Travel for treatment!

[Hitman3161]

Some of you may have noticed that I have been very active on these boards lately. It's not that I enjoy dramatising my situation, but it has become desperate to say the least. My psychiatrist has just turned me down the much needed co-amoxiclav (recommended by Dr K) required for diagnosis, and asked that I speak to my G.P. I feel that at my age I don't have much time. Being a resident of the UK, I am prepared to travel far to trial the medicine needed to substantiate diagnosis. My question is: is this possible? And is there a possible route I can pursue? I have a retrospective diagnosis of (mild) ASD, ADHD, and OCD. These patterns of behaviour have followed me since childhood but don't do much to describe the acuity of symptom onset and the subtle characteristics that would accompany the behaviour found in PANS/PANDAS. Ultimately, this has left me in a state of pure desolation.

Any advise would be much appreciated, as I'm prepared to do whatever it is to seek what could potentially save my life! Thank you.

[Hitman3161]

I also don't want to keep emailing Dr K as I don't want to sound like a total lunatic. But if diagnostic measures and treatment are being resisted here, then I'm totally stuck. What can I do? I certainly don't want to scare people, but I've heard of the unfortunate case of a man in his 30's who ended up institutionalised, despite matching the symptom profile and testing positive for strep! I'm very sorry, it just looks so bleak.

[MomWithOCDSon]

If you are willing and able to travel, why not actually schedule treatment with Dr. K.?  While he has offices here in the states, I understand he also spends quite a bit of time in Europe, so perhaps there's somewhere within the EU you could also seek his care?

If you are willing and able to pay for your care here in the states (I cannot think of any provisions under which you would not have to bear the full financial burden of treatment, especially since even many of us US citizens have had to pay out of pocket because our private insurance coverage does not recognize PANDAs as a valid diagnosis), I can't imagine that any of the specialists here would decline to treat you, though I am of the impression that Dr. K. has the most familiarity with "adult" PANDAs patients here, as opposed to pediatric ones.

Perhaps some other folks here will speak up as to your options.  Good luck!

[Hitman3161]

Hi MomWithOCDSon,

Thank you so much for your advise. That is definitely a forward step in the right direction. I'll try to schedule treatment with him, and arrange the necessary care. Obviously, factoring in response times to antibiotic and/or steroid treatment to aid in diagnosis and the pontential necessity for further follow up treatment along with travel and accommodation, makes the whole process inordinately complicated. But, if the means justify the ends, then it's a definitely a process worth pursuing. Thanks once again. Europe maybe more viable, but if any others have passed a similar situation or for the benefit of others in the same one, all opinions are valid. 

[Eliself]

I don't understand, you mean you need to try the antibiotic to confirm a PANS diagnosis? I would go to your primary care doctor and request a prescription. You might also be able to schedule a phone consultation with dr k. If you were to travel to him for treatment, I imagine it would be IVIG, not antibiotics or steroids. 

[Hitman3161]

Sorry, to make it clear I've already had a phone consultation with Dr K who made a provisional diagnosis and outlined both diagnostic and treatment reccomendations. Unfortunately, NHS didn't accept the recommendations of the private consult, so I had to both fund and 'cherry pick' the few private blood tests available, and email the results back to Dr K. They refused to prescribe the augmentin, although I was honest mentioned the consult and received a kind referral to ENT - this being one of treatment reccomendations.

 

Unfortunately, notging showed up in the bloods. So he emailed me back to say that this wasn't such a surprise finding in my age group. I was also told that diagnosis was a two stage process that relied on 1) supplementary evidence of infection, followed by 2) response to abx - This being the crucial factor considering the clinical profile.

At this moment, I'm unable to get hold of the augmentin, so I emailed agajn back and asked if I he could personally take over the care and follow through with the recommendations, to which he replied yes.

This whole process has been inordinately difficult and very fragmented as the NHS generally don't accept the validity of PANDAS, and have already clamped down on the use of abx because of resistance etc.

I'm definitely going to follow through with this process, as I've came this far already. It's just shame that the bloods have came back negative. Especially the mycoplasma; I did some reading a while back on Dr Garth Nicholson - another prestigious Dr - who linked ADHD and ASD's with mycoplasma and the gulf war. I'm a gulf war baby as well! 

Aha! I'm just preying that all this works out. My mum also has a history of autoimmunity, so it definitely runs in the family! My symptoms are reminiscent of PANDAS/PANS, so I hope that's the route of it all.

 

[Wombat140]

Hi, I haven't anything useful to recommend but just wanted to say that I know exactly what you're going through!  I'm in the UK too and currently relying on long-distance advice from Amy Smith of California.  I've been struggling with the specialist-can't-prescribe-without-meeting-you-local-doctor-can't-prescribe-for-something-the-system's-never-heard-of conundrum as well.  I'm Lyme disease treated with herbs unfortunately (it's so extreme we daren't risk antibiotics as Lyme is notorious for herxing), so I can' suggest anything about antibiotics.  Bit I wish you the best of luck and I hope you let us know what happens, if you can find a moment!

Actually, I remember I did start a thread about PANS treatment outside the USA, but nobody except me ever started posting i  it.  I collected soe information there so there might be sometihng useful to you there, I don't remember: