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How long until I see improvements?

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Posted 4/11/2013 8:38 PM (GMT 0)
Started antibiotics ten days ago. Have had to endure a wicked herx. My symptoms are all neuro with predominate anxiety. My herx is easing up a bit. My question is how long does it take to see improvements? I know it's a long road and I am not asking about curing or remission, just an idea of when things start to turn around. I don't think I have lyme that long ( under 2 years).
Posted 4/11/2013 9:02 PM (GMT 0)
Hi Jit!

It really depends on each person. My herxes tend to come and go. The last one lasted.... Probably for 3 bad days and then a less severe day on the 4th and 5th. (It took two weeks before I even got the herx). I'm now on week 6 and not doing too bad. No aches or pains. A little weak, teeth sensitivy, minor issues like that except I seem to herx most in my heart which stinks!!! I should mention that I primarily have neurolyme so that might be a factor in why my herxes aren't as bad. I'm also doing a lot of detoxing and supplements!

Just keep walking and before you know it you will start feeling better!
Posted 4/12/2013 6:26 AM (GMT 0)
That is the million dollar question!!!!!!!!

If we only could predict the answer,as Beth says every case is different.
Posted 4/12/2013 6:34 PM (GMT 0)
Yes, it is the million dollar question!

For myself, I started to see improvements about 6 months after starting treatment. For the first 6 months, I felt completely awful the majority of the time. It felt like a never-ending herx.

I listened to an audio interview of a leading LLMD and she said that hardest thing about treating lyme patients is to get them to stick with treatment. She said that her patients that stay with it do get better.

The herxes are horrible and the process of recovery takes so long that it can,at times, seem hopeless. It's hard to see the light at the end of the tunnel, but that light IS there.

Stick with it and keep fighting!
Posted 4/12/2013 8:24 PM (GMT 0)
Thank you for that mystery. I talked to my llmd who said 6-12 months. But I figured it must get better little by little or at least better than this. I am In the middle if a dark hole of depression and anxiety. I just wish my rational brain would return so at least I could mentally cope better. My doc said anxiety with tick born illnesses is completely irrational.
Posted 4/14/2013 4:43 PM (GMT 0)

Jitzoo said...
Thank you for that mystery. I talked to my llmd who said 6-12 months. But I figured it must get better little by little or at least better than this. I am In the middle if a dark hole of depression and anxiety. I just wish my rational brain would return so at least I could mentally cope better. My doc said anxiety with tick born illnesses is completely irrational.

Reading this made me tear up for you! I know exactly how you feel. Last week I literally thought I was dying and going crazy. It was HORRIBLE. The worst I have EVER felt mentally. I hope I never feel something worse than that. The ONLY things that got me through it was being with my daughter, my dad, and a good friend. And prayer/meditation. It's HARD. I really believe the mental stuff is by far the hardest to deal with. If you can, make sure you have good people with you. Don't be alone, if you can help it. And meditate...get outside, breathe deep, lay in the grass/sit in the sun/take a walk with a good person. If you believe, pray. I'm not super solid in any religion, but I believe in the power of prayer and positivity and good energy of this Earth...I sent a prayer out for you right now.
Posted 4/15/2013 2:28 AM (GMT 0)
Megara,
Thank you for your kind words. I too believe in the power of prayer. This illness and treatment has definitely tested my faith. I know that someday this will all be for the better but right now it's most certainly a struggle. I will try to stay positive.
Posted 4/15/2013 6:32 PM (GMT 0)
Jitzoo I keep telling myself that this test is going to be my testimony and I will be able to reach back and help someone else who will have Lyme when I am totally healed. I believe that I will be totally healed but it took months to believe it.

The anxiety is horrific but like megara...my son rocks and his sweet smile and laugh gets me through each day.

It does get better with treatment...the right treatment and even then you might need some tweaks along the way.

I pray for a cure one day or a protocol that all can follow to knock this out or knock it down. I also pray for the day that insurance will cover it all!

Prayers to you Jitzoo and everyone else on here. May peace be with each of you.
Posted 4/15/2013 9:04 PM (GMT 0)
Be patient. I probably had Lyme for at least a year and possibly upwards of 3 years.

It took over a month for my brain fog to even begin to recede and I was considered lucky. Your neuro symptoms will be the last thing that improves and it can seem like forever.

I've had three relapses already and the only solace I can give you is "the sicker you are now, the better you will feel later". You will eventually get better. This keeps me going when my symptoms gets rough.

I personally could handle the Herx and all of the pain, it was the "unknown" of this scary disease that almost killed me. I want you to know that all of us have been through this, including your anxiety. For me, the anxiety was intense.
Posted 4/16/2013 5:35 AM (GMT 0)
I totally understand you too! I have been at this for about 1yr in June and I think it will never end. My anxiety is the worst of all my symptoms and the herx goes on and on. If only we were all the same this would be much easier. I take everything my LLND says and still the brain is on fire. We got to hang in there. I pray for all on this site.
Posted 4/16/2013 6:31 AM (GMT 0)

Jitzoo said...
I know it's a long road and I am not asking about curing or remission, just an idea of when things start to turn around. I don't think I have lyme that long ( under 2 years).

That is the 10 million dollar question! As everyone stated, it varies for everyone. After 10 years I'm still very ill but I was not lucky enough to be diagnosed quickly.

I was told once that healing takes about 3 or months for each year you've had Lyme but I know people who recovered sooner and some took longer. Lyme is not an easy disease or everyone would be cured. There are many strains and some people have to try different things to recover. I wish you well in your healing journey.
Posted 4/16/2013 2:31 PM (GMT 0)
Thank you for all the responses. For me, and I imagine most everyone, the most disheartening part is that after a bad herx I feel just as badly as I did before the herx. I would hope that after such ugliness I would at least see improvements. But like you have all said I need to be patient. Easier said than done, right?
Posted 4/16/2013 4:29 PM (GMT 0)
Right!! But hang in there anyway, better days are ahead. Progress can be quite slow, especially if you are not addressing all of the 'little' things that may be wrong or 'off', like thyroid, adrenals, intestinal issues, co-infections (okay, not so little!).
Posted 4/17/2013 4:47 PM (GMT 0)
Thank you Trav,
I think you are right about making sure everything else is in order. It is all too easy to blame every little symptom on lyme. I think my adrenals are a little bit off. it gets overwhelming when you start to investigate all the other things. I know it is necessary but it is daunting. I started this journey investigating all those things- vitamin d, thyroid, hormones, neurotransmitters, food allergies, vitamin defiencies, etc. I hate constantly analyzing my symptoms. I need to take a little break from trying to figure it all out and just let the meds do their job.
Posted 4/18/2013 12:26 AM (GMT 0)
Actually these infections mess up so many things in the body that it does affect the adrenals and thyroid among many other organs - and including teeth! Although it also takes a lot of patience to be a Lyme patient- snicker, snicker!! eyes I know, bad joke, but I couldn't help myself!! LOL! It's still true!

Be sure you are doing all you can to detox (see the thread "New to Lyme?"), as if those toxins build, they will bring only more or increased symptoms....and none of us wants more to deal with!!
Posted 4/18/2013 12:54 AM (GMT 0)
So that is why my teeth hurt? It really messes with everything. Know wonder our medical bills are so much. Seriously my teeth hurt and jaw you guys too?
Posted 4/18/2013 6:30 PM (GMT 0)
Yep...my jaw aches at times and my teeth are sensitive now :(
Posted 4/18/2013 7:19 PM (GMT 0)
yup
Posted 4/18/2013 8:11 PM (GMT 0)
A lot of us have the same symptoms...I also have jaw pain....several years ago I was dislocating my jaw at night. Needless to say that would wake me up, it was so painful. I found a chiropractor who would push it back in place. That went on until finally a neurologist put me on klopin which had an immediate effect. I still wear a night guard and have minimal jaw pain now.

We all have wondered when will we be done with treatment? I was in a very dark place for at least 6 months and then I would have a good day, maybe two good days etc. Now I can live my life with minimal symptoms- the headaches got worse after the LLMD added more meds so that is a pain to deal with. And my hair is falling out again after stopping for quite some time :(. It is a slow pace but keep with your program.

I also had adrenal/thyroid problems that had to be medically addressed to help with the healing. Hey it is what it is...at least I found out and am treating those areas too. We are with you.
Posted 4/18/2013 9:38 PM (GMT 0)
Like Flowergal, I go to an osteopath who pulls and pushes my jaw in the right position again - such relief!!

I noticed that I'm biting my teeth at night lately (sorry language barrier, don't really know how to phrase it, I'm putting pressure on my teeth, I bite them hard), don't know how to stop that. I'm trying to be conscious about it during the day, maybe I'll change that pattern like that.

 

Posted 4/18/2013 10:15 PM (GMT 0)
I grind my teeth at night. I have a nightguard now and it really helps.
Posted 4/19/2013 11:29 PM (GMT 0)
Thanks for letting me know you guys..........It really is amazing all of the things lymes affects. I think I have been driving my dentist crazy!
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