I have been on this forum for a couple of months, and learned quickly that this is based in the UK. I'm over here in the States and can't help but notice all of the different treatments that people post about! I was diagnosed at the age of 7 back in 1980, but have had symptoms since birth.
I have had joint problems, eye problems, stomach issues and mouth and genital ulcers. During different stages in life some symptoms have been worse than others. As a very young child I had awful joint pain and mouth ulcers. As a pre-teen/teen I had horrible genital ulcers (and mouth ulcers). Currently my most frequent symptom are mouth ulcers.
Over the years I have seen pediatric specialists, infectious disease docs and 3 different rheumotologists. My rheum. now seems to think and act as if my mouth ulcers are an inconvience and suspects me as a drug seeker. When I have a flare up of ulcers I call my primary doctor who prescribes a Solu-Medrol dose pack and Vicodan, as my rheum. does not. I am fortunate to have a compassionate primary doc, however he does not have experience with Behcet's, except with me.
I have been so amazed with the different treaments that are used in the UK, especially for mouth and genital ulcers. Low dose nicotine patches, inhalers, doxycyline mouth rinses, topical steriods. NONE of these have ever been brought up, ever. I mentioned once to my rheum. about topical steriods and he shrugged and said it isn't typical to use that. I feel like he doesn't keep up with new research.
How do I bring up these findings with out sounding like the nutty lady who cruises the interenet looking for cures? I want him to know that there are treatments available that we haven't explored. I've succumbed to the fact that I'm not going to be cured and sometimes not even controlled. But I would like some treatments that help aleveate the pain and inconvience it has in my life.
Any suggestions on how to bring this up to my doc without sounding defensive, ill informed, or plain old crazy?
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spirojo
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Hi spirojo, my first thought was any chance of changing rheumatologists?
They don't use steroid inhalers for ulcers in Australia either and I just kept dropping it into conversation until finally my neurologist gave me a script - and guess what - it works.
My GP is also very sympathetic(particularly for pain relief) so maybe you can juggle between both of them and get him/her to write the script?
I have very good doctors here in Australia and was told by them that I would know more about behcets than most doctors and the same would apply to you.
Yes it is hard not to sound like a neurotic hypochondriac!
Not sure what I can add to the posts above except to say - have you tried using your dentist for ulcer help? My orthodontist was the one who suggested doxycycline for me.
Additionally, if you are stateside, your pharmacists can make up variants of what is known as magic mouthwash, which they won't do here in UK. There are various recipes and your local pharma should be able to tell you what they can do for you and what your primary doctor needs to prescribe for them to make it up for you. It is all prescription only as far as I know.
Here's a site to get you thinking about it and the various constituents:
Interesting what can be learned from dentists & orthodontists. They understand gingivitis & periodontitis. I recently changed dentists to seeing a wholistic/holistic dentist. He picked up that I have systemic Raynaud's & TMJ disorder...which fits in with my Immunologist's opinion & my own conclusions that I have a connective tissue disorder. I am also one who needs very regular scale & clean by dental hygienist & have one daughter who has early periodontitis. Wondering if what we have in family is Ehlers-Danlos Syndrome...but not sure yet.
I don't know for sure yet if I have Behcet's but I was having an interesting conversation the other day with a new on-line friend from an Aussie Lyme support group. She is a high profile Pharmacist who also has a PhD in Immunology. I mentioned Behcet's and she straight away said "Oh you need to target Spirochaetes in mouth like T. denticola"
(Treponema denticola)...which I read makes up ~ 50% of dental plaque.
She went on to advise me I would need:
A course of Antiviral...(my GP has let me try Valtrex, Valaciclovir)
+ Doxycycline & Metronidazole (Flagyl) or Tinidazole (combination kills T. denticola)
+ Clarithromycin (or other Macrolide)
She said Doxy & Flagyl need to be taken with food. She said take a high dose probiotic 2 hrs after or 1 hr before.
I don't fully understand all this yet, as I'm still learning. I realise it's a whole different approach to suppressing the immune system...but it's interesting.
I just had a course of Flagyl followed by a course of Doxycycline, because my abdomen bloated & became tender after some radioactive scans...I became so ill I was near death...but that's another story!
Anyway what was interesting was that my intractable hand eczema healed up after the Doxycycline. The Pharmacist cryptically said to me "well that maybe is a sign"....so I'm not sure, but I guess she may mean that Spirochaetes may be my issue...and that includes Lyme disease...Borrelia as well as T. denticola.
I'm booked to see a Lyme literate Dr end of this month. So am exploring that avenue but it's controversial, especially in Australia.
I have a hard time tolerating antibiotics, but something tells me I will be revisiting Doxycycline + Tinidazole or Metronidazole....on some kind of pulsing schedule.
So in summary I need to target Viruses, Cell Wall bacteria, Intracellular bacteria, Cyst formers, & break up biofilms...easy
Don't worry I'm doing all this under medical supervision. I managed to talk my GP into ordering a few viral & bacterial tests before I started, including Mycoplasma & Chlamyd. pneumoniae etc.
I also have a researcher (PhD) advocating for me now to someone high up in Aust. Govt...because I am getting stuffed around in my quest to get diagnosis & treatment ie going downhill fast. I told my GP this...LOL...it was like water off a duck's back...but at least he ordered the tests I wanted...(some I will pay for)..and he prescribed the antiviral...kindly giving me some free samples to start on.
That's very interesting indeed, thank you for this.
Doxycycline has worked very well for me this time and I also use a probiotic daily too anyway which supports your information.
Interesting especially about metronidazole, doxy, probiotic and clarithromycin as a package deal. Looks much like the GI ulcer route I took. Personally, I find clarithromycin rather harsh on my system but it seems to work well on stubborn chest trouble.
Low dose clarithromycin peaked my interest recently too:
Interesting article thanks Beau. I just had a Sigmoidoscopy done in which my Gastroent could say he saw no sign of Ileocolonic ulceration. After the procedure though, I think I had an episode of thrombophlebitis in my foot...but it was variously dismissed as "part of my arthritis picture".
To me my problems seem higher up in small intestine area & peritoneal connective tissue. I also get oesophageal ulceration & stomach ulcers. (H.pylori Neg).
I find every antibiotic a real trial to take. Then again I did not take a probiotic until afterwards.
I once had a huge reaction to Plaquenil, which I thought was an allergic reaction...but now I think it was killing something off. I got painful flushing to cheekbones and then a red scabies-like rash on arms and legs. I also got swelling around a joint below my thumb.
a lot of the medicines for behcets like Plaquenil or colcocine are hard and even impossible for anyone/regular people or sick to take. dont feel bad about that it just is what it is. they are harsh meds. also with the upper and lower gi work up the problem is that your symptoms might not be happening when the test is done which is aggrevating. we finally stopped going to gi as they didnt help at all. none of them. they ran test but nothing came up and he was sick and hurting.
our dentist in the united states act like they dont know anything about mouth ulcers. thanks for "T. denticola" i will look that up. i am the mother of a behcets patient. He cant take flagyl because it makes him so sick and makes his stomach worse. the dr changed him from valtrex to famcyclovir. it has really helped for the shingles or shingles like stuff in his private area. he cant take anything to supress the immune system as he is a cancer survivor (thank God) so that puts him out of a lot of meds. he does take 50 mg of minocycline daily. i dont know if it does anything but it helps some behects. he cant tolerate a lot of meds by mouth as they make him throw up sick and with mouth ulcers that has to be kept to the bare minimum.. we have seen so many drs and they did find he had Bartonella henselae and he had to take five packs of zpacks and got rid of that suposedly. he actually has two infectious diesease drs that are very educated and want to help but cant figure anything out. no one else can either.
Flagyl is too hard for my don. He takes mince line and it happens to be the only antibiotic he can take by mouth that doesn't make him sick but only 50mg a day. He can't go up as it makes him sick. Also on the Famvir he can only take one dose not twork like he should cause it will make him sick. Will ask Dr about the medicine u mentioned in the mouthwash
Hi as a Behcets patient for 27 years but only diagnosed after 12 years I agree with everything the others have said. It is very difficult and stressful having to fight for everything but you have to do it. In the meantime an odd tip that I discovered by absolute chance many many years ago.......when the mouth ulcers are so bad that even water hurts and burns try.......CocaCola........yep for some reason it soothes the pain and also helps to keep you hydrated which is very important during a flare.
defo agree with the others tbh you do kinda have to be firm with your doc and tell him what meds you want dont ask, its your body and this is not txt book were all different and respond differently to certain meds. also try aloe vera toothpaste as regular toothepaste can sting goodluck xx
Uhmmmm...... all I can add sweetie, is maybe print off some of the pages from the BSS web site and give them to your guy and ask him to have a good read of them when you see him next. Maybe even mail them to him recorded delivery with this request before you make the actual journey to see him.
My theory as that these documents are from a registered well recognised society that deals with BD and anyone who decides they are not valid and of importance to treating a patient who is suffering from BD really isn't worth keeping as one of your experts !
By putting your request in writing it becomes official and he should feel the need to respond to your request in the best way possible which would not be to ignore the papers and your needs for him to understand as much about the condition as he is able.
What do you think hun ...... worth a try ? It lays all your cards on the table and can be pointed to if he decides not too discuss them with you as a very good reason why you need to change doctors.
first of all if possible, find another rhuemy. they are the drs in the united states that can write the pain meds you need without the dea being on top of them so much. Seriously, in America, there is some right we have to pain control. another reason to find a new rhuemy is that your dr is not going to listen. I am the mother of a behcets patient and how I had to get people to give him any kind of new treatment is just sit there and refuse to leave till they give me what i think he needs. in your case you may feel better to print off something from the internet to bring with you. the dr doesnt have time to look at it, so just tell him, I want to try ____ and then just be quiet and wait. if he says no, again say i need a prescription for _____ and then just be quiet and wait. Since he doesnt have time for that he will eventually write it. change rhuemys if at all possible. if the new one doesnt act right change again. You are not technically "dr shopping" for narcotics so don't think bad things. you are trying to get treatment. also if you have a teaching hospital near you they might help you. if at all possible get on obomacare (which is really bcbs most of the time) or private insurance. If you are on medicaid, you don't have as much control to get the drs to do right. I will say there may be somebody out there that is getting relief but my son has tried everything and nothing helps. he has great pain meds that i had to fight for years to get but unfortunately he is still in pain. his quality of still sucks. sorry to be a debbie downer but it all sucks. If you can get anyone to give you ivig and no steriods he has had luck with that till they forget and give him steriods and in his body it negates the ivig. it really did help for a few months and for whatever reason (valid to them) they gave him a steriod treatment and we/no one realized it was messing up the ivig. he had half a treatment yesterday (his veins blew) so i am praying that he gets relief.
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