Suzan

Thank you LLM! Except for the fever, what you had sounds very similar to what she is experiencing. I took dd in today and he agrees it's not meningitis and is a bad virus. She is in a lot of pain today. Doc said if it is not gone in a week to look into lyme again but otherwise he'd expect it to be gone by the end of the week. I am worred about lyme though since we are off abx. But, this afternoon I find myself getting a headache and some weird pains so maybe I'm getting the virus too. Hopefully not! Susan

So dd10 who has a history of joint pain and limb pain with lyme has had no pain for a long time now. Yesterday she suddenly developed a headache, back ache, neck pain, aches all over and overall not feeling well and a rash on her torso. It looked like meningitis possibly or the flu but she never developed a fever. Since urgent care was closed I decided against ER unless she got a fever which she never did. This morning she mostly has joint pain in her wrists, elbows and ankles, tired and still has head/neck/back pain. I guess it's a virus but how would I know if it's a resurgence of lyme? We have been off all abx and only doing natural treatment for 4 months now. Overall I believe our natural treatment is working great. We are going to urgent care this morning and will call our wellness doc who is treating our lyme after that. Susan

Nancy - Totally amazing and congratulations! Your dd always reminds me of my dd10. Her primary remaining symptom is high anxiety/ocd too. We are treating with Kavinase but we need to find the next piece of the puzzle. She just had a bladder infection but otherwise, she has been infection free for at least a year and did not get strep this year. Kim - when my girls would have amox when they were younger for sinus, ear, etc. infections, it would do nothing. But it was a primary abx we used for lyme. Along with the combo of zithromax and flagyl, it helped us a lot. My dd10 reacted very strongly to augmentin (before lyme diagnosis) and I believe it was a herx reaction. The zith did help her maintain and feel better (keeping the strep under control) but her lyme symptoms were not getting better until we added the other abx and worked through the herxing. Sounds like lyme could be a possibility. Good thing to rule out anyway. For prophylactic , I like zithromax the best, but we used highish doses daily to help her (500mg daily when she was 8 and 70 lbs). Susan

Great coverage for extreme cases. I'm always looking for coverage for the cases that are more hidden by all the things the doctors say you have, people like me who were managing but not really fine at all, you know? I was also looking forward to hearing all the discussion they didn't have time for. I hope he'll do another segment. It's great to see it getting out there. I hope to see more of that. Susan

HUGS! I hope this helps you and your dd. Everyone is different and there's just so much you can take before you have to try anything and everything you know? You are doing the right thing, trying to find her some help. Slow but sure wins the race. I like your approach of getting her stable and then trying to treat lyme again. Susan

S&S, just sent you a PM, but, wanted to also say, after reading these posts, it reminded me.... dd10 recently tested for white blood cells in her urine. She had no symptoms for bladder infection but she was very emotional and having emotional episodes several times a day that would last for hours. She was tested a couple of times for bladder infection but it never grew in the culture. She finally went through the abx treatment anyway and things improved greatly. Finding hidden infection of any kind has got to be key in improving the situation. I don't know about c-diff but it sounds like a good theory. HUGS. Susan

Oh wow, I am so sorry. I'm glad you have the tick. You can get it tested by Igenex I think right? A couple of months of abx if you can get it will be good. You are on top of it and realize the importance of the situation. Alternate AND pulse that wine. HUGS! Susan

We spent an amazing day at an outdoor center where we went rock climbing, boating, climbing on a rope course and a zip line. A year ago, heck, 6 months ago, this would have been unheard of. We were on the go for 5 hours, very physical and outdoors. I was freaked about tick exposure but we went anyway. It was amazing that we were able to do this, all three of us. We will probably be sore and tired and wiped out but we all did very well. We saw our wellness doc today. dd9 got the results of her organic acid test and she had similar results as several years ago which was disheartening. But maybe now that the lyme is more under control, we can treat some of these other issues. Doc gave us CoQ10, riboflavin, magnesium, glutathione, P5P B6 and also Niacin, and stuff to support the neurotransmitters. That's all in addition to the other stuff she's already on. Results: Low B6, High Yeast, high hippuric acid, high succinic acid, high citric acid, low HVA, low VMA, low 5-htp Susan

I used them but probably not long enough to know whether or not they really helped. I have read up on them though through Better Health Guy and Dr. Klinghardt and I do trust their experiences. http://betterhealthguy.com/joomla/products/detox-foot-pads Currently we are doing the foot detox baths that I really like and my wellness doctor uses. http://www.bodybalancesystemonline.com/ionic-detox-systems/revive-cleanse-basic.html If I was not currently using the foot detox bath, I'd probably try the pads again. They were a little strange to keep on all night but it was OK. Susan

Yes, those symptoms sound like they could be from lyme. I get awful pains like that in my toes so I would imagine you can get them in your eyes and I can only imagine how bad it is there! My arm was paralyzed, not for moments but for 2 months. I sometimes get a sensation that starts in my hands and moves to my neck that feels like I will become paralyzed and it usually passes in about 2 minutes, especially if I can lie down. I had twitches all over my body that would just travel here and there including the tip of my nose! I had itching to but it went away when I stopped eating wheat.

Do you think that things suddenly looked too big or too small? I've heard of Alice in Wonderland syndrome being associated with lyme. At her worst, my dd had flashing lights and colored dots in her vision along with seeing things that weren't there. Susan

My doc recommends switching the brands around so you aren't always giving the same kind so every bottle he gives us something different. Right now it's Klaires 25 billion per capsule and they takes 4 capsules a day at age 9 and 10.

For us, we had a PANDAS doc, LLMD, neurologist, Dan! doc and an allergist/immunologist. But, our natural doctor (chiropractor/wellness doctor) has helped possibly as much or more than the LLMD. I can't say our time on abx and other lyme meds was not worth it, it was. So maybe it was the progression of things. We needed the medical lyme meds first and then the naturals is working on the rest. Things overall are going very well. I highly recommend seeing someone who does muscle testing and uses alternative methods in addition to the other docs you have. Supporting the whole body has really helped us. I resisted this a lot due to the cost but it has been worth the $$$. The psychiatrist we saw was not all that helpful but I took my dd and not myself, maybe that was our trouble Susan

{{HUGS}}! Did I already tell you about LZR7 allergy treatment that we are doing with our wellness doctor? I'm not ready to 100% start recommending it but after this spring I will be I imagine. I always call us the "allergy family" and we were doing allergy shots too for dd10 and I. She and I would be on multiple meds for allergies (we can't take singular due to the side effects but used zyrtec, benadryl, allegra, flonase, etc.). We did the LZR7 treatment (you can google it and find lots of info on it) and we are off all allergy meds (except sometimes the eye drops for itchy eyes). We are having some horrible days now and then but then it seems to clear up. Normally I would not be able to function with the start of spring and trees blooming without lots of meds. My heart goes out to your son and you too of course! I wish I could help more somehow. Susan

Also, a suggestion, check for lyme symptoms as a possible herx after the IVIG. My dd would have increased pain and could not walk well after her IVIG's. The doctors (not Dr. K) said it was not related but of course it was. Might be a sign into something if you document her reactions to the IVIG. You may be an old pro at IVIG's though and already know how she will react (??) Susan

I totally agree! When I started all this almost 2 years ago, it was so hard to hear it was not an easy fix. I mean, you finally figure out what is probably the underlying cause and you can't just fix it?! But the gains we've made have been so worth it. It's good to go back and remember what it was like back then, to see how far you've come. I hope you feel better soon and feel like you have some hope for your child. You have great support here and if you keep on keeping on, there really is light at the end of that tunnel! Susan

Hello, I have two with congential lyme. They have what I believe was lyme triggered pandas or pans too. My 9 yr old, I would not say is in remission but is doing much better and my 10 year old was doing great and close to remission but is currently in a downward slide. Someone here suggested to me it could be from her teeth loss/growth. Her pain is completely gone and really the only remaining symptoms are sensivity to light, anxiety and some triggered emotional liability. Overall she is much better too. I expect it will continue to get even better as we work with our wellness doctor (detox, deseret lyme series, candida support, gut support, and other supplements specific for each of us) Susan

DD10 had her re-evaluation and he gave her Kavinace to take for her anxiety, mood and episodes. It seems to be helping as long as she takes it before she gets triggered. I've been bribing her with 25 cents every time she takes her pills with a positive attitude and no complaining or resisting. After a few days of internal struggle over this, she seems able to do it. She is trying to save money for something which will take her a year to save for at 50 cents a day! So hopefully she will stay motivated to take her pills for that amount of money! Anyone else taking Kavinace? Susan

My dd9 is taking NAC, one a day (I think the same mg). She weighs 64 lbs.

Great update! I am so glad you have a doctor who is helping so much. Keep up the good work and I will look forward to the next greater update! susan

We have done pretty well there although we just went through 2 weeks of being sick. My girls are exposed every day at their school and they have not gotten strep (knock on wood), just this cold virus. dd10 does react to the viruses still We are taking Laurcidin which should help fight that stuff off and we are working on our immune systems as best we can. Maybe it's necessary to stay on the abx to a certain point before going 100% natural to stay away from the issues you are talking about. I'm not sure yet since we are still in the beginning. I'll be glad when strep season is over though!

I have an update after 3 months of treatment with our natural doc. We are completely off medication and taking only naturals. This is after 1 1/2 years of taking lyme protocol abx and 2 years of pandas abx for dd's. He is working on healing our gut, supporting the liver, treating candida and heavy detoxing in addition to homeopathic lyme treatment, neurotransmitter balancing (for dd10) and hormone balancing and parasites(for me). Oh and also laser allergy treatment that I think has been hugely succssful in lowering the load. We are off all allergy meds except for eye drops and I just started some nasal spray for the cedar trees that are bad right now. dd9 has a slow and hard to notice improvement but she is much improved. She can walk for 3 hours straight in the cold at the zoo without complaining or asking to be picked up. She has gained 8 lbs and I'm sure she's grown. She is more calm but the biggest improvement is around her food. She's had food OCD as her major symptom and she is eating a vairety of food, a lot of food and will try new food and her food can now touch on her plate. dd10 has had a reduction in her anxiety and was able to move out of her sisters room into her own bedroom. She can have sleepovers now and is not deathly afraid of the weather changes. She does still have a lot of anxiety and is currently having irrational episodes 2-3 times a day. She has no moare pain or other physical complaints. She has eczema and odd rashes all over her body and is currently resistant to taking showers or getting wet. I have increased energy and the ability to organize better. I can begin to go through the junk in the house and get rid of it and also I can cook dinners again. Not to the ability of before but it's a start. I still resist making any plans or appointments the require making phone calls or checking voicemail. I am not as overwhelmed in general and don't need as much rest. I still have buzzing in my back and random pain but not too bad. Biggest news is that my gray hair is turning dark brown again It's so cool I hope it continues. If you got this far thanks for reading. Making the move to our new doctor has been a great success. We are changing our protocol now for the next three months and I hope to see good improvement again. Susan

My dd's anxiety (which caused her to not be able to sleep) was helped a lot by taking GABA and balancing her neurotransmitters. Finding the imbalances of what we need naturally I believe helps more than anything. Seeing a natural doc who looks at all this stuff has really made a difference for us. I hope it continues to work for you and you all get some good sleep and rest! Susan

I've heard others here say you can. I've chosen at this point to push through. I've had some pretty hard days but I seem to be able to work through it and only have a few days at a time that are really too much to handle. I've had a few breakthroughs recently and had some days of feeling down right good. That is a welcome relief. Susan

LOL! I like foxy! I took doxy with zithromax and flagyl. Before the doxy I took the same meds with amoxicillin. Right now we are taking Deseret Biological Borrellia series therapy (homeopathy) and lots of detox methods. I see a chiroprator who does Zyto which reads your body and says what supplements are needed based on individual imbalances. He also uses kinesology (muscle testing). I am finding the Deseret to be very powerful (too much at times) but it's doing a lot and I hoep it will get us near where we need to be. Susan