lymes

Is lymes curable?

[JackieCalifornia]

It's either curable, or suppressed so far that it feels like a cure.  Lyme bacteria can hide in the body in a way that makes it difficult for medication to reach the bacteria, so a complete cure is questionable ... but it's certainly possible to get better to a significant level.

[fletch836]

Yes, the vast majority of cases are cured with a course of antibiotics. But if it's diagnosed late, or goes untreated, you run the risk of health complications, including heart problems, joint pain, nervous system disorders, etc. In rare cases, people have long-term health issues (chronic lyme disease). This hasn't been fully explained yet, but is being studied by a lot of interested people, and there is a lot of debate among clinicians and medical research scientists as to its cause. There is a lot of inaccurate information on the internet about chronic lyme disease. Basically we don't really know what's going on there yet. We do know that prolonged use of antibiotics doesn't help chronic lyme disease patients.

[JackieCalifornia]

I have to disagree somewhat with 'Fletch' above.  

He says:  "Yes, the vast majority of cases are cured with a course of antibiotics."  It is true that antibiotics are the treatment of choice for Lyme disease, but there are no statistics supporting the statement that the 'vast majority' of Lyme cases are 'cured' with a course of antibiotics.  

He says:  "But if it's diagnosed late, or goes untreated, you run the risk of health complications, including heart problems, joint pain, nervous system disorders, etc."  Agreed.

He says:  "In rare cases, people have long-term health issues (chronic lyme disease)."  In fact, it is NOT rare that Lyme patients have long-term health issues, particularly if they are not worked up carefully to test for Lyme and other diseases carried by the same ticks, and then treated promptly and appropriately.  Under the ILADS (International Lyme and Associated Disease Society) guidelines, appropriate antibiotic treatment can extend for months and even years due to the characteristics of Lyme bacteria (1) to reproduce slowly (compared to other bacteria) and thus to miss being eradicated by a short course of antibiotics (for example, two weeks' worth), and (2) to hide in hard-shelled cysts in places in the body not easily reached by antibiotics.

Fletch says:  "This hasn't been fully explained yet...."  That's true, but the IDSA (Infectious Disease Society of America), a group of MDs who profoundly disagree with the views of ILADS (above), show little inclination to find an explanation and have rejected the reasearch and writings of ILADS-oriented MDs in seeking to understand and explain and treat Lyme.  A year or so ago, Connecticut Attorney General Richard Blumenthal held hearings to investigate whether the IDSA was wrongly attempting to stifle MDs who disagree witih the IDSA position on treatment.  Just today, in the 'Connecticut Post' newspaper online version (as well as in other media) was the following story:

===
"Leaders of a local Lyme disease advocacy group [ILADS] are disappointed, but not surprised, that a special panel formed as part of investigation by Connecticut's attorney general has decided treatment guidelines for the disease do not need to be changed.

"The eight-member review panel issued its report Thursday, unanimously agreeing to uphold the treatment guidelines developed in 2006 by the Arlington, Va.-based Infectious Diseases Society of America [IDSA]. The guidelines, among other things, don't recommend treating Lyme disease with antibiotics for more than a few weeks and say there is no evidence that chronic Lyme disease exists. ...

"The panel was the result of an antitrust investigation by Connecticut Attorney General Richard Blumenthal that found the Infectious Diseases Society of America panel responsible for the 2006 guidelines had conflicts of interest and didn't consider other opinions and evidence. ...

"The [resulting review] process [put in place by Blumenthal] included a July hearing in Washington, D.C., with testimony from medical professionals and scientists from across the country, including some who presented evidence supporting existence of chronic, symptomatic Lyme infection.

"But advocates [who agree with ILADS] say they had issues with the makeup of the special panel from the onset, since it didn't include professionals who treat people with Lyme disease. [An ILADS adherent] said that an ombudsman who screened all applicants to the panel for conflicts of interest, such as a financial interest related to Lyme disease, was paid by the IDSA.  [Comment by Jackie:  That, folks, is called a conflict of interest and should have disqualified the ombudsman.]

"Other advocates say they also have concerns about the process. ... 'Basically, [IDSA] figured out how to game the system," said Dr. Robert Bransfield, a New Jersey psychiatrist and president of [ILADS] ... '[The report] was whitewashed. And patients will suffer.'

"Richard Whitley, president of [IDSA], told reporters on a conference call Thursday that the committee substantiated that there were no conflicts of interest.  'I think the attorney general was misguided by the activists presenting their own opinions,' he said. [Jackie says:  that's the pot calling the kettle black, now isn't it?]

"We will carefully and comprehensively assess the final report and the review process leading to that report to determine whether the IDSA fulfilled the requirements of our settlement," Blumenthal said.
===

[post continues in next post -- too long to post in one]

[JackieCalifornia]

[Part two:]

'Fletch' goes on to say above in his post:  "This hasn't been fully explained yet, but is being studied by a lot of interested people ...."  That's a bland way of saying that IDSA and its members will continue to drag their feet and diagnosis patients with Lyme symptoms as as having emotional issues, or multiple sclerosis, or depression, or something that can't be identified, but it surely can't be Lyme because the patient doesn't fit within the restrictive IDSA diagnostic guidelines and is offered two weeks of antibiotics for an infection by bacteria that hide in the body and reproduce much more slowly than other bacteria for which a short course of antiobiotics IS effective.  Interestingly, there are diseases treated with much longer courses of antibiotics (tuberculosis and Hansen's disease [leprosy], for example) which is standard therapy for those diseases, and IDSA doesn't blink.  But for Lyme, no way.  Why is that?  The IDSA has no proof that Lyme is eradicated by two weeks of antibiotics.

Fletch then says:  "[T]here is a lot of debate among clinicians and medical research scientists as to its cause."  Actually, the cause of Lyme is known:  the bacterium Borrelia burgdoferi, aka Bb.  

Back to Fletch again:  "Basically we don't really know what's going on there yet."  There is none so blind as he who will not see.

And Fletch's finale:  "We do know that prolonged use of antibiotics doesn't help chronic lyme disease patients."  No, Fletch, we do not know that, and in fact we know quite the opposite.

Fletch's casual reference to 'chronic Lyme disease' follows the IDSA approach that Lyme is easily cured with a couple of weeks of antibiotics, and if you still have symptoms after that, you don't have Lyme any more (why? because the IDSA says so!), and you must have some mysterious syndrome the IDSA calls 'chronic Lyme disease', which is not to be treated and is simply to be endured.

Why does the IDSA take that position?  Because some of IDSA's senior members have long been involved in the politics of Lyme and have built their reputations on Lyme being rare and easy to cure.  Rather than use the scientific approach of observation and deduction to a conclusion supportable in logic, these 'scientists' stick with their original thesis and definition of Lyme, and dismiss patients who still suffer as having the mysterious 'chronic Lyme disease' for which there is no treatment and no cure, so go away now and don't bother me.

The intransigence of the IDSA and its adherents brings nothing but shame to them.  Where is humility in the face of nature, and a willingness to learn and to apply the scientific method instead of defining the answer and then cherry-picking evidence to fit the contrived answer?

Some of you readers here will remember the early 1980s when AIDS was first becoming known in the US and its sufferers nearly all died in the days before retroviral therapy.  There was near panic because no one knew how it was transmitted -- was it like the common cold and you could get AIDS from someone by passing them on the sidewalk?  I remember clearly watching on national TV a white-coated MD from the CDC, who sonorously intoned that if you weren't Haitian or gay, you had nothing to worry about.  Even I knew microbes don't give a d*mn what passport you carry or what your sexual orientation is ... but here were the most esteemed physicians stating as a fact what was obviously a huge and illogical untruth.

MDs are only human, and their reputations and livelihoods are at risk if the MDs are on the wrong side of politics within a group like the IDSA.  But that doesn't make this kind of unscientific orthodoxy true or acceptable.

Fletch, perhaps you will learn something from the suffering and the stories of the many many people who post here who have been rejected by their IDSA-adherent MDs as head cases or malingerers or MS patients or many other possibilties, without even considering Lyme and its coinfections as a continuing and devastating illness, ruining lives and families and taking livelihood and happiness.  

Shame on IDSA for putting personal privilege and pride above care for the patients.  Do you all not still swear the Hippocratic oath upon becoming physicians:  "First, do no harm."  Willful blindness leads to harm for the patients and to shame for you.

[wonko]

JackieCalifornia has already provided a detailed reply.  I'll add my two cents.

I agree that there is not adequate proof to support the existence of chronic Lyme disease or the efficacy of long-term antibiotic treatment.  I disagree that the conclusion to be drawn is that chronic Lyme doesn't exist and that long-term treatment is of no use.  Instead, I think the state of testing and research on Lyme disease are presently lacking, and that it will take time for the case of chronic Lyme to be proven to the highest standard of evidence-based science.

In other words, just because you can't see something, doesn't mean that it isn't there.  Ever read Dr. Seuss' "Horton Hears a Who?"

I can't wait until the picture of what is really going on with Lyme disease testing, diagnosis, and treatment slowly comes into focus, because I am sick *now.*  Therefore, like many other patients, I have trusted my care to the clinical experience of my Lyme doctor, and have gained support from peer-to-peer testimonials.  

Long-term treatment saved my career and quality of life, several details of my experience shared in posts here on MedHelp.  So it's obvious what my views are on the subject.  I'd encourage anyone to learn the broadly ranging points of view on the subject, and to make their own decisions.

[fred1986]

What you wrote about cysts worries me a little. I have an appointment with a doctor @ Johns Hopkins on the 30Th because there is a lump a small one that is hard in the middle of my chest the size of the tip of your pinkie finger.  It was a black head for years and of course I would squeeze it out. But, now it is very hard and it's not bothering me but irritating me so I will assume that they will cut it out then find out from there.  Also I'm waiting for a appointment with a disease specialist regarding my Lyme's.  Apparently I have had it for some time now it is in my joints mostly the elbows. I have had a spinal tap done around October I believe have to look up in my records can't always remember dates and such as well as before. I thank you for your information and I hope to hear again from you. I want to that all of you for responding.

[fred1986]

I hope you got my message yesterday. If not let me know thank you again Fred (michele) Maryland

[im_ticked_off]

Fred your WRONG abx do help i have putting up with this disease for a long time and im still not over it.  when ever i do go off abx i go down hill right away i was one of the people that went undiagnosed for a long time.  jackie thanks for writing what what you wrote, this infection *****, and if it was not for llmd that would treat people who have lyme with abx I don't know where I would be right now.  

[JackieCalifornia]

Ooops, I think ImTickedOff may have been responding to Fletch, not Fred --

And Fred/Michelle, I didn't get a message from you, I don't think...?  Try again?

[im_ticked_off]

i meant fletch not fred sorry

[Lou405]

Fred, I am using MMS in low continuous does. I am not having a Herxhimer reaction. In the past I would would have big  herx's just  from sitting in the sun, drinking  Kumbacha, etc. This does not because I take in low continuous does and take plenty of vitmin c and my main magnesium and potassium, etc.
I have had it for about twelve years with many, many symptoms. Last week I was at the grocery store buying bulk nuts and it surprised me when I looked at the 4 numbers and copied it to the tag in just one look. (For years this was a task that meanth having to  look back and forth about twenty times.) I hope this means my short term memory has been reclaimed!
MMS does not leave long lasting residue in the body. See some info here if you are interested. It is too simple and too inexpensive, yet it is dissipating Malaria within five hours. Of course Lyme is nastier and goes deep, deep into tissues, yet some claim it has eradicated all of their Lyme infection. http://mmsadvancedstudies.com/

[lymemomd4]

Hello, I am new to the lyme wars!!  I am being my daughters advocate who is ll years and was diagnosed with lyme this March.  The previous year her knee swelled and was tested for ruematory arthritus, the test was negative.  This year her knee swelled again to the size of a soft ball and very warm to the touch.  As well as many other symtems.  They took her blood and tested for lyme.  I believe it was the elisa test.  I had no idea they were going to do this.  Mind you we have also experienced numerous behavioral issues in school and continious struggles in acedemis.  Somewhat look like sensory disorder, anxiety related with autism.
The test result came back I expected to hear the arthritus (again i was not aware they were testing for lyme).  The ped. told me she has lyme in he blood and we will do another test.  So they did the second test which was the western blot.  They told me she has seccond grade lyme and we will need to start treatment.  They reassured me it can be curred.  First they wanted to give her intervinous antibotics, a spinal tap and tap her knee for the fluid.  Then a week later, the doctor saying with consult fron UCD pediatrics specialit.  We only need to start 21 days of amoxicillan for 3 times a day.  Half way through the antb.her knee swelled.  Then a week after the antibotic (antibiotic) her knee swelled.  This time he pedt. said well the swelling wasn't that bad.  He wanted to wath her for 2 months to see if we need to continue antibotics.  Well a couple weeks later she swelled again and know had these swelling blotches on her face.  Which he told me was pitysus alba and was very common not related to lyme. (that didn'y make since to me she has never had a skin promblem why now.)  She is on ibreprophon almost everyday for pain and is know complaing of her chest hurting.  Her preditrication said we could start intervenious antibotics but didn;t have a plan in my opionin.  I didn't want him to start her on another course and then watch her for 2 months again.  He refered us to an pediatrics infectious diesease specialits and a ruemotlogist at UCD.  I am so scarred I have read the controvesey regarding ILADS and IDSA (acourse her peditritian leans on the side of idsa).  I contacted a lyme specialist in the area but it's $650.00 to see them and that doesn't even cover lab work or the treatment.  My husband makes $17.00 an hour and supports a family of 6.  I take care of all the appointments, kids and house.  Your blogs have been helpfull to read.  Thank you for listening to my story.  I guess I would like to know why those ILADS doctors (which I am leaning more on their philosofy of treatment) are so much money.  Also, if you have any suggestion with my next step with the UCD (ucDavis) doctors.  Thank god for my faith in christ and my daughters as well that is whats keeping us strong.  I also believe god gives us knowledge and discernment.  I am still seeking more knowledge so we can help my daughter who is suffering in the lyme wars.
Thank you
(please forgive mispellings)
Concerned mom!

Ps. I am hoping to chat with other moms who have been through this with their kids.

[JackieCalifornia]

Welcome -- so sorry to hear what your daughter (and you and your family) are going through, but you are asking all the questions and thinking all the thoughts I would be.  I'm not medically trained, but am happy to share with you my suggestions for next steps, and others here can too.

It sounds like the docs so far are going in the right direction; the difficulty is what their next steps are going to be, particularly:

1-- did they test for anything other than Lyme?  The ticks that carry Lyme often (maybe half the time) also carry other diseases that may or may not respond to the same antibiotics.  Lyme specialists test for these possible co-infections based on careful consideration of symptoms, so they know which other infections are possible/likely.

2--the length of time the docs propose to treat your daughter is the standard for non-Lyme specialists, including those who belong to (or follow the treatment guidelines of) the Infectious Disease Society of America [IDSA].  More progressive MDs tend to follow the IDSA treatment guidelines, as you have already discovered.

My next move would be to see an LLMD.  If you google "sacramento LLMD", you will see a number of hits on various websites like this one, and by reading through those, you can develop a list of possible docs to consult.  Then start calling, tell them briefly your family financial situation and that your daughter has a documented diagnosis of Lyme but the suggested treatment is only a few weeks antibiotics, and ask if they could see your daughter for a reduced fee on a compassionate basis, if they don't take your insurance (if you have any).

Be sure you have copies of all your daughter's test results, which the current docs are I believe required by law to give you, so the new doc will have something to go by, and also saving time and money that way.  You don't have to tell the current docs you are getting another opinion, and in fact, I would not at this point do so -- nonLLMDs tend to get huffy over stuff like that, and you may need these guys again at some point.

You don't owe them an explanation of why you want the tests, so just smile and ask.

Best wishes -- let us know how you do.  And btw, you are doing exactly what I would do.

[ewford]

Jackie posted a very compassionate and thoughtful response.  But I believe she neglected to respond to WHY LLMD"s charge what they do.  

  First off, Lyme is probably THE most complicated disease symptom wise apart from syphillis (syphilis).  The symptoms range all over body and can vary from one person to another.  You could have not only Lyme (Borrelia Burgdeferi) but also one or more coinfections that have unique and overlapping symptoms.  Example: Bartonella   causes cysts, eye pain, sensativity to sunlight, ankles hurting, skin sensations.  And yet, Ehrlichia also shares symptoms such as cysts.  The doctor has to wade through ALL your past history and symptoms no matter how trivial.  These symptoms are all keys to unlock a proper diagnosis.  That is the way an "old time Doc" would do his job.  


Now, insurance companies regulate how long you can spend with a patient, treatment guidelines and termination of treatment as per the IDSA and CDC.

  ILADS doctors get no compensation from Insurance contracts and guaranteed patients.  And yet they still have the same bills to pay and with HIPPA laws have to hire even MORE employees to handle paperwork.  They often will spend 3 hours with a patient on first visit which is unheard of but necessary.

[JackieCalifornia]

ewford says 'ILADS doctors get no compensation from insurance contracts...'  

To clarify:  there is nothing preventing Lyme specialists from offering their services and participating in insurance plans, but some (and maybe even many) Lyme specialists who take a progressive view of Lyme and its coinfections are not signed up with medical insurance companies because it may create problems between what the docs recommend and what the insurance companies are willing to pay for.

Insurance companies are in the business of reimbursing patients for reasonable medical care, and unfortunately at the current time, many insurance companies (to my understanding) follow the older diagnosis and treatment guidelines that more progressive LLMDs do not agree with.  This creates a conflict between the health care provider (the doc) and the insurance company.  Ethically, MDs are obligated to do what they think is right, but to avoid arguing with insurance companies about what is appropriate care for Lyme patients, LLMDs may just decide not to take insurance, to avoid the problems.

I'd still ask the LLMD you propose to see if there is a lower rate they would extend to you.

[JackieCalifornia]

Ooops just realized I made a typo in my first response to you up above.  The paragraph numbered '2' is corrected here with the change inside ***asterisks***:

"2--the length of time the docs propose to treat your daughter is the standard for non-Lyme specialists, including those who belong to (or follow the treatment guidelines of) the Infectious Disease Society of America [IDSA].  More progressive MDs tend to follow the ***ILADS*** treatment guidelines, as you have already discovered."

Sorry!

[ewford]

Sorry, didn't clarify in my post.  What I meant to say is doctors that accept insurance are either bound to IDSA or CDC treatment guidelines and could be brought before a sanctioning board if the insurance co decides it wants to make a complaint against "overtreatment".  So alot of LLMD's will not have contracts with insurance companies because they will be bound by skewed guidelines.  Make sense?

[lymemomd4]

Yes make sense!  I am hoping with being transfered to UC Davis that they fall under different insurance guidlines.  Otherwise my only other hope to see a LLMD is Lyme aide 4 kids.  Thank you for your responce that was a helpful insight on why the LLMD charge so much.  I know they are amazing doctors.  In one of the LLMDS books he says unfornitly it seems like lyme is for the rich!

[lymemomd4]

Thank you Jackie for responding and reassuring me that I'm taking the right steps.  I have went rounds with her peditritcian and have one hope in the UCDavis doctors.
I have already been in contact with 2 LLMDs in the area.  One is $650. to see and can't see her until Aug.  The other can see her as really as next week but is $675.00 dollars.  They at least told me of a program called lyme aide for kids.  You have to apply for a scholarship.  We do have insurance through healthy families.  I am also thinking of putting together a fundraiser for her. I used to sell jewlery.  I can't think of a better fundraiser with a great cause.  With prayers and resouces like this site it helps me get to the next step.  It's that hardest when she is at school calling me daily cause shes in pain or a kid is telling her she's faking it, wheres her crutches.  The other big thing is my husbands believes in alternitaive medicne and that is the treatment he wants to give her.  It is based on a book by Dr. Hulga Clark.  I believe its alot like the Rife machine he calls it a zapper.  It also is with herbs killing parasites.  One of the encouraging thing with one of the LLMD in the area he mentioned treating with antib. and herbs.  My husband was happy to hear that.  He believes with the book he's reffering too, says how borelia the parasite(bacteria) can be killed  with this treatment.  Which then would cure the lyme.  Now I know she still might have the arthritus that is caused by lyme.  It is so hard to decide.  I don't want him to start giving her herbs and zapping her but then it sounds alot better then the road her current doctors are taken us down.
Thank you aagain, glad to be part of this group!
lymemomd4