posted
I was finally able to secure an appt. with an LLMD on Sept. 1st - hooray! So, until I see her, I am feeling my way through this new world of Lyme and had a few more questions - hoping for some insight.
I am wondering about this horrible, almost debilitating fatigue - what do you do to get through the day? I have 4 little boys home on summer vacation so naps are simply not an option. When does this end?
Before being officially diagnosed three days ago, I was on Ceftin (250mg twice a day) for a sinus infection and then started doxycycline three days ago and am hoping someone will tell me that this will help, even if it takes a few weeks - I just need something to potentially hold onto.
Also wondering if it is common for symptoms to come and go? The fatigue and tinnitus are standard, every day things but my host of other Lyme symptoms come and go in no apparent order.
Also, I have recently started having trouble typing - my fingers just make alot of mistakes where they never did before. Also having some trouble with word recall and am doing things like heading to the pantry to put the milk away instead of the fridge - I catch myself quickly but still - I never did things like this before. Is this a sign that things are getting worse? They have just started since I've been on the antibiotics.
Finally, have you all found that you are more prone to getting sick since you were infected with Lyme? Is this common?
Sadly, I have so much to learn about this disease but am thankful for the support of all of you here and am hopeful that I've landed a gifted LLMD who will help too.
Thanks in advance - you guys are great!
Aimee
Posts: 239 | From Virginia | Registered: Jun 2009
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
Grrr! The fatigue has been my most consistent symptom. Some suggest that it's the last thing to be resolved and I feel that is probably true.
You have to battle through it like everything else. I still work and it's very hard. Sleep doesn't do much good either.
Strangely, I'm less inclined to catch a cold thus far and I work in a public building.
However, my fatigue has not improved much and I'm going on year 3 of this...
I have recently found some gut infections though and I hope that resolving some of them will cause a little energy spike (at least in terms of my iron levels)...
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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posted
You sound just like me. The fatigue is my worst symptom. 6 months into treatment and it almost feels like it is getting worse.
But I am being patient, because from what I hear, it is part of the treatment process.
The problems with word recall & typing are getting better with treatment.
I haven't caught any colds since being on all the abx. Plus my skin has never been clearer.
In the beginning, I felt really overwhelmed with all the reading, but that is how I learned. Keep looking thru this site and you will learn a ton of info.
Even when you think you know a lot, keep researching, you have to take control of your own health. You can follow Dr. B's guidelines on your own, and look for idea's for your treatment here.
Hang in there. Aimee Posts: 379 | From Sydney, Australia | Registered: Nov 2008
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posted
Yes the fatigue! It's horrible. I have two small children as well and it's exausting trying to keep up with them. Just rest when you can and if possible go to bed early.
Several months ago I went through the horrible brain fog. It did get better, but there are still some "foggy" days.
The symptoms of lyme are known to come and go like you describe. It's just part of it.
As far as getting sick more, I'm the opposite. It seems I NEVER get sick with the common stuff like colds/flu. Weird.
posted
I believe that colds and flu are basically an immune system overreaction to a virus.
The overreaction can kill in extreme cases.
We have beaten down immune systems that react too little, which is not a bad thing in *some* cases.
My main symptom is now fatigue too. I managed to treat all the other symptoms with supplements ...
Posts: 330 | From Colorado, USA | Registered: Nov 2008
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Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
I wish I could offer you a suggestion on coping with fatigue. I suffer horribly from it too -- have for years.
Yesterday I almost fell asleep a couple of times during the day I was so exhausted.
Often I feel like I am being smothered by a heavy blanket of tiredness and I can't go on.
I am glad you have an LLMD appointment coming up and I hope you find some relief.
Best of luck.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
A I had a 3 month wait so I know what you feel.
My LLMD sugessted sweet oil for the ears. I also
did Epsom salt soaks. And OJ and salt. Adjusted
to you. Stay away from the caffeine and sugar.
My LLMD said those are my worst enemies. Start
drinking water with fresh lemon and something
like stevia to sweeten is a good alternative.
You can also increase vitamins in
suppliments. I have rarely got sick from anything
other than Lyme related illness since I first got
sick.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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Starfall1969
Frequent Contributor (1K+ posts)
Member # 17353
posted
Yes, the come-and-go symptoms are very common.
Mine tend to do that too, with no apparent rhyme or reason.
Sometimes it seems they all go away and I think wow, I'm actually getting better.
Then wham! Everything comes back, or a new one pops up.
My fatigue isn't as bad as it was last summer when I just laid on the couch for hours on end (and I have 2 little boys too, so that was bad).
But I'm still tired a lot and often don't have a lot of energy for anything but the absolute necessities.
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
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posted
I am one month into treatment and the horrible fatigue is back along with the brain fog and muscle aches.
I hope this means the antibiotics are working and the increase in symptoms indicate bacteria die off.
I am not working but my daughter is home for summer vacation and it has been difficult to rest with a 6 year old running around the house.
Luckily, I try to sneak in a nap when my husband gets home from work. I also find that trying to get at least a half hour of exercise in every other day helps with the fatigue.
Good luck...I am glad you have an appt. coming up in September. In the mean time, hang in there!
JT
Posts: 72 | From Massachusetts | Registered: Feb 2009
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I have been ill over 3 years now, treating for 14 months. The fatigue is one of my worse symptoms. It has improved somewhat, though I still have days when I feel like I was hit by a freight train.
Patience is a very important virtue when you have LD. If you don't have patience, you will learn to have it over time. I am speaking from experience!
Things will get better! Just hang in there!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
It was suggested to me and I also read it in Ken Singleton's book THE LYME SOLOUTION Same-E with acetyl L carniture first thing in the morning on an empty stomach.
It helps a little.
Another helper. - methylcobalamin B-12 shots from a compounded pharmacy (RX). Twice weekly.
Dr. B and Dr. GN recommend NT factor. Do the research.
Decaffeinated hot black tea. Often throughout day.
Fresh lemon juice in water. Often as above.
Activated charcoal pills several hours away from meds and supplements. Helps with yucky feelings.
Treat Lyme and all coinfections. Takes a long time. Perhaps, a year or two. There's no other way but though the protocols. Of course, things won't be quite as bad as they are currently. Stay on abx of one form or another.
Posts: 1954 | From Illinois | Registered: Aug 2007
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posted
Thank you all for your replies, I really appreciate the responses and advice as well as just knowing I have a place here to receive support and encouragement.
I'm having a better day today - was able to get up, run some errands and not feel completely wiped out!
Posts: 239 | From Virginia | Registered: Jun 2009
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Also, your problems with word recall (they call that "word finding problems") and starting to put the milk in the pantry were common problems that I experienced eventually over the 10 years I had lyme undiagnosed.
In your case, the antibiotics could be causing these lyme symptoms to appear. That is one of the ways a person can have a Herxheimer reaction (a herx) when on antibiotic therapy.
So, it could well be a good sign. It could mean that the meds are killing off so many germs that your body is having difficulty clearing them fast enough. Hence, the herx--new lyme symptoms.
My lyme doc said to eat 4 lemons per day and drink lots of water while taking meds. These 2 things are natural detoxifiers. I squeezed the lemons into my water. I drank this all day long.
I rarely had any herx except something very mild. I give the credit to the lemons and water.
Regarding the fatigue, nobody can predict when that will go away. With lyme, you learn to prioritize and only do the most important things each day, since you have limited energy.
So, that's how you deal with it. You accept it and then celebrate when you no longer have it.
Hope this helps.
Posts: 9931 | From Maryland | Registered: Dec 2007
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