PacificMama

So many beautiful things written by all of you on this thread. Much needed. I get SO TIRED of of the energy that is put into disproving just about everything that encompasses these infections (testing; diagnosis; treatment, llmds... and on and on). Yes: Multiple Chronic Infection Syndrome. Not for all, but for many. Dabel, my heart goes out to you -- and to everyone who has a story just like you. Please hang in there... I know you will be posting positive updates here soon. My older daughter is a lyme treatment success story. My younger daughter is recently diagnosed -- which led us to realize that we are dealing with congenital situation as are so many here. This is a relatively small lyme community here on latitudes. But please know that the lyme community in the U.S. is large, loud, organized and strong. There is a lot of information available, and a lot of support available if you need it. Please contact your local support group if you ever need anything! (see link). http://www.lymenet.org/SupportGroups/UnitedStates/ As to your son, please ask your doc for advice. But the hope is, once he starts feeling a bit better, he will be more willing to do the treatment. In the mean time, bribe him with whatever works. All the best. Mary

The CDC is not in the business of approving, or disapproving, of tests or labs. So I don’t know what you mean when you say that. They sometimes offer their opinion, but they do NOT do any sort of approval process. Second, the CDC is the first to say that lyme is a CLINICAL diagnosis. They say a lyme diagnosis should not rely on lab results. Please see their lyme page for this information. Perhaps you are referring to “CDC positive” on a western blot (where a person tests positive for 5 or more bands designated by the cdc). This was established by the CDC for REPORTING PURPOSES ONLY, and has nothing to do with whether a person is actually positive for lyme. But this is often much misunderstood by physicians and the general public. And again, short story is that the CDC designated bands do NOT include the 2 most specific bands for borrellia, so many labs don’t include them on their western blot test. The IGENEX western blot does include these 2 bands (which is why really knowledgeable lyme doctors use this test). Oddly enough, the CDC doesn’t include these 2 bands because they were so specific to borrelia that they were used in the short-lived lyme vaccine that came out some years back – and the cdc felt like they had exclude these 2 bands because if someone had the vaccine and then took the western blot, they might get a false positive. Also, regarding the Cunningham test, I'm not sure if you understand that the antineuronal antibodies that are tested for are NOT specific to strep. Please clarify this with her if you need to. (they test separately for strep specific antibodies). The CamK and 4 Antineuronal antibodies that are tested for are not specific to any infection. Dr. Cunningham knows of several different infections that will raise these levels: strep; lyme; others. This has been stated by her and verified several times. My daughter who was lyme (cdc positive too) was one of the lyme patients asked to participate. She had high camk, and high antineuronals. Never, ever strep. Tested repeatedly for titers -- never had one strep illness, never had one positive titre test. Please, you are stating your experience with PANDAS. But much of what you are posting about lyme is flat out wrong.

Wow... this is a whole lot of opinion and misinformation from a "new" poster who just joined a couple of days ago. hmmm

Not even sure what this means... "non approved government test"? Igenex absolutely has to have government certifications to operate, and consistently passes their inspections and certifications from the appropriate agencies. They post this information, and their licenses, on their site: http://igenex.com/files/QA_PACKAGE_2010.pdf

Love hearing all the positive updates today! (Congratulations LLM... wonderful news for you too!) Mary

Glad to hear the positive update! I read your other post -- I did not realize that your daughter was in a wheelchair at one point. You must be so happy with how far she's come. Look forward to future updates! Mary

Melinda, Such great news! I remember, what seemed like not too long ago, when you were in a desperate place with your daughter. It's so wonderful to see how far she's come. Mary

Hi Marcela, Please check with Canadian Lyme Disease Association: http://www.canlyme.com/ Alternatively, check with Oregon Lyme Disease Assoc for help finding docs in Washington: http://www.oregonlyme.org/ You could check the Helpful Links folder above for more info. Good luck! Mary

K-Mom... awesome news! Keep us posted. And I agree about hearing about the epidemic of young kids on psych meds. It's heartbraking, and I definitely think there is an infectious componenet to much of it. Mary

Hi Susan, Just wanted to add another message of support. Hang in there! I would just say that it is important to stay in touch with you doc and report all of these things (in case you hadn't done that). I hope that even though you are doubting yourself now, you think back to your first month and the improvement you saw with treatment. That's not a coincidence. Treatment for these infections can be a windy road... but you'll get there! Mary

Hi Momaine, I think you have made a great choice. Dr. J was/is my daughter's doc, and we owe him for essentially saving her when the rest of her docs would/could do nothing. Yes, get all your files to him ahead of time. He will review before appointment. My one tip, and I do this for any doc, is to put togther a simple chronology going as far back as you think is relavent (even birth). I do 2 or three columns: Date; Notes; and maybe meds started/stopped. I bold very relavent material. It just makes it so much easier to scan, and of course I keep it updated. He gives such an unbelievably thorough exam, and will get you started on an appropriate plan if warranted. My only other thing to offer would be that while I think he will be invaluable to you right now, he is of course up in years. It is just prudent to have a plan B doctor for the future. That may be Dr. B in a pinch, but ideally should be a llmd that follows Dr. J's protocols. Best of luck! Mary

Thanks, that was helpful. I'm trying to come up with a protocol for my little one, who is new to all this. I think we will still give binder (either clay or charcoal) away from everything, as she does not take as high a dose of probiotics. Well, you know I'm the big magnesium booster. Maybe it was my older daughter's particular symptom set, but mag was one of the best things we did for her to get her 'round the bend. Whenever we slacked off, it showed. But so hard to do "everything"! Something's gotta give at one time or another. Mary

Thanks (for some reason I thought you all also took charcoal). Do you know why it's OK to take your probiotics with the clay? My impression of binders -- whaterver kind -- was that they needed to be taken away from everything (supps, meds, etc). Is that not true of clay and probiotics? Sure would make things easier if that's the case. Mary

Good point about counteracting the effects of the clay. Wendy, what brand of clay do you use? Also, could you remind me again if you use this every single day, or do you alternate the clay with other binders? thanks, Mary

Our dosing has been lower than that. But the important thing with mag is to start with lower dose and gradually increase. Too much = loose stools. The Calm products are good because they give mag in appropriate combo with calcium -- and don't contain the artificials.

This was something sent around by the president of the Empire state lyme disease association. It is true that ticks can carry nematodes/ worms, and true that they can pass them along to humans (along with all the other diseases that they may harbor). However, it is "theory" only by some that there may actually be this type of "farming" relationship that exists whereby the nematodes have a vested interest in keeping the spirochetes (lyme) around in the human host. In any event, some lyme docs are more keen to address the issue of worms and other parasites, and other lyme docs simply don't.

Thought this was interesting enough to post. It came around in one of my lyme newsmails. I often see people on lymenet post that until you tackle the worms, you won't get the cure. I do remember that in Dr. Corson's talk at ILADS this year, she told the story of how Willy Burgdorfer (who "discovered" borrelia burgdorferi and hence it is named after him) was really looking into nematodes in ticks when he then found the borrelia. Here it is... it's not for the squeamish! Mary ------------------------------------------------------ Nematode Spirochete Farmers In 2000, the World Health Organization (WHO) reported that over a billion people are at risk for parasitic worm infections (filaria). 120 million people are infected with parasites in more than 80 countries (Africa, Asia, Central and South Americas, and the Pacific Islands). Of those infected, 44 million suffer filariasis symptoms. Nematodes are parasitic worms which receive nourishment and/or shelter from hosts. There is a theory that nematodes ‘farm’ smaller organisms like the Lyme Borrelia spirochetes, similar to the way we humans farm cows or chickens, feeding and protecting them so we can later eat them. Nematodes may live symbiotically with spirochetes in humans! Ticks and other vectors harbor numerous parasites: large ones referred to as worms (filaria) and microscopic bacteria, viruses, protozoa, fungi and microfilaria. Ticks in Connecticut and New York do carry nematodes according to Doctors Willy Burgdorfer, Eva Sapi, and Richard Ostfeld. Can worms destroy American health, as in WHO’s reported 80 countries, or as in our American pets? The answer to the question, “Can nematodes wreak havoc as human parasites?” is supposedly unknown, at least in the USA. Well, can nematodes prevent recovery from “chronic” Lyme and tick-borne diseases? Puppies are de-wormed soon after they are born. Dogs typically and quickly recover from Lyme disease after antibiotics, perhaps because of their early-life and subsequent regular de-worming; there are no nematodes harvesting spirochetes in their canine bodies. If nematodes work against antibiotics by protecting and increasing spirochete population, then antibiotic therapy may eradicate ‘loose’ spirochetes but not those under nematode farmers’ protection. If a nematode-Borrelia symbiotic relationship exists, Borrelia can screw its way out, escape the nematode farm, free to wreak havoc on us. If nematodes are present, then a huge amount of antibiotics over a long period of time may only suppress bacterial growth. Symptoms will be somewhat relieved, a modicum of health will be maintained, but there is no cure while nematodes live to raise new spirochetes. So for the duration, surviving nematodes will keep on farming. Can this proposed process explain the cyclical nature of Lyme in certain cases? Antibiotics destroy spirochetes, some nematodes starve and die, but survivor nematodes still farm. A human host might suffer a relapse or flare-up if a bountiful harvest releases excess spirochetes into the body. Antibiotics relieve our symptoms by killing spirochetes. Antibiotics also decrease the nematode’s food supply resulting in nematode starvation and death. If enough spirochetes are destroyed and enough nematodes die of starvation, eventually there might be no one left to run the farm. A patient recovers. However if nematode filaria causes some chronic Lyme, it might be more prudent to stop the farmer. Ivermectin causes starvation and death of nematodes by interfering with their ability to eat/digest. Although antibiotics have been our primary defense, a doctor once told me Ivermectin was the best medicine for Lyme disease. Interesting to note that since 1982, filariasis victims in WHO’s reported 80 countries were given millions of free doses of Ivermectin as part of a Global Health Initiative, but in the USA and Europe, it is typically not prescribed. A surging idea is that all we need is to live healthy and take vitamins and supplements but I suspect that what would CURE chronic Lyme would be a remedy for the cause! Other causes may be virulent Borrelia, Mycoplasma, Morgellons, Candida, other Fungi, Molds, XMRV, (Xenotropic Murine Retrovirus) and/or other microbes or filaria. The average chronic Lyme patient suffers a gradual decline into poverty and a lifetime of pain and debilitation. Find the cause, treat and have compassion. Eva Haughie EMPIRE STATE LYME DISEASE ASSOCIATION, INC

All types of sleep dysfunction can occur with lyme. Are you using magnesium supplement? This was very helpful for my daughter's restless sleep / restless leg problems. Also good for so many other things, and folks with lyme are often deficient. Kids Calm mag is a good choice for children.

Yes, common in lyme treatment. Just part of the possible migrating joint pain that can occur. My daughter had the big toe pain too.

Regarding Igenex, below is posted a follow up to the article I believe you may be referring to. Igenex is the most sensitive and complete lyme testing that is currently available for lyme. Period. But because it is lyme we are talking about, they of course will become wrapped up in the current controversy that exists for testing and treatment. As for co-inections, other labs do a more sensitive test for some co-infections. *And yes, there are plent of "negatives" that come out of Igenex, as some here can attest to. But ALWAYS, lyme is a clinical diagnosis made by an experienced physician. Here is the response: A Letter from IGeneX Labs CEO, Nick Harris (CA) I am pleased to announce that IGeneX, Inc. recently passed two inspections on September 7 and 8, 2005, for its biannual recertification from the State of California. A federal inspector also arrived simultaneously, indicating she was present due to the NY Times article August 23 which had made allegations against IGeneX laboratories. The inspection was intense, with a focus on the Western Blots which had been cited in the NY Times article. The lab has been fully recertified, and the inspectors clearly saw the allegations were without merit. Despite a volume of letters to the Times after the article by patients, groups, and doctors in support of IGeneX, nothing was printed by the Times. IGenex thanks all the Lyme community for your support. Perhaps the Times will relent and print another piece on this issue. Sincerely, Nick Harris CEO, IGeneX Labs Palo Alto, California

To all lyme inquisitive folks: Nearly every practicing doctor on the lyme front would take issue with much of what is presented here. That is, the doctors who actually practice exclusively in the treatment of tick borne diseases. The ones who TREAT hundreds and thousands of patients each year. The world is full of a whole lot of of once incredibly sick people, with IGM positive tests, who regained their health and life with TBD treatment. Dr. Cunningham is a lovely and smart person -- but the information presented here is erroneous in so many ways. Quite honestly, I quite like Dr. Cunningham and I’m a little surprised to see the sources and science that she cites here. It’s disturbing to me, especially when I know that she is working with some of the top lyme doctors right now (that is, including some of their patients for her study). The information that she cites about refuting congenital transmission is particularly shocking. She obviously does not have the current studies documenting transmission, and is disregarding the long held knowledge by practicing lyme doctors that this is a VERY REAL occurrence. Borrelia babies are not always born extremely ill at birth – this is just wrong. Additionally, as it often gets overlooked – it is NOT just borrelia that plagues people. So many other infections to consider. I’ll spare everyone my thoughts on the rest of it. But I will just make a plea for people to get themselves, or their child, face to face with the best and most knowledgeable medical doctor they can find and afford. In whatever area of specialty you seek, find someone who actually practices that area day in and day out. An MD, medical doctor, someone who is trained in clinical diagnosis and treatment. Someone sympathetic to your plight. The irony of this is, well, ironic. Just about every disease mentioned on this board ultimately relies on a clinical diagnosis. And in the end, the proof is in the pudding. Are you getting better with treatment? Best wishes to all for a healthy and happy new year. Mary

Wilma, I've read a bit of your postings. I'm not sure of any specifics in your daughters case, but certainly some of what I have seen you describe could be the result of lyme or related pathogenic infections. (not saying that's what it is, but just that these infections can cause those symptoms) What state / part of the country do you live?

Saw this the other day in a lyme email. The new study is "controversial"... surprise. Here is a short excerpt with link: Luc Montagnier is applying unorthodox ideas to the treatment of autism. With support from the Autism Research Institute (ARI), based in San Diego, California, the Nobel laureate is about to launch a small clinical trial of prolonged antibiotic treatment in children with autism disorders. The trial will also use techniques based on Montagnier's research into the notion that water can retain a 'memory' of long-vanished pathogens, and that DNA sequences produce water nanostructures that emit electromagnetic waves, published last year. But experts are critical and worry that the nobelist's status may lend unwarranted credibility to unconventional approaches to autism. http://www.nature.com/news/2010/101208/full/468743a.html

Great info... thanks for posting.

Yes, I understand your thought on relating it to the total abx dosage. I just wanted to post a caution on the zith specifically because of it's exceptionally long half life in the body (68 hours). Hope he is feeling better. Remember, there are the cyclical flares in symptoms that will continue until treatment is complete. I know... it's hard to sort it all out sometimes. Mary