posted
I haven't posted in a long time, because My son's symptoms are mild recently. However, we took him to a doctor suggested here on this site, and he was tested by igenex. The results came back positive. 5 of the 6 bands were positive (not sure what that means). He does not have any other co-infections. However, his numbers are high enough as to be reportable to the CDC. Again, not sure of the significance of this fact. He's doing well, other then a slight cough. They're going to put him on some natural remedies for six weeks and then hit him hard with various antibiotics. Oh, a point to mention, he was infected two years ago and treated at that time. He relapsed in January of this year and was quite sick for most of the next four months. What does all this mean? We forgot to ask the doctor if this means our son has "chronic lymes". Does he? Our llmd says he's treated about 70 lyme patients and only five have been cured. Those are discouraging statistics. We'd so appreciate any insight as we feel like we are completely in charge of his care. We have several friends who are family physicians who have watched our son's case unfold. They readily admit that they don't have any clear answers, and are learning a great deal from the information that I pass along to them. Oh, I guess there was one doctor we know who had clear answers. He was our original primary care doctor. He says our son absolutely, positively does not have lymes. He also said we should condsider the possibility that his symptoms are phsychosomatic. I almost wish he was right. The problem is, I don't want to become a lyme expert. I don't want to spend my time hovering over lyme web sites in the middle of the night trying to patch together pieces of infomation that may be useful to help our son. I suspect none of you want to be experts either, but you are. So, thank you so much for the invaluable information you share.
Posts: 23 | From Prairie du Sac, WI USA | Registered: May 2005
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quote:Originally posted by mik: He says our son absolutely, positively does not have lymes. He also said we should condsider the possibility that his symptoms are phsychosomatic. ...................
The problem is, I don't want to become a lyme expert. .
the dr [DUCK] who said "Lymes" has proved by saying that instead of LYME that he knows NOTHING about it! So don't listen to one minute of his garbage!
Your son can get well, or at least get his life back. Perhaps the dr who has cured only 5 people is not the expert you need.
I'd seriously consider finding an LLMD, a dr who has treated hundreds or thousands of Lyme patients!
don't want to become an expert? You'll have to if you want your son to get well.
posted
I didn't want to become an expert either, but we have no choice. I'm glad I did because I now know that I am doing the best I can for my child (and myself).
You are your child's advocate and you need to educate yourself because this disease is complex and doctors all have their own opinions on diagnosis, testing and treating.
You, like me, will have to do the research in order to make decisons about your childs healthcare.
It stinks, but that is the way it is right now. I do what I can to share my knowledge and support legislation so maybe in the future others don't have to go through this nightmare.
Some guidelines from Betty/others on using this message board:
* Do NOT use all caps when posting; it's hard on our eyes. But I know one of our members has macular degeneration, and all caps is what she can see & read so exceptions like this are acceptable for good reasons.
* We chronic, late-stage lymies can NOT read long paragraphs. So please limit your paragraphs to 6-8 lines max of text and double space between paragraphs.
* You can EDIT your text comments anytime. You can NOT edit your subject line so please make it as specific as possible instead of ``help, question'' etc. in order to have more readers/replies in trying to assist you. There are between 30-40 NEW/replies to post daily so we can't read all the posts on our limited time here...thanks for understanding.
* If you use the ``quote'' icon, please DELETE [B] bold at the beginning & ending of the quote. This makes it easier on our chronic, late-stage lyme eyes.
* To just reply without quoting, go to the top or bottom of screen in the black & white area to reply or post a new topic. Many of us couldn't see it when we 1st started posting. Thank you for helping us all out!
Bettyg
Posts: 1 | From US | Registered: Aug 2015
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janet thomas
Frequent Contributor (1K+ posts)
Member # 7122
posted
I'm afraid you will need to learn a great deal. From what you said it seems your son has chronic Lyme. NP40 and cafe 67 see a LLMD north of Milwaukee. I suggest you email one of them. I can ask cafe 67 to email you the dr info-what's your email?
Posts: 2001 | From NJ | Registered: Mar 2005
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So sorry to hear about your son. My eight year old daughter also has lyme and she was CDC positive too. She was treated for 8 months so far and is finally doing so much better.
Yes it does sound like your son has a chronic case like my daughter.
She had horrible joint pain, stomach problems, headaches, flu like symptoms and a long list of other symptoms. It's so important to be treated by a knowledgable LLMD who understands lyme...it's the only way to get well.
My daughters only symptoms now are occasional stomach aches.
I made the rounds to every doc in this city including a rheumatologist and Infectous Disease doc...they were the biggest waste of time. Neither one of them would believe she had lyme. The ID doc said we'll treat her with 3 weeks of abx but I don't think she has anything serious.
You know your child better then anyone and
Feel free to email me if you have specific questions and hope your son is feeling better soon!
Posts: 738 | From Colorado | Registered: Oct 2004
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Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
I would not consider a doctor with such a low success rate as someone I'd want treating my child. On the other hand, your PCP sounds like a real idiot.
I think you may have to expend the effort to get more information for your son's treatment and to find a better doctor.
Good luck to you both.
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
Getting proper treatment with the right antibiotics is so important. Our son has been treated for two years......but we just recently saw Dr. B. in New York - Long Island - and he said that he has not been treated properly and he needs atleast three years of treatment to battle this.
If only we would have seen someone who has treated thousands with lyme. If I could turn back time I would have not just listened to two llmds here. (They are, I am sure, trying their best.).........but I wish I had put my son in the best hands possible when he was diagnosed in 8/03.
Look for a highly recommended doctor. Dr. B. spoke highly of Dr. C. in PA. You can find info on this pediatric doctor by looking at www.lymepa.org (or .com). Go there to read a great powerpoint that is there outlining pages of pediatric symptoms/problems.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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janet thomas
Frequent Contributor (1K+ posts)
Member # 7122
posted
Hi Valy,
I bought the video of Dr C's presentation to the LDA of sePA. After watching this I called Dr C's office-I want my duaghter evaluated. tThere is a wait list of 6 months. I'm on the list.
Thanks for the tip about the list of ped symptoms-I'm going there now.
posted
Dang Mik, I don't think any of us wanted to become Lyme experts and don't think we could even if we wanted to, there is so much unknown about this horrible disease.
Most of us HAD to become educated or a loved one or one's self or just someone we know would have eventually ended up in a wheel chair or worse.
If you want your son to get well and have a life you better do some late night reading and find a GOOD LLMD.
If I sound harsh it is because I was one of those people that listened to my Primary Care Doc. No no, your daughter doens't have Lyme he said. Then did an ELISA test to prove she didn't.
Well, it is now 14 years later she is 24 now and her life has been taken from her by a stupid tick that bit her on the back when she was a little girl. I know a woman that has a daughter that had heart attacks and a stroke at 14, she became non-verbal. She listened to DUCKS like the one that told you your son doens't have Lyme. Just like so many of us have.
We ALL had to become somewhat experts, (whatever that is) on Lyme. Even when you find a good LLMD you have to take responsibility for your Son's or your own care to a point.
If I sound angry, yes I am angry, I am angry at the ducks out there that close their minds to the obvious. I am angry at the 20 or more doctors my daughter saw and the 100's of tests she went through when all they would have had to have done was look at her symptoms and do a Western Blot test on her and most of all EDUCATE themselves.
Good Luck Mik and please for your Son's sake get him to a GOOD LLMD with a good track record. There are some very good LLMD's out there. You might even have to travel like so many of us do, but it is worth it to save your son.
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