Thanks for sharing S. Hope to hear more soon or there is a link to order CD if you wish...
Posted by seekhelp (Member # 15067) on :
Great info. Thanks for sharing!
Posted by Pinelady (Member # 18524) on :
I thought this was a great idea...Because its the truth...
Dr. R H proposed that Chronic Lyme is really MCIDS - Multiple Chronic Infectious Disease Syndrome
Posted by timaca (Member # 6911) on :
onbam~ I would not do IV antibiotics without first checking to see if viruses are part of the problem or not.
Best, Timaca
Posted by Terminator (Member # 27328) on :
timaca - if virus titers like HHV6, VZV o other are elevated what's wrong with IV?
Posted by migs (Member # 16496) on :
Thanks for posting.
Interesting what Dr. H said about the herx blend of water, alka-seltzer, lemon, and Glutathione.
I have heard Dr. B mention Flagyl must be taken for more than two weeks several times but I haven't heard why...anyone know?
Posted by timaca (Member # 6911) on :
IV is very expensive and has risks. I was on IV rocephin for 6 1/2 months. It did help. It did not make me well. Treating the viruses has helped a lot.
If you have high antibody titers to certain viruses, I'd treat those first and then see how you feel. Treating viruses is less risky than IV antibiotics.
Basically, assess what is making you sick. Treat what is most obviously wrong with the least risky and most cost effective treatment that you can.
Best, Timaca
[ 11-01-2010, 01:00 AM: Message edited by: timaca ]
Posted by jl123 (Member # 15594) on :
What was not spoken about but which needs to be is...
If a patient is in bad condition, but stable- with good cognitive function, whether or NOT it is simply better to wait this debate and learning stage out for 2 or 3 years- until we know a lot more about how to clear these virus's in the RIGHT combination with the Lyme infections. I think it seems early for those who can wait and who ARE NOT getting worse.
DR's tell us the truth! Lets stop treating those who are very ill and whom get even worse on ABx and herbs. I've been to hell on herbs (herbal babs protocol) and I'm not going back so quick, jeremy
Posted by lou (Member # 81) on :
Assuming you can tell who can wait and who can't.
Those who are very ill may suffer consequences from waiting for the happy day when all is known. Just read the obituaries for lyme.
If you can't take full does of meds, you can take small doses and find someone who knows about detox, if you are one of those who believe in it.
Sorry you had problems with treatment, jeremy. It is not a disease for the faint of heart, and the outcome is not at all certain. Uncertainty is so hard to cope with. We all lose heart now and then.
Posted by TX Lyme Mom (Member # 3162) on :
quote:Originally posted by onbam: "If someone has chronic Lyme but does not do IV therapy, the chances of them recovering are small."
Is this consistent with people's experiences here? I've been avoiding this for fear that once I get 30 days of it, insurance will cover no more antibiotics of any kind.
Onbam, the quote above seems to be somewhat out-dated now, in spite of the fact that it came from a leading LLMD guru. Remember that he hasn't been treating patients clincially for over 5 years now because of persecution by his state medical board, so his bias in this regard has been superseded by the experiences of other LLMDs.
It is my observation that LLMDs nowadays reserve IV antibiotics for only the most actuely and extremely ill patients, such as those who are bed-ridden with seizures, for example. Otherwise, LLMDs are finding that oral &/or IM antibiotic combos can penetrate the CNS adequately in order to deal with neuro-Lyme.
Besides, the most commonly used IV antibiotic (Rocephin) will cause you to test negative on the WB when you are retested, and then the insurance company will say that you are well and cannot receive further treatment. There's a good explanation for how this phenomenon of "false negative" WB lab results occurs following Rocephin usage, but I'm being interrupted and cannot go into detail about it right now.
Posted by TX Lyme Mom (Member # 3162) on :
Thanks for sharing S. Hope to hear more soon or there is a link to order CD if you wish...
Thanks for posting this link, PineLady. Scott always does such a meticulous and conscientious job of note taking and reporting on the conferences he attends. He is to be commended for sharing his notes with us so freely.
Unfortunately though, the link for ordering the ILADS 2010 Conference CDs is burried rather obscurely inside Scott's link, above. So, here is a more convenient direct link for odering the ILADS Conf. CDs, which are a bargain for the vast amount of up-to-date info which they contain.
My set of ILADS 2010 Conf. CDs arrived last week and I am absolutely thrilled with them. Just a couple of sets of slides alone are well worth the modest $40 price that I paid for the entire set, and it's a fine way to support ILADS and to get something in return for doing so.
My favorite two talks so far are from the plenary session -- namely, the slides by Dr. H. about co-infections and the set of slides by Dr. A.C. on pediatric Lyme. (I haven't gotten any further than just those two yet though.) You can even print out a copy of the slides you like for more convenient usage later.
These slides contain answers to questions that you never even knew to ask. I cannot recommend them highly enough. You won't be disappointed, I promise, and they are also useful for sharing with your local area family doctor or PCP in order to gain his/her back-up support while you are being treated by an LLMD.
Posted by jl123 (Member # 15594) on :
"Assuming you can tell who can wait and who can't.
Those who are very ill may suffer consequences from waiting for the happy day when all is known. Just read the obituaries for lyme.
If you can't take full does of meds, you can take small doses and find someone who knows about detox, if you are one of those who believe in it.
Sorry you had problems with treatment, jeremy. It is not a disease for the faint of heart, and the outcome is not at all certain. Uncertainty is so hard to cope with. We all lose heart now and then. "
I think you don't understand me. I FEEL BETTER without meds, I feel better with light exercise- walking a mile or two, taking supplements and acupuncture. Some of us simply stay stable and in fact we get BETTER on our own. Abx IN ANY AMOUNT often leads to no-where or to feeling worse for a very very LONG period of time for some.
SOME of us really are BETTER OFF waiting for new developments- which this year seem much greater than in recent years; even if we are in an injured/compromised/fatigued state.
Why should some create more inflammation more herxs, more pain, sometimes its not bravery as you say, its simply the SMART thing to do, if you are stable and don't want to get worse right now. A livable life is often better than an unlivable one.
Posted by Pinelady (Member # 18524) on :
You can wait all you want or you can learn to take care of all the problems or find yourself a LLMD.
Treating virus', detoxing, bowel protection, co infections.
IMO there can only be those that treat the MCIDS and those that don't.
Even if that means you must start with baby doses and puke your guts out, stay bed ridden for months, and take 2 years to get to a fork in the road...
If you wait on them to find you a quick fix---good luck---most do not even believe there is any organism as capable as Borrelia- Why would they believe you need treatment over 4 weeks?
Either way has risks--Treating getting much worse, before you get better. Or not treating and having to deal with possible cell division out of control. You walk a fine line in determining your outcome and inevitably it is up to the patient.
I will always fight for MCIDS treatment. Because I do believe this is what causes cancers in the first place.
Posted by Terminator (Member # 27328) on :
I'm also a fan of the MCIDS (Multiple Chronic Infectious Disease Syndrome) theory
Posted by lou (Member # 81) on :
Yes, guess I didn't understand. You started by saying patients in bad condition, then it switched,or seemed to, to people who are stable and getting better on their own. So, this was confusing. And it is up to the individual how they want to respond to their medical condition. No one is forcing treatment on people. Make your own choices.