Hopeny

Just because I am sure we could all use a smile, my vole story has a happy/funny ending. Wildlife guy showed up 3 hours late. I will just add to this for informational purposes only that I was expecting sort of a swampy type guy and instead he was pleasantly GQ looking. Anyway turns out that my internet Vole diagnosis was wrong, even though these things look EXACTLY like what I googled, it is apparently a very hungry skunk or skunks digging up for grubs. So no voles, no ticks, and importantly $450 reallocated back to DD's treatment! A small victory in my Lyme war.

Well, the vole holes seemed to be multiplying everytime I went outside - from around 5 up to I stopped counting. I called a wildlife trapper - another major expense on the pile deeper into a financial Lyme pit but this sent me into a tailspin thinking about all the tick nymphs they are carrying. He is going to build a Vole motel that they won't check out of and take them all away. Then going to put down some tick poison. I am extremely tempted to give my neighbor the bill, I hardly know them at all. For the longterm I will use these other suggestions. You know how people faced with challenges in their life say they wouldn't change a thing because it made them who they are? I am not one of those people. Angry again today at the peditrician who so grossly misdiagnosed. Making serious medical decisions I am totally unqualified to make. Trying to put DD back together. Tomorrow will be better.

Is there a house of worship you can approach to ask for babysitting help when your wife needs to make hospital/DR visits? I am sure there would be volunteers happy to help. Also just know, it will get better.

Thank you everyone. I have discovered why I have so many holes/voles - our lovely neighbor is doing something in their yard and has half of their yard dug up. I am tempted to trap them and return the favor. Bill - hmm snakes or mice, that's a tough one. I am with you on the blacktop. I am so with you, DD8 is going to an indoor art camp this summer. The dog has the Lyme vaccine and Frontline every three weeks. I may go to two weeks. I may just go all out war with the Voles and keep the kids out of the yard for the week - it is going to be very difficult but the holes seem to be multiplying by the hour. Insane!

Sorry it is so awful for your DS. My DD had Lyme that went undiagnosed at the first presentation, I hate to tell you this but the symptoms lasted for a good six weeks (I was repeatedly told it was a virus) The first three weeks were the worst, then she slowly got better. This was without treatment though so I hope your son's pain resolves more quickly. On the hopeful side my daughter was given Doxy (part of our late treatment) and it seemed to act very quickly, so hopefully this will be the case. I don't know much about RMSF but I believe you need a longer course of Doxy, like 28 days at least - all of these infections even early require this course. Wishing you the best

Thank you, I was not familiar with these but just looked them up. If you have used them do you know how long it took for the mice to get all the cotton out? I think I would have to keep the backyard off limits while they were out, my DD is a little explorer I have seen organic tick control advertised but this is certainly more economical. More evidence that the tick population is exploding due to more mice, I have never had anything like this before.

Well we have ocassional deer, daily rabbits and now I found these strange holes in our backyard which from a few minutes of internet surfing seem pretty positively made by Voles, a type of mouse - as in mouse, the dreaded tick carrier. I have ripped out bushes in my back yard to reduce ticks - what should I do about these ***** Voles? I have a 2 and 8 year old, the 8 year old has full out Lyme (and PANDAS, in treatment, recovering) and the 2 year old has 2 IGG bands positive on Quest. We have a dog too. I am scared of Permethin but maybe I have to do this. The other options I saw are traps (gross) or crazy toxic other poisons that scare me. what would you do?

I completely understand the financial challenges, could you perhaps get the diagnosis and work with your regular pediatrician to treat it if they are willing to do so? What about trying to get a grant for your DD from Lyme Aid 4 kids?

Stoneybrook still does testing? For some reason I didn't think they did. Do you have a link to their lab. I'd love to see if they take United for my husband. I am about to submit bills for my son and I from Igenex to UHC PPO. I'll post back if they pay. Stonybrook only tests for Lyme, not the coinfections. Link is http://www.stonybrookmedicalcenter.org/pathology/tick. Dr. L. sends to Igenex and SB, I am curious to hear the SB results which we will get soon. Although I am thinking the way to go is Advanced Labs. These WB's seems to be so inaccurate.

Hi. yes Lyme can cause cardiac symptoms, I believe typically late Lyme causes this problem. From what I understand, the line of treatment for cardiac symptoms is IV antibiotics. Sorry I don't have any links handy but if you google "Lyme heart block" you should find the appropriate links. Burrascano has extensive guidelines for Lyme, ILADS.org also has published guidelines. My recommendation would be to go straight to an LLMD. If you go to flash discussion on lymenet.org and post on seeking a doctor with your city/state, you can get recommendations. If I recall correctly fortunately the cardiac symptoms will reverse with treatment, not so much with some other symptoms. There is a new test for Lyme that can look for Spiorchetes in the blood, there are topics posted on this board. It is expensive but maybe in your situation with negative WB's it is the best option to rule Lyme in or out. Good luck to you!

We are seeing a specialist in mid June so I don't know much. I am in an ignorance is bliss period . From my limited reading it seems IVIG (maybe monthly for life) is the only treatment. I am not sure yet, or what we would even do - DD is only 2 1/2. I mentioned it today at Dr. B's office when I was there with DD8 and his PA told me that she has another patient with the same disorder, they are doing IVIG. I have not had DD8 tested yet for this but am going to, hopefully she does not have it too in addition to everything else. Good luck.

Dedee your mention of IGG3 caught my eye. We did a lot of testing on DD2 because of DD8's trifecta (Lyme, Myco, elevated Strep with some PANDAS symptoms but no tics) and DD2's infection after infection. We found out that DD2 has something called a Mannose Binding Lectin deficiency, actually she has almost none of this protein. We are going to see an expert mid-June so I don't know much about it yet except it means a major immune system issue. DD2 also had the IGG3 issue, I don't know if it is related to the MBL deficiency but am just mentioning this to you. I believe it is something not commonly tested for.

wow that is proof positive! - I wonder what the CDC/IDSA response would be to have the photo of the Spirochetes and the negative Elisa!

Of $600 (coinfections only this time, not Lyme) we got around $350 back with BCBS. I get 70% out of network of the maximum allowable amount. They disallow some of the fees. Stonybrook takes my insurance.

Wow I never thought about that. I was sort of thinking it would not hurt our dog to have a round of abx, he is a rescue (was told in a hoarding situatiom) and was then living in a foster family with 10 or so other dogs, half of which were other rescues. Is there a guide for augmentin by weight?

I think shingles is a virus, not to worry you but I believe it is quite contagious because it "sheds". Personally I would probably call the pediatrician and ask, in this case that is something the peditrician should be able to advise you on.

How do you know if your dog has strep? We have a rescue, he contsantly licks the floor (and himself).

Awesome! Yay!

Tpotter could you PM me your list too? Thanks in advance

If I just heard this right, Andy Cohen from Watch What Happens Lyme has/had Lyme, and was misdiagnosed. It is great that this is coming into the public eye, will help put pressure on doctors to become more familar with symptoms, and change treatment guidelines, reimbursement etc. I still can't believe my pediatrician missed DD's blatently apparent case - we could have avoided so much pain, suffering and heartache. I wish I had been more educated too.

Orion very good point about the fluid, I totally forgot about that but we had this problem too - it can cause a lot of pain. We used Nasonex once a day after ear infections to dry up the fluid, not sure why it works but pediatrician recommended and it seemed to help. But DD was older when we started that, maybe 1. I think it is labelled for ages 2 and up. Having one kid with Lyme/possible PANDAS I was worried about DD2 also, who does have sensory issues and some quirks, but her strep titer was thankfully low - phew, and she seems to have a completely different immmune profile (and personality too!) than DD8.

Colleen - when my DD2 was 10 months we were on vacation and she started shaking her head from side to side, just like saying no. She was on amox at the time for an ear infection. On the plane ride home it became really bad and I was scared she was having seizures. We had a rush landing and had paramedics meet the plane. We went straight to a very revered New York hospital with what we thought was a world class children's unit. They checked her ears carefully and said they were clear. I was told by the attending pediatrician and resident that it was "behavioral", she was imitating me. Wanting to believe them but knowing something was wrong, I went to ped the next day who quickly told me she had a double ear infection. He gave her a stronger antibiotic, and the head turning stopped. Ped told me it was their way of relieving pain. DD had very difficult ears to see into so I started seeing an ENT. This may be something to consider. Also does Advil stop the head turning? this may be one way to figure out if it is pain relief. Oh and unlike her older sister, this DD is a TERRIBLE sleeper Has almost never slept through the night. thank goodness she is as sweet as could be to make up for it I hope it turns out to be something simple as it did in our case.

Cobbie - I know this is the worst, most helpless feeling - my previously normal, happy DD8 became fairly suddenly suicidal. We took her to a psychiatrist - I think this would be really important to have your DS see someone in the interim while you are waiting for treatment. My DD is now being treated for Lyme, Myco, elevated Strep - we don't know what the primary trigger is (some form of PANDAS, Lyme, Myco) but I can tell you with antibiotics combo and low dose Zoloft (I didn't raise the dose like I was supposed to because I started to see improvement with abx) she is almost back to herself. It was very sad and scary (still is) to put her on Zoloft but we didn't have an option, we felt it was too risky to take a chance. The extra support of therapy is a huge help, and helps me with some of the pressure as I can call the psychiatrist for guidance if any issues come up and I know I am not alone. I am also taking DD for accupressure, it seems to be soothing to her. Not sure if that is an option but maybe it could help. I also allow myself 10 minutes a day to feel completely sorry for myself, I told DD this and one day she said Mommy could you do an extra 10 minutes today, so we can do it together? It was very powerful, and I think allowing it to happen in a time frame allows a release but then helps you go back to fighting it, and gives you some control. It's important for your DS to know, that his pain will get better. It may take time, but it will.

EAMom my DD has Lyme, Lyme co infections, Myco, elevated Strep titer etc. Although only 8, most of her friends are going to camp this year, if she is God willing healthy next year I have told her she could go - however I am planning to speak to the medical department in advance and ask them to check her every other day. Frankly I am terrified but not willing to let this thing rule our lives. I have read about camps having tick prevention programs - and think this is a prefectly reasonable thing to ask the director about. Doxy can cause sun senstivity so I would not use if not absolutley required. Good luck

I spoke with an adult who swears her Lyme was cured with Samento, it's Cat Claw but with some properties removed - not sure of the details. We are just starting with ABX and I wanted to try that first before overloading DD's system. It must be so upsetting to be going through this again.