NancyD

Thanks for the insight, ktdommer. As much as I need to file sooner rather than later the thought of hiring an attorney worries me, especially when I may have to pay out of pocket for IV abx. At least I can complete the paperwork and then decide.

I know, ktdommer, this worries me too!

Powpow, somehow I missed this post. I'm delighted to hear your DD is doing much better now...such great news! We tried Riluzole several years ago but it was disastrous for my DD as it caused severe motor and vocal tics and took months to get rid of -- only after doing HD IVIg. After mentioning this to our neuro-Lyme specialist he told us Namenda has very different properties. DD cannot take any psyche meds. We tried more than 40 over the years. They only make her worse. Now I understand why after looking at her 23andMe results. You're right, it's as important to focus on autoimmune aspects as it is the underlying infections. Our neuro-Lyme doctor believes it was DD's congenital Lyme and co-infections that caused her autoimmune problems, which in turn caused the PANDAS and Hashimoto's. That is why he is recommending twice daily IV abx and weekly LD IVIg in addition to Namenda and everything else we are doing (abx, antimicrobials, detox, supplements, etc.). My daughter was treated with multiple abx, herbals, homeopathy, the works for close to a year before the PICC was placed. She was only 10/11 then. She is over 16 now. 5 years of her life lost, in ######. She now has only some OCD behavoirs and anxiety and a few tics. That is it. It is a miracle. She was room-bound, like your daughter. Did not speak, only screamed. Incontinent. raging. suicide attempts. self-harm (cutting legs, neck). We did try Riluzole, which, if I remember correctly- is similar to Namenda. I did think that offered some relief, though not enough for the severity and crisis situation at the point she tried it. I am really hopeful for you with the namenda! another thought, has she tried a tricyclic anti-depressant (clomiprmaine is one)? That, at very low doses (25mg) has also offered a bit of OCD relief for both my girls (i have another that was clear-cut PANDAS & she recovered after pex, steroids, ivig and intensive CBT). SSRI's made one daughter violent and worse- but clomipramine seems to be helpful. The treatment she recieves now (since aug 2013) is monthly IVIG 1g/kg, cellcept, clomipramine, plaquenil, aspirin, IV solumedrol monthly & a round of rituximab in April. We started seeing big changes by about 3-4 months of this new protocol. The only other time she recieved relief was after pex (twice) and after high dose steroids- though those improvements were much smaller and short-lived. The new team treating my daughter has found anti-cardiolipin antibodies and an undifferentiated connective tissue disorder (based on symptoms and postive RNP antibodies.) This quick and agressive treatment has made a world of difference. I am always concerned that people may focus on infection and be missing the autoimmune portion-(my personal soapbox!) and that is why I asked about the Hashimoto's.

Here's an explanation from www.disabilitysecrets.com/page5-13.html "The main difference between Social Security Disability (SSD, or SSDI) and Supplemental Security Income (SSI) is the fact that SSD is available to workers who have accumulated a sufficient number of work credits, while SSI disability benefits are available to low-income individuals who have either never worked or who haven't earned enough work credits to qualify for SSD. While many people don't distinguish between SSI (Supplemental Security Income) and SSDI (Social Security Disability Insurance), they are two completely different governmental programs. While both programs are overseen and managed by the Social Security Administration, and medical eligibility is determined in the same manner for both programs, there are distinct differences between the two. What Is SSI? Supplemental Security Income is a program that is strictly need-based, according to income and assets, and is funded by general fund taxes. SSI is called a "means-tested program," meaning it has nothing to do with work history, but strictly with financial need. To meet the SSI income requirements, you must have less than $2,000 in assets (or $3,000 for a couple) and a very limited income. Disabled people who are eligible under the income requirements for SSI are also able to receive Medicaid in the state they reside in. Most people who qualify for SSI will also qualify for food stamps, and the amount an eligible person will receive is dependent on where they live and the amount of regular, monthly income they have. SSI benefits will begin on the first of the month when you first submit your application. What Is SSDI? Social Security Disability Insurance is funded through payroll taxes. SSDI recipients are considered "insured" because they have worked for a certain number of years and have made contributions to the Social Security trust fund in the form of FICA Social Security taxes. SSDI candidates must be younger than 65 and have earned a certain number of "work credits." (To learn more, see our article on SSDI and work credits.) After receiving SSDI for two years, a disabled person will become eligible for Medicare. Under SSDI, a disabled person's spouse and children dependents are eligible to receive partial dependent benefits, called auxiliary benefits. However, only adults over the age of 18 can receive the SSDI disability benefit. There is a five-month waiting period for benefits, meaning that the SSA won't pay you benefits for the first five months after you become disabled. The amount of the monthly benefit after the waiting period is over depends on your earnings record, much like the Social Security retirement benefit." Once the individual turns 18 they do NOT factor in parents' income for SSI.

Wow, ktdommer, I did not know the process could take years! I better get moving on the paperwork. Do you recommend hiring an attorney from the get-go to ensure all the paper work is in order and worded properly? I'll check out Lymenet. Thanks for the tip. Which insurance carrier do you have? I should get DD's subclasses checked again. In 2010, before doing HD IVIg 12 out of 14 were low. I really hope BCBS will cover IV abx and IVIg without too much of a fight. They covered monthly IVIg for 18 mos in 2008-2009 based on low IGG levels but once the levels were up they stopped. I had to move to HPHC for 2 years so it would be covered for a few more infusions. But the infusions stopped working in 2010 so we stopped -- 'course, DD just started treatment for Lyme and before Bart/Babesia was dx. Now we're back with BCBS.

T_anna, I'm not so sure LDN is good for post-neuro autoimmune Lyme. We tried CBD Hemp Oil but had to abort as it was not helping. Then we had it ART tested and it came out neutral so we didn't bother to circle back to it. We need to focus on glutamate receptors more so than opioid receptors.

Ktdommer, did you use the Lyme dx for both IV abx and IVIg? Or does he have low IGG levels? That's great you got coverage! Did you have to fight for it? We're using ILADS, integrative, and ART doctors in CT, NY, and CO. She's been on all sorts of abx over the years and cyst busters as well as Antimicrobials and herbs. Currently her protocol rotates every month for herbs and Antimicrobials and every 2-4 months for abx, detox, and anti-fungals based on ART testing. She is on Mepron, Mino, Augmentin XR, Diflucan, A-Bart, Teasel, Samento, Apo Hepat, Mimosa Pudica, and supplements. She just switched from Rifampin, Mino, Augmentin XR, Artemisinin, A-Bab, A-L Complex, MC-BAR-1, Cumanda, and Ampho B. We have not yet filed paperwork for disability. I must get moving on that. I was debating whether to do it myself or hire an attorney so it doesn't get rejected. Did you do it yourself? I know, it is a real difficult age to be so sick. My DD lost her entire childhood. We've been at this for 15 years but only housebound since Sept. I'm sure her TBIs were congenital. Any time you'd like to talk, just PM me. Nancy

Ktdommer, this gives me hope. As much as she hates the thought of an IV in her 24/7, my DD18 wants the IV abx. She's tired of living in her room and never leaving the house. After a 3-mos IV abx trial of Rocephin our neuro-Lyme specialist is recommending weekly LD IVIg (.05 grams / km) for a min of 4 mos. Did your insurance cover your IV abx for 9 mos??

Yikes, what an awful experience, powpow! Was she treated for Lyme and Babesia first for a while? We've been treating PANDAS for 11 years, Lyme and Bart for 3 1/2, Babesia and Hashimoto's for 4 mos. We started with abx, then HD IVIg, monthly LD IVIg, more HD IVIg, added more abx and cyst buster, then added Antimicrobials and herbs, doing ART for past 8 mos. Also been treating methylation for 2+ years. I checked her labs and Hashimoto's seems to be under control with Armour thyroid and GF diet. Primary symptoms are severe anxiety, OCD, skin picking, and mood dysregulation. DD has been homebound for 10 mos and has been in and out of hospitals. Had to withdraw from school and rarely comes out of her room. Her Glutamate and Dopamine neurotransmitters are high. We are going to try Namenda first before doing IV abx. The neuro-Lyme specialist we went to suggests a 4-month trial of weekly LD IVIg (.05 grams / kg) after 3-mos of doing IV abx. If we don't get insurance coverage for either IV abx or IVIg I don't know if I can pay out if pocket -- our out-of-pocket costs are already $50,000-$75,000/year. One thing that can cause psychotic-like symptoms in DD is artificial dye and titanium dioxide so we ensure all foods, medication, toothpaste, gum, etc. are free of that. They must cross the BBB very quickly. I will have the Rocephin ART tested first. Powpow, to what do you attribute DD's recovery? Great suggestion sf_mom. We'll start with Shoemaker panel and if that is positive do the Real Time Labs Urine Mycotoxin Test. Thanks powpow and sf_mom!

Did you find it much more effective than oral abx? What kind of line did you use? How did your DD/DS deal with it? What abx did you use? How long before noticing a big difference? How long was s/he on IV abx? Did insurance cover it? And how is s/he doing now? Would love to hear about your experience and any suggestions. We are heading there very soon with my DD18. She has Post-autoimmune neuro-Lyme, Bart, Babesia, PANDAS, Hashimoto's. We'll be using a midline peripheral line, I believe, and taking Rocephin.

Both my DD and I have been on Rifampin. My DD twice. The first time we titrated up -- we started with 1 cap per day the first week and then 1 cap BID thereafter. We both had really bad herxing but found Rifampin to be very helpful. The second time she went on Rifampin both the doctor and I forgot to titrate up and the herxing was REALLY bad!! So best to titrate. If you need it dye-free as we do you'll have to have it compounded, although the powder itself is a natural orange (and will turn your pee orange).

Just a note about Spectracell. If your doctor is in NY state you can't do it. You'll have to find a doctor outside NY who will. Not sure about restrictions in other states. I've been wanting to do this test but we see a NY MD. Will ask DD's new PCP to sign off on this test. Re Zinc we use and like Thorne zinc picolinate.

Another excellent resource -- you get a free customized report with LOTS of great info from Amy Yasko: www.knowyourgenetics.com

Hmmm...here are some blatant discrepancies I found: Sterling's, Genetic Genie, and Nutrahacker reports say MAO A R297R (rs6323) is ++ LiveWello says it is -- Sterling's report says CYP1B1 L432V is ++ LiveWello says -- Genetic Genie and Nutrahacker don't report on this Sterling's report says SOD2 (rs2855262) is ++ LiveWello says SOD3 (rs2855262) is -- [note: LiveWello refers to rs2855262 as SOD3 whereas Sterling refers to it as SOD2] Genetic Genie and Nutrahacker don't report on this Sterling's report says HLA (rs2155219) is ++ LiveWello says -- Genetic Genie and Nutrahacker don't report on this Sterling's report says MTHFS (rs6495446) is ++ LiveWello says -- Genetic Genie and Nutrahacker don't report on this Sterling's report says PEMT (rs4646406) is ++ LiveWello says -- Genetic Genie and Nutrahacker don't report on this Sterling's report says IL5 (rs2069812) is ++ LiveWello says -- Genetic Genie and Nutrahacker don't report on this

They all have their advantages and disadvantages. I ended up doing a few reports to compare. LiveWello did not report on VDR taq (or VDR Bsn), which is important and I didn't find out my DD was VDR taq ++ until I recently ordered Genetic Genie. That gene alone explains a lot of my DD's problems. Especially when combined with a few other mutations. Genetic Genie reported on the fewest genes. LiveWello and Sterling's report were very similar but laid out a little differently. They both report on 5 different CBS genes, yet the literature only discusses the importance of two. Naturally my DD only had the CBS A13637G ++, which the literature never discusses. With Genetic Genie she does not even come up CBS ++ as they only report on 3 CBS genes. So what does that mean -- the others don't have as much importance? I don't know. Another report I found helpful as an add-on was Nutrahacker as they specifically tell you what supplements to avoid and which to consider using based on your specific mutations. So in the end, I'm glad I had Sterling's (I like the explanation he offers), but I am also glad I had Genetic Genie (it was worth $10 to find out DD was VDR taq ++), and I really like Nutrahacker as an add-on (not by itself).

Yikes, starting at 10 drops BID would have sent my DD to the ER! We always start at 2 drops BID and work our way up every two days with another drop of each. We only go up to 15 drops though and rotate every one or two months to other antimicrobials. Just when we reach 15 drops it's always time to switch. Last month DD was taking A-L complex along with A-Bart, A-Bab, and other Antimicrobials in a few ounces of water. This month we dropped A-L complex and A-Bab and added in Samento. I started by putting her Antimicrobials in cranberry juice and then graduated to room temperature water. She definitely herxes more with these than she did with abx.

So far nothing to report (either positive or negative) at 5 or 10 drops. Will increase to 15 drops next. Nancy can you let me know how your dd does? I am considering for ds as OCD is our biggest and most lasting symptom.

Yes, I definitely will, pandasphilly! Nancy can you let me know how your dd does? I am considering for ds as OCD is our biggest and most lasting symptom.

Thank you for sharing your experience with CBD Hemp Oil, t_anna. I have been considering it for some time for DD's anxiety/OCD while we treat Bart/Babesia. It was just the push I needed to order some from Bluebird Botanicals. Just received ours today and will give first dose tonight. Is there any reason I can't put the drops in a teaspoon of cranberry juice and have her hold it under her tongue for 60 seconds? Will this dilute it too much? Our doctor suggested we start with 5 drops BID, then increase to 10 BID, then 15 BID.

Blood tests can only tell if your body has H pylori antibodies. It cannot tell if you have a current infection. A stool test can detect traces of H pylori in the feces.

Are you referring to an integrative psychiatrist in MA? I have heard really good things about him. My DD's dietician/nutritionist, who used to work for him, highly recommends him. I have a great deal of respect for her -- she understands PANDAS and TBIs so I suspect he does too.

Bumping

Over the years we had great difficulty putting my DD on D3 at any dose. We tried multiple carriers and different dosage. Regardless, it caused severe mood dysregulation and rages. In 2010 her levels dropped to low single digits and I had no other choice as she was getting one infection after another. We put her on 10,000 IUs per day. It took a couple years for her levels to increase to 65 but it was a rough few years. She was still doing poorly (re anxiety, OCD, and mood dysregulation). In Oct our ART MD tested D3 and it tested negative - meaning her body did not react well to it. We took her off it for 2 mos and her moods were much better but her levels dropped to 40. We tried putting her on 5000 IUs per day for a few days and the rages were so bad we had to pull her off it. She is now off D3 and doing much better from a mood standpoint. DD has Lyme/Bart/Babesia/PANDAS. We may have to use light therapy if her levels get too low again.

Signed and shared. What happened to Justine and Elizabeth was exactly what I feared might happen to my DD when she was at BCH in 2010. This could be any of our children!

My DD also tested negative for Babesia but it ultimately showed up positive with ART after 6 months of treating Bart. Since starting Babesia treatment she is herxing with sweats.