lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
I have severe neuro lyme. I have had exposure to cortisone shots and CNS symptoms.
For 15 months one (ILADS) LLMD hasn't suggested it and another non-ilads said I need to try all oral abx first.
I am lingering and cannot convince them to give me IV..this is so weird!
I am almost ready to try an ID Md - I know that sounds crazy, but even the IDSA guidelines say "IV Rocephin" for neuro Lyme!
What do you think the reason of this is? I have suffered at 10+ pain levels for almost 2 years, I feel like I can't do this much longer, it is too much!
The orals aren't working, the Bicillin made things so much worse...where do I go from here?
My sadness is turning in to madness in every sense of the word! How do you get a LLMD to put you on IV??
This has gone on too long and blows my mind they just keep on with the orals. I am getting very suspicous that they just want me coming back as long as possible.
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
YOU HAVE A GOOD DOCTOR!!!!!!!!
IV complications include DEATH from sepsis or an infected line or clot!!! IV should never be done unless all other options have been explored or the person is severely neuro!!!!!!!!! I LOVE IV Rocepihn but if my daughter relapsed I would NOT put her on it. I would get her on orals and then IM after that but I would avoid IV unless it was the only thing left to try!!! IV Rocephin saved my life- I was going to die anyways and it was worth the risk- your doctors have seen complciations and they care about you!
My take on it*)!*)!)! Sincerely, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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CaliforniaLyme
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posted
p.s. If you had brain lesions or vasculitis a LLMD would put you on IV wihtout hesitation I am sure- because those things can impair life dramtically or even cause death (anoxic encephalopathy can cause death). SO... if you have THOSE things and are not on IV your doctor sucks!!! But I don't remember you saying you do_!!! So I would guess your doc really cares about his/her patients and worries re complications (with good cause, they do happen-)
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
i also have severe neuro problems. the twitching and fevers went away with orals. I am in no hurry to try IV, but its only my 3rd month on tx. (been sick 12 years)
as for the pain, are you on pain meds? I am on extended release morphine as my base med and vicodin for breakthrough pain.
pain is a very difficult thing to deal with. I had to go to a pain specialist. find a good pain clinic or physiatrist, or someone who specializes just in pain control.
chronic pain itself can cause severe neuro problems if left untreated, and also its inhumane.
Posts: 615 | From maryland | Registered: Oct 2007
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posted
I wholeheartedly agree with Sarah. There are risks to IV. My husband was hospitalized with sepsis due to his IV. He nearly died- I'm not just saying that, for real he got very close to death. It is a real risk. After 7 months on it, he had to have it pulled (as in literally pulled out of his chest). He was in the hospital for a week.
It has been nearly 3 months since that episode and he is no better than he was before the IV. Actually, in many ways, he is worse. I cringe writing that.
Maybe he was a rare one, maybe not, but it really was no magic bullet for him and I'm afraid we have wasted another year to this horrible disease.
As far as ID docs go, we just went to one thinking maybe this isn't lyme after all. The result was that he ruled out many horrible things, but he couldn't rule out lyme.
Anyhow, I hope you find relief soon. I'm so sorry you have to go through this.
-------------------- Mary Posts: 25 | From CO | Registered: Oct 2003
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charlie
Frequent Contributor (1K+ posts)
Member # 25
posted
....Listen to Sarah!))))))*!!))))
IV is for when nothing else works!!
Charlie
Posts: 2804 | From Texas | Registered: Oct 2000
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posted
I'm no expert in this incredibly controversial subject, but I imagine there's SOME reason your doctor isn't suggesting IV tx.
Have you ASKED your doctor why?
I know each individual case has so many variables, and our doctors have different approaches for each of us. It's so frustrating when you just want a frickin' ANSWER!!!!!!!!
My doctor wants to do IV abx, but we're waiting on the IGeneX testing to come back. I think it's for insurance purposes, but I'm so confused and tired that I can't tell up from down right now.
What's the deal with the gallbladder? Someone mentioned that. If you don't have your gallbladder, does that create a problem with IV abx tx?
If so, I've got a problem........my gallbladder was removed when I was 27. (I'm 48, which really has nothing to do with it, but..........)
Anyway, I'm sorry you're having such a rough time right now. This is a never-ending roller-coaster ride, isn't it? Someone turn it OFF!!!!
Take care,
terri3boys Posts: 268 | From Texas | Registered: Aug 2007
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Andie333
Frequent Contributor (1K+ posts)
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posted
I also agree wtih Sarah and Too,
I've also had severe neuro symptoms, and I was treated several times with high-dose prednisone prior to my LYme dx. My LLMD never even suggested IV, and after 2 years of oral abx, I'm back at work.
I'm really glad I listened to her, especially considering the cost, not to mention the risks. For me IV would only be covered a month on my insurance, and that would have made any sort of effective treatment prohibitively expensive...so much more than already very expensive Lyme treatment.
Andie
Posts: 2549 | From never never land | Registered: May 2005
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
wow.
well, IMO i have no issues w a picc line or iv
again, everyone is different and i acknowledge that.
as my knowledge of tbds has increased, i do think orals can be effective enough in some cases in order to avoid iv.
personally, i lost all my speech and ability to walk, see, or think, so iv ROC was 1st weapon obviously.
its nine months later and i still have the picc w no issues. im not even on iv right now just doing heparin therapy and there is no reason to remove it. (yet)
humbly, derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Hi - thanks for responses.
I am aware of sepsis and I too was so near death, I seriously have no HOW idea how I survived to this day, my family is amazed too. It is a miracle I am sitting here today and without IV!
I don't know either if I would need a PICC line, hospital right around the corner dose outpatient IV treatments.
The way I see it I am already risking my life by having this disease, my nervous system is damaged and I would hate to see test results of any heart test, that is scary.
All my "blood" labs are normal - they have "played" with the idea of a SPECT scan, BUT said it really isn't worth it and have assured me it would NOT change the course of my treatment!
The only reason I've been given a reason why they haven't gone the IV route, is that I haven't tried all orals yet. So after I have no stomach, intestines, gallbladder then I guess I will get IV.
I do have the best pain management MD- very good and very concerned. But nerve pain is very uncontrollable. LLMD agrees that all his neuro patients are the most severe pain-wise and it is impossible to control. The bacteria has to die.
I have lost reflexes in my legs!
Instead he has now prescribed a dangerous abx like Cipro for Ehrilichia and NOT Doxy, he won't prescribe it, stating it could cause stomach aches! Cipro side effects are nueropathy!!! I am losing faith in these doctor's very fast.
I honestly believe especially the ILADS Md is not doing all he can for me - everyone around me is upset at this doctor for changing very little, in fact nothing and urging me to fire him and move on.
Anything that has changed for me, the non-ILADS MD gets all the credit.
Meanwhile, I have no life, so what is the risk? I am existing and dreading each day I open my eyes to yet another day of nerve pain head to toe and an LLMD prescribing off the wall abx, or that could intensify the nerve pain.
Really tired of it and wonder if I'd be better off if I just stopped treatment entirely and let nature take its course - whatever that would be.
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
I'm so sorry to hear how frustrated you are. Sounds like you are goin nowhere FAST.
Is your pain doctor not able to keep you more comfortable with pain control?
I started treatment with multiple brain lesions, hyperacusis, violent headaches, encephalopathy, bilateral peripheral neuropathy in my arms, the IQ of a petunia, and some pretty awful neurological stuff.
Or, as my neuro called it, "MS."
STILL, my LLMD started me off on orals. (I also had a CDC positive blot and a recalled bite with EM rash.)
I'm pretty glad he did, as it made the IV look like a piece of cake down the road, so to speak.
If you feel a particular drug (Ceftin, i.e.) is increasing your pain/neuro stuff in your legs, you really should ask him for a switch. Though doxy is NO walk in the park, as I'm sure you know if you've been treating a long while.
The doctor might also fear that your bacterial load is still too high to put you on IV, or your general health too frail, and that it could cause you more harm than good at this point. That's a big consideration. For me, it was almost anti-climactic after the orals I'd gotten through.
I'd really consider having a long talk with him in earnest. Hopefully, a friendly talk. Write down your questions -- I STILL do this!! Else I get so carried away I forget them all. Go through them one by one and write down his answers. (Else you'll forget them by the time you get out to your car.) They really don't mind repeating - especially since they are aware we're gonna forget!!! They really DO have our best interests in mind and try to have a plan, albeit one that is flexible enough to change and accommodate our needs and abilities to cope.
Wishing you luck, and sending a hug!!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
Lymebytes- I totally agree with you here. It sounds like it would be worth it to try very hard to get on IV rocephin in your situation if you are willing to take the risks.
You clearly understand the risks of IV but honestly I am surprised that with your symptoms your doc wil not put you on rocephin if you really understand and accept the risk.
I have nowhere close to your symptoms and my LLMD put me on IV rocephin after I nudged him into it.
I think you should be honest with your LLMD. Tell him that even CDC guidelines recommend rocephin in severe neuro cases, rocephin is effective, you understand the risks, and cannot take any more oral antibiotics and want to try IV treatments.
If your LLMD is not receptive, I would find another LLMD who would pursue that route.
If your organs are very compromised already, your LLMD may be worried about further damage from IV. But if it's not about your case and is an inflexible philosophy that every oral should be tried before IV, that may not be so good for YOU if YOU believe in IV treatment.
Based on your story, you don't sound like a terrible candidate for rocephin and it sounds like you tried practically everything else already.
I hope you will fight to get the treatment you believe in and be honest with your LLMD about what you need.
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
LymeBytes_!!!!)*)!*!
I was on Cipro for a YEAR with no side effects and it was an awesome drug for me- why not try it? Cipro can do amazing tihngs sometimes!!! And I had no problems with my etndons on it at all- it DOES happen but it is a minority- and with me the Cirpo got rid of my last remaining neuropathies- which may be why your doc wants you to go on it- it can do that!!!
Derek, I was in your boat- I was on IV for 9 months and it saved my life- but sounds like you & I were both near the valley of the shadow-!!
Lyme Bytes, I would talk to your doctor frankly and express your frustrations. You have a right to know why- and to give your input- and then hopefully he will be able to explain his decisions. If his logic doesn't sway you, you can always see another MD!!! I'd give him a chance to explain though-
Best wishes, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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lymebytes
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posted
Hi Sarah, Of all the drugs that wouldn't normally scare me, Cipro is one of them, I have taken it long before Lyme several times for UTI's and had zero problems. But I didn't have nerve damage and pain.
BUT now with having severe neuropathy and nerve damage, it scares me that it could it make it permanent, (I'd like to think I still have hope)read this and maybe you will see why it scares the crud out of me!
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Yeah- but it does say it is rare- and that to continue when the neuropathy has begun can result in irreversible damage- BUT that is saying it IS reversible if one discontinues when one notices it!! At least I read it that way-
Still, less risk than IV!!! Seriously!! Sincerely, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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My family Dr put me on IV right after my dx. It was the one and only time I ended up in the ER. My bug load was so high..I got really sick, and also ended up almost losing my gallbladder-after only 3 weeks on IV. Been on orals for 14 months-killing my stomach, but hopefully, my new GI doc will help.
Posts: 561 | From eastcoast | Registered: Aug 2006
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lymebytes
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posted
Hi Sarah,
I don't see where it says if you stop it is "irreversible" I read it again (I edited the post & posted a better link, identical article from another site, easier to read this way- to find other article and MANY like it google cipro neuropathy) Here is what it does say: "Symptoms were typically long term, with 91% exceeding 1 month in duration, 71% exceeding 3 months, and 58% exceeding 1 year. Twelve cases (27%) lasted longer than 2 years!" (Maybe I missed it, please tell me where the "irreversible" comment is)
I have read about everything there is to read that Burrascano has written and Burrascano makes it clear, when cortisone or nueropathy or illness more than ONE year is involved -IV is necesary. I fit all 3! I am also chronic as chronic an be and likely had LD percolating for 10+ years, before the massive explosive event that nearly killed me.
My personal opinion, risk of IV isn't a risk I'd be afraid to take, I'd jump at the opportunity. LD is much scarier! In all the studying I have done, I have read of only 2 people that had sepsis and both survived. On the flip side I have read many more obituaries of those who died of LD.
Having chronic Lyme more than one year actually re-writes the DNA in the body and incorporates its own! It causes serious immune system breakdown.
It seems like Russian roulette to keep a chronic patient on oral abx! These LLMD's are building resistance to the antibiotics (which we may need if we have a bacterial infection other than LD in the future and they may not work) and they are building a stronger spirochete!
I would think playing these games with orals is only going to result in a spirochete so tough in the future, only chemo will by any LD patients hope, forget any abx, that will be a thing of the past because abx resistant strains will be impossible to kill.
Why "try" something that may work, when there is something available that WILL work??
Their are so many LD forums sadly filled with people not getting well, those who are well were on IV at some point in 99% of cases.
In one of the conferences Burrascano says IV is necessary, not once but likely several "rounds" and that it is being proven in studies in other countries to successfully treat LD.
Weighing the risks of what may happen on IV against what this disease is capable of shouldn't be a choice at all. I receive hundreds of emails per month. You wouldn't believe their stories, many under treated and are dying.
I understand your concern with sepsis. It however is not a concern of mine. The more I deal with LLMd's, the more it confirms 2 things, they want a patient long term (sadly money talks and b...walks, IV works and they aren't using it). 2). We are just guinea pigs in uncharted territory, 30%+ of us will never be well, likely because IV was not used soon enough.
posted
Terri...If you have no gallbladder you'll be fine. Rocephin is known for sludging and destroying gallbladders in short order.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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daise
Unregistered
posted
Hi Lymebytes,
I hear you--through your pain and frustration.
This has been a good thread of replies.
What comes through loud and clear is to talk with your doctor. I have to type my questions, or my "Lyme brain" will forget. I write down docs replies. Then I go home and type it, so I can refer back to it, because my "Lyme brain" forgets things.
There needs to be solid communication between you and your Lyme doctor. Ask what the plans are for you.
If you have a real LLMD (some docs say they are to get your business, but really aren't Lyme-literate) then trust that your doctor is trying to help you. But ask your questions. Just say: Doc? I'm concerned. Do you plan to prescribe IV Rocephin for me? Do you think I'm going to be a good candidate?
Most (or all?) Lyme antibiotics have to work in a partnership with your immune system. However, you took a few or several courses of Prednisone. That wrecks your immune system. Perhaps doc is trying to build-up your immune system. That could be the core of the problem.
Perhaps doc is trying to lessen your big germ load? That could be crucial, for any future kinds of antibiotics: if your germ load is too high, the herxes from some antibiotics or combinations of antibiotics could bring on really hellaceous herxes--herxes that could cause damage.
You may have prednisone damage that prevents you from taking IV Rocephen.
It's too bad LA Bicillin IM shots didn't work for you because (you probably know this) it crosses the blood/brain barrier almost as well as IV Rocephen. LA Bicillin doesn't get processed in the GI tract the way orals do.
Did you herx on LA Bicillin IM shots? Whew! I did for 6 1/2 weeks--and loved every awful moment! (Because I knew something was being killed off!)
It's so very frustrating ... The whole Lyme thing.
I'm thankful you aren't taking Prednisone anymore for a wrong diagnosis.
Try having a good talk with your doc to find out his or her reasoning on this.
terri3boys: A number of Lyme patients get gallstones from taking IV Rocephen. (Or they had them before starting Rocephen.)
I did. I got small gallstones that aren't causing a problem. For me, I thought that if taking IV Rocephen meant I would have to have my gallbladder removed due to stones, well, that's OK. I wanted my brain back!
I took IV Rocephen for 6 months and I'm grateful.
I even used ursodial throughout, to help prevent gallstones. If I hadn't, maybe they would have been larger and caused a problem.
lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Hi Daise, Actually, the herx was so severe on Bicillin I had to stop, it was either stop or herx to death. I was having some very scary pains in my spleen area, which I just had ultra sound this past week and it is ok..phew!!
I KNEW it was crossing the BBB! I read that it doesn't, but I was so scatter brained I couldn't hold a conversation. The nerve pain was intolerable, I was in pure agony. I couldn't believe a herx this bad could hit after 15 months of orals.
I've mostly tolerated very well Amoxi/Biaxin - and I am functional on it, but not well. I have at least one co-infection that still needs to be dealt with as well.
I am seriously considering Bicillin again. Not right away, in a month or two. I'd like to try Doxy for a couple of months and then go back to Biaxin/w Bicillin.
I have this problem with herxing...it simply won't stop, unless I stop it! That is the way it has been with every medication. If the pain wasn't so widespread and excruciating (especially the nerve pain) I could hang in and do it. I made it 6 weeks, I was proud I made it that long! Now 3 weeks after stopping, everything has settled down considerably, but it took weeks.
Now I am thinking maybe I should go another 'round of Bicillin until the herx gets so bad I have to stop - I might have to pulse it, that would be a first I am sure. But when I did Bicillin, I was on orals as well, Amoxi & Biaxin, Amoxi prolongs it sort of like probencid. Next time maybe I will kick the Amoxi and I can go longer.
I have at least one LLMD willing to prescribe Bicillin. He really is willing to do anything I can tolerate to get me well, but not IV, he wants me on orals or Bicillin only.
The ILADS md just disagree's with everything my other LLMD wants for me. But he has no idea what my symptoms are either! He relies 100% on the the tests (he runs Igenex tests everytime I see him) and that stupid CD57, determines ALL treatment. He never asks about my symptoms, never has! He looks at the tests, writes the script and says good bye. He has no idea what my symptoms are, all he cares about are the blood test results. Period.
The ILADS llmd won't prescribe anything other than orals, has flat out said no to Bicillin, he has watched my Ehrilichia titers DOUBLE and says nothing. I asked for Doxy for co-infections and he said no it could hurt my stomach, so he gives me a nerve destroyer instead, Cipro...just nutty!
I think I am dropping him and going back to my original non-ILADS LLMd who wants me on Bicillin. It is a bummer because my insurance covers the ILADS MD and not the other LLMD I like.
I received a PM about this ILADS md from someone who just can't stand him and saw him also and called him a horrible doctor - very harsh, but I don't think he is the miracle worker I thought he would be either. How can a LLMD not ask what your symptoms are? LD is a clinical diagnosis w/treatment based on symptoms. I am not happy with him and I have heard others aren't either.
I wish it was prednisone! No, I wasn't on Pred, even worse (over a year now since any) I had received cortisone INJECTIONS! It was a bomb, I can't believe I survived.
Thanks for helpful advice - I am going to try Bicillin again soon. For now, my non Ilads LLMD says Doxy will be great for me and then I can return to Bicillin in a few months.
Take care.
(ONE more note regarding Cipro, it can mimic herxing and if not stopped cause permanent damage to the CNS and tendon rupture. I have CNS pain with all herxing, how would I know when to stop, I think this LLMD is irresponsible in prescribing an abx like this with identical symptoms there is more, read all the way down (link below) and see if any of you would take it willing after reading this):
WARNING Peripheral Neuropathy: Rare cases of sensory or sensorimotor axonal polyneuropathy affecting small and/or large axons resulting in paresthesias, hypoesthesias, dysesthesias and weakness have been reported in patients receiving quinolones, including Ciprofloxacin. Ciprofloxacin should be discontinued if the patient experiences symptoms of neuropathy including pain, burning, tingling, numbness, and/or weakness, or is found to have deficits in light touch, pain, temperature, position sense, vibratory sensation, and/or motor strength in order to prevent the development of an irreversible condition See: http://www.fqresearch.org/ciprofloxacin.htm
I must have read your posts wrong, as I got "Prednisone" out of it. It's my "Lyme brain." (That's also a good excuse!)
But cortisone shots ... hmmmmmm. I had a couple in my knee decades ago. I take hydrocortisone now, but in a tiny quantity (2 pills, 5 mg each) for pooped adrenals. It is very much helping me.
You mentioned not being able to carry on a conversation (and I hope I got that right.) Oh my! Tell me about it. Sometimes I'm responding to something that isn't the topic of conversation anymore. Where I live, people sometimes look at me like I'm "funny."
Oh well, I am "funny."
But I'm getting better. I've gone leaps and bounds, from what I was.
I'm sorry your ILADS doc ignores your signs and symptoms. With docs in general, I've found that to be an indicator of what's to come. It's stick-figure medicine vs. flesh-and-blood individual patient treatment.
Stick-figure medicine is not rational.
DO YOU HEAR ME, DOCTORS? IT'S NOT RATIONAL!
I have no experience with Cipro. But you found a source that says, "irreversable condition." Scary.
Through the frustration, it'll work out. Hang in there. I had constant, severe head pain in my right cerebellum (behind my ear) for a few years. I still have it, although it's not as severe, thank goodness.
lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Hi Daise,
Yes unfortunately they believe the cortisone shots were given very near the bite, because the pain was localized to the shoulder blade, then the shots just set the bacteria free along with 4 dormant viruses - ripped through me. Giving cortisone (except in low doses like you have) with any bacterial infection can be deadly. Obviously, an immunosuppressant was not what I needed when I had a 4 serious bacterial and 4 viral infections, the rapid dissemination was unbelievable. I didn't know a body could handle something like the train wreck that was and still survive!
Yes, on Bicillin, I first felt (brain-wise) like I had ADD. I'd be in the middle of 5 things and not know what I was doing. I'd try to talk on the phone, my conversation was broken into segments of nonsensical words that probably had most people listening wondering if I was on street drugs.
The nerve pain started after the 4th shot and then symptoms I haven't had in many months returned full force. I knew then my bacterial load must be very high and very deep, unreachable by the orals I was on.
I am glad you are doing better. I have pain everywhere, but 2 in particular that drive me crazy is one non stop pain in the back of my head (about where the spine meets the skull area) and deep ear pain. Both were gone until I started Bicillin and it was fun going down memory lane of all the pain - not!
You said it right...stick figure medicine, never have I heard that term, but it nails it.
I spoke with another girl who has seen him recently, she too admitted he didn't really look like he was listening (he doesn't) and just nodded the whole time (like he had heard the story a million times) and then prescribed based on the tests! Amazing!
I normally would not worry about Cipro - it has proven to be a great drug pre-lyme for me. But having all the symptoms it can create already, I just don't think that is wise choice. This same LLMD prescribed Cipro for a woman and she called and told them she believed she was having side effects, he said she was herxing. Turns out she was having side effects - not herxing. Scary.
I can't imagine Cipro being the best choice for Ehrlichia anyway. I could try Rifampin, but everyone here makes it sound like a nightmare drug, so Doxy is really my only choice I believe. If he listened to me, he might agree.
I really believe this big named LLMD would be the answer, instead he couldn't tell you my symptoms after 15 months of seeing him. He could however tell you my CD57 and the Igenex results.
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Lymebytes, sorry!! To clarify, the term irrervsible wasn't from __your__ site you gave for info- I did a search and read for a while on a few sites trying to get a real feel for the information. And clearly I get garbled in translation because it said it is NOT irreversible if you stop it tends to stop UNLESS you continue once it is clearly going on!!!!!!!!!! Best wishes, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
Lymebytes, Im with you on this one too! I have been in treatment over a year now and nothing really works1 My llmd brings it up and always says we'll talk about it next time. I feel like all we do is keep tryng all these alternative treatments that never seem to help me one way or the other.
I know I will get people mad at me for saying this, but its all about money I think. I feel like this treatment or that supplement is always being pushed on me before another is even given a chance. Sometimes it being my fault since it takes me so long to take anything the way Im supposed to because of fear of side effects but still.
I know mine and yours story are the same and neither us is better and neither of us has tried IV abx, I hope that changes soon.
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Lymebytes - I saw this posting you wrote:
"Having chronic Lyme more than one year actually re-writes the DNA in the body and incorporates its own! It causes serious immune system breakdown.
It seems like Russian roulette to keep a chronic patient on oral abx! These LLMD's are building resistance to the antibiotics (which we may need if we have a bacterial infection other than LD in the future and they may not work) and they are building a stronger spirochete!"
-----
1. What is your reference for the statement about Lyme rewriting the DNA? I'm not an expert but many things can "rewrite" the DNA. I'm not sure what this means in terms of treatment.
2. If Lyme can be resistant (or build resistance to abx for future use) to oral antibiotics don't you think it would be the same or worse for IV abx? As I mentioned, I'm no expert but I don't see how IVs are better than oral abx. Is there any actual data or studies that compare both methods? From my understanding, Lyme lives in between the cells it's not necessarily only in the blood vessels. Doing something as extreme as getting a PICC line is not always necessary. I think I would prefer to do everything possible to avoid that. I don't think the IV approach always works, either.
Please let me know about this. I'm curious. Are IV antibiotics really better & how do we know?
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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daise
Unregistered
posted
Hi Sparkle7,
IV Antibiotics, for example Rocephen or LA Bicillin IM shots, cross the blood / brain barrier. That's why they are precious for Chronic Lyme patients (neuroborreliosis.)
I loved Rocephen for what it did for me and now I feel lucky to also get LA Bicillin IM shots. Plus other antibiotics.
The Lyme spirochete is shaped to tunnel through muscle--that's how it moves through the body. It doesn't hang-out in blood vessels much.
And the spirochete (it has a cell wall) can morph--change--into two other forms that do not have cell walls: The bodys immune system has a hard time attacking the forms that don't have cell walls--because our antibodies target on cell walls.
The Lyme beast germ can morph back and forth. The antibiotics are chosen to try to deal with that--but also taking into account the health of the individual patient (Immune system and GI tract) plus the individuals particular signs and symptoms.
And it can hide in cells--for years. That's where the Lyme germs without cell walls hide. For example, the cystic form. It gets in a cell and then pulls your cell wall over itself, to hide like a wolf in sheeps clothing.
Lyme is a smart bacteria. It's scary.
I got a huge bulls-eye rash and no symptoms. 9 years later--BAM! It proliferated: I got big-time signs and symptoms all at once.
That's why "early Lyme," not properly diagnosed and not properly treated, turns into a different disease that's hard to treat: "chronic Lyme disease": neuroborreliosis, a brain infection of the Lyme pathogen.
If antibiotics clear it from the body, but not much from the brain, then it could/will proliferate again.
Have you been to www.ILADS.org? I suggest, "Treatment Guidelines" and then print-out Dr. Burrascano's 33 pages of hints and also the ILADS Guidelines.
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Thanks Daise. I'm just not convinced that IV abx are the answer. It's alot to study. I had Lyme for 10 years before I found out I was ill with Lyme. The doctors said I had Fibromyalgia. I've been on oral abx since Februrary. I've read about the pleomorphic tendencies. Someone put up a post a while back stating that Dr. B from ILADS said that raising the body temperature (through exercise) can cure Lyme. If this is true, abx may not be necessary. Sometimes, the more extreme cures are not necessarily better than the simple ones. PICC lines seem very invasive to me. I don't have health insurance, so I'd prefer to try the most basic treatments. Even if I did have the resources, I'd prefer not to get a PICC line.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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daise
Unregistered
posted
Hi Sparkle7,
People could easily get the wrong impression on this board. Please know that some people are trying to sell something--only. Some are fanatical.
After getting extensive antibiotics and considering co-infetions, some are not well and then they may seek alternatives. And some of these help.
But there is also a cesspool of alternatives that do not work. These are the result of modern day snakeoil salespeople--who invade the Internet at many sites. They know we Lyme patients are vulnerable.
Some of these schemes can make you WORSE!
You've had Lyme ten years. That's serious. Almost no orals cross the blood/brain barrier to any degree. That's why IV's (i.e. IV Rocephen, IV doxy) and LA Bicillin IM shots are important
May I make suggestions? www.ILADS.org, under "Treatment Guidelines" copy Dr. Burrascano's 33 pages of hints for 2005. Above that are the ILADS guidelines. Also, a book you may find at libraries: Coping with Lyme Disease, 2004, by Denise Lang.
Do you have Medicaid or Medicare? Have you applied?
As attested by many, it's the ILADS body of knowledge and their experience that works for most! It's important to have one foot in conventional treatment and one foot in alternative.
Please realize that there is the extreme of conventional medicine--IDSA. And there is the extreme of alternative modern snake oil. Both are a lot alike.
An actual LLMD knows what to do for each individual.
posted
Hi Lymebytes. I think I'm a bit similar to you. No IV for me either. According to my LLMD, there is recent research that shows that a sustained course of doxy at the proper dosage (400 - 600mgs) can be just as effective as IV rocephin in some cases. I believe this is relatively new research. Ask your doc for the back-up info on this, I will do the same. I am 100% positive that my doc isn't just looking to collect fees for my office visits, while not really helping me to become well.
I am trying to avoid IV and its risks at all cost. Even WITH 2 significant brain lesions. I'll do what I have to do, but for now (10 mos in) I'm putting IV off. It would definitely be positive to understand the EXACT, your-case specific, reasons why your doc is holding off, though. And check out that doxy data.
And, please don't yell at me, Lymenet!!
otm
Posts: 314 | From east coast | Registered: Oct 2007
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What I am hearing is that you are at the end of your rope. Suicide is just as deadly as a clot... and people often survive clots!.... Not so much with serious suicide attempts.
You need to talk to your doctor and tell him/her exactly where you are at. Then, if you decide on IV therapy....... INSIST upon a - Groshong Catheter-. Yah, they cost more. But you MIGHT get a blood clot with a PICC.... if not, pretty much guarenteed you'll eventually get "line sepsis". Then they'll pull it and interupt therapy... then put one in the other arm.... then when that one gives you infection, say, "Well, you failed antibiotic therapy."
These risk are very much decreased with a Groshong... no dressings... easy care.. does not interphere with arm movement. And will have a far far longer catheter life. Lyme IV treatment will be long term. I know you know that; but just a reminder.
I left my first ILADS MD appointment with a sinking feeling that ILADS was just a moniker to attract patients for him! I am seeing someone else. Again have a frank talk with your doctor then make some decisions you can LIVE with.
Take Care
Posts: 70 | From AZ | Registered: Sep 2007
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posted
Hi all, Sorry, I haven't mastered ``quoting'' yet.
What is the reference for the idea, above in this thread, that no orals cross the blood-brain barrier, but certain IV's do?
When I first realized we had Lyme, I pulled the journal articles on the most used antibiotics for Lyme, and found that oral Doxy gets into the brain pretty well, if the concentration is high enough. The reference is somewhere in my piles of papers, if I find it I'll post it. I think some other Abx do too, can't remember which right now.
That's why we take twice the dose that is used for more garden-variety infections. That is, the regular docs want to prescribe 200 mg/day, but I searched until I found a doctor who would prescribe 400 mg/day, to get it into the brain.
Then we found our LLMD, and she thought that 400 mg/day oral doxy was a good start. She thought it would take us (my husband and me) a couple of years to get better, since we've both had it a long time, and have neuro symptoms. We took the doxy for 5 months, and are now on Biaxin, plaquenil, and pulsing with flagyl. Also Nystatin to prevent colon yeast overgrowth. I got quite a bit better on the doxy, whereas my husband seems to be responding more to the Biaxin/plaquenil/flagyl.
I have the impression that the reasons for IV would be:
an immediately life-threatening infection (it takes a few days for orals to build up to the desired level), or
an inability to take high-dose orals due to stomach issues, or
the desire to use an antibiotic that can't be given orally.
That said, I am avoiding IVs primarily because I'm pretty sure this will take a long time no matter what the administration route. I would do IV for a month if I thought it would cure me, but it seems to me that the duration of treatment is more important than the route (that is, oral vs. IV). Plus, of course, rotating the right drugs throughout the treatment. I wouldn't want to do long term IV except as a last resort, because the longer you do it, the greater the chance of serious trouble, just due to having a conduit from the world to your blood.
I think the idea that IVs are better or stronger than orals, may be true in some specific situations, but is not true in general. Plus, I think the use of IVs, when not essential, is one of the factors that makes long-term Abx treatment for Lyme so controversial. It is true it is risky, and that it is not even close to a ``sure cure''. I wish the ducks would make the distinction between long-term IV and long-term orals; they always say how dangerous long-term Abx are, but then you find out they're using data from IVs gone bad to make that claim.
Ask your doctor why he prefers orals in your case, could be that he just doesn't think IV is any more likely to help. If that's so, he (and I) might be wrong, but there are good reasons for thinking that.
I'm sorry you're so sick! I agree that an ID guy would probably do IV if you can convince him that you have neuro-lyme. If you have blazing test results, that would help.
And, sorry this is so long, I don't have time to make it short.
Best wishes for health, Lorima
Posts: 74 | From MA | Registered: May 2007
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