“CDC Wonder” database keeps us wondering about actual Lyme stats
Pat Smith is the President of the Lyme Disease Association and was recently named to the federal Tick-Borne Disease Working Group. The following blog is re-published from the LDA website.
By Pat Smith
The Lyme Disease Association (LDA) reports that the total number of CDC reported 2016 Lyme cases are now available. Never saw them? Not surprising. In the past, the CDC consistently reported Lyme numbers on a weekly basis, as they do with the other reportable diseases in its MMWR Report, which is published weekly. The last weekly case numbers reported, however, were reported one year ago for 2016.
The CDC annual year end summary of reported Lyme case numbers in MMWR–confirmed, probable, and total–were consistently reported in the past about each 3rd week of August for the preceding calendar year. The past two years, that system has changed. In fact, the 2016 numbers came out in November 2017, and they are now very difficult to locate. Thinking I had missed them, LDA wrote and asked CDC at the end of October when/where they were to be published, as the CDC website message about new reporting was unclear about that issue. CDC sent LDA two links when they came out in November.
In the summer, the LDA had asked CDC informally in a phone call why the weekly numbers were missing. CDC indicated it no longer publishes the weekly numbers due to states saying it was too confusing, and they did not want them published, and The Council of State & Territorial Epidemiologists (CSTE) really had control over what is published in MMWR. None of that made sense to me at the time, and it still does not make sense, and no other diseases were affected by this change in practice.
Some questions about the new reported Lyme data include why is the state of Hawaii no longer listed as N, not reportable, as it has been in the past, but only as 0 cases? Big difference between the state not reporting a disease and the CDC indicating there were 0 cases, although there could be 0 cases. Why are New York City numbers broken out from New York State numbers in one area and combined in another? Why has the State of New York never had a note on the CDC report indicating that a huge % of its counties are not even included in CDC reported numbers, a question I have posed to CDC in the past.
The LDA on its NY case map indicates “In 2015, 25 NY counties used a sampling method to determine Lyme disease case numbers. The Council of State & Territorial Epidemiologists (CSTE), charged with surveillance, does not allow CDC to include those estimated numbers to be reported by CDC in the national counts. Thus, NY State had 8,272 Lyme cases including those 25 county numbers by State count, but CDC was only able to report nationally 4,314 Lyme cases for the State of New York.” CDC could use a short note to indicate that only xx counties are represented in its reported case numbers for New York. This omission of reporting at least 25 NY counties in a high incidence state affects the entire total case numbers for the US, plus it can influence policy in New York if those policy makers do not understand the system.
The CDC has a totally new system (new MMWR mechanism) in place for the final numbers, called CDC Wonder. That name seems appropriate as this whole issue leaves me wondering why we even have a Lyme surveillance system that is highly inaccurate, beginning with the surveillance criteria, which CDC disclaims responsibility for—CSTE is responsible. The CDC Lyme surveillance system has already had a huge impact on patients’ access to care, another issue for another discussion. Why did CDC change the reporting system to one that is user unfriendly, did not fix some of the issues the old one had which carried over, and perhaps created some new ones?
2016 Final CDC Numbers
The three states with the highest Lyme case numbers are the same as in 2015, from the Mid-Atlantic region: Pennsylvania, New Jersey and New York, the latter clinging to third place despite at least 25 of its counties not included in the reporting. Also note, Massachusetts, often in the top five states in the US in Lyme cases, is not in the top 15. The CDC told the LDA that Massachusetts has taken a new approach to surveillance and we would need to talk to Massachusetts for details.
The LDA has ranked the top 15 states based on the 2016 CDC Lyme case number summary. The chart below has the top 15 states ranked in order of highest to lowest case numbers, followed by the CDC reported Lyme case number, and then the number adjusted x10 for underreporting.
Links CDC gave to LDA:
https://www.cdc.gov/lyme/stats/index.html or you can access them through the new MMWR mechanism (go to the to table 2i at the following link) https://wonder.cdc.gov/nndss/nndss_annual_tables_menu.asp
Lyme Total Cases 2016 US 36,429——————————————————364,290
LDA NOTE “In 2015, 25 NY Counties used a sampling method to determine Lyme disease case numbers. The Council of State & Territorial Epidemiologists (CSTE), charged with surveillance, does not allow CDC to include those estimated numbers to be reported by CDC in the national counts. Thus, NY State had 8,272 Lyme cases including those 25 county numbers by State count, but CDC was only able to report nationally 4,314 Lyme cases for the State of New York.” 2016 county number used as yet unavailable.
2016 number of counties used for reporting as yet unavailable. However, in 2016, NYS reported a total of 7,543 cases, of which CDC was able to report 3,882.
LDA Chart of all states in alphabetical order for 2016 final reported case numbers
| State | 2016 Total | 2016 Confirmed | 2016 Probable | 2016 Incidence |
| Alabama | 38 | 17 | 21 | 0.3 |
| Alaska | 15 | 6 | 9 | 0.8 |
| Arizona | 13 | 8 | 5 | 0.1 |
| Arkansas | 2 | 0 | 2 | 0.0 |
| California | 134 | 90 | 44 | 0.2 |
| Colorado | 0 | 0 | 0 | 0.0 |
| Connecticut | 1748 | 1238 | 510 | 34.6 |
| Delaware | 506 | 391 | 115 | 41.1 |
| DC | 103 | 66 | 37 | 9.7 |
| Florida | 216 | 132 | 84 | 0.6 |
| Georgia | 4 | 4 | 0 | 0.0 |
| Hawaii | 0 | 0 | 0 | 0.0 |
| Idaho | 17 | 9 | 8 | 0.5 |
| Illinois | 237 | 233 | 4 | 1.8 |
| Indiana | 152 | 127 | 25 | 1.9 |
| Iowa | 232 | 76 | 156 | 2.4 |
| Kansas | 39 | 16 | 23 | 0.6 |
| Kentucky | 33 | 16 | 17 | 0.4 |
| Louisiana | 7 | 4 | 3 | 0.1 |
| Maine | 1487 | 1151 | 336 | 86.4 |
| Maryland | 1866 | 1274 | 592 | 21.2 |
| Massachusetts | 198 | 146 | 52 | 2.1 |
| Michigan | 221 | 159 | 62 | 1.6 |
| Minnesota | 2126 | 1304 | 822 | 23.6 |
| Mississippi | 1 | 1 | 0 | 0.0 |
| Missouri | 10 | 1 | 9 | 0.0 |
| Montana | 17 | 12 | 5 | 1.2 |
| Nebraska | 14 | 10 | 4 | 0.5 |
| Nevada | 15 | 4 | 11 | 0.1 |
| New Hampshire | 891 | 691 | 200 | 51.8 |
| New Jersey | 4350 | 3332 | 1018 | 37.3 |
| New Mexico | 1 | 0 | 1 | 0.0 |
| New York | 3882 | 2623 | 1259 | 13.3 |
| North Carolina | 272 | 32 | 240 | 0.3 |
| North Dakota | 32 | 9 | 23 | 1.2 |
| Ohio | 160 | 122 | 38 | 1.1 |
| Oklahoma | 0 | 0 | 0 | 0.0 |
| Oregon | 61 | 13 | 48 | 0.3 |
| Pennsylvania | 11,443 | 8988 | 2455 | 70.3 |
| Rhode Island | 903 | 535 | 368 | 50.6 |
| South Carolina | 51 | 25 | 26 | 0.5 |
| South Dakota | 11 | 8 | 3 | 0.9 |
| Tennessee | 25 | 7 | 18 | 0.1 |
| Texas | 71 | 31 | 40 | 0.1 |
| Utah | 19 | 12 | 7 | 0.4 |
| Vermont | 761 | 488 | 273 | 78.1 |
| Virginia | 1350 | 976 | 374 | 11.6 |
| Washington | 31 | 14 | 17 | 0.2 |
| West Virginia | 368 | 297 | 71 | 16.2 |
| Wisconsin | 2295 | 1504 | 791 | 26.0 |
| Wyoming | 1 | 1 | 0 | 0.2 |
| U.S. TOTAL | 36,429 | 26,203 | 10,226 | 8.1 |
Thank you Pat for all the work you do for us who suffer from Tick Borne Illnesses. Unfortunately this has been going on for years and I fear will continue to go on for years. Until all 300,000 (?) of us unite and make ourselves heard the next 20 years will be the same as the last 20 years. Tick Borne Illnesses and the lack of medical coverage should be “in everyone’s face” the way HIV and ZIKA is, on TV, radio, in newspapers, on computers, and on people’s minds, every day!
NOTHING, about all the committees, working groups, or research is on media. We are preaching to ourselves!
I understand that even with the limiting way the CDC allows cases to be counted, these numbers still give a clue to the trends in Lyme cases. The numbers are so skewed to begin with it is hard to know what the real trends are other than extremely alarming. We need new people at the CDC who care about people, not profits.
Since 2012 CDC has been saying 300,000 confirmed cases of Lyme?? When are they going to wake up and realize we have an epidemic not endemic. What about the cases that are not reported by the medical professions? Thank you, Pat Smith for being part of the Tick-Borne Disease Working Group, you have your job cut out for you.
THANK YOU! Francine…..wow…I’ve been yellin’ from the rooftops for a Decade now…tryin’ to talk common sense to those who claim to represent us…or be our Advocate… Now that I see more and more Lyme+Victims(so sad) are speakin’ the same tune…..and seein’ it for what it is….I’m no longer in the battle alone My take is this TBD Working Group is our last chance…last hope…Some who are on the TBD Working Group in the past had personal agenda’s…I’m in high hope…all of them can discard the past mistakes…and move forward with EXACTLY what is important!
Thank you. I find this to be inaccurate. I swear that I picked up the disease in Hawaii. Because I returned ill. I was recently diagnosed after 30 years. Change needs to happen. And we need to educate the world!!! Not to ourselves.
The CDC cares about what big Pharma orders them to care about. There are many serious infectious disease problems in the USA that get zero attention by the CDC because they don’t care about them. that is not their marching orders to care about people infected with protozoal infections, worms, or anything else Pharma doesn’t have something specific to push to make big bucks.
We the People need to create our own CDC the People’s CDC and set up a credible alternative to the misinformation, negation, and cruelty of a CDC bled out from the inside by Pharma.
KP…….wow thumbs up ….totally for the People’s CDC…wow…some of these reply’s just make me smile….awesome…. more and more people “get it”
The number of cases listed for my state is laughable. What is not funny is that no one treats lyme in this state, because they are told it does not occur here. This is despite finding it in any number of animals and ticks. Or if they do treat a case it is for a short time and do not report it. Why would anyone report a case? It would only cause them grief. I know someone who has been unable to get adequate treatment because she was told her test was negative. No mention of how many false negatives there are.
I feel that the AMA is not pushing their members to identify Lyme disease. I had my lipids done and told my doctor I had severe pains in my hands shoulders and knees, which are artificial and was told my lipids were great. As the pains and stiffness in my joints got worse I took it in my own hands to find out what was going on. I called the PC and said I wanted to be tested for Lyme disease, he arranged the test and called me two days later and told me I was a good diagnostician, I had Lyme disease. It’s been about a year and a half and though the Dioxin did its work, I suffer joint and muscle pain every day and there are nights that sleeping is almost impossible. Nsaids cause digestive distress after four of five days. I feel a late diagnosis is responsible for neural pains I now suffer with daily.
We would encourage you to consult a Lyme-literate practitioner, who may be able to help you with your lingering symptoms.
I worry more about the people who have been misdiagnosed with , for example MS, Parkinson’s, ALS. These people could be helped if providers were less concerned about who’s keeping up with numbers and who isn’t and more willing to do the simple test and send it to a reputable lab. My LLD told me he only trusts 3 labs in The USA to accurately run the Western Blot.
It was 12 years before I was diagnosed in 2002. My chronic Lyme has left me disabled and in constant pain. But the worse emotion is the feeling of helplessness from the medical community in its present structure. They have become stagnant in their approach to healing, thinking that they know all there is to know and some pill they can serve up will be the answer. The answers are in the depths of the micro organisms that have invaded people causing many of the “negative diagnoses” illnesses like MS, Alzheimers, Parkinson’s, ALS, fibromyalgia, etc. Instead of looking for the cause, they are trying to find the right pill for the symptoms. The real physicians, like those treating Lyme Disease, are targeted for not “walking in step”. I have kept informed through LDA and my local chapter and I can see progress so I hope everyone will keep the faith. Eventually our Lyme Disease researchers will have answers that will have to be accepted. I pray I can live to see their positive results.
I was recently on the CDC Lyme disease website, trying to find the same information about 3rd stage Lyme disease that was on the website in 2014, 2015. Guess what? I can no longer find it. That information seems to have disappeared. Therefore, I am not surprised they are skewing the number of cases in the US downward. It’s a giant scam! And it really makes me mad!
this was an analysis by claims data,
http://www.ajmc.com/contributor/robin-gelburd-jd/2017/07/a-window-into-lyme-disease-using-private-claims-data
I happen to be a Lymee among at least 8 that I know of living in Hawaii–though I don’t believe any of us got it while living here; we either moved here and then learned we had it (like my Self), or lived on the Mainland for a while and returned having it.
I think appropriations are keeping down the numbers to finance the lesser threatening diseases to help the pharma and ins. industries bottom line. Looks like deliberate fudging of the books.
How do you get the right count when doctor’s don’t know how to test for Lyme’s. In May 2014 I found 2 ticks on my back. A few days later 2 bull’s eyes. Been sick since. I was a very healthy 54 yr. Old woman. Can’t get the help I need.
I personally have 3 kids who tested CDC positive in Texas in 2016, but I am sure they are not counted in the Texas numbers. My pediatrician called our local health department to ask what to do with theses positive tests and they told my kids’ Dr that they were alll false positives because the ELISA test was not done first. She believed them. What a crock. Since then, two more of my kids have been diagnosed, as well as my husband and I. We have 7 out of 8 of us diagnosed with 4 CDC positive borrelia tests (with several co-infections), one clinical diagnosis and two CDC positive only for co-infections (but with bands present for Borrelia). We have not once been contacted by the CDC.
OMG! God Bless your family….I will add you into my long list of prayer…ughh…when it’s kids…I just don’t know what to say….it’s awful this is allowed….Not only do I pray for each Victim…I pray for truth…for a cure..or at least an honest effort of treatment and tests.
Pat, I’m so glad somebody with your awareness level is on the Tick-Borne Disease Working Group! I hope the others will listen, learn and take action to help improve the reporting methods, and all the many injustices currently causing people across America (and the world) to suffer.
Pat- Thank you for all you do! As a RN, CLNC, I find this reporting issue to be deeply concerning and it continues to make me ask 1 question that I ask when I research Lyme Medical Policies by all of the insurance companies offering health insurance in the USA (published online): ‘Why is one infectious disease singled out from all other infectious diseases with regard to scientific management of the causative infectious organism?” (Ex: spirochete causing syphilis has treatment recommendations of months of antibiotics. Spirochete borrelia- 30days) Which leads to: ‘Why is Lyme being singled out without consideration of other Tick-borne infections commonly seen in patient’s with Lyme?’ Majority of the medical policies do not change recommendations if a patient has more than 1 tick-borne illness.’ As an IV Therapy RN, it’s clear that someone with 2 infections… say pneumonia and a urinary tract infection, may require multiple antibiotics in different abx classes to eradicate different infectious agents, and longer duration of treatment because their immune system is fighting more than 1 ‘invader.’ That’s a norm in the I.D. World. So why not with Tick-borne illness.
I’m not a conspiracy theorist in any way, shape, or form… I’m a healthcare investigator and caregiver. I’m forced to ask what is it that don’t I know that’s driving these bizarre recommendations for diagnosis and treatment. And why is there also a surveillance anomaly not common with other vector borne diseases? Omitted counties not included in disease tracking in one of the 50 states ranking incidence in the top 5? How does that ever make sense? And what other diseases have similar tracking constraints utilized by the CDC?
Is it time to focus on calling these diseases “multi systemic infectious diseases syndrome” and ask the CDC to report all tickborne illness in every county and state? Do we need to immediately demand that the World Health Organization gives an ICD-10 code for Chronic Lyme with additional tickborne illness, or Chronic lyme on its own- because presently there is no code for these. (But- just in case you get sucked into a jet engine-Subsequent encounter: be assured that there is an ICD-10 diagnosis code for that) Will redefining the problem with a different name foster a change in surveillance, recommendations,and treatment?
Is it time to reach out to insurance company medical policy developers and ask why they do not consider all tickborne illness and instead single one out? (For those who have done that).
I do know this- it is not the time for silence. We have seen change happen throughout the USA this year when people came together and speak up. Is this the #MeTooLyme moment? I’ll use my last bit of energy and voice to give us a chance at being treated like people with other infectious diseases.
Who’s joining me?
Caryn……I’m joining you! You made some VERY valid points and beyond! I love your comment….the Bizarre recommends…for tests-treatments …comment…let me know if you ever get a true workable answer for that. Also I want to add, I noticed you are an RN. Let me say thank you 10X over…RN’s should make more than the Doctors. When I was being passed from Oathless Doctor to Doctor…I met some RN’s who did not like what they where doing to me….they knew! They wanted to help. Also, in my darkest hours a Decade ago with Lyme+ I met an RN who got hit with Lyme and Bartonella bad..on MDJ Lyme…only to find out she took care of my Grandmother in another town hundreds of thousands of miles away!!! She too…was hit hard with her Lyme and Bartonella…as we spoke over the years…and she got stuck in a “poor me” spot…I mentioned for her to get involved! Help Lyme+Victims like her-self!!! Guess what…she did..she has a big Lyme Group in her area…and she made Medical HISTORY! by providing an awesome man, a Veterinarian Dr, B who made the ACCURATE test for Bartonella!!! He found two strains in her and recorded them in document that she got from Ticks and Mites!!!! I need to get a sign that says……have you hugged your RN? today and every day?…….speakin’ of silence, ..I have not been for a Decade….who’s listenin’ to me now?
I was diagnosed with Lyme in July of 2017. My doctor told me I would be getting a call from the CDC and they will require the rest of my family be tested. I’m still waiting for the call.
I diagnosed myself and demanded I be tested in the emergency room. I knew the symptoms. They didn’t. I was given 30 days of doxy and was told no more when I said I was still stick.
We live in north central Pennsylvania.
My nephew was bitten by a tick in 2007 and is still sick from TBDs. I was bitten in 2015 and I am still sick. My Mother was bitten in 1999 and died from TBds in 2006. We all were bitten at my home in NE Pennsylvania. I have yet to find a doctor, who accepts insurance here who will treat TBDs. I have asked Medicare for referrals. Medicare gives me names, when I call for a appointment, I am told the doctor no longer participates. Any doctor willing to treat demands payment in advance. Medicare and my other health insurance has refuses to reimburse. The ER where I went is still billing me for my visit. I was also told the CDC would contact me. Doubt they will!
I had high fever and typical flu like symptoms with overall body ache. Blood test was highly positive for spirochete infection but the results were dismissed when further testing was negative for Lyme’s disease, B burgdorferi, and syphilis. I self diagnosed that I probably had Borrelia miyamotoi and my doctor agreed to start doxycycline. My fever went from 103-104 to under 100 the day following the first dose of the antibiotic. I had been on another antibiotic which had no effect. Within a day of two of the doxycycline I began having the Jarisch/Herxheimer reaction and I had a full body inflammation. My legs and thighs doubled in size. This reaction was worse than the original infection. I had been told by my doctor to not take any aspirin or related medicines because both my kidneys and lever were poorly functioning. But I did take aspirin after several days of the inflammation because of the severity. My case was never reported as a spirochete infection because at the time there were no tests for B miyamotoi even though the original blood tests was highly positive for spirochete infection. How many more of these types of infection go unreported? It took me almost 3 years to recover from this infection and the Jarisch/Herxheimer reaction. And what is the probability that I did not have a spirochete infection and still have the J/H reaction?
Is there a way to know if your case has been reported? When I got my results I was told the CDC would contact me, but has yet to do so. That was in October 2016.
I have no idea where I picked it up, but have lived in Hawaii, Colorado and Washington and have traveled quite a bit out of the country. I’ve felt tired my entire life so hard to know when it was contracted.
The CDC is shady, this is unfortunately no surprise as they continue to manipulate data to their benefit. Sick.
I’m in tears reading this because I am at my wits end trying to get treatment for Lyme disease that came up positive when I was finally tested after a year being sick bye my primary care physician. I was referred to Yale rheumatology because my joint problems not to mention my symptoms included fatigue fevers and the inability to walk without extreme pain from swollen fluid filled joints. it was going to be two weeks before I can get into Yale to see a specialist and my doctor felt treatment had to start immediately rather than wait the two weeks before rheumatology saw me. it sounds bad but I don’t know if that was the mistake for the two weeks to take antibiotics because when I got to Yale they said I didn’t seem to have lime when they tested and although blood tests were off the charts, rheumatology felt the blood test we’re consistent with rheumatoid arthritis. I received no further treatment for Lyme disease and years I suffered only to get the worse instead of getting better! that was 10 years ago and I’ve lost some symptoms only to gain new ones, some even worse! it saddens me because I’ve been treated as if I was crazy every time I said please go back to my records I was positive with Lyme , I know it I have Lyme disease but I was ignored but I never got a straight answer as to what it really was after they figured out it was not RA like years later they previously thought, but they were no longer sure what it was. I walked out of that office 2 years ago and I have not been able to find another doctor to treat me for Lyme disease that takes my insurance and I’ve just about given up! the CDC is responsible for allowing Lyme disease to go under the radar and we the people are the ones who suffer with this debilitating disease that they years back called nonexistent! Thank you for letting me realize I am not alone! Elle Marie
Dear Elle Marie, I have said this many times before. I have always signed my name to what I say. We (300,000 just this year) are ALLOWING this to happen to us. Those suffering from TBDs should be treated FIRST! Money should be used to force insurance to pay for treatment. Medicare and Medicaid and other insurance should be made to pay. Insurance pays for gambling addiction, acholism, drug addiction and does NOT pay for TBIs???? Hear more about these diseases in the media than TBDs. Where are all the ads on TV, radio, newspapers, subway ads, on computers. etc.? When money is being used for class action suits, as in Texas,THEN money can be used for research, working groups, committees, etc.. I was bitten by a tick in 2015. I am also still very sick. I have Medicare, BC/BS, GHI, SHIP, and an AARP Long term Health Policy, ALL do not pay. My nephew has been sick since 2007. I have to pay his medical bills as well. My Mother died from TBDs. I have appealed for help from Schuer, Gillibrand, Cuomo, The AG of the state of New York, etc,, etc. Do you hear anything in the news, constantly, about our situation? NO! It was pointed out to me by others, not experiencing TBDs, that if TBDs were a pandemic, why isn’t it in the media? What can I say? I also have run out of money, so I no longer receive medical treatment. I don’t want lip service, I want treatment for all of us!
I know I want my life back. This entire situation is a disgrace! Don’t even think this comment will make it as a reply comment. I am extremely frustrated for all of us! Any ideas out there???
I live in northern Illinois. I was diagnosed with Lyme disease 3 years ago and treated with Doxy. My symptoms got better for a while and then gradually worse. I saw 2 different ID doctors in the same practice. The junior doctor emphatically claimed that there was no such thing as chronic Lyme disease. He said that there were no cases known to the medical profession of cases lasting more than 6 months especially for those who were already “treated” so he declared that I could no longer have this illness as I contracted it 3 years ago! I also saw the senior physician in the practice and he said that chronic Lyme disease (longer than 6 months) was possible but rare. However, he stated that there was no known long term effective treatment so he referred to to the Mayo clinic which I will soon contact. I echo the comments of many others on this site. Seems as though the CDC is under reporting and not taking the situation seriously at all. When there are hundreds of thousands of people contracting this debilitating disease every year the CDC and our elected officials need not to sweep this under the rug anymore! Too many lives and caregivers have sacrificed so much already!
Over and over, the same story. I can hardly move or function today. This situation is beyond disgusting. When are we going to unite and say we demand treatment, not words, or the same old same old??
I am a retired medical lab technologist. In 2015 when I ran my own Lymes test that was positive (Igg) the lab was not required to report this. So where do the numbers come from? Was my Dr (New Jersey) required to send this in? To whom?
Edecated is what I will start with here…. I was born in New Haven, Connecticut in 1968~ being sick with leg cramps and a lupus rash ( butterfly rash on my face) as far back as I can remember. At 16 I gave blood and not ever been sexual, A man hunted us down to say I had test positive or fals positive for syphilis, which became the joke of my every doctor visit of what toilet did I sit on..except when I got married! After panicking attacks, continued leg cramps, weird antibodies all signs and symptoms. In 1995 while I was pregnant my body became covered with what in the morning look like ant bites but but afternoon 100 painful pus filled boils. The doctors thought low rubella, but really they had no clue… Moving ahead to 1998, I had my daughter and 2 months later, I thought. I was post pardum depressed, then the flu, I had the leg cramps, a small fever I was sound sensitive, my head hurt, I went to the doctor and I told them I was tested for Lupus, I test positive for syphilis but it’s a false positive , I was in so much pain with my muscles. To make a long story short, 2 years went by and I ended up just deteriorating add a physical pain clinic with being diagnosed with fibromyalgia, this doctor said another patient has my symptoms too, she was going to send me to a Lyme specialist .. I was crazy by this point being so sick since 1970 at least. I told him the story of testing positive for syphilis, he told me they are the same spirochete and that he was going to test me for Lyme… needless to say the western blot and three other test he did came back positive and I Had a co- Infection. But what’s is the worst thing, my son has Lyme disease!! He also has severe Crohn’s disease.. I know the CDC when I was sick didn’t believe we could transfer to our kids, but if Now we can educate doctors better. I am still sick and in pain. But can’t get help here in Georgia due to all doctors feeling that Lyme isn’t serious. I have memory issues, pain in my legs, back and more I know it effects me still to this day. With the great people and value we bring ourselves with education. A survey of us moving around as I myself moved from Connecticut’s to Chicago, to Georgia to Texas where I wawas diagnosed but didn’t contract the tick born I’ll esess and then have moved back to Georgia. My son was reported In Texas and Georgia. Is the cdc just getting numbers or do they get actually people like if you had a concussion? Where I work we have a group we choose to concur a problem. This is a problem. Not just the disease but the factual reporting of the disease and the education in regards to the disease . I agree with the comment above, there needs to be more coverage on the news. I went to give blood. I am AB negative, however they know it is bad blood if you ever had Lyme you can’t donate.
Thank you everyone for all your hard work and support. I would love to help in anyway I can to be a voice.
I am with you leadpamie! Waiting since 2007 for SOMETHING to happen to help me and others with TBDs! Make insurance pay for BASIC treatment of TBDs! Sick of being sick and in pain! Annoyed at having to pay insurance premiums and have to pay out of pocket for TBDs treatment as well. Annoyed being told “it is in my head, also!