Firstly, how many of you take probiotics daily purely for gut health, despite taking prednisone or any other immune suppressant meds? And do you feel better with your conditions as a result.?
2nd.....I'm on an antibiotic at the moment and I've been told so many different things. Not to take probiotics at all because of the pharmaceuticals (prednisone, plaquinal, Warfarin) I'm taking.
Some say take them 3 hours after taking the antibiotic or take them only after the course of antibiotic is completed for only 14 days, then stop completely??
I'm so confused. What works for you. The websites are just as confusing.
3rd...I'm wanting to fly and it's a 5 hour trip. (I have APS, Lupus and PH). Last year I flew 1.5 hours and by the time we had reached max altitude I felt oxygen starved for the 20 minutes at that altitude then gradually felt much better as the plane started to descend. I really wasn't aware of what was happening, I thought it was a weird panic attack. My question is, would an airline drop an oxygen mask for me for this trip I'm wanting to take once we reach an uncomfortable altitude.?
Thanking you in advance for help on any of these questions.
Cheers
Holly
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I’ve just been reading through some of your posts to refresh my memory before I’ve come to chat with you.
What state are you in? Are you any more comfortable now that 8 months have passed with you APS Specialist Rheumatoligist re your kidneys and the 1 gram of protein in urine? ( I’m also now always spilling a little protein into urine. My Rheum just says it’s part of the inflammation process of the disease. )
Also, where are you running the INR? How stable is it? ( hahahahaha...exactly...but seriously... have you found any relief or “tricks?”
Have you ever had a bleed if it gets a little high? ( gums with brushing teeth? Brief nose bleed?)
Do you have a history of DVT? Arterial clots?
Do you suffer the plaguing migraines?
Are you also on an anti platelet?
I would consider ( as this is quite common in the UK and it’s been recommended for me also here ) to get an appointment with your cardiologist. Ask about a Lovenox ( enoxaparin) injection as a ,” booster.” It will be in and out of your system very quickly. Once the plane is at the gate and you are in your seat and you are on the tarmac but not yet in taxi mode, inject.
If you weigh 115 pounds, I would think 30mg would be enough. Just the tiniest bit. Think of it as a little booster. ( im not a doctor obviously, but my Hematologist and I ,”play” believe it or not. We have worked out a few glitches over time. )
The only concern I have with this , and i don’t know how valid it is , is you have a very turbulent flight could this be a problem for tiny vessels in the brain for you. We are trying to over all get better oxygen to to lungs. This may well be too much thinning for you. ( I don’t know your clotting history.)
I would much prefer a quick boost of heparin over an anti platelet though because the heparin at a low dose would not have a high peak and would leave your body quickly ( 8 hours with a very low dose) where as aspirin would affect platelets for a few days.
I would hope a specialist would have a better solution, or certainly provide better clarification for you on these two options and again, I should hope offer you better , specialized pharmapseudical options specific to your condition ( PH) . I do not know anything about PH. I know it’s linked to oxygen/ proper anticoagulation at the end point like every thing in the body ultimately is.
As far as the gut biome, I tend to be cautious with claims that ,” know all.”
I do , however, put stock in research that several Respected doctors are highly interested in, especially if they are looking at it from different fields of expertise.
The research I’m talking about now is Mast Cell Activation Syndrome.
Have you checked out the post that APSnot fab / Sticky blood mentor put on earlier this month regarding this? It’s very scholarly look at this.
I also put one on regarding the gut biome and kidney nephritis. All the more reason to read below:
1. Dr Jill Schofield ( Rheumatoligist, Denver CO) is very interested in this as it pertains to APS
Center for multi system Disease - her website contains video links you may be interested in. She studied under Dr Hughes. She said 1/2 of her patients with APS have MCAS. She is on the international Hughes Doctors recommended list.
2. Dr Lawrence Afrin , NY ( Hematologist) has done pioneering work in the field.
Book : Never bet against Occam
3. Anita Tee- masters Level nutritionist - Canadian - specializes in low histimine diet and recommends specific joghurts that are low histimine. ( they do not promote certain bacteria that promote histimine.) I recommend googling her and subscribing to her site for tip on low histimine food education.
* ** NOTE: ***. Anita Tee is not a specialist in APS and does not know about vitamin K interactions. This is only about Histamines/ and histimine intolerance/ and a low histimine food list / articles/ etc.
I do NOT recommend buying ONE thing from her. I myself have not, nor have I spent one penny. It is free to sign up. Free. Information- good information comes for free. It’s the cookbooks , etc that people can buy, but being on warfarin we wouldn’t do that.
As a side note to high light my current state of confusion on this as I’m very new to trying to understand all of this as I am newly diagnosed with MCAS: One of our Admins has a little apple cider vinegar to help balance her tummy every day. She has posted this info in replies to many forum members. Vinegar is listed as as a very high histimine food, and I’ve been confused, vinegar and fermented foods are to be avoided as they are triggers. But last week in an email Anita Tee put out, wouldn’t you know... on the “ good list” was ... apple cider vinegar!
So how can vinegar be on the “ bad” list... but apple cider vinegar be on the “ good” list?
So far it works like this: There are many foods that are naturally high in histimines. Also, how they are prepared makes a difference. And if they produce bacteria, ( think of your joghurt question- what strains went into the original culture?) which are very high histimine producers.
Nothing in a can
No pineapple
No left overs ( as things produce Bacteria they have higher amounts of histimines)
Freeze any left over foods
No night shades - basically)
No spinach or avocados
Only very fresh meat
Only salmon really - Very few fish are ok
Not a lot of nuts pass test- no walnuts
Histimines cause reactions in didfferent body systems. Not every one has all body systems involved. Some people may have one or two.
1. GI system- ( nausea- diarrhea)
2. Skin- ( hives, rash...flushing)
3. Migraine. ( histimine in red wine- chocolate- classic example.)
4. Lungs- asthma
I think it’s even more extensive than this. This is just a basic over view.
So to answer your question about probiotics and joghurt, it requires your to understand a bit about mast cell, how that ties to APS, And histimine intolerance, and how to wade through a lot of JUNK and get to actual quality articles. The one Lynn posted is the best one I could find, and this Anita Tee is annoying to get through as much doesn’t apply to us, and some of it is definitely promotional, but you can gleen good quality information from her work regarding histimine intolerance as she is a degreed nutritionist.
4. Dr Kriegel , Yale University
He making an impressive name for himself as a world class researcher in auto immunity and the gut biome / micro biota of the gut and that relationship to auto immune disease.
I can’t recommend him personally, and he is not on the international list of APS specialists. In other words, I don’t know if the USA APS specialists work with him or not. I do not know what his qualifications are in the Anti phospholipid Syndrome. He may just simply research only and not hold clinic. He did publish a fantastic paper on just this subject - gut biome - a specific bacterial observation in APS or Lupus patients I believe.
You could see about securing an appointment with him if you had an interest, or if it were feasible.
Hi Kelly. Thank you for responding with such great info. In answer to some of your questions: I live in Canada. I do not like my new doctor. He never has anything to say. I asked about the flying. He said no need to do any prep for flying even though I told him about what happens at high altitude. My INR is very seldom stable and yes from time to time, bleeding nose, gums and sometimes vessels burst and make quite a mess. Sometimes the vessels burst in one or the other eye. I have on several occasions woke up and I'd have a very blk/purple/red eye. Like I had been in a brawl. I'll have bruises anywhere on my face, chest/breasts , thighs etc...Real odd places. I do not have a history of DVT that I know of. I had a stroke 35 years ago when I was diagnosed. I don't know if that counts as a DVT. I don't get painful migraines, only the silent kind with all the weird stuff like flashing lights, spaced out, tingling fingers etc. But then it goes away and no headache. No, I'm not on anti-platelet meds. Is that what I should be taking to fly. What about an oxygen tank? What is mast cell and how does histamine affect APS? I'm so confused with this illness. I've had it for many years and quite honestly I didn't realize how deadly it could be until finding this sight. But at least now when weird stuff is happening as it has been for years, I now know what the culprit most likely is that is causing these symptoms.
I'm going to read some of these articles you mentioned. The cell one sounds intriguing. Thank you so much for taking the time to help me out with some of my questions. I am presently drinking Keizer 3 hours after taking my antibiotics. I don't want a yeast infection from the antibiotics.
HI, I sent you a private message a few days back regarding a specialist in Canada, and also a new team there is coming on board with Hughes Syndrome/APS, at a later stage. I am not on Warfarin and I take a daily probiotic which helps me immensely, but in your case I would be checking in with the medical expertise before you commence with any new regime. MaryF
Yes I will check with my Doctor, but knowing him he won't have much if any advice to give. I did check into the only 2 APS specialists in Canada. One of them Mary Clarke was my Dr when I lived in Montreal, Quebec for 7 years. She is now teamed up with another Dr and have moved to Calgary, Alberta. That's a 5-1/2 flight for me to get there. Had she stayed in Montreal, we could have driven there in 2 hours. You mentioned theres a new team coming to Canada with Hughes/APS at a later stage. Where could I get any information on this. This is hopeful news. Thank you for your wealth of information. Much appreciated.
I have message you with the contact details of the new team, who are getting set up, and have just been on a visit to London, and are based in Toronto, soon they will be added to the charity website. MaryF
That’s great news, Mary. My brother , who lives in Vancouver and is a retired uni Professor from there, reached out to Professor Hughes a couple of years ago and got a reply from him regarding a specialist of APS in Vancouver. That’s why I asked Holly if she was perhaps near Vancouver.
She must have better, specialized care.
Hopefully the team you will recommend can link with the doctors she currently has.
Hi Mary. I'm so sorry, I feel silly,but I don't know where to find the private messages you've sent me. Is there somewhere special on this site that I sign into? I'm very inexperienced with this kind of website. Thank you Holly
( look at top. The tool bar across the top of screen. Do you see the “ home “ icon at the far left corner? Looks like a little house? The third icon from the left are two little “ talk bubbles “, or “ chat” bubble. This is the “ chat” icon, or to be more precise, the private message icon. )
Thanks Kelly. I now know. Still learning how to navigate this website. I’m still reading articles. Very interesting info! I do think I have some allergies so I’m going to cut out some of those foods you mentioned that are contributors. Im trying to sell my condo and finish my marketing course so I am feeling sooo overwhelmed at the moment. My husband is leaving for Germany on Sunday for a week so I’m a bit stressed about that as well. I know, I should take a deep breath and chill. Have a wonderful weekend. Cheers Holly
Kelly has covered probiotics very well and there’s nothing I can really add to that.
However, I’m not sure about Canada but here in the UK if you need oxygen on a flight you have to take it yourself and there are only certain concentrators and bottles you can take on a flight. Also, you have to let the airline know beforehand, it can get complicated. I’m not supposed to fly without oxygen due to a heart/lung problem.
As I say tho this is in the UK be interesting to see any differences with other places.
Thanks Jude's. I'll definitely look into this well before I go , if I go. Sounds like an exhausting hassle I really don't need. We'll probably drive or take via rail. Thanks again.
A dvt ( Deep vein thrombosis) is different to a stroke, a stroke being arterial clotting. ( arterial clotting requires the higher INR, as well as two or more DVT’s.)
You seem to be having intermittent neurological symptoms, and I suspect that’s when your INR dips a little bit.
It could also be that you are experiencing a little bit of neuropathy, fron small vascular damage ( very very small) to you autonomic nervous system. ( the pins and needles, tingling sensations.) Do you have gastric paresis from time to time? Dysautonomia? I’d be curious... POTS?
It sounds to me ( remember I’m not a doctor) like the erratic INR may be resulting in tiny little bleeds and perhaps tiny little clotting. ( superficially.) This can leave you with tiny bruising also. Dips in INR can cause tiny little superficial clotting and swings too high might cause a little bleed.
It sounds like you should be evaluated when this happens. A guess on my part or yours is not a good idea. Your Hematologist should be the one to answer this question.
I would not advise a boost of heparin under these circumstances. I have experienced this often enough and had scans confirming my clotting. It also follows a vein- the vein will turn blue, then green/ yellow. ( after the bruising clears. ) it’s very close to the surface of the skin. It’s never a deep vein. Those clots ( DVT’s) don’t Bruise. They are too deep.
The eyes. I’m not sure. I think you need to see a neuro opthomologist, honestly. I myself have this specialist on board.
Neurologist at the very least. The migraines are classic problem but a real problem.
Sjögren’s could also cause redness but not this bruising unless you are rubbing aggressively in sleep without realizing. This could happen with Sjögren’s. It’s a remote possibility. The warfarin could aggravate vessels in eyes. I’ve not heard of this... I’m only thinking out loud.
Certainly you need to bring this up with a doctor who will listen to you.
A lot of what you have said makes sense and now I'm beginning to put some of the pieces together. Like I said I have had APS for at least 18 years and I'm only learning since joining this site a year ago, just how serious it is.
We are crazy busy running back and forth to the city trying to get our condo on the market. Have to make arrangements with the tenant, real estate agent and our schedules and it's hard to get on the same page with everyone's schedules. I will find the time though to look up some stuff you mentioned to see if I have those symptoms I.e.POTS??....and get back to you soon.
POTS ( postural orthastatic tachycardia syndrome - ) a part of the dysautonomia profile for APS that both dr Hughes and dr Jill Schofield are very interested in as it pertains to APS.
They lectured together in fact in Nashville Tennessee at the Dysautonomia international symposium in 2017 I think. There is a link to that Vimeo video on Dr Schofield’s website. ( Center for multi system disease.) it’s on east Lowry St in Denver Colorado.
I am a patient of Dr Schofield’s. I will try to find attach a link for you here soon- but if you get to it before I do you can google her clinic name. “ Center for multi system disease” with her name. It should come up.
Hi Jude’s. I’ve read more articles on APS and flying and there is a higher risk of trouble flying if a person has heart disease, pulmonary hypertension as well as OCPD. I have them all. I’ve come to a decision not to fly anymore. Too risky not to mention it sounds like a real hassle with oxygen tanks etc.. I am just so happy in my younger years 20-45 years old my husband was a military pilot for 25 years and we did a lot of travelling for 25 years all through Canada, United States and lived and travelled through Europe to every country for 14 months. Great memories. Travelling for us at this stage in our life is not a priority. Our family and friends will have to come to us now. Honestly, all the times I’ve been flying the last few years have been brutal. I thought I was having anxiety attacks even though I love flying. I’ve only learned from this site that it’s most likely my APS and PH that was causing my distress. Anyway I’m sorry to hear you have heart/lung issues as well. Not fun at all. You have a great weekend and stay healthy! Cheers Holly from Cold Canada
Like you I’ve given up flying I can’t bear the hassle of airports anymore. I did fly home from Italy last year, didn’t have a choice in that. I’ve reached the grumpy old woman stage, it’s great!! Doesn’t mean I don’t go on holiday these days I cruise, off to Russia, Finland, Copenhagen and more in the summer.
It’s also reassuring to know the medical staff on board are very good.
It’s all so easy, throw luggage on coach, get on coach, get off coach check in, find cabin and luggage all there ready. Very civilised.
Good Morning Jude's. So happy you like to cruise and the departure points are drivable. Unfortunately for us we'd have to fly to the USA departure points to get on a the cruise. Never heard of any in Canada within a days drive even....We do however take plenty of road trips. We love the flexibility and we love exploring so it works for us. At our age, we like to take it slow. We can't handle rushing, hassels or schedules. I guess you could say we've reached the old grumpy couple stage too.😂😂Have a wonderful day Jude's
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