phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
I don't want to be negative and its so great to hear of those of you with remission and great improvement. But what about us, the ones that nothing seems to last .. Am I the only one?
I will have a few good days and think Yeah, even went job hunting then out of the blue here is the "hell" again putting me back in bed for a day to a week.. Thank God I do seem to bounce back but never had a full month of remission.
Anyone else or am I the only one?
Posts: 1058 | From VA | Registered: Oct 2010
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i gave up getting back to 100% after i got a second head injury
i have so much permanent arthritis damage and systemic problems-thyroid, adrenals, etc
i know i will never get back to where i was
i just try to find something to be happy about when i can...i do have my long term goals .. if i do get better but i dont see them as reality (sort of like thinking about what you would do if you won the lottery)
i try to be happy with where i am
i know so many worse than me...i have seen so many suffer more than me...i just try to enjoy what i can now...before i lose that
i guess it might be easier becasue i am older-retired/disabled...my kids are independent...
but what i have seen...ppl unable to see, hear, walk, get away from pain...i can do some of those things now: read, watch tv, movies, listen to music, putter in my garden from my wheelchair, make scrapbooks and old photo bks...help others a little sometimes...
i have watched ppl unable to do that stuff...so i let myself feel i am getting a treat when i can. alot of that is stuff i didnt have time for when working and raising a family and fighting disease so hard.
i really dont think i am infected now...but i have residual stuff that disables me...
i just found it too frustrating to think getting better was right around the corner...so i try more to find joy today
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
Thank you Lpkwyak, for your wise input. Yes, I must be thankful for what I can do now as I too am older (70) but it is hard, especially remembering how things use to be. That is one thing I must let go.
I have such anxiety/depression with the crashes that I cry for days. This is the worst.
Trying so hard to put this all in God's hands but keep dragging it with me..
Posts: 1058 | From VA | Registered: Oct 2010
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i was for sure suicidal at one point. somehow i decided...i do want to go on and experience what i can. i am very sad about many things. i come on here and rant and rave and complain...but then i go on.
i hope my rantings dont bring ppl down or make them mad...im glad i have a place to get it out of my system and then i go on with my everyday ppl
i learned early on it doesnt help to complain to those around me. they dont get it like those here do.
un controlled nerve pain is a problem for me. it is mostly controlled...but when it isnt i cant enjoy anything and wonder why i am here. so far i have gotten thru it...it doesnt happen often...but there is a line of pain and disability i am not willing to accept.
there are always goods and bads...right now...last week i missed my 2 babies getting their doctorates in CA and chicago...and my oldest racing his car in DC. and i cried a lot. i rarley get cards from my 4 kids...but they are healthy and successful and working hard to make a good life for themselves...so i cry and then i have to let that go.
on the positive side...in october my first grand child in 22 years is being born...and i pray i will be able to hold her. and get to her. she is in nj.
i get a special good feeling when i smell a flower or hear good music or see a beautiful sunset and i try to pay attention to that feeling...and see where i get it from...and i try to keep doing those things. good movies and books. talks with certain ppl.
try to figure out when makes the feeling for you and try to keep doing that...
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
Praying for you and holding that grand child. I have four grans and four great-grans. Nothing brings joy like they do. Especially when they are small before they start the worrisome teen years.
Think I have worried more over my grands than my children.
posted
I think I might be stuck sick too. I'm praying for healing. I got sick in the mid 80's and have had 30 years fighting lyme and recently bartonella and babesiosis..I miss working and being around people. I lost my kids because they had lyme and my ex told everyone they weren't sick and used dcf against me. I miss them and cry all the time.I am working to get them home in the courts but its hard. Jesus has been so near when I call out to him. I find support from the Christian teachings and music on you tube. Its sad and scary to be sick and alone. It is comforting to talk to other lyme patients who feel the same. I wish I had tried harder in the beginning to get better but in my family we are all stoic and just keep going. Not a good idea with this disease! Well, God bless you all and healing for you all.
Posts: 61 | From wilton | Registered: Mar 2010
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posted
Phyl, I was kept on a "maintenance" low dose of doxy, maybe 16-17 years, because at some point we gave up trying to kill it. Way back then, I tried something called "pulsing" doses, but I never did better than every 48 hours. There were breakthrough flares but they were relatively brief ( most of the time measured in hours, not days). Now I've developed a reaction to the drug, the manufacturer won't tell me if they changed the formulation. ( It's actually Vibramycin, the non-generic doxy, long story). So I was recently switched to Biaxin, and it's been so very rocky, and I'm not sure it's working at all.
The point is, no, you aren't alone. I relapsed pretty quickly every time I was taken off meds. I wish you could have a low maintenance dose like I did? Would your doc consider it? It gave me many functional years. Now it looks like I'm starting over, and struggling with my feelings about that, too...
Posts: 12 | From NY | Registered: Jun 2013
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Ipkayak, I love your positive attitude (beautiful).
Buhner thinks abx work for about 60% of people (below).
Byron White herbs got me to remission, but then some major stress brought it back. I'm back on the herbs.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
Kayak.. well said, my good and strong friend!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96238 | From Texas | Registered: Feb 2001
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phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
Thanks everyone.. Hate you are stuck too but glad I am not alone. Post more later not feeling well lately.
Posts: 1058 | From VA | Registered: Oct 2010
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I became too sick to work or do household chores in 2001. Dx in 2003.
I recently started receiving medicare so when health allows I am hoping to find a LLMd that takes medicare.
I know I still will be limited on what treatments I will be able to take due to lack of funds needed.
I assume I am still bedridden for the most part due to the lack of funds to improve on my health.
I also am not able to read a novel, be upright for longer than 10 min, talk on the phone, etc.
Hoping to come back and read what others have posted when that part of the brain is working better.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
Please don't rule out mold as part of your illness. If I was still living in mold I'm certain I would still be sick. It feels just like Lyme when I have an exposure.
I had no visible mold, and no smells in my house. I did an ERMI test through EMSL labs (they are the cheapest) and my scores were crazy high. This was a big piece of the puzzle for me.
Posts: 845 | From Northeast | Registered: May 2011
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
RC1, how did you find the mold, and how did you get rid of it?
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
I had the HLA DR test and found out I was mold susceptible. I didn't even know there was such a thing. What happens with biotoxin illness is there is a sicker quicker phenomenon.
What used to make me just a little sick (pre Lyme) now makes me very sick.
When I found out about this I tested my house using the ERMI test from EMSL labs. It's about 150.00. I tested 2 areas in my house.
My basement which had had water damage, and I was suspicious of my upstairs shower because it had leaked in the past.
We ultimately just gutted the basement and the upstairs bathroom, both areas were pretty beat and needed to get redone anyway. We did some other stuff too since we were in dust up to our eyeballs.
I recently retested and we have an acceptable ERMI score now.
I think to find the mold you have to do some detective work, there are some things that are obvious. Bathroom exaust fans vented into attics are common, wet basements, leaking roofs, pipes or tile showers (in my case) where there is water intrusion there is mold.
It starts to grow within 48 hours.
Posts: 845 | From Northeast | Registered: May 2011
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i removed all floors in 1000sf house down to the slab...all wet moldy and then found out toilet had been leaking for years-found out when a worker came and told us he had been here 10 yrs ago...cant see it now but sometimes smell it and when i do i get resp sx...donte know how to remediate if cant find it...mold inspectors here were not good...they were wrong about first floor...and that was the easy part
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
I am getting a lot closer to being in remission. That still means I will have neck and back pain from a horse accident and knee problems from Lyme eating away the cartilage.
A pill can't fix the permanent things. All we can do is try and stay as strong as we can with whatever ability we have to do that.
The biggest thing is attitude. We have all suffered, but we have to find an end to that and find joy in life.
What ever makes you laugh or giggle, you need to do that every day. That is an immune booster for all of us.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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posted
I have been treating for almost 5 years. I cannot say that there has been anything that has made me better.
I have tried so many ABX and Supplements and nothing makes a difference. I have never lost hope and am more hopeful after every LLMD visit.
But in the last 6 months my symptoms have been worse and it is getting harder to remain hopeful and doubt is creeping in. And I dont like it.
My main symptoms are constant headaches, pain in feet, hands, shoulder/neck, occasional nerve zap pain, and anxiety. I have the headaches all the time and they are getting worse. All other symptoms seem to come and go, and some stay for extended periods.
In the 5 years I have only had about 1 week total where the headache was not present. How do I mentally stay strong and hopeful?
Do I need to change my focus away from thinking about long term remission and more toward managing symptoms? If I could just get rid of those headaches, I could manage the other symptoms.
Posts: 164 | From California | Registered: Aug 2009
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Thanks RC1. So did you feel better immediately after finding/fixing the mold? What improved?
The previous owners of our house put a new roof on, so there had to be a leak somewhere (can't find it).
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
I have treated with herbs, abx, Rife, silver, supplements...on and off mostly on since 2007, and have relentlessly researched and tried everything. I have had minimal improvement and it feels like my immune system just doesn't respond to anything. I can drink a bottle of herbs with no reaction, take abx with no reaction.....it's the strangest thing. I did herx and improve early on, but that stopped when I went on aggressive treatment. It's like my body just gave up.
Is there any hope? there really isn't anything left to try and I have two small kids.
Posts: 3528 | From US | Registered: Apr 2007
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posted
Catgirl, here's how it went for me, did the remediation, went on Cholestrymine. I could only do one dose a day because there wasn't enough time in the day between antibiotics and supplements.
It took about 2 months before I started having times when I felt normal. I'm sure it would have been quicker if I did multiple doses of CSM.
Here's the thing, 25% of us have the genes that we can't detox mold mycotoxins well, and 50% of the buildings in this country will make us sick.
When I get a mold hit (spending time in a moldy place) I get sick. Sick like I felt with LD and coinfections. It takes me about three days taking Cholestrymine or Welchol to start feeling good again.
Here's the thing, I think I'm in an okay spot, no mold smells, no evidence of mold and there is mold, and I get sick. It is very hard to manage this situation.
I am 100% sure that if I did not do the remediation and the Cholestrymine I would still be sick.
Posts: 845 | From Northeast | Registered: May 2011
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posted
CD57...sounds like our experiences have been similar in trying to beat these bugs. Are there any suggestions as to how we deal with this mentally when we see no improvement over a prolonged time.
Posts: 164 | From California | Registered: Aug 2009
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posted
up....up....up
Posts: 164 | From California | Registered: Aug 2009
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MannaMe
Frequent Contributor (1K+ posts)
Member # 33330
posted
Have you done the testing for the MTHFR mutations?
My husband has the one that his body doesn't release the toxins very well. He seemed to be getting sicker instead of better after an improvement in the first year of treating.
Posts: 2391 | From USA | Registered: Aug 2011
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posted
I can so relate to the endless feeling of never getting well. I have been at this since 1988....most of the time in bed in a darkened room. I just finished a year of IV Rocephan and had to decide whether to invest the $2K in getting a second opinion, tests, etc. My doc is very well known LLMD and he says I have tough case. I've learned many tricks to deal with pain, am delighted that I can once again read books and follow movies. I think the trick here is to do what you can to enjoy life and go on. I have begun to ask my sons for more help and support and they are trying to get me moved into a better place, closer to them.
But in the end it is up to us to hang in there. It is a challenge to be creative to find things that make us happy. I keep my art supplies close by my bed in case I get inspired. I write when I can. I take photos from my porch of the beautiful vultures who live in the vineyard next door.
Be kind to yourself and find joy. It's still there....just a bit fuzzy.
My ultimate goal is to have a webpage for my writing and artwork and to invite people to post videos of their daily lives on my site. Maybe if doctors and legislators had a picture of the lives we live they would be more inspired to get off the dime and fix it!
People who are as challenged as we are cannot stand up, let alone stand up and fight for ourselves. So maybe we need photo journals to tell our stories for us.
I still have hope. I hang on to hope. And my Faith is unwavering.
But I still wonder what's next. Am I doing all that I can do to get well, to take care of myself. Asking for help was a big deal for me but I think it was right.
So ask for help if you can. Keep your Faith. And smile!
-------------------- DOCTOR: "I don't think you are sick." PATIENT: "We are all entitled to our opinions. I don't think you are a doctor." Posts: 697 | From Northern California | Registered: Jul 2009
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
rc-i sealed the slab myself but nothing for sure seals it permanently...moisture can still come up and go to framing etc...but it did make a big difference
fathful...i didnt know we had cartilage troubles and horses in common...altho you may have told me and i forgot...i miss riding so much...but have many health things going on now
farraday-i like what you and can relate...hope things get better for you
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
I think it is about managing symptoms. Pooldog, CD57 and Farraday and anyone I missed, have any of you tried treating parasites/heavy metals? I have to knock the parasites back just like lyme, and feel better when I do. Getting rid of metals really helps too.
I also feel fortunate that I get to occupy this body to still enjoy a little gardening, seeing nature, breathing fresh air, playing with my cats, laughing and enjoying the ones I love. I try to focus more on this stuff now. I am much less obsessed with lyme when I do this.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Hi all, I have been in lyme treatment for 3 months, so I am in no way at some of the same treatment lengths as some of you, so please don't think I'm some cheeky upstart.
But something someone said in this thread resonated with me.
We need to be kind to ourselves.
I need to be kind to myself. Maybe most of my feeling hopeless comes with wishing I could do the same activities and the same hobbies I did before treatment. Since starting treatment I have quit 2 activities I lived and breathed for.
Losing those hobbies is worse for me than the constant head pain or the partial paralysis. Pretty much losing those hobbies is the worse symptom of all.
But if I was kind to myself I would stop dwelling on the things I've lost and the relationships I'm losing, and try to focus on the things I can do and the people who are still around.
I keep a journal now of small accomplishments. Like, "sat on the couch. Watched TV". Or "did a load of laundry".
Because I'm hoping that I can look at those entries a year from now and say, "Today I understood what I was watching on TV, and my housework is done." And see how far I've come. (hopefully).
today is a bad day, so this is the most positive I can be currently.
Hang in there, guys, be kind to yourself.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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