cobbiemommy

You stole my list! Also, When you give Saving Sammy to your local pediatrician and Curing the 4A Disorders to another mom with an Aspie (because hey, after all, you practically have it memorized!". When you tell people your son has Lyme Disease and it's a good thing because now you KNOW why they have been so hard to live with. Cobbie

DS has just started on Doxycycline for RMSF (four days). His nose is draining like crazy. He keeps making this little sound like he is clearing his throat or grunting. Is this a herx that anyone else has seen or experienced? When he was on Augmentin and Zithromax we went through the same thing if I remember correctly. I am giving him children's Benedryl on the recommendation of LLMD. Also, lots of water.... Last night he was awake three times, this is also not typical. Cobbie

RNMom, sounds like your son is making progress. How often is your son getting the Bicillin shots. My DS, 11, is getting 2.4 million units once a weeks, but I have read that the optimal dose is 1.2 million twice a week. Bicillin is definitely the treatment of choice for Borrellia. Has your son been tested for allergies. My son has bright red cheeks which can be tied to two things, wheat allergy and HHV1?? the version for roseola that he is active for. Sounds like he is wanting to get the shots which can only be a good thing, because they are painful. Keep us posted and hopefully we can all navigate this journey together! Cobbie

how did you find that your boy is not releasing bile? did you have any blood tests recently? does it show any problems with liver or you are just worrying? could I ask what meds he is on presently? could you list? Thanks for all your good advice. This calms me down somewhat and brings me back from the edge... We recently ran 37 vials of blood, stool tests and urinalysis. He had the CDSA 2.0 from Genova Diagnostics. Here is the list of medications: Bicillin LA (once a week), Zithromax 500 mg, Doxycycline 200 mg 2xday, Zenpep (RX digestive enzyme), and Heparin (blood clotting disorder), and Gabapentin. Here is the list of supplements: Mastica (for H. Pylori), Monolaurin (anti viral), Transfer Factor Plasmyc (HHV 6/Epstein Barr), Oxbile (replaces natural bile), Iodoral (Iodine supplement), Zyrtec, Zinc, Caltrate, MG Plus, Choline (liver detox), B50 and Vit C. Most of these must be timed specifically around mealtimes, each other, and bedtime. I feel like a pharmacist. Thanks, Teresa

I think my brain is shutting down! I thought I was doing so well to make a chart of all the new meds and supplements, get my gluten free cookbooks back out, and notify the school of some of the changes. Ryan's liver is not releasing any bile to digest his foods. He is not getting any of the benefit of the fats. We are supplementing his diet with OxBile to make up for his natural bile. Also, his liver enzymes are elevated. My mother died from Hepatitis C seven years ago, so I know what end stage liver failure looks like. It is a horrible death. My mother and I were very close, I was the last of seven children, the baby. I freaked out yesterday because I thought of losing my son in the same way. I know we are a long way from death and I am probably over dramatizing, but I am just beside myself. Ryan was tested for Hep C and tested negative. Thank the Lord. But he tested positive for so many other things that are hard on the liver like Epstein Barr virus, HHV1 and HHV4. I guess I just needed to vent and ask for reassurance. Did anyone else have liver problems with their Lyme? Did it go away? Thanks, Cobbie

She prescribed Monolaurin and Transfer Factor PlasMyc to help with the viruses. The Heparin sublinguals are going to be $255.00 a month and not covered by insurance. Our other option is to give him two shots a day, every day, of the Heparin. Those shots would be covered by insurance, but only at 50%. Around $85.00 after ins. I went ahead and ordered the sublinguals from the compounding pharmacy for this month. One worry at a time, right??? The Mastica is supposed to help with the H-Pylori. It should be short term of two months. Also, she added OlaLoa, which is supposed to be a vitamin supplement. Don't have it yet. Scheduling around the meals and doxycycline looks to be the hardest so far. Oh yeah, and that little thing called gluten free... Ugh.... Good thing was, he seemed to feel really good this morning! Makes this all worthwhile. Hugs to all, Cobbie

Saturday, we went to our LLMD appt. We saw the doctor at seven at night on a Saturday night, because otherwise we would have had to wait until after Christmas. To me, that is amazing right there. Thirty seven vials of blood, one stool sample and one urine sample were analyzed. The results were: (drumroll please) Baronella: positive Ehrichia: Negative Rocky Mountain Spotted Fever: Positive Babesia: Positive Viruses: Ebstein Barr Virus-Active HHV6-Active HHV1-Active Parvovirus- Active Mycoplasma Pneumonia: Positive Chlamydia Pneumonia: positive H pylori (in gut): Positive In addition, he is reacting terribly to wheat and unable to digest it. Also, his liver is not making any bile to digest fat. We will be taking wheat out of his diet, and adding in digestive enzymes and Oxbile to supplement. Hypercoagulation is a factor in his blood. This affects the blood (oxygen, nutrients, and antibiotics) being transported to the cells. His body is being deprived of the oxygen it needs. He will begin taking Heparin to help bring down the clotting factor. C4a and C3a are two tests that were performed at LabCorp. These two tests are for inflammation. Both were high. The C4a test has a value range of 358-1883. DS's level was over 6,000. Basically off the chart! After making some supplement changes and going gf towards the end of the week, we will be starting Doxycylcline next weekend and keep taking the Bicillin LA and Zithromax. Also, we will be adding in monolaurin, mastica, and an iodine supplement. Just writing this helps me to make some sense of all my notes and the lab results. Today, I plan to spend a lot of time charting out the medications and supplements. Quite honestly, I am pretty overwhelmed and blown away by just how sick my little man is. Please offer up a prayer for him. He is so good hearted and loving. He said he would like to grow up to be a priest, but he can't because he wants to be a daddy, too! Right now, I just want to give him the chance to grow up. Cobbie

DS was very cranky, sore and tired on Flagyl, which I believe works very much the same way. Thanks for the laughs, I needed those! Cobbie

My DS, 11, gets 2.4 million units (adult dose) of Bicillin LA once a week. It is working wonders to clear up his strep in his sinuses. We use a Lidocain patch for an hour before the shot to help minimize the discomfort. We then leave the Lidocaine patch on until bedtime or even the next morning. The patch does not work perfectly, but it helps. While he is good and numb, we try to massage the rump to get the medicine worked in. Also, we use a hot water bottle the next day to try to avoid discomfort. We also sit on a pillow for a day, and we get the shot on Friday, so that he does not have to go to school with a sore bottom and fatigue. It does seem to be helping with his symptoms, his teachers have noticed a big improvement. I know the half life of Bicillin LA is supposed to be 14 days, but after day 5 we start to see diminished improvement. DS is diagnosed with Lyme, Bartonella, and Pandas. Cobbie

My father in law who had Type 1 diabetes also developed Bell's Palsy and a personality change within a year and then died within the next year. He was a farmer who spent his whole life outdoors working with cows, horses, and crops. His personality change was blamed on dementia, the Bell's Palsy was of indeterminate origin and his heart attack was blamed on the diabetes. Now, looking back, I wonder if it could have been Lyme. I'll never know, but it does make you wonder about the congenital part....

Sent my thank you with a VERY brief history of DS's issues. Hope he keeps talking about this; more voices the better. Cobbie

Thanks for posting all of this. Pretty sure we are going to start some new antibiotics on Sat. Thanks for all the tips! Cobbie

Dear Tresse, DS, 11, also has vasculitis, as well as lyme and pandas. We are waiting on blood work which will be done on Sat. For some patients, they use blood thinners, such as Heparin. The blood vessel is inflamed and the blood is thickened because of the Lyme bacteria. Not saying your child has this, but this is the case for SOME Lyme patients. I attached an article-note the use of plasmapheresis and IVIG at the end. Interesting. This is long.... Henoch-Schönlein purpura (HSP) is a systemic vasculitis that causes the blood vessels in the skin to become inflamed, causing red spots. When the blood vessels in the skin get inflamed, they can bleed, causing a rash that is called purpura. This rash is typically seen on the lower legs or arms. The specific skin lesion is characterized by the tissue deposition of an immune system product, called IgA immunoglobulin, which is also found in kidneys of patients with a renal disease, called IgA nephropathy. HSP occurs more often in children than in adults, and many cases follow an upper respiratory tract infection (infection in your sinuses and /or lungs). Half of affected children are under age five, although kidney involvement is more likely to be severe in older children. Compared to children, adults had more severe and frequent kidney involvement. Symptoms occur over a period of days to several weeks: skin rash, joint aches and pains, usually in knees and ankles, occasional swelling, abdominal pain and renal disease manifesting mostly as hematuria (blood in your urine), proteinuria (abnormal excretion of proteins in urine), edema (swelling) or alteration in the volume of urine. The hematuria may be noticed as red or tea-colored or cola-colored urine or the amount may be so small that it can only be seen under a microscope. The brain or the lung may also be involved in HSP. Gastrointestinal symptoms are present in the majority of patients including abdominal pain that is frequently associated with vomiting. The pain typically develops within eight days of the appearance of the rash. Bleeding of the gastrointestinal duct presenting with black or bright red color in stools is seen in these patients. Although rare, more serious complications may develop like intussusception, a situation in which one portion of the bowel slides into the next creating an obstruction in the bowel, leading to swelling, inflammation, and decreased blood flow to the intestines involved or inflammation of other organs leading to pancreatitis, cholecystitis, and entero nephrotic pathy. Renal (kidney) involvement is common, occurring in 30-70 % of patients. Kidney disease is usually noted after the onset of systemic symptoms. More marked findings may also occur including nephrotic syndrome, a situation characterized by abnormal excretion of proteins and lipids in urine, swelling (edema), low level of albumin in blood and hyperlipidemia. High blood pressure (hypertension) and acute kidney failure may also be seen. Worsening of the kidney symptoms and biopsy-confirmed worsening of the kidney lesions may be observed in patients with repeated attacks of rash or hematuria (blood in the urine). Even though the symptoms of HSP make it easier to diagnose in children, confirmation of the diagnosis of HSP requires evidence of tissue deposition in the skin or kidney of IgA immunoglobulin. Renal biopsy is another method to establish the diagnosis, but is reserved for patients in whom the diagnosis is uncertain or in whom there is evidence of more severe renal involvement. The overall outcome is good in most patients. All of the manifestations of active HSP usually resolve spontaneously, although recurrent episodes of skin rash and hematuria may be seen. Among those with kidney involvement, only a minority have persistent disease. The kidney prognosis is excellent in most patients. However some patients will have persistent protein in their urine, high blood pressure, and renal insufficiency. It is estimated that HSP accounts for approximately 3% of cases of end-stage kidney disease in children. Poor renal prognosis is more common among those with the nephrotic syndrome, renal insufficiency, and more advanced findings on biopsy. Recurrences are common, occurring in approximately one-third of patients. Since complete recovery occurs in 94% of children and 89 % of adults, respectively, most patients receive no specific therapy. There is suggestive evidence that corticosteroids enhance the rate of resolution of the arthritis and abdominal pain, although they do not appear to prevent recurrent disease. However, specific treatment is recommended in patients with marked proteinuria (protein in the urine) and/or impaired kidney function during the acute episode. A kidney biopsy can be performed to reveal the severity of the lesions which appears to be the best indicator of prognosis. Advanced disease, usually defined as crescentic nephritis, is treated with a regimen consisting of pulse intravenous methylprednisolone followed by oral prednisone. Other regimens that have been evaluated in children with kidney disease include corticosteroids and azathioprine and multidrug regimens such as corticosteroids, cyclophosphamide, and dipyridamole, or corticosteroids, cyclophosphamide, heparin/warfarin, and dipyridamole. However, since spontaneous recovery is often observed in these patients, it remains unknown whether these regimens are superior to no or less aggressive therapy. Plasmapheresis has also been used in a number of patients with severe disease although its efficacy is uncertain. Intravenous immune globulin has been tried in a small number of patients with heavy proteinuria and a progressive decline in kidney function.

Dear Jodie, I read your post this morning, but didn't have time to reply. I took your message to church with me. I don't know if you are a religious person, but I prayed for you. Although I prayed for healing, I prayed more for strength and endurance for you. You seem like a very intelligent and loving person who has had a very tough road. Already, you are inspiring your son and others, including me. I wish we could take away your pain, but since we can't, we will cheer you on as you work your way to full health. Please don't feel alone. If you need antidepressant or counseling or whatever it takes to get through this-please do. Now at least, you have some explanation for why things have always been so difficult for you. With this explanation comes the realization that you are far stronger than you ever knew. Your best times and health are ahead of you. Teresa

Thanks for posting this. We have an appt in six long weeks with the ENT. Hopefully the LLMD will recommend we get them out as well. Great to know that those chicken nuggets were fine so soon after surgery! Good news for you.

DS, 11, is even now being treated for a sinus infection (strep) with Bicillin shots. I kept telling every doc that he always seemed to have a sinus issue-like trying to clear something out that he just couldn't get. Finally, doctor #11, did a nasal swab. She put him on the Bicillin and it is getting better. Stick to your guns-you live with your child so you know them best.

I just wanted to thank you for your wonderful story. My DS, Ryan would still be in a horrible place if it weren't for the moms on here that kept insisting that if PANDAS treatment didn't work, check for Lyme. Thank you for being so open about the ups and downs of treatment and that PANDAS is not the only possibility. Cobbie

WOW, this blows me away. Keep us posted on what you find out. Cobbie

I don't believe there is a blood test. DS's LLMD had him do an Iodine Urine Test. He took four capsules (of what I can't remember), took a baseline urine test and then collected urine for 24 hours and recorded output and then put a representative sample in to be analyzed. Don't have results till next week. Ask your LLMD, they should know. Cobbie

Suzan, That was quite the long appointment. Your doc sounds very caring! She doesn't happen to be in Lee's Summit, MO does she? This sounds so much like the advice that DS's doc gave us. I hope that you will feel better soon and your girls as well. Cobbie

Ds, 11, kept complaining of sore tooth. Took him to the dentist and he said the tooth was a little loose but not ready to come out. Took him to the LLMD for his consultation, mentioned the tooth pain and how he always seems to have some nasal issue going on, although no drainage or green snot. He kept trying to blow something out of his nose that would never come out. She did a nasal swab (not fun) on both sides and lo and behold-STREP! If your son has red or pink cheeks or ears, it could be strep. If they have facial pallor, especially around the mouth, it could be strep. He is on Bicillin shots and while not completely free of the strep, his tooth pain is less and his red cheeks are only slightly pink. What I am saying is-have your son's nose swabbed, but be prepped for a battle. If there is infection, it hurts. This kind of strep will not show on a throat culture and the titers may not rise, even though the strep is there. Good luck. Cobbie

Three different docs said NO to any shots/immunizations! Two were LLMD and one was Dr. K.

I am so sorry that you are going through this. The only thing I can think of is calling the doc and asking if you can decrease the amount of antibiotic for a short time to give his body more time to detox. Also, water, water, water. This is something I am very scared about when we get to this stage for DS. My prayers are with you. Cobbie

Emerson, you continually amaze me! I think our kids (including you) are very smart and just want to get better no matter what that requires. Your mom may be dealing with some guilty feelings about how she has dealt with your illness over the years. Especially from when she didn't know you had an illness. Maybe that AHA! moment from Mystery Diagnosis will open her mind just a little more. You are a tenacious young lady! Keep up the good work. Cobbie

DS,11, is on Bicillin LA at 2.4 million units (adults dose based on weight) for strep infection deep in sinuses. Doc is convinced he has strep along with Lyme. Bicillin is supposed to help both issues. Here's the thing--he does great on the Bicillin for about 4 days and then he starts getting very anxious and clingy. He gets his shots on Friday afternoon, but by Wed night or Thursday, the anxiety is back. He is still going to school, but I basically have to ramrod him that he is going no matter what. Question: Can this medicine be dosed more frequently? We see the doc again next week on Sat., so I may need some backup data for my request to increase the dose. I do see improvements in his physical appearance--cheeks are not as red, less snorting and snuffling, less mouth breathing, so therefore less buildup on his teeth. But we have been on this med for four weeks, soon to be five, and every Thursday is the same deal. Anxiety and not wanting to go to school. Wanting to stay home with me, even if he can't watch TV or play video games. This is serious! Thanks, Cobbie