lyme_mom

Probably die off but take a picture for your llmd to see.

Is that one of those medications that also kills parasites? I know so little about parasites but they r apparently common w lyme patients and i wondered if it could be killing some in her gut. Sounds like some sort of die off reaction either way.

Just avoid an infectious disease doctor because they do not understand Lyme usually.

Smarty breathing issues are often babesia.

Beals in MD might do it but he won't treat long distance. i send his contact info.

Based on our experience this scenario screams lyme/bartonella/babesia. The chances that it is just a coincidence that both kids are having joint pain is not likely in my opinion. If you have one child with lyme you should test the whole family asap. That's what we did and all 3 kids were exposed and then I realized that their symptoms were related to TBD. My son had hip pain briefly and he was treated for lyme. He was the least symptomatic. Joint pain that comes and goes sounds like lyme, especially the hip. Lyme patients often have other infections like mycoplasma. I read that a very high number of lyme patients have mycoplasma so it isn't a stretch that they could have both. The heel pain sounds like bartonella as does the anxiety. Tightness in the chest could b related to anxiety or is it like air hunger-can't get enough air? Sweats are assocated with babesia. NExt thing I would ask is do you have or your husband have any symptoms that could be lyme symptoms? You'd be surprised what symptoms you can have an ignore.

Yes it sounds like a herx and augmentin and azithro treat Lyme and r used together.

I laughed when you called us your lyme family :-). I don't understand how integrative doctors can just avoid treating lyme b/c a large number of their patients are going to have it. I know your appt with Dr. Beals will be a whole different experience :-).

I hear you and I have a lot of sympathy for you. Dr J is excellent. A couple years ago when I told a llmd's wife that we were taking our son to Dr Jones she said "he will thank you someday." Well today my son is well and i wondered if that day would ever come many times. It is amazing how much can be handled long distance when you have an office like Dr Jones' that has really seen it all. It is so expensive too but at least it won't drag on for years and years because of what you are doing by going to an expert. Perhaps there is a holistic practitioner near you who could be of help like a naturopath, Acupuncturist or creative chiropractor even if they cant treat the lyme. We have a lot of options in MD and I tried a lot of things to help with symptoms and balancing the body. For example, I had the chiro check my son and the remaining headaches he had went away after he was adjusted. I tried Art testing for blockages in the body a la klinghardt and many other things. I think it all helped a little. Other ideas are reiki or cranial sacral massage, infrared sauna for detox, etc. You never know what a good practitioner can do to help so I always ran whatever symptoms he had by whomever we saw because sometimes you might be surprised who could help. Hang in there -u r not alone.

I agree with others that this sure sounds like lyme and or babesia. Air hunger, night sweats, thigh cramps, sore ribs and headaches can be babesia. Of course you can get headaches with either one. I had babesia and the fatigue was crushing. I had to take several small naps a day to get through the day when I was at my sickest but I sure would have slept longer like your daughter if I didn't have three kids to take care of. My antenna would go up with your other child, the one with PANDAS, because if your daughter has a tick borne illness there is a good chance that it may be a factor in your son's illness too. It seems to be a factor in a very large number of PANDAS cases. TBD's seem to affect whole families and it presents very differently from person to person. I would get to a llmd asap b/c the dizziness could be a sign of neurological lyme. My son had Bells Palsy and this might not have progressed to Bells Palsy if I or his former pediatrician had understood that his early symptoms of headaches and sensitivity to noise were red flags of LD.

I am confused about his position regarding antibiotics. He talks about iv antibiotics in a way that seems positive. Anybody know what he thinks?

So interesting! I had no idea how much klinghardt attributes to Lyme disease. I knew others have but didnt realize how much klinghardt does. Amazing that so many patients diagnosed with other illnesses tested positive for borelia. The stuff about the heart was more detailed than anything I have ever read. Finally an answer about the dangers of raw milk! I always worried that those cows in endemic states had to be infected w Lyme. Fascinating about how the spirochete has changed and is now attacking white blood cells. Wonder if it has anything to do w the tick experiments on plum island. The link to brain tumors in children-wow! Love how he recounts his own skepticism and anger regarding Lyme before he realized it was true. Thanks for sharing this Michael!

Absolutely! Or babesia too. Crushing fatigue is a symptom and taking steroids would suppress the immune system and help the bacteria. I would travel to the nearest best llmd asap. It's so treatable if u have the right doctor.

Debbie is supposed to be excellent but she is a nurse , not an md. Go see Beals and u will know after one appt if u would like to work w him. He treats symptoms not test results so u r fine going w out anlot of tests.0

Debbie is a nurse, not a physician.

My llmd and another local holistic md believe Lyme plus transfer factor is extremely helpful for Lyme. One doctor told me it gives u an immune system to fight Lyme and coinfections. Problem is everyone is out of stock-the manufacturer cannot keep up w demand.

He thinks they work well w pandas but he may have something else u can do. He has to be flexible because what works for one patient may not work as well for another. Certainly worth a second opinion.

I can tell you that you will have trouble finding a better doctor than Dr. Beals and we have worked with him for the past two years and really know him now. He is a wonderful, compassionate and extremely intelligent doctor. He loves his work and is passionate about it. I think the reprimand from the Medical Board may stem from a procedure they used to do to clean the blood for certain cancer patients. I am sure it never hurt anyone-the medical boards love to go after doctors who think outside of the box. Dr. Jones has been attacked for years and not one person ever accused him of hurting a child. I have a story for you that I think refers to the procedure that might be related to the reprimand. I happened to meet a family member of a former cancer patient of Dr. Beals one while I was getting an IV vitamin drip in his office. This man told me that they had been going to see Dr. Beals for over ten years b/c he had done such a great job with his father in law who was diagnosed with some blood cancer. Johns Hopkins wanted the father in law to participate in their program for cancer patients and the father asked if he could speak to someone who had participated in the John's Hopkins Univ cancer program from the previous year. All patients were no longer living so this man found Dr. Beals and figured he had nothing to lose to try a holistic MD b/c he sure wasn't going to live long if he did the Hopkins program. The man I met told me that his father in law went on to live another ten years and his quality of life was great and they were enormously grateful to Dr. Beals for this. He did some blood cleaning treatment on him which I am pretty sure they no longer do. He said that Dr. Beals and this man became friends over that time period. That is the kind of person Dr. Beals is so do not worry. I would not have a problem doing anything that he recommends. He addresses lyme with more than antibiotics. He heals the gut, detoxes heavy metals (so important b/c lyme hides in the body behind heavy metals avoiding antibiotics), fixes nutritional deficits (through oral and iv vitamins and minerals-believe this help ALOT! My daughter who is ten has done the Myers IV vitamin cocktail numerous times and loves how much energy she gets from it). Nothing he recommends will hurt you and he is actually kind of conservative and is also very sensitive to cost. Like someone else said, he LISTENS and decides with you what will be done. This is rare. He is also the least expensive llmd that I am aware of at 250 for the first visit. He doesn't spend as long as some other llmds might spend with you -some spend a couple hours, but then their fees are enormous. Beals gets the job done though and his first appt is adequate for an hour or more.

You should see a Lyme specialist (call or email ilads.org) so you can be certain there are no other infections you are not aware of. A good Lyme md may be able to figure this out even if it is not Lyme. The dizziness u mentioned can b a sign of Lyme as can the tics.

I hadn't heard about the protein either but I realized quickly that I needed something substantial in my stomach in order to take doxy in the am and i could not take the medication right before or right after the sandwich-had to be in the middle :-). I also took the smaller doxy pills, not the big blue ones. I don't know what the difference is but I think they might be less powerful. I tried the big pills once b/c they accidentally gave me them when I filled a prescription. I didn't like them and went back and had it switched. Could have been something else that bothered me but I really like the little pills that are slightly smaller than a round advil. Dr. Jones had my son take Doryx which is slow release doxy b/c it is easier on your gut. He just could not handle the doxy. That's another option for those who can't take doxy.

I avoided nausea by taking it in the am with an egg sandwich. I would often take a drink of kefir with it too and that helped. As long as you have food before and after it is easier.

Which one did you get Susan?

Thanks for your suggestions and well wishes everyone! I spoke to them and they said she may be able to get a cancellation due to the urgency of her situation because she is suicidal and has exhausted all that psychiatry has to offer (including electro shock which I was not happy about). Mary, I heard about Leo Shea and I called his office. His neuro cognitive test is about 3k (can't remember the amount exactly) and the Columbia University program is 5100. A large chunk of it is for testing that is billable to insurance, albeit out of network. I will find out tomorrow whether her insurance will cover any of these tests. The other psychiatric lyme option is Dr. Bransfield in Red Bank NJ. Of course getting an opinion from Columbia Univ would be more impressive to non believers like her doctors who think she was overdosed on antibiotics! I obviously don't know what they would say at Columbia Univ but I can't imagine that they will not think she has lyme or bartonella. She lives in a lyme endemic state pretty far from urban areas where you can find good doctors who understand lyme. I am so glad that we live in an area where we have our pick of excellent integrative physicians and complementary health experts outside DC. There must be literally thousands of people like this relative around the country who are going untreated due to ignorance of psychiatric practitioners. Jodie, I will keep that in mind about getting the records :-). I will try and go with her if she goes if I can get away. Thanks again. I will let you know how it goes! If you hear anything further please let me know :-). Thanks again for your suggestions.

Her Lyme test has a few INDs and positives? Which bands?

Thanks, Rachel, and thank you to everyone for the thoughtful posts and PM's. Yeah, I'm feeling a bit like a "wornoutdad" right now.... As folks here have advised, we definitely plan to try contacting an LLMD. Being a bit OCD about all this myself, I contacted ILADS a while back and they sent me contact info on one LLMD in our area (SW MI), but they didn't know if she accepts pediatric patients. Guess we'll find out next week. And I very much appreciate the feedback from the more "Lyme literate" folks on here. (I researched Lyme 4 years ago, when we thought that's what ds had, but it's pretty hazy now.) But I still do have a lingering question about this. Our original LLMD started Lyme treatment (doxy) 4 years ago as a precaution but when the Lyme tests were negative and the ASO was highly elevated, he diagnosed ARF/SC, later PANDAS, instead. The IGeneX results do appear borderline according to their lab report. And - right in the lab report on the IgM Western Blot that was positive - they state "infection with HSV, EBV, HCV, and/or syphillis may give false positive results." If IGeneX, who I think clearly is considered to have expertise in this area (based on the consistent recommendation to use them for Lyme testing), acknowledges that other viral / bacterial infections can skew the result, then isn't it at least plausible that GAS infection might do the same? Not saying we don't need to pursue Lyme further with another LLMD. We do, and we will. But here's my secret fear: if we're asked to stop the XR and rotate to new abx, and it really is PANDAS (remember the entire rest of our family still have elevated ASO, so our house is Strep Central), what if that does more harm than good? And other folks on the forum have posted about stopping abx when things were going well, seeing relapse, and then resuming the formerly effective abx without seeing the same benefit. That would be tragic to say the least! I realize a sharp LLMD may share the same fears and may say "stay on the XR until we resolve your family's ASO mystery, but let's add Abx A to the mix." And of course, we as parents always have a say in any medical decision. (Boy, have we learned that lesson in the past 4 years!!!) It just seems like the science around PANDAS makes sense, the animal model studies at Columbia and Tel Aviv seem to confirm the hypothesis, and it seems astronomically unlucky for our poor son to have both PANDAS and Lyme. Anyway, thank you all for sharing your insights. They're invaluable. My wife and I have a lot to think about this coming week!!! Worried Dad, those results seem pretty positive to me and the fact that your son is positive for erlichia only makes it even more believable. He has obviously been exposed to tickborne illnesses. I have read your postings over the past year with interest b/c I always think they sound like lyme disease. I believe you do not need a positive igenex test to start treating for lyme b/c the clinical picture is enough. I don't remember all your comments but the leg pain is something I recall. Certain types of leg pain can be associated with coinfections too. My son was also on augmentin xr for lyme towards the end and it works well but it will not get rid of lyme on its own. You need a cyst buster and possibly a third antibiotic to eventually get rid of it and more if there are coinfections of babesia or bartonella. I think this is great news b/c you will finally be able to complete his treatment and get him off antibiotics some day. My son was very sick and treated for over 2 years but is off antibiotics today. I would find a highly recommended llmd so that you don't waste any time or money with someone who is not excellent. If your son herxes or improves significantly on a lyme protocol then you will know you are on the right path. Good luck! We are rooting for you.