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Posted 6/6/2016 11:35 PM (GMT 0)
Saw the LLMD today.
Results of Igenex tests:
IFA: 40 (equivocal)
Western Blot
IgM:
18kDa ++
31kDa ++
41kDa +
58kDa +++
IgG:
31kDa IND
41kDa ++
58kDa +
Her vitamin D was insufficient (28): the LLMD said it should be a lot higher.
Her ASO Titer was 539 (norm is <99).
I was nervous about the western blot results because they were not black and white but the LLMD said the results along with her symptoms are very suspicious and suggestive of Lyme disease.
Plus she has a chronic strep infection and her immune system is not functioning properly so the tests would be affected by this.
So I do feel validated but still have a fear of the mainstream med doctors.
I did get my daughter's pediatrician to also sign off on the test for PANDAS, which will take 6 weeks to come back.
I am happy to have an answer though and we will start treatment slowly with the following:
Banderol and Samento (build up the liquid dosage) herbs to kill the bacteria (1-15 drops per day)
Multi nutrients (vital nutrients) 3 caps a day
Vitamin D-3 (5000IUK/k1/k2) 1 cap a day
Del Immune V (2 caps/day 100mg)
The LLMD said his will likely be for a year then possibly antibiotics for 4-6 months.
It's weird - I feel happy about a diagnosis but still so nervous.
I really want to thank you all for your guidance and encouragement!
Please tell me what you know/think about her test results!
Thank you!!!
Posted 6/7/2016 12:01 AM (GMT 0)
I am so sorry your daughter has Lyme. I always feel so bad for kids that have it.
The vitamin D is often a problem with those with Lyme.
I know what you mean about the validation. It is good to know what it is but also a little scary.
Keep coming to the forum with any questions. There are so many good people on here who can help.
As you probably know, if she has Lyme she probably has some co-infections, but your LLMD will help you with that. I hope for the best for her! She is lucky to have a parent who is proactive in her care!
Posted 6/7/2016 2:03 AM (GMT 0)
Oh Twin, I also am one that feels badly for children with lyme. Not only do they suffer, but their parents suffer too.

I am so very glad that you have a LLMD.
Posted 6/7/2016 3:03 AM (GMT 0)
Thank you both! I was a bit disappointed because I asked the LLMD if we could have him write the diagnosis down and describe how it may affect my daughter at school so we could have a doctor's note for accommodations that she may need. His reply was "most people don't like the Lyme diagnosis." I understand that but it just makes me feel less secure that he would not put it on paper.
The Igenix result was "IND" for IgM and Negative for IgG so I know that mainstream doctors would likely not even consider the diagnosis.
I guess I'm just worried a about how to work with her pediatrician (if needed) and her school if we don't have a written diagnosis.
I'm happy with the treatment plan in place and just for the fact that we have some answers (she was misdiagnosed with a psychological disorder in March by our local children's hospital and she has been suffering for 10 months).
I just worry now about getting caught up in the controversy of Lyme disease because her lab results are not CDC-level certified and the LLMD is hesitant to put the diagnosis in writing.
He obviously believes it to be Lyme disease- is it typical of LLMDs to be so hesitant because of the controversy?
(I did read that some LLMDs consider 1 specific band as a positive confirmation of Lyme disease- especially with clinical history and symptoms, especially band 18, for which she is positive.) - I feel very sure that she has Lyme Disease- I guess I want to know how her results compare to others who know they have Lyme Disease.
The doctor's response to the school note just makes me feel a little insecure. Sorry for rambling on!
Posted 6/7/2016 3:07 AM (GMT 0)
On a good note, she only has a few days left of school and a break for two months of summer so at least we don't have to deal with school as she starts her treatment!
Posted 6/7/2016 3:12 AM (GMT 0)
I think there are only 12 states the currently have legislation in place to protect doctors treating lyme.

jemsekspecialty.com/legislation/

I think after you work with your LLMD for awhile he will give you something in writing. I think he wants to see how she does.

One can hope....
Posted 6/7/2016 3:14 AM (GMT 0)
I think the way LLMDs read results is the best way. If there's one lyme specific band then it's positive. There wouldn't be a trace of a specific lyme indicator if the person didn't have lyme. And then on top of that you add the symptomology.

I never under stood the CDC or even Igenex logic of it having to be a combination of certain bands.
Posted 6/7/2016 3:46 PM (GMT 0)
Congratulations on getting her diagnosed and getting her started into treatment!! I agree with the LLMD's assessment of her test results - add in Lyme symptoms and you must treat. I'm so glad you are following an smart doc!

I would say to save her treatment plan and show it to the school, along with the name of the doctor if there is any questions at the school, but hopefully she will be doing much better by the time school starts again!
Posted 6/7/2016 5:58 PM (GMT 0)
I'm sorry you're having to deal with this too. Our LLMD had certain wording they use which states DS has a multi-systemic inflammatory (might even have autoimmune in there) condition caused by multiple infections or something like that - the word lyme is not mentioned. We used it to get a 504 and the school has been especially sympathetic when we read off the infection names, treatments and symptoms (like 24/7 fevers even when at school).

Good luck and keep us posted.
Posted 6/7/2016 7:48 PM (GMT 0)

Twin2jlb said...
Thank you both! I was a bit disappointed because I asked the LLMD if we could have him write the diagnosis down and describe how it may affect my daughter at school so we could have a doctor's note for accommodations that she may need. His reply was "most people don't like the Lyme diagnosis." I understand that but it just makes me feel less secure that he would not put it on paper.
The Igenix result was "IND" for IgM and Negative for IgG so I know that mainstream doctors would likely not even consider the diagnosis.
I guess I'm just worried a about how to work with her pediatrician (if needed) and her school if we don't have a written diagnosis.
I'm happy with the treatment plan in place and just for the fact that we have some answers (she was misdiagnosed with a psychological disorder in March by our local children's hospital and she has been suffering for 10 months).
I just worry now about getting caught up in the controversy of Lyme disease because her lab results are not CDC-level certified and the LLMD is hesitant to put the diagnosis in writing.
He obviously believes it to be Lyme disease- is it typical of LLMDs to be so hesitant because of the controversy?
(I did read that some LLMDs consider 1 specific band as a positive confirmation of Lyme disease- especially with clinical history and symptoms, especially band 18, for which she is positive.) - I feel very sure that she has Lyme Disease- I guess I want to know how her results compare to others who know they have Lyme Disease.
The doctor's response to the school note just makes me feel a little insecure. Sorry for rambling on!

OH - I remember the psychological diagnosis, poor girl. That made me so furious. I am so very relieved that you are making progress with a more accurate diagnosis. You're such a good mom--this has to be difficult for you but you are moving in the right direction.

Your LLMD might actually be trying to help you with a diagnosis that might be less likely to cause any hesitancy from her primary MD, the school nurse, administration and anyone else including the insurance company. Sometimes MDs can be coy for other reasons, but this might actually work in your favor because many will find a more complex description of your son's issues more seriously than simply "Lyme".

In most other circumstances, you should feel encouraged to ask/find out/pressure MDs for information and facts. But in this case, if you can read info into his other actions, etc. it might be something better left out of the conversation so he's not forced to say something he feels he could get in trouble for. Trust your gut.

-p
Posted 6/8/2016 3:58 PM (GMT 0)
I can't thank you all enough for your input – it is so helpful!
My daughter already has a 504 plan at school because she was misdiagnosed with lupus back in January. The school has been very sympathetic and very helpful so I am grateful for that. I have been keeping them updated so they know that the Lupus was a misdiagnosis and they know that she was diagnosed with somatoform disorder but that I did not completely agree. I did cooperate with what the doctors recommended, which was to see a psychiatrist and a psychologist. We refused the psychiatrist's recommendation to put her on Zoloft but we found that a psychologist would be beneficial no matter what.
I had another meeting with the school last week and they know that we are seeking further testing and that she really has something else going on. So they are waiting till the beginning of next school year to put any accommodations in place if needed. I showed the district nurse her lab work, which does show that her white blood cell counts are wacky and her anti-nuclear antibodies are high plus her strep titers are also high and rising so I feel like she is on my side. I do understand the LL M.D.'s choice not to write it down and I do think he is a good doctor because he understands the need to start slow and I like that he's using alternative remedies first. It's a great idea to just word it in a certain way so when school starts if we need that diagnosis hopefully he will do just that. He did say that she has a chronic strep infection but I think the school might be worried about having her at school with that diagnosis so we will have to come up with something better.
Posted 6/8/2016 9:16 PM (GMT 0)
One thing I forgot to mention--

I wholly disagree with diagnosing your daughter's physical and physiological and psychological symptoms as psychosomatic and/or treating them solely with psychiatric medications.

However, I think it could be VERY supportive for her to have a relationship with a psychologist/psyhiatrist/counselor (in fact, I think it's beneficial for all of us). There is so much going on, so much confusion, so much suffering, so much energy wrapped up in her illness, so much frustration with treatment... I think having someone available for her to talk with could be invaluable.

I love that you shared info w/ the district nurse!

I wish you continued luck with this maze and please let us know how she's doing. Thankfully, it's summertime.

-p
Posted 6/8/2016 9:32 PM (GMT 0)
I am sorry to hear about what your family has to deal with and for your daughters suffering. All 4 in my family are infected and I have to continually remind myself that we are fortunate to have a diagnosis and know what we are up against. I too would recommend against using "lyme" in any of school paperwork and use terms like borreliosis, etc. Or multi-systemic immunosupressed...

And remember lyme is a clinical diagnosis.

I'm curious about the treatment your llmd outlines...I'm curious why doing antibiotics after the herbs? Or was that just a recommendation if herbs don't work?
Posted 6/9/2016 12:21 AM (GMT 0)
Smcalimni96:
The doctor gave us so much information that I was a bit confused about the antibiotics. I think it may be only if the symptoms persist. We see him again in 3 weeks so I can have him explain it again.
Thanks for the wording for the school- it would be awesome if she is doing so well by the time school starts that we won't need a doctor's note! Is that just wishful thinking? It seems like it could 't possibly be that simple... We'll see!
Posted 6/9/2016 9:44 AM (GMT 0)
It is possible so keep hope. My son's are asymptomatic although infected. Praying for you and your family.
Posted 6/9/2016 1:07 PM (GMT 0)
Hopefully treatment will heal. I am curious re PANDAS. You said you requested a test for this? Other the repeated strep & the label (& mirroring LD symptoms), it sounds like the diagnosis is clinical only?

www.nimh.nih.gov/health/publications/pandas/index.shtml
Posted 6/9/2016 1:57 PM (GMT 0)
Happyjo: There is a blood test called the Cunningham Panel through Molecura Labs. It's actually a few different tests for specific antibodies I think. I don't think they will dx PANDAS or PANS without it.
The rheumatologist at the pediatric hospital had mentioned it to me before we left on the day of discharge way back in December because I think he felt that my daughter was in a gray area. He told me that if symptoms continued I could decide if we wanted to do the test later. Of course it's $925 out of pocket but the lab tries to get insurance to pay $500. My daughter's new pediatrician had to research it and she told me in the past she would have turned her nose up at a test like this but she realizes now that she is continuously learning so she signed off on it.
I'm just grateful we have the Lyme treatment for now- I hope it will take care of all her symptoms! Her personality is different and the healthcare providers don't know her well enough to see that!
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