My lyme symptoms have been present now for 6 months, right after surgery.
My pain is unbearable - all neuro , including burning, stabbing ,shooting,stinging, numb, twitches, spasms,floaters, joints wanting to fall off, ...........
I started treatment about 1 month ago. I am now on my third and final LLMD. He is good. But with all this constant pain for 6 months, I can't imagine it going away. I have not had a good day for 6 months. I am anxious, and cry all the time. I feel like I am dying. I have read some people healing totally, but with my symptoms, can they really go away when the bugs are killed? Jenin
Posted by AZURE WISH (Member # 804) on :
Did you look in the sucess stories link?
You should cuz alot of the people that get well dont keep visiting the site because they got better and got a life.
Please realize that alot of the people that struggle to "get back" with lyme were not diagnosed early on and many of them have coinfections.
I am one of these people 13 years of symptoms before I was diagnosed and there are people on here who went far longer than that.
I am glad you have a good llmd. That makes a big difference.
Best wishes and hang in there 1 month of treatment isnt really that long... When I was on rocephin the first time I didnt see any improvement till 7 weeks.
Hang in there Posted by Aniek (Member # 5374) on :
Yes. You can get better. I had constant pain for 2 years when I started treatment. That didn't include 15 years of recurring, but not constant, pain.
I'm not cured yet, but I am much better.
Make sure you get pain treatment while you are treating your Lyme. Your LLMD may not be the best doctor to control your pain.
And talk to your LLMD about helping to rebuild your system. You probably have some nutritional deficincies from the Lyme, and may also have adrenal fatigue, thyroid problems, heavy metal toxicity or autonomic nervous system disfunction. Treating Lyme will help these, but you often need seperate treatment as well.
Posted by CaliforniaLyme (Member # 7136) on :
In treatment one month>? Boy you sound like you are Herxing!!! My Herxing always came with strong feelings of DOOM, and to be honest here, something I have rarely admitted, feelings of suicidality. But they passed!!! Thank goodness- and I am so lucky!!!!!!!!!!!!!!!!!!!
The people who have done THE BEST locally have one thing in common- longterm abx therapy AND treatment for ALL TBD infections- those hands down are THE people who have done THE BEST locally.
Posted by Vermont_Lymie (Member # 9780) on :
Sorry you are hurting so much. I hope you are able to get lots of rest, support and good food during this time.
With persistence in pursuing treatment, determination to get better, a healthy lifestyle and a good llmd -- I totally believe that we all can heal over time. It may not be as quick and as painless as we would wish.
I hope you feel better soon.
[ 28. August 2007, 03:30 PM: Message edited by: Vermont_Lymie ]
Posted by Skyler (Member # 11549) on :
I am so sorry you are going through this. I deal with it too. All we can do is hope it will go away and know that for almost everyone, the pain does atleast decrease in strength and/or occurance.
Hang in there! Posted by Lymetoo (Member # 743) on :
You may herx for a long time. Hang in there. It is worth the torture!! I'm so glad you found a good LLMD now!!!
Posted by 5dana8 (Member # 7935) on :
hi Jenin
I am so sorry you have to go threw this
But yes, you will heal...Like lymetoo says you may herx for a while - but you will, in time, get better.
One month is too soon to tell. Week 5 was the hardest for me in the beginning and all heck broke loose. You may get worse before you get better. For some that's just the nature of treatment. But all the herxing for me was worth it to get my life back.
Good to hear you have a LLMD. It does feel like it will never pass & it is taking forever but you will get better over time.
What are you doing for detox? Are you drinking extra water? How about pro-biotics?
I tried the lemon drink for herxing recently & I did get some relief for a few hours, here's the recipe:
It's one or a 1/2 whole lemon in a blender along with...one cup water...one TBS olive oil...strain & drink with food. I found it acidic on my sensitive tummy & taking with a meal seemed to help.
But run any detox methods by your LLMD first to make sure no contradictions with your mds.
Hang in there & hope your pain can let up soon Dana
Posted by groovy2 (Member # 6304) on :
Hi Jenin
I was sick with Lyme and babs for 18 yrs before starting treatment -- I was Very sick - 24X7 pain-- could barely walk- mind was toast --
Now after 3 years of good treatment I feel Great most of the time- I am getting my life back- You can do this too--Jay--
Posted by 5dana8 (Member # 7935) on :
hi Jenin
sorry I forgot to mention I have been drinking decafe tea with lots of ginger root added. Just brew up a big pitcher & cut up ginger root/score the root & seep it a long time in the decaf tea. I water it down & keep in fridge. I like to drink it cold over ice. Tastes pretty good too.
You can also use any herbal teas. Chamomile tea tastes good with the ginger root as too.
Ginger is a good anti-inflammatory & the extra tea & water has been helping me in the detox department too.
Hang in there Dana
Posted by Kerryblue (Member # 4077) on :
Hi, Clearwater here, can call me anytime you need. I am most time up all night & day.
Appears you are young & have much better chance since appears 1 thing can`t fight is Testosterone, maybe other hormones involved.
Now that this DD has become stealth seems like younger & younger.
Worked chronic Pain clinic here, to help. Saw 100`s pts. so sad. Were coming in younger & younger.
Usually, get in mid 30`s, men after 50, when they start to lose their testosterone, in men more knee problemo`s & heart RA & neuro. Also recently feel could be men who just up die in sleep after recent check up.???? Could be attacked the heart why did not show on normal testing. IMHO, is all.
Your odds, lots better than older without the hormones to protect. Chetes love to mess with. Or myco.
Keep the faith, treat your pain. What happens like myself,untreated pain, brain rewires itself for pain. Sure does not help.
Yrs. turned down help for pain till on learn showed brain in pain how changes with chronic pain. Hard to believe when see massive brain changes... So next to taking hammer to knock it out. Take help if offered. I did not know what this was about 10 diff. dxes.
My HMO will not allow treatment.
Know I took huge turn for worse, after way too many yrs. of pain,nausea,fatigue++++. As most know.
Still have scripts outdated for pain. Should have done. Paying for now..
Take care you are young yet, along way slow but sure get better. Did you see Mystery Illnesses 2 on Lyme. 1 girl parents sent out USA. Yrs. mix dx. She slow but sure got better, quicker treated better. Good Luck Posted by jenin98 (Member # 12617) on :
All of you rock!!!I always feel in better spirits after reading your posts. I will stay positive. Thanks so much to everyone. Jenin
Posted by mtnwoman (Member # 8385) on :
Clearwater,
Can you please elaborate about pain? and treatment? and the part about what happens if you don't treat the pain?
thanks!
Posted by shoney (Member # 9925) on :
Jenin-did you end up with Dr S? PM me and let me know who you ended up with
Posted by Ellie K (Member # 12056) on :
Jen,
Sorry to hear you're feeling so down. It's very understandable and I have felt the same.
It's hard to keep hope alive when things only seem to be getting worse.
You have to remember that just getting a diagnosis and starting treatment is the hardest part of the battle. You are on the right path, it just isn't an easy one.
Your good days will come! And when they do, you will relish them. Because you have suffered so much, they will be that much more meaningful.
I am new to this too (in fact newer than you). I have been treating for 2.5 months (infected about a year ago). It has been HORRIBLE, much worse than I ever expected. But just this week I began to feel like I had turned a corner.
I am trying to have guarded hopes so that I don't get let down if I have more awful herxes, but days like today really give my spirits a boost!
Like many have said here before, Lyme is a lesson in patience. I am learning this more each day.
I like the following quote (not sure where it's from): "When you reach the end of your rope, tie a knot and hold on!"
Posted by Aniek (Member # 5374) on :
quote:Originally posted by mtnwoman: Clearwater,
Can you please elaborate about pain? and treatment? and the part about what happens if you don't treat the pain?
thanks!
I'mnot Clearwater, but I'll take a shot at the explanation. Studies have found that chronic pain changes the nervous system, resulting in increased pain.
If you don't adequately treat chronic pain, there is a greater possibility the pain will become permanent. For Lyme, that means the Lyme can be gone but the pain still there.
Chronic pain also weakens the immune system. So it could make it harder to treat the Lyme. The problem here is that I've heard LLMD's refuse to treat pain with opiates because they claim they weaken the immune system. Personally, I think the pain is worse.
There are many forms of pain treatment, and they need to be directed to your specific pain. Nerve pain is treated very differently than muscle or joint pain. The medicines are different. The other modalities are different. Other modalities can include acupuncture, massage, physical therapy, exercise and coping techniques.
I recommend that people find a good pain specialist to help control their pain. It can be very hard to find a good one. But most LLMDs don't have the expertise in pain.
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So next to taking hammer to knock it out. Take help if offered.![[shake]](graemlins/shake.gif)