posted
hi, does anyone know what to do for the intense fatigue that accompanies lyme disease. i would like to feel good for a little while during any given day. any thoughts would be appreciated. romy
Posts: 12 | From oak ridge, nj | Registered: Aug 2004
| IP: Logged |
rosesisland2000
Frequent Contributor (5K+ posts)
Member # 2001
posted
Don't know your story, but, I and thousands here before you have dealt with extreme fatigue. Fatigue and Pain are the two top complaints of his hundreds of LD patients.
I noticed that this is your second post...since I didn't see the first one, don't know if you have been welcomed here and given links for new members or not.
So, Welcome to LymeNet and please read and study the following links that will help educate you so you can be more active on your road to wellness.
Could use a little more information, please.
Like, how long have you had LD? Is it a recent infection? Are you being seen by a real Lyme Literate Medical Doctor (LLMD)? They are few and far between. For most doctors do not know, even if they say that they know how to treat LD. You will be backing up on your road to wellness if you do not see one.
Anyway...here are the most important links on LymeNet for someone as yourself.
And, if you don't want to wait for answers as it has been soooo busy with new folks here lately and hard for the regulars to get around to all the posts, you may want to do a search yourself.
posted
Hi Rosemary, i want to thank you so much for your links, i have to spend some time there. well, in answer to your kind questions, i am brand new to lyme disease. i think i've had it for about a year based on how i feel. i'm very very tired. a year ago i started going to the doctor and have been to about 5 of them. they thought thyroid, adrenals, exhaustion, stress, didn't know etc. no one had the answer until about 5 weeks ago i had a bulls eye under my arm. i had a girl at work look at it and she said lyme disease. i went to an infectious disease doctor that day and she concurred. she put me on 3 weeks of doxy and off i went. after two wks. on the antibiotics i felt like myself again. i hadn't felt like that in an entire year. but after being off the doxy after 4 days, it was the same old thing, tired, knees, shoulders aching as can be, fingers swollen and hurt, sooooo tired again, no energy, my eyesight is very bad in the last year and brain fog indeed. i do have a phone consult with dr. zhang tomorrow in nyc. i will write back after we speak. i haven't had any blood tests yet, i had 40 weeks of IV treatments for being chemically sensitive and i'm a bear to get blood from. i am sure someone is gonna want it soon. yesterday i posted under the and another area on this site for a lyme disease doctor. i haven't checked yet, but if i keep reading, i'm sure someone has already asked the question. the best for me is that i found this website because i know NOTHING about lyme disease. i do live in the country, in the woods but that's only because the environmental doctor said we should move cuz i was in the suburbs and all the smells were bad for chemical sensitivities that i have. had a tick on my shoulder last year, picked him off, tossed him and they put me on doxy for 2 weeks. again, this is new and i have lots 2 learn. thanks for listening and i have lots of reading to do. with kind regards, romy
quote:Originally posted by rosesisland2000: Don't know your story, but, I and thousands here before you have dealt with extreme fatigue. Fatigue and Pain are the two top complaints of his hundreds of LD patients.
I noticed that this is your second post...since I didn't see the first one, don't know if you have been welcomed here and given links for new members or not.
So, Welcome to LymeNet and please read and study the following links that will help educate you so you can be more active on your road to wellness.
Could use a little more information, please.
Like, how long have you had LD? Is it a recent infection? Are you being seen by a real Lyme Literate Medical Doctor (LLMD)? They are few and far between. For most doctors do not know, even if they say that they know how to treat LD. You will be backing up on your road to wellness if you do not see one.
Anyway...here are the most important links on LymeNet for someone as yourself.
And, if you don't want to wait for answers as it has been soooo busy with new folks here lately and hard for the regulars to get around to all the posts, you may want to do a search yourself.
Intense fatigue can be caused by the co-infection Babesia too which requires different treatment (anti malarials).
Are you seeing a Lyme literate medical doc who can test you for co-infections like Babesia?
I am not sure where you are based but you can post in 'Seeking a Doctor' to get recommendations. I have heard a few people say Dr Zhangs stuff did now work for them.
Dr B is excellent - are you near NY? BW Emma
Posts: 37 | From Whitehead, Northern Ireland | Registered: Feb 2009
| IP: Logged |
i guess i'm so desperate right now, like so many. and no i don't have a lyme doctor yet. i did post a message on the "find a doctor" area and one young lady answered me so i emailed her. i did go to an infectious disease doctor, but she was into 3 weeks antibiotics and that's it.
the big problem is to try and fake it at work. i'm chemically sensitive and had 40 weeks of iv treatment to try and pull the chemicals out of my body and i wear a respirator cuz of colognes/perfumes etc. my boss gave me an office which i'm MOST grateful for. i took the doxy for 3 weeks and felt GREAT, but 4 days after stopping the antibiotics it's totally back (all symptoms that is) so, i won't say a word to anyone about it because so many concessions have been made for the chemicals. but i fall asleep at work occassionally.
again, i'm so desperate right now.
thanks alot for listening. romy
Posts: 12 | From oak ridge, nj | Registered: Aug 2004
| IP: Logged |
posted
A couple things I do for fatigue, that may or may not help you:
Two Ginsana in the morning. Ginsing is a natural energy booster.
Vitamin B-Complex; B vitamins should always be taken in the morning with breakfast for energy.
I take my multiple vitamin at bedtime to allow the body to absorb the vitamins during sleep.
Also, I'm accustomed to taking my shower in the morning and find that I can't really wake up until I've showered.
Sometimes, just limiting the length of a nap helps. When I feel the fatigue pulling my eyelids closed, I look at the clock and give myself just 30 minutes to rest and then get up. That should be enough.
Watch your diet too. Don't indulge in junk. Eat fresh fruit and veggies mainly; and good protein.
Move as much as you can, but not to the point of pain. Just do what you can and remember you are very ill; give yourself a break.
I think the mental side of this disease is as tough to overcome as the physical aspect of it. I try to do SOMETHING everyday that brings me joy...whatever interests me at the time. After all, we are fighting for our lives and what are we fighting for if not to get some joy out of it?
--Nancy
Posts: 963 | From N. Olmsted, OH USA | Registered: Jan 2003
| IP: Logged |
beachcomber
Frequent Contributor (1K+ posts)
Member # 5320
posted
Nancy's tips are all good. I'll add that 20 minutes of yoga or stretching in late afternoon or evening gives me a second wind.
posted
thanks so much, you're both the best. i wrote everything down, will buy what i need to and get started today, as a matter of fact, right now while i have some energy. i cannot tell you how relieved i am to have others that understand, i think that's half the battle. it's no fun feeling alone and plus i have alot to learn.
thankyou romy
Posts: 12 | From oak ridge, nj | Registered: Aug 2004
| IP: Logged |
TheCrimeOfLyme
Frequent Contributor (1K+ posts)
Member # 4019
posted
Romy,
I dont know your full story or when your chemical sensitivities occured, but bartonella is very common to cause this as is lyme. I have it with my lyme and it sucks. So is yeast a major major culprit of this.
You could have got bitten in the city, lyme knows NO boundaries.
Glad to see you are seeing a LLMD.
Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
| IP: Logged |
posted
Don't want you getting too overwhelmed with suggestions, but I battled the horrible lyme fatigue and spaciness with gingko biloba- there in a brand called "ginkoba" that seemed to work well. Garlic may have helped energy at times, but was unpredictable - sometimes seemed like it caused a "herx". And I know it's a no-no according to some, but I found green tea indispesable for helping me keep going through all those fog-filled days. As Suki said, do consider babesia (discuss this with the good doc when you find one) If that's what it is, for me it was no easy fix; and it may get worse before it gets better (as with alot of what comes with these tick diseases...). I hope you get well as soon as possible! DaveS
ps- for babesia ("babs" for short, here on lymenet) I took artimesia anua (a chinese herbal treatment for malaria) and its extract, artimisinin, which I obtained from 'allergy research' , in addition to the standard pharmaceutical atovaquone combi called 'malarone'. (another standard pharm brand (I think it's pure atovaquone) has brand name 'mepron'; they usually give you azithromycin in combination with that)
Posts: 4567 | From ithaca, NY, usa | Registered: Nov 2000
| IP: Logged |
liz28
Unregistered
posted
Some other helpful supplements are CoQ10 (can't live without it), cordyceps, coptis if you can find it, phosphatidylcholine, and flaxseed oil.
IP: Logged |
WildCondor
Unregistered
posted
make sure you are checked for all co-infections, and yeast, make sure you sleep alot, supplement wise, cordymax from pharmanex is great 2 caps 3x per day, methylcobalamin B12 injections ROCK if you do them daily before 9 am...over time your energy goes UP! Have your hormone levels checked andmake sure you are not low thyroid, adrenal etc etc. B complex 100 mg per day also helps as can siberian ginseng. :-)
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!
Printer-friendly view of this topic