posted
Hi Dana, I don't know the science about this but I do know a llmd who makes her daughter take doxy everymorning -- this as a constant treatment protochol.
I have also heard of an md who after recovering from lyme still goes on abx every year for several months.
I don't know but I can see myself being on abx on and off for life...
I may be way wrong about this though...My problem is opposite, my lyme symptoms lessen off abx and roar back when I'm on them...
Since you h ad a nine year remission, your body certainly knows how to take care of itself once lyme is under control...
I will pray for a remission today for you...
-------------------- We are spiritual beings on a human journey...
My lyme has relapsed but has never come back worse than the first bout I had. If it did I do not know what I'd do.
Mine came on like gangbusters in 1996 slammed dunked me and had me a near cripple for six months.
My relapses have been painful but nothing like the first bout. I guess that is why this disease is so confusing as everyone has a different experience.
I hope you find releif, and some answers.
Posts: 167 | From Sunny side of the street | Registered: Mar 2002
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dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
5Dana,
Could it be a coinfection coming back for you and not Lyme? Have you treated any coinfections?
DLL
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Before I knew about lyme, I was on prolonged antibiotic therapy for an unrelated issue and I had a remission in most of my symptoms for several years. I then had a severe relapse and have been disabled since then, years ago.
I've read that when survival conditions for Bb are not good, like during antibiotic therapy, Bb will go into a cyst form in the tissues where it can survive a long time in a sort of suspended state. Then, when conditions are favorable for it's survival, like during a time of high stress when the immune system is depressed, it can come out of cyst form in much greater numbers than when it went into cyst form. Something like up to 5 per cyst.
Don't know for sure that this is correct but I've seen it in several places, one which seemed quite reliable. Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
hi and thanks for asking such a good question. I've been on abx for almost 2 years straight....every kind you can imagine....my Lyme is 75% better than 2 years ago when I was diagnosed.
I've often wondered what will happen when I get off the abx completely....I lost my job after 30 years due to Lyme and am on disability now....I account the resting and less stress to a big portion of why I am able to cope with Lyme....
Every day waking up you never know what to expect from this disease...that's what is so frustrating not only to our LLMDS but to the patients....it is so unpredictable....
I wear my Lyme bracelet and pray for all the people with it every day....it is a life changing disease....we need to encourage and inform each other of our daily struggles, trials, and victories...
I'll never give up trying to live a good life and hope you don't either....I have faith in my LLMD that when he thinks I should try and get off the abx then I will....until then I will take them every day if I have to for survival with this Lyme......
-------------------- Debbie V. Posts: 125 | From Louisiana | Registered: Oct 2004
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Thankyou Humanbeing:
Yes.After having untreated lyme for 7 years I went on IV.I was able to stay in remission for 9 years by taking doxy everyday.
With each attempt at trying to go off,I would relaspe...so I stayed on the doxy.
After 3 years of aggressive treatment, I am on holiday for stomach & GI problems. The level of doxy has to be at 400 a day to hold me. But my stommach can't handle.
Thanks TerryK : I have also read where 5 ketes will pop out of a cyst and this could explain alot. I have been on cyst busters so I just don't get it.
I have read several posts about this topic. And know I am not alone in when, abx treatment is stopped the lyme comes roaring back worse than ever.. I just wanted to know a scientific explaination.
Thanks dontlike liver : I have been treated for the co's. But the babs seem to be stubborn to beat.
Thanks Vandeb for sharing : Do not worry about your future. This post is not entended to spook anyone.
Some people do quite well when they go off abx (or tapper off) and some do not.
Do not be afraid. Everyone is so different.
Anyone else know any scientific explaination why?
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Hi Dana, I'm not an expert but this is what I would do based on the reading that I've done. I'd ask my doctor to follow Dr. B's recommendations on testing for inapparent immune system problems. It is mentioned in his 2005 document but if your doctor doesn't already know he may need to consult with ILADS to find out the appropriate work-up. I'd work on building my immune system after the work-up, even if no obvious defeciency showed up.
I'd check the viral infections that are mentioned by Dr. B and every other infection I could think of that might be involved and get treatment for anything that seems reasonable. After that, if I still had symtpoms, I'd ask to be re-treated for Lyme.
Before re-treatment, I'd ask my Doctor to consult with the ILAD's group about my case if he has already followed their treatment recommendations on me without success. If the treatment recommendations haven't been followed, I'd find someone who is willing to follow them whether it be my current doctor or someone new.
You may have already done all of this and more but I thought I would throw it out there just in case any of it is useful to you. I really think following the guidelines that have so carefully been promulaged are probably our best chance of getting well.
If none of this works or has worked for you there is still every reason to be optimistic that more will be learned in the future that can make a difference for you in getting rid of these infections.
I wish you the best in getting this mystery solved. Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Here's another idea. Maybe you had Lyme, and it's not the Lyme coming back. Instead, it's the symptoms coming back in response to another trigger.
We get all these infections and are exposed to many toxins. Most people react fine. Their body just adapts. But, if you have Lyme, there is basically an overload on the system.
Now you get rid of the Lyme, but the body doesn't forget. So, a couple years later you get a small case of food poisoning. Most people wouldn't even notice it. But your body reacts the same way it did when you had Lyme, because that's what your body knows now.
I say this because part of my problem is a reactive arthritis caused by salmonella. My LLMD has taken me off all foods that are common food poisoning, because she says if I ever get food poisoning, it will bring my symptoms back.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Hi Aniek, So is your doctor saying that your immune system is permanently damaged?
This sounds like what some doctors (mostly ducks from what I can tell) seem to be saying when they say that chronic lyme disease does not mean that you have an active infection but that your symptoms are caused by an immune system that is over-reacting but maybe I'm not understanding what your doctor is trying to say.
Please don't think I am saying that your doctor is a duck. I'm just trying to understand what she is saying. Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
Probably because we are all still guessing.
Look at all things people have tried from alternative,herbs,strong meds,rife++++.
Basically still all guinea pigs, guessing, plus no 1 knows absolute cure. sure maybe remissions, especially younger.
1 Thing appears has trouble fighting is High testosterone levels. Research shows testosterone it can` t battle.
Also younger, with high hormone levels appear to do better 20`s. Caught early before advanced & mutated, like many diseases catching early have better chances.
Same with Lyme when you compare the younger to older struggling. Docs who are on top of situation. Not like many of us 10 yrs. before they know what really is wrong.
Many variables, those seem to be at top of list. Kerry
Posts: 746 | From Clearwater/fl/Pinellas | Registered: Jun 2003
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posted
Have you tried going on an herbal abx therapy when you're off of prescription abx? That's what I plan to do, bec stories like yours are scaring me about relapsing.
Posts: 449 | From Pasadena, CA, usa | Registered: Aug 2005
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Terry,
I think there is a difference between what I was saying and what the ducks say. The ducks say you had Lyme, it's gone, you are going to have the symptoms forever because your (joints, nervous system, brain) is damaged.
What I'm saying is that you would be perfectly fine and healthy once you treat the Lyme, but that something else could trigger what appears to be a relapse. It's not that your body is damaged. But perhaps your immune system has been altered, so it reacts to a new infection as if it were Lyme.
I think it's important to consider this, because then it would cause for a different treatment depending on the trigger. Or maybe there is something we can do to strengthen our immune system.
In a similar way, if I didn't work with a physical therapist and do yoga or other exercise, no amounts of abx could eliminate my pain. My muscles were inflammed for 17 years and needed to relearn how to move and relax. I had to relearn how to use the right muscles. Maybe we have to reteach our immune system as well.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Thanks for explaining Aniek. It makes some sense that we may need to re-train the immune system. Also that many infections probably produce some of the same symptoms that lyme causes. Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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Lydie
Unregistered
posted
Do you relapse immediately? My Lyme comes "roaring back" if I miss even two doses,meaning, within 24 hours.
Since this happens every single time I skip a day, I obviously have some sort of bacterial infection that is kept under control, but not eradicated, by the antibiotics.
Since I have had positive Lyme tests, I assume that Lyme is a good candidate.
My LLMD says he has a small number of patients like me, who can't go off abx wthout serious problems cropping up immediately. I start slurring speech, lose control of my hands, twitch all over, get foggy etc.
This pattern certainly fits the cyst theory, but why only some of us? My LLMD says that starting abx can be like opening Pandora's box. For those of us who have had Lyme for a long time, some of the bugs were sequestered in our tissues, and the meds "stir things up" and chase them out into a more active state. According to him.
I know I can't go off. Sometimes I wish I had never gone on abx, because it might have been possible for my immune system to handle the original situation, even with symptoms like neuropathy...but now it seems beyond my immune system's capacity.
I do have a positive ANA, and the HLA-DR4 genetic marker, both of which show autoimmune problems or tendencies.
Please let me know if you learn anything,a nd I would like to know if anyone else relapses badly IMMEDIATELY.
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posted
My daughter's relapses have come on slowly; but new symptoms emerge, and in some cases, are worse than initial onset.
She doesn't support the theory of youth having it easier. She just turned 20; and since falling ill at 16, she has developed vaso vagal syncope, severe gastric problems ( mostly resolved now), has the HLA DR genotype, no MSH, below normal VEGF; and most recently has tested positive for a protein S deficiency which makes her vulnerable to blood clotting. As if that isn't complicated enough, she now has a low platelet count AND low WBC, which makes blood thinning therapy impossible!
She was a very physically fit, athletic girl when this started. But this, nor youth, have prevented the plundering of her body.
Posts: 422 | From Herndon, Virginia | Registered: Oct 2005
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posted
I was told by my LLMD that doxycyline only "suppresses" the lyme bacteria, it does not "kill" it.
When I tried to go off of doxy I got sick again within 36 hours. The symptoms felt worse than before. I'm not sure if this is because I got used to feeling better for a while or if the bacteria comes back stronger.
I've been diagnosed (blood test positive)with Lyme, Erlichia, Bartonella & Q Fever.
I have to stay on doxy (400mgs a day) in order to make all of my symptoms go away. I'm also on 3000 mgs of amoxicilan (for co-infections).
My personal experience seems to be telling me that I'm probably going to be on antibiotics for the rest of my life.
As to why this occurs I don't know. I've read about the bacteria turning into cysts in a hostile environment and then once antibiotics are stopped they come back full force. This does make some sense to me since I can't seem to get rid of this disease. At least it's some sort of explanation.
It would be wonderful if someone would come up with an antibiotic that would actually kill the bacteria so that we all could get better once and for all.
Posts: 50 | From Virginia | Registered: Jan 2006
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posted
I used to relapse badly, horribly, immediately, the moment I stopped doing something (taking essential oils or antibiotics).
Over the years my bacterial load went down. That is including the bacteria that hid during treatment, which would come roaring out when I stopped.
Each time I treated a flare up I believe it lowered the load, and the tendency for the disease to come roaring back diminished slowly.
There would be more hidden in cysts, in areas of poor circulation in the joints, in my eyeballs, in my brain, etc.,
but I kept aggressively treating it, and taking one step back and two steps forward consistently, I don't have those situations any more where the Lyme comes roaring back.
I also think that I know what I need to do if I feel the slightest hint of a flare up now. I take the illness very seriously even now that I am quite well.
Any hint of it and I use every tool I have to knock it down before it has the chance to commit invasion of the body snatchers again.
I lead a normal life now. I just took a three week action packed trip to India and stayed just fine, even with pollution, stress, weird food, and constant activity. I could not have ever imagined that possibility three or four years ago. Four years ago, I was the walking dead.
The key is to keep on killing it, and to never let it get the best of you by multiplying, including while it is hiding in whatever form it hides.
Farah
Posts: 208 | From New Mexico | Registered: Dec 2005
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Lydie wrote: --------------------------------------- Do you relapse immediately? My Lyme comes "roaring back" if I miss even two doses,meaning, within 24 hours ----------------------------------------
I've read that Bb is a slow growing bacteria. Something like 12-24 hours to replicate vs 20 min for some other types of bacteria.
Would it be possible to get that much growth in such a short time? I assume that your bacterial load should be fairly low if you are on effective long term antibiotics so it doesn't seem like you should be symptomatic that quickly.
Maybe your bacterial load isn't that low because you haven't been treated for that long?? I'm no expert and I'm not a medical professional so I really have no idea but it does seem curious.
Perhaps it is the cysts coming out after such a short time? I was under the impression that the cysts take longer to come out but I could be wrong about that. Such a mysterious and nasty bug.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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