posted
I've been doing the Lyme meds thing for about 9 months, now. (I.V. rocephin for about 3 months.) I've seen very slight improvements as far as brain fog and memory, but my fatigue level is still insane, and I still can't sleep well. I know that there are people here who have been living with lyme for years. Am I just being impatient?
Posts: 135 | From Orlando, Florida | Registered: Feb 2009
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
gridmonster,
I understand your impatience.
I have been treating with orals for 9 months.
I had lyme for 21 years before starting treatment.
I have seen some small improvements.
One recent improvement in the level of pain on the left side of my neck is encouraging.
My LLMD told me it could take as many years to get well as it took me to get sick.
Of course we are hoping it takes alot less time than that.
Have you treated for babesia? Untreated babs can hinder recovery.
I started sleeping better after hormone testing and starting bioidentical hormones.
Keep the faith. There are alot of other people who are in the same boat.
Wishing you more improvement!!
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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posted
Than you for your response, Dekrator48. I've been treated for Bart and Babs, at least that's what my LLMD tells me. I sincerely wish you well, and continued healing.
Posts: 135 | From Orlando, Florida | Registered: Feb 2009
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posted
There is the progress of the antibiotics killing off the bacteria. With that you get the nasty sick herx reactions and some feeling better.
There is the progress of your body structures healing themselves because they aren't being eaten up by lyme/toxins anymore. This is a slow process, especially with nerve damage.
I've been on oral's for 10 months now. I'm still sick. I get times of feeling good. However, when I feel bad, I'm not as hellishly miserable as I was earlier in the year.
I have had wonderful success in treating the cognitive symptoms....forgetfullness...well basically swiss cheese memory....... I started taking NAAMENDA It is an alzheimer's drug. They have handed out one month sample packs to several of my doctors. It is worth it to try it out.
I noticed an improvement in two doses. After a couple of weeks.....I was in awe I kid you not, this drug has given me my brain back.... mostly, most of the time. Sure, there are times where I just don't function. But My overall level of cognitive functioning has improved 99% If after the one month free trial pack, you don't have improvement....no harm done not usually bad side effects
So, lyme is a long road recovering from it is unlike any other illness
I am on my second round with this disease... note my membership number #210 I started back in the dark ages.....
Do whatever you need to, to get better. Antibiotics supplements psychiatric meds using meds off label use (like namenda) counseling friends online support group (I had to start one) spiritual support exercise anything......
-------------------- Lyme is like the flu. You can get it and recover, but you can always get it again. Posts: 607 | From (deer tick)Heaven! Angeles National Forest | Registered: Oct 2000
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posted
Oh how i wish i could tell you a time frame. However there are so many factors that everyone of us have that may or may not make the time frame long or short.
Things like co infections How long you were infected your personal health and on and on
I hope for you its short but be ready for the long haul. I know its disappointing but you will eventually feel better. It took me 8 years. I was in bed a lot and had days i could do stuff and days i could not. I tried to enjoy the days i could and knew it was but for the momment. Finally for 6 years i got better. I had a relaps recently.
I think it was due to several sever falls and it started them going again.
It will get better so just hang in there.
Posts: 112 | From Ohio | Registered: Aug 2006
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posted
The first time with Lyme, I thought it was MS. Lyme is much preferable a diagnosis..... there is treatment, hope and knowing things will improve unlike with MS
The second time with Lyme, it was slow progressing peripheral neuropathy pain.... When there was no diagnosis, my hope began to fade. It took 2.5 years of suffering with no hope, to get a diagnosis. Now, I have hope. I know I will get better. I have faith I will get well. I did it once before. I can do it again. HOPE, belief that with the help of God, doctors and antibiotics is what will get us through. It is a hard road, but it isn't a dead end.
-------------------- Lyme is like the flu. You can get it and recover, but you can always get it again. Posts: 607 | From (deer tick)Heaven! Angeles National Forest | Registered: Oct 2000
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posted
Thanks, everybody. I have to keep reminding myself...it's a marathon, not a sprint.
Posts: 135 | From Orlando, Florida | Registered: Feb 2009
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quote:Originally posted by gridmonster: Thanks, everybody. I have to keep reminding myself...it's a marathon, not a sprint.
This is exactly what my LLMD keeps reminding me of.
There is a light at the end of the tunnel, it just takes time. You will get there.
-------------------- Never, Never, Never give up! Posts: 395 | From Connecticut | Registered: Nov 2008
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
As long as it takes. Wasn't that profound? thinking of you Gridmonster, hang in there.
Posts: 3975 | From usa | Registered: Aug 2007
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Getting ready to market a fast forward remote control.
I will let you know when I have it finished. HA!
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
I've had Lyme for 4 1/2 years.. I've only been on antibiotics since 2007 so it's been 2 1/2 years of abx including 3 months on orals which didn't do a thing,
5 months on IV rocephine, 4 months of IV doxy, then something else for 2 months then vanko micine (sp?) for 9 months. Is that right? Bah close enough.
Got my PICC out June 2, 2009. I'm weird but, I miss it so much!! I got so used to my balance with it when I skate. But I still have the tiny dot scar on my arm yay
Found out I was getting worse rather than going into a remission like my dr thought. Rheumatoid Arthritis is now part of the Laura family.
Still on antibiotics, but orals. Definitely less effective, for me, than IV but whatever. I'm better but I'm worse.
The problems I was having early on are still affecting my life but, in a more intense way mostly.
So. Still waiting for the day when I get to experience one day, one hour or even one minute without head pain.(that's the worst pain for me.) no dizziness would rock too.
Anyway, to not answer your question, it took me more than 2.5 years to feel better. Some people are luckier than others when it comes to recovery.
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