FROM PANDAS TO LYME

[hugs2day]

Hello, I'm new to Lyme forum, please indulge me I have a lot to explain and questions to be answered.

 

First, I have two boys with PANDAS and long history of strep and/or Ear Nose Throat (ENT) infections. Youngest had his tonsils out because they were so infected he couldn't breath or eat, two months later he was possessed by PANDAS followed by older DS taking on OCD/emotional liablity and both have been under treatment since (eg. Azithro/PennVK). Daily antibiotics.

 

Now I am here and I see so much of my symptoms on this LYME forum.

 

To begin, I was bit by a ferel cat a few months before I got pregnant in my wrist area and it resulted in an bad infection that had to be treated with antibiotics. Fast forward two years later, I have another baby, and I have health problems that include shortness of breath, fatigue, depression, sensation of stabbing bites on my feet, sore feet, positive ana titer (determined not to be lupus), enlarged spleen spent two days in hospital with no answers. 9 months later after many scans and tests told my gallbladder works too slow and it should come out, no gall stones, just dumps slow. Gallbladder is removed and I developed chronic staph after surgery although the lesions never cultured just looked at and I was given minocycline often. Two years later I still have most of the those itching, sore fee, etc. plus many more symptoms listed on this forum.

 

Fast forward)) while I am going through all this my youngest son is getting sicker and developmentally delayed. He has night terrors and staring spells, seperation anxiety, sleeping problems,gastro problems and is H**l on wheels to care for. Always sick with ear infections, throat infections, snores @ 2 years of age. ETC. I was told he has autism but now that he is being treated with Azithr he looks better than I have ever seen him all previous symptoms have dramatically improved and some disappeared all together. So I am pretty sure chronic infections were plagueing him his whole life and if he has autism it was induced by infection. My older son is typical.

 

SO, I think I have LYME or some kind of coinfection from that cat and I gave it to my kids. Is that possible? So could they have PANDAS and co-infections? I was given antibiotics during both births because I was Group B positive and both were ceserean section deliveries. We have no known tick bites and we live in the desert southwest, just the history of the cat bite. My oldest was sick all the time with ENT infections and my youngest was born with an infection given antibiotics shortly after birth and he is the one that really gets bad neuropych symptoms and it extremely itchy and has restless legs....etc. so many symptoms that cross over from PANDAS/Autism to LYME related symptoms.

 

Any knowledge/experience you could share to help me minimize my research would really be appreciated it is so complicated. It is clear antibiotics keep my kids stable but not 100%. Is it time to find an LLMD for my kids or should I give it more time on Azithro (1 and half years) and PANDAS protocol? I am for certain going to ask my internist to run the Quest labs on me to start with. Please advise. Thank you.

[LNN]

I'm sorry you're in this place. I understand how frightening it can be. It does sound like you have good reason to suspect infections and to see someone who will not think you're crazy for wanting to go down this road. It can be hard to know what to do first, with so many things on your plate. But it sounds like the first order of business is to get yourself checked out and on a treatment plan. You can't be the best caregiver if you're sick.

 

You can ask your PCP to run a bartonella antibody test. Specialty Labs, a subsidiary of Quest, has a decent test. But be sure to request that they run it thru Specialty Labs and not one of their other labs. You can also ask for a standard Western Blot lyme test - you may not get a clear result, but if you do, it will save you the expense of having to do additional testing.

 

I think you can start with your PCP for this, but eventually you're going to need a lyme specialist if you decide to pursue treatment. Most LLMDs (lyme literate MDs) have waiting lists of several months (tho you can get on a waiting list and sometimes get in within a few weeks). I'd make an appt with an LLMD while you wait for lab results, so you don't lose additional time.

 

Once you have some idea of how you're going to treat yourself, you can see if the LLMD you chose treats kids as well. It's a complicated ball of string and there's no cliff notes version. Each of our kids seems to have unique twists. Given your kids histories of frequent infections, it's possible they have a zinc deficiency (you can google pyroluria or kryptopyroluria or mauve factor for info). So I'd probably look for an LLMD who's more of an integrative doctor - someone who will consider less traditional labels and more comprehensive treatments. That was key for my son.

 

I know you just want someone to tell you what to do, or grab one book that will explain it all so your head can stop spinning. But no such book exists and if it did, I think it would be too much to take in all at once anyway. It's a peeling onion thing. Start with yourself and see where the trail leads. But be encouraged by the fact that there are treatments that can help your kids and yourself and your research skills have already taken you farther than many people. You will get your own health and your kids' health back - it will just take time.

[momcap]

Hi hugs,

 

Welcome! I can really relate to your post. I have 3 boys - one diagnosed with PANDAS, and 2 with less severe PANDAS-like symptoms. We have dealt with almost all of the symptoms you listed for your kids, and I share many of the symptoms you yourself have. I started out at the PANDAS forum, and antibiotics helped my PANDAS son a lot, but not 100%. I still had more questions than answers, and wondered about some symptoms that were not explained by PANDAS. That led me here, and like you I recognized so many symptoms, but was completely overwhelmed with no idea where to start. Now we are 6 months into lyme treatment (high dose combo antibiotics and integrative supplements) for my 3 boys. The result - PANDAS DS8 is a completely different kid. Well, right now he's off antibiotics for 4 weeks for a new test, and he's a nightmare, but prior to stopping antibiotics he was doing so well. He no longer had any symptoms of pdd, mood disorder, and anxiety disorder. His verbal tics were gone. OCD and germaphobia were almost gone. He caught up academically. He was sleeping normally. Really, it was a miracle. His teacher, principal, our neighbours, and everyone who knows him can't believe the difference. DS6 had chronic congestion, migraines, and photosensitivity. They are gone. DS5 was always sickly, constantly getting infections, no stamina, etc. In the last 6 months he has not had one single infection. He only had 1 minor cold so far this fall and winter. He went on an 8 km hike with us, and didn't need to be carried. He couldn't have walked 10 minutes before. So please know that there is hope! I was so overwhelmed I could hardly function and had no idea what to do next, nor the energy to do it. But somehow we've made it this far, and now we have a plan and hope for the future. You will too!

 

Your cat bite, and foot symptoms do suggest bartonella. I agree with LLM that a bartonella test and lyme western blot would be a good place to start. There are high rates of false negatives with these tests though, so don't let a negative result discourage you. If you have the symptoms, and the treatment is helping, then don't worry so much about the testing. These are all clinical diagnoses - and tests can only lend weight to the clinical picture. That's why I think it is most important to see a good LLMD. They can guide you on what tests are worthwhile, but they will treat based on your clinical picture and response to treatment. You will probably have to travel. Good LLMDs are few and far between. We travel 12 hours each way to ours!!! Yikes! But my kids are getting better and that's the most important thing. You can do another post here asking for a recommendation and giving the general areas you would be willing to travel to. Or you can check lymenet.org. They have a flash discussion with a section for seeking a doctor. Or you can contact ILADS and ask for a recommendation. Not all LLMDs will treat kids, so that might be an important consideration.

[hugs2day]

Thank you! Your posts were a huge help and does give me a place to start and hope. Thank you so much!

[cobbiemommy]

Just wanted to add in my two cents. There is a book that I found helpful, The Lyme Disease Solution by Dr. Kenneth Singleton. His suggestions are helpful and the treatment plans are a good guide for helping to whip this disease. (Not everything is 100% of how you will proceed with treatment.)

 

Also, have your children ever been seen by an immunologist. As I have been researching, I have found guidelines that say a child ill with three or more sinus/ear infections in one year should be evaluated for immune deficiency. Your ped could get you an appt with an immunologist that would be hopefully be covered by your insurance. Wish I had known that little nugget 11 years ago. A child with a compromised immune system does not have the capability to fight off infection, sometimes not even with antibiotics. Immunologists usually have very busy offices, so try to get your appointment right away.

 

My opinion would be to defer any vaccinations until you know what you are dealing with. I am not saying don't get them, I am just saying to find out if your childs immune system can handle them before you do any more.

 

My child is a different child from the he**ion he was just a little over a year ago. He is back to being loving, kind, intelligent, and funny. That being said, he is still very fatigued and has weight gain. Some of his issues are viral as well as bacterial. As you peel back the onion layers, that is definitely one to look at.

 

Just remember, Marathon, Not a Sprint!

 

Cobbie

[aidansmom]

I think you have gotten some good advice here. I also immediately thought Bartonella when I read your post based on the cat bite and symptoms. I think finding a LLMD would be good.

 

Also, your description of your younger son sounds so much like Aidan. We believe he has congenital Lyme and Bartonela (test was neg for Bart but symptoms support it). Early on he had ear infections constantly starting at 6 months and later at 3 years olds he had multiple documented strep infections (I wonder if strep was a player earlier). He also had sleep issues, GI issues (reflux started after birth), a movement disorder, crazy behavior. And he is developmentally delayed and the gap only got worse as he got older until we started on the PANDAS/Lyme trail when he was 7 - then things started to improve. We are far from being "normal" but it is much more managable and it is getting better.

 

The good news is that you have found this earlier than us - I only wish that when my son was younger we knew to go in this direction. It is a long road - but filled with hope as well as bumps along the way!

[SSS]

Everyone has replied excellent and wise, which I am not feeling today,

but I feel compelled to say I swear feral cats were my own downfall.

 

Although I have been a hiker all my life (no more!) I had never pulled off a tick (and I know that can mean squat)

But, 14-15 years ago, living in a little place backed up to hills/woods, I tamed and started feeding a mama feral cat and her kittens outside my front door-picked them up, petted them,

scratched, probably bit, and fleas can transmit.

I can trace bartonella symptoms from there.

I am no longer a cat lover (and have no pets)

 

You'll be okay--- hate to say welcome, but welcome.

[Suzan]

Hi, I posted earlier but it didn't take and just now relized it. I'll have to spend some time to get it all back, but wanted to say HUGS! Follow your heart and you will get there. PANDAS treatment got us to one level and lyme is taking us the rest of the way, I hope. We are MUCH better and still working on it.

 

Hang in there, you are not alone. I hope you do find an LLMD and get evaluated.

 

Susan