Other forums

As some of you know I was dxd with ALS but kept searching because of a low cd57 and 3 equivicol lyme tests which eventually led me to a llmd which dxd me with chronic lyme.

Why are there so many other forums that totally bash lyme and state it's just a way to rip us off and that we truly have ALS or other ailments? It's very hard to read and I choose to stop going anywhere but here. I don't understand why they are so adamant...

On a side note, my son received his cd57 and it was 18 (holy cow). He will start going to my llmd soon. Now it's ...did this get passed to him in utero or did we all get lyme from a camping trip 8 years ago. He has lost a ton of weight and has muscle wasting and cognitive issues. We were all bit after walking through the woods for a hike, bad bad idea.

My husband had cd57 of 46, he is also being tested further. This disease really sucks if it's affecting my whole family 😢

He did indeed. I feel labeled to what made sense to that neuro. I feel my symptoms are lyme as they have been going on for quite awhile.
i am glad we know what is going on and we can all heal together.
Don't know what I would do without this site and the support here ❤️

SailorKim-

As a reminder- remember the CD-57 is not really a diagnosis tool for lyme. Now days it more of a progress tracking tool during lyme treatment, due to lack of accuracy. Its now found to have quit a few other influences.

A better marker test is the C4a, influenced by lyme and mold, and as a bonus, its usually covered by insc.

Oh, and you should see what happens when someone mistakenly posts here saying we don't have Lyme, that our issues are all due to CFS, ALS, Fibro, MS or whatever!! It's like a shark feeding frenzy!

i dont know where you are getting that info from, the other forums i went to seem to support chronic lyme disease, and they even do the same stuff that this forum recommend or does. There are always going to be people who does not believe in "chronic lyme" because they dont see any clinical scientific evidence proving chronic lyme exist, and the treatments the doctor are also very questionable as well as unproven/unsanctioned lab tests.

Astroman
My c4a was 3764 which is high. Range is 0-650

So heart back in chest?

I'm sorry, SailorKim - Life interfered yesterday.

Unless new research has been done that I'm not aware of (not too hard to do, but still!), they don't know what all affects the CD57 - all they know is that it can be low in some people with chronic Lyme disease. The doctors should never use it as a diagnostic tool for Lyme or anything else though because it's also been noted that people that are incredibly ill with chronic Lyme can have a high CD57, yet someone with hardly any symptoms at all can have a very low CD57. BUT - it can certainly point to chronic Lyme! Very confusing, I know. I wish it was more clear.

Just remember - because the CDC says the Lyme test results are equivocal, doesn't mean that you don't have Lyme!! It goes back to the political fight that's still ongoing about Lyme. If I remember right, your test results were pretty solid that you have Lyme disease.

The best test (IMHO) is to do the Lyme treatment, and if you have reactions - improvements to your symptoms, herxing, or any of the other things that we see with Lyme - then you have just confirmed it with your body and you don't need the CDC to 'approve' of how your infection is presenting.

No, it's not fair - not one bit! But you are in the same boat with a lot of really good people (us! ), and we are here to help you through this. It's not easy to wrap your head around having/living with these infections, but you're not alone.

Keep reading, posting and telling yourself that it's much better to have Lyme which can be healed and you can get your life back. Then you can be the amazing person you should be!!


Do you have someone to talk with, that can help you through this depression? Do you feel that you are 'just down' or actually depressed, as there are different approaches to each.

Do you have others that you can talk with? Know that most of the Mods (including me) are more than willing to accept emails and try to help out once in a while with talking. And maybe you can 'connect' with someone else here and be "Lyme buddies"- someone that you can lean on and offer words of support to during this time? I had a super one when I was in treatments!! We are still super close even now.

I'm very happy to hear that you have such an understanding LLMD. I hope the med change does the trick for you.

It could be from meds or from the infection, but there's no need to suffer through it all on your own. There are meds and herbs that can be used and people you can talk to - even if it's only us!!

Please do let us know how you are doing with this. We really do understand what it's like - although I must warn you, we will work to help you lift your spirits and see the 'bright side' of things!!