posted
My 23 year old daughter is moving from L.A. to Wash. D.C. in a week and needs a dr. who takes insurance for initial treatment.
She was just tested for Lyme for the first time after suffering periodic joint pains, muscle aches and weakness, daily migraines, brain fog, etc., for the last three years and being diagnosed with Fibro. She had never been tested for Lyme before now.
Based on a friend's recommendation we were finally referred to a CA infectious disease dr. who treats tick borne illnesses and she was tested for Lyme and related infections plus many other things. She had antibodies to two of the IGg markers for Lyme (Bergdorfia).
Since she's moving he gave her orders for a follow up test in 3 months in D.C. and suggested she find a local doctor. We don't know where to start. She has good insurance and I know that most LLMDs don't take insurance. Since she has untreated Lyme (most likely) based on her symptoms and initial test, it seems that she doesn't necessarily need an LLMD right now, just someone good who takes insurance to treat her initially.
Please private message me with referrals. Thank you.
Posts: 5 | From CA | Registered: Jun 2016
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TF
Frequent Contributor (5K+ posts)
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posted
Sorry to tell you but if your daughter has been sick for 3 years, then she has had lyme for 3 years. It is possible that if she just got bitten, a regular doctor could treat her and cure her.
But, after 3 years of sickness, you daughter definitely needs a lyme specialist to have any chance of getting rid of this horrendous disease.
Infectious disease doctors are the last doctors she wants to see. Forget everything that doc said. Especially the part where he said to do NOTHING for the next 3 months! He said that because he does not expect that she has lyme disease as it is so RARE according to him!
If you are not familiar with the lyme disease controversy that has been raging in the medical community for at least the last 25 years, you really need to learn about it. Until you do, you will not get proper care. You will go to doctors who will NOT help you because everything they believe about lyme is WRONG!
A Boston TV station did a show on the lyme disease controversy a few years ago. Here is the Boston Chronicle video on YouTube:
I suggest you watch this video a few times. It explains the lyme disease controversy and the role the Infectious Diseases Society of America (IDSA) plays in making it difficult for a person to get good lyme treatment.
ID doctors believe that lyme is RARE (so rare that a doctor may expect to see maybe one case in his entire lifetime) and is EASILY cured (with 28 days of doxycycline).
Meanwhile, the truth is that lyme is worse than an epidemic and it is extremely DIFFICULT to cure and only a handful of doctors have enough expertise to cure it.
I went through 2 so-called lyme doctors before I found one who knew enough to get rid of it for me. This doctor treated ONLY lyme disease. The others had a regular medical practice. So, I strongly suggest your daughter go to a doctor whose practice is strictly lyme disease. That is how they gain expertise in how to get rid of this horrendous disease (which is really many diseases).
I had lyme for at least 10 years before a doctor thought to test me for it. Still, I got rid of it by going to a doctor who treated ONLY lyme disease.
So, the best thing you can do for yourself is get an education on lyme disease. The best document you can read to do this is the Burrascano Lyme Treatment Guidelines found here:
Burrascano was the premiere lyme disease pioneer and the most successful lyme doctor in the world. They came from all over the globe to be treated by him. He is now retired.
This document is not an easy read because it was written to doctors to teach them how to treat lyme disease. But, it will give you your education on the horrendous disease.
I got rid of lyme by going to a doctor who follows the Burrascano Lyme Treatment Guidelines.
Here are a few points from Dr. B's guidelines:
You must attack both the regular and cyst (or other) form of lyme simultaneously--requires 2 different antibiotics taken together to do so.
You must test the patient for all co-infections and other physical ailments (thyroid, etc.) and treat everything the person has.
You must treat all co-infections (babesiosis, bartonella, ehrlichia, etc. including mycoplasma) or the patient will not get well.
You must use Igenex for most of these tests--they are a tick-borne disease specialty lab in Calif.
You must use very high doses of antibiotics to kill the diseases (batericidal doses).
You must give the patient supplements, probiotics, herbs such as artimesinin if babesiosis is suspected, and require adherence to rules such as low carb diet, no alcohol, no smoking, rest, and exercise as the patient is able to do it.
You must treat at least 2 months after all symptoms have disappeared (if sick at least 1 year).
These are just a few of the important points you will see in the guidelines. You want a doc who does EVERYTHING Burrascano says to do. He treated lyme for over 25 years, and compiled what he learned so that other docs could benefit from it. Read it in his Guidelines.
If you want the name of a true lyme specialist in the D.C. area who does NOT take insurance, let me know. This is your daughter's best chance of getting rid of lyme disease.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Thanks for your detailed reply. Yes, I am aware of the controversy and have spent the past week reading up on it. I'm aware of the ILADS doctors and protocols and agree that she'll likely need that level of treatment. I'm just thinking that initially since she's never before been treated and the controversy seems to related to those who have been treated and still have symptoms, that the initial treatment should be able to be covered by insurance. At least that's what I'm hoping.
Even though the CA dr. we saw is an ID, he runs a Lyme treatment clinic with IV antibiotics, etc. He treated a friend of mine who had daily infusions of two antibiotics for 6 weeks, covered by insurance. He also did a thorough workup on my daughter for other co-infections, thyroid, Vit. D and B-12 levels, heavy metals, etc. plus sent her for an MRI of her head.
He's the one who told us that the Lyme tests are inaccurate, don't cover all the strains, etc., and that even though she doesn't have antibodies to 5 out of 10 markers, she still probably has Lyme since she has 2 markers and symptoms. If she was staying in CA he would treat her but since she's moving he told her to find a new dr. in D.C.
So it seems that there are drs. who can diagnose and do the initial treatment under insurance even if they're not ILADS drs. and even if they're IDs. I'm wondering if there are any such drs. in the D.C. area. I agree that if after 6 weeks of antibiotics she still has symptoms, then we'll have to pay out of pocket for an ILADS dr. for longer term treatment. I'm just hoping for insurance coverage for the first phase.
Surely there must be other drs. like this in the area?
Posts: 5 | From CA | Registered: Jun 2016
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posted
However, all that being said, please give me the name of your LLMD in the area as we'll probably need that at some point, maybe even initially if we can't find the other. Thank you.
Posts: 5 | From CA | Registered: Jun 2016
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
You said: "she's never before been treated and the controversy seems to related to those who have been treated and still have symptoms, that the initial treatment should be able to be covered by insurance."
Not so. As I said above, the controversy starts as soon as a person gets sick. The ID docs will NOT agree that the person has lyme. They have set up the criteria so that very few people get what the ID doc considers a positive lyme test.
So, most likely, if your daughter goes to any ID doc or regular doc in the area, she will be told that she tested negative for lyme. End of case. She can try it out if you don't believe me. She will be treated horribly.
I was yelled at by the ID doc I went to, and I brought my positive lyme test to the appointment. This was the first time I met her. She entered the room yelling "This is ridiculous! Nobody could possibly have all the symptoms you have listed!" Then, she sent me for another lyme test (hoping that I would get a negative test; positives are RARE supposedly, so my test HAD to be a mistake) and offered me no treatment. This is what will happen. The ID doc will NOT diagnose your daughter with lyme disease. And, if she happens to get retested and gets a CDC positive next time, they will offer her 28 days of doxy. The max would be 2 months of doxy. That will do nothing for her.
I don't know of any ID docs in this area who will treat her if she does not meet the CDC criteria for lyme. And, I have been in the lyme world for a long time. So, I would say that what you are looking for does not exist here.
Then, regarding initial treatment, it WILL be covered by insurance even if the treating doctor is a lyme specialist who does not take insurance. It is only the doctor's appointments that will NOT be covered by insurance.
In fact, long-term treatment is also covered in nearly all cases except for IV treatment. I was treated for lyme for 3 years straight and all of my prescriptions were covered by my insurance.
I have been helping folks find good lyme doctors for at least 12 years. I have been cured of lyme, babesiosis, and bartonella for at least 10 years.
I hang around here just to help the new people find the doctors who will help them.
I had a positive lyme test, but my primary doctor would only give me 30 days of doxycycline as treatment. That is the type of treatment a non-lyme specialist or ID doctor will give your daughter. That is what the IDSA says is all she needs IF she tests positive.
After that 30 days of treatment, she will NOT get anymore treatment. Meanwhile, since she has been sick for at least 3 years, 30 days will do basically nothing for her disease. I hope you can understand now why it only makes sense to go directly to a lyme specialist. Otherwise, no doctor is going to treat your daughter for lyme.
So, knowing this, I hope you can see now that her insurance would pay for as many visits as you like to a doctor who doesn't understand how to treat lyme. Meanwhile, the entire time she is with such a doctor, her disease is continuing to progress.
Her insurance will pay for the medications the lyme specialist orders. However, it will generally only pay for IV meds for 28 days. Few patients need IV, so you daughter likely will not need it. I got well without IV.
I know of only one ID doctor here in the east that treats lyme longterm and he doesn't get folks well. He is in Massachusetts. You will see him on the video I gave you.
The IDSA kicked him off of their panel when they created the lyme treatment guidelines since he argued that they should not create such guidelines.
There is an awful lot to learn about the lyme disease controversy. It certainly can't be learned in a week, but I applaud you for getting into the subject on behalf of your daughter. She is going to have to learn all of this also. With this disease, it really pays to be an educated patient.
Posts: 9931 | From Maryland | Registered: Dec 2007
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me
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Yes, please help your daughter see a LLMD ASAP. TF is correct in saying that insurance will generally pay for the antibiotics, just not the LLMD appointments. But, you can submit the itemized receipt for the LLMD appointment, and insurance may pay a small portion of the doc appt.
Educating yourself is essential when it comes to Lyme.
I'm constantly educating and re-educating myself about Lyme and coinfections (I forget what I read and learn about Lyme often).
Good books to read to read are "Cure Unknown" by Pamela Weintraub and "Why Can't I Get Better?" By Dr. H.
I have a good LLMD in MD (who doesn't take insurance) if you would like that info.
Posts: 1431 | From USA | Registered: Mar 2015
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posted
Thanks to both of you. I was confused by thinking that because the LLMD would not take insurance that that meant that the treatment would not be covered either. Now that I understand that the treatment will be covered either way, that's a big relief.
I think the reason the ID we saw said retest in 3 months is because as an ID he needs to follow the CDC guidelines for being diagnosed, i.e., 5 out of 10 antibodies, not just two. He admitted he was in a quandary since it wasn't a definitive CDC-sanctioned diagnosis even while he admitted how faulty and arbitrary that all is.
Yes, I know that my daughter also needs to research and join the support groups herself, etc. I've sent her all the links. I'm just trying to jump start the process for her as she's currently overwhelmed with all the other logistics of a cross-country relocation (and because I'm going to be paying for her treatment related costs).
Please do give me the names of both of your docs. Also, if you have any other regular docs you like for non-related things, those would be helpful too (OB/Gyn, thyroid, etc.). She already is borderline low thyroid (Hashimoto's) and anemic as well as just found to be low B-12 and D. She's now on supplements for those things. Eventually she'll need treatment for her thyroid too.
Thank you so much. This is really overwhelming and really infuriating that this horrible disease is dismissed by the mainstream. I will be donating and working to help advocate to change things, believe me.
Posts: 5 | From CA | Registered: Jun 2016
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me
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Sending you a private message with myLLMD. TF recommended him to me, and he's great.
Especially since the ID said he was in a quandary, I would really, really steer clear of this doc. Although I'd steer clear of ID docs anyway. This disease is nothing to be messed with--she needs a qualified LLMD as soon as possible.
She also needs to be evaluated for coinfections. I did not test positive on any labs for babesia, but you can clearly see it in the blood smear my LLMD did. My doctor thinks the babesia is worse than the Lyme and causing more of my symptoms.
CDC developed Lyme guidelines for surveillance purposes, and it's not intended to be diagnostic. It's all been twisted around. Lyme is a clinical diagnosis, meaning that tests aren't used as a sole means to diagnose Lyme--symptoms, history, risk, etc. is used along with labs. There are a multitude of reasons why people can test negative.
I highly recommend you and your daughter watch "Under Out Skin." It is very eye opening and gives a "quick and dirty" overview as opposed to the books recommended in the earlier post. But also please read the books for more detailed info as this is a very complex and baffling disease.
Yes, it is overwhelming and scary. And I'm terribly sorry you'll are in this situation. The good news is you found a wonderful support group, and we will help all we can.
Posts: 1431 | From USA | Registered: Mar 2015
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TF
Frequent Contributor (5K+ posts)
Member # 14183
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I sent you a name and lots of information.
Welcome to Lymenet! We will help you here all we can.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Your dear daughter needs to be evaluated and treated by a Lyme-literate doctor (LLMD). Non LLMDs have no clue about this horrible disease or its complex treatment!
A LLMD is one who has treated Lyme disease and the co-infections which come with it for many years and has gotten patients well. A good one will follow Dr. B's Guidelines, the "gold standard" for Lyme treatment.
When your daughter calls for an appointment, have her ask if they have any cancellations or a waiting list. Patients have been able to get in sooner by doing this.
Btw - please break up your posts into 2-3 sentence paragraphs, as there are people on Lymenet who cannot read large blocks of text due to neurological problems from Lyme.
To do this click the pencil/paper icon, make your changes, then click "Edit Post". Thanks.
Posts: 8981 | From Illinois | Registered: May 2006
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Thanks so much. We are starting to do the research and check out all the links. I've started reading Cure Unknown too. It is horrible and outrageous about the state of affairs surrounding Lyme.
We're on our cross country trip now heading to D.C. so we won't have too much time until next week. At that time my daughter will join the support groups and starting researching herself too.
Thanks again.
Posts: 5 | From CA | Registered: Jun 2016
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me
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Great work!!!!! I'm so proud of you for getting "cure unknown. "
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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me
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Member # 45475
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Also, if you want, you can PM me again and we can set up a time if you would like me to talk to you and/or your daughter. I've found that support has been essential for getting through this.
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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