"Topic: Excellent new post on LymeMD blog: IV success story " in General Support where a girl miraculously recovers after IV treatment
that makes me wonder if IV may not be best for all of us???
I know some people say "no" but I am curious - and have to decide what to do with my own life, soon
if the extreme cases respond so well - wouldn't it follow that the not so obvious cases also would benefit most from IV, even if the outward signs are more confusing in this group
I mean, do the extreme cases tell us things that we should all listen to???
I am still trying to learn wnat is best to do in my case - I am not physically disabled (yet) but my mind is gone and I had many physical symptoms (nerves, muscles, joints) for a decade and now have CNS symptoms that have me out of work
I need to get back to work ASAP AND PERFORM there to save my job
would IV save my brain?
I can stay on orals since I am not physically dying (heart, muscles, etc still function) but is my brain damaged more and more without the IV going after the bacteria???
-------------------- Persistence, persistence, persistence!!! "Nothing in the world can take the place of persistence... Persistence and determination are omnipotent." attributed to Calvin Coolidge Posts: 599 | From USA | Registered: Jun 2011
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James1979
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posted
IV is usually used for neurological Lyme cases, because it usually works better there.
Many good LLMDs say that for the difficult cases, it works better to start with IV and switch to orals, than the other way around.
But IV has some drawbacks, and it isn't without it's dangers. Also it's very unpleasant, and very expensive.
That's why some LLMDs suggest to start with orals, and if the orals aren't fixing the problem, then to switch to IV.
Personally, if I can be cured with orals alone (and I think that I pretty much have), I'd much prefer orals to IV. Plus I saved thousands of dollars by not having to use IV.
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posted
Makes a difference what drug is used. Many relapse after being given IV Rocephin. Some probably relapse because their doctor did not use a cyst buster such as flagyl along with it.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
IV can be very helpful in certain cases (like advanced neuro) but it is not a fast, easy, or sure cure.
Most doctors don't like to prescribe IV's because there is more risk. There are more possible side effects, complications from having the IV device, and more work coordinating care.
You also have to remember that all treatments will take time. Whether you are on oral or IV meds you will probably need to try multiple different combinations of antibiotics to get well.
We all want to be well NOW but it doesn't happen that way. We have to be patient with ourselves, keep treating, and make sure that we are living a healthy lifestyle that supports healing.
Find a doctor that you can trust. Make sure that you are looking at all areas of your health. Antibiotics for Lyme alone might not be enough to make you well. You need to look at coinfections, hormones, heavy metals, immune system, diet, detox, sleep, etc...
Posts: 5237 | From here | Registered: Nov 2007
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scorpiogirl
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I was on oral meds for over a year and now on IV going on the 4th month. BOTH are hard in their own ways. There are pros and cons with both as well... so I can't say I prefer one over the other.
However, in my case I'm seeing more progress in the 3 months on IV than I ever did in the year on orals. So in my case IV seems to be working out better.
-------------------- Posts: 1391 | From Lyme Land | Registered: May 2011
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I have had symptoms for almost 20 years. First just unexplained chest pain/inflammation and then, after a few more bites, the real bad arthritis and nerve conduction problems and now the CNS symptoms with memory loss and dyslexia and anxiety attacks, a real mess.
I am pretty sure I have Borrelia, Babesia, and Bartonella and the CNS symptoms are what people refer to as late-stage neuro-Lyme, I think.
I did appeal to my doctors many times but they just turned me away: "There is no disease with your symptoms" is what I remember one saying - and I kept completing the sentences for him: "...that you know about." Still he was unwilling to help. That was over 5 years ago.
A bull's eye rash this June turned my attention to Lyme with a bitter-sweet Aha!-revelation.
I am on medical leave now and struggeling to find a way to get back and perform well in time, so I can have my job back!
I saw two data points from experts: Dr. Martz saying "slow and steady wins the race" in Pam Weintraub's book Cure Unkown, and Dr. Burrascano's Guide to use IV when sick longer than a year....
Sure, the financial burden and the invasiveness of the IV scare me, but it also scares me to deliver too low a dose of antibiotic to the brain and keep having Bb do more and more damage in there while I drive it in deeper with orals that reach the brain in possibly low concentrations or possibly not at all.
My LLMD does not do blood level checks like Dr. B suggestes and I would see as essential as well...
Of course, I do have the stiff neck return now on minocycline and that may well be a sign of Borrelia dying and the immune system kicking in again with menigitis, which I have not had for a while. So that may be a good sign that the orals are working fine?
Those are my concerns!
Thanks for listening and any (more) input is much appreciated any time!
-------------------- Persistence, persistence, persistence!!! "Nothing in the world can take the place of persistence... Persistence and determination are omnipotent." attributed to Calvin Coolidge Posts: 599 | From USA | Registered: Jun 2011
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sammy
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Minocycline is one of the oral meds that crosses the blood brain barrier really well. So yes, you may be experiencing a herx.
Posts: 5237 | From here | Registered: Nov 2007
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Another option is Bicillin injections, Dr. B. says they are just about as good as IV. I have been doing them 3x a week and I am getting better, I'm at about 85%. I've been on them for almost 6 months. I think they are way more convenient and a lot cheaper too.
Posts: 845 | From Northeast | Registered: May 2011
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I have Lyme arthritis and symptoms like urinary tract infection that have been going on for months now. I'm on 200 mg daily of oral minocycline from my rheumatologist. So far, the Lyme arthritis is not receding.
My neurologist says that my Western Blot results, at 8 bands, and some signs of mild neuropathy suggest that I should have a spinal tap, (lumbar puncture), to test for Lyme bacteria in my spinal fluid.
If the result is positive, he says that the treatment is intravenous ceftriaxone.
Does that sound like what's needed? I'll only consent to a procedure like a spinal tap if it's the only right way to go about it.
Thanks very much, Pete B.
Posts: 4 | From Concord, MA | Registered: Jul 2011
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ktkdommer
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posted
I just watched Dr. Burroscano's DVD's from his March workshop and he stated a study that the frequency of Lyme being detected in spinal taps is very low. I would think you could google to find out more.
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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scorpiogirl
Frequent Contributor (1K+ posts)
Member # 31907
posted
Pete, I had the spinal tap and mine fluids were "pristine". So I agree that it's a useless test if you're looking for Lyme! I have severe Neuro Lyme w/ peripheral neuropathy.
Bicillin injections did not work for me other than giving me excruciating pain in the butt (literally). In addition to that my insurance REFUSED to cover the injections for $850 for a month supply is equivalent to what my IV is costing now. I don't know how much longer my insurance will cover my meds... but for now I'm grateful!
-------------------- Posts: 1391 | From Lyme Land | Registered: May 2011
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it is so difficult when each body seems ot react so differently and with so many Bb strains and co-infection combinations out there
again, thank you for writing! I am so grateful for all input
yes, Pete, I would NOT do a spinal tap for Lyme alone (only if another condition makes it important to do the test to rule out something else)
Dr.B's lecture said that a specialist in NY showed it was only 9% accurate for detecting Bb bacteria even in acute Lyme menigitis patients - you can look up the reference - it is on this DVD: http://lymedisease.org/lyme_store/lyme_store_burrascano.html
If my doc would hinge Bb treatment on a spinal tab test, I would not hesitate to get another opinion / a new LLMD, unless you feel like you can discuss these references with the doctor and they can explain why a spinal tab is needed in your particular case
best of Luck to you!
-------------------- Persistence, persistence, persistence!!! "Nothing in the world can take the place of persistence... Persistence and determination are omnipotent." attributed to Calvin Coolidge Posts: 599 | From USA | Registered: Jun 2011
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