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Does Lyme treatment ever end?


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Guest pandas16

So the more posts I read, even going back a year or more, it seems like there's just more and more and more co-infections and that the herxing and discovery of more "stuff" never ends. How long does Lyme treatment take? Is it a life long thing? Like SF Mom ( Hope you don't mind that I use you as an example) You said that in treating Lyme, you found all these other infections/viruses etc. Now, you claim that that's good and that it's helped- but has it really? Or has all the antibiotic use just disturbed bacteria that was dormant and not really all that problematic?

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So the more posts I read, even going back a year or more, it seems like there's just more and more and more co-infections and that the herxing and discovery of more "stuff" never ends. How long does Lyme treatment take? Is it a life long thing? Like SF Mom ( Hope you don't mind that I use you as an example) You said that in treating Lyme, you found all these other infections/viruses etc. Now, you claim that that's good and that it's helped- but has it really? Or has all the antibiotic use just disturbed bacteria that was dormant and not really all that problematic?

 

Gosh, I sure hope so! It really has happened for some people. You may not find many such examples on here, as lyme is a relatively new topic on this board (last 18 months or so). There are more such examples on a longer-standing lyme message board such as lymenet. I keep thinking I'm close, I am certainly reaping many rewards being at the place I am, even if I never get any further, although I continue to work to get all the way.

 

It might be fair to say that the docs who treat lyme seriously have still been finding their way over the last decade or so--they know some important things, they do some good things, and it is enough in some cases and not enough in others. There are some innovative treatments out there, not everyone just uses boatloads of antibiotics. Some people are using photon treatments with detox support to get well, Dr. Klinghardt is using a lot of herbs and other nontraditional things rather than antibiotics, and then, for some, smaller amounts of antibiotics to get well at the end of treatment. He is finding the Babushka principal of "layers" of bugs and conditions to deal with. He talks about how the world has really changed in that decades ago miracles could be performed with a little acupuncture here or homeopathy there, and the world is simply not that way anymore. One big part of that reason is the EMF's, especially wireless signals, that are bouncing around everywhere. So, these serious illnesses are taking time for many treatment approaches.

 

There are estimates out there as much as one year of treatment for every year of illness. I sure hope that is not the case for me, and doubt it very much, as that would mean about 40 more years of treatment for me! Another estimate I have seen is 3 months for every year of illness. Reality is, it varies so much, no rule of thumb is very good, I think for many it does take at least 2-3 years. For some it is longer. Some keep fighting and 10 years later are wondering if they will ever get there. I think how sick one is and the treatment approach one takes can matter A LOT.

 

I think sometimes we do treat things in nonstrategic ways, and mess things up. I am now fighting fungal infection from all the antibiotics. Maybe if I had started with treatment for parasites and fungus first, that order would have avoided this situation. Now, my situation was urgent, and that order might have meant I lost my job and wouldn't have had funds to finish treatment. So, there are many considerations. But I think there is both -- there are just so many bugs by the time some of us find out where we are with this illness, that there is a lot of work to do with different bugs, but, also, yes, we are playing wack-a-mole some and there needs to be an overall strategy to get from where we are to the end of being done. Sometimes the optimal route has a few detours but we take a few extra ones because we don't know everything.

 

I don't think we can ever get rid of ALL of the bugs, the more I see and hear, the more I think that is an unrealistic goal. But the goal of getting the life back and stopping treatment is real, people do it, it happens.

 

Okay, done rambling for now, off to another crazy place to get another crazy test...

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I know I won't stay on antibiotic treatment for years but I imagine I will be on natural treatment for a long time. That is a small price to pay for the way I feel now. I am much better than I was last October when I started treatment. Lowering my bacterial load with abx has has made it so I can keep my job and take care of my children and I don't feel like I'm going to die. It really is much better for us. My 9 yr old's state of mind and pain levels are so much better than they were a year ago.

 

We do still have work to do before I would consider us on maintenance and I think I will always be working on symptoms from something (lyme, viruses, candida, puberty, aging...). I'll always search for answers to help our lives be better and to make sure that we don't ever get on the bad side of lyme again! I've had lyme for probably over 30 years and my girls have had it their whole lives. It does get overwhelming and it does get old and I do get impatient but ultimately I mostly feel grateful that I have found out about it and we are getting better.

 

susan

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I know I won't stay on antibiotic treatment for years but I imagine I will be on natural treatment for a long time. That is a small price to pay for the way I feel now. I am much better than I was last October when I started treatment. Lowering my bacterial load with abx has has made it so I can keep my job and take care of my children and I don't feel like I'm going to die. It really is much better for us. My 9 yr old's state of mind and pain levels are so much better than they were a year ago.

 

We do still have work to do before I would consider us on maintenance and I think I will always be working on symptoms from something (lyme, viruses, candida, puberty, aging...). I'll always search for answers to help our lives be better and to make sure that we don't ever get on the bad side of lyme again! I've had lyme for probably over 30 years and my girls have had it their whole lives. It does get overwhelming and it does get old and I do get impatient but ultimately I mostly feel grateful that I have found out about it and we are getting better.

 

susan

Hi Susan,

I am new to this forum (actually participated in it last year) and I was wondering what kind of symptoms your 9 year old son was having due to Lyme. Is he better today? Andrea

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Hi Susan,

I am new to this forum (actually participated in it last year) and I was wondering what kind of symptoms your 9 year old son was having due to Lyme. Is he better today? Andrea

 

Hi Andrea, I remember you from last year! I have two girls and my 9 yr old is not 100% but before two weeks ago I would have said she was at 95%. We are having a little back sliding right now I think due to having to stop her vitamins and eating too much dairy. Maybe it's a 4 week herx too, not sure.

 

She was diagnosed with pandas prior to her lyme diagnosis. Over her 9 years she had sensory issues (sound, touch, smell, light), unusual fears, separation anxiety, worries, poor sleeper, just right OCD, gluten sensitivity, allergies, pain which would sometimes prevent her from walking), muscle twitching, burning pain. Her just right OCD would cause huge problems for us and we were in a pretty bad place last year.

 

She started lyme treatment in December 2010. Her reasonable mind came back within a month. It goes away with herxing and when she gets triggered by something but it's generally not nearly as bad as it used to be pre-lyme treatment. She rarely complains of pain or twitching and never has any burning pain. All of her symptoms are less and manageable. She has fewer meltdowns in school and everyone comments on how much better she is doing. She is having a very fun summer at camp with very few complaints.

 

I see that we need help with her ocd and anxiety/fears. This is what seems to pop up the most now. Maybe it's just a little more healing that needs to be done. We are looking into KPU/HPU as a possibility but I suspect that more for my 8 yr old. She is taking allergy shots but no real improvement to allergies yet (she's allergic to just about all alergens like trees, grass, dust, cats....).

 

I hope that helps.

 

Susan

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I do not mind you sighting our experience.... Ours story is not dissimilar to many that suffer from MCIDS with Lyme potentially being the core issue. However, I do think our story is overwhelming to those that feel their children's only issue is PANDAS.

 

I'd like to sight an example because this child was so severe.

 

A 13 year old boy in CT. In and out of the psych wards for the last couple of years and diagnosed with OCD, Bi-Polar, Schizophrenia. In June of 2010 he was diagnosed with PANDAS and parents proceeded with hdIVIG. He was so much worse after hdIVIG he ended up at the psych ward over at Yale for several weeks until things calmed down. Parents took him to Dr. J for testing and they found Lyme. Dr. J started treating for Lyme and gave clinical diagnoses of Bartonella. He started to improve and after six months of treatment he was able to go outside and stop showering multiple times a day 'YEAH'. There were other improvements. His body finally broke out in typical Bartonella rash and were able to confirm diagnoses. Eventually his liver enzymes started climb and Dr. J temporarily stopped antibiotics and child regressed within weeks. Dr. J then recommended another hdIVIG but the parents had been so paralyzed by previous experience they decided to pursue a second opinion. The new LLMD found Lyme, Babesia, Bartonella, XMRV 'virus', Fungus and confirmed liver issue (I do not believe he ever had strep titers)... This particular Dr. prescribed a detox to support liver and antibiotics less toxic to liver and child is trending better once again.

 

The most important statement to come out of the second opinion was: "This is how you get Schizophrenia" it is the combination of those above issues that caused the cascade of events for this particular child. He still has a long way to go with treatment but it is now obvious to the parents that he can and is much, much better. He is not just mentally ill. AND, there are many other parents that were told their children were just mentally ill when PANDAS treatment didn't last or help.

 

So, yes 'in answer to your question' unraveling and treating each issues has not only helped the boy mentioned above but it has helped our entire family. We are so much further along then we were with PANDAS treatment.

 

My older son has been OCD free for almost 18 months, his tics are currently 98% in remission, he is no longer responsive to other sick individuals, he can get sick and not have a PANDAS type flair. His only remaining symptoms at this point in time that have mostly resolved from KPU treatment are dark circles under his eyes 'he looked depleted' and chapped lips. He hardly responds to antibiotic rotation 'herx' and we've had two changes in the last month with only one day complaint of headache and one day of just not feeling well. We are currently rotating to treat the babesia.... BUT, his hyper immune response is turned way down and we are hopeful that very little herx'ing will occur but only time will tell. We are pushing for complete resolution of 'all' potential symptoms in hopes no relapse will occur so the last 2% is huge in the Lyme world.

 

I was dreading the thought of treating myself along side my children due to the fear of the herx and a potential inability to care for three sick children. I decided to move forward with treatment immediately because I wanted to be able to relate to my children's treatment process. Fortunately, I felt a lot better almost within two weeks after initial herx 'some do'. I got some perspective for how much better my life could be..... I didn't even realize I was living in such a fog. I went on complete rewind when they started treating me for Babesia and felt like I was a lot, lot worse for almost 4 months. Now.... so many things have resolved, knee pain, hip pain, tingling, headaches, urinary frequency, twitches, hair loss, etc. Currently, I suffer from just a couple of issues, swollen Lymph nodes 'they ache almost daily', my thyroid is a little out of whack due to treatment, yeast issues due to antibiotics and occasional late afternoon fatigue which is probably related to the 4 viruses I am confirmed positive. I have been on multiple antibiotics since last Oct. 2010.

 

I won't bore you with my other two children's recovery other than to say its been life changing. I am greatly indebted to those that helped with PANDAS diagnosed that brought my older son relief for an entire year, I am forever grateful for the Lyme et al posts and encouragement.... We are very hopeful as a family and unraveling all of the issues and treatment choices have helped.

 

-Wendy

Edited by SF Mom
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I am not off antibiotics yet.... I am hopeful that two of my three children and myself will be off antibiotics in 2012. I think it takes time to unravel everything one harbors and also time to get load down and the immune system functioning better to handle what is left.

 

Average time is two years for a child with Lyme et al.... some shorter, some longer depending on infections, mold, mineral deficiencies, gut issues, viruses, etc. If you've been sicker longer, you probably harbor more issues and can anticipate longer recovery.

 

-Wendy

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I should also mention at sudden on-set my older son's ASO was 244 and he had no anti-DNase-B. When those numbers fell initially his TICS and OCD improved. They did resolve with PANDAS treatment and at last check (June of 2010) his ASO was 90 and his Anti-DNAse-B was 60. I know he was exposed to strep numerous times and was initially reactive.... I believe that the anti-DNase-B registering is showing healthier response immune response. We do use Bactraban Nasal ointment a couple times a week to protect from ongoing exposure to strep and staph (macrons).

 

-Wendy

Edited by SF Mom
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Yes, both the twins had IgG 1 and IgG 3 deficiencies (1 and 3 is one's ability to fight bacterial infections) with overall serum deficiencies. Our DD having the worst IgG results but had the least amount of symptoms. Her CAM Kinase was also higher at 159 while twin brother was at 148.

 

For her age group: Normal IgG 3 is 17 to 25. Over time those numbers were going down, not up. Last year prior to Lyme treatment her IgG 3s were 13.... at last check she is a 15. Not normal but heading in the right direction. Her IgG 1s were in the 200s. We will continue to track them to confirm direction and within normal range. Her brothers are trending in the right direction too.

 

We also experience similar with the strep pneumo deficiencies. Younger DS was deficient in 13 of 14 serotypes < .03 at last check he is now only deficient in 10 of 14 serotypes.

 

Its a slow process... and we will continue to track IgGs and strep pneumo titers to confirm improvements are not just a one time blip.

Edited by SF Mom
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So the more posts I read, even going back a year or more, it seems like there's just more and more and more co-infections and that the herxing and discovery of more "stuff" never ends. How long does Lyme treatment take? Is it a life long thing? Like SF Mom ( Hope you don't mind that I use you as an example) You said that in treating Lyme, you found all these other infections/viruses etc. Now, you claim that that's good and that it's helped- but has it really? Or has all the antibiotic use just disturbed bacteria that was dormant and not really all that problematic?

My son and i stopped our Lyme treatment a year ago and we are doing very well a year later. I believe you can get rid of Lyme and these other infections. My daughter is still dealing with air hunger and some fatigue and she is on herbal treatment for babesia. I believe that it is important to believe you can get rid of this because to assume you will always have these bugs is self-defeating. My son was quite ill and I was worried he would never get rid of Lyme. I always reminded myself that Pamela weintraub got rid of Lyme and she was super sick. I feel great and do not need naps anymore-no fatigue!!! I am optimistic that we can stay well. Think positively.Of course I continue to work on keeping us well and keeping up with the latest lyme so I am prepared if it does come back.

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So the more posts I read, even going back a year or more, it seems like there's just more and more and more co-infections and that the herxing and discovery of more "stuff" never ends. How long does Lyme treatment take? Is it a life long thing? Like SF Mom ( Hope you don't mind that I use you as an example) You said that in treating Lyme, you found all these other infections/viruses etc. Now, you claim that that's good and that it's helped- but has it really? Or has all the antibiotic use just disturbed bacteria that was dormant and not really all that problematic?

 

I think that for a lot of doctors once you find a weird infection like Lyme or any of it's co-infections you have more motivation & a better reason to go hunting for moRe, which is why so many of us that get diagnosed with Lyme end up having a bucketload of other infections as well. My LLMD & I argue frequently about which came first - the immune suppression or the Lyme. As far as I'm concerned it differs from person to person & the successfulness of treatment greatly depends on that answer. Lyme treatment lasts different lengths of time for everyone, for me it's 8-12 months since I had four coinfections including Babesia, the most difficult to get rid of. Antibiotic treatment can take quite a long time but it's important to remember that complete remission of all symptoms is rare even when all bacteria/viruses/etc.. are eradicated or made dormant because the infection(s), particularly when harbored untreated for years on end, can negatively impact your neural pathways, effectively making your body "used to" producing these symptoms. For a lot of patients that is why treatment drags on sooo long ~ they just don't feel all the way better! From day 1 with my LLMD we established that we are not aiming for 100% improvement because it would be unrealistic. Some patients choose to continue treatment for years, others make do with what they've got.

 

If the infections weren't really "all that problematic", why would we be seeking treatment in the first place? I have not found a single person who saw no difference in their general wellbeing &/or livelihood with Lyme treatment, be it a small victory or a huge triumph. Why wouldn't antibiotics & antivirals help clear bacterial infections & viruses? Herxheimer reactions are not just Lyme mumbo jumbo ; they are a completely legitimate medical fact & are accepted across the board by doctors. If treatments that make you worse before they make you better are inherently flawed or not helpful, modern medicine as we know it would be in big trouble.

 

For those of us that got Lyme because we were immunodeficient (as opposed to those of us who became immunodeficient because we got Lyme) there's basically no telling how long our other infections that may have only come to light with Lyme treatment have really been hiding away. Chronic infections of any sort can be disastrous to the body, so when you have someone like me who has not one or two but at least six I can't imagine how treatment wouldn't be at least somewhat helpful! Personally, although I am not & probably never will be back to my old self, these five or so months of treatment have made an astronomical difference in many aspects of my day to day life. When I started treatment the proof was in the pudding for me ~ I have never in my entire life felt as miserable as I did for that first week of herxing. Went on Mepron? Gastrointestinal issues got a lot better. Went on Valacyclovir? My disposition & mood changed DRAMATICALLY. Doxycycline? Helped my energy. Cefdinir? Helped my Dystonia. The list goes on & on but I'll save you the details, haha. I think I speak for most people who can't even remember life without Lyme & all of it's buddies when I say that yeah, treatment can go on for a long time if you want the whole nine yards but at this point I'd be okay with just a couple inches of change!

Edited by EmersonAilidh
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DS, 12, had four tick borne infections and several viral issues including Coxsackie and HHV6. His liver was failing before we started treatment. I'm not sure which came first, the infections or the immune issues, but I know that my son would not have lived longer than a couple of years without antibiotic treatment.

 

My son no longer has suicidal thoughts or uncontrollable anxiety. His physical health has improved to where he can walk, swim, jump on a trampoline, and better enjoy life. Mentally, he went from a C student in math to getting the best grade of all the fifth graders on the end of year exam. HD IVIg started us on this path to health and antibiotics are helping us to battle back the microbes one day at a time.

 

Do not be discouraged by the lengthy antibiotic usage. With proper detox, probiotics, and close monitoring by your physician most complications can be avoided.

 

Life is not perfect for him (or us) at this point, but life is so much sweeter than what we had for the seven years before. He has been on oral antibiotics for 10 months and we anticipate he will be in treatment for another 6-8 months. There is an end in sight, but we focus on the day to day, since the finish line in this race can change!

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