what level of success have you achieved?

[FallingApart]

Hi there,

 

We are seeing an LLMD that I feel quite comfortable with. However, we are also seeing other practitioners for other things as well and I am also comfortable with them in their area of expertise. In the past couple of days, it has been brought up that perhaps DD and I should be farther along in our progression through the Lyme journey. Our LLMD will not give us a clear answer on if or when we will be better. I understand her point of view, but I have been in bed for the past 4 days with nausea and vommitting and am starting to wonder if I am just paying large amounts of money to feel even worse than before we started seeing the LLMD.

 

Other practitioners have weighed in that one is never cured of Lyme and you only learn to live with the disease. Even though I have never met any of you, I trust you all. Can you tell me where you are regarding your success level with Lyme treatment? DD got better for the first month and has since been in a 3 month funk/herx/whatever. She has just been a bully and v difficult to be around.

 

I do still believe strongly in what we are doing, I just need some reassurance.

[LNN]

I don't know that my answer will give you the reassurance you want. We were on the Pandas trail for 2 yrs, and now on the lyme/bartonella path for 9 months. The first 3 months of treating for bartonella were awesome. No herxing, just swift improvement. Then DS stalled. When we started attacking the lyme (with omnicef and tindamax), he had a horrible, 2 month long herx/pandas-like flair. We stopped the tindamax and he stabilized. So it tells me there's probably a lot of cyst-lyme due to so many years of abx. But something was being a roadblock that kept his body from being able to handle the herx/inflammation. So we're now looking into mold (but his blood work is only slightly suggestive and we don't have an obvious mold issue) and into KPU. He's been off of all supplements and vitamins for a week to do a urine test and he's deteriorated significantly (return of OCD, quick tempered, loss of impulse control, very immature/silly). So I'm thinking we have a clue and am expecting the KPU/metals investigation to show he has issues there. I'm also looking into anti-inflammatories, as I think the cytokine issue is huge for DS.

 

So ours is not a slam dunk, do one protocol and you're done sort of story. BUT we are further along and DS is better than he once was. The "peeling the onion" analogy is probably over-used, but it does seem to fit our situation. I hope against all hope that we're close to getting to the bottom of things. My best advice is to keep track of everything - how you feel is a message. If something isn't working the way it "should", it seems to be a sign that something else is at work.

[NancyD]

It took me about 5-6 months to feel better. I was in bed for the first 2 months and really dragging the other months. I would say adding Tindamax definitely made a huge difference. DD, on the other hand, made a quicker recovery from many of the Lyme symptoms I was experiencing (fatigue, joint pain and stiffness, brain fog, etc). What we have not been able to help much has been DS's high anxiety and OCD. Switching to Rifampin and Biaxin helped a little but then a few weeks later we had to add levoxyl for thyroid and (perhaps coincidently or not) her anxiety and OCD got worse. We'll know better shortly after eliminating levoxl but we will also have to switch off Rifampin because DD's liver function continues to elevate. I don't think a few months is long enough especially if there are co-infections.

[sf_mom]

Lyme treatment is rough. I got lucky and also felt much better fairly rapidly. When they started treating me for Babesia last Feb. it felt like it was a huge set back. Today I only have two predominate symptoms of swollen lymph nodes along bikini line/neck 'ache daily' and afternoon fatigue. No more knee, hip, hand, back, thigh pain, numbness, etc...... fingers crossed!!!! We are focusing on drainage and anti-viral protocol to help with remaining symptoms. I do believe the 4 viruses that I am positive for present a real problem in dealing with the Lyme. My fatigue is no longer a daily event. When I feel better, I feel better than I have in years. It has definitely been worth the process.

 

Older DS is currently 98% in remission of all symptoms and holds fairly steady there... day dependent of course. Our family is enjoying the moment as we prepare to change protocol after our guests leave for the holiday. He is currently being treated for KPU and the herx is anticipated to occur between 2 to 6 weeks so I am waiting, waiting...... We are also rotating antibiotics to treat babesia over the next two weeks. I've been given estimates of 4 months, 8 months.... to a year to treat. I have a feeling we'll be on rewind shortly here for older DS.

 

Younger DS is going through a rough period. We recently added new anti-viral protocol and supplementing lightly with 1 'CORE' pill a day...... Since changing these two things we've been managing a lot of mood liability and are contending with OCD blips/flairs. He has very high Coxsackie's titers and we are assuming XMRV as well since two individuals in household are currently positive.

 

Younger DD is also doing well. Her only symptoms are rashes and dark circles under her eyes....

 

Overall its been very worth the treatment process. It is rough though.... as they do not magically improve like we anticipate. There are herx's that can bring you to your knees with worry and last months. BUT, I've also had symptoms magically disappear within 48 hours of an antibiotic rotation.

 

Its a long process and takes the average child two years to recover. Adults I believe are similar depending on how long they've been sick. Most LLMD are only looking for 2 good days in the first 6 weeks of treatment. If you can hang onto the idea of those good days and know that someday you can feel like that most days!!!!!

Edited July 1, 2011 by SF Mom

[MichaelTampa]

I am now 15 months into treatment that has been VERY aggressive, trying MANY things, using energy testing to weekly monitor what is successful, what is not, what needs to be added to help (whether it's detox help or bug killing help or whatever). I am much much better, I am at the point where I could live my life like this if I had to and I guess it would be okay, don't think I have said that to anybody yet, but I think I realized that a week or two ago. I do still have some symptoms, maybe at 95% better or something like that. (Of course, our society no doubt has more wireless signals planned, pressuring me to stay ahead of the curve--nothing ever stays the same.) I do believe this aggressive approach has made a huge difference in timeline and in how I have felt throughout the process.

 

I have heard estimates for treatment length of 3 months for every year of illness before treatment, and even as high as 1 year for every year of illness before treatment (meaning I would need about 40 years of treatment!). I have read one prominent ILADS doc giving a talk and saying 95% relapse after abx stop, and so that concurs with your doc's grim assessment that all we can do is just manage the disease. I think that is wrong if it is truly treated well, but it is probably right for how most docs, even ILADS trained, really treat the disease.

 

Once we are really sick with lyme, there is so much more than borrelia going on here that really needs to be dealt with for a real lasting cure. The lasting cure does happen for some people, but most will have to do many things, really work at it, go well beyond borrelia/bart/babs in treatment. As 90% of the cells hanging out in our body are non-human, I think it is unrealistic to think we can get rid of every borrelia/bart/babs organism, but don't think it's necessary to do that to be cured. I believe that about half the population has borrelia infection, the western blot band 41 positives say so for those willing to believe the chemicals used to run the tests are unbiased, so I do not think a few borrelia bugs in the human body has to mean we are sick and constantly needing effort to manage that situation (other than normal good taking care of one's body that anyone would need to do).

 

I do believe Dr. Klinghardt stands almost alone (or maybe truly alone) amongst those in the lyme field in terms of truly getting the cause of the situation, and finding all the aspects that need treatment for true health. I would encourage anyone concerned that they are not on a trajectory to getting fully through this to access more of this teachings. If you can find a Klinghardt-trained physician, as spctmom mentions the possibility in her recent "ART" thread, that should be wonderful. If not, accessing DVD's of his conference in May could allow you to see what you might be missing, and put you in the position of at least knowing what to look for in successful treatment.

[sptcmom]

I am now 15 months into treatment that has been VERY aggressive, trying MANY things, using energy testing to weekly monitor what is successful, what is not, what needs to be added to help (whether it's detox help or bug killing help or whatever). I am much much better, I am at the point where I could live my life like this if I had to and I guess it would be okay, don't think I have said that to anybody yet, but I think I realized that a week or two ago. I do still have some symptoms, maybe at 95% better or something like that. (Of course, our society no doubt has more wireless signals planned, pressuring me to stay ahead of the curve--nothing ever stays the same.) I do believe this aggressive approach has made a huge difference in timeline and in how I have felt throughout the process.

 

I have heard estimates for treatment length of 3 months for every year of illness before treatment, and even as high as 1 year for every year of illness before treatment (meaning I would need about 40 years of treatment!). I have read one prominent ILADS doc giving a talk and saying 95% relapse after abx stop, and so that concurs with your doc's grim assessment that all we can do is just manage the disease. I think that is wrong if it is truly treated well, but it is probably right for how most docs, even ILADS trained, really treat the disease.

 

Once we are really sick with lyme, there is so much more than borrelia going on here that really needs to be dealt with for a real lasting cure. The lasting cure does happen for some people, but most will have to do many things, really work at it, go well beyond borrelia/bart/babs in treatment. As 90% of the cells hanging out in our body are non-human, I think it is unrealistic to think we can get rid of every borrelia/bart/babs organism, but don't think it's necessary to do that to be cured. I believe that about half the population has borrelia infection, the western blot band 41 positives say so for those willing to believe the chemicals used to run the tests are unbiased, so I do not think a few borrelia bugs in the human body has to mean we are sick and constantly needing effort to manage that situation (other than normal good taking care of one's body that anyone would need to do).

 

I do believe Dr. Klinghardt stands almost alone (or maybe truly alone) amongst those in the lyme field in terms of truly getting the cause of the situation, and finding all the aspects that need treatment for true health. I would encourage anyone concerned that they are not on a trajectory to getting fully through this to access more of this teachings. If you can find a Klinghardt-trained physician, as spctmom mentions the possibility in her recent "ART" thread, that should be wonderful. If not, accessing DVD's of his conference in May could allow you to see what you might be missing, and put you in the position of at least knowing what to look for in successful treatment.

 

 

VERY well put Michael especially about Dr Klinghardt. After researching LLMDs at all levels like I have never done for anything before in my life, personally, professionally, medically, reading their methodologies etc etc I decided to train with Dr Klinghardt. We did see two other renowned and brilliant in their own right LLMDs and it was tremendously helpful but like many parents here we stalled and plateaued with unexplained blips.All until my training was complete with Dr K himself and I successfully incorporated his teachings into my son's treatment and achieved a miracle of sorts. Addressing the fourth level of healing has been THE single thing that has by far worked the best for DS.It brought together all he other 3 levels and level 5, DS is handling on his own.

 

Subsequent phone conversations with Dr K continue to inspire me and help me further refine my treatment protocols. I never would've believed this was possible last year when we were struggling with "turning back the pages" after hd IVIG.

Due to Dr Klinghardt's knowledge, blessings and ongoing stubborn, singleminded research into this, I am now able to help so many other children in my practice. Extremely humbling experience, being in his presence, listening to him speak and stand alone amidst so many nay sayers. He's the man as far as Im concerned. So genuine.

 

The key here is that he is the ONLY LLMD who gets adults and he gets children, gets children with multi neuro issues and can treat each one for itself and synergistically with other neuro illnesses. I found myself to be the only practitioner doing pediatrics during training and he was too. He was excited and happy to share his knowledge, train with me for peds aspect and how to tweak ART for peds issues (ADHD, freq breaks etc), answer all my questions on multi neuro protocols etc. It was wonderful to learn from him. being able to deal with Autism and handle associated PANDAS, Lyme and Co is a fine line, a skill that Dr K is unparalled in and thats what sets him apart.

 

Having seen and still consulting with two world class LLMDs I found each to be brilliant in their own field of Lyme and co with a serious lag in the understanding of associated neuro diagnoses in my child.The standard answer has been once the underlying infections are cleared, the other issues will be easier to handle. I find that hard to digest. Aspergers, myco HHV6 etc all have a seperate yet gestalt effect on my child. The "peeling of onion" for him maybe peeling of three different kinds of onions. No one was able to tell me how or help me with stalling other than mild tweaks of dosages etc.

True results were achieved when I started understanding the intracellular biochemistry of these illnesses and how they are so different but so similar at the matrix and cellular levels AND psychologically too.

 

One can't use popular lyme herbs etc for children who also have autism, atleast not in the same way, the same applies to other herbs, homeopathics and supplements. The seven factors of pathology in a child with ASD +PANDAS+ Lyme will be different from a child with only lyme and co. Understanding of the underlying brain and body physiological processes, neurotoxin interaction, neurotransmitter depletion as it applies to each condition, gut dysbiosis, biofilm can all be unique to each neuro condition and each child. treatemt needs to be geared to each child's assessment of the seven factors and synergistically adding healing remedies.For example- Hypothalamus and limbic system needs to be focused on and addressed first in children who have ASD plus etc and not always in children who have only Lyme and co., esp those who manifest with motor tics and less psych issues.

 

DS is doing very well. I have stopped using percentages to gauge his improvement. My son is now whole, mentally and physically. He is in touch with his Energy Field, is making good decisions, is mature, not a single sign of Aspergers, clarity of thought and comfortable in his own skin and is actively involved in his own healing. We are thankful to lyme disease and PANDAS and etc for having shown us the way to a better future for all of us. We have come closer as mother and child. I have matured, healed my own congenital and hereto unknown TBDs, forgiven members of my family, forgiven myself for being a harsh/strict mom,and feel closer to God as well.

There was a reason beyond our reach ad understanding why all this happened to/is happening to us. It has been a devastating but maturing, humbling, and educating experience

 

The power of positive thinking has been instrumental in our healing.

 

There is no cure. Just making our peace with the microbes, changing our internal biochemistry to reeducate our immune sytem and have our immune system be in charge. Changing abx, rotating, etc is good for reducing the initial microbial load. The microbes attach to our very DNA, hard to detect and they can morph raidly to escape WBCs, and abx. Abx, IVIG, PEX, steroids etc etc can never win.The real cure is life style change like Michael and many others have achieved, staying ahead of the game and teaching our children good nutrtion and the same.

I find that instead of focusing on Kill kill kill the bugs, if I focus on heal, heal heal the body, it works much better for my family and my patients. The body is already innately programmed to seek to heal itself and exist in synergy.

Just my opinion and experience.

Edited July 3, 2011 by sptcmom

[lmi1973]

Wow, that was really inspiring to read that sptc and michael. I am really interested in/trying to learn more about Dr. Klinghardt's theories. My son's LLMD, although he had never heard of it, agreed to Rx BEG spray for known marcons and ordered at least the MSH testing, which hasn't come back yet. His LLMD isn't world class or well known, but, is very open to different treatment options and suggestions. I printed off info. from Dr. Shoemaker and the Klinghardt conference prior to our appt. last week and gave him copies and he genuinely seemed interested and thankful for the info. vs. offended.

 

Although very overwhelming at times, I feel that in order to get better, we do have to understand the underlying processes of the body and what isn't working & sort of become our own children's doctors in a strange way. That's a pretty steep burden on top of dealing w/everything else that comes w/these diseases/disorders. But, we aren't really left w/any other choice if we want to truly heal them. We have made a lot of healthy changes in the last couple of months, but, there is so much more we can do. I want a quick fix as much as anyone, but, the more I read/learn, the more it seems that it isn't possible. Just like there are no quick fixes to losing weight - it's a total lifestyle change that has to be maintained/embraced.

 

I have SO many questions, but to start:

1. Do you have any recommended reading (is there a book by Dr. K)?

2. How do you train w/Dr. K, are you a medical student?

3. Do you use the "lyme coctail"? If so, do you go off abx while using?

4. My son has known anaplasma, lyme, mycoplasma, standard tests for other co-infections have come back negative. Do you think it's necessary to do Igenex to completely rule out other co-infections or just focus on the infections/issues we know about right now?

5. Is it good to take off abx or reduce abx while herxing to give the body a break?

 

Thanks so much,

Laura

[MichaelTampa]

I think it's great you're looking into these things, and good your doc is open trying to help. Yes, it sure is tough sometimes trying to play doctor along with dealing with the condition itself, but it seems to be the reality for many of us. Here are my thoughts on your questions, some of them I don't really have a lot of experience to give me a full perspective on them.

 

1. I haven't looked much into reading Dr. K., but someone told me recently they had read a book of his, although it wasn't on the lyme topic. The lyme field is developing so quickly, though, any published works are going to be out of date. But you can find some things on the klinghardtacademy.com website, such as the "5 levels of healing". I think the closest thing to a book of his thoughts on lyme really is the DVD's of his conference in May, "A Deep Look Beyond Lyme". I went to the conference thinking I knew most of his protocol, but expecting to learn a little detail here and there, and was blown away with the amount of knowledge I had no idea about. Just now going through the DVD's and learning many more things I probably quickly forgot. They are simply packed with info, some ideas will resonate more when one is at the stage where it is relevant.

 

2. Hopefully sptc can answer this one.

 

3. I personally haven't used his lyme cocktail idea with the bunch of stuff in it. I ran into his idea of this fairly late in my treatment where perhaps it would not make as much sense. That idea of his is one that has always seemed a little off, at least for me, as my body tends to not want bunches of stuff all together; rather, it prefers things separately. I have used abx through most of my treatment, though am off them now and may be done with them. I have found the abx+herb combination very effective for me, I think much more effective than either one separately could have been. Dr. K. seems to like to avoid abx as much as possible, using it later on as necessary, focusing more on parasites first; in general that seems a wise approach if progress is fast enough for the situation. Theory makes a lot of sense, but really I have no experience seeing how that goes. I started out with abx early on, really was in a hurry for some healing to keep my job, and was not even aware of his theories at that time.

 

4. I'm not a big fan of the coinfection tests. I don't know how useful any of that is. If one is playing the abx roulette guessing game, the common guesses from that have historically been based on symptoms (and what coinfections people conclude you have based on symptoms), since the tests are so unreliable anyway. If one is using energy testing, then use that to see what coinfections are issues and use that to determine treatment. I really think the energy testing diagnostics are more useful than the labs. In the end, if you're seeing good progress, that's great, if not, time to do something different with treatment. Probably a case could be made for more labs if one really keep struggling with a few different attempts at treatment, particularly if there is no access to the energy testing (such as Klinghardt's ART).

 

5. Ideally one uses a dosage and has detox/drainage strategies so that herxes are limited or at least bearable. On the other end, abx needs to be stopped sometimes to avoid killing the patient; I hear LLMD's are occasionally faced with making that type of decision, hopefully those are very rare situations. My intuition (I think that's what it is, just a patient with my one experience) is that steady is generally better to win the race, and if this were happening to me, I would look to reduce dosage or increase detox/drainage as an alternative to needing to take regular breaks. But, I can see how a drug might get started, things might go crazy, and a break might be necessary at least right away to give time to evaluate the situation and make a plan.

 

Michael

[tpotter]

For those of you battling elevated liver enzymes, consider IV abx. It's a pain in the neck (we are on our 2nd month,) but the liver enzymes came way down immediately (not completely back to normal, but we are also doing milk thistle and ALA, and at least the liver enzymes aren't going in the wrong direction anymore (they are now below 100.) We do it through homecare...they showed me how to hook him up. Unfortunately, he can't swim, run, sweat, shower, because he can't get the picc line wet, and it is summer vacation, but considering he was so sick that he missed almost the last month of school, I am not sorry we are going down that path.

 

DS15's gastroenterologist and LLMD were not surprised when the liver enzymes came down, because IV abx is not processed through the gastrointestinal system.

 

Just a suggestion to consider (I don't mean for everyone to switch to IV abx...there are inherent dangers. But, it is a consideration.

[sptcmom]

well, ART practitioners usually don't rely or need expensive blood tests anyways.

I agree with Michael on the testing for coinfections.

I do recommend doing Bartonella and Babesia though if you don't have access to an ART doc.

 

Based on my learning the recommended change is to go down to 1/10 th the dosage of the allopathic abx or herbal abx that cuased the herx when going thru a severe herx. Donot stop or cease alltogether.

 

One needs to go with gentle and elegant holistic treatment methods for kids after all the abx, IVIG, PEX, steroids etc many have been on. Their guts are destroyed, or atleast harmed even if probio was being done. Need to rehab liver, gall bladder, spleen, and gut with homeopathic remedies. Aggressive is good up a point where we can keep the future long term impact of these abxs on our internal health.

[MichaelTampa]

For those of you battling elevated liver enzymes, consider IV abx. It's a pain in the neck (we are on our 2nd month,) but the liver enzymes came way down immediately (not completely back to normal, but we are also doing milk thistle and ALA, and at least the liver enzymes aren't going in the wrong direction anymore (they are now below 100.) We do it through homecare...they showed me how to hook him up. Unfortunately, he can't swim, run, sweat, shower, because he can't get the picc line wet, and it is summer vacation, but considering he was so sick that he missed almost the last month of school, I am not sorry we are going down that path.

 

DS15's gastroenterologist and LLMD were not surprised when the liver enzymes came down, because IV abx is not processed through the gastrointestinal system.

 

Just a suggestion to consider (I don't mean for everyone to switch to IV abx...there are inherent dangers. But, it is a consideration.

 

Gosh, no shower? I have IV abx for two months, bought something for like $30 from a pharmacy to cover the arm, and was able to shower while keeping it dry, although it was a nuisance. I did sweat just a couple times, and it was not disastrous, but it was very uncomfortable right where the bandage patch was, as the sweat was probably stuck there underneath. Interesting about the liver enzymes, was not aware of that.