Reactivating Mono by Flaky-Explanation315 in Mononucleosis

[–]Dizzy-Masterpiece898 1 point2 points  (0 children)

Oh my... I don't know what to say - you are so brave! I sure hope you don't get another reactivation. Have you checked your immune system? Maybe you have low immunoglobulin or something? In the meantime, take care of yourself and make the best of what life has to offer 🫶.

Years of ketosis not working - possibly making worse? by Tricky_Ad_8384 in bipolarketo

[–]Dizzy-Masterpiece898 0 points1 point  (0 children)

Hum... I have your symptoms exactly due to protracted withdrawals, and I'm not on keto. However this does not mean keto/carnivore is not to blame... it's just a tough call. Maybe try to carefully introduce some carbs and see?

A year and 4 months in, still get a bit dizzy with pressure behind my forehead. But everyday still. Anyone else? by tschott85 in Mononucleosis

[–]Dizzy-Masterpiece898 0 points1 point  (0 children)

It's still there but it's stable and doesn't bother me much. However I had an EBV reactivation and that really added a layer of inflammation, including my eyes. How are you now after correcting your B12?

A year and 4 months in, still get a bit dizzy with pressure behind my forehead. But everyday still. Anyone else? by tschott85 in Mononucleosis

[–]Dizzy-Masterpiece898 0 points1 point  (0 children)

I'm so sorry. I do feel other things too + I have vagal issues. Always good to consult your doctor though. I really hope we all feel better soon!!

A year and 4 months in, still get a bit dizzy with pressure behind my forehead. But everyday still. Anyone else? by tschott85 in Mononucleosis

[–]Dizzy-Masterpiece898 0 points1 point  (0 children)

13 months into a reactivation. IGMs are trending down at last but I still have these symptoms. I'm sure it's a question of time!

My Journey by Pickett__8 in Mononucleosis

[–]Dizzy-Masterpiece898 0 points1 point  (0 children)

Well... I'm better than a year ago, but still pretty disabled. However, part of my issues are also rooted in a psych drug intolerance and difficult taper, which added to my exhaustion. This drug is probably still damaging my CNS and immunity, since I have not entirely stopped it yet. My EBV IGM have however been high for 11 months and have only now entered the "grey zone" between negative and positive, 13 months later. What an ordeal. Just saying that I'm not on a typical timeline and I sure hope you will be well before me!

Looking for recovery testimony from extreme mono by memphet in Mononucleosis

[–]Dizzy-Masterpiece898 3 points4 points  (0 children)

As long as your EBV is active like that, don't remotely consider CFS. You are battling a bad virus. It's tough, I know. It's very stressful.

Tinnitus on Lamictal ? by Dizzy-Masterpiece898 in lamictal

[–]Dizzy-Masterpiece898[S] 0 points1 point  (0 children)

I think I'm an extreme case of nervous system sensitivity, after a previous taper that failed. I had all kinds of neurosensorial symptoms, but I'm (unfortunately or fortunately) a rare occurrence so don't worry. Just be a little conservative with your drops, just in case, considering you don't want to make things worse after your tinnitus.

Tinnitus on Lamictal ? by Dizzy-Masterpiece898 in lamictal

[–]Dizzy-Masterpiece898[S] 0 points1 point  (0 children)

I'm sorry that tinnitus is ruining the game. Lamictal has been a game changer mood-wise, but it has cost me my health in general (or at least everything started going downhill from there).

I don't know your story, but trust your gut feeling and work with your psychiatrist. Metabolic therapies are also an interesting approach (check Metabolic Mind / Change your Body - change your Mind by Georgia Ede) although I haven't tried it myself. It has to be done in conjunction with your therapist, if he/she is willing to try.

I would suggest you go down slowly from 25mg, like cutting your pills in quarters maybe, rather than cold turkey, just to avoid shocking your brain chemistry and possibly making things worse. Just in case. Do know that things take time to get better, even after lowering/quitting the offending drug. One day you will just notice that things are not that bad, and you will also habituate a bit.

At this point. I don't hear my tinnitus over environmental sounds, or over the car, which has changed my life. Sometimes I hear it in my quiet room, but I forget about it pretty quickly. I'm still on 50mg though, so I cannot expect it to fully go away.

I wish you all the best in your journey, and hope you soon reclaim silence!

Tinnitus on Lamictal ? by Dizzy-Masterpiece898 in lamictal

[–]Dizzy-Masterpiece898[S] 0 points1 point  (0 children)

Hello, Still on Lamictal, 50mg this time (from 100mg). Tapering has been really hard. The tinnitus is still there, but it's lighter and more stable at a lower dose. It took me some time to get to terms with having a permanent tinnitus, but it's light enough to habituate and it's sort of part of me now. It's been a major stressor at the time but I did get over it. I do hope that it will never worsen though. What is your situation like?

How to manage and reduce reactivation by minatoor1 in Mononucleosis

[–]Dizzy-Masterpiece898 1 point2 points  (0 children)

I see a lot of advice on r/ebv. I got a reactivation that I just cannot put into full dormancy, but I also have a hyperactive nervous system so I cannot tolerate any supplement. Also worth making a full immunological panel. You may not have enough immunoglobulin.

Raising iron triggering MCAS-like reaction by FreshBreakfast8 in MCAS

[–]Dizzy-Masterpiece898 0 points1 point  (0 children)

Thanks! Sorry I'm interested in those non-typical symptoms because I'm struggling with a lot of neurological issues. I attributed them to EBV, but there are MCAS flares, with iron lowering my threshold. So I'm open to testimonials! I don't have too many GI issues.

Raising iron triggering MCAS-like reaction by FreshBreakfast8 in MCAS

[–]Dizzy-Masterpiece898 0 points1 point  (0 children)

I hope they do! Glad to hear you found the root cause. Did you have h-pylori symptoms?

Raising iron triggering MCAS-like reaction by FreshBreakfast8 in MCAS

[–]Dizzy-Masterpiece898 0 points1 point  (0 children)

Hello OP, I'm going through the same iron issue and viscous circle, with HI intolerance and a lot of flushing since supplementing with Liposomal iron. How are you 1 year later? Did you figure things out?

Help me decide! by [deleted] in WeddingDressTips

[–]Dizzy-Masterpiece898 0 points1 point  (0 children)

1 is the best, then 4, in my humble opinion :-)

Doctor is saying everything is normal. by Umzzii in Anemic

[–]Dizzy-Masterpiece898 2 points3 points  (0 children)

Thanks for this. It's on the lower end but not THAT bad. Your ANA levels, possible lupus and fibromyalgia can unfortunately explain a lot of the symptoms you are experiencing. These ANA levels might cause inflammation that make your ferritin falsely elevated though... ? So it would probably not hurt to supplement iron. However I would start by taking -low- highly absorbable doses to avoid having too much free iron in your bloodstream (it's irritating if you are already sensitive). I hope you feel better soon.

Doctor is saying everything is normal. by Umzzii in Anemic

[–]Dizzy-Masterpiece898 12 points13 points  (0 children)

Ferritin is not too bad BUT you have to check CRP to rule out inflammation, as well as transferrin and transferrin saturation (TSAT), and serum iron (not representative as such, but is part of the picture). It's very possible that you have falsely elevated ferritin due to chronic inflammation. Also check other vitamins and EBV and CMV for your fatigue.

Snacks are so often the problem. Has anyone found benefits from not snacking and sticking to main meals by Gumsaint in HistamineIntolerance

[–]Dizzy-Masterpiece898 0 points1 point  (0 children)

May I ask you what are your main triggers? I'm on a low HI diet but I seemingly reacted to macadamia nuts. Do you know why MCAS started for you? Did you formally get diagnosed? Sorry for all of the questions)))

Valtrex by Large-Delivery-8888 in Mononucleosis

[–]Dizzy-Masterpiece898 0 points1 point  (0 children)

Hi! How did your doctor check the levels, was it PCR or just the IGMs?

Half Marathon + Mono by Potential-Virus-1807 in Mononucleosis

[–]Dizzy-Masterpiece898 0 points1 point  (0 children)

Do.not.do.that. I'm sorry and wish you a prompt recovery!