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.
Thanks,
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
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.
Sapphire
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)
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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
chime
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.
I hope that lets up soon!
------------------
oops!
Lymetutu
I went to my PCP Monday and he put me on clinoril for the pain. I was already feeling better so can't say it was the med. making me feel better.
I will be making an appt. with Dr. C very soon. Hopefully I will be able to travel. If not, I'll just have hubby knock me out and take me.LOL
Take care,
Sapphire
------------------
Lyme Disease Help
http://www.wildcondor.com
Try B6 & Magnesium Asperatate for your muscles. These plus Total Detox and Olive Leaf Extract helped me greatly before LLMD appointment.
Lyme typically leaves a lot of toxins in your body and they can cause a lot of pain too.
And yes Dr. C is the closest to us. If you need any more info, just e-mail me.
Hang in there.
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.
Sapphire
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..
please hang in there!!
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.
Take care,
Sapphire
Lisa
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.
Trish
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