posted
Caitlin tested positive for Epstein Barr AND Lyme Disease. Her dr did the western block test. He is now going to consult with the infectious disease doc and see about getting her in with him. And he put her on cephtin for 2 weeks. This is her 6th antibiotic since July.
No wonder my girl hasn't felt good for months. She came home from camp July 1st sick.
She is 13.
What do I do from here? Is her dr doing the right treatment?
Thanks
Sharon
Posts: 4 | From Highland | Registered: Nov 2004
| IP: Logged |
troutscout
Frequent Contributor (5K+ posts)
Member # 3121
posted
I don't know where you live...Highland doesn't say much....but;
NEVER let an Infectious Disease Doctor see your daughter...this will start a chain reaction that will only end up costing you money...and her her health.
You need to get her to an LLMD. (Lyme Literate Medical Doctor)
They know LYme and its co-infections. (Infectious Disease Doctors..REALLY don't)
------------------ Now is the time in your life to find the "tiger" within. Let the claws be bared, and Lyme BEWARE!!! Iowa Lyme Disease Assoc. www.ildf.info
Posts: 5262 | From North East Iowa | Registered: Sep 2002
| IP: Logged |
Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Hi Sharon, I'm glad you found your way over to LymeNet. I'm so sorry to hear that Caitlin's Western Blot was positive.
Infectious disease doctors almost always take the position that a couple weeks of antibiotics will "cure" the patient of chronic Lyme.
As many of the people here can tell you, that approach didn't work for them.
I'm glad she'll be on antibiotics for two weeks, but she'll probably need more. At least this should give you a little time to start researching the disease and looking for a Lyme literate doctor.
Please post her history and symptoms like you did on the other board. You're sure to get lots of advice on ways to handle this.
There is alot of info here, plan to spend alot of time reading when someone posts the links for new members for you. Take your time, it will eventually make sense.
Take care, Carol in PA
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
| IP: Logged |
caat
Frequent Contributor (1K+ posts)
Member # 2321
posted
I can't afford an LLMD and am seeing an infectious disease doc. Not all of them are pig headed. There is an LLMD who treats children on the east coast, someone else will probley write you on that- I'm not familiar with that doc.
What may save you some money in the long run, whether you see an ID doc OR an LLMD is to look up "cyst" forms. It's the eggs of the bacteria and they are susceptable to different antibiotics than the adult forms. Not all LLMDs and very few ID docs address that very well.
All spirochetes have a life cycle that is simular to the life cycle of H. pylori, although they are different & tougher bacteria. The more you educate yourself on this disease the better.
Look up "herx" too. You'll both probley need to know about that. There are 2 separate search engines on this site. "Cheryl's Lyme" site is very good too.
Also, check out co-infections. Ticks frequently carry more than one infection and also some strains of lyme can lower the immune system. It's important to address any additional infections going on.
I have epstien barr too and I found olive leaf tea helps me a lot, especially during lyme herxes when that virus would take advantage of the situation and flare up. Olive leaf has some anti-viral properties.
Posts: 1436 | From Humboldt county ca usa | Registered: Mar 2002
| IP: Logged |
here is a list of her symptoms: Fatigue, tiredness Unexplained hair loss Swollen glands: behind both ears and in neck Sore throat Stiffness of the back Muscle pain Headache neck stiffness, neck pain Ear pain, sound sensitivity Lightheadedness Sinus/ face hurting Right now you can't even hug her without it hurting her.
Thanks Sharon
Posts: 4 | From Highland | Registered: Nov 2004
| IP: Logged |
AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
I'm so sorry ur daughter is so ill...
I got lyme when i was 10 and not diagnosed until i was 23.... so I know what a childhood with lyme is like.
Trouscout is right...it does not sound like you have a good dr.
I am NOT a dr but as a lyme patient 2 weeks of antibotics is definetely not enough.... Read Dr B's guidelines
IN my opinion one of the difficult part in getting well is 1.) getting a diagnosis 2.) finding a lyme literate dr (llmd)
well you have #1 ... so your halfway their.
Lyme can be a very complicated disease and very hard to kill because it can be in more than one form ... not all antibotics work for each form.
There are very few drs. who really understand lyme and its coinfections and it seems even fewer who are really willing to treat lyme... especially if long term treatment is neccesarry...
unfortunately there are both political reasons and insurance reasons as well as ignorance why drs. wont treat.
Many of these drs say if you have had more than 4-6 weeks of antibotics you know longer have lyme.....this is not true... also incase someone does another lyme test in the future be aware that lyme tests are not very accurate.... meaning if she tests negative she could still have lyme.
lla2
Frequent Contributor (1K+ posts)
Member # 2364
posted
Dr. charles Ray jones is the only known pediatric lyme specialist in the country. I credit him with basically saving my kids lives, and pretty much 'curing'them at this point....he's wonderful, adn very knowledgable\\\ His phone is 1-203-772-1123. He is located in Connecticutt,and people bring there kids from all over the country adn even Europe for his treatment..
an llmd is a lyme literate md...NO, your daughter is not on the correct meds and will continue to get worse unless she gets the proper treatment...time is of the essence here..find a good llmd....a few great ones have already been mentioned to you...
Posts: 4713 | From saunderstown, ri Usa | Registered: Apr 2002
| IP: Logged |
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Sorry about your daughter she needs a LLMD. Also heres some things you should read.
WELCOME To LYMENET
Here's more goodys! A typical response to newcomers.
Hi and WELCOME! Get a LLMD or at least Dr that is willing to learn about lyme. Borrelia Burgdorferi is a clinical diagnosis, based on symptoms and on your response to treatment. Good Luck, bumpy road ahead.
Post for a LLMD inSeeking a Doctor. Ps remember I am not a Dr, just a fellow sufferer.
( No you don't always see a bite and if there's no bullseye the only way your going to be able to tell is (symptoms) and (((Maybe))) WB or lyme dot blot 3 day urine banged with abx's to free your antigens up for the test. ) See this ( . )thats the size of the larva stage tick... Next nymph size... ( * ) Next is adult ( o ) to ( 0 ) Pretty small????? HUH
posted
I agree with what everyone has said. Go see a LLMD. Get other tests for co-infections. Two weeks of antibiotics is way, way too little. (The bacteria can only be killed when it is replicating and borrelia replicates only about once a month). And she needs the antibiotic at high doses, usually twice what most IDs prescribe.
Lyme is quite a sad thing for a child to have. Her school work can be affected, her sense of self-esteem, her ability to do the things that are part of growing up and having fun.
It can cause what appears to the uninformed as "behavior problems" -- from rage to apathy to profound depression, constant anxiety and unfounded fears, fluctuating concentration, irritability, forgetting to do what is requested, confusion and getting lost, and so forth. That's all part of brain inflammation--encephalopathy.
It's a terrible and puzzling disease. For that reason, I also urge you to tell the camp where your daughter was infected that she picked up Lyme disease there. They should inform other parents that their children should be evaluated for Lyme disease if their kids experience symptoms such as the ones your daughter has. A good and conscientious camp will do that. One trying to save themselves from bad p.r. may not. Can you tell us where this camp is located?
Future campers should be made aware and take precautions, using tick repellent, permethrin-sprayed clothing, and daily tick checks.
Glad your daughter has a diagnosis. Hope she gets the right treatment and rids herself of this before it becomes chronic.
Pooch (who waited four years to get treated)
Posts: 548 | From Diagnosed 2003 | Registered: Jan 2003
| IP: Logged |
posted
please do not get scared by all the these replies. the amount of information is so overwhelming. these people are honestly trying to help.
maybe the doctor you are seeing presently can help your daughter...but if she does not get better and he starts telling you that she is now cured of lyme and it is all in her head....that chronic lyme does not exist ..it is just post lyme syndrom..etc
please remember all these posts! Dr.Jones is the best pediatric specialist in the country and he can help.....
it will be a roller coaster ride, but she can and will get better.
best to you and your daughter!
[This message has been edited by willbeatlyme (edited 04 November 2004).]
TheCrimeOfLyme
Frequent Contributor (1K+ posts)
Member # 4019
posted
There are some very great doctors in California, I dont really see a need for you travel across the globe unless you have the funds to do that.
Please do NOT fool with the ID doctor. Sure, some people here HAVE used them and they HAVE worked out ( I think like how many, two people here?) I wouldnt advertise them as knowing what they are doing though!
Im not willing to take that chance.
I hope the information I emailed you is helpful.
Now, from here? She can get better, with proper care from a good LLMD. Good luck to you!
Jodi
Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
| IP: Logged |
posted
Her dr put her on Ceftin 500 mg for 2 weeks, but he said that he could extend the time is she on her anitbiotic. He is will to do other treatments as needed too. I see him for my FMS as he is the only dr who has helped me with it.
He is our allergist - our family practice dr just said that she is sick without doing much for her other than putting her on antibiotics for a couple of weeks.
~Sharon
Posts: 4 | From Highland | Registered: Nov 2004
| IP: Logged |
500 mg of Ceftin may not be enough. Is that once a day? Ceftin does not remain in the system long enough to be taken once a day.
Sounds like your allergist is willing to help. It could be fine if you stay with him and have him confer with a LLMD. Many LLMDs are willing to do this. Not many regular doctors are.
Given that you've got a doctor who is willing to help, I would avoid the ID doc. CA is not a state where lyme is well known and you're more likely than not to get someone who can't help you. There's a lot of misinformation floating around amongst doctors who don't deal with Lyme on a regular basis.
Right now, I would suggest reading Dr. Burrascano's Treatment Guidelines. The link is in treepatrol's post. Print it out and bring it to your allergist. The faster and more aggressively you treat this disease in the beginning could lead to a much better outcome. The longer she has it, the more likely you'll be fighting a long term illness.
We don't post doctors names here unless they have expressly given consent to use them. Dr. B is one of them. So, if you are looking for a LLMD, you'll have to do it by posting on "Seeking a Doctor" and you will be emailed names of docs in your area.
My son who is 8 has lyme and is presently seeing Dr C who is an LLMD for treatment.
He is on Cefin 250mg twice a day. Dr C said that there are studies showing that Cefin is working better then Amoxil in children.
I can say that I have seen a huge difference in Dominic since treatment started.
I do believe she will need to be on this for more then just two weeks, even if it seems she is starting to get better.
Dominic was bitten when he was 3 and was CDC post. given antiboics for 6 weeks and then was "cured".
When he was 6 years old he became very very sick and that is when after seeing many dr's that didn't know what was wrong we found out he still had lyme but it had moved into the chronic lyme stage.
It does seem like your dr is willing to work with ya'll and that is great. My peditrician is working with our LLMD to help us since we live 12 hours away.
Possibly bring your dr. some info showing she needs more time on the med. hopefully he will continue to work with ya'll.
posted
When I was referred to an ID doctor by my daugter's pediatrician, I declined because I knew that my dd's pediatrician was not Lyme literate and was prescribing per consults with the ID doctor that she was referring us to. The antibiotic treatment protocol that the ID doctor advised (21 days amoxicillin) was not nearly long enough to tackle the Lyme (IMO after much research on my part).
My dd's Lyme recurred after the antibiotic 21 day rx was complete. 18 days later she was put on Ceftin (500mg per day {250mg 2x per day}) for an additional 21 days. This was the suggestion of the ID doctor to our pediatrician. Still, I personally didn't believe that 21 days would be enough after all that I had researched and read in the meantime about early Lyme treatment.
Although our pediatrician is a *wonderful* doctor, much like your allergist is, her knowledge about Lyme Disease only goes so far. She felt that by following the ID doctor's advice, she was doing the best that she could possibly do for our daughter. I would assume this is why your allergist has referred you to an ID doctor as well - to get the best treatment possible for your daughter as quickly as possible.
Now, here is the tricky part. The risk you are facing by visiting the ID doctor is that he/she may not be Lyme literate either and will then consult with your allergist. Your allergist may then follow the ID doctor's suggested treatment protocol and not take any additional steps toward your daughter's treatment other than what the ID doctor has suggested. And what if the ID doctor's suggestion for treatment is not adequate or aggressive enough to tackle your daughter's Lyme due to him/her being Lyme illiterate? Then you will be stuck.
I realized that this would probably be the case with my daughter and so I skipped the ID doctor and went straight to a LLMD. I had high hopes that my pediatrician would be open to working with an expert on Lyme Disease and vice-versa. So far, it seems to have turned out that way. Both seem to be more than willing to work together, and with us, to help our daughter in the fastest most effective way possible.
The most important thing in our case is that my daughter's Ceftin treatment was extended to a 6-week course per her LLMD, and her pediatrician prescribed the Ceftin after hearing what her LLMD's advice was. We didn't have to pay out of pocket for the Ceftin, the doctors seem to be working together, and we're not losing valuable time by flopping around from doc to doc and waiting to see which doc will do what and when they will do it.
I hope this is all making sense to you. Time is of the essence here and it will NOT on your side unless you see a Lyme literate doctor ASAP. I cannot emphasize that enough. It's a grueling fight dealing with Lyme Disease, not to mention emotionally taxing, but it must be done and be done quickly. Your daughter needs expert help...yesterday. And you are the one that is in charge of getting her that help.
It's hard. Believe me, I know how hard it is to have to stand up to doctors whom we've always trusted and believed in to help cure us and our loved ones when we're ill. And, I don't know about you, but doctors intimidate the heck out of me! It would be so much easier to just have faith in their medical expertise, follow their advice, and rest easy. But with Lyme? Not a chance. We have to become highly proactive and even sometimes (well, a lot of the time) fight for the right doctor & the right treatment, and do it all under the pressure of time.
Many hugs for Caitlin and for you and your family,
posted
She is on Ceftin 500 mg 2x day.
Posts: 4 | From Highland | Registered: Nov 2004
| IP: Logged |
Lyddie
Unregistered
posted
Lot of people said a lot of good things here. Just wanted to add that for 2 of my kids, the age 12-13 (puberty for them) caused a huge Lyme flare. One of my kids was exactly like yours, pain all over, Raynaud's, headache, all kinds of stuff.
I wonder if you do go to an LLMD (or anyone else, including ID- we use the well-known above-mentioned East Coast LLMD who is an ID) you might want to see if she has a positive ANA (anti-nuclear antibody) and do HLA-DR typing. These tests can determine if there might be autoimmune stuff going on w/the Lyme.
My daughter's ANA was 1:1280 but is now down to 1:160- positive but great! Plaquenil is a good drug if you have autoimmune stuff happening, and is also used by Lyme docs along with Biaxin or Zithromax to increase absorption of the drug.
The worst part about the flare w/adolescence for us was that the kids really want to live their life, and they end up at home. But things seem to improve as they get near 15, at least with treatment. Good luck!
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Is her dr doing the right treatment? 
Printer-friendly view of this topic