This is the line that makes you lose your doctor, the line that makes them laugh. The line that changes your life forever.
Your doctor will not bat an eye if you tell them you think you have an STD (sexually transmitted disease) or AIDS (you will get support) or that you perhaps had an abortion, are an abuse victim, or any other equally difficult situation to discuss with a physician. It is easier to come out of the closet and tell your doctor that you have any of the above, than it is to tell them.
"I have Lyme'.
The doctors eyes glaze over as they see their medical careers go down the tubes. They think, I must get rid of this patient.
If they are sadistic, they laugh, and pat you on the hand and tell you, that you need a shrink.
If they want to care for you but are afraid, they tell you, that you have fibromyalgia or some other disease and attempt to medicate you into some type of oblivion.
I have had several of these other diseases and am being treated for one right now with some pretty expensive treatment, so, I have no choice but to keep my mouth shut and hope this works, because I don't have insurance access to antibiotics.
I am a long time medical professional, with substantial post graduate education. I know, now, what I have and don't have.
I know the autonomic neuropathy and many other problems I have are not attributable to any currently known and defined autoimmune disease.
I live in a state with a very high incidence of Lyme. I was diagnosed at the time an EM presented, one with a punctate center. I was living in an endemic area. I hope I am one of the 33 reported cases that year.
My titer started to climb, and it showed elevated levels of antibodies but not yet up to the State Lab of Hygeine's level of seropositivity.
I was told when I took the Amox. that my titer would stay at the current level. I didn't know that this would mean the rest of my life I would be 'seronegative'.
My EM rash by then was present for 10 days. I was having arthralgias and fevers. I was having parasthesias.
So, I took the pills, thinking that my government, and the CDC would certainly not act to hurt me, or to deprive me of medical care. I took Amox. 500mg 3 times per day for 20 days.
I was wrong.
I now have chronic lyme with life threatening issues. I will die of Lyme if something does not work. My death certificate will not read Lyme but my family is instructed to get an autopsy. If any one knows a place where this can be done, please PM me, because I do not trust a single facility in my state.
Here a physician diagnosed case caught within 2 weeks of initial infection, with an EM and rising titer, will not get any more treatment for this disease.
I went back to my primary for a follow up blood test...Why? Why did they recommend a follow up titer? Just to reinforce that I am now Lyme negative? (Yes, Igenex says I am positive, 15 years later) Not one other lab says I am positive.
I have had lumbar puncture PCR, but I have peripheral, not central nervous system problems. Peripheral neuropathy can cause terrible autonomic problems including hypotension and bradycardia. You can't capture Bb in peripheral nerves without damaging them.
My t cells are messed up. Lyme has clearly made a mess of my immune system and my nervous system is failing badly. My story echoes one told on one of the other Lyme sites.
It is recorded in my medical history, as 'History of Lyme'.
Yet, the doctors would rather spend thousands of dollars on tests that I don't need. They would rather give me diagnoses such as sero-negative 'this' or Idiopathic 'that'.
Not one has the courage to say, 'It seems logical that this organism has caused this damage, and we will try to kill the organism and support your organs."
They would rather attempt to get me to take antidepressants or anticonvulsants for pain. I even went thru IV steroids.
I can tell you in watching the Lyme crisis evolve over 15 years, that Lyme patients are marginalized, so we hide in the shadows, lest we lose our families, jobs, doctors, access to medical care, reputations, money, etc.
By the time you have achieve a remission or cure, what is left of your life?
You get marginalized, where to even the sympathetic, you appear to be what they call a 'lymenut'.
Any strong advocacy in my state is wiped out. Support groups that are reachable without long drives, gone. We endure silently or accept the other diagnoses we are provided.
I would not trust the CDC or FDA for that matter. If antibiotics are dangerous, what do they call the TNF blockers they advertise on TV. What do they call Raptiva? Just causing several fatal brain infections. Every generic TNF blocker, that ends in 'mab' can cause this infection. Every one! MAB is the nomer for monoclonal antibody. Humira, Rituxan, Enbrel etc. Look them up, see if they tell you about Progressive Multifocal Leukoenceopahopathy. Rheumatologists are handing this out like candy.
So, now faced with some unnamed autoimmune disease 15 years after Lyme, do I take one of these? NO WAY, no matter what they tell me I have other than Lyme, I won't believe them anymore.
Neither will I take huge doses of antibiotics that could at this time in my life, kill me just as fast.
I am one of the many, many people caught in this tar pit of chronic Lyme. If they don't believe that I have chronic Lyme, they won't believe any one has it.
I can produce the physician's notes, with the description of the EM. I can give them a date.
I can speak to a person on the street and they whisper, 'Oh I am sorry, I hear once you get it you never get rid of it." They know!
I have seen one LLMD, but it was years ago, and many miles away. I can't afford to do that anymore. If I do not see a sophisticated physician, able to treat a critically ill person, I won't be around in 5 years.
Those with Lyme, are in serious trouble, especially those of us, not living in the Northeast.
The hypocrisy of the CDC is laughable.
Why should I get a flu shot? My Hep B shots did not take. I am morphed now into a 'huma-bor'....half human, half borrelia.
My body dosen't work like a normal human and my doc, thank heavens, nows it. He is stunned by my inability to clear drugs, by the ever mounting drug reactions, by the confounding lab tests and my lack of recovery an elusive diagnosis.
My condition is so complex I get my care thru a tertiary medical center, yet for Lyme, I must go underground and trust some one with the courage to treat this disease, but yet, with no knowledge of my case, and no access to high level academic care. I have to hope that he/she can handle this complexity.
I am Anna Inga, and I have had Lyme for 15 years.
Posts: 11 | From Great Lakes | Registered: Feb 2009
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Your story a revelation. a revalidation of what is happening in my life. I am 70, diagnosed in Dec 08 with positive elisa and wb. Dr doubts Igenex or results other lab reports. So no meds yet. So confused..this is new to me.
-------------------- Rosann Posts: 5 | From Texas | Registered: Feb 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Anna,
Welcome. Thanks for your post.
Hey, I wonder if you are using your real name. If so, I suggest deleting the last name (and changing your sign in name) as you can be googled and your security would be at risk.
Do not put it past insurance companies to google clients names these days in order to find some reason to deny coverage.
Also, if you apply for a job, your prospective employer will most likely google your name. What you post here could prevent you from being hired for many, many years to come.
Not fair, of course, but these are just some of the security reasons for us keeping our identities private. There may be others, too, but insurance coverage (either health or life) and employment are the two that come to mind.
posted
keebler, anna is NOT her real name; i asked too! great minds think alike my friend! xox
anna, wow, what a powerful, touching story. i hope you will go to ACTIVISM forum and use your letter-writing skills to write this newspaper, gov., and your state's federal senators/house reps, etc!
i'm sorry you have gone thru so much like the rest of us. glad you found us anna.
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Anna your letter is awesome. You are a great writer.
Don't feel that you can't get treatment though. I live in the "south" where LD doesn't exist; and I do travel a few hours, but I am getting great treatment for LD.
Many Lyme doctors do not take insurance but will file it for you and your insurance co will reinburse you. Some actually do take insurance.
Please find a LLMD!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
Thank you all for your support. No, Anna Inga is not my real name. I have already lost a job due to this disease, when I needed this expensive IV treatment for my 'other diagnosis'. I asked off for a few days for the loading dose and was terminated without reason, without any prior discipline or counseling. This treatment costs $4,000 per month.
Fortunately, my husband's insurance covered me, and still does. I have not worked since. I am in my mid 50's now, so, it is not easy to find a job, as a disabled person, in this economy. I am lucky to have devoted family.
I believe the people we send to represent us in front of congress and put before the public must be able to understand the medico-legal-insurance industry, understand human psychology, and understand this disease.
They must be eloquent individuals, with compelling stories and credible histories. They must understand this disease medically. The opposition will use anything against the individuals who stand for those with Lyme. They also must have little or nothing to lose.
I would gladly speak for those of us with this disease, but, who is there to speak to? In my state, all advocacy is literally wiped out. It is a shame, as we have a lot of Lyme. In my state, some counties have more of it than others. You can draw a diagonal line across it, and those on one side are more likely to get it, than those on the other side of it, however, it is every where to some point.
Coming into my state does not mean you will automatically get Lyme Disease.
I do write, and I do speak, and have done both. In my professional capacity, I have even been a radio guest. I have no problem speaking in front of large audiences.
We no longer have a forum to listen. Infectious Disease 'professionals' have obliterated any forum for us, and sent any reasonable physician running for cover when you mention the disease.
The best one will get is the statement acknowledging your situation. It has been standardized and I think added to the curriculum of med schools and the orientation programs of medical institutions. It goes like this, "We do not understand the Lyme organism."
This disease is supposedly cured now with a few pills, and then it becomes chronic fatigue or fibromyalgia. If you push too hard it becomes a 'somatic disorder' or Munchausen, or if you bring in your kids, Munchausan by proxy, and you risk losing them.
Fortunately for me, I have not had children with Lyme, that I know of.
I have a son, who fought in the Iraq war and was wounded by a bomb there. He is home and doing OK. During the years he was in the Guard, he went to a base, yearly, and crawled around on the ground and camped in sand that was loaded with ticks, deer ticks.
He would come in after two weeks and see the medic and they would take out the ticks from all the hidden places they imbedded themselves, give him 2 doxy's and take blood, which was always negative. His blood will remain, always negative.
How will we ever sort out, what is injury from the war or due to Lyme? He will never be diagnosed with this disease, if indeed, he did ever catch it.
Every National Guard member in our state, and many from all over the US are exposed to this.
Can you see the military exposing themselves to claims of Lyme Disease caught on duty? We look for causes of obscure organisms, Gulf War Syndrome etc, when what is making people sick, may lurk in our home soil, and run through our blood long before any action on foreign soil.
Some day, this treatment of sick humans will be looked on as barbaric.
I will do what I can, manage my condition as best I can. I will attempt to get what I feel is reasonable treatment for this disease.
I do not understand how so much progress has been made against AIDS, and treatment is now so cheap that it can be sent to third world countries, and yet, Lyme goes undertreated, and for those who can get treatment it is horribly expensive.
What did the AIDS advocacy do, that the Lyme advocacy has been unable to do? We have benefited greatly from AIDS research, don't get me wrong. The AIDS advocacy has contributed greatly to the understanding of the immune system. I often wonder if it would be reasonable to ask them for advice or assistance. Surely, HIV infected people must get Lyme too. Then what happens?
Again, thank you for your support, and the open forum.
And yes, I am fully aware of posting and security, but I do want to thank you for your concern. It is valid. I would not be suprised that some one watches posts from some insurance company corner office.
Posts: 11 | From Great Lakes | Registered: Feb 2009
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lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
Anna, how touching, and my what a gift you have! My heart breaks for you and for all of us that have walked the lonely road of Lyme.
Thank you for sharing your story.
Lauren
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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posted
I do want to thank all the people that do advocacy. I know it is like talking to a brick wall. I admire their tenacity. I wish I had that kind of energy these days. It is frustrating.
Posts: 11 | From Great Lakes | Registered: Feb 2009
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Anna,
Thank you for sharing your story, as sad and discouraging as it is. It is so very difficult to keep hope in the forefront of ones mind when the grim reality is laid out so heavily upon ones shoulders.
Nevertheless, we must choose to keep faith, to believe in the inate goodness of mankind, and to stand firm in our knowledge that we have a disease crying for attention.
I will never hide in the shadows, or peek around corners. I will always affirm that this disease is real and devastating. I will never deny or forget to mention exactly what it is that has taken my life as I knew it from me.
If a doctor fires me, an insurance company cancels me, or I get locked in the looney bin, I refuse to be quiet.
Yes, morphed, half human, half lyme. But I will never give in to the demoralizing treatment.
Again thank you, for your story, for you offer to do what you are able. A voice like yours can carry far.
Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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bettyg
Unregistered
posted
tincup, pop in here; we've got a NEW RECRUIT anxious to get involved more in LYME ACTIVISM!!
anna, you are one gifted person writing and it is so effective and tugged at my heart strings! keep it up girl! nice meeting you and BIG WELCOME TO OUR ADVOCACY PROGRAM!!
please go to ACTIVISM and look for tincup's post needing help on getting info for 50 states; perhaps you could get your state/surrounding states together since you have your RN background.
for me, it's too complicated for my neuro brain of 39 years, so i'm not going to even attempt to do it. i can do others things better, and those are the thigns i will concentrate on doing!
This post very accurately describes what happens to lyme patients. I can relate to all of it. In my case, I was sick for about as long as you detail with bad neuropsychiatric symptoms. I could never get help. It took 12 years before a visit to columbia, precipitated by a positive western blot, revealed moderate global hypoperfusion and finally demonstrated that I had a real disease in my brain. Unfortunately I first became ill in 1990 and then it dramatically intensified in 1996. the destruction to my life was terrible and lead me down the most awful paths. Like you I lived in the midwest, but possibly contracted the disease on visits to the northeast when I was younger. For many years I lived with encephalopathy and lived in fantasy worlds, cut off from the world and convinced that whatever was wrong was going to kill me and would only be found on autopsy. I formed many relationships with people based on lies, because if I told the truth they would not be my friends. For many years I had a more or less chronic 'brain tumor' headache which at times drove me insane and even to the mental hospital where of course I was told I was 'delusional'.
Now that I have been diagnosed and extensively treated, I am in my 30's living with my parents with a long history of personal destruction behind me. What can I do? My college grades were not good as you might imagine and now that I want to reform my life and put things back together, I find society slamming every door in my face. Despite it all I am intelligent, but can see no future beyond jobs at the local wal mart. No jobs, no school, no family or relationship, no future. My brother and sister are completely distanced from me from my behavior when I was ill. What happens when my parents are gone?
So I can relate to your posting. There needs to be justice for lyme patients. They have been terribly wronged.
Posts: 2 | From middle'o nowhere | Registered: Feb 2009
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Hi Anna.
Your post certainly seems to sum up our share of trials and trevails.
Certainly honest and realistic.....and sad.
I think that one of our biggest obstacles in getting the same
Type of attention as AIDs did, involves the logistics of all of us.
Very difficult to unite people who can't answer the phone,
Or read the computer, or even know they have Lyme.
Hopefully as we educate others, we will grow in force.
Voting power really counted with AIDs.
So did the celebrity turn out.
I wish that President Bush, that has/had Lyme
Would now (out of Presidency) bring some action for us.
Maybe not.
There are a few famous people who have Lyme.
Unfortunately, the "normal" public cannot wrap their brains
Around our multitude of symptoms. Or the IDSA stance of "easily erradicated".
Let's not forget the mindlessness of those
Who believe thier MD's to be all knowing Gods.
Sending you positive thoughts and prayers.
My LLMD in Louisiana does take insurance.
I was born in Wayne County Hospital.
Close to you?
Hang in there and welcome to the board.
Here we know your pain, know your struggle, know your troubles as well.
If nothing else, we can walk a mile in your shoes.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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i hope you will go to ACTIVISM forum and use your letter-writing skills to write this newspaper, gov., and your state's federal senators/house reps, etc!
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