lyme_mom

I just have a second to write but wanted to tell you that you will certainly see more improvements with a llmd given those test results. Band 31 doesnt show up for a year so having 3 pluses next to 31 means there were a lot of 31 antibodies. This means that your child has probably had lyme at least a year. These results will help with insurance coverage b/c most patients are not CDC positive but still have lyme. That's the good news. That and the fact that you finally have some answers which is half the battle. Coinfections are so common that you almost never find a patient with just lyme so keep that in mind. I would watch Under our Skin, the movie, and read Cure Unknown by Pamela Weintraub to help you become a lyme expert fast. I would call a number of llmds if you have trouble getting an appointment quickly. Good luck!

Absolutely do not do steroids if your child has Lyme or is suspected of having Lyme or any other infection. A llmd would tell u not to do steroids because it can make the infection worse. I would not rush into ivig either until you have tried the Lyme protocol w a llmd. Ivig may not be necessary and there are risks with it. I have been told they do not test it for Lyme. U might get a cancellation sooner if u ask or call another llmd.

My llmd gave my ten year old doxy. He said the teeth staining reall applies to tetracycline. I think every pandas pitand child should see a llmd first because SO many have latent infections that the pandas doctors are not trained in picking up on. Blood tests for Lyme and coinfections often are negative even when there is an infection so bartonella or Lyme could also be involved. It's the symptoms that matter most and bartonella can look like pandas. A good llmd will make a huge difference.

My sister was diagnosed with shingles but it didn't hurt. A couple years later she was diagnosed with Lyme and realized it probably was not shingles that she had before but Lyme because she was not in pain w the shingles. If you have Lyme you do not want to wait to get treated. Left untreated it can really bring you to your knees and it would make it harder to get your child well if u r super sick. At the very least try taking samento which kills Lyme. U dont need a prescription. Start slow. It can cause a herx. I'd want to be sure the Lyme (if this is Lyme) does not progress if I were you and samento could help. It's better to see a llmd asap though.

There is a lot of Lyme in Maryland so tell your sisters to be careful. Augmentin treats Lyme, not sure about bartonella. Rifampin is used for bartonella too. My son had Lyme and Bart and is well now-2 plus years of treatment later. Calf cramps are also a sign of Bart. At least u have answers now and a correct diagnosis. That's half the battle.

The PANDAS doctors do not appreciate how many kids w pandas have Lyme and other infections. I would go to a Lyme doctor before I would go to a pandas doctor because wouldn't it be better to avoid ivig and pex if it isn't necessary? I also have heard that Lyme often attacks whatever is closest to the bite .my son had a bug bite behind his ear and then developed bells palsy on that side.

It sounds like you are finally on a path to successful treatment. Having the right diagnosis is so important and a high percentage of children diagnosed with pandas have tick borne diseases, especially Bartonella which cause neuropsyche symptoms out of proporttion to other symptoms. A negative test for Lyme means nothing. I would suspect that Lyme is involved most likely if babesia and or bartonella are involved. The bartonella drugs will address Lyme most likely anyway. Mepron, which is used for babesia, can also kill Lyme so it may not matter what the Lyme results are because it will be treated anyway. A good llmd will treat the symptoms not just the test result. I'd be encouraged if I were you. Hang in there.

Never heard of this doctor. There are just a handful of ilads trained lyme specialists in DC and I would not go to anyone who is not a member of ilads if you really want to be sure that you are not dealing with a TBD. Dr. Beals, Dr. Jemsek, and Dr. Jaller, are three of the main lyme literate doctors in the DC area. Beals is holistically oriented which is a plus. Jaller may be too but I don't know. I hear he takes insurance though. Dr. Sivieri, another holistic MD, is also well thought of as a lyme specialist although he may not be a member of Ilads. The best way to find a doctor, aside from a good reference from another patient, is to email Barbara at Ilads.org for a list of members in the area. There are some doctors who specialize in lyme/tbds and do not use antibiotics but we did not choose that route. Whatever your brother does, he should not go see an infectious disease doctor unless it is Jemsek. Most id doctors deny chronic lyme exists.

If u have a good llmd try and have faith. It took my son two years and two months to get well from Lyme and suspected bartonella and he is totally well now 7 months after stopping all antibiotics. At times I wondered if he would ever get well. Heel pain is associated w bartonella. I have been told it can take a long time to get rid of bartonella-like at least five months. Each case is unique though and try anything that might help and won't hurt. Make sure the EMFs r not bad in his room. My son's bed had off the chart EMFs that I only discovered later on in treatment. Earthing.com has grounding sheets you can buy that apparently protect against EMfs by connecting you to the earth's energy while you sleep. We just started using these. I like them but not sure how much it is helping. Hang in there:-).

My son has seen Dr. L. I think that she is more lyme aware now but I was the one who pushed for Lyme testing last Spring. She ordered through Quest (neg). I did my homework and found another Doctor that ordered through Igenex (pos). She seemed honestly surprised that the results were so different. At that point, she suggested we see Dr. J. in CT. What gets confusing is that she also stated that yes, she's seeing quite a few kids with Pandas and Lyme - but - she never tested for Lyme until I brought it up. So, as others have stated, worth it to see her for the Pandas but you do need to rule out Lyme as well. My son did not improve with PEX and it's likely the Lyme is the reason why not. I am confused why she's not more on board with the Lyme since the end result mimics PANDAS often causing neurological issues (she is a neurologist). A good Lyme doctor will probably effectively treat for both anyway. I guess my final opinion would be to keep the appointment but be ready to pursue lyme testing as well (assuming money is not an issue). If money is an issue, I might rule out lyme first. bill

Congratulations and hang in there. Just think of how good you will feel in six months! 9 months into my Lyme treatment I felt ten years younger, which was better than I expected to feel. I had attributed some of my lack of energy to getting older and having young kids but it was clearly Lyme or babesia that I had for several years.

U can download it for 3.99 on amazon on demand. I did not try downloading it myself but I found it for someone else. It looks like it works! This makes I easier for more people to watch it. We don't have it available to rent in our area either.

that would be so disgusting! No you don't have to chew them! :-)

I just read a book called Earthing that says something similar about how we need energy from the earth but we do not get it living in homes off the ground and walking in rubber and wooden shoes. It was recommended by someone on this forum or the lyme forum and it is very compelling. No wonder going to the beach is so healing.

You are done with treatment when your symptoms have been gone for two months. I know many believe you never get rid of it but that is an awful way to think about lyme. I believe you can get rid of it but that you should also try to stay healthy after lyme (which you would want to do anyway) so as not to tempt fate or ask for problems. I stopped antibiotics in August after two years of treatment and I have not had any symptoms so I feel like I am finally well. I believe that the mind plays a huge role in illness and that it is better not to think it is still there when you have not symptoms. Pamela Weintraub told me that she has been well for over five years and that always gave me hope. If you read Cure Unknown you know that she was as sick as anyone so obviously you can get well. So many go to doctors who don't know how to treat lyme and coinfections so it is no wonder that so many never get rid of it. Also I am a big believer in a holistic approach to healing lyme-detoxing metals, boosting nutrition, etc. Finding a doctor who does this too can make a huge difference. The vitamin ivs (myers cocktails) that I got when I was at my sickest really infused life back in me. They gave me energy and therefore put me in a good mood with all those b vitamins. It also helped with detoxing the dead lyme toxins. These things helped immensely and I can't imagine how I would have felt without them. It reminded me of those old movies about the vampire biting someone and all the color would return to their cheeks after being bitten. That is how I felt after I got a myers when I had no energy and felt like I was 100 years old. So think positive and find a good integrative lyme doctor and you will get well.

Dr Paul Beals is excellent. He is a holistic medical doctor so he is a target sometimes because he does things differently (or., iv vitamins and minerals and chelation for heavy metals, etc.) He treated my whole family and got us well from Lyme. He is super smart and a really nice person. He works at nihadc.com on Mondays and Thursdays and in stevensville md (near Annapolis) the other days. I referred many people to him and they like him a lot.

That's technically what it means -that the past antibodies are not being created but some people make IGM antibodies for years. The band 31 being positive means she has had it at least a year because it takes a year for 31 to show up. It's nice to have a positive test for your knowledge as well as for insurance. :-)

Dr. J is a wonderful man for sure. He is just an amazing doctor. Yes you are right that anybody can get lyme again and again. I wish you could get immunity after going through this. Dr. J told me that ticks don't like him so there is something to what you are saying about certain people attracting them. Worrying about it is enough to drive you crazy although (I have relaxed considerably now that my son and I are well). Now I know you can get well. Dr. J told me that the second time you get lyme it is not as bad b/c you know the symptoms and you hit it early if that is any comfort. He told us it would take about 2 years to get my son well and it was 2 years and 3 months. There is a natural tick repellent that is sold by avon that has picaridin in it and the Lyme Disease Solution book recommends it. (SKIN SO SOFT Bug Guard Plus Picaridin Towelettes) Thats what we use. Deet isn't necessary and will only add to the toxic load that a child is dealing with. Some think that deet may actually attract ticks. We never see ticks so I can't tell if it works but we use it anyway. I am sure the ticks are out there. I think our family could have gotten lyme from mosquitos b/c we only have had one person with one engorged tick in the family, EVER, but tons of mosquito bites. We will never know of course. Other things you can do include washing your hair in a shampoo that has a smell from lavender, peppermint or tea tree oil. If you ever go camping (like anyone wants to do that again :-))) you could use the lice shampoo from Whole Foods b/c it has a scent that would repel ticks from the scalp. I am told by serious campers that it works really well but you don't want to use it more than once a week apparently. I will never camp again after getting lyme on a one night trip. It is so not worth it but the schools keep pushing these 3 to 5 day camping trips in the outdoor education program. They go to tick infested locations near where we live. On the camping trip I went on where my son and I developed lyme six people out of about 35 kids and parents developed lyme within weeks of the trip! I called to warn the camp and was told that over half the camp counselors had had lyme at least once. CLUELESS! Yet they continue to host schools on that ground (it is near livestock in damp and dark woods with tons of leaf litter, log benches and very high grass. Could you imagine a more high risk place to sleep in civil war era tents with no screens?? The camp is on federal land by the CIA and although I tried repeatedly to get the govt's attention about this risk nobody responded to my letters or calls so I assume children are still sleeping in those woods. I called the Park Service and got addresses to write to people and sent letters but never got any response. I doubt they sprayed the area. I assume that tons of people have gotten lyme at this popular camp ground for school trips.

Wendy - when you say look for the rashes...are you saying that we might see a Bartonella rash appear after we've started Bartonella treatment (we started Bactrim and Zithro combo on Monday)? Do you mean the "stretch mark" rash or any type of rash? I get a little nervous about rashes, since my dd8 is allergic to amoxicillan. I know Bactrim is not in the same family, but get nervous nonetheless... Would the rash be itchy? This morning, she was saying the back of her leg was itchy and felt something like a bug bite. There was a very small bite like lump. I don't think it's anything signficiant, but plan on checking later to see if it has turned into anything else. Thanks for your help. Kara Take a picture. It is possible that the antibiotics are killing something at the site of a bite and that is what she is feeling.

Sorry-that was a typo. I fixed it to say a "herx". Steroids suppress your immune system so you don't want to use them if you have any type of infection because it will give the infection an edge. I think I read that it can allow the infection to go deeper. . My llmd hates steroids. Mycoplasma is not easy to get rid of but a treatment for lyme should kill it. I have posted many times that I would not rely on a PANDAS doctor to recognize a lyme or other tick borne infection. They do not have the training or experience that a lyme literate doctor has. You can pm me if you want. I don't know where you live but if your child has any of these symptoms too you may be dealing with coinfections of babesia or bartonella: leg pains (calf or thigh cramps), sore soles of the feet, inability to get enough air, night sweats, fatigue, bad headaches, or sore ribs. At least review the entire symptom list on the ilads.org website (under treatment guideline by burrascano:http://www.ilads.org/files/burrascano_0905.pdf) to see if any of these symptoms ring a bell. good luck!

If it makes u feel better I would want to try the iv antibiotics first and then later do ivig because you may not need ivig after a picc line. U would not want to do both at the same time because it could cause a severe die off reaction and u would not know whether it was the antibiotic or the ivig that caused it. If u r able to avoid ivig that would b great because it is not known whether u can get Lyme or other diseases like babesia from the pooled blood product. I know someone who called to ask if they test the ivig infusion for Lyme and she was told they do not "because some doctors do not believe it exists." that is troubling if true. Even if they tested there is no reliable test for these infections.

The worsening could be a herx. I would avoid steroids because of the mycoplasma and possibly other infections. I'd see a Lyme literate doctor who understands mycoplasma and other infections to be sure you are not missing something.

We used slow release probiotics that we could take with antibiotics. As for detox chlorella pills are excellent at pulling out lyme toxins and bentonite liquid is another option. I had a lot of success with chlorella. My reading vision got bad after antibiotic treatment and my llmd told me my vision was worse b/c I had dead lyme toxins floating around. He told me to take 16 chlorella pills a day. I thought it was a little strange-the whole explanation but I did what he said and within 6 weeks I did not need reading glasses anymore. Miraculous. If the herxing is really bad the doctors advise you take a break for a day but if you can plug ahead that is good. If symptoms improve on the day off you know it was a herx. That's what Dr. Jone's office told me in the past. So often it is hard to know if what you are seeing is a herx (a positive thing) or the antibiotic is not working. The stopping and restarting makes sense when you don't know if you are on the right track.