posted
This question may sound strange, but after a decade of struggling and feeling worse than ever i just wanna know how do stand the whole madness of lyme?
I mean the combination of ignorant doctors, lack of money, constant pain, non-understanding family, having a totally unresearched, misunderstood illness, missing live, giving up your dreams and so on...?
After all this years and tons of abx and supplements and wasted money I am not even where i was a decade ago after i got sick. I feel more and more like i'm a hopeless case. maybe taking high-dose steroids at the beginning of my disease destroyed any chances of a recovery.
Posts: 214 | From Home | Registered: Apr 2011
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Funny I should pop on here and see your post...as I am feeling similar feelings that you voiced as well.
I so feel your pain.
Maybe it's what I am currently taking -- A-L Complex by Byron White...I thought I was ahead of the game and further down the path healing from all of this and upon taking these drops, I have many symptoms, including depression returning...arggggggggh.
The feelings of discouragement do seem to pass or at least cycle. Sometimes when it comes down to it, the only we thing we can do is look around us and find the things that still move us, that we see some beauty in -- whatever it is that might lift the spirit, as this journey can really keep us so far down emotionally and energetically, which is never a good thing.
So sorry that you are struggling right now. Here's hoping that something clicks for you soon and you find some encouragement in whatever way you can.
Posts: 192 | From New England | Registered: May 2011
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
I believe anyone can get well. I was sick for 20+ years... I feel great. Have had 79 good days in a row.
I am big on prayer, meditation, and feeling grateful even when there isn't a lot to feel grateful for. It is important to keep a positive attitude.
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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sparkle7
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posted
Yes, I know it's difficult. I feel sad about all of the life I lost to this f-*#ed up illness. I got an e-mail about lecture on dowsing that had someone who was speaking about "Illness as a Pathway to Spiritual Evolvement"...
I wonder if they had to deal with 10-20 years of some of the stuff we deal with if they would still have that attitude? It's hard to stay positive after all of this.
All we can do it try to hang on minute by minute & hope tomorrow will bring something better. It my be a seasonal thing, too. Try to get outside in the light for some time during the day - it may help.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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GiGi
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Member # 259
posted
F u l l M o o n !!!!!!!!! Full Moon!
Means parasites are doing their wedding dance ready for copulation and reproducing. That is the time when most doctors' phones ring off the hook.
Eat cheese and dairy - some ice cream - parasites come out to feast - that's a good time to get them.
It is literally impossible to get totally well with an overload of parasites feasting in the body. And then treat toxic metals! (as if I hadn't said this before......)
Hang on - Tomorrow will be a better day.
Posts: 9834 | From Washington State | Registered: Oct 2000
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quote:Originally posted by robbiem: I thought I was ahead of the game and further down the path healing from all of this and upon taking these drops, I have many symptoms returning...arggggggggh.
Why does this sound so familiar to me...?
quote:Originally posted by sparkle7: I got an e-mail about lecture on dowsing that had someone who was speaking about "Illness as a Pathway to Spiritual Evolvement"...
I wonder if they had to deal with 10-20 years of some of the stuff we deal with if they would still have that attitude? It's hard to stay positive after all of this.
Absolutely. Im so tired of being given advise from healthy people who have no idea what it feels like to be constantly in pain.
quote:Originally posted by sparkle7: All we can do it try to hang on minute by minute & hope tomorrow will bring something better. It my be a seasonal thing, too. Try to get outside in the light for some time during the day - it may help.
Hope is probably the only thing that keeps us alive. Going outside of course is good for your vitamin D, but cold also makes my symptoms much worse, so i have to avoid it and cant get outside very much.
Momlyme, fantastic to read that you got well after such a long time. What was is that helped you?
Posts: 214 | From Home | Registered: Apr 2011
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sparkle7
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posted
Yeah, I know it's cold but it helps to wrap up in warm clothes & walk around the block. My sciatica has been worse but I try to do it when I can. I think it helps just to get outside.
I did get well a few times - so, it is possible. This illness comes back so we have to try different things to keep fighting it. Sometimes it's parasites, sometimes it's metals, viruses, bacteria, pain, headaches, etc... We just have to keep going after each issue.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
Sparkle, I also got nearly well several times with longterm rocephin, but relapsed terribly each time - as most of the people on rocephin do.
But the last time I got better was 2007! Since then Im only crashing!
Maybe going outside is not only good because of the vitamin d, but also because of the fresh air that gets inside your system.
Posts: 214 | From Home | Registered: Apr 2011
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dbpei
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posted
So sorry sickmate. It has to be so discouraging. It is disgraceful that our healthcare system has NO understanding of how devastating this disease is for some.
If you can at all get outdoors, breathe in some fresh air and soak in some Vit D, I agree that would be so good for you. If you can resume an interest in something that is totally unrelated to Lyme, that would also be a good thing for you.
I know how hard that must be when you are in constant pain. Would you be able to escape into a good book, enjoy some music, or even playing some solitaire on the computer? I know these are probably lame suggestions, but a diversion can be a healthy way to break the cycle of sadness and depression over this awful illness.
Do you have the support of a good lyme specialist? Maybe seeing somebody totally new would make a difference for you. I guess if you have been sick for many years, you have probably exhausted the supply of LLMD's in your area... but if not, now would be a good time to perhaps make a change.
Sometimes, it is a matter of treating something like parasites or heavy metals that have been missed along the way...
Would you consider trying herbal anti-microbials like Byron White herbs or Samento and Banderol? They help to boost your immune system in addition to killing the bacteria. A LLND or integrative practitioner could help you with this.
My heart goes out to you. You are not alone and I hope that by looking at some of the posts of people who have gotten well after many years, you will feel a little more hopeful.
Posts: 2386 | From New England | Registered: Aug 2011
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posted
I too took steroids before I knew what was wrong with me. I have been where you are. I have also at times felt hopeless crying over the life I lost.
Finding a good LLMD with an integrative doctor also on board to help with the other issues like adrenals, thryoid and hormones will greatly help.
As far as the ignorance of others, we all hope and pray that some day they will be enlightened by the facts about Lyme. Hopefully, they won't find out first hand by being infected.
It has been mentioned in some of the above posts that you must find a place in your mind to be calm and grateful for what you have. It is hard to be positive when the money is running out and you feel terrible but you must find that place to start the upward climb to wellness.
My husband and I both have Lyme so we are battling this all the time. People do get better and you have to hang onto that.
Sending prayers your way.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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posted
Honestly, I think this is one of the most f'd up situations people could ever be in. I was dx in 2007 after at least six or seven years misdiagnosed, when I now know Lyme was creeping into my life.
I wish someone from the CDC would log on this board and read what is really going on. How do normal, hardworking, energetic, progressive people get reduced to this?
I know people get better, because I have felt better for spurts, but than people get "un"better again.
It steals a little of my soul each time it tricks me and takes me back down the hole again. Just like all of us. I still sratch my heads and ask how, in this day and age, in the US, a medical situation can be this far out of control?
(sorry for the rant)
-------------------- "Yeah, I miss me too." Posts: 234 | From NY originally registered in 2008 | Registered: Nov 2012
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lymeboy
Unregistered
posted
Yea, I won't last like this. After 3 years of hardcore txing, I'm almost out of hope
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In my heart, I believe that the CDC, as well as our gov't knows exactly what is going on!
I hate to sound like I'm one of those people who is fanatical about conspiracy theories here, but seriously --- none of it makes any sense whatsoever.
- Doctors being harrassed or worse for treating
-IDSA lunacy
- Typical response(s) given by 90% or more of the medical establishment when presented with the idea or facts that you have or may have Lyme & co.
-inability to find the proper treatment, understanding, etc upon walking into an ER
- Inability for anyone to collect disability....
-Bizarro reactions from associates, friends, family and most often still misinformed about Lyme. And don't bother mentioning co-infections...part of this I believe is due to lack of real media coverage
-lack of accurate diagnostic tools
-lack of accurate treatment protocols/medications/research
-lack of funding needed to research
The list as we know goes on and on...
The entire situation is insane. We are being duped and most if not all of us know it inwardly that we unfortunately are dealing with a far greater problem than just being infected ---- because in all honesty we are seeing just how corrupt, deceitful etc those that are pulling much of the strings actually are. "Big Pharma" certainly fits the bill here, and God only knows who else has a vested interest here in not allowing the truth to get out, nor to allow those of us who need it the proper treatment we deserve and seek.
Given the full extent of it all, I have learned to become quite adept at praying -- as at this juncture there seems to be little else. Seeing the vast amount of things not working/working against us---well, I am sure most of you see my point.
Posts: 192 | From New England | Registered: May 2011
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posted
For those who are familiar with the film "The Matrix":
I liken it much to the main character, Neo --- who chooses to take a pill to learn about "the Matrix" the true underpinnings of how our world and reality actually work---- but is told that once he has taken the pill, his life will never be the same (an understatement)
Well, to me Lyme and co. are much like that proverbial & bitter pill as well --- once you get pulled into this --- it causes you to question everything imaginable --- and what you may or may not have once believed about your self, your world, as well as many other things...
Ok. I've gone deep enough for today, folks...just thought I would share.
xo
Posts: 192 | From New England | Registered: May 2011
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
I have to take one day at a time...sometimes one minute at a time.
I am thankful for the good days, and pray the bad days pass quickly.
Many days I feel like I've fallen down a rabbit hole and can't get out.
If I get too caught up in wishing I was healed 100% today, I become too distraught and pain becomes suffering.
Although we fight and fight to get better, we also have to accept today.
We don't get to choose what life throws at us.
Yes it sucks beyond belief, but thankfully, we are still here to fight another day.
posted
At some point the fight isn't worth it.
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map1131
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posted
Never, is the fight not worth it. The thing about changing and looking for other treatment protocols is hard.
It's work on ill patients to find the next course they want to take. That's the sad part. So many don't have a healthcare professional that can take them by the hand and lead them.
Many with lyme & co have to look at alternative treatments once/if traditional medicine fails you. With so different directions to go in alternative once again so much is left up to the patient.
You are in charge of your health and well being. Take a different course. Open your mind and heart on this site and find your next option.
It can get better. It's not over. Next step?
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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lymeboy
Unregistered
posted
Id rather live a life than just be alive. I think the hard truth is that some people, a lot of people keep relapsing and do not get fully well. At a certain point, we have to stop spending all of our free time scheduling meds or herbs or whatever is consuming all of our time and energy and have a life. Support our families, enjoy our families. Try to pay the bills. And none of it seems possible in this state. I am in charge of myself, but unfortunately, Lyme disease is in charge of my health and well being. If I was in charge it would have been gone long ago.
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
Lymeboy, your are very depressed.
When I feel as distraught as you, I have learned that I need to reduce the inflammation in my brain.
I reach for lots of fish oil, japanese knotweed, ashwagandha, eleuthero, rodalia. Also green tea.
Once the inflammation goes down, the depression, anxiety, bitter state of mind diminishes.
I'm not saying that the circumstances aren't depressing. They are!. But the illness itself causes so much mental and emotional pain through inflammation.
When you get that under control, it takes a huge load off and the depression lessens.
That has been my experience.
Another problem is having the money to afford the herbs, and alternative treatments.
But the things I am taking are not that expensive.
Please don't give up.
Posts: 1358 | From Midwest | Registered: Apr 2009
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
Good advice Rivendell. The disease messes with our emotions in addition to our bodies. There are many who have gotten better - some even 100%.
Have you read Katina Makris' book, Out of the Woods? She has been speaking in different locations and she has helped to keep me hopeful. It takes a long time to heal.
Please hang in there. We know your pain.
Posts: 2386 | From New England | Registered: Aug 2011
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lymeboy
Unregistered
posted
quote:Originally posted by Rivendell: Lymeboy, your are very depressed.
I reach for lots of fish oil, japanese knotweed, ashwagandha, eleuthero, rodalia. Also green tea.
Once the inflammation goes down, the depression, anxiety, bitter state of mind diminishes.
Another problem is having the money to afford the herbs, and alternative treatments.
.
This is my point. I am broke. at 38 years old, I am so far under water, I'll have to work into my 80's so that I can "retire". And that is assuming that I get well enough to have a job that even allows me to pay the rent, which I don't have now.
The herbs you've mentioned are all good herbs, some of which I already use. To use them all costs close to 200/ month. Can't afford it. This is my point. Not that there's nothing I can do, but that I am sick of doing them, to little effect. This is no way to live. It sucks. Thinking positive or negative has had little bearing on how I've progressed. Yes SOME people get better. But some don't. After 3 years, and still with clogged, collapsed ears, numb tongue, bouts of depression, anxiety and insanity, I'm close to being defeated. How much longer? How will I even live a basic life of paying bills and working if this keeps up? 5 years? 10? I won't last. Some of you may think that to be alive is good enough, but I don't. Some things are worse than death.
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lax mom
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posted
lymeboy: none of us are guaranteed 1 single day on this Earth...even the healthiest among us.
We only have today. Right this moment, you do not have to worry about retiring.
What keeps you going? Do you have anyone in your life that you love or that loves you? What gives you a little bit of joy even through this mess?
For me, it's my kids. They need a mom. So, I hang on and endure this massive suffering,this living hell that seems to have no end, because, sick or not, my hug means the world to them...and vice versa.
It's not about me anymore. I have given up on having a happy, healthy life. However, I can make sure that my kids are the happy ending to my story.
Forget about all the things you have to do to pay bills and retire, etc.
What are you here for? You are here for a reason. I know it's not just to take up space and suck up oxygen.
Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
Lymeboy,
I thought that you were probably having trouble affording these things.
I'm trying to think. I get the fish oil from Walmart, 2 large bottles for about $11.00. This will last me two or three months.
The knotweed is somewhat expensive. I buy 1 pound of powdered knotweed from "1st chinese herbs". This cost close to $30.00 including shipping. It doesn't taste good, but it will last me about three months. I put a little in water, stir and drink.
The ashwagandha, eleuthero, and rhodiola I buy from "swanson's" or "iherb". I buy alcohol-free tinctures - Nature's Answer brand - and they total about $25.00 plus shipping and they aren't even half empty. I started them in the middle of october. I use 4 drops each of the "ashw" and "eleuthero" and two drops of the rhodiola. I take this three times per day.
Don't know if these sources would help make it easier for you.
I give you hugs. All of us here need hugs.
Posts: 1358 | From Midwest | Registered: Apr 2009
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lymeboy
Unregistered
posted
right now all I am doing is taking up space and sucking up oxygen. There are a lot of things that I take pleasure in. And the only reason I'm still here is for my daughter. But what kind of life is she going to have under my care? What exactly will I feed her after I have "forgotten about paying bills etc"? How will she attend college? How happy will she be living in a homeless shelter? Today sucks. Tomorrow probably will too. Focusing on the here and now is as depressing as focusing on the future. It's easy to say, "forget about that stuff", but it is really not an honest thing to say. I'm not wealthy. In fact I am quite poor. All of my $ gets eaten up by this disease.
If ignoring my bills will somehow help me, I would really love to know how, because there's nothing I'd rather do than forget about money, bills and my future.
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Rivendell
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Member # 19922
posted
Lymeboy, I assume that you are trying to raise your daughter while on disability.
Would bankruptcy help you out financially at all? I had to do it. And it did help. But everyone's situation is different.
Well, please don't give up. I am worried about you. Your daughter needs your love right now. It is true that sometimes when things seem really dark, the light does come back out. It is not just an old saying, it is true.
I posted some herb souces above that are a whole lot cheaper that $200.00 per month. See my post above.
IF I remember right, you have Bart? Or maybe I'm thinking of someone else. I have Bart to. And boy can these illnesses do a number on our brains/minds.
How are you treating it? Maybe there is a less expensive way.
posted
Rivendell, thanks for your help. I won't take cheap fish oil, as it can be worse for you than not taking it. I use cod liver oil. And it helps a lot.
But again, you're making my point "The ashwagandha, eleuthero, and rhodiola I buy from "swanson's" or "iherb". I buy alcohol-free tinctures - Nature's Answer brand - and they total about $25.00 plus shipping and they aren't even half empty. I started them in the middle of october. I use 4 drops each of the "ashw" and "eleuthero" and two drops of the rhodiola. I take this three times per day."
say this to a healthy person, and they'll look at you like you have 6 heads. It isn't normal. It's exhausting. It isn't really truly helping, just slighly improving quality of life temporarily. and it is a friggin goose chase just to get the products.
My point is that none of this - NONE OF IT - is an acceptable way to live. 3 more years of swallowing, buying, scheduling, peaking, crashing, crying, yelling.... I won't make it. I don't know what the point of living life like this is.
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Rivendell
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posted
Sickmate, everything I'm saying is for you, too.
I read the end of this thread and saw that the original poster is you. I thought it was Lymeboy.
Posts: 1358 | From Midwest | Registered: Apr 2009
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
lymeboy: I am b-r-o-k-e. Lyme took everything from my family. My husband and I are both college graduates. We were never rich, but we were a 2 income family. He was a chef. I worked in Social Services.
Now, we are both on Social Security disability at age 38 and 36. We lost our home in the city that we loved and had to move to my hometown to rent a townhouse owned by my ex-husband...R-O-C-K B-O-T-T-O-M. If not for that, we would be living in my husband's parent's house.
Every last cent besides rent/utilities goes to pay for meds/supplements/LLMD visits. We have to put treatment up there with food. If we don't eat, we die...if we don't treat, we die.
Prior to lyme, our credit was perfect. We never paid a bill late. Now, our credit is ruined...who cares? They can't take what we don't have. Our priority is staying alive. I will not allow lyme to leave my children orphans.
We go by Dave Ramsey's Financial Peace principles. Creditors are last, first we make sure we have food/shelter/healthcare.
Your daughter will attend college the same way most average Americans, including myself, attended college, she'll get student loans, financial aid and work for it. There is nothing wrong with that.
All kids need is safety, security and love.
You are teaching your daughter resilience, and how to keep on going despite the obstacles that life throws at you.
Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
Lymeboy,
I guess I have been at this for decades. In the 1970's I had undiagnosed hypoglycemia. And guess what was said about hypoglycemia in those days? "Its all in you head. You are looking for an excuse not to face your problems. There is no such thing as hypoglycemia. That only happens to diabetics who take too much insulin."
I was sick for years and didn't know what was wrong with me. So when I found out I had hypoglycemia, I was so glad to have an answer to my terrible symptoms that I did everything I could to get well.
Constantly taking vitamins and herbs, eating high protein every couple of hours. Employers and employees didn't like it. I also didn't drink alcohol because it made me worse. I was an oddball.
And now with lyme, I am an oddball. Well, I guess I never wanted to be ordinary.
So here I am again taking all these things because life is unbearable without them. But if these things help my mood and outlook. Then it has a positive effect on those around me which helps those relationships.
I am just thankful that something can help. The suffering otherwise is unbearable.
So I don't know. But I'm just glad that there are things I can do.
Don't know what else to say.
Posts: 1358 | From Midwest | Registered: Apr 2009
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beaches
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posted
I don't think I've ever been at a point where I've had so much to say and yet at the same time, been at such a loss for words.
For now, I'll just send out hugs and prayers and my best wishes to all who've posted.
Posts: 1885 | From here | Registered: Jul 2012
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lax mom
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posted
We try to help each other the best we can. God knows I've felt like quitting many times.
payne
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Member # 26248
posted
It's like swim'm in an ocean, alone in the dark, there's a light and you swim towards it, and you just keep swim'n and swim'n and you bump into another lost swimmer and another, and we all swim towards the light. and a boat full of doctors wiz by going the other way ..
-------------------- TULAREMIA/rabbit fever ? Posts: 1931 | From mid-michigan | Registered: Jun 2010
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
up, for lack of a better word
Posts: 1885 | From here | Registered: Jul 2012
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posted
Sickmate asked how do we stand it. I made a decision awhile ago to help others and work for the change - ie, to notify folks as to what's going on, including those in medical offices, and I am educating them. That's one of my purposes in life, besides working to survive this illness!
Another is to try to find the remedies that work. Each of us is different, so it's an experiment. When I find something that helps, another piece of normal life comes back, and that's a win.
Posts: 13116 | From San Francisco | Registered: May 2006
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lax mom
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posted
payne: you summed it up completely.
Any given day, when one of us starts to sink, those who have strength swim over and help them up.
poppy
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Member # 5355
posted
Lymeboy, you do have a job now. It is staying alive.
A sick father is better than no father at all for your daughter. My parents are gone now and I miss them all the time. If I could have them back sick instead, I would be thrilled.
Yes, the situation is lousy, beyond belief, enough to make anyone depressed. But it is also true that the disease(s) affect your emotions.
Posts: 2888 | From USA | Registered: Mar 2004
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lymeboy
Unregistered
posted
But how thrilled would your parents be to be back and completely ill? Maybe they'd rather not live in misery. What kind of life is that?
Everyone, I appreciate the encouragement and support. It does help. But what I am saying is that something is breaking in my will. Maybe some of you have a lifetime of fight in them. That is commendable. I don't. I had a healthy, happy and good life before all of this. I was on my way to achieving something substantial, and this disease took everything away. The way I live now is not a good life. In fact it is a sh!t life. And I am saying that at some point, none of this will be worth it. I live in a nightmare of pills, headaches, fever flashes, dementia, hallucinations, temper flares, bouts of insanity, and basically being uncomfortable all the time. Except, I am already awake. It isn't a dream, because through all of that, I have to do the things that parents and taxpayers/bill payers do. And I am not doing it too well. So I am saying that whatever people do to keep themselves hopeful and positive, I have done them all. I have forced myself to be positive and keep plowing away. But after 3 years, with so many relapses, I am losing hope, and obviously, not thinking positive. So the methods worked for me for about 3 years, maybe I'll last another two with the attitude I'm developing now. These are the worst times I have ever encountered. I'd rather not be around to see them get worse.
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lax mom
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lymeboy: I am very worried about you. Your daughter would be scarred for the rest of her life if you were not here, sick or not.
When we have kids, it's not about us anymore. Yes it is PURE TORTURE. I've had a fever everyday for over a year.
It's not fair. It sucks...but you are the only dad your daughter has.
Look, I have to take Effexor and Klonopin every single night to get through...otherwise I would cry all day and all night because my reality is a nightmare too. I see a Psychiatrist and therapist to cope with this hell.
It may not be ideal, but it's keeping me alive for my children.
**** the bills. Pay your rent/utilities, apply for food stamps, apply for Social Security...do what you have to do to get well.
posted
[QUOTE]Originally posted by lymeboy: [QB] But how thrilled would your parents be to be back and completely ill? Maybe they'd rather not live in misery. What kind of life is that?
Everyone, I appreciate the encouragement and support. It does help. But what I am saying is that something is breaking in my will. Maybe some of you have a lifetime of fight in them. That is commendable. I don't.
I had a healthy, happy and good life before all of this. I was on my way to achieving something substantial, and this disease took everything away.
The way I live now is not a good life. In fact it is a sh!t life. And I am saying that at some point, none of this will be worth it.
I live in a nightmare of pills, headaches, fever flashes, dementia, hallucinations, temper flares, bouts of insanity, and basically being uncomfortable all the time.
Except, I am already awake. It isn't a dream, because through all of that, I have to do the things that parents and taxpayers/bill payers do. And I am not doing it too well.
So I am saying that whatever people do to keep themselves hopeful and positive, I have done them all. I have forced myself to be positive and keep plowing away.
But after 3 years, with so many relapses, I am losing hope, and obviously, not thinking positive.
So the methods worked for me for about 3 years, maybe I'll last another two with the attitude I'm developing now. These are the worst times I have ever encountered. I'd rather not be around to see them get worse.
Tbanks for letting us know how you feel. What I'm wondering is, are you seeing a good LLMD? Are you trying new treatments to see what can get you more comfortable in any way at all, even if it's just symptom by symptom that you're tackling?
Are there other treatments for the illnesses that you have - is it Lyme and co's? - that you haven't tried yet?
Posts: 13116 | From San Francisco | Registered: May 2006
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lymeboy
Unregistered
posted
Robin - I see a great LLMD. I have excellent progress, there have been solid weeks go by at 70-80%. But I always crash, and I always wind up back where I was, and it takes just as long to crawl out of the hole. It is like "false progress". Backsliding after a good bout is worse than the actual disease itself. Every backslide, I get a little less hopeful. Right now I am as bad as I ever was.
Lax mom, I know. I have to be here for my daughter. But she is depressed. She is struggling with her life and a lot of it is because of me. And what is coming down the pike is not looking too positive. We could be out on the street at some point. food stamps? I get $16 / month. I might as well get nothing. SSI? I need to be out of work. and that would probably pay less than the low paying job I have now. It's just not really worth it at some point.
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posted
Lymeboy, do you know why you crash? For me, my protocol can stop working, and then I have to find something else.
Are there other supplements you could be taking to prevent the crashing? Have you done any bloodtesting to check your biochemistry to see if there's anything to be tackled with treatment?
I know we're all different, but bloodtesting does help my doc see how to treat me next.
So what has your doctor said about these up-and-down episodes? Do they have any ideas about how to stabilize/improve you?
I think it's better to focus on the present and what could possibly be done now, rather than project onto an unknown future.
Posts: 13116 | From San Francisco | Registered: May 2006
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Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
Lymeboy,
I read a wonderful book called "The Instinct to Heal: Curing Stress, Anxiety, and Depression without Drugs and without Talk Therapy" written by a psychiatrist.
One of the many things he mentioned in the book was how much depression, bipolar, anxiety, is due to inflammation in the brain. And boy do these infections cause that.
He emphasized that the omega-3's work so well in reducing the inflamation, even helping to HEAL AND REWIRE the nerves in the brain. The omega-3's help the brain cells to better communicate with one another.
He has seen people so distraught, suicidal, extremembly bi-polar, with symptoms of dementia get well taking 6 to 9 capsules of omega 3 fish oil per day. (It must contain both the EPA and DHA.)
He stresses that cod liver oil IS NOT a good source for these. (Maybe cod liver oil helps you in some other way, but according to him, IT WON'T HELP WITH BRAIN INFLAMMATION.)
Please give this and the other things I suggested for inflammation a try. (japanese knotweed, eleuthero (increases typtophan), ashwagandha, rodiola, green tea).
***Believe me, I have been where you are many times. Not just from how bad I feel but from the devasting way this affects you on all levels (financial, social, etc.)
But when I get better balance in my brain, I can recover and still find joyful things in life.
lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
lymeboy: the fact that there are several weeks where you are 70-80% is amazing! That means that healing is possible for you. If it wasn't possible, you would NEVER, EVER get up to 70-80%.
When I used to have horrific herxes from Babs, every week I would freak out. That was until I started to expect them and plan for them. I didn't feel so powerless.
When you are having one of those great weeks, soak it all in.
My best has been 25%-30%. That was one month, back in June. But I know it's possible to get back there.
What type of treatment are you receiving?
I was seeing the best of the best and getting sicker and sicker. His treatment works for 95% of his patients, but it didn't work for me.
I had to change gears. Now I have a fresh dose of hope to push on a little more.
posted
I try to keep in mind that there are a LOT of things MUCH WORSE than lyme. Cancer is running rampant in our society. I have a friend whose wife has terminal cancer and whose son also has leukemia. I'm sure that he wishes they only had lyme.
So, when I'm feeling sorry for myself, I try to remember that having lyme is a cake walk compared to what many people have to endure.
Posts: 177 | From Ohio | Registered: Aug 2012
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posted
Lymeboy, I used to think something was breaking my will too.
I had what I called "Black Days" when EVERYTHING looked so hopeless.
I started on Nystatin for fungus and antiparasite meds.
Within 2 months I was sooooo much better. I didn't look drawn in and stopped loosing weight.
My mood is much better, my body doesn't panic anymore.
I think I was literally being sucked dry my the parasites.
GIGI and GAEL and great posts on here. Read their posts.
Swanson Vitamins online have very reasonable supplements, check them out.
Also, I just read the book Beyond Lyme Disease.
It talks about why some people can't get well and what to do about it.
A doctor gave me some vauable advice.
Even on my worst days he told me to find some enjoyment or beauty in the day.
It took me months of discipline to do it.
Now I always look for something good or beauty in a day.
It is just a small piece of hope in each day, but it helps.
Also, I would agree, that helping others helps me function in this world better.
I started doing research for a Lyme organization.
Even if I feel like @#$% at least I a doing something that counts.
Recently I was sitting in the doctors office after a bout at the ER.
I didn't feel well at all but there was a woman in a wheel chair trying to take off her coat.
I later found out she has MS. She struggled and struggled with her coat.
I finally asked if I could help her.
She was grateful and made me forget my own woes for a while.
Diversions are very beneficial, even if it is just for a few minutes.
I know that it is easy to get so low and down that going out of the house seems impossible and seeing people isn't fun, but that is where I find my healing.
It certainly isn't by myself in my quiet house by myself.
I finally told myself that my life was playing out in front of me
and if I wanted memories of my life, sick or not, I had to get out and do things regardless.
This is not a dress rehearsal, this is our life.
Yes, there are still days I can't go places, but I would say about 3/4 of the time I am well enough to do something.
Even if it is just going to the store, getting a movie, or visiting someone.
This is a good time to go out and look at Christmas lights after dark.
I do this with my husband every year. It is a treasured activity for me.
Turn on some great Christmas radio music, drink a glass of hot water
(warped, I know, but can't drink tea or coffee), and enjoy the colorful lights.
I do have to sleep more because I choose to engage in life.
Ironic isn't it? I have to sleep if I want to live. Crazy!!!!!!
Don't give up, don't let this crazy wicked disease win.
Think about doing the parasite meds/supplements.
My mood is much much better since I did them. I still do them periodically.
I think that has been the one thing that has helped me the most along with the fungus meds.
Hang in there, we all have had some very dark and threatening days.
Focus towards the light and know there are goods days coming.
Another thought, the longer we live the greater the chance of a breakthrough.
We may be the generation that sees the cure.
Not holding my breath, but anything is possible.
Posts: 620 | From Ks | Registered: Oct 2011
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
Patriot, Happy that you are of the mindset that there are "a LOT of things MUCH WORSE than lyme."
FYI, Lyme Disease is no "Cake Walk" I'm here to to report that tidbit to you firsthand, from the trenches.
On the other hand, since you appear to be one of the lucky ones, godspeed and God Bless!
Blessed be the ignorant. You walk amongst them.
Posts: 1885 | From here | Registered: Jul 2012
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You might want to re-read my post. I did not say that lyme was a cake walk, I said that lyme was a cake walk compared to what many other people have to endure - like my friend whose wife has terminal cancer and son has leukemia. I'm sure than anyone with terminal cancer would trade places with someone with lyme in a New York minute!
As for luck, the issue here is not "luck". The issue here is how a person CHOOSES to respond to adversity. You can CHOOSE to respond with self-pity and dwell on being sick. Alternatively, you can CHOOSE Cozynana's advice above and CHOOSE to find something positive in every day. I CHOOSE the latter.
Now, go get a piece of paper and a pencil and write this 100 times:
"I am not a victim" "I am not a victim" "I am not a victim".....
Again, I refer to Cozynana's post above: 'This is NOT a dress rehearsal, this is our life'.
Since there is no "cure" for Lyme, we may have to live with Lyme for the rest of our lives. Will you let lyme rob you of your life? I WILL NOT! It's not about being sick - it's about attitude and determination. Fight for EVERY MINUTE! LIVE EVERY MINUTE!
Posts: 177 | From Ohio | Registered: Aug 2012
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quote:Originally posted by sickmate: This question may sound strange, but after a decade of struggling and feeling worse than ever i just wanna know how do stand the whole madness of lyme?
I mean the combination of ignorant doctors, lack of money, constant pain, non-understanding family, having a totally unresearched, misunderstood illness, missing live, giving up your dreams and so on...?
I'll tell you what I do.
I REFUSE to deal with ignorant doctors! Period! If I accidentally find myself with such a doctor, I FIRE THEM!!! Problem solved.
Constant pain? Beyond pain medicine, I would echo Cozynana's suggestion to try to find something to take your mind elsewhere. Find a new hobby. Take a part-time job. Watch a movie. Read a book. etc.
Non-understanding family? EASY! Don't talk about Lyme with them. If they ask how your doing - say "FINE"! Problem solved.
Unresearched, misunderstood illness? Find the best LLMD you can and try different treatments under their direction until you find something that helps.
Missing life? Don't miss life! You're sick, not dead! PUSH THROUGH! Don't miss one minute that you don't absolutely have to.
Giving up your dreams? Don't do it! Keep your dreams and find new ones!
posted
I agree, don't mention lyme in front of family who don't care or understand. OR around ignorant, self-righteous docs either.
Pain, well I choose to go to a pain clinic. Surely, after seeing a myriad of docs you have at least one diagnosis the clinic will accept. If you have insurance they will want to accept you if they can. Money for them. My pain clinic has really helped my quality of life and I'm for one, grateful for their help. Whether they really believe my lyme is irrelevant.
I know it's hard, and there are dark times. But, for my children and to have any semblance of a life, I choose to keep pressing on. In the face of "you'll be in a wheelchair soon" so many times I can hear it in the back of my mind A LOT, I still choose to think I'll keep fighting to keep that from becoming a reality.
But, if it does, I won't give up. Why? I can't. My dd's both need a mom. My dh needs his wife. I need to still be here, just for me too. I refuse to let this hideous disease take me at this point. Now, that could change, but not at this time.
Keep fighting, and I wish you all the best!
-------------------- One day at a time Posts: 409 | From TX | Registered: Mar 2004
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Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
Well, I found that I couldn't control depressing paranoid anxious thoughts until I was able to control the inflammation in my brain.
That's why I posted suggestions to lymeboy to help him.
Now I can find joy in each day, even in some small way.
But sometimes people have to treat what is going on physically (inflammation, imbalances) before they can find that joy.
We are all affected in different ways by these infections.
I'm just thankful that I can afford to buy the herbs that help the inflammation.
I know that many people can't, and therefore they must suffer because the inflammation isn't being dealt with.
Also, I was way too sick to be with people. Now that is improving somewhat, but for years I couldn't do it. Didn't know what was wrong with me all of those years. Was told I had CFS.
There was no "pushing through" for me. That only made me worse. I had, and still have to some extent, "Post-Exerional Malaise", which is the hallmark of chronic fatigue syndrome. Any attempt to enjoy life leaves you messed up for days, sometimes weeks.
So, sometimes people are truly locked out of life because of this disease, especially if money is in small supply and they don't even know what is wrong with them. And maybe they don't have insurance and can't even afford to see a PCP.
This happens to people. This happened to me.
My situation is much better now, but I know for many peole it is not.
My heart goes out to them.
Posts: 1358 | From Midwest | Registered: Apr 2009
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