madteaparty Posted June 27, 2014 Share Posted June 27, 2014 As it happens I am out of the country with my eldest. DH is dealing with onset of Lyme as well as our 3 year old :( He started on the doxy but it is well outside the 72 hr window. He has symptoms of the disease already: the rash, the fatigue, lymph nodes pain, headaches. Is there anything we can do, besides the abx? This is our first go around ever since moving to a Lyme prevalent are exactly one year ago. Thanks so much Quote Link to comment Share on other sites More sharing options...
Spryte Posted June 27, 2014 Share Posted June 27, 2014 A few quick thoughts: Double check the dose of doxy. It needs to be high enough to be bactericidal vs just bacteristatic (meaning it needs to kill the bugs rather than just stop them from replicating, which could make him feel better for a time, but then relapse later). Also, a minimum of 28 days on abx, to cover the entire life cycle of the spirochete, as abx only kill the bugs during particular parts of the life cycle. You might check the latest Burrascano guidelines for the doseage, I don't remember it off hand, or maybe Lizzie will post it for you. :) (Hi Lizzie!) Take your abx with food and plenty of water, away from dairy. Sit up for at least 30 - 60 minutes after taking them. Take probiotics! And in addition to the usual, take Florastor (S. Boulardii) - you can pick it up at the drug store or order on Amazon. Believe me, you don't want to risk C. Diff (Lyme *and* C. Diff survivor here). Take your probiotics 2 hours away from the abx. I hope the 3 yr old is not on doxy? There are better options for kids. More later, in a hurry, but wishing your DH (and your DD) well!!! Quote Link to comment Share on other sites More sharing options...
madteaparty Posted June 27, 2014 Author Share Posted June 27, 2014 Oh no, 3 year old doesn't have Lyme, she is just her 3 yr old exuberant self ;) we are crazy about tick checks on them but not on self apparently. Is there somewhere we can look up doxy recommended doses? I'm in the process of finding a Lyme dr but so far he has only been seen by our family doctor in NYC (to her credit, she did say Lyme right away and ordered the abx). The further wrench is that my DH had juvenile arthritis, was in remission forever. We're worried it will come back. Thanks ever so for your post. I had fresh probiotics in the fridge but not the specific one u mention Quote Link to comment Share on other sites More sharing options...
Lizzie in Ma Posted June 28, 2014 Share Posted June 28, 2014 From Dr. Horowitz's book in it's appendix this protocol hits all three forms of the spirochete and well as the biofilms it forms and prevent the establishment of a persistent infection. I bought our primary care this book and this is what she does now always. The other problem is co-infections which are the norm, not the exception. Testing is highly inadequate for them (as it is for Lyme as well) and they tend to also be a clinical diagnosis. If he doesn't improve on the protocol, there is a co-infections mucking up the works. Probiotics, as Spryte said, are crucial lemon water can help detox his system and epsom salt baths a B complex vitamin because the B's get depleted by the meds I wish you all the best Quote Link to comment Share on other sites More sharing options...
LucyStoner Posted June 28, 2014 Share Posted June 28, 2014 Nothing to add, just want to say that I hope his treatment goes well. Quote Link to comment Share on other sites More sharing options...
Crimson Wife Posted June 28, 2014 Share Posted June 28, 2014 I would look into Cold Laser Therapy as an adjunct to the antibiotics. Quote Link to comment Share on other sites More sharing options...
madteaparty Posted June 28, 2014 Author Share Posted June 28, 2014 Thank you everyone. He has deteriorated fast. From headaches to swollen/ painful lymphnode to classic rash to knee pain to being bedridden unable to care for our 3 year old (I am on my way in from overseas and our old nanny stepped up) to not being able to keep even water down. Is such complete breakdown normal? I'm still trying to find a local doctor, but of those meds posted, he is only on 100 mg of doxy twice a day. Quote Link to comment Share on other sites More sharing options...
amazzie Posted June 28, 2014 Share Posted June 28, 2014 I used a herbal protocol by Stephan Buhner....http://buhnerhealinglyme.com/ for six months and it was helpful, but I was unable to continue due to detox issues. I am now using a very diluted cinnamon essential oil. Anytime you kill lyme it makes you worse in some way. As it dies it releases toxins into your system. Quote Link to comment Share on other sites More sharing options...
Crimson Wife Posted June 28, 2014 Share Posted June 28, 2014 Prayers for a quick and complete recovery. Quote Link to comment Share on other sites More sharing options...
kewb Posted June 28, 2014 Share Posted June 28, 2014 If you need a Lyme doc in the city I love who we are using to treat my dh now. Quote Link to comment Share on other sites More sharing options...
Katy Posted June 29, 2014 Share Posted June 29, 2014 Listening closely. I got diagnosed a little more than a week ago and I'd been tired & headachey & had the rash but no real other symptoms except for itchyness & hot skin if I go outside (in the shade) for too long. Today I got really dizzy and started having leg cramps when we were out and about. I tend to get low blood pressure though, so I thought maybe I just hadn't eaten enough salt or drank enough water today. Quote Link to comment Share on other sites More sharing options...
Lakeside Posted August 30, 2014 Share Posted August 30, 2014 A few quick thoughts: Double check the dose of doxy. It needs to be high enough to be bactericidal vs just bacteristatic (meaning it needs to kill the bugs rather than just stop them from replicating, which could make him feel better for a time, but then relapse later). Also, a minimum of 28 days on abx, to cover the entire life cycle of the spirochete, as abx only kill the bugs during particular parts of the life cycle. You might check the latest Burrascano guidelines for the doseage, I don't remember it off hand, or maybe Lizzie will post it for you. :) (Hi Lizzie!) Take your abx with food and plenty of water, away from dairy. Sit up for at least 30 - 60 minutes after taking them. Take probiotics! And in addition to the usual, take Florastor (S. Boulardii) - you can pick it up at the drug store or order on Amazon. Believe me, you don't want to risk C. Diff (Lyme *and* C. Diff survivor here). Take your probiotics 2 hours away from the abx. I hope the 3 yr old is not on doxy? There are better options for kids. More later, in a hurry, but wishing your DH (and your DD) well!!! Is there somewhere to find out the dosage differences? I found some information that lists different antibiotics as either bacteriostatic or bactericidal, but not different dosages of the same antibiotic to be either one or the other. Quote Link to comment Share on other sites More sharing options...
Lakeside Posted August 30, 2014 Share Posted August 30, 2014 Quoting here from our Lyme "Bible" by one of the foremost experts in the field, Dr. Horowitz "in the case of an uncomplicated EM rash with no systemic symptoms according to scientific literature ~75% of patients are cured with a 3 week course of doxycycline 1-200 mg BID. However, if a patient has multiple em rashes, stiff neck , headache (central nervous system symptoms) or tingling/numbness in extremities than the organism has disseminated and one month is insufficient since these patients go on to have persistent symptoms. Also, the three week course of doxycycline does not address the cystic forms and allows spirochetes to survive. (this is what happened with our youngest btw who is now back in treatment using the protocol below) Although 3 weeks of doxy or ceftin (500mg BID) cures a significant percentage of uncomplicated em rashes the biology of borelia suggests that it may be worthwhile to offer patients the following regimen. Month One plaquenil 200mg BID doxycycline 100 mg BID, nysatin 500,000 units two BID (to avoid yeast issues from meds) with flagyl or tindamax three days a week BID dosage based on body weight as well as serraptase one BID (amazon or nutramedix) Month Two Plaquenil 200 mg BID Omnicef 300mg BID Zithromax 250mg BID 4 days a week with either flagyl or tindamax pulsed the other 3 days continuing nystatin and serraptase" this protocol hits all three forms of the spirochete and well as the biofilms it forms and prevent the establishment of a persistent infection. I bought our primary care this book and this is what she does now always. The other problem is co-infections which are the norm, not the exception. Testing is highly inadequate for them (as it is for Lyme as well) and they tend to also be a clinical diagnosis. If he doesn't improve on the protocol, there is a co-infections mucking up the works. Probiotics, as Spryte said, are crucial lemon water can help detox his system and epsom salt baths a B complex vitamin because the B's get depleted by the meds I wish you all the best Is this information from this book: http://www.amazon.com/Why-Cant-Get-Better-Solving/dp/1250019400/ref=sr_1_1?ie=UTF8&qid=1409412031&sr=8-1&keywords=richard+horowitz ? Thanks! Quote Link to comment Share on other sites More sharing options...
Spryte Posted August 30, 2014 Share Posted August 30, 2014 Is there somewhere to find out the dosage differences? I found some information that lists different antibiotics as either bacteriostatic or bactericidal, but not different dosages of the same antibiotic to be either one or the other. Try googling Burrascano's guidelines. Find the latest version. They might have them posted at ILADS main site. I will pm you in a bit, posting in a rush. Quote Link to comment Share on other sites More sharing options...
Lakeside Posted August 30, 2014 Share Posted August 30, 2014 Try googling Burrascano's guidelines. Find the latest version. They might have them posted at ILADS main site. I will pm you in a bit, posting in a rush. Thank you so much! Quote Link to comment Share on other sites More sharing options...
FaithManor Posted August 30, 2014 Share Posted August 30, 2014 Tons of rest. Keep him hydrated. Do not let him have any food or supplements that contain calcium two hours before or after his meals. Calcium interferes with the absorption of many of the drugs used to treat Lyme. FInd a doc with Lyme's experience. If you are in Michigan, try Beaumont hospital. They've got some amazing doctors down there that have extensive experience with things like Lyme's. Wishing him a speedy recovery. My dh had it three summers ago, but we caught it quickly...he found the engorged tick on his neck, and I had an appointment for him nearly immediately. He did not have a rash - some people never get it - at the time I called for the appointment, but it did develop in the 24 hrs. that lapsed between removing the tick and getting to the doctor. The doc was experienced and said he would have prescribed even if dh had not sported the rash. He gave us a protocol for dh - 8-10 hrs. sleep per night, 16 oz. of water every hour until 8 p.m., cleansing diet to support his immune system so no sugar, only citrus or coconut for fruit (he supports the use of coconut to eat and coconut oil for cooking because of the anti viral, anti parasitical qualities found in coconut - it was the only thing he ate that was sweet besides bell peppers, sweet potatoes, and carrots), large amounts of green veggies, seafood, eggs, and chicken or turkey and lamb for meat based proteins because of the ease of digestion...no beef, no pork and the seafood was fish but not shellfish and non farm raised, a large multivitamin to be taken with meals, probiotics to support digestion. It was a juggle to plan his eating around his meds. It was a six week regimen. Outside of a little headachy and tiring easily, he had no other symptoms and has been fine ever since which I attribute to beginning the treatment before he became symptomatic. My dear friend, on the other hand, had terrible health problems for two years and kept sticking with her GP who wasn't getting any answers. When she finally went to U of M medical center, they determined she had lyme's and probably for two or more years and LUPUS. We all thought she was going to die. But, they brought her through and she is doing a lot better. That said, I do think that the docs at Beaumont are every bit as good, and frankly, the hospital staff at Beaumont is extraordinary, the treatment in general in terms of emotional support is in my opinion, much better. Sometimes at U of M, you feel like a research lab rat and not a person. Quote Link to comment Share on other sites More sharing options...
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