Aa
Should I Begin IV Antibiotics?
LLMD wants me to start IV antibiotics, but I am uncertain. Got MS diagnosis (numerous white matter brain lesions) ~13 years ago, because no infectious agent was found. Decided to see LLMD after much research on what could be my problem (not usual MS course), and with continuing cognitive symptoms and great fatigue.
Igenex WB results below:
IGM
18 -
23-25 IND
28 -
30 -
31 -
34 -
39 IND
41 +
45 -
58 -
66 +
83-93 IND
IGG
18 -
23-25 -
28 -
30 -
31 -
34 -
39 IND
41 ++
45 -
58 +
66 -
83-93 -
So my question is, should I treat with IV antibiotics, knowing there are significant risks, ask to try oral antibiotics, or try an herbal protocol (or do nothing)?
Any advice would be appreciated, especially would like to hear about any success stories.
Igenex WB results below:
IGM
18 -
23-25 IND
28 -
30 -
31 -
34 -
39 IND
41 +
45 -
58 -
66 +
83-93 IND
IGG
18 -
23-25 -
28 -
30 -
31 -
34 -
39 IND
41 ++
45 -
58 +
66 -
83-93 -
So my question is, should I treat with IV antibiotics, knowing there are significant risks, ask to try oral antibiotics, or try an herbal protocol (or do nothing)?
Any advice would be appreciated, especially would like to hear about any success stories.
Your doctor's comments about IGeneX are primarily a repetition of negative remarks from health officials, researchers, and doctors who don't want to admit they're wrong about the CDC two tier testing protocol.
IGeneX uses 2 strains (most labs use just 1) of Borrelia in their Western Blot to ensure all antibodies covered, and so they are more likely to produce an accurate positive result in a Lyme infected patient. They also use a more generous criteria. They'll call you positive with only 2 Lyme specific bands, whereas the CDC wants 5 on the IgG. (No one can explain how someone can have FOUR Lyme specific antibodies without having Lyme, but that's what the CDC says.)
The only way for Lyme deniers to explain all the positives coming from IGenex in people who tested negative elsewhere is to suggest that IGenex is somehow incompetent or crooked. Otherwise, they'd have to admit the CDC testing protocol is flawed. Interestingly enough, IGeneX has passed all required audits by the CDC and New York State, which is even more stringent. It's incomprehensible that the CDC would allow an incompetent or crooked lab to stay in business for many years.
Interesting that your doc said the IGeneX negatives are definitive. I doubt if any of the doctors that have criticized IGeneX have any idea of what they're talking about. They're just repeating gossip.
Over time, Lyme spirochetes move out of the blood and into the tissues and immune protected places like the brain and joints and certain skin cells. When the immune system doesn't see it in the blood anymore, it ratches down antibody production. As the patient gets sicker, antibodies are declining. Lyme doesn't follow the theory that quantity of antibodies defines severity of disease. It turns that theory on its' head.
My doctor's PA said their sickest patients sometimes are IGeneX negative. But it sounds like your doc sees signs of Lyme in addition to symptoms, so he's willing to treat. Did he talk about retesting after some antibiotics?
I, too, wanted a definitive test to eliminate all my doubts. But there isn't one. It's a clinical diagnosis. I personally think it's good that you're trying orals.
They used mostly early stage, New England based patients with a new infection and a bulls eye rash that they could biopsy in the study to produce the test interpretation. (Bulls eye rashes are conclusive for Lyme, but only a quarter of patients recall one.) So knowing that antibodies change and decline over time and can be different with different strains and species of bacteria, why would they assume such a test would work on a late stage patient from Michigan, or Texas, or California? There are different strains and even species all over the place, not to mention different immune systems.
For peace of mind, you might test again after a month or two of the Minocycline. If your 23 and 39 bands come up just a little bit into the '+' category, you'd even be CDC positive on the IgM.
IGeneX uses 2 strains (most labs use just 1) of Borrelia in their Western Blot to ensure all antibodies covered, and so they are more likely to produce an accurate positive result in a Lyme infected patient. They also use a more generous criteria. They'll call you positive with only 2 Lyme specific bands, whereas the CDC wants 5 on the IgG. (No one can explain how someone can have FOUR Lyme specific antibodies without having Lyme, but that's what the CDC says.)
The only way for Lyme deniers to explain all the positives coming from IGenex in people who tested negative elsewhere is to suggest that IGenex is somehow incompetent or crooked. Otherwise, they'd have to admit the CDC testing protocol is flawed. Interestingly enough, IGeneX has passed all required audits by the CDC and New York State, which is even more stringent. It's incomprehensible that the CDC would allow an incompetent or crooked lab to stay in business for many years.
Interesting that your doc said the IGeneX negatives are definitive. I doubt if any of the doctors that have criticized IGeneX have any idea of what they're talking about. They're just repeating gossip.
Over time, Lyme spirochetes move out of the blood and into the tissues and immune protected places like the brain and joints and certain skin cells. When the immune system doesn't see it in the blood anymore, it ratches down antibody production. As the patient gets sicker, antibodies are declining. Lyme doesn't follow the theory that quantity of antibodies defines severity of disease. It turns that theory on its' head.
My doctor's PA said their sickest patients sometimes are IGeneX negative. But it sounds like your doc sees signs of Lyme in addition to symptoms, so he's willing to treat. Did he talk about retesting after some antibiotics?
I, too, wanted a definitive test to eliminate all my doubts. But there isn't one. It's a clinical diagnosis. I personally think it's good that you're trying orals.
They used mostly early stage, New England based patients with a new infection and a bulls eye rash that they could biopsy in the study to produce the test interpretation. (Bulls eye rashes are conclusive for Lyme, but only a quarter of patients recall one.) So knowing that antibodies change and decline over time and can be different with different strains and species of bacteria, why would they assume such a test would work on a late stage patient from Michigan, or Texas, or California? There are different strains and even species all over the place, not to mention different immune systems.
For peace of mind, you might test again after a month or two of the Minocycline. If your 23 and 39 bands come up just a little bit into the '+' category, you'd even be CDC positive on the IgM.
Without anything but my general view of Lyme etc. over the last ~7 years of having Lyme and getting rid of it, I suspect there are people whose infections and immune system do well with straight antibiotic treatment, but others who do not because of things that science and medicine just haven't yet figured out about the nooks and crannies of the immune system and how it interacts with different infections that are all busy interacting with each other too (aka co-infections).
I'd suggest you not wait too long for the perfect answer ... the longer you wait, the more entrenched the bugz are and the more damage they can do. The trick in my experience is having a wise doc who re-evaluates the situation periodically to pick up new data points that weren't seen or weren't obvious before. Lyme etc. are so complex that there is much going on that is hidden. So don't wait so long for the perfect answer and perfect treatment, because time is passing and whatever you have likely won't pack up and go to Florida for a little vacation.
It is probably true that antibiotics have been overused and misused over the decades, but when used carefully and appropriately, they are literally lifesavers, and also savers of what Lyme patients used to called their 'daily lives'. And keep in mind that Lyme itself suppresses the immune system, so the longer you wait, perhaps the more damage that is done overall.
What's the saying: don't let perfection be the enemy of the merely good.
And ... if you weren't worked up for co-infections that often come with Lyme, that's an avenue to explore asap.
I'd suggest you not wait too long for the perfect answer ... the longer you wait, the more entrenched the bugz are and the more damage they can do. The trick in my experience is having a wise doc who re-evaluates the situation periodically to pick up new data points that weren't seen or weren't obvious before. Lyme etc. are so complex that there is much going on that is hidden. So don't wait so long for the perfect answer and perfect treatment, because time is passing and whatever you have likely won't pack up and go to Florida for a little vacation.
It is probably true that antibiotics have been overused and misused over the decades, but when used carefully and appropriately, they are literally lifesavers, and also savers of what Lyme patients used to called their 'daily lives'. And keep in mind that Lyme itself suppresses the immune system, so the longer you wait, perhaps the more damage that is done overall.
What's the saying: don't let perfection be the enemy of the merely good.
And ... if you weren't worked up for co-infections that often come with Lyme, that's an avenue to explore asap.
Thanks for the advice - I think I will seek a 2nd opinion (but continue oral antibiotics in the meantime).
I also heard about a new test coming out that is supposed to be more definite (at least that's what they are claiming :)) - Nanotrap is what it's called.
I'd like to have more warm-fuzzy feeling about dx before doing anything too drastic. Not to mention I've read a lot of stories of folks who have done years of antibiotic therapy without much help - most seem to end up switching to alternatives (Cowden, etc.), but even those don't seem to have great success.
I also heard about a new test coming out that is supposed to be more definite (at least that's what they are claiming :)) - Nanotrap is what it's called.
I'd like to have more warm-fuzzy feeling about dx before doing anything too drastic. Not to mention I've read a lot of stories of folks who have done years of antibiotic therapy without much help - most seem to end up switching to alternatives (Cowden, etc.), but even those don't seem to have great success.
I hear you. I think 'Lyme' is in the dictionary under the definition of 'murky'. Someday all this will be clear, but it sure isn't now, so no wonder the medical profession is in such disarray.
Sounds like your doc is being cautious by treating, and fwiw, I would take the treatment just in case -- since untreated Lyme wouldn't just pack up and go home to mama.
Each doc is different in their views of IgeneX, but I don't recall reading that they have a lot of false positives .... that may indicate your doc is on the skeptical side about Lyme over all. I just searched online for -- michigan lyme disease -- and found some interesting links, including one for a Michigan Lyme Disease Association with a website at mlda [dot] org. If you want a second opinion, you might be able to find a doc through that organization. ILADS [dot] org can also give names of member docs.
Lyme is such a squirrelly area that it's no wonder the docs are in disarray. So consider getting a second opinion, just to ease your mind if nothing else. That's worth a lot.
You could also post a new thread here something like 'need LLMD near Grand Rapids MI' and see if anyone has a recommendation.
I got lucky with the first LLMD I saw (after 20 'regular' docs), but sometimes it takes a few tries. Let us know how we can help, okay?
Sounds like your doc is being cautious by treating, and fwiw, I would take the treatment just in case -- since untreated Lyme wouldn't just pack up and go home to mama.
Each doc is different in their views of IgeneX, but I don't recall reading that they have a lot of false positives .... that may indicate your doc is on the skeptical side about Lyme over all. I just searched online for -- michigan lyme disease -- and found some interesting links, including one for a Michigan Lyme Disease Association with a website at mlda [dot] org. If you want a second opinion, you might be able to find a doc through that organization. ILADS [dot] org can also give names of member docs.
Lyme is such a squirrelly area that it's no wonder the docs are in disarray. So consider getting a second opinion, just to ease your mind if nothing else. That's worth a lot.
You could also post a new thread here something like 'need LLMD near Grand Rapids MI' and see if anyone has a recommendation.
I got lucky with the first LLMD I saw (after 20 'regular' docs), but sometimes it takes a few tries. Let us know how we can help, okay?
Well, my report says negative for both Igenex and CDC IGM/IGG - that tends to make me think maybe I don't have Lyme disease. I've read a lot of conflicting information about accuracy of lab tests in diagnosing Lyme, false positives and false negatives.
What's "funny" is that my dr said Igenex has quite a few false positives, but not false negatives, if they say negative, then you can pretty much forget about Lyme. But... now he is treating me with abx despite a "negative" Igenex blot. It's all very confusing (and somewhat concerning).
What's "funny" is that my dr said Igenex has quite a few false positives, but not false negatives, if they say negative, then you can pretty much forget about Lyme. But... now he is treating me with abx despite a "negative" Igenex blot. It's all very confusing (and somewhat concerning).
You say: "Since my Igenex results are technically negative, I question whether IV abx are appropriate, question whether the Lyme dx is even appropriate."
'Technically negative'? Is that like being a little bit pregnant?
I take the opposite position: if I had evidence of Lyme infection *and* felt lousy, I would get treated. Why not? What more evidence and how much worse do you have to feel before you decide it's worth dealing with?
Lyme can cause depression, among other things, so maybe it's your gloomy side talking. But rethink that position, okay?
'Technically negative'? Is that like being a little bit pregnant?
I take the opposite position: if I had evidence of Lyme infection *and* felt lousy, I would get treated. Why not? What more evidence and how much worse do you have to feel before you decide it's worth dealing with?
Lyme can cause depression, among other things, so maybe it's your gloomy side talking. But rethink that position, okay?
Since my Igenex results are technically negative, I question whether IV abx are appropriate, question whether the Lyme dx is even appropriate.
So, I've decided to see how I do on oral abx (Minocycline) for a couple of months - if I notice any improvement, I may consider something stronger, although I've read that Mino penetrates tissues as well as IV.
I've been relatively stable over the past 10 years, however with constant fatigue and brain fog/derealization. I don't want to make my condition worse, or open myself up to other problems related to IV abx, not to mention my dr is miles away and not easily reachable if I were to have problems.
So, I've decided to see how I do on oral abx (Minocycline) for a couple of months - if I notice any improvement, I may consider something stronger, although I've read that Mino penetrates tissues as well as IV.
I've been relatively stable over the past 10 years, however with constant fatigue and brain fog/derealization. I don't want to make my condition worse, or open myself up to other problems related to IV abx, not to mention my dr is miles away and not easily reachable if I were to have problems.
I also have Lyme that mimicked MS. I had about 20 little white brain lesions on an MRI and a number of symptoms consistent with MS, although my neuro wasn't entirely convinced. He said if I did have MS, it was "atypical."
For one thing, my tingling wasn't consistent with MS tingling. It came and went and moved around. In hindsight, I believe the tingling was caused by my Bartonella coinfection, not Lyme. (There's a case study in PubMed where someone biopsied the brain lesions believed to be caused by Lyme and discovered living Bartonella bacteria in them. Maybe it's a combo of Lyme and Bart that results in those brain lesions. And maybe that explains why not all neuro Lyme patients have brain lesions. Be sure to ask your LLMD about Bartonella.)
Dr. Burrascano, a pioneer in figuring out how to treat Lyme, eventually noticed that patients with lots of neuro symptoms usually had Bartonella as well. Many of the symptoms overlap, so Bartonella isn't always apparent. Thank goodness I tested positive for it at IGeneX, or we would have missed it. Lots of people test false negative for it.
My neuro ran Lyme tests on my spinal fluid and blood, but both screening tests were negative, so no Western Blot was run. I've never had joint or muscle pain or arthritis, but I've had lots of organ involvement and a stubborn infestation in my ribs. I've since learned that the spinal fluid test is meaningless if it's negative. The spirochetes just don't hang out there. But it's highly definitive if it's positive. I was told by misinformed doctors I didn't have Lyme because of those tests. That still angers me.
My neuro sent me to a major university nearby to see a MS specialist. I got the full workup for MS and she concluded I didn't have it, and apologized for not knowing having a diagnosis for me. She was about to send me away with instructions to return in a year to see if anything changed. I'd gotten my Lyme diagnosis by that point and so I told her I was confident that it was correct. She was kind, but didn't seem to believe me given my CDC negative tests (which were IGeneX positive.) Amazing how they're enslaved to those very unscientific tests! I think she was grateful I wasn't upset with her.
People who've had Lyme for a long time are more likely to test CDC negative because the spirochetes move out of the blood into tissues, areas with low blood flow, and immune protected areas like the nervous system. As a result, the immune system doesn't see it much anymore and antibody production drops.
This is scientifically known, not just a theory by LLMDs. My doctor's P.A. told me that it's their sickest and most chronic patients who test negative even at IGeneX. Many of them produce greater immune responses and even CDC positive tests well into their treatment, after antibiotics have killed off some of the bugs and the immune system has perked up.
Lyme also suppresses the immune system. (So does Bartonella.) You've got very low level responses in a number of highly Lyme indicative antibodies, though, so I'm not surprised your LLMD is making a clinical diagnosis and encouraging you to start treatment.
Before my diagnosis when I was fairly sick, an immunologist ran a basic IgG/IgM level blood test on me and it on the low end of normal. He called it "stone cold normal" and felt it excluded an infection as the source of my symptoms. A blood test for allergies turned up nothing, despite lifelong allergies to certain common pollens. That allergy season I'd noticed was my best ever. I later figured out it was because my immune system was suppressed, and barely fighting back against my tick borne diseases. Now that I'm better, my allergies are back!
Even the IDSA and CDC say to treat neurologic Lyme (which is what you have if you were misdiagnosed with MS) with IV antibiotics. The orals just don't sufficiently penetrate the nervous system to get to it. If you've taken immune suppressants (steroids) or modulators, then your infection will be tougher to treat and that's further argument that you need the IVs.
I'm just past the 4 month mark on IV antibiotics and I can finally say I'm feeling better. I still have a long way to go, and it's been a long haul so far, but I'm confident that if I don't give up, I will get to a place of good functionality.
(FYI... I did nearly a year of Bicillin shots and anti-Bart meds, which brought great improvement in neuro symptoms, but then I plateaued. Then, we started treating Babesia, which was awful. At that time, oral Augmentin only seemed to keep Lyme from worsening. Due to GI distress, I asked to switch to something else. I took Ceftin, which turned out to be useless for me. Within a month, Lyme symptoms were worsening, and within another month, it was clear Bartonella was back with a vengeance, a year after we thought it was gone. I went on Rocephin shots with some improvement (took 6 weeks to notice) for a few months before plateauing. I'm currently on IV Zithromax (for Lyme and Babesia w/ Mepron) and IV Ampicillin for Lyme and I'm finally feeling more functional. (I'm on herbals for Bart.) )
I am a complicated case because of 3 different and stubborn infections acquired overseas (different species?), taking insufficient antibiotics in the beginning, several years of infection before accurate diagnosis, steroids, and a flu vaccine (never again!) while quite sick, I don't think I'll be cured until someone comes up with a way to dissolve biofilms and kill everything inside them. That's probably 5-10 years away, given how long it's taken the researchers to pay attention to this subject. But I am very encouraged by stories of people who've recovered after long term antibiotics and I fully expect to be one of them.
While I'm not the "success" story you're looking for (at least not yet), I would go for the IVs for your entrenched neuro Lyme if I were you.
(NOTE: I am not a doctor. My opinion is based on my own experience and much reading. You have to make your own decision with your doctor.)
In cases of long term neuro Lyme, orals have limited capability and it just seems unlikely to me that you'll see significant improvement with them. Just know that even with IVs, it's going to take a while.
I'm so glad you got to a LLMD! I encourage you to have hope. MS is a degenerative disease with no cure. With Lyme and proper treatment, you can see significant improvement.
If you do go on IVs, I encourage you to tell your doc if you're just miserable. My doc started pulsing my treatment because my body just got overwhelmed with die-off. I am handling my new pulsed regimen much better than the previous, more aggressive approach. Also, IV glutathione has been awesome. I feel noticeably better within minutes of a dose. It's very easy to do yourself at home when you have a PICC line. I wish I had started it sooner. My insurance even covers some of it.
Hang in there! Don't be afraid of treatment. Consider it a marathon, not a sprint.
For one thing, my tingling wasn't consistent with MS tingling. It came and went and moved around. In hindsight, I believe the tingling was caused by my Bartonella coinfection, not Lyme. (There's a case study in PubMed where someone biopsied the brain lesions believed to be caused by Lyme and discovered living Bartonella bacteria in them. Maybe it's a combo of Lyme and Bart that results in those brain lesions. And maybe that explains why not all neuro Lyme patients have brain lesions. Be sure to ask your LLMD about Bartonella.)
Dr. Burrascano, a pioneer in figuring out how to treat Lyme, eventually noticed that patients with lots of neuro symptoms usually had Bartonella as well. Many of the symptoms overlap, so Bartonella isn't always apparent. Thank goodness I tested positive for it at IGeneX, or we would have missed it. Lots of people test false negative for it.
My neuro ran Lyme tests on my spinal fluid and blood, but both screening tests were negative, so no Western Blot was run. I've never had joint or muscle pain or arthritis, but I've had lots of organ involvement and a stubborn infestation in my ribs. I've since learned that the spinal fluid test is meaningless if it's negative. The spirochetes just don't hang out there. But it's highly definitive if it's positive. I was told by misinformed doctors I didn't have Lyme because of those tests. That still angers me.
My neuro sent me to a major university nearby to see a MS specialist. I got the full workup for MS and she concluded I didn't have it, and apologized for not knowing having a diagnosis for me. She was about to send me away with instructions to return in a year to see if anything changed. I'd gotten my Lyme diagnosis by that point and so I told her I was confident that it was correct. She was kind, but didn't seem to believe me given my CDC negative tests (which were IGeneX positive.) Amazing how they're enslaved to those very unscientific tests! I think she was grateful I wasn't upset with her.
People who've had Lyme for a long time are more likely to test CDC negative because the spirochetes move out of the blood into tissues, areas with low blood flow, and immune protected areas like the nervous system. As a result, the immune system doesn't see it much anymore and antibody production drops.
This is scientifically known, not just a theory by LLMDs. My doctor's P.A. told me that it's their sickest and most chronic patients who test negative even at IGeneX. Many of them produce greater immune responses and even CDC positive tests well into their treatment, after antibiotics have killed off some of the bugs and the immune system has perked up.
Lyme also suppresses the immune system. (So does Bartonella.) You've got very low level responses in a number of highly Lyme indicative antibodies, though, so I'm not surprised your LLMD is making a clinical diagnosis and encouraging you to start treatment.
Before my diagnosis when I was fairly sick, an immunologist ran a basic IgG/IgM level blood test on me and it on the low end of normal. He called it "stone cold normal" and felt it excluded an infection as the source of my symptoms. A blood test for allergies turned up nothing, despite lifelong allergies to certain common pollens. That allergy season I'd noticed was my best ever. I later figured out it was because my immune system was suppressed, and barely fighting back against my tick borne diseases. Now that I'm better, my allergies are back!
Even the IDSA and CDC say to treat neurologic Lyme (which is what you have if you were misdiagnosed with MS) with IV antibiotics. The orals just don't sufficiently penetrate the nervous system to get to it. If you've taken immune suppressants (steroids) or modulators, then your infection will be tougher to treat and that's further argument that you need the IVs.
I'm just past the 4 month mark on IV antibiotics and I can finally say I'm feeling better. I still have a long way to go, and it's been a long haul so far, but I'm confident that if I don't give up, I will get to a place of good functionality.
(FYI... I did nearly a year of Bicillin shots and anti-Bart meds, which brought great improvement in neuro symptoms, but then I plateaued. Then, we started treating Babesia, which was awful. At that time, oral Augmentin only seemed to keep Lyme from worsening. Due to GI distress, I asked to switch to something else. I took Ceftin, which turned out to be useless for me. Within a month, Lyme symptoms were worsening, and within another month, it was clear Bartonella was back with a vengeance, a year after we thought it was gone. I went on Rocephin shots with some improvement (took 6 weeks to notice) for a few months before plateauing. I'm currently on IV Zithromax (for Lyme and Babesia w/ Mepron) and IV Ampicillin for Lyme and I'm finally feeling more functional. (I'm on herbals for Bart.) )
I am a complicated case because of 3 different and stubborn infections acquired overseas (different species?), taking insufficient antibiotics in the beginning, several years of infection before accurate diagnosis, steroids, and a flu vaccine (never again!) while quite sick, I don't think I'll be cured until someone comes up with a way to dissolve biofilms and kill everything inside them. That's probably 5-10 years away, given how long it's taken the researchers to pay attention to this subject. But I am very encouraged by stories of people who've recovered after long term antibiotics and I fully expect to be one of them.
While I'm not the "success" story you're looking for (at least not yet), I would go for the IVs for your entrenched neuro Lyme if I were you.
(NOTE: I am not a doctor. My opinion is based on my own experience and much reading. You have to make your own decision with your doctor.)
In cases of long term neuro Lyme, orals have limited capability and it just seems unlikely to me that you'll see significant improvement with them. Just know that even with IVs, it's going to take a while.
I'm so glad you got to a LLMD! I encourage you to have hope. MS is a degenerative disease with no cure. With Lyme and proper treatment, you can see significant improvement.
If you do go on IVs, I encourage you to tell your doc if you're just miserable. My doc started pulsing my treatment because my body just got overwhelmed with die-off. I am handling my new pulsed regimen much better than the previous, more aggressive approach. Also, IV glutathione has been awesome. I feel noticeably better within minutes of a dose. It's very easy to do yourself at home when you have a PICC line. I wish I had started it sooner. My insurance even covers some of it.
Hang in there! Don't be afraid of treatment. Consider it a marathon, not a sprint.
I got the MS dx too. I spent 2 years on orals and did not get better so am on my 5 th month of the Cowden protocol and feeling great. Took a 30 minute walk this morning after 2 years in bed. Go for what you feel comfy with.
Wow, what a revelation to find out that it's Lyme and not MS. A "big sloppy kiss" is definitely in order, lol Jackie!
Jim Wilson, who runs the Canadian Lyme Disease foundation would like to see everyone with MS tested for Lyme. There is lots of scientific evidence indicating that they are one and the same. I'm with Jackie - I'd give the IV a chance if your LLMD is willing to try that route. I see my LLMD out of country in August for confirmation of diagnosis of Lyme. I wish I had the option of going IV as it's in my joints and nervous system, but don't know how that would work as docs here won't treat longterm for Lyme.
Jim Wilson, who runs the Canadian Lyme Disease foundation would like to see everyone with MS tested for Lyme. There is lots of scientific evidence indicating that they are one and the same. I'm with Jackie - I'd give the IV a chance if your LLMD is willing to try that route. I see my LLMD out of country in August for confirmation of diagnosis of Lyme. I wish I had the option of going IV as it's in my joints and nervous system, but don't know how that would work as docs here won't treat longterm for Lyme.
I did oral abx for 5 months but kept getting sicker and sicker. I started IV's in my LLND office (no picc line) and within a few weeks I turned the corner. I'm not healed yet but am so glad I started IV's. Keep us posted and good luck!
Congratulations! Lyme is treatable in a way that MS is not, to my understanding, so give your doc a big sloppy kiss for making the diagnosis!
I can, however, appreciate that it might be difficult to enter the strange, unknown territory of Lyme, compared to having had a settled diagnosis for so long.
Have you talked to your doc about your hesitancy about IV abx? If he is not aware about your concerns, then I would make an appointment for the specific purpose of expressing your reluctance re IV treatment. The doc should have a rationale for why IV as opposed to oral abx.
I'm not medically trained, but my guess would be that the doc sees your infection so entrenched that it may take IV meds to penetrate all the little nooks and crannies the Lyme bacteria may be hiding. Lyme favors areas of low blood flow, where the immune system cannot easily find the bacteria and kill them, and IV does a better job of that than oral abx, to my understanding.
Is there a particular reason you are averse to IV meds? If so, the collective 'we' here would be glad to chime in from our not-medically-trained points of view to give you our take on the topic ... but not from me, because I did only oral meds, having been diagnosed quite soon after infection, before the little beasts could set up long-term residence. If my doc had recommended IV, however, I would give it a try, given how long you have apparently been infected.
On your list of bands, I have (below) noted each one with a positive or indeterminate (IND) ['maybe'] indicator and deleted the ones with a negative indicator:
=======================================
IGM [appears early after initial infection with Lyme]:
23-25 IND -- outer surface protein C (Osp C), specific for Bb
39 IND -- a major protein of Bb flagellin; specific for Bb
41 + -- flagellin of all spirochetes; not specific to Lyme
[but could be Lyme]
66 + -- common in all bacteria
83-93 IND -- specific antigen for Lyme
=======================================
IGG [appears later after initial infection with Lyme]:
39 IND -- a major protein of Bb flagellin; specific for Bb
41 ++ -- flagellin of all spirochetes; not specific to Lyme
[but could be Lyme]
58 + -- unknown but may be a Lyme indicator
=======================================
I'm NOT medically trained, but given that your responses are somewhat positive, I am wondering if you were infected again more recently. Just a thought. That, and/or your immune system is heroic, which it may be. Hurrah!
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But to your question: "should I treat with IV antibiotics, knowing there are significant risks, ask to try oral antibiotics, or try an herbal protocol (or do nothing)?"
If it were I:
-- I would definitely take treatment.
-- I would go straight to the antibiotics and skip the herbals.
-- I would seriously consider IV, given how long your doc believes you to have been infected. Rousting the bacteria after such a long stay may need the big guns, because the bacteria have likely burrowed in for a long winter's night. IV can have issues, but from my reading and hearing others' histories, if one is diligent about hygiene, the risks of infection are minimized and the level of penetration by the medication is significantly increased.
-- But first of all, I would sit down with the doc and ask his/her rational for IV and your concerns about it. Then decide.
=======================================
Others here with different experiences than mine will speak up too, and it will be most interesting to hear back from you what you decide to do and how it all proceeds.
Again, it must be a stunning revelation to find out that the MS you were resigned to living with something quite different. Take care, let us know if we can help, and hurrah!
I can, however, appreciate that it might be difficult to enter the strange, unknown territory of Lyme, compared to having had a settled diagnosis for so long.
Have you talked to your doc about your hesitancy about IV abx? If he is not aware about your concerns, then I would make an appointment for the specific purpose of expressing your reluctance re IV treatment. The doc should have a rationale for why IV as opposed to oral abx.
I'm not medically trained, but my guess would be that the doc sees your infection so entrenched that it may take IV meds to penetrate all the little nooks and crannies the Lyme bacteria may be hiding. Lyme favors areas of low blood flow, where the immune system cannot easily find the bacteria and kill them, and IV does a better job of that than oral abx, to my understanding.
Is there a particular reason you are averse to IV meds? If so, the collective 'we' here would be glad to chime in from our not-medically-trained points of view to give you our take on the topic ... but not from me, because I did only oral meds, having been diagnosed quite soon after infection, before the little beasts could set up long-term residence. If my doc had recommended IV, however, I would give it a try, given how long you have apparently been infected.
On your list of bands, I have (below) noted each one with a positive or indeterminate (IND) ['maybe'] indicator and deleted the ones with a negative indicator:
=======================================
IGM [appears early after initial infection with Lyme]:
23-25 IND -- outer surface protein C (Osp C), specific for Bb
39 IND -- a major protein of Bb flagellin; specific for Bb
41 + -- flagellin of all spirochetes; not specific to Lyme
[but could be Lyme]
66 + -- common in all bacteria
83-93 IND -- specific antigen for Lyme
=======================================
IGG [appears later after initial infection with Lyme]:
39 IND -- a major protein of Bb flagellin; specific for Bb
41 ++ -- flagellin of all spirochetes; not specific to Lyme
[but could be Lyme]
58 + -- unknown but may be a Lyme indicator
=======================================
I'm NOT medically trained, but given that your responses are somewhat positive, I am wondering if you were infected again more recently. Just a thought. That, and/or your immune system is heroic, which it may be. Hurrah!
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But to your question: "should I treat with IV antibiotics, knowing there are significant risks, ask to try oral antibiotics, or try an herbal protocol (or do nothing)?"
If it were I:
-- I would definitely take treatment.
-- I would go straight to the antibiotics and skip the herbals.
-- I would seriously consider IV, given how long your doc believes you to have been infected. Rousting the bacteria after such a long stay may need the big guns, because the bacteria have likely burrowed in for a long winter's night. IV can have issues, but from my reading and hearing others' histories, if one is diligent about hygiene, the risks of infection are minimized and the level of penetration by the medication is significantly increased.
-- But first of all, I would sit down with the doc and ask his/her rational for IV and your concerns about it. Then decide.
=======================================
Others here with different experiences than mine will speak up too, and it will be most interesting to hear back from you what you decide to do and how it all proceeds.
Again, it must be a stunning revelation to find out that the MS you were resigned to living with something quite different. Take care, let us know if we can help, and hurrah!
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