I have had orals and IM Bacillin multiple times since 2003. Currently have positive blood culture for Lyme. But symptoms not as bad as they can get. Extreme fatigue, sound sensitivity, feet hurt, headache. But memory not as bad as can get, and no crawling under skin or nausea. So new LLMD recommended IV and old LLMD concurred. But am I sick enough? To go thru the picc line and eight weeks IV which I have't yet heard if I can get coverage for. Will it really help? New LLMD also checking on co infections and immune function.
Posted by AuntyLynn (Member # 35938) on :
Yes. Check for coinfections. Sore feet can be a symptom of one of them. (Bart?)
There is nothing like IV for crossing the blood-brain barrier. If you are having light and sound sensitivity this is a sign of neuro Lyme.
Eight weeks of IV is usually not enough for chronic neuro Lyme, according to the Dr. F 2008 study, and the Dr. S 2011 Study. Dr. S's research found that between 25-52 weeks IV was necessary to resolve neuro infections. My Mom had 28 days IV for a 15 year old infection, 2 years post-treatment she is living in a memory care ward.
Your insurance will likely only pay for 30 days.
You might also want to treat for parasites first, to see if that helps.
IMHO the real question is not "am I sick enough?" but, "am I well enough?"
Posted by WendyK (Member # 18918) on :
I'm so glad I started my picc - it got me past the plateau I was on. At the point I started the IV, I was much better off than when I started the orals, but the orals just weren't doing the job. Its taking more than 8 weeks though... I'm on month 4 - improving, but not done yet.
Posted by seibertneurolyme (Member # 6416) on :
Have you treated bartonella aggressively yet? In my opinion without at least some prior treatment for that infection IV treatment for lyme will go slower and be less effective.
Bea Seibert
Posted by AuntyLynn (Member # 35938) on :
WendyK -
Thanks for that info! IMHO there is nothing, and I mean NOTHING as effective for neuroLyme as IV! All of the latest studies use IV abx (why is that?), and Dr. S's 2011 published results showed that between 25-52 weeks of IV was necessary to resolve neuro symptoms, and KEEP them resolved! (He says treat 'til symptoms resolve, then treat another 2 months.)
Also, it has been my observation that the folks who say that they have "treated" with IV and that it "helped, but didn't cure" their Lyme, MOST LIKELY only treated IV for a month or two. Not NEARLY long enough according to latest studies! But unless you are independently wealthy, you are not likely to get this aggressive treatment. So I cringe when I see folks say that - because I know that the chances are that they stopped - or were advised, or forced, to stop treatment - before the effective dose was met.
Look at Ray Kehrhahn of Connecticut. 22 years with Lyme that made him "near catatonic" - he gets dxd with Lyme by a CT LLMD, goes to Columbia University (NY)for treatment, and NINE MOS. of IV later, he's running a Triathlon!
WendyK - I would be really interested to know the name of your LLMD. Could you PM me?
Posted by faithful777 (Member # 22872) on :
I am improving on IV 6 months now. I have a port. Orals were just not doing it by themselves and GI upsets are still there. Hitting coinfections hard now.
LLMD said to stay on IV one more year and then orals for approximately 2 more years.
Posted by lymeinhell (Member # 4622) on :
I'd be looking into coinfection treatment first before taking that final plunge.
And FWIW - I got well on 9 mos of orals after being undiagnosed for a decade. But, we started coinfection treatment day one.
Sound sensitivity can also be related to other things, such as adrenal exhaustion and magnesium deficiency.
When one becomes chronically ill, it's typically a whole pile of things going on, and each one (such as detox, mineral deficiencies, parasites, heavy metals)needs to be addressed. No amount of antibiotics (IV or oral) is going to fix this stuff - it is something you and your doctor need to figure out and address. Just my 2 cents.
Hope you find your way to better health soon.
Posted by Bluesfatique (Member # 37432) on :
Thanks everyone. I got coverage for one month. Maybe will be exrended for another. Does anyone know a ballpark figure for self pay if I need to do that?
Posted by faithful777 (Member # 22872) on :
Depends on what drug you are using for IV. Infuserveamerica.com is the best for cash pay. I didn't expect anything past 28 days from my insurance but they have paid for 3 months so far.
You can call Infuserve and get a therapy quote. Your supplies will vary depending on whether you are using a picc line or a port.
Rocephin 28 day kit for a port with supplies using an elastomeric device is $699. Will be a bit cheaper with a saline bag.
Other drugs are less. I am now on IV Clindamycin and it is much cheaper than Rocephin.
Posted by cht girl (Member # 26170) on :
my insurance has paid for 6 months of IV antibiotics so far this year, and paid for 3 1/2 last year. But I did contact my local infusion pharmacy ahead of time to see if they could match InfuservAmerica's cash price in case my insurance stopped paying, and they did last year.
I was able to do IV ANTIBIOTICS and all supplies for under $600 per month, now would pay $320 per month for 4 doses of IV AZITH a week x 4 weeks a month plus all supplies. I would recommend contacting your local infusion pharmacy, it was cheaper than Infuserve on supplies and saved me $50.00 a week to overnight the drugs. Good luck,
Posted by cht girl (Member # 26170) on :
And, by the way, IV has made a HUGE difference for me, I have been nearly symptom free for a couple of months, and my LLMD and I am attempting weaning from IV soon, I hope to say I am entering remission....
Posted by AuntyLynn (Member # 35938) on :
cht girl - Would you mind sharing with us what your most prominent symptoms were?
It's really great to hear success stories! How many months were you on IV before you reached the stage of "symptom free" (2 months ago)?
I expect you will be IV free real soon! Congrats!
Posted by katiebobatie (Member # 28753) on :
i WISH my llmd would have treated me with my IV from the start!!!
the year and a half i was on orals did not help me at all... i just kept going down hill.
iv treatment is the only thing that has helped me AT ALL so far.
i encourage you to try it before you get any sicker!
even with iv treatment my health is a major struggle.
i feel like i lost another year and a half of my life while i was on orals.
if you have been on orals since 2003, and you are still having all those symptoms, i definitely do not think they are enough for you!
so if iiiii were you, i would definitely try iv treatment for sure!
it is up to you though Posted by Bluesfatique (Member # 37432) on :
I feel very encouraged by all of you. I feel so out of it that I don't trust my decision making, but both my old LLMD and the new one think IV will help and the new one is more on top of confections. If worst came to worst re insurance, I think I could come up with The money for the continued IV.
Posted by CD57 (Member # 11749) on :
you need to treat for coinfections, have you done that?
Also it may be worth looking into getting compounded IV meds is that possible?
Posted by Bluesfatique (Member # 37432) on :
New LLMD is retesting lots of confections I am still waiting results, but he wanted to start the IV rocephin now.
Posted by AuntyLynn (Member # 35938) on :
Blues - You have two LLMDs recommending that you could benefit from IV. What have you got to lose? (Except maybe some of your symptoms?)
Also, most coinfections need to be treated with OTHER specialized medications. If your tests for cos come out positive, there is no reason why you can't treat both at the same time.
If you have gained some results from IM, you can likely expect to gain even more with IV. IV doesn't give Bb a BREAK ... so that it can morph or regroup. The goal is to keep a steady effective dose in the bloodstream, so you can bust this bug. Pulsing, or intermittant IM just won't do that.
If it were me, I would want these bugs DEAD, and I would treat as aggressively as I could possibly handle, and try to get well as soon as I could. The whole reason why so many Lyme victims linger on in disability is because with IDSA recommendations, we were NOT treated aggressively ENOUGH to begin with! When controlling the colony might have been so much EASIER!
But ultimately, it is your decision.
Posted by seibertneurolyme (Member # 6416) on :
I also want to add that in my personal opinion if you do not do flagyl -- preferably IV flagyl -- while on the rocephin you could easily just put the lyme into cystic form and have it all to do over again in the not too distant future. For most long term infections tindamax is just not strong enough.
And I strongly urge you to treat coinfections while on IV if not before. Or once again you will end up treating lyme again in the not too distant future.
Hubby is proof against the old theory that treating lyme alone is enough. I am not even sure that lyme is the dominant infection in everyone. Hubby has much worse neuro symptoms from bart and from babs than from lyme.
This is not medical advice, just my opinion based on hubby's experiences.
Bea Seibert
Posted by AuntyLynn (Member # 35938) on :
Funny, neither the Dr. F IV study, nor the Dr. S IV study used flagyl... just Rocephin.
As for coinfections - I agree. Seems like they can hold up progress against Lyme. But often doctors can't even detect a CO, until they start treating for Lyme. It's kind of a Catch 22.
Bea, your hubby is a particularly difficult case, in that he has a severe toxicity problem too! He is very lucky to have you on his side in all of this. I wish you guys only the best.
Posted by faithful777 (Member # 22872) on :
I think that you will find that most of the successful cases treating Lyme use some kind of cyst buster. It takes second for Lyme to go into cyst form when you go on abx.
If you don't use a cyst buster of some kind,nyou are a ticking time bomb. I haven't been to an LLMD yet that didn't use a cyst busting drug.
Posted by AuntyLynn (Member # 35938) on :
Well frankly, I wouldn't question the methodologies of Dr. F of Columbia University or Dr. S, who is an ILADS Executive.
Perhaps they just wanted to see if ceftriaxone alone would do the trick?
But apparently, the longer course that Dr. S used DID do the trick for neuro Lyme patients.
Posted by seibertneurolyme (Member # 6416) on :
Aunty Lynn,
Sorry to disagree but Dr F at Columbia has very little experience as a treating physician. He did oversee the clinical trial, but the point of that trial was more to see whether cognitive improvements were long lasting. As the doc is a psychiatrist he would obviously be interested in supposedly measurable cognitive improvements. And maybe one of the reasons the improvements did not stick was because without a cyst buster the lyme was not erradicated.
I would ask patients of Dr S -- my guess is that he does use cyst busters but I don't know for certain. Also can't remember when that study was done -- as I said in another thread -- when hubby first started treating in 2003 none of the docs used cyst busters. The research on that subject is very recent.
Bea Seibert
Posted by AuntyLynn (Member # 35938) on :
You have every right to your opinion, and point well taken about Dr. F merely overseeing the clinical trial.
Here is Dr. S's study, published September 2011 - --- Int J Gen Med. 2011; 4: 639�646. Published online 2011 September 6.
Benefit of intravenous antibiotic therapy in patients referred for treatment of neurologic Lyme disease
Raphael B Stricker,1,3 Allison K DeLong,2 Christine L Green,1,3 Virginia R Savely,1,3 Stanley N Chamallas,1,4 and Lorraine Johnson1,3 1International Lyme and Associated Diseases Society, Bethesda, MD, USA 2Center for Statistical Sciences, Brown University, Providence, RI, USA 3California Lyme Disease Association, Marysville, CA, USA 4QMedRx Inc, Maitland, FL, USA Correspondence: Raphael B Stricker, 450 Sutter Street, Suite 1504, San Francisco, CA 94108, USA, Tel +1 415 399 1035, Fax +1 415 399 1057, Email [email protected]
Please note in the full article, second paragraph under "Treatment Protocol":
For the purpose of this study, only patients receiving intravenous ceftriaxone were included in the analysis. Patients with allergy to ceftriaxone were excluded from the study, and the ceftriaxone dose was determined by the treating physician. Patients on ceftriaxone therapy had liver function testing performed every 2 weeks, and ursodiol therapy was offered in conjunction with this antibiotic to prevent gallbladder toxicity. Probiotic therapy with daily oral acidophilus and/or saccharomyces was routinely recommended to all patients to prevent Clostridium difficile enterocolitis, as previously described.11 Ursodiol and probiotic therapy were dosed according to the manufacturer�s recommendations.15,16
----
This is why I have the distinct feeling that cyst busters MAY not be necessary with IV... because IV is a much stronger, and more effective, treatment protocol! (As anyone who has done both seems to consistently affirm - see comments above.) My impression is that because IV is so much stronger than orals, it doesn't give Bb the CHANCE to go cystic! IV does more damage to the spirochete, more quickly!
Both Dr. B and Dr. S have said that their latest protocol is treat until symptoms are resolved, and to THEN Treat for an Additional TWO months!
So one might logically conclude, that if anyone quits IV before their symptoms are RESOLVED, they can expect to suffer a relapse.
Posted by faithful777 (Member # 22872) on :
One of those doctors in this study is my LLMD and I am on Flagyl with IV. So things do change all the time!
Posted by cht girl (Member # 26170) on :
AuntyLynn,
My neuro lyme presented as what some would term "Lyme ALS". I have muscle fasciculations, progressive muscle and weight loss and progressive weakness, along with hypotension and unstable CNS... low BP, low respiratory rate...etc....
It took 7 or 8 months of IV therapy (along with oral Flagyl or Tindamax as cyst buster) to have periods of near symptom free
Around April or so, I had my last "flare" of muscle fasciculations, weakness etc... So, it took nearly a year of steady IV therapy to feel like I began to enter remission...
I don't want to speak too soon... but I am hoping to be at a point where my body can now handle the bacterial load with only herbals soon, or maybe just pulsing Tindamax perhaps (since Dr. S's study demonstrated it looked to be effective against all 3 forms......)
I am praying this will be the case but my LLMD will wean me off IV, and I may not know for 3-4 more months.......
Posted by AuntyLynn (Member # 35938) on :
cht girl -
Wow, that's quite a story! I am so glad to hear your doc kept you on IV long enough for you to begin to feel "near symptom free."
Compare your treatment history to so many on these boards who have only been given 2-4 mos. of IV!
I am absolutely convinced that once Lyme crosses the blood/brain barrier, patients need very long term and aggressive IV abx to get rid of it. And the longer you have been infected, the longer the treatment needed.
I often send the Tindazole study to folks who think they have just been bitten.
It seems apparent that another aspect of the IDSA treatment failure, is that they are not addressing the cystic form. My Mom had an obvious cyst just over her left wrist knuckle for months, that showed up right after she had been given drugs for a urinary tract infection. Her GP was "clueless!"
If you don't mind Cht Girl, would you PM the name of your treating physician to me? Just curious to know if he/she is someone I have already heard good things about.
Thanks so much for sharing your treatment story. I wish you every success in regaining your health!
Posted by AuntyLynn (Member # 35938) on :
Thanks for that info Faithful!
I expect that treatment protocols will be "in flux" for a while, unless and until they find one basic protocol that seems to work for many patients.
Perhaps with the addition of Flagyl or Tindazole, IV treatments might get shorter? We can only hope!
But to my mind, the biggest breakthrough will be when EVERY insurer is required to PAY for the neccessary treatment - whatever that may be!
Until then, folks will deteriorate, finances and families will fail, and the damage to society will grow exponentially.
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