posted
I'm sure you're all busy so I'll get to the point.
I probably have Lyme, have a very positive iGeneX Western Blot,
developed severe persistent anxiety due to brief unrelated antibiotic treatment (Flagyl),
started taking an anti-anxiety med (Klonopin, a benzodiazepine), the drug has worsened my anxiety severely,
and now I need to get off the Klonopin before I can move forward with any other treatment for my numerous other conditions, esp leaky gut,
and it's at a crisis point with the symptoms and I need professional help to get off this benzo, and I need it fast.
My family and I are desperately googling for benzo rehab clinics who have dealt with Lyme (or related) patients before (and the delicate touch it requires),
but nothing beats word of mouth. Can anyone recommend actual clinics, or resources to find them, or other people to contact who may be of help?
-------------------- Positive Western blot Antibiotics caused severe anxiety Benzos made anxiety worse Now need professional help to get off benzos Posts: 2 | From Texas | Registered: Jan 2015
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posted
I don't know of any .. but in the meantime... I personally would take tons of magnesium. Glycinate is good. Anything but oxide.
It will take a long time to get off of klonopin... I hope they will take it slowly with you.
God bless!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- There is a place in Dallas that is for chemically sensitive patients -- I'd ask them if they know a clinic that fits.
They will certainly understand as (while they do not treat lyme) they have had many patients with lyme - and patients who are highly sensitive to even what most might think basic, easy Rx, even household items.
Another advantage to starting there is you might find someone who is truly literate about the liver -- AND maybe also someone who is LL. Many doctors do not fit any of those criteria, actually.
Here's the detail (next post): -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Regarding anxiety:
Benzodiazepines are very ototoxic. And that can trigger anxiety for a couple different reasons.
1. the toxicity - for some more so than for others
- Klonopin (clonazepam) requires the liver's detox pathway Cytochrome P-450. Many with lyme have that pathway hampered up so taking drugs that require it work harder (when it just cannot) can create all kinds of anxiety.
2. the way benzodiazepines (and other drugs) mess up the inner ear / balance system. When our balance is off kilter, even a tiny bit, the body can go into a sheer panic.
Klonopin is a sedative, an anticonvulsant & that relaxation response greatly affected my balance . . . and that sent all my body systems into a tail spin. I simply could not tolerate it. My liver could not manage it, nor could my inner ear system.
Now, even "just" lyme can just toss our balance system into a whirlwind and so can other TBD (tick borne disease). And so can many drugs that sedate us.
More detail here. Go to the last couple of links for newer detail on books, etc.
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS
And the adrenal dysfunction that usually goes with lyme can also trigger anxiety. While treatment for lyme / other TBD can often make that disappear . . . in the meantime, adrenal support is also very important:
posted
I had horrible reactions to every anxiety medication they put me on. I'm in Texas as well. I'm not sure of a place like you want, but start looking up natural ways to detox. You also have to be careful with how fast you do it.
Do you have a lyme doc in Texas yet?
My anxiety is horrible right now. I think it is because my antibiotics got switched out, and I'm gradually going on more.
-------------------- Lyme flare June, July, August of 2013. Diagnosed September 2014 Lyme, Bartonella, Mycoplasma, Mono Posts: 595 | From Texas Crossroads | Registered: Oct 2014
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Tyler in Texas,
I could only pick out a few words in your post so hope I managed to find the most important ones that are most troubling.
Many here have trouble reading large blocks of solid text.
If you are up to it, so that more can read and reply, you might go into the edit mode and make some space breaks.
The tiny paper and pencil icon for editing is just across the top of each post. Typically, finished paragraphs are best to be no more than about 3 - 4 lines (that's about 5-6 lines as you compose).
You can always go back and adjust space after you see how it looks when posted. This way you will have more who can help you out. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Anxiety can also be triggered by food additives (or make it worse if the main anxiety trigger is something else).
See post: Caution: Aspartate; Glutamine; and Phenylalanine (3 excitatory amino acids that can be wrong for us when added as supplements, beyond a normal dietary level)
Seaweed has its own natural MSG and can be very excitatory -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
It looks like there are several rehab facilities in your state that offer specialized treatment for benzo addiction.
Just do a google search for benzo addiction center and texas.
Hope this helps.
Posts: 2549 | From never never land | Registered: May 2005
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Be aware, though, that it would be best to FIRST consult a LLMD or LL ND. At least find one and ask them who they might recommend for getting off klonopin.
For many reasons, it is so very - very - important to be working with someone who understand the very unique nature of lyme as your body is very different from someone's without lyme and treatment to get off benzos would need to be adjusted accordingly. IF at all possible.
At the very least, though, be sure you find someone who will offer nutrient support during benzo tampering off. Without the nutrient support, it could be so much harder to tolerate the transition.
Since lyme may be the initial trigger of the anxiety (you say that klonopin just "worsened my anxiety severely") . . .
attention does need to be paid to lyme treatment.
And you should also be assessed for other tick borne infections, especially bartonella & babesia. Bartonella seems to also cause a particular anxiety for many. And treatment can turn that around.
Many find such infection-induced anxiety diminishes when direct treatment is undertaken along with liver support, as many LL doctors advise.
WHY you need an ILADS "educated" or "minded" Lyme Literate doctor (whether MD or ND, or both) - starting with assessment / evaluation for lyme, OTHER tick-borne diseases, and other chronic stealth infections - and all that goes along for the ride.
Medical "models" explained here, as to differences in the ISDA & ILADS models of assessment & treatment - and exactly why it is so very important to know the differences. -
[ 01-23-2015, 03:47 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You mention "leaky gut" while lyme can cause "leaky gut" even all by itself, also:
h.Pylori is important to consider as a bacterial infection of the gut that can cause "leaky gut" and cause ulcers.
PROBIOTICS are essential. Be sure to have them on board, always.
GLUTEN; DAIRY considerations
Are you gluten-free? If not, it's a very good idea that may help both leaky gut and possibly lessen anxiety as well.
Going gluten free totally healed my "leaky gut" and also decreased depression & anxiety (although magnesium was key there, too). But I did discover I have the genes for celiac.
As lyme is no contest, you have the positive test and symptoms . . . know that many with lyme are advised by LL doctors to avoid gluten.
Some may have undiagnosed celiac (best determined by a GENETIC BLOOD TEST, no other test is as reliable nor as non-invasive).
Still, others just do better off of gluten at least until a good solid remission is reached. Some also do very well avoiding diary. More detail here, just scroll down
quote:Originally posted by Keebler: - Tyler in Texas,
I could only pick out a few words in your post so hope I managed to find the most important ones that are most troubling.
Many here have trouble reading large blocks of solid text.
If you are up to it, so that more can read and reply, you might go into the edit mode and make some space breaks.
The tiny paper and pencil icon for editing is just across the top of each post. Typically, finished paragraphs are best to be no more than about 3 - 4 lines (that's about 5-6 lines as you compose).
You can always go back and adjust space after you see how it looks when posted. This way you will have more who can help you out. -
There you go!
-------------------- Positive Western blot Antibiotics caused severe anxiety Benzos made anxiety worse Now need professional help to get off benzos Posts: 2 | From Texas | Registered: Jan 2015
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Stay away from the Sponaugle Clinic in Florida!! They ARE NOT what they would seem by their blurbs in their website. Search for comments on LN about it. Bad news.
Posts: 3771 | From around | Registered: Mar 2008
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
I could not get help to get off oxy after surgery
I know its not the same but i was in bad shape
Online i found four supplements to take to help plus they said a lot of mag...
I did it...it was hard...i dont know if i could have done it without the supps
I use vistaril for insomnia and it keeps my anxiety down
It helped my mom.a lot with very severe anxiety
The generic diesnt work for me
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
I got addicted to benzos four times in the beginning of all this, before I realized I can't do this anymore.
They are not a solution. You have to take more and more of it until it's hard to get off. I recall there was a period of time that it took for my body to be able to sleep on its own again and I had to ride it out for a few weeks.
After that, I did other things, but not benzos!
Posts: 13116 | From San Francisco | Registered: May 2006
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desertwind
Frequent Contributor (1K+ posts)
Member # 25256
posted
Look up Dr. Ashton and read the manual. This is the resource that is commonly used as a guideline.
Most recommended taper is 10% every two weeks and even then you may experience inter-dose tolerance w/d symptoms.
Many times, in the case of shorter half life Benzo.'s, the person slowly crosses over to Valium which has a half life of 90-200 hours and makes the w/d a bit more manageable for some people. A slow gradual taper is a must to help your brain re-adjust your GABA-A receptors.
You GABA-A receptors have been down regulated and need time to up regulate - sort of wake up.
Many Benzo w/d symptoms are very similar to lyme AND the stress of going through w/d can trigger or intensify Lyme and other TBI's.
Also be careful to avoid supplements that affect your GABA receptors as that can increase your w/d symptoms.
Check out benzobuddies.org for some good info and support.
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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My friend's doctor helped him get off benzos by switching him to an equivalent dose of Valium-- spread out throughout the day. Then he VERY SLOWLY took smaller doses several times a day. He got off in a couple of months without having withdrawal symptoms or spikes of anxiety.
Valium works because it comes in very small pill sizes, plus when he got down to the tiny dose he could cut them in pieces.
Good luck.
-------------------- Son, 26, Dx Lyme 4/10, Babs 8/10 Had serious arthritis, all gone. Currently on Valtrex Daughter, 26,bullseye 7/11 arthritis in knees, cured and off all meds. . Self:Lyme, bart, sxs gone, no longer treating. Posts: 496 | From Washington, DC | Registered: Jul 2010
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quote:Originally posted by desertwind: Look up Dr. Ashton and read the manual. This is the resource that is commonly used as a guideline.
Most recommended taper is 10% every two weeks and even then you may experience inter-dose tolerance w/d symptoms.
Many times, in the case of shorter half life Benzo.'s, the person slowly crosses over to Valium which has a half life of 90-200 hours and makes the w/d a bit more manageable for some people. A slow gradual taper is a must to help your brain re-adjust your GABA-A receptors.
You GABA-A receptors have been down regulated and need time to up regulate - sort of wake up.
Many Benzo w/d symptoms are very similar to lyme AND the stress of going through w/d can trigger or intensify Lyme and other TBI's.
Also be careful to avoid supplements that affect your GABA receptors as that can increase your w/d symptoms.
Check out benzobuddies.org for some good info and support.
This is great advice/info. I used the Ashton method that Desert references above in her post w/the cross over to Valium.
Posts: 151 | From North East | Registered: May 2011
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posted
The link for Dr. Ashton's manual is in my post above.
Triathlongal is right. Valium has a longer half-life which makes for fewer peaks and valleys and a smoother transition as you drop down to lower doses.
-------------------- Son, 26, Dx Lyme 4/10, Babs 8/10 Had serious arthritis, all gone. Currently on Valtrex Daughter, 26,bullseye 7/11 arthritis in knees, cured and off all meds. . Self:Lyme, bart, sxs gone, no longer treating. Posts: 496 | From Washington, DC | Registered: Jul 2010
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droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
Switch over down to valium, then titrate down sloooowly. I suspect some who think they have lyme actually have benzo withdraw.
That's my advice. It's also the Ashton method. Very calculated.
linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
Ashton/valium isn't for everyone. I had a terrible time with it; it caused major anxiety for me.
It seems like there is a certain percentage that can't handle it. However, it does work better for some.
Most doctors won't go anywhere near valium, so it's particularly difficult to find one to prescribe the Ashton method.
My doctor called the klonopin into a compounding pharmacy (in liquid form). I tapered using a syringe, reducing by about 10% every two weeks.
You can speed that up or slow it down according to how well you're tolerating the reduction.
One thing to consider is that the md who prescribed this to you in the first place may not understand the need to taper slowly.
If you confide in him/her that you want to taper off, he may cut you off way too fast which can cause seizures, protracted withdrawal and all kinds of pain and suffering.
If you cannot find a doctor who understands benzos (this is about as difficult as finding a good llmd), you can do this yourself:
I would not enter a drug treatment center for benzo addiction. It's not like other prescription and illicit drugs which can be detoxed in 30-60 days.
It can take months to taper benzos. You have to take it slowly and let your body/brain adjust, taking breaks periodically.
Drug treatment centers are not set up for this and can send you home in worse shape than you were in when you came in, both you and your bank account.
It is mind-blowing how many doctors, including our llmds, prescribe this poison. In my mind, it's criminal.
Take care and keep us posted on how you're doing.
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
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posted
I want to suggest joining Benzobuddies.org like others here have, and wean yourself off your benzo via a slow taper. Detox centers rarely allow you to go at your own pace if your withdrawal symptoms go crazy and you need to go really slowly.
It took me a year to do a slow taper and get off low dose xanax (0.5mg daily). I switched over to Valium and then did a micro taper using a jewelers scale. My LLMD supported my decision and encouraged me.
I was so relieved to get off a benzo as it was interacting with my Lyme treatment big time. Several times I ended up with hyperacusis because of the interaction between my benzo and other drugs necessary for my Lyme treatment.
It was a long journey, but totally worth it. I will never touch another benzo again.
Posts: 187 | From Connecticut | Registered: Jun 2013
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It is mind-blowing how many doctors, including our llmds, prescribe this poison. In my mind, it's criminal.
- True.. and very sad.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
Yeah, the md that prescribed this to me looked me in the eye and told me how 'safe' it was.
When I went in and told him I wanted to taper off, he got downright nasty.
I firmly believe he was prescribing this stuff knowing people would become dependent.
What better way to keep the revolving door going and the coffers full?
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
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phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
How long and what does of klonp.? I was on xanax for 2 years, everyday and had no trouble coming off, I was on 1/4 mg 4 times a day .. I just slowly tapered off and before I knew it I wasn't taking any. I am back on it now for my ear ringing, off balance and weird head feelings and it helps a lot. We all are different. I just lost my husband 3 months ago and I am devastated so the xanax are helping some. Good luck to you, and sorry you are having to go trough this.. I couldn't tolerate klonp.
Posts: 1058 | From VA | Registered: Oct 2010
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posted
Wow- such amazing information. I too want to get off Klonopin in the future and have researched it off and on over the years. Don't know why, I wonder if a skilled psychiatrist might be able to help. Detox facilities might not really understand and cater to each individual case. Just a thought.
Posts: 6 | From USA | Registered: Jan 2015
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