MichaelTampa

Sure sounds like it.

So much of this is guesswork, but in my view, I've seen the urine dribbling situation increase whenever the toxic metals are at play. This can happen from busting biofilm, or killing parasites. I wonder if the alinia is at play, given that it could be killing parasites. Another thing to be aware of with alinia, is that it has aluminum in it, as part of the coloring (the jerks!). Doesn't mean it's toxic metals in your case, just what I've seen. But you might think about if you should be doing more than you are, regarding chelating the toxic metals (chlorella? EDTA? ...).

I'm not familiar with liquid oxygen, not sure exactly what this is, maybe you could post a link to the product, or explain it a little more. But, I will say, before I knew I had lyme, I used an oxygen concentrator for 2 hrs a day for a couple months. I was wearing a mask and inhaling air that a machine was creating from the household air that had aboug 97% oxygen in it. Similar to buying those 100% oxygen tanks and inhaling from that (not that I've ever done that). For reference, people believe the earth, pre-industrial, had air that was about 30% oxygen, and now it is perhaps 20%, although Los Angeles is maybe 10%, and certainly, over oceans it is more and in big cities it is less. I was doing this to address fatigue. By the end of each session, I was kind of light-headed and foggy-thinking and tired. The timing was normally done in the evenings, just because that's when I had time, so I normally went from there to bed, so it wasn't a problem. If anything, the daziness made sleep come easier. But, looking back, I do feel it probably was a "herx" of sorts, from killing various bugs. So, I do believe high concentrations of oxygen can kill bugs and cause symptoms from that.

Thanks for the quote. I had thought I heard it was viruses ... as this says that "some" nagalase is derived / "some" bacteria create nagalase ... maybe both? I guess it all depends what is the cause in your son's case, and if the xifaxan or vanco will do much with those bacteria. I remember one doc giving me xifaxan and saying it's pretty broad spectrum, used to "clean the slate and start over". Seems possible. I'm not sure if I'd bother testing or not after, depending on purpose of giving these. If it's to treat the nagalase and you might go longer if it's helping, perhaps it's worth testing to see if it did anything meaningful. If it's to treat something else and you're moving on regardless, I'd be more interested in the later outcome a couple months later than right after, to see where you stand after the dust really settles. It gets to the age-old question of testing, are you doing it to just learn whatever you can for possible future use, or to answer a specific question on what to do next...

Not really a facebook user, so I haven't seen that page. Seems to be similar confirmation of how important the adrenals/thyroids can be to getting things working on their own, without the injections. While surprising and good news to see nagalase progress without the GcMAF, in a way, it is consistent with what I believe Dr. K. said once at a conference (if I remember correctly) ... that every 0.1 degree of body temperature increase, the level of infection one has will decrease by about 1/2. So, as an example, if addressing adrenals/thyroids increases body temperature by 0.7 (from 97.9 to 98.6), the result will be infection levels of less than 1% of previous level. Apparently, the bugs can't stand the heat!

Just wanted to update you one where I am with this. Use of GcMAF along with homeopathic nosodes for lyme really wore me down energywise over a period of several weeks, incredible fatigue. After trying years to fix adrenals/thyroids without meds, started on hydrocortisone (low dose) to replace adrenal function, and have energy, and now it looks like HomeoK MAF homeopathic from BioPure is working, replacing the need for the GcMAF injections. That's what I'm seeing after 2-3 weeks. Maybe over a long period, things will be different. It seems to me, the hydrocortisone is giving me the energy to make my own MAF, whereas I couldn't before. When I was doing the GcMAF injections, I needed something like 50,000 - 100,000 IU of vitamin D many days when the injections were given (which was daily for some period of time). The literature describes this as a binding protein, binding the macrophages with vitamin D. So it makes sense that this stuff really uses up vitamin D quickly, as seems to be the case.

Could you send me the name of that N.Falls practitioner you are mentioning? I visit that area occasionally and he could be a good resource.

So sorry about the mess. Dr. Klinghardt of the Seattle Washington area has a lot of excellent non-abx treatment ideas, as well. They have some practitioners trained on his approach in various parts of the country/world. I don't know about Canada, but it is a possibility you could look into. There are other practitioners in his office that go by a similar approach, and I know that at least one does some appointments via Skype, so there is possibility to get a lot of help in this regard. If you're a do-it-yourselfer, there is a lot you can read that Dr. K. has written. But if you want you, you could get it there, or even locally via phone/computer.

You can find it on the internet and read or even a youtube. Various methods, and you will find your own. Key is a cloth, wool or cotton, and good castor oil. The cloth can be bought on iherb.com or at some health food stores. I really think Premier Research Labs castor oil is much higher quality than available in health food stores. It's still relatively inexpensive, as you need a couple small bottles to get started, but then, ongoing, it's a very small amount you need to add to the cloth. Biggest mistake people make is adding too much oil, then it runs out onto your couch or whatever. Biggest trick is finding a way to keep the oil contained and not getting over everything. I wrap well in plastic wrap (like for food), in one piece, around the body a few times. Still, some will leak, and good sturdy plastic underneath to collect, perhaps with an old towel, is important, as some will leak almost all the time. You need a heater like people use to apply heat to a body, to keep the cloth warm for the hour while over your liver. Some heat the cloth in a dish in the oven first. To me, that just gets you another dish and mess to clean, as the heater will warm it up in 5 or so minutes. The used cloth gets saved in a jar in the refrigerator, so taking it out a couple hours ahead of time allows it to warm up first a little bit. These are just my thoughts, they'll probably make more sense after watching/reading about it from one or two other sources, but, like I said, everyone will get their own methods.

How about castor oil pack on the liver? It is thought to really energize liver and get it to detox more. I find this to be great for me. I notice less acne on my back, and much less need for SAMe and NAC (supplements that support detox), when I keep up with these, all clues it really helps with detox. I like to do this once a week, although seems to end up like every other week.

Just in reply to MichaelTampa's explaination of his twitching, DD10's tics ARE accompanied by premonitory sensations. She says she gets a tickle or tingling that will not go away until she completes the tic. I think this may be different from the muscle spasms/twitching mentioned above. I sometimes get muscle twitching myself, but there is no urge involved. DD10 only had the "bugs crawling" sensation once - right before the onset of hives due to an allergic reaction to bactrim, but I have heard that this is a common lyme symptom. Yes, sounds different, for the muscle spasms and arm/leg jerks I'm describing, there is no premonition, no urge, it just happens.

I'm not a child, but I was diagnosed with Tourette's, from symptoms that have been around since childhood, but that got worse following a traumatic event in adulthood. Tourette's is on a list I have seen as common misdiagnoses for lyme disease. Certainly it happens. Referring to TS as a misdiagnosis in many instances is really not quite accurate, as TS is a collection of symptoms existing for in excess of a year, nothing more or less. For people that have that, they have TS, so it's a correct diagnosis, even if it's not a very useful one in many cases, as it tricks people into believing that nothing can be done about it except cope with it, prominently with drugs. This is the agenda of the TS Association, backed conveniently by drug companies. I probably did not have what would be described as a wide variety of tics. In this category, I did have muscle spasms in various parts of my body, and occasional arm and leg jerks, and most prominently the uncontrolled eye blinking that would often last a minute but occasionally 15 minutes. I have had a variety of other symptoms, for sure, including the feeling of bugs crawling, bugs biting, just itching and itching, and the like; these sensations are common lyme symptoms. If you have not heard, you might want to be aware that no rash does not mean no lyme transmission, and that 1 hour is plenty time for transmission particularly if the tic is removed "incorrectly" as then the transmission can happen during removal, and that lyme can also be transmitted from mother to child (happens plenty of times when the mother is not aware she has lyme until after the child is diagnosed) and also from mosquito to person (just in case your child might have ever been bitten by a mosquito). If possible, you might want to take a relook at the Quest lab test for more information beyond "negative". Sometimes the doctor will just say it is negative, because it is printed on the paper, even though certain band results are shown and can be quite telling in some circumstances. Certainly, Quest is not the best lab to have that test done, but given that you've had it done, you may want to take a good look at it and see if there were any "IND" or positive results for any particular bands.

I've heard the grinding is caused by parasites. Regarding the TMJ, it is a minority lyme symptom. The spirochetes love to eat the joint tissue, and the TMJ is a joint, so you might consider it joint pain in that sense. The infections will enjoy any place your body is weak, so perhaps if your jaw is a little out of alignment, then the spirochetes are more likely to set up shop there and cause more problems.

Some docs say this test is inapplicable for those younger than perhaps 13 or 15, as they say people younger than these ages just naturally do not have much CD57, even when completely healthy. I believe I did see one other poster mention a single-digit CD57, also for a child. It's very low, for sure! Perhaps it is inapplicable due to age, I don't really know about that, other than some docs don't use it at those ages, and then others due.

This looks a lot like it is the wrong test, if you were looking for the CD57 used related to chronic lyme disease. Is this from something already ordered? What lab is it from?

Christianmom - we have been replacing carpeting with ceramic tiles. We haven't done any testing yet, but that is what we have done. red - How are you keeping the humidity at or below 50%? I tried to buy a whole house dehumidifier to work during the winter months of the year here in Florida, when the temperature is good but the humidity is still over 90%. I was told by the A/C company, after they supposedly spent time researching it, that they simply didn't exist other than for corporate uses, as they are huge and could not be installed in a single-family home. They said best we can do is get one of those portable type things that need constant attention to empty water, and move through the house, etc.

More bands appear as you treat and get stronger, so, particularly that can happen on abx. The igm and igg for lyme aren't quite the same as in general. The lyme keeps changing so that can affect things, and make it appear new.

I started treatment so long ago with that one, along with a rotation of oral tindamax and alinia (back and forth between the two). I was on it for two months.

It is a matter of degree with all of the tests, in terms of how reliable/unreliable they are. Personally, I used IGenex western blot, and LabCorp CD57 (HNK1), and also had someone familiar with energy testing/muscle testing/applied kinesiology (whatever you want to call it) test me against vials containing the energy of lyme and also a vial with coinfections. For me, the CD57 was low (indicating lyme), my body reacted to the vials (indicating lyme), and the western blot reacted to band 39 and band 41, meaning I had some antibodies against lyme (indicating lyme, even though some people nonsensically think that just showing one or two different types of antibodies against lyme isn't enough to show there is lyme).

My symptoms were different than you describe for your dh, but I believe I had lyme since childhood, with slowly progressing symptoms that got much worse in 2006. I finally got diagnosed, and then started treatment over a year ago, and I am much improved, although still working on it. I am 44 years old now, so I had it for a very long time. I do believe the longer you've had it, the more work you'll have to do (and I've heard that from other lyme docs as well), but it all can be done regardless.

This actually happened to me. I was VERY sick as a teenager - elevated markers for JRA, constant debilitating pain, severe depression, anxiety, chronic cough, visual disturbances, raynaud's, horrible brain fog - felt like I was a zombie. My parents took me to many doctors and found nothing conclusive. After a few years the worst symptoms simply resolved. I don't know why. Then in university I got really sick and felt just like this again, but with additional symptoms like bleeding gums and very swollen glands. I was diagnosed with mono. I got 10 days of amoxicillin and after many months I recovered. Then, when I was pregnant with my first child (PANDAS DS) I got sick again. I felt the same as the previous two times, but this time I had the WORST brain fog, to the point that I couldn't drive, use a bank machine, or basically function at all outside of my home. Very scary. I didn't know ANYTHING about lyme. I chalked it all up to pregnancy, and was not treated for anything. I got (re-?)infected in August 2010. It felt exactly like "mono" yet again, but I had a bite with a red circular rash and classic symptoms of acute lyme (high fever, BRUTAL headache, swollen knee, etc). I made 3 trips to the E.R., thought I was dying. Nobody knew about lyme, and I was told all 3 times it was viral. After 6 months I recovered. I have no lyme symptoms right now. But a main stream I.D. doc told me that I certainly have lyme disease (I'm CDC positive), and it has gone latent. He said latent does not equal gone, and it will likely resurface as heart problems and/or dementia in my later years. Yikes! So I took the 3 weeks of doxy he offered me as a "cure". I didn't have lyme symptoms before I took the doxy, and I didn't have lyme symptoms after I took it. So who knows??? Wow, how interesting! I wonder if the pregnancy and teenager situations both have significant hormones as part of the reason.

I could see #1 happening pretty easily. I had my lyme symptoms go from being nothing so severe to being very severe over a very short time due to a traumatic event. Anything that compromises the immune system could cause that result, and an infection like what you mention is going to make that possible. I would think #2 would be pretty rare. Perhaps a minor temprary improvement, there are always ebbs and flows and so on, but having significant symptoms just go away temporarily doesn't make sense.

I don't know if you'll be able to get this any soon, but two items that have worked excellent for me are "Candibactin BR" by Metagenics and Olive Leaf Extract by Seagate. There are plenty of other brands of olive leaf extract, but I haven't run into one that is any good.

What I've been hearing lately nosebleeds as a child seems to be a lyme symptom. I had them as well, my brother and sister did not, and guess who ends up dx with lyme as an adult, with symptoms traced back to childhood? Three in a day is kind a lot ... are they long and gushy and scary, or just concerned 'cause it's 3? I'd look at it as increase in symptoms that have a good chance of passing over time. Is anything just recently changed with treatment to explain it? If not, I guess you need to be on the lookout for another cause. Only exception is, like any exacerbation, if it's dangerous (too many, too long, too much blood, etc.), then backing off would make sense. In the meantime, I'm gunna suggest more protein as a possibility to consider, and also consider getting off any blood-thinning things (such as fish oils).

Get it right, treat the bite! Cost of treating later if lyme did get transmitted are enormous, take a chance at preventing that and treat it now seriously. Given you have PANDAS in the household, and the relationship between lyme and PANDAS that some are finding, it is also possible that he had lyme since birth and treating the bite now will cause a slew of symptoms as a reaction caused by the existing lyme being bothered by the treatment, something to be aware of the possibility and on the lookout for if you do treat now. https://sites.google.com/site/getitrighttreatthebite/ticks/treat-the-bite