cobbiemommy

They finally called and they are faxing in a prescription for Augmentin XR. I am so relieved. It is always darkest before the dawn.... Cobbie

We have used Emla cream and ice. The insertion is fine, it is the amount of medicine being put in his bottom that hurts (2.4 million units). Tried to get doc to break it up into two doses twice a week, but no go. DS, 11, just said enough. He even made the nurse cry last time because he cried so much. Regular pediatrician thinks he has scar tissue in his bottom now. All I know is that if he does not take the Bicillin or the Augmentin XR we are going to be in a very bad place within another week. Cobbie

I have called the doc's office twice because DS refuses any more Bicillin shots (he's had 24). I have called twice to try to get an idea of what medicine or change to make. We just saw the doc 10 days ago, so we are very current with whole health situation. DS is starting to regress into separation anxiety, fears about dying, crying over his dead grandmother. I am at my wits end. What do you do, when they won't call you back? Cobbie

Mowed the grass today with a riding mower and picked up a few stray toys out of the yard. I also mowed my mother in law's yard which has several mature trees. When I got home I was covered in dust and grass so I stripped down (TMI, I know) in the laundry room, grabbed a drink and headed for the bathroom. Just as I was about to get out of the tub, guess what I saw floating in the water???? A TICK!!!!!! Don't really know if I was bit, but I sent that sucker (literally) off to the lab to be tested. I want to move, but don't think my hubby will go for it. Be aware, the ticks are out! Cobbie

For me, this is a very timely post. We have been treating DS, 11, since late August and we seem to be having a flare of Pandas symptoms-paranoia, anger, anxiety. Doc wanted son on Bicillin shots again, which he is refusing to do. I refuse to try to hold down a 140 lb boy to make him get the shots. I begged the doc to put him back on Augmentin XR along with his Doxy and Zith. I'm trying to get her to do the "Saving Sammy" dose. The problem is, they haven't returned my last two calls. O believe that Augmentin XR uses the same type of med as Bicillin, but it is oral instead of injected. If my assumption is faulty, anyone just jump in here and correct me. I have some Augmentin left from when they switched up his meds., wondering if I should give it to him or not...... Cobbie

Good news. Hope you feel good today, too! Cobbie

Just wondering if anyone knew how Emerson was doing? I'm hoping she's herxing and doing great! Cobbie

Thanks so much! Cobbie

Thanks for all of your replies. We will be checking into all these things. Not sure if our homeowners covers any of this or not. Thanks, Cobbie

Thank you for posting the great news! I'm very happy for her and you!

We just found mold on the drywall in our dining room. I smelled it before I could see it, but then when we took off the baseboard, it was everywhere, so we quickly put the baseboard back. When we first moved into our brand new home ten years ago, we found mold in the same spot because on the exterior, the joint between brick and siding wasn't sealed well. We had someone repair it, but still were having problems with water getting into our tornado shelter under the front stoop. (Midwest=Tornados) We were told the problem was fixed, but... My husband can't take out the wall for a few weeks because it is planting season (we farm for a living). We plan to take out the drywall, insulation, carpet, everything, but don't want to disturb anything till we can seal off the room. This is the room I have converted into an office with my trusty computer. Agh.... Could this explain some of the nasal issues for my son and myself? We go to the LLMD on Monday and will tell her then. Is there a treatment for molds for DS??? I am in a tizzy about all of this. I think this is why my allergies have been in overdrive for so long. When I tested for food allergies, I tested positive for 36 things. My reactions for molds was very high. This is insane. Cobbie

I was able to vote at 8:30 (Central time). We have one day left to vote, but still in first place. Yeah!

Blue Cross Blue Shield of KS denied all of our testing/doc visits, etc. Healthcare Advocates was recommended to us as a useful tool in dealing with the insurance company. Good luck.

Not sure how old your daughter is, but DS has been sick for around eight years and he is making slow but noticable progress. I would say it is never too late, but it will be challenging! Cobbie

DS, takes Artemesia on Thursday and Friday and Mepron on Fridays only. For the last couple of weeks, on Saturday he has a huge bowel movement. This is like none other. I know that these two drugs are antiparasitics, but has anyone else experienced this? DS is starting to have night sweats and crazy dreams, so I think this stuff is working! Whoo hoo! Cobbie

DS is 11, and we have been living through these incidents since he was four. So, basically every school field trip, lately every music concert, sister's athletic events (she is a phenomenal athlete), and church activity (which is kind of why I quit going.) Now we have a reason for his behaviors, Lyme and herx, but I was so ready for the behaviors to be over after we did Ivig last July for Pandas. (they were over for a short while) I think I am just tired of this fight, a lot depressed that we are fighting a different fight, and tired of being embarrassed both for him and by him so many times. We are following doctors orders very carefully. She is our second opinion doctor that the insurance does not want to pay any money for any of her recommended treatments (She is an M.D., but has been successfully sued twice which gives me pause for concern). First doctor is farther away, not that it factors in, and he did not perform all the testing that she did. I feel that he would utilitze the tests she ordered to structure his treatment. Also, we had his 24th Bicillin shot last week and he cried through the whole process. I vowed never again and told my son that. That was probably the wrong thing to do, but he has cried the last three or four shots, and I just couldn't do it again. As you can see, this is more about my embarrassment and hang ups than my sons. I just want to put my arms around him and protect him from everything, but that is not how life works... Signed, Tired Cobbie

DS had a P.E. field trip to the bowling center. I was late getting there but when I got there I could tell he had been crying. He was extremely grumpy (usually is). He went off on another kid and was screaming in his face. I got on to him. Later, he was mad because another kid took his bowling ball out of turn. We have been at treatment since October and it seems like we should be past this by now. I am very sure of his test results, but now I am not sure of his doctor... Any opinions????? This is really hard to watch.... Cobbie

Ds, is supposed to be getting exercise every day especially in the form of walking. Yesterday, we made it one lap around the mall before he was really winded. Today, we walked to a small stream by our house so our Labrador could get in the water. My son is very motivated by rewards (aren't we all). Can any of you think of places to walk/exercise and what the reward or payoff might be for an 11 year old boy? He doesn't want to walk just because the doctor says he has to! I am not complaining, last year when we thought it was PANDAS, he went into full meltdown mode over going to the end of the driveway to get the paper. Just want to make it kind of fun and not such a struggle. Cobbie

Thank you for posting so I can get an idea of how this is going for my son. He has been sick for so long that I don't even know what normal will be, but I know that you and my little man will get there! Get as much rest as you can. Cobbie

Has anyone else seen the EM rash come out after starting Mepron? DS has been on Doxycyline and Zith for a while, but since we started the Mepron, a big oval has popped out on his bottom. Anyone have a similar experience? Cobbie

I'm very happy that you know what you are fighting! You always knew that you were ill with SOMETHING and now you know what that something is! I wish you all the best. Hugs from Missouri. Cobbie

Antibiotics, the only thing that has really worked (and time). Also, DS is taking Neurontin which I believe has some sedative effect. I know it is really hard right now, but hang in there. We made it to some semblance of calm and you will too! Cobbie

DS, 11, has the same exact pattern on his legs. It is livedo reticulitis. It is caused by vasculitis in our case. The Lyme can cause an inflammation in the blood vessels, while the same Lyme can cause the red blood cells to be swollen. This prevents good oxygen supply to the extremities. In terms of Lyme, this could prevent the medicine from being distributed to the extremities and the Lyme could hang out there free from detection. Our doctor prescribed Heparin, which is an anticoagulant. This helps the blood to travel to more of the extremities. If you are prescribed heparin, see if you can have it compounded into a sublingual troche. The two a day would not be fun. This would seem to be one more piece of the Lyme puzzle. I don't know if that is considered a herx, as my son had it before he started antibiotics. Cobbie

Dawn, Great news about the Babs. The Bartonella rash can itch. Best thing to do is put Benadryl cream on it if it itches. We are still treating for Bart/Babesia/Lyme but I think the Rocky Mountain Spotted Fever is gone!!!!!!!! DS has not had a new rash cycle in two months! Cobbie

My son's test was reactive without provocation. Of course, the doc did not read the test appropriately so we missed the diagnosis for a year.