lyme_mom

I am so glad your kids are getting better! That is great news. Dr J didn't every have a problem with the other stuff we were doing. He was not impressed with a hair test and suggested the blood test was better but did not order one for my kids. Their hair tests showed a lot of heavy metals especially arsenic so I figured that the natural slow detox that Beals recommended would be a good idea regardless. Not sure if Dr J tested vitamin B which Dr Beals thinks is important. Just can't remember. Dr. J is used to working with patients who use other practitioners as well and does not seem to have a huge ego at all. In fact his staff is happy when patients have local llmds b/c they just want to save these kids one way or another. I think Dr J understands all of this stuff and has seen it all even if he doesn't do as much in the way of detox and nutrition as an integrative doctor does. Dr Beals does have a great sense of humor :-). I have so much respect for him and he clearly LOVES his work. He is passionate about helping people but he is not militant about diet, etc. He lives in the real world :-). He is a clinical nutritionist too and this makes him more aware of the importance of nutritional supplementation if needed.

Hi everyone, I am hoping that some of you know something about the second opinion service that Columbia University Medical Center's Lyme and Tickborne Diseases Center offers. It is a two day evaluation that involves pretty intensive neuro-cognitive and psychiatric testing as well as a thorough medical history. Beyond what the website says I am interested in what kind of information you get as a result of their service and how holistic are they in terms of what they look at? Ie. gut issues, heavy metals, etc. The program is run by Dr. Brian Fallon, Professor of Psychiatry at Columbia University who has a great reputation in the Lyme community. I have a relative who lives several states away from who suffers from severe depression/suicidal thoughts who has been very ill for the past 18 months. She has been hospitalized several times, has tried many different psychotropic meds and has even had electro shock therapy. Her doctors consider her "treatment resistant." About a year ago we brought her to see our llmd who diagnosed her with lyme based on her symptoms (she has 18 lyme symptoms off the ilads list) and her low cd57 score of 16. Her igenex test showed a number of indeterminate lyme specific bands and may have had one positive like 41. The igenex result said "negative" but we all know that it is a clinical diagnosis and the presence of an indeterminate band is often interpreted as slightly positive. She responded to the initial lyme treatment (the depression and anxiety lifted after two weeks of doxy and she got increased leg and joint pain). Then her local doctors told her she doesn't have lyme and she stopped the meds and tanked again. We got her back on them but her progress was slow. She didn't always do what the doctor ordered and she did very little detox. Her heavy metal blood test shows 95th percentile toxicity. Then she moved into a house in which there is a mold problem and not long after she got worse (this is my interpretation of events). Her psychiatrists and psychologists do not buy the lyme diagnosis and are not interested in her serious gut issues or heavy metal toxicity. One even blamed the antibiotics on her worsening depression. We may be able to get her in to the Columbia Univ program for a second opinion and I am hoping we would get some great info from it b/c it is not going to be totally covered by insurance, maybe not at all. Anyone have any info on this or has anyone had similar experiences? Our llmd says that she may need a picc line but we really need to get a second opinion from a psychiatric source to get total buy in on a biomedical approach to her psychiatric symptoms. She doesn't even believe she has lyme and blames herself on her problems. I think something is obviously going on besides psychiatric problems b/c her cd57 score is so abnormally low. Also she has physical symptoms like leg pain, nightsweats, vision problems, sound and noise sensitivity, brain fog, poor memory, forgets words, etc. A lot of cognitive stuff going on and she is really too sick to get educated about lyme as those of us on this board have done. Thanks in advance for any suggestions! Patty

I read cure unknown cover to cover twice and each time it was like I was reading a different book b/c I got different things out of it. The first time was right after my son's diagnosis and the second time was about 9 months later. It is so packed with info that unless you are in the thick of it you might not catch all the details.

If you are flexible on when you go you can tell his secretary that you are interested in any cancellations and she will call if one comes up. This happens frequently so you can get in sooner if you are flexible.

That's what we did but the other way around. We had been to see Dr. Jones several times before starting with Dr. B. I went to him first when I lost my first lyme doctor and I was not sure if I was going to stay with him b/c I was still sick after one lyme treatment and wanted to be sure I got someone good the second time around. Any questions about him evaporated with my first appointment because it was obvious that he knew what he was doing and he was aggressive with lyme, which is what I needed. I decided to have him treat our kids along with Dr J b/c he does more than just treat lyme-he looks at heavy metals, nutrition, etc. and it is all very helpful. We ended up seeing both doctors over a year and a half and I can say with certainty that either one would have done a great job on his own but we were lucky to have them both. Neither one has a problem with second opinions just glad you use a llmd. They were basically in agreement on the treatment approach b/c they both follow ilads guidelines. Even after lyme treatment DR B is our doctor-never going back to a traditional non integrative doctor again unless I have a specific need for one :-).

It is a good idea to see Dr B in MD so that you can get the opinion of a lyme expert. He is very likeable and super smart. He can get you started and for established patients whom he has seen in person he is willing to do telephone appointments occasionally for those who live out of town so long as you get your blood work done to check liver etc. I have a number of family members who have done that with him. I would do the cd57 test before you go so you have that info with you. The results come back in two days sometimes. Remember to do it through labcorp. Dr B is also about as inexpensive as it gets for a llmd and I think that even if you find a closer llmd it is always nice to have a second llmd you can consult with especially regarding kids' treatment. He treats a lot of kids. I know what you mean about the fda getting involved in vitamin supplements. Crazy. Don't they have more important things to monitor??!It will be horrible if we are unable to buy natural supplements in the future without going through a pharmaceutical company that will likely charge a lot more and change the product for the worse so that it can be patented as they have done with synthetic hormones. What is lnd? Do you mean low dose naltrexone?

I am so sorry that you had to deal with that. I know how you feel b/c similar things happened to me during our lyme treatment. Some family members did not get it and made comments that were not supportive. It caught me by surprise b/c everyone was supportive when my son was developed Bells Palsy and was diagnosed wit lyme but as time went on and was struggling with lyme six months into it some family members made comments that indicated their doubts about the llmds and the course of treatment. They did not understand that it takes a long time to treat a bad case of lyme and coinfections. After doing all the research on lyme it was clear to me that no one in their right mind would seek treatment from a doctor who is not a lyme expert but others who do not have a sick child with lyme have the luxury of not doing any research and offering strong opinions. One person close to me made the comment "aren't you worried about antibiotic resistance?" Huh???? That took me by surprise. How else are we going to kill the lyme? If they don't think he should be on antibiotics then they must not believe he has lyme. What choice did I have? I was not happy about months of antibiotics but I didn't want the lyme to go to my son's brain or kill him (it was in his cns we believe b/c of the palsy). Other times I was frustrated that some in my family did not understand how sick I was and that I could not keep up with all the family events-birthdays, baptisms, etc. It was too much and I found it hard enough to get through the day taking care of my kids when I was so sick. I was really sick for a few months and I was taking several mini naps a day to get through til bedtime dealing with my kids. The hard part is that you do not look sick when you have lyme but inside you can feel like you are 100 years old. If you had cancer you would get understanding but not with lyme. So I just stopped talking about lyme with certain people b/c you don't want to expend energy dealing with them on that subject. If they don't have the interest to watch the movie and read a little about lyme then they really should not offer such strong opinions. I had some neighbors who I would run into pretty often who never asked how my son was doing and they knew he had a picc line. I just don't think some people understand how serious lyme is. But we had others who were amazing and really surprised us with their concern. One new neighbor we didn't even know very well brought my son a teddy bear and a card when he got home from the hospital with his picc line. I think they were more in tune with what we were going through b/c they had dealt with a serious health crisis with one of their kids years before. IT certainly makes you more aware. Another kid in the neighborhood brought him some balloons when he was stuck at home during the summer with a picc line. It was so kind of them and so appreciated. So you also discover some really sweet people too during this. I do think that after dealing with a serious illness we are much more in tune to helping others with a health crisis. One of my sisters was diagnosed with lyme during our lyme treatment and it we supported each other and had a lot of laughs about lyme ignorance, etc. Its great to have someone you can talk to about it who gets it. I also have a neighbor who learned that she has lyme and we have a lot of fun talking about it and joking about it-you know diagnosing people :-) and reading about different treatments for lyme. We joke that we are practicing without a license. Laughter is great for dealing with the stress of it all :-). THats why this forum is so great- you know everyone gets it.

I can only imagine how hard it is for you to discover this. My llmd would just treat you and not worry about further testing. He would also see what your cd57 score is (he really relies on this for adults). He treats the patient not the test results, he says. Erlichia is treated with the same drugs as lyme so a lyme treatment will cover both. Your tests show you have been exposed to lyme and the presence of erlichia only adds to that. Do you have Bartonella symptoms? Like calf cramps, sore soles of the feet, or really bad headaches? Once you have been treated for lyme Bartonella symptoms may appear if you have it and then you can treat it then. Spiro is a homeopathic remedy that my llmd thinks is excellent for lyme and coinfections. He uses it in conjunction with antibiotiics and for those who have finished their lyme treatment for a period of time. He also uses samento for lyme. He and another doctor near us recommend transfer factor lyme plus for lyme patients. It gives you antibodies to kill lyme apparently. I was told that it gives you an immune system to fight lyme with. Neither doctor can get enough of it in stock from the manufacturer though so we are still waiting for a new supply :-(. As for the hormonal imbalances, lyme messes with your hormones and metabolism. Many patients drop pounds that they have gained after treatment. I lost ten without trying once I was treated for lyme and babesia. I think it can stress your body and make you more estrogen dominant so it is a good idea to keep an eye on that. Acupuncture and herbs can help with hormonal imbalance. I tried a number of things through my doctor and my acupuncturist. Getting a thermogram is also a good idea. It can tell if you have any hot spots in your breasts related to high estrogen. It sees issues way in advance of a mammogram.

Hi Pacificmama, our whole family is taking the high dose probiotics (15 to 20 50 billion a day) and at least half a cup of bentonite a day. We just chug it :-). We use the nutritionist that Wendy and Elizabeth recommended. I ran this past our llmd and he said they looked like great probiotics and said it is safe to take high doses of bentonite. He said it can cause constipation but we have not had that problem. She also wants my son, who is the patient we talk about for our calls, to take colloidal silver to kill gut bugs. She says this is part of her bowel program. He has no obvious gut issues but she says anyone who gets Lyme (or anything else for that matter) has gut issues. I will try anything that doesn't hurt that can help us stay healthy. My llmd said the silver is fine but it doesn't kill Lyme and coinfections as well as Samento and Spiro, two homeopathic remedies.I like the fact that she doesnt require you to change your diet to heal the gut but it can certainly help to do so. I did it myself years ago and took some powder from Xymogen to heal the gut. It was IGG something. It was very helpful. I think u would see some benefits pretty quickly if u tried our nutritoonist' program of high dose probiotics and bentonite and maybe the silver. A consult is 90 dollars and might be helpful.

Interesting. What a conflict. there are no Lyme groups or pandas groups giving them money...

Amoxicillin is one of the best drugs for lyme along with doxy. My kids had amoxicillin three times a day during their treatment. (eventually my son had almost every combo there is :-)) They start with amoxicillin if u r too young for doxy, are a pregnant mother or the doxy bothers you. It is apparently excellent for lyme.

My llmd is also sensitive to costs and will treat symptoms and not rely on test results. Trazadone is also good at night for sleep in small doses if 50 to 200 mg.

U might b able to get in earlier with dr Beals in his dc or private md office in stevensville md.He knows pandas and Lyme. He is excellent.

I did the dot blot-both types of analysis. I was told the provocation antibiotic was to flash kill any Lyme so that it shows up in urine. I got a bicillin shot. I was trying to determine if my Lyme treatment had worked and whether my new symptoms were Lyme so they said you need to wait two months after antibiotics to be sure that older dead Lyme isn't confusing the results. My doctor told me that I was negative on one of the two tests and positive on the one that is more difficult to find Lyme (forgot which one). So I was definitely positive but one of the dot blots didn't find it becaus it isn't easy to find. I was shocked that it was still there after five or six months of treatment. My doctor said this test is accepted by more doctors because it's hard to debate it if you find dead Lyme not just antibodies.

Take a picture in case you need to show this to a doctor in the future or you ever seek an opinion from a tickborne disease doctor. Photograph any rash because it might be important later.

I agree with SF Mom. See a llmd first so you dont waste a lot of money on tests you might not need. You should get a cd 57 test from labcorp. It can give u an idea of how sick you are with lyme if u r at all. WIth that history I would definitely want to treat. I felt ten years younger after treatment so it can make a real difference in your life. I would worry about untreated lyme and what it can do to you down the road. The tests are just clues in a clinical diagnosis. Energetic testing can be reasonably priced and offer more clues as to what the unique issues are for each person in the family (ie. coinfections, yeast, heavy metals, etc.).

I agree. Perhaps your husband could go with you and meet the doctor. That could help. My husband didnt doubt the diagnosis (my sons case was very clear cut-diagnosed in emergency room and had very positive elisa and western blots). However, accepting a lyme diagnosis and agreeing to long term antibiotic treatment for lyme are two differnt things. So i asked him to come with me to conn to meet dr jones because I knew treatment would be a long haul and wanted him to meet the doctor who would be prescribing treatment and be "on board" with his instructions. We needed to b united in order to sell our son on what he needed to do so I figured he should meet the guru too. He is not easily impressed and he loved dr j. He told our son that dr j was an old fashioned doctor, a rarity today, who spends lots of time with the patient. He also has great respect for our local llmd. This is Important because when your child complains about taking meds or is having bad herxes u need to b united about what needs to b done or else ur child might not want to take the medsAteLier r smart and canonic up on these things. He didn't go with me on subsequent trips to conn because it wasn't necessary-just the first trip. There r ups and downs w treatment so having a doctor you respect and trust is very important. It was very helpful to have two llmds who agreed on the treatment. I certainly had other family members who doubted The long lyme Treatment so i how how hard that is. I certainly got advice from people who had no idea what they were talking about or had heard that antibiotics are overprescrined for Lyme. It is easy to believe this misinformation if your child doesn't have bells palsy or some other horrible condition that is being treated by the drugs. I did my research and did not want him treated by a doctor who was mot a member of ilads. He could watch under our skin that would help. It's pretty intense and professionally done and would not take a long time. My favorite Lyme book is cure unknown by pamela weintraub. This book thoroughly explains the controversy over Lyme disease and the insidious ways it can manifest itself in patients and in whole families. It is very convincing because weintraub is an investigative reporter.Good luck.

This can vary a lot between patients. In our experience it is often hard to know whether it is Lyme or not in an adult because it is easy to blame knee or shoulder pain or ither pains on working out or doing too much. However I can tell you though that all aches and pains went away with treatment. If a kid has these joint pains I would be very suspicious of Lyme. You should review different lists of Lyme symptoms because he may have others you have not considered. I will post some links after I get my kids off to school. You may find links in the general info area of the Lyme thread.

Dr. Paul Beals, treats Lyme and PANDAS.He is an integrative physician with over 35 years experience. He works out of NIHA in DC (nihadc.com) and his private office in Stevensville MD which is a little cheaper. In DC he works with a holistic nurse who is quite knowledgeable about both too.

Knee pain is very common with lyme. With lyme it usually is there one minute, gone the next. Often you will have pain in a knee and then the next time the pain is somewhere else-in another joint.

We took 4 one billion probiotics a day during our lyme treatment and never had yeast issues. The pearls that we took were slow release so they could be taken with antibiotics, unlike most probiotics. However, since completing our lyme treatment we have begun taking extremely high doses of probiotics on the advice of a nutritionist recommended by other lyme moms on this forum. This nutritionist wants my son to take 20 50 billion probiotics a day plus half a cup or more of bentonite liquid to heal his gut. He has no "plumbing issues" but this nutritionist says that anyone with lyme or other infections (or other diseases) has an unhealthy gut and that a healthy gut will prevent these diseases. After two years of antibiotics this is worth a try and it cannot hurt. I would have done this earlier had I known about it. Wendy sfmom and Elizabeth told me about their nutritionist. So I would get your child to take more probiotics if you can. The bentonite is to detox the acids from the gut and other toxins.

I think Dr. Jones is fantastic. I would also consider Dr Steven Bock in Rhinebeck NY b/c he offers a number of complementary therapies which I think have a lot of potential to help. He has an ondamed machine which is used to test for bugs and other issues energetically. He also treats patients with this machine I think. He uses acupuncture too. We have never seen him but I sure would be interested in seeing him if I lived near his office. I read about him in Connie Strasheim's book Insights Into Lyme Disease Treatment and I read his brother, Kenneth Bock's book about Autism, ADHD, Allergies and Asthma. They work in the same office in Rhinebeck NY. His fee is 850 for first appt and I am not sure whether that includes the ondamed testing. We have done ondamed testing before I think his office really knows how to use it well b/c they have used it a long time.Being on the right combo of antibiotics really makes all the difference but it is wise to do all you can to fix the gut, detox, etc and Dr. Bock does this too.

Thats pretty funny. I hated watching what it did to my son herx wise but I think it got him well.

Your story is so moving and I can totally relate. My son is also 13 and was very very sick with lyme for over two years. He did not have pandas but he was nonetheless very ill. Sometimes he felt like he was dying and there were times when he could not walk. At times I wondered if he would ever beat it and be well enough to be off the antibiotics. After 2 years and 2 months he is off the drugs and doing really well. He never had steroids or ivig. I think all lyme patients have multiple infections these days and that is why llmds are great doctors to see b/c they treat a ton of infections everyday, not just lyme. Those of us who have dealt with lyme often say "lyme" when we are referring to all tick-borne infections so it can be a little confusing for newcomers. When my son was first diagnosed with lyme after developing Bells Palsy the llmd told me that he could also have Bartonella and/or Babesia or any of these other tick-borne infections. I was like "huh"? I was having trouble accepting that he had lyme and then I was supposed to believe he had all these other bugs possibly. I was thinking "OMG what is next?.." I knew nothing of parasites then and that would really have blown my mind. Someone on this board made a funny comment once about "where did all these bugs come from!!?" It made me laugh b/c this is like science fiction, isn't it? I remember thinking well he just has lyme but that was b/c I couldn't imagine him with all these bugs. As it turns out he definitely had bartonella and we will never know for sure if he had babesia too. This may be what is happening with so many of the parents who think that they are just dealing with strep. Its human nature I guess. Your son can get well so hang in there!! We are rooting for you.