Hello everyone! After getting bitten by an adult female deer tick back at the end of October, I went to the ER in my area 4 days later and was able to get 2 weeks of Doxycycline (200 mg) prescribed to me. Before that course was up, I went to see my PCP and was given 1 more week (for a total of 3 weeks of treatment) of Doxy. After that, I still felt as if I was experiencing odd symptoms and returned to my PCP's office. She wasn't available, so I saw another MD in the practice. He told me my symptoms were "all in my head", that "chronic lyme disease does not even exist", and he ultimately refused to prescribe any more medication.
It has been weeks after that occurred and I am still having uncharacteristic fatigue, random joint pains, and a sharp stabbing pain sensation in the tips of some of my fingers and toes. I tried to call a lyme-literate naturopathic doctor in my area, but he was extremely expensive ($450 for the first visit), and I cannot afford such a cost at this time. I feel as if I just need to be prescribed more Doxy.
That being said, what do you do if your PCP refuses to give you more medication even though you are still having symptoms?
I am new here, so I am not yet familiar with these issues or what to do about this. I know I have a lot to learn. Thank you for listening!
Posted by sixgoofykids (Member # 11141) on :
Welcome to Lymenet!
That's pretty typical. That's why most of us end up paying out of pocket for and LLMD or LLND. Unfortunately, there aren't a lot of options.
Not only was your prescription too short, it was too little as well. The lyme docs say 200 mg twice daily.
Posted by talula78 (Member # 51087) on :
Thank you for your reply! Do you know what the typical cost is for going to see a LLMD or LLND? Was the $450 I got quoted normal? The first visit is supposed to be 2 hours in length for that cost.
Posted by TF (Member # 14183) on :
$450 is a little on the low end for a medical doctor who specializes in lyme in my area of the country. A "lyme specialist" is a medical doctor whose entire practice is lyme disease. Or, at least half of their practice is dedicated to lyme disease. That is how they become experts on lyme.
$600 to $900 is typical in my area.
The main thing is to be sure that this ND is an expert in lyme. You are paying for expertise. Read his website. Does he treat exclusively lyme and other tick-borne diseases?
Also, find out ahead of time how he treats lyme. Docs are free to treat how they want, so some give just herbs, some use low doses of antibiotics, and some follow Burrascano (high-dose combinations of antibiotics taken together).
Some don't believe coinfections are important, but they are.
So, you have to research any doc before you lay out the big bucks.
If you want 200 mg of doxy twice per day for 2 more months, call and see if he will prescribe it. Ask if he will continue prescribing antibiotics until you are symptom free (no matter how long that takes) and then at least 6 additional weeks after becoming symptom free.
This is what Burrascano recommends.
Read the Burrascano Lyme Treatment Guidelines to get your education on this disease which is really a combination of diseases. They are here:
Once our regular doctor refuses to give us more than 30 days of doxy, it is off to the lyme specialists!
Choose wisely. There is a real lyme doctor learning curve. Contact as many lyme support groups as you can to find out who is getting people well in your area.
See Support Groups on the left side of the page. Facebook also has some.
Many doctors treat lyme, but very FEW know enough to get rid of it for a person. You are at the stage (early after bite) in which success is more likely IF you get proper treatment.
So, do a lot of checking and be sure before you go that the doc will treat you the way you want to be treated,
I got rid of lyme, babesiosis, and bartonella by going to a doc who followed the Burrascano Guidelines. And, I had gone undiagnosed for at least 10 years.
I completed my treatment over 12 1/2 years ago and I am still well.
Get GOOD treatment now and get this disease behind you!
Welcome to LymeNet. We will help you here all we can.
Posted by talula78 (Member # 51087) on :
Wow, what a fantastic post, thank you! Perhaps I am a little naive about the cost after all. I am definitely going to continue to shop around while keeping your suggestions in mind. There is a support group nearby that I am hoping to start attending at the beginning of next month, too.
Also, when it comes to the difference between LLMDs and LLNDs, are LLNDs able to prescribe medications like Doxycycline (or any of the others that Burrascano recommends)?
And, congratulations on your successful treatment! It sounds like you went through quite an ordeal.
Posted by Lymetoo (Member # 743) on :
Good luck, tatula! I hope your new doctor can help you get well!
Posted by Lyme248 (Member # 51011) on :
In some states LLNDs can prescribe medications, and some states they can't. I don't know about Maine.
I've heard there are doctors at walk-in clinics that take insurance that treat Lyme, and I guess you could go to an infectious disease specialist as a last resort. But in my opinion that would NOT be a good idea. Spending more money is probably worth it.
Posted by BobG (Member # 39642) on :
If your dog or horse has Lyme, you can get many medications at pet stores or agricultural stores. They are also made to good manufacturing practices and are safe.
Your PCP is an ignoramus and does not treat to the Lyme protocol of the government's National Guideline Clearinghouse.