Hopeny

You may want to reach out to Brian Fallon who is a psychiatrist who specializes in Lyme at Columbia. I would not use Columbia hospital where the former anti lyme head of the IDSA works, but Fallonau have some ideas. Robert bransfield in nj is another option to consider, Lyme psychiatrist

I wondered about that because I thought I had seen other posts from you. Lol i need to get better about keeping history straight and checking dates!

My dd missed 22 days of second grade. I would look at her S&S like you and could see her little body wasn't well. She spent a lot of time just resting and healing. My husband battled me too on it, part of histrying to pretend she wasn't ill. IThe school never said a word to me and there was no academic impact. Trust your mothers instinct on this one. Hugs to you

Typically IGM is current infection and IGG is past. That can vary for some infections but not sure for HHV6. My daughter had a low elevated IGG as well, from the research I did it seems most of the population has this. My integrative doc did not think it was a factor for us so I didn't research any further.

I think you mentioned you had numerous tick bites. Being that Band 39, a Lyme specific band, is positive it would be good to consider consulting a LLMD. Many of the symptoms you have described are consistent with what others experience with chronic Lyme. This may be why you are not getting well.

Wishing you all the best. Please keep us posted on how it goes.

Thats really alarming on the timing. Just to add that my friend was treated by a doctor in the hamptons for Lyme, he diagnosed her just by symptoms and treated her for with a good length of antibiotic. You may find a local doctor there who can help in the interim as my guess is it is pretty rampant there. The book lab 257 on plum island may be an interesting read for you once you get through this. New cases that are aggressively treated have the best chance for a full cure.

We are moving into a new house and the basement is waterproofed with an alumninum like insulation. the inspector recommended we test for mold, none is visible but he is concerned that this type of waterproofing could encourage mold. We have a limited time to complete the test so any recommendations for this area are welcome. Also if you could give me an idea what the cost should be. One company quoted me $350 per sample, which would mean a minimum of 3 samples and it seemed very open ended as they didn't know how many they would need. TIA!

I am not a doctor so this is not medical advice, this is just what we have used. Typically many LLMD's use combo abx, intracellular and extracellular. Bb is thought to morph into 3 forms therefore single abx not thought to be very effective in eradicating. Older DD with chronic Lyme has tested + for Ehrlicia, Anaplasmosis, Rocky Mountain Spotted Fever and Lyme, shows symptoms of Bartonella. Treated with Doxy 60 days, Augmentin/Biaxin combo 60 days, Zithromax/Rifampin combo (months) and supplements. She has also take Amoxicillin, my opinion (again, not a doctor) is that it is not very effective. Younger DD3 with bullseye rash took amoxicillin for 6 weeks, still had symptoms and tested IGM positive, then treated with Cefdinir/Zith for several months. Also took 3 days of Doxy for IGG+ Rocky Mountain Spotted Fever lab result. Not currently exhibiting pronounced symptoms so in wait and see mode. Older DD had concurrent strep, elevated ASO, Myco P. Both DD's have a complement immune deficiency. From my understanding cefdinir/zith is a popular combo treatment thought to be effective. Have you read Burrascano's guidelines? You can find them on ILADS.org, you may find them helpful. Good luck. Curious can you expand on the January tick bite? Where did it happen?

Hi I am sorry you are going through this. Please feel free to search my post on the Western Blot, bands 58 and 41 are not considered significant by most Lyme Literate medical doctors but due to outdated testing guidelines (you can read about this in Pamela Weintraub's book Cure Unknown) the test your daughter had showed positive. Since you had the test I am guessing at Stonybrook, if they have a result that shows all bands you may want to have a look through the results and see what other bands showed positive. The tests are extremely controversial and flawed. You may find that hospital affiliated doctors do not believe that anything longer than 21 days of treatment is required. Many of us, including research on monkeys that proved that Bb persisted after the "standard" treatment, have found that duration of antibiotics is not sufficient. My daughter had many similar symptoms that you are describing, was given 28 days of antibiotics, then went into a severe debilitating decline a few days after finishing the antibiotics that ended up in her needing a cane to walk and becoming suicidal. Major NY hospital affiliated doctors recommended painkillers and psychiatric medicines. Research I found recommended other options such as antibiotics which I much preferred to medicating my daughter with drugs not studied/approved for use in children. I would recommend considering additional testing for Lyme co-infections and if you do not see improvement possibly considering seeking second opinions from an ILADS doctor. Please note that your current doctors would disagree however as a parent we have the right to seek second opinions on health concerns for our children. You may want to take a look at the ILADS.ORG website. I highly recommend the book Cure Unknown, which was written by a medical journalist and contains many study references. I am not a doctor, these are just my experiences not medical advice.I wish you the best for your daughter. Curious though, where was she exposed to a tick in January? That is really quite worrisome.

Llm we are buying a house so I figured it was a good idea to check while we are doing the inspections.

Could someone advise what is the best testing to do for mold and how much is it?

Up to 50% of people don't get a rash. In my opinion waiting for symptoms to show up is like putting sandbags up after a hurricane comes through. My older dd never got a rash. Damage is done and can take years and tens of thousands of dollars to heal not to mention the suffering. I cannot think of one reason not to take 30 days of antibiotics as a preventative measure. Doxy also treats some of the other tick borne infections that can be fatal such as ehrlicia and Rocky Mountain spotted fever. My nephew contracted Lyme from a tick attached less than 12 hours. Please search on the thread for my post on The western blot, the tests are essentially unreliable. Many people remain sick for years because their doctors wrongly tell them they are negative for Lyme. Few doctors are adequately trained and experienced enough to diagnose and treat Lyme. Good luck.

My previous conservative ped told me it was fine to use for my then two year old. I use it for her pretty regularly. It does have some interactions which you can check at drugs.com

Sorry to be off topic but reslize i too responded on the wrong thread. Thanks S&S, I need to get the new Buhner book. She likes avocados from that list. The last time I tried a multivitamin she tanked but that was before treatment. She is on quite a number of supps now and just started arteminisin( I know Buhner doesn't like that) with edta for biofilms per new llmd. If you can believe it I completely forgot to ask about dds myco level during the while visit. I am curious how that will effect myco. Integrative upped enhansa and added carnitine. Something has got to work!

Dd is on carnitine now, she refuses to eat meat, I wonder if that counts as meat protein?

I am wondering if I should cut out the NAC, I think I am going to. As a distraction from our medical issues, I am logged in taking a break from pumping out my basement with my babysitter. Hubs is away and we are alternating sucking up the water with the shop vac and using the pump to empty it. It is a 20 gallon shop vac and I think we have filled/emptied it 20-30 times at least. We have a pathway filling up with water and I am trying to stop it from coming into the house as we are showing to tomorrow trying to rent it. In the meantime it continues to rain cats and dogs. Grrrrr!

Thanks LLM yes I did buy it from his office, the same mix. Mayzoo I read many warnings so am stressed. On the other hand, LLMD really felt it would be very beneficial. LLMD says compounded formula in very low dose avoids side effects. Going to try it tomorrow. LLM do you think it contributed your daughter's seizures?

New LLMD wants to start DD on this for yeast and Bartonella and general cleaning up biofilms, Babesia doesn't seem to be an issue. Stephen Buhner doesn't seem to like this herb at all. Curious to hear other feedback. Thank you

Hugs

My dd has it bad. Not sure where you are located but two llmds recommended Padulla institute in Connecticut. One llmd told me not to do vision therapy but to go to Padulla for prism glasses. Also a fortune. However llmd said school must be torture for her. I was going to do vision therapy but now thinking about trying to see Padulla, not sure where to get the funds though. Curious to hear what others think.

TAnna have you considered reaching out to Brian Fallon at Columbia who is a psychiatrist knowledgable about Lyme? Since your sons test came up positive with Lyme specific bands, perhaps a different approach may be what's needed as unfortunately the current treatment has not seemed effective. I'm sorry you are going through this, it must be very hard

Ok thanks for the history, due to the Lyme issue I would consider dr m in ct, though for full disclosure we just started with him. Out first llmd did only abx. Dr m seems to really get Lyme, what the symtkms are, and how to get rid of it. Dr o is also great, ideally would try to do both. Ain't going to be cheap though. Thats why we dont take vacations. For dr o there is an incredibly long form on the website you need to fill out before they will make appt, giving you the heads up on that as you may want to start it. Good luck

We see Dr B, dr o and now dr m. Could you give a brief refresh of your history and what treatments you have tried? Eg have you tried abx, combo abx, supplements etc? Just trying to get a sense of the protocols you have followed. My dd has pandas/Lyme. From posts I have read, though i am sure he is brillant, i did not get the sense that dr t knows Lyme well do we have never seen him

Lmpkin if you want a copy of the sheet where dr j talks about the bands pm me with your petdon email and I will send it to you. I feel overwhelmed pretty much on a daily basis, you're not alone