I know seeing an LLMD is the best thing to do. But is anyone here NOT able to see one? Does anyone just see their primary care doctor?
I was dx'd in May with Lyme and my Primay dr. gave me 100mg of Doxy for 30days. I go into see her tomorrow for a follow up. SHe said that if I am not feeling 100% she will give me another 30days of doxy.
After doing my own research after my initial appt with her, I found this site and feel that I need a different treatment plan. Seeing an LLMD is out of the question for me financially.
What can I say to my dr. about all the things I have found on here? How do I tell her I researched and found all these different opinions on Lyme without sounding like a googling patient with abstract ideas....
Is there a treatment plan I can ask her for? If so, what should I ask for? Is there something that I can print out and bring with me? Something written by a dr?
My appt is tomorrow, I need all the help I can get!
Thanks everyone.
Posted by JoesMom (Member # 15699) on :
My son is not seeing an LLMD right now as she is out of the country indefinitely. He is just seeing another primary care doctor who is pretty clueless. But, he needs to have someone until we move so that is that for now...
If you have info for the doctor and you think she is open to it then go for it. Maybe you can provide some for her and links to other info so that she is not overwhelmed by it. Ask her also if she knows of other primary care drs that are treating it and if she can discuss options with them; if she has been to the ILADS website etc.
It's kind of touchy as you need her help and don't want to bombard her/alienate her. If she isn't open to anything as of yet, don't get discouraged and don't give up. Sometimes it takes them a while to come around, especially if this is a new thing for her. You can always hit her with stuff little by little and do it that way... at least it won't overwhelm her and that way it let's her know that YOU are up on things! An informed patient is either a blessing or a threat- you will find out which one you are... :-)
Wishing you the best on this! Let us know how it goes.
Posted by TerryK (Member # 8552) on :
There are people here who for one reason or another cannot see an LLMD.
Unfortunately, treating lyme disease is fairly complex and most M.D.'s cannot or will not spend the time it takes to learn how to treat lyme disease appropriately. Even if they did, it takes time to become an expert.
If you have a doctor who is willing to take the time to learn, you can point them to the ILADS website where they can join and receive help in learning about lyme disease.
There are also many papers on their website which are available to read at no charge. One does not need to join in order to use the website. One can also buy CD's of previous lyme conferences. Lots of great info there.
Terry
Posted by LightAtTheEnd (Member # 24065) on :
These documents on the CALDA website were useful to show to my local doctor. I used them to persuade her to increase my initial antibiotic prescription from 3 weeks to 3 months, while I waited for an LLMD appointment.
These contain short quotes from many different research studies that have shown that Lyme disease bacteria can persist in the body after antibiotic treatment, and that many people relapse after being treated too short a time.
Besides the ILADS website (www.ilads.org) which includes treatment guidelines and research, you could show her the book "Cure Unknown" by Pamela Weintraub or the DVD "Under Our Skin."
Those explain the history and politics of Lyme disease, and if she is open-minded, she might begin to see how she has encountered incorrect information about Lyme disease in the past.
If your doctor is convinced that the IDSA position is correct, then she will give you up to 60 days' antibiotics and then send you away and tell you that you don't have Lyme any more, if you ever did. If she does that, don't waste any more time with her.
The reason that Lyme literate doctors are necessary to treat Lyme disease properly is that it requires a large amount of experience to recognize it and to design an individual treatment strategy for each patient.
Different patients may have different coinfections and different problems with yeast, viruses, parasites, mold, heavy metals, and pre-existing health problems that affect them in different ways and require different treatment. There are different strains of Lyme disease that cause different symptoms. "Lyme disease" is not just a single disease--it is a complex of issues that are frequently associated with infection by Lyme bacteria.
My local doctor was willing to treat me outside the IDSA guidelines after I showed her the research. The problem was that she did not know enough about Lyme disease to know what to do next when her first try didn't work.
Still, if your doctor is open minded and dedicated to helping you, that is much better than nothing. If both she and you are committed to learning enough about Lyme, you could get some helpful treatment from her.
Another option you have is to explore natural treatments that you could do without a prescription.
The best source of information that your doctor might respect is research articles by members of ILADS on the ILADS website. You could also print out and give her the ILADS treatment guidelines for Lyme disease and Dr. B's latest guidelines. I don't know the links for those, but somebody will post them for you.
One thing we all know very well around here is the need to make do with whatever is available to us. So many of us have problems with money and mobility and may be unable to work and not have insurance.
On the other hand, the best and most expensive Lyme disease treatment does not always work in every case, and some strange-sounding treatments that people have tried have been known to work for some of them.
Do not give up or despair just because you can't go to an LLMD right now. Keep learning as much as you can, because information gives you more power to help yourself.
Posted by Lymetoo (Member # 743) on :
Take her the copy of the ILADS guidelines and/or Dr B's guidelines.
You need at least 400mg of doxy per day if you want to get well.
(see disclaimer below)
Posted by I*knew*it*was*Lyme (Member # 25932) on :
Where can I find Dr. B's guidelines?
Posted by Sammi (Member # 110) on :
Are you still not feeling 100%? Make a list to take with you to your doctor and print off a TBI symptom list to show her.
The ILADS page that Sammi linked to also has the treatment guidelines prepared by ILADS. These have been peer-reviewed and are strictly abx-oriented for treating TBI. So, they may be handy in the event you think your doctor might be turned off by Dr B's Guidelines that include detox, etc. etc.
Posted by sixgoofykids (Member # 11141) on :
ditto on the guidelines. Keebler and a couple others have posted links. They are over 30 pages long, but it's very thorough.
Posted by massman (Member # 18116) on :
LLDC Posted by sickpuppy (Member # 23846) on :
Some llmds take insurance. Do you have insurance? If so perhaps you should try this route rather than trying to educate a PCP yourself. It's just too complicated of an illness.
And 100 mg of doxy isn't going to do anything except turn spirochetes into cysts. Not a good idea. It's a waste of time.
Posted by nefferdun (Member # 20157) on :
I live in Montana where most doctors are convinced there is no lyme disease even though the state epidemiologist confirms "a lyme like organism" exists here in the wood tick. So it has been very hard for me to get treatment. You have to be well educated and proactive. I printed out an article I found that was an interview with the epidemiologist and took it to a new doctor along with Dr. Burrascano's treatment guidelines. I underlined what he needed to give me.
This GP has been completed disinterested in learning anything about lyme but he will give me what I ask for. I had to find out what co-infections I have and tell him.
I suggest you look for a doctor that is off the beaten path, one that is in private practice and does not accept insurance - you have to submit it yourself. Look for less conservative doctors, those that prescribe other conditions based upon symptoms rather than tests. This doctor will prescribe thyroid medication based upon symptoms rather than test results, and he even give medical marijuana medical cards (which I have refused twice). Frankly, he is a worthless doctor, in my opinion, but I get the abx I have to have.
You cannot get well on 100 mg doxy. You need 300-600mg a day for at least four months, unless you were just bitten a couple of weeks ago. You will have to figure out what co-infections you have and treat for those as well.
You are wasting your time with herbal remedies as it just doesn't cure you.
As far as not having the money for an LLMD, you may lose your job if you are not treated and then you will have no money at all. Sometimes when people get really sick, they sell everything to get treatment.
The last resort is going online to order drugs but this is risky because you can poison yourself and/or damage your liver.
The biggest problem with designing your own treatment plan, with or without a physician, is trying to figure it all out with no diploma in science and a lyme brain that can't remember anything longer than 30 seconds.
Posted by karenl (Member # 17753) on :
I have no LLMD. But I did my tests at Fry lab and then your doctor can talk to them and discuss treatment. This is a big help for a MD. Pm me if you need more help.
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