Please Help!

This is my second go-round with rock-bottom effects of this disease, though I've probably been sick for more than 25 years altogether. This board was a lifesaver five or so years ago, when I was dealing with my first "crash" due to these illnesses. I think I'm really just looking for some connection with people who understand, and maybe some advise re where to go with treatment.

My most intense symptoms, like the last time, are psychological/emotional. I've been waking up with a feeling of doom, which usually lifts gradually during the course of the day. For the past month or so there have been suicidal thoughts, though I'd never do that to my kids and the rest of my family. I'm just so TIRED of feeling this way, and exhausted in general.

I'm working a job and a half, and still not making enough money to get by. I have a son who is supposed to start college next year, and no idea how to pay for it. No significant other, no real support network. I have my kids (15 and 18) half time, and am responsible for half of their financial care.

After my first crash more than 5 years ago, I got back on an even keel after about 2 years of antibiotics and herbs. Then I got bitten again twice--once two years ago, and the most recent time last March. After the March bite I tested CDC positive via the standard test for Lyme. Have also tested positive for Babesia in the past, and micoplasma. High EBV virus levels, etc., etc.

After I started to slide downhill again in about August of last year, my naturopath started me immediately on a regimen of Houttonyia, Teasel, Sweet Annie, and CSA. I've been on a Cat's Claw and Japanese Knotweed mix for the past five years straight. Also taking all of the expected vitamins and minerals, as well as high-quality probiotics. Mostly gluten and dairy free, though I do cheat some.

about 3 months ago, I wasn't progressing fast enough and felt I needed to be proactive in order to keep my job and keep up with the rest of my life. Went back to the LLMD who works in conjunction with the naturopath. He put me on Minocycline, Clindamycin, and Tinidazole pulsed 2 days/week. The first time I took the Tinidazole I thought I'd literally die--SOOOOOO bad anxiety and suicidal thoughts. I took a break and went back on it, but on advice of my naturopath I'm halving the Clindamycin dose on the days I take the Tindi, and for a day after (she says it takes 24 hours to clear the system).

Today is Monday. I took the Tindi on Sat. and Sun. Sat. was BAD. Sunday was pretty darned good--very little anxiety and no suicidal thoughts. Today I took the half dose of Clinda., and no Tindi., and I feel AWFUL!!! Suicidal thoughts, paranoia, anxiety--you name it! Also foggy brain, and a bit of a stiff neck.

My naturopath advised staying on the antibiotics, now that I've started them, until I no longer experience suicidal thinking. But I don't know if I can take much more of this! To top it off, I had a final interview for a job that would have paid nearly $20,000 more than I'm making now, and would have significantly eased the financial stress. Found out last Thursday that I didn't get it. Having a VERY, VERY hard time shaking the feelings of worthlessness that this brought up.

Please help! I mostly need sympathy from those who understand, and reassurance that I AM a strong person and not a complete loser. Also, I need advice re treatment. I'm thinking of doing one more weekend of the Tindi., then stopping it. I would take the other abx. until I run out in about 3 weeks, then go back to exclusively herbs, whether or not I'm still experiencing suicidal thoughts. What do you all think, fellow Lyme sufferers?

Also, my one good friend who is my major support and about the only person I trust in this state of mind, has advised me to stop looking for a new job and focus on getting well. This last rejection surely threw me into a tailspin. At the same time, easing the financial stress would be helpful. But then again, I don't know how well I'd handle the stress of a new position in this state of mind, either. What say you--better to toe the line now until I feel better, or keep struggling to find a new position despite the extra stressors it causes?

Post Edited (notquitesoscared13) : 4/23/2018 7:12:22 AM (GMT-6)

I’m sorry that you’re relapsing and having such a tough time with your treatment.

I also think putting a new job on hold might be the best thing - but it’s a difficult decision since financial struggles also add to the stress.

You are so fortunate to have a supportive friend.

I can sympathize with you about the doom and gloom - I often get it in the morning, too. I wake up with it. And even though it lifts within a few minutes it’s still torture to me.

Hang in there -

I realize I wrote a bit of a novel. But anyone have any other input?

Guys, I just don't think I can do this anymore. The first time I went through this "dark night of the soul" with these diseases, and I started to come out of it, I said that I didn't think I could go through it again. Now I'm going through it again and I just don't think I can take it anymore. I don't even want to live anymore. Just too tired to keep going.

NQSS13 - Did you do the Mepron and Malarone this time around?


How about going back on the herbal protocol...very low dose to start....so that you don't keep having bad herxes...eventually you will lessen the load. Go back on the one you were recently on???

I totally understand how you feel. I can't imagine relapsing after feeling better...but please don't give up. You have your kids who need you.

You know it does get better....and you've been there before.


(((hugs)))

notquitesoscared13 said...
No, haven't done Mepron and Malarone this time around. Naturopath felt that Houtt., CSA, Sweet Annie, Teasel, Cat's Claw and Japanese Knotweed would cover all the bases. But I wasn't getting better. So I started the antibiotics. Now I just want to die.

I think you need to talk to your LLMD and LLND - about your feelings...they need to help you cope with this.


You CAN do this...there's options for you to try...lots of them.

notquitesoscared13 said...
Last time I talked with my naturopath, her advice was to keep with the antibiotics until I wasn't feeling suicidal anymore. Her feeling is kind of that if you're going to commit to the antibiotics, do it fully and give them a chance to work. But I just can't take this.

Oh no...no one should be continuing if they feel suicidal. You definitely need to take a break...and reassess.

What about the LLMD? What does he say about your feelings/symptoms that you've been experiencing?

You might need a pharmaceutical support to help get you through this.....you shouldn't have to suffer like this. I'm so sorry.

Girlie--Thank you. I haven't actually talked to the LLMD about the suicidal thoughts yet, as he is more than a 1.5 hour drive away. Mostly been checking in with the naturopath. I am on a very, very low dose of Duloxetine, which I have been on since before I got bitten the second time. I also have Ativan to help with insomnia, which I take 1-2 times a week, so as not to become addicted. I just took one about 15 minutes ago, though, which I have never done before bedtime before. It is helping.

Walking--I have tried many different herbs for psych symptoms in the past. Right now the only other herb I'm taking aside from the ones mentioned is Cordyceps. When I get like this all of my knowledge regarding treatment goes out the window. Which ones does he recommend? I can pick one up at the naturopath tomorrow. I need something to clear toxicity from my brain and/or reduce brain inflammation.

Re your second question--again, I cannot recall 100%, but re psych symptoms, I think it was mainly irritability/anger that sent me to the naturopath this time, and I think the suicidal thoughts only kicked in after I started antibiotics.

Thank you both for chiming in. Just the connection, alone, helps a bunch.

Thank you, Walkingbyfaith. Before you responded I did a bit of googling and ordered Siberian Ginseng (Eleuthro). Your list reminded me that I had been taking Kudzu for months and ran out about two weeks ago. I figured it wasn't essential and didn't repurchase. Maybe it's essential, after all. I had also been taking the Gou Teng, ran out, and likewise, didn't repurchase. Trying to save money. I believe my naturpath carries Kudzu but not Gou Teng. If so, I'll pick up the Kudzu tomorrow and begin that right away. Add the Ginseng when it arrives from Amazon, and see where I'm at. Thank you so much, again.

Hi Denise,

Thank you so much for responding. I'm having a VERY hard time at work today, which is not at all like me. I'm having suicidal thoughts in the middle of the day, crying at my desk, etc. I think your advice might be very valid. I am thinking Ammonia might be causing a lot of my problems. I have a phone consult with my LLMD this afternoon and I'm going to discuss the idea with him. I don't want to stop killing the bacteria if that's what my body needs, but I cannot go on like this, either.

Hi All,

Deejavu and Girlie, my LLMD agreed with you. As soon as I told him what was going on, he recommended stopping all antibiotics. He recommended the Burbur Pinella, but I don't have any. I also don't have any Neuro-Antitox, so I'm just taking a bit of Kudzu and Eleuthro tonight, since they've helped me in the past. Doc told me to stop all antibiotics and antibiotic herbs for 2-3 days and see if I feel better. Drink a ton of water with lemon or lime. If I feel better, he wants me to re-start one of the antibiotics, wait three days, then start the other. He wants me to restart the Tindi a minimum of 1 week after the second antibiotic.

If I don't feel better, I'm not sure what I'm supposed to do. He felt if I feel better it'd be a confirmation that toxicity is the issue. Didn't specifically mention ammonia, but I tend to think that's what it is.

I'm not sure I'll restart the abx if I feel better. I have to think about it. Doc suggested that if I have to stop and start again multiple times, so be it. He suggested that the toxicity should be less severe each time.

Oh, and I forgot about this stuff I'd picked up previously at the naturopath. Lymecore Botanicals Herx. Supposed to provide bacterial die off and endotoxin clearance support. Contains Molybdenum, Smilax Glabra and Cleavers (Galium Aparine). Anyone heard of it?

Praying I feel better soon. Cannot take much more.

I have heard of the Molybdenum for detox but can't remember anything else about it.

notquitesoscared13 said...
What the heck? I could have sworn I left a reply but don't see it? I already took the Eleuthro--hope it doesn't keep me up. Hopefully Ativan will counteract.

This really, really sucks. I HATE feeling like this. I cut a lemon a while ago and then got distracted. I couldn't find the half a lemon. I started to cry. My daughter (15) came in the room and asked why I was crying. "I can't find my lemon," I say. She rolls her eyes. I cut another lemon and squeeze it into my glass. Daughter, even though she's a teen, is actually pretty sweet. Helps me look for the lemon. Then think to look in the trash. Yep--I had already squeezed the lemon and thrown it out. So now I've got a whole lemon squeezed into my glass. Daughter and I have a laugh--me through tears.

crapty Lyme.

LOL--crapty, that's not what I wrote.

Aww...I'm glad you could laugh over that... Even if through tears.

I'm with ya today - holy moly - I'm in a Mepron induced fog right now and it's like my husband is speaking another language.
I'm looking at him, his mouth is moving, but not sure what he's telling me - something about the back brakes on our car

....and now he's in the garage and I can hear a power tool of some sort...I have no clue what he told me a few minutes ago.