Should I doubt that I have Lyme?

I posted a couple days ago asking you all opinions whether I had Lyme & majority said yes it sounded like I did.

I just have a question, so many people with Lyme I see have a hard time doing much physical activity. I see where people have pain.

I have neither of these things bothering me and I know Lyme affects everybody different. I do seem to get gassed quicker and feel older then I really am but I can push myself to do physical activity if I really want to. I just walked a trail of 3 miles and it was tough but that's just because I'm really out of shape. My mind felt more fatigue then anything. My concentration is already really bad from what I suppose is Lyme disease. But I don't feel completely wrecked like some people with Lyme do.

On the other hand there have been times where I have done the laundry and feel like it m exhausted.

But as far as pain, I never really deal with that.

Most of my problems are neurologicaly

Again, I'm new to this page & new to Lyme so I'm a rookie with this stuff. I guess I'm kinda in denial and although everything points to Lyme I still look at myself and compare to somebody else. I went 2 years not knowing what to call my illness so maybe it's just a surprise It could finally have a name.

Ang like I posted a couple days ago I have most Lyme symptoms l, I have dealt with this for 2 years and been tested for nearly everything. Western blot showed 23 igg positive & I have a history of tick bites.

I just did the Horowitz's test & scored a 77.

Goshawk thank you very much! I see my llmd in 2 days & im sure we will discuss treatment then.

I guess I just need to accept the fact that everything points to Lyme.

Borrooburgdoferii, thank you very much!

Hey RWB,

I too had about 2 years of feeling very off, unwell, fatigued before figuring out what it was. I was never fully disabled either. I have always been able to trudge through and do some physical stuff here and there. Now that I have improved so much after 9 months of treatment, I can do a lot more without getting wiped out.

I remember asking similar questions early on when I started treatment too.

I am a very skeptical, science minded person. So, by nature I question everything too. I still wonder why some are bed-bound or disabled, and some are still able to work. The science does not seem well explored.

My hypothesis is that some strains of Borrelia are more virulent then others (I believe the science already supports this). Common sense tells me simultaneous infection with other pathogens would be ubiquitous. Each person also has their own genetic inclinations, immune systems, and history with other infections that may play a role.

I think skepticism, self reflection, and asking questions is good; and probably the best thing to help our collective cause.

It's okay to carry some of that skepticism along with you while you figure out your path. I know I do.

Redwhite&blue - much of the fatigue here is endocrine driven. These bugs tax the thyroid and adrenals.

Low in range is still "low". You can boil 1/2 in of water in a pot, but cant make spaghetti in it, its to low.

Redwhite&blue said...


So would you both also say that band 23 igg & Lyme symptoms are enough for a for sure diagnoses?

All I can say on that has already been said: "(Since you do have a history of tick bites plus positive band 23)" - the odds are against you.

A history of tick bites pretty much means you would have come in contact with some type of tick illness in the past. Lyme is not the only one.

The type of ticks and Geo-graphic location can increase this too..

All LLMD will run more tests like CD-57 (lyme usually lowers this) and C4a (lyme can elevate this).

There is no 100% accurate lyme test yet..

& actually my cd57 is low. It's labeled as abs.CD8-CD57

DHEA - sulfate was a little high

VGEF borderline low

Lyme is not the only thing that causes fatigue, or cognitive impairment. They are core symptoms of ME/CFS. There is a lot of confirmation bias in these forums, which is not good for anyone. Lyme exists. It is debilitating. It does affect people differently (of course there are different strains of lyme).

Also CD57 isn't really a good marker for lyme, because they can be multiple causes of lower CD57 levels. It can be used alongside a battery of other tests to compliment them, but it should never be used as a diagnosis. Even my IDS (who I got a CD57 tested with) agreed can be low in a number of different diseases.

You could have lyme. It is possible. The tests out there have false positives. Only thing you can do is thoroughly test and if it appears you are positive, try abx and see how you respond.

Redwhite&blue said...
SeanIRL I see what you're saying but I don't understand how I have been healthy all my life & then just randomly become ill. The only thing I can think of is Lyme. I had tick bites months before feeling bad & with all the blood tests everything is leaning towards Lyme disease unfortunately.

I agree. Are you going to see a LL dr? He/she can also do a clinical diagnosis and start treatment.

Often we will herx within a couple of weeks - from the dieoff

M/E can be from Lyme - and not a separate ailment.

Girlie said...
M/E can be from Lyme - and not a separate ailment.

Some lyme symptoms are similar to M.E, but ME has many triggers. Bacteria like lyme are just one of many. A large portion of people with M.E do not have lyme.

But I would say anyone who is struggling with their energy levels, brain, pain, etc.. should always get tested to lyme to confirm or eliminate it. An ME/CFS diagnosis is a diagnosis of elimination.

Let us know how your llmd appointment goes and I hope it helps to give you more understanding in your search to get well.