phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
Wondering how many are housebound/bedridden. I don't really feel like going or doing but yet if I made myself I could. I just do better staying home.
Then there are days I couldn't go if I had to.
For now I am off all meds, not a wise choice but I am so confused about the long term antibiotics. I had a friend that took oral for a couple of yrs. then went to a LLMD for IVs . She did everything the doctors told her this has taken 5 yrs or longer. Now she is having so many complications from the antibiotic use that she is worse off than with chronic lyme and she had such high hopes.
Hambone
Frequent Contributor (1K+ posts)
Member # 29535
posted
I'm 95% housebound and couchbound. Too weak to do much.
The only time I go anywhere is to the doctor ( pure torture ) or for a short car ride just to see that there is life beyond my walls.
And this is coming from someone who used to never stay home...always had to go go go. Always had to be somewhere, bike riding, rollerblading, cruises, get-togethers, etc.
I cry every single day ( even at this moment ) for what a pitiful piece of crap my life turned into. I feel like I died, yet I wasn't allowed to go to heaven, and I have to stay here and watch others live their lives.
Posts: 1142 | From South | Registered: Dec 2010
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posted
I'm 95% too. My husband carries me up or down the stairs. I can do it myself if I absolutely have to but it really has to be necessary to put myself through that. I go out approximately every week. I go to dr. appts. and hubby helps me get out of the house every once in awhile. We drive to relatives for holidays and to friends' homes once in awhile just to get out. I can walk, but it's slow, painful and if I do too much I pay for it.
I am so lucky to have a supportive husband and family. My kids are wonderful. Either my mom or my dad (or both) are here everyday to do laundry, fix food, drive carpool, and just help with the kids. I wish I could share them with some of you who don't have this support.
I am just starting on antibiotics too. I did one month of doxy and herxed pretty bad. I'm now moving on to a few other meds. I'm very scared of it like you are Phyl, but my RA is getting so bad, that I'm now more scared of it than the antibiotics. I hate making decisions based on fear.
I get discouraged too and just wish I could have my life back, but I just know this has to end sometime. Maybe I'm delusional, but I really think I will get through this and end up better than before I got sick. I can't wait to forget how this feels!
Posts: 707 | From Colorado | Registered: Jul 2010
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Yes. Not doing well enough to write more right now.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Don't be confused by treatment complexity. Lyme can kill. It needs to be addressed. But, even with treatment this can be a fatal disease.
Coinfections add to the dangers, of course, if not also assessed and addressed.
PARASITES [Editing to add - as Gael below reminds us: parasites also must be assessed and adequately addressed. If this is missed, treatment for lyme/TBD will often fail.]
There are many ways to make treatment a bit easier but neither lyme/TBD- nor treatment - is fun. Life is not "normal" but there can still be some enjoyment but all thoughts of what's "normal" really need to be put aside. Nothing is "normal" once one of the most toxic infections known to man takes over. Nothing.
There are some choices, and support measures and, yet, some people still fall victim to lyme, even with the best efforts. And, yes, some get sicker and some die. But it may not necessarily be from the treatment itself.
Yes, it's absolutely true that treatment can be harsh. Again, there are some choices and lots of support methods to help as best possible. Self-care must be excellent but, again, that is no guarantee.
These TBD are violent "stealth" infections and there just is no perfect treatment that fits everyone the same; there is no cure, as of yet.
But many do improve. Some do better in few months, for others it may take years. Many achieve good strong and long-lasting remissions.
One thing for sure: some sort of combined treatment with support is necessary. We can't know the outcome but we still have to do the best we can. We have to pick some sort of plan (and know that will change often), find the best LLMD or LL ND possible - and move forward in courage.
To cover one's eyes assures many bumps and falls in the dark. Pick up a flashlight and select a good map and the best guide. -
[ 12-30-2010, 11:02 AM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
UNDER OUR SKIN - in the documentary and in the bonus footage produced some time after the initial filming, we walk along with some dear people who do not survive yet still inspire us with their strength and courage. We also see many others who manage to overcome lyme on various levels.
SUCCESS STORIES -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Scroll mid-way down this thread to compare and contrast various approaches by holistic LLMDs and LL NDs.
To be clear, I do not advocate just supplements but, for most TBD patients, very specific nutritional supplements are an important support to being able to tolerate treatment. And not all supplements are the same - not by a long shot. Considerations are discussed in depth in many articles and books.
Given what you've said about your fear of pharmaceuticals, you might first get the RIFE book. Still, antibiotics are often an important part of that, at certain times for many.
This takes so much study that it's like being dropped into a post graduate course of scientific study without having completed any prerequisite. It takes tremendous work and energy if you don't have a good doctor. Even then, there's a lot to understand.
But there is no more serious reason to act than facing lyme/TBD. Unchecked, tick-borne infections destroy everything and everyone in their path. Some sort of action is necessary. ------------------------
Topic: How to find an ILADS-educated lyme literate (LL) professionals in these areas:
Naturopathic doctor (ND); Acupuncturist (L. Ac.), a doctor of Oriental Medicine (O.M.D.), or a doctor of Ayurvedic Medicine (D.Ay.), certified herbalists or nutritionists, . . .
. . . Holistic MDs, and also Doctors of Osteopath (DO) and Doctors of Chiropractic (DC), etc.
** Includes many professional links, articles and books on complementary / integrative methods - & RIFE links -- all by LL authors. -
[ 12-29-2010, 02:31 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I am not currently housebound, but there was a day when I was. Just wanted to encourage those of you who are. Hang in there. You can beat this.
Posts: 366 | From Louisville KY. | Registered: Nov 2003
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
I just don't understand why most LLMDs are not treating for parasites!! Dr. K. treats ALL of his patients for parasites/worms first before he goes after the other infections.
Abx alone are just not enough. I was on abx for 4 yrs including 6 mos of IV Rocephin. Antiparasitics and salt/c saved my life and is giving it back to me. I was bedridden and in and out of the hospital (ICU) for many years.
Many people have the Filarial Worm co-infection and are not being treated for it. Burgdorfer found Adult Filarial Worms in the ticks he dissected.
This is what came pouring out of me after I started treating with antiparasitics. I just can't believe That this is being so overlooked.
I continue posting about this because so many here are so sick and not getting the proper treatment. VERY frustrating and heartbreaking to continuosly see this happening.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Ah, PARASITES I'm so glad that Gael continues to remind us. I often forget to add it to my long list of considerations as I just get overwhelmed.
And GiGi and Marnie often remind us about the importance of addressing HEAVY METALS.
And Carol in PA often reminds us of the severe consequences regarding MAGNESIUM depletion (and other minerals, as well).
Parasites, the matter of heavy metals - and mineral balance - must go hand in hand with treatment for any stealth infection.
There are several ways to address parasites. Also be aware of very particular details for heavy metal detox - in has to be done a certain way to be safe. Dr. K's link is in with the holistic MD/ ND collection. There are a few other link there that also address these matters. -
[ 12-30-2010, 12:43 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Even if you are bedridden, I think it's important to try treatments, because when you find the right ones, you're going to do better.
When I thought I had fibromyalgia, I was in bed off and on in the beginning years. Trying so many different things would relieve me temporarily of various symptoms.
At least you know what you have now, and can learn what people try for it.
Phyl, there's other treatments besides antibiotics. People do herbs - check out the Buhner herbs, Zhang herbs, also Cowden protocol.
People do energy treatments like light, magnet and Rife therapy.
Plus many supplements.
Posts: 13171 | From San Francisco | Registered: May 2006
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posted
I was going to reply with my story but Hambone posted it almost word for word.
My only time getting out of the house is to drive maybe a mile or two from the house just to see alittle bit of the world again.
The worst part? Almost all family and friends have turned on me. They just shake their heads and say that there is no such thing as "chronic" lyme disease. They refuse to look at anything I try to show them, because there local family quack doctor(who they all go to see) says that this "lyme" thing is nonsense. My friends (some for as long as 30 years) basically think the same thing. It is just beyond sad.
"I cry every single day ( even at this moment ) for what a pitiful piece of crap my life turned into. I feel like I died, yet I wasn't allowed to go to heaven, and I have to stay here and watch others live their lives." - So absolutely perfectly said.
Jeff
Posts: 233 | From ft. myers, florida | Registered: Apr 2004
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posted
I was nearly bedbound until my LLNP decreased how many antibiotics I was on: she said my body couldn't take it. I'm partially homebound now--go out to doctors appointments, a store trip, or maybe to eat if I'm doing well. But now I can get up and down the stairs more, be around my house, get a few things done. It's nice. Posts: 34 | From Pennsylvania | Registered: Dec 2010
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posted
I'm new to this and glad I found you all. I was house bound beginning in Sept. when had total knee replacement. Thought it was temporary but some dormant TBD was awakened by the stress of the surgery and now on New Year's Eve I am more debilitated than I was the day after the surgery! Muscles wasting away, the constant severe headache and lightheaded brain fog. Nausea. I can walk to my mailbox, but then wiped out. Don't sleep much, not tired but severely weak. One more chance next wk seeing yet another specialist who seems to be lyme aware, but no LLMD. After that I will have to find an LLMD which is just hard because I cannot drive far with no muscle strength and vision beginning to blur. But we gotta do what we gotta do somehow. Just wanted others who may be house bound and alone during the Holiday...you're not alone. Probably a lot of us in this position. It's tough when you use to be always going, and always spending time hiking and loving dogs and the outdoors. It does feel like you've died. It does help a little to know we're really not alone in this vicious TBD!
Posts: 348 | From MA | Registered: Dec 2010
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phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
Thanks to each for your replies. I would love to answer each but don't have the mind or strength. I hate this disease what it has done to not only me but my family. There are times I feel I can't live, can't die all I can do is cry, like that would help. Going back on meds one at a time lower doses but then wonder if that does any good. I have esophagus problems since starting the darn meds. which hasn't been a month then went off during the holidays, started back yesterday and oh the indigestion and discomfort ..Oh well enough of my pity party. God bless,
Posts: 1058 | From VA | Registered: Oct 2010
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
Gael is so right but I would suggest homebound persons to start with very mild parasite cleaning.Clove is just killing the eggs and no big problem. Why not adding this immediately , starting with 1/8 of a capsule up to one capsule.
I was homebound but doing better most of the days.
Posts: 1834 | From US | Registered: Oct 2008
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posted
hi everybody im homebound/bedridden...i hate this so much...n nobody understands...i feel like im alone my husband is starting to act funny because its hard to do for myself...i hurt so bad. I can hardly eat because of the nausea n throwing up...oh God the heartburn! My head always feels light...like im gonna pass out...ringing in my ears...currently i am not taking any meds...i think the dr. Has given up...and im only 26,,,
Posts: 5 | From Suffolk,Va | Registered: Jan 2011
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I've been bedridden for the last three years, and only leave the house to go to doctor's appts. There were times that 3 months went by when I never left the house but now I have so many appts I get out to go to them a lot, but that's it. No trips to the store, or anything else.
Anyone who needs help taking care of themselves should google "pca medicaid waiver" plus the name of their state and see if they can get personal care assistance. Or, at least a homemaker a few hours a week. There are free services available to disabled people; just google even "disability services" and the name of your state and see what is available.
The other thing really weighing on my mind of late, is that it isn't always just Lyme. I worry that we may get so caught up in convincing everyone how REAL Lyme Disease is that we may become closed minded about other medical problems we could have, thereby missing out on other medical treatments that might help us.
For me, getting nothing but sicker and sicker over the last three years just didn't make sense. I'd gotten better the first year, and up and down the next two, but the last three it's been all downhill. The exceptions have been when I treated Bartonella, I did get much better cognitively from Rifampin this past year. But physically, I have been just incapacitated.
I have been diagnosed with two other diseases, most likely caused by Lyme and company, by my LLD. Knowing I have these and getting the right treatment for them is really critical. It makes me worry how many other people might have these or other diseases that Lyme might have caused, but they never get tested or treated, and maybe like me, they just keep getting worse and will never get better.
The two other diseases I have are small fiber neuropathy and myasthenia gravis. The treatment is different than that for Lyme. It's important for me to be treating these. I may get some functioning back that I wouldn't have otherwise.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
Tracy so sorry you are going through all this. I can't even make it to doctors appointments at times. I do not qualify for any assistance but can't afford help and how I need it as I can't do my housework anymore. I try to keep thinks picked up and the laundry and that's it.
This morning I was so weak I couldn't even get a shower. Bed is my home now I do try to keep moving when I can but one minute I might the next too weak to move.
Today is my great gran daughters birthday the first one I have ever missed. Oh, my family needs me I have always been there and doing but no can do anymore and that breaks my heart.
I hate this disease and meds do not seem to be helping...
God Bless,
Posts: 1058 | From VA | Registered: Oct 2010
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lymeladyinNY
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Member # 10235
posted
I used to always be bedridden/homebound. Now I can get out sometimes. I try to get to church and I actually sing in the choir. If I feel bad of course, I don't go - and my fellow sopranos get upset with me!
They only see me on my "good" days. I went to my brother's house on New Year's eve and "seemed" pretty healthy. No one knew that I had to lie in bed and rest all day so that I could go and sit at the party.
I spent all day in bed yesterday because my legs wouldn't work and they ached terribly. I'm wondering if I don't have another virus plus relapsing babs on my hands.
I hate this disease, too. I sobbed in the middle of the night last night after I woke up suddenly and realized I felt horrid. I cry a lot.
Wish crying would wash out the bugs. I'd have been all better years ago if that were possible.
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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i can leave the house (if someone drives me) if i actually HAVE to... i usually have my husband take me on car rides in my pajamas.
but there is no way i can hold down a job, or go out on regular basis.
when i do make myself go out, i usually cry myself to sleep in unbareable pain, and i'm stuck in bed all day the next day.
i am so scared of getting to the point where someone has to bathe or dress me. i feel like i am headed in that direction, and i think i would rather die.
Posts: 442 | From usa | Registered: Oct 2010
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I am at the point where someone has to bathe and dress me. I just have to accept it. One thing I learned when I try to have my hubby help me is, boys can't dress girls. They don't pull your socks up tightly enough, they only pull your pant up in the front, not the back, and overall they just don't really want to be bothered with this!!!
But I have personal care assistants. I hate having to expose my overweight naked bodies but I just have to tell myself this is what they do, and frankly with my PCA on vacation this week, after laying in bed with only one bath in 12 days, I'll take it!!!
I do have two other diseases on top of Lyme that are debilitating, caused by Lyme, so please don't be too discouraged by my situation. This isn't just LYme anymore with me.
I have to just be grateful I can get these services, and that people are willing to come in and help me and the state is paying for it. It's a lot of work to train them and oversee them when you are so sick, but now I delegated most of that to one of them.
I just want to get out of bed and start moving a little. I'm so freaking sick of this bed!!!
I just don't understand how people don't qualify for services if they don't have the money to pay for them....any services? That's really tough. I've been very lucky. I guess all states have different rules. I did have to cash out and spend down my 401K which sucked but what choice did I have, I had to have the help.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
Same here! Well, not quite as bad as some. Some on here are so heartbreaking. I had my first bath last night, since last Tuesday.
I guess I have to be grateful that I can get to the supermartket once a week and then to appts on Wednesday. No house cleaning at all!
Christmas & New Years went by without me even noticing. I am, this week, restarting treatment again after 5 years and hoping that I get better,
if not I will continue to go downhill, as every day is worse than the last.
-------------------- SEREN WEED Posts: 116 | From LOS ANGELES | Registered: May 2005
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
the abx were not working for me and i am doing good on buhner tea
if i don't take it fatigue and pain take over and i go backwards fast---i am able to do much more on days i take it-i have worked up to full strength for a year
i also ration my movement...i refuse to do many things and by using handicap parking, moroized carts , wheelchair , drive ups i do get out and i have a small amont of energy left for exercise that is fun for me and helps me move more.
if i don't get in a 10-20 min walk my pain is way up the next day...the more i am able to move (the right way-not abusing my body ways) the more i can move
i have had lme 30 yrs...i worked and raised a family with it...i have thyroid and adrenal problems from it as well as severe osteo arthtitis that started in my 30s. also cognitve problems made worse by 2 closed head injuries
my point---if i stop and don't force myself out of bed to move...i get worse. (over doing is really bad too-but i really need to force myself up to move and stretch some...or i do get worse)
if you search on here for BUHNER THREAD i posted a handout about the tea from my llmd
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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