three times per day dose for one full month and then go down to 500 mg twice per day for the rest of the time. What do you think of this? Is it overkill? Will I get sick from too much antibiotics? I just want to rid myself of the strep once and for all. It's been going on since I was at least 14, and I'm 35 now. I know it's there and it needs to be destroyed, and I think the doctor is just being conservative out of fear of being sued, which along with cost, and tied to it, is like the MAJOR problem with medicine in America.