lyme_mom

Sometimes when people think they are allergic to an antibiotic they are really having a herxheimer reaction or die off reaction from Lyme. Azithro doesn't treat Lyme as much as it treats coinfections so your experience makes me wonder about Lyme. Have you been tested? Quite a few people on this forum have identified Lyme as part of their and their child's illness. Just thought I'd throw that out there so you are aware of other possibilities. If Lyme is involved you might get the same reaction from samento, a homeopathic remedy used to treat Lyme. I have heard that olive leaf extract is effective against Lyme but I don't have any experience with it. I mention it in case you get a similar allergic reaction to it. It may not be your problem but I would check it out.

Yes Diflucan is a cyst buster.

You should absolutely test for Lyme w igenex labs (other tests are wrong fifty percent of the time ), bartonella, babesia, myxoplasma, etc. I'd see a Lyme literate doctor because these symptoms sound like Lyme to me and the number of members of this forum who have discovered that strep is just one of the infections their child has is growing every week. The right combo of medications can make a huge difference because different antibiotics treat different infections..

Very interesting that the connection to birth month was evident in 250 studies.

You guys crack me up. Tindamax and Armageddon. Wendy hang in there. I remember being very short tempered on flagyl -it stresses you a lot. Patty

Thanks for posting. Psychiatrists will need to go back to school to learn how to treat infections in order to cure their patients. Strep, Lyme, bartonella, babesia and now viruses causing mental illness- so interesting. Also it's interesting that they recommend treating a schizophrenic who has the virus with artemesia, a Chinese herb used to treat Lyme and babesia.

Wendy that's exactly how flagyl made me feel! Edgy. That's the word I used. They are sister medications flagyl and tindAmax.

I would not rule out starting another antibiotic if your llmd wants u to do it. This often isnecessary when the current protocol is nonlonger working. Lyme is smart so they switch it up a lot and your llmd may suspect a coinfection based on these symptoms. The ivig could have helped with the Lyme and now bartonella symptoms are coming out. It's hard to know.. What antibiotic does he or she want you to start? It could actually help with symptoms. It doesn't always mean bad herxing. Rather than not taking llmds advice maybe you could get a second opinion. I usually went with the llmds advice although on occasion I got different advice from our two llmds and I had to make a decision. We switched medications many times even when we were not doing well. Just a thought. Is she taking rifampin?

That is interesting. I read some very compelling information on Mercola's website about how some doctors believe that blockages in the heart are not caused by diet but by latent infections. The cholesterol clumps at the site of the infection. The expert suggested that anyone with heart disease be tested for any of 50 infections. Sure makes a lot of sense to me and I am not surprised that mainstream doctors would not know anything about this. Seems worth investigating if you are told you have heart blockages.

That's interesting. I think you must be right. I have a feeling that the pink ones are not as strong but they seemed to work for me. The one medication that made me herx the most was Mepron. Boy that made me so tired that I had to stop it after five days and take a break b/c I was so weak and tired. Everyone is different and has different bugs.

They are not questionable. On what basis is your pediatrician questioning this? So glad you finally got some answers. Bartonella can look like PANDAS. With Lyme and bartonella meds u should see real progress! Also it isn't easy to get a positive bartonella test. My son was repeatedly negative on that bartonella test but he responded to the bartonella treatment.

Justine, I don't know the difference. I do know that it is hard to get a positive test result so you can have it and it may not show up on a test. I also remember reading something that said that you have to test for it early on. I can't remember the details. Dr. Schaller in Naples wrote the only book in Babesia that I could find. He said he can find babesia under the microscope in patients when nobody else can. I was not even tested for it but I was treated for babesia and got better. I think that this is often how they treat babesia b/c the symptoms are the most important thing and the lab tests are just not very reliable. I also read that just like with lyme disease, there are many types of babesia (13 types apparently) and the tests only test for two strains. I think this is babesia duncani and babesia microti. With lyme there are apparently 300 known strains and they test for two types only. The spirochete is morphing so testing may always be a moving target.

I googled it and it is also called minocyclene. They often use minocyclene instead of doxycyclene when the person is going to be unable to stay out of the sun. It is less sun senstiive. However I tried it and it made me feel a little weird. My friend also tried it and felt crummy. We both felt better on doxy than minocyclene. Our llmd said that women do not seem to tolerate it as well as men do. Just something to keep in mind. Other options are doxy, doryx (slow release doxy). I am sure your llmd had a good reason for minocyclene. That was just our experience :-).

It has been my experience with my kids' Lyme treatment that they often forget or do not know to mention symptoms. I would ask him if anything hurts or feels different. My son and my daughter each forget to mention that they were having headaches until it came up when a doctor asked them.they had nothing to gain fro Making it up. Kids do not know what is "normal" like adults. They don't have our perspective. Also follow your intuition. A parent knows their child better than anybody and his symptoms could be from Lyme disease. I'd test thru igenex and get a lyme doctor to evaluate and try treating for Lyme or bartonella or babesia if suspected. Lyme is a big problem in Canada. We never sAw ticks either- just one on my daughter. Most people never see the tick (or whatever biting insects can give u Lyme).Good luck! If it's Lyme he can fully recover w the right treatment by an ilads doctor.

My son was sick for 2 years and three months and for the first year I was so worried about him and my other kids who had lyme that I felt like I was holding my breath, waking up each day researching what I needed to do to get them well and taking them to one appointment after another. I carried a lot of stress all the time. Then one day I realized this stress was going to make me sick and I that I needed to stay well to help my kids. I suddenly had a new perspective on what we were going through. I realized that lyme is so prevalent now that we were actually one of the lucky ones because we knew our kids had lyme and we were doing something about it with top lyme doctors. There are so many kids who are silently suffering with lyme who may not ever get the treatment they need because nobody knows they have it. These infections are out of control and we will have so many sick people with lyme, bartonella, babesia, etc. in the future. At least all of us will know how to deal with it after this ordeal and hopefully we can help a lot of other people get the help they need earlier b/c of our experience. It was a tough two years for sure. Even 18 months into it I wondered if we would ever be done with lyme. However we are all doing really well now and we are not taking antibiotics any more. Even if we have to retreat in the future for a short period of time I now know that you can get rid of these symptoms with the right treatment. All the Moms dealing with this need to take care of themselves so that they can help their kids. Hang in there!

Oh spctmom hang in there! You can recover and you will appreciate your future healthy life more than the rest of us after all you have been thru. Remember it is darkest before the morning light. Being on the right antibiotics will make a huge difference. Give it a chance. I have a relative who was severely depressed and suicidal only to learn she has Lyme and bartonella. She does not know how long she had it but we suspect it has been many years. She also had dental infections that she didn't know about. She really improved on the right antibiotics and is still in treatment. Getting the right diagnosis is half the battle! U r not alone so please have hope. You should let a friend or family member know how bad you feel to gt extra help.

Elizabeth, Thank you so much for sharing all of your knowledge!!!!!! My son is on a good probiotic, but I still fear the C-difficile again. I was really begininning to wonder if he was antibotic resistant to these infections, but you have shed light on my fears. Dr. Jones did say it would take a minimum of 18 months to treat his lyme completely and it has only been 9. (even today he has been complaining all day of a "pumping headache" which is one of his physical symptoms from the lyme) I feel very torn myself---Lyme or PANDAS??? Hugs Judy Doctor Jones told us it would take at least two years to treat my son and he went off his antibiotics after two years and three months so he was right. There are ups and downs in the lyme treatment, at least that is what we experienced. About six months ago my son was really struggling and that is when DR Jones added tindamax. Now he seems to be done with his treatment so I believe it must have helped him. Nine months is not that long for a bad case of lyme and if Dr Jones said it would take 18 months I would believe that. I am wondering if Dr Jones wanted you to continue the tindamax? I agree with the other poster that a reaction like that probably means he still has lyme to kill. Dr Jones put my son on tindamax for five or six weekends. Perhaps he can put your son on weekend tindamax instead of several weeks straight if he wants him to continue with a cyst buster. I hated to see how bad tindamax made my son feel so I can only imagine what a week straight would do. By the second day my son said he felt like he was dying. One time he could not even walk on the second day of tindamax. Apparently the anti yeast medication diflucan is also used to treat lyme b/c it busts cysts. I love Dr Jones and he is a genius. We also have another wonderful llmd that we have used for the past year and a half and he is an integrative physician. I am glad we have had them both during our children's lyme treatment and they both offer some unique insights. Nobody knows what lyme and the coinfections look like as well as Dr. Jones. I doubt there are too many people who can do the exam that he does and tell you so much about your child. Integrative doctors who are llmds also do some things that can be uniquely helpful and critical to the patient getting healthy again. If you really hit a wall with his treatment that might be something to consider doing for a second opinion. My llmd does not think that ivig works for pandas by the way. Each doctor has their own perspective on this obviously. My local llmd uses bicillin shots plus the lyme treatment for pandas patients. Heavy metals can be a problem with lyme not only b/c it is toxic but also b/c lyme can hide behind mercury in the body. An integrative lyme doctor tests for this. Imagine a huge wheel with a ton of different spokes in addition to antibiotics and each spoke is another tool for helping the patient (heavy metal detox, nutritional supplementation, treating latent bacterial, viral and fungal infections, testing for allergies, mold, etc., energy medicine, emf reduction, etc.) The more you know about all these spokes the more likely you can find the spokes of the wheel that may be holding your child back. Dr. Corson's presentation and the article that was posted by her really covers everything that I have learned about treating lyme with western and complementary approaches. If you read that maybe there will be something that gets your attention that you have not explored like testing for high emf levels in your son's bedroom. We did this 18 months into our son's treatment and discovered that he slept in an extremely high emf area so we cut off the power to his room. Or mold could be a factor...so much to learn. Hang in there.

Oh Mary I am so sorry! I didn't have time to post yesterday b/c I was busy with a bunch of appointments but I breathed a heavy sigh when I read your post. I am sure you feel like you just climbed Mt Everest to get your older daughter well and now you have another mountain to climb. This time though it will be a shorter journey b/c you are now an expert. If only we all could have the knowledge we need to cure our kids when they are first diagnosed! It just goes to show you how Lyme is the great imitator and even someone as knowledgeable as you are can miss it! Your posts here are always so well written and informative. I know you have helped so many and I have enjoyed learning from your and others experiences treating lyme disease. You should know that if you have lyme you have a lot to look forward to after you treat it. Several years before I was diagnosed I also had periodic fatigue that I attributed to being a busy mother of three with too much work to do (driving, cooking, cleaning, etc.) I saw a naturopath and she thought I had a hormonal imbalance and prescribed a remedy. It helped a little but I continued to get really tired once in a while. I figured I was getting old. I no longer ran and figured those jogging days were over (I had been a runner into my thirties but rarely ran anymore). I even got to the point where I didn't like to have a glass of wine b/c it made me feel so awful the next day. I tried not to stay out late either b/c I really needed my sleep badly. My husband always seemed to have so much energy and wanted to do things but I found these activities to be overwhelming at times b/c I just didn't have the same level of energy. You know weekend trips, concerts, etc. I had adjusted my life to my new energy level and slowly I had cut back and hadn't really noticed it. I also gained weight and this was years after my last child was born :-). Once I learned that I had lyme and babesia and I got the proper treatment I felt ten years younger. It took me 9 months once I was on the right treatment. I started running again one day and was surprised that I could run a couple miles with no problem. I wasn't winded or sore or fatigued-I just got on the treadmill and did it. I also dropped about ten or 15 pounds without trying. This is apparently a common benefit of lyme treatment. I think there are a lot of moms out there who are attributing these symptoms to age and who are giving themselves a hard time about weight gain and lack of exercise who are really sick with lyme. I got my life back with my lyme treatment in ways I never could have imagined. This is why I am so enthusiastic about getting others to get checked for lyme. YOu have no idea how good you can feel if you are sick with lyme b/c it sneaks up on you. Your family is in my thoughts and prayers Mary. Hang in there!

Wow! Some great information! I am so interested that she does energetic testing. How does she do this? Manually or with a machine? Also can you elaborate on the earthcalm-what it is and if this is why you experienced tingling? I turned off the cordless phone almost a year ago. It is kind of a hassle when someone calls though...We have one corded phone and you can't walk around while talking :-). I use my cell phone for most calls and I have a little thing on it that is supposed to make the cell ways less of a problem. Its from biopure. If Dr Corson sees the benefits of the earthcalm (I assume it is a pendant you wear?) that makes it worth trying. I have not turned off the wireless router (My husband was not keen on this idea) but I do want to look into utilizing the wiring we have in our house to access the internet via the wall outlets. I can't remember the terminology but we have wiring for a t1 line so all we need a server installed to make the t1 lines in the house tap into the internet without wireless routers needed. My holistic dentist told me that turning off the router can really make a difference. My son who was sick with lyme for over two years spent the first 18 months of treatment sleeping in the worst emf spot in the house. When I discovered this I turned the circuit off to his room and today he has been off the antibiotics for almost two months and is doing well. I am sure that the emfs played a role in his long illness. The advice on mold dovetails with what I have been learning. My sister wasn't getting over lyme and our llmd told her to test her house for mold. She had a leak in the basement which she was unaware of and at least two forms of toxic mold growing there which was being circulated through her house. She got it removed and her vents cleaned and now she is improving. Another friend told me that their llmd on the west coast won't even treat someone who has a mold problem b/c they won't get well. I had someone test our house for 325 dollars. They brought a mold sniffing dog and found only minor mold, nothing serious or costly to fix. Just need a new showerhead and to vacuum some vents. The mold inspector told me that dust mites can be as big a health problem as mold....The list goes on and on...

I tWOw 7 is catastrophic. I think my kids were in the 20s. One thing my llmd said was that the prescription version of 50,000 d is not what he would recommend. He said that it does not raise levels fast enough. Might not be all d3 but also d2. My lllmd sells xymogen D3 but you can probably buy any d3 from a place like whole foods and be fine. I think the highest dose you can buy is 5,000 ius of D3. My llmd had my kids take 5k ius in the winter to raise levels and 2k ius in the other months to raise levels. My kids were 8 to 12 (60 to 85 lbs). If levels are good I think 2k is good in the winter and maybe 1 k in the other months or an equal weekly dose. Since d is fat soluble it matters how much you take in a week, not so much each day I am told. So if levels are ok then you could give one 5k a week, for example.

Wow! So glad you liked her! She is starting you on some strong stuff. Diflucan and flagyl are cyst busters. I took flagyl and it made me feel a little on edge but I felt better when I stopped it. I know others who feel it really helped them. Try taking it w oj to avoid tasting it- so gross. Makes sense to stagger the herxing starting with you. I feel so bad for you and what you have ahead of you but know that you will gt better and so will your kids now that you are treating the tbds.

Families also spend time in the same backyard and vacation together so they are exposed to some of the same risks. I think Mosquitos likely transmit lyme because we see plenty of those but almost no ticks. Dr j doesn't think my kids had Lyme from birth because they were very healthy until diagnosed around 10. He has told me many times that even if a patient is positive he will not treat unless the child has symptoms. He said he sees whole families of kids like ours and sometimes all but one are sick with lyme. Nonetheless I am with you-I had the whole family tested via igenex to know what our exposure was. When symptoms arose later we knew what it was and nipped it in the bud by thoroughly treating for Lyme. If I had known about this years ago I would have igenex tested my kids years ago to see if they had any antibodies.I would have given some symptoms that my son had in the past a second look had I known that they could be related to a tick borne illness. Good for you for following your instincts.

My llmd says absolutely not. We have never got flu shots fortunately. I always thought it was so strange that we would need them b/c I never had them growing up. My llmd says that ten years of flu shots will triple your chances of getting alzheimer's b/c of the mercury in the shots. I have also been told that the flu vaccine is usually a different strain than what ends up going around so it is questionnable whether it really works. My llmd says that especially kids with asthma should NOT get the flu vaccine. There are a number of things you can do to prevent the flu. Most importantly get d levels checked (25 hydroxy test) and supplement if levels are not over 50, ideally closer to 100. My llmd says that low d is associated with 6 forms of cancer and heart disease and the flu. If you feel the flu coming you can take 10 times the daily dose of d for several days to help fight the flu. We did this plus we used chinese herbs and tea that my acupuncturist prescribed. I would find a good acupuncturist rather than get the flu shot. That way you know where to go if the kids start getting sick. My daughter is nine years old and love acupuncture. My older two do not but they will take the tea and the herbs. Acupuncturists/chinese medicine doctors can work wonders if you start to feel sick. I will try and find more info that my llmd hands out about how to prevent the flu and I will post it.

I dont have any experience with ivig but I know there are a number of remedies for inflammation that do not suppress the immune system that might be worth looking into like quercetin, that natural aspirin for head trauma, arnica and possibly others. I had to take these things instead of pain killers after the removal of a root canal and I never had pain. I think it worked because it stopped the swelling.

Are you taking the tiny doxys or the big pill? The little one was easier on the stomach for me. Doxy is one drug they kept me on the whole time but I got good at taking it in the middle of an egg sandwich for breakfast. Eat a couple bites, then take the doxy, then eat a couple more. Any other way and I would feel sick. The one I took wasn't much bigger than a sudafed pill (you know the little red ones they used to sell?)