My baby girl has being diagnosed with Lyme disease, so worried!!! Help!!

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mamanaham
New Member


Date Joined Aug 2010
Total Posts : 3
   Posted 8/28/2010 10:20 AM (GMT -7)   
about two months ago my little 21/2 year old daughter started with a diaper rash that wouldnt go away. I took her to the doctor three times in one month as it wouldnt go away and she wouldnt poop because of it.  I was told a different diagnosis on each occasion.  First up was thrush, then worms, then an anal fissure.  I did my research online during this time and come up with Lyme disease. Together with the rash as well as wanting to be carried all the time, sensitivity to light and wanting a sweater on in the boiling heat I drew up a short list of possible illnesses and come up with Lyme disease.   After suggesting this to the doctor I was told that it couldnt possibly be this as ticks dont bite in the anal area.  Again more cream was given to treat the trush/anal fissure.  The rash went away on its own and so did the soreness when pooping which has only just gone!! 
 
Last week, now two months after the rash started, I noticed that she was developing a faint skin rash that keeps coming and going in different places on her body.  Researched some more online and read that Lyme disease can have a secondary rash present after the initial "bulls eye" and that the rash can look nothing like the original one.  Went off to the doctor again who told me it must be a sensitive skin reaction to perhaps a new product that I am using to wash her clothes, etc.  I promptly made an appointment at another doctor in another area and he said the only way to be sure is a blood test.  Well the test results are in and she has Lyme disease, he said her score was very high!!!  He has scheduled her for a heart ultrasound and she is now on 28 days of anti biotics.
 
Now I am in hysterics with the whole situation!  I came across this forum and I am so stressed out after reading some of the posts and symptoms!  Are these posts from posters who never had treatment for antibiotics?  I believe that if you treat it within a year of the bite then it is ok, is this right?  Would she have any long term issues?  I have so many questions!!  Please could somebody tell me my baby girl is going to be just fine, please???

Caldonia Sun
Regular Member


Date Joined Aug 2009
Total Posts : 310
   Posted 8/28/2010 10:51 AM (GMT -7)   
I'm so sorry to hear that this has happened to your daughter. The quicker she is treated after a bite, the better her chances of full recovery. I don't know what the time frame for this is, though.

Is your current doc considered lyme literate? I would definitely find an LLMD (Lyme literate medical doctor) and have her seen as soon as possible. 28 days may not be long enough if she has had this for a while.

I have personally known several moms of toddlers/children with lyme. When properly treated, they got better and do not seem to have long term issues.

As for people on the forum, we have all used various methods of treatment. Many have used or are using antibiotics. Some have used naturals protocols and some a combination of both. Lyme is so different for each person - there is no 'one size fits all' treatment.

You are doing the right thing. Keep moving forward to find the right docs and treatment. Try to stay positive and realize there is hope. Ask as many questions as you need to on this forum, but realize we don't have all the answers. We'll all help you through.

Jeminij
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Date Joined Dec 2005
Total Posts : 1336
   Posted 8/28/2010 11:29 AM (GMT -7)   
my heart goes out to you. I have a 2 1/2 year old daughter too and I try to protect her best I can from getting this nasty disease. It sounds like you were really a great advocate for her not listening to the dr's. They don't know much still about this illness which boggles my mind. The good news is you seem to have caught it pretty early and she is now on abx which is great. I would continue to have her tested after treatment and keep an eye on her symptoms to see if they are going away with treatment and after treatment. I have my daugther tested just as a precaution because I had lyme when I was pregnant with her.

You are doing the right thing.

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35855
   Posted 8/28/2010 12:36 PM (GMT -7)   
Hi Mamanahan,
Welcome to our forum! I am sooo very sorry that your little girl got infected!! It is critical that she receives the proper care in order to stop this now. Please don't let our stories scare or worry you, we exchange a lot of info here, so we have a tendency to focus on what's wrong - not the tings that have resolved. You will find us a caring group of people, from all walks of life & of all ages.

I would most heartily agree with Caldonia - do everything you can possibly do to get your daughter in to see a qualified LLMD. That would be one of the safest things you could probably do at this point. A good LLMD understands how tick-borne infections affect the body , & so knows about the different symptoms & whether they mean things are going well, or that they are seeing signs of progressing illness. Another thing is that a qualified LLMD will know what other "co-infections" to test for, as Lyme rarely travels alone.

Most of us (I think) agree that you will need to be your daughter's Health Advocate to ensure that she is getting healthier. One of the best things you can do at this point - IMHO - is to read, read, read. The more knowledge you have the more impact you can have in decisions dealing with your daughter's health.

BTW - these infections can be passed by any critter that can bite an animal (or person) and live to bite another - mosquitoes, biting flies, and of course ticks - ALL ticks, including the brown dog tick.

I am one of those that is using alternative healing methods, but I do support those who need abx, especially for children. When 'caught' in time, abx can eradicate the bacteria from a person. This is why a lot of us believe in aggressive treatments.

In order to have the best outcome (your daughter fully regaining her health) most knowledgeable LLMD's say that abx treatments need to start immediately - the sooner the better chance of full recovery. Not to scare you, but it can take as little as 2 weeks for a straight forward case of Lyme to become a chronic infection. This is because while the bacteria is still in the blood stream, it is easiest to kill off with abx. The longer a person has to wait for abx, the more of these little critters move from the blood stream to the tissues, where it can hide for many, many years - only to pop up again after that person has gone through a particularly stressful event in their lives. Unfortunately, a lot of us here thought we had gotten 'enough' treatment, only for this insidious illness to come back later.

You have come to a good place to learn, to ask questions & to just have someone understand the unique frustrations that come with someone in your family having Lyme and/or co-infections. We also come here to vent once in a while, as things can get quite frustrating from time to time.

I hope that this helps you a little....
Hang in there!!!
Trav
Even the mightiest oak tree was once a little nut who held it's ground!!!
May we all find peace along the journey to find healing.
"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP
Trav

Simela
Veteran Member


Date Joined Aug 2010
Total Posts : 552
   Posted 8/28/2010 4:05 PM (GMT -7)   
Yes, read the pdf above that JunkYardWilly gave you the link for and don't let any stones unturned. Ticks are infected with many other diseases besides lyme. Have your baby tested for those as well. The pdf explains everything. abx don't kill all of the diseases the tick that bit your daughter MAY carry. Please be aware of this. It is best to have her treated by an LLMD.

Good luck!

mamanaham
New Member


Date Joined Aug 2010
Total Posts : 3
   Posted 8/29/2010 7:37 AM (GMT -7)   
Thanks everyone for the replies.  There is just so much info available online that is just so hard to take it all in and get anything useful from it.  To top it all my husband seems to not be taking it very seriously.  Last night I started talking to him about all the various issues relating to LD and he seemed to lose his temper and told me that I am stressing myself out searching all over for info on this and that I should trust in the fact that the antibiotics are been taken now so there is nothing more to worry about.  I am sure he is just sticking his head in the sand and that is his way of coping with this all but is he right, should I trust that there wont be any further issues as she is now on antibiotics or will the antibiotics do a percentage of the "clear up" but we may face further problems down the line?

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35855
   Posted 8/29/2010 7:52 AM (GMT -7)   
Mamanaham,
I really hate telling someone their spouse is wrong - but - I'm sorry - your hubby is wrong in this instance. You DO have a lot to worry about. You DO need to know as much as you can take in about these tick-borne illnesses. I believe that most knowledgeable docs believe that while the tick-borne infections are being killed off, the rest of the body will need 'support'. Detoxing, taking supplements & such.

You're right about there being sooo much info out there, and as a person is just learning it, it's hard to know what is a good site to trust for your information. As you do your reading & you come across some info you just can't make sense of, just come here & post your questions. We will be happy to try to help you make sense of it all.

I am so sorry that you are in the position you are in!! Your Daughter is one very lucky little girl to have a Mom as dedicated as you to her health. There are scary amounts of people here where I live that just believe their docs & their kids are not getting the right treatment. These children will most likely relapse at some point in their lives, due to inappropriate treatment.

IMO - You are doing the right thing by wanting to know all that you can about your daughters' illness.
Even the mightiest oak tree was once a little nut who held it's ground!!!
May we all find peace along the journey to find healing.
"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP
Trav

Simela
Veteran Member


Date Joined Aug 2010
Total Posts : 552
   Posted 8/29/2010 8:23 AM (GMT -7)   
mamanaham
THE very people that have written the guidelines to treat lyme are under investigation by the attorney gen. of CT. There is a conflict of interest because these people also hold patents and are profiting one way or another from this disease. Unfortunately, it will take time for docs to learn about how untreating LD and not taking it seriously early on will affect patients. Most docs are not up to date on this disease and the complications that co-infections brings about. Please do yourself a favor and see an LLMD. They are not cheap, but the treatement will be so much more expensive if you wait.

See, this bacteria has a 4 week cycle if I remember correctly. ABX for less than 4 weeks will not kill all the bacteria IMO. If your daughter's immune system is strong enough and IF she does not have co-infections, she MAY recover 100% because her immune system MAY be able to fight the Lyme. IF NOT, she may relapse within months or years. I'll tell you, I was on abx for 3 weeks, I believed the doc that it is enough, and then within months I relapsed. I now have much worse symptoms, including neurological and memory problems. In my bad days I don't remember how to add noumbers and how to cook. I go somewhere and I forgot where I was going and why I am there. Pains that I never had before are not hitting me. This is from someone that got A+ grades in Grad school--my major was statistics and i am (or used to be) sharp and very good at math! It is pathetic! My son was laughing the other day because I told him 10+8=16! He thought I was joking around, because I kept insisting that I was right! I wish I was! I was trying to figure out when time was for my next pill, as I take them every 8 hours!

My husband is still in denial, because I can still walk!

If you are looking for info:  visit the New to lyme... Start here link on this forum.  You will find valuable and accurate info that was compiled over time.  here is the link:

http://www.healingwell.com/community/default.aspx?f=30&m=1606610

I was diagnosed with lyme within 6 mo from being infected.  i don't know for sure, though, bec. I never got the rash.  If you visit the CDC info, you will find out that the rash is sometimes just a regular rash, it does not have to be the bulls eye rash that some docs based their diagnoses on.  I don't know why they are not up to date and where they are getting their info!!!

Post Edited (Simela) : 8/29/2010 9:39:27 AM (GMT-6)


mamanaham
New Member


Date Joined Aug 2010
Total Posts : 3
   Posted 8/30/2010 2:31 AM (GMT -7)   
Good Morning all, I am feeling a bit more positive today as, after spending may hours reseaching online last night, I realised that your suggestion of finding a Lyme disease specialist is far perferable to trying to work my way through this alone.  So this morning I made an appointment with a specialist for Thursday am and feeling much better.  I tried to make an appointment with the ultrasound specialist for her heart ultrasound but they are fully booked till the 24th September!!  Hoping this specialist can provide me with the details of another practice that would have an earlier appointment.  Sure it is not urgent but would prefer to know the situation alot earlier. 
 
On another note, now have the full support of my husband as he apologized the next morning and said that his way of dealing with it is to "stick his head in the sand" which is easier for him then to face it head on.  Suppose we all deal with things differently.  I have the "mother lion" in built though as being a mother means having to face it all head on and leave no stone unturned when it come to protecting your children.
 
Keep you posted.
 
Edited this post as had one little quick question:-  Sites talk of three stages, early, mid and late.  Since she is 2 months along since the bite would you say this is early or mid stage?

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35855
   Posted 8/30/2010 6:40 AM (GMT -7)   
Hi Mamanaham!
I am so glad that you & hubby are now a unified couple!!! That is really great news!!! Your daughter will be better for it!
It is also really great news that not only are you now going to take your daughter to a LLMD, but that you got in so quickly!!!

It might be helpful for you to read "Advanced Topics in Lyme Disease" by Dr & Researcher Joseph Burrascano Jr.. This ended up taking 37 pages when I printed it out, but I have been soooooo grateful that I took the time to print it out! My gp asks for it anytime I go in for something that is connected to my tick-borne infections. Even if you don't print it out, I would suggest that you read it. Type in "Advanced Topics of Lyme Disease" in your search box & you should see a pdf file for it. He is a very well respected man for his knowledge & work in this field.

The different stages of LD are determined by what set of symptoms the patient is 'displaying' at that time, not by the number of weeks, months or even years of having it.

Simela
Veteran Member


Date Joined Aug 2010
Total Posts : 552
   Posted 8/30/2010 6:42 AM (GMT -7)   
You are doing the right thing, taking her to a specialist. In my oppinion, the 3 stages are different for everyone. There are people that go down the hill faster than others. Most recently, I have found out that it has to do with genetics, among other things and also, most LLMD are suggesting detoxing, they seem to be very beneficial to help get the toxins out that are caused by dead bacteria killed by the abx. You don't want all these toxines staying in her little body!  It also depends of her overwell health and most importantly, how strong her immune system is to fight the disease.

You can learn more from here:
http://www.betterhealthguy.com/joomla/images/stories/PDF/acam_2006.pdf

Those are interviwes with some of the best LD specialists in the country!

For people that are dealing with other toxins, including mold, recovery is longer. This would explain why some get better faster than others. Watch her diet, too. You can learn more from the link that I listed in my previous post.


VItamin C and sault seem to help also, although the experts can't have an explanation for it.

Good luck and keep us posted, please. I got pregnant while treated for Lyme and I only took abx for 3 weeks during pregnancy. I am having my baby tested tomorow. She is 9 mo old.

bucci
Veteran Member


Date Joined May 2006
Total Posts : 1477
   Posted 8/31/2010 6:23 PM (GMT -7)   
manaham,
just curious where do you live.
some states it is easier to find lyme agressive doctors with years of experience.

since i think half if not all my family has some version of lyme...my dad and I are diagnosed
and living with it for over 30 yrs. I just found out less than a year ago and my Dad never got the right treatment.
I thought we both had the same neurological mental disorder untill I was tested and realized all his problems were that he never got right treatment for it and that I never knew lyme was the problem.
I still think my mother died of lyme induced leukemia from being on prednisone all those years.

i would check every person in the family especially since half the people with lyme have no idea how they got it.
something could be in your families enviornment that is screaming out from your little girl but just as well you never know
about everyone else in the house. you have seen all the signs and symptoms on the web. you don't have to have a rash.

Thank God you figured this out.
hep c , lyme
Dad has lyme

+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 8/31/2010 7:10 PM (GMT -7)   
Mamanaham, I would just like to chime in here -- I am no Lyme 'expert' (altho I know more than PCPs), but have done enough research to assure you that this forum has given you excellent and necessary information.

You and your family are in my thoughts and prayers.

And this is a personal belief of mine, which I have based on a lot of info and various treatments. This early in this mess, I will hope (and hopefully believe!) that a sufficient dose of abx over a sufficient time period, will knock your daughter's infection out, dead cold.

And IF, by chance it does not, then I do believe she would benefit from alternative/homeopathic 'cures', if they also boost her immune system.

Good luck and God bless your family. I know how tough this must be for all of you!
Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
 
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.

daisyrlb
Regular Member


Date Joined Jan 2010
Total Posts : 277
   Posted 8/31/2010 8:17 PM (GMT -7)   
Mamanaham, So sorry your little one has Lyme Disease. She is blessed to have a conscientious mom who did not give up...but rather has gone more than the extra mile to see that she gets the help she needs. Surely God has led you thus far, and He will continue to lead. There is healing from Lyme Disease!

You, your precious little one, and your family are in my prayers.

Peace,
Rhonda
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