Joint Deterioration, Swelling Causing Anxiety

RW, how swollen? Could someone tell from looking at it?

I have an idea. You really should look into this.

You could have an immune complex disease. Basically, the way it works, is if there's an antigen youre being exposed to (could be anything from a pathogen to a drug your body doesnt like to a food youre eating to an airborn antigen) it will bind w/ the antibodies youre creating. This antigen-antibody pair creates an immune complex. The immune complex needs to be broken down by your complements. They trigger macrophages to swarm the area and ingest it. But if the immune complex lattice gets too big, they cant ingest it and the complements will trigger inflammation continually. This extra-large lattice, and the disease it creates, can be a function of being exposed to too much antigen, or creating the wrong antibodies to something harmless you shouldnt be making antibodies to.

The immune complexes, and therefore the inflammation they trigger, tends to get lodged in 2 places. The sinovial fluid of the joints, and the kidneys. This is very specific...this is where it goes, those two places exactly, and you've had problems with both. If you have an IC disease you'll likely have low C4 which we already know you have. In addition, your C1Q binding assay will be elevated. Your CH50 will probably be low. These will not show up on something like an Avise panel. You should ask to be tested for that. You may want to see an immunologist.

Post Edited (dcd2103) : 5/14/2020 12:14:12 PM (GMT-6)

Yes - I believe lyme and CO’s plus ebv could cause all that -

They can cause misdiagnoses of ALS, Parkinson’s, MS etc etc

Don’t underestimate these infections -
My non lyme literate Doc sent me to a neurologist to have Parkinson’s, MS and ALS ruled out after blood work didn’t explain my symptoms.

Symptoms from head to toe with nothing showing in labs - for 1 1/2 years to explain them.

Yes... I believe those you describe could be from lyme and CO’s.

Hey RW...maybe they plaquenil is helping, or else me changing my diet has helped...but that extreme flare is calming down. I’m 3w past my last IVIG infusion, so the allergy from the last infusion has died down, but I know that in a few weeks once the IVIG wears off I will get severe burning and inability to control circulation again. Talking w Dr K tomorrow about next step. Maybe try Rituxin, maybe Cellcept...maybe experiment with subcutaneous immunoglobulin. See what he says.

RA is a weird one because it’s both autoimmune and an immune complex disease (Type 3). Basically the body creates a specific antibody against the joints (hence autoimmune). Since you have an antibody and infinite antigen (the joints), it creates large numbers of immune complexes (the immune complex component) which need to be disposed of with inflammation. It’s confusing because most immune complex diseases aren’t autoimmune per say, and they can create similar symptoms to RA. The difference between RA and another immune complex disease is that with RA the antigen is the self, whereas w most other IC diseases the antigen is something foreign. But they both create damage through the same mechanism, immune complexes being deposited in joints and creating inflammation.

I have no idea if this is your issue. Would need to talk to a clinician who has experience with it. But it certainly could be and worth looking into. A simple c1q test would tell if you’re ok the right track.

Post Edited (dcd2103) : 5/14/2020 1:28:41 PM (GMT-6)

Dcd - what’s it mean if ch50 is high? Mine was flagged high but just said >60 with no value.

Post Edited (k07) : 5/14/2020 1:54:44 PM (GMT-6)

Just got results from test in from MDL, and now I have no idea what to think. The only one close to positive was Powassen Virus. The IgM for it was equivocal. it was at .84 with a range for equivocal from .80-1.10. I would guess that means it is basically negative? Plus that virus is so rare, I don't think it could be that.

Lyme, Bartonella, Babesia and a couple others all negative. Have no idea what to do or what to think. Maybe EBV is causing all symptoms along with autoimmune component. I would have bet a lot one of the others would have come out positive. Was hoping something would be to explain how badly I'm feeling right now.

Does anyone know if EBV can be a remaining symptom without Lyme? I'm about to panic, which is not hard to do these days.

Hang in there RW. Eventually this will all make sense. I’ll continue to read up on this and will let you know if I come across anything that may help you.

k07 - Same with you. We all have issues to deal with everyday. I am going to read more about the difference between C3, C4 and C3A and C4A.

WBF - I called Great Plains because I was thrown a little on how to order what was needed. The lady was not real friendly, for whatever reason, and I'm not real sensitive to rudeness. But she was. I forgot about Realtime and am about to look at it. Thanks for reminder. My basement, even though the whole living portion got new sheet rock a few years ago, will be the first area I check.

“ Girlie - Depends on insurance. As soon as my insurance approves of the MRI of my thoracic and cervical spine, I probably can have one done a few days later. But with COVID backing things up, it might take a little longer. I have to do an open MRI as I'm extremely claustrophobic. Not sure about how long in Canada.“

Well in 2013/2014 I would have had to wait - I think about 3 months - as we shared a mobile unit with the neighbouring city - if I wanted it at no charge. But if I paid - I’d get it within a couple weeks - which I did for my first mri.

After that, we got new hospitals - each one has their own mri machines - so I was able to get my next ones for free within 4-6 weeks.

I’ve had two (or is it three?) brain mris (one with contrast dye (yuck), two cervical spine, three or four thoracic, and one lumbar - from
2014to 2019.

We don’t have an open one or stand up mri machine which I’ve read is best if you’re looking for Chiari - closest and only one I think is in Vancouver - the largest city in the Province.

C3a and C4a are just cleaved/used C3 and C4. So if C4 is low due to usage, c4a should be high. This could happen in an autoimmune disease or an infection both, where lots of immune complexes are being made. So it would make sense that c4a could be elevated in an active/acute lyme infection. Could also be elevated in an autoimmune or other immune complex disease. My guess is that Lyme arthritis is caused by this exact mechanism.

The fact that your C4 is always low makes me think it’s genetic and not necessarily just due to usage. The two main autoimmune conditions (that are both type 3 hypersensitivity/immune complex diseases too) that are associated with genetically low components are lupus and RA as you know. But then again, an infection could in theory do it. Here’s a case of an EBV induced immune complex syndrome:

https:// https://pubmed.ncbi.nlm.nih.gov/9811388/

The c1q binding assay is the best test in this case. If it’s high we know a lot of immune complexes are being created. CH50, c3a and c4a would also be useful. I guess we could speculate all day but it makes sense to get an immunologists opinion I think.

Post Edited (dcd2103) : 5/14/2020 9:01:01 PM (GMT-6)

If it is RA, there are a lot of things they can do. Plenty of biologics. These things control the symptoms for those types of diseases much better than theyre able to do with neurological diseases like i have. I dont want to jump to any conclusions though, your bloodwork is negative and that would be very rare for RA. Like we discussed could be another immune complex disease that is behaving similar to RA. Could even be triggered by a pathogen like EBV. This line of inquiry is good though. I think think your best bet is to make an appointment w/ an immunologist and ask these questions, if it is immune related they are the best trained to spot it.

dcd - What type neurological disease do you have? Wondering what tests show it and how it makes you feel. I know you've mentioned the burning sensation. Hate it for you. What can you do to treat?

With ra, anywhere from 20% to 40% of seronegative people still have it. But I don't know if that includes many tests over and over. Seems something would show, other than complements.

I've been reading about the Medical Medium. Lot of it makes sense and some seems like reaching. But a lot of people have gotten better with it. A lot of it are things we already were aware of, such as diet. But I'm going to give it a try. about to go to store to load up and try to find a way to lower intake of animal protein while still getting enough calories.

Hoping you get some answers to your problems.

And Girlie - Your story about how long it took to get an MRI tells a lot about socialized medicine? Glad they have more MRIs now.

Uncertainty is a good way of describing the problem with Lyme. It creates so much. Seems no tests are for certain, no treatment is for certain, no symptoms indicate any for certain.....

Were you happy with Immunolytics' tests, k07?