lyme_mom

Treating lyme and other tick borne diseases is clinical-educated guesswork. The blood testing is not reliable and symptoms are what lyme specialists use to guide their treatment. SO, having the ability to do muscle testing can give you more information that may help your treatment or give you info that you have not considered. I think of it as another hunch or another light in the darkness illuminating the path. I was not looking for proof it worked b/c I just wanted some more intuition that we were doing the right thing. It can be more reliable than blood testing too...For example, my son did not test sensitive to peanuts on the blood test but he tested sensitive on the muscle testing b/c the nuts probably have mold in them unlike the pure nut samples in the lab. At various times one or another medication was not "good" for him. For example his muscle testing said samento was good for him, as was doxy, but NOT both together. See what I mean? After doing enough muscle testing and being cured of my allergy to my dog in one visit with my chiropractor (using muscle testing and light therapy) I am convinced it really works. It can calm the body's response to the family's dog or to a lyme med that the patient may benefit from but be sensitive to. Also, it can't hurt so I was willing to give it try b/c we were really sick. I'd like to learn how to do it myself. You know that feeling you get when you don't want to eat something? That is your body telling you something. If you can be more in touch with that instinct you can learn a lot. Someone told me you can put the pills or substance under your arm and then try and then take your thumb and pointer finger and interlock them on both hands so that you have two loops hooked together (left and right hand pointer/thumbs looped together) and then pull a little. If your fingers come apart fast the substance is not good, if your hold is strong, it is good. If you do a while you apparently get the feel of it.I think you need to rub your hands together beforehand. I have forgotten the exact instructions. THere are many ways to test. Every practitioner I have been to uses muscle testing (except my llmd). I am convinced it offers another tool for healing. It works so well that we got a second dog and I was desensitized to it too and have no allergy symptoms. I was not about to take allergy meds for the rest of my life just to have a dog and there are tons of studies about the allergy drugs :-) but I didn't want them.

:-) I thought my periodic fatigue was b/c of aging and motherhood but it all went away after lyme/babesia treatment. Good luck with your treatment -if it is lyme you can feel great again after treatment.

Did you all notice that the news reports say that the mother who reported her son kidnapped recently (whose story the Police do not believe and which sounds like a law and order episode) suffers from severe OCD. http://www.thenewstribune.com/2011/11/12/1902833/car-trouble-story-doesnt-add-up.html I heard them talk about it on the news last night and some psychological expert said that the mother loved her ocd more than her child b/c she was always cleaning obsessively. Clearly that expert did not know about the link between ocd and rage and other psychological issues. I bet she has some infection and doesn't know it.

Those are some significant Lyme bands. Was this done by Igenex? If not u could have other bands too (31 and 34). The most worrisome thing to me is the extremely low vitamin d and cd57 counts. Sure could b Lyme and u dont need to have a history of a tick bite. Most of family did not and i NEVER see ticks. Mosquitos carry lyme too and we get plenty of mosquito bites.You dont have mold in ur home do you? I've heard it can suppress ur cd57 count too and the fact that u all r so low would make me want to check out mold too (but that's my non expert opinion.) mold suppresses the immune system and is not easy to spot. The adult cd57 scores are reason enough for a trial treatment along with the Lyme specific bands. In kids cd57 isn't as telling but I've heard very low cd57s in kids r significant. Not sure if that is true but i think thats what ive heard. You need to be taking d3 to bring up ur d levels.adults w that low a score should take at least 10k ius and kids 5k ius in the winter to raise levels. Retest after 3 months. Low d is associated w a number of cancers, heart disease and other issues so u need to get it up ASAP. Our levels were low too and we got them up and got better but b sure u take enough to bring it up. A good integrative doctor can help with this and checking b levels too. My dr says he likes to see d between 60 and 100 and b over 600, ideally over 1000. Also if u feel like u r getting the flu this winter u can take 10 times thedaily dose for three straight days and it really helps. The test results are not reliable for ruling in or out Lyme, bartonella, babesia etc. That's why u need a good LlmD. It would b reasonable to treat for Lyme based ion what u said but symptoms r very telling and could indicate a particular confection (regardless of blood tests). once on Lyme antibiotics u will get some indication u r on the right track- a worsening (temporarily) or improvement of symptoms.

She takes augmentin xr and doxy? I dont think my son took both at the same time. My llmd put him on augmentin xr when I told him that having to take all those pills before school was making him sick and he was getting sick by the time he got to school. With augmentin xr he only had to take the pill w dinner. Good luck with the augmentin xr.

My son was on it at the end of his treatment and I think that it helped along w tindamax. he is well now and it has been over a year w no drugs. Of course which drugs are effective vary depending on what bugs u have. It kills Lyme and strep.

My son was treated for 2 years and 3 months by two llmds. When they thought he was finished he was and has been symptom free for over a year now off antibiotics. Same thing for me. I feel great and have no fatigue which was my biggest symptom. The llmds have a pretty good idea how long it will take and a year or two is common. I felt much better four months into treatment and I felt really amazing after nine months of treatment to give you an idea. My son went up and down over his long treatment but he was able to go to school most of the time. He was diagnosed in early summer so the worst of his lyme symptoms were when he was out of school.

It does go by weight for doxy and 400 is the typical adult size dose. If you don't have a high enough dose it doesn't work. As for herding it varies from person to person but I think he should see some relief in a few days or a week. Herxing comes and goes. Chlorella also pulls out the deAd Lyme toxins that can keep recirculating in the body and causing symptoms. I saw a dramatic improvement in my eyesight after six weeks of taking 16 chlorella pills a day. Saunas can help too especially infrared saunas. Hang in there! After our long Lyme treatment I learned a lot and if I had to do it over I would have tested emfs in the bedroom at the outset. My sons room was off the charts as it turned out. I also recommend getting an evaluation from a well respected chiropractor/energy healer. You need to be sure his body is not under stress for other reasons. The right practitioner can bring the body back in balance to support the immune system. after our Lyme treatment was over I found this chiropractor who adjusted my son. She said he was twisted at the myo facial level and that this would put the body under a lot of stress. Anyway it's worth checking out because it could lead to a shorter treatment. She told me that it would have explained why it took so long for him to get ris of lyme. Apparently u can get twisted during delivery due to the use of forceps or a vacuum and these practitioners can unwind you, helping rebalance the body. Seems really weird but in my experience the weird stuff usually works. We also just did a hair test on him from analytical research labs that showed imbalances in essential minerals. They sent us supplements to use to rebalance copper, magnesium etc. These are other factors that could have created a weaker immune system for my son but I didn't know these things during his treatment. We did many other things during his treatment though- such as going gluten and dairy free, which helped a lot. Sorry for such a long answer sort of off the subject. I know u r wanting to get ur son well as soon as possible because 16 is a hard age to be sick.

Thank you, I think I will continue on the schedule I have and keep the doxy. with at least some food. It's not worth the stomach upset. That is one thing he has never had trouble with, and I would hate if that started. I would give with food. My LlmDs advised to take w food. If I took doxy on an empty stomach I'd throw up.

I agree-bartonella sounds like that.

Andrea bartonella is notorious for causing neuropsyche symptoms and some say it's harder to get rid of. Many kids who have been diagnosed with PANDAS later learn they have bartonella. If you got a positive test for bartonella that is very significant. It's common to have it or something "bartonella like" as some call it and not get a positive test yet respond to the treatment. They use other drugs to treat Bart than Lyme-rifampin is what we used along with azithromycin and something like doxy, amoxicillin or ceftin.

When I was sick w Lyme and babesia I had twice weekly iv myers cocktails (c, b,magnesium And zinc) and it really gave me energy. Glutathione would be good too. O took that w mercury detox.

Oh that is so frustrating!! Sorry to hear that. I just heard of another case of a very young child developing bells palsy and the doctors giving the child steroids only to discover that the child has lyme. Those screening tests are worthless unless the child is glowing with lyme. There is only so much you can do to try and spare people the nightmare of dealing with a long term treatment for lyme, especially when their doctors tell the parents that they have nothing to worry about. My pediatrician repeatedly told me I had nothing to worry about either and we missed the early signs of lyme six months before the palsy developed. Now I will always get a second opinion from an alternative source like our llmd or holistic md.

How long were you treated and was it by a llmd? It took my son about four months to get rid of the palsy. He was on much higher doses of antibiotics than my pediatrician would have prescribed and he had a picc line. Having the right combo and dose of antibiotics is important. Also BP can be caused by bartonella so maybe they should try treating you w rifampin to see If that helps. Our llmds determined by process of elimination that my son had bartonella and it may have caused the palsy-we will never know. After a month of a picc line w rocephin my son still had headaches so they assumed he had bartonella, added rifampin and within days the headaches went away. All bartonella testing was negative for him repeatedly. I would just get another opinion from a llmd to see if you can get rid of the palsy. If you still have other symptoms you may not have been treated long or thoroughly enough. My son needed 2 yearsand 3 months of treatment even though the palsy went away in the first six months. You treat until all or most symptoms have been gone for two months. You may already know all this. You need two antibiotics to kill the Lyme, often three actually. Doxy kills it in the blood but it can burrow in tissue -like in the brain. Iv rocephin is good because it crosses the blood brain barrier well but it is not enough if there is bartonella. It's very complicated but a good llmd will know what to try next for you.good luck!

Yes bartonella can cause bells palsy too and it is just as hard to test for. Lyme does not always show up in spinal fluid and our llmds did not advise us to get a spinal tap for our son w bells palsy because he had very positive Lyme test results. They told us that they would treat for lyme regardless of whether or not the spinal tap would come back positive for Lyme. You can get false negative results for Lyme w a tap. I think the tap is looking for antibodies to Lyme, not the bacteria so there r many reasons why it can be negative. He did get a scan in the ER when he developed BP-a cat scan I believe. The ER dr took one look at our son and said it's probably Lyme and hewas not Lyme literate.Pamela Weintraub discusses the possibility that persons who get a Bullseye rash may have a milder form of Lyme. That is interesting because there are 300 types of Lyme and it continues to change apparently. Of course an individual's immune system status is also very important as u point out. I am glad my son didnt get steroids because he was so sick as it was. I don't understand how steroids are helpful? Is it to stop swelling?

Thanks--we understand he has to live through if it is a herx, but my concern is it may not be a herx. He is not having nausea. He has a severe stomach ache--worse at night--I guess I will call it severe heartburn, He also gets very bad gas pains and abdominal pains. Dr. J's office said the herx could last a couple of weeks and it has been that. So how long do I wait before calling and asking to be switched? he's not getting the full dose now, as it is. Thanks. Terry, So sorry that you are going through this. You are in great hands w Dr J....have you told them about your son's lack of eating while taking the medicine? One thing they advised me to do during treatment when i was in a similar position worrying if my son was herxing or just getting worse while on tindamax was to stop the medication for two days to see if he feels better. Then you know it's a herx. (granted we were 18 months into treatment, not two weeks) It was a herx for my son and I can tell you Tindamax really causes some huge die offs and bad symptoms. My son felt like he was dying after the 2 nd day of tindamax. I believe the Tindamax helped him get rid of Lyme though. I remember how hard it was to get my son to eat and take his pills before running out the door for school. If you don't eat with the pills it can really bother your gut although azithromycin is not hard on the gut like doxy. He often didn't want to take it and I would find pills under the couch, on the floor, etc. I had to watch it go in his mouth to know he had taken it.we tried bribes, threats (if u dont take your meds u cant go here or there...)you name it. Is he taking enough probiotics? Our other llmd (not dr j) had us all take 4 probiotics pearls a day w antibiotics and this helped a lot. The pearls are slow release and do not get killed by the drugs. Also are u using anything to detox gut like bentonite? We did that too per a nutritionist that sfmom and elizabeth use. I think it was helpful. When my son got Lyme at ten years old we had no computer games but we ended up getting some to give him something to do while he had his Picc line. U can't swim and play sports w a Picc. We got wii and rock band and this entertained and bribed him when he was sick. He did not get addicted to the games either and once he was well he never touched them again. I guess he associated them w being sick. That is fine w me because he does more creative stuff with his free time now. Hang in there!

The reason bells palsy would worry be more than say knee pain is the high possibility that the lyme is in the spinal fluid. And of course facial paralysis is pretty horrible compared to joint pain. My son started to get tingling down his right arm while on oral antibiotics for BP and that is why Dr J advised a picc line, to stop it. Of course it could be bartonella and we will never know whether my son's was caused by lyme or bartonella. THey told me that you need to kill lyme in the blood and in the tissue to get at the lyme in the spinal fluid/head. We presume my son had bartonella and he responded to bartonella treatment so our llmds believe that either could have caused the BP. Of course you can develop BP overnight or after having lyme a while. In my son's case he likely had lyme a while but had recently gotten a bug bite behind his right ear. The location of the bite matters sometimes and often affects what is closest to it.

First of all no more steroids!!! My son had Bells palsy and Lyme and I was told that BP in children is almost always Lyme. They never considered giving my son steroids fortunately but we got a lot of bad advice from regular doctors. BP fro Lyme means u need two antibiotics to corner the Lyme-doxy and ceftin for example. In our sons case it was too little too late and he needed a picc line. Get to an Ilads llmd immediately and do whatever you need to keep her on antibiotics until u get there. The palsy went away and my son recovered from Lyme but it took 2 years and 3 months. Sounds like ur daughter got bitten by a tick while doing cartwheels in the yard. I would take every precaution that this is Lyme until proven otherwise. Definitely nonmore steroids tho. Good luck and feel free to pm me w questions.

It sounds like a herx to me. I had that kind of sharp pain once in a while during my lyme treatment.I had it once in my shin. If it is not always the same pain or in the same spot that is what lyme looks like. I also took Mepron and for me it caused me to feel horrible. My llmd said mepron can kill babesia and/or lyme so you can really herx with it, especially as you get to the end of the three week dose of Mepron-the herxing can definitely get worse. The hand stuff sounds like lyme too. I am sorry you all are going through this but hang in there-you will get better and so will your kids!

I totally agree with this. Also I like to think of IND as "where there is smoke, there is fire."

If there are any Lyme specific bands it is reason to treat for Lyme if you have symptoms. Sounds like your child has a lot of bands. Do you know which bands?

If you meet either dr Beals or Debbie McCabe you would be impressed. There are many misconceptions about Lyme literate doctors but if you see one of them you will see how very good they are and that they are appropriately cautious. I would not seek a "middle of the road" llmd but one with a track record of getting rid of Lyme-Beals - Debbie McCabe and dr jones in new haven have successfully treated patients for years.

If you meet either dr Beals or Debbie McCabe you would be impressed. There are many misconceptions about Lyme literate doctors but if you see one of them you will see how very good they are and that they are appropriately cautious. I would not seek a "middle of the road" llmd but one with a track record of getting rid of Lyme-Beals - Debbie McCabe and dr jones in new haven have successfully treated patients for years.

That's interesting. Thanks for the info. It sure makes sense.

I thought the same thing- a rash can come out during treatment as a herx reaction.