mama2alex

I think given your situation, your first priority is to find a well respected and experienced LLMD who treats both kids and adults, and who's versed in both antiobiotics and natural treatments. If you start a new thread with a topic such as "Need Integrative LLMD in/near Nashua, NH for Adult & Kids" you'll hopefully get some replies with recommendations. Please be careful with your own treatment. I was sensitive to several antibiotics, but was getting nothing but negative Lyme tests back, so I decided to do an "antibiotic challenge." I became extremely ill and had to stop the abx after 3 days, and my symptoms exploded after that. That was almost two years ago, and I'm still not quite back to where I was. My doctor (an integrative LLMD) has been treating me with herbals for Lyme & co with good progress. The only pharmaceutical I'm on is cholestyramine for mold. Have you visited Lymeinducedautism.com? You might find some resources there as well.

Wonderful news!!!

We are starting my son on A-L Complex this summer. Lyme doc started him on 1 drop a day, going up to 1 drop 2 times a day after 2 weeks, and progressing on that same path - VERY slowly ramping up. Also, we put this and all nasty tasting herbals in a little organic OJ.

Is there a link to an article?

Great news! I vote for B and C! You are in the best position to tell what's working, but for what you've described, a combination of medical treatment and therapy makes sense. It sounds like you're doing the right things and heading in the right direction. Progress can be painfully slow, but you'll get there. If at any time you feel the therapist isn't "cutting it," please remember there is an amazing intensive OCD program at the Rothman Center in Florida (USF). We went through it for our son's school anxiety/refusal, and my only regret is waiting so long to head down there.

I would recommend finding a doctor who has experience treating PANDAS/PANS. If your doctor doesn't know anything about it, who diagnosed? You can start a separate thread requesting doctor recommendations in your area - that should give you a good place to start. Also, I would read as much as you can on this forum and ask lots of questions. There are many experienced moms here who are happy to help.

Why just Lyme and Babesia? Why not test for other coinfections? Also, please remember that a negative antibody test cannot rule out Lyme or coinfections by itself. My son and I both had a number of negative Igenex tests, but we both had many symptoms of Lyme & co and eventually tested positive on the Advanced Labs culture.

Have you tried any sort of anti-yeast diet? It can be very hard to get rid of it if you are feeding it (with sugar and carbs) at the same time.

It sounds like you have an LLMD who's telling you he sees evidence of Lyme in the symptoms and cycling of symptoms, so I would trust that. However, I know how hard it is to just take someone's word, especially when you aren't seeing the results you need in a reasonable amount of time. We had negative Lyme tests for years before going off abx and retesting with the Advanced Labs culture. Have you tested through Igenex yet? They test more of the relevant bands, so there are less false negatives (although there still are, as in our case). Also, if she is being exposed to any indoor mold, this can really hinder Lyme treatment. I would suggest getting a kit from MycoMetrics and testing your house. Even if you don't see mold, it can be hidden. Many people on here have eventually found that mold is an issue for their kids. Once you have the results from the test, folks on here can help you interpret, if your doctor doesn't know how. Something called KPU, which is basically certain vitamin deficiencies, can also hinder Lyme treatment. You can search for KPU discussions on the forum. There is a test for this also, which your doctor should know about.

Rowing Mom has a great symptom tracking spreadsheet that she's shared with us and others. You might want to PM her if she doesn't see this thread right away.

Thank you both for responding! I just texted Diana - great idea. EAMom, thanks so much for going the extra step! I will google Areva Martin and forward her name if she seems like a good fit. So thankful for this forum.

Would you feel comfortable posting a list of what she's been tested for? I think you would get a lot of feedback on what you're missing and might want to request. The "we've tested for everything" response seems like a bit of red flag. It's highly unlikely they've tested for "everything." Has she been tested for Lyme co-infections - Babesia, Bartonella, Erlichia, Anaplasma? Otherwise, I don't have any advice. Just wishing you answers soon!

Some friends of ours need a lawyer, fast. They have not gone the route of looking for infections and other medical causes, as we have, but have had similar issues with their son - minus the sudden onset. They've gone the traditional route of meds, psychiatrists, therapy, etc.. But now there is a disagreement with the doctors and the docs have acted swiftly - calling CPS, having unauthorized communications with the school, and more. Does anyone know of a good attorney in this general area (we're near SF) who has experience dealing with doctors and CPS, and really knows this area of CA law? I'm setting up a phone consult with Beth Maloney today, but it would be good to find someone local for the longer term. Thanks in advance!

Her symptoms scream Lyme and coinfections. Joint pain, fatigue, chest pain, light sensitivity, rashes and droopy eye are not and never have been symptoms of PANDAS. You just can't rule out Lyme based solely on testing, and any doctor who tries to do so doesn't know much about Lyme. My son and I had negative western blots repeatedly, but both were positive on the Advanced Labs culture and are improving with Lyme treatment. Please find a well respected LLMD and get a 2nd (5th?) opinion. Also wanted to mention that I also got the "sunburn" with Doxy and at another point in treatment I developed a rash on my face. When I described it on Google, it came up with Lupus, which had already been ruled out. Lyme has been called the "great imitator" because it's symptoms can look like so many other illnesses. Don't get discouraged. We saw 12 doctors before we got to a Lyme doc. Then when we realized mold was an issue, we switched again to an LLMD with more mold experience.

Prayers coming your way!

My ds, now almost 14, also had a traumatic birth - I pushed for 5 1/2 hours; he had to be vacuum extracted after meconium was detected; I hemorrhaged an hour after birth and had to have emergency surgery. However, his Apgars were good. He had sleeping issues from the beginning, and was obviously sensitive to light and sound. When I eliminated dairy and chocolate, that helped somewhat during breastfeeding, but not a lot. He had to be held and rocked A LOT. First pneumonia at age 3 - subsequent bouts at ages 5, 6, 7 and almost 9. Asthma with illnesses started at age 6, a few weeks after a DTaP booster. Sensory processing disorder diagnosed at 5 and treated with a year of OT, with no real effect. Auditory processing disorder diagnosed at age 7 and treated at age 13. First PANS flare at age 5 with pneumonia - receded on its own after 6 weeks. The big PANS onset came at almost 9 with pneumonia. He has always had separation anxiety, but it became very severe with the big PANS onset. He's been moody, cried easily, and had difficulty with transitions since the beginning. He's had attention issues for a long time - not really sure when they started, but it was early. For us, all evidence points to congenital Lyme and he's been getting better and better with Lyme treatment, et al over the last 3 1/2 years. Keep looking for underlying causes. I really don't buy these diagnoses that just describe the symptoms. I know that out in society it can be helpful to have one (or more) of these diagnoses - especially in school - but they will not get you to real healing. If abx have helped stabilize her, I would fight to keep them. Trust your mom instincts!

Thanks for posting this! I'd never heard of this line.

“Parents have a right to be wrong, as long as they’re acting reasonably," Dershowitz said. "And if two distinguished medical centers have different diagnoses, it should be the parents, not the state, that determines the course of treatment.” Well said!!

Rachel, Coinfection testing is not completely reliable either. My son has tested negative for Babesia, but has symptoms of it and herx's badly when given medicine for it. Bartonella just came out positive the one time. In repeat testing, it has come up negative, even before the symptoms of it had disappeared.

Glad you are finding more answers for your child and yourself! I can relate to the "pain in every cell of my body." That was me until a few months ago. Its great you are starting to feel better! Lyme is so tough to recognize. Most of the mainstream media reports on it are just WRONG. It can look like almost any illness and has been called the new "great imitator" (Syphilis was the first). And last but not least, the testing gives so many false negatives. My son and I never tested positive on the western blot. Mine was absolutely negative across the board. He had a few relevant IND bands, and a positive Bartonella test right after onset of PANDAS, but still it took us over a year to take it seriously and start treating for Lyme and co. He and I finally tested positive almost a year ago through Advanced Labs' culture test. I cried when I saw the results. I had doubted I had Lyme all along and had to get extremely sick before shelling out the money for the culture.

After my son had his first IVIG, he got worse before he started feeling better. At 4 weeks post IVIG things were pretty bad. At 7 weeks post IVIG he started making huge improvements. Dr. K coined the term "turning back the pages," but my belief is that the donor antibodies kill off existing infections (at least in part) and the worsening of symptoms is a herx. If that's true, anything you can do in terms of detox might be helpful. I can't remember if you're doing anything with your diet, but it might be worth your while to eliminate gluten and dairy on a trial basis. I think a lot of chronically ill people find they have food allergies as part of the puzzle. Other than that, I want you to know that you're in my thoughts and I hope to be reading good news soon!

http://www.bostonglobe.com/lifestyle/health-wellness/2014/03/25/permanent-custody-justina-pelletier-awarded-state-massachusetts/puyPhesGkKE6rGLid2VM2L/story.html

I agree with what others have said, but I'm wondering - did neither of these LLMD's run any tests other than the western blot?? If that's the case, I wouldn't work with either of them. With "Lyme Disease" what's usually going on is multiple chronic infections and dysfunctional immune system (weak responses/autoimmunity/allergies all at once), often accompanied by one or more of the following: heavy metal toxicity, mold toxicity, methylation issues, vitamin/mineral deficiencies, etc. There are many tests they should run after the first appointment, not just the western blot! You might do well to start a new thread and ask for recommendations for a good LLMD in your state. Hang in there and don't doubt your instincts.

Bumping this thread for new members. There's an attached list of generics to watch out for in the original post.

I understand your frustration and fear, but 7 weeks is an extraordinarily short period of time in which to see the improvements you have. If she's more stable in other ways, she will probably be more open and cooperative with ERP, which is the therapy for OCD. Your doctor is focused on treating the causes, and what you are telling him is that a symptom is still present. So he'll continue to look for the underlying causes and treat those, and over (a long) time (with luck and a lot of work on your part) the symptoms will all disappear. I wouldn't hop to another doctor this soon - I'd give this one a year and see how you feel then. I read your other post and it sounds like there's been a slight improvement in the eating issues. I think that's what you should focus on - that something changed for the better, even if it's just slight. In the meantime, keep reading and looking for help specifically with the eating issues. I think that the Rothman Center in Florida works with OCD that manifests as restrictive eating, but not sure. We went there for school refusal which had been dragging on for 4 years, and it was miraculous for us. We had been trying to find a local therapist who could help, but no one had the chops. The people there REALLY know what they are doing. My only regret about going to Rothman is not going earlier. The last thought I have it that it sounds like she craves sugar, which could mean that she has a yeast overgrowth. Is she on probiotics? Has your doctor checked for yeast? A sugary diet and antibiotics are not a good mix.