posted
Hi, I haven't posted in a long time, but could really use some help. I would love to get a fresh set of eyes so to speak in regards to my daughter and her continued poor health.
Brief History:
2009 Mono in 9th grade. Had been way over-doing things and got really sick, and never got well actually. Slept 18 hours a day, eventually was diagnosed with depression. I was encouraged to put her on anti-depressents, and did. Lexapro.
The Lexapro helped her depression. But then the insomnia started. I didn't connect it to the Lexapro at the time.
Winter of 2010 she was still sick, still on Lexapro, but was finally diagnosed with Lyme and Co. She began tx for TBD in Feb of 2010. The insomnia had been bad for almost 10 months and we had tried everything! She was referred to a LLMD who is a psychiatrist specializing in TBD. At the first appt we were promised that my daughter would get to sleep. She did.
So for 2 years has been taking Lexapro, Topamax, Lyrica and Seroquil. She sleeps.
She has had a difficult time tolerating ABX and has been in the ER twice in the past year with terrible GI pain. We took her off of ABX in December, and switched to herbals and are focuing on healing her gut and treating parasites. She can finally eat again, which is a miracle!
But now, she is so fatigued that she can't get out of bed, can't go to school and just seems really sick!
I am wondering if that now that her gut is healing if maybe she is finally actually absorbing all of these meds, and that she is totaly over medicated with Psych/Sleep meds.
Of course, I am kicking myself for ever allowing anyone to talk to me into putting her on these in the first place. Now, I want her off them. We see the LLND this week, and the psychiatrist next month. I am wondering if the crusing fatigue and insomnia are from the Lexapro, and if we've only made things worse by adding all of these psych meds.
What if the isomnia wasn't Lyme related and a side effect of Lexapro?
Help Please!
Posts: 333 | From Lyme Here Too | Registered: Mar 2010
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Topamax, Lyrica and Seroquel are all sedating meds...none of which are considered sleep meds.
The Topamax is a migraine med that can also be used as a mood stabilizer. The Lyrica is for nerve pain, but, like Neurontin, can also be used as a mood stabilizer. The Seroquel is an atypical anti-psychotic.
If their goal was to knock her out, they Rx'd the right combo.
Lexapro made me wired awake.
Your post really hits home because my main symptom for years was crushing exhaustion. The Dr's said it was "hypersedation" due to severe depression. They were wrong, it was my body fighting off infection.
-------------------- aperture Posts: 551 | From Louisville, KY | Registered: Nov 2011
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Dr. S is a Lyme-literate psychiatrist in PA. She has had firsthand experience with Lyme.
Click on "E-mail me" in the upper right-hand corner of her webpage page and ask her for input or if she can refer you to someone about this.
Posts: 9020 | From Illinois | Registered: May 2006
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posted
i've taken most of those meds and seroquel was the one that made me sleep. maybe eliminating the others and keeping the seroquel.
Also, what is she eating? i know it's lyme 101, but sugar? gluten? art. sweetners?
Posts: 109 | From PA | Registered: Feb 2012
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kgg
Frequent Contributor (1K+ posts)
Member # 5867
posted
There does come a time when all meds need to be re-evaluated.
My son had to take his Lexapro at about 3PM for it to not interfere with his sleep. But there are other times that he has insomnia that is more yeast or Lyme related, not his Lexapro.
He too deals with nausea. They have determined that his nausea is central nausea. Meaning it is from his brain not his stomach.
I hate to see you kick yourself about your daughter being on these meds. You and the doc did what needed to be done at the time. No one gets better with this disease without sleep. It is the first thing that needs to be addressed with treatment.
Best, Karen
Posts: 1844 | From Maine | Registered: Jun 2004
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linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
The neurologist put me on Topomax a while back for headaches.
I started getting short of breath and figured out it was the Topomax. The doctor had me taper off slowly; he said it was important not to go off too quickly.
I don't know about the other meds you have mentioned.
You are a good mom, just trying to do what is best for your daughter.
Take care and God bless.
-------------------- '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
First of all, as the others said, please don't beat yourself up. We're all making the best decisions we can with the information we have at the time.
I had to respond to your post because I have been on all 4 of the psych meds your daughter is on and I know what it's like when the side effects are as bad (or worse) than the original symptoms.
I am happy to report that I'm off all psych meds except for a small dose of Dilantin for anxiety. I do have to take an obscene amount of supplements/herbs that cost a small fortune, but I do feel like we are treating the causes of my issues instead of just band-aiding the symptoms.
Here are my thoughts:
1. Keep going with healing the gut and treating the parasites. Healing my gut has been incredibly helpful for my mood and physical well-being. I have to follow the paleo diet, just gluten-free didn't work for me.
2. Has your daughter been tested for the MTHFR mutation? If she has the mutation, it will make her very sensitive to both the meds and the side effects. I have the mutation and treating it has been instrumental in improving my mood/sleep and getting me off psych meds.
3. It sounds like fatigue is your biggest concern. I would look at Seroquel as the first psych med to decrease. It is notorious for knocking people out, myself included. I suggest you call your daughter's psychiatrist and ask about starting a taper if you can't get in to see him/her sooner.
4. After checking for MTHFR and decreasing Seroquel, I'd start looking at decreasing the other meds one at a time so you can get a better idea of what is doing what. I'm sure you know to never stop psych meds abruptly. Here's my experience with the other meds, if it's helpful:
- Lexapro really messed with my sleep. I didn't have out-right insomnia, but I woke frequently and had bad dreams. My sleep was so poor that I was exhausted during the day. I did have a short bout of moderate GI symptoms when the dose was too high (20mg in my case).
- Topamax didn't affect my sleep/energy, but it did significantly decrease my appetite. It's often used to treat binge eating/bulimia.
- Lyrica made me manic, so I wasn't on it for very long.
posted
Hi, when does she take her lexapro? I was told to take it in the morning to avoid influence on sleep. Also this horrible insomnia sounds like bartonella-related, which I had. Atb combination against bartonella helped. Bartonella is often related to GI issues as well.
Posts: 125 | From eu | Registered: Dec 2010
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
When I actually wanted some kind of meds like this for my daughter, noone would prescribe them for us. I'm really surprised at how much they gave her.
When she was at her worst for depression/anxiety, we did the supplements GABA and L-Theanine and it really helped significantly.
Since treating her with aggressive does of abx, she no long needs these supplements.
I was on SSRI's for years, and can tell you from firsthand experience that going off these types of meds is hard and it takes a long time to wean off of them.
You are a good mom just doing the best you can with a crappy situation. Hang in there!
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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posted
Thank you for your feedback everyone! I appreciate it.
Razzle, I love The Road Back website, it has lots of useful information. They also emailed me a suggested taper program which we will take into her psychiatrist next month.
Aperture, thanks for the feedback. Yes, they are all very strong meds. Even though she takes her Lexapro in the afternoon, and we've tried AM too, her insomnia didn't begin until after the Lexapro. I didn't see it at the time. Now I do. I am going to insist on a taper, and we'll see what happens. After she stabilizes on a med-free program, we'll re-evaluate and see if meds are actually needed after all. I think it's time to take her off slowly, and then look at it again.
Hoping, thanks for the link. It was good reading, and something I hadn't looked at before.
Lymenow, thanks for the diet reminders. She is gf, sf, df/cf and eats lots of organic and whole foods. A big change from 3 years ago, but I think that her diet is finally as close to perfect as it can be. At least, when she can eat...
KGG-Thanks for your support and reminder that I made the best decision that I could, and now it's time to re-evaluate. I am glad that you've been able to stabalize your son.
Linky and Coco, Thanks for your support and reminder that I am a good Mom. I am the primary descision maker for our family, and it's a heavy burden. I hate it when I get so scared about her progress and future. It does help to talk about it and get feedback from those with experience and a good frame of reference.
According to the ART, babesia, bart, lyme, erlichea and fungi/parasites are all active right now. Yes, she does have one copy of each of the MTHFR mutations. It makes treating all of this so difficult.
Today we see the LLND. She will muscle test everything and we are going to discuss treating the MTHFR. I am hopeful that she can also get an IV that will help her.
We got the MTHFR test results in September. Our LLND at the time said it was easy to treat, just take a few supps. Well, it isn't easy to treat, and the supplements were too strong. I've been doing lots of reading, and I think we will be putting her on the modified/simplified Yasko protocol at very low doses.
I think that tapering her meds, getting the MTHFR under control, and also continuing to heal her gut and treat parasites/fungi will eventually pay off. It may be a long journey, but hopefully the destination will be improved health.
I so appreciate everyone's thoughtful feedback. I would appreciate any other ideas, and will let you all know how the LLND appt went today.
Best to all.... Lyme Mom
Posts: 333 | From Lyme Here Too | Registered: Mar 2010
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Does your daughter have much pain? If she reduces the dose of antidepressant, she may notice that the pain level increases dramatically.
Read the reviews to get an idea of what's going on. You can look for Rhodiola at iHerb.com and see reviews for different brands there.
Also, look into Kefir for gut health. I make it from the starter powder and I can notice a difference.
Posts: 6956 | From Lancaster, PA | Registered: Feb 2004
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