Hi. I don't know if this is a good idea writing at such a down moment but honestly it seems to be the times I write something.
Just sharing and venting. Not necessarily looking for advice. Honestly I don't know who or what to trust anymore.
Anyways, I stopped taking abx (just for 6 months) some months ago. After that it seemed like everything just seemed to go even more downhill.
Last Febr. I got tendonitis in both of my arms after playing a solo guitar concert.
I've been trying to come out of it for the last 8 months now with some success but I definitely can't play like I used to.
Then I got sent to the hospital by ambulence after experiencing horrible pain, for what they thought were kidney stones.
After 3 days in the hospital they decided it wasn't kidney stones after all. Didn't know!
So, they sent me to another location for a gastroskopie and colonskopi....Sitll waiting for results but they said everything looks normal, though my gut has never been normal.
Then they discovered that my Kreatin level was at 2.6. Too high. So now I'm in and out of the hospital for that.
I believe it is from the medication Lyrica that I take for nerve and anxiety problems, I believe caused by Lyme.
Now they're trying to get me off Lyrica and it is resulting in pretty severe eye muscle symptoms and anxiety.
Lyrica has really helped me a lot to manage my neuro Lyme symptoms and to still lead a half way normal life. Well, at least I'm able to survive by doing the basics, i.e. working part time and a little social life.
Now as I reduce the Lyrica all the old symptoms I thought were behind me are coming back. I'm starting to withdraw and dread even doing anything outside, socially, etc..
This seems like a dead end to me at the moment.
This disease imo opinion has destroyed everything.
Yes, I probably could go to a lyme clinic (I'm in Europe right now) but I don't know what to think about it and some of the more alternative things used.
Don't mean to offend anyone but I've read a bit on the bedates and it seems like some things are really a bit unresearched/unproven....
I already wasted 500 euros on a blood test I felt didn't help at all. I'm scared at simply wasting any more money.
This disease has already taken everything.
Posted by Lymedin2010 (Member # 34322) on :
Lyrica.....ouch. With all the problems it can cause, I would NEVER touch that. It can LOWER your immune system & allow the disease to spread.
The only thing that has helped me & others that I heard of is KLONOPIN. When I take it I feel less symptoms & pain & when I am off it, I feel worst. Only drawback is that it is an addictive drug & most need it once they start taking it.
I am off Kolonopin now for almost 2 weeks & my pains have increased so much. I am only staying off it to prove I could take all the pain & not be addicted to the drug.
You do get to a point where life is hell & at the end it does not matter what is addictive & what is not, as long as it helps.
Posted by Carmen (Member # 42391) on :
If I lived in Europe I would be heading to Germany which is reported to excell in lyme treament even if i had to camp in a walmart parking lot.
Lyric is a very dangerous drug. look into ozone theapy, which is widley available in Germany, along with other detox protocols.
The only difinative test for lyme is a dark field live blood analysis or even a blood study of more conentional methods but few docs do the conventional one. Dark field is common in germany.
My doc finds the dark field live blood helpful to determine if a treatment is being effective, which of course is hugely helpful psycholgically to the patient.
Neuro symptoms can be healed and the pathway may be different for each person, but detox and effective distruction of the spirochete is all part of it.
If you can watch this film "Under our Skin" on netflix or hulu you will see a woman who got past it.
The film does not discuss treatment methodology though, but they did feature Dr. K.. who focuses on alternative therapies, detoxification and alternative antiseptics to kill lyme. Much of what he does is known in Germany.
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Breaking this up for easier reading for many here -
[ 10-17-2013, 09:38 PM: Message edited by: Robin123 ]
Posted by lax mom (Member # 38743) on :
Can you very, very slowly wean off the Lyrica?
Posted by Robin123 (Member # 9197) on :
Doesn't sound to me like you're treating at all.
Not that you have to rush into treatment - you can find out what your options are, as in, are there any doctors in Europe who treat like ILADS doctors? You can ask at www.ILADS.org.
Or who else could you see for alternative treatment. There's a Dr W in Germany who's supposed to be very good.
Or, you can explore with folks regarding which alternative treatments you'd like to try next.
My doc also does bloodtesting to help see what next to treat me for.
The goal is to discover our personal bingos. When we find treatment that works for us, then we can do more of our life again.
Posted by fred0 (Member # 37371) on :
Thanks, no, you're right I'm not treating.
I'm masking. This might sound strange but I have
such harsh eye muscle pain, eye lid retraction,
pulsing muscles around the eye that I'll take just about anything to calm it down, even at the detriment of my health.
Today actually I have an appointment to see a botox specialist.
To see if he can do something just to relax the muscles around the eyes,??
I'm a little scared to try anything but the symptoms are so severe.
It's so severe when left untreated that it has caused a very strong general anxiety disorder and
I stop going outside, to social events,etc..
I have not been able to hold a job since I was a
young teen because I quit them allout of anxiety that's caused by my symptoms.
I took psychopax (valum drops) 2 years ago and they helped also alot. Of course, I had to get off
those because they are highly addictive.
Then they put me of Lyrica, which had also helped and made it possible for me to at least function in life.
Why I don't treat the Lyme full blast? I don't want to offend anyone here. I just don't know who or what I can trust.
I read about some of the protocols and then I google them. I tend to really search things a lot online.
There are enough sites that question many of these protocols so it make me skeptical. Who to believe?
I also don't treat because I'm scared to make the disease even worse.
I was just trying to keep it managable.
Therapies I've tried in the past have only made it worse, so I'm scared to continue trying.
I tried a chiropractic 2 years ago. I thought to give it a try sinceit had helped me when I tried it years ago.
This chiro session really screwed me up!! Actually it was after this chiro session that I started taking anti-anxiety meds. to compensate the damage..
I really don't know what to do at this point.
Posted by GretaM (Member # 40917) on :
Hi Fred,
Well, I treated symptoms for a long time too. Like 12 years.
Things kept getting worse, symptom-wise.
I tried Botox too. It is very pricey and din't help me. Doesn't help that one pays the doc just under $200 just for injecting it-then the cost of botox and supplies on top of it.
I had more relief after 4 weeks of doxy and tinidazole in my symptoms, than 12 years of every prescription out there.
Too bad conventional docs are more into treating symptoms, rather than treating the causes.
But there's more money in symptom management. Cause you keep coming back.
Posted by Robin123 (Member # 9197) on :
I drink mangosteen juice to stop all my Lyme eye symptoms. When I started drinking it, all eye symptoms cleared up in 24 hours!
It's an anti-inflammatory juice. You can find it in healthfood stores and online. I like the Mango-Xan version as it's the most tart.
We're all different in how we respond to anything. It could be a simple experiment for you to try.
Posted by surprise (Member # 34987) on :
I know you're in Europe now but, since they took you off the Lyrica and now anxiety seems to be the largest issue,
can't they start you on an anti- depressant type of pharmaceutical to help?
Of course I'm not saying don't treat the Lyme disease, but right NOW you seem to be in serious trouble, can't go out at all, etc.
So let's get that problem fixed, quell the anxiety, so you can sort out the rest.
Cymbalta anti- depressive is suppose to help anxiety and pain...(that's what I hear, never tried it) Hang in there-
Posted by fred0 (Member # 37371) on :
Thanks, 'surprise'- you're right. Right now the anxiety that comes from the eye muscle manifestations is the critical issue right now.
Lyrica gave me the luxury of being able to function. Actually do things that I like.
Now my legs are being clipped out from under me.
Sadly, I can't handle anti-depressants. Any SSRI or the sort seriously compounds the symptoms.
Maybe another proof that it's a neurological problem.
Right now I'm going to try a muscle relaxant. Probably also a little rough on the kidsneys.
I would like to stress that I haven't treated Lyme farther because I'm scared to make things worse than they are.
Like stirring a wasps nest. Every time so far I've tried to treat it has made it worse.
ABX were working. After a got off things just started falling apart even worse than before.
The same happend with the chiro and co..
But I will be trying that Mangosteen:) thanks everyone.
Posted by surprise (Member # 34987) on :
I don't know these personally, but I read a lot, I've read that if regular type SSRI's are an issue, then
Wellbrutin may help, and in a different class all together, Klonopin seems to help a lot of Lyme people.
Ask the Dr.s for help.
Posted by droid1226 (Member # 34930) on :
I totally disagree. If Lyrica or valium is helping, why are you choosing to live in hell because something is addicting or masking?
I'd take ANYTHING that helped. And also treat while doing it. Tomorrow isn't promised. Live today.