posted
How do I know that I have persitent infection? That is a question that runs through my head every day. How do I know that continuing to take antibiotics is the solution? At what point do I stop?
Does anyone ever wonder if their ongoing symptoms (which are very, very real for me) are related to continued infection, or the resultant autoimmunity of the disease?
My antibody counts have gone down (my western blot is more negative today than when I started antimicrobial therapy). So, how do I explain my persistent symptoms. I have treated aggressively with both IV and oral antibiotics for such a long time.
How do we know that the "post-lyme syndrome" described by the IDSA panel is not what we are facing? If (and I recognize it is a big "if") we have actually fully eradicated the disease, since the western blot is merely an indication of antibodies to Bb and not necessarily reflection of active infection, then our western blot may continue to be positive for months or years.
I have been reading a lot about the role of autoimmunity in lyme disease. Antibodies to Bb can cross react with normal tissues, including neural tissues causing destruction.
We need to kill the bacteria - of that I am certain. How long does this take? I can not possible say. Probably significantly longer than the 28 days the IDSA recommends, but at what point do we say "enough is enough". Nobody knows the answer to that question, unfortunately.
Perhaps, at some point, we need to treat, not the infection (which has been eradicated) but the autoimmune response that Bb induces. Treatment, in that case, would not involve life-long antibiotics, but rather immune modulators and immunosuppresants.
I do not know. That is the scary thing. But, I have already had one autoimmune disease clearly related to Bb (linear scleroderma + morphea) and that was prior to my diagnosis. I am not telling you that you treatment is wrong, I am just questioning my own.
I am strongly considering stopping my antibiotics and taking a steroid like prednisone. Yes, I know there is an INCREDIBLE fear of immunosuppresants on this board. I know Dr. B is completely against them. But, while I have not treated nearly as many patients as he, I am a physician as well. I think I know, at this point, more about lyme disease than most LLMDs (because the majority of them have never experienced what it is like to be a patient with lyme disease).
I agree steroids are bad during an ACTIVE infection. But, if I have treated the active infection with long durations of antibiotics and now I am suffering from a related autoimmune disorder, then steroids could be the solution.
I have gotten worse on antibiotics. I am worse now than when I took my first dose. There has been minimal improvement. Even if it can take many months/years to fully eradicate the infection, shouldn't we see progessive improvement over time?
I've written more than I planned on writing. I do not know the answer. I know I have done the antibiotic route, however, for such a long time, and it may be time for a change.
Does anyone else agree, or do you think I am foolish?
Posts: 99 | From Bucks County, PA | Registered: Aug 2008
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feelfit
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posted
I don't think that you are foolish. I have experienced exactly what you have described...long term tx with both IV and orals, worse off than before I started treatment and wondering why I am not seeing progressive improvement.
I agree that one should logically be able to expect some sort of progressive improvement.
That said, clearly, answers are not there. If I thought that prednisone could/would bring me relief and lasting results...at this point in time I would consider it. It is just so TABOO.
I also do not think that you are foolish.
feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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sutherngrl
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posted
I understand your questioning as I tend to question this as well. I have treated for 1 year with minimal improvement. I did in fact take steroids for 3 weeks, since my LLMD wondered if possibly I had an autoimmune reaction.
I felt good after 2 weeks on steroids; but since stopping them, I am going down hill.
Unfortunately I don't think anyone really has the answers. It all seems to be trial and error; but I too wonder if the autoimmune thing could play a part in a post lyme type syndrome. I mean how to we know?
How do we know that we didn't actually kill off the little spirochetes and what is left is just the damage that they left behind. Not sure that we will ever know. I am pretty sure that most people won't consider this a possibility though.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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You wonder about the same things that we all do. It's very hard to explain to someone who doesn't have this what things can race through our minds. I'm certain that my anxiety (not necessarily calling yours "anxiety") is/was a direct result of Bb. I whacked mine around fo r1.5 years on orals only, then stopped because my LLMD said that he felt that I had topped out and that we needed to take a break, perhaps let the bugs come out to play a bit. FWIW, you could always try the herbal route. Oh, and my LLMD agrees that steroids short course are not necessarily contraindicated.
Good luck with your decision. Sounds like you need to figure out that you can't always figure out this effing disease. I have not fully accepted that last sentiment myself....yet.
bt
Posts: 299 | From New Hampshire | Registered: Jul 2007
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posted
It's entirely possible that these diseases don't take the same course in everyone. For me, when I've gone on abx, it has been a relatively predictable and reliable pattern:
First, I feel much worse.
Over time, it evens out.
Then I feel increasingly better.
This was true even during acute infection, when I knew almost nothing about Lyme (I thought, "I'll take abx for a few weeks, and I'll be cured!"). I knew nothing about coinfections and didn't know I had any.
I had never heard the term "herx."
So, there was no placebo effect involved.
When I tried going off abx, I felt worse within 24 hours, which was shocking, since I had decided that I was probably cured.
To me, it is clear I still have Bb, babesia, and bartonella bugs in my system. I look forward to the day I eradicate them.
I already had immune system illness, including some forms of autoimmune disease (Hashimoto's thyroiditis), and I don't know if that played a role in me not getting better from an acute infection that was caught early and treated relatively appropriately. (I couldn't take doxy because I'm allergic to tetracycline, but I got on amoxicillin within 6 weeks of being bitten.
I think if you question whether the abx are helping, you could go off them and see how you do. I would certainly not go onto pred right away. I would wait to see what happens until after the abx are out of my system.
I used to take pred once or twice a year to interrupt non-stop migraines. (Migraines lasting 2 weeks in a row or longer.) It sure felt like a miracle drug, and there have been times since getting Lyme and co., I've wished I could take it. But, it's clear I'm still actively infected, so I wouldn't do it. However, when my Lyme symptoms improve, so do my migraines, so I gotta wonder if they're related.
-Sharon
Posts: 223 | From Western Mass. | Registered: Nov 2008
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seekhelp
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posted
I agree to some point too. At some point, one must have proof of active infection in the tissues/blood/organs to pump Abx forever into your body. These bugs are smart, but they can't be impossible to find. If LLMDs are issuing 3-5 yrs of Abx with no follow-up PCR tests and other indicators, I'd be disappointed.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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TerryK
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posted
A few things to consider:
Have you read about Dr. Alan MacDonald's work? In the book "Cure Unknown", apparently he tracked a DNA sequence in 7 of 10 Alzheimer's brains that were part human, part spirochete. He asserts that this is a "transfection", in which the proteins causing illness are no longer manufactured by Bb but by the genes of the patients themselves.
My sister developed lupus while being treated for lyme disease. I discussed this with my LLMD and I was told that borrelia inserts it's DNA into ours and this causes our immune system to attack us. My sister stopped treatment and the lupus went away.
I've been in treatment for 3 years. I have had very slow improvement but overall it has been significant. My LLMD uses aggressive detox. Without that I feel I would not be experiencing much improvement since I do not detoxify very well.
Sorry if this is a repeat for those of you who already know this but I'm not sure that everyone has read about this. Via genetic testing I have methylation cycle issues and if Dr. S's theory is correct, I don't make enough of the antibodies needed to effectively clear borrelia toxins according to my HLA testing.
If it is true, that many of the symptoms are caused by borrelia toxins then I can see where those who can't detoxify very well would be sicker or would not show much improvement until they deal with the borrelia toxins.
Jesse wrote: (because the majority of them have never experienced what it is like to be a patient with lyme disease).
I've been keeping track. I think you would be surprised at how many lyme doctors have had Lyme disease themselves.
Stay open minded. Keep looking for answers and trying things until you figure it out. You will figure it out. Trust that you will.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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TerryK
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Clearly, empirical treatment yields answers for many people with chronic Lyme disease.
If one is better while in treatment, and relapses after stopping, then more treatment is probably needed. If relapse is quick, it is likey a co-infection.
Terry I am not a doctor
Posts: 6286 | From Oregon | Registered: Jan 2006
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lymielauren28
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Member # 13742
posted
I definately think autoimmunity plays a part in many who have Lyme.
To what degree is anyones guess. I think it's likely that 99% of us have BOTH problems - an active infection AND autoimmunity. I believe they probably both feed off each other. I think for most, once you kick the infections the autoimmunity aspect becomes obsolete...once the Lyme is gone the body repairs itself.
For me personally though, I know I still have an active infection. Like Sharon, I have a very predictable pattern while on abx - worse when starting them, it evens out and then better.
I've had a few "I'm not taking any more antibiotics!" moments, so I would just stop taking them....I'd feel ok for a while, but inevitably all my old symptoms would start creeping back in. I'd get back on them and within a few days I'd start to feel better again. That in itself let's me know that I still have BB in my body...and babs too, I'm sure.
Perhaps you should try going off antibiotics for a while to see what happens. If your symptoms get worse then your likely still dealing with an active infection. Keep in mind that worsening symptoms can take a while to kick in - you'll probably feel a lot better at first.
I would try that little "test" first before going the steroids route. That's a big risk to take and you can do a lot of damage - I know as a doctor you already know that - but really think about it before making a desperate decision, ok?
Also, I'm really hesitant to bring this up because of your profession,(and I don't mean that in a bad way) but have you looked into rife machines?
When I first started on my Lyme journey I KNEW I was gonna get better on antibiotics. I didn't need Rife, or salt-c or any of the other "weird" (in my mind)alternative treatments. But after a couple of years on abx...I was better, but not well. And at least every 3-4 months I would have a major flair and lose all the progress I'd made.
I started talking to people that had truly kicked Lyme, lot's of people, and only one had been cured using antibiotics. The majority of them either got better soley using Rife or at least using it in combination with other treatments. All of them had tried long term antibiotics first and were "stuck" prior to using Rife therapy.
These were otherwise normal, logical people. They had to be on to something. So, I purchased my own machine. Before getting it, no one could have been more skeptical than me.
Well let me tell you, that little machine blew my skepticism out of the window. I've made incredible progress using it. I've recently had a major setback and have been very ill...it took me some time to realize that it was babesia coming back and to my pleasant surprise I'm having success rifing for it too.
It's definately taught me a lesson to be more open-minded. Relying on your own intuition can often prove to be more beneficial than relying on science - or in our case - the lack there of.
Anyways, this turned out to be much longer than I planned, but that's my two cents. Good luck to you and I hope you get it all figured out soon.
Lauren
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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bettyg
Unregistered
posted
hi jesse, good question that we have all thought about.
i'll ask gael's question ... have you treated for parasites/worms during your other treatments?
i have finally decided i'm going to try humaworm and see what happens; just decided this now ... haven't done anythign but have been studying things about this.
it would be foolish NOT thinking about this. i'm like others above, if you stop abx now; HOLD OFF taking pregnisone for now. see what you body does & record things as they occur.
again, i'm NOT a medical professional; just good observer on my 5 yrs. on this board. best wishes jesse! xox
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ukcarry
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Hi Jesse, yes, I wonder the same thing too, even more than some who have replied, because I am not recognising improvement on antibiotics as yet either and it is hard to know at what point to stop them.
People who feel better on abx obviously still have an infection and their problem is rather to decide when and how often to test out whether it's gone.
You don't say HOW long you've been taking them, but I've been on them for just over a year and for a period of 3 months 9 months earlier. Orals only.
Because many people seem to experience improvement only after longer treatment, at least 2 years, the temptation is to persevere, but I'm trying to keep an open mind about the whole issue you've brought up.
As others have said, you could test if you wanted by stopping abx for a while, maybe using herbs, anti-parasite treatment and detox methods or get tested for methylation issues...you can always resume them if symptoms worsen.
I agree with others that it would be better to leave a gap after stopping abx before trying steroids or any aggressive treatment,
Have you considered using something like low-dose naltrexone to modulate the immune system?
-------------------- Wildlife biologist working in tropics since 1997; tick bites in Nicaragua in March 2007, started getting sick May 2007; diagnosed with Lyme based on serological testing in Jan 2009; treatment starting Feb 2009. Wish me luck! Posts: 116 | From Seattle | Registered: Feb 2009
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posted
My LLMD told me at my very 1st visit that "the damage is done". She said "some things" will get better, like fatigue.
I was devastated! Especially since I had thought Lyme early on and tested 3x's. Plus, all my drs. and specialists were so willing to give me one diagnosis upon another, instead of clinically diagnosing Lyme.
So, I am guessing she will decide to stop treating me when I no longer make progress. Then she will have me do "maintenance".
I believe that will be a lot of sups, LDN, and I will use Rife, also. I believe I will continue with the Cat's Claw, too. We'll see.
I have read elsewhere that a LLMD said when we get off abx not to panic if we get worse, because it takes the immune system time to get working fully again. I don't know how long.
I will leave all this up to my LLMD (Who has Lyme, as does her whole family. They are all currently doing "maintenance" and doing well.)
lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
Wanted to add that my LLMD also had Lyme disease - he is well today and has been for some time. I think that's how many Lyme doctors became Lyme doctors.
After experiencing the disease first hand I think most feel compelled to use their medical backgrounds to help others who also have Lyme.
Lauren
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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posted
I am very interested in this topic. I am also wondering about this often since my wife started her treatment.
Posts: 822 | From midwest | Registered: Apr 2009
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posted
Thank you all for your thoughtful replies rather than the knee jerk "steroids are bad" response.
For those who don't know, bacterial growth and death (with an antibiotic) usually follow exponential growth and exponential decay, respectively. For growth this means that the bacterial load will double every X hours. At some point the resources become limited and the growth slows. This is why a single bacteria can in a matter of days, in the case of cellulitis for example, multiple thousdands of fold.
Death of bacteria often follows a similar pattern (not always, but often). So, let's take a hypothetical bacteria I'll call "B". A person suffers from "B" and shows serious clinical symptoms. The person is put on appropriate antibiotics. We would expect, in that case, for 50% of the bacteria to die every X hours (where X is a variable).
Take this completely made up example (using numbers that are not accurate). A person has 1,000,000 "B" bacteria. The antibiotic is started. It takes, on average, 1 week to kill 50% of the bacteria (typically it is significantly shorter than this). So, after 1 week 500,000 are left. After 2 weeks 50% of those remaining 500,000 are killed (so 250,000 remain). This pattern continues so that at 6 weeks just over 15600 are left. Thus 99.5% of the bacteria have been killed.
Why do I give this example? Because for me (and this may not apply to anyone else in the forum) I have seen no signficant improvemnent. I have good days, bad days, and "eh" days. But I see no pattern. But, if we postulate that the level of illness is related to our bacterial load (which seems logical to me) shouldn't we feel 50, 60, 70, 80% better after treating with antibiotics for a while?
I just don't see that progressive improvement. If I on the right meds (and all indiacations are that lyme is very sensitive to ceftriaxone) then why not see a progressive daily/weekly/monthly improvement?
Is that what others see?
I know some will say things like "co-infections". I for one, think they are greatly overhyped. A lot of LLMDs don't even treat them. Babesiosis is generall an acute (not fulminant) disease. It was first seen (and I may be wrong on this) is asymptomatic sickle cell patients. I think it absolutely can be transmitted through tick bites, but why would the vector of transmission change the course of the disease?
I don't know. I am rambling now. I know I had lyme disease. I live in a high risk, endemic area. I had an exposure, positive test...the whole nine yards. But, how long can I continue to treat without seeing a significant improvement?
Posts: 99 | From Bucks County, PA | Registered: Aug 2008
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SForsgren
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posted
Persistent infection -> autoimmunity
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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lymewreck36
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Member # 4395
posted
O.K. in many ways, all the above responses have covered it...but...
I have to say that you might have to treat years and years and years in some cases. It depends on so many things...how many points of infection have occurred...how many strains....how many co-infections...how long before diagnosis...
Also, it depends on each persons immune system, ability to detox....chemical make up....
In vitro and in vivo are worlds apart.
I have to say also that treating lyme is just plain messy. You can have active infection + autoimmunie activation...as I now have discovered by my own experience...so then you have to find that "angle of repose" that is some kind of a life.
AS for me....it took seven years of treatment to bring down my inflammation (c reative protein or sed rate) to single digits.
I have been on every antibiotic out there, and had trouble taking every antibiotic out there due to hypersensitivity, tendon damage, nerve damage, vision damage, on and on and on
So, as the years went by, and I had to throw two worlds up there on the balance and see which one was a better option...
Take the antibiotics and struggle with adverse events...but live, walk, sleep, write, think....
Or refuse the antibiotic and NOT have adverse events and slip slowly into a painful death where my face was paralyzed, I couldn't walk, sleep, think, etc.....
And now after 7 years of treatment, I have drug induced lupus. Any single antibiotic or anti malarial kicks off the autoimmune response....
However....without the antibiotics....my lyme/babesia slowly creeps in and robs me of any vitality.
It is a balancing act.
When I was diagnosed with drug induced lupus, I felt like I was out in the ocean with no flotation devise, and I prayed to God that something would come along to help me...
And I decided to try the SATL/C protocol....which surprised the heck out of me by holding the symptoms back, or killing the bugs, what ever is happening.
Now I have an appointment with bionic 880 in my neighboring country.
Will the insanity ever end.
I know I still have lyme/babesia because the symptoms come right back without treatment, and reinstating treatment brings on a herx.
And yes, I know what the lupus is when that comes in too...
This is just down right messy.
WE all wonder how to measure what is going on.
Hopefully there will be better answers for my children who have chronic lyme/babesia.
You CAN have lyme for decades....and you CAN have autoimmune problems at the same time...
And there is no pre-set time frame for anything.
And there are not any good tests to measure lyme/babeisa activity accurately...so add that to the mess...
WE all wonder what the best solution is for our bodies......
Last point,....I have experienced, unfortunately, that the chronicity of babesia is recognized even less than the chronicity of lyme. And babesia can get into the nervous system as well, can cause clumping of red blood cells and lung problems.....a real nasty bug.
Never discount the threat and suffering of babesia....
Mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
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posted
Persistent infection normally means all the infections have not been addressed! Very rarely does one have Lyme alone these days. PA is loaded with Babesia and I for one went three years agrressively treated for Lyme and still had horrible symptoms.
To make a long story short I finally drove out to Long Island to Dr. B and he found the Babesia in me right away. It was chronic by then. I have treated with everything including Mepron and it defintely helps my headaches and symptoms but I am having a hard time kicking it. I also have Mycoplasma and Bartonella. So if you are just treating with Lyme meds the others won't die down and you will have layers on an "onion" to peel away. During this whole process I have Hashimotos. My son also had auto immunty issues with the thyroid and once Dr. J treated him aggressively for EVERy infection all the autoimmunity stuff went a way. Blood tests are all normal now.
I had bad TMJ when I didn't know I had Lyme and got 2 steroid shots. A few weeks later my symptoms were worse than ever and the side of my head and nerve pain just lit up- took a long time to go away. So please be careful taking steroids. There are many herbs that can modulate the immune system.
Lauren- I really would like to try the rife- I did it once through a friend- Where did you get yours from- please email me!
Thanks.
Posts: 238 | From Bethlehem, PA | Registered: Oct 2004
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luvs2ride
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Member # 8090
posted
I'm going to do the knee jerk reaction. No steroids, not even if it is auto-immunity.
I have RA and I do not believe in auto-immunity. I believe something is driving the immune system like infections (many different kinds possible) hormone imbalances, gut damage, etc.
Steroids fix nothing and damage plenty. Your trade off for a moment of pain relief is a lifetime of painful damage. Steroids damage the bones and joints.
No, no, no. If you must resort to something so strong, consider the biologics like Enbrel, Humira. They do not cause joint and bone damage and so far, studies have not linked them to cancer like the DMARDS have been.
The only danger of the biologics is infection because they work by shutting off the immune system's ability to fight infection.
In fact, I would have to say that if you try the biologic and they help, you still have infection driving your inflammation and pain.
While using the biologic, keep identifying and attacking infections, hormones, diet, etc.
I don't test positive for lyme but I consistently test high positive for babesia duncani, mycoplasma, and chlamydia p. All 3 of which are known to cause auto-immune illnesses.
My doctor has me on a very low dose of Enbrel while also on Mepron, Zithromax, Plaquenil.
I am doing very well. Try anything but steroids. They are like bailouts. Work for a minute then the whole house caves in.
Sisam
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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sometimesdilly
Frequent Contributor (1K+ posts)
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posted
there's a lot here to discuss and/or respond to, but to choose one part of what you said-- that you believe that co-infections are "over-hyped," and your inference that babesia is an unlikely candidate for co-infection...
i disagree on both counts. I know objectively that in my state (MD)contracting Lyme alone is rare, and babesia is a very common co-infection here.
My 6 year old son was born with Lyme and babs. Once in treatment his Lyme bacterial load was fairly easily reduced. His babs was far more resistant to treatment, but after a long stretch of babs meds--and only babs meds-- he beat that too.
On the other hand, I have Lyme and babs too, and after 3 years in treatment I think I am nowhere near the end of all this.
What's the difference between my son's response and my own? Who knows for sure besides the obvious age difference, but one major clue is that repeated bloodtests for Mepron levels have demonstrated that my body simply does not absorb the stuff.
I sure do understand your need and your desire to make more sense of all this..we all share it. Let's hope (and work for) more research to find more answers.
dill
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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posted
I would have to agree with Sometimes Dilly. I believe that coinfections actually do not receive enough attention.
I still don't know exactly which bacteria or protozoa hubby has (positive tests from both Fry and Clongen) but protozoa meds and the usual meds for bart or BLO or mycoplasma help him more than any typical Lyme meds ever have. He has been sick 8 years and in treatment (not continuously -- he frequently took med breaks) for over 5 years.
Keep looking for answers.
Why not try some of the herbal adaptogens rather than steroids?
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Please look at www.roadback.org. It's a website devoted to treating autoimmune conditions with antibiotics. Many people with horrible autoimmune conditions (scleroderma, RA, myositis) that are considered untreatable except with steroids and immune suppressors are treated there with low dose antibiotics.
I have watched many people with horrible diseases make great improvements on this therapy.
Posts: 984 | From San Diego | Registered: Nov 2006
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Amanda
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Member # 14107
posted
I think many of us have become de facto rhesus monkeys, i.e. trial and error is done on patients. Actually, it isn't as good as rhesus monkeys, since there are no controls or other statistical designs in place to objectively measure success over a large enough patient cohort.
That isn't a complaint, I'm most grateful to the MDs willing to help us.
You could treat yourself as an observational experiment. If you decide to take steriods, carefully track your symptoms and blood work for improvements or decline.
I decided to get a cortizone injection. I worried that the steriods might make things worse and not better, but the only way for me to know was to try it. In my case, my immune system markers and counts are chronically low. After the shot, they decreased even more, and I developed more symptoms, unrelated to side effects of the steriods. The treating MDs had no idea what to make of my reaction, they had never seen anyting like it before. I thought, what else would cause the increased and new symptoms, if not for on-going infection? I must say, I wish I had never gotten that shot. But, water under the bridge...
But for you, perhaps steriods may help.
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I have to agree with others about co-infections. Clinical diagnosis and treatment for co-infections is VERY important in my personal experience and from what I've read here. Co-infections can be very difficult to get rid of.
Testing is poor. New strains of bart and babs have been discovered and more continue to be discovered and yet it seems that new strains are often not included in testing.
I tested negative for both bart and babs and we even tested relatively new strains of babs that had been discovered in States on either side of me.
Just to give a little background - my whole family has been sick for decades - probably infected on my grandfathers ranch as children. My symptoms started with a tick bite at age 5 and have been plaguing me off and on since then. Diagnosed as rheumatic fever and various other guesses as a child, then FMS and CFIDS as an adult. My symptoms eventually became extreme.
BIG improvements with treatment for babs. I couldn't sweat for years and now I do. My body temperature control was very poor and I couldn't tolerate normal room temps. We used air conditioning in the winter. Anyone who visited had to wear a coat. I couldn't go out in the summer except in the morning because anything over 70 degrees would make me sick for days.
All of that changed with babs treatment. My family and I are amazed at the differences. My non-LLMD doctors were amazed that my LLMD would treat me without positive tests. One has known me for 20+ years and the other for 6. They are both amazed at the changes. I am so grateful to my LLMD because I'm certain I would never get well without treatment for babs and bart.
Unfortunately, it was clear that babs wasn't gone after 6 months of mepron and zith. We held it at bay while treating bart.
I developed the long red "cat scratch" rash while on doxy for lyme. Lots of tissue changes with treatment for bart. The red streaks went away. Gut issues got better. Allergies got better. Foot pain better etc.. We treated for a year. I doubt it's gone due to a return of major gut issues but it's hard to know at this point since I haven't been off treatment for very long.
As far as steroids, I agree with others. PLEASE be careful. My mother was a nurse. She developed what they deemed atypical sarcoidosis. In a nutshell, they didn't really know what was wrong. They put her on steroids for sarc, she declined terribly. Lost her job. Within a few years had to go into assisted living. In her early 60's, she was the youngest person there. She has never recovered. Still there in her 70's. Suffering terribly.
My sister was put on steroids when she was in her 20's. She declined horribly but after about 5 years of being off she recovered physcially. Her personality changed during that time and she has never been the same. She is now in her 50's and has been bedridden for the last 5+ years.
I feel certain that not all tick pathogens have been discovered. I've read of so many who get well when they discover the right mix of treatments. One drug/herb or whatever, does not work but another one works miracles.
I believe that most who are deemed "Post Lyme Syndrome" by the IDSA paradigm either still have infection and/or the HLA genotype that makes it hard for them to rid themselves of borrelia toxins.
Have you taken a break from treatment? During a one month break due to elevated liver enzymes, I could suddenly use my right arm to reach up into the cupboard. It had been over 2 years since I had been able to use it normally. That was in the first year of treatment. Since then it has been fine.
Leave no stone unturned, including viruses, parasites, mycoplasma, biotoxins, mold, heavy metals UNTIL you are well. And of course, if still not well, autoimmune.
lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
The Renound known Neurologist I'm seeing believes that Autoimmunity does play a role in all of this.
He has ordered 25gm of IVIG for me daily for 5 days then once monthly.
They are drafting a letter to Blue Cross for medical necessity to get it approved.
He says IVIG has 1/3 of a chance of helping me.
I will report back once I get the drug in my body, hopefully soon.
LT
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Clin Exp Immunol. 2007 Aug 2;
Mercury exposure as a model for deviation of cytokine responses in experimental Lyme arthritis: HgCl(2) treatment decreases T helper cell type 1-like responses and arthritis severity but delays eradication of Borrelia burgdorferi in C3H/HeN mice.
Ekerfelt C, Andersson M, Olausson A, Bergstr�m S, Hultman P.
Division of Clinical Immunology, and Unit of Autoimmunity and Immune Regulation, Department of Molecular and Clinical Medicine, Faculty of Health Sciences, University Hospital, Link�ping, Sweden.
Lyme borreliosis is a complex infection, where some individuals develop so-called 'chronic borreliosis'. The pathogenetic mechanisms are unknown, but the type of immune response is probably important for healing. A strong T helper cell type 1 (Th1)-like response has been suggested as crucial for eradication of Borrelia and for avoiding development of chronic disease.
Many studies aimed at altering the Th1/Th2 balance in Lyme arthritis employed mice deficient in cytokine genes, but the outcome has not been clear-cut, due possibly to the high redundancy of cytokines.
This study aimed at studying the importance of the Th1/Th2 balance in murine Borrelia arthritis by using the Th2-deviating effect of subtoxic doses of inorganic mercury. Ninety-eight C3H/HeN mice were divided into four groups: Borrelia-infected (Bb), Borrelia-infected exposed to HgCl(2) (BbHg), controls exposed to HgCl(2) alone and normal controls. Mice were killed on days 3, 16, 44 and 65 post-Borrelia inoculation.
Arthritis severity was evaluated by histology, spirochaetal load determined by Borrelia culture, IgG2a- and IgE-levels analysed by enzyme-linked immunosorbemt assay (ELISA) and cytokine-secreting cells detected by enzyme-linked immunospot (ELISPOT).
BbHg mice showed less severe histological arthritis, but delayed eradication of spirochaetes compared to Bb mice, associated with increased levels of IgE (Th2-induced) and decreased levels of IgG2a (Th1-induced), consistent with a Th2-deviation. Both the numbers of Th1 and Th2 cytokine-secreting cells were reduced in BbHg mice, possibly explained by the fact that numbers of cytokine-secreting cells do not correlate with cytokine concentration.
In conclusion, this study supports the hypothesis that a Th1-like response is required for optimal eradication of Borrelia.
PMID: 17672870 [PubMed - as supplied by publisher]
------------------------------------------------- ME AGAIN
Dr. S goes into detail about lyme and the immune system regarding Th1/Th2 in his book "The Lyme Disease Solution"
According to the book, lyme, chronic viral infections (like Epstein-Barr virus), mercury overload, parasitic infections and chronic allergies all lead to a Th2 dominant state.
The Th1 system continues to try to attack lyme but unsuccessfully. This can be caused by several things but one that he lists is co-infections of babs and bart.
He believes that the result is that the Th1 system loses it's ability to distinguish infected tissue from "self tissue". This leads to autoimmunity and chronic inflammation.
Just something else to consider...
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Tom Grier is a Microbiologist at the University of Minnesota Medical School. Or at least that is the last I heard so I assume he is still there. He has Lyme disease and is a member here. Haven't seen him post for a long time though.
He has written several very good articles. This article is full of great info. Here is an excerpt that pertains to your example about killing bacteria.
http://www.canlyme.com/tom.html "The division time of Borrelia burgdorferi is very long. Most other pathogens such as Streptococcus, or Staphylococcus, only take 20 minutes to double, the doubling time of Borrelia burgdorferi is usually estimated to be 12-24 hours.
Since most antibiotics are cell wall agent inhibitors, they can only kill bacteria when the bacteria begins to divide and form new cell wall.(35,59-62)
This means: Since most antibiotics can only kill bacteria when they are dividing, a slow doubling time means less lethal exposure to antibiotics.
Most bacteria are killed in 10-14 days of antibiotic. To get the same amount of lethal exposure during new cell wall formation of a Lyme spirochete, the antibiotic would have to be present 24 hours a day for 1 year and six months!
Note: Antibiotics kill bacteria by binding to the bacteria's ribosomes, and interrupting the formation of cell wall proteins."
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
There is one way that I have been able to tell in my case that it is a persistent infection. When I stop antibiotics I start to get new symptoms that then worsen and resolve upon retreatment
Posts: 425 | From NY, United States | Registered: Mar 2005
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posted
Thank you for posting this. There are a lot of us in the same situation with no real answers in sight.
I recently had to stop all abx due to elevated liver enzymes and so had to reconsider the treatment path that I was on. A few months after that, I found out that I had new brain lesions. I had a neuro symptom flare while doing abx before the whole liver enzyme elevation occurred. So I honestly don't know if the new lesions happened during the flare or after I was off the abx???
It's hard to want to go back on abx when it took over 3 months to get my liver back to normal. It's hard because I obviously have damage done and don't know if my symptoms are due to that or to ongoing infection or to some autoimmune disease triggered by the lyme.
I might look into that researcher in Florida that was able to find the DNA of lyme in the blood. IF I had evidence of an ongoing infection, it sure would help me decide how to proceed. I have started to rife and am doing some buhner herbals in the meantime.
Some of us are just not able to do the unending abx routine. We also have to consider the autoimmune aspect that has been proven with regards to borrelia.
posted
wow, what a range of replies; learning a lot here...bg
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TerryK
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posted
Jesse wrote: How do we know that the "post-lyme syndrome" described by the IDSA panel is not what we are facing?
Do your symptoms fit their list of symptoms for "post-lyme syndrome" or do you have more unexplained symptoms?
These are the symptoms listed in an article on the IDSA website for post lyme syndrome http://www.idsociety.org/newsArticle.aspx?id=8074 post-Lyme disease symptoms: fatigue, musculoskeletal pain, difficulties with concentration or short-term memory, or all of these symptoms when experienced by patients despite resolution of the objective manifestations of infection by Borrelia burgdorferi after antibiotic treatment. Seen in a minority of patients.
post-Lyme disease syndrome: symptoms above lasting longer than six months
I haven't looked for a more formal definition but I'd be interested in seeing it if you have one.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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djf2005
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posted
many of us, including me, are HERE BECAUSE of steroids.
i done care what dr where told u this was a good idea.
follow's scott's lead.....
persistent infection-->immune deregulation leading to unusual/unbalanced/over-reacting immune response.
steroids will provide short term relief while causing long term damage, possibly costing you your life.
there is no doubt in my mind on this subject.
believe me, i question many things every day, but this is a subject i can say that w/ my whole being screams do not do this.
best of luck to you
derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
posted
I would think that serial Western Blots against the same assay may help guide a decision. You mention that you have less reactivity on a Western Blot than you had previously, but of course you can not be sure that the infection is no longer active.
How about discontinuing abx and trying a short course of glucocorticoids. Follow that up in several weeks with another WB. Increased responsiveness to previously present IgG bands would be suspect, any new or more reactive IgM bands would be a red flag regarding persistent infection in my mind.
Posts: 263 | From Capital Region, NY, USA | Registered: Jun 2008
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TerryK
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posted
What happened to Jesse?
Any comments Jesse?
Posts: 6286 | From Oregon | Registered: Jan 2006
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karenl
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Member # 17753
posted
Don't forget heavy metals. Dr. K, Dr. H, and many comprehensive doctors all say that clinically patients with lyme and metal poisoning don't seem to improve much until the metals are addressed. Mercury can cause autoimmunity all on it's own without lyme. If you've ever had an amalgam filling then you most likely have mercury poisoning. I know one doctor that leaves this out and he has patients that have been on antibiotics for 5 years and still haven't improved, even though they've tested extremely high for heavy metals.
So it makes sense to address the issue.
Posts: 499 | From Indiana | Registered: Oct 2007
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luvs2ride
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-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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posted
Jesse, I don't think you are foolish & as I start my 6 yr old son on treatment, I wonder the same thing.... Is there really a cure or will this be a chronic situation.
I've decided to give him the year under Dr. J to see what happens. He's young & I hope being so young he'll have a chance at beating this thing.
-------------------- Mom to a 5 year old lymie.... Taking it one day at a time. Posts: 182 | From Ipswich, MA | Registered: Jul 2008
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Shosty
Unregistered
posted
I am glad that Jesse posted this, and glad that some people here are thinking along the same lines.
Both my daughter and I have developed lupus, while also testing positive for Lyme. I was on antibiotics for 6 years, and my lupus has only gotten worse, with an ANA of 1:5120, and a CRP that was in the 80's.
For many of those 6 years, I would have the same doubts as Jesse, and try going off, only to get really sick immediately. The speed with which my symtoms would intensify made no sense. I have been told, later on, that antibiotics are also anti-inflammatories, and perhaps that function played a role.
I was convinced that the return of symptoms within a day or two meant that I still had a virulent Lyme infection.
I finally saw an MD who helped me get off the antibiotics. He told me to persevere for a couple of weeks once off, and things would improve. He was right! For anyone trying to stop antibiotics, give it some time. I wish I had stopped 4 years earlier!
Antibiotics did a number on our immune systems and guts. These are not harmless drugs! They have their place, and long-term meds may help some, but if you are not improving, then it might be wise to minimize their use if you can.
We also have avoided treatment of co-infections. Our LLMD, who is courageous and has been helping Lyme patients for years, does not usually treat. I believe the meds are toxic and am afraid of them, and afraid of all the combinations people are on for them. For myself and my kids, I wanted to wait for more evidence that convinced me that the co-infections could also be chronic. But that's just me, and my family reacts very poorly to meds, so we have to be extra cautious.
I have to day that both my daughter and I felt much better OFF the antibiotics. The most severe symptoms were gone in the first 6 months of meds, and I really feel that the remaining years I was on did not do much for me.
One other thing: my paresthesias are almost gone now that I have eliminated food allergens from my diet. These are allergies identified by elimination, not by testing. I was amazed. I am even thinking that the original onset of severe paresthesias that I had one night in 2001 were an allergy to a med, and not Lyme at all.
Also, for autoimmunity, Plaquenil can help. Steroids for more than a few days are a serious step, and Jesse (an MD) well knows.
The open-mindedness to IDSA and to some of the doctors who are researching autoimmunity and Lyme is heartening here, not just medically, but politically. I believe that being open-minded will bring us more help than polarized discussions about "ducks" etc. I pray for more research funding of our illnesses, but also, at some point, accept their mystery and just do the best I can.
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TerryK
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Shotsy wrote: I was convinced that the return of symptoms within a day or two meant that I still had a virulent Lyme infection.
I have been told that if symptoms return within a short time then it is likely a co-infection. As you can see from Tom's calculations, borrelia is slow growing so that makes sense to me.
If the abx you were taking have the property of an anti-inflammatory then I can see where that might be a possibility.
Do you get the same relief on anti-inflammatories that you get from abx?
Just curious, have you had the slides done at Fry or Clonagon? Does anything show up there?
Shotsy wrote: Also, for autoimmunity, Plaquenil can help.
As you probably know, Plaquenil is a treatment for malaria and is often used for babesia. If it helps, it might be worth looking at babesia if you have clinical symptoms that look like babesia too.
In any case, I'm very glad to hear that you and your daughter are feeling better. I sure wish we had more answers.
Terry
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