An extremely important documentary on Lyme disease will be in theatres in June.

[Mommy7]

It is called Under Our Skin. People who have Lyme disease are often misdiagnosed. There are a lot of people out there diagnosed with Multiple Sclerosis, ALS and other diseases that actually have Lyme disease. Lyme disease is a bacterial infection. If it is not treated, it will continue to get worse. The number one cause of death with Lyme disease is from suicide. The pain can get so unbearable. Proper treatment of Lyme is difficult to come by. Doctors are under fire on this issue and hesitant to properly treat it.

 

If you would like to see a trailer to the film, go to www.YouTube.com and key in Lyme in the Search box. There are several trailers there. Click on them and you will get a huge eye opener. It is critical that you watch this film and tell everyone you know to watch it. People are needlessly suffering.

 

If I sound like I am passionate about this issue, I am. I have Lyme and at least 4 of my children do too. Thankfully, we are not nearly like the cases in this film. But, if we had not been diagnosed properly, we would be.

 

Please watch it.

[Sputterduck]

How did so many in your family get Lyme?

[Mommy7]

I honestly don't know. We never saw a tick or a rash or anything. ( By the way, my Lyme doctor said only 40 % get the rash and it doesn't always look like a bull's eye.) I just started having weird symptoms that your average doctor couldn't figure out and didn't take the time to try to figure out. Thank God, He directed our steps to an Integrative medicine type of doctor. A doctor who deals with your whole body, rather than just bits and pieces of it. That doctor is the one who suggested testing for Lyme.

 

I am VERY thankful that it came back positive because it does NOT NOT NOT always come back positive!!!! Could I say that again???? If a doctor has ever tested you for Lyme and it came back negative, so the doctor told you you do not have Lyme, THAT IS NOT NECESSARILY TRUE!!!! You can have Lyme and test negative. It happens all the time. It is a difficult disease to diagnose. It imitates 200 different diseases, I think it is. It is known as the Great Imitator because of that.

 

It is possible, although not proven, that I could have had it in a dormant state before I started having babies and then passed it on to them. It can cross the placenta and they have seen the spirochete in breast milk.

 

It is the only thing that makes sense to me. Only the Lord knows, I suppose.

[Ginevra]

My daughter has Lyme. And yes, it was serious detective work getting the right diagnosis. And that was even after I said repeatedly to different doctors, "We live in the woods and ticks are prevalent. Might it be Lyme Disease?" It wasn't until she had brain scans because of constant severe headaches that they listened to me.

[Jennifer in MI]

Can I ask what your and your childrens' symptoms were? I have a ds who spent a year going from one doctor to another trying to figure out what was wrong with him. He ran low-grade fevers - between 99 and 100 nearly every day. He was lethargic and slept much of the day. He had weird pains all over his body. I can't remember everything now. But, he did test negative for Lyme. After about a year, his symptoms gradually disappeared. Every so often, they come back for a week or so. I've always wondered . . .

[Ginevra]

My daughter had random joint pains. She had a swollen lymph node on her jaw that would get large and very sore, then be treated with antibiotics and then would reduce. She had (still has) rashes that break out on the inside of each arm. They just come and go. But it was when she had constant headaches that they paid attention.

 

I was also treated two summers ago because I had two swollen lymph nodes on one side of my neck and directly up from them in my head, there was a bump, like an insect bite bump. I was treated with the six-week antibiotics and that was that. My doctor listened when I said I thought it could be Lyme.

[mamamoon]

can i ask how fast after a tick episode would one nomally see a rash, if there was one? days, hours, weeks?

[mommaduck]

My husband has Lyme's...it's currently in remission and we caught it early. But I worry constantly, whenever he starts getting tired and achy, that it will flare up again. I also know a homeschool mama that is dying of Lyme's, the insurance won't pay for treatment, and the family can't afford it. It's pretty disgusting how Lyme's is denied, questioned, etc.

[In The Great White North]

can i ask how fast after a tick episode would one nomally see a rash, if there was one? days, hours, weeks?

 

3 - 30 days

[Chris in VA]

My dd9 is being treated as we speak for Lyme disease. I'd appreciate prayers.

She is taking Ceftin. Do you know if this is a good treatment for Lyme? She is too young for doxicycline (sp?) which is supposedly the treatment of choice.

[Mommy7]

:)

[Mommy7]

This thread is too important to miss!!!

[MomLovesClassics]

I know this has nothing to do with people, but my vet told me that tick borne illnesses are on the rise in animals. He explained that while in school things that were so uncommon that you may see once in a lifetime are now showing up quite regular.

[Mom0012]

I'm so thrilled this is coming out in theaters! I've seen the documentary and hope it brings about the change that is needed so that people with chronic lyme can get treatment. Right now, doctors that take on patients for chronic lyme risk losing their medical license. I have chronic lyme and suffered for years without a diagnosis, but am so fortunate that my doctor is one of the few in our area that is advocating for patients and willing to treat them.

 

Lisa

[Mom0012]

Can I ask what your and your childrens' symptoms were? I have a ds who spent a year going from one doctor to another trying to figure out what was wrong with him. He ran low-grade fevers - between 99 and 100 nearly every day. He was lethargic and slept much of the day. He had weird pains all over his body. I can't remember everything now. But, he did test negative for Lyme. After about a year, his symptoms gradually disappeared. Every so often, they come back for a week or so. I've always wondered . . .

 

 

Jennifer -

 

Those symptoms could very well be indicative of lyme. One of the problems with diagnosing lyme is that there is such a wide range of symptoms and the testing available is terribly inaccurate.

 

My symptoms included joint pain to the point where it was getting difficult for me to walk, anxiety and inability to sleep well for years, memory loss, fatigue, word retrieval problems, dizziness and extreme motion sickness and the random pains you mentioned. All of these problems have gone away with the lyme treatment. I have heard others have symptoms such as severe headaches and extreme fatigue.

 

If you have ruled out everything else, it may be worth seeking out a lyme-literate doctor and having them run some tests. Testing does not always lead to answers though and sometimes you have to just try to treat (antibiotics) and see if it relieves the symptoms. I hope you find the answer for your son.

 

Lisa

Edited May 14, 2009 by LisaTheresa

[Mom0012]

My dd9 is being treated as we speak for Lyme disease. I'd appreciate prayers.

She is taking Ceftin. Do you know if this is a good treatment for Lyme? She is too young for doxicycline (sp?) which is supposedly the treatment of choice.

 

Chris -

 

I don't know if this is a good treatment or not. Does she have chronic lyme or did you catch it right away? Is it relieving her symptoms? I am on many different antibiotics and we adjust and change them according to the impact they have on my symptoms. Different people respond better to different types of antibiotics. My doctor will keep me on antibiotics until I go 3 months of feeling totally cured. He says that in his experience, relapse is likely to occur if you don't have a significant period without symptoms before ending the antibiotics. I have been on them for a year so far. I have read that in many cases, average treatment time is 1 - 4 years. If you caught it early, then 6 weeks is what I think is usually recommended.

 

Lisa

Edited May 14, 2009 by LisaTheresa

[mama2cntrykids]

So, if when testing for Lymes, many times the test come up negative, how do you find out if that is truly what the symptoms are? Does that make sense?

[gandpsmommy]

I was under the impression that a tick had to actually imbed it's head in you to give you the disease. Is it possible to get bitten by a tick just by having the tick on you and get the disease? I had two ticks on me about a month ago after walking through a swampy area near woods and a pond with ds. And I think they were on me overnight. I found one on my leg when I got up the next morning and one in my bed the next day. My kids were also in bed with me, but I think they got on me from my long hair. Could the ticks have bitten me or my kids and I didn't even know? I do have what I thought was a cold. Could it be Lyme disease? I don't think I ever had a rash, but I sometimes get a weird, rough hive-like rash on the inside of my arms once in a while. That has been going on for months, though, long before the ticks. Now I'm worried. What should I look for, as far as symptoms?

[Mommy7]

I am excited to see so many responses. I am sorry to hear of so many who either have Lyme or know someone who does. As Dr. Jemsek said in the trailer on YouTube..."It's the next Tsunami!" I fear that many of us will know more and more with this awful disease.

 

Chris in Va: I don't know about Ceftin. My 8 yo took Amoxicillin. We are currently seeing a Lyme Literate Doctor who is Integrative in nature. He has her doing a homeopathic series right now. Her little body is worn out with the disease, all the antibiotics, etc. Her adrenals are "in the basement" as my doctor says.

 

My 12 yo is taking Biaxin, Augmentin for 2 wks, then adds Flagyl for the 3rd week and is then off for a week. To ward off the inevitable yeast problems, she is on Diflucan on MWF, but off the other days.

 

Jennifer in MI: I would strongly suggest that you find a Lyme Literate doctor...the average doctor will not do...Lyme diagnosis is very often a clinical judgement in which even if the test is negative, if the symptoms are there, the doctor may order antibiotics to see if it causes a response known as a herxheimer. That is the body's reaction to the toxins caused by the death of the bacteria. It can be fevers, chills, aching, increased old symptoms, new symptoms, etc.

 

Quill: If symptoms return, all of the bacteria may not be dead. I would be aggressive about getting it further treated should that happen. (hope it won't!) But, it is very common for Lyme symptoms to come and go. I have seen that with all of us.

 

Mommaduck: I totally agree...it IS disgusting how Lyme is denied, questioned, etc...that is why this documentary, Under Our Skin, will be so important to see. It will raise a real awareness about it.

 

gandpsmommy: Yes, the tick has to be imbedded to give you Lyme. It wouldn't give it to you just from crawling on you. But, yes, you can be bitten by one and not know it. I never saw a tick or rash or anything and neither did we with my children. I guess being aware of the symptoms can be helpful. I understand your concern. My husband says I have tickophobia now. He is so right. I don't plan on communing with nature a bunch or anything. No thank you!!!

 

Those interested in symptoms: They are wide and varied. I think there are a total of 56 or so. What one person experiences, another may not.

 

For me: I had subtle symptoms that gradually came out and got worse: the first was burning on my feet and neuropathy pain on my leg that forced me to go on medication to stabilize the nerves. I also have had a strong burny/achy pain on my scalp, burning on my arms, chest, legs at some point. I have had pain in my joints that moves around. I got so fatigued at one point, that I would cry over the idea of having to get up and face the day. I knew something was wrong with me, but I couldn't get any doctors to listen. Even with all that nerve stuff going on (in my leg as well as burning on my skin), my neurologist didn't even try to figure it out. I had at one point, lots of white spots in my line of vision. I have had tingling in different areas of my body. I have had shortness of breath.

 

Can you see why it is so hard to diagnose? I can just hear some of your thoughts...well that could be asthma, or....you have 6 children? Of course you are tired!!! That is the type of comment I received from doctors. They did not know what to do with me!!!! They didn't want to hear about it all, either!!!

 

My 8 yo started having strange headaches all of a sudden and even hallucinated several times. I was there when it happened. She was frightened by it. Not fun. We were told by the pediatric neurologist that they were migraines of a different kind. I'll say!!! She was very tired. She had pain that she described as feeling like a knife stabbing you all over. (Thank God, not much of that!!!) She has pain that comes and goes in her body. She is still very tired. She can be very defiant at times, too. How much is from the disease, I do not know.

 

My 12 yo has had aching in different joints, pain on the top of her head, fatigue, burning on her feet, crawling sensations on her skin (I have had that too), extreme irritability at times, and so many more I can't even think of them all (same with my symptoms, I am sure I have left some off)

 

My other two: one has had pain in his chest wall, knee pain, etc. The other has hallucinated some too. Has seen colors, etc. She has had dizziness quite a bit. One time she said it felt like she couldn't line her eyes up to look in front of her.

 

The other two have just had occasional things that make me wonder, but I'm just keeping my eye on the situation for now.

 

I hope that helps. I tell you one thing, if I had ANY question about it, I would see a Lyme Literate doctor! It is not something to play around with. Watch the trailer of Under Our Skin @ www.YouTube.com (key in Lyme) and you will know what I mean.

 

Blessings!!!!

Edited May 14, 2009 by Mommy7

[Mom0012]

I was under the impression that a tick had to actually imbed it's head in you to give you the disease. Is it possible to get bitten by a tick just by having the tick on you and get the disease? I had two ticks on me about a month ago after walking through a swampy area near woods and a pond with ds. And I think they were on me overnight. I found one on my leg when I got up the next morning and one in my bed the next day. My kids were also in bed with me, but I think they got on me from my long hair. Could the ticks have bitten me or my kids and I didn't even know? I do have what I thought was a cold. Could it be Lyme disease? I don't think I ever had a rash, but I sometimes get a weird, rough hive-like rash on the inside of my arms once in a while. That has been going on for months, though, long before the ticks. Now I'm worried. What should I look for, as far as symptoms?

 

Terri -

 

I never even found a tick on myself and lyme disease is so prevalent in the area I live, I was watching for them. The tick only has to be on you for a short time in order to transmit the disease. They are so small, it often happens that people don't even realize they were bitten. Just because you had a tick bite doesn't mean you have lyme, but they do not have to be fully embedded to make you sick.

 

Lisa

Edited May 14, 2009 by LisaTheresa

[Mommy7]

:iagree:It only has to break the surface of the skin.

[Mommy7]

Too important to miss.

[Mommy7]

Again. I am praying this thread will be a blessing and a help to someone out there.

[Sandra in NC]

I read a positive review of this movie in February. The next week, I looked for it in the movie listings and didn't see it. Now I know why -- it's not coming out until June!

 

I definitely want to see it.

[Ria]

Lyme disease is a fact of life in our county (our county has the highest incidence of Lyme Disease in PA). At least five of my chidren have had it, dh has had it, my mom has had it, and our dog had it twice.

 

Really, though, the docs here are very quick to treat for lyme; in fact, because of the many false negatives and the high rate of Lyme, docs treat for it whether the test is positive or negative. I don't worry about it; we watch for ticks but realize that the odds of actually finding one are slim. Watching for symptoms is as or more effective.

 

It's important to note that the rash does not appear in all cases, and sometimes it appears all over the body in what first appear to be hives but continue to get larger (my mom had this strange variation). At any rate, it's not a rash in the sense that you think of a rash (little bumps) but more of a strange red mark that gets bigger and bigger, eventually becoming red around the rim and normal-looking in the center (classic bulls-eye rash).

 

Ria

[LadyR]

My dd had Lyme disease about 8 years ago when she was 8 years old. We never saw a tick. She had a high fever for at least a week with no other symptoms. Her pediatrician said it was viral and to just wait it out. Then after a week or so she developed red circles all over her body - and they were expanding. Took her back to the doctor's office and two pediatricians told me she had hives and to just give her benadryl. I knew something was not right. I went home and called my dermatologist and got my dd in right away. She took one look at her and said "Lyme disease". She had her tested and the results were "sky high" for Lyme disease. Three weeks of antibiotics - can't remember which one. Thankfully, she's fine now. (We have a new pediatrician, by the way.)

[Mommy7]

:)

[Mommy7]

:D

[LBC]

I've been reading this thread with interest, and have a question.

 

A few weeks ago I woke up in the morning with an extremely painful knee joint. I could barely walk, yet I had done nothing to injure it. I went to the doctor, and she said it was behaving like a knee injury (swollen, sore, painful), but she couldn't figure out how it happened. The swelling went away after a couple of days, but I never did figure out the cause. My mother (who tends to read too much about everything that can go wrong with a person's health) wondered if it could be Lyme Disease. I looked at some of the symptoms, and they didn't seem to match. A few days later, one of the local area homeschoolers sent out an email to promote this same documentary, and shared that she had had Lyme, and had gone for years without a diagnosis. Now I see this thread, and wonder if God is trying to tell me something. Could my random knee pain be a symptom of Lyme Disease?

 

Lori

[Mommy7]

I certainly understand your concern. I just don't have the slightest idea if it is Lyme related or not. There are so many symptoms. Yes, knee swelling is one of them, but I believe it occurs later on in the progression of the disease. But, it progresses through bodies at different rates. It can take a very long time to get to the latter stages in some people. Others are there within months.

 

Do you have any of the other symptoms? If you are truly concerned, I would go to a Lyme literate doctor and be evaluated. If nothing else, you would walk away with peace of mind. (which means a lot!!!) ;)

[Mommy7]

I promise I won't bump this up again if there aren't many more responses. I just want to make sure everyone who needs to gets to read this and it doesn't get lost in the shuffle! ;)

[Tea Time]

Here is a website for people with rheumatic diseases using antibiotic protocol treatments. Several people on this board are being treated for Lyme, and they are very knowledgable and supportive. A good resource.

 

http://www.rbfbb.org/

[pandemonium]

I have got to see this. Our area is swarming with Lymes. My husband was just diagnosed.

[MomLovesClassics]

Today we went to the park to grill and eat. There were lots of ticks. I was the only one with a tick in my household, thank goodness. It was a tiny tick, my brothers family also got some ticks on them. I did mention this movie to them. :001_smile: My soon to be daughter in law had rocky mountain spotted fever before. I do not like ticks. My friend had Lyme,before.