Joint Deterioration, Swelling Causing Anxiety

dcd - Sorry not to get back. Been in a real mood for the last-five days with all this. The stress of so many tests just wears one down. The waiting for results is the hardest part.

Have gotten most blood work back and most all has been results you would want to help rule out MM. Still waiting on the biggest one - full body bone scan I did Friday. That is the one I am most anxious to know about. The oncologist is very careful not to try to guess. Just the fact I'm being tested for MM says enough. If the bone scan is good, then that goes away. It just seems autoimmune related with pain, dizziness, fatigue, but I haven't tested positive for an autoimmune test and have taken, at least, 6 or 7.

If the scan is good, I would left wondering if this is still Lyme causing so much, along with EBV. The last three tests I've had for Lyme and co-infections have all been negative for everything (Igenex, Labcorp, MDL). So two of those are specialty labs and still negatives. I'm wondering if they could all be wrong. Symptoms are all ones you would see with Lyme and co-infections. I'll know Tuesday about the bone scan.

It's weird how I want to know results but at same time don't want to know. That's what years of this does. And for those who are reading this - what they are checking for is not common with Lyme. Do not want to scare anyone who is going through enough already.

My primary care wants to know about the current tests before having them checked. Usually I'd push for them but hoping to get this off my mind then move to next step. You think those different labs could all come up with same false negatives? I know Labcorp is not as reliable, but thought and had actually hoped MDL or IGENEX would show something.

Are you or were you really flexible? There’s a link with mast cell and ehlers danlos which can lead to joint stuff. Can be triggered by virus (ebv??), bacteria, mold. Mast cells can degrade collagen - hence joint stuff. I know I’ve told you my mom has something that is destroying all her joints (she’s also had the body scan u had). She has knees and hips replaced at 63. Neck, shoulders, spine, feet - everything is painful. I suspect bartonella bc we both had single lymph node swelling months apart when I was little (we had feral cats/fleas). However, I recall her easily doing the splits when I was younger so she may have a component of ehlers danlos. Here ANA & rheum factor are negative. We also grew up near the water (she still lives there) so mold could be trigger. Also has mercury fillings.

I’d do the mold test now too. I’ve used mycometrics or immunolytics. Both good but mycometrics, although more expensive, is more comprehensive.

That is some great information and thoughts, ko7. The article is really informative, also.

Your mentioning of virus is where my mind has been. The EBV virus seems to be pushing so much and causing so many problems. An hour ago, my temperature was 98.3. I felt it "happening" and checked it 10 minutes ago to find it at 99.2. It won't get any higher and will last anywhere from 2 -4 hours, then gone. Haven't been able to put a dent in EBV numbers for two years, and I may have had it before it was caught.

How much collagen/cartilage is gone with you? Have you had many imaging tests done to see extent? I really want to get the bone scan results in my hand as it will tell a very clear picture. There is pretty much no cartilage left in parts of cervical and lumbar has a lot of wear on it. Running for so many years may play a part in that with lumbar. The bone scan will show thoracic problems also.

Does your mom still have hope for her shoulders, spine and feet? Hope so for her. I'm with you about Bartonella. That's why I'm wondering if the Lyme tests all missed it. The arm pit deal with the ammonia smell (just in morning) leads me there. Another thing I've noticed is a lot of the pain I now experience seems to be coming from muscles near the bone or joints. The migraines have always been right side and start in my my lower neck, run up the muscle and into head. Been that way off and on for 16 years. Any areas of muscle inflammation feeling with you?

As much as I've seen about mast cells, I still don't quite understand it. And I would like to check for mold. I'm thrown how to order through Myometrics as I've looked at it based on Walking by Faith's suggestion. As mentioned, I'll spend what I have to in an effort to not live like this. Before it was mostly fatigue, anxiety, depression and some physical pain. Now the pain has taken the fore front in my entire spine, some shoulder pain, carpal tunnel, one swollen hand, tingling in both hands and painful toes.

Treating is made more complicated with kidney issues, though last 4 tests have been better (creatinine between 1.25 and 1.38 and GFR in high 50s or right at 60. Had a lot of 1.48-1.55 before). Even taking pain medicine is limited because of that, especially the migraine meds.

What, again, are your worst symptoms and what are you doing now?

Does it feel your migraine starts more in bone or muscle? And does it run to one side of your forehead? Finally, how often do you get them?

Spondyloarthritis is considered by some to be auto inflammatory and others feel autoimmune. There is a blood test for it, I believe. One time I read an old post where Astroman writes about it. Think he was negative in test for it.

And I can tell you my pain symptoms became much worse when I got stressed about the cancer possibility. The migraines really kicked up. Also, what once was back and some hand pain spread to shoulders, more mid-back and left knee/shin. I remember a couple of years ago having the shin pain, but it went away. So, to me, inflammation is playing a key role here. What throws me is having such a low ESR.

How bad does you neck hurt? If it is mild arthritis, it wouldn't hurt extremely bad. Just wondering as stress could be playing a role for you or some type inflammation? I also tested positive for Brucella about a year ago, and WBF has mentioned it to me. The hard part is knowing what is Lyme related and what is not. That's why I was actually hoping for a positive test for something in the Lyme arena.

It will be interesting to see what your blood test results indicate. Just getting some answers helps (as long as they are decent answers ).

For EBV, I have been taking monolaurin and L-Lysine. But the problem with L Lysine is I can only take about 500 mg a day because of kidneys. A few days ago I started taking something a naturopath suggested called Mono-tox by Physica. The first day I took four drops and felt off for a couple of hours. So I've backed down on it and will slowly build. Not sure if it was coincidence I felt bad after, but it seems reasonable to relate it to that.

Not sure what to take for Bart or if I even have it. I think there is a good chance I do and would like to go ahead and treat. I may go back to LLMD I have seen in Nashville to see what he thinks.

Also, the fever is common with brucella. Unfortunately though it does appear that the elisa yields a good amount of false positives. I did find this from cdc:

Cross-reactions and false-positive test results can occur in Brucella antibody tests. The primary immunodeterminant and virulence factor for Brucella species is the cell wall surface lipopolysaccharide, which is antigenically similar to the lipopolysaccharide of other gram-negative rods. False-positive Brucella antibody test results can be caused by cross-reactivity of antibodies to Escherichia coli O157, Francisella tularensis, Moraxella phenylpyruvica, Yersinia enterocolitica, and certain Salmonella species (9). Most cross-reacting antibodies are IgM (10), making interpretation of any IgM assay difficult because of false positivity. Therefore, results obtained using EIA should be confirmed by a reference method. ###

I’m negative for all those mentioned. But I think bart is gram negative rod. So is h. Pylori which i do have. So maybe its from that. Grrr....Why can’t testing be accurate!

I'm fairly thin but I think I have some fat left! I feel more like I've had a loss of collagen maybe even muscle.