My brain, my mast cells, visit to Granot etc

Hi guys,

Thanks to everyone whose been checking in with my regarding my mystery illness and its impact on my stupid migraine brain. Thought I’d give you all an update.

Basically I’m STILL undiagnosed but the general consensus still seems to be that I have some sort of rare mast cell disease. It’s not something you want to have. As well as frequent facial flushing, wheezing, fatigue, diarrhea, cramps and feeling tired and sick there’s also the constant risk of anaphylaxis. On the weekend my face was blood red/purple ALL over (nose, eyelids, the works) for about an hour so badly that I actually thought I might have to go to hospital again. There are many common triggers, for me the most obvious one appears to be stress (the most minor thing sets my face to ‘red’ or even ‘purple’) and heat. Common medications that I can’t take until further notice (or possibly ever again) include aspirin, all anti inflammatories, anti biotics, opiods and probably others I can’t recall.

AS WELL I’m getting a lot of vertigo again. Not the spinning kind but the floor is moving, I’m lurching (when standing I have to spread my feet apart in a braced position and clutch a table for support) and have that horrible falling feeling. It’s not disabling (I’ve had it so often before I’m probably getting used to it) but geez I’d really like it to stop.

Dr Granot is pissed off that the Periactin isn’t working. He sent me for an ECG to check my heart could take his maximum dosage of 20 mg (it can, the ticker appears fine) so I’m starting 4 mg in the morning with the rest at night. If that doesn’t work he’ll suggest dumping it and trying Topamax (if the hematologist and immunologist allow it). He’s also sending me for an MRI but only if the hematologist allows it (the dye contrast is also a trigger for mast cell diseases) to check there’s no mast cell related tumour up there.

In a nutshell, I’m over it. I want a diagnosis and I want to get treated. I also want to know what the implications are. As someone who loves to travel overseas, off the beaten track and on my own I want to know what the risks are - am I likely to go into anaphylactic shock somewhere and die, for example.

Anwyays, thanks for reading and thanks for all the kind words that have come my way via PM etc, it really does mean a lot.

I had not seen your other posts. My heart sank reading this. You’re in my thoughts. Ill try to write more later when can sit at computer

Victoria,

Since I read your post this morning I cannot stop thinking about you. I do not want to overstep or overwhelm this section wtih Lyme. But, weighing the pros and cons in stating this, I decided to share. I just couldn’t not share in good conscience and as a friend. I also verified with my husband before stating something false as I would never want to do that.

I have read a lot these months about Lyme and mast cell and Anaphylaxis. I have learned that the Lyme bug can cause activation of many different cells in the inflammtory process of the body, including cells which play a role in Anaphylaxis.
Here is an article and there is a lot info out there should you wish to read. ncbi.nlm.nih.gov/pmc/articles/PMC96436/

I also wanted to note that optic neuritis (which I recall is in your history) is sometimes caused by infection, and there is much written on this as well should you want to read about

I do not think that everyone that is dizzy has Lyme. but, when things keep on popping up it is likely that they are due to the same underlying factor a lot of the time. At least that is the reason why I went from having no problems except 1 migraines every 1-2 years, to so many symptoms now. I didn’t coincidentally develop all these symptoms.

I will not say another word about this unless you want me to, and if you do not want me to, I understand and am here for you. I hate that you are going through this. And. I don’t wish your answer to be Lyme as it’s an awful diagnosis, but better than not knowing.

wishing you well,
Lisa

Hi Victoria,

I’ve been quietly following your threads & posts since you first went into anaphylactic shock some months ago.
I am so sorry you’ve had to live with so many uncertainties while awaiting for the results of all your tests … I can’t even imagine how much extra stress and
anxiety this has put on your day to day life.

I just wanted to let you know, I am thinking of you.

Even though I don’t often ‘post’ on here, I am here most days reading and keeping informed about all the wonderful people on this forum.

I have suffered with VM for over 20 years but was only correctly diagnosed just over a year ago and also diagnosed with Bilateral BPPV (with nystagmus).
Finding this forum is the only thing that has kept me half sane!

I wish you all the best Vic and I’ll keep following your progress. My thoughts will continue to be with you.

Take care.

Annie x

Geez Louise, Victoria. What misery!

Consider your hand held, long-distance.

Thanks LiSA, Annie and David for your replies and lovely words of support - they are very much appreciated.

Lisa,

I really appreciate your thoughtful input and continue to value your kind and unwavering support (over many years :slight_smile: ) but confess I’m not really sure what you are suggesting in your post above - a) that Lyme may be the cause of my symptoms or b) that Lyme may have triggered mast cell degranulation or c) that Lyme is the cause of Mast Cell Activation Syndrome?

Is it your contention that Lyme can cause these persistent symptoms that I have had for several months now, i.e. wheezing, flushing, persistently elevated serum tryptase etc?

From the reading I have done so far and from what the hematologist has told me Mast Cell Activation Syndrome, like Systemic Mastocytosis is caused by a genetic mutation. Are you suggesting that that is not the case and that Lyme infection instead is the cause? Alternatively are you suggesting that Lyme can cause the genetic mutation?

I did read the study you posted a link to and it seems to be suggesting only that in a laboratory environment the mast cells of mice can be activated by the Lyme bug. I’m not sure that there is sufficient there to suggest or make the jump that Lyme causes MCAS or any of the other scenarios/questions I posed above.

The other problem is - if it turned out I do have Lyme how would I treat it? Antibiotics are a known trigger for people with mast cell disorders. I had taken a Doxycyline tablet the day I had anaphylaxis. It is still considered a prime suspect for what triggered the attack. Not an experience I’m keen to repeat as I’m sure you can imagine!

Interested to read your thoughts.

We don’t “know” each other since I am new here, but I have read your posts and my heart goes out to you. I truly hope you get some answers soon and know what you are fighting. It’s horrible not knowing. Best wishes to you.

— Begin quote from "DizzyForLife?"

We don’t “know” each other since I am new here, but I have read your posts and my heart goes out to you. I truly hope you get some answers soon and know what you are fighting. It’s horrible not knowing. Best wishes to you.

— End quote

Thank you! :slight_smile:

Victoria
Can’t really begin to imagine what you are going through even with the horror description of your face and body, let alone the ongoing possibility of another anaphylaxis attack, plus the dizziness and rocking you are dealing with. It all seems to be dragging on so long for you - is there actually a reason for the hold up in giving you a diagnosis, eg. tests & more tests or is it that the doctors have run out of ideas on what to actually test for?
You must spend half your life visiting specialists! At least there are plenty of them in Sydney so I hope there are some who can get you through this nightmare. It’s a double blow to have the vertigo as well - not really surprising with all the stress you are going through. Really hope the increase in Periactin works - you have enough to cope with without Topamax ‘start up’ (if it’s allowed!).
Thank’s for keeping us up to date with what’s happening, Victoria. I’ve always admired your ‘get up and go’ outlook on life - not letting anything hold you back so I’m positive you will one day, when you are out in the wilds somewhere enjoying life again, recall these days struggling with the ‘mast cells’ and think ‘well I beat them’!! It might take a while but you’ll get there.
Barb

Gee I feel so guilty for being away so long and having no idea until I read this what you’ve been going through :cry: I’m so sorry to read all this - Christ does this sh*t never end?

Vic am always here for you even if I’m not present here - you know you can reach me. I really hope they get to the bottom of this and Granot has some other ideas up his sleeve.

I’m in Sydders for a week in Dec - see you then xx

Really sorry to hear about this, it sounds awful. Hoping you get to the bottom of it all soon x

Oh my Vic! What a nightmare! I’ve tried googling a bit to find out what you’re up against there but it’s all so complicated and seems to depend on exactly which type of mast cell disease you have. I too am a bit puzzled at the time it’s taking to pin this down but it must be truly awful for you. Like you say, you just want to know and be able to get on with your life.

Hope they come up with a precise, definitive diagnosis soon along with a treatment plan. If only good wishes could be turned into a good outcome, you’d be well and truly on your way to recovery by now because we all desperately want to see you well and off on your treks again.

You’ve always come across as strong, spirited, resolute, grounded - all qualities that will stand you in good stead in the coming weeks I’m sure. Hope the uncertainty ends soon…

Brenda

Hey Vic

So sorry to read your post.

Seriously, sometimes it’s never seems to friggen’ end!!

I am just so sorry that you are having such a tough time, You are such a trooper and seriously deserve a break.

I’m glad Granot sent you for the ECG and is going to take a bullish approach with the periactin before simply ditching it and trying something else. At least you can give it one last shot at a higher dose. If it doesn’t work, at least you have your next weapon ready to fire!

You really are amazing though. I see how much support you provide everyone on this board and at the same time you are going through all of this.

We are all behind you cheering you on. Your spirit is an inspiration. You will beat whatever is going on I am sure of it. Keep us posted. xx

Hi Vic,

I read over your questions a few times and they are such good questions and I honestly don’t know the answers. I haven’t delved into understanding the mechanisms of mast cells. So, I cannot speak much to it more specifically. but, I do know that Lyme CAN cause mast cell activation. and, have also read a lot about Lyme and optic neuriitis. Just in my opinion, I would in the least just read about these condtions and Lyme and see what you think. I do believe that Tick-Borne illnesses can most certainly be the underlying cause of all these symptoms. I’m not sure about the abx. I have read about people treating infection with abx, while also addressing the mast cell with for ex, Ketotifen.

All my best to you!

Lisa

Wow. I’m so humbled by all your lovely comments. I can’t tell you what a comfort it is to have such support. The chronic illness community does good empathy! :slight_smile:

I think the reason the diagnosis is taking so long is because of the rarity (and getting rarer with each thing ruled out) of what I likely have. First of all we went down the allergy path but drew a blank. Then the blood tests continued to rule out various things and monitor the progress of tryptase levels. Then when it looked like systemic mastocytosis there were more tests, many of which are quite complicated and the results take a long time to come through. Now that it’s not systemic mastocytosis it seems they are running out of ideas, however, the consensus does seem to be that it’s some type of mast cell disease. From my understanding the treatments are all quite similar and are about symptom control (there is no cure) so I really think we could start with treatment ASAP. I’m getting pretty fed up, especially when having a bad day (like I am today - cramps, feeling very off and very light headed). When I have my appointment with the hematologist next week if there’s still no diagnosis I’m going to push very hard for treatment anyway. I’m fed up and I think this endless waiting is unfair if there are some meds which could help with the symptoms. :frowning:

Lisa I will ask about Lyme but I do think it’s a very long shot. I’ve had one tick bite in my life, in Australia. Lyme doesn’t officially exist here and even if that’s not true it’s not common or it would be all over the front page. From the reading I’ve done the Lyme/optic neuritis connection is at most considered unusual and rare and is controversial. Will keep you posted.

Sorry to hear about your condition and extra suffering Victoria. As if this stuff isn’t annoying enough! I hope you get the treatment soon and all the answers that you need.

sounds good, Vic. yes, please keep us posted.

I am glad that you’ll ask your doctor (as I think it’s important to at least rule/out), but please be aware that majority of doctors are not properly educated in Lyme Disease - My husband was one of them. Most people, including myself, do not even recall a tick bite. In a more perfect world, we would be warned and it would make the front pages. However, this doesn’t occur even where I live (near Lyme, Connecticut). I correspond to people daily from all over the world who have Lyme, many that live in Austrailia.

I promise I will not write again in this thread about Lyme, but if you do decide to rule out further, I am here for you. and, if you don’t, I’m here for you too, of course. Just get better… I’m terribly sorry that this occurred as I know you were doing so well. and, one thing I know for certain, that no matter what the cause you WILL beat this. Your fighting spirit is like no other.

Thinking of you

Hi Vic,

really sorry you are having such a miserable time. It’s so unfair getting this on top of your MAV, and of course feeling ill with anything else tends to make MAV worse. I won’t write too much here as I owe you an email - which I am going to do right away - but I just wanted to know I am thinking of you and hoping you soon get a formal diagnosis so you can start treatment of the symptoms. Take care. xx

— Begin quote from "beechleaf"

Hi Vic,

really sorry you are having such a miserable time. It’s so unfair getting this on top of your MAV, and of course feeling ill with anything else tends to make MAV worse. I won’t write too much here as I owe you an email - which I am going to do right away - but I just wanted to know I am thinking of you and hoping you soon get a formal diagnosis so you can start treatment of the symptoms. Take care. xx

— End quote

Thank you! :slight_smile:

Seeing the hematologist tomorrow. Will be hoping for an answer and treatment.

I saw my mother yesterday. She thinks it’s menopause :roll:

Good luck!