posted
I have been on Doxy 100 BID for 3 1/2 weeks and the whole time I have been housebound. I haven't made it to an LLMD yet and am seeing a pretty good duck. At least, he is willing to learn.
Is this typical to be so sick when first starting abx? I am having so much more pain and the fatigue is unrelenting. My muscles in my arms hurt so much and are hard as a rock. They used to do this alot but hadn't in a long time.
Is this a herx or what? I thought they didn't last this long. I don't know what to do. I go see my dr tomorrow and am sure he won't know what to do either. He will read what I take him so do any of you have anything specific that would be good for him to read? He will work with my LLMD when I get one. So that is a plus.
I would appreciate any suggestions. This is getting pretty old. It's a good thing I don't mind being home.
lla2
Frequent Contributor (1K+ posts)
Member # 2364
posted
sapphire,
according to ilads guidelines you are on too low a dose of doxy...you should be 300-600mg a day...which means;
1. you will be killing off the weaker bugs and leaving hte stronger bugs to multiply like crazy.
2. you will build up a tolerance to the medication so it won't be effective in treating what you want it to...
3. the bugs can continue to multiply and get in deeper into your central nervous system.
you need to see an llmd , and fast! even if this doc is willing to learn...he isn't getting the right info and you will get sicker instead of better...sorry to tell you this, but your health is important..especially at the start of treatment, or you will be like many of us, in an unending loop of treatment....
find an llmd....
best,
Lisa
Posts: 4713 | From saunderstown, ri Usa | Registered: Apr 2002
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I do realize that I am on too low of a dose but am I doing more harm than good by taking it??
I am too sick to travel right now. I would have to travel from KY to MO and I don't feel I can do that right now. I get sick when I ride and flying is out. I have POTS and don't think I could tolerate flying.
Just riding in a car is unbearable sometimes. I have to take a valium just to go to the dr. Should I stop the doxy so I can hopefully feel well enough to travel?
Plus hubby and daughter have both been dx'd with lyme and I know we all need to see an LLMD. I just don't know how to do it. I get sick just thinking about riding in a car. I am so confused.
I am dealing with pain from taking antibiotics. I am taking bacilian injections and zithromax. I called my doctor (lyme literate) and he told me to back off the zithromax. Everyone is different though and you do need to see a LLMD ASAP. All of you do.
I have two boys that were diagnosed with Lyme and they are being treated. The sooner the better for the rest of your family too. I would not want my worst enemy to go through what I am right now.
Is MO the closest place for you to see a doctor? You might want to look on this website and choose Seeking A Doctor section to find a doctor closer.
My family doctor is treating me for my pain. He knows that I was diagnosed with Lyme but I am not quite sure that he believes in my treatment. We all will be so lucky to have our family doctors to jump on the wagon and start treating for this horrible disease. It is getting so bad and people is just not understanding.
I will go for now. You take care.
Maria (firsttwin)
Posts: 164 | From Rising Sun, MD, USA | Registered: Apr 2004
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Thats pretty low dose of doxy. It could be aherx if your immune system is working and the doxy is killing the spirochetes. Write down when this started and when it stops then get to the llmd .
WELCOME To LYMENET
Here's more goodys! A typical response to newcomers.
Hi and WELCOME! Get a LLMD or at least Dr that is willing to learn about lyme. Borrelia Burgdorferi is a clinical diagnosis, based on symptoms and on your response to treatment. Good Luck, bumpy road ahead.
( No you don't always see a bite and if there's no bullseye the only way your going to be able to tell is (symptoms) and (((Maybe))) WB or lyme dot blot 3 day urine banged with abx's to free your antigens up for the test. ) See this ( . )thats the size of the larva stage tick... Next nymph size... ( * ) Next is adult ( o ) to ( 0 ) Pretty small????? HUH
2. A copy of this is stored in computer Help section.
Posts: 10564 | From PA Where the Creeks are Red | Registered: Jun 2003
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lla2
Frequent Contributor (1K+ posts)
Member # 2364
posted
Yes, according to guidelines you could be doing more harm than good..you could be pushing hte hearty, strong spirochetes deeper and deeper into the tissues and central nervous system....
I wouldn't fool around...find a llmd...a little medicine can be worse than none at all ...according to what dr. jones told me about my kids anyway...
Lisa
Posts: 4713 | From saunderstown, ri Usa | Registered: Apr 2002
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posted
It took me to about 5 weeks on abx to feel any real improvement. My doctor kept telling me that if your not feeling better its probably something else. Needless to say I was freaking out. I dont like LD but I REALLY dont like the alternatives. Especially since this is a formitable disease, at least some think. hang in there, it takes time.
chime
Posts: 232 | From kennett square, PA USA | Registered: Aug 2004
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posted
welcome sapphire! I'm glad you're going to MO to the doc there. He's the best! Be sure to make your appointment SOON! Then figure out later how to get there!
Maybe you could tolerate the trip if you stop the doxy for several days before going?
I herxed continually for a year when I first started treatment. But then, I'd had the Lyme FOREVER too.
Ask your dr for pain meds. You don't want to take them all the time, but that way you have them for the days you just can't stand the pain anymore.
posted
Your dose is too low and you are probably getting sicker. Its probably not a herx, but the disease. Doxycycline is usually 400-600 mg per day not 200. You are NOT seeing a good duck because there are no "good" ducks or they would not be ducks. You have to see a LLMD and soon and get on a solid good protocol. This is to serious to mess around with tiny doses and waiting and watching. You should have already been to a LLMD. Do not waste another day..hour!!! take action!
posted
Thanks you two. I will be making an appt. this week. I figure it will take a while to get in to see Dr. C.
Wildcondor, you are right, there are no good ducks. Mine really quacked Monday. My husband and daughter both tested positive so they went, too. He said if he saw a whole family with lyme he would write a paper on it. I thought about telling him he had better start writing.
The only reason we are going to him is to have a dr who will work with our LLMD. So that's why I'm not saying too much right now. If he doesn't believe it after we see the LLMD I will not go back.
He did tell me to bring him anything I wanted him to read. I thought that was a good sign but not so sure now. I haven't taken him anything yet. My guess is, he's never had a lyme patient. That's not a good sign.
posted
Sapphire, I know of a doctor who works with LLMD's that is not to far from you. She is helping several people around here. Its probably about 30 minutes from you. E-mail if you want more info. Can't put the name up without permission.
Posts: 59 | From USA | Registered: Dec 2004
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
dito on above and look out for Sun Burn. Read lable warnings and fallow carefully. You Must take on time. I bought a timer to remind me. Very important. I take 600 mg a day. -- Jay --
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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I agree with Wildcondor..your doxy dosage is too low..unfortunately, my first LLMD only gave me 200 mg of doxy a day..my weight had dropped to 110 lbs..she said that this would be sufficient..I came to lymenet and posted my concerns
everybody said my dosage was too low..doctor would not give me a higher dose..3 months into treatment..my health got worse..and I started to have neuro symptoms..
I switched doctors and I now do IM bicillin..within 3 months, I have made great improvements..
posted
Thanks again to you all. I do know that my doxy dosage is too low but unfortunately there is nothing I can do about it till I see an LLMD. I asked my dr and he said that is what is recommended. I may take him Dr. B's treatment guidelines and see what he says.
JMardis, I will email you. I am interested in the name of the dr. I just don't think this one is going to work out. I had high hopes in the beginning.
lla2
Frequent Contributor (1K+ posts)
Member # 2364
posted
you could go to anohter clinic and see anohter dr. adn get more doxy until you see your llmd and combine them? I' know some who had to do this until they saw an llmd...questionable, but it worked...
Lisa
Posts: 4713 | From saunderstown, ri Usa | Registered: Apr 2002
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Health
Frequent Contributor (1K+ posts)
Member # 6034
posted
Sapphire,
I dont agree that all can handle high dose antibiotics right away. Herxing will kill some of us with high dosages right away. Especially if the heart or lungs are involved.
It is impossible for some of us to go high dose initially, if we do, we will die. Simply die from a herx.
I had to start off with 60mgs of the biaxin a day, and worked up. I can tell you that 60mgs was making me crazy as heck, vibrating off the chair, my mind almost splitting with insanity. I was so toxic with lyme I was ready to die, and 60mgs of the biaxin was all I could handle for a few days. Then work up.
I also had to start off with 100mgs a day of the Doxy. If I went any higher my lungs would have shut down.
I do agree that higher doses will be needed by most to kill the lyme, but some of us have to work up to the higher dosages.
I was told this when I first came here, and when I kept at the high dosage I was so ill my face was bleeding, my skin was raw in places from the herxing. I called up the LLMD and he said to stop the high dose right away, and to never go that high if I am that sick.... I went off the antibiotics for 2 days, then started again with lower dosage I could handle.
I believe you will know when you can handle more. If you go too high, the herxing CAN kill you, it would have killed me. I cut back.
I am now at 300mgs of the Doxy, and will be working up to 400mgs as soon as I can handle it. I have been on Doxy for 5 months.
posted
There are many of us who simply cannot take full doses of the meds; having tried it myself and almost killed myself I know.
It is easy to say that small doses won't work but there are those of us who cannot do it any other way. It is either that way or no way at all.
I am currently pulsing 200mgs mino every other day and it took me a month to be able to get to that point. I hd my pharmacist break down the mino into 50 mgs a capsule in order to ramp up. this has worked for me and now I can take the full 200 mgs. I am working towards doing this every day; again with 50 mgs dosages.
I came close to seizures with full dosages; not good, live alone. So please have mercy of those of us who cannot take these giant doses of meds. We are very sick little puppies. Lymelady
Posts: 484 | From Fredericksburg, Va USA | Registered: Sep 2004
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