Back in Feb. I was on Mepron and Azith. I take Clonezepam (Klonopin) and started fading it. I was going to ski with my kids on Feb vacation and had a local cortizone injection in my lower back so it wouldn't hurt during skiing (have had injection once before with no affect on Lyme symptoms). Skiing went really well. I came home and faded out the Clonezepam to 0. Four days later: heart palpitations, shortness of breath, hands and wrists really hurt on the computer (no increase in of computer use). So I go back on Clonezepam and all symptoms clear except the hand/wrist problem which gets worse (my job is computer programming and so I couldn't take a break from it). Toward the end of March I also noticed some new arthritis in my big toe and heavy fatigue.
In April I stop Mepron/Azith and go on Rocephin IV + Flagyl. I felt horrible for the first 5 weeks. Heavy fatigue, more joint pains, hands do not get better and all my other Lyme symptoms are at their worst. The only positive is that I haven't had a migraine (I was having them every 2 weeks when on Mepron). I had a couple weeks in May where I returned to my usual level of Lyme pain but then things started getting worse again with crushing fatigue and pain in arms,wrists,hands and feet.
So I switch to tinidazole instead of Flagyl. Feel crappy for a few days. Its now June and I go to my LLMD and he says "this is not what we want to see. In the 3 years of oral antibiotics spanning many classes and the Rocephin IV you have never felt that any of these drugs have helped. I think we need to stop treatment."
I was kind of crushed and had no one along with me on the appointment to grill him with questions like "does this mean I don't have Lyme?" "what do I do now?" . But I was on the road driving 2.5 hours home before I knew it.
So now I'm trying to sort this mess out myself because in a couple weeks the PICC line comes out and I'm not putting Rocephin into me anymore and I'm somewhat happy about that since it hasn't helped.
So what next?
I had a heavy metal test last week and am awaiting results.
I am suspecting YEAST. The fatigue, the worsening joint pain. I started Fluconazole a few days ago.
Anybody have any other ideas. I'm kind of starting new here if the LLMD is telling me I'm stuck.
posted
IMO, it sounds like you weren't treated aggressively enough. If you were only doing let's say Mepron and Zith, the Lyme isn't getting hit.
I think that you were herxing Lyme with the Rocephin and Flagyl. I think you should find a new LLMD. I wouldn't give up on it if you are still that symptomatic. The way that you explain it, it sounds like you were having the monthly flare.
Posts: 845 | From Northeast | Registered: May 2011
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posted
Oh no, never do steroid shots!! Klonopin did not do that, the steroids did.
AND, you need more time to get off of Klonopin or you can have grand mal seizures. You have to cut back over a long period of time. A neurologist could give you a schedule to get off of it if you want to do that.
Rocephin doesn't always work long term for everyone. Clindamycin is what a lot of LLMD's are switching to now.
If something isn't working, you need to change up the abx and maybe also the LLMD.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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lax mom
Frequent Contributor (1K+ posts)
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posted
The Klonopin withdrawal could make you feel worse. I have had that happen to me. My nervous system calms down on Klonopin and that helps all of my other symptoms calm down too.
Like faithful said, you need to wean off much, much slower.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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hiker53
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posted
I am weaning back on klonopin right now. I take it to control my myoclonus jerks and I only take a small dose. However, decreasing it a tiny amount has made me feel lousy.
The doctor told me it is easier to wean from large doses, but once you get down to trying to get rid of the small dose it actually becomes harder.
Hiker53
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8879 | From Illinois | Registered: Aug 2004
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posted
I've been on Klonopin for about 11 years. It was before Lyme was a part of my life. It helped me sleep during an anxious period. The therapist who put me on it never liked talking about my getting off.
I decided to drop it this winter because Lyme makes me tired enough that I can sleep fine without help.
The problem is that going of a benzodiazapine can cause some people (non Lymies) a lot of symptoms that are Lyme-like. So I'm guessing it threw my system into disarray. The cortizone injections may have done something too but I've had them before with Lyme and it hasn't caused any kind of flare.
posted
Now as to my LLMD. I went to the famous guy in **** for a year and dumped him because he had only two treatments that he applied to everyone and they didn't work for me.
I then went to **** and got every category of abx and then finally IV but felt that we have someone who is kind of checked out from new research and from patient follow-up. So I added in the LLMD from **** (ex ILADs pres) to my team of non-communicating drs. Lots of talk about how I'd be cured at the first appt.
I hope no one is going to yell at me for these loose refs. If so, I'm sorry, but too often whenever someone doesn't like the sound of what a doctor is doing with someone they say "find another LLMD" maybe assuming you're going to some quack. This solution gets to be an expensive merry-go-round. If someone isn't fixing you is saying treatments have not worked, I'm not certain that is criteria for saying its time to find someone else.
So when ex ILADs pres, says "You're stuck" , I say "Does this happen to other patients you've had?". he says "maybe 5%" When I thought about feeling worse for the last 4 months while on abx and then generated the hypothesis of yeast, it does cause me disappointment that the LLMD did not suggest this. I'm lucky I've got bottles of Fluconazole lying around to take some to test out my idea.
In any event, it costs $600 - $900 for an initial visit with a new LLMD so I can't just keep moving from one to another looking for a savior.
Here is a BIG issue that does not get much play: TREATMENT FAILURE.
We all face the possibility of it.
The name of the book is "Cure Unknown" right? No guarantees implied.
We don't know that everyone is going to get well. If it was a matter of just staying the course and everyone got well, then I don't think this forum would have so many members that have been here for years.
How many people get all the antibiotics and all the co-infection meds for years and get nowhere or maybe get worse?
How many people are stuck?
I know it doesn't make a story with a happy ending and the Lyme Disease community is trying to use happy-ending stories in addition to sound research data to promote long-term abx therapy but people have to realize there are also data points that don't support the story.
My LLMD has a movie playing in his waiting room about a beautiful young skier who lost her career to Lyme. It took her down. No more skiing through neck deep powder with her friends. She fought it with IVs, rest, healthy food, time off from the competition circuit, and slowly returned to being superwoman and was back on the ski team and competing for Olympic gold. Great movie. All choked up. But its not my story. How many of you don't make for a great Hollywood script (yet)?
So I know this sounds negative and I am in a negative frame of mind. I do plan to start researching other avenues and treatments but I just don't think the suggestion to dump a good LLMD is good advice and then she/he tells us, "I'm sorry but I don't think I can solve your case ." do we now lose all faith in him/her and find someone else? I certainly feel that desire but I am also running out of money and patience to keep a calendar full of appointments and long drives and putting strange chemicals into my body hoping that they will do something good and they never do.
posted
Yes, Marshall62, I for one, along with many others that I know, could not make a feel-good Hollywood movie. At least not yet.
I am fortunate to be able to live my life, I'm not home-bound, at least not now, so thankful for that. However, I feel like crap every. single. day. I buck the craziest of neuro symptoms every. single. day. It waxes and wanes in varying degrees, but always present. I won't bore you with my list of symptoms, I'm sure you're familiar with many. I've been through, hmmmm...4+ "LLMD's." IV for 9 months, orals for almost 3 years, anti-parasitics, blah, blah, blah. Agreed, some of us are "stuck." A feel-bad movie, if you will. I don't mean to sound negative, just reality for me, unfortunately. Though it's been going on for so long now, I think the stress of the unknown, the staying sick forever etc., takes its toll as well. Hope you find the "cure." TS P.S. If you do, please let me know! Posts: 566 | From West Coast | Registered: May 2008
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BoxerMom
Frequent Contributor (1K+ posts)
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posted
quote:Originally posted by marshall62:
... Its now June and I go to my LLMD and he says "this is not what we want to see. In the 3 years of oral antibiotics spanning many classes and the Rocephin IV you have never felt that any of these drugs have helped. I think we need to stop treatment."
If you relayed this conversation correctly, this could be your problem.
If your doc can chart that you feel you are making progress, s/he has some protection from lawsuits or Med Board reviews. If you state that you feel none of this is helping and your doctor keeps treating you (outside of IDSA guidelines, as we all know), this can mean big-time hot water.
SO MANY docs are under scrutiny or worse. To continue this type of treatment in a non-responder is extremely risky.
If you want to continue treatment, you need to make sure the doc can chart SOME progress or symptom relief. Even herxing, to confirm the meds are working, is enough to make it worth continuing.
I don't mean to drop this situation in your lap or imply that you are at fault. The Lyme situation is simply absurd. As patients, we have to take a ridiculous amount of responsibility for our own treatments.
If you really feel that the meds aren't working, maybe switch to herbs and/or Rife for a bit. Many find symptom relief when the herxing abates so inflammation can go down.
I hope you don't take this post the wrong way. Again, not meaning to imply that you are at fault.
posted
When you have Lyme most do not realize for years that your body spasms and tightens your muscles. Klonopin is used for stiff person syndrome which is similar to the spasms in Lyme Disease
Posts: 1 | From Pa. Oh. | Registered: Jun 2013
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Lymedin2010
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posted
I just got off klonopin, after taking it for months. I just cold turkey stopped & I am on the 3rd week.
By day 2 & 3 I had so many more exacerbated symptoms. Symptoms that I had not had to that extreme since the beginning of treatment. The first & noticeable ones were vibrations, twitches, muscle and appendage jerks.
By week 3 I had the returning of muscle tightness in my neck & back. It feels like someone is squeezing my neck. I had difficulty swallowing for one day, another symptom that I did not have since starting treatment.
More muscle burning, numbness & burning of my arms, legs and new burning of my wrists & ankles (for the first time ever) & eye/vision vibrations.
It is almost as if Klonopin lullabies the bacteria to sleep & they become more sluggish and are unable to aggregate effectively.
Of the 3 weeks I decided to take 1 pill on a night I had trouble sleeping. The next day was amazing. Still all lymied up and infected, but the symptoms all from a 7-8 to a 3-4.
All the pains and weird symptoms were much more manageable & I could take my mind of the pains when I was presented with something interesting.
Posts: 2087 | From NY | Registered: Oct 2011
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Abxnomore
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posted
It's dangerous to stop Klonopin cold turkey or in a few days. If you have been on it a long time, one should wean off very, very slowly over the course of a year or more. Stopping suddenly could lead to long term symptoms that don't resolve, severe anxiety, seizures and many other serious problems.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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Lymedin2010
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Member # 34322
posted
Yes, I have heard that about Klonopin. For some reason I don't react to ABX & most of the herbs the way others do.
I determine afterward that I had Lyme for many, many years & simply no reaction until they were clogging my veins, arteries, & capillaries. Only then did I get the symptoms.
I am on a very small dosage & did not experience severe anxiety, or seizures. What I did experience is many returning symptoms before I took Klonopin & when I started treatment.
Posts: 2087 | From NY | Registered: Oct 2011
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posted
benzo withdrawls are just like Lyme and that's why if you can, get them out of the picture! because you can be on them ie(still taking them) and enter tolerance withdrawal,
now this can make getting better a very confusing ordeal as after some good and long Lyme Treatment, your Lyme load might be way down but without knowing it, you enter tolerance withdrawal, get some new or return of old symptoms and think oh-no my Lyme is getting worse, BUT if it's not the Lyme, well, now Your screwed because your Lyme doc knows nothing about how bad Benzos are, in fact he probably prescribed them to you, he will keep treating and you will stay sick, that is why it is better not haveing them in this confusing mix.
i asked for feedback to see how many people took them and got better,
because how many times have you heard a friend of friend type story about people having Lyme, had good Lyme treatment and there fine now, i believe these success storys exist, i just bet they didn't have benzos in the mix
i lived this horrible scenario above and when i finally found out i was in tolerance withdrawal i got off C/T (warning don't go cold turkey it can kill you!) i was lucky, i endured 6 months of withdrawal hell but i'm much better know,
so i just feel compelled to tell everybody to remember that you need to be your on heath advocate about everything, not just Lyme
god bless guys
Scott
-------------------- LSG Scott Posts: 513 | From Boston, Cape Cod, Mass | Registered: Aug 2009
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Lymedin2010
Frequent Contributor (1K+ posts)
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posted
Interesting. Those with experience with Klonopin really know the dangers first hand. I will have to take this more seriously then.
No one warned me about klonopin, outside this website. Not my neuro, not my LLMD.
So would you think I should go back on it & slowly titrate off of it within the next few months.
I was taking .5mg tablets. At first 1/2 tab, then 1 tab for a few months & then back to 1/2 tab for 1-2 months. I felt a bit worse with 1/2 tab & always better with a full tab.
Posts: 2087 | From NY | Registered: Oct 2011
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lax mom
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posted
I was on 0.25mg every single night for the last year. Many months, I also had to take .25 in the AM.
I recently switched my adrenal supplement, which helps calm my nervous system, and was able to slowly withdraw from the Klonopin with no problems.
I hate it that I always felt better and had more energy during the day when I took Klonopin. However, I don't want to confuse withdrawal with Lyme.
Lymedin2010: have you been to this website? It talks about how to withdraw safely. I'm gonna need it when I stop my Effexor. That withdrawal is he//ish.
Lymedin2010
Frequent Contributor (1K+ posts)
Member # 34322
posted
I have never seen that site, but will check it out now.
I started taking it because of so much vibration & body disturbances. It was impossible to go to sleep at night & I would stay awake and be caught up in a hellish cycle.
No sleep, feel even worst & it went on from there until klonopin. Now I am on Lunesta & WOW. It gently puts me to sleep & does not weigh me down. It feels natural.
I have taken valerian root & some other sleep meds, but they just drag me down & it does not feel right.
I have tried melatonin too, but it hits & then wears off. Can't beat the gentle hug of lunesta & I was trying to remove klonopin since this new found drug.
Posts: 2087 | From NY | Registered: Oct 2011
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lax mom
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posted
You are so right Lymedin2010. I tried the Valerian Root, then the L-theanine and they completely weighed me down. I felt drugged.
What is up with Klonopin giving me energy and allowing me to be half-way functional?
I seriously feel like death now. POTS is flaring crazily. Can't sleep. The Cortisol Manager isn't cutting it alone.
I cannot take another second of this misery. I am taking the Klonopin tonight and getting some sleep.
posted
How long on the drug before it's hard to stop quickly?
Posts: 922 | From Philadelphia | Registered: Sep 2012
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Phoiph
Frequent Contributor (1K+ posts)
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posted
marshall62...
I can relate to your story. I was also called an "antibiotic failure" and left by doctors, including LLMD's, to fend for myself.
I was also told "not everyone gets better", and that there was nothing more that could be done for me, and that I should accept my situation.
Nobody could ever explain to me HOW someone is supposed to just "accept" extreme physical pain 24/7, physical disability, losing one's cognition, livelihood, and life as they knew it, etc. (I was homebound for over 5 years straight after having lived a healthy, drug-free life which included being a runner for over 17 years).
Fortunately, the story doesn't end there for me. I am now completely well, and am drug free (I was on klonopin also). I have my life back...no thanks to any traditional Lyme protocol or intervention. None of that worked for me either, although I tried nearly everything.
I got well by treating myself with mild hyperbaric (and supplemental oxygen). You can read more on this thread:
posted
I want to add that if you have been on benzodiazepines for a long period of time, even when you are finally off them, you can have symptoms of withdrawal for 6-18 months after you stop taking them. Some people have protracted symptoms of withdrawal for up to 5 years after stopping them.
There is an excellent website to help with benzodiazepine withdrawal -www.benzobuddies.org
There is also a manual online, called the Ashton Manual, which you can google, which was written by a UK MD who ran a benzodiazepine withdrawal clinic for 12 years. She wrote this manual on how to withdraw slowly from benzos, and what all the withdrawal symptoms are.
Unfortunately the withdrawal symptoms are EXACTLY the same as Lyme disease!
I know this because I was put on Xanax for sleeping problems and started experiencing interdose withdrwal symptoms from it during my Lyme treatment and never seemed to be getting better.
What I did not know was that the antibiotics and herbs I was taking were either increasing or decreasing my blood levels of Xanax, and increasing all my symptoms.
Many herbs and medications interact with benzodiazepines, and can cause you to go into withdrawal, EVEN when you are still on the drug due to the fluctuating levels of the drug in your blood.
I had to do a TON of research to find out which herbs and abx were metabolized by the same pathways in the liver as benzodiazepines. Biaxin, Rifampin, Japanese knotweed, Milk Thistle and many others can increase or decrease your blood levels of benzodiazepines.
Benzodiazepines are muscle relaxants. When you withdrawal from them your muscles can go into spasm and cause more pain. They also affect the nerves all over the body, including the gut. The can cause brain fog, gut pain, muscle pain, memory loss and many other symptoms.
I am now slowly coming off my benzo with a very controlled taper, because I was not getting better from Lyme, and my doctor said it was necessary to get off it as it was interfering with my healing.
All benzodiazepines affect the CNS which can become hyperexcitable when you try and withdraw from them, or experience interdose withdrawal symptoms.
The shorter the half life of the drug, and the longer the time you have been on it, the more trouble you will have with these drugs.
None of my doctors had a clue that the Xanax was causing so many symptoms in my body. I finally figured it out myself after going into cold turkey when I tried to quit my benzo.
My prescribing psychiatrist never warned me all this could happen but my LLMD read the Ashton manual when I gave it to him, and was really happy that we finally found what was blocking my progress.
Once I am completely off it, I will never take another benzo in my life again.
Posts: 187 | From Connecticut | Registered: Jun 2013
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Phoiph
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posted
Awesome post, OceangirlSA.
I suspect a lot of the drugs/herbs/supplements people take may actually impede their healing...particularly due to interactions between drugs/herbs/supplements, and also as a result of toxicity due to unknown pathway defects that each person may carry genetically.
I believe that my inability to take medications/supplements (due to severe toxicity/sensitivity) for 5 years prior to starting hyperbaric may have actually worked to my advantage, because as ill as I was, at least I wasn't continually ingesting more and more toxins which may have been working against the hyperbaric treatment I was doing and impeding progress...
Posts: 1880 | From Earth | Registered: Jul 2013
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Abxnomore
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posted
Ocean excellent analysis. So many doctors are clueless about benzo's. As you mentioned the key is to wean off very slowly over a very long period of time. It could be extremely dangerous, if you don't. Also, doctors put you on benzo's and then most give no guidance about how to get off them.
I read the Ashton manual, too. It's excellent. Here's the link for those who might need it:
Lymedin2010
Frequent Contributor (1K+ posts)
Member # 34322
posted
Lax Mom: "What is up with Klonopin giving me energy and allowing me to be half-way functional?"
I feel exactly the same. Klonopin took away some of my more disturbing symptoms at night & I was able to feel slightly better & enough to go to sleep on.
It is just like you said, with it I feel slightly more energetic. Without it I find it hard to do anything with the tiredness & exhaustion. Without it I have full blown fibromyalgia, limb jerks, twitches, bubbling...etc, all on a much more disturbing level.
I could almost swear that it puts whatever is in me to sleep & makes it less active. After not taking it for days & then finally taking 1 pill I felt so much more better the next morning.
By day 2-3 slowly back to pain & disturbance city.
Posts: 2087 | From NY | Registered: Oct 2011
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Abxnomore
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posted
It's a muscle relaxer and an anxiety reducer that's why it probably helps you feel better and it's probably helping you sleep. If you get better sleep that's always a plus.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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posted
Klonopin is extremely addicting and when you reach tolerance you start to go through withdrawal. At first it does mask the Lyme symptoms and you sleep better but then everything gets worse.
But if you are addicted DON'T stop cold turkey. You could have seizures and get suicidal.
Posts: 472 | From New Jersey | Registered: Dec 2007
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Marz
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Member # 3446
posted
I'm wondering if some people here don't have the anxiety with their lyme and co's that some of us do.
I remember way back when I first got sick if I wasn't at work I was sleeping. If I had anxiety I don't remember it except for the normal anxiety that comes from pain.
When I relapsed years later, I think maybe bart came out and caused the anxiety. That was when I found an LLMD and at first resisted the Rx but finally filled it.
I tapered off a few months ago and would not go back on--but am not sleeping nearly as well.
Still on ambien which is a baby benzo, but need right now.I'm getting dark circles under my eyes because I'm not sleeping as deeply.
I'm working on adrenals and doing a ton of other things, but nothing is working.
The reason I got off k. is because I accidentally left it behind for vacation and after 3 days had insane anxiety. So I went back up and did a very very slow taper.
I was at very low dose, hadn't reached tolerance but knew I was dependent.
I think the 6-18 months of rebound symptoms only happens if one cold turkeys (?) Not sure if that's what Ashton says.
But I did have an easy time tapering.
I don't think the anxiety I'm experiencing right now is due to withdrawal because I have a return of bart rashes too.
And I despair sometimes that I'm not getting the good sleep I need to get well.
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