IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
I'm so sorry to be posting this way. I'm so sorry. I'm scared and tired and sick and weary.
I've had 4 years of treatment. I am so tired of fighting this.
I have a husband and 3 kids with this disease and we are out of money. I just want to go to bed and not deal with anything or anyone anymore. My kids are 8, 10 and 18. I feel helpless to help them.
I just restarted minocycline two days ago after a few weeks break (went on amox for dental appointments since I have heart murmur)and it's letting me know that LD is still very much alive and kicking. I've had a few breaks during my treatment..one time going 6 months because I just couldn't stand to put another abx down my throat.
I wonder if I'm the only one with ALL these awful neuro/CNS symptoms. Muscle twitching, Involuntary limb movement, tingling, strange painful goose bumps that come and go suddenly...sometimes only on one arm or leg or only one side of my body. Neuropathy in my leg that NOTHING has helped. Hands that get SUPER hot, but not red, and so uncomfortable. Hot flashes. Rapid heart beat.
I can't sleep at night. When I lay down I start tingling all over or feel like I'm falling... or both. I keep waking up because my teeth are clenched so tight it hurts. I'm fatigued during the day.
Since starting back on mino. I almost feel NOTHING. No real emotions. My answer to everything is a bland "I don't care".
I can't help but feel like giving up trying! I've done detoxes, parasite cleanses, supplements galore. I can't afford anything else! People say you'll pay what you have to pay to get well... I can't make money appear out of NOTHING!
Found out yesterday that a 33 yr old man died from "complications of LD".... and my brain starts to scream. I'm scared out of my MIND!
What do you do when you have nothing left? When after 4 years... at some times feeling SO MUCH better...you get back to THIS?
I'm tired of being tired. I'm tired of being sick. I'm tired of having no other options for myself and my family. I'm sorry to have even typed this post. It's not good for anyone.
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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scorpiogirl
Frequent Contributor (1K+ posts)
Member # 31907
posted
Hi,
I feel such sadness reading your post.
Unfortunately you are not alone. So many of us are in the same boat! I don't know what else to say other than I understand your pain, frustration and hopelessness. But we must keep on keeping on.
-------------------- Posts: 1391 | From Lyme Land | Registered: May 2011
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nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
Very, Very sorry you are so low on every thing right now... This illness is a travesty
I just don't understand why we don't here from any celebrities, politicians, or the likes...
Don't rich people get this illness????
Just think if Oprah, Gates, Or even Tom Cruz put a little weight behind this.. Like Elizabeth Taylor did for AIDS....
I know that doesn't help you now, but seems to me we should be flooding a few with power, to help.. Please PM me if you can think of something I can do for you. My prayers are with you, Nonna Posts: 2563 | From Denver,CO | Registered: Aug 2011
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
You said, "I just restarted minocycline two days ago..."
Doesn't mino give emotional herxes? I think you're herxing.
what are you taking for liver support? You could stop the mino for a couple days and see if your mental health improves.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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beths
Frequent Contributor (1K+ posts)
Member # 18864
posted
I know money is tight, but is there anyway you could get another opinion?
Sometimes a fresh pair of (LLMD) eyes are helpful
Posts: 1276 | From maryland | Registered: Jan 2009
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Jane2904
Frequent Contributor (1K+ posts)
Member # 15917
posted
Please Hang in There!!
Carol is correct, you may be herxing. Mino is very strong.
Daughter could only tolerate Mino 50mg twice a day. Sounds like you have alot of Bartonella symptoms.
It is a hard road to follow, but we all need to stay the course. Better days may be right around the corner.
Hugs
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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Lymedin2010
Frequent Contributor (1K+ posts)
Member # 34322
posted
Please read this for those being treated and not getting far.
IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
Thanks guys. Goodness, last night was a tough night.
I do think the Mino is causing the emotional issues. Should I just keep on pushing through?
I finally got to sleep last night after trying to find a position that didn't make me "hum"/"vibrate" internally. I feel like that sensation is coming from my brain stem or something.
I took my minocycline about an hour ago and already "feeling" it.
Lymedin2010...those are interesting links. I had not heard of that protozoan before. Ugh. My LLMD does not test for things like that. He flies so far under the radar he barely tests/treats at all.
I'll try the no fat/oils diet and see if that helps any. I don't know how to get Ivermectin or anything else... I know my LLMD won't prescribe it for me. It's just the Mino and Diflucan for now.
Sorry if I upset anyone with my post.
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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posted
I know exactly how you feel. Of course I don't have those exact symptoms, but so many and trying to keep up with them and what to try to curb them, and everything is SO overwhelming. I have 2 kids and the youngest has lyme pretty bad. The older child has a strong immune system and although she tested + she is able to have a "normal life" so far and hasn't required tx.
Our llmd is 1000 miles away and we have run out of funds to go see him. He won't treat us for coinfections unless they show up on bloodwork and I think that has us both at a standstill in our treatment anyway.
He has found lyme, EBV, coxsackie B and CMV in us. But, there are no real tx's for the viruses there. We took valtrex for 2 years without helping them.
I think I'm going to have to cancel our next trip in January just because we can't afford it anymore. We are paying over $150 more in rent now and I've had to buy a car, help my older daughter with some expenses, etc.. Plus my hubby is bringing home less money due to increases in health insurance deductions..
With my younger daughters asthma meds, allergy meds and my pain meds it's all too much!
I'd like to buy a house, but at this rate I don't think we can. I can't even save enough to put down a down payment. I know the payments would be less than rent, but it's overwhelming as well to the point I just don't do anything!
I can see symptoms in my hubby, yet he still works. I'm wondering how long can he do it? I know this is working it's way through his body and when we he be disabled? HOw long will it take us to PROVE his disability? What will our income drop to at that point?
I Feel your pain, and am sorry you and I and everyone else has to deal with this terrible stuff. AND, that the docs on our insurance that we can barely afford, just ignore us and won't treat us effectively.
-------------------- One day at a time Posts: 409 | From TX | Registered: Mar 2004
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posted
I'll second the notion that a lot of the symptoms sound like bart. Mino helps with bart, but doesn't really kill it.
Icky, have you had meds that are effective against bart? The big ones are rifampin and the cipro family. Depending on the person and strain, zithromax can also be effective. I know a person who was mentally ill for four years - emotionally, cognitively, had to take some pretty powerful meds. He was fully cured with a month of zith. The most amazing thing I'd ever seen.
The point is that bart can be nasty, and mino isn't the right drug to treat it. Please check into it with your LLMD, or find one who'll consider the possibility.
Posts: 146 | From Maine | Registered: Aug 2011
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RZR
Frequent Contributor (1K+ posts)
Member # 20953
posted
I am so sorry you are feeling this way.
I think all of us have been there....me just a few days ago. However, now I am back in "fight mode."
Are you sure your current LLMD has treated all co-infections?
My first LLMD (6 weeks after bite) treated me for a whole year without treating any co-infections...kept telling me I did not have them.
Now, 2-1/2 years later I am still fighting and not feeling any better either.
Praying for your health and recovery.
You cannot give up...your family needs you and so do we!
Hugs and prayers
-------------------- Tick bite May 2009 Diagnosed June 2009 Posts: 2329 | From SouthEast | Registered: Jun 2009
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posted
i can relate very much to your pain, sadly. i wish you nothing but the best. i agree you have to keep fighting, but i know that some days that is much easier said than done. i wish i could offer you more than my comprehension of your suffering, but know that i am with you in spirit, and i wish you healing as soon as is humanly(or divinely or whattever) possible. love, jess
Posts: 651 | From ct | Registered: Sep 2011
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posted
Please don't be sorry for your post; it helps you to vent.
We get it. I get it. Almost 4 years of tx here and still very sick. I understand your symptoms completely, mine too are completely CNS issues, the internal vibrating, twitching, numbness, seizure-like/faint feeling + more. I GET IT.
I just had my PICC line pulled 2 days ago. After 11 months of IV, had to face the fact that it was not going to make me well. My latest LLMD consult thinks XMRV is holding me back from wellness. Who knows? So....am trying to tx with BW formula. Time will tell, I guess.
I'm sorry....we have to believe we'll get better, I know it's hard sometimes. Keep up the fight. PM if you ever want to talk more....TS
Posts: 566 | From West Coast | Registered: May 2008
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Did you treat for co-infections? that is important.
Did you try these meds? Mepron, Rifampin?
They helped me and made a HUGE difference.
My husband started on it, and in 2 months it really helped his whole psych problem.
His personality had changed, he had these weird rages, he would be blank and almost look like a psychopath! just blank! and would just start to yell at me!
Rifampin, for us is a miracle drug!
So is Mepron! both me and my husband had these weird symptoms, and drenching, drenching sweats!
GONE with MEPRON!!
so I cannot emphasize enough how much treating for co-infections, maybe even twice, can make a difference.
As far as the money issue goes, why not sell stuff on ETSY!
I just discovered ETSY, you all! Oh my goodness what a wonderful place.
You can do this to raise money for your meds.
that is what I am doing.
You can either go hunting for wonderful vintage items to sell on your OWN ETSY store!
Yes, you heard me right, your own store! Isn't it fabulous! I just discovered it!
If you are not well enough to hunt for vintage items, then maybe family and friends can all become part of this for you.
You could also have an antique store or a craft store. Maybe, there again, people in your life, family, and community can help you by making crafts to sell on Etsy to raise money for your meds.
Don't give in. Don't give up! You are special and important.
PM my anytime!
-------------------- I am not a doctor. I have no clue. Posts: 606 | From somewhere out there | Registered: Sep 2009
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