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» LymeNet Flash » Questions and Discussion » Medical Questions » Scared, what's next? At rock bottom ( long post fyi)

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Author Topic: Scared, what's next? At rock bottom ( long post fyi)
Mountainsky
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Member # 51857

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So the **** hit the fan Tuesday night. My body aches got worse 2 nights ago, it killed to lift my arms to wash my hair yesterday. My throat killed and burned, had a 3 day migraine, I spiked a low grade temp and soaked my sheets ( with ac on) my skin all week has burned ( before I had the temp)

I was having the bad body aches all week. The last month or so I've had a fast heart rate, most days it's 100 and above. Luckily my BP is back to normal.

If you've seen my last few posts you'd see I now questioning of this is Protracted Withdrawal Syndrome. I don't believe so but at this point I'm desperate to get to the bottom.

In good faith I had a Covid test yesterday and stayed home from work( it was negative), another coworker of mine had questionable symptoms so I wasn't chancing anything.

Alerted my Supervisor and the Employee Health office by phone, told the nurse my symptoms, told her I didn't want to assume it was a Lyme flare-up or even allergies since that's running rampant as well. As the day went on my symptoms got even worse.

My anxiety has been through through the absolute roof still.

If it's not Covid could this be the start of Serotonin Syndrome? I'm really getting scared.

I had to get off the Zoloft back in April to go on the Methylene Blue...anxiety was even worse so got off, waited 10 days then reinstated the Zoloft and upped the dosage quick. I added in Taurine less than a week ago and L-Thieiane.

This makes me think it could very well be Serotonin Syndrome. Reading the symptoms, my mouth dropped. I'm just at a loss and utterly hopeless.

I had a follow up with PCP recently and she said chronic Lyme is controversial, I prob have chronic fatigue syndrome or fibromalacia. I don't know how the **** I maintained my composer in that exam room.

I will be discontinuing care with her. She wanted to put me on Amitripyoline for my migraines, pain and fatigue. Wtf, that stuff causes Seretonin Syndrone too. She said my depression and anxiety is from feeling sick ( well yea) but not the Lyme. That woman is gonna kill me.

I had a few other people on another Lyme disease forum tell me testing negative for Covid means nothing and I could still have it, absolutely that's true.

Then another person told me it sounds like I have Phechromatoma ( spelling) I looked that up and yea...scary.

Guys....WHAT IS THIS??? WHY is this happenin to me? I'm gonna have a nervous breakdown over this. Could it be a Lyme flare up? So many questions.

It feels like the flu. I feel as though contacting my LLMD is hopeless. She's out of office until Monday anyway.

I had a similar feeling 4 or 5 months ago when I was on the Rifabutin if you guys remember. It skyrocketed my liver functions, wiped out my WBCs big time and gave me pronounced hair loss. But with that I had no temp or sore throat and ( well obviously) I'm not taking the Rifabutin.

Posts: 353 | From Massachusetts | Registered: Mar 2019  |  IP: Logged | Report this post to a Moderator
Mountainsky
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*UPDATE*

The nurse from Employee Health called to check on me. I discussed my concerns ( could it be a false negative on covid, Lyme flare_up or Seretonin Syndrome.

I told her I still have zero relief. Regarding the possible Seretonin Syndrome she told me to reach out to my Psych NP so I did..the secretary says she is out till Tuesday, terrific!

The secretary said too at this point esp with the racing heart go to ER or Urgent Care. Def was not going to ER so Urgent Care it was but I was still reluctant.

The provider there took a full history and said he was certain it wasnt Seretonin Syndrome and put me on a low dose of another anxiety med only as needed. On the fence about that. He says I'd be alot sicker if I had Seretonin toxicity...

They re-did my Covid test, did an EKG ( which was normal), bloodwork and a throat culture. I have to miss work tomorrow too but have an absence note from the provider since tomorrow will be day 3 of being out.

Now play the waiting game again.
Really torn on this.

I JUST WANT MY ****ING LIFE BACK!!!!!!!

Posts: 353 | From Massachusetts | Registered: Mar 2019  |  IP: Logged | Report this post to a Moderator
Bartenderbonnie
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Mountainsky
(Love your name)

If I could tell myself one thing when I started treatment, it would be to relax, as it might take 1 - 3 years on your journey to wellness. You will feel worse before you feel better.

Did the Urgent Care doc prescribe you Xanax?

During my most horrible months of this awful disease, Xanax SAVED my life. I was so exhausted but so scared to lay on my bed for fear I would FALL through to the depths of hell. I was scared of the shower. I couldn’t leave my house, not even to the mailbox.

The fact you are able to work is a testament of your strength and courage and level of disability..

Anxiety is absolutely horrible and I feel your despair in your words. I understand your doubting of your diagnosis(s). As long as you have a knowledgeable LLMD, you must trust her treatment.

I put ❤️ stickers on my good days on my monthly calender.
There were months when I had no stickers, then 2 stickers, then 3 stickers., then 5 stickers in a row. So gratifying to see actual progress.

I know you can get through this if you can figure out how to reduce your anxiety.

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Mountainsky
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No the urgent care doc prescribed me something that is actually a antihistamine, still not taking it. Begins with an "H".

No word still on my second covid test, throat culture and blood work. My EKG was normal. If everything else is normal I have no choice then to go to ER and demand a seratonin level....a high enough level is fatal.

I'm still really sick with no relief. The urgent care doctor doubts it's Covid and Seretonin toxicity.....ok then what the **** else is it? It feels like the flu. It's not cold and flu season yet.

Having lyme I'm used to feeling miserable. But this is way different.

Posts: 353 | From Massachusetts | Registered: Mar 2019  |  IP: Logged | Report this post to a Moderator
Mountainsky
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Hi Bonnie,

Too add im not new to treatment, I've been in treatment 2.5 years now with no luck and only getting sicker, zero relief. My LLMD is even questioning if I have it.

I tested positive for a few things including Coinfections. The meds could have taken care if it but there could be something else lurking making me sicker.

She wants to redo my igenex tests next month.

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hiker53
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Mountainsky--Usually serotonin syndrome occurs very soon after you have started the drug or have increased the dosage.

Are you still taking the zoloft? Withdrawing gradually?

Certainly wouldn't hurt to get your LLMD to rerun a tick borne infection panel at Igenex to look not only for lyme but for bartonella, babesia, myocplasma etc. if you and your LLMD doubt the diagnosis.

Hang in there.

Focus on something positive. Go to a safe place in your mind (I always pray or get out my pictures of waterfalls that I have hiked to or listen to Christian music)

Blessings!

--------------------
Hiker53

"God is light. In Him there is no
darkness." 1John 1:5

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Mountainsky
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I can't, just emotionally numb. Nothing works anymore

Have alot of hate and bitterness for the individuals who did this to me

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Lymetoo
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Mountain ... It may be Hydroxyzine. It's helpful for those with MCAS, so give it a whirl. You were wondering about that anyway.

Bonnie .. I love the idea of the hearts on the calendar! I wish I had used that idea during my four years of H___!

--------------------
--Lymetutu--
Opinions, not medical advice!

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Mountainsky
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I'm wondering if this is my EBV reactivating? In the past when my LLMD would do my titers they were through the roof, IgM and the IgG, viral capsid, etc.

I get very confused over these tests and I know there is even controversy in that. 90% of population has EBV it'll show up in their blood (the antibodies)

But what truly distinguishes a CURRENT or PAST infection? Someone told me a current infection is IgM.

In winter of 2015 I had it for 2 months, then in the summer of 2018 again 2 months of being ill from that hell. Those times were well before I went into treatment and saw my LLMD.

I am now wondering if it's truly that again? Dampened immune system, mental and physical stress....that's me. Perfect circumstances to reactivate the Mono/EBV? Hmmmm.

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terv
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Not saying that you don't have diagnosis from above but I saw a video which was a patient testimonial from Dr. J (in wash DC). Patient was his daughter.

I didnt watch the whole thing but I did hear that she put herself in an inpatient program because of psych issues. She details her whole journey with huge amount of meds and doctors that she used to try and solve her isssues. She ended up in Lyme treament being treated by a PA in his office.

https://www.youtube.com/watch?v=mu7bx10vzK0


Since we can't mention LLMD's names, if you watch the above video you will hear it. On youtube he has a huge amount of videos on a lot of different topics. You might find some applicable to you. In particular he has one on mental health

https://www.youtube.com/watch?v=YgCm7jroiOY

and neuropsychiatric Manifestations. This one also has Dr. B whose specialty seems to be psych disorders.

https://www.youtube.com/watch?v=70e0CtDQoYk&t=817s


Geez he has so many videos. Navigating health care system, relationships, roadblocks. I need to watch a lot of these.

Ignore this post if it isnt applicable.

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Mountainsky
LymeNet Contributor
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I've never had so physical or mental anguish in my life. This has truly been a summer of utter hell. Absolutely mind-boggling.

Thank you for the links, I'll watch the videos later.

💚

Posts: 353 | From Massachusetts | Registered: Mar 2019  |  IP: Logged | Report this post to a Moderator
   

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