Topic: I am SO ANGRY! Another family member diagnosed with Lyme:(
lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
I don't even know where to start with this post, and most of it is going to be ranting and raving - I've got to vent before I explode!!
Some of the "oldies" may remember me, most of the new ones will not as I haven't been an active member here for almost two years.
A recap for the newbies: I became sick with Lyme ( and babs and Bart) 6 years ago, two years undiagnosed. After becoming very sick I finally got my diagnosis, hooked up with an LLMD and did two years of abx and antimalarials, got much better and then transitioned to Rife, which I have been doing for about two years now. I'm not cured, but I've gotten my symptoms down to a manageable level and live a pretty normal life now.
I did get rebidden and reinfected last spring with Lyme, Bart and RMSF, was very sick again for a few months but recovered.
Right after my Lyme diagnosis (4 years ago) my fifteen year old cousin became very sick, missed tons of school and nobody could figure out what was wrong with her. Sound familiar? Yeah, it did to me too. After much begging and pleading to get her in to an LLMD, my sweet Aunt Vicky finally heeded my advice and made the appointment. Lo and behold my cousin did indeed have Lyme as well as babesia and RMSF. She was treated for almost a year and has made a complete recovery and is now in college and doing very well.
As for my own personal life, a started dating my boyfriend about a year ago and about 6 months ago he started having all kinds of problems. I will post more about him in a separate post but I'm 99% positive he's got Lyme disease and he has an appointment in January to see an LLMD.
Now let me back up a little bit and go back to my aunt Vicky. She started having joint problems about a year ago - started out with mild discomfort and quickly escalated to severe swelling and inability to use her hands at times. Started running a low grade fever, fatigue set in and slowly but surely other odd and random symptoms began creeping into her life. She's been running from doctor to doctor in the last year and has been given a diagnosis of rheumatoid arthritis, fibromyalgia and chrohns disease. (excuse me while I throw up. Ughhhhh, I want to SCREAM!!!)
She finally made an appointment with an LLMD (same one who treated me and her daughter) and who'd have guessed it! She has Lyme, babesia, bartonella and anaplasmosis. She's now become so Ill that she's had to quit her job of 22 years and is fighting to get disability.
My bright, beautiful, vivacious Aunt has turned into a woman I don't even recognize. A woman who lays in bed all day, with the blinds closed and the curtains drawn tight because she can't bear the light. I woman who can't dress herself because her hands are so swollen and mangled that they've been rendered useless. The woman who was once the queen of hugs now can't give or receive them because she's in so much pain that she can't bare to be touched. The woman who won yard of the month for 17 months in a row now has grass waist high and weeds have taken over flower beds that she spent years cultivating. The woman who always took pride in her appearance hasn't been able to run a brush through her hair in a over a week and taking a shower is now a monumental task. The accounting major that once handled all of her companies finances can't tell you what 2 plus 2 is.
I am so angry!!!!!!! I want to scream, I want to cry! We have a GD epidemic on our hands and nothing, NOTHING is being done about it!!! This has to STOP. It's so senseless, it doesn't have to be this way!
I made a vow several years ago when I was very sick to spend my life being a champion for Lyme rights once I got better. I've been better for two years and I've done NOTHING and I'm disgusted and ashamed of myself. No more!!!! I can't change the world, I can't make the government and the IDSA acknowledge chronic Lyme...but I will do what I can to help one individual at a time get the proper diagnosis and the proper treatment. I will do my part to spread the word on a local level that Lyme disease is here and it poses a threat to everyone. I don't know what else I can do...
Anyways, that's it. I just needed to rant. Thanks for listening.
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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Tammy N.
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I am so sorry, so sad. Crying as I read this. Wishing there was something more helpful that I could say. God bless you. Posts: 2238 | From East Coast | Registered: Jul 2010
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jackie51
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Member # 14233
posted
I am so sorry that your Aunt is now sick. This is a cruel and viscious disease that can take people's lives away.
May she find comfort in knowing you will do all you can for her and for others.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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lymielauren28
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Member # 13742
posted
Thanks so much y'all. I'm heading over there in just a bit to help her get her house cleaned up and take some food over. When i offered to help clean her house up she cried - said she's been wanting to ask for help for a while now but she's been too embarrassed. I just didn't realize how sick she's become in the last couple of months:(
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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Tammy N.
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posted
Please don't forget to consider looking into mold. It is such a HUGE issue for most of us (unbeknownst to most of us). To start, check out survivingmold.com. I had NO IDEA this was a central issue for me. I thought my main problem was lyme and cos.
Best to you.
Posts: 2238 | From East Coast | Registered: Jul 2010
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jackie51
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Member # 14233
posted
scorpiogirl--I was just telling someone I couldn't afford to spit! Yes, the bills they are a-piling.
sgirl--Interesting, that you said "my husband's wife". Yes, I agree. And here I was thinking how selfish mine is/was. Thanks for the reality check.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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posted
Reminds me of my frustration in trying to get people, like those with ALS, to get tested for lyme.
What state do you live in and are you and family in the outdoors a lot?
I'm currently talking with a woman who has lupus, arthritis and neuro symptoms and got a lot of bites in her lifetime.
Posts: 705 | From WA state | Registered: Jul 2011
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lymielauren28
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Member # 13742
posted
We're in Mississippi. I got multiple tick bites several years ago out at a friends farm and became sick soon after. Prior to Lyme I was very outdoorsy. My cousin came home from summer camp with a weird rash and got sick soon after. My aunt isn't outdoorsy at all other than gardening but her house backs up to woods and they have inside/ outside dogs. My boyfriend is anybody's guess. He has no memory of a tick bite and has never had a rash...
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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sutherngrl
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Member # 16270
posted
There is no end to the frustration of lyme disease. It is a horrible illness that is being ignored and it just doesn't make any sense.
I am so sorry about your aunt. I hope she gets better soon. I have an aunt that has gotten LD "twice" in the past two years. She caught it early and each time was treated and got well. But that shows you how easy it is to get LD, and in Mississippi too. This stuff is "everywhere".
Posts: 4035 | From Mississippi | Registered: Jul 2008
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I understand your anger and frustration Lauren....when I was much sicker I could care less about getting involved in the Lyme controversy or even being angry...I just didn't care about anything...just trying to hang on and find a way to get better.
As I am feeling better and my thinking is clearer I am getting angrier and angrier.
Dr Murakami (Foremost Canadian Lyme Dr who isn't allowed to practice anymore) but gives talks was in Nova Scotia last month....I suggested some family members attend...My sister and her fiancee did and her fiancee now believes he has Lyme. He found a Dr and was tested..He gets results tomorrow.
I suggested he go to Igenex web site and download the lab requisition form to take to Dr in case the results from local lab are neg.
Once he described his symptoms to me I am 100% sure he has Lyme and has for several years...now I am worried about him giving Lyme to my sister. They both are out doors a lot camping, hiking etc.
After 15 years I still don't have a local Dr (here in Georgia) to treat me, either they don't know enough about Lyme (and not interested in learning) or do know and are not interested in treating...The Dr I go to for thyroid issues has ordered some tests for me but flat out told me she won't treat Lyme stating I am not getting involved in that mess.
Happy to read you have improved though...rife machine is one of the protocols I use also.
-------------------- I am not a Doctor and I never played one on TV, I'm just a lab rat with Lyme trying to rid myself of this horrible disease. Posts: 88 | From Florida | Registered: Apr 2010
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Kudzuslipper
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Member # 31915
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I just want to send hugs to you, your family and your dear sweet aunt! I hope she finds some relief like you and her daughter have now that she has a dx.
Posts: 1728 | From USA | Registered: May 2011
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nonna05
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Member # 33557
posted
My God !! Why is this so difficult??? There are so many people out there who could help bring awareness, treatment, financial help,.. You know we have some people trying to help who are put under such scrutiny.
Out of all the "FAMOUS" people that might be sick, the only one I've heard of is a baseball player from Colo. Rockies a few years back.. got sick fast and is getting better .. Not sure how far along....
It seems like if there was some way to get a few really famous people aware ,something might happen. Like Elizabeth Taylor and AIDS....
Any ideas??????????????? Also is this a poor mans disease????? Just thought of that ,,you don't hear about it OR do they just get really good medical care that we are unaware of
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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Lymedin2010
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Member # 34322
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Are we all aware the LD, and some of the co-infections CAN DEFINITELY be passed via sexual contact and saliva exchange. The more you are in contact with your partner, the greater the chances. Odds of finding the bacteria on a simple swab of saliva, sexual secretions, urine, or blood are limited by the number of times it is checked.
There have been studies in states, where there is lower incidence of Borrelia B. infections in ticks, less than 2% (for ACTUAL field studies). Yet entire families are getting sick and giving it to each other. Bottom line is that the more contact you have, the better your chances of contracting it are.
I too am amazed at how many people have been bitten by ticks and how many people have this. After getting sick I have discovered that 14 confirmed people all within 6 houses RIGHT NEXT TO ME (LITERALLY ADJACENT TO EACH OTHER). My best friend and 2nd best friend in Queens. My sister, 1x niece getting treated, 3x other neices have gotten bit. My mother has been bit a number of times and is showing mild symptoms (daily headaches and easily catches infections). Last month I went to my realtor and she has it, including a number of people in her office. Yesterday, I was at my GI doc and the anesthesiologist had gotten bitten as well.
My stubborn nurse wife, who has muscle twitches all over and vibrations. She believes she has vitamin deficiency and does not have it. I have seen her have disabling headaches, gets tired easily, and has developed uterus (women) issues. Yet, she remains dogfast in her believe to be Lyme free.
I also went in to a local Best Buy store, and to my utter disbelief found a tick on one of the Apple display counters. Simply unreal!
This is going to effect EVERYONE on such a massive scale and will grow exponentially. The more humans get infected, the more the number of carriers out there, and further infections will propogate and the deadlier the smorgasbord of infections will become.
Wishing all the best.
Posts: 2094 | From NY | Registered: Oct 2011
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Tammy N.
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A tick on one of the Apple displays at Best Buy??? Holy crow!! That is terrifying.
Posts: 2238 | From East Coast | Registered: Jul 2010
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James1979
Unregistered
posted
quote:Originally posted by Tammy N.: A tick on one of the Apple displays at Best Buy??? Holy crow!! That is terrifying.
I'm never gonna buy another Apple product again! j/k
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Lymedin2010
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Member # 34322
posted
Yes, I know. My brother-in-law was there & he had discovered it. Had he not been there, I don't think anyone would have believed me.
My guess is that it detached itself after having a meal on someone.
Posts: 2094 | From NY | Registered: Oct 2011
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posted
Lauren I am sorry to hear about your family and your aunt who is very sick
I have 4 out of 5 people in My family who all have lyme disease Me My wife and both my sons and Both my dogs.
I moved out to the woods from the city to escape the Violence , Never Knowing how dangerous the woods are
I know at least 100 people Within a 2 mile radius from my house all infected with this disease
And most of them have never even heard of a coinfection
And many of them have had the Typical one month of antibiotics
When I ask them if they were coinfected they have no clue what I am talking about
We had 5 farmers last summer come down with Bells Palsey , Probably all from Lyme disease
I talk to people that have all the symptoms of lyme disease and do not know what is wrong with them
Me and My wife started going to local support groups where I live , There are many people coming together and becoming Politically active and fighting for change
I have never seen a disease that can do more damage to someone and these same people try to get help and many times these people are thrown under the medical bus to fend for themselves
I went to a conference the other week to see hear one of the Top Lyme doctors in the country speak
She has over a year waiting list to be seen by her, During her lecture she looked overwhelmed when she talked about the lack of doctors to treat all the people infected with this disease
The thing that shocked me is when she started using words like negligence and medical Malpractice for Doctors that do not treat us properly,
She said Not knowing is no escuse when talking about these doctors that remain clueless about this disease It is their Job to Know, and educate themselves
I hate seeing what this disease does to people and these same people have to go underground to get treatment because they can not find a doctor
Things need to change
Posts: 26 | From Northeast PA Allentown Lehigh Area | Registered: Jul 2010
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lymielauren28
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Member # 13742
posted
Hi all,
Once again, thank you for all the replies. It's beyond alarming how fast this disease is spreading and I know it's been said for years, but there's simply no way that "the powers that be" can keep a lid on this thing much longer. Lyme disease is exploding across the country and it won't be long before turning the cheek is no longer an option.
I take great pleasure in the fact that the handful of people who have been controlling Lyme politics since the 1970's are getting old - they can't hold on to the torch forever. I take even more pleasure in the fact that God is a righteous God and they will pay dearly for the atrocities and crimes they've committed while here on earth.
A tick in a Best Buy store?? Ugh. Scary! I came home one day about a year ago and there was a tick just chilling on my laptop on the coffee table. I thought I was gonna have a stroke!
I've been over to my aunts house several times in the last few days, and I've gotta say I'm getting a little frustrated. She was going on and on about how she has Lyme, fibromyalgia and rheumatoid arthritis and I've tried explaining to her that fibromyalgia is NOT a disease but simply a set of symptoms CAUSED by her Lyme infection. I also told her not to be surprised if her arthritis symptoms don't get much better after proper lyme treatment because that's likely caused by the lyme as well. I just don't think it's sinking in that thick brain of hers!
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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posted
This is one of the most eye opening threads I have read in a while .....that you, who have Lyme know so many others....
In my neck of the woods I don't know of anyone else diagnosed with Lyme but lots with fibromyalgia, arthritis, lupus.....I tried putting info in the local paper and they edited until it was just a short piece about ticks and to check for them..
People just aren't getting how dangerous it is even my dh, after me getting sicker for 14 years having a diagnosis for the past 2 years when talking with a neighbor and telling that I don't go out much as I am pretty sick...they asked what was wrong with me he told them I have "Diabetes"....duh...yes I do but that is not what had me bed bound and in pain.
Lyme is like a smoldering fire....something (or someone) has to break it open.
Even President Bush had Lyme in 2005, and took antibiotics and is "cured" I wonder if he really is....but it didn't get much attention and they kept it secret for a year.
Take a look at this video comparison of Pres Bush when he ran for Gov. of Texas and when he ran for President.....startling difference...
-------------------- I am not a Doctor and I never played one on TV, I'm just a lab rat with Lyme trying to rid myself of this horrible disease. Posts: 88 | From Florida | Registered: Apr 2010
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lymielauren28
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Member # 13742
posted
Hey Abby, I grew up in Georgia...Alpharretta the first half of my childhood and Athens the second half. I have a lot of family in Macon. My ex father-in-law lives in Auburn, Ga and he has Lyme disease. He was given an MS diagnosis but when some of his symptoms didn't match he finally went to the Mayo clinic thinking they would figure it out. They of course did not and it took him 3 more years and being on his deathbed to finally get the correct diagnosis of Lyme...
Apparently nobody gave any credence to the fact that he was a PARK RANGER for over twenty years. Ya wanna know why? Because there is no Lyme in Georgia! Or MissIssippi, or Alabama, or Florida, or Louisana, or Texas. Nope. Ain't no Lyme in the South. Or the Midwest. Or out West either for that matter. ***Big sigh***
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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ktkdommer
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Member # 29020
posted
I'm not well enough to march on Washington, but I can go to "seeking" and private message someone and help them. I hope that someday they will help someone and so on.
I will never forget the mother online in a different forum that helped me help my son. I will never forget the advocate in Iowa who offered me her number and then talked me through what needed to be done. They took 10 minutes of their lives and saved 5 of us -self, 2 boys, sister and nephew.
I will pay it forward every day that I can, even if I never leave my house. I look forward to the day I can do more.
I did complete the survey through CALDA as I hope everyone else did, too.
This weekend I heard about a subdivision in MI where 30 people are sick with Lyme disease. Why isn't that message getting out? Why isn't there an investigation the way one would be done if 5 kids in an area got leukemia?
Thanks everyone for the good conversation. You all are amazing!
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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That is why I look for Opportunity to share with others about this disease
You never know the impact it can have on someones life, I like what you mentioned about the woman that helped you out
We can all make a difference even if it is small things
I have a friend on another forum that will Invite people to his house to watch Under our Skin
He said he has had many positive responses and he said people always have a ton of questions after they see Under our skin
Posts: 26 | From Northeast PA Allentown Lehigh Area | Registered: Jul 2010
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Regarding Best Buy-I recommend an LLMD and Naturopath! Where there are apples, there are worms! And we all know computers can harbor a virus, but if there are ticks around, you can bet there will be some bacterial infections too! Pathogens everywhere! Treat and detox .
-------------------- GlitchyMomma Hashimoto's Thyroiditis dx July 2003 Cholecystectomy March 2010 Vit D3 Deficiency 2011 Progesterone Deficiency 2011 Adrenal Fatigue September 2011 Labcorp IgG 23 Positive, IgM 39 Positive, IgM 41 positive January 2012 Posts: 31 | From Louisiana | Registered: Jan 2012
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posted
Lymielauren thank you for starting this post...stinks you or any of us have to post things like this but its a great place to voice opinions and get some anger out.
Not going to lie, I was one of those non believers in how bad lyme can be a few years ago...I see how mainstream medicine can be brainwashing. I went from doctor to doctor and was told by many (even a very prestigious hospital in ct) that "no, this is not lyme, you dont have it" in very demeaning ways.
If there was no lymenet I would have been in a psych ward somewhere and who knows what would have become of me. (little background on me...I used to row on an elite rowing team, work for a large corporation and volunteer daily...oh and was always very outgoing and non stop and used to love to travel...but no according to the docs I was depressed and anxious)
Now this may sound strange, but I really think this happened to me for a reason. For many years my mom has been complaining of joint pain, shortness of breath, a feeling of inflamation and just non stop complaining.
None of us would listen to her bc we took her to almost every kind of doctor and got the same response...all tests are fine, you are just anxious ma'am.
I believed them too and forgive me mom...told her, yes its all in your head now get out and exercise and have fun.
Weellllll a few years later this is my payback for being an unhelpful jerk. Ok, I wasnt that mean to her, but no joke I do eat those words everyday now and she even reminds me bc shes the one taking care of me now..."come onnn get out of bed go exercise"...but i cant and dont want to and we laugh a little bc she says remember how you used to push me...now you see.
So back to my point, if I never would have gotten this my mom would have never received help and who knows where shed be by now. The poor woman already suffered and survived a subarachnoid hemhorrage and is going through menopause.
Her tests were all negative so no one began treating her and just put the blame on the menopause. We did too. But after seeing my llmd there it was all along...jerky babesia.
I wont bore you anymore but my point being how many more are out there and suffering and not getting help. It is so disheartening. In an odd way I consider myself the lucky one bc I can recieve treatment...
....and for an online community such as this.
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