MichaelTampa

The key number there is the "absolute" number, which is 59. It is low, and consistent with chronic lyme, or at least severe chronic infection. Disregard the "reference range", as healthy is more 200. Some who use the test believe that if you get to no symptoms and a CD57 of 100 or higher, you're good to stop treatment with low risk of relapse. Yes, 59 is not absolutely horrible. My score was 27 before I began treatment. Quest does not do a CD57 test. Whatever anyone got from them, it was not that.

Oh my goodness, so sad! I started my lyme treatment on IV abx. It was Invanz, but also took orals alinia and tindamax during the same time. It was alinia for 2 weeks, then tindamax for 2 weeks, then repeat, all the while on the Invanz. I had the IV for 2 months before the insurance stopped paying for it. After the two months, while I was still months and months of treatment away from being fully cured (who knows, I'm not there yet), I was feeling much much better by the end of the two months. I was very tired in the beginning, for the first couple weeks, but after that, could see slow and steady progress. I'm not too familiar with the PICC and central line things, but understand the idea of avoiding a situation of it being pulled out. My lyme doc does the IV's a little different than many, I had a new IV catheter put in my arm every week, his theory to avoid chance of infection. You got to do what you got to do! The probiotics are so important during abx! Good luck!

I don't know what standard is. In the beginning, some I would take twice a day, but it quickly went down to one per day of each of the pills I had. I think I took them for about a month or so. I think needs will vary quite a bit by individual situation. I do remember that occasionally early morning these pills would make me quite nauseous.

I wouldn't have expected o&p test to look for yeast. By the way, the almost always show negative, despite the fact that everybody, 100%, has parasites. The tests are a waste of time. If someone has lyme, dealing with parasites/worms and yeast is part of what can be done to improve treatment.

With PANDAS, it's the antibodies causing the problem. With lyme, I don't know if they really know, but I more frequently hear the docs leaning toward it not necessarily being the bugs eating through the brain and causing problems that way, but more toward all the various chemicals (not particularly antibodies) that exist as a result of the bugs being there.

I don't know that everyone does address it. Some just go to LLMD's and some of those tend to focus on the abx. But, reality is, if you have chronic lyme, you have biofilm, and it makes sense to address it at the same time. Without addressing it, it's just harder for the heavy metal detox to work and harder for the abx to work. In some cases, perhaps it could be the difference between successful treatment or not, but it will at least affect how long it will take to treat.

Interesting to see more discussion of this role infection plays. More likely, I think, multiple chronic infection, again, with herpes playing some role.

Are these digestive enzymes.... and how do you dose...before each meal? Well, they are both enzymes, so similar I guess. But, no, not the same as digestive enzymes, these really function as breaking up the biofilm rather than breaking up the food. Generally better to do these on empty stomach, half hour before breakfast, or bedtime, or mid-afternoon, to avoid the food getting in the way.

One way to look at it is multiple chronic infectious disease--mycoplasma, strep, viruses, worms, other parasites, lyme, bartonella, all mushed with heavy metals, weakening immune system, causing autoimmunity, and infecting organs and other tissue.

For biofilms, enzymes are good, like zyactinase, nattokinase, and lumbrokinase. Detoxing heavy metals is important too as part of that picture.

I am going through pretty bad stomach stuff the last few days, as we recently added ketek to my tindamax and factive, and that I think it's finally killing stuff in that area. But I have a different theory on the eating all day. Every time I add a new drug, with lots of fresh killing, I need more probiotics and more minerals, and I really think this is the yeast growing out of control--from the killing of lyme, not just die-off of bad bacteria, because it settles down after a week or two. For example, I am needing much much less probiotics and nystatin than I ever have during treatment now that I am taking THREE abx at the same time. I think this yeast growth causes blood sugar issues, which people tend to interpret as hunger, because you do feel that way. But, the problem can be solved with probiotics and (with meals) minerals supporting blood sugar maintenance (such as zinc, chromium, and vanadium). Of course, eating too much can cause stomach aches, as well.

If you're looking for more testing, IGeneX is one way to go. Probably a lot of LLMD's will respect the results. The other approach is to get an LLMD and then do what additional testing the LLMD wants. Maybe your band 41 positive along with clinical symptoms will suggest a course of treatment without the need for additional testing. Or maybe these things will suggest some specialty testing. It depends on what stage you are in regarding just doing some tests to further consider lyme, or really seeing an LLMD to get their diagnosis/treatment. If you are going to do more IGeneX testing, realize, IGeneX offers a lot of different tests. I think a popular "starter" test there is the "basic lyme panel" (4090), which gives western blot and ELISA. Remember, even the IGeneX testing is not definitive, although at times can be very suggestive.

Since doing that, I have heard that hot water really can damage herbals, particularly those made from leaves, less so for those with just roots. So, there may be some damage there. Still, I found it a useful product. In theory, you could just put it in room temperature water and it would evaporate, it will just take longer. Think about the rubbing alcohol that reeks of alcohol as soon as you take the cover off. That smell is the alcohol evaporating. So, it depends on how patient you want to be. At some point, I would get it close to a boil, pour it in the cup, then let it cool off a few minutes before adding the herbal drops, so that would protect the product some. It's all a matter of how patient you want to be, and how "perfect" you want the remedy to be. I don't know exactly how long any of it takes at different temperatures.

Yes, very good book.

Concord grape juice is great for that, I have used it for myself (not kids), but probably too sweet for you. What else tastes strong? Peanut butter? By the way, I have taken the BLt, and didn't find it that bad really, compared to some other things I've taken. I know the alcohol in there is strong. What I did was heat some water to where it would be almost boiling, and then pour a small amount of water in an empty cup/mug, and then add the drops to the water. The alcohol goes away, I wonder if that might help the taste some. I actually did it because I was taking so much, and other things too, that I was just getting way too much alcohol, which is a no-no for lyme.

Yes, TMJ issues is a symptom for some with lyme. Delicious joint tissue there.

I am guessing the Samento people are referring to is the NutraMedix herbal extract product? NutraMedix makes many, I have heard their Banderol, Lakato, and Houttuynia are also good ones. I have used these, I never tested for using them for very long. Maybe they are so powerful, with other things I'm taking, they are doing the job that they can do for me pretty quickly. I do think they are powerful. I'm currently taking Lakato and EZOV. The EZOV I think is more for emotional/sleeping support, and I take it at bedtime. Normally just one drop for me! Fixit, the noni, I don't remember commenting on it before. But, I have taken it here and there, back when someone thought my problem was (just) bad yeast/fungus overgrowth. It was a little helpful for a while, but no big whoop for me. I still test it periodically to see if it would help me, and the answer has always been no. I do think I have seen it included in some herbal formulas. I'm picking up some of the Byron White formulas tomorrow, and I think their lyme formula (they also have a bartonella and babesia formula) has some noni in it. It is a good overall health-tonic type of thing, but I don't know how special it is for lyme, unless mixed with other items.

I think the reaction your ds18 is having is a big clue of some infection going on, with him and perhaps the rest of the family. I don't know the dosage you are using, but you might consider continuing at a lower dosage. Perhaps the increased tics is from die-off/herxing, and backing off will make it more manageable. I know some have been helped by epsom salt baths as well, perhaps consider trying that, see if it helps. If it's really difficult even at a low dose, I think that just indicates the seriousness of the infection he has. But, regardless, you may want to push any current doctors you have, or find a new one, who can really explore what infection might be going on there.

What I meant regarding the neurologist was, it seems clear your daughter's situation is infection related, and most neurologists just aren't going to be able to help fix that. Sounds like Dr. L. is a notable exception, nothing against him/her, that's great. Perhaps there are others, and if you can find one / luck into one, great. I think once one realizes the problem is infection related, for those who want to really fix the problem (all of us I suppose), you just need to find someone that can address the cause. Neurologists can measure some functions, perhaps some scans, and tell you what's not right. If you want piece of mind in terms of what symptoms there are, in case any are very serious and needing immediate attention to prevent harm before the cause is addressed, that is where they could do some good. Seizures are one example, when you have neurological involvement, seizures are dangerous. Perhaps a neurologist could help determine if there is any likelihood of that, and prescribe something to reduce the chances. It's a personal judgment call regarding if it's worth the time and money to investigate that. So I'll back off what I said a little bit, symptom management isn't the be-all end-all, it's no cure, but it can be important sometimes. But the drugs a neurologist will give, I think, will be similar to the psychiatrist's drugs, in terms of, something isn't functioning right, maybe if we toss this in the mix, the new functioning will be better overall. The combination of these drugs along with a neurological system already bothered by an infection related issue which is causing a unpredictable situation, will result in an even more unpredictable situation, and does have risks in itself. So that decision should not be taken lightly, and should be executed carefully.

I've taken cat's claw and didn't see much from it. But I had a lot of other treatment before that, so less of a reaction would be expected. Fatigue is a common result of killing some bugs. A lot of other things can happen, including increased whatever symmptoms, but fatigue is very common.

Hi Bill. I'm an adult who has likely had lyme since childhood, so I'm the patient and don't have any kids. My lyme doc prescribed IVIG about two months into treatment. I would have done it if it were approved by insurance, but by the time that happened, I had stopped treatment, was feeling somewhat better, and then while I still need to continue treatment, feel that I can win this thing without it. Three months in seems a little early to me, but I don't know how much my opinion is worth, I have never taken it. Sounds like you have seen some improvement but not a way lot, and perhaps the IVIG would really help, if not now, perhaps in another couple months. It's a risk-reward thing, the concerns I had were mostly related to what else am I going to get with all these people's blood. If, in a couple more months, you haven't seen a lot more improvement, I think it will be time to be questioning what is holding him back. Other things you might consider now is more detox and trying to deal with parasites/worms, which many (all?) with lyme have. Word of warning on the prozac, or reminder, if you will. As you assess improvement or lack thereof on the OCD, remember, you are judging where your son is now on prozac, and the use of prozac affects your ability to judge your son's improvement and symptoms without the prozac. This is such a tough situation, I've been there, taken it twice briefly, so desperate would have taken anything to try it, it was horrible so I had to stop it, and then got suicidal on the trip down, which is not uncommon. So, I want to suggest you see if you can do without that now, perhaps the OCD is now related to the combination of lyme plus prozac, and prozac is part of the problem. This disease and that drug are both such roulette wheels, and the combinations are just unpredictable. On the other hand, it is not easy to just willy-nilly lower the dose, and up the dose, and all that. So, don't think I can suggest anything here other than, remember you're giving the prozac and it is affecting him. Good luck!

I don't have any kids, I tried it on myself, and then one other adult I spoke of tried it. Don't know of any kids trying it. It could be something in your house, I suppose, mold, perhaps. But really, if your whole family got a rash, I am guessing that your whole family has a chronic infection that deserves some attention. Yes, I think need for detox and compromised immune system are going to go hand in hand. I the the rash is really detoxing, but the need to detox is increased by killing some of the chronic infection, and you get behind on the detoxing and all that with the compromised immune system from the chronic infection.

yes, you need a doctor, not a neurologist (yes, I know that sounds stupid), you already know it's infection related, all a neurologist can do, if anything at all, is give drugs and make it harder for you to track baseline and get appropriate treatment, as you won't know what is being caused by the neurologist's drugs.

Just in the category of "what to look for", I want to toss out these other things that sometimes come with babesia: - air hunger / sighing - shortness of breath - irregular heartbeat - low iron - pain in bottom of feet any time of day (just early morning is more like bartonella) - drunk/drugged feeling

My goodness, so sorry something is going on here with your daughter here. Gosh, every lyme presentation is different, but you have a number of things here when put together, point toward the need to evaluate lyme as a possibility. Everything you have put in the list can be lyme symptoms, some of them like fatigue and joint pain hallmarks. If the joint pain moves (next week it's the foot or the other knee, or whatever), lyme would be the only known thing to explain that, but even if it doesn't move, that combination of symptoms in such a young otherwise apparently healthy person (if that's been the case) is just demanding of a significant explanation. Gosh, particularly the fatigue, I would think--never had kids, but goodness, they're always so energetic from what I've seen. I remember one doc I had long ago telling me to deal with the fatigue as I was getting older--can't use that line here! The "x-mas coma" is certainly alarming, but not sure what you're really describing. Was she just deeply asleep? Perhaps just from a sugar low? Could it have been a seizure (don't know much about them, other than important to take them seriously)? I think any kind of autoimmunity in the family is another "risk factor" (feels like not quite the right word) in terms of correlation, as lyme can cause autoimmunity in the body and certainly benefits and feeds off of it. The babesia coinfection can come on very sudden, and I think is often the cause of dizziness in those with lyme. But I thought fevers/chills were common with that, don't know if it always happens. I know sometimes there are nighttime sweats. You might consider taking her temperature several times throughout the day for a few days and record that and look for a pattern. Borrelia (the one sometimes called lyme) is said to cause a peak in temperature in mid-afternoon, but it is not always too high then, it's more the pattern. For me, for example, it will get up to 98.5 at the mid-afternoon peak, and then go down to 96 for bedtime and early morning. I have heard a bartonella-dominated lyme would have a different pattern (have it written down somewhere, don't remember), and heard nothing about babesia patterns. But, I'm just thinking, maybe that's something easy you can do, if it is easy, to get maybe another clue. Off the topic of lyme and PANDAS and all that, I've always wondered how many kids just faked illness to stay home from school, if that was common. I can remember doing that a good bit, say you have a sore throat or stomach ache or whatever, and get the day off. In retrospect, perhaps I was a bit worn down or tired and that was part of what prompted the desire. Of course the attention was nicer than what was available at school and perhaps played a role as well.