posted
i am new on here and new at all of this,but reading what alot of you write and talk about it seems like you all have been going thru this for years?? is it because you had it along time before getting a dx?
i had lyme 2 months before getting a dx, did 5 wks of doxy, 2 wks of amoxy and now doing 2 wks of iv rocephin. should i recover good since i caught it early????????
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HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
I've had Lyme 7 years and am on my 8th week of antibiotics. Pain in my hands left in 5th week of antobiotics.
Just read all the newbie stuff so you know you are getting the correct treatment.
So you tested positive?
If you have the correct treatment you should be fine since you;ve caught it early.
Did you have symptoms?
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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loverell
Unregistered
posted
i tested postive on the wb with only one band and negative on the elisa. i have alot of various symptons but the one that bothers me the most is the muscle pain. how do i know what the right treatment is? i have changed so many times in the past 2 months, because i feel like its not working?
HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
No just found out I have it. I'm on my 8th week of biaxin. Now my LLMD added plaguenil to the reigimen.
I don't eat sugar or carbs for fear of bodily yeast infection. This will make you feel worse.
Also go to the health food store and get super duper multi vitamins, probiotics, and enteric coated acidophilus pills.
You need to replenish your body with good bacteria again.
What antibiotic are you on and what dose?
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
Ok I reread your original post "lyme fog". Sounds like you are being very aggressive with the antibiotics.
But do you do the other stuff to take care of your body?
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
I'm sure treepatrol, lyme too, or tincup will give you all the newbie links. Or do a search "NEWBIE LINKS"
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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loverell
Unregistered
posted
i am doing iv rocephin for 2 wks.. dont know what to after that, maybe back to amoxy? what is probiotics???
posted
Hey there, loverell! WElcome to lymenet!! Get some probiotics ... quick! If you don't, you'll be even more miserable.
Acidophilus is a probiotic. You take it to replenish the good bacteria that the abx are killing off.
One reason you are not feeling well is that you are likely herxing. That means the abx are killing the spirochetes, causing them to throw off toxins as they die.
It's the toxins that are making you feel lousy. It can make pain worse, cause new symptoms to crop up....all kinds of things.
Yes, many of us are long termers because it was not caught early. Yours has been caught relatively early...but DON'T stop the meds until you are symptom FREE for at least 2 months.
------------------ oops! Lymetutu
[This message has been edited by Lymetoo (edited 13 March 2005).]
robi
Frequent Contributor (1K+ posts)
Member # 5547
posted
You really need to find an LLMD. Please post in "seeking a Dr." on this board. I have heard there are a few in South Florida.
If you have a Dr. that you can work with, go to ILADS.org and print out Burascano's guidelines and take to the Dr.
You may be able to get your current Dr. to consult with an LLMD. If you can make a trip to see the LLMD a few times a year, then your Dr. and the LLMD can consult.
You really need to have an LLMD involved. Other Drs. (including rheumotolgists, immunologits, infectious disease specialists, and so on) are only going to treat you with the cook book approach to Lyme. This type of treatment will most likely be insufficient. You have to get to an LLMD.
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Loverell, nobody can give a definite answer to your question. Even the wisest of LLMDs couldn't answer that question now.
It all depends on so many things. How your immune system is functioning. Did the bug that bite you leave more than just lyme? Did it leave co-infections, parasites, viruses,etc.
I'd say your best bet is to get to a real LLMD now. Keep doing your homework on what you are dealing with. Don't panic yet, just find a doctor that knows vector borne illnesses.
Pam
Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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posted
Hey, just so you know I'm someone who was diagnosed about 6 weeks after apparently being bitten. That was last summer.
I felt alot better after 8 weeks of doxy but decided to see a LLMD anyway. His program put me on a series of different abx. Each one seemed to cause me to herx a little but I've also gotten better with each one.
I'm still on Flagyl and waiting to see what happens over the course of the next few weeks.
But in the meantime, I participated in a four hour advanced yoga workshop a few weeks ago and just skied all day on Friday for the first time this season.
The only reprecussions from each of these physical challenges were that I had sore muscles... but I was sore the way anyone would have sore muscles from overdoing it-not Lyme sore the way I was after just a little exercise a few months ago.
As soon as I felt up to it a couple of months ago I started walking a mile or so a day plus I do about 45 minutes of yoga every day (I've been a yogi for a long time but I couldn't do my practice when I got sick last summer).
I've been battling yeast and stomach problems that result from the abx. but with diet and supplements I've gotten a handle on those issues too.
Now, I'm just looking forward to being done.
:-)
Oh yes, my LLMD says I should expect to be "cured"
So, I hope that gives you something good to look forward too.
------------------ Wishing you fast healing and good health!
Posts: 109 | From Colorado | Registered: Aug 2004
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beachcomber
Frequent Contributor (1K+ posts)
Member # 5320
posted
I don't agree that you have to get to an LLMD. I think there are some very good non-LLMDs who follow the ILADS Guidelines who can treat properly. You just need to do your homework and research the possibilities so that you and your MD can have an informed discourse about this disease and your treatment.
I had no luck with getting appointments or insurance coverage with the local LLMDs. I see an Infectious Disease MD who treats many a Lyme patient aggresively and takes insurance.
There is no sure-fire cure-all for LD. Not even the LLMDs have the answers. It is treated on an individual basis. Your treatment protocol sounds fairly normal for one who has caught this early. In 9 weeks you should be able to tell if it really was caught early enough. If not, don't get that PICC line pulled too soon. Give the Rocephin a chance to work, if you still have symptoms. Keep an open dialogue with your MD and keep a daily journal of symptoms.
HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
Health food store in the fridge section try to get one that is ENTERIC COATED to survive stomache acid. Get a heavy duty multi vitamin also.
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
You should take 2-3 acidophillus capsules 3 times a day, on an empty stomach, at least 2 hours away from food or antibiotics.
So, for example, 1. first thing when you get out of bed 2. around 3 pm 3. just before bedtime
There are zillions of brands out there - pick on that has numerous different strains of flora. If you've never taken it, I'd stay away from ones that contain FOS (will say on the label) as it may be hard to digest.
------------------ Julie G. ___________ lymeinhell
Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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loverell
Unregistered
posted
Thank you all so much, you all have done more for me in the past couple of days than my doctor has in months!!!!!!!!!
i greatly appreciate all the help from everyone... i am really glad i fixed my computer, with everyone on this wonderfull site i have alot more hope of getting thru this easier.........
posted
Welcome Loverell, I began my treatment 1 month after the tick bite. I've been on oral abx, doxycycline first and now a lot of tetracycline. I'm now in my 8th month of treatment.
I am improving a lot since I got an LLMD and like Needleseye just had my first days of skiing this season. Two months ago I could barely lift my skis never mind use them. I walk a lot now and am getting back in shape.
Recovery is unpredictable and I have good days and bad days and occaisionally now almost great days. If I don't get enough sleep I feel much worse.
Thanks to all I learned here on Lymenet I started the anti yeast diet early on. I found the food lists helpful at www.wholeapproach.com. I also take probiotics. I like Primal Defense which I order from www.iherb.com. I used to use the powder but recently switched to the caplets which are more convenient. I take one twice a day.
Right now my food/drugs/probiotic schedule is to take the antibiotics with lots of water on a empty stomach when I wake up. Breakfast 30 minutes later (usually meat and vegetables) Around 10:30 or 11:00 probiotics. I only eat dairy at lunchtime since calcium interferes with the antibiotics. No food between 4 & 6, antibiotics at 6:00 or 7:00 depending on dinner plans, dinner 30 minutes after antibiotics. At bedtime probiotics and milk thistle. I drink lots of water and have given up coffee and almost all alcohol.
I had a different food schedule when I was on Doxycycline since I had to take that with a full meal. It helps me to have a plan worked out. Sticking to my health plan is my top priority.
This plan seems to be working since my stomach is OK and I don't have a yeast problem. I'm really strict with the diet since it makes me feel so much better. No sugar, no fruit, no flour, no grains (except very occasional white rice)no soy, all meat, eggs, cheese and vegetables organically raised, hormone and antibiotic free. Low mercury fish only. I eat a lot of vegetables and more meat & nuts than before. I've gotten good food info and products at www.mercola.com. Check it out.
Take the yeast thing seriously sooner rather than later.
My LLMD says I will recover. hatsnscarfs
[This message has been edited by hatsnscarfs (edited 13 March 2005).]
Diagonosed 10 weeks ago, Infectious Disease Doc says I've had it for about 6 months. He put me on IV Rocephin for 4 weeks and pronouced me cured. 2 weeks afterwards later and the knee pain and swelling, nausea, headaches, etc are all back. Now I'm getting worried- especially after scanning some of your posts. What is an LLMD and where can I get Rocephin cheap. My insurance company won't pay for any more and the outpatient nursing company wants $1050 a week for 7 doses of R. Doc put me on Amoxcillin for 30 days-but it's not doing jack. I felt great on the Rocephin. Any advice? thanks, RJH
Posts: 4 | From Arlington, VA USA | Registered: Mar 2005
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