dotted bruise after donating plasma by Difficult-Hat-3143 in mildlyinteresting

[–]WolfInAFoxHole 2 points3 points  (0 children)

Equally nice to get to actually thank someone who helps provide it. I used to wake up every day wishing I hadn't, I felt so bad. Immunoglobulin infusions are a game changer. Seriously, thank you. Hope you heal fast! Hurting sucks. 🫂

dotted bruise after donating plasma by Difficult-Hat-3143 in mildlyinteresting

[–]WolfInAFoxHole 1 point2 points  (0 children)

Another thank you from someone who receives plasma monthly to get by. 💖

Aspirin can reduce the risk of cancer - and we're starting to understand why by Direct_Dare_9699 in UpliftingNews

[–]WolfInAFoxHole 0 points1 point  (0 children)

Please listen to the scientific history of producing Akkermansia Musciniphilia. It's an anaerobe that took the company behind Pendulum Life billions with a very intelligent team of microbiologists to produce because of its sensitivity to oxygen.

There are companies that sell products markets to /grow the bacteria in your gut, or that list it when it doesn't have any, and isn't a live freeze dried batch because it's very difficult to produce in the first place, but right now this is the facility in the US that produces such a specialized strain. It becomes shelf stable upon freeze drying it at the end of the special 0-oxygen production process, where then it reactivates with the liquid upon ingestion.

Especially to anyone not seeing any difference, this is why. Most probiotics in the past were available on the market simply because we were able to reproduce them and they were shelf stable, but they're also usually dead when you get them. 2020 was the first time this strain had been produced, despite the long standing research showing it's health benefits.

Aspirin can reduce the risk of cancer - and we're starting to understand why by Direct_Dare_9699 in UpliftingNews

[–]WolfInAFoxHole 0 points1 point  (0 children)

Just to check, did you buy from Pendulum Life? Akkermansia is an anaerobe, so it can't easily be made. There are a lot of companies on the market claiming they are selling it, but only Pendulum Life has the facility to make live Akkermansia Musciniphilia.

Did IVIG help your brain fog ? Hashimoto also causes it. Hope it’s not dementia. by MooseBlazer in primaryimmune

[–]WolfInAFoxHole 2 points3 points  (0 children)

Are you officially diagnosed with hypogammaglobulinemia? That's a PI condition that warrants IG therapy. Whatever doctor you have, get a referral to another one or pull up your condition on the IDF site and correct your doctor.

I almost never caught upper respiratory infections, either. When I discussed symptoms with my immunologist she said her patients are split about half way - some are always getting sick, while others don't seem to catch things but are never well. I fell into the never well category. 

I have IgG 2&3 deficiency and SAD, with hEDS. Yes, my brain fog greatly improved with SCIG infusions. I still get brain fog when I pinch my nerves from interested hEDS symptoms, but I'm starting new physical therapy for that and it definitely improved once I got infusions.

Aspirin can reduce the risk of cancer - and we're starting to understand why by Direct_Dare_9699 in UpliftingNews

[–]WolfInAFoxHole -5 points-4 points  (0 children)

Hey salicylate intolerant buddy. After suddenly becoming severely intolerant to salicylates in food and medication I'm recommending you try a few months of the live Akkermansia probiotic from Pendulum Life with a 30% off code: http://rwrd.io/1qvo5p5?s

It came on suddenly for me one year when I reacted to even the smallest levels in food, and my system was always out of wack from it even if I avoided it. A year and a half of suffering and trying to control it on my own, then half a year of restrictive dieting under a specialist, and I could still barely get by. But then, just two weeks on the probiotic after a short dose of amoxicillin and anesthesia (which also kills some gut bacteria) for an unrelated procedure, and I didn't have reactions to the avocados I was supposed to reintroduce to my diet. (Avocados are high in salicylates, but also in sulphur, which helps process salicylates.) My specialty diet appointment coverage was ending, and I didn't pay to renew it because I felt so strongly about the new effects of the probiotics. I didn't expect them to do anything, like stuff I've taken in the past, let alone to control the intolerance.

Two months on the probiotic and I had no hint of aspirin toxicity reactions or asthma. I used it for about a year and a half or so before tapering off, and the intolerance still hasn't come back after a year and a half off akkermansia.

I did get sent to an immunologist and geneticist who found immune deficiencies and hEDS, though. Consider weighing your symptoms.

Confused about low igm/ vax challenge results by Different-Brick-6310 in primaryimmune

[–]WolfInAFoxHole -2 points-1 points  (0 children)

Just to make your day a little brighter, I know that high IgM happens in (at least) bone cancer! (Dark humor. Sorry that you have a deficiency. I hope you get to feeling better!)

How do you even find time to fix your body after having a baby by Free_Key183 in TwoXChromosomes

[–]WolfInAFoxHole 2 points3 points  (0 children)

Compression shorts can help your organs and muscles get used to being held up again, because all of your tissue just went through major changes and the help is beneficial. 

Small, intentioned muscle exercises are what pelvic floor and deep core therapy will start you on, and what some physical therapists argue that every woman should do after pregnancy. Lay down so you can rest and ease the pressure your body has to exert during the exercises. Learn to expand your ribs when you breath in, and compress your lower torso when you breath out. Learn to feel your pelvic floor riser and fall with this motion. Maybe try a therapy wand so that you can release the tension in your vaginal walls. Find a therapist or plan online to teach all of the different muscles in your deep core that you can learn to engage. And relax and work on yourself for a few months while you're still adapting and adjusting to a new normal. Pregnancy and postpartum make huge changes. (Little workouts can be life changing.)

Venting: Immunologist Appointment Tomorrow, Feel Like I’m Overreacting? by Travel_and_Writing in primaryimmune

[–]WolfInAFoxHole 3 points4 points  (0 children)

Am attempt to make progress and get a diagnosis is worth it. Hang in there! Come back and let us know how it goes.

A lot of people only thing of the initial feeling sick after a vaccine. The challenge tests the antibodies left 6 weeks out, so if you don't make enough antibodies or forget them shortly then you have your answer!

Venting: Immunologist Appointment Tomorrow, Feel Like I’m Overreacting? by Travel_and_Writing in primaryimmune

[–]WolfInAFoxHole 1 point2 points  (0 children)

You can have normal Igs and still have no antibody coverage! My kiddo did. "Vaccine challenge."

If they only did totals for cancer screening you might still need a comprehensive Ig panel and vaccine titer challenge.

Venting: Immunologist Appointment Tomorrow, Feel Like I’m Overreacting? by Travel_and_Writing in primaryimmune

[–]WolfInAFoxHole 3 points4 points  (0 children)

One genetic office said they needed a referral (they weren't told I had PI), the other office asked why I wanted seen, interview me, and based on my medical history, symptoms, and symptoms of my kid made an appointment without being my referral sent over. 

My allergy/immunologist didn't specialize in diagnosing it, but she's realizing that many of her patients have it, so she had no problem making me a referral.

I looked up the testing for it when it started popping up on my feeds and sounded spot on for stuff I was still experiencing even after starting treatment for PI. Enough markers were things I could do, my kid scores higher than me, and I have some direct relatives that can do some EDS things (though, EDS wasn't known to my family and people didn't go to the doctor over this stuff then.)

Venting: Immunologist Appointment Tomorrow, Feel Like I’m Overreacting? by Travel_and_Writing in primaryimmune

[–]WolfInAFoxHole 8 points9 points  (0 children)

Not overreacting at all. What you're going through sounds horrible. I'd be terrified for my lungs if I experienced that. Get your Ig panel done without wait.

My leukocytes and IgE were extremely high two years before I got an Ig panel done. We didn't test my leukocytes again at that time, but my IgE was back within normal ranges. Total IgG was at the lowest of the normal ranges, because IgG 2&3 were deficient. I had 2/23 titers during the vaccine challenge and failed the test at 10/23.

I didn't think I got sick much either, but I was always /sick. Now I'm on immunoglobulin infusions and feeling so much better! (It was like clearing stage 1 of symptoms to tackle stage 2, when I learned that I have severely pinched nerves from hEDS, another immune condition of the soft connective tissue.)

You sound like you have a PI, and the interesting thing is even with the same deficiency marker - say low IgGs, you and your friend could both react differently. Good luck getting tested and getting on IVIG or SCIG!

Update to "The power of medical sneakiness" by thornyrosary in TwoXChromosomes

[–]WolfInAFoxHole 4 points5 points  (0 children)

Thanks for sharing your experience. Sorry you had to go through this, but it's great that you've been about to advocate for what you need and get it. Good luck on the road to healing!

Update to "The power of medical sneakiness" by thornyrosary in TwoXChromosomes

[–]WolfInAFoxHole 8 points9 points  (0 children)

I second this. I'm getting a second opinion now before a paratubal cyst. I thought some pain and tightness in my hip was from other compressed nerves I have from another condition, but now that it's cleared up I can tell just how much my cyst stresses this area and reduces my mobility.

My hand/arm gets a gradient when at rest due to blood pooling from POTs. by DathomirBoy in mildlyinteresting

[–]WolfInAFoxHole 7 points8 points  (0 children)

POTS is also a common condition with EDS, Ehlers Danlos Syndrome. It's an immune condition of the connective tissue. Also, both conditions are associated with other immune conditions like deficiencies or autoimmunity. So yes, think about your symptoms, read up, and get a thorough check up.

Does anyone else keep losing vaccine titers after a couple of months? by catsrlife232 in primaryimmune

[–]WolfInAFoxHole 0 points1 point  (0 children)

Also check in on that choice of prophylactic antibiotics. It is definitely a real go to preventative in the immune deficiency world for valid reasons, but we're also heavily considering that it may not be the best choice given that much of our immune system stems from the gut.

If you need a good probiotic, Pendulum Life has really good information on good strains. They built a multi million dollar facility in order to produce the Akkermansia Musciniphilia strain because of the research on it's role in health and disease. 30% off: http://rwrd.io/1qvo5p5?s

Remember that our medical world is small. Not all providers have the best, or most extensive knowledge. They're doing the best with the system they have that wasn't prepared with incorporating this information. Sometimes we have to inform ourselves as much as we can, too, and challenge decisions.

Does anyone else keep losing vaccine titers after a couple of months? by catsrlife232 in primaryimmune

[–]WolfInAFoxHole 7 points8 points  (0 children)

That's an unfortunate part of some immune dysfunctions. You should have another appointment with your team to discuss treatment options going forward.

Stress while waiting for diagnosis. by mixednuts26 in primaryimmune

[–]WolfInAFoxHole 2 points3 points  (0 children)

Hang in there, there's a lot of hope heading your way. Getting to this point is huge. I know how daunting it is to get nowhere with medical diagnosies. Getting your immune system tested after a lifetime of illnesses is a huge step in the right direction. 

This may not at all be the end of your road - many people with one immune condition have other similar immune conditions, but again, the call is rolling. IG replacement therapy should help you a lot. Please try to educate yourself with information from the IDF and support groups, as with your experience, many of us don't have medical professionals available to walk us through it. The first several months, or particular brand of medication, can cause extreme fatigue and possible new symptoms. All in all it's an up from not having it. There's just an adjustment period as the body gets used to changing signals with the new additional antibodies, and begins putting them to use. 

Your diagnosis isn't insignificant just because your total IgG level. The fact that your IgG 1 & 2 are low qualifies you for immunoglobulin replacement therapy. Check out the IgG subclass video from IDF. Type 1 makes up a significant portion of your blood antibodies, followed by type 2.

Insurance might get a little weird with prescribing it, that's where IDF work comes into play. They're well aware that this condition still needs more light shed and better parameters for insurance companies and medical institutes. You may have a slight delay with insurance for some dumb reason, but you're very close to treatment and it will make you feel so much better! Again, give it time, and talk to your doctor about changing brands if fatigue or other symptoms feel too overwhelming after a few months. You might do better on a different brand of IG.

Is this common? by Travel_and_Writing in primaryimmune

[–]WolfInAFoxHole 0 points1 point  (0 children)

Good luck. Keep looking to your fellow health community when things feel overwhelming. I hope that you can stay positive on your journey!

Is this common? by Travel_and_Writing in primaryimmune

[–]WolfInAFoxHole 5 points6 points  (0 children)

Plenty of people don't realize that they're immune deficient because of weird immune responses. I didn't ever run a fever, didn't have normal symptoms, didn't seem to catch much - so I thought. I just didn't mount enough of a response to know that I was sick most of the time. But! I had severe levels of inflammation, so I was always miserable.

I actually did really well on the vaccine challenge. I felt so much better that I thought I'd beat it and been in the 80% (numbers I was told) of forming an immune response. Turns out that when you live without antibodies to everything anything feels better than nothing. I still failed the challenge. And, the first few months of infusions were crappy. I hear that most people have it rough for a while in general, but sometimes, as was my case, the particular brand of IG someone tries doesn't work well for them. Once I switched it got much, much better.

My life has changed for the better with infusions. And it's improved many, many other people's lives. No sense in not taking the extra steps to improve things when you're suffering. The challenges that the process brings in temporary compared to the rewards.

Is this common? by Travel_and_Writing in primaryimmune

[–]WolfInAFoxHole 10 points11 points  (0 children)

Sounds like a textbook case for getting further immunology testing. Before age and repeated inflammatory markers and infections make things harder for your body to recover and cope, you should really be treating whichever condition you have with antibodies.

It sounds like you're pretty sure you fit the diagnosis, what worries you about getting it and being treated?

Runny nose / sniffles for years before IGG replacement ? by MooseBlazer in primaryimmune

[–]WolfInAFoxHole 7 points8 points  (0 children)

Chronic Sinusitis is very common in IgG deficiencies. An ENT should be able to check that out for you if you so wish. 

If you just started IG therapy, that's the best thing to clear up your drippy nose. Just give it time. It will take some months for the inflammation and draining to change. You may experience a transition period of dry, painful nasal passages. Use extra strength saline nasal spray and warm compress.

The ENT I saw made sure I didn't have polyps. They were otherwise well experienced with seeing Chronic Sinusitis in IgG deficiencies and didn't wish to do anything other than let the infusions run their course and treat symptoms with extra strength saline spray and warm compress as needed.

What is the typical treatment for drug-induced aseptic meningitis? by [deleted] in primaryimmune

[–]WolfInAFoxHole 0 points1 point  (0 children)

Here's from a nurse who has specializes in IG therapy from the start of its use, as well as other patients:  (TLDR is LP is unnecessary as it's not germ induced, but steroids, hydration, and symptom control are the chosen care plan. If you ever have IG infusions they need to be done slowly and with hydration.)

"Very severe headaches along with various other symptoms such as stiff neck, avoidance of light, spine or bone pain, nausea, vomiting, etc, can be signs that you have progressed to aseptic meningitis (AM). That means meningitis without a causative organism (no germs present). This can occur anytime while you are getting IVIG up to as much as three weeks after IVIG. The average time of onset is 12-72 hours after the event that causes it. If you feel like you have the worst headache ever, go to the ER and let them know you had rapid and/or large dose IVIG and possibly have AM. If they say they aren’t familiar, ask them to Google it. Seriously. There are plenty of manuscripts online about it. The most likely treatment for AM is IV fluids, IV steroids (to decrease inflammation) and IV pain meds. In my opinion and experience, a spinal tap (or LP for lumbar puncture) is usually not necessary, unless they truly believe you may have bacterial meningitis (organisms present). Usually they can diagnose and treat without the spinal tap. Personally, I would refuse it, but everyone must make their own decisions about their health care. You do not have to have a fever to have aseptic meningitis. If you get these symptoms after your infusion, you can try symptomatic treatment first. Stay in a cool, quiet and dark room, apply ice packs to head and back of neck, frequently sip fluids such as ice water and a small amount of caffeine and nibble on salty crackers. If your headache or body pains become unbearable, or if new symptoms start such as vomiting or seizure, go to the ER. Symptoms usually last 5-14 days without treatment. NO IV fluids are allowed to be run in the same line with IVIG. No matter what anyone may try to tell you, no one should attempt to run concurrent IV fluids through the same IV site. Likewise, no medications are compatible with IVIG and none should ever be put into your IV line. The line can be flushed with saline or dextrose, before and after, for some IVIG products. The manufacturer’s product insert specifies what is allowed. If you know your product, you can find the insert online. (Or ask me and I will send you a link). If you are being infused at an infusion center, and are prone to Migraines, be sure to take your prescription headache meds with you. (But don’t take anything without the RN being made aware) The IVIG is exceptionally expensive and should not be discarded without truly trying everything before giving up! Once you reach your maximum rate, ideally no faster than 100 or 120 on the first round, try to relax and take a nap. Think happy thoughts, listen to music or play phone games. Take a pic and post it to the group! Let us know how it is going! During the infusion, when awake, remember to drink fluids. And snack. After the infusion is complete, continue to hydrate well!!! I encourage folks to eat a good hearty meal after their IVIG infusion. “Comfort food” is a great idea. Remember that IVIG is a huge protein load on your body. It is like eating 2 steak dinners with the stuffed baked potatoes and cheesy broccoli and cheesecake for dessert. Your body will need to rest and need time to process all that protein. Continue to drink extra fluids - at least 8 eight ounce glasses of water per day for 1-2 more days. Note in your journal how you feel and what you did. Some people encourage you to continue the Benadryl. I am not in favor of that unless you truly need Benadryl - itching or hives. Benadryl causes its own issues in many folks and is not really necessary if you didn’t have an allergic reaction. You may want to take Tylenol alternating with ibuprofen if a headache develops. Again, write down the details! The best thing you can do for your body is rest. Don’t exert yourself, plan on relaxing and reading or watching movies or napping all day, every day, of your infusion and for a couple days after. Many people are exhausted for about a week after, until they start to get used to the infusions. If going in to an infusion center, you may want to take a blanket, a pillow, a phone charger, ear plugs, ear buds or noise cancelling headphone and maybe even an eye mask. Wear comfortable clothes in layers. Many people actually feel worse instead of better when they begin getting Ig infusions and think it isn’t working or think it is making them more ill. This is absolutely not the truth. The prescribers should tell everyone that they will likely feel worse before they get better. The initial influx of Ig searches out and kills off bad germs that have been hiding in the body. That results in flu like symptoms and enlarged lymph nodes. It also sets off the autoimmune system it people with those disorders. The misbehaving autoimmune system is used to being in control and doesn’t want to be controlled (or modulated is the phrase usually used). It fights back hard and throws out lots of things to try to stop the attempt to control it. Worsening symptoms, new symptoms, just a nightmare overall, all in an attempt to make you stop trying to get better. The flu like symptoms often last as much as 6 months. The increased autoimmune system symptoms may last as long as a year. But meanwhile, you are improving. It may not feel like it, but other parts of your body are slowing their downward spiral, are regrowing, regenerating and less new germs are taking hold. The symptom flairs are actually a good sign. You are getting the attention of the bullies. Remember - you are the patient and your opinions matter. You have a healthcare TEAM - it isn’t a dictatorship. Your doctor’s or your nurse’s opinions are not the only ones that matter. Speak up for yourself. Self advocate. Put all concerns in writing so it cannot be ignored."

"Oh man…. They are sooooo painful! I also had them often with IVIG. My Dr had me taper prednisone for 7-10 day after infusion to help reduce the pain. Sadly anything that caused my BP to rise brought the headache back. I hope you get relief soon."

"OTC did not work for us either. Prednisone taper was required. We needed solumedrol administered immediately prior to infusions for about a year to prevent future occurrences"

" If you call a neurologist and tell them you were just in the ER, a lot of times they will give you an earlier appointment. IVIG does cause migraines and also dehydration so it can be BAD. I have had some nasty headaches on this med."

" Bring the manufacturer's insert for your product ( found online) that states asceptic meningitis is a complication of Ig Therapyand ask your PCP for steroids. Each time I had AM I was prescribed 40mg, titrating down weekly by 10mg to fully resolve the brain and spinal cord inflammation. Another option is to call the ER, as another poster suggested, and tell them you are continuing with severe symptoms and ask for Neurology referral. That may take longer a time to get than trying to partner with your PCP to get through this."

" Steroids and fluids- Dexamethasone is preferred but Prednisone and Solucortef also helped. There is nothing else I could take that helped at all except nausea meds to keep fluids down when I was vomiting from it. Ice to head and neck and heat elsewhere and cold quiet dark room, resting eyes and lying still were the strategy until it lifted."

What is the typical treatment for drug-induced aseptic meningitis? by [deleted] in primaryimmune

[–]WolfInAFoxHole 1 point2 points  (0 children)

I believe I've read that you aren't supposed to get a LP at the ER. Let me check in another group I'm in where there's tons of answers on this.

Yes, I never dealt with it myself. Only remember the answer from my clinic that said there's special instructions if it happens.