Lyme , new doc appt today

How long have you had Lyme? So were you seeing a LLMD before? Is that who put you on the herbals? Have you been on abx. before?

I just wanted to add, I would be retested often to check my number, and then the treatment would follow that. So it may be longer then 21 days, depending on my numbers , and how I feel.

Justme. I'm so sorry to hear this - especially with the luck you've been having with herbals. I'll be thinking of you!

Just me,what kind of benefits or changes have you seen? Are you just doing the core 3? how many times daily?

I would be very hesitant going to an infectious disease doctor and trusting their judgement regarding Lyme. Most likely, you'll do the 21 days and then if you relapse or are not completely better, they'll tell you it's residual or some other diagnosis like fibro, CFS or depression.

Every ID doctor will tell people that they have successfully treated Lyme in the past. Their idea of success is much different than a LLMD's and a patient's idea. They tend to think as long as the patient didn't die and doesn't have full heart block, they're fine. They don't consider quality of life, co-infections or the myriad of other factors that can drastically affect a patient's health.

If I were you, I would find a LLMD through someone that has LATE stage Lyme, your local support group or the LDA. It seems very drastic to me to jump right onto IV antibiotics but for some people it works. I would just be very cautious since they aren't assessing you for co-infections and likely will not diagnose or continue to treat on a clinical basis. They have already mentioned that they will rely purely on "numbers" to determine your treatment. That is a HUGE warning sign that the doctor is not ILADS trained. Lyme is a clinical diagnosis. Unreliable tests should not be used to determine treatment.

While it's possible for people to die from Lyme, fortunately it's relatively rare. Lyme is more of a disabling condition for the majority of people. I also have a severe case with organ involvement, full seizures, severe neuropathy, twitching etc. I had a known tick bite with a rash and a high fever at the onset of my symptoms and infectious disease doctors refused to even see me and told my doctor over the phone to prescribe anti-depressants and not to test or treat me for Lyme or co-infections. This type of attitude is what generally happens with ID doctors for a large percentage of Lyme patients.

Regardless of what you choose, do quickly get under the care of a doctor. Everyone has a different opinion regarding herbs vs. antibiotics. My belief on the issue is that some people NEED antibiotics for at least part of their treatment. Even if you're doing only herbs and are strongly against abx, you should work closely with a naturopathic doctor who can keep track of your kidney and liver function and make sure that you don't progress.

Post Edited (Summer3) : 12/20/2012 4:39:31 AM (GMT-7)

Thank you all, at this time, I am trying to just get better, I am having daily seizures, and they are getting worse. So for now I am going to wait for my blood test to come back , it should be another three days. In the mean time its all herbal for me. I am reading as much as I can on Lyme, and hopefully find something that will help me.

Thank you, I have gotten some emails about the seizures, wanted to know what they are like. For me, my legs start burning really bad, I know a seizure is going to kind of start. Some times my legs won't move at all, like I am frozen. Then I seem to shake all over, sometimes I make sounds I don't know , and the pain gets really bad. Also I lose it for a little while, I don't always know what is going on. It's kind of hard to explain. Also after it happens I am very stiff, sometimes I can't walk for a day , or when I do , I walk very stiff.

It's all very scary, and if other people are going through it please let me know what they think helps.

justme.

Justme-it sounds like you have one of the few good ID Drs. If he is willing to work w/ a LLMD to oversee your care, that says a lot. It sounds like your symptoms are severe and worsening w/ the seizures, so an in-patient treatment sounds like a good idea. I know of someone that did that due to severe heart problems and he recovered completely. He was hospitalized w/ IV abx. for 6 weeks or so and then did home IV abx. for a total of 6 months and then oral abx. for 6 additional months. The only symptom he has now (10 yrs. later) is numbness on one side of his face and that is due to permanent nerve damage. Anyway, it would probably be beneficial for you to be in-patient where you can be monitored,especially if the ID Dr. will work w/ a LLMD.

Justme, so sorry you're going through this :(
I agree with the others that it sounds like you've actually found a good ID doctor, and that's great!

Traveler makes a good point about using caution when driving, and not just for those that have seizures. I was driving home from my doctors appt yesterday and the sun was in my eyes and I was seeing splotches. I felt lightheaded and decided to pull over (should have done it sooner- I'd just had blood taken on an empty stomach). I also have terrible night vision, and driving at night in the rain is out of the question these days. I see traces and everything seems to blur together. So I have to be extremely careful (I'm 32 going on 95 here, lol).

Also justme, have your seizures always been that way, or how did they start? Two nights ago my left leg was shaking terribly, and uncontrollably. I cant help but wonder if this could have been a precursor to a seizure. Please let us know when you get your blood test results. Do you know exactly what they are looking for on your blood work?

When do you see the LLMD?

I actually think its a good sign that they're taking these precautions. I'm glad they are taking you seriously, and it sounds like they have your best interest in mind. There are some days I get so sick that I'm scared, and I often think being in the hospital would be a relief. I agree with Mystery Illness & springsjean, If you can swing it, go to the hospital for treatment. At least you'd have someone keeping an eye on you around the clock! And, if you ever get lonely, we're always here to "talk"!! :)

Take care of yourself!