Hello, I have a question. I have the doxy and have not started taking it yet. I am scared. I promised myself that I would start today. Can some neuros answer my questions?
1. Should I start it if I have presented with new neuro symptoms prior? 2. Have any of you experience lower trunk tightness? NOT ABOUT DRUG, just symptom? 3. If I get a herx, do I stop taking it? 4. How do I tell what is a herx and what is rather a relapse or flare up?
Please advise.
Posted by mlkeen (Member # 1260) on :
Some people are very nervious to start abx. I couldn't wait. Doxy was the first drug I took. The big thing with doxy is not to eat dairy products within two hours of taking doxy and stay out of the sun or cover up very well. Just the heat from the sun made me itch and burn.
My tummy was fine and I felt better within days. My herxing was mild. I need to discuss when or if you are to stop drugs during a herx. Drink plenty of spring or filtered water and do gentle exercise several times a day. Just a few minutes at a time if you hurt. You need to pump the toxins out of your tissue.
Some doctors have patients take a low dose for a few days to get used to the drug. You can ask your doctor about this?
Mel
Posted by Aniek (Member # 5374) on :
If you have questions about symptoms, contact your doctor. But I don't see why new symptoms would make you want to wait. If anything, they suggest to me that you would want to start treatment.
There is no definite way to know if a herx is a herx. But a herx usually starts 24-72 hours after starting a new treatment. So that's one way to know.
A herx is a sign that the treatment is working and killing what it is supposed to kill. So unless it is so bad you cannot tolerate the herx, you want to continue with the treatment. Stopping can cause resistance to the abx.
If it gets extremely bad, then contact your doctor. Your doctor can help by prescribing something to help treat the symptoms so you can handle the herx or will tell you if you should stop the abx.
Posted by NP40 (Member # 6711) on :
Doxy is often the first med given and with good reason. Some contract lyme and erlichiosis initially. Doxy will treat both. In some rare instances erlichiosis can be fatal.
Hence,the doxy as first line of defense and treatment.
Posted by Annthenurse (Member # 5118) on :
Doxy was the first drug I took. I have never been able to clearly recognize a herx. However, my husband had a Herx from Hell when he was on Tequin IV. He had rather severe neurological symptoms. He had been on several antibiotics before he started Tequin. After two weeks of herxing and being confused, I called our LLMD. He suggested I cut his dose in half until his symptoms subsided. I did as he suggested. The herx lasted about a month. That was the turning point in his recovery. We are both still on antibiotics and occasionally I see some signs of a herx for him. However, I am beginning to believe it is time for us to consider stopping antibiotics. It has been a very long haul. Ann
Posted by seibertneurolyme (Member # 6416) on :
Since you are at the start of your treatment, now is a good time to start a journal.
Just a simple notebook listing med doses and any major changes in supplements. Also list any new symptoms or major improvements in symptoms.
Some people rate each day on a scale of 1 -10.
Whatever works for you. The important thing is to take notes so you can see if meds/supplements are helping.
Hubby is one of those people who react to just about every med and supplement. For antibiotics I get the package insert from the pharmacy. Generally he feels worse when the drug reaches peak doseage. Usually 1 -2 hours after taking most oral meds for him.
Everyone is different. And yes, you will have some days that are either better or worse than others. The trend is what counts.
Absolutely must take acidophilus and as many of the other supportive supplements as you can afford. Makes a tremendous difference in ability to tolerate meds and for symptom control. See Dr B's 2005 guidelines as a starting point.
Good luck and let the healing begin.
Bea Seibert
P.S. Muscle tightness/spasms/twitches and gait disturbances are common with Lyme and tickborne coinfections. Sometimes helped by magnesium supplementation.
Hubby gets grumpy when I ask him how he is doing -- one dead give-away is his gait. When he starts walking with a Parkinsonian shuffle or can't walk a straight line (lists to the left) things are starting to go downhill.
Or if his legs shake and look like they are blowing in the wind I need to get him to bed before he falls down.
Believe it or not he can walk 3 miles in the morning and by afternoon can hardly put one foot in front of the other. It is not fatigue though. Actually when he does not take his walk he has more movement problems in the afternoons.
One of the conundrums of this illness.
Posted by Michelle M (Member # 7200) on :
Hello, Lost.
Oh, my goodness. Those 'before the first pill' jitters!
I had that, too. I was scared I would be in such a state I wouldn't be able to get to work.
Just jump in and take your medicine already. You will be able to pace yourself and taper back a bit if it proves too harsh.
With your neuro stuff and lesions, it may be, well, not exactly like a nice Sunday tea. But, neither is feeling like you are now, right? You've got to fix it in order to get better.
You said:
1. Should I start it if I have presented with new neuro symptoms prior?
Yes. Unless your symptoms are something truly alarming, like you've stopped breathing or you can't see, start your antibiotics.
2. Have any of you experience lower trunk tightness? NOT ABOUT DRUG, just symptom?
Yes.
3. If I get a herx, do I stop taking it?
It's best to stay on the antibiotics if possible. However, if you're really truly wretched, get your doc's OK to taper down then ramp back up. Remember, a herx is a GOOD thing. Relish the notion of the little creepy bacteria biting the dust.
4. How do I tell what is a herx and what is rather a relapse or flare up?
Being newly on antibiotics will cause major dieoff of bacteria and exacerbation of symptoms - i.e., a herx. Your present symptoms indicate relapse or flare, whatever you want to call it, it's essentially an infection. So if you start abx and get much worse (highly likely), it is a herx.
Do what you can to get through it and do not be discouraged! Look at it as further proof you have Lyme. Embrace it! Detox it! It will get better each time.
Now. Go pop that pill and good luck. Keep us posted!
Michelle
Posted by bettyg (Member # 6147) on :
lost, here is some info I give newbies; you'll need the eye info promptly on doxy ok!
EYE SENSITIVIES & NOIR, no infrared sunglasses info., 2-28-06 updated YES, I have what you have! Are you on doxy too? That made my extreme eyes
200% MORE sensitive than they we were earlier. I learned a lot about eye sensitivity/lighting on www.marshallprotocol.com board.
Look for AUSSIE BARB'S EAST FINDER and then eyes/sunglasses, etc. Wealth of info there.
I ordered the NOIR sunglasses. 2-26-06 corrected wrong email to:
mention you have lyme and marshall protocol, they will give you 20% off!
Also they have been kind enough to replace the SCRATCHED LENSES & BROKEN BOWS! How's that for service?
I don't drive often at night, but I can wear NOIR's 901 lenses at night while driving; it creates soft candle lights coming at me...tolerable. NOT to wear in town with all the action of people crossing where they shouldn't be, etc.
from LOU to Betty on LONG web links and Thank You Lou!: "If you hit the return key in the middle of a link, I don't think it will be clickable anymore. An alternative that maybe Betty should be telling people about is the tiny url website. I have it on my tool bar at the top of the page and use it for those incredablylongwebsiteaddresses.
All you have to do is ask tiny url to produce a short version, which it will do with a unique address, which you then use instead in your post. Works just the same when clicked! Here is the website, spread the word!
3-1-06, fyi, I tried dragging tinyurl to my toolbar without success, so that''s why I currently have LONG addresses vs. short tiny ones! I''ll keep trying.
Tincup posted March 8, 2005, 2218 Lyme Disease Survey Responses February 27, 2005 - March 9, 2005 1. How many doctors did you have to see before being properly diagnosed? 112 responses Average number of doctors consulted before being diagnosed- 14 Answers ranged from 1- 120 different doctors 2. Have you had problems getting insurance to pay for doctors or treatment? 87 responses Yes- 63 No- 24
3. Have you lost income because of Lyme disease? 106 responses Yes- 99 No- 7 4. How much does it cost you (average) per month for Lyme related expenses? 61 responded Average cost per month per patient- $4,472.49 Low- $500.00 High- $21,492.00
5. How many different medications do you take per day? 77 responded Average - 14 different medications per day Low- 3 High- 25