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Old 04-20-2007, 03:22 PM   #1
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Question contradictory diagnoses from LLMD's

Hey board! My son who has LD has a friend whose mom found out my son had LD and was seriously thinking that her son possibly has it too. She had his ped. order the tests first Elisa (neg.) then Igenex Western Blots, and the ped. consulted with Dr. Jones about the results and came to the conclusion by history and the Igenex report that the child has LD. But because she lives so far away she could not take her son to CT to see Dr. Jones so she found an LLMD in her state. The LLMD looked at her son's Igenex report and said that the boy does not have LD. Both IGM and IGG are neg. by CDC and Igenex. All bands are neg. on IGM except 39 kDa is IND. and 41 kDa is IND--IGG all bands neg except 41 kDa in IND. PCR is also neg. She asked me what I think and i am not sure, all of her son's other tests for autoimmune are neg. And he fits the Lyme diag. perfectly. I am not a doc. We don't have only IND's on our reports, so I don't know what to think. With no pos. bands at all what do y'all think of this report? thanks Sarah

 
Old 04-20-2007, 03:39 PM   #2
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Re: contradictory diagnoses from LLMD's

Hi Sarah. How long has her son had symptoms? I believe that Dr. Jones is the best Lyme pediatrician in the country. I would trust his advice if it were my child.

Which doctors believe that he does not have Lyme?

Remember that no Lyme test is completely reliable. Some people who have Lyme do not test positive. Band 41 is often the first to show and band 39 is Lyme specific.

 
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Old 04-20-2007, 06:54 PM   #3
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Re: contradictory diagnoses from LLMD's

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Originally Posted by ticker View Post
Hi Sarah. How long has her son had symptoms? I believe that Dr. Jones is the best Lyme pediatrician in the country. I would trust his advice if it were my child.

Which doctors believe that he does not have Lyme?

Remember that no Lyme test is completely reliable. Some people who have Lyme do not test positive. Band 41 is often the first to show and band 39 is Lyme specific.
Ticker,Yeah I know what you mean about the 39 and 41 bands and also about doc Jones. My son sees him every 3 months (loves him) and so does my friends daughter who has been seeing him for 4 years. Dr. Jones knows more about that stuff than most other LLMD's. I suggested that there may just not have been antibodies in that particular sample, and to retest. She said that the tests were redone by Quest labs and were all neg. then too. He has been having symptoms for several years, but he was diag. witth ADHD and some kild of Oppositional disorder he got so bad that they had to pull him out of school because of his behavior, he will be perfectly fine and then just go off suddenly (LYme Rage) he had been fine until he was 12. He had played sports with my son and now he doesn't do anything and was kicked out of school. when I met this kid he wa so sweet and respectful. He was tested last year by Elisa, which was negative, then Igenex and then Quest. I told her that knowing Dr. Jones I would trust his judgement over anyone else. I think she should retest through Igenex again since the significant bands were IND. Sometimes this disease is so frustrating because there are so many variances to it. As soon as my son was diag. I was so sure that this other boy had it too and it would explain so much he has gone through that isn't explainable and the last thing his mom needs in uncertainty after all she's gone through. These IND bands are something i just don't know about. Thanks for your help. Sarah

 
Old 04-20-2007, 07:32 PM   #4
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Re: contradictory diagnoses from LLMD's

Hi Sarah. I hope his mom will reconsider trying treatment. There is no completely reliable test. It is frustrating but true. In my non-medical opinion, if the band is not negative then it is positive. IND means somewhere in-between.

You may ask her to read the Lyme Disease Research Studies Overview of Neuropsychiatric Lyme Disease. It lists the neuropsychiatric and cognitive problems of children and adults who have Lyme disease.

I am glad your child is seeing Dr. Jones. Did you know that his patients can stay at the nearby Ronald McDonald house at a very reasonable price?

 
Old 04-20-2007, 08:15 PM   #5
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Re: contradictory diagnoses from LLMD's

yes I was told that by my friend who's daughter also sees Dr. Jones. It is about 15.00 a night and is within walking distance from his office and the beautiful Yale Campus where my son hopes to study medicine and become an LLMD someday. Angel wings also offers free flights to Dr. Jones's patients, he is a wonderful, caring man that we truly adore. Most of the symptoms that my friends son has are behavioral and they come and go so quickly. But he also has the joint pain and fatigue, balance problems. My son doesn't really have the behavioral problems his was mostly fatigue, joint pain, OCD (counting) and he was seeing phantom images that scared him so badly. He had the brain Spect and MRI in Ct and it showed lyme in his brain it has affected his school work dramatically. But my friends son has only just had the initial testing because she works and can't take the time off to travel. I'm too sick with my own LD to work, so I can take my son to CT evry 3 months. I will keep pushing her to keep researching everything she can. And hopefully she will get him tested again. And get him to Dr. Jones office. Thanks, Sarah

 
Old 04-21-2007, 09:59 AM   #6
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Re: contradictory diagnoses from LLMD's

IND is intedterminate----based on his blood tests he doesnt had Lyme disease.

However, Based on Dr. Jones's clinical expierience of treating 10,000 sick kids (I believe about 75% are cured)...He believes that your friends son has Lyme...(but has never seen the boy either...right?). I wouldnt doubt doctor Jones....AND really....there is only one way to find out--TREAT HIM! See if he gets the "herx" reactions, the worsening of symptoms....and improvement.

ALSO---have him get neurological testing, neuropsychological testing and a Brain SPECT scan can help with the diagnosis to confirm Lyme disease too...

I hope he feels better and responds to treatment

 
Old 04-21-2007, 10:32 AM   #7
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Re: contradictory diagnoses from LLMD's

This is basically what I have told her too. But I am one person telling her this, that's why I wanted more input from y'all. thanks so much. I think that she is just so scared, LD is such an awful disease I really think she wants to believe that her son doesn't have it and is looking for any reason to say he doesn't. I completely trust Dr. Jones also, that's why we fly all the way to CT to see him. And that's why I recommend him to anyone who has a child that may have LD. I think unfortunately money has alot to do with it too. I was honest about the costs of the MRI's, Spects, labs and visits with her. My son also had the neurosphycological testing it was $1500 up front. But if your child had Cancer would you not treat them because of the cost. It's just unfortunate that there is now specific straight forward test that is a definate yes or no. Too many people are told too many times that they don't have LD, me being one of them years ago when my Elisa was Equivocal and my Rheumi spent 8 years telling me I didn't have it and one day I would be pos. for Lupus. I spent those years searching and wondering what was really wrong with me. And then with my son for 6 years. My son has shown drastic improvement with Dr. Jones treating him for 6 months. I don't want to see anyone suffer needlessly with LD thinking they don't have it. I will keep on about it. Thanks, Sarah

 
Old 04-21-2007, 11:22 AM   #8
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Re: contradictory diagnoses from LLMD's

I know that obviously any parent wouldnt wANT their child to have Lyme...that is why you pursue every OTHER diagnosis before Lyme is diagnosed....

I have the most severe case of Lyme that any of the LLMDs here have seen (Jones reffered me to my LLMDs) Because I was 17 at the time (I am 19 now)...and He didnt want to take my case because he is old, and I was old for a kid...and he said my case was so severe and would need to be followed for 10-15 years or more and he would most likely not be in practice long.

He referred me to 4 LLMDS. Of those 4 1 treated me for a while than said I was too sick...etc...that pattern continued through the 7 TOP LLMDs here in NY and CT! All because I believe they are afraid of taking on a patient who cant walk, has tremors, seizures...I am a risk for them. And being a lyme doctor is scary.

I wouldnt let MONEY get in the way of my childs health! I have had testing at every lab...all positive results. The testing and re-testing has probably added up to over 10,000 over the years.

I also had Neuropsych. testing, and SPECT scans. Those also were expensive.

I have done a lot of IV treatment (the only treatment that works for me) and that is $1,500 a week! Bc of IDSA guildelines only 4 weeks are covered and most lyme patients only respond to a minimum of 6-9 MONTHS.

So yes, we have paid a lot of out of pocket expenses, I am just happy my parents have the means to do so---but What are they going to do---NOT treat/test ME and let me just sit here and suffer?? You have to do it....I really hope that your friend realizes that.

Jessica

 
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Old 04-22-2007, 11:06 AM   #9
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Re: contradictory diagnoses from LLMD's

Hi , Sorry to hear about this difficult situation. my lyme doctor also had a HNK 1 panel ( CD57 ) done with my blood. Igenex got the western blot testing and Lab Corp was sent the HNK panel 1 ( CD57 ) My blot was positive for IGM but neg for the IGG by Igenex. My CD57 was a 22 which is considered positive for lyme or coinfections. Please read up on this CD57 testing online . From what I've read it is possible for chronic lyme sufferes ( I am 2 prior negative tests for lyme) to test negative since your antibodies against the disease can be quite low after fighting the disease so long. The western blot tests for these antibodies. This is why my Lyme doctor runns others with the blot. Hope this helps and Take Care

 
Old 04-22-2007, 03:25 PM   #10
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Re: contradictory diagnoses from LLMD's

Thanks for the info. I know that with both my son and I our LLMD's tested for CD57, mine was 26 and my son's was 39. They use that as one of the main diag. with us. Along with the Igenex bands. Her son hasn't been tested for that either. My son's ped. doc here is studying LD because of all the kids that are coming up pos. with it. We live in a major dear hunting area. I am going to get her to take her son to him, he works with Dr. Jones and with Dr. Forrester and he will do the appropiate tests that her son needs without her having to fly to CT first without anything but the Igenex report. But this doc isn't completely knowledgable, he's just learning, he still tried to give my son a steriod shot 2 months ago for bronchitis, so I still am only trusting Dr. Jones for treatment but using this doc for routine exams that don't have to do with LD, but he will get on the phone with Dr. Jones before he discusses any LD testing with his patients, and then he sends them up to see Dr. Jones. It is great to have found a ped. doc here that is willing to initially test kids by Igenex and refer them to dr. Jones, that is one foot forward for us Lymies. Thanks for all your help, Sarah

 
Old 04-23-2007, 07:23 AM   #11
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Re: contradictory diagnoses from LLMD's

hi...is the doctor treating your son in texas...I know of a boy in texas who flies to boston for treatment it would be great if there was a doctor he could see in the interim though!

 
Old 04-23-2007, 09:23 AM   #12
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Re: contradictory diagnoses from LLMD's

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Originally Posted by Beachgirl0916 View Post
hi...is the doctor treating your son in texas...I know of a boy in texas who flies to boston for treatment it would be great if there was a doctor he could see in the interim though!
My son sees Dr. Charles Ray Jones, in CT. we were going every 3 months but it is just too expensive to fly up there that often plus he misses too much school, so now we are just going during summer break and Christmas break. I found an LLMD in Texas, but doesn't treat minors. We are on a waiting list to see an LLMD in Louisiana, they told me probably sometime in June. Unfortunately several LLMD's left Texas because they were being harrassed and so everyone flocked to this LLMD in Louisiana and he flooded with Lyme Texans. The doc I am seeing is not really taking new patients for lyme she has a pain clinic, but I convinced her to see me and she agreed to keep up the same protocal my LLMD in Ct had me on. basically with my son I have to take him to his regular doc in between seeing doc Jones and basically tell him what I need done, and luckily he does it. He is learning, but also trying to run a ped. practice at the same time, he is not in clinic that has several doc's him and his wife own this practice and they are the only doc's there, and probably the best ped. in our town so they are bombarded with patients all the time. His wife is mentioned as a ped. LLMD on the lyme registry that PJ Langhoff sent me, but she doesn't treat the lyme she refers to Dr. Jones and Dr. Forrester. All the kids I know in Texas see Dr. Jones, he is the best and I wouldn't personally want my son to see anyone else full time. You could let the boys mom know that there is a LLMD in Pineville LA (Dr. Forrester) that will treat children, but he has a 4-5 month waiting list, and from what I have heard he doesn't spend the amount of quality time with the kids like Dr. Jones does. Dr. Jones usually spends 1 1/2 to 2 hours with his patients, he is very sincere, caring and thorough. He explains everything and doesn't rush you. This man loves all the kids like they are his own. I honestly have never met a more caring wonderful man in my life. I wish that we lived in CT so that I could have him see my son more often. Plus his staff is the most helpful, patient staff I've ever met, and you know we see alot of doc's before getting a diag. And most of them are obnoxious, rude, arrogent, and could really give a d--- about anyone. If the boy you know lives by victoria he could see Dr. Maya Pathikonda in between going to Boston, she will work with the LLMD's and she is researching Lyme so that she can treat it herself. Good Luck, Sarah

 
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