posted
I have now been in treatment for 4 months, (thats not including the 5 months on the MP)
And I am still dealing with horrible symptoms. It seems nothing wants to let up, and I dont understand?? I am starting to feel like this is permanant damage to my brain...
These symptoms interfer with my daily life,... I cant live normally because of these symptoms... I used to be a dance, singer and actor... went to the gym 5 days a week, and NOW I cant even walk to the bathroom without feeling horrible.
This is a symptom that will NOT go away.... This set of symptoms is what makes me want to give up thats how badly it totures me. I have had this for 18+ months now, EVERYDAY/... My symptoms have never cycled, they have always been the same everyday now for over a year.
I feel like seriously giving up... I mean what is even the % that I can or will go into remission? It seems that everyone but a few are sick their whole lives... SO whats the point anyway... what kind of life can I give my children when I am in this horrible state of illness??
I thought, wow I thought last year when this started that I would SURELY be better by now.... But NO I am not... I dont think I ever will......
I had to cancel an appointment with my LLMD for the 9th because I cannot afford it... and I probably will no longer be under care of an LLMD because I cannot afford it....
I dont know what to do anymore....
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
Shandy, I am sorry you are feeling so awful.
This is a hard disease to treat. Most people don't feel better at four months of treatment, especially if they are at the chronic point. And many times it takes even longer... I didn't feel much better until I got around the one-year mark, and then I was able to say I was around 70%. It's now a year and a half and I feel like I'm now at around 60 or 70%.
It really does take a lot of time. I know that's not what you want to hear.
I know what it's like to not have money to pay for anything. Luckily, we've had money for my LLMD appointments and abx (though we've had to go without some supps and vitamins my LLMD wanted me to take), but that's only because we are using credit cards which is NOT good, but we've got nothing else.
It's tough, it really is... I (as well as everyone here) know what you're going through.
I know you don't want your children to only know you as being sick, but it would be much better for them to know you than to not know you at all. That is why you do NOT want to give up.
You can and will get through this. It just takes longer than anyone would like.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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posted
Shandy, I'm six months into tx and often feel just like your post. I too, feel terrible all the time, don't see a cycle; I'm really a mess.
I have 3 kids and hate that the last 3 years I've been so ill; it's very frustrating. I just keep holding on to what everyone says and what I hate to hear...the whole patience thing.
I think the idea of a phone consult is great, is that feasible? I am seeing my LLMD next week as I want to change my tx up some to see if I get better response from other abx's; I'm trying to avoid the IV thing if I can...but my symptoms are all very neuro as well.
Sending + thoughts your way...hang in there, it's tough, we know. TS
Posts: 566 | From West Coast | Registered: May 2008
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I started treatment about the same time you.. I have gotten soooo many new scarey symptoms and wonder what was going on and have gotten soo much worse.
I have had no sign of illness until feb 08 The dr. said I probably had this for a long time.
I have been on IV rocephin so go figure. I do know that the co-infections may have played a role in my failing.
I started a new protocol for babs , and noticed worsening of my worse symptoms, but I also noticed that my temp was 98.5 when it has been 97.4 or lower over the past 5 months.
DO whatever you can to get rid of this disease. You deserve to be healthy and enjoy your family in the future.
barb
Posts: 167 | From USA | Registered: Jul 2008
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