I feel like Ive had a horrible immune reaction from tick bit. Ive tested negative several times but have bad neuropathy, chest pains and now meningitis. I feel like its on a steamroll, just progresses faster and faster and can't be stopped. Can this be stopped and how? I had chest pain, upper spine pain and pressure in my feet. These are my trouble areas. Symptoms never showed up except tingling in feet just pressure. Then I went on doxy for 21 days. tingling came back so went back to drs and got 7 more days and it stopped. now its horrible a year later.
Posted by poppy (Member # 5355) on :
The immune reaction stops when the lyme is gone. You have not had enough treatment and will need to find a lyme doc, as most other docs will tell you that since you already had some treatment, this is something else instead.
Posted by DaleS (Member # 44571) on :
Thanks for the help. I'm afraid treatment is too late. Went to see a infectious disease specialist this winter and said the test was 100 percent accurate. that was a mistake and have been waiting for a llmd since april
Posted by DaleS (Member # 44571) on :
I have had twitching before lyme so im affraid immune system is going crazy
Posted by Razzle (Member # 30398) on :
It is not too late to treat. There are many who were not diagnosed for years and years, who have gone through treatment and now are living their lives free from Lyme. Don't give up Posted by DaleS (Member # 44571) on :
Its just discouraging when I read about morbidity and now I have meningtis a year after tick bit. Why wouldnt that show up earlier?
Posted by poppy (Member # 5355) on :
You have been waiting from April to October for a lyme doc? Maybe you should get your name on another one's list, and make sure they are told you will come on short notice if there are cancellations.
Lyme bacteria are sneaky, can lie dormant and then spring back into action.
You had twitching before lyme? How do you know it was before lyme? Make sure you are getting magnesium supplementation, which will help with twitches.
If it is going to be very much longer before you see a lyme doc, you might want to start one of herbal protocols....buhner, cowden, etc.
Posted by Keebler (Member # 12673) on :
- See some liver support links - and magnesium - posted here at another one of your threads:
meningitis? -
Posted by Lymetoo (Member # 743) on :
I was successfully treated approximately 42 years after my tick bites. So YES, you can GET WELL!!!
Don't give up! Posted by DaleS (Member # 44571) on :
I had an insurance screw up otherwise I would have seen the LLMD in maine. Finally have apt on nov 3 then the maine dr on dec 9th. I'm on the cancellation list for the first dr. Dont really want to drive to nj.
I started getting twitches around nov 2011. I was stressed out from work and school. Had an initial flare up then it calmed down to mostly my left calf muscles. I noticed my left foot was weaker than my right as well before the tick bit but both feet have issues now. Went to the drs and said it was benign. Seemed like bfs to me with slight neuropathy.
Just started taking some magnesium. Thanks for the helpful link .
Posted by Lymetoo (Member # 743) on :
Take magnesium and then more magnesium! Posted by Robin123 (Member # 9197) on :
Many of us have waited years to find out what's going on - for me, 25 years. It's not too late to start treating. When you get the bingos, you'll feel better.
Treatment lands in 3 categories: kill/deter the infection(s), detox, and fortify the body. You can use the Search function at the top of the page and type in any phrase to read archived posts. It's important to know we're all different in what we respond to, and that will be your process, to find that out.
Posted by DaleS (Member # 44571) on :
. It's just scary when I have so many neurological issues. Everyone I talk too thinks I don't have lyme because of the tests but I know I do.
Thanks for the info!
Posted by DaleS (Member # 44571) on :
Awesome information!
Posted by Littlesprout (Member # 7406) on :
I would look into IVIG for nerve pain. It is kinda of hard to het ins coverage but worth a try. IVIG really helped me w late stage lyme and damage.
Posted by Littlesprout (Member # 7406) on :
I would look into IVIG for nerve pain. It is kinda of hard to het ins coverage but worth a try. IVIG really helped me w late stage lyme and damage.
Posted by Littlesprout (Member # 7406) on :
Autoimmune problems also depend on what your genetics are...like if you have the HLA DR4 genotype which makes for a more chronic cast hat test can be don't through lab corp or quest
Posted by Littlesprout (Member # 7406) on :
Autoimmune problems also depend on what your genetics are...like if you have the HLA DR4 genotype which makes for a more chronic cast hat test can be don't through lab corp or quest
Posted by Maia_Azure (Member # 44330) on :
Sorry you are going through this. I know it is hard to wait, but I waited 14 years to get diagnosed correctly, so finding a good doctor is worth the wait. Some doctors have a year waiting list, my wait was 4 months.
I didn't think I would make it, almost got fired from my job while waiting due to cognitive dysfunction.
If you have had extensive testing with no diagnosis, it may very well be lyme. You may also have co-infections, I also have babesia and possibly bartonella (a symptom of bartonella is soreness and pain on the foot bottom).
I believed my doctors when my blood test came back negative for years, I kept asking for them to re-test me. I wish I had known then that the test was inaccurate, I had no idea.
Because I didn't know, i suffered needlessly for long. I am 4.5 months into treatment, still having trouble. But Its a relief to be getting proper care now.
Posted by GretaM (Member # 40917) on :
Yes, Dale. Mine were mostly neurological issues also.
But they are 70% or better on the good days now.
When the meninges get inflamed, it makes life tough. Am currently in a relapse and have had a bad week with the meninges. Too inflamed to bend my spine or my neck. Can't sit because of the pressure of having my legs bent.
Really only comfortable laying flat, or standing. Although the laying flat is only good for so long because the pressure of the gravity of my body hurts my spine after a while and makes my head throb.
Geesh. I am a broken record. Anyways, it is a bad day, been a bad week, but it is still WAY WAY better than it was when I first started treating.
Treat lyme to beat lyme.
Posted by DaleS (Member # 44571) on :
Thank you all for the advice and support. I am
also sorry for everyone else that has
suffered
from this horrible disease. I will ask the dr
next time about ivig and probably get genetic
testing done. I'm so sorry Greta what you are
going through. I pray that you will get
better. My headaches/stiff neck/ear
ringing/eye pain/ upper spine pain continue
to get worse daily. I'm taking dragons blood,
magnesuim, japenese knotweed, teasel, cats
claw, eleuthero, andrographis, milk thistle
and intramax. Not doing a thing. Just feel
hopeless like this cant be stopped.
Posted by DaleS (Member # 44571) on :
Is it possible to have chronic progressive neuropathy and meningitis?
Posted by wrotek (Member # 5354) on :
U dont want it stopped... It slows down infection
Posted by DaleS (Member # 44571) on :
I mean my symptoms keep progressing no matter what I do.
Posted by wrotek (Member # 5354) on :
check out monolaurin and coconut oil
Posted by DaleS (Member # 44571) on :
Thanks
Posted by wrotek (Member # 5354) on :
It is discussed on eurolyme yahoo group right now.. People herx on it a lot and get better after some time like 6 months one guy had.
Posted by DaleS (Member # 44571) on :
![[Smile]](smile.gif)