Well, I've probably had Lyme for over 10+ years, and have had some nasty symptoms during that time, but nothing as alarming and extreme as what I am experiencing now. After being treated with nonbacterial prostatitis with NSAIDS earlier in the year (and after a time when my immune system was compromised), all hell broke lose. I started to get burning/acidic pains in my muscles/nerves, sharp, stabbing pains everywhere from earlobe to toe to face, etc., started to get involuntary jerking and constant muscle twitching, along with creepy paresthesias (electric shocks, neuropathic itching, and water dripping). I dealt with these severe symptoms since April 15 of this year, and it wasn't until about 3+ months later (July 17th) that I finally saw an LLMD and began oral antibiotics (mino, cedax, plaquenil). I've been on antibiotics for only 3 weeks and haven't really herxed or gotten better. Or I may have herxed and just not known it because things are already so bad. I don't care about my cognitive problems, lethargy, prostatitis getting better or anything else that I have had for many years, but I HAVE to beat the Lyme in the PNS. It's like I am being tortured EVERY 5 seconds. Do you think my chances are good of eventually ending the infection in my PNS and stopping the pain, parasthesias, twitching, jerking, etc. because these particular symptoms haven't been going on for years... just the last 4 months. I need hope, because it is like hell day in and day out (or more like minute in and minute out). Thanks in advance!
Posted by northstar (Member # 7911) on :
Hi, Yes you will get better; 3 weeks is a very short time. I had same symptoms. It took many months for it to reduce. The first 3 months were just stabilization, then lessening after that.
One thing that helped me was diet and supplements. If you google/search for diabetic neuropathy, there should be lots of info out there: omega's, b vits (full spectrum plus sublingual 6, 12, folic acid), r- lipoic acid, NAC, acetyl-l-carnitine, etc. (not a full list ).
These are to aid in repair of myelin sheathing.
Multi-mineral, with extra mag was helpful.
Vit. E (I am using Weil's mixed tocopherol/tocotrienol), C (I'm using a food base, not ascorbic acid), beta-carotenes also are used (I snack on dried goji berries for this).
My diet was mod/low carb, no sugar as in cookies, pastries, etc. (uh, well, I have slacked off in the cookiie department a little) I use stevia. Beware of other artificial sweeteners.
Lots of diet tips on this board.
And probiotics. I still take 3 / day.
Beware any foods with glutamate. I felt it was easier to just not buy any pre-made foods, to avoid chemicals. That includes even lunch meats, pre-made sausages, bacons, cereals, etc. One has to read the labels as there are many hidden ingredients.
A lot of people here have developed gluten sensitivity, so you may want to consider having yourself tested, or just eliminating wheat, oats, barley, rye.
Actually, it is easier to say: rice, limited potatoes, rice, corn, rice, quinoa, rice, millet, rice. Brown, black, red, and wild rice are most nutritious.
Also, do a search here for "neuropathy". Some did b-12 shots, others had to use various painkillers.
Yes, that symptom is enough to make one scream! And yes it will gradually decrease. What you can do is help your body to heal itself and let the abx do its job.
I am sure that is not all, and others will have more helpful hints and encouragement.
Northstar
[ 08. August 2006, 01:15 PM: Message edited by: northstar ]
Posted by madhattan (Member # 9760) on :
Thanks so much, northstar! I am already following pretty much all of your advice and taking most of those supplements. I just wish I had more waxing and waning, but, no, it's been a pain or abnormal sensation every 5 seconds for 4 months straight. I wouldn't wish this on my worst enemy...really. I'm just barely holding on, but I'm trying to have hope!
Posted by northstar (Member # 7911) on :
Another thought: There have been threads about quinolinic acid being released, which is toxic. And I believe there were things people did to help this. (this is my "memory", so dont bet the house on it). See if a search will lead you there.
Also, other detox stuff.
Watch pH, i.e. include greens, brassica family, etc.
Three weeks of abx is just the beginning! Hang in there. My symptoms were like that also for 5 months prior to treatment, and I also had the lightning strike crowbar through the head. (I am sure there is a scientific term for that, somewhere)
I would say it was about 10 months (I was pulsing by then) that the symptoms were non-existent.
Northstar
Posted by bv (Member # 9578) on :
Yes, it will get better. I am a newbie here also & i have most of the symptoms you mentioned, lots of tingling, burning of feet, legs, face, stomach, back, etc, bad muscle twitches in legs & muscle pain & etc. I also had dizziness (felt like the room was slowly moving all the time). Doc diagnosed me with LD in March, 06. I am taking 200 mg doxy 2x a day & 500 mg alinia 2x a day (started on flagyl but doc switched me to alinia cause flagyl was making neuropathy worse). All of sudden, in last 2 weeks, the dizziness & spining is just gone. still have the other symptoms, but now know that this treatment is going to work. I am also taking hydrocodone for the pain & it REALLY helps. Might want to talk to your doc about that. Good luck. Hang in there.
[ 09. August 2006, 08:01 PM: Message edited by: bv ]
Posted by bv (Member # 9578) on :
Northstar [/qb][/QUOTE]"lighting strike crowbar through the head" Now that is pure poetry.
[ 10. August 2006, 07:56 PM: Message edited by: bv ]
Posted by Ann-OH (Member # 2020) on :
I have problems reading a solid block of print, so have split up your post for those who share my prob. Just hit the Enter once in a while.
Ann-OH [quote] Hi all,
Well, I've probably had Lyme for over 10+ years, and have had some nasty symptoms during that time, but nothing as alarming and extreme as what I am experiencing now.
After being treated with nonbacterial prostatitis with NSAIDS earlier in the year (and after a time when my immune system was compromised), all hell broke lose.
I started to get burning/acidic pains in my muscles/nerves, sharp, stabbing pains everywhere from earlobe to toe to face, etc., started to get involuntary jerking and constant muscle twitching, along with creepy paresthesias (electric shocks, neuropathic itching, and water dripping).
I dealt with these severe symptoms since April 15 of this year, and it wasn't until about 3+ months later (July 17th) that
I finally saw an LLMD and began oral antibiotics (mino, cedax, plaquenil). I've been on antibiotics for only 3 weeks and haven't really herxed or gotten better. Or I may have herxed and just not known it because things are already so bad.
I don't care about my cognitive problems, lethargy, prostatitis getting better or anything else that I have had for many years, but I HAVE to beat the Lyme in the PNS.
It's like I am being tortured EVERY 5 seconds. Do you think my chances are good of eventually ending the infection in my PNS and stopping the pain, parasthesias, twitching, jerking, etc. because these particular symptoms haven't been going on for years... just the last 4 months.
I need hope, because it is like hell day in and day out (or more like minute in and minute out).
Thanks in advance! [end quote]
Posted by madhattan (Member # 9760) on :
BV- Thanks! However, I have tried hydrocodone and pretty much all other pain medicine, and nothing has worked...it's
that bad. When I say torture...I mean torture! Thanks for your encouraging words, though. Posted by Aniek (Member # 5374) on :
Mad,
I get involuntary movements and muscle twitching. I have found they get much worse with stress. I've had a huge improvement by not letting myself get stressed over work.
It's amazing how it works to just stop, breathe, and say "if it doesn't get done, it doesn't get done."
I have recently discovered that my autonomic nervous system is out of whack because I have had Lyme for so long. 19 years now, 17 years before diagnosis. The doctor who diagnosed and is treating that believes it is the cause or worsening my pain and tics.
He tested my amino acid levels through a 24 hour urine catch. They are very, very low. So he just started me on amino acids targetted to what I need in my system.
He also started me on B-12 sublingual tablets, taken with a liquid form of Folic Acid. These are low too, but he said without the amino acids my body can't use the B vitamins.
I'm at the beginning stage of this treatment for the autonomic nervous system. But it really makes sense to me, that being sick for so long, my body no longer takes care of itself. Instead it is working constantly in the stress mode.
-Aniek
Posted by Laurie (Member # 159) on :
Two words:
NEURONTIN and amitryptilline.
ESPECIALLY Neurontin (gabapentin). Saved my life and sanity,
I take Lyrica and noritryptiline. Both are for neuropathic pain (which is the worst pain I have ever imagined having.) You need to ask your LLMD or PCP or SOMEONE for some relief!
Good Luck! Jill
Posted by minimonkey (Member # 8693) on :
Between amitriptyline and vit b-12 shots, my neuropathy is almost entirely gone (and I had it bad, bad, bad, for many years!) Yes, neuropathy/paraesthesias are awful. Funny you mention the water dripping -- I was getting "phantom raindrops" on my hands for a while -- spooky until you get used to it. The "knife thru the flesh" stabbing bit is no fun, either.
I tried Lyrica (similar to neurontin) and it didn't help much at all. (I was on Topamax for migraine prevention for a short while, too, which made it 10 times worse!)
Posted by madhattan (Member # 9760) on :
Thanks, all! Unfortunately, I have tried every single drug that has been mentioned. The only thing that I haven't tried are the b12 shots, and I'll ask my LLMD about them during my next visit. Ugh. Seems like it will never end.
Posted by Ann-OH (Member # 2020) on :
Neurontin is a good idea, and easily tolerated.
B-12 can be taken sublingually. you can get it in the health food store. It is as effective as shots, according to a recent study, and a lot less expensive and invasive.
I posted that study here not too long ago. You can probably find it if you go to "search".
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