First LLMD appt yesterday

[momcap]

DS7 finally had his first LLMD appointment yesterday. I'm really disappointed, as the Dr says he can not rule lyme in or out based on clinical presentation. He said if it is lyme this is not a typical presentation. He ordered a bunch of bloodwork, and asked me to contact Stony Brook and send blood there for a WB. Has anyone else used Stony Brook? I haven't heard it discussed here at all. Just wondering.

 

Dr. quit using IGeneX about a year ago because of their indeterminate results. He says a maybe is not useful. I had to bite my tongue pretty hard since that's exactly what he gave us - a useless maybe. He is not willing to treat without positive labs, and told me to stop giving DS (PANDAS) antibiotics. He said if the labs come back positive we will move to I.V. antibiotics, but in the meantime to stop oral abx. He was unconcerned about my positive IGeneX result, saying if I'm not sick now then my immune system obviously handled it already. He was impressed by our Cunningham results, especially the anti-neuronals and told me that the results confirm an autoimmune process.

 

So, overall I'm feeling at a loss. If it's PANDAS then why did DS get 100x worse on high dose abx? Why during the 2 months on high dose abx did he get swollen joints, rashes, fevers? I didn't think this could be anything else but lyme. If it's not lyme what next? Dr. says to look at genetic metabolic disorders. I feel like I'm back to square one. I guess I built this appointment up too much in my mind, so of course I'm disappointed. Hopefully the bloodwork comes back showing something.

 

Discouraged

[KaraM]

I'm sorry, Momcap, for your frustration. I feel for you.

Also, I can't keep everyone's stories straight. You said you child got worse on PANDAS abx. How long was your son on them? Could it have been herxing? (Sorry if these questions were already asked....)

 

Kara

[mama2alex]

Wow, so many things he said to you send up red flags for me. Is he an ILADS-recommended LLMD or was he recommended by someone here? He doesn't see the connection between you being positive for Lyme and your son's problems? Did he test for coinfections? He wants to do IV abx on a 7 year old if the tests are positive? For how long? He obviously knows nothing about PANDAS if he wanted you to stop giving abx.

 

If I were in your shoes, I'd get another opinion from an ILADS-recommended LLMD.

 

Oh, and I just looked up Stony Brook Medical Center. Here is their page on Lyme Disease (lots of red flags here!): http://www.stonybrookmedicalcenter.org/patientcare/lyme

 

Here's a quote from their web page on treatment: " For early treatment, three weeks of oral antibiotics (amoxicillin or doxycycline) is often recommended. For late disease, the recommended treatment is high doses of intravenous antibiotic for 21 days."

[momcap]

I'm sorry, Momcap, for your frustration. I feel for you.

Also, I can't keep everyone's stories straight. You said you child got worse on PANDAS abx. How long was your son on them? Could it have been herxing? (Sorry if these questions were already asked....)

 

Kara

 

Thanks for your kind words Kara.

I heard about PANDAS back in August and asked the doctor for an ASO titer. It came back at 512, so he gave us 10 days of penicillin. On the 4th day DS literally woke up a different person. My miserable, ODD, mood-disorder, OCD child actually woke up singing!!! He had been refusing to go outside for weeks. That day he woke up singing he went right outside, found a toad in the garden and played with it. He couldn't even touch our pet dog the day before. The toad peed on him and he just washed his hands, changed his shirt, and went back outside - no meltdown, no rage, no hysterics. Previous to that day his germaphobia prevented him from even going in our bathroom. The improvement was dramatic to say the least. He started sleeping through the night, had no pain complaints, etc. After the 10 days ended he went immediately back to knee pains, chest pains, nightmares, up half the night, and miserable behaviour. So we did another 10 days and the same thing happened. After that I contacted a PANDAS doc who put DS on 1 month of high-dose Augmentin. Within 24 hours he turned into a raging monster. He was literally growling at us. He became violent. We had to pull him from school after he attacked another child, trashed his classroom, threatened his teacher and ran away. After an unbearable month on Augmentin we tried 1 month of Biaxin. It was only slightly better. He was still raging, and put holes in our walls, only it would come and go with the biaxin instead of constant like the augmentin. Also while on biaxin he complained of vision problems, numb feet, his elbow turned purple and swelled up, his knee swelled several times, twice he spiked a fever that month, he had several rashes, his arms were "stinging and shocking him". I could go on. I was so convinced this HAD to be lyme. Is this not a typical presentation? What about this would point to a metabolic disorder??!! I'm baffled. I convinced our pedi to keep him on amoxicillin until we saw the LLMD, which was about 2 months, during which time the physical stuff continues: his joints continue to swell, he's had 2 more fevers, rashes, a day where his short term memory just turned-off (scary day!), etc.

 

I was so convinced that we would leave this appointment with a diagnosis and finally know what's wrong. Not that I want it to be lyme, but I would really just like to know WHAT it is!!!

 

Ya, I thought all that was herxing. What else could it be? Am I way off-base? It just feels like I'm back to square one after I thought I was going to finally arrive somewhere.

[momcap]

Wow, so many things he said to you send up red flags for me. Is he an ILADS-recommended LLMD or was he recommended by someone here? He doesn't see the connection between you being positive for Lyme and your son's problems? Did he test for coinfections? He wants to do IV abx on a 7 year old if the tests are positive? For how long? He obviously knows nothing about PANDAS if he wanted you to stop giving abx.

 

I don't know about ILADS since we're not in the U.S., but he was recommended by a lyme group. I've also talked with one of his patients who is being treated aggressively for lyme disease. It all sounded good before I went. I don't want to push lyme if it's not lyme, but what else could it be? I looked at the requisition for bloodwork and I recognized some of the tests - bartonella, erlichiosis, so he is testing for co-infections. He said if the WB from Stonybrook is positive we would do 3 weeks of I.V. antibiotics if DS can tolerate it. Are I.V. antibiotics not generally given to a 7 year old? We stopped abx because we only had enough to get us to this appointment anyhow. DS got strep while on amoxicillin anyway, so I'm just not sure what to do next. I guess we wait on the bloodwork and pray hard for positive results if this really is lyme disease.

[mama2alex]

Momcap,

 

I'm so sorry your family is going through this. From what you've said, it seems like your son's issues are definitely infection triggered. And all of his symptoms you mentioned are symptoms of Lyme and co-infections - OCD, knee pain and swelling, chest pain, sleep problems, fever, rashes, those electric shock feelings, numbness, rages, short term memory problems, all of it! All these things are on the checklist our Lyme doc gives us when we come in for appointments. So don't doubt your own instincts - it sounds to me like you are on the right path.

 

ILADS stands for the Internation Lyme and Associated Diseases Society. Their web site is www.ilads.org. I'd recommend checking it out and learning as much as you can. There are different types of Lyme doctors. Some adhere to the ILADS guidelines and believe that Lyme can become chronic and cause a range of health issues, including neuropsychiatric. These doctors will treat until all the symptoms are gone, even if it takes years. There are other doctors who will treat Lyme, but believe that a few weeks of antibiotics cures it and if the symptoms are still there, it was never Lyme in the first place. These doctors will insist on a positive test and won't venture a clinical diagnosis, but because the tests are so unreliable, a clinical diagnosis is really the only realistic option.

 

I hope this all makes sense to you. I would recommend reading as much of the ILADS site as you can. You can also give them a call to get doctor recommendations - and they may have some in Canada. Also, If you haven't already, I'd recommend you read the book "Cure Unknown" by Pamela Winetraub. I learned so much about Lyme Disease from this book and it reads more like a story than a medical advice book, so its an easy read. You need this information if you are going to advocate for your son and get him the right help.

 

Good luck moving forward! You are doing great, so don't be discouraged.

[kmom]

I couldn't agree more. I know it's hard to find options if they aren't available and I realize it's expensive to travel to doctors elsewhere but we got the same similar answer from a local LLMD (although I don't consider him an LLMD in my book). We so badly hoped he would be THEE dr. for us b/c he was 2 miles down the road but just wasn't the case. He is probably very good for acute cases where it's obvious Lyme but in cases where people have a chronic Lyme infection and no distinct positive labs, he wasn't helpful. This particular dr. went right to IV drugs too w/ a positive result and it scared me. I wanted a Dr. who didn't have a recipe format. Each case is so individualized and my kids didn't fit into his dx and tx style. So we moved on thank goodness. I can't imagine where we'd be if we didn't keep pushing for an understanding dr. to help. It's a night and day difference since finding dr's better versed in Chronic Lyme. So it may be hard to find a good LLMD nearby unfortunately but I can tell you to keep searching. My DS had major rage, frustration, defiance, perfection OCD, etc. and since tx-ing for Borrelia and Bartonella, it's amazingly better! His Igenest WB isn't obviously positive by any means. His Igenex Bartonella IgG was positive but not his IgM so that 1st LLMD insisted it was a past infection and not a current one and wanted to keep testing till it was an obvious positive. It felt like a very slow process while my kids had been unglued for some time. So after that I sucked up the consultation and follow up fee and moved on. Ironically, his office manager/wife called a few weeks ago to follow up (I believe their business is suffering and they were just looking for more $) and she asked how kids were doing and if we decided to take them off the PANDAS abx's in order to do more Lyme testing (which I never agreed to back then or was ever willing to b/c they would fall apart). I explained we went to another LLMD out of state and even got another opinion from Dr. J and those 2 dr's were in agreement that Borrelia and Bartonella were the root cause of problems. The kids were being treated and they were doing so much better. She then tried to backpeddle and said the dr/her husband was open to try some abx's to see if they improved. I told her point blank that I needed a dr. who was confident in tx and had experience treating kids who weren't obviously positive but could make a good clinical dx. She quickly got off the phone and I felt a little satisfaction from telling her our progress but much more satisfaction seeing my kids return to school, sports and a more relaxed state of mind. It's still a work in progress as they herx from Tindamax on weekends but it's expected. Good luck! I hope you find a good dr. who can really sift through your son's symptoms.

[momcap]

I have hit rock bottom. We only had enough abx to get us to the LLMD appointment on Tuesday. LLMD said to take him off abx, they were unnecessary, etc. I've run out of doctors to beg abx from, and I was starting to think maybe they are unnecessary and I'm being crazy. Wednesday (24 hours off abx) DS was VERY agitated at school - he only started going back for 2.5 hours a day recently. He threatened another child. Yesterday, he was agitated again, and so aggressive. Today he is sobbing, he's in pain, he feels sick. He can't explain it, but he feels really bad. He can't tell me what exactly hurts, he just keeps asking me to check him for a fever because he says he's really sick. No fever. He's threatening to kill our cat. He won't eat. I called Stonybrook as per the LLMD's recommendation, but they told me that only a doctor can request a kit. They told me that they recently sent 10 kits to this doctor, so they don't know why he would tell me to contact them myself. It doesn't make sense. I think he was just trying to get rid of us.

 

I am emotionally and physically exhausted, and so tired of fighting. I don't know how to pick myself back up and keep going again and again. I wish I knew 100% this was lyme - nothing would stop me then. But not knowing for sure is driving me crazy. What if I'm throwing all of my energy into this and it's wrong?!?!! Sorry, just had to let it all out. Thanks for listening. Kmom and Mama2alex - thank you for your encouragment!

[kmom]

Gosh, I wish you could get to one of my doctors (or any very experienced LLMD) to help you figure this out. While I was utterly confused w/ our situation last fall, a wise retired psychologist who volunteers at PALyme.org gave me some great advice. She said that looking back at her career, she believes most of her patients had an infectious trigger. She said there's an old medical book for med students about psych symptoms and diseases and the front cover of book has an enlarged spirochete on it. She thinks the author was ahead of his time knowing bacteria causes most psychological disorders. She thinks SSRI drugs have their place for smaller scale issues but the types of issues we parents on this board deal with are much worse and she believes are infectiously caused and many times by the nasty spirochete bacteria.

 

I don't believe my doctors after hearing those symptoms would tell you it wasn't Lyme and turn you away without really investigating--either more testing (provocation testing) or just Rx-ing the the abx to see if there's a herx and then improvement. Gosh, there are countless stories how the sickest people have neg. test results. My kids results are turning positive as we treat. Not to say your son has Lyme and co-inf's for sure but gosh he sounds like my little guy (Borrelia/Bartonella). I used to wonder how such a sweet boy could have these evil moments. It was like his brain was fighting his body but he didn't want it to happen. It's hard, but dig deep to keep up the fight and figure out whatever it is. It's worth it. Try to find a dr. that will back you up 100%. It makes a world of difference. <cyberhugs>

[momaine]

If I were you, with those symptoms in my child, I would beg, steal, or borrow the money to travel to see Dr. J or another LLMD that is recommended by ILADS. He CAN get well. Lyme treatment is not an easy road to travel by far, but what are the alternatives? Without antibiotic treatment that my dd has had since her PANDAS and now LYme diagnosis, I am fairly certain she would be in a mental institution.

[LNN]

Momcap,

I am so sorry you're having to fight this battle. If it's practical, I'd suggest seeing a US LLMD. But considering the length of treatment, and the possible difficulties of filling scripts and cross-border issues, this could be very difficult. There's a book "Insights into Lyme Disease Treatment"http://www.amazon.com/Insights-Into-Lyme-Disease-Treatment/dp/0982513801 that covers the gamut of treatment approaches - from Dr J's aggressive abx approach to others who prefer an herbal-only approach.

 

One idea would be to get this book and see if a particular treatment approach sounds like it might work for your situation. I'm guessing it would be easier to get herbs without needing a doctor's involvement. If you were comfortable trying an herb only approach, you could make periodic visits to a US practioner who could then follow-up with phone consults.

 

Your other option might be to go back to the Canadian lyme organizations and look for other doctor referrals. I think all of us have been thru a number of doctors, even multiple LLMDs in some cases, before finding the right match.

 

I know it feels like a kick in the gut right now. And I totally get how terrifying this is. But giving up isn't an option and there has to be a way to skin this cat. If nothing else, you may want to read up on detox and gut support. These are things you need to do on any Pandas or lyme treatment, so you'd at least be laying a foundation while you search for the right doctor. You're in my thoughts...

[MichaelTampa]

Good job mama2alex for noticing those red flags in the initial post there. momcap, this doctor just isn't going to cut it for your situation, he is just no educated enough about lyme, no other way to say that more plainly. Given you're in Canada, perhaps there are problems finding a good lyme doc. If so, LLM's suggestion is a good one, at least to give you an idea of what's out there, what to look for. There are herbal treatments that you won't need a doctor to do, and could perhaps help you feel more confident lyme is the issue, as you seem to consider that in doubt at this time. The reaction to the herbs might be helpful to see.

 

ILADS does give referrals to lyme docs, I don't know if they have any members in Canada, but you should ask them. Also, you might try lymenet message board. They have a doctor referral section of the message board, and, while I think this is an excellent group and board here, lymenet has many more people and thus a better chance of having someone who knows a doc in your area that can help you.

 

Keep at it. You're almost there, believe it or not!

 

Michael