My husband has a background in Biology so when I say things like "they are smart bacteria" he tells me such organisms can't "think"...and even on a good day I can't intelligently argue back and intellectually build my case. Bottom line...my husbands question is this:

You started treatment last Spring and were doing better and now at the end of the 9 month treatment you are suddenly worse. Why? and what can be done about it? You are worse off than before you started treatment.

He thinks I started treatment when I was more or less asymptomatic (but in my opinion I was simply functional and able to cope with the depression and fatigue I had for so long) so from his perspective, my decision to treat has open up "a can of worms" and if I had left things along I would not feel this way.

I'm just not sure how to explain myself and where to point out he is wrong in his thinking. I tell him to "research it" but he doesn't have or make the time. I don't know, perhaps its not worth arguing but I feel like if I could explain it he might have a better understanding of where I am coming from.

Did anyone else who was seemingly "asymptomatic" decide to treat?
*when I say argue, I'm not talking fighting, instead justifying a point*

Thanks for listening.

Hi smcalumni96

First, I'm sorry - this is a tough aspect of this illness. It's not hard enough that we're fighting the infections and the hit on our bodies, but we're fighting against a broken system and misinformation on a gross scale. And it's so hard for our loved ones to understand it all.

You're not battling your husband, you're battling misinformation. So keep that in mind.

Having been around this forum for a couple of years and reading countless histories sufferers have shared, doing a ton of research and taking my own experience into account--I'd say your journey of "toughing it out" is very typical for most chronic sufferers. We cope and cope as symptoms start to add up and we keep plugging away. We do this for several reasons -

a) when we do seek treatment, we're told it's psychosomatic, fibromyalgia (which is NOT a diagnosis--it's just a name for a group of symptoms that the pharmaceutical companies have developed drugs for, chronic fatigue syndrome (again, the cause is not understood--or investigated but they've given a group of symptoms a name) or a host of other issues--but definitely not lyme or coinfections. For most of us this lack of diagnosis went on for years. 16 years for me.

b) When we're told it's just stress, we believe that, too, and it's something we can blame ourselves for. We try to make minor adjustments but it's usually too late for much impact. And life is just stressful. Add a horrifically misunderstood chronic illness on top of that and we slip into a dark place where we just accept our suffering.

c) There's a beacon of hope that it IS just a passing "thing" and we can will ourselves out of it.

d) And for many of us--after a long period of illness, no answers, no help, no support - we just get tired of fighting.

I'm sure there are variations on those approaches but I also assure you, you are not alone. "Asymptomatic" is a label--it's not your reality.

When other sufferers have come onto the forum and have shared almost exactly the same frustrations as you're sharing, there's been an outpouring of acknowledgment and shared frustration because so many of us have been through it. There are support groups for spouses and family members - you can find info in the "New to lyme?" thread at the top of the page.

You were smart to post your questions. Hopefully others will chime in and share how they helped their loved ones be more supportive.

-p

Hi smcalumni96,

Isn't that the pits? Like it isn't hard enough getting through the days not to mention facing the unknown and trying to figure it out but then when your support system is another source of struggle....

My DH says similar things to you and also won't make time to look anything up and educate himself. He occasionally looks things up to refute something that I've said, though, which is very disheartening and is really taking a toll on me emotionally.

All I know is if I was the support system for someone that had this I'd like to think that I'd do whatever I could and would try to educate myself so as to take some of the load off the lymie.

My doctor says your husbands statements are a common thing that men say. "If you feel worse taking the stuff, stop taking it".

On the other hand listening to the Lyme Summit speaker about the 3 phases of lyme makes me rethink the whole kit and kaboodle. Here is a link to the summary if you are interested:

https://www.healingwell.com/community/default.aspx?f=30&m=3614097