Pandas?

[DC24]

Hello I am 19 years old and I had a bout of pandas when I was 5 years old. I overcame it in 3 months with antibiotics and have been fine up until this summer. At the end of July I was bitten by a palmetto bug/water bug. A few days later I developed a rash, but tested negative for everything, strep and Lyme included. I was put on doxycycline and had a reaction to that. Given steroids and the rash dissipated, but shortly after I took a turn for the worse. I have developed depression, anxiety, and some OCD, where I am obsessing on my health and every little body abnormality.

 

Anyways in late August the area I was bitten in developed a puss filled bump and I took some 2 year old Keflex, it almost took care of it but not entirely. I gave up I. The Keflex by 10 days and chalked it up as not being pandas. However I went to my doctor for the anxiety medication and my mother insisted on a strep test, even though I had no symptoms. The dr was stunned as it came back positive and he prescribed me 875 mg amoxicillin for 30 days and a penicillin shot. This was 4 days ago and I have seen virtually no improvement. I am having these obsessions, constant muscle trembling and a weird sensation above my left eye. I also have this feeling that I am not getting enough air, but I am. Could this be pandas? I doubted bearing my age, but I have a strep infection. If it is pandas what should I do? Also I wanted to point out that since I started the amoxicillin, this a deep abscess I've had in my neck for a few years now has developed a head. Any help will be greatly appreciated.

[MomWithOCDSon]

There's quite a bit of evidence that the "P" for "pediatric" in the PANDAS/PANS acronym is a misnomer . . . that people of all ages can suffer from the auto-immune response to strep and other bacterium.

 

It sounds to me, based on your reaction (or lack thereof) to the amoxicillin that it is not an effective antibiotic for you, and given all of the other "infection sites" beyond the positive strep tests, you might have something besides strep going on? Any other testing done at this point, such as an immune panel to see if your IgG and/or IgA results are in the normal range?

 

For my DS, amoxicillin wasn't a strong enough response for him when the PANDAS hit hard at age 12 (he was technically adult-sized, though, at 90+ pounds at the time), even though the only culprit we could discern in his case was strep. What we found to be effective for him was 1,000 mg. Augmentin XR (extended release amoxicillin plus clavulanic acid), twice daily. But I know many other suffers here have had success with other antibiotics, including Keflex, Cednifir, azithromycin, Bactrim, etc.

 

All the best to you! Hopefully some other folks will chime in soon!

[Sirena]

Air hunger feeling is associated with Babesia infection-maybe thats a clue. There are multiple strains so you need to test for for more than one--such as the lyme co-infection testing from Igenex...Babesia is treated with antimalarials and antibiotics. I hope you feel better soon.

[mama2alex]

What was your reaction to the Docycyclene? I ask because it's possible it was a herxheimer reaction rather than a bad reaction to the medicine. The Lyme tests a regular doctor will use are highly unreliable, and given the air hunger, Lyme and coinfections - especially Babesia and Bartonella - are worth a second look with better tests (Igenex).

 

Muscle trembling can be caused by Lyme, air hunger by Babesia, and OCD/obsessive thoughts by Bartonella. Your best bet to figure this out is a Lyme-literate MD.

[DC24]

Thanks for the replies. My reaction was a body rash. Does anyone know of a Pandas/Pans doctor in South Carolina.

[DC24]

Not sure if it would help, but I think that my rash on August was Scarlett Fever.

[DC24]

Well I wanted to update you all. I was put on augmentin and everything with the exception of the obsessive thoughts stopped. The pressure above my eye, nausea, hand shakes and all that mess is gone. With the exception of the nonstop thoughts. I am in therapy, but I have seen no improvement in the thoughts, but my mood is slightly better. I have not been diagnosed with OCD or PANDAS, but I was diagnosed with PTSD and Post Strep Syndrome (whatever that is!) the doc wants to "nuetralize" the strep and check my thyroid. He said it was definitely had Scarlett fever. I don't know what to do about the obsessive thoughts, as I said before they are nonstop. I am 19, will an SSRI help with this or do I just need to try vitamins and magnesium? I feel like this is a cycle that is impossible to break.

[MomWithOCDSon]

DC24 -- You will likely get varying opinions as to whether to hang on with medical treatment, therapy and supplements and avoid "psych meds," including SSRIs, or whether to add an SSRI to your treatment regimen, if even only for a period of time. In the end, it is a very personal decision, and one you'll probably want to make in concert with your care team and your family.

 

Some people think that adding psych meds/SSRIs to the mix can "muddy" the diagnostic picture as to how effective your medical interventions are. Others have concerns about the impact of psych meds on the brain chemistry, period, and feel that effective medical treatment, therapy and/or supplementation should successfully address all those needs, provided they're the correct interventions.

 

Because my DS was diagnosed with "regular OCD" before we successfully secured a PANDAs diagnosis, and he had been in therapy and taking a low-dose SSRI for a few years before PANDAs treatment, I come to it with a slightly different perspective than perhaps more typical PANDAs families. I know what my son's quality of life was before SSRIs, and I know what it became after implementing an SSRI, and I wouldn't trade the positive impacts the SSRI brought to the table for anything.

 

When we didn't know it was PANDAS initially, the SSRI largely gave him back a functionality he lost suddenly over the course of a couple of months in second grade; he forgot how to read, was anxious all the time, huge separate anxiety, etc. Even though we couldn't prove PANDAs and thus couldn't get anyone in our area at the time to give him medical treatment, the psych prescribed an SSRI and, out of some level of desperation, we accepted it. Knowing now what I do about PANDAS, I'm sure there was a measure of medical healing that played into things as well, but within about 3 months of starting the SSRI, the worst of his anxiety/OCD behaviors had evaporated and he stayed well, happy and functional for nearly another 5 years, until another round of strep and the PANDAs exacerbation to end all exacerbations.

 

When he got very sick and dysfunctional due to anxiety and OCD several years later, we transitioned from one SSRI to another, chiefly because our psych at the time thought that the first SSRI had "burned out" and had ceased to be effective. Finally getting a PANDAS diagnosis and medical intervention (Augmentin), we came to realize he needed more than just an SSRI to return to himself, but we didn't take the SSRI away initially because we wanted to change as few things at the same time as possible. But especially once we'd finished with antibiotics, we came to realize that the SSRI was/is supporting his overall mental balance, supporting his mood and giving him leverage over the obsessive thinking that he can slip into, especially under stress.

 

So, all that's to say, it really depends on the person and the circumstances. Plus, an SSRI is not, by any means, a "quick fix." While my DS and some other family members of mine have been able to feel the impacts of an SSRI within a few days, they generally don't achieve full efficacy for 4 to 6 weeks. In our case, it has been an important and beneficial component, though others will have contrary stories to share.

 

Sorry the answer isn't clearer, but wishing you the best in your healing. Glad some of your concerns are responding well to treatment thus far!

[DC24]

I would really like to say that I appreciate all the advice I have gotten here. I believe I will hold off on any changes until 11/16 when I can get neutralized. Has anyone gone through this process? I am very freightened by it but Dr. Lieberman thinks it will help. Also has anyone ever used Hardy Nutritionals?

[Sagive]

DC 24, thanks for updating and thanks everybody else for responding. I am also tired of antibiotics (azithromicyn and always searching for azithromycin discount). I am having the same thing now going (I'm in Los Angeles) and the doctor also thinks that it is going to help. I never used Hardy Nutritionals but as you - I also heard about them. been thinking about using them either but not sure if they would help. if you do use them - please come back with an update and tell how much they help if they would help at all. thanks again for everything!

Edited February 13, 2017 by Sagive

[DC24]

I've seen some real progress lately, but I must ask. Why isn't it harder to treat adult PANDAS