Advice on reinstatement, multiple setbacks triggered by minor events

[[Mu...]]

 

Hello,

 

I am writing here to seek assistance for my wife who is too debilitated to post this herself.

 

Background: she took Lion's mane (apparently you can experience withdrawal from this) for three months Nov '22 - Jan '23 and also took 12 pills of Valium total over three weeks in early 2023.  Also took Lion's Mane for 2 more weeks in May 2023 and had 1.5 pills of Ambien and 40 mg of Gabapentin in spring of '23.  She had mild withdrawal from Feb 2023 - July 2023 and in July 2023 was able to function pretty normally but then had a large setback triggered by a car trip (4.5 hour drive each way over 2 days) end of July 2023.  She deteriorated over the course of August and from September onwards has been largely confined to bed.  The car trip triggered severe POTS / extreme movement intolerance.  She made some headway from Sept - Dec of last year and had gotten to the point where she could get up occasionally for brief intervals and had even gone up/down the stairs once or twice.  Sitting up in bed was not causing issues.  She has had 4 additional setbacks - all very minor triggers.  Early Sept of last year she tried to stand for 30 minutes or so and prepare some food (this setback confined her to bed), some emotional stress last Christmas and, more recently, one from taking a single pellet of monolaurin (she had been using this to treat some Lyme coinfections and previously took up to 60 pellets at once) and one after a hormonal shift around her period.  Particularly since Christmas, her baseline seems to be resetting lower with each setback and her resting pulse is now in the 90s lying down and if she even so much as sits up in bed it can shoot up to 130s.  Her body cannot seem to tolerate even minor movements such as sitting up (even talking too long seems to induce physical stress) without getting tachycardic and also causing severe nausea, leg convulsions and severe anxiety.  The hormonal changes around her period in particular seem to be making her worse and she feels the stress on her body might also be making her perimenopause (she is only 44). For further background, she had a COVID hospitalization in early 2020, made a good initial recovery and several months later nosedived again.  We had some testing done and discovered that had 6 active infections (roseola, Epstein Barr, mycoplasma pneumonia and three tick-borne infections - Lyme, babesia, Bartonella).  This stress on her immune system made her develop mast cell activation syndrome.  She was able to get the infections under control (primarily through monolaurin) and was in pretty good shape from mid-2021 until Dec 2022.  In Dec '22 we got COVID again and that triggered her mast cell activation syndrome which is why the valium was prescribed (to calm her mast cells).  She had been taking the Lion's mane for some gastrointestinal issues.

 

Sorry, I know that was a lot and rather complicated.  We are just looking for any thoughts / insights as to why she seems so susceptible to setbacks over even minor things (short car trip, one pellet Monolaurin, one argument, one menstrual cycle) and why the hormonal shifts around her menstrual cycle in particular seem to be making her worse

 

She isn't currently taking any medications or treatments, partly for fear of triggering another setback but also because her mast cell condition can often get triggered by drugs, supplements, etc (she can only eat 5 foods now that don't cause reactions because of her mast cells). We are wondering if anyone had any thoughts on reinstatement - how to do that, whether it can be effective and potential dangers.

 

Lastly, does anyone have recommendations for licensed doctors with expertise in treating/addressing withdrawal?  We have found some good coaches but no actual doctors who seem to fully grasp what is going on

 

[[je...]]

Hi @[Mu...]

Welcome to BenzoBuddies!

I’m so sorry for all the difficulties your wife is experiencing and thank you for supporting her. I’m not a medical doctor so I’m just guessing here, I cannot diagnose her. Her situation is very complex. 

Personally I think her situation might be a combination of all her medical issues. I’m not sure it is only withdrawal related. I have had Covid complexities as well as GI problems during withdrawal that were unrelated to withdrawal. It makes it very difficult to distinguish between symptoms. When was the last time she had a full medical checkup? My first suggestion would be to consult with a doctor.

 I hope other members will add their experiences and opinions as well. We’re glad you’re here and hope we can help you and your wife. 

[[Bu...]]

Hey @[Mu...],

I am so sorry for everything your wife is dealing with.  I know it's hard on you too, but I am glad she has you.  

I think @[je...] is right about a full medical check up.  It's always good to get a baseline and rule out other causes. 

Your wife has been through so much, I wonder if her body and brain might just need some time right now to settle.  I have found that hormones are one of the first things to get out of whack when anything else goes wrong and then, of course, they contribute to the problem that messed them up in the first place.  I found this to be true after my two bouts of Covid and now during my withdrawal from Clonazepam.  After ruling out other causes, time was the thing that ultimately helped in all those cases. 

Are you talking about trying Valium again?  This can be tricky.  Are you familiar with the theory of kindling?  It might apply here.  I'm sure others will weigh in with their thoughts on this too.  

 

 

 

[[Mu...]]

On 22/03/2024 at 14:53, [[j...] said:

Hi @[Mu...]

Welcome to BenzoBuddies!

I’m so sorry for all the difficulties your wife is experiencing and thank you for supporting her. I’m not a medical doctor so I’m just guessing here, I cannot diagnose her. Her situation is very complex. 

Personally I think her situation might be a combination of all her medical issues. I’m not sure it is only withdrawal related. I have had Covid complexities as well as GI problems during withdrawal that were unrelated to withdrawal. It makes it very difficult to distinguish between symptoms. When was the last time she had a full medical checkup? My first suggestion would be to consult with a doctor.

 I hope other members will add their experiences and opinions as well. We’re glad you’re here and hope we can help you and your wife. 

Thank you. We are consulting with some doctors.  I concur with you in the sentiment that a complete medical check is warranted.  I would love to get her to a place like Mayo Clinic and just have her observed by a team of specialists that can do tests, scans, monitor vitals, etc.. . but she cannot even sit up for 30 seconds with getting extremely tachycardic, nauseous for hours, legs shaking etc.  Her greatest fear is doing something that might cause another setback and lower her baseline permanently (or for a very long time) and she is convinced that physically moving herself somewhere will do just that.  I am afraid that we do not have a complete picture of what is going on because we do not have enough empirical data. 

[[Mu...]]

On 22/03/2024 at 19:26, [[B...] said:

Hey @[Mu...],

I am so sorry for everything your wife is dealing with.  I know it's hard on you too, but I am glad she has you.  

I think @[je...] is right about a full medical check up.  It's always good to get a baseline and rule out other causes. 

Your wife has been through so much, I wonder if her body and brain might just need some time right now to settle.  I have found that hormones are one of the first things to get out of whack when anything else goes wrong and then, of course, they contribute to the problem that messed them up in the first place.  I found this to be true after my two bouts of Covid and now during my withdrawal from Clonazepam.  After ruling out other causes, time was the thing that ultimately helped in all those cases. 

Are you talking about trying Valium again?  This can be tricky.  Are you familiar with the theory of kindling?  It might apply here.  I'm sure others will weigh in with their thoughts on this too.  

yes, I concur but per my response to Jelly Belly her movement intolerance is so severe she is not willing to physically go anywhere (worst fear is causing another setback).  I think she needs to be monitored by a whole team of specialists for a period of time to start getting some data.  We did find one doctor who is willing to do housecalls but he is more of a GP and doesn't really have expertise in withdrawal, Lyme, mast cell activation or POTS. . .

yes, she has mentioned taking Valium again as a last resort so was just looking for a medical doctor who might be able to help advise on that.  A medical doctor rather than a coach because of all her other complexities. I have heard her mention kindling but not read up on that myself yet

[[je...]]

3 hours ago, [[M...] said:

Thank you. We are consulting with some doctors.  I concur with you in the sentiment that a complete medical check is warranted.  I would love to get her to a place like Mayo Clinic and just have her observed by a team of specialists that can do tests, scans, monitor vitals, etc.. . but she cannot even sit up for 30 seconds with getting extremely tachycardic, nauseous for hours, legs shaking etc.  Her greatest fear is doing something that might cause another setback and lower her baseline permanently (or for a very long time) and she is convinced that physically moving herself somewhere will do just that.  I am afraid that we do not have a complete picture of what is going on because we do not have enough empirical data. 

I can see you’re in a very difficult situation @[Mu...]. Your wife was only on 12 pills of Valium and 1.5 Ambien which is extremely short use and then seem to have mostly recovered from it. Although it is possible for some people to develop dependency pretty quickly, it is very difficult to tell in her circumstances whether these symptoms are related to withdrawal from benzodiazepines or something else. 

We just don’t know what exactly is causing this. If it were me, I would not reinstate the Valium. She seems too fragile and sensitive to medication. Unfortunately doctors know very little about withdrawal or tapering of benzos. I’m not aware of any doctor that has enough experience or knowledge to assist you with this. 

[[ns...]]

Masashi, hi.

I'm so sorry your wife is in such a bad way.

Just wondering why, if she is unable to get out of bed, walk or have any quality of life right now, why isn't her doctor doing test in a hospital setting?

If she's unable to go and get tests, if it were me I think I would have to ask my doctor to admit me and get some tests done.

She needs to be stabilized to treat the lyme disease. She wasn't on valium very long, so it wouldn't seem she'd be in withdrawal, but it's possible. 

I know our son has lyme with all of the strains you listed above and he has undergone a bucket full of antibiotic treatment including iv antibiotic and other alternative treatments as well.

Lyme disease, at least to my knowledge, and fir my son is very similar to benzo withdrawal and has caused our son many symptoms and mimicking many diseases. He has muscle spasms, stinging, tingling in his extremities and head, and been tested for everything under the sun and has ow been diagnosed with other illnesses.

He does take clonazepam for the extreme anxiety and its helped, not completely but he has temporary relief. 

It's my opinion, and just that, my opinion, that your wife is in need of elaborate testing via  admittance to a hospital setting where she can get proper tests and treatment. 

Being confined in her bed is not helpful.

She seems to be suffering very much and no one wants that.

I hope you find answers, I hope she is soon able to get out of bed and regain some normalcy for her life.

You are to be commended for taking care of her and she is blessed to have you.

I know my husband has insisted I go to er on many occasions and I'm glad I did.

Please take good care of yourself and your wife, as I'm sure you will.

Ns