Lyme Disease: Causes, Testing, Diagnosis & Treatments

[natural]

My son had extreme joint pain and swelling, stiff neck, loss of appetite. My daughter was feverish and achy, very pale, loss of appetite. Both had a bite mark with a ring around it.

[upward bound]

Our 5 y.o. has had symptoms for almost 3 yrs now, but her pediatrician performed the standard ELISA test and it came back negative.  After much research, we have found that the ELISA only detects 30% of Lyme cases.  We then asked for the Western Blot test, but by that time, she had had symptoms for over six months.  The Western blot catches about 70% of lyme cases if it is performed within 3-6 weeks of the tick bite.

As for her symptoms:  Unusual fatigue (this is not normal for a 2 1/2 y.o) stomach pain, migraines, overall achiness, mood swings, just to name a few.  She has been dealing with this for a very long time, but because this is such a controversial disease, I have found that the majority of pediatrician stick with the "protocol" for treatment.

Our daughter never had a bullseye rash, but most people don't.  I never did, my three other children never did, but my husband did.....

One doctor told us that Lyme can seem to go away, then 6 months later you begin to have symptoms all over again.  That is why it is hard to diagnose.  I had several different symptoms, went to different dr's for each symptom, was told I had every thing from too much stress (chest pains), fallen arches (foot pain), allergic reaction to soap (rash on my elbow that came and went), fybromyalgia (back muscle pain) and no apparent reason for migraines after going to a neurologist. 

But when you take all of these symptoms collectively, you have Lyme disease.  Once we found a Lyme literate doctor, he had blood test done that went to lab in California that specializes in Lyme disease (as well as other things).  Apparently, the Centers for Disease Control say that a Lyme test is not positive unless certain bands are positive, however, the ELISA and standard Western Blot tests only test for a handful of strains.  There are other strains that never get tested and you can still be positive.

[MommabyHisgrace]

I contracted Lyme's Disease when I was pregnant with my second child (just 8 weeks) and was put on massive amounts of antibiotics.  My bite did have the ring around it and actually if I remember correctly my doctor decided not to do the test and just gave me the antibiotics.  After being on this forum I'm realizing that we have had problems with yeast ever since.  Anyway, I still have relapses--stiff neck, achiness, and fatigue--I take Oregano Oil for ten days--just one capsule--and take a probiotic during and for about 10 days after.  If any of my children displayed these symptoms after being bit by a tick, I would not hesitate to give them the Oregano Oil.  Research it out and see what you think.  Anytime I need to use an antibiotic I use this instead and it really does seem to knock it out.  A close friend of mine's dh also does this when his symptoms come back and I believe he took the Oregano Oil instead of antibiotics when he was first bit.   Just my 2 cents!  Will be praying for your little ones!

[Becky in WV]

I'm not sure how much of a drive any of these will be for you, but for what it's worth...a lady who runs a local Lyme disease support group gave me this list of doctors when our daughter was bitten by a deer tick a month or so ago.   I'm not sure which ones of these will treat children...one is listed as a pediatrician though.   We ended up taking our daughter to our family doctor because no one on this list could see her soon enough.  Our Dr. prescribed 4 weeks of antibiotics without a positive test.   But she was on antibiotics the day after the tick bite so I think we caught it early enough.   I know I've seen a website that listed Lyme-friendly doctors in the U.S.  Maybe if you do a search you could find it?

Dr. Mark Sivieri, Laurel, MD  301-490-9911
Dr. James Matthews, Gaithersburg, MD 301-216-2065
Pediatrician Dr. Alan Vinitsky, Gaithersburg, MD 301-840-0002
Dr. Norton Fishman, Rockville, MD 301-330-9430
Dr. Letitia Short, Towson, MD  410-337-2707
Dr. Kenneth Singleton, Lutherville, MD  410-296-3737
Dr. Elisabeth Lucas, Lutherville, MD  410-823-3101
Dr. Richard Berg, Lutherville, MD  410-583-2711
Dr. Julia Wen, Lutherville, MD  410-583-2711
Dr. Sarah Fletcher, Sterling, VA  703-421-7000
Dr. Leila Zackrison, Fairfax, VA  703-359-9300
Dr. Trent Nichols, Hanover, PA  717-632-0300

[upward bound]

Thanks for the list of Dr.s!!! This is exactly what I have been looking for....real names and phone numbers

[upward bound]

BTW we have tried the oil of oregano as well as sameto (cat's claw), cumanda and burbur for about six months without any major improvement.  However, we all have had lyme so long that it is/was in the chronic stages.  My  husband has had it since he was a teenager.  He is 46 now.  I developed symptoms shortly after we were married.  We later learned that it can be passed in bodily fluids (husband to wife, mother to unborn child, etc.)

This is a very frustrating disease, especially when you think you have it licked, and then you have a relapse, grr.

Our family dr. is willing to give us doxycycline with a relapse, but who wants to keep taking antibiotics?  My husband and oldest son have recently done the parsite cleanse.   That seems to be helping some.  He wants to do the master cleanse next.  I would love to do that, but not until after the baby is born.  I hate the thought that I might be passing this along to my unborn baby, but I am not sure if I want to take any antibiotics right now.  Our lyme dr. said that when a women gets pregnant, their symptoms seems to go away, but that they come back with a vengeance once the baby is born.  He would have me continue on amoxicillan the entire pregnancy, but I quit taking them after the 1st month.  He also suggested that I go back on 1 month prior to delivery.

Not sure yet what I will do.  And am praying that I won't have a horrible relapse after delivery.

[4myhoonie]

help! can you tell me how you bought teasel? I searched ebay and searched Dr. Fitchey And you said you found it easily on ebay my husband may have it , almost sure and Ive been searching all morning!

Sorry I found it !!!!!!!! on ebay!14.00 a bottle. thank you so very much!

i am interested in finding out if anyone is doing this or has had results with it? 

[MommabyHisgrace]

BTW we have tried the oil of oregano as well as sameto (cat's claw), cumanda and burbur for about six months without any major improvement.  However, we all have had lyme so long that it is/was in the chronic stages.  My  husband has had it since he was a teenager.  He is 46 now.  I developed symptoms shortly after we were married.  We later learned that it can be passed in bodily fluids (husband to wife, mother to unborn child, etc.)

This is a very frustrating disease, especially when you think you have it licked, and then you have a relapse, grr.

Our family dr. is willing to give us doxycycline with a relapse, but who wants to keep taking antibiotics?  My husband and oldest son have recently done the parsite cleanse.   That seems to be helping some.  He wants to do the master cleanse next.  I would love to do that, but not until after the baby is born.  I hate the thought that I might be passing this along to my unborn baby, but I am not sure if I want to take any antibiotics right now.  Our lyme dr. said that when a women gets pregnant, their symptoms seems to go away, but that they come back with a vengeance once the baby is born.  He would have me continue on amoxicillan the entire pregnancy, but I quit taking them after the 1st month.  He also suggested that I go back on 1 month prior to delivery.

Not sure yet what I will do.  And am praying that I won't have a horrible relapse after delivery.

Just wanted to say that I will be praying for you--It can be so debilitating and especially when you are pregnant.  I was blessed to have gotten a bull's eye around my bite and was able to treat it right away.  I hope the cleanses work for you and your dh.  Blessings to you and your family.

[Eviesmom]

Sunday I scratched a tick off and had to the remove the head with tweezers.  I have no bullseye but it was kind of red and had a blackish head.  No pus or hot, anyway my husband asked me to go to the Free employee clinic and get it checked out. I did not want to because I feel fine, but I went and he suspects possible Lyme disease. He prescribed doxycycline 100mg for 14 days.  He said to apply warm compresses 4 times a day.  I am kind of in shock, I did have a slight fever.  This doctor is not my regular doctor, I think he is just a practitioner. I asked him if I should get a blood test or see someone else and he said only if I begin having flu like symptoms or the site gets worse.  I am glad I listened to my hubby, he does know best.  Anyway do you think I should see a Lyme disease doctor, what type of doctor are they? 
Thanks,
Heather

[natural]

Our regular dr did everything needed to combat the disease in my kids...they were only on antibiotics for a couple weeks and then it was fine.

The reason this dr didn't worry about giving you a test was probably because the tests detect the disease according to the antibodies your body produces. So, if you just got bit, your body probably has not produced enough of the antibodies to make a clear diagnosis of Lymes...My daughter's test came back negative, but the dr said it proabably would. Before the tests were even back, though, I treated her for it with the dreaded antibiotics...my son and hubby had just had tick diseases so I assumed she did too.

I just heard something really interesting on Oprah yesterday. I watch it when Dr Oz is on...he said if you have a tick the best way to get it out is to flip it over and pluck it out. He said that if you torment it by putting vaseline or gasoline or burn it, you will make it regurgitate all the bacteria into you.

He also said not to worry if you happen to leave the head in...as long as you got the body (sack o'germs/bacteria etc.) you will be fine and your body will push the head out eventually.

[freshisbest]

Wow. Doxy. is a powerful antibiotic that is hard for some to tolerate. We are always under the assumption here that if you get the tick out within 24 hrs you're safe. So we bathe every night in the summer....do " tick checks"...keep the hair short  on the boys....the tick can crawl around for awhile before they bite...so kids can be ' clear' at night and the next day you find one embedded. We are just super vigilant here in tick country.

[MommabyHisgrace]

Just to throw this in there--my niece was just diagnosed with Rocky Mountain Spotted Fever and they told her the tick needs to removed within 4 hours to be sure you do not get infected.  I know when I was diagnosed with Lyme Disease 7 years ago I was told it was 24 hours as well.  If you are treating the Lyme Disease within a couple weeks of being bit, a good alternative to the dreaded antibiotic is Oregano Oil.  Some have said it didn't work for them, but they had had the Lyme Disease for quite a while.  If anyone is interested in it let me know and I'll post more info on it.

[~esposita~]

Help!  I've just discovered a red spot on my DD's neck and I don't know what it is.  We do have a ton of ticks around here, and I do regularly look out for them.  I never saw a tick on her...just this red mark, last night during her bath.  For those of you who have had tick bites, does this look like one?  It is red and she says it hurts to touch it.  I just really don't want it to be LD - but I don't want to jump the gun in thinking it is.  She has no sickness symptoms. 

Any advice?

[freshisbest]

A tick bullseye will get bigger and bigger...looking in color, more like a bruise....or so go the ones I've seen

[natural]

That looks like it could be a spider bite, tick (regular tick) bite, mosquito bite ...or several other types of insect bites... I would keep an eye on it. If it is a deer tick nite it will get bigger and there will be a more definate bullseye. My daughter's bite turned out to be a little bigger than an oreo cookie and my son's  (we didin't know what it was at the time) covered almost his whole chest.

I would put some tea tree oil on it if you think that is too strong by itself you can mix it with a little olive oil or other carrier oil. Tea Tree oil has never let me down with any kind of itch, plus it will keep it from getting infected.

Hoe this helps, lets see what others think.
Sandra

[Isaacsmama]

A tick bullseye will get bigger and bigger...looking in color, more like a bruise....or so go the ones I've seen

it will lokk like a bullseye but  only about 60% of people that get infrected with Lyme get the bullseye rash.  I never got it which is why it took so long to diagnose me when I had Lyme.
http://www.lymenet.org/picture4.shtml

[lotsaboys]

I would say too, that it looks like something my kids often get- a spider or other insect bite. Keeping an eye on it though is a good idea.

[~esposita~]

Thanks to all who replied.  Here is whats going on now...so naturally I have more questions!

My little girl with no sickness symptoms got a fever yesterday and threw up twice.  (Flu-like symptoms?!?)  The size of the bite (see previous post) seems to be going down and it doesn't look like a bullseye, but frankly, I'm a bit worried.  She also says her neck hurts.  It seems to hurt just on the site of the bite.  Here is what my "logic" is saying:  If it was Lymes, she (1) wouldn't have thrown up; (2) the site of the bite wouldn't hurt, her whole neck would (3) the bite would (probably, but not necessarily) look "bullseyeish" and would grow, not shrink.  So, logic says it is not lymes, so stop worrying.  But...there is the "but I wonder if..." lingering in my mind.  DH says not to worry, so I'm trying not to, but I do know that if, by any chance it IS Lymes, then it needs to be caught asap...and that the symptoms will go away, giving false security.  (Am I making sence or just rambling?)

SOOOO...any advice?  Thanks bunches!

[lotsaboys]

I hear ya- about not wanting to worry, but still wondering!

As far as treating the Lyme ASAP, that would be in the first few weeks from what I've read. I found a tick attached to me this Spring which looked like a deer tick, but was so small even the Dr. wasn't sure. There was a bright red bruised-looking ring around the bite, but it went away in a couple days. I've still been watching for symptoms, its now been about 4 weeks, and other than a few little "maybes" I haven't had enough to make us convinced I might have Lyme.

So, I think if the symptoms persist it would be worth checking into.

'Nother thought- depending what insect bit her, it could be a reaction. Like people that are allergic to bee stings, etc. Now I'm rambling...

[hodgy]

help! can you tell me how you bought teasel? I searched ebay and searched Dr. Fitchey And you said you found it easily on ebay my husband may have it , almost sure and Ive been searching all morning!

Sorry I found it !!!!!!!! on ebay!14.00 a bottle. thank you so very much!

i am interested in finding out if anyone is doing this or has had results with it? 

I couldn't find if anyone used this with results.  SO just to bump this pretty old question.  Has anyone ever used the teasel and what were the results?

[Simply Kristen]

bump this thread

[mauimom]

Yes, had it twice.  We used an NP who used his own testing and then his own formulas. 
Sorry, I know,not much help, but it is possible to be cured.  I now have very little symptoms left.  And most of that is my own fault. 

[Siege]

My 7yods had Lyme Disease this last fall. We went to our regular Dr, who consulted with a specialist. We did antibiotics supplemented with TTU (all 3 types) and he is now fine. We caught it early enough and did the treatment exactly as prescribed and he is cured! CJ

[Simply Kristen]

There is a post in another thread about a salt and vitamin c therapy.

[lotsaboys]

There is a post in another thread about a salt and vitamin c therapy.

Here's a link: http://www.welltellme.com/discuss/index.php/topic,17054.0.html

[just jane]

My 5 yr dd had a tick embedded into her scalp.  I really believe it was there for quite awhile.   It was engorged with blood and had little black dots of poop around it.   (I feel like a bad mom!!  Her lovely thick dark hair is so hard to look through)
Anyway, I called her DR. and she said if it was a large tick, then don't worry about it.   So, I left it go for a week.   She has had no fever, but 2-3 inches down from the bite, she has now 4 swollen lymph glands.   I took her to the dr. and she decided to put her on 3 weeks of antibiotic.   I am glad to do this as a preventative and obviosly she has some sign of infection going on.    I am OK with her having the antibiotic because she has never had any before and I will give her probiotics every evening and for many months afterward.
Is there anything else I should give a 5 year old after this treatment??

[natural]

Wow looks like it has been a while since anyone has posted here, I guess it is that season again. So here is my issue. I have 4 kids -- the 3 older ones all have had Lymes. Now lastnight I noticed that my 2 yo had a tick on the back of his shoulder , not sure how long it has been there. I don't think too long though like a day, maybe.

I kept it so I could look online and it looks like an adult deer tick ..the black thing on the back with orange bottom part of the back.

This was just last night, no symptoms or anything, but what I am wondering is, how long after a bite will I see the symptoms? I should know this with all the experience, but does anyone know if there is a "rule" to go by?

I am watching for the bulls eye and sometimes I see it and sometimes I don't It would be useless for me to take him in for a test unless his body has developed antibodies, so i am not sure what to do...I don't want that bacteria in his body, but also don't want to treat for something he doesn't have --I hate antibiotics (most of the time 

Just venting, thanks for listening, any suggestions welcomed.

Sandra

[MommabyHisgrace]

I have had Lyme Disease and my bull's eye came on about 2 weeks after the bite.  Symptoms probably would take a few weeks as well.  We have had so many ticks already this year--I even went ahead and sprayed our yard just to hopefully cut them back.  We were finding them on us everyday!!!  I took my dd in about a month ago because her tick bite looked really red and had a rash around it.  The doctor said he wasn't comfortable treating a child with it unless the test came back positive or there was a distince bull's eye.  So far so good! 

The other thing I wanted to share was that my ND gave me an herbal blend from Kroger Herbs called SPK which is specifically for tick bites.  I take it every time I get a tick bite because I get symptoms even now when I get bit or that time of year comes around when I was bit over 8 years ago!  It really helps with muscle spasms, achiness, and feeling so run down.  Just thought I would pass that on!

[lotsaboys]

    Does anyone know of a good book on Lyme's disease? Maybe someone's experience with it or at least a book that a normal person can understand?

I know this question is old but wanted to mention a book that is great: "The Top 10 Lyme Disease Treatments" by Bryan Rosner

[mommyjen]

I went to several websites today where I could supposedly find a local lymes disease specialist and I had to give them my email/personal information or buy a book that lists them!  The site that was selling the book was saying that lymes disease dr.s have to stay out of the lyme light for some strange reason.     Odd.  I just want to find out if I can get testing locally.  I read the symptoms again and found nothing about tender points.  It just doesn't seem to fit according to my online research.  Don't think hubby's gonna pay for testing if I can't find any symptoms that sound like mine. I guess that lymes disease and mercury toxicity can be related though.  Anyone got anymore information about that?  Thanks!