I have been treating the Lyme heavily and was doing very well in the summer but now an doing so poorly again.
I am wondering if others have been on benzos and realized they were hindering your Lyme recovery or making you sick?
I am now starting to taper off the Ativan but am havi g a really tough time of it.
Has anyone else found that benzos made them worse then got off of them and eventually felt much better?
Found out some of their symptoms were actually from the benzos and not the Lyme?
Posted by Robin123 (Member # 9197) on :
When I didn't know what was going on, I was taking Ativan, and it was hard getting off of it, because our body doesn't know how to function after doing it.
My recommendation would be to stay away from it, since it's addicting, and find other sleep aids.
I now take 25mg benadryl to go to sleep, and up it to 50mg if needed. At least it's not addicting.
Posted by Maya12 (Member # 36392) on :
Hey robin did you find that the Ativan made you feel worse mentally or physically and what was it like getting off it , what sx did you have?
Do you now feel better off it?
Posted by LSG Scott (Member # 21624) on :
made me worse, i hit benzo tolerance and started to have withdrawals while i was still taking it.
took me being off benzos 18 months to get rid of all the messed up brain stuff, best thing i ever did was get off them
worst hell of my life and i have tried to warn anyone that will listen, do a search here for me LSG scott and benzo you will find a lot of info
DON'T TAKE THEM SOONER OR LATER YOU WILL WISH YOU NEVER STARTED TAKING THEM
if you are on them man, you are in for a real hell ride getting off the benzos, so do it safe and slow. do not go cold turkey, it can kill you hear you can learn about the horror they can cause and how to get off them safe
The reason Benzos can be so hard to get off of is because they either have too short a half-life or they only come in too high a dose.
With a short half-life, if you cut back on the frequency of your dosage... like from twice a day to once a day, you get peaks and valleys, and during the valleys the withdrawal symptoms are awful.
If the pill size isn't small enough, it's impossible to step down slowly enough.
I know people who have used the advice on this website
The thing that works is to switch to an equivalent dose of valium, because it has a very long half-life (no peaks and valleys) AND you can get it in really low dosage pills (so you can taper off really slowly.)
The website as all the info. I helped a friend show all the information to his doctor and his doctor designed a schedule.
I think at the end he was taking tiny pieces of valium pills a couple of times a day, then once a day, then every other day.
It worked.
Good luck.
Posted by Robin123 (Member # 9197) on :
I actually got addicted to it 4 times before I figured out to take benadryl to go to sleep. During withdrawal, I really couldn't sleep, for a couple weeks, so I do not recommend it! It's addicting. This was at the very beginning of symptoms for me.
Posted by mlg (Member # 35383) on :
I see 3 lyme literate doctors for separate things. One is a neurologist/psychiatrist. Benzo's really helped me take the edge off. I was never on any drugs sleeping pills, etc. before I got lyme. As my treatment progressed I took less anxiety medicine. My worst symptom I would say is insomnia. I needed to take benzos nothing else would work, but as treatment progresses then you should be able to start getting off or decreasing benzos.
Alternative medicine: lemongrass tea hylands nerve tension hylands calms acupuncture b-complex motherwort tea infrared sauna heparin injection juicing
Posted by phyl6648 (Member # 28522) on :
I have been on xanax for about 8 years and they have been a great drug for me. Helps with my horrible anxiety and to tolerate lyme symptoms. I am on 1/4 mg four times a day.
Before lyme I took the same dose for over three years everyday and had no problems getting off of them. As things got better in my life I would forget to take them and before I knew it I wasn't taking any.
We are all different and what works for one may not for another. My LLMD that I was seeing and still do phone consults has no problem with me taking them,nor does my PA which prescirbes.
On bad lyme days I can increase my dosage. They have been a great med for me.
Posted by DaveNJ (Member # 17362) on :
i will probably get shamed for saying this but here is how i got off benzos: smoke a little Pot. has the same effect at night without the side effects. as long as you don't go overbaord and your not be tested at work i find it works just as well.
obviously this will not assist you during the day if you have to work or drive...
be sensible
and of course i am not talking about getting baked, stoned or whatever..
GABA helps. So does "True Calm" (by NOW). PLP (= active B6) helps convert glutamate (accelerator) to GABA (brake). The other "Bs" too, but niacinamide instead of niacin. Folinic acid = B9. L- theanine helps. Daily "multi" that has potassium and selenium in it. Ca and Mg. Vitamin C - timed release is "stomach friendly". Vitamin E. Zinc. Chromium picolinate. Omega 3s. 5HTP.
Exercise helps - walking, stationary bike riding, yoga. Meditation CDs help a lot - "Deep Relaxation" or "Deep Meditation" (brain wave therapy)- listen with headphones.
Another suggestion from my copy of "Prescription for Nutritional Healing" (Book)suggests SAMe, but not if bipolar and not if taking anti-depressants.
Bottom line: vestibular imbalance = serotonin level out of whack with these 3: dopamine -> norepinephrine (= anxiety)-> epinephrine (= adrenaline = fear, fight, flight.
Some people are genetically geared towards high levels of glutamate (accelerator, and can be used as a brain fuel!) + adrenaline. Type A, smart, driven, but prone to depression and anxiety. These persons often need more serotonin "help".
Posted by jlcd1 (Member # 18138) on :
What about atarax? I was given it for anxiety when I was breastfeeding my son before I really knew what was causing the anxiety.
I dont think its a benzo just an antihistamine. I still use it.
Posted by oceangirlSA (Member # 40873) on :
I started taking Xanax for severe pain in my face and insomnia which developed before I knew I had Lyme.
It helped me a lot, but I developed interdose withdrawal symptoms about a year after taking it, and it really complicated my Lyme treatment.
Many drugs are metabolized on the same enzyme system as benzodiazepines, and I found certain antibiotics and drugs I was taking either increased or decreased my blood levels of xanax.
This led to withdrawal symptoms on the drug and severe gut pain which went on for about a year, before I realized it was the xanax that was causing all my problems. Stomach pain was one of my withdrawal symptoms.
My doctor crossed me over to Valium so that I could taper off slowly with fewer symptoms, and I have been tapering off for 6 months now and still have about another 4 to go before I will be completely off the drug.
After being on it for 3 years, I have had to go very very slowly with my taper, but I am doing much better.
I also take L-theanine which crosses the brain blood barrier and has helped with my taper.
Once I am off it, I will never go on another benzo again.
Posted by Lymetoo (Member # 743) on :
Atarax or Vistaril are great alternatives to benzos.
Yes, they are anti-histamines.
Posted by desertwind (Member # 25256) on :
Yup, bad news. Benzo w/d and interdosing tolerance w/d has many if not the same symptoms as neuro Lyme.
A lot of Lyme patients have very sensitive CNS/gaba -a /b receptors to begin with and benzo.'s will shut down the activity in a very short time period.
If you are on benzo do not take levequin or cipro as they are contra-indicated and can rev-up benzo w/d symptoms.
Even flagyl can cause an issue for those taking or in benzo w/d as it effects the gaba receptors. This is more case reports and anecdotal but something to keep in mind.
Even yeast can cause problems for those in benzo w/d as yeast produces a by-product of alcohol and alcohol binds w/ the same gaba receptors as benzo.'s. Kill yeast and increase w/d and inter-dosing w/d and tolerance symptoms.
As mentioned earlier in this thread certain meds can increase the level of benzo.'s in your system. Biaxin is one of them.
Crossing over to a long half-life benzo such as Valium is the standard method to taper off of the short acting ones such as xanax. No more then a 10% cut every 2 weeks or you can develop protracted benzo w/d syndrome which can last for years.
For some, benzo.'s are pure hell to come off of and can lead to permanent damage to your gaba receptors if you are not careful in your taper.
Not giving medical advice but my post is informed by extensive training and experience in chemical dependency and treatment. I have worked w/ numerous Lyme patients who were at the same time struggling w/ benzo dependency and it is a raging bear to deal with.
I know for some, benzo.'s are not an issue and can be taken w/o incident but just be aware of the dangers.
Best resource is the Ashton Manual. Worth the read.
Posted by Maya12 (Member # 36392) on :
Hello to everyone. Thank you so much for answering my thread and I respect all of your stories and opinions about benzos.
I myself feel that the benzos are now making me sick since I was doing so well in the summer with lyme treatment and then got sicker with no reason especially since I continued to treat heavily.
I think that I hit tolerance and now as I slowly taper off I am actually just starting to feel a little bit better. I still feel really out of it and my memory is shot but the anxiety has actually lessened a bit.
I am slowly tapering at 5% every week to week and a half so I am taking it very slowly.
I cant wait to be off of this stuff be realize that I do need to take it very slowly to let me brain heal and would never cold turkey as I think it would kill me.
thanks for all the help and advise.
Posted by lancaster (Member # 7306) on :
Hi Maya...you have had many great replies here. I was on Klonopin for 11years before I realized that I was in severe tolerance and interdose withdrawal. Many of my so called Lyme symptoms have resolved as I am lower in my benzo taper.
Most doctors and PAs do not realize that the 2mg of Klonopin I was on was equal to 40mg of valium a day.
I started tapering Klonopin by switching to a longer acting benzo which is Valium (found out the that was not necessary but was following the Ashton Manual). I am down to 2mg of V, it has taken me three long frightening, painful years. Benzos should be outlawed.
I am doing a Liquid Taper with milk. I drop my 2mg of V in milk and then withdraw a small amount everyday and then divide that in 4 even doses throughout day.
I would recommend reading the book Anatomy of an Epidemic by Robert Whitaker, it is about psych meds in general. Good sites are Beyondmeds.com and Madinamerica.com.
Go slow and I would suggest milk tapering if you are interested I could get you and invite on a close group on facebook, they have helped me immensely through this. Most doctors are clueless. If they weren't they would have never allowed me to stay on for 11 years. It states on med sheet only to be used for I think 4-8 weeks somewhere around there.
Maya over the summer did you go on Cipro..desert wind was right about that causing a withdrawal syndrome. I nearly ended up in the ER and was told it was a herx but now know it was due to the fact I was tapering and the Cipro allowed more valium to leave my body I was a mess, dizzy, sweating profusely, blood pressure high, burning was bedridden for weeks. My Lyme doc said it was babesiosis and Lyme herx...now I know but how many other patients may have this experience and never know.