Blood levels high

[Chakra111]

I was recently diagnosed with IgA Vasculitis getting my bloods checked for my b12 levels and again it is still showing high for the infection tests.I'm not seeing dr until 25th. Don't know if I can wait so long.

Goggling this and frightening the life out myself at high infection levels in bloods.

I have no one to really tell how worried I am without worrying them (family) 😔😔🥹😩😓😓

[PMRpro]

For a start - stop googling!!! All that ever does is produce worst cast scenarios and you need to have a reasonable background knowledge to be able to sift the wheat from the chaff. There is a good reason doctors sneer at Dr Google. He is very useful to find groups like this one where the discussion is sensible and founded - but the FB equivalent groups really are dreadful. I have a different vasculitis and our forum on HU is very tightly moderated with lots of science background explained in simple terms and no "woo" but the FB groups are full of old wives tales and doom and gloom,

And don't think of the ESR and CRP as INFECTION tests - they are indicators of INFLAMMATION which is part of the vasculitis - inflamed blood vessels. They are very non-specific tests and all sorts of things will raise them - including stress! There is no quick fix and another couple of weeks is understandable with the state of the NHS at present. Is that an appointment with the specialist or your GP? Either way, if it was really urgent, they would have brought it forward.

Keep your pecker up!!!

[Chakra111 in reply to PMRpro]

Thank you for your reply, it helped. Trying to keep mind off things.

The b12 loading dose I had finished in Oct but iv had strange extreme fatigue I don't understand it. Eyes rolling and severely affected by light.

[PMRpro in reply to Chakra111]

Vasculitis is a severe systemic illness, whatever sort it is, and it can make you feel really strange, even after treatment is started, until things start to be got under control. The B12 loading dose may not be a miracle first time round, some people need repeats. It is easy for us to say, we know, but you have to be patient, It will improve - but not overnight.

[Chakra111 in reply to PMRpro]

Thank you. I'm trying to be patient.I'm not getting any treatment at the moment for the IgAV. I am going for a kidney scan, bloods show kidneys ok at mo.

[zoe69 Administrator Volunteer Vasculitis UK]

PMRpro is absolutely right - stop Googling.

Here's some information for your type of vasculitis: vasculitis.org.uk/about-vas...

vasculitis.org.uk/ has a lot of information and you can call the helpline for a chat.

I am not sure what you mean by infection tests, propably your inflammation markers. Depending on the treatment it can take weeks to see a difference. Most importantly, do you feel better in yourself?

[Chakra111 in reply to zoe69]

Hi thanks for your reply.Im not feeling better yet, the vasc seems to have calmed..rash anyway.

But have had unusual extreme fatigue, eyes rolling and red eyes. Unbelievable tiredness.

I don't understand that.

[zoe69 Administrator Volunteer Vasculitis UK in reply to Chakra111]

Fatigue is very common in vasculitis and then it can be side effect from medication as well.My doctor told me to think that my body is using all its energy to try to heal, so I don't have energy for anything else.

It gets better!

[DogHospiceMom]

I have Lupus, Sjogrens, Vasculitis, Small Fiber Neuropathy, not Central and Autonomic Nervous System Disorders as well as MTHFR. This is a genetic disorder that inhibits the liver from doing its job of methylation. There are many delineations of MTHFR. I have the mutation that inhibits my body from metabolizing vitamin B. This can cause Homocysteine to build up in your bloodstream. Without giving your body the correct methylated vitamin B and Folic Acid, the homocysteine will build up in your bloodstream and cause heart disease, stroke and blood clots. After I went into Complete Heart Block while in recovery from out patient surgery, they implanted me with a pacemaker/defibrillator. A simple blood test can measure the homocysteine in your bloodstream. It is a type of amino acid, a chemical your body uses to make protein. Normally, vitamins B12, B6, & folic acid break down the homocysteine and changes it to other substances your body needs. There should be very little Homocysteine left in the bloodstream. If your levels are high, it may be a sign of a vitamin deficiency, heart disease or rare inherited disorder. Excess levels of Homocysteine may increase your risk for blood clots, heart attack and stroke. Symptoms include: Dizziness, Weakness, Fatigue, Pale Skin, Sore Tongue & Mouth, Tingling in hands, feet, arms, and or legs.

I take a supplement called Homocysteine Supreme for my MTHFR as well as many other supplements. I also invested in an infrared sauna. Using it daily for 9 months, using liquid glutathione as well as stem cell patches, I put myself in remission.