posted
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.
Posts: 159 | From usa | Registered: Sep 2014
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
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.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
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
Posts: 159 | From usa | Registered: Sep 2014
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posted
I have had twitching before lyme so im affraid immune system is going crazy
Posts: 159 | From usa | Registered: Sep 2014
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
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
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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posted
Its just discouraging when I read about morbidity and now I have meningtis a year after tick bit. Why wouldnt that show up earlier?
Posts: 159 | From usa | Registered: Sep 2014
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
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.
Posts: 2888 | From USA | Registered: Mar 2004
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- See some liver support links - and magnesium - posted here at another one of your threads:
posted
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 .
Posts: 159 | From usa | Registered: Sep 2014
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posted
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.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
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.
Posts: 315 | From USA | Registered: May 2005
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posted
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.
Posts: 315 | From USA | Registered: May 2005
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posted
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
Posts: 315 | From USA | Registered: May 2005
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posted
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
Posts: 315 | From USA | Registered: May 2005
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posted
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.
-------------------- Sick since 2000 Bulls eye 2005 Dx Babesia, Lyme 2014 Posts: 247 | From New Hampshire | Registered: Aug 2014
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
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.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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posted
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.
Posts: 636 | From Wroclaw, Poland | Registered: Mar 2004
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