What has been your experience w-IV abx?

[NancyD]

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.

Edited June 20, 2014 by NancyD

[PowPow]

My daughter did no better with IV abx, She had Rocephin for about 4 months. It was a PICC line in her left arm. She had Lyme and Babesia.

In fact, she worsened dramatically during that time period. Hard to say it was the rocephin, but I was very suspicious. These antibiotics are powerful drugs and have the capacity to influence neurotransmitters. Considering that there is very little reliable testing to determine the offending neurotransmiiter(s) in PANS , nor to determine if an excess or lack of said neurotransmitter if the problem, I think this situation could be ripe for danger.

My daughter became truly psychotic while using IV rocpehin- at about the 3 month mark. She did not recover from this psychosis, even remotely, until she was given high dose oral steroids 3-4 months later. That improvement was dramatic.

 

as to your specific questions:

PICC place in Oct/Nov 2009, IV rocpehin daily or maybe 5 x week, until end of feb/beg of March. Psychosis began mid- Feb. She did not recover until Dr L began oral steroids end of May 2010 (first time we saw her)

Insurance paid for line placment and all meds/supplies for 30 days - all the cover for Lyme tx.

After that we were on our own. The hospital system I am employed at has an employee discount- I was able to purchase rocpehin at cost. I found a homehealth care company, run by a friend of a friend, who provided me with supplies at cost. (I was lucky!) The changes must be done by a professional (at least an RN)- we were able to handle that ourselves and with assistance from a friend when we needed mutiple hands- but it was still a very expensive deal. I think the Rocephin would have been like $3K /month without my discount . the LLMD charged about $100 a week for the changes by her nurse, but I, thankfully, did not need that.

 

How is she now? She is great- but not from the IV abx. She has her autoimmune disorder treated by a very aggressive and intensive team and is doing great- like 90%. Literally.

I see you wrote she has hashimoto's-= has this been treated completely and ruled out as the cause of whatever symptoms she has now?

I am not trying to add confusion to your decision on IV abx. I just want to share what happened to our child.

 

The IV abx, at most, created a psychotic disorder, and at the least, did not help the disorder. Thorough, consistent and repetitive autoimmune treatment saved my daughter.

[sf_mom]

One thing I would check prior to IV antibiotics...... would be to completely rule out mold.

 

Real Time Labs Urine Mycotoxin Test and Shoemaker Panel are a must in my opinion. Our experience is mold can really suppress the immune response, antibiotic therapies often only keep symptoms in check and typically there is very little improvement on them with tons of inflammation. Steroids can help... good friend of mine with Lyme et al is on a low dose steroid for adrenal fatigue and they are necessary to maintain health currently. Ultimately, she has adrenal fatigue that is being driven by continued mold exposure, it is visible black mold leaching through her roof from air conditioning unit. She is in the process of abating the home. She is no longer on antibiotics for Lyme et al and only detoxing for mold.

 

Our experience: DD was only able to maintain recovery, each time we eliminated one antibiotic she seemed to regress, she has immune deficiencies across all subclasses, she is currently getting monthly IVIG, she also has the highest levels of mycotoxin (mold) results our LLMD has ever seen. She had more ASD symptoms than PANS. She also showed Gluten sensitivities and antibodies for Celiac's..... which can indicate mold as antibodies cross react with each other.

Edited June 21, 2014 by sf_mom

[NancyD]

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!

Edited June 22, 2014 by NancyD

[ktdommer]

Son did 9 months of IV Rocephin through PICC. Most symptoms cleared. Took him from bed bound to back to High school. Psych issues cleared. He did an aggressive oral treatment with supplements at the same time. Got off too soon. Psych issues and fatigue slowly came back. Wish he would go back on but he refuses at 19. He is doing IVIG with treatment for viruses, Lyme, babesia and bartonella. Would like him to get a port and be ready to commit to a year or more if needed.

I would recommend it, just don't end too soon. Now we would treat a bit differently though with IV meds that would be I rotated and hit Bart. Can't remember names doc said. New doc trained with Dr. H out east.

[NancyD]

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??

 

Son did 9 months of IV Rocephin through PICC. Most symptoms cleared. Took him from bed bound to back to High school. Psych issues cleared. He did an aggressive oral treatment with supplements at the same time. Got off too soon. Psych issues and fatigue slowly came back. Wish he would go back on but he refuses at 19. He is doing IVIG with treatment for viruses, Lyme, babesia and bartonella. Would like him to get a port and be ready to commit to a year or more if needed.

I would recommend it, just don't end too soon. Now we would treat a bit differently though with IV meds that would be I rotated and hit Bart. Can't remember names doc said. New doc trained with Dr. H out east.

[PowPow]

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!

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.

Edited June 23, 2014 by powpow

[ktdommer]

Nancy: we have been extremely fortunate with insurance covering IV all 9 months and IVIG.

What else is your daughter taking orally for Lyme? Is doc ILADS?

My son is a bit older but such a hard age to be sick.

Has your daughter filed for disability? I would like to talk to a mom going down this path.

[NancyD]

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

 

Nancy: we have been extremely fortunate with insurance covering IV all 9 months and IVIG.

What else is your daughter taking orally for Lyme? Is doc ILADS?

My son is a bit older but such a hard age to be sick.

Has your daughter filed for disability? I would like to talk to a mom going down this path.

[T_Anna]

Any thoughts about trying LDN?

 

DS16 has been doing well on Namenda and LDN after his big breakthrough on CBD Hemp Oil.

 

T.Anna

[NancyD]

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.

 

Any thoughts about trying LDN?

 

DS16 has been doing well on Namenda and LDN after his big breakthrough on CBD Hemp Oil.

 

T.Anna

[T_Anna]

NancyD, I read that ppl with high dopamine don't do well with CBD oil.

 

T.anns

[ktdommer]

Nancy: Sounds like your daughter is in good hands with treatment.

IV was covered under Lyme diagnosis and approved after one initial denial. IVIG was not approved for Lyme, but when PANS diagnosis came in it was approved after a peer to peer phone call and labs. Not sure how hard the docs had to fight to get it. Two subclasses were low.

I had hoped my son would not need disability and am still somewhat hopeful that he won't but it is a situation where it can take years to get approved. I am always trying to make sure I do everything in my power to help him so I don't have any regrets later. That thinking sort of played into my decision to start with an attorney and have my 18 year old son at the time file for disability. The worst case would be he would have to drop it. The first denial came before all docs even got their paperwork submitted. In my state there is another hoop to jump through so an appeal has been filed. Should know in about 6 months from appeal. Then we assume that will be denied since it is Lyme and he is young. At that point the second appeal will be entered and it will take about a year to have an appointment before the judge.

I searched for a good attorney who will file for free. She has a clerk that keeps up with collecting of paperwork etc...

My son hasn't worked a day towards social security so has filed for SSI.

I'm very concerned about his future. His mental health issues make everything Lyme worse! Boys and chronic illness at age 19 don't mix!

There were some helpful people on LymeNet who have gone through disability with their children.

[NancyD]

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.

 

Nancy: Sounds like your daughter is in good hands with treatment.

IV was covered under Lyme diagnosis and approved after one initial denial. IVIG was not approved for Lyme, but when PANS diagnosis came in it was approved after a peer to peer phone call and labs. Not sure how hard the docs had to fight to get it. Two subclasses were low.

I had hoped my son would not need disability and am still somewhat hopeful that he won't but it is a situation where it can take years to get approved. I am always trying to make sure I do everything in my power to help him so I don't have any regrets later. That thinking sort of played into my decision to start with an attorney and have my 18 year old son at the time file for disability. The worst case would be he would have to drop it. The first denial came before all docs even got their paperwork submitted. In my state there is another hoop to jump through so an appeal has been filed. Should know in about 6 months from appeal. Then we assume that will be denied since it is Lyme and he is young. At that point the second appeal will be entered and it will take about a year to have an appointment before the judge.

I searched for a good attorney who will file for free. She has a clerk that keeps up with collecting of paperwork etc...

My son hasn't worked a day towards social security so has filed for SSI.

I'm very concerned about his future. His mental health issues make everything Lyme worse! Boys and chronic illness at age 19 don't mix!

There were some helpful people on LymeNet who have gone through disability with their children.

[trintiybella]

What exactly is SSI? Does it help pay your medical insurance, doctor bills? Does it help house you later on in life???? I spoke to social security yesterday and there is so much to learn about this process and very confusing. They did tell me that "disability" insurance is for adults and "SSI" is for children, but then when I called back, another agent said that was wrong. And what about medicaid?? Is this the same as SSI? Thanks