posted
I'm posting this question in the hopes of getting feedback for my family members. Please help me save my family? I hope to pass your comments on to all of them.
My sisters, brother, Mom and Dad obviously had the same environmental exposure and lifestyle I had. We boated constantly in the summer and I couldn't tell you how many ticks we accidently found, then removed from our bodies while I was growing up. We all vacationed together (fishing) in a cabin on the lake in Minnesota (many times) when we were young adults, and my parents and siblings still do. Many, many ticks were removed in Minn. and that's where I received my toxic tick bite.
I believe the probability of them having lyme is very high. However, they all think I'm off my nut. Blowing smoke, exaggerating, taking my experience with lyme and reading too much into their own health problems. I'm the fruitcake of the family because I had to chase lyme disease for 21 years. I'm not/wasn't very credible to them because doctor after doctor diagnosed things, only to reverse each diagnosis later. I think they all thought I was attention seeking.
I have a very small family: I have 4 children, two sisters and 1 brother; 3 nephews and one niece. Four of my family members have seizure disorders -- two of my sons, my sister and my nephew. I've always felt this was an extraordinarily high number of family members with a seizure disorder, and wondered why.
My youngest sister is 30. She started having seizures suddenly at 18 months after a weekend at the Wisconsin Dells (hope I'm remembering this correctly). She has temporal lobe epilepsy (grand mal), a black spot on her brain (the ducks think that's what's causing the seizures) learning disabilities and supposed mild mental retardation. Chronic pain, has had blood clots, allergies, bell's palsy (right eye is almost closed, supposedly caused by the seizures), migraines, anxiety, depression . . . I could go on and on about her. She was admitted to the hospital recently to see if she was a good candidate for brain surgery to stop the seizures. Thank God they said no.
My other sister had a double bypass when she was 39 years old, about 6 years ago. Her symptoms are high blood pressure, anxiety, depression, chest pain, chronic neck pain that strikes out of the blue. Most recently is a new arrthymia . . . you know the drill.
My Dad has high blood pressure, chronic pain (severe), diabetes, a mild problem with one of the valves in his heart, macular degeneration and most recently, some confusion? and memory difficulties. My sister recently bought him a small tape recorder to help him remember things. He fell down a while back and doctors told him they thought he tore his rotater cuff. However, he said his arm didn't really start hurting (nerve pain) until a week or longer after he fell. He also said he could lift his arm immediately after the fall, which wouldn't be in standing with a torn rotater cuff. He's refusing a MRI due to claustrophobia. Now he's having nerve pain so bad in his arm he can barely stand it.
My brother has chronic back pain for which he had surgery. He is also quite shy in social situations. Doctors tell him they can't find the cause of his pain, making him feel like they don't believe him because they can't find the source of his pain.
Everyone seems to have some pretty strong health problems. Problems that, for the most part, doctors don't have any concrete explanations.
I'm forgetting a zillion other health issues, and I didn't list everyone with health problems by any means.
Like I said, I'm going to send this link to each of them when everyone here is done replying to it.
I'll lay off the issue if my family members would just go get a western blot and prove to me they don't have lyme. Would you post some feedback or messages for them/me if you have the time? I can't think of a better cause.
Thank you very much in advance, BB
Posts: 703 | From Almost Heaven | Registered: Aug 2004
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posted
Okay, what I don't understand is this.... If some one said gee those symptoms sound like cancer, a person would immediately get checked.
Why isn't it the same with Lyme? Why continue with unnecessary pain and seizures?
They should read and take a look at the symptoms checklist in the back of this booklet because some of those symptoms are definately "classic" Lyme symptoms and are on the list. http://www.lymepa.org/Basics2004v4_3.pdf
NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
You listed 12 family members [including yourself] in totality. 4 of them have seizures. What are the odds ? 900 trillion to one ?
Fact: If they have lyme [which they almost assuredly do]their symptoms will [or certainly seem] to be getting progressively worse, and start destroying something vital, ending in premature death.
[Let's see, a couple of them already have heart problems]
To what other disease could they possibly owe all of these afflictions to ? Was a curse put upon the family ?
A couple of hundred bucks for lab work, and a lyme test from Igenex would clear up the mystery.
Biteback, if their not willing to even make this small of an effort to improve their health, then I doubt anything you say will persuade them.
Nonetheless, good luck !
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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posted
Well - I think it is about 97.3 % chance some or all of them would be positive!!
Actually, not sure about the number part so maybe should go w/ HIGH!!
I was sick 20+ years before my lyme diagnosis. Since then, hubby tested positive and child too - hers is gestational w/ NO history of tick exposure!!
As of Christmas this year, my mom agreed to be tested and hers was positive as well.
Sometimes folks don't always show symptoms and others get really sick. I think it depends on the strength of your immune system!
A dentist in our town was having EXTREME fatigue and numbness and tingling in his arm among other things. His wife knew of my history and symptoms and had him tested and it was positive for Lyme. Since then, she has tested positive as has one of their children. Also, one of her brothers has tested positive and they suspect another who is diagnosed as schizophrenic is probably positive as well but he still refuses to be tested.
You ought to show them Dr. Harvey's pandemic hypothosis (sp?) paper written a couple of years ago.
Anyway, I don't think u r nuts or crazy! I see it in lots of folks! Maybe we are all nutty but, hey - we're sick too!!!
Take care, Sherry
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Posts: 704 | From Huntsville, Texas | Registered: Oct 2000
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posted
BB, I'll respond Sat. as I'm off to see a dr. to get more benicar & refills.
Could you edit your long paragraphs above breaking them up more for us late-stage lymies to read & respond to better?
Thanks BB....tomorrow I promise to give a special link I found here!
Betty G., Iowa
Posts: 1 | From US | Registered: Aug 2015
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mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
Biting back-
And your family thinks you are nuts. They can't see the forest for the trees.
My parents are the same way. THey live in the woods, in NJ and spend a lot of time outside. My mom twiches all the time and has thyroid issues, for starters. My dad can't remember anything. THey have seem how sick we were and don't want that for themselves.
Linda LD
Frequent Contributor (1K+ posts)
Member # 6663
posted
Biting back,
I'm crazy girl in my family too! But at least my husband and children are being treated.
Hang in there--I know it is hard being the attention seeking crazy one...doesn't seem to matter that I never use to see a doctor. I'm a hypocondriact now, whatever..
Linda
Posts: 1171 | From Knoxville, TN US | Registered: Dec 2004
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posted
Hi Biting Back - It's hard to explain the horrible difficulties we all with go through with our families with Chronic Lyme!I went to the Chronic Illness seminar by the Autoimmunity Foundation in Chicago last weekend and learned that there is growing evidence that Lyme is spreading within the family by means that have never been defined very well in previous studies. Aside from the risk from tick bites, researchers have determined it can be passed cogenitally, and through other bodily fluids including tears and it was even proposed to be likely that coughing can pass it. (no definitive science backed this part up yet) The testimony included very credible researchers, PhD's and doctors from the U.K., Canada and the US. They discussed the treatment regimin found at www.marshalprotocol.com that has given people hope.
Hope this helps some Bob
Posts: 77 | From Morris County, NJ | Registered: Jul 2004
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posted
I believe my family has lyme. I can see symptoms in all of them..
As with any blood born disease you are not suppose to share razors or toothbrushes. How many times do we do this with those that live in our own house? it does happen...
I think part of it is transmission by these means.
posted
Last summer I found out I have chronic, late-stage Lyme, and this winter my son was diagnosed with it as well. Note that he's had it since he was an infant, but nobody knew what was wrong. I didn't even realize until over two years after he was born that I was sick with anything -- just thought I had aches and pains.
Now I keep telling me husband that we better buy extra insurance for the rest of the family in case they come down with it. We can barely afford treatment for two of us, with only one working.
I wouldn't be surprised if my mother has Lyme also. She has some sort of chronic fatigue going on, as well as depression. My parents still live in the woodsy New England home I grew up in.
- Kate D. in Nova Scotia
Posts: 11 | From Halifax, NS, Canada | Registered: Mar 2005
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Could you start a separate thread on "latest news..tears & coughing can spread lyme" topic? I think it's essential to start getting out the news & what REPUTABLE source this came from. Thanks Bob.
BB, sorry to read you haven't gotten a lot of responses but folks are so sick, and there are so MANY posts all over.
Hang in there my friend, and better health to you/family.
Betty G.
Posts: 1 | From US | Registered: Aug 2015
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posted
Hi Betty - I have it that the reference to coughing was only 'proposed to be likely', now that Bb has been found in tears. It was part of a general discussion during a seminar. Dr. Lida Mattman, a researcher that has beeb nominated for the Nobel prize in medicine, reported the finding in tears.
Andrew Wright, a leading MD from the UK, spoke about recent findings indicating the likelyhood of Bb being passed within the family versus tick bites. I would think thorough, empirical studies on this would be difficult at this point, but maybe someday...
I may have enough to send another thread on one of the studies Dr. Wright referred to last weekend. I will try later this week...I am having a bad neuro. stretch myself and just started Levaquin for the first time.
Hope this helps raise awareness in family life...let me know if you need more.
BB...Over the years I have came across non research type of info. that describes the sociological breakdowns that occurr when LD becomes 'an old story' for some family members versus an incapacitating disease that causes depression. This helped me some personally, but then again these were troubles with healthy family members and I know you probably have a different situation. Unfortunately it's all on paper.
Perhaps there is literature out there from researchers reporting on the difficulties and crisis' a family often faces and not just the patient. Bob
Posts: 77 | From Morris County, NJ | Registered: Jul 2004
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lymiecanuck
Unregistered
posted
Hi,
I have lyme obviously, my son has it, waiting on testing ,but has bulleyes rash and was born by me. I am sure my mom had lyme, she has passed now, they said all her problems were in her head too, and got a psych dx later on.
I suspect it in other family members but nobody listens to me. Oh well!!!!!
Before my avalanche of symptoms was told over active thyroid, but knew before this it was underactive and have had hormone imbalance forever.
I often wonder about diabetes and I'll tell you why. I think it's spirchoetes damageing the pancreas, and then you become diabetic, but just a thought. Reason being, my aunt has buleye like rashes all over, and they told her it is usually associated with diabetes and young children for some reason, but dont' know exactly why. Hello!!!!! Lyme mimics undiagnosis untreated diabetes as you probably know and I think many are being told they have diabets and it is actually lyme disease.
They gave her some dx and I said "sounds like lyme to me", but you know people do what they want to do, all I can do is tell them.
So try to educate your family, but if they don't listen try to not get crazy about it as it will only harm your heatlh in the long run .
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
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.
posted
Bob, thanks for reply where the tears & coughing comments came from!
Tree, every time I see your newbie post, I just happen to be looking for something, and there your list is so I can go in promptly and find what I need! Thanks for posting it for all newbies or whenever you have that someone is looking for!
Betty G., Iowa
Posts: 1 | From US | Registered: Aug 2015
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