posted
My son just turned 10. He's been on oral antibiotics since he's 7 1/2 year old when he had arthritic symptoms. His pediatrician told me he had arthritis. His bloodwork indicated that his CPK was off (which is a muscle degenerative disease) his ana was positive (inflammation). Took him to docs including lyme docs that were not as knowledgeable as you would expect and gave me antibiotics to "satisfy the moms request". His vision got worse over the past 6 mos, but that has been attributed to growth spurt. He's on oral zithromax with plaquenil and I have him going to a doc who knows other than traditional diseases to look for. When the school nurse called and told me his hearing is declining, took him to an ent. Sent him for an mri, which showed no abnormalities. Problem is, this is the worst I've ever seen him. His hearing is not good, he has new glasses and he said around his eye is blurry, not the middle and in the store yesterday I caught him blinking big time, squinting and the tears were streaming down his face. I asked him what's wrong and he said the light was bothering him. A few vials of blood were taken last week and I'm waiting on results. He had positive lyme western blot Igenex a few months ago, the the banns were fewer than the lasat time. I think he's getting worse, not better. I know everyone knows hell with this disease - I live it. When it's your kid, you live it through them.
Sorry if this is long, just did anyone have any similar experiences, and if you did, how are they now?
Good luck and God bless - Cigi
Posts: 320 | From Upstate, NY USA | Registered: Dec 2004
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posted
So sorry you & your son have had to deal with so much. Don't know how much you know, so I'll just throw out a couple ideas.
Several years ago, my grandson (now 13 yrs) had major changes in his eyes in one year. Lyme disease can cause lots of eye problems, but Bartonella can affect the eyes, too. His Bart tests have been negative, but Dr Jones still hasn't ruled it out.
Has your son been checked for co-infections? Sometimes, when no progress is seen, the problem can be co-infections like Babesiosis, Ehrlichiosis, & Bartonella.
Each co-infection responds to different meds, so the treatment for Lyme will not eliminate all the Tick-Borne Diseases (TBDs).
"Diag Hints & Treat Guidelines..." has info on Co-infections. www.ilads.org/burrascano_1102.html If you don't have a copy, print one. It's about 32 pages of excellent info.
pages 4-5 & 20-24: Co-Infections
Another point - It sounds like he has a LLMD since he's taking Zithromax & Plaquenil, but I was wondering if his dose is strong enough. (My grandson is presently on Ketek & Plaquenil).
Have you consulted Dr Charles Ray Jones, the Lyme Pediatrician in New Haven, CT? Phone 203 - 772 - 1123 Fax 1 - 203 - 772 - 0682 He has given permission for his contact info to be given here.
They're so busy, it's difficult to get through on the phone, but I've heard you can get an answer to a Fax sooner.
The same info is in the excellent brochure, "ABCs of Lyme Disease", available through the Lyme Disease Association in NJ (click name on the left side of this page). I highly recommend you contact them for a copy.
Is your son taking enough acidophilus? If not, there's a possibility of systemic yeast infection, which has lots of the same symptoms as LD.
In "Diag Hints...Guidelines" pages 24 & 29: info on acidophilus
Be sure to have 2 hours between acidophilus & antibiotics - before & after - or the acidophilus won't be able to replenish the good bacteria in the digestive tract.
Concerning responses - Lots of people here on LymeNet have eye problems & have difficulty reading long paragraphs. You may get more responses if you edit your info & hit the Enter key every 4 or 5 lines to put spaces in the text. (Edit - click on the pencil above your post)
Makes it a lot easier for the eyes to focus & read.
Will check back in the morning to see if you've responded to my questions. Of course, answers are not required.
[This message has been edited by cbb (edited 09 May 2005).]
Posts: 4638 | From South Carolina | Registered: Mar 2001
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posted
Thanks for your response cbb. He was checked for co-infections and nothing came up. I didn't think of yeast because he takes acidophilus, but maybe it's not enough. You brought up alot of things that are for thought. Also, for the tip of not writing books in one paragraph. It was mentioned to me before, but I jut get carried away when I start.
Again my thanks. Feel well.
Cigi
Posts: 320 | From Upstate, NY USA | Registered: Dec 2004
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posted
I also have a son with Lyme. He will be 10 this summer. I know exactly how you feel. Its different when your child has Lyme and coinfections. As a parent you should be able to protect them but his is so unpredictable. Many nights I've sat down and cried not for myself (I have Lyme also) but for my son. I try to remind myself that its a good thing that I found out now. What if you never found out and he had something serious happen to him as an adult because he had been untreated for so long? CBB gave you a lot of great info. I know someone who lives here in Maryland whose child sees Dr. Jones. He is very good. I also know some others that see Dr. Bach in PA. We did for a few months but he was too expensive. The eye problems are what first sent me to a doctor a few years ago. Of course I wasn't diagnosed until just this year after various doctors and after I started showing other symptoms. Good luck. Your not alone. Its doesn't seem quite fair that children should ever have a sickness. They are so innocent. Does your son have any friends or classmates that are infected as well? My son has two friends that are infected so it doesn't seem abnormal to him.
Posts: 547 | From Maryland | Registered: Mar 2005
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lla2
Frequent Contributor (1K+ posts)
Member # 2364
posted
please don't go by testing . if your son is that sick he has coinfecitons..guarenteed. YOu need to get him into see dr. jones in ct. he saved my son's life.
do not wait any longer or your son could end up with permanent danger, or even death. this is serious. go to someone who knows kids and lyme. this is very important. YOu have the numbers.
he needs to be treated, even if his tests show negative. some of hte sickest of us have negative titers. it's because our immune system is too tired to make antibodies anymore...so nothing shows up...
Please, please don't wait.
Lisa
Posts: 4713 | From saunderstown, ri Usa | Registered: Apr 2002
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kgg
Frequent Contributor (1K+ posts)
Member # 5867
posted
You mentioned new glasses and the fuzziness around the edges. I had this with new glasses and lived with it for a year. Made me feel dizzy and tired. When I finally went to a different eye doc they said my eyes had not changed. But they showed me the difference in the type of lenses used.
The bottom line is that the lense was causing the fuzziness. I ordered new glasses with a higher grade of lense and that fuzziness around the edges is no longer an issue.
Also, it is not unusual to be given the wrong lense prescription. Labs can make mistakes. If I were you, I would start with a check back on his new glasses.
posted
I agree with lla2 JOnes cured both my girls....and yes he definetely has a co-infection once you see Jones you will feel relieved and your son too.
Posts: 983 | From The sky | Registered: Feb 2005
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posted
Sorry I forgot what's your son's plaquenil's dose?
I took plaquenil for 3 years and because of my low weight I had problems with my sight it was reversible...it was like blurry cloudy greysh areas in my visual field.
posted
Cigi, so sorry to read about your son's many complications from lyme!
Cigi and Dunkirk, please go back to your original posts here and use EDIT/pencil. Break up your long text to 6-8 lines of text only and DOUBLE space between space for us late-stage lymies who want to try to help when possible!
You can edit your text any time; but NOT TOPIC LINE....so please be as specific as possible; eye problems & co-infections. You will get many more replies if you do this since there are 40-50 daily posts/replies. We pick & chose.
Bettyg, Iowa
Posts: 1 | From US | Registered: Aug 2015
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posted
My son is on 200 mg plaquenil. Waiting on test results to see what's going on. Thanks much for your input. I went to Columbia to interpret my spect scan and knew as much as when I went in with. Lyme or ....???
I'll keep you posted in my son. As for me, 5 mos of rocephin so far, 5 gallstones with no pain and a mind that goes in and out with irregular heart rhythms. Need I say more. Good luck with all and thanks for your thoughts and suggestions.
Cigi
Posts: 320 | From Upstate, NY USA | Registered: Dec 2004
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liz28
Unregistered
posted
Plaquenil + zith seems incomplete. Since your son is so young, could you maybe add in a low dose of ceftin, and see if it produces changes after two weeks? Or could he try a lower dose of ketek? Or even doxy, since it's such a mild drug.
Supposedly, Dr. J uses zith + rifampin for bartonella. That is a serious illness, and deserves to be hit hard. But in a child, it would probably produce noticeable mood swings, especially towards rage.
lla2
Frequent Contributor (1K+ posts)
Member # 2364
posted
it does..my son had horrible symptoms of rage and anger with bart...dr. jones put him on rifampin and zithro for 6 months..completely cured him of it..no more problems with that coinfection...also he was treated for babs and lyme as well..2 years of treatment..now in remission, playing baseball etc..doing great. no furhter problesm..
Lisa ashton
Posts: 4713 | From saunderstown, ri Usa | Registered: Apr 2002
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posted
I'm wondering if I should take my own son to see Dr. Jones. We just started treatment in march for him and he seems to be doing okay so far.
I just switched Lyme doctors however so maybe I'll wait awhile.
He does forget a lot of things and his father gets on him a lot. When I try to explain that the Lyme and coinfections will cause our son to do this he tells me I'm just making excuses for our son. Does anyone else get this?
Its really annoying. I think my son's teacher may be the same way. My son is a well behaved child and is so much more resposible that some other children that I don't think its fair to give him a hard time.
Its easy to forget that he is sick. He doesn't appear to be sick physically as most of his problems are cognitive.
Where in Conn. is Dr. Jones located?
Posts: 547 | From Maryland | Registered: Mar 2005
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Cigi and Dunkirk, please go back to your original posts here and use EDIT/pencil. Break up your long text to 6-8 lines of text only and DOUBLE space between space for us late-stage lymies who want to try to help when possible!
Yes, please! Or at least do this the next time you post. It's really hard to read.
cigi....You should make sure your son has no yeast. Yeast can make your eyes water alot. [didn't know if he was crying real tears or his eyes were watering]
I agree that he needs to be checked for co-infections...or better yet....just get him treated for them.
Also, plaquenil can cause eye problems as Lymeblue said.
posted
I would check out the MP [Marshall Protocol.com] Reports from the latest Lyme conference, indicates some Drs. are having good success with children. I would then get a Bowen test, for quantitative [ bacteria loading] this can be used for success analysis. Bowen also does co-infections, all for 250.00 tax deductable, as a donation. It seems that some children do well starting at about a few months on the MP.It is worth checking it out. Good luck.Check out the conference notes for some details.
Posts: 512 | From Memlo Park, Ca USA | Registered: Sep 2002
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posted
Thanks for all your suggestions. Going to a neuro audiologist to see if he can see anything wrong and back to our doc to see how his recent bloodwork came back being it changed and seems worse. Will check out those sites in the meantime.
Good health and thanks again,
Cigi
Posts: 320 | From Upstate, NY USA | Registered: Dec 2004
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Lyddie
Unregistered
posted
Both my daughters had eye symptoms as their first sign of Lyme, one of them very much like your son (also arthritis, positive ANA's all around in our house). Antibiotics did help, esp. tetracycline.
I could be wrong but I believe that Lyme bloodwork, esp. the IgM, tends to fluctuate. In other words, it goes up and down a lopt, so I don't think you can say that he is better or worse based on changes in his Western Blot. Anyone out there, please correct me, but I would be careful not to draw conclusions from these changes unless someone can tell you otherwise.
Anyway, you're not alone, and your son is bound to improve...
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