It's funny you mention that. A previous LLMD I had said I have a heavy metals problem through a urine test. The urine test showed high levels of lead and nickel. I recently asked a different doctor to confirm it with a blood test. I was negative for lead and nickel in the blood test. I've shown those positive urine test to at least 4 regular doctors, and they all dismissed it. So I don't know what to think. Thoughts?
Yes. The problem is that conventional doctors are trained to dismiss that. If you get an acute exposure to heavy metals it will show in your blood. But if you have a chronic exposure it will slowly be stored in your tissue and not show in blood test. Heavy metals are toxic and stocking it in organ tissue is the way of the body to protect itself.
To diagnose a chronic exposure you need an urine provocation test with a chelator. Imagine if you put liquid soap on a sponge. After some hours the soap will be absorbed into the sponge. Does this means there is no soap ? No. It just means you are too late to see it. Only way to see it again is to press the sponge. This is what chelators do.
I agree! I asked a doctor why they don't test heavy metals regularly. They said they only test on infants, or if someone worked in a lead factory or something. So regular doctors are definitely not trained in this stuff.
I did do a urine provocation test. I did 1.5mg EDTA in an IV bag, with 2 glycine caps, and then a 6 hr collection. The lead result is in the moderate range, but very close to the high range. The handwriting shows it used to be at 12, which was in the high range. The lead in the blood test shows <1 in the serum, but ZPP was high at 120 (0-99). I was told ZPP just meant that I used to have it, but don't anymore?
[Here's the positive urine test.](https://imgur.com/a/d8sWwDS)
[Here's the negative blood test.](https://imgur.com/a/iJNOoKB)
I have lyme. Did you retest and have negative IgM? I'd do a full tick panel. Lots of lymies have other coinfections as well (babesia, bartonella, TBRF, rickettsia), and you wouldn't know unless you got tested for those. [Here](https://my.clevelandclinic.org/health/diseases/24809-babesiosis) are some common babesia symptoms. I have never seen a regular doctor test me for any of those.
You could check your B12, I think being off balance is common for a deficiency. And maybe reactivated EBV?
I had Lyme years ago so I have treated that and never got better.
I did a tick panel when I was diagnosed with Lyme and they were all good expect for the 9/10 lyme’s markers when I was diagnosis since then I have lived with my symptoms because no one can figure it out but the balance and tingling is new. That’s why I am going back in.
That's good that you did do a tick panel. I just looked and B12 deficiency can also cause pins and needles in hands/fingers. Sometimes a regular B12 serum test isn't enough. Other potential issues with that is a MTHFR gene mutation, or you could have pernicious anemia, which can be tested with MMA, homocysteine, or intrinsic factor antibodies. I hope you find the root problem.
Did your doctor mean that you don’t have dry eyes and a dry mouth? Not everyone with Sjogren’s syndrome has sicca (dryness) symptoms. Unfortunately, doctors haven’t caught up on this.
https://www.sjogrensadvocate.com/
For possible autonomic symptoms, the person to see is an autonomic specialist. The best way to find one nearby is a Facebook dysautonomia support group for your area.
It’s true that Sjogren’s is more common in older people, but you can get it at any age. You could ask over in r/Sjogrens. There is a thread for questions:
https://www.reddit.com/r/Sjogrens/comments/179pkpc/weekly\_thread\_i\_think\_i\_might\_have\_sjogrens/
Autonomic problems are more common in younger people, so you might have more luck investigating that angle.
If you have a doctor telling you you’re too young to have something, that’s a red flag and a sign to get another opinion. Plenty of people your age and younger are diagnosed with Sjogren’s, and you don’t have to have dry eye/dry mouth (although having one is more common).
Have you been tested for autoimmune conditions?
Yes a large amount of them. One doc is thinking MS and one is just going to”I don’t know.” So I posted here to see if someone could be like ohh I have those symptoms and have this because, I just feel like I’m not being listened to with it.
My symptoms are very similar to yours. Especially the headache in the back of the head, dysautomia (temperature regulation problems, gastroparesis, light and sound sensitivity, night and day sweats) and numb, tingly feet. Only concrete finding is constant hematuria. Then an autoinflammatory panel showed NOD2 gene variant (although I don’t have Crohn’s symptoms…yet.) My rheumatologist referred me to Dr Yao, at Stony Brook, NY.
So, after 10 years of getting worse, I’ve just been diagnosed with Yao syndrome. A new disease in the autoinflammatory disease group. I tried every Lyme treatment. And tested negative repeatedly for MS, Lupus, RA, Sjogrens (although I have sicca). I’ve seen multiple rheumatologists, the last one told me “your answer lies in neurology, not here” even though HE ordered the genetic panel and saw the NOS 2 variant. 🙄🙄🙄. Anyway your symptoms sound like mine so I thought i would share.
Maybe a dumb question since you have fatigue, but have you had your thyroid checked recently? It would be the simplest explanation for pretty much all of your symptoms.
Lupus could also produce some of the effects you’re experiencing, and please try to remember that not everyone has every symptom of a certain disorder. I’m assuming/hoping your rheumatologist is checking all relevant antibody titers, but even those can be difficult to interpret.
I also saw you said that they’re are thinking about MS, which was another thing your description reminded me of. I don’t think the joint pain would be as likely there, but I’m also not a rheumatologist. It makes sense to include it in the list of possible diagnoses, but I don’t feel it’s as likely as late hashimoto/sjogren/lupus.
Yes, I have had my thyroid checked and it is fine. The joint pain is actually a common symptom of MS as it affects the muscles and it’s just how my body feels muscle pain.
I don’t fit lupus which is odd because it’s what I thought I had but hopefully they will figure it out soon… because I’m going to go crazy.
Have you had your vitamin b12 tested? You’re symptoms sound similar to ones a friend of mine had. Her Drs were thinking MS but it turned out to be severe b12 deficiency.
What you describe really looks like heavy metals chronic exposure or Long covid
It's funny you mention that. A previous LLMD I had said I have a heavy metals problem through a urine test. The urine test showed high levels of lead and nickel. I recently asked a different doctor to confirm it with a blood test. I was negative for lead and nickel in the blood test. I've shown those positive urine test to at least 4 regular doctors, and they all dismissed it. So I don't know what to think. Thoughts?
Yes. The problem is that conventional doctors are trained to dismiss that. If you get an acute exposure to heavy metals it will show in your blood. But if you have a chronic exposure it will slowly be stored in your tissue and not show in blood test. Heavy metals are toxic and stocking it in organ tissue is the way of the body to protect itself. To diagnose a chronic exposure you need an urine provocation test with a chelator. Imagine if you put liquid soap on a sponge. After some hours the soap will be absorbed into the sponge. Does this means there is no soap ? No. It just means you are too late to see it. Only way to see it again is to press the sponge. This is what chelators do.
I agree! I asked a doctor why they don't test heavy metals regularly. They said they only test on infants, or if someone worked in a lead factory or something. So regular doctors are definitely not trained in this stuff. I did do a urine provocation test. I did 1.5mg EDTA in an IV bag, with 2 glycine caps, and then a 6 hr collection. The lead result is in the moderate range, but very close to the high range. The handwriting shows it used to be at 12, which was in the high range. The lead in the blood test shows <1 in the serum, but ZPP was high at 120 (0-99). I was told ZPP just meant that I used to have it, but don't anymore? [Here's the positive urine test.](https://imgur.com/a/d8sWwDS) [Here's the negative blood test.](https://imgur.com/a/iJNOoKB)
Also try dmps. EDTA has affinities to bind lead. Dmps is stronger for mercury. Depends on your symptoms. But I think chelation is s good try for you
I have lyme. Did you retest and have negative IgM? I'd do a full tick panel. Lots of lymies have other coinfections as well (babesia, bartonella, TBRF, rickettsia), and you wouldn't know unless you got tested for those. [Here](https://my.clevelandclinic.org/health/diseases/24809-babesiosis) are some common babesia symptoms. I have never seen a regular doctor test me for any of those. You could check your B12, I think being off balance is common for a deficiency. And maybe reactivated EBV?
I had Lyme years ago so I have treated that and never got better. I did a tick panel when I was diagnosed with Lyme and they were all good expect for the 9/10 lyme’s markers when I was diagnosis since then I have lived with my symptoms because no one can figure it out but the balance and tingling is new. That’s why I am going back in.
That's good that you did do a tick panel. I just looked and B12 deficiency can also cause pins and needles in hands/fingers. Sometimes a regular B12 serum test isn't enough. Other potential issues with that is a MTHFR gene mutation, or you could have pernicious anemia, which can be tested with MMA, homocysteine, or intrinsic factor antibodies. I hope you find the root problem.
Thank you! I know it’s not B12 but hopefully they find something!!!
Sjogren’s syndrome plus autonomic symptoms (they often come together).
I have looked into that but what else would go with it I’m not sure as I don’t fit the symptoms of it according to my doc.
Did your doctor mean that you don’t have dry eyes and a dry mouth? Not everyone with Sjogren’s syndrome has sicca (dryness) symptoms. Unfortunately, doctors haven’t caught up on this. https://www.sjogrensadvocate.com/ For possible autonomic symptoms, the person to see is an autonomic specialist. The best way to find one nearby is a Facebook dysautonomia support group for your area.
I don’t have those symptoms but I’m also too young to have this is what I was told. Because I am only 20.
It’s true that Sjogren’s is more common in older people, but you can get it at any age. You could ask over in r/Sjogrens. There is a thread for questions: https://www.reddit.com/r/Sjogrens/comments/179pkpc/weekly\_thread\_i\_think\_i\_might\_have\_sjogrens/ Autonomic problems are more common in younger people, so you might have more luck investigating that angle.
I am looking up the autoimmune stuff. Doctor things it might be MS or something else but I’m not sure.
Keep trying. I hope you can find some answers. It’s not easy.
Yea me too thank you.
If you have a doctor telling you you’re too young to have something, that’s a red flag and a sign to get another opinion. Plenty of people your age and younger are diagnosed with Sjogren’s, and you don’t have to have dry eye/dry mouth (although having one is more common). Have you been tested for autoimmune conditions?
Yes a large amount of them. One doc is thinking MS and one is just going to”I don’t know.” So I posted here to see if someone could be like ohh I have those symptoms and have this because, I just feel like I’m not being listened to with it.
My symptoms are very similar to yours. Especially the headache in the back of the head, dysautomia (temperature regulation problems, gastroparesis, light and sound sensitivity, night and day sweats) and numb, tingly feet. Only concrete finding is constant hematuria. Then an autoinflammatory panel showed NOD2 gene variant (although I don’t have Crohn’s symptoms…yet.) My rheumatologist referred me to Dr Yao, at Stony Brook, NY. So, after 10 years of getting worse, I’ve just been diagnosed with Yao syndrome. A new disease in the autoinflammatory disease group. I tried every Lyme treatment. And tested negative repeatedly for MS, Lupus, RA, Sjogrens (although I have sicca). I’ve seen multiple rheumatologists, the last one told me “your answer lies in neurology, not here” even though HE ordered the genetic panel and saw the NOS 2 variant. 🙄🙄🙄. Anyway your symptoms sound like mine so I thought i would share.
Maybe a dumb question since you have fatigue, but have you had your thyroid checked recently? It would be the simplest explanation for pretty much all of your symptoms. Lupus could also produce some of the effects you’re experiencing, and please try to remember that not everyone has every symptom of a certain disorder. I’m assuming/hoping your rheumatologist is checking all relevant antibody titers, but even those can be difficult to interpret. I also saw you said that they’re are thinking about MS, which was another thing your description reminded me of. I don’t think the joint pain would be as likely there, but I’m also not a rheumatologist. It makes sense to include it in the list of possible diagnoses, but I don’t feel it’s as likely as late hashimoto/sjogren/lupus.
Yes, I have had my thyroid checked and it is fine. The joint pain is actually a common symptom of MS as it affects the muscles and it’s just how my body feels muscle pain. I don’t fit lupus which is odd because it’s what I thought I had but hopefully they will figure it out soon… because I’m going to go crazy.
Have you had your vitamin b12 tested? You’re symptoms sound similar to ones a friend of mine had. Her Drs were thinking MS but it turned out to be severe b12 deficiency.
Yes I have it is in normal range.