posted
I found out I had Lyme this past summer. Test were done by a well known Lyme doc. I had my kids and husband tested at the advice of my doctor. We all came back positive for Lyme. My husband, my self, 10yr and 8yr all positive. I am the only one with any symptoms at all and the only one that has ever had a tick bite. Doctor says that they are "carriers" of Lyme but are not reacting to it. I don't know enough about Lyme to know if that is right. Doctor says that I will be in treatment for 18months and my kids and husband for 12months. I pay my doctor $450 per visit per person. Insurance only pays a small amount back to me. We are all supposed to see her once a month for how long we are on treatments.
How do you know if you are being taken advantage of? Is IGenex lab reliable in their findings? Are there doctors out there taking advantage of people with Lyme? How do you get a second opinion when there isn't another Lyme doctor within 100 miles?
Sorry for all the questions. I am not wealthy by any stretch and just me being sick has been a huge drain. Four of us sick will be so much harder.
Posts: 8 | From Lexington, SC | Registered: Apr 2009
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onbam
Unregistered
posted
Our personal experience tells us this. We get worse doing what the CDC recommends, and better doing what LLMD's recommend.
And then there's the science. will pm
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posted
Sarah, an LLMD would not tell you how long your or you family's treatment will be. Duration of treatment is not predictable.
As for your doctor saying that your family members are "carriers" of Lyme but not reacting to it...well that's one thing I've never heard.
Please go to the "seeking a doctor" forum and ask for information on an LLMD in your area.
-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
---Eleanor Roosevelt Posts: 748 | From somewhere | Registered: May 2010
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Your children test positive for Lyme, but do not have symptoms.
From what I understand, Dr. J. does not recommend treating children if they do not have symptoms.
If your husband does not have symptoms, then his immune system is fending it off. He can take supportive supplements to help keep his liver and immune system in good shape.
And of course, you as the mother can make sure that your family gets good nutrition and plenty of sleep, both necessary for a good immune system.
Carol
Posts: 6956 | From Lancaster, PA | Registered: Feb 2004
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You may find that there ARE other doctors in your area by posting a request for a list.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Yes, Igenex is a very reliable and top-notch lab. However, even the very best tests can miss these stealth infections that hide. But, in your case, it seems the Igenex tests came back positive (?) - and with symptoms and history, that all adds up.
I would not treat family members who do not have symptoms, other than some good basic support supplements and good nutrition, etc.
Considering the fee schedule (and no family discount), I would see if you could find another ILADS-educated LLMD. That sure does seem steep.
If you've been ill for a while, 18 months does seem a reasonable time frame, though. Much depends on individual response but between 6 - 18 months is a fair estimate. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
Anyone looking at my family from the outside would have said I was the only with symtoms, the only one who was sick.
But I learned that my husband and kids were experiencing symptoms.
My husband had, a few times over the years, felt numbness in his fingers or vibrating in his thigh. He had 5 years when he hardly slept (we thought it was from work stress) and although he had many worsening gut symptoms that seemed like Crohn's he always tested negative for it.
My kids both had (have) Bartonella rashes (google bartonella rash for pics) and my daughter had terrible acid reflux which, over the years, got her a diagnosis of Barrett's esophagus, a precancerous condition. She was 13. My son had serious air hunger a few years ago but it has gotten much better. Barely noticable now.
Because of my experience, I recommend that you learn as much as you can about lyme and coinfections before you decide whether or not your family has symptoms. And if they truly don't have any symptoms, don't treat.
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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posted
Are there doctors out there treating Lyme with questionable motives? The answer is yes. We are the vulnerable and anytime that you have vulnerable people you have people that prey on them, especially if there aren't many caregivers to fill the gap.
Is Chronic Lyme real and are there doctors who treat it correctly? Yes.
I think the biggest problem right now are doctors who undertreat Lyme, trying to stay under the radar.
[ 10-05-2010, 09:31 AM: Message edited by: John S ]
Posts: 743 | From New York | Registered: Apr 2009
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
My LLMD won't treat those who do not have symptoms. After all, treatment is until symptoms are resolved, so those who have had exposure but are not sick have already resolved the illness.
Our immune systems are designed to protect us from bacteria. I believe some people's immune systems are strong enough to fight off Lyme Disease, thus some test positive for antibodies yet are not ill.
I would be sure they are not having symptoms as symptoms can be subtle. We treated my daughter who had few symptoms with a trial run of abx. She responded so well, we treated her until all her symptoms resolved and she feels much better and does much better in school.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
I don't think you really know whether you are the only one with a tickbite. Juvenile ticks are very small and even the adults can hide in hair and other inaccessible places and never be seen. So, unless you passed it to the children in utero and your husband in sex, then your family has all been bitten at one time or another. Symptoms may lie low for quite a while or appear to be something else.
Most lyme docs start out with a larger charge the first visit because it takes a lot longer. Then the charge drops for subsequent visits. If you can't afford this then you will probably have to go elsewhere. Maybe bring this up with the doctor, because it is a large amount of money for the whole family. That is, if you can't go elsewhere. Say that you will treat for now, holding your options open for the others later. If you want to go every month the first couple of months, and then space out visits less often....see if that will fly. Lyme patients need a lot of support, and doctors do not want constant calls from panicking patients.
This sounds like a relative newby doc to me, because of the treatment for people without symptoms. But as others have said, be sure there really aren't any symptoms. If, in the future, some do crop up because something causes the immune system to fail to keep it in check, then treat.
I have heard of other good doctors giving time periods for treatment, probably so that the patients will understand that it will take quite a while. Just to get them mentally prepared.
And please do not say whether your doctor is your state or elsewhere on a public forum!
Posts: 8430 | From Not available | Registered: Oct 2000
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