posted
I am new to the Lyme community here and there is one thing I am not sure of. I have been seeking for a LLMD for 2 months now.
I have found 2 so far thanks to this forum, and I am so very grateful. My question is, one of the doctors I have found is a Infectious disease MD, and works at a hospital about an hour away from me. I got his name through my state (MO) Lyme support group.
He is an ILADS member, will he see me without being CDC positive?
In February my EIA was 2.29 and IGG all (negative) and IGM positive on band 23. My GP sent my lab work to our Infectious disease doctor that is local, and he told my GP that there was no reason to see me based on that...he must use IDSA guidelines I assume.
But since I have found a Infectious disease MD that is a ILADS member, will he turn me away for not being CDC positive as well?
Posts: 36 | From MO | Registered: Mar 2016
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
The fact that the ID doc you are considering works at a hospital is even more reason to question going to him because if he doesn't follow the out dated guidelines, he gets in trouble at the hospital. So he is not free to treat as well as a good LLMD.
ID docs are notorious for not treating lyme based upon outdated guidelines.
Band 23 is lyme specific. It only means lyme, nothing else.
Keep in mind that some of the docs just get ILADS training but actually don't treat that way. Maybe they've figured out they're losing business. I personally will never see an ID doc again, ILADS trained or not.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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me
Frequent Contributor (1K+ posts)
Member # 45475
posted
I went to a doc like you described who "treated Lyme" and she didn't even exam me. Glanced at a pile of records and said I don't have Lyme. She gave me a 30 minute lecture on the history of Lyme, which I already knew. Said Lyme happens only up North.
Thank God I had educated myself enough to know this could be a possibility, but I had just begun realizing I might have Lyme and parents insisted I see "top docs".
Not medical advice: based on my experiences and reading Lyme literate literature and going to a Lyme literate doctor now, I would not go to the ID doc. I would run, run, run.
The only reason I am getting well is because a wonderful person on this forum recommended a good LLMD I am seeing.
Posts: 1431 | From USA | Registered: Mar 2015
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Sadly, some IDSA minded doctors who seem to want to tangle up patients by saying they are ILADS members and that they "treat lyme, oh, yes" can be disappointing and deceiving.
Some can just get their name on the referral list with no effort. Some may join or attend a conference but they are not ILADS "minded" though that's a term that is still inadequate to define what we need in a good LL doctor.
I often write ILADS "educated" but that has to be for real in depth, not just a trick. "Education" must go beyond even the formal training course. How they think, their approach, their sincerity all matter.
And who are their teachers? Who do they communicate with to continually learn more? This matters, too, but is harder to figure out.
Best to ferret that out before wasting time, money or hope.
Being an ILADS member is just the first thing to check. Then you have to determine if they are "for real" and actually walk the talk, so to speak.
There are many questions and many people to talk to before making an appointment.
Also see: WHY an ILADS LLMD or LL ND with the differences between IDSA and ILADS explained. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
the infectious disease drs here (all of them) are affiliated with a hospital and none will even see you unless you have a pos Eliza. or WB, but no one here will give you a WB unless you have a + Elisa or one that is inconclusive or something.
I do have hope that there must be one ID dr out there somewhere that will see and hear truth! maybe.... just maybe
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3592 | From Eastern USA | Registered: Jul 2013
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posted
Sorry, but this ID doc is not Lyme-literate, as band 23 is specific to Lyme, as Catgirl mentioned. You need a referral to a real LLMD, which you can do here by posting in Seeking A Doctor.
Posts: 13171 | From San Francisco | Registered: May 2006
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posted
I sent you the name & contact info of one of the top LLMDs who is in MO back in March. I recommend you contact his office a.s.a.p. to set up an appointment.
When you do this, ask if they have any cancellations or a waiting list. Patients have been able to get in sooner by doing this.
Posts: 9020 | From Illinois | Registered: May 2006
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
I'm going to chime in with a positive experience.
There are two doctors I know of who have hospital privileges and treat Lyme. One is infectious disease and the other is internal medicine. The ID doc gave me a month of doxycycline before testing for Lyme and I came back CDC positive.
I had no testing or referral when I first saw the ID doctor, just had a diagnosis of Lyme from another doctor for the rash. The rash was clear by the time I saw him.
I think these might be the rare ones according to the forum. It really depends on the doctor.
If your Lyme support group suggested the doctor, he might not be so bad.
Posts: 2839 | From California | Registered: Jul 2012
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posted
Hoping and praying, I have the info for the MO LLMD and I am making an appointment. But, I have been having some new symptoms that have been ailing me and have me worried for my life.
So I have been searching for some to see in the meantime, and praying that it helps.
I have Bell's Palsy, I went to the ER and they said it was just Bell's and not to worry. But what I have read about Bell's, that it should peak and not get worse. It looks like it's getting worse.
And a few nights ago, I started having painful foot spasms in my left foot. My foot was bending and Curling under. It looked really freaky...and scary! My dad rubbed my foot and leg for an hour...and it still curled. I don't know what to do.
Posts: 36 | From MO | Registered: Mar 2016
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posted
Hoping and praying, I have the info for the MO LLMD and I am making an appointment. But, I have been having some new symptoms that have been ailing me and have me worried for my life.
So I have been searching for some to see in the meantime, and praying that it helps.
I have Bell's Palsy, I went to the ER and they said it was just Bell's and not to worry. But what I have read about Bell's, that it should peak and not get worse. It looks like it's getting worse.
And a few nights ago, I started having painful foot spasms in my left foot. My foot was bending and Curling under. It looked really freaky...and scary! My dad rubbed my foot and leg for an hour...and it still curled. I don't know what to do.
Posts: 36 | From MO | Registered: Mar 2016
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posted
The ID doctor I planned to visit, isn't taking new patients, so I have to wait to see the LLMD, here in MO. Last I called he said September, and September is so far away.... I am going to hang in there the best I can.
Posts: 36 | From MO | Registered: Mar 2016
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Missy, you need to get a good magnesium. I'll bet that that would take care of your foot spasms and other issues.
Lyme patients are all advised to take magnesium. See these quotes from Burrascano's Lyme Treatment Guidelines:
"Magnesium deficiency is very often present and quite severe. Hyperreflexia, muscle twitches, myocardial irritability, poor stamina and recurrent tight muscle spasms are clues to this deficiency. Magnesium is predominantly an intracellular ion, so blood level testing is of little value. Oral preparations are acceptable for maintenance, but those with severe deficiencies need additional, parenteral dosing: 1 gram IV or IM at least once a week until neuromuscular irritability has cleared" (page 6)
"6. MAGNESIUM (required)
Magnesium supplementation is very helpful for the tremors, twitches, cramps, muscle soreness, heart skips and weakness. It may also help in energy level and cognition. The best source is magnesium L-lactate dehydrate (“Mag-tab SR”, sold by Niche Pharmaceuticals: 1-800-677-0355, and available at Wal-Mart). DO NOT rely on “cal-mag”, calcium plus magnesium combination tablets, as they are not well absorbed. Take at least one tablet twice daily. Higher doses increase the benefit and should be tried, but may cause diarrhea. In some cases, intramuscular or intravenous doses may be necessary." (page 28)
Order this magnesium right away and you will get it in 2-3 days. The mag you buy in stores is usually useless.
I hope this helps you.
I suggest you read the entire supplement list in Burrascano's Guidelines and start taking the supplements that line up with your symptoms. This could give you a LOT of relief while you wait to see a good lyme doc.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Thank you TF, so much. I'm going to get some. I believe it will help.
Posts: 36 | From MO | Registered: Mar 2016
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
Missy, I can't believe they said it was "only Bells"!! I mean SOMETHING had to be causing it. they said the same thing about my poor niece. and gave her steroids to help it.
did you get the mag? did it help? it really helps mmy cramps. I feel sometimes like I am having wasting disease or something- mine hurt so bad, but I spray the mag on and away they go within seconds.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3592 | From Eastern USA | Registered: Jul 2013
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WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
Missy, try to find a Lyme-friendly functional MD who can see you until you can get into the LLMD. Also, keep calling the LLMD and ask if they have any cancellations.
Posts: 1737 | From Virginia | Registered: Aug 2011
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I finally got my appointment set with the LLMD here in MO. It is set for September 1st. I have to tell you... I cannot wait! It seems strange to be excited about a doctors appointment.
But, I have to say I am. I have some hope now! Things may be looking up!
Thank you
Posts: 36 | From MO | Registered: Mar 2016
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I haven't got the Mag yet but I am going to get it. Yeah, the ER wasn't too concerned about my palsy. At first, the doctor seemed a little concerned and asked if I had any infections recently. I wasn't sure how to answer her, because I know how the hospital feels about Lyme disease.
But.. I went ahead and told her that I thought my Bell's was do to Lyme. Because I first noticed the Bell's two weeks prior to when I went to the ER. So, obviously it wasn't due to a stroke. She asked why I waited two weeks to come in. I advised her that the day I came in I was having one of the worst headaches I've ever had and my palsy looked worse that day for some reason...and that scared me enough to go to the emergency room.
Once I mentioned Lyme, she looked at me and said, Bell's Palsy is usually caused by Diabetes, Stroke, Herpes, and Lyme Disease. Which I had been tested for Diabetes and Herpes Simplex, and negative.Only thing positive was my EIA and the IGM band 23, on my WB.
She left the room, and when she returned she gave me a Rx for steroids and a anti-viral drug, and discharged me.
I didn't take the steroids at all because I have read too many bad things about taking steroids with Lyme disease.
I took the anti-viral for about 5 days but that was all I could take, it hurt my stomach really bad. Plus the anti-viral does not get rid of the Palsy..,it just (possibly) shortens the time frame of the Palsy.
Posts: 36 | From MO | Registered: Mar 2016
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