lyme_mom

Are u having trouble getting enough air? Feel like u r breathing through a straw?If so it can be a symptom of babesia.

\ Sounds great. We use a chiropractor who uses an activator to make adjustments. There is no cracking. He is amazing and we consulted him and other holistic practitioners during his lyme treatment to see if any symptoms could be related to something other than lyme or coinfections. This was very beneficial when, early on in my son's lyme treatment, his headaches persisted in spite of the aggressive lyme and bartonella treatment. Because lyme is treated based on symptoms I sought advice from holistic practitioners like our chiropractor to see if some symptoms could be taken off the "lyme" table. We were delighted when the chiropractor made an adjustment to my son's neck and the headaches were finally gone completely, thereby getting that symptom off the table to we could focus on what was left of the lyme symptoms. We also tried reiki, cranial sacral massage, food sensitivity testing and a gf/dairy free diet, acupuncture, autonomic nervous system testing through muscle testing, etc. I found that it was often surprising what some of these practitioners can do to help and it was not always what I expected.

Thanks for posting all this great info. I will definitely order the cd to learn about what they talk about at the conference. So interesting that there are so many sessions about the neuropsychiatric manifestations of Lyme Disease and other tick borne illnesses. Thanks PacificMama.

Leg pain can be caused by tick borne illnesses too. It is worth checking out especially if there is any chance it is worsening with prednisone which is contraindicated with tick borne infections. Steroids suppress the immune system which makes infections worse and can cause more symptoms. Just another possibility to consider.

Hi Michael, My sister has been very sick with lyme and our doctor suspected that something in her environment was keeping her sick with lyme. She had a mold sniffing dog go to her house and discovered that she has two forms of toxic mold in her house, the two worst kinds you can have. A couple symptoms she had were suggestive of a mold problem (eye pain was one that I remember). They had it removed and the vents cleaned and she is doing a lot better. Apparently mold in the house can interfere with a lyme or cancer patient's treatment. I know you have thoroughly researched all this stuff but wondered if you had heard about mold and lyme. Apparently this doctor has had a number of patients who were finally able to stop their antibiotics after getting rid of the mold in their home. I just had my house checked today just to be safe.The woman brought a dog that is trained to sniff out mold like a bomb sniffing dog. Fortunately she and her dog didn't much to worry about but we do not have the air samples back yet. We probably need to have our vents cleaned but that was all she said. Also, have you tried a rife machine yet? We hope to try one soon.

Crushing fatigue unrelieved by rest was my main lyme/babesia symptom. I took a lot of naps and when I was on mepron it got worse before it got better so that is definitely herxing. Then the brain fog, word loss, etc. kicks in due to all the die off, but that also goes away eventually. Hang in there!

So true. A very few doctors are making decisions that affect lyme patients all over the country. The reporter showed his bias when he said that most test are falsely positive, which is absurd. Makes me sick. Some day when they or someone they love gets lyme disease they will stop making these condescending statements about these patients. But don't worry they will make sure we get every vaccine that the drug companies dream up loaded with all sorts of toxins.

I have also heard/read HIV and Mycoplasma pneumonia can. I think they are different cd cells that are related to hiv. I was told that the only infection that they know depresses the cd57 count is lyme. I have also heard that mold can help keep a lyme patient's cd57 low. A mold problem in the house can keep a lyme patient sick.

I have never heard that band 31 is possibly a false positive so I will have to ask my llmd about this. Dr. Jones, the lyme pediatrician who has treated more kids with lyme than anyone in the world, told me that band 31 means that a person was exposed to lyme and it takes a year to show up. He and other llmds we have used have never said that 31 is possibly related to another infection and I have discussed band 31 with all three. Band 41 could be related to syphilis as you mention as well as a dental infection that is a spirochete. However, I am puzzled by the reference to band 31 in your post b/c I have been told that it is considered a very specific antibody for lyme. I had the band 31 confirmation test that you refer to but it was explained to me differently. I was told that it is used to look at an indeterminate band more closely to see if it matches a positive band 31 in their database. I see my llmd next week and will ask him about this and let you know what he says. My son's band 31 on the IGG was positive (not indeterminate), yet they still performed the confirmation test, which was also positive. This is what I found on a couple other sites... "IGeneX also now offers a new 30-31kDa Confirmation IgG and IgM test. If results from the initial Western Blot are positive for bands 30 or 31, it is possible that these could be due to cross-reactivity with several different types of viruses. In this confirmatory test, highly specific recombinant antigens are used to validate that the positive result is not due to cross-reaction with viruses." "Sometimes bands 30-31 can cross react with viruses such as EBV. A 31 kDa epitope test can determine if band 31 cross reacted with a virus or not." So, this was just my understanding based on what I'd read on other websites. Kenneth Singleton mentions in his book the various viruses that can cross-react on Lyme antibody tests, thus causing a false positive. The excerpt at http://www.lymebook.com/chronic-lyme-testing-and-diagnosis lists quite a few. I don't think these viruses have flagella, thus they would not necessarily be cross-reacting at band 41. Dr. Singleton doesn't specifically mention what bands they might cross-react with. I'll also ask my son's LLMD next time we see her. She does believe in differential diagnosis, as does the Lyme-literate ID doc that we saw, so my ds has been tested for many of the viruses listed to ensure they aren't a factor in his case. I think it's a good idea to get a thorough diagnostic work-up, just to be sure nothing else is being missed. In my son's case, everything else is coming up negative, so... all roads lead to Lyme. Thats interesting. I will let you know what my llmd says. I think the doctor you are seeing (if it is who I think it is) was trained by Dr. Jones. There are so few female lyme doctors :-)....

Did you know that sweats, particularly night sweats, are a sign of Babesia? Babesia is a tick-borne illness like malaria that is treated with anti-malarial medicine. The testing for Babesia is very unreliable as it is very hard to find in blood. I think there are 13 types of Babesia and the tests only test for two types: Babesia Microti and Babesia Duncani. This is considered a coinfection of Lyme Disease, although you don't have to have lyme to have Babesia. Babesia can also cause psychological symptoms and specific leg pains-thigh cramps, as well as air hunger (an inability to get enough air when you breathe). Babesia can also be present with no symptoms at all but it can make someone very sick if they have babesia and then they get lyme. Lyme can cause weird muscle and skin sensations and dark circles under the eyes as well. It would definitely be a good idea to see a lyme specialist to see if they think your son could have one of these tick-borne illnesses. The good news is that these infections are treatable with specific medications and lyme doctors know how to get rid of them. NC has a lot of lyme but the NC Medical Board is hostile to lyme doctors. I know of only one doctor in the state who will treat lyme. PM me if you want the name. Otherwise you will likely need to go out of town to get a consultation with a tick-borne disease specialist. Contact Ilads.org for a doctor who has been trained by the International Lyme and Associated Diseases Society, the group that most lyme patients look to for the best advice/treatment for these very sneaky tick borne diseases. You will also be able to see a good list of symptoms on the ilads website: http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf. If you would prefer, you could start with Igenex testing for lyme but I personally would go see a specialist asap. If these infections are causing the symptoms you would not necessarily need the ivig, just the right combo of meds to treat the infections. Good luck.

I have never heard that band 31 is possibly a false positive so I will have to ask my llmd about this. Dr. Jones, the lyme pediatrician who has treated more kids with lyme than anyone in the world, told me that band 31 means that a person was exposed to lyme and it takes a year to show up. He and other llmds we have used have never said that 31 is possibly related to another infection and I have discussed band 31 with all three. Band 41 could be related to syphilis as you mention as well as a dental infection that is a spirochete. However, I am puzzled by the reference to band 31 in your post b/c I have been told that it is considered a very specific antibody for lyme. I had the band 31 confirmation test that you refer to but it was explained to me differently. I was told that it is used to look at an indeterminate band more closely to see if it matches a positive band 31 in their database. I see my llmd next week and will ask him about this and let you know what he says.

My son had a picc line for for rocephin for five weeks. It accidentally fell out while he was sleeping or else he would have had it two months. I was glad he had it b/c he had Bells Palsy indicating CNS involvement and the iv rocephin crosses the blood brain barrier. It was quite stressful though. You need to be very careful with the line. No sports, swimming or yanking the arm. Even the cleaning of the bandage by the nurse can be stressful. Using the gloves to remove the large square of tape over the entry point without moving the cord is very tricky. Once the glove stuck to the line and we had to go get an xray to see if it was still in the right place. We didn't do all those other things during the iv treatment b/c he did not have babesia symptoms at that time. Your doctor must think Babesia is a problem for your child b/c bactrim, artemesia and mepron all kill babesia. Apparently they can also kill lyme too and I think bactrim is somewhat effective against Bartonella. We did add rifampin after a month b/c of bartonella symptoms and he immediately benefited from this. He always took four probiotics a day and that worked well for us (Integrative Therapeutics pearls). I don't know what all those things are on your list so hopefully you have the probiotics covered. I see one capsule at bedtime. What is the potency of the capsule? THe pearls we use have about 2 billion in them per pill. Once capsule would be nice though. The good thing about the ones we use is that I could give it to him with the antibiotics so whenever you can get them in them is ok. That has been nice. He did some of the detox stuff later b/c he had a filling removed by a regular dentist (I didn't know not to do this) and the muscle testing revealed mercury toxicity. I'd like to do more but he hates taking pills or the homeopathic drops. I don't think I could have gotten him to take all of that but if you can get your child to take all of this you need an award! That's a lot of work! I am sure it will help to do all of that but you have your hands full.

I don't know about those bands. I looked on my Igenex test and the only one that is double starred is 41 and that is not considered "lyme-specific". I don't think it looks good to have three of these though but I just don't know. I remember Dr. Jones telling me that he disagrees with the cdc criteria and he even had a problem with Igenex' way of determining who is positive. I can't remember the details of his comments though but the gist was that the really important markers for lyme are not counted and the ones that are not important are counted. So you could have five bands indicating you are cdc positive and they not be the right lyme specific bands. In other words he would not assume lyme from those bands. On the flip side you could have one lyme-specific band and be negative but really be positive. I hope I have represented what he said accurately. It was a year ago so I don't remember exactly what he said. Next time I see Dr Beals I will ask him about bands 58 and 66. Of course these tests do not test for bands 31 and 34 so I would definitely do Igenex or see a lyme doctor for an opinion b/c either one of those bands could also be positive and that would be enough in and of itself. Dr Beals is great. I think you will really like him. The band that will not be tested on a WB from your doctor--Band 31--was the kicker in Evan's dx. It is Lyme specific and will only show up if a person has had lyme over a year. Makes you want to scream "How in the world would there be an antibody in a person's bodyfor a surface protein that is Lyme SPECIFIC if Bb wasn't around!!! Dawn That's true.. Its crazy that all lyme tests do not test for this band. It means the person was exposed to lyme over a year before b/c it takes a year to show up in the blood.

I'd ask Dr. Beals about this. If he thinks it is necessary then you will feel better doing it. There is a naturopath in DC who does muscle testing for lyme and coinfections. I wonder if he could help check for an infection without the need for a scan.

Dr. Burrascano is probably the most well known and respected lyme doctor for adults in the country. That is considered a very good source of info about lyme! I give people that link often b/c there is a good list of lyme symptoms in there too.

I totally agree with Justine. I don't even use bleach or other chemicals to do laundry or to clean with.These chemicals like bleach can disrupt hormonal balance and they are estrogenic not to mention toxic. This is why I do not use them in my home at all. These chemicals in our homes and in our food are the reason kids are developing so early these days. I have heard that hydrogen peroxide with epsom salts is good for a bath. I would think that would do the same thing without the toxic side effects. It is supposed to be detoxifying. I cannot imagine soaking a child in a tub with bleach. The bleach could really irritate the genital area too and the fumes would be bad to breathe. I poured hydrogen peroxide in my sump pump last week b/c I smelled something musty. I called a mold expert and she told me to use hydrogen peroxide or white vinegar to clean the sump pump. It will kill any mold in there. It worked....the smell went away.

I don't know about those bands. I looked on my Igenex test and the only one that is double starred is 41 and that is not considered "lyme-specific". I don't think it looks good to have three of these though but I just don't know. I remember Dr. Jones telling me that he disagrees with the cdc criteria and he even had a problem with Igenex' way of determining who is positive. I can't remember the details of his comments though but the gist was that the really important markers for lyme are not counted and the ones that are not important are counted. So you could have five bands indicating you are cdc positive and they not be the right lyme specific bands. In other words he would not assume lyme from those bands. On the flip side you could have one lyme-specific band and be negative but really be positive. I hope I have represented what he said accurately. It was a year ago so I don't remember exactly what he said. Next time I see Dr Beals I will ask him about bands 58 and 66. Of course these tests do not test for bands 31 and 34 so I would definitely do Igenex or see a lyme doctor for an opinion b/c either one of those bands could also be positive and that would be enough in and of itself. Dr Beals is great. I think you will really like him.

It is depressing to watch at times but they all get better with the right treatment so watch it until the end. That's great that it is available through Netflix. I didn't know that. It really explains a lot about how widespread lyme is and how it can manifest itself in so many ways. Unfortunately it does not go into detail about all of the ways in which lyme can cause psychological symptoms (b/c the movie covers so much). They don't mention OCD, tics, etc. but a entire movie could be done just about the psychological/neurological effects of lyme. What I like the most about the movie is that it clearly shows how biased a few infectious disease doctors are who are involved in writing the guidelines for the diagnosis and treatment of Lyme Disease. This is a very important thing for people to understand. The whole process is very tainted with egos and financial conflicts and it is making it very difficult for patients to get treated properly for Lyme. The doctors who treat lyme disease like Dr Jones and many others are getting attacked and persecuted all over the country b/c of these flawed guidelines from the Infectious Disease Society of America that say that chronic lyme doesn't exist and that 3 weeks of antibiotics should be enough to treat lyme (what a joke). You all know how hard it is to get rid of strep so why is it so hard to believe that it can be this hard to get rid of Lyme, which is a stealth pathogen that knows how to change forms in the body to evade antibiotics. I think Cure Unknown by Pamela Weintraub is even better than the movie and she has such a great way of telling a story and a good sense of humor. Some people might not have time to read it so the movie is a good quick intro to Lyme.

With addiction (my understanding) is that they use high dose, so the opioid receptors are blocked continually- that's how they block the "high". But, low dose is supposed to only do a temporary block (while patient is asleep), causing the body to increase endorphin production. So with low dose, there should be an increase, not a decrease in pleasure feelings. It may be something you do want to try- its low risk and you can always stop it if it doesn't help. It has no permanent effects. That's right. The drug was used in high doses to detox heroine addicts. These addicts would not take their full dose and many had HIV. They noticed that their infections were under control or they were less sick on their modified "low dose" naltrexone. It helped their immune system. So its an old drug that they discovered as a new use. My good friend went to the LDN conference in Bethesda and has done a lot of research on it as a treatment for MS, cancer and other illnesses. She says it is considered a miracle drug for treating these illnesses. I know my llmd really believes it works. It seemed to help me and my family although it so hard to know exactly what helps when you are doing multiple things. It is important to have the right dose according to my friend (and to have it compounded by a knowledgeable compounding pharmacy). It can give you vivid dreams. My son and I have been on it a year and have had no problems with it. I will keep taking it if it is that helpful for fighting those diseases and lyme and it is not very expensive, at least at my pharmacy.

That's funny-llm's Saw Dr. B today (drove 7 hours there, 7 hours back!). He wasn't too concerned about the Lyme results for now, but definitely wants us to do the Igenex, so we'll get that done on Monday. He is concerned to see his ASO and Anti-DNASE b are still high, and thinks we probably need to change antibiotics. He also gave us a script for a sinus scan since that's the only thing no one has checked out and maybe strep is hiding there. He was very nice and thorough, and it was doable with dh behind the wheel DS is so tired of this routine, though. He is so sick of getting blood drawn, spending hours in the car, hours waiting, hours hearing people say pretty scary things about him... But, he's a trooper I guess now it's back to the waiting game! How long does it take to get results back from Igenex? Do they send you a copy or do you have to get it from the doc? It takes two to three weeks and they send it to the doctor. Poor guy. Let me know how it goes with the other Dr B.

Wow!-the poor guy. You are lucky that you know b/c so often a patient has the symptoms but the test results do not show the infection. I don't know anyone who tested positive for all three but I know many who have been treated for all three, including our family. The good news is that you will start to see real results but it will take a little time.

I don't know about those tests. He isn't ready to order a lyme test???!! How many more symptoms do you need to have?! Glad you are not deterred by this!

My llmd says that it is not normal for a five year old to have growing pains. Sounds like a herx reaction to me. You can get new symptoms during a herx or old symptoms can resurface. It varies from person to person. Foot pain can be bartonella, in particular the soles of the feet. Lyme joint pain is there one minute, gone the next. When I had it it felt like it was surfing through my body. I'd feel a sharp pain in my shoulder, then I'd feel it in my finger and then later in my hip. I will never forget standing in the grocery store once and feeling an incredibly sharp pain in my shin that lasted a minute or two and then disappeared. It was the lyme and all these pains went away with treatment. Well your description certainly matches my sons. It seems very distinct, brief, intense and then gone. I will discuss thyself with my doc at our next consult. Thanks again! exactly! good luck!

I am so glad to hear that your son is doing better! Thanks for the links too. I will read them. This is really an outrage. The conflict of interest is very similar to the conflict that the Infectious Disease Society of America (IDSA) has with lyme. Some panel members testify on behalf of insurance companies in denying claims for medical treatment for lyme. Others have financial conflicts of interest with the old definition of lyme (tests, failed vaccine, etc.). This should disqualify them from being on the panel that decides what the guidelines for diagnosis and treatment are. I am very concerned about the hostility in the medical community regarding differences of opinion whether it be about vaccinations or about lyme. Many doctors take it personally if they think a patient should not be treated for lyme. The arrogance is shocking. BTW my son was tested for antibodies to either measles or mumps by dr jones and he doesn't have any of one of them (can't remember which). Dr Jones told me to get the vaccination but I have put it off. My son had all the MMR vaccines but it looks like they didn't work. My holistic MD said I should get the missing vaccine as a single shot as long as it is mercury free. My son is not sick (was treated for lyme over a year ago and was never that sick). What do you think about this?

That's funny-llm's