Is there a cure for lyme disease? or is there just treatment? after 4 weeks of iv infusions i still feel the same as before. i am so tired all the time and in so much pain, even i strong pain med is not working anymore. is there hope to ever be the same again
Posted by sixgoofykids (Member # 11141) on :
It takes a long time to treat, but many of us get well again. I'm well and leading a normal life, but it took a couple years of treatment for me.
Posted by Robin123 (Member # 9197) on :
Sorry you're feeling poorly - it can take a while - many people on IV have had to do it for many months and then they saw a turn-around in their health.
There is another thread in Medical Questions currently that people have responded to - Do People Ever Get Cured From Lyme Or Is It A Lifelong Battle??
Posted by Keebler (Member # 12673) on :
- Jody,
Treatment is to be a minimum of 30 weeks, according to some LLMDs. Four weeks' time is just very early into treatment.
Have you been assessed for coinfections? Often having 2, 3 or more tick-borne infections increased both pain and fatigue. And very seldom does lyme travel alone.
So, yes, it is normal to be tired - and pain is also very much a part of this.
The adrenal and liver support supplements should be helping.
Are you being treated by an ILADS-educated LLMD? I have to assume you are not, otherwise, they should have told you that pain and fatigue take a while to lift.
Maybe reviewing your supplements will help.
As for even strong pain meds, because of the stress on the liver, these can actually make pain and fatigue worse.
However, again, some of the support supplements work well for some. Some very specific pain meds can also work - but the LLMDs know which ones are safest for the liver.
What is your level of magnesium?
Of fish oil?
Are you taking Milk Thistle? If not, what is your liver support/protection?
What is your Adrenal support?
Are you resting enough and also doing some GENTLE movement with your body as best you can to help blood flow.
Have you used Corydalis for pain? That is one that is easiest on the liver. Part of the herbal formula, HerbSom found at www.hepapro.com
Yes, there is hope. While, technically, there is no "cure" there are many who have "conquered" lyme and have gone on to lead active lives. As long as they maintain a watchful eye and have excellent self-care, many have left lyme in the dust. If a flare-up occurs, with quick action, it can be brought under control.
Yes, you can have a good life. -
Posted by Keebler (Member # 12673) on :
- I'm assuming you've read certain articles and books. I am tempted to post some here but I go overboard wanting to be sure someone has all the information they need. So, to spare you bombardment, I'll hold off.
If you want stuff that clarifies my questions above, let me know and I'll post an annotated bibliography that I've compiled - stuff I sure wish I had had back when I was starting with nothing - and no doctor.
The Lymebrary and other sticky threads at the very top of the forum list have good sets of detailed information, too.
Remember that lyme is one of the most toxic infections known to man. It's complexity can send even the brightest minds screaming into the woods (uh, or away from the woods). Clearly, the study of lyme is not for the faint of heart.
As hard as this is, the only way out is through. Yes, it's worth it. Yes, there are many ways to approach or complement to make it easier.
- Although the title is "Cure Unknown" the author detailed how she had regained her health. She may call it remission but to me she certainly seems to have conquered it. I dream of having the endurance and brain power that she has - someday.
DVD,with post, is $40. and worth every penny. It explains a lot.
-
Posted by Jody Rinehart (Member # 24080) on :
thanku everyone for the info, this website makes me believe there is hope for me. i just got medicaid so i am hoping to be able to find a good doc. my docs just ordered another week of infusions so maybe that will help. i am going to ask them about my liver functions 2moro
Posted by Lymetoo (Member # 743) on :
You can get your life back!! It takes a long time if you've had this a long time!!
Posted by lyme in Putnam (Member # 11561) on :
The hardest thing is the patience, but you can get better. We're all trying. Feel good.
Posted by MADDOG (Member # 18) on :
There are different stages of this disease.
Each one has a different time, dosage,and treatment regumin.
Early treatment has good results.
As for me,my lyme wasant diagnosed for 6 years.
Then my treatment was cut short due to insurance companies greed.
I have had months of oral antibiotics of every kind just about there is.
3 months IV rocephin.
14 months deep intramuscular benzathine pennicillin G shots two a week.
I am considered cronic late stage,the penn G shots were the last try in the ILADS guidelines. I had one year remission.
I am still lymed out today,disabled ,and fighting SS for my disability.I feel if i could get 9 months IV rocephin then ,a year of penn G shots ,then another year of oral doxy,then mabey I could have half a life again.
I am not shure if at my age my liver could tolerate such radicle treatment.
MADDOG
Posted by Melodymaker (Member # 16434) on :
Hey Jody, hang in there! Our ID specialist treats with 4 months of IV antibiotics, followed by appx one year of oral.
It does take a long time, but it's worth the patience. You will get lots of help and guidance from the people here.
Remember, when you feel really bad, do something you love like reading a book, or watching a movie. Support your spirit and your body, it's time to be good to yourself!
Posted by sutherngrl (Member # 16270) on :
Don't make the mistake I did. I kept putting time limits on myself. I would say....."I know I will be well in 3 months".....disappointed on that one. Then I said 6 months.....more disappointment, then a year and so on.
I have been in treatment for 21 months now and I think I am finally starting to see gradual improvment. I already know I will be in treatment at least another year.
I think if I would have just accepted that its gonna take a while to begin with, I would not have suffered so much anguish and disappointment.
Don't try to gauge your improvement on a weekly or even a monthly basis. Keep records of how you feel and wait several months before you compare.
You will learn patience with this illness and it will make you stronger.
LD takes a while for many of us to get over. There will ups and downs but you "will" get well.
And who knows maybe you will be one of the ones that gets well quicker. There are ppl that do improve within the first few months of treatment.