posted
I guess I am feeling down and questioning whether I am ever going to get better. I would take improvement (better seems like a pipe dream at this point) now after 3 years of abx and having gone downhill mobility wise
I am usually an optimistic person but this is wearing me down. I have not driven my car in a year, and just trying to get around my house (with a walker) is very difficult. I use a wheelchair when I go out which other than Dr appts is not to often.
I used to be a busy, active, fit person. I have kids and am missing so much.
Is anyone else in a similar situation? Or was at one time?
Posts: 262 | From nj | Registered: Dec 2007
| IP: Logged |
glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Sent you a pm
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
| IP: Logged |
posted
I'm pretty much housebound. I am home alone 90% of the time. My husband works out of state and comes home every other week-end. He's dealing with this stuff too and trying to keep his job so we can keep insurance. I do make myself go get groceries and Dr's appts. I stay exhausted. Some days it's a real killer but I have to do it.
I'm was having a horrible time with herxing and still feel real bad so am concentrating on detoxing. Maybe that is something you should research?? Just a thought. Do you have a pet? I was afraid of the energy one would take to care for but got a little foo-foo dog a year ago and he has made a world of difference for me.
Posts: 383 | From Ar | Registered: May 2007
| IP: Logged |
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I came down to sick to do household chores or go to work in Oct 2001.
Finally dx and started treatment in 2003.
2008 has been the best for me.
I am no longer using a power chair around the apartment. (Had house before coming down sick)
I am able to walk in the forest anywhere from 5 to 30 min.
Can't seem to walk around the apartments. I think it is the quiet of the forest that helps.
Able to go to the movies recently in my reclining power chair. Have not been able to go to the movies in since 2001.
Able to put dishes in dishwasher averaging about once a week on my feet for about 10 min.
Able to do the laundry now...almost weekly. But, not able to put things away yet.
Able to take a stand up shower about ever 3rd day.
Pretty much able to get my shoes on whenever I need to. STill have times I go barefoot or use slippers.
Able to fix my own meals if I keep it very simple.
Able to do my own grocery shopping via the power chair and the senior van to get me there. Need to limit my time at the grocery store and making a list is usually still out.
Adjusted to using check debit card instead of writing checks.
Adjusted to using a tool to pick things up off the ground at home.
Adjusted to being down from about 10 am until after 4.
Lay down on the bed with computer next to the bed and keyboard on my lap.
Not able to read a novel yet.
Able to have short conversations with some people.
I most likely will think of more later.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
| IP: Logged |
feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
I am. But not because of mobiity issues. I ambulate fine. It is my brain and headaches/pressure, lightheadedness that has me homebound.
I have not driven in a year and am dependent on family for many needs.
Need to talk? PM me anytime
Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
| IP: Logged |
heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
yes, i was 90 percent bedbound at my sickest, mostly due to severe neuro issues, as well as weakness. i'm still sick, but no longer bed or homebound. it will get better, i promise. i agree that you may need to explore different tactics if abx aren't working for you; focusing on detox is a great suggestion. never give up hope.
posted
thank you all for your answers and support. I think my decline is due to detox issues. Even though I haven't had the test to determine detox inability, I would guess that is an issue for me.
For detox I use my sauna 2-3x per week but would like to do it more but it is time consuming and I have to rely on help. The fact that I smell so bad when I get out of the sauna to me is an indicator that something toxic is coming out.
I also do burbur and parsley. I take some other supplements that support the liver like milk thistle and NAC.
I am going to add coffee enemas. Any other detox ideas?
I need to get through the holidays and hope the new year is going to bring some positive changes.
Posts: 262 | From nj | Registered: Dec 2007
| IP: Logged |
oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Contact [email protected]. Do a search on here for her moniiker boejr. or beojr I can't remember. She has a home hyperbaric chamber in New Jersey and treats lymies at low cost (she is an RN with lyme who bought the chamber originally to treat herself).
Hyperbaric will really help you in all ways. Ask her about it.
Posts: 2276 | From united states | Registered: Jun 2004
| IP: Logged |
posted
hi NJgirl, I share your circumstances. It has become very isolating, lonely, and scarey.
I became unable to work 3 years ago. Since then my life has substantially dissolved. Other than doctor appts/treatment I have little other social contact....other than with less than a small handful of people (patients) I periodically stay in touch with online.
Once you are unable to work your world becomes progressively smaller and more isolated. The loss or threat of loss of ability to maintain indepdendent living capbility is frightening. I think only those who have lived this part of it can possibly understand what I am saying.
If you need to correspond with someone please feel free to PM. My frequent long lasting flare periods can limit my ability to be timely in responses.
Just wanted you to know that you are not alone.
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
| IP: Logged |
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
nj girl. i too am supposed to be doing the sauna but have yet to incorporate it into my routine.
i just don't think I could handle driving to the place with the sauna and sitting in the sauna and being able to walk out of there or function enough to use my power chair to get out of there.
i had an ion foot spa detox donated to me. They recently came up with a at home product.
I like it and think it is helping.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
| IP: Logged |
Feel free to contact me anytime. It sounds like you may be having a hard time detoxing. There are many methods, you must find the one that works for you.
Can you tell me if you have been diagnosed with co infections? Have you checks for metals, mycoplasma and virals?
With regards to the foot baths... Please make sure that you are purchasing from a reputable company. I was going to invest in a brand with a freind.
She decided that after having everyone in the family try the foot bath they all had the same yellow dark water. Curious she took it apart! It turned out that the coils where rusted! She did send it back but was not very comforting to say the least...
Blessings,
Julia
BTW, Thank you Oxybabe : ) for the kind words
-------------------- Please consult your LLMD before making any changes to your treatment regimen. Posts: 641 | From NJ, USA | Registered: Oct 2001
| IP: Logged |
posted
kam - I have a sauna at home or else I'd never be able to do it. I am like jello when it's done. Since I smell bad(very!)I think it works. I used to work out alot at the gym and hardly sweated let alone smelled. I think it's the toxins.
oxygenbabe - I did talk to Julia over a year ago. I do plan to do HBOT with her at some point. I need to be able to drive there which I can't now. I am sure I have Babesia and I have read mixed things about doing HBOT with this.
jam - I am in a similar situation. Maybe we can talk sometime. Feel free to PM me too.
Deb - I am going to ask my LLMD about the salt/c protocol. I have low blood pressure and I crave salt.
Anyone else who responded and I didn't mention I appreciate your responses.
Posts: 262 | From nj | Registered: Dec 2007
| IP: Logged |
I have spoken to you but it was quite awhile ago. I am curious as to your opinion of doing HBOT with Babesia. I will start a new thread so others will see the info who may not be reading this one.
Posts: 262 | From nj | Registered: Dec 2007
| IP: Logged |
oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
NJgirl, babesia is epidemic, in fact more common in ticks in certain parts of Connecticut than borrelia (lyme). Most chronic lymies have it and many have benefitted from hbot, including me.
I wouldn't worry too much about babesia. Try it and see if you herx. Can a neighbor or family member drive you once or twice to see how you do?
Bedbound and homebound is no fun. Imagine if hbot worked for you--and changed your life.
Posts: 2276 | From united states | Registered: Jun 2004
| IP: Logged |
posted
NJgirl, what kind of sauna are you using, infared or steam?
I have been thinking about getting an infared sauna for my home. Going to ask my LLMD for thoughts about it. I am too weak to seek services away from my house.
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
| IP: Logged |
I was once also VERY active and always doing something. I used to Rollerblade with my kids, go for long walks, ride my horses, 4-weeling, jetsking, love boating and camping, etc..... I could go on and on!!!!
Never in my wildest dreams did I ever think that anything could do this to my body and totally change my life!!!!!
I have always been (and still am) very strong willed, a fighter and even the first 6yrs. of being sick, I was still saying to myself....There is no way that I'll let this take over my life-----mind over matter thinking.
What a rude awakening when I could no longer get out of bed or even hold my head up. I KNOW IT'S SO FRUSTERATING AND HARD!!!
I have been bed-ridden and house bound off and on for a long time now. I have not been able to drive in over 2 years, which makes me sooooo mad as I am a very independant person!!! Aaarhhgg!! While going through treatment, I could only get out of bed to go to the bathroom and would most always have to wait for help.
After a pretty good Stroke I had to stop tx for a while. Still house-bound and can only do some chores on some days, however this is only when I take Provigil. I've even gone to the lake once this year and out to dinner 2 or 3 times, but again only with the help of many meds. and paying the price for weeks afterwards!
My LLMD just now feels that I can start IV tx again very, very slowly and I'm SCARED TO DEATH!!! As right now I can at least sit on the couch for short periods, but I'm afraid it will be back in the bed 24/7 when I start.
I just wanted you to know, as many others have said too that I really know how you feel. Most days, I have corn chips for dinner!!!! I too have a walker and an elec. wheelchair.
We should all start an IM acct. with yahoo, pick a time and everyone sign in and chat with each other!!!! Help keep each others sprits up!
BTW----You mentioned that your BP is low and you crave salt?????!!!!! Have you had your endocrine sys. checked!!!????? Especially your Adrenals????
If not, PLEASE DO!!!!~!!
Posts: 351 | From Georgia | Registered: Feb 2008
| IP: Logged |
luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
****NOW HEAR THIS*****
Sorry for the dramatic headline, but I am coming in on your thread late in the game and I don't want you to miss what I have to say.
My symptoms began 8/05. 3 mths later, I had to quit my job and became housebound. By 01/06, I was diagnosed Rheumatoid Arthritis. This is after 2 lyme diagnosis and 6 mths of lyme treatment (mostly homeopathic, but also Ketek and Flagyl)
At the time of my diagnosis, I was inflammed in every joint of my body except my spine and hips. I couldn't open my mouth wide, get up or down from bed, chairs, tub. I could not be left alone because I could not open door handles and sometimes got trapped behind closed doors. I couldn't open my own pill or water bottles. I read at this time that if RA affects more than 30 joints I had a 75% chance of dying within the next 5 yrs. I sure felt like I could die.
I researched RA and found many possible causes. Lyme, of course, is a big one. So is Leaky Gut Syndrome. I tried a vegan diet for 2 weeks and EXPERIENCED A 50% REDUCTION IN MY SWELLING AND PAIN.
Turns out vegetables, especially the cruciferous ones, help your body produce glutathione. Glutathione is a major detoxifier. Studies have found that elderly people who are healthy have high levels of glutathione and sick people of any age have low levels. So just by eating a vegan diet, I improved the inflammation in my body significantly.
I went in search of a doctor who could help me with toxicity, leaky gut. Test me for heavy metal toxicity, etc.
This temporarily took me away from specific lyme treatment, but I found a wonderfully competent doctor who understood toxicity and its impact on our body. He worked with me to eliminate my inflammation, heal my gut and build up my body. He saved my life.
I began working with him in 04/06. I had returned to work 03/06. I was still in a lot of pain but the vegan diet was keeping me up and running. I had stopped all homeopathic treatment which I beleive was just too effective and I could not clear the die off. I had begun minocycline at very low doses 100mg MWF. This is a rheumatoid treatment aimed at mycoplasmas. My rheumatologist did not believe in it, but he was willing to prescribe it for me.
The CAM doctor began giving me IVs of glutathione, lipostabil, myers cocktails. He tested and identified food allergies which were causing inflammation in my gut. At this point, I was able to add some meat back into my diet and I knew which foods I had to avoid. Food had a great impact on my inflammation and hence my pain.
This doctor believed that herxing was the body's signal to slow down. I totally agree with DebAz that some of us must go slow in attacking lyme and coinfections because we are so deficient in our abilities to detox.
After one year with the doctor, the rheumatologist declared me nearly dormant. That was a happy day for me.
At this same time, I found a rheumatologist who is also ILADS LLMD. I am now working with her, and she uses meds, but she also practices CAM medicine.
This doctor ran the DetoxiGenome test and I am horribly deficient in my ability to produce glutathione on my own. So, I eat lots of cruciferous veggies, I take NAC (I can't do whey protein because I have a diary protein allergy)and I use glutathione suppositories which I am sure I will use the rest of my life.
I do test positive for babesia, mycoplasmas, CPN, EBV, H.Pylori. So we go after the bugs too but it is like this. A little killing. A lot of detoxing.
It only took me 6 mths with the first CAM doctor to be doing all the things I did before I was sick. Horses are what I "luvs2ride" and you can't even work around them if your joints are inflammed, much less ride them.
I am 3 yrs into my illness and for the last 2 yrs, have enjoyed a normal life. The last year has been pretty much painfree. I actually feel stronger than before I was sick. At 53, that is quite a feat.
BTW, those with mental issues, that is inflammation of the brain and the same detoxing strategies apply.
Beware of detoxing methods on your own. My doctor has forbid me to use a sauna up til now because she says it could land me in the ER or a psych ward, depending on where the toxins land once mobilized.
My detoxing has had to go super slow due to my poor ability to eliminate the toxins. When I was at my sickest, an Epsom Salt bath would cause immeasurable pain. Today I can soak just fine and the doctor thinks a sauna is in my near future.
I once tried zeolite product recommended here and it blew my knee up the size of a basketball. My doctor was very upset and said "run it by me first please".
My strongest advice to all of you who are housebound is to find a CAM doctor well trained in detox. You can work with them while working with your LLMD.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
| IP: Logged |
jamescase20
Unregistered
posted
Yah, I have not worked in about 1 yr now...since I started to TX ,I was probley even sicker then, but worked anyway.
I am clearly getting better...but I am not ready for work.
IP: Logged |
posted
jam - my sauna is far infared. It really wipes me out. Luvs may be right that it is to much but it seems to be the best detoxifier.
The person who talked about Lipostabile (Luvs?) I wonder if you are talking about Dr Kanes protocol? I was doing that but not seeing results and while I think the Glithione is beneficial it was so expensive I could not afford to continue.
Luvs - thank you for your experience with detoxing. You make some very good points. Would your CAM Dr be in the NJ area?
scared & zil - it sounds like our situations are similar. I hope this thread has been helpful to you too. Maybe we should start a support thread in general for disabled/housebound to encourage each other?
Posts: 262 | From nj | Registered: Dec 2007
| IP: Logged |
oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
NJgirl--I haven't tried it yet but someone I know bought glutathione powder (pure) and puts I think 1/2 tsp (not sure the amount, I forget) in pure water and inserts it rectally. Her doc who has lyme, and she herself has lyme, recommended it. She said it really makes a difference. I bought the powder (expensive--$80 for a bottle) and plan to do it but have to buy some syringes on amazon.com. These would be needle-less syringes of course! You're just trying to insert it rectally where the big veins there will absorb it instantly.
I recommend trying 2-3 sessions at Julia's somehow. Even if you get a car service. When my bf can't drive me to my Long Island doc I have a wonderful gal drive me in her own car. I put an ad on craigslist to find her. I offered $60 for the roundtrip, which usually is about 3-4 hours. I also pay for gas and tolls so it comes to a total of $80. She always arrives on time. She is a single mother with a lopsided schedule so she can't have a regular job so this is perfect for her too. I don't use her every week, but she's always there when I need her. So consider putting an ad on craigslist NJ for that. You will get a lot of answers. People are hurting for $$ these days.
Posts: 2276 | From united states | Registered: Jun 2004
| IP: Logged |
luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
nj,
I'm afraid not. He is in N.C. The 2 websites I link in my first post have a find a physician feature that should help you find a good doctor in your area.
Detox is really important but dangerous too. I totally sympathyze about the cost. It sure isn't cheap to get well.
There are slower detox methods that eventually get the same results. But, for me, glutathione is essential. A gene test actually reveals I am very poor at producing my own glutathione. So the cost for me is just what I simply must pay.
My doctor has found and is providing me now with glutathione suppositories which are half the cost and 10 times the convenience. They do seem to be really helping too. I am spending $60. a month and take one every other day.
I'm sure I will take them the rest of my life.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
| IP: Logged |
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I was disabled to the point that I had to quit my job. Have not worked in over 2 years now. I could barely function due to severe fatigue, pain and brain fog. Over the last 7 months I have improved about 30%. I don't feel able to return to work yet, but I am able to do more now, and can get out of the house.
I think a very large majority of Lymies are disabled to some extent.
Posts: 4035 | From Mississippi | Registered: Jul 2008
| IP: Logged |
posted
I'm so sorry your going through this. I'm disabled too and have been since 1986.
My illness came on very severe. I know the date, April 16th 1986 because I ended up in the ER and then the hospital with what felt like the worst flu I had ever had.
I was fine the day before, and bedridden the next. They thought at first that I had viral meningitis. Spinal tape was negative.
Been in a wheelchair since and very, very sick. I was 26 years old, very healthy, very active before I got sick. I had three small kids at the time. Nothing in my life could have ever prepared me for this!!
Was just diagnosed 3 years a go with Lyme, and Bart this spring. I have been really sick on the antibiotics and thought for awhile that I wasn't going to be able to handle it. But I went slow and am just now, after three and a half years starting to feel a little better.
I am along way from cured but I do feel some better. So I think and hope that maybe it just takes longer for some of us.
-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
| IP: Logged |
posted
I had no idea so many were/are disabled from this disease. I am sorry to hear it but know now I am not alone. Thank you all for sharing your stories.
We must keep at it and hope for healing in 2009.
Posts: 262 | From nj | Registered: Dec 2007
| IP: Logged |
First thank you Luvs2ride for the good advice!! I found it very helpful also as I am unable to detox, Severe Maltutrition, etc....
NJ, I went on a mission to find some success stories and I found some on You Tube. I know that, I think it's Ms. BettyG has a collection of videos here, but I thought I would try to paste a few in hopes that it may help.
I hope that I did this right so you can view them!!?? As your watching you will see other videos. The last one have a few that I felt had a lot of good info. in them.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[hi]](graemlins/hi.gif)
![[group hug]](graemlins/grouphug.gif)
Printer-friendly view of this topic