posted
I have been on abx since sept 2007. I had severe headaches, brain fog, joint pains and sickness. I have only had an "abnormal" negative lime titer and do not know the specific bands or whatever.
I felt much better into 2008 and then started having back pains and stomach trouble. I just have arrived at a point where I do not seem to be getting better and I do not know why.
I just went to see an infectious disease doctor last week thinking they might have a better idea (can't help but wonder if it is lyme). That doc said my LLMD is wrong to put me on abx and that I should stop them immediately.
I also had a blood smear ordered by the LLMD for Bart and it was negative.
My biggest problem is extreme soreness in my back (upper and lower) that comes and goes and feeling extremely sick with pins needles after any exertion or moderate exercise (usually next day).
I just want my life back and do not know what to do. I am on zith with minocycline right now, which was switched from doxy and biaxin.
I also am taking olive leaf extract which does not seem to help.
Please, could someone please offer some proof that I should indeed be on abx and that the CDC guidelines are garbage. If this the case then why are the CDC guidelines not more in tune with what all of you claim?
Thanks for anything you can offer
-Bill
-------------------- "Sometimes trouble just follows a man" - Clint Eastwood as Josey Wales Posts: 40 | From Pittsburgh, Pennsylvania | Registered: Aug 2007
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seekhelp
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posted
I wish you luck. You're facing the eternal struggle many are here, including myself. Of course, I'm sure the ID doc is feeling healthy as a horse, going to work every single day, making money to support his/her family, etc.
I'm dealing with the exhaustion after any activity issue as well. it's disheartening. Whether or not the LLMDs or IDSA docs are right, I'm just not sure yet.
I go both ways at times. I know the IDSA cares less about me and my issues. I know LLMDs are here to help AND make $$$. Proof goes both ways. I can't say I've read every bit of literature on the stuff as Pam W, Keebler, and others here.
My gut feel is so so many here are still so sick that I often wonder just how right this is. However, if you're the lucky one to improve and get your life back, that's wonderful. It's a roll of the dice. I ask myself can I live with the way I feel today?
I'm not there yet, but I'm just not sure I can go 2-3+ years treating with risky Abx w/o 90% improvement+. It seems like some LLMDs don't know how to toss in the towel and others are too quick to. What I'm trying to say is I just don't know.
I wish there was a comprehensive place with 100+ articles PROVING the existence of Chronic Lyme. I'd love to have them all on CD.
I'm a facts kind of person. In UOS, the accusations about patent ownership and that stuff doesn't sway me that much. I want pure proof of existence.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Keebler
Honored Contributor (25K+ posts)
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posted
-
P.S. to longer part below:
Okay - I blended both replies together for a total reply - mostly because brain fog had me thinking it was just one long reply when I'd scroll back up to see if I covered everything.
There was only one post when I started composing my note, but the second one must have appeared while I was working on mine and when I kept scrolling up for reference, I thought it was all one single one.
I am far too tired to go back and separate which comments go with which post above. Sorry.
Still, I hope this helps prompt some thought for what else might just be the key to moving this along on tracks for success for both posters.
==========
If you've been treating since 2007 then I'm sure you've done a lot of research yourself. Go back over the articles by the ILADS authors and re-read some of that.
You'll remember that this cannot be cured and that some patients require treatment for many years before remission.
You'll also remember that some of the labs used by most doctors do not do the correct tests - even for the coinfections.
Zith and minocycline can be very hard on some patients.
What liver support supplements have you been taking all along?
What adrenal support?
Are you gluten-free?
Did the LLMD before the ID doctor test you or assess you for other coinfections?
Please don't do the "Prove It' thing. We are all volunteers here and that is a huge burden to place on us. Chronic lyme certainly does exist. But, from reading, it is clear that the IDSA knows next to nothing about how severe lyme can be - other TBD.
ILADS doctors, on the other hand, have dedicated their lives to studying more and sharing information among themselves.
ILADS doctors usually also require the support supplements and stress the importance of good self-care. (Oh, while OLE is great for me, if it does nothing for you, I'd say stop it. Not every one finds it to work for them. There are dozens of other great support measures.)
Some ILADS doctors also go beyond the TBD to consider other chronic stealth infections. I'll bet your ID doctor did not assess you for Cpn, HHV-6 or mycoplasma - or, if he did, what labs did he use?
You want proof. No one here can go down that path. We don't have the time or the energy. What we can do is offer the suggestion that your ID doctor falls way short.
And if you are not seeing progress with your LLMD, after assessing your self-care and support supplements, you might consider finding another good ILADS-educated doctor who is well versed in the wide range of chronic stealth infections so that you can either rule out some or zero on others if they may be part of the reason you are not seeing success.
Also, though, I know it seems like a long time but, really, treating for about 1 1/2 years just may not be long enough, even if this is just chronic lyme. Some have to treat for several years - but you should be seeing some improvement along the way at this point in time. Something may have been missed.
Good luck as you go back over your options. I can assure you, though, if you are looking for 100+ articles proving the existence of chronic lyme before you trust a few of the excellent articles that discuss it, you could be sick for a very long time.
Asking for 100+ articles so that you can be convinced is a very tall order. If you want pure proof of existence - it is there but not in 100 articles.
If you watch the DVDs of the past ILADS seminars, you'll be able to better understand the nature of the spirochete in all its shapes, forms and life cycles.
Progress can not be achieved until the nature of the spirochete is fully understood and, then, that's just a beginning.
-
[ 04-21-2009, 03:12 AM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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seekhelp
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posted
OK Keebler, I'd like to view 10 articles. I'd just like to educate myself more on the research done to date. I know I was being a little unrealistic.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Keebler
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posted
-
Seekhelp,
Look over some of the links that I've posted a few times at your threads. See Nicolson's article, MacDonald's work on biofilms and this one:
Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
Bill, it's hard to know what to tell you other than hang in there. I can also tell you that I'm in the same boat. I have not treated continuously like you, but I have tried many abx to no avail.
Somehow I'm still working and at this point that's flabbergasting considering my fatigue levels at times.
Obviously, quitting is not an option so I would suggest trying something you haven't tried before and try it harder. That's what I plan on doing this summer.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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METALLlC BLUE
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posted
Get specific testing through Igenex.com -- their Western Blot is far more sensitive and may provide the information you need. Test #188 and #189 are the correct tests.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
Keebler
Honored Contributor (25K+ posts)
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posted
- Lymeorsomething,
Remember, too, that when the liver is overwhelmed, fatigue is one of the top results, with pain and brain fog.
The care of the liver figures highly into the success of any overall program for chronic infections.
For anyone with fatigue, it may be good to explore all the ways to lessen stress on the liver . . . Singleton's book "The Lyme Disease Solution" has some good ideas.
And NAC is a good protector for the liver, too. Milk Thistle is good but not everyone does great with that or some need more support.
==========
One other note: if anyone is eating any processed foods, be sure that they are free of aspartame and MSG (both are neuro-toxic). You'll have to google for all the names of MSG.
Mold exposure, too, need to be ruled out.
If you have a bed that inflates by the numbers, some of those have been found to be molding inside. But, be VERY careful if you unzip to look.
Have you tried chiropractic or osteopathic work on your back? Not everything we have trouble with is Lyme Disease.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Leelee
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posted
quote:Originally posted by METALLlC BLUE: Get specific testing through Igenex.com -- their Western Blot is far more sensitive and may provide the information you need. Test #188 and #189 are the correct tests.
I was going to suggest this too.
gismatrix, do you have a copy of your original WB? If not, perhaps you could request one from your doctor. If you post your results, some of the knowledgeable people here may be able to help you interpret the significance of certain bands.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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posted
My feeling is that when there are medical controversies, especially about chronic diseases, then individuals must make their own decisions about who to believe and what to do.
If you don't think you are getting better and not sure of what you have, then stop getting treatment and take the consequences of your decision, whatever they are. Maybe you won't get worse, maybe you will. We sure don't know and are not here to convince other patients of what they should be doing.
Anyone who goes to an ID doc after seeing a LLMD is risking action against the LLMD, because they have been reported to state medical boards by such people. If you gave this ID doc your treatment info and identified him/her, then you may have caused big trouble. Do as you like about your own health, but don't endanger others.
Posts: 8430 | From Not available | Registered: Oct 2000
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seekhelp
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posted
Lou,
I understand your concerns, but do you all really think these LLMDs are as cloaked as made out on LN? Geez. Anyone can jump on this board and get a list of names in 5 minutes. I really think the medical board knows EVERY single LLMD in practice. Yes, someone can start issues of course, but that can happen from a variety of sources (insurers too).
The poster just wanted a second opinion due to doubts. I don't blame them one bit given the time that passed. LLMDs are good, but as I always say they are not gods.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
It might be more of a problem because then the ID would have a case history and a cause to report. I don't know if they can legally just make a report on hearsay of what they've heard someone has been doing through the grapevine.
My two cents, but I don't know much
[ 04-22-2009, 10:50 AM: Message edited by: John S ]
Posts: 743 | From New York | Registered: Apr 2009
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I agree. I have been seeing an LLMD for Lyme for the past 2 years. I hadn't sought a second opinion until today when I had my first visit with an Infectious Disease doctor.
I don't think it is fair to label every ID doctor as "out to get the LLMD's", I bet a fair amount are also just trying in help in the way that they've been trained to and based on their own beliefs.
I was very impressed with my appointment today. She did not comment on anything I had been doing with the LLMD or all the antibiotics I had taken other than to say that it "complicates" things and could possibly make it harder to pick out "what is what" which is a fair statement.
She has all of my past bloodwork, test and history. She has also ordered up her own tests covering other things as well as lyme. She will come to her own conclusion.
She made sure that I understood that nothing we discussed or any conclusion we came to was meant to undermind what I've been doing with my LLMD and that at the end of the day I was an adult and should go with whatever I felt the most comfortable with.
She seems geniunely concerned with helping me and coming to her own conclusion.
She also mentioned that for the most part they follow IDSA guidelines for treatment, but also made a point that those would be changing soon (we all know why!!). This lead me to believe that she feels they are inadequate as well. Which no doesn't make her as brave as LLMD's for going off the beaten path but I wasn't looking for her opinion on treatment I was looking for her opinion on diagnosis.
In the end though what I am trying to make sure of and what others are as well is that we have the diagnosis right.
I trust my LLMD 100% when it comes to the treatment of lyme.
But when it come to diagnosing it, when you primarily only see lyme patients, I think it would be pretty easy to mistakenly diagnose things as automatically being attributed to lyme.
My point is. There is nothing wrong with a second opinion if you are questioning things. I wish I would have done this earlier...it would have been a lot less complicated.
And if you are going to get a second opinion I think it's wise to get your money's worth and see someone who might not automatically be viewing things with their "lyme glasses" on.
Just make sure you do your homework. I spent a whole day googling ID names in my insurance network. The one I settled on seemed to at least recognize Lyme as an epidemic as she does presentations on "Lyme Awareness"...this was a huge plus in my view.
I haven't even heard her opinion yet, but based on how she handled the appointment I believe it was money well spent.
Posts: 101 | From Living in the Now | Registered: Mar 2009
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posted
Most doctors probably would do nothing. The problem would be the 1%.
I called my regular doctor to inform her about testing for co-infections and that the Lyme she diagnosed me for was still giving me problems.
I did this after another doctor put me back on medication. He said he would keep treating as long as it took, but he was giving a low dose that didn't seem to help so I moved on.
Well anyway my regular doctor starting asking about what treatment I was doing and the length. I told her I was on doxy, but I only told her another month. Something didn't feel right with the tone of her questioning. I was only 2 months into Lyme at the time and knew very little.
[ 04-21-2009, 02:07 PM: Message edited by: John S ]
Posts: 743 | From New York | Registered: Apr 2009
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Keebler
Honored Contributor (25K+ posts)
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posted
-
In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about:
posted
lyme-info.net, lymecryme.com, ilads.org, and lyme-rage.info should hold the answers you seek.
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richedie
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posted
Risky Abx?????? What risks? I have been on for a year and have gotten better....no adverse side effects. The so-called risk are hyped.
Personally, I woud rather have the small risk than know I have a life of pain and torment! If you had cancer and it took 5 years to knock out, would you quit and say forget it, not worth it?
Stop relying on tests! First of all, Bartonella tests are a big JOKE! Just to start, they test for a few strains of the hundreds of strains in existence and they find more all the time!
Even infectious disease text books state these infections are a clinical diagnosis, not something you determine via test. For some reason, these mainstream docs ignore this or are too stupid to realize the error of their ways. I would kick that infectious disease doc to the curb!
Guarantee he drinks the same Koolaid as the others.
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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posted
With all due respect each of our bodies react to things differently and as displayed on this board not everyone gets away with no side effects or even gets better for that matter.
Congrads on your success though. That's awesome!
Posts: 101 | From Living in the Now | Registered: Mar 2009
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Hoosiers51
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posted
I agree with Metallic Blue. Get a Western Blot IgG and IgM done from Igenex, and see what it says.
Unless you can pull out your old Western Blot and look at which bands were positive. Some bands are more specific to Lyme, and some can be triggered by other infections.
Read Dr. C's Western Blot explanation that is at the topic of the Medical Questions page to see the list of the bands that are considered more Lyme-specific. If you have even one of those bands, I would suspect Lyme.
Then, it might be worth retesting with Igenex if you have not.
How disabled by this are you exactly?
The pins and needles seems like it could be a Lyme symptom, but back pain can be due to Lyme, or it can be due to other things. With back pain it is harder to know what causes it unless you notice it gets better with antibiotics or flares badly with antibiotics.
Do you have other symptoms? Like after exercising, are you significantly worn out too, or is it just the pins and needles that gets you?
If it is a just a few symptoms that don't bother you too much, you could also look into herbal Lyme treatments and see if they help.
Or the pins and needles could be a circulation issue too, so maybe look into the supplement Wobenzym (I recommend this to everyone because I love it...I am not affiliated wtih company).
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
Did the infectious disease doctor offer what seems to be a better treatment? If not, then the doctor's telling you to stop the treatment you are already on is senseless IMO.
Posts: 727 | From USA | Registered: Mar 2006
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Shooting down someone's idea/approach without offering a better one is a pretty weak arguement.
I would imagine since you just saw him last week he ordered his own battery of test and you will have a follow up appointment soon.
Do you know what test he ordered? I truly hope your appointment did not only consist of him telling you to stop another doctor's treatment.
That's isn't why you went in there. You went in there to find out what is wrong with you.
Posts: 101 | From Living in the Now | Registered: Mar 2009
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posted
I agree that telling me to stop treatment withough any alternative treatments or testing is senseless. The IDD will not run tests on me. I was really disappointed with the doc. In a way I knew what this doc would say...right in tune with the ISDA guidelines.
I just can't understand why I got so much better and now feel crappy - and have different symptoms than before, including exercise intolerance due to feeling sick afterward.
Perhaps when I went from doxy/biaxin to mino/zith I was not improving anymore. I have had stomach/GI issues throughout this ordeal also. I get numerous pvcs with the GI issues also. The anxiety is the worst part.
The steady high blood pressure at 160/105 despite being on ACE inhibitor has me worried too...
I have been tested for co-infections, even a clean blood smear. I have no trace of anything, even lyme.
I just do not know...I question everything - and do have some hypochondriatic tendencies. I think I have a spinal infection, fungal infection, lyme, etc.. and just do not know what it is.
I thank all of you for posting to this thread here. It has been helpful and I have gained some new ideas/material to review.
I will try to stick with the treatment and perhaps get the IGENEX test. I will try to get my earlier test results and will post them here eventually.
Thanks for the replies and understanding.
-Bill
-------------------- "Sometimes trouble just follows a man" - Clint Eastwood as Josey Wales Posts: 40 | From Pittsburgh, Pennsylvania | Registered: Aug 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
I'm going to take a vacation from my computer for a while (or try) so I'll post several threads that may have information to consider:
---
If the liver is not working well, there will be exercise intolerance and feeling sick and fatigued afterward - sometimes for days.
In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about:
I would encourage EVERY person who has received a lyme diagnosis to get the following tests.
- at link.
===========
And, if you are still here, congratulations for sticking with all the replies. We all want each other to feel better and you are getting a lot of suggestions. Hope something helps get you on the right track(s).
BIOCHEMISTRY OF LYME DISEASE: BORRELIA BURGDORFERI SPIROCHETE / CYST
by Prof. Robert W. Bradford and Henry W. Allen
EXCERPT:
. . .
A discovery of great importance relating to a toxin produced by the causative agent of Lyme disease, Borrelia burgdorferi, has been linked to a similar toxin produced by the organism Clostridium botulinum (botulism).
. . . .
- Full article and great photos at link above.
-----------------------------------
NOTE OF CAUTION: While this is an excellent article regarding the information about the spirochete/cyst, there is one serious caution with one of the treatments suggested: Bismuth.
Bismuth, in various forms or methods of use, can (and has been) fatal. So, cross that off your list. If you download the article, please copy and paste this note to top your page.
Reading - and learning - about the nature of the spirochete is invaluable. The authors offer much in that regard, I'd just wish they'd adequately cautioned bismuth.
Botulism (Latin, botulus, "sausage") also known as "Botulinus Intoxication," is a rare but serious paralytic illness caused by botulin toxin.
. . .
Paradoxically, antibiotics (especially aminoglycosides or clindamycin) may cause dramatic acceleration of paralysis as the affected bacteria release toxin.
posted
I have had lyme for 20 years. Just diagnosed last year by a Fibro and Fatigue doctor because of course other than being in my head, that was what was wrong with me.
She discovered I had lyme disease, I was CDC positive on the WB through Igenex. She put me on antiboitics.
I, not understanding the lyme controversy, went to an ID doctor. It was a waste of 2 trips. I told him my meds, but never my doctor and since then, I have found a LLMD.
Needless to say, this ID doctor told me to quit my antiboitics too, and after hearing him rant and rave about lyme doctors and there is no lyme in florida and don't even bother going to a lyme doctor, I decided that none of the mainstream medicine has ever helped me, and I am following my LLMD.
That is the only test that positively shows me something is wrong. If I had problems with my LLMD, I would find another LLMD before going to an ID and telling him about my LLMD regime.
If you think that your treatment is not correct, then please, stop the meds and see this doctor and tell him your symptoms and let him decide what is wrong with you, please don't compromise our LLMDs. If I loose my LLMD I would loose my mind....
Shalome
Posts: 893 | From Florida | Registered: Dec 2008
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Tincup
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posted
"I might be more of a problem because then the ID would have a case history and a cause to report. I don't know if they can legally just make a report on hearsay of what they've heard someone has been doing through the grapevine."
Ducks go to great lengths to hurt our LLMD's.
Some really scummy ones have not only turned our doctors in to medical boards...
But have offered their own help to personally train officials on how to sneak in- pretending they are a sick patient- to gather evidence to burn our doctors.
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
That is really sad Tincup. How slimey of these ducks. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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That is sad...sad, sad world we live in where we can't get help because of greed and ignorance.
And, to me, if you (the ID Doctors) feel passionately about something, PROVE it ligitemately, don't sneak around. If they truly believe there is no lyme, then get your butts out there and find out what is wrong instead of saying.......ugh, fibromyalgia with no cure.....
This is really aggravating the crap out of me!!!
Shalome
Posts: 893 | From Florida | Registered: Dec 2008
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Pinelady
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Member # 18524
posted
What does your doctor say about the 2 weeks Igenex
says they need off antibiotics to get true test
results? Would this be enough time for patient to
decide if symptoms returning? I know some of mine
did in one day.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
You know when you quote me Tincup I feel like an idiot because I see all the mistakes in my typing. Should have been It.
I usually proofread everything once and still omit words and letters. I rarely did this before lyme.
Posts: 743 | From New York | Registered: Apr 2009
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timaca
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Member # 6911
posted
Ask the ID doctor to test you for enterovirus and HHV-6 (and Cpn)
posted
I would agree if they had proven conclusively and beyond a shadow of a doubt that Chronic Lyme doesn't exist, antibiotics don't work, and that these doctors were actually harming their patients for their gain that they should be stopped, but that isn't so. Their side has not demonstrated this beyond the argument of I am right and you are wrong while studies do show Lyme persists.
Maybe if they let the LLMD's do their thing and let patients decide their own healthcare I wouldn't be in the mess I'm in now.
I had one of the best LLMD's on the planet a few miles away, but he doesn't practice anymore due to the atmosphere.
There is no one I know of on Long Island treating this aggressively, while there used to be quite a few.
I have to Drive hours upstate to an LLMD I can afford without bankrupting my family. One who takes insurance and doesn't treat as aggressively as I would like to but seems like my only option. Even if you can afford to see an aggressive doctor you will have to wait sometimes months, all the while letting the disease entrench itself.
If information wasn't restricted maybe it wouldn't have taken me months to figure out what the deal was and I wouldn't have wasted my time with mainstream medicine.
If the insurer's didn't block treatment and go after these doctors maybe my options would have been made aware to me from the outset and I could have gotten the treatment I wanted.
I got incredibly ill and got the rash and was told I was "lucky". After three weeks of medication the illness subsided but I still was feeling unwell and they asked me if I was neurotic.
A couple of weeks later after being told to IGNORE the symptoms the joint pain started.
I went to an ID, he said it was possible one treatment could fail. I wanted intravenous, he put me on amoxicillin.
I got sicker. I went to a Lyme doctor on Long Island and had 3/4 of the symptoms on the symptom list, I said I wanted Intravenous, he gave me 100mg of doxy twice a day. I got worse. If he could treat like I know he would like to treat maybe I wouldn't be here, which might be a relief for you =)
My uncles doctor finally took pity on me and put me in the hospital for intravenous and then homecare. My joint pain subsided and a few symptoms went away. That month of IV has been the only thing that put a dent in this.
I wonder how many of these people are decaying or just living in purgatory just because doctors, even Lyme doctors fear to treat like Burrascano.
Oh well I'm in the boat with the rest of you, please excuse my ranting =)
Posts: 743 | From New York | Registered: Apr 2009
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
B12 injections will help also magnesium oraly,Complex b vitamins,CQ10,and Multi vitamin and contin with abx's ID doc on the most part as dumb as h*ll when it comes to lyme.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
The thing is that lyme docs will look for other things. They don't call everything lyme. And most patients who get to lyme docs have ALREADY been to a number of other docs and got a lot of different diagnoses, and treatments (or no treatments) that failed.
ID docs will mostly fail to do a good differential diagnoses. They will not adequately consider lyme. They will usually want a positive test, regardless of how poor the testing is, and if by some miracle you do test positive, you will get 3 weeks of antibiotics.
If you are not well, regardless of how long you have been sick, tough. Then you will be told you are a hypochondriac or you have some other disease, or since you did not respond to the (inadequate) treatment they provided, maybe you never had it at all!
Anyone who believes that hearsay would not be used against a lyme doc has not been fully informed about what has been happening for the last 15 years.
Yes, it is hard to figure out what to do in the face of such a controversy, especially when you are wanting to believe that it is easily curable, like the ducks say. Who wants to think they have a chronic disease?
And it is also true that it has become nearly impossible to get adequate treatment now. Most docs are afraid, with good reason. If the IDSA guideline review goes against us, there are going to be a lot more people going to the cemetery early.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
And a painful ride to the cemetery it will be, though I think I'll call Kervorkian before I let it play its full course.
I'm still new to this relatively, but my main point was that I didn't see a hearsay case heard over the grapevine as damaging as someone getting a patient and his medical record, but I pleaded ignorance in my statement.
My original Post in full:
"It might be more of a problem because then the ID would have a case history and a cause to report. I don't know if they can legally just make a report on hearsay of what they've heard someone has been doing through the grapevine.
My two cents, but I don't know much"
[ 04-22-2009, 12:11 PM: Message edited by: John S ]
Posts: 743 | From New York | Registered: Apr 2009
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posted
If you you treat heavy eventually it probably will come out sometime, unless you only treated family and they paid for everything without insurance.
Posts: 743 | From New York | Registered: Apr 2009
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
This should help clarify that IDSA has not only stifled and ignored the majority of Lyme and Chronic Lyme research findings, but they have even ignored THEIR OWN RESEARCH FINDINGS, where they give evidence for chronic infection.
Some of their OWN research and statements give evidence against their current conflicted-interest guidelines (conflcit of interest and corruption that was PROVEN with investigation by the CT Attorney General):
In 1992 and 1993, IDSA author Dr. Mark Klempner published two studies in the Journal of Infectious Diseases documenting how Lyme "spirochetes can survive antibiotic treatment through intracellular sequestion within fibroblasts" making them "among the small number of bacteria that can cause chronic infection by localizing within host cells where they remain sequestered from some antimicrobial agents" (1993; 167:1074-1081).
Or as he stated in the same journal"The Lyme disease spirochete . . . can be recovered long after initial infection, even from antibiotic-treated patients, indicating that it resists eradication by host defense mechanisms and antibiotics . . . several eukaryotic cell types provide the Lyme disease spirochete with a protective environment contributing to its long-term survival" (1992; 166(2):440-4).
Likewise, Dr. Raymond Dattwyler proclaimed in Reviews of Infectious Diseases 1989, 11(6)S6; S1494-8, "Lyme borreliosis is a chronic infectious disease caused by the spirochete Borrelia burgdorferi . They [Lyme spirochetes] have been demonstrated in tissues obtained from individuals with high levels of antiborrelial antibodies, a finding that indicates the presence of immunity alone does not guarantee eradication of this organism."
In a New England Journal of Medicine study, Drs. Dattwyler and John Halperin (also of the IDSA) "studied 17 patients who had presented with acute Lyme disease and received prompt treatment with oral antibiotics, but in whom chronic Lyme disease subsequently developed."
These "chronic Lyme" patients tested negative on currently-available blood tests: "Although these patients had clinically active disease, none had diagnostic levels of antibodies to B. burgdorferi on either a standard enzyme-linked immunosorbent assay or immunoflourescence assay. We conclude that the presence of chronic Lyme disease cannot be excluded by the absence of antibodies against B. burgdorferi and that a specific T-cell blastogenic response to B. burgdorferi is evidence of infection in seronegative patients with clinical indications of chronic Lyme disease."
Dattwyler RJ; Volkman DJ; Luft BJ; Halperin JJ; Thomas J; Golightly MG. Seronegative Lyme disease. Dissociation of specific T- and B-lymphocyte responses to Borrelia burgdorferi.
New England Journal of Medicine 1988, 319(22):1441-6 A year earlier these same two researchers reported on "the clinical courses of 5 patients with Lyme disease who developed significant late complications, despite receiving tetracycline early in the course of their illness.
All 5 patients had been treated for erythema chronicum migrans with a course of tetracycline that met or exceeded current recommendations" (Failure of tetracycline therapy in early Lyme disease. Arthritis & Rheumatism 1987, 30:448-450.)
In 1993, Dr. Halperin co-authored an article entitled ``Recurrent erythema migrans despite extended antibiotic treatment with minocycline in a patient with persisting Borrelia burgdorferi infection'' in the Journal of the American Academy of Dermatology, 28(2 Pt 2):312-4. The title says it all: Even ``persisting Borrelia burgdorferi infections'' can occur, with manifestations as odd as a recurrent bull's-eye rash (erythema migrans).
Or as Dr. Halperin wrote in Neurology in 1992 ((42):43-50), "In many instances continued infection appears to be essential for symptoms to persist, no matter how small the number of organisms, as antimicrobial therapy is generally followed by clinical improvement."
Or as Gerold Stanek (also of IDSA) put it in the British Journal of Dermatology in 2001, "The relapses she repeatedly suffered despite initially successful antibiotic treatment could be related to the observation that Borrelia [the Lyme disease bacteria] may possibly be able to remain dormant in certain tissue compartments, thus escaping bactericidal antibiotic activity" (144(2):387-392).
Or as Allan Steere, guru of IDSA on Lyme, told the American Journal of Medicine in 1995 (88:4A-44S-51S), "Similarly [as in tertiary syphilis or tuberculoid leprosy], the antigenic stimulus in Lyme arthritis would appear to be a small number of live spirochetes, demonstrated here by monoclonal antibodies, which may persist in the synovial lesion for years (p.494)".
Or as Dr. Steere, wrote in the New England Journal of Medicine (1990 Nov 22; 323(21):1438-44), "The likely reason for relapse is failure to eradicate the spirochete . . . This last article is one of many studies that show continuing symptoms are most likely due to persistence of the spirochete [type of Lyme bacteria]." Indeed, many articles have been published before AND since 1990 demonstrating the possible persistence of Lyme infection in antibiotic-treated patients.
These studies have been written by members of the IDSA Lyme "team" and many other reputable scientists. And they are among the 98% of available literature on Lyme not cited in the IDSA's newest treatment guidelines!"
posted
"Some of their OWN research and statements give evidence against their current conflicted-interest guidelines (conflcit of interest and corruption that was PROVEN with investigation by the CT Attorney General)"
For real...I hadn't heard this. It was proven by the board, or presented by a petitioner.
Shalome
Posts: 893 | From Florida | Registered: Dec 2008
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
quote:Originally posted by Need Lots of Help: "Some of their OWN research and statements give evidence against their current conflicted-interest guidelines (conflcit of interest and corruption that was PROVEN with investigation by the CT Attorney General)"
For real...I hadn't heard this. It was proven by the board, or presented by a petitioner.
Shalome
I'm not quite sure what you mean by:
"It was proven by the board, or presented by a petitioner."
It was proven in an IDSA Board corruption investigtion by the Connecticut Attorney General. Sorry if I am not understanding you.
So, yes, that is why the IDSA is having to create a new Lyme Guidelines Board and review their guidelines with someone chosen to provide oversight to the committee that would be unbiased.
The members who were found to have conflict of interest were removed, and new ones must be vetted by the oversight provider who was chosen jointly by the Attorney General and IDSA.
Unfortunately the deck is still stacked against us due to some rules that were put in place by that overseer, and were then agreed to, that still allow for bias to continue (no LLMDs will be allowed to be on the committee, if they make over 10k a year treating Lyme).
Also, other committe members are being chosen that seem to have their own conflicts of interest.
There is a lot of discussion of this topic, especially in the Activism forum.
Review session is soon, and the public review and information entry period that was also agreed to in the settlement is about to begin.
posted
The ID doc won't test me for anything. I will ask the LLMD, as he is more likely to test me for other culprits. I did not even know about Cpn until now...very interesting and could be something I am dealing with currently.
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