posted
So I had my second visit with my lyme doctor today. She took me off of mepron and just said to take ABABS for babesia and doxy for lyme. She thinks a lot of my issues, sweating, shaking, anxiety is mostly cause by Ativan withdrawal issues.
Does anyone know if this could be true because she would like me to take low dose lamictal, a mood stabilizer, while trying to wean off the Ativan completely.
I don't think ABABS will do anything for babs unless it is with something else. Am I wrong for thinking this?
Thanks for any help. Greatly appreciate.
I am very afraid of trying lamictal by the way.
Posts: 468 | From boston, ma | Registered: Feb 2018
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
It could be the Ativan. I know another patient of your LLMD who had terrible time coming off of Benzos.
A-Babs can and will work. I may not cure it but should help. MC-Bab-1 or MC-Bab-2 are also good.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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posted
Thank you for your replies. I actually know the other person who saw my llmd and have been in touch with them. I was on 3mg. of Ativan daily.and cut it back and now only taking 1.5 daily, meaning I cut it in half over months. I have been on thise same dose since last September.
I wake up everyday sweating profusely, shaking, etc. and I thought this was babesia symptoms until I saw this doctor yesterday. She mentioned that maybe its Ativan issues since I take my nightly dose around 9pm and wake up around 5am like this every single day.
I sweat and shake all day long and then I will get the chills and be cold. This has been going on for a year and that is why I decided to get tested in December.
I am confused as to how can it be withdrawal if I have been on the same dose for months? I know Ativan only has a very short life-meaning it last about 3/4 hours and wears off.
I am very short of breath all day too. I am very confused after seeing my doctor yesterday. Am I having Ativan issues or babesia symptoms?
Posts: 468 | From boston, ma | Registered: Feb 2018
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posted
Is this Dr. a LLMD? I'm also trying to wean off klonopin. NASTY meds. So hard to come off.
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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posted
yes she is. all the benzo's are nasty meds and I wish I never started them honestly but she is not the one who originally put me on them. I am afraid to take lamictal because of the side affects. How long have you been on klonopin?
Posts: 468 | From boston, ma | Registered: Feb 2018
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posted
I was on 1 mg for about a year and then started tapering. I'm now at .5 mg. It took me about a year to cut the dose in half... It is CRAZY!!! Adding lyme to the mix is just unbearable.
I'm sorry you are suffering. Usually my taper-withdrawals last about 2 months. Not sure if you are suffering from babesia or withdrawal. So sorry!
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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posted
yes weaning can be very hard, but I am surprised it took a year to cut it in half because I was told to cut 1/4 every two weeks then another quarter and so on and so on. I don't know why it took that long but maybe you were having a lot of issues. benzo's are very addicting.
I am wondering what to go on while doing it because I do not want an antidepressant or a mood stabilizer. I have tried several antidepressants and they increased my anxiety and gave me insomnia so I am petrified of them now. I can only image that a mood stabilizer is worse., so what do I do.
I have anxiety all day, no matter how much Ativan I was on, it never really helped and that is how I ended up on 3 mg. a day a year ago. I have cut that down to 1.5 per day but want to get off of it completely.
any help would be sincerely appreciated.
(breaking up the post for easier reading for many here)
[ 04-13-2018, 07:15 PM: Message edited by: Robin123 ]
Posts: 468 | From boston, ma | Registered: Feb 2018
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hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
I take clonazepam for myoclonus. Have come down from 4 mg to 1 mg per day.
Every time I try to decrease that dose I get the myoclonus. Really would like to get off it, but if it keeps the myoclonus away, I will stay on it.
Lindadanis--doesn't sound like your symptoms are from Ativan withdrawal, since you have been at that same dose for months.
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8880 | From Illinois | Registered: Aug 2004
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posted
I didn't think so either. I think my symptoms are from babesia, constant sweating/shaking, chills, headache, anxiety. They all fall under babesia. Am I correct thinking this? my llmd said when I wake up and have this all day, it must be the Ativan tolerance but I doubt it, really. That is why I would not agree to go on lamictal or anything else. I have been on this dose for at least the past five months.
Lymetoo: what do you personally think it is if you don't mind me asking? Why do I feel like this all the time?
Posts: 468 | From boston, ma | Registered: Feb 2018
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posted
Lymetoo: what do you mean by saying that about my adrenals? They were checked almost a year ago by my endo and he said they were fine. My llmd never mentions that to me?? My biggest issue is I cannot breath, when I get up I am unable to catch my breath, this happens throughout the day. Its like I am so short of breath, it is very scary. Is this air hunger all day long?
Posts: 468 | From boston, ma | Registered: Feb 2018
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Links to articles & supplements -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
My two cents... it is the Ativan withdrawal.
I've worked with several Lyme/Babs patients who've been in this situation- some for years. I cry for them and with them watching them go thru this situation.
All of them thought it was Babesia too. Then they finally figured it out.
For this reason I have been adding to the www.MarylandLyme.org website with information to help TBD patients.
posted
thank you everyone but I am a bit confused. if I have been on the same dose for about four months, how can it be withdrawal? do you mean I started with 3mg per day and now I am down to 1.5 and my body is reacting to not having enough.
Also not to do with this post, but my grave disease acted up a year ago after 30 years and I have developed severe dry eye syndrome and the retina is dried out.
I see a specialist who said just to put moisturizing drops in and they are killing me everyday. They burn, are so dried, the light bothers them so much I cannot drive sometimes. Any suggestions would be greatly appreciated.
(breaking up the post for easier reading for many here)
[ 04-13-2018, 07:14 PM: Message edited by: Robin123 ]
Posts: 468 | From boston, ma | Registered: Feb 2018
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
linda, I really recommend a site called Stop the Thyroid Madness. Guess what I found last year buried under Lyme & co.
Horrible treatment for hypothyroid & Hashimotos. This group also has great info on adrenals, cortisol, meds for thyroid.
Example: blood testing on adrenals is as bad as Lyme testing. Really recommend you read from STTM about 4 tier spit testing for adrenals.
Warning, the Thyroid world is as crazy as this Lyme world. Very poor doctoring being done.
Pam
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
thank you again for posting to me. I am at wits end with all this. My anxiety is through the roof even though I am still taking the same Ativan. I feel like I am going crazy, weird thoughts, sweating, cannot settle down. It is horrible this morning. I am taking 100 mg. doxy and ABABS since Thursday and I already feel worse. I cannot figure out is this herxing with the babesia/lyme or am I just going nuts? I am scared and don't know where to turn. If I call my llmd, she is going to tell me to go on the lamictal.
Posts: 468 | From boston, ma | Registered: Feb 2018
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You say: "My anxiety is through the roof even though I am still taking the same Ativan. . . ." (end quote)
Ativan can CAUSE anxiety or for it to become worse. So can many other drugs that are supposed to calm it, rather, in some folks and especially in those with other complex illness factors, these drugs can make it so much worse.
But coming down slowly requires a well rounded plan.
You ask: "am I just going nuts? " (end quote)
No. I'm sorry that as far into all this as you are that question pops up. This is a complex medical matter.
I know you are scared and don't know where to turn. First, if you have not yet, find a proper plan for going off ativan - as you've mentioned in your intent and it has been set into motion. It does not sound like there's a proper plan in place, though, or that you've been counseled on what to expect and how to support your body to manage the withdrawal process.
This is not a criticism. It's simply an observation and my concern that you are on your own for what can be a very rough thing. A proper, mult-faceted approach is required.
This can get better. Really. The babesia and other TBD of course are involved but it's a tricky dance as just how much to work on those when your body is not really in good shape to handle the treatment.
Liver & Adrenal supports and a proper plan for ativan tapering off are where to start. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- As to a "proper" plan - Tincup posted this links set for you, be sure to explore it:
Stopping Psych Medications In A Safer And More Controlled Environment -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You say: ". . . taking 100 mg. doxy and ABABS since Thursday and I already feel worse. . . . " (end quote)
I don't know what's in ABABS. It may have liver support included. Just be sure that you know exactly what your current liver support entails. Dandelion might work well for you right now. Liver support also key for ativan recovery.
And, be sure you have the right kind and right dose (3 x day) of magnesium.
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
- The most basic support for adrenals (to help calm anxiety), to help with breathing and also to help in other ways, suggested in Burrascano's support methods as well. Most LLMDs suggest this and it should also work well with ativan recovery process.
at iHerb.com -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- When anyone asks if they are nuts?" that really bothers me. And I've been there, too. I am so sorry that you have a ways to go to get to through this. Amy Tan, a well known author has also described these kinds of symptoms in her writings on the topic.
While you are aware that lyme, babesia, reactions to various mood Rx, etc. can cause the kind of anxiety with which you deal, it might be validated to hear this. I just stumbled upon it and there is something so valuable to hearing how he describes how off kilter lyme can make on feel.
Hearing this just seems to sink in better than reading it, I think.
posted
thank you so much Keebler for all you sent me, however, I am having a horrible time reading it and understanding it. My brain fog is terrible. My llmd said nothing this week about adrenals, all the support you mentioned, nothing. She said to go on lamictal, talk to my therapist about putting me on it and to see a neurologist for this dizziness, numbness, headaches, etc.
She seemed very complexed with me as to what to do for me however, she did not mention any support or detoxing other than lemon water and Epson salt baths.
I am trying to wean off but it is very difficult. My therapist did not give me the Ativan, it was my endo doctor that gave it to me in the first place so I am wondering if I should reach out to him for help since he is the one prescribing it.
I feel like I am always speeding, never can settle down Keebler. The Ativan never worked, that is why it was up to 3 pills per day, 1 mg. each and I was the one who started decreasing it on my own. I have not decreased it in over five months, been on the exact same dose 1.5 mg.
I don't know what to do. I am seeing a neurologist tomorrow but not sure what to even tell him other than my llmd suggested I see him. If he is not lyme literate, I will be in trouble.
I came out positive for babesia duncani on the igenex test of 40, right above the normal level and band 34 on the imugen lab, which I believe is a local lab. All I am on is doxy and ABABS which is a herbal medication, not sure what is in it.
I feel like she blew me off yet I had her treat my daughter 14 years ago when she had lyme and she did well after 5 years on abx.
Don't know who or what to do Keebler.
Posts: 468 | From boston, ma | Registered: Feb 2018
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
lindadanis
The abnormal feelings you are experiencing are quite common during treatment, very scary and debilitating. Just AWLFUL.
Keebler's link to Daryl Hall's sufferring explains the horrific nature of this disease.
Daryl had borrelia, babesia, Bartonella, and ehrlichiosis.
But there is hope. He is well today, touring and sharing his gift and love of music for all to enjoy. I love me some Daryl Hall.
posted
You mentioned you never take more Ativan. Same dose for months which you decreased on your own. I took a different benzo years ago but when I tried lowering the dose I also went into horrible withdrawal. If I increased a little for a day I felt much better. It was just a short break but at least I knew it was the benzo and not the babs.
It took two years to get completely off. I was on it for many years and built up a tolerance. One supplement that helped get off the benzo was Gabamax powder. Only use sparingly though to see how you do and not get to tolerance with that. I tried never to take more than once per week.
I am now also treating heavy metals which I think helped some symptoms. I hope you get some relief soon!
Posts: 472 | From New Jersey | Registered: Dec 2007
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posted
Thanks again everyone for posting, I sincerely appreciate all your comments and suggestions. The other thing I wanted to mention and forgot is this: The minute I step out of my bed in the morning, I am out of breath and start sweating from head to toe. This happens every single morning. I sit here with a cold washcloth and keep wiping my face and neck and arms just to cool me down. Is this normal? This has been going on since last year way before I knew I had lyme or was on lyme meds? Is this babesia symptoms? I have had pulmonary testing last year and he said they were all normal. He did not know why I was out of breath all the time. I believe this symptom alone is what makes me take the first Ativan of the day.
It is gross/disgusting. I feel like I need to take a shower right away yet I do not sweat like this at night. I use too but not as much or sometimes never at night.
Posts: 468 | From boston, ma | Registered: Feb 2018
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