posted
My daughter is three months into treatment and says she feels worse than before she started.
She has awful insonia, and then sleeps til 5 PM many days. She has been experiencing panic attacks, headaches, is super pale with dark, dark circles under her eys.
She has no energy and says that all the motivation to do things has been sucked out of life for her. She is irritable. She still has horrendous menstrual pain. Her vision is terrible. She feels like she is in a fog much of the time.
I have been telling her that these symptoms, many of which are the same as those she's had for years, are possibly herxing. She is losing heart and I dont want her to start skipping doses of meds...which she had been doing a few weeks ago.
When does a person in treatment start to feel better? Is there any way, other than retrospectively, to tell if these are herxes?
I have such faith in her LLMD...he came so highly recommended and seems to really know his stuff...but at the last visit, even he commented on her depression as if it were something unusual for LD...and that gave me pause.
Her PMD wrote her off as depressed...I can't imagine having that from her LLMD. Sure she's depressed, but who wouldnt be with her quality of life...but more on the topic...isn't depression a Lyme's symptom anyway>
Any feedback on this would be appreciated...very much!
Posts: 217 | From New Jersey | Registered: Apr 2007
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
hi Elle-
is your daughter taking an anti-depressant?
whether she is herxing or not, it sounds like she needs help with depression, and yes, depression is very common with Lyme.
dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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posted
I had to go on an antidepressant for a while during treatment. Off it now, but wondering if I should have stayed on.
Posts: 561 | From eastcoast | Registered: Aug 2006
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posted
I've been treating Lyme for about 9 weeks now and just went through the worst herx ever (landed me in the hospital for almost a week). The physical was unbearable but the emotional part almost did me in. I was so severly depressed during this herx that I scared myself and my family. I'm in a little bit of an up-swing right now (change of medications)and back to being 'mentally stable'. I believe the depression can be attributed to both a herx but also dealing with a chronic illness. I think an anti-depres. and talking with someone is certainly appropriate....just until she gets better.
Posts: 561 | From mass | Registered: Jul 2007
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Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
I too had such severe depression and anxiety when starting treatment it was unbearable, I had never experienced either before until I started AB's - but it does go with treatment.
I did not go on anti depressants as I did not want to start yet another med that could also give severe side effects and in some cases cause worse depression, but I did use anti anxiety meds when I needed them, also Diamox was an absolute life saver for me - I beleive where it releives the pressure in the brain from the die off swelling and gets rid of the brain fluid (that is full of die off toxins) it helps so much with the mental symptoms.
I still get a monthly herx that gives mental symptoms and by using Diamox/detox and continuing AB's the mental symptoms are occassional now - so hang in there as it honestly will get better.
posted
I went thru the same thing...it does get better. I donot take anti-depressants, but I do take anti-anxiety meds when I need to. Maybe it is a herx, or maybe she needs a different course of tx / different meds. In any case, it will get better. Just hang in there!!
posted
I have been in treatment for 8 months and it is still kicking my butt. I am having to pulse low doses of ABX still or I end up on the floor wanting to die. Have you tried backing off the ABX some or completely stopping them for a few days to see if she feels better?
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posted
Ditto to what Byron said....The best way to tell is to stop the meds for a few days. If she feels better, then she's been in a long herx.
Anti-depressants would be a good idea most likely. Who wouldn't be depressed by having Lyme disease?? The disease itself causes depression.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Ditto to most of what was said above!
Yes, that is me -- herxing and feeling like your daughter is feeling. I had a full fledged panic attack in a pizza shop in rural massachusetts yesterday while on a 3-day vacation; for absolutely no reason.
It must be because I have just in the past few days raised my levels of minocycline. After all I have learned in the past year, I totally believe it is a herx.
But, we do need to control the symptoms while getting better. Speak with your llmd, and see if she/he wants to cut down on meds for a few days to make it easier. Or, have her see a therapist; treating the symptoms of anxiety and depression are better than not treating, no matter whether it is caused by a herx/die-off reaction, side effect of the meds, or the lyme itself!
hope she feels better. Tell her to read some of the lymenet posts, they can help push one through these feelings.
Posts: 2557 | From home | Registered: Aug 2006
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posted
I am 3 months into treatment, and I have never fealt so sick in my life. Everyday is horrid for me. Lots of pain for me. I too have tons of eye problems that severly limit what I do. And also have bad m.pain. Lyme can really suck the fun out of life.
Also recently (as of 3 days ago) I woke up and was extremely depressed for no reason, and since then my brain fog and confusion came back. As everyone above mentioned, this disease can mess with your chemistery, including your brain chemistry. Its always good to keep that in mind so you can be prepared if it happends. Also, as I am sure you know, being sick all the time does not make for a happy person. And I feel being unhappy can slow your recovery. Optimism is some of the best medicine.
I really hope your daughter starts seeing some improvement soon. I know how hard it can be doing all this and seeing no improvement. I am having a hard time with that. Hang in there. Do tell us if she starts seeing improvement! or if anything else changes. My heart goes out to you and your daughter.
posted
Wow! Just got back here and saw all of your responses. Thanks everyone for the support...
In answer to the question re: antidepressents...Yes, she is on Wellbutrin and also Xanax for the anxiety...but backed off the Wellbutrin because it wasn';t controlling the anxiety...She has been on a few SSRI's as well (Prozac, Zoloft and also Effexor) but has had one issue or another with each. So, finding the right antidepressant is key hjere.
She sawe her LLMD today who CHANGED her meds...started Flagyl and stopped ther zithro/Bactrim/ and artimisinin...SO...maybe tyhe new protocal will make a change.
I am helping her find a therapist as well...In our area, it is hard to find anyone Lyme Literate...her previous experiences with therapy haven't been so good...
before she was diagnosed with L.D....her insomnia/exhaustion and difficulty getting through the school day were treated more unwanted behavior than as a symptom and she experienced this as dyspathic to the extreme.
SO...we keep looking.
Posts: 217 | From New Jersey | Registered: Apr 2007
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I just read this post today. I really feel your pain. It is so hard to see a child suffer with any illness. Also, was wondering how things are going with your son and all of his Dr. appt.'s.
How is your daughter since her meds changed? Is she just taking Flagyl? or does she take other meds with this? Flagyl can be really tough on the body. It does work well, but the herx's are the worst in the early stages of taking it.
My daughter had some of your daughter's same symptoms. She also had vision problems, had to get glasses (now wears contacts). It took a good 8 months of treatment before she started to feel "normal again". She is still on abx (21 months), but is doing much, much better.
Try to keep your daughter in the social mix. Does she have friends over to visit? Does she have at least one good friend to share her feelings with? It is important to have that support, especially when you are feeling isolated from an illness.
Posts: 263 | From Georgia | Registered: Feb 2006
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posted
My experience has been Xanax is garbage, and SSRI's are even worse.
I had to start taking seroquel in combination with high dose klonipin and or Xanax to get relief.
With Xanax, I needed at least 3 milligarams a dose, or more. This is a huge dose. Agoraphobics only take 2-2.5 mg's at a time. Plus it wears off in 3-4 hours.
Now, 100mg seroquel plus 2mg klonopin helps it.
Posts: 269 | From Valencia, CA | Registered: Aug 2007
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