Lyme Disease Treatment Recommendations

[doctorguest]

Hi everyone,

I just received this by E-mail. It was embargoed for press release until 4 pm today, so this is extremely hot off the press. The guidlines are from the American Academy of Neurology. Hope this link works.

http://www.aan.com/press/index.cfm?fuseact...amp;release=514

[AJVDK]

Wow! Thanks for giving us the info. It made me stop and think about my treatment, I would like to know more about the effect when lyme is involed in your heart as I had alot of problems that are heart, and nero. So I am going to talk to my LLMD. My nero question the treatment, but my EP is for it, also and agrees with my LLMD so I am like in a rock in a hard place, but it sure makes you think the line about quality of life, that very upsetting...... as I don't want to stay this way. I had lyme 8-10 years it what they beleive. I been treated now on abx for 3 months, and only made a small improvment.

Now you find yourself asking I had a postive lyme test, and I have POTS/NCS but do I have somthimg else..... or is this my life now. I don't want to settle on the fact I will not work again at 28. I can't. At this point my doctor will not let me work. I find it hard to get out of bed most days. I even have to use oxygen at nights, and when I drop to low. Theres got to be some improvement!

Sorry for going on. But lyme is so misunderstood, and everyone beleive different things. Again thanks for posting the artical!

[Sophia3]

AJV

I have been so sorry to read about your desperate situations..it sounds like you have been through A LOT lately with quality of life stuff and can not imagine being in your shoes.

But Doctorguest, I find myself lurking and posting here more lately since you have been here (and to check on Sunfish) but I just want to say, I SO APPRECIATE you taking time to READ these posts and INTERACT!!!! I am MOST grateful. I have a great doc and so APPRECIATE all the good, compassionate ones out there. ANY doctor taking the time to READ here is kind to volunteer his time.

Also, thank you for this timely email.

[Maxine]

That's interesting about the long term antibiotic use.

Sounds like Lyme disease is pretty complicated to treat.

Thanks for sharing! Nice of you to take the time to do that for us--

Antibiotics make me so sick, I don't know what I would do if they found I had Lyme disease.

Thanks again!

Maxine :0)

[morgan617]

Thanks for posting this doctorguest....I know we all tell you how much we appreciate your input...but sometimes you find that rare one you can't thank enough.

I am not really surprised by these findings, having been a nurse for 29 years, and seeing the effects of long term antibiotics, that can be as detrimental as the illness they are treating. We saw a lot of cardiac infections, which required 6 weeks of antibiotics. Almost everyone ended up with C Diff or clots or any number of problems.

It would make sense that when you have neuro symptoms, they can tend to be long term or permanent. Neuro cells are the slowest to regenerate, if they do at all. It's very discouraging, I realize, but essential to realize that some things being done may exacerbate an already discouraging problem. Knocking out the bacteria would still leave the damage, it would just stop any further damage.

My guess is that what we would be looking at, is something along the lines of a stroke patient, you get rid of the clot or bleed, but are left with the damage they caused. Hard work and patience to help overcome the deficits.

Hopefully the cause of the neuro damage will be discovered and able to be treated. We all have to do what we think is best for ourselves, but I expect this study will change the current treatments. One more blow for the sufferers. But at least it is being researched, that's something. Small comfort I guess....

[dizzygirl]

interesting article.. thank you very much for sharing it with us.. and also.. thanks for offering your time and suport to us potsy folks.. it means alot

[MomtoGiuliana]

Thanks so much for posting this.

Katherine

[Roselover]

Very interesting article - but through my college and post grad education, I always scrutinze research, reports and conclusions.

For example:

"To develop the guideline, the authors analyzed all available scientific studies on the topic."

Question: How many scientific studies were there to anaylize? and how many were "reliable" studies?

It also does not address whether it is talking about people whose neruo symptoms came on at the onset of lyme and were consequently treated right away with the standard treatment - OR - if it is including those who have lived with Lyme in their bodies for years and years before it was treated. Seems to me there could be quite a difference in this.

And what about this statement:

"This guideline states that long-term use of antibiotics does not improve the outcome in people with chronic symptoms after customary treatment of Lyme disease. Specifically, further treatment does not improve overall health quality of life, memory, or depression. "

That makes complete sense and I think Morgan stated that nureo cells don't regenerate well... but what if, after initial treatment, the symptoms are getting worse? It seems this article is saying that we can't expect to regain the damage caused by the lyme bacteria, but it doesn't address the question of those in whom the damage is increasing. (and we have several members on our forum in this condition)

I am not asking Doctorguest to respond to my questions about the article - I'm just trying to show how even highly thought through medical guidlines often ignore the small handful of people for whom the guidelines do not apply! It's so good for us all to read these newsest updates and take them carefully into consideration. but also to think through what they do not address and to be careful not to apply them in incorrect ways.

One thing, though, that Doctorguest or someone could answer for me is this: What does it mean to have a "guideline" come out from a specific medical academy like this statement?

(BTW ... I didn't read this to be a study... it's a statement - with a reveiw of studies.) One of my fears is that a "guideline" means that they feel there isn't a need for further study. I have other fears about what a "guideline" means... but don't want to jump to conclusions since I really don't know what that means to the medical world!

Just some extra things to ponder.....

~Roselover

[MomtoGiuliana]

I know this is a hot button issue and I surely do not want to get into any kind of conflict over this. I guess my understanding is that medical guidelines have to be based on the scientific studies that DO exist. That does not mean that the guideline would not change, if future evidence is available that supports a change. I suspect that it is not unusual that medical guidelines shift as more studies shed better light on medical conditions of all kinds. For example, I know that a new guideline was issued in the past couple of years regarding treatment of childhood ear infections, based on new evidence.

Katherine

[Roselover]

Thanks Katherine! Well that's a good starting knowledge in which to read these new guidelines. I'd still like to know even more about what it means to those in the medical field.

What hot topic did I jump into?

The only two I could think of were reading and applying articles correctly... or is it Lyme? There was another discussion on Lyme - is that it? I guess I haven't been around enough to know of "hot topics".... just really concerned that I often see articles, studies and reports posted but sometimes we all jump on the wrong bandwagon!

Sorry - to anyone in whom I bushed a button!

Come on everyone, let's just be careful how we read all these reports! Knowing what a medical guideline is, will be very helpful!

~Roselover

[pamyla]

Hi all,

I'm finding this an interesting topic. Since we're discussing methodologies I thought you'd be interested to know more about how the research was collected. The guidelines look to be based on 37 articles, out of 112 that were reviewed. The scientist side of me would be interested in knowing more about the criteria from which they selected their articles

Pam

http://www.neurology.org/cgi/content/abstr...5517.66976.28v1

Published online before print May 23, 2007

(Neurology 2007, doi:10.1212/01.wnl.0000265517.66976.28)

Received December 26, 2006

Accepted March 7, 2007

Practice Parameter: Treatment of nervous system Lyme disease (an evidence-based review). Report of the Quality Standards Subcommittee of the American Academy of Neurology

J. J. Halperin MD, E. D. Shapiro MD, E. Logigian MD, A. L. Belman MD, L. Dotevall MD, G. P. Wormser MD, L. Krupp MD, G. Gronseth MD, and C. T. Bever Jr. MD

From the Department of Neurosciences (J.J.H.), Overlook Hospital, NYU School of Medicine, Summit, NJ; Departments of Pediatrics and Epidemiology and Public Health (E.D.S.), Yale University School of Medicine, New Haven, CT; Department of Neurology (E.L.), University of Rochester School of Medicine and Dentistry, NY; Department of Neurology (A.L.B., L.K.), SUNY, Stony Brook, NY; Department of Infectious Diseases (L.D.), Sahlgrenska University Hospital, Gothenburg, Sweden; Division of Infectious Diseases (G.P.W.), Department of Medicine, New York Medical College, Valhalla; Department of Neurology (G.G.), University of Kansas Medical Center; and Research Service, VAMHCS, and the Department of Neurology (C.T.B.), University of Maryland School of Medicine.

Abstract Objective: To provide evidence-based recommendations on the treatment of nervous system Lyme disease and post-Lyme syndrome. Three questions were addressed: 1) Which antimicrobial agents are effective? 2) Are different regimens preferred for different manifestations of nervous system Lyme disease? 3) What duration of therapy is needed?

Methods: The authors analyzed published studies (1983-2003) using a structured review process to classify the evidence related to the questions posed. Results: The panel reviewed 353 abstracts which yielded 112 potentially relevant articles that were reviewed, from which 37 articles were identified that were included in the analysis.

Conclusions: There are sufficient data to conclude that, in both adults and children, this nervous system infection responds well to penicillin, ceftriaxone, cefotaxime, and doxycycline (Level B recommendation). Although most studies have used parenteral regimens for neuroborreliosis, several European studies support use of oral doxycycline in adults with meningitis, cranial neuritis, and radiculitis (Level , reserving parenteral regimens for patients with parenchymal CNS involvement, other severe neurologic symptomatology, or failure to respond to oral regimens. The number of children (≥8 years of age) enrolled in rigorous studies of oral vs parenteral regimens has been smaller, making conclusions less statistically compelling. However, all available data indicate results are comparable to those observed in adults. In contrast, there is no compelling evidence that prolonged treatment with antibiotics has any beneficial effect in post-Lyme syndrome (Level A).

[doctorguest]

Hi everyone,

I am glad that you found the information useful. Everyone raised good questions, but for the sake of time, I'll concisely reply that the link and the abstract posted by Pamyla are obviously very abbreviated versions. The full-text article provides great details to the methodology - i.e. selection of the particular studies, their data and the conclusion reached in analyzing the combined data from the included studies.

I do want to point out that these Practice Guidelines are written by a group of highly qualified scientists-physicians from very reputable institutions in the US and Europe. This group, called Practice Committee, gathers to review and discuss the best available data in the current scientific literature and then provides a summary of the available data on a specific topic which results in these guidelines. This is extremely important in medicine because it determines how physicians provide patient care and ensures that they are armed with the best scientific evidence to do so. Having said that, these are just that - guidelines, not rules etched in stone. Thus, there are some situations where cases are evaluated and treated on an individual basis, but in general, it's imperative for physicians to review the Practice Parameters to make sure that what they do for patients is compatible with the recommendations set forth by the professional organizations.

I would say that until future studies demonstrate otherwise, the conclusions reached by the practice guidelines are the best evidence we have right now regarding Lyme disease treatment.

[ethansmom]

I definitely don't want to get into any conflicting discussions with this, but I found that information to be very disheartening and am wondering how they came to the conclusions that they did.

As a sufferer of Lyme for at least the last 6 years (probably much longer) and I also run a Lyme support group in my area, I just think that the statements made are true in only some cases. If I took most of the people in my Lyme group who have experienced any degree of recovery, for most of them it has taken anywhere from 6 months to 18 months for that to occur. There are others of course who haven't gotten any releif from the abx and others who are in complete remission. But, I just found that article to be disappointing to say the least, because it basically says if you don't get better in the alloted timeframe than you aren't going to!!

Just my 2 cents!!!

[MomtoGiuliana]

Roselover--no you were not pushing any hot buttons It's just that the general topic of Lyme has at times brought on some heated discussion in the past. So I was trying to tread carefully for that reason.

Katherine

[Roselover]

Thanks Katherine!

And thank you Doctorguest for clarifying - though, I must admit... it does bother me that the original link posted does not even distinquish whether this is disucussing intial treatment for those recently infected with Lyme or the very unusual - but occasional chronic lyme discovered years after the infection. But of course, I still don't expect you to be able to comment on that.

Thank you Pamyla for your post... how did you find this information? I too find the methodology very intriguing AND important to how we interpret and apply information like this.

Ethansmom - I can see how this could be extremely disturbing to you and a few others here on the forum. Many of our dysautonomia "treatments" are non-conventional uses of common treatments. Here, we gather together some very unusual circumstances - and a huge variety.

BTW - I don't have Lyme that I know of or have pursued this in anyway. I just spoke up because I've sat back and read quite a few discussion where a report, news article or study was presented and I was concerned how the wrong conclusions became "set in stone" in our minds. I just thought it wasn't very fair for me sit back and never say anything.

I just want us to be very careful how we read each piece of information AND what kind of conlusions we come to. And I especially want us to remember that we are a forum of people with similar symptoms, but a huge variety of causes and mechanisms. I like the way Doctorguest reminds us that these are general guidelines and even the professional medical community recognizes that there may be special circumstances calling for different choices. And those special circumstances may be here in our midst!

~ The Logical Thinking Roselover

[MightyMouse]

Hi Everyone, I just wanted to say how impressed I am at the tone of this discussion. This is a "hot" issue, but each person here has presented from their perspective to try to be understood in as kind a way as possible. Thanks for making me smile this morning

Nina

ps. I'm feeling old today too b/c this discussion reminds me of similar ones on the email lists (before online forums) regarding Chronic Fatigue diagnosis and treatment more than a decade ago... and in print articles and newsletters before that (I used to belong to a CFIDS group and subscribed to their print newsletter)...

[Roselover]

Guess what I read today Nina? They are now connecting CFIDS and Dysautonomia for some CFIDS patients... and the NIH just awarded several grants to study the connections bewteen CFIDS and the CNS... and Vanderbilt is one of the groups that received a grant! (specifically - one of the autonomic docs!) If you want the links I'll have to go back and look... I know totally different topic... but interesting you mentioned this about CFIDS and I was just reading about it this morning!

Information, guidelines, treatements etc are ever evolving aren't they?

~Roselover

[Sunfish]

rose -

not sure if you already know this or not, but i figured i'd let you know just in case. connections between CFS/ CFIDS & autonomic dysfunction (in some people) have actually been made/ studied for years; the studies i'm aware of were at johns hopkins, though i believe there were others as well. peter rowe was one of the main docs involved with the hopkins studies.

great though that there's going to be more research happening...thanks for passing on the good news.

:-)melissa

[Sophia3]

Yes, Roselover. I remember getting the CFIDS Chronicle in the 90's..and in the mid 90's they started mentioning TTT at Johns Hopkins. Been going on for years as far as I knew, too.

I finally left my CFS specialist, because he did not see a use for a TTT!! BUt I had griped to him on a few visits, "I feel better when I LIE DOWN" and it was missed on him.

I did a letter writing campaign and been seeing my ANS doc ever since.

P.S. Edit: Sorry about the hijack Doctorguest. I HATE when folks hijack my stuff.

But it kinda ties in kinda sorta as LYME was brought up years ago at my CFS meetings in the early 90's, it was dismissed in this area of Ohio. So CFS is kind of a fuzzy dx as is ANS...as is Lyme...lather, rinse and repeat..but at least a no brainer TTT can PROVE gravity issues.

[doctorguest]

Sophia, don't apologize, you didn't hijack my thread because it was not mine to begin with . I posted the information for others because it seems that quite a few people with dysautonomia are also treated for Lyme disease. It's always wise for people to be armed with the most updated research information to then discuss it with their doctors. Together they can then make informed decisions about their treatment.

[Sophia3]

Thanks for being so gracious, Doc.

I guess hijack is in the eye of the beholder.