Is it true that nothing short of IVIg ever helps adults?

[Wombat140]

I've gone on firing letters and e-mails at everyone I can think of, in hopes of finding a doctor with some knowledge of PANDAS within reach of where I live. I've just had a reply from one of them (Dr. Kovacevic, some of you have mentioned him) which says that "at the age of 22 the ONLY treatment that has a decent chance of success is the IVIG treatment. Anything else, SSRIs, antibiotics, psychological counseling etc. essentially has NOT shown any success and may give you a temporary relief (if any) at best."

 

Is this true, or have any of you (or your grown-up children) had any success with just antibiotics?

If not a lasting result, does it at least work temporarily? Because in my current state I'm not entirely sure I could cope with IVIg (or rather, that any doctor could cope with giving it me!)

And anyway, is IVIg even available in the UK? I don't expect so on the NHS, but can it be got privately if I could find a doctor to order it?

 

Thanks very much.

Edited September 12, 2012 by Wombat140

[Dedee]

It's a shame that you don't have more access to IVIG. Can you explain why you think you couldn't "cope" with IVIG? I assume you are coping with quite a bit right now. The process of IVIG itself is very simple. There may be a few side effects but they are usually temporary and if you prepare they are easily managed. The most difficult part of IVIG is getting insurance approval and just getting the whole thing set up. For us, once we decided on giving up on the insurance piece and go with out of pocket, it wasn't difficult at all.

 

I understand that it may involve quite a bit of travel on your part so that has potential to be stressful. It would be great if you were able to find someone in your area to help you out.

 

Dedee

[Alex]

Here are links to a couple of articles by a psychiatrist that claims good success treating adult PANDAS with tonsillectomy. The reader comments to the articles are interesting as well.

 

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

http://www.psychologytoday.com/blog/attention-please/201102/evil-pandas-scourge-the-brain

 

Good luck, Alex

[Fixit]

Hey ALex...thanks for the links.

 

I was just about to post about the TA that my dh who has tics.

AS you may recall and he has had chronic/active strep infections all his life.(i always thought it weird that he always had strep and i never have)(yes had my titers checked, but will redo just to be sure i didn't misunderstand my findings)(i believe my immune system is obviously way better) whenever he was on abx he always seemed better and i would tell him so.

We finally had his tonsils out a 1 1/2 years ago. He was not on abx for more than 2 weeks post surgery...i should have asked one of my pandas dr to get him a script for a month or 2.

But i will say that he is better than 6 months ago and better than 6 months before that.

I think, as mentioned before, that he has a massive yeast infection that he has had forever do to decades of abx w/o probiotics. I am trying to get him to address it. The little i get him to do may be helping. he forgets, gets busy and travels out of state most weeks. it is difficult to stay on a regiement.

I don't know about ivig only. I have greater hopes than that. It is probaby true, depending on what the trigger or dysbiosis is, that it will take longer in adulthood, as with most recoveries.

(ps if anybody has lymes, its him, as he has had countless tics pulled out of his skin while liveing in the Reston, herndon, leesburg area of VA many years ago, prior to its development)

Edited September 12, 2012 by Fixit

[Fixit]

just thought of this..duh...

maybe his yeast is also a little better since he's not on abx anymore.

no step, no need for abx, maybe helping to slow recovrey of gut...even though i cant get him to listen about diet, beer, and the need to conitnue probiotics!!!!

[EAMom]

Here is an older thread where T/A in adults is discussed http://www.latitudes.org/forums/index.php?showtopic=16422&st=15

 

I should add that with this Turkish study http://www.turkpsikiyatri.com/en/default.aspx?modul=article&id=592 , adult men responded to PEX, but relapsed weeks or months later with respiratory infection (as they were not put on any sort of long term abs after PEX). I would assume that would be the same with adults getting IVIG, the potential for relapse, esp. if there are no follow-up abs.

Edited September 12, 2012 by EAMom

[EAMom]

BTW, wombat, are you a male or female? the reason I ask is that there are some discussions about how certain types of birth control pills can help PANDAS.

 

Also, if you are on Facebook, there is PANDAS/PANS international group (or something like that). Maybe someone will have some leads.

 

Have you tried a trial of antibiotics (full strength, like 1-2 mo. month of Azith. or Augmentin)?

[evergreen]

In our experience, Augmentin seemed to help while waiting 4 months to start IVIG. He also did have some relief with psych meds. These diseases present uniquely in each individual. They are still learning what to do. I would expect to get some help from the antibiotics alone, then make a decision after you see what happens.

best of luck to you

[Wombat140]

Thanks for the replies everyone.

 

Why couldn't I "cope" with IVIg? Where do I start... but for one thing, struggle with being touched by anyone, usually can't keep it up for more than a few seconds without pulling away and jerking violently. (Just one of my meaningless OCD reactions, cannot remember if there was ever a reason). I don't think this would be conducive to getting drips in... If the OCD improved a bit on antibiotics even temporarily, though, IVIg might be a possibility.

 

Yes, we'd be paying for any treatment out of pocket - we don't have medical insurance, few people bother with it over here as the NHS covers most things. I'm just not sure whether IVIg can be had in the UK at all. It's strictly rationed (owing to shortage of immunoglobulin) and PANDAS is down in the guidelines I found as "presumed immune-modulateed but no evidence of efficacy", the lowest priority, but I don't know whether that only applies to NHS prescribing. Do any of you know of anyone who's managed to get it in the UK?

 

Thanks for the link about tonsillectomy, Alex, that made me feel better. Although the OCD would probably rule that out as thoroughly as IVIg; but I still feel a lot happier knowing that things other than IVIg HAVE been known to work in adults!

 

No, I haven't tried antibiotics yet, or anything else PANDAS-related... first I have to find a doctor to prescribe them. And I'm beginning to feel that there isn't a doctor in the whole country who knows any more about it than I do...

[EAMom]

Thanks for the replies everyone.

 

Why couldn't I "cope" with IVIg? Where do I start... but for one thing, struggle with being touched by anyone, usually can't keep it up for more than a few seconds without pulling away and jerking violently. (Just one of my meaningless OCD reactions, cannot remember if there was ever a reason). I don't think this would be conducive to getting drips in... If the OCD improved a bit on antibiotics even temporarily, though, IVIg might be a possibility.

 

Yes, we'd be paying for any treatment out of pocket - we don't have medical insurance, few people bother with it over here as the NHS covers most things. I'm just not sure whether IVIg can be had in the UK at all. It's strictly rationed (owing to shortage of immunoglobulin) and PANDAS is down in the guidelines I found as "presumed immune-modulateed but no evidence of efficacy", the lowest priority, but I don't know whether that only applies to NHS prescribing. Do any of you know of anyone who's managed to get it in the UK?

 

Thanks for the link about tonsillectomy, Alex, that made me feel better. Although the OCD would probably rule that out as thoroughly as IVIg; but I still feel a lot happier knowing that things other than IVIg HAVE been known to work in adults!

 

No, I haven't tried antibiotics yet, or anything else PANDAS-related... first I have to find a doctor to prescribe them. And I'm beginning to feel that there isn't a doctor in the whole country who knows any more about it than I do...

 

These UK docs were on Beth Maloney's list http://www.savingsammy.net/providers.php :

 

UK

 

Gavin Giovannoni, MBBCh, PhD

Neurologist and Immunologist

4 Newark Street

London, UK

44 20 7377 7472

44 20 7377 7033 (fax)

 

Professor Peter D. Hill, FRC Psych

Psychiatrist

17 Harley Street

London

02074 862 332

 

Great Ormond Street

LondonWCiN3JH

0207323 1535 or 020 7829 8679

 

 

 

Dr Andrea Whitney

Peadiatric Neurologist

Southampton General Hospital

Tremona Road

Southampton

Hampshire

UK

023 8077 7222

[Stephanie2]

My sons and I have pandas. I tried SSRIs at first with great success and then I bottomed out and became suicidal and had to discontinue them. Abx helped but I had to be on treatment dose constantly and it was tearing up my stomach. Then I got all of us to a homeopath in NYC (via skype) who specializes in autim/pandas and she got us straightened out very quickly. This was 18 months ago and our pandas is still very much under control without abx or psych meds. I know many of ther kids/moms who are being treated by her with great success, so I would say Dr. K is absolutely wrong about the necessity for IVIG.

 

our homeopath (angelica lemke...she see patients internationally over skype, you do not need to leave your home)

www.asdhomeopathy.com

 

 

I've gone on firing letters and e-mails at everyone I can think of, in hopes of finding a doctor with some knowledge of PANDAS within reach of where I live. I've just had a reply from one of them (Dr. Kovacevic, some of you have mentioned him) which says that "at the age of 22 the ONLY treatment that has a decent chance of success is the IVIG treatment. Anything else, SSRIs, antibiotics, psychological counseling etc. essentially has NOT shown any success and may give you a temporary relief (if any) at best."

 

Is this true, or have any of you (or your grown-up children) had any success with just antibiotics?

If not a lasting result, does it at least work temporarily? Because in my current state I'm not entirely sure I could cope with IVIg (or rather, that any doctor could cope with giving it me!)

And anyway, is IVIg even available in the UK? I don't expect so on the NHS, but can it be got privately if I could find a doctor to order it?

 

Thanks very much.

Edited September 20, 2012 by Stephanie2

[LaurenK]

I think anyone who says that theres one option and one option only probably isn't correct. I personally have been treated successfully as an adult with IV steroids. The problem with waiting until adult hood is that some of the abnormal behavior can become permanent and difficult to reverse.

[Wombat140]

EAMom - thanks for the addresses. I'd written to all of them before, asking if they knew anyone I could get to from where I live (they're all too far south), and was just a bit unnerved by the way none of them mentioned PANDAS in their replies, just said they didn't happen to know any adult psychiatrists in my area! So I was beginning to wonder if any of them really did do PANDAS. Peter Hill actually said that he thought PANDAS was usually best treated like any other form of OCD.

 

But since I made that posting I've FOUND SOMEONE! As usual he's based in London but he does occasional clinics in Manchester, and I've got an appointment on Tuesday (shorter notice than usual, too - someone cancelled). Wish me luck :-) :-) :-)

 

Lauren and Stephanie - thanks, that's very encouraging! I'll remember about the homoeopath, too. I did see a local homoeopath for quite a while, with entirely random effects, but then I don't think she knew a whole lot about the condition - she did her level best, but I noticed she did keep on quizzing me about my emotions, rather as if she thought that was at the bottom of it. (And it hadn't even occurred to me it might be PANDAS at that point.)

[Alex]

Wombat, glad to hear about your appointment. The same psychiatrist who wrote the articles about tonsillectomy submitted a paper to a medical journal concerning adult PANDAS. Apparently the paper was rejected by the journal, so I am not sure how good it is. However, he posted it on his website and it specifically addresses his experiences treating adults with PANDAS. Definitely worth a read and maybe something to take to your appointment. The link is below. Good luck, Alex

 

http://beverlyhillsshrink.blogspot.com/2012/03/adult-pandas-bare-facts.html

[Wombat140]

Just to say thanks very much. Sorry I didn't reply before, by the time the board was working again I'd forgotten about it.

 

The appointment went fine. Really nice doctor. He reckons it probably is some kind of infection response (with streptococcus being the most likely culprit). He wrote a prescription for azithromycin but said I'm not to take it until ASO and Anti-DNAse B tests have been done, as it might distort the results. I'm to take it after that whether or not the tests are positive, as he doesn't think they're all that accurate, but I think he wants them anyway for reference.

 

Unfortunately the blood tests have had to be put off, as he was going to write a letter to our GP requesting them and it hasn't been sent and the appointment was tomorrow morning. But hopefully it won't be too long before we can get another.

 

What I did find very encouraging was that he seemed to recognise everything - even the symptoms that don't quite match either regular OCD or TS - and said he'd cured a few cases like that before. What sticks in my mind is what my mum says he said to her before I came in. He was asking what I was thinking of doing for a living, and Mum said that with things the way they were, neither of us had really thought about it. "Oh, yes," he said, "but when she's better?" When!

Edited October 3, 2012 by Wombat140