SAN FRANCISCO (CBS 5) — Health insurance has become a luxury many Americans are struggling to afford these days. So imagine the frustration when you do have insurance but you still can’t get your plan to pay for drugs that cost thousands of dollars a month.

It’s a ritual Mona Motwani goes through every day: intravenous infusions of antibiotics, to fight advanced stage Lyme disease. “I was basically lying under the desk at work because I couldn’t even stand up,” she said.

The bacteria affects the nervous system, and makes her so exhausted, she had to quit her job as a public interest lawyer. “I cried for days. I couldn’t accept that I wasn’t able to work,” Motwani said.

Lyme disease comes from the bite of a tick, found in wooded areas where there are many deer such as in Marin County. While most cases are treated with just a month of antibiotics, some patients suffer much longer.

The disease can be devastating, both physically and financially. “The insurance has been a nightmare,” she said. Even though Motwani has insurance, she can’t get covered for her drugs. She takes a lot of them: 70 pills a day. And they’re expensive. “Especially one very important one, which is $1,300 a month,” she said.

The IV drugs are even pricier: One bag can cost as much as $200.

“And that is one bag, twice a day,” Motwani said.

But she said each time she submits a claim, Blue Shield comes back with some reason why they can’t cover it. “I have to go back to what was denied, check the explanation of benefits, call back the insurance, get another letter from the doctor. It’s just too much red tape,” Motwani said.

Motwani is not alone. “There is an insurance problem,” said Dr. Christine Green, Mona’s specialist. Green said many advanced stage Lyme disease patients go through the same ordeal.

It has to do with the standard of care for Lyme set by the Infectious Disease Society of America and upheld by the Centers for Disease Control.

“If you look at the IDSA standard of care, that patient needs a month of antibiotics,” Green said.

For advanced stage Lyme disease, it’s just not enough. “The insurance companies as near as I can see have chosen the least expensive standard of care,” Green said.

It’s a very controversial issue and many doctors disagree, including UCSF’s Dr. Richard Jacobs, an infectious disease specialist.

“The recommendation is that even after you have an episode of (Lyme disease), if you have been treated appropriately for 6 weeks with intravenous antibiotics, that further therapy for these non-specific symptoms is not indicated any longer,” he said.

Jacobs said he is not surprised that this prolonged therapy is often, or generally not covered by insurance. “No, not at all. I don’t think that long-term therapy is indicated and it can lead to problems,” he said.

But Cindy Ehnes who heads up the state’s health insurance watchdog agency said Mona has the right to appeal.

“A patient who has been denied a treatment recommendation based on the fact that it’s not an effective medication has the right to receive an independent medical review,” Ehnes said.

So far, her agency has determined that Blue Shield should pay. “At some point it becomes the responsibility of the plan to provide that critical benefit,” Ehnes said.

It gives Motwani new hope that she can afford her treatment and get back to her calling. “I don’t give up. If I am exhausted I will still keep pushing, because I don’t like to see people walk over me,” she said.

Blue Shield declined CBS 5’s request for an on camera interview, but said they are still investigating Mona’s case.

However, last week for the first time Motwani said her insurer picked up the $1,200 tab for her IV infusion drugs.

For more information on this subject, please see:

Mona’s blog:

(© CBS Broadcasting Inc. All Rights Reserved. This material may not be published, broadcast, rewritten or redistributed.)

Comments (45)
  1. Amber Gentry says:

    Unfortunately Lyme Disease is more common than people know. My mom has struggled for years with the disease. The problem is not only insurance covering the medication needed to treat the disease, but, also in the diagnosis. She had False Negatives tests (she tested negative for the disease, when she really had the disease) many times. A close friend of the family has this disease too, worked at Kaiser, and fought with the doctor to get her diagnosis and treatment. The longer it goes untreated the more treatment the patient ends up needing to treat the disease; so, by the time you get a positive test, more drugs are needed. My mother has gone through MANY hospitalizations, had a central line IV (IV line going straight into the vein in her chest) a hip replacement resulting in from the arthritis that the Lyme causes and even a pain medicine pump implanted into her abdomen to help with the pain resulting from the Lyme disease. Many, Many times she has had to call and try to get the insurance company to pay for services and/or medication. After about 10 years of this, she is finally able to function, she will always have some problems, but, it is treatable, IF you find the right doctor. Unfortunately, Motwani is not alone, there are many with Lyme that have to fight for their treatment and diagnosis. While I was watching the segment tonight I started getting angry all over again. Having the tools to treat the disease and just deciding not to because it costs to much!

  2. Birgit O'Connor says:

    I am glad that CBS did this story to show the struggle with this insurance companies. I am still am disgusted that the insurance companies and infectious disease doctors think it only take 6 weeks to cure it. (it would be nice if doctors would pay attention in the beginning, listen to the patient and diagnose it earlier – then maybe that would be true).

  3. birgit O'Connor says:

    I had three false negative tests the doctors were not able to diagnose it, ….most of the current testing available is worthless, unless you go to the right lab. I first requested my blood go to that lab for the most accurate testing (right from the beginning) the unfortunate thing is the lab tech decided to send it in to a more convenient cheaper lab.

    2007 I came down with Bells Palsy in fact 60 % of people with Bells Palsy actually have Lyme Disease – I knew mine was different when I first got my Bells Palsy, the extreme fatigue, pain, etc. was not normal. and I felt as if I had bugs inside of me, I felt as if I was part of a germ warfare experiment……turns out I was pretty right on.

    2008 I came down with Graves disease, I thought this is crazy I’m a healthy person, I thought my fatigue was just my body trying to recover. But I also knew that all the things that were happening to me were masking a bigger problem…and as it turned out it was. Lyme hatches in cycles and a 6 week program won’t take care of the problem.

  4. Phyllis Mervine, CALDA says:

    Thank you for your timely article. Having just been denied reimbursement myself for treatment my doctor considered medically necessary, I sympathize with Mona and others trapped in this stressful position. Insurance companies rake in obscene profits while they pass on their expensive patients (who lose their jobs and health insurance) to the state, which must then support them with disability payments, taxpayer-funded assistance programs, and, in the case of children, homeschool tutors and classroom accommodations. CALDA runs an online support group for people afflicted by Lyme and their caregivers. You can apply to join by going to

  5. Robin Krop says:

    I believe Lyme disease can only be effectively stopped in the first several weeks with an adequate level of antibiotic treatment. After that, people may struggle for years to treat chronic Lyme. I’ve spoken with many Lyme patients who have needed months of IV treatment before they experienced symptom improvement. There can also be co-infections. People need to see Lyme-literate doctors, such as those recommended by CALDA.

    In my case, I was undiagnosed for 25 years by 300 medical professionals in the Bay area who had no idea Lyme disease existed or was here. I think something like half a million dollars was spent on my efforts to treat unrecognized symptoms. It would be more economical to recognize and treat Lyme and co-infections early on.

    We have seven reports so far of Lyme disease and co-infections being contracted in San Francisco. Locations are: Crissy Field, the Marina (the person was bitten inside the home when the dog brought a tick inside), Golden Gate Park (19th Ave and MLK, on the hillside behind the children’s playground: Lyme disease and three co-infections), suburban living (Noe and 15th; report of raccoons playing around the house area. Also a backyard in the West of Twin Peaks area, an animal corridor on the way to Mt Davidson), Diamond Heights Park.

    I hope this story will help Mona get her treatments covered! As well as help the public understand we have very serious, debilitating and expensive illnesses occurring that we all need to pay attention to and learn about in terms of protection/prevention for us and our pets (including adequate tick repellent), recognition of symptoms, and adequate diagnosis and treatment by Lyme-literate physicians who understand the complexities of Lyme disease and co-infections. The CALDA website,, offers a wealth of useful information, thanks to Phyllis Mervine, who started CALDA over 20 years ago.

  6. Mark Johnson says:

    Doctors who make false claims about treatment of late stage lyme are guilty of malpractice and responsible for the subsequent suffering and death in patients who are not able to get adequate treatment. Insurance companies who do not pay claims from legitimate clients are breaching their contract and should be investigated. It is not fair to make sick people individually fight insurance companies over the same issue.

    1. Karie Klim says:

      Like, like, like!

  7. Annette Sharp says:

    I discovered I had Lyme disease in the very early stages, like 6 weeks after infection. I still had to treat with antibiotics for over 4 months. It just can’t be cured in 4 to 6 weeks of antibiotics! You can read the details of my struggle here:
    The story is in 5 sections which can be linked from each section.

  8. lymegate says:

    As tragic as Ms. Motwani’s plight is—– hers can be matched or exceeded by far too many others. Some of them have children that are sick also. Then there are those who have NO insurance company to even ‘fight with’. Lyme and it’s co -infections have been named one of the fastest growing vector diseases.

    1. Debbie says:

      Yes. LYME IS CONTAGIOUS. Not easily, but people who live in close quarters with someone who has it will often get infected. And husbands and wives — it’s in semen, urine and breast milk. I wish people would help get the word out.

  9. Miles says:

    My partner beat Lyme without any insurance, but it took 6 years of constant effort and experimentation. She was bed ridden and suicidal during the worst phase. Luckily a long life of focus on health and self empowerment got her through the worst of it and she was able to effectively beat it by using an Integral approach. Her story of how she beat Lyme (along with others) is chronicled on the Lyme disease research database.

  10. MaryAnn Gray says:

    we all have the same story, just different names and faces. I was bitten in 92 got sicker and sicker for 12 yrs. then luck had it i was bitten again. it did turn out be be lucky the bullseye rash with the tick inside .. still took 6 mos to hear the word lyme . not from my pcp from a LLMD. my pcp never believe in chronic lyme, i am still fighting it to this day. Elk Grove, CA

  11. Miguel P-L says:

    It is always amazing to see medical doctors who blindly follow the IDSA Lyme disease guidelines. Most have only a shallow knowledge of Lyme disease and are not aware that the IDSA Lyme guidelines were the subject of an antitrust investigation by the Connecticut Attorney General. The investigation uncovered that the authors of the guidelines had substantial conflicts of interest that were not revealed in the disclosure section of the guidelines. These undisclosed conflicts included interests in private companies, payments by pharmaceutical companies and HMO’s and health insurers, payments for research, and financial interests in Lyme disease testing and vaccines.

    The IDSA guidelines, followed by HMO’s and insurers, have the financial interests of the authors and others in mind to the detriment of the Lyme disease victim.


  12. Joanne Drayson says:

    Thank you for this program which will raise awareness to the plight of thousands of patients suffering Lyme Disease in the USA.

    Comments from Jacobs should be looked at closely he and many other doctors who blindly follow IDSA discredited guidelines and deny long term treatment on antibiotics and often anything else play with words. There is not one single study placebo controlled or otherwise that can prove a short course of antibiotics have erradicated the infection. However there are many studies even ones done by those in denial that shows that after quite extensive courses of antibiotics Borrelia, Lyme disease DNA has been found in those patients. See and read Steven Phillips presentation to the IDSA review hearing.

    Borrelia is only one infection passed on by a tick bite interestingly Ben Luft and co recent research showed that many different strains can be passed on upto 6 and with multiple strains the illness is more difficult to treat. Also there are many co infections passed on by a tick bite many of which are also difficult to test for and difficult to treat and capable of causing chronic infection individually let alone in sequence with other infections.

    The presentations to the Institute of Medicine’s Workshop on The State of the Science in Lyme Disease and other Tick borne illnesses leaves those watching in no doubt that for some this can be a very complex and difficult to treat illness.

    The IDSA Lyme Disease Guidelines and the disgraceful way they are being upheld in the USA also reflects badly throughout the World and are directly responsible for the suffering of thousands more patients nay millions in total.

    In Europe there are several different species than in USA where there is only one ( many hundreds of different strains then worldwide) and yet still our doctors and our out of date text books follow the IDSA discredited guidelines.

    Jacobs comment about having a handle on this illness is a joke there are research papers published several a week must be totaling nearly 20000 now hardly something researchers would waste time and money doing if the infection was so simple and easy to cure. Why would the drug companies and IDSA guideline authors need to have patents and spend money on years of research trying to find a vaccine that works if it was such a simple easy to cure and rare illness, the public are not so stupid to be taken in by the IDSA and CDC spin on this illness.

    Those of us who do our own research find that when symptoms persist after that short course of antibiotics repeat courses of antibiotics do indeed continue to improve our health.

    In my case antibiotics noticeably improved my arthritis and muscle weakness I’d suffered for 4 years with, infact more than the steroids I was taking for a wrong diagnosis of Polymyalgia Rheumatica. Once on antibiotics I was able to reduce the steroids over time and continue to virtually 100% health. I was lucky my doctor suspected Lyme Disease and treated me according to ILADS guidelines. Since my diagnosis and recovery more patients are now being treated at my surgery for Chronic Lyme Disease and also in the early stages.

    I live in the UK and although our health service is so different than USA we too struggle to get the NHS to recognise and treat Chronic Lyme (because our HPA say IDSA guidelines are authoritive even though the IDSA review panel indictaed that they were not relevant to the different species found in Europe) I was fortunate in having a doctor who could think outside the box and treat according to my medical needs in my case simple oral antibiotics have restored my health and quality of life.

    I hope CBS5 is able to do a further program on the cover up on this World Wide medical scandal.

  13. marypart says:

    Thank you for highlighting the devastating effects of persistent infection with Lyme.

    Thank you for including the comments from the state health watchdog group.

    HOWEVER, this story had a glaring problem. The insufficient standard of care by IDSA was supported by the comments for a doctor who clearly follows that poor standard of care.

    You need to include comments from a doctor who follows the BETTER guidelines, provided by ILADS – International Lyme and Associated Diseases Society. One of the most famous ILADs doctors practices in San Francisco.

    If you are going to put reps from BCBS on TV, you need to include some balance from the other side! Talk to CALDA. They will put you in touch with the right doctors.

    My son has Lyme. He went from being a gifted athlete to unable to exercise. He wias misdiagnosed for over a year. Now, we too, have had to fight with the insurance companies for his care. We are in debt for the first time in our lives.

    Reduce the deer population now! Control mice! Lyme-infested ticks are everywhere.

  14. Katherine A Morrison says:

    Thank you for bringing this to light. I learned of the two points of view after finally being dx in 2003. I came down too sick to work, read, write, drive, sit upright, walk, etc in 2001. It took 18 months and I lost track of the number of docs I saw to get help. I had Blue Cross/Blue Shield at the time. I was told there was no lyme in CA. I had all the symptoms but one on the check off list. I did go to UCSF medical center and saw 3 docs there. I was tested for MS, and Myasthenia Gravis and other conditions. But, lyme was never considered. Bottom line is that I am seeing those who have the out of pocket funds to get better regain their health. Looking forward to the day when testing is better, education about lyme disease is more than just a paragraph in med school and/or doctor’s are willing to do their homework and for better treatment and more lyme specialist. Wishing the doc from UCLAand others would attend the ILADS Conference.

  15. Terri Kinneberg says:

    I I echo all of the above. My daughter DIED of complications of lyme disease and its co-infections. She was 28 y.o. passsed away on 9/23/10 and battled lyme for 5+ years. She lived at home (Midwest ) for the last 2 years, because she could no longer take care of herself. But she lived in CA. graduated from University of CA, Berkeley law school. She could not take the Bar, she was too sick ..

    To all of the iignorant infectiious doctors, take the potatoes out of your ears, don’t be a sheep to the IDSA. Educate yourselves, challenge yourselves, learn about lyme disease. iIt is an invisible epidemic. Did you become a dr. because you truly want to help patients, or did you do it for the money and “prestige”?

    I can guaratntee you that if one of these drs or members of IDSA had a family member comoe down with lyme. things would change. I watched my daughter in her slow decline to being bedridden and in pain.
    I would not wish this horrific disease on anyone. ( Maybe Dr Jacobs and others like him who are in denial. Or underwriters at the insurance companies,)

    Love to all the lymies.

    1. Miguel P-L says:


      Your daughter’s passing was a tragedy that didn’t need to happen. It is such a waste of a productive and obviously intelligent person, a graduate of UC – Hastings.

      I have a graduate business degree from UC – Berkeley. Lyme almost destroyed me, and still might. Numerous potentially fatal cardiac problems. In one year, I had 11 cardiac catheter procedures. When I self-diagnosed, 2 or 3 months of antibiotics resolved most of my cardiac irregularities. Such a waste of medical resources because of medical ignorance!

      I am far from well and sometimes feel like throwing in the towel. But being involved in Lyme activism keeps me motivated.

      You might want to have your daughter remembered through this site…

      God bless you,


  16. marshall says:

    Dormant bacteria are largely impervious to the antibiotics, and active ones are only susceptible during cell division which occurs in borrelia at 1/80th the rate of most other infections, approximately every 12-24 hours. Hence long courses of antibiotics are required to hit the bacteria when they are vulnerable. For some reason, the IDSA doesn’t acknowledge this situation, and it’d be interesting to hear their explanation, because short courses of antibiotics would be inadequate in late stage infection. Even dormant bacteria emit substances that are toxic and contribute to symptoms. The borrelia that burrow into the brain are even more difficult to get to with the antibiotics, but there’s simply no alternative–you must take antibiotics.

  17. Todd Meese says:

    Thank you KPIX for bringing some awareness to this disease. Like all Lymies, I’ve been put through the ringer with this disease. Their is no reason for us not to get the treatment we need. Unfortunately, it does come down to the almighty dollar. I went through the standard 3 week antibiotic course and had no reaction to the disease. I was unable to afford my COBRA payment and now have no insurance. I am currently now in a battle with my former workman comp carrier, as I contracted the disease at work. What a battle it has been. God bless all my fellow Lymies! Don’t give up! Keep fighting.

  18. Kristina Burns says:

    My daughter and I both have Lyme and co-infections. We have Anthem/Blue Cross HMO through Hill Physicians and John Muir medical groups here in the S.F. BayArea for which we pay $36,000 annually. There are NO doctors in our medical groups who actually treat Lyme, yet the insurance company refuses to give us medically necessary out-of-network referrals to a Lyme and Tick-Borne Disease specialist. They claim we have to get care from an in-network doctor or affiliate such as Stanford Hospital, which does not even accept Lyme referrals as they have no M. D.’s who treat it. We have been repeatedly denied these necessary referrals despite the fact that the state of California mandates referrals for specialty care. They are illegally denying us appropriate, medically necessary care that our policy entitles us to. Treatment of all other bacterial infections is covered, why should Lyme be any different? With two family members requiring treatment, the result is severe financial hardship. Why should we have to pay for care that is a covered benefit under our insurance policy? Lyme disease is the fastest growing vector-borne disease in the U.S. It is far more prevalent than AIDS, yet greedy, unethical insurance companies habitually deny sick patients coverage. Thank you, KPIX for shedding light on this injustice.

  19. Thora Graves says:

    It is CRIMINAL what is happening in the Lyme Disease World and there needs to be someone held accountable. I have had Lyme Disease since 1988. I had the bull’s eye rash and all the serious symptoms that followed including encephalitis. I went to a very prestigious university in the bay area and I was told I had viral encephalitis, that lyme disease was not here. I went back to another doctor and was told lyme disease was a fashionable disease that I did not have it and was given a RX for Premarin. I cryied all the way home. I knew I had lyme but did not know where to go. I did have lesions on my brain that with aggressive long term treatment have been helped. Long term treatment has also saved my eyesight. Iam ready to fight anyone who says long term treatment does not help. Something needs to change fast.

    1. lymegate says:

      Lyme disease and the other tick borne illnesses that can be transmitted by even the same tick has ruined many lives.

      About the only thing the IDSA got right in their infamous denialist Guidelines was the fact that if caught early it’s easily curable or put into long term remission for most people who were lucky enough to find a doctor who would treat them RIGHT AWAY. And that’s about the ONLY thing they got right.

      Of course most of us had to cycle through dozens of doctors before finding one that WOULD treat us with antibiotics. By that time the disease was often firmly entrenched in the central nervous system/brain and almost impervious to antibiotics except by persistent treatment, sometimes many many months. or even more.

      Shame on the IDSA and shame on all doctors who don’t try to learn about Lyme disease. And, while I’m at it, particular shame on doctors in Oregon who collectively will NOT treat for Lyme unless you show up with a bulls-eye rash, which doesn’t occur in almost 50% of the time. Then it’s 30 days of low dose antibiotics and wham, bam—- your cured! Maybe, if you’re lucky. So, shame on Oregon doctors.

  20. Bob In NY says:

    Here’s a quick glimpse…keep in mind the majority of those infected will have negative blood work results..

    1. Marjorie Ann says:

      I am really happy to that CBS did a story about this issue. Lyme disease is an epidemic and not just found in the woods. Ticks with Lyme disease have been found in urban backyards in San Francisco.

      CBS needs a new medical correspondent. I emailed your current correspondent when she claimed in one story that ticks needed to be attached for a certain amount of hours to spread disease. That is just another old wives tale spread by the CDC. The IDSA and CDC have written purposely misleading guidelines on testing treatment and anything to do with the disease due to financial ties to not wanting patients to get correctly diagnosed and treated. The Attorney General of Connecticut has tried to expose the IDSA and tried to get them to correct their corrupt guidelines. Due to their misleading guidelines and the unreliable tests they recommend for Lyme disease it took me literally years to get correctly diagnosed. By the time I was correctly diagnosed I had no insurance left because I could no longer work and my Cobra had run out so I have been forced to pay thousands of dollars out of pocket for treatment.

  21. Lisa Soccoli says:

    THIS disease needs far more attention then it gets. Thank you for the story……
    but now we need the insurance companies to pay for the medical attention we need, more doctors to understand the late stage lyme .THIS is a night mare i have LYME and i am not getting well its sad. ITS costing me alot, and i have insurance.

    I strongly believe LYME is a bioweopen that leaked out of PLUM island as jesse ventura did on his recent show.

  22. Birgit O'Connor says:

    I have insurance and last year alone I spent over $ 79,000 in treatment (this is only one year)…. the insurance company only paid for 7 days of medication for my Co-infection and for a small amount of the oral and IV antibiotics that I needed for my Lyme disease. I am now feeling much better but was unable to function for 3 1/2 years.

    It is really hard to stay positive and continue fighting when your going broke ..and there are many others that can’t even afford any treatment – what are they to do?

    It is also heart breaking when you are trying to explain to your loved ones why your having treatment when they are looking at standard medical guidelines … they think that you are being taken advantage of but they don’t know the disease. If you have it you become and expert and treatments know about the treatments that will best work for you. But it is extremely important that you see a LYME – literate doctor one that knows about co-infections and treats well beyond standard guidelines ILADS literate.

  23. Sue says:

    It is horrible, a crime even, that when your life is stolen from you by lyme disease and you need help and support more than ever before, the little awake time that you have each day or even week, has to be spent fighting with an insurance company. I’ve been through it all and while still dealing with symptoms – 4 years later – I am better than I was when this nightmare started, thanks to my team of lyme-literate physicians, home-care nurses, my husband, family and facebook friends/support group!

  24. kathy S says:

    As a fellow Lyme patient, all I can say is don’t give up. Your a lawyer, so obviously you have the spirit to fight. never give up and my prayers are with you, and all the other chronically ill people in our country that the overly rich greedy insurance corporations don’t want to loss profits on caring for.

    I kept fighting and I am now alive and actually I am recovering, it has been about 10 years f antibiotics and possibly now I can finally get off of them. It also helps if you have a nurse teach you how to infuse your own IV’s if you don’t already. That saved my insurance company thousands of dollars a month and is probably one reason I had less problems getting them to pay.

  25. Roger says:

    For anyone who is interested you can see both Lyme cysts and biofilms for yourself right here:

    Some might argue regarding the above ” oh, but this is vitro and not vivo” – but the organism clearly demonstrates that it unanimously has the genes and the DNA capable of cysts and biofilms (not to mention the work of the late NobelPrize nominee – Virologist Dr. Lida Mattman regarding cell-wall deficient organisms, and who subsequently had her lab shut down by the Gov’t for “too many positive tests” – google Bowen test). — So why such consistent “denial, until proven otherwise” dogma when more research is so clearly needed ? One reason, and one reason only that I can really imagine holds any real water = protection of financial interests within what is a “machine”.

    For me personally – there is just no question of persistence – because after 10 months of IV anti-biotic treatment (my situation was severe, neurologically involved, and life threatening), and a subsequent spell of 4 months of negative tests (but without significant relief of symptoms), I have now once again tested positive (and not via some “interpretive” anti-body test, but via a direct visual detection of the organism). Would someone please explain how this happens if there is no such thing as chronic Lyme ? — and no, there was zero possibility that this was a “re-infection”….ZERO.

    I did not lose an $80k a year job, pile up over $40k of medical debt, and spend over a week in the hospital this year (among various other emergency room visits) because I wanted to.

    With people like me out there – it is no wonder that there is a “machine” which doesn’t want the existing paradigm of denial, and lack of funding for new research to change – there is a lot to be concerned about, a lot to be lost depending on who YOU are within the “machine”.

    If someone wants to do a great job of reporting:

    1. Perhaps they could really do an expose and take a much closer look at the on-going multiple-year shelving of the already drafted US Senate bill for significant Lyme research funding – which has been held up by one person, a powerful committee chair NJ Senator – Frank Pallone (D). There really should be close look at his affiliation with and donations received from Health Insurance Companies. I have seen reporting elsewhere which states that he has received more political donations that any other elected officials in the USA. — Could it possibly be that “no sufficient study exists to prove chronic lyme” because certain interests (like Insurance Companies and the IDSA) are quite pleased with the existing status quo and the current state of science which foments the paradigm of denial ? — This bill shelving issue is way way too juicy and ripe to just sit there ignored, and it is begging to be blown wide open an investigativ reporter who has the tenacity and resources..

    Doesn’t anyone recall how the NIH once fervently insisted that women do not get aids, that it was only a gay mans disease ? -Ludicrous, while women with aids died right before their eyes without treatment – I feel that this is essentially the same mechanics and “machine” at work now which is continuing to deny that Lyme exists beyond 2 to 4 weeks of anti-biotic treatment.

    2. I also wish someone could show me ALL of the transcripts of (and leading up to) the anti trust “settlement” which the IDSA agreed to – The settlement language specifically stated that the IDSA will be – from this point forward forever be held harmless. Who’s victory was this really ? Yes…really ? We are still rather short on details here — don’t you think ?

    Scientifically the argument (and the truth) I feel, is far from being won when an organization such as ILADS (the organized proponents of chronic Lyme) allows it’s umbrella to extend as widely as it does (more members does not = better science). Unfortunately – this issue really starts however, right at the pointy top of the umbrella – when a little digging, and some first hand knowledge reveals that Ithe President of this organization appears to be a career building pill-pushing (with self admitted “all experimental” treatment) Psychiatrist who has repeatedly received a plethora of monetary incentives from Pharmaceutical companies (and I do not sling rumors – I know all of this first hand).

    From what I can see – ILADS appears unable to fund science equally powered to meet the “rules of the game” set by the acedemiacs known as the IDSA. — and how ILADS is ever going to provide their own revised Treatment-Guidelines to match a standard on the level of critique comprable to the standards established by it’s own arguments against the IDSA beguiles me.

    Lastly -I’ll add something positive (which is also partly in response to one of the above posts which declares “there is simply no alternative to anti-biotics”) :

    I am myself – in light of my own crash course with all of this chaos, pursuing something called the Buhner protocol, which is essentially akin to a “3rd party candidate” in this mess – iand it has had some very tangible benefits.

  26. Karen Fernandez says:

    As a Lyme patient I want to say Thank You for airing this segment. Mona thank you for going public with this and for Dr. G for also backing you up!!

    It is a sad, sad travesty that we the Lyme community have to suffer in this day and age the way we do!

    The IDSA is holding ALL Lyme patients prisoners with their guidelines! A big THANK YOU to the MD”s out there that take the time to properly treat us!!! You are our angels!

    To the other doctors that refuse to believe there is Lyme in California…SHAME ON YOU!! Our medical professionals have gotten lazy…they let the insurance companies dictate the diseases to treat along with the IDSA…doctors have stopped going to the chalk board and taking the time and effort to look at the entire patient and their symptoms presented. It is easier to catagorize a patient into a well accepted disease such as Parkinsons, Chronic Fatigue, Lupus, Fibromyalgia and even ALS or MSA instead of really listening to the symptoms patients present with.

    I often wonder if one of these doctors or an IDSA members that denies chronic Lyme exists how would they feel if a loved one of theirs contracted this awful disease…would they then realize the injust they are doing to all of us???

    Thank God for organizations such as CALDA who reach out not only to educate the public but also support those of us ill with this horrible disease.

  27. Mary Wilson says:

    Lyme disease unlawful-Discrimination/victimization(injury), Harassment and Retaliation is CRIMINAL! Our innocent young children without voices, families and future generations are/will suffer in silence, denied civil liberties for money, greed, power and ignorance! This is a national health, power and greed crisis – This is Big Pharma and stockholders bio-warfare against our own people, government and taxpayers’ causing disability and even (direct and/or indirect) death and tragedy, wasting billions and billions of dollars, and more, every year!

  28. mary says:

    Lyme disease unlawful-Discrimination/victimization(injury), Harassment and Retaliation is CRIMINAL! Our innocent young children without voices, families and future generations are/will suffer in silence, denied civil rights and liberties for money, greed, power, ignorance and denial! This is Big Pharma (and stockholders pocket books’) – Bio-Warfare against our own people, government and taxpayers’ causing disability, tragedy and even (direct and/or indirect) death – further wasting billions and billions of dollars every year!

  29. Borrellia B says:

    It’s so difficult not to get angry every time I hear another IDSA doctor speak about treating Lyme for six weeks. Please know that one of the IDSA’s founding members, Sam Donta, MD — as well as other IDSA physicians — do not agree with the above opinion expressed by the IDSA physician in the video. The physician in this story is following flawed guidelines either because he is too lazy to do his own research — it may help him to look at studies performed by Janis Weis, a researcher at the University of Utah — as well as the worldwide body of evidence which does not agree with the interpretation that the IDSA has given to the evidence. The bacteria was named after Willy Burgdorfer, the researcher who discovered the bacteria and who also disagrees with the opinions of the IDSA. Borrelia Burgdorferi is a spirochete, a distant cousin of syphilis which is medically known to hide in the body for up to 20 years. Tuberculosis can do the same. Before prescribing certain medications to individuals, it is recommended or required that a physician first test the patient for tuberculosis even if the patient has no symptoms! This is because certain medications can bring to the surface cases of what is called “latent” or “hidden” tuberculosis. The same is happening in Lyme but being denied by the IDSA. The scientific evidence DOES NOT support the IDSA. Note that the American Academy of Neurology and the IDSA guidelines panel had many of the same authors when considering their opinions and/or guidelines in regards to Lyme disease. A simple U.S. as well as European patent check of the names involved in making the 2006 guidelines will give you some of the reasons these corrupt IDSA physicians continue to deny the seriousness of Lyme disease. Research into many of these physicians will show they were paid by insurance companies to write guidelines, testify against patients; they received money from pharmaceutical companies and so on. One in particular, Raymond Dattwyler still holds or is affiliated with several patents. It’s disgusting what these physicians are doing, and I suspect that what goes around will come around and someday their own families will be paying for what they have done. It will make me sick if they are able to stand proudly and continue to deny what is happening when their own family members begin to suffer from this disease — and they will. Trust me, they will.

  30. Cathi Ruiz says:

    I am so sorry we all have to be going through this. its unfair and robs you of life. God gives you one shot at life, and I feel I have been robbed. I have it for 20+ years, 6 years of iv finally failed me, doing herbs now. Neuro, brain involvement and the instability is unfair. It takes away what you love most. God bless all that have this and maybe one day we’ll get our turn.