lyme_mom

We had no history of tick bites nor rashes and yet we all had lyme. We never even see ticks and we got it.

It can take up to two months to see antibodies from a tick bite so the fact that you can already see band 41 and 23 is significant. Band 23 is lyme specific and only shows up if you have been exposed to lyme. I wonder if he had lyme before the tick bite but there is no way to know. Bands 31 and 34 are most significant lyme bands but are only tested for by igenex and clongen (maybe stony brook too). I would see an llmd b/c there could also be coinfections. With the rashes it sure looks like an infection -lyme or coinfection. I think more "PANDAS" kids have lyme than people think but they are not getting the right tests or seeing a lyme literate doctor to get the diagnosis. Symptoms are most important in lyme diagnosis. BTW I have been told by two llmds that Quest is the worst western blot. Labcorp's is the best of the worst (but still wrong 50% of the time) and igenex and clongen are the best/most sensitive. The PANDAS doctors should be using igenex by now.

I've heard great things about Ann Carson near Phila. She is integrative and ilads trained.

Rifampin is what we were treated w and it takes 5 or 6onths at least. I'd want to do energetic testing to see if it's bartonella before treating because he has no other symptoms.

I agree that the llmd is better but a chiro can help in other ways that can help the immune system. They do give doxy to kids now according to my llmd. He gave it to my daughter and told me that tetracycline is the one that stains teeth. The alternative to dozy is usually amoxicillin.

Thanks so much for your reply! I wasn't really leaning towards the Cats Claw as I didn't recall this being particularly strong in the capsule form. Your post is a good reminder to me though. Hope you are doing better! bill Bill, strep can cause Trich. Have you checked her for strep? Lyme can cause any kind of symptom. Cats claw is extremely potent for some people. I met a woman who had severe psychological symptoms go away on one drop am/pm. I was amazed. My llmd said for some u don't need much and it kills Lyme and coinfections so hard to know what bugs it's killing. Sounds likely it's a herx. It's anti cancer too so I bet it kills a lot more than we even know.

That is interesting, because I joined a breast cancer list and told my story and someone responded right off that they knew someone else who was diagnosed with BC when they were mostly healed from Lyme. Does make me wonder. She did say that the person did not regress with their lyme symptoms during cancer treatment but after chemo was over, they had a brief worsening. I'm just hoping that before my chemo starts that I have this lyme bug kicked. Had a foggier day than I have had in a couple weeks yesterday, but that is what lyme does in my life, cycles, and just when I think I'm better, I have a bit of a setback. I know I'll kick its ######, but it can't be soon enough. That is interesting and kind of scary. I wonder how many cancer patients have underlying infections like lyme and don't know it. Keep us posted. We r praying for you.

I am so sorry to hear about your diagnosis! My llmd is an integrative doctor who has treated cancer holistically for 35 years. He knows how to heal the body (take the bad stuff out and put the good stuff in is the theme). There are some really great non toxic things you can do like IV vitamin c (which kills cancer), IV alpha lipoic acid, and taking low dose naltrexone (LDN). Many lyme patients take LDN. LDN is cheap and powerful. Its considered a miracle drug for cancer, ms, lyme, etc. I have taken it ever since I did my lyme treatment. I just read Connie Strasheim's Defeating Cancer and it is a wealth of info. I was struck by how many doctors in the book discuss the psychology of healing and how subconscious thoughts can sabotage your health. One doctor discusses Psyche K which is like speed therapy. They muscle test you for any subconscious beliefs that are related to the problem and help you release it. Its quick and powerful. I have been doing a ton of reading because my dear Aunt just got diagnosed with lung cancer after having had breast cancer years ago.She came to see my integrative doctor for advice and continues to use him as an adviser long distance. She wishes she had not done chemo and radiation and had gone the holistic route years ago. She would have learned that she can't detox and that she has high heavy metals and could have started detoxing. She is doing well considering and looks great four months into her treatment. She had a repeat scan of her lungs and the cancer had not progressed which was amazing news. Most of all she is enjoying her family and is not feeling sick b/c of chemo. Suzanne Somer's book Knockout is also very good and so is Beating Cancer with Nutrition (both recommended by my doctor). Genova Diagnostics offers a test called DetoxiGenomic profile and it tells you if you have any genetic blocks to detoxing. One holistic cancer doctor told my Aunt that it is a very important test to get whether you have cancer or want to prevent getting cancer. Seems to be a theme in lyme and cancer-the inability to detox can make you sick. Infrared sauna treatments, colonics etc. are also highly recommended by most of these doctors. Biofeedback machines like ondamed or Assyra (sp?) can be helpful in identifying what the body needs and balancing it. Also I have read repeatedly that it is important to have cancer surgery during the time of your cycle when progesterine (sp?) is high b/c progesterine is protective and aids in aptosis or natural cell death of cancer cells. Cancer cells are less likely to spread at that time of the month. I think its towards the second half of your cycle that your progesterine is high. Suzanne Somers' book mentions this I think. These holistic doctors in Defeating Cancer say that it is much easier to treat cancer holistically if the patient has never had chemo or radiation b/c those things undermine the body's ability to heal itself. They routinely see people with stage 3 or 4 cancer go into full remission so keep that in mind and think positively! Good luck!

Is Dr B a lyne literate doctor or the Pandas dr? I've never heard of taking both doxy and augmentin xr at the same time for Lyme. They both treat Lyme.

Where do u get the test?

I think bactrim also kills babesia too.

I can't get the link to work.

Just know that we are rooting for you and your son. My son is the same age and starting high school is hard enough without having to deal with lyme... My son was very sick when he was 10 to 12 but is doing well now. A lot of people don't get what you are going through or get tired of hearing that he is still sick with lyme but those of us who have been through it completely understand. Augmentin really helped my son but there were many moments when I wondered if we were really making any progress. You will get there!

I did them twice a week when I was at my sickest and they really made me feel better-big boost in energy. I felt like new life had been breathed into me within a few hours. It wears off after a couple days though so you need to do multiple treatments for better results. Now that I am well I get them periodically but do not notice a huge difference but they are good for you especially if you are doing heavy metal detox like i have been doing.

hmmm --- the extended million dollar question -- on the initial surface, i'd guess the rages are totally related to infection -- or at least, the process started by the infection. so - i'd say your relative should fully explore strep/TBI/myco and all the various infections. but with the thought that the infection is triggering some faulty thinking that can also respond, at least in part, to coping strategies such as ERP and learning new skills or strategies. with the disclaimer that sometimes, the brain is just not able to respond b/c it's so overwhelmed. i do think there are situations that the brain needs to calm first to be able to deal with the strategies. as the infectious process goes on -- to what extent is the body affected in an autoimmune manner and what does that bring on? to me, that's the bigger one without the 'easy' answers. unfortunately, i fully realize the ridiculousness of stating healing these infections in and of themselves as the 'easy' answers! for my ds, we're still in the process of peeling away the layers of infections. he's not 100% as far as infection, but was very much improved. we have seen a wild herx to an antiviral that included extreme behaviors that i attribute totally to infection. he's also only 7, we've been at this 3 years -- what inept processing and coping does he have from that that may be learned brain function but aren't infection driven? with recent extreme stress, he went into a pandas-like exacerbation. we saw great results with motrin therapy. what does that show? clearly not so much infection. i think it's got to do with inflammation in the brain or of the BBB. but -- what is driving that -- stress or further infection? just last night, i saw his interior nose inflammed and he's coughing and throat clearing this morning. i'll take him tomorrow to see if it's a sinus infection. could that have been what i was seeing that is just coincidental to extreme stress and it really is infection based? so, just this morning, he was out of control with upset that his brother had an extra cinnamon roll more than him. only one solution that we get more. angry and inconsolable except for that solution. unable to really work problem solving model that has been a gem in last few months. 20 min after 1 does of motrin -- calm, interested in activities and doesn't care about the roll. when i asked if he had anything to eat this morning, "yeah, i had a cinnamon roll" with a smile. how familiar is your relative with the infectious-neuropsych world? maybe you could suggest a mortin trial during time of rage or upset, just to see what happens. many pandas parents have success with it. that's not to say that if it has no effect, it's not strep or infection related.unfortunately, it's a stop-gap and not a long term solution, but can be helpful at times. thanks smartyjones. I forgot about advil. That's good to know. You have been at this a long time. I didn't realize it had been three years already-but not three years treating TBD's, right?

Rage and inability to cope with frustration was DS8's main symptom all along. He did have pains, but they were vague kid-type complaints - growing pains, tummy aches, that we didn't connect to the behaviour at first. The pains eventually became very severe, but not until at least a year after the raging started when he was 3. We saw at least a dozen docs who could find nothing wrong, and we were referred repeatedly to psychiatrists. DS ended up with an alphabet soup of psych diagnoses - the final one being mood disorder (bipolar). We tried psych meds, and loads of therapy for YEARS. Nothing helped. Until we found out about PANDAS last year. Initial low-dose antibiotics made an amazing difference, but only for a week or two. High dose antibiotics made him rage non-stop. THen we found out about lyme/bart/babs and started treatment in August. Now DS8 is not even the same kid. Even this past week my neighbour commented over the fence that he is so different - so relaxed and more social. He still struggles with anger and frustration occassionally, but he doesn't lose his head anymore. He is able to engage in therapy now. His pupils don't dilate into the "crazy cat eyes" that he had when he raged before. I'm sure there could be many different reasons for the rage in your relative's child, but infectious-triggers would be high on my list of things to look into because of our personal experience. If I could go back in time I wish someone would have told me at the beginning to test for ASO, do Cunningham's, and test for lyme via IGeneX. We got very abnormal results on all these test, but none of the dozens of docs we saw ever thought to order these tests. I had to research and ask for them myself. I hope they will find some answers and healing. There is nothing quite as terrifying as watching a child's uncontrollable rage. Momcap, thank you so much for your great summary. I can relate to getting the wrong information from doctors! It is truly amazing how clueless most doctors are about these latent infections and what the symptoms look like. Getting the right combo of antibiotics sure seems to be critical for so many kids. Thanks again for your note.

That's wonderful that your son is doing so much better mama2alex. Lyme sure can be subtle and sneaky and not obvious. What is so difficult about a symptom like rage is that it is not something people usually think of as a sign of an infection unless you are really aware of PANDAS, TBDs, etc. Thanks for posting!

We did the Shoemaker tests http://www.survivingmold.com/diagnosis/lab-tests which tells you about your body's genetic ability to handle toxins (the HLA DR gene) from mold and lyme and whether either could be contributing to your issues. We used Labcorp for these. We did a little mold hunting but didn't feel it was the "biggie" issue for us. So we tested for KPu/pyroluria using Vitamin Diagnostics. This turned out to be a huge issue for DS (an issue for DD too but less so). We saw big improvement in the first week of treatment. Next I stumbled onto researching methylation and focused on what vitamins/minerals/amino acids have various cause/effects in the body. You can do genetic testing for various mutations that effect various points in the cycle. These genetic tests can be done by any lab (research Amy Yasko for a list of various genes that are involved in mehtylation - she has a lot to say about aluminum too). Given limited funds, I've focused on the points in the cycle that seem to be an issue for us and I've started adding supplements that impact that point. It's a little trial and error, but trying a bottle of niacinamide is cheaper than testing lots of genes. We just don't have the funds for chasing every trail the way we used to. The approach you've taken might be just as enlightening. I'm just not familiar with it. The only caution is that the real issue with some of these deficiencies is that it's a deficiency within the cell that matters. Blood tests generally measure what's in the plasma, not what's in the cell. So in the case of KPU/pyroluria, my son has a normal zinc level in his plasma. But he pees it away without the cells being able to use it. So we never would have found the deficiency with a traditional vitamin/mineral test. It had to be a specific test for KPU, which looks for a byproduct of heme syntheis called mauve factor. I know infections can cause you to have similar "hidden" inter-cellular deficiencies. So my personal hesitation would be that you could miss some things. But...it seems every thing we've ever investigated have imperfect tests, so you have to start somewhere...I hope it gives you some really good results! Thanks for all the info LLM. I would like to do the kpu test b/c so many lyme patients have this issue. I think my kids had the hla testing with dr jones and it was negative. I think he does it on everyone. I don't know enough about all of this to know but it seems to me that the hair test we did suggest something similar. If you are not balanced with your minerals you will not dump toxins. My oldest has either too much or not enough copper (can't remember) and my other two have a sodium/potassium imbalance. They dont have any symptoms from it yet but I'd like to work on it if it helps dump toxins and strengthen the immune system so we never deal with lyme again. We tested our house for mold too (w a mold sniffing dog) just to be sure it wasn't a factor in our long lyme treatment. There was no mold issue but I wanted to check that off our list knowing how much of a factor it can be with lyme. This hair test says that fixing the imbalances are not what you would think..that to fix an imbalance of two minerals you add to the mineral that they have more of. It is not what you would think. The results of the hair test tell you what kind of oxidation rate you are (slow, fast or mixed), what stage of stress you are in adrenal wise (alarm, resistance or exhaustion), your glandular health, dietary patterns (sugar and carb tolerance, protein synthesis, digestion, etc., the autonomic state, the immune system, liver and kidney stress, inflammation, cell permeability, metabolic trends and eloctrolyte patterns. All of us need work according to the test so we are going to give it a try and see if we notice anything or if the hair tests show that they dump more metals after a few months. Seems like there has to be some overlap with KPU in this b/c KPU means you can't detoxify, right? That seems to be one of the goals of supplementation through this lab-to get balanced so you detoxify. Also the report says something similar to what you said-a high level of sodium in the hair does not necessarily mean you have too much sodium in your diet. Here is a link to the arl website and an article entitled "Insights into Children's Health." http://www.arltma.com/ChildrensDoc.htm. If we never had been sick with lyme I would never have gotten interested in all of this. Thanks again for the info!

Hi Smartyjones :-)! Thanks for your great info! We are all doing well and are still off lyme treatment now a year and four months. I will do an update in another thread. So how much of the rage is related to the infections do you think?

Thank you for your post. How did you test for the vitamin and mineral deficiencies and the mold toxins? We recently tested our family using Analytical Research Labs hair test to identify vitamin and mineral ratio imbalances. The report you get from their hair test is pretty interesting. Our chiropractor uses this lab. You order the supplements they recommend (which are based on your results, weight and age) and within a couple months you can get balanced. Apparently once you are balanced you start dumping the toxins. We are giving it a try. My kids have aluminum toxicity that I want to get rid of. My llmd uses Doctors Data but the ARL test gives you more insight into the results and also offers supplements customized to your results.

THanks adkmom and rowingmom for your responses. I will pass this on. That is good to hear that the symptoms have improved with treatment.

I have a 9 year old relative who is having a lot of trouble with rage/inability to cope with frustration/anger. He does not have pains or other symptoms that his Mom is aware of but has had strep in the past numerous times. Where should they start looking for the cause of this issue and have any of you dealt with rage in a child and seen it go away with lyme/bartonella/babesia/strep treatment?

My llmd would put you on flagyl that kills all kinds of gut bugs but the humaworm may work too. The tests for parasites are not that reliable and so he uses flagyl routinely for people with gut issues. Much has been written about the relationship between parasites and lyme (see Klinghardt).