matis_mom

Hi Jodie, I know how you feel, it's all so overwhelming! Financially, logistically, emotionally overwhelming. Yes, I guess if money were no object and you had nothing to do but pop pills, maybe the "hit it with all you've got" approach would work. Disclaimer: I am just speaking from my own experience, and from where I'm at in this journey. The more I read (books, other people's experience, etc), the more I realize this is going to be a looooonnnnnng journey. It takes time. So I don't see the sense in rushing and getting overwhelmed. If all the recommendations you've been given seem a bit too much, they just do what you can and wait for your appointment with the LLMD. We already started treatment through an LLMD, and I'm doing some other alternative things, incorporating them slowly. I will ask the dr. at our next appointment what he thinks, what he recommends. I think it's key to find a doctor you can talk to and who will understand where you are at. He completely understood our family situation and did not ask me to do the Igenex test, better use that money for treatment. He also wasn't happy that we had done steroids, but again, nothing we can do about that now, we are just moving forward here. If something feels odd, if you get a funny feeling (a lot of practitioners out there are into New Age and some weird stuff which, to me, makes them loose credibility), you should pay attention to that. That's just may opinion. You are saying you find the fact that Dr. Klinghart is so hard to contact "disturbing", I would take that as a clue. Maybe you can find a local practitioner who is familiar with the protocol whom you can trust. If you are going to be second guessing them, well, you'll just be stressing out over every little decision. That is my prayer these days for our family: that we will find someone we can trust to treat us all as a family. We found a good LLMD, but he is a bit far, and I could not possibly afford to take everyone to him. Maybe spend some time reading and trying to figure out what approach would work for you family, what is DOABLE at this point. And more than anything, try not to stress about it. Try to enjoy your family, have fun, relax. One thing you could totally try while you look for answers is to work on detox. Epsom salt baths and the like. That will surely bring some relief. I hope I'm not adding to the confusion here. Someone I met through a Lyme support group said this, and I loved it: "EVERYTHING IS FINE, YOUR PERSPECTIVE HAS JUST CHANGED" God bless, Isabel

Ok, so we are all in about day 20 of our abxs... DD10 is having intrusive thoughts, fears, and headaches, with pain around, or rather behind, the eye. DD8 complaints about a different joint each day, and also pain in the shins, and sometimes thighs. How do you know if a) the antibiotic is working and it's herxing or the antibiotics is NOT working and the disease is taking it's toll PANDAS DS12 is showing increased anxiety and urinary frequency... Anyone?

OK, so here is the quote from that article... Thank goodness! We are already gluten free/diary free. If I had to take out eggs and other stuff, I don't know what we would eat! Dr. Klinghardt on Vitamin D and Lyme Disease ALS, MS, cancers, etc. are all vitamin D deficient states. Lyme spirochetes utilize vitamin D3 to stimulate their own growth. It helps the spirochetes to multiply much faster. Sarcoidosis is a condition of lumps in the lymphatic tissue and lungs. It is often caused by Lyme disease. Dr. Marshall is not an MD or a chemist. Dr. Klinghardt has not seen one improvement on the Marshall Protocol except in a sarcoid patient. It has not been helpful for pure Lyme cases. If a person is vitamin D deficient and being treated for Lyme, it seems to take longer for them to recover. When you give vitamin D and Lyme treatment together, the patient does far better. Lyme disease multiplies every 22-36 days. With Vitamin D, that process may be every 19 days. The organisms are most vulnerable to treatment when they are multiplying. The question then would be, how do you know if you have sarcoidosis??? What are the symptoms? Are swollen lymph nodes something to worry about? My tonsils will just not go down no matter what. I literally feel like I always have a lump in my throat.

Hi Emerson, I got this info from a book by Bryan Rosner called "Top Ten Lyme Disease Treatments" A friend had recommended it and I found it at my public library, if you get a chance, I think you will find it very useful. Anyway... 1) Cell Wall Inhibitors: Cephalosporins (Omnicef, Ceftin, etc --anything with a "cef" in it) Penicillins (Amox, Augmentin, etc) 2) Protein Synthesis Inhibitors: Macrolides (Zithromax, Biaxin, etc) Tetracyclines (Tetracycline, Doxy, etc) Lincosamides (Clindamycin) Ketolides (telithromycin -- caution: serious side effects) 3) Anti-protozoals and anti-malarials: 5-nitroimidazoles (Fasigyn, Flagyl, Tiberal, Plaquenil) These are the "cyst busters" The author says No. 1 is the WORST choice, because the borrelia spirochetes can just change into cell-wall deficient form, and then the antibiotic does nothing for you. Hope this helps and you are wise to get informed before going for your appointment. Keep us posted! Isabel

Has anyone heard/tried Lithium orotate? Before you call me crazy let me clarify this is not prescriptium lithium but an over-the-counter supplement which is supposed to "play an important role in protecting the brain and minimizing neurological sumptoms during the course of Lyme Disease treatment. For some Lyme sufferers, lithium supplementation can replace pharmaceutical treatments for Lyme-related depression, mental confusion, and behavioral instability."

I was just going to ask about it too. I've read many good reports about it, and I was trying to find a doc in my area (Northern VA). Where do you live? Supposedly, too much vitamin D, or rather one of it's byproducts, messes up your immune system and makes it unable to fight cell-wall deficient bacteria. Lyme can switch from the spirochete form to the cell-wall deficient form, and when it does so it's very hard to get at it with antibiotics. So, the thinking goes that when you follow the Marshall Protocol (which sounds pretty intense), your body is better able to fight Lyme, and any other cell-wall deficient bacteria. It is very interesting, and hard to do as it sounds, it seems to work wonders for those with "autoimmune" diseases, which, if I understand correctly, according to Dr. Marshall are not true "autoimmune" problems, but rather an undetected infection by cell-wall deficient bacteria. That's what I've gathered in my late-night internet searches, and reading "Top Ten Lyme Treatments", so it's probably not all that scientific and acurate, so do your homework before you embark! It is supposed to take some time to see the benefits of it (we are talking over a year), but the guy who wrote "Top Ten Lyme Disease Treatments" swears by it, and he said he did it, but not 100% of the time. He took breaks in between, which is not "kosher", but it was the only way he would have been able to do it. One of he big perks of it is that you can take a much smaller dose of antibiotics and get a whole lot more punch out of it. It's something I'm definitely going to ask our LLMD at the next appointment. Winter is coming so I guess we could try it December thru March or something like that. I forgot to say, if you do a google search you will find some sites that call it a scam. So, do your homework and proceed with caution. Apparently thousands of people have been helped by it and there is a forum where they share their stories. I can't imagine anyone taking the trouble to set up a fake forum with thousands of entries to support a scam... but you never know!

Isn't it amazing how it's all a matter of perspective? Little things most families take for granted are such a joy to us! And yes, about those sore throats, getting all anxious when anyone seems to be coming down with something, going to the doctor almost weekly to check out this or that, and the eye rolling, oh yes! But, as God would have it, that is the way I found out I have Lyme, I've had it two years at least... it probably would have been many more months/years, and I would have wound up in a lot worse shape if I hadn't kept on going back to the doctor on account of my swollen tonsils and red throat!

I was just going to ask about it too. I've read many good reports about it, and I was trying to find a doc in my area (Northern VA). Where do you live? Supposedly, too much vitamin D, or rather one of it's byproducts, messes up your immune system and makes it unable to fight cell-wall deficient bacteria. Lyme can switch from the spirochete form to the cell-wall deficient form, and when it does so it's very hard to get at it with antibiotics. So, the thinking goes that when you follow the Marshall Protocol (which sounds pretty intense), your body is better able to fight Lyme, and any other cell-wall deficient bacteria. It is very interesting, and hard to do as it sounds, it seems to work wonders for those with "autoimmune" diseases, which, if I understand correctly, according to Dr. Marshall are not true "autoimmune" problems, but rather an undetected infection by cell-wall deficient bacteria. That's what I've gathered in my late-night internet searches, and reading "Top Ten Lyme Treatments", so it's probably not all that scientific and acurate, so do your homework before you embark! It is supposed to take some time to see the benefits of it (we are talking over a year), but the guy who wrote "Top Ten Lyme Disease Treatments" swears by it, and he said he did it, but not 100% of the time. He took breaks in between, which is not "kosher", but it was the only way he would have been able to do it. One of he big perks of it is that you can take a much smaller dose of antibiotics and get a whole lot more punch out of it. It's something I'm definitely going to ask our LLMD at the next appointment. Winter is coming so I guess we could try it December thru March or something like that.

Hi Vickie, I totally see what you are saying and have the same feelings sometimes. Right now ds is showing sporadic OCD/anxiety, and I know it could explode any time, but I try to remain thankful for the progress he has made, which has been inmense! Gratitude, gratitude, gratitude. I think this disease takes each family into a journey where we learn to trust God and be thankful for every little "normal" moment

It might have to do with GMOs? About the diet, I would suggest you try not just gluten free, but GRAIN, SUGAR, and STARCH free. We did this with ds, and he did show improvement on it. Now we got IGG results back and he is indeed sensitive to gluten, wheat, milk (and all dairy), and fish. So we are easying up a bit (like adding brown rice, oh what a treat!), but still trying to keep starches (potatoes, sweet potatoes) and grains (even if they ar gluten free) to a minimum. If you stick to fresh fruits, veggies, nuts, eggs, it might help reduce the financial impact. Yes, our grocery bill has gone up, but compared to the medical bills, well, it's peanuts!

Hi, It seems no one knows how long it takes for titers to go down, so you could just re-check every now and then and see if there is a downward trend. But, I would strongly encourage you to check out Lyme if you haven't already done so. And maybe talk to your doctor about changing/upping antibiotics.

Wendy, I forgot to ask... so which treatment is it that is showing consistent results??? The more I read the more I want to steer away from heavy duty antibiotics non-stop...

I just checked out two books out of the library. 1) Healing Lyme: fascinating explanation of how Borrelia can adapt and survive, and why treatment is so hard. 2) Top ten Lyme Disease Treatments: haven't finished this one, but so far seems very interesting and balanced in presenting the pros and cons of each approach. I'll put "Insights into Lyme" next in my list. They had "Cure Unknown" at the library too but it looked pretty thick and depressing. Maybe later...

Oh, man! I so remember having the tingling in my arms while pregnant with my youngest But I can't even think of her having it right now. How would they treat a baby anyway? The pediatrician did give her 1 month of amox, in light of our family situation. I just have to hope and pray she is fine. But back to steroids. DS saw AWESOME improvement from the first taper (4 weeks). He kept relapsing (every month on a full moon, wouldn't you know it!), and we tried a couple more times, but without very impressive results. Our new LLMD was not thrilled to hear that, but what can we do about it now. We just have to look ahead and keep fighting.

Drawn: Oct 09 Age: 12 Sex: Male Status: somewhat anxious but not at his worst CamK: 168 Treatment: At that time, he had only had a few months of abx, no steroids or anything, and was testing ALL BANDS negative for Lyme and co-infections through specialized labs (we were working with an LLMD at the time who insisted he had it, but I did not know any better ) Now he is showing 4 bands positive through Labcorp, and we are pretty sure I have it, and I think some of the other kids too (particularly the ones that kept getting strep and/or impetigo!) We sent in DD10's Cunningham last week and I'll post the results. We are also waiting on a Western Blot for her. I am so glad to see more action on this forum! Keep it coming Isabel

I am sure some of you remember the thread a while back talking about how our PANDAS kids seemed to get worse on a monthly basis, around the time the moon is full. I totally remember last year one or more of my kids coming down with strep or impetigo every single month from Oct to Jan last year. Of course PANDAS ds would get worse too at that time. Now listen to this... "These attacks, like a number of the symptoms of (blank no. 1) infection, occur at periodic intervals, seemingly as the (blank no. 2) load and antigenic variation, and, more importantly, immune competence, wax and wane. (Often the attacks wax and wane on about a four-week interval and are often, no one knows why, worse during the full moon.) So now, how would you fill in the blanks... No. 1: Lyme No. 2: spirochete From "Healing Lyme", by Stephen Harrod Buhner, page 37, under the heading "Lyme Arthritis"

Thanks! I emailed a group close by too.

I hear you! It is so hard to make time to take care of yourself when you have kids to worry about. I thought ds's PANDAS was about as much as I can handle, and now we are looking at our second suspect, I'm pretty sure I have Lyme, I'm not sure if dh has it or not (he did get treated 2 yrs ago), and worrying about the baby having congenital, and everyone else in between. It's just too much... But, what can we do? I guess just hang in there and try to get treated, without panicing? I'm just having trouble dealing with their emotional meltdowns, when I myself are hanging by a thin thread.

If you have before/after handwriting samples (if this has been affected) Also, bring along a timeline of how things have progressed. I know you probably have it all in your head, but you know how it is when you are at a doc's appoinment and can't remember your facts straight. So if you can write down dates/behaviors/meds. And also write down a list of questions you might want to ask. I always forget something! As someone mentioned, try to bring another set of ears along. Sometimes it's helpful too if you have someone else there to take the child out to the waiting room after she has examined him, so you can talk with Dr. L at easy without your son being in the room. Good luck! Isabel

Not a lot of wisdom to offer, but just hang in there! You are already doing so much for your son, it looks like you have a good doctor too, I hope he seems some relief from IVIG. I don't know if you've caught this yet, but I think IGENEX tests results may be affected by IVIG? You might want to check before you go through the expense, but definitely worth looking into Lyme (I just read something about Lyme-induced Autism, had never heard of it before!). All the best! Isabel

I need help from Lyme moms out there! How do you keep it together when you are battling Lyme yourself? Today has been a challenging day. PANDAS ds's anxiety is up, and dd10 keep coming to me with her "problems", which are just really little things she is blowing out of proportion. She is truly worried about these things (she has not dx so far, but I think she also has Lyme and/or PANDAS), and she keeps coming to me, and no matter what I say, there is nothing I can do to help her. It really breaks my heart, because on top of everything, I am loosing my patience, basically shutting her off, since I don't know what to do any more. Do those of you who have Lyme ever experience something similar? How do you keep a family going when you feel you can barely keep yourself going? Not every day is like this, it seems the "bad", hopeless days kind of come and go, and I can sort of accept this to a certain point, but I am scared because it feels like we are slowly going down a downward spiral here. I know in a couple of days this "fog" will have lifted and I'll go back to my usual "we can beat this thing!" kind of mood, but I just need some support tonigh!

Did you try Epsom Salts in the bath? It really helps! Many times trouble sleeping has to do with magnesium deficiency, so replenishing magnesium via a hot Epsom Salt baths is very relaxing. When I am restless and can't sleep, I take a couple of calcium/magnesium pills and it makes me settle down very quickly. So you could try that as a supplement as well. It works best if you break it up during the day, rather than taking all of it at once, as you can't really assimilate a large those.

Yes, I guess not every white spot is strep! Funny how we are all so self-conscious about our tonsils these days! Last time I saw a white spot, it WAS strep, so you always have to check it out. I better go order some more rapids! We are still all on abx for another 2 weeks, I wonder what will happen when we are done.

That is great news! Good to know that in the midst of everything they are keeping up the learning

Vickie, You'll be in my prayers. Be encouraged, though. I been having kind of the same situation, and thankfully ds remained stable even though I did have strep, and I'm still trying to get my tonsils to go down. I do have Lyme too, so I think that's what's making it harder (on the third antibiotic now!). I am also thinking of trying OLE. Isabel