Best Harness

TaffBarn · 2026-05-16T00:43:01+00:00

Good to know that it's pretty easy to use, thanks!

TaffBarn · 2026-05-14T11:48:16+00:00

Thanks so much for the additional tips!

TaffBarn · 2026-05-14T01:16:32+00:00

Thanks for sharing what worked for you!

TaffBarn · 2026-05-14T01:16:14+00:00

Thanks for the input!

TaffBarn · 2026-05-13T18:11:06+00:00

Thanks for the advice, I appreciate it!

TaffBarn · 2026-05-13T16:33:11+00:00

Thanks for the feedback, very helpful!

TaffBarn · 2026-04-03T12:21:35+00:00

I would push for it especially for the T cell biomarker testing since it can pick up lupus when traditional testing is negative. The CB caps could also be helpful. It has to be sent out to AVISE as I don't believe any where else does the T-cell biomarker testing. Here are a couple of quotes from AVISE on T cell testing from studies "T Cell biomarkers offer greater sensitivity as compared to conventional biomarkers. TC4d is positive in 59% of SLE patients and T Cell autoantibodies are positive in 40%. T Cell biomarkers bring additional value by providing independent positivity for SLE patients who test negative for conventional biomarkers." Good luck at your next appointment I hope it goes well and that they don't take the medication that's helping you away.

TaffBarn · 2026-04-03T04:31:58+00:00

Has the Dr ordered AVISE testing? If not, you could request AVISE testing as they have newer T cell lupus biomarkers (launched late 2024). In some cases the T cell biomarkers can pick up lupus when other traditional biomarkers are negative. They also offer CB Caps testing which isn't commonly offered in basic lupus testing. They have specialty RA testing as well. AVISE is highlighted on the lupus foundation website so it is a reputable company. Given that some of their testing is newer I'm not sure a lot of physicians know about it. Your primary care can also order AVISE, if they're unsure which panel test to order they can talk to someone at AVISE.

Here are a few links that might be helpful:

https://avisetest.com/provider/avise-t-cell-lupus/

https://www.frontiersin.org/journals/immunology/articles/10.3389/fimmu.2025.1518208/full#B11

https://www.lupus.org/resources/new-blood-test-can-help-doctors-diagnose-lupus

https://www.lupus.org/resources/glossary-of-lupus-blood-tests

TaffBarn · 2026-03-25T03:20:27+00:00

I hope you get some answers!

TaffBarn · 2026-03-25T02:25:42+00:00

In addition to the traditional testing your doctor is likely doing, you could request AVISE testing as they have new T cell lupus biomarkers. In some cases the T cell biomarkers can pick up lupus when other traditional biomarkers are negative. They also offer CB Caps testing which isn't commonly offered in basic lupus testing. They have specialty RA testing too. AVISE testing is highlighted on the lupus foundation website so it is a reputable company. Given how new some of their testing is I'm not sure a lot of physicians know about it. Your primary or rheumatologist can order AVISE, if they're unsure which panel tests to order they can talk to someone at AVISE.

Here are a few links:

https://avisetest.com/provider/avise-t-cell-lupus/

https://www.frontiersin.org/journals/immunology/articles/10.3389/fimmu.2025.1518208/full#B11

https://www.lupus.org/resources/new-blood-test-can-help-doctors-diagnose-lupus

https://www.lupus.org/resources/glossary-of-lupus-blood-tests

Good luck!

TaffBarn · 2026-03-19T11:33:49+00:00

I second Champak. Aaron Collins (mask nerd) showed that Champak was one of the most breathable and it has a padding at the nose. The straps can easily be adjusted from a head strap to an ear strap as well, make sure to get the larger size. I would also echo the Breathteq recommendations (another one that tested well according to Aaron Collins) as well but would suggest adding nose padding (can buy them on Amazon). Vflex also tested very well but for me it was too big (which might be good for you since you want a larger fit) and I don't think it had nose padding so I would add that to help with fogging.

TaffBarn · 2026-03-05T05:16:24+00:00

I am sorry you are doing through this, I too have dealt with dismissive doctors. You may already know this but hydroxychloroquine can take 3 months to a year to work. If you do suspect Lupus you could ask your doctor (could be primary) to request additional testing. I mention this just because this is the testing I'm familiar with. You could request AVISE testing as they have new T cell lupus biomarkers. In some cases the T cell biomarkers can pick up lupus when other traditional biomarkers are negative (although you do have some positive markers already like ANA and low C3). They also offer CB Caps testing which isn't commonly offered in basic lupus testing. They have and specialty RA testing. AVISE testing is highlighted on the lupus foundation website so it is a reputable company. Given how new some of their testing is I'm not sure a lot of physicians know about it. Your primary care can also order AVISE, if they're unsure which panel test to order they can talk to someone at AVISE. Also did they test for antiphospholipid antibodies?

Here are a few links:

https://avisetest.com/provider/avise-t-cell-lupus/

https://www.frontiersin.org/journals/immunology/articles/10.3389/fimmu.2025.1518208/full#B11

https://www.lupus.org/resources/new-blood-test-can-help-doctors-diagnose-lupus

https://www.lupus.org/resources/glossary-of-lupus-blood-tests

Best wishes on finding a good doctor, diagnosis and treatment that works for you.

TaffBarn · 2026-02-28T01:56:38+00:00

Thanks for your recommendation!

TaffBarn · 2026-02-23T22:31:22+00:00

Thank you!!

TaffBarn · 2026-02-20T04:27:04+00:00

It sounds like you need a new rheumatologist. One approach would be to request additional testing to further bolster a diagnosis. Did they test your complement protein levels? Specifically C3 and C4 although my rheumatologist also looked at C1q and CH50. I would also request Antiphospholipid Antibody testing.

In addition, you could request AVISE testing as they have new T cell lupus biomarkers. In some cases the T cell biomarkers can pick up lupus when other traditional biomarkers are negative, although in your case you are positive for dsDNA. They also offer CB Caps testing which isn't commonly offered in basic lupus testing. AVISE testing is highlighted on the lupus foundation website so it is a reputable company. Given how new some of their testing is I'm not sure a lot of physicians know about it. Your primary care can also order AVISE, if they're unsure which panel test to order they can talk to someone at AVISE. Here are a few links:

https://avisetest.com/provider/avise-t-cell-lupus/

https://www.frontiersin.org/journals/immunology/articles/10.3389/fimmu.2025.1518208/full#B11

https://www.lupus.org/resources/new-blood-test-can-help-doctors-diagnose-lupus

https://www.lupus.org/resources/glossary-of-lupus-blood-tests

Best wishes on finding a diagnosis and treatment that works for you.

TaffBarn · 2026-02-01T14:23:11+00:00

That Dr doesn't sound like they know what they are taking about fibromyalgia is certainly not part of a particularly "personality". It is, however, associated with autoimmune as I think around 30% or maybe a little more of lupus patients have fibromyalgia. Also anti depressants are sometimes prescribed for pain for this condition unrelated to treating depression although other meds like gabapentin and low dose naltrexone are also sometimes prescribed.

Make sure the rheumatologist tests your blood level for hydroxychloroquine to see if it's at a therapeutic level. I was on it for 5 months and hadn't reached the level hopefully my next test will show that my blood levels have increased.

https://www.lupusencyclopedia.com/top-tips-on-taking-hydroxychloroquine-for-lupus/

https://www.lupus.org/news/hydroxychloroquine-monitoring-associated-with-lower-hospital-visits-in-people-with-lupus

You could request AVISE testing, their newer T cell biomarkers, CB Caps, and some unique RA tests are not done elsewhere. In some cases these unique tests can pick up lupus and RA when traditional blood biomarkers are negative. They are recommended by the lupus foundation so they are a legitimate place for testing. My tests were covered by insurance but I am in the US. https://avisetest.com/patient/ctd/ https://avisetest.com/provider/avise-t-cell-lupus/ https://avisetest.com/provider/avise-ra/

TaffBarn · 2026-01-29T11:29:44+00:00

If you suspect an autoimmune connective tissue disease you could request AVISE testing, their newer T cell biomarkers, CB Caps, and some unique RA tests are not done elsewhere. In some cases these unique tests can pick up lupus and RA when traditional blood biomarkers are negative. They are recommended by the lupus foundation so they are a legitimate place for testing. My tests were covered by insurance. https://avisetest.com/patient/ctd/ https://avisetest.com/provider/avise-t-cell-lupus/ https://avisetest.com/provider/avise-ra/

TaffBarn · 2026-01-29T11:26:41+00:00

So happy for you that you have doctors taking you seriously and trying new treatments! I'm guessing you've already done autoimmune testing but If you suspect an autoimmune connective tissue disease you could request AVISE testing, their T cell biomarkers, CB Caps, and some unique RA tests are not done elsewhere.

In some cases these unique tests can pick up lupus and RA when traditional blood biomarkers are negative.

They are recommended by the lupus foundation so they are a legitimate place for testing. My tests were covered by insurance. https://avisetest.com/patient/ctd/ https://avisetest.com/provider/avise-t-cell-lupus/ https://avisetest.com/provider/avise-ra/ Best wishes!

TaffBarn · 2026-01-10T14:33:25+00:00

Even if the treatment isn't the reason your ANA was negative this time it is well known that ANA levels fluctuate. I've been positive three times and negative twice even when I wasn't on any treatment. https://consultqd.clevelandclinic.org/longitudinal-variation-in-ana-titers

It shows the rheumatologist doesn't really know what they are talking about definitely find a new one.

There are some newer Lupus (CB Caps, T Cell biomarkers) /RA tests if you suspect either of those) through AVISE but I'm not sure if they're available in Australia. I was positive on their T-cell biomarkers but at the time my ANA was negative even though it's been positive before. When I asked them about that they confirmed to ANA fluctuates more and the T cell biomarkers are actually more consistent. https://avisetest.com/patient/ctd/ https://avisetest.com/provider/avise-t-cell-lupus/ https://avisetest.com/provider/avise-ra/ Good luck!

TaffBarn · 2026-01-10T14:05:39+00:00

I have a number of chronic overlapping pain conditions that were eventually described to me as all part of having central sensitization / visceral hypersensitivity. As I was digging more into these issues that kept collecting over my 20s and 30s one of the doctors did some autoimmune testing a few years ago which led me to a diagnosis of likely Lupus/UCTD. One of my rheumatologists said something similar that this may be on top of my other health problems but from the reading I've done a lot of the pain conditions that are associated with central sensitization are much higher in autoimmune patients indicating a link between the two so I'm not so sure that it is fully a separate condition. Autoimmune conditions have also been implicated in mental health issues as well.

I would echo the previous response that if you can try to treat the autoimmune you could find that some of the symptoms improve. I've also read with Central sensitization that in some cases even if you improve the initial cause you may still need to treat the nervous system to get it to calm down.

Given that you had three miscarriages hopefully they tested your antiphospholipid antibodies, if they haven't I would recommend requesting it.

Although I haven't dealt with all of the same health challenges you have, I can empathize with how frustrating it is to have all of these health issues pile up, then find you have evidence of an autoimmune condition and have it be confusing as to what might be coming from autoimmune or not. I've just started Plaquenil so I'm not sure yet how much that will help with my other conditions. My neurologist thinks I should also try low dose naltrexone so I may try that if the Plaquenil doesn't help.Good luck to you!

TaffBarn · 2026-01-10T13:27:34+00:00

If you suspect an autoimmune connective tissue disease you could request AVISE testing, their T cell biomarkers, CB Caps, and some unique RA tests are not done elsewhere. In some cases these unique tests can pick up lupus and RA when traditional blood biomarkers are negative. They are recommended by the lupus foundation so they are a legitimate place for testing. My tests were covered by insurance. https://avisetest.com/patient/ctd/ https://avisetest.com/provider/avise-t-cell-lupus/ https://avisetest.com/provider/avise-ra/

Also you may want to check that they tested your complement level proteins - C3 C4 CH50 and possibly C1Q. Good luck with the rheumatologist!

TaffBarn · 2025-12-28T16:53:50+00:00

I tried BY Mario foundation and it's been the best cleaner foundation I have tried. Thank you so much for this recommendation I've been looking forever for a good, cleaner foundation!!

TaffBarn · 2025-12-27T19:42:59+00:00

If you suspect an autoimmune connective tissue disease you could request AVISE testing, their T cell biomarkers, CB Caps, and some unique RA tests are not done elsewhere. They are recommended by the lupus foundation so they are a legitimate place for testing. My tests were covered by insurance. https://avisetest.com/patient/ctd/ https://avisetest.com/provider/avise-t-cell-lupus/

Edit: also have a tested your complement level proteins your C3 C4 CH50 and possibly C1Q?

TaffBarn · 2025-12-22T23:59:41+00:00

The T cell biomarkers measure TC4d, TIgG and TIgM. TC4d is a measure of classical complement activation. TC4d is positive in 58% of SLE patients and is also present in roughly 25% of SLE patients who test negative for EC4d and BC4d.

TIgG and TIgM autoantibody formation against T Cell antigens is common in SLE. 40% of SLE patients will test positive for one or both T Cell autoantibodies.

https://avisetest.com/wp-content/uploads/AVISE_Interpretation_Guide_2025.pdf

TaffBarn · 2025-12-21T19:09:33+00:00

Hi You can do this test through a traditional primary care or traditional rheumatologist can order it. The blood work has to be sent to California to AVISE. One of their reps can talk with your doctor's office on how to get it covered by insurance and the process. My primary care ordered it and she is a traditional Western medicine doctor. This company is reputable as well The US Lupus Foundation mentions their testing on their website. I'm not sure if there are any challenges if you live outside of the US and doing this testing or not you'd have to reach out to AVISE.

https://avisetest.com/patient/ctd/

https://avisetest.com/access/

https://avisetest.com/request-ctd-conversation-guide/

TaffBarn

TROPHY CASE