MichaelTampa

Higher doses are potentially helpful during a herx, as are other detox things. I take fairly low dose, 10 tablets daily. In this world we are constantly exposed to a variety of toxins, so low-dose detox is probably a helpful thing for most, even if not sick.

Yes, diet can be important. Food allergies/sensitivities need to be addressed in some form or fashion, and avoidance can be important, although taking steps to eliminate the allergies is powerful as well. I have heard very low fat can help, the bugs use the fats. I have heard high protein can help. With lyme almost always (or maybe just always?) there will be severe fungal infection, and no sugar no sweets no fruits etc can really help with that situation. Restriction of carbs may even be necessary for a while, I ate very low carbs in the beginning stage of treatment, for a few months. As a vegan, this was extremely difficult, but I think worthwhile. Really depends on how bad the fungus infection is. It really is individual what will work best. I am moving along nicely in treatment and am eating plenty of fats. About 1-2 months ago, my body started demanding much more protein, in form of foods and supplements, so I am giving it that. I am a vegan and so high protein pretty much goes hand in hand with high fat, and lately I have even added the fake meat junk foods for their protein content. Not aware of any books on lyme diet, but Cure Unknown is excellent for background on the disease and political/insurance/medical situation surrounding diagnosis and treatment.

Just as something to toss out as a possibility, directlabs.com is a place where you can get a doctor's order for lab tests, but at LabCorp only. You pay directlabs and then they pay LabCorp. I think CD57 is something like $132, so definitely not as good as through a regular doctor with insurance. You probably could get the western blot from LabCorp that way too, not sure cost, and, of course, not as good as IGeneX. Not sure this really makes sense for your situation, but just tossing it out. What about, is there an NAET practitioner in your area that might get the lyme and coinfection vials and do energy testing. If you would find that meaningful, that's something probably a bit cheaper to give you some information. I tested as "allergic" to borrelia and bartonella, just coincidentally what my blood testing and clinical evaluation led my llmd to diagnose me with. And "parasites" also came up, a big problem for probably everybody with lyme.

Good job mama2alex for noticing those red flags in the initial post there. momcap, this doctor just isn't going to cut it for your situation, he is just no educated enough about lyme, no other way to say that more plainly. Given you're in Canada, perhaps there are problems finding a good lyme doc. If so, LLM's suggestion is a good one, at least to give you an idea of what's out there, what to look for. There are herbal treatments that you won't need a doctor to do, and could perhaps help you feel more confident lyme is the issue, as you seem to consider that in doubt at this time. The reaction to the herbs might be helpful to see. ILADS does give referrals to lyme docs, I don't know if they have any members in Canada, but you should ask them. Also, you might try lymenet message board. They have a doctor referral section of the message board, and, while I think this is an excellent group and board here, lymenet has many more people and thus a better chance of having someone who knows a doc in your area that can help you. Keep at it. You're almost there, believe it or not! Michael

Is his total lyme treatment just tindamax on weekends? Are you seeing any progress after 6 months, or really no difference?

I had tics and other muscle spasms that went away with lyme treatment.

Similar results to mine and lyme treatment has been the magic answer for me that unfortunately took decades to find. The band 39, based on a survey of population with and without diagnosed lyme, is the most specific for lyme of all the bands, whereas band 41 is the least specific. The IND for 39 is saying a lot.

The Burrascano guidelines on the ILADS site suggest adding hydroxychloroquine or amantadine to zithromax. The amantadine does something specific to help the zithromax, it may be pH related, I don't remember. At one point my llmd was going to give me amantadine along with zithromax. At the last minute we changed direction a little and it changed to ketek (telithromycin) instead of zithromax and then he said I didn't need the amantadine with it. You will not the Burrascano guideline comments are very consistent with that thinking. I think it changed for me, for some reason, we decided to go with factive (gemifloxacin), a 4th generation fluoroquinolone (more well known is levaquin, a 3rd generation f.q. for bart). Factive treats bart and borrelia, and perhaps for some reason the addition of factive meant that the switch from zithromax to ketek made sense. So one thing to consider there is either adding amantadine or switching instead to ketek. But you are also missing is a cyst buster such as flagyl or tindamax. All of the different combinations discussed/used for me above included tindamax. Of course GSE is known to be a cyst buster, too, although very caustic. These guidelines are a fairly rare source of recommendations, at least somewhat up to date. They are getting a little old, note factive is not on there, as Burrascano has not been treating for a while now. But, still, a bit of a treasure for those trying to go at it without a truly experienced LLMD. I suggest you read them several times. http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf

I think she was saying TBI, which is tick-borne infection (such as lyme). I'll PM you regarding LLMD's in Florida.

I haven't used the coconut water, but have used coconut oil regularly for a while. While the list of good things it does is long, I never got the sense of it doing that much. Perhaps it does a lot of nice things, but not very powerfully?

The combination of your symptoms and kids' situation would strongly suggest lyme treatment for you. Not sure what the reason would be for testing, I would think treatment would be justified regardless of any test results. Can you just go to the same doc you're using for the kids? If so, I would get to the doc and ask for treatment, let the doc determine if they think any testing is needed ... perhaps related to coinfections, perhaps not. Yes, could be herx.

I think the western blot adds to the information you have, so it's something that is probably worthwhile. The IGeneX is more expensive but tests more relevant bands. If they have some symptoms and a test indicates signs of lyme, I would think treating would make a lot of sense. By not treating, more likely than not it will just progress to be more serious over time, making treatment more difficult later. At least for the teenagers and adults, adding the CD57 from LabCorp also probably makes a lot of sense.

Yes, given what you say there, sounds like a good next step to investigate TMJ area and possibly something to move jaw/biting to slightly different location.

DGL is deglycerized licorice, spelled something like that, very good for healing gut tissue. I've been taking the xymogen product GlutAloeMine for a very long time for this, has L-Glutamine, Aloe, DGL, and arabinogalactin (a prebiotic). All of these things can help. Watch the L-Glutamine, it is an excitatory which means could cause wild dreams if taken at bedtime (I've experienced this), and even seizures in some with predisoposition to that, such as those with lyme.

Symptom resolution is key, yes, clinical recovery. A couple thoughts to toss in. For those monitoring with CD57 before and during treatment, this can help gauge also. Getting back to healthy levels--200--or enough to maintain recovery--150 or perhaps 100--is another sign you're in the right place. Some people find this test doesn't tell them much, and for young kids we hear that. But, for the many who it works for, it is something to add to the picture. Myers Cocktail contains vitamins and minerals, given in IV. Vitamin B complex, vitamin C, and a variety of minerals. It's a way of getting good nutrition into your body where it can actually be used, can really help.

Borrelia is supposedly 4 weeks, the other ones are shorts. Bart is something like 1 day, babesia 5-7 days. But Borrelia can be longer or shorter, perhaps the 5 weeks is still borrelia. It can track people's hormone cycle (men or women).

I am guessing these are aimed at borrelia (lyme proper) and not the coinfections? Borrelia relapse is frequently slow, as their life cycle is roughly 4 weeks. So, 3 days off would not necessarily make a big difference in terms how she feels. That said, I have started taking weekends off abx and the first two times, the Sunday and then Monday were a bit rougher than normal. Now, I am treating lyme and bartonella, so that could've been the bartonella coming back quickly, which it is known to do. It is always possible the abx have done what they're going to do for her. Aside from energy testing that, the big question is, are symptoms continuing to get better or not?

Just as an FYI on the cholestryamine, I know the normal stuff comes with sugars or fake sugars, and probably artificial flavors as well. It can be gotten compounded, that's how I do it to avoid some of those things. Still expensive either way, at least can be covered by insurance too. I think the MicroSilica is good as well, unfortunately also expensive.

Mold can cause many of the symptoms that lyme causes. And of course, nasal issues and allergies, yes. Perhaps it won't cause the joint and muscle pain, don't know about that. For those with lyme, it will be very difficult to have successful treatment without dealing with the mold issue. Cholestryamine is an Rx that is good for removing neurotoxins caused by mold. There are other non-Rx things that can help as well. So taking some things can help, but in the end, you have to find a way to remove the mold and fix the house so it doesn't happen again. There are specialty mold remediators. This work is very delicate and needs to be done the right way. There are books on the topic for those who can't afford to pay someone. Molds are fungus, and perhaps some antifungals will help. But it's much more about "just" removing the exposure than taking a lot of complicated stuff to "kill it" like is needed for the lyme bug itself (borrelia). Yes, it gets hard with all these things to deal with sometimes! Michael

Do you mean, you're looking for something to give to DD that will help like milk thistle does, because she is allergic to ragweed, and so you are avoiding milk thistle for her because they are similar? Not really sure if that's your question, but I have heard SAMe is good for liver also, I think I ran across one other thing very good for liver too recently, but don't remember what it was.

Yes, it can be a clue for sure, if the symptoms fit as well.

Goodness, now that you say that, it sounds vaguely familiar that I had seen that, probably a previous post mentioning the canlyme reference. I can't find it now, but think I looked at it last time. It wasn't clear to me if that applies to tindamax or not. Yes, they are similar, so it might. I took milk thistle briefly for a few days a week or so ago, but think several months ago that I was on it a month or so while also on tindamax. That is going back a while so I really do not remember for sure. I do energy test these things, and lately the milk thistle has tested as a no, for whatever reason. I think this is going to be an individual thing--how much is it hampering the flagyl/tindamax, how badly does your liver need the milk thistle--questions like that. If you mix them and still have progress, then good. Do you have tests showing you need milk thistle--blood tests of liver enzymes, or energy testing as good? Either of those tests might be the best way to really answer the question for a specific person.

And another possibility is structural issues. I do think that is why some kids get tics and then they go away without treatment as they get older. Teeth and bones in head are growing at different paces, which can put pressure on TMJ, causing tics. There are some who have had very successful treatment from TS dealing with structural issues. Of course, it can be tricky to figure out if structural issue is the problem for any given person. The TMJ/dentists can look at jaw alignment related to TMJ. But there are other issues, for example, if the spine gets curved some, that can have repurcussions into the neurological system as well and cause tics. There is a place local to where I live that specializes in doing this type of work, not focused on TS per se, but fixing alignment to remove whatever problems that causes, and have trained people in other cities on this method. Of course, like anything else, this approach does not help at all if it is not the source of the problem.

Unusually angry and difficult counts as herxing for sure. As I don't think people really know much about what the rash is, I'm not sure they'd officially call it herxing, but do take it as a sign that the treatment is having an impact, which, in the beginning, is what we look/hope to see.

Another possibility is lyme disease. There is a lyme forum on here where you could get more information. Lyme disease sometimes progresses very slowly and sometimes very quickly. People infected for years would typically have many symptoms. However, frequently people do not realize they have all the symptoms they do, as they get used to them, they think it is normal part of aging, and so on.