posted
A very good doctor --who my mother has worked with for years (my mom is a nurse) and trusts-- recommended an infectious disease specialist for me to see.
I received the lists of LLMD's in my state and he is not on the list. Should I only see an LLMD from the list or should I give him a try?
He's been a practicing physician for a long time, he's treated other lyme patients, and he accepts my insurance, but that is all I know about him.
There is only one doctor on the LLMD list that takes my insurance and his reviews are mixed at best-- that is the main reason why I'm considering this infectious disease doctor. Cash pay is not an option for me.
Also, the infectious disease specialist is only 2 hours away whereas the LLMD is 4 hours away. I don't have a car, so this is a big deal for me.
Opinions?
Posts: 29 | From PA | Registered: Jan 2013
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
I don't know if you are aware of the differences in the way infecitous disease doctors and Lyme doctors treat.
In a nutshell, infectious disease doctors are typically the worst to see for tick-borne diseases. Most believe that chronic Lyme does not exist and that minimal, short-term treatment is all that is needed to eradicate these diseases.
A good Lyme doctor treats each person individually based on their type of symptoms, how long they have been sick, which infections they have etc.
I would not recommend seeing the infectious disease doctor. He may be a nice person, but you need someone who is knowledgeable about treating these diseases.
Posts: 4681 | Registered: Oct 2000
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posted
Two hours is a long drive to see someone who will not treat you after 2-4 wks of treatment.
So if you're chronic, it may sadly be a waste of time.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Refer to the many educational links posted in a previous thread for you, especially the links explaining the differences between IDSA and ILADS.
And, the links for the documentary "Under Our Skin" and the book "Cure Unknown" as these are essential to the understanding of why the doctor you choose can either add nails to your coffin or help to save your life.
You say the ID doctor (IDSA) has "he's treated other lyme patients" (end quote).
Who say so?
Have you talked with ALL the lyme support groups within 100-200 mile radius to that doctor? Have you received good reports from patients, themselves regarding CHRONIC lyme AND also for other tick-borne infections?
The definition of "treating lyme" varies widely. And that can be a devasting thing to misinterpret.
How to Approach Doctor? LINKS to learn more -
Posts: 48021 | From Tree House | Registered: Jul 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
All doctors recommend infectious disease specialists to people who have lyme disease. That is because this is the specialty that is SUPPOSED to treat lyme disease.
Unfortunately, infectious disease specialists must follow the guidance of the Infectious Diseases Society of America (IDSA). The IDSA gives them their orders. The IDSA has put out lyme treatment guidelines that say that lyme is easily cured with up to 30 days of low-dose doxycycline and that chronic lyme (meaning, getting lyme disease years ago and still having it because it was never treated) does not exist.
So, now you know why it is extremely rare for an infectious disease specialist to help a lyme patient. My primary care doctor "treated" me for lyme also. He followed the IDSA Guidelines and gave me 30 days of doxycycline. He refused to give me any more after that, even though I told him that my symptoms all came back and I was suffering terribly.
Since it will be difficult to even get to the ID doctor, I suggest you call his office and ask how long he treats a person with lyme disease and how he treats them. If it is just the 30 days of doxy, why travel to him for that? You can get the same at a walk-in clinic.
Get as much information as you can about how this doctor treats before going through all of the effort to find a ride to him.
See "Support Groups" on left side of this page. Contact all that are in his state or nearby states and see what they know about him. Research him thoroughly until you are satisfied that you know how he treats.
That's what you have to do to avoid wasting time and effort. That's what we all do in order to find a good doctor to help us with this horrendous disease.
Where are you in PA? If you aren't too far from a train, could you travel that way to a good lyme doctor?
If you give us your location, it may be that others on this board can help you in various ways--with doctors, travel, experiences, information, etc.
Posts: 9931 | From Maryland | Registered: Dec 2007
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
They will treat for 2 weeks. If you don't get better they will tell you it must have been something else. They will say it's auto-immune or all in your head.
I wasted precious, precious time with an ID Dr who allowed my Lyme to go neuro and more entrenched.
posted
Thank you, everyone, for your replies. I'm sorry, as this is all overwhelming to me, so I may seem to ask a lot of stupid questions.
I was bitten in 1996 and had the EM rash. At the time, I didn't know it was an indicator of Lyme Disease-- I thought it was just a bug bite. I have never received treatment. I've had a lot of symptoms and for the last ten years have had severe neuro problems. I truly thought I had early-onset Alzheimer's.
Things are really bad. I forget food is cooking. Sometimes I sleep for 20 hours a day. My conversations are holed with long pauses because I forget what I was saying. Before this, I was a chemist and gave speeches on disability rights issues, so I was pretty darn smart and articulate. Now I'm just full of blank spots.
I live two hours east of Pittsburgh, PA. I can travel by train, but I'm also a single mom to an Autistic child, so I can't be away for long.
Truly, my biggest barrier is that only the one doctor on the LLMD list takes my insurance and his reviews are just okay.
There are no support groups in my area. I joined the somewhat-local Yahoo one and never received any replies to my questions, so I gave up on it.
No, I know nothing about this doctor except that I was told he's treated Lyme patients before, that I could get in to see him soon, and he treats via IV antibiotics.
Posts: 29 | From PA | Registered: Jan 2013
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posted
I suggest checking with PA support groups about him and see if they know anything about him. The doctor has to know how to treat Lyme patients adequately.
Posts: 13116 | From San Francisco | Registered: May 2006
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Pocono Lyme
Frequent Contributor (1K+ posts)
Member # 5939
posted
I see an infectious disease doctor not on the list. At least he wasn't at the time. He is much better than a highly regarded LLMD I had seen for over 2 1/2 years.
I was very skeptical and almost didn't keep my appt. since he wasn't on the list.
I did go and was very pleased. On my first visit, he ordered a PICC line, SPECT scan, IV meds and orals, and IVIG.
I asked him if he knew of ILADS and he said "OF Course but I don't get involved with either ILADS or IDSA. I do my own thing".
I don't think it would hurt to try him. You may be pleasantly surprised as I was.
If not, you don't have to go back.
I've heard of other doctors doing a pretty good job at treating who aren't on the list nor do they want to be.
Good luck to you.
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
The way I look at it is if your insurance covers the visit why not go and atleast hear what he has to say. Like Pocono Lyme he may turn out to be great. You can always see an LLMD after.
Posts: 1748 | From United States | Registered: Dec 2011
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
I am sorry you have been so sick. Everyone has given good advice.
If you think you were infected during pregnancy, you should have your child evaluated also. Lyme and other tick-borne diseases can be transmitted during pregnancy.
Posts: 4681 | Registered: Oct 2000
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posted
That's interesting - so some infectious disease doctors might come on board if they're not connected with either organization. Which means folks would need to find out the caliber of an infectious disease doctor's knowledge and protocol.
Anyone who's new to this cannot evaluate this - experienced patients need to be the evaluators - this for any of you who are new, to know to run it by those who know what's going on.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Thank you, everyone. I have decided to see the ID doctor since I can get in quickly and will still make an appointment with the LLMD since that appointment will be months away. If the ID doctor stinks, I will just not go back.
Yes, I am working on getting my child tested because I was infected before I became pregnant. Posts: 29 | From PA | Registered: Jan 2013
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posted
Good .. keep the apptm with the LLMD.. hope he is a good one.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
I am sorry your child may be infected, but knowledge is power.
I don't know if you are aware of the unreliability of testing, but there is no completely reliable test for Lyme. Labs such as Quest and LabCorp do not list all the Lyme-specific bands on the Westen Blot that IgeneX does. Some people who have Lyme test negative. A knowledgeable doctor knows this.
Good luck at your appointment.
Posts: 4681 | Registered: Oct 2000
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Avoid "lumbar puncture" (spinal tap)
Avoid steroids -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
My grandson was infected in utero and was born with atrophy of the optic nerves. At that time I didn't know anything about Lyme Disease except that she had been treated for it. A few years later, we learned that my husband had chronic Lyme. After going to a LLMD in IL we were urged by a friend to go to PA to see a LLMD. He was wonderful. By that time I was convinced he had Lyme too. I took home test kits that the doc supplied, drew his blood and a friend drew mine. They both came back positive. A good LLMD will test your little boy too.
-------------------- Ann Posts: 66 | From Bourbonnais, IL, USA | Registered: Jan 2004
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