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Son diagnosed with lyme

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Lyme Disease
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Posted 7/30/2013 8:06 AM (GMT -5)
New here and looking for support.  My sons lab work came back positive for lyme.  Took him to the drs for ongoing headache, and neck pain, that progressed into severe pain in his thighs and back.  He would wake up crying and was unable to sleep for several days.  We were sent for bloodwork and then told to wait and basically just to deal with the pain.  

6 days later got a call from the receptionist -- positive for some lyme test doxycycline called in  100mg 2x a day for 3 weeks.  He was bit 4 years ago but they did nothing for him then  nono    Other than that we don't know of any other tick bites.  He is 15 and just in so much pain and so week.  Now his pain is changing, from his knees, back and the one that worries us the most at the moment is the pain under his right rib cage not sure if this is liver or spleen or intestines? And when do we worry that we are missing something other than the pain associated with LD and should go to the ER?

I just don't know what to do for him or what to do next.  The dr obviously was not very helpful. And We are just not sure of the next step

also - he has taken only 2 doses of the rx.  Is the dosage enough since we figure he has probably had it in his system for so long?

Thanks for any input

Posted 7/30/2013 8:46 AM (GMT -5)
I'm very sorry to hear about your son, that has to be really tough.

I would work on finding a Lyme Literate Medical Doctor, ASAP. There is a way to do that on this forum, if you check out the newbie section.

Regular doctors just won't due for LD, you need someone who really understands how this works. It could be a long process, so I would recommend you read all you can about LD and educate yourself and your son so that you can understand what's happening to you.

Where do you live?
Posted 7/30/2013 9:33 AM (GMT -5)
We are in upstate NY Binghamton/Ithaca area.
Thanks for the reply - posted a new post asking for an LLMD referral.
Posted 7/30/2013 10:18 AM (GMT -5)
Mom2nane, Pain under the rib cage is a symptom associated with Lyme.  I had it a few monts ago for the first time.  I thought that it was probably my kidneys because of where the pain was radiating from.  I also had back pain at the same time that I was having these symptoms.  My primary doctor sent me for a MRI of the lower torso and they didn't find anything significant.  After a few weeks the pain slowly subsided. 

I recommend that you work with your primary doctor for now to eliminate the common things that can be found through an MRI or CATscan.  If anything, it will give you peace of mind.  If there is something more serious the tests will help your doctor prescribe a treatment plan effectively.  Any tests that your primary doctor orders will also help your LLMD do a better diagnosis once you visit him/her.  Some LLMDs don't take insurance, so if you have insurance, the best plan is to work with your primary doctor and a LLMD together to get the best treatment at the lowest cost.

As for the antibiotics, we find that two weeks of antibiotics is seldom enough to eliminate the Lyme disease bacteria.  The reason being that the bacteria has multiple cycles and the entire cycle can last over 4 weeks.  It also hides in places where it cannot be easily reached by the immune system or the antibiotics.

You will also find that people who suffer from LD often take natural supplements.  I recommend that you look into what others are taking and see what can help your son.  These supplements are cheaper than prescription medicine and can ease some of the LD symptoms while the antiobiotics and the immune system do their work.  Some even act as carriers and carry the antibiotics to the entire body.

 

Posted 7/30/2013 12:22 PM (GMT -5)
I am so sorry to hear your son is sick.  My son also tested positive for lyme but we think we got his early.  He was 12.  Anyway, I cannot stress enough the importance of getting to a lyme literate doctor.  There is great controversy in the medical community regarding the diagnosis and treatment of lyme.  I had a very hard time finding a doctor who would treat  my son long enough despite the fact that both my husband and I fight chronic lyme. 

I did however find a pediatric neurologist which was lyme literate who agreed to treat my son for 4 months with doxy until he was symptom free and he has been fine now for 2 years. 

It sounds like your son has had the lyme for a while so he will need lengthy treatment. 

The symptoms he is experience including the rib cage pain are very common with lyme but do not just brush them off.  Take every precaution as you can never be too careful.  Shrug off any condescending comments from ER personnel.  Its your son, not theirs.

You may want to post a request for a lyme doctor in your area in this form and include "looking for LLMD in __________" and see if you get any response. 

This forum was and continues to be a lifesaver for me so search and search and search.  Being well informed about lyme is so so important. 

 

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