posted
Hello all. Back in the summer of 2002 I went to my doctor with a rash from an insect bite shaped like a target (.... I now know it's a bullseye rash). She told me she had never seen anything like it before. Another doctor came in and he too had never seen it before.
I was given a topical cream and seven days of Erythromycin. After two days of vomiting I called and was told rather than a new RX just stop taking it and continue the cream. A few weeks later I got the flu and was told not to come in because they can't do anything unless I became dehydrated. I went in a number of times after that with problems like fatigue, not sleeping, depressed, trouble staying focused, sexual issues. I'm also not a big person. At the time of the rash I weighed 111 lbs. Within 8 or 9 months I was down to 102 lbs. I was told it was depression and prescribed anti-depressant.
The last time I went in for this issue I saw the same doctor I saw for the rash. I cried almost the entire appointment. I told her I was ripping my eye brows and eye lashes out. She asked me if I was going to kill myself or my children. At that point I knew I couldn't tell anyone about what I felt again. She told me it was PPD from my son who I had in '01. I was given another anti-depressant and sent on my way.
I now have memory and balance problems (along with those listed above and more). One of my memory lapses involved knowing that I took Erythromycin but not being able to remember why. After a few days I remembered the rash. I did a Google search of 'target rash'.... Long story short, I have a new doctor who believes this is/was Lyme. I went for an MRI today.
I'm wondering if I should sue. It would be one thing if I just showed up with all these wierd neurological problems but they saw the rash and then just sat back while I got worse telling me it was just PPD. I'm just furious right now that if I had the proper treatment years ago none of this would be happening.
Posts: 7 | From Pennsylvania | Registered: Apr 2009
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Starfall1969
Frequent Contributor (1K+ posts)
Member # 17353
posted
I am so sorry.
I can't say that enough.
But unfortunately, it's not uncommon--I went through the same sort of thing, and I'm not the only one.
As much as suing would be such a justifcation, I doubt you'll get very far.
The legal system is just not on our side.
I just hope that your new doctor gives you the help you need!
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
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posted
I didn't realize it's so common for a doctor to see the rash and not know it's lyme disease. I could almost understand her not knowing what that rash was if I lived in a state with few reported cases but my state is the third highest in the country and my county is one of the five highest in our state.
I am just so mad right now!!!
Posts: 7 | From Pennsylvania | Registered: Apr 2009
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posted
Yes, very common experience unfortunately. You are right to feel angry. Same thing happened to me, went 15 years w/o a diagnosis. I finally developed a rash, and it was misdiagnosed as RINGWORM. This in CONNECTICUT, the birthplace of Lyme Disease.
It may make you feel better to write a letter to all the docs who missed the diagnosis, and let them have it. I did that, included pix of my rashes. I was civil in my letter, but basically let them know that I suffered needlessly all these years because of their ignorance about this disease. I must have written to over 20 doctors.
So I'm saying if you can't sue them, at least do something that let's them know they screwed up BIGTIME.
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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posted
I'm not time barred as of yet. Legally I have two years from the date I discover malpractice or an ultimate seven years. I still have about two months. I just don't know if my time would be better spent dealing with this or suing on top of it. The letter idea sounds like it would be spiritually uplifting but I could just imagine that woman rolling her eyes and muttering whatever. I've already thought of something similar but it involved actually showing up at her office. Don't worry, just to yell.
On a side note, I would like to say how absolutely opposed to emergency rooms. So much so that when I fell and broke my tail bone earlier this year I refused to go there. After two days I reluctantly went to my current doctor. After X-Rays he confirmed it was broken. I only mention this one because it's a 'confirmed' break amoungst many of my falls. I loath emergengy rooms.
In my initial post I stated how I called my doctor a month after the rash because I had the "flu." That was a tad incorrect. In the soupy mess I now call my brain I forgot that I went to the ER. I honestly still don't remember being there (give me time and I will). I only know I was there because I found a hospital report in my paperwork. Apparently I had rashes all over my body and was running a fever. In their recommendations it says I was referred back to my doctor. I know when I called the doctor I was told not to come in. I just don't understand how there weren't red flags all over the place for them.
BTW, the rash at the ER was more of a .... everytime I scratched myself, even lightly, I ended up with giant welts. I thought Lyme was bad enough but could my secondary rashes mean I have something else also?
Posts: 7 | From Pennsylvania | Registered: Apr 2009
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bettyg
Unregistered
posted
welcome mm; welcome to the NOT diagnosed club! we all know how you feel.
me 39 yrs. chronic lyme; 34.5 yrs. MISDIAGNOSD by 40-50 drs...stinks; doesn't it!
here's another reason you were NOT diagnosed promptly and correctly:
Betty's suggested POSTING GUIDELINES . many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``TWICE`` after each paragraph; we need that space for comprehension.
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. ------------------------------------------------------
People seeking doctors might be able to get help from their state online information and support group. Nearly 3,400 people belong to state groups. Some of the groups are small but more than 20 of them have 50 or more people and seven have over 100.
The groups are moderated and you have to apply. Most don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately. *******************************************
This explains the medical politics around lyme WHY you need an ILADS-educated or ILADS-member LLMD (and there are also some ILADS-member LL NDs (naturopathic doctors):
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" -(author's details at link)
As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Excerpts:
Meet the players
The opponents in the battle over the diagnosis and treatment of Lyme disease are the Infectious Diseases Society of America (IDSA), the largest national organization of general infectious disease specialists, (and)
and the International Lyme and Associated Diseases Society (ILADS), an organization made up of physicians from many specialties. ( www.ilads.org )
ILADS, by contrast, asserts that the illness is much more common than reported, underdiagnosed, easier to contract than previously believed, difficult to diagnose through commercial blood tests, and difficult to treat, (especially)
especially when treatment is delayed because of commonly encountered diagnostic difficulties ( http://www.ilads.org/guidelines.html - Accessed April 6, 2007). . . .
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
- Full article at link above, containing MUCH more detailed information. -===
Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed in the Savely article due to space limits. Still, any LLMD you would see would know how to assess/treat if others are present. ==========================
TESTING
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM." ===========
ILADS The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases. =========== i'm going to try to post a link here with info on SUCCESSFUL LAWSUITS WON ON LYME DISEASE from www.lymenet.org site! look on LEFT side :legal resources" !! all WINNERS!
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posted
OMG!!! I can still write in paragraph form.
That's the sweetest compliment I've had in a long time.
Seriously though, I thought I was the only one who had difficulty reading paragraphs. My eyes tend to wonder. Glad to hear it's not just me.
I do apologize.
Posts: 7 | From Pennsylvania | Registered: Apr 2009
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Take a look at this link. It takes you to a section of a book about lyme disease that talks about why it is so hard for doctors to come up with the lyme diagnosis.
The doc that wrote this book is a lyme doctor. Years ago, he was misdiagnosed as having fibromyalgia. This went on for years. Finally, he got the lyme disease diagnosis.
He writes about how the same thing happened to Amy Tan and many others. And, he tells why it keeps happening and happening.
Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Regardless of what you decide to do, just make sure you have an ILADS trained LLMD treating your lyme.
It is important to have long term combination treatment and be properly evaluated for coinfections, hormone imbalances and a host of related issues.
IDSA Dr's will not do any of that.
I was misdiagnosed with fibromyalgia for 21 years, and still would be if I had not done the research myself.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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posted
MnM, Take your story an subtract rash for the actual tick. The tick tested positve and yet i did not receive proper treatment.
Having said that i would strongly urge you to either let it go or channel it int your recovery. There are many days where i strugge to excercise ....then all i think about is my anger...gets me through my workout which kills lyme and helps detox.
Sad or happy to say you will learn some of the most important lessons in life because of this disease. One of which is "time is precious"...so write a few letters. Many of those doctors did not act in malice so try to educate. Focus on what is under your conrol now...thats all any of us can do. The rest of it is wasted energy..
Dave
-------------------- On my journey to wellness - One day at a time. Posts: 989 | From NJ | Registered: Sep 2008
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bettyg
Unregistered
posted
dave, outstanding reply above! KUDOS TO DAVE; you stated it like it is.
posted
Wow- your case sounds VERY much like mine. If you think you might possibly ever have the energy and support for action, you definitely want to catalogue everything, and keep a diary if you possibly can-- it's ok to make an entry like: "today I am too sick to make much of an entry". (and maybe briefly describe some symptoms). Do what you can, but don't over-do; it's not worth suing if it takes energy that's the difference between going chronic and not! DaveS
quote: I'm wondering if I should sue. It would be one thing if I just showed up with all these wierd neurological problems but they saw the rash and then just sat back while I got worse telling me it was just PPD. I'm just furious right now that if I had the proper treatment years ago none of this would be happening. [/QB]
Posts: 4567 | From ithaca, NY, usa | Registered: Nov 2000
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
MnM, your story is similar to mine. Despite an engorged tick embedded just above my navel on my 8-months pregnant belly and subsequent bull's-eye rash that was raised and itchy, I was told that it was postpartum depression when I started to have severe symptoms. I was also told I had conversion disorder (psychosomatic illness) because I secretly didn't want to care for my 3 children.
This was absurd because I'd taken care of my two oldest boys for 5 years, one of whom is severely disabled, just fine.
There was no concern on the ob-gyn's part for my baby's safety. I begged for a c-section and was brushed off. My son is now positive for Lyme and has been on and off antibiotics since he was born.
I thought I had a great malpractice suit and called a lawyer. They said there was no way to "prove" the ob-gyn's decision caused my son's Lyme. There was no way to tell if he'd gotten it immediately or if it could have been prevented by the ob-gyn's actions.
I've also called a lawyer when I was told by an ER doctor that if I didn't stop screaming he'd wheel me to the parking lot where I could scream all I wanted. I was in severe pain and the nurse told me to be quiet! I was bothering the cancer patient in the room next to me. They then gave me so much tranquilizing drug that I nearly stopped breathing.
The lawyer's gatekeeper told me there was no case.
I finally realized that there is no justice for Lyme victims right now. I then decided to focus on me and my son. I still get very upset when I think of all the nastiness directed towards me since I became sick in 2003, but I've actually managed to forgive some people and my life is better for it.
Work with a Lyme-literate doctor. Truly, it's the best option.
God bless and take care. - Lymelady
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. 
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