What in the heck is going on?

[Dedee]

Many of you may remember that my daughter (who just turned 9), just recently started treatment for lyme. She has been under treatment for positive myco p titers for 18 months and has had 2 IVIG's. Her lyme treatment started August 1st. She started having a bad herx reaction about a week to 10 days into the treatment. I started doing all the usual detox therapy. She practically lived in an epsom salt bath. Lots of lemon water. I was able to get milk thistle in sometimes. Unfortunately, when she flares, one of her issues is refusal to take medications so it was very difficult to get in many meds but very consistant with Ibuprofen, milk thistle, and lots of fluids. So after two weeks of horrible herxing with terrible rages, ocd and mood swings, I finally called the LLMD. She told me to stop the antibiotic that we had added until things calmed down and then start it back very slowly beginnig with one a day and working up to two. Problem is, she has been off of this antibiotic for about two and a half weeks now and the behavior is only mildly better. The physical symptoms seem to be better but the rages, ODD, OCD and so forth are still through the roof.

 

I have started to consider putting her on an SSRI. She already takes lamictal but it doesn't help any with her OCD. I know this may only be a temporary thing but over the last two years it's been a constant state of better then worse. I just think that the SSRI might help bring a little calm to the ever brewing storm. My oldest son took an SSRI when he was going through the worst part of his PANDAS symptoms and we were able to wean him off after a few years. It really seemed to help him. My husband isn't very keen on the idea, but he isn't the one who has to deal with most of the rages.

 

Please tell me if you think I am jumping the gun......I am soooo tired of fighting this thing. It's exhausting! I always feel like I'm trying to justify things to my husband too. Why they need to go to this doctor, why they should take that supplement.....Why can't he just trust my judgement if he isn't going to get involved himself? I'm sorry to vent all over the place here. We had a hard morning trying to get to school and I'm starting to get really discouraged. I guess I just need to pull myself up and stop with the pity party.....Thanks for listening....

 

Dedee

[SSS]

Dedee, I can very much relate. To all of it.

If you think it will help, try it.

Hang in there------

S

[LNN]

I'm not against an SSRI - totally get this little concept of coping while enduring a herx. Often, the inflammation takes way longer to resolve than other things. If you decide it's what you need to do to function as a family, do it.

 

The only other idea I have is to try 5-HTP or tryptophan first. I've found two schools of thought on using things to improve your seratonin picture. The SSRI school says that you can increase seratonin by making it stay in the synapses longer, slowing down the re-uptake time. The supplement school says if you don't have enough seratonin in the system, slowing down the reuptake rate doesn't do the trick.

 

A mom sent me this fascinating link on the two concepts http://www.neuroassist.com/01%20Depression%20Johns%20Hopkins%20with%20cover.pdf. It talks about dopamine and anxiety/depression but the same theory holds true for compulsions/seratonin. The author says that if you take a reuptake inhibitor and cause the neurotransmitter to stay in the synapse, the neurotransmitter is degraded by enzymes and some of your "fuel" is used up. Eventually, you deplete your levels of neurotransmitters and the inhibitor you're using "poops out" or stops working at that dosage. You need to up the dose to get the former result. But eventually, your resources become tapped out and the drug stops working entirely. So patients end up having to switch drugs.

 

This author says that instead, you can increase your intake of amino acids - either l-tyrosine for dopamine (which helps DS immensely) or 5-HTP or tryptophan for seratonin (tryptophan helped DD a lot in a dark time before we straightened out methylation). Then you don't need a reuptake inhibitor. He also talks about needing to support methylation (tho he says to just use folate but if you have MTHFR, you'll need methylfolate).

 

This is a chapter of a book from Johns Hopkins. The author was a researched at Univ of Minnesota but has left since its publication.

 

Like I said, not discouraging the SSRI. The one advantage I saw in using tryptophan was that you don't need 6 weeks to taper up and down. We built up and tapered down much faster than what you'd do with an SSRI. But whichever you chose, you're only doing what you need to.

 

As for your DH, it's a double edged sword, but at least he cares enough to be involved and ask questions. You're in my thoughts.

Edited September 11, 2012 by LLM

[nicklemama]

Dedee- I am not an expert. I am only offering this information so you can do a little research and make your own judgment. I took DS to see a biomed doc earlier this year. He did an organic acids test (OATs) and we found out our DS had barely detectible levels of tryptophan. Tryptophan is metabolized from the foods you eat into seratonin. Seratonin is used by the body to make melatonin, among other things.

 

I read some interesting things when I googled undermethylators and overmethylators. You can also google and look at methylation cycle charts and melatonin synthesis charts and see what I'm saying.

 

I read just in the last week about SSRI's and basically its echoing what LLM is saying about using SSRI's and it staying in the synapses.

 

You might give thought to trying a tryptophan supplement or 5-HTP. Just food for thought.

 

I forgot to disclose that DS was put on an SSRI for his anger, rage, anxiety, etc... before we knew about PANDAS. It was a disaster for him. However, he was given a regular starting dose and it was upped before it had a chance to work. Many on here seem to have had positive SSRI experiences with low and slow.

Edited September 11, 2012 by nicklemama

[sf_mom]

I definitely have friends that have gone the SSRI route with success while treating chronic infection. However, we too have leaned towards using Tryptophan, Gaba, Kavinace, etc. You might also consider some natural anti-inflammatories as well.

 

I am also wondering how aggressively you are treating for KPU currently. Heavy metal dumping can occur as a result of treatment and cause inflammation hence increase in symptoms. If you are treating KPU you need to have something to mop up the metals like chlorella. The metals can then also cause yeast and fungus to grow. A circular rut. If you are treating watch for white tongue for yeast and black tongue for fungus. I only know this from first hand experience with younger DS and treating KPU.

[PANDASmcnuggetsw/fry/coke]

Deedee,

A cyber hug for you for all you are going through {{{{{{ Deedee}}}}}}! Not much else to add. We only briefly tried 5htp and I can't remember anything from it. Tryptophan, our dd needed a lot b/c she metabolized it so quickly. We used it mostly as a sleep aid. Not a great help for us, but ymmmv and your daughter is probably smaller and it might help a lot more.

 

After 2 IVIGs and steroids and 2 years and 4 months of abx, an MRI and removal of gluten, casien, eggs and 3 other foods from her diet,tons oftesting,we are finally going to try the SSRI. She is fatigued from all of this and so am I. We don't have the rages,so I can't imagine how much more that would add to the mix.

 

Whatever you decide, my hope is that your dd gets relief soon and you have peace about the decsision!

[Mary M]

Dedee-I know the question in this post was about SSRIs but I wanted to share that I have a friend whose son has lyme. He is in his late 20s and he has verbalized that the treatment for his lyme was worse than the dysfunction from the lyme. He opted to forego further lyme treatment due to the herxing. I'm not at all suggesting foregoing the treatment but I am simply sharing that even for grown ups, who had led perfectly normal lives prior to a lyme dx, the process toward healing can be quite painful and difficult. For this young man, so painful that he gave up and has chosen to live with lyme. Finding the right balance of treatment meds is the ultimate challenge. I'm so sorry things are so challenging right now...

Mary

from Michigan

[Dedee]

Thank you all for your suggestions and your support. I am quite weary. Last night was difficult. My daughter has friends who live next door and they are sick. She spent the entire evening worrying about whether she might get sick. She kept taking her temperature and asking me over and over if I thought she would get sick. Then she started pounding on the couch and crying saying how she was so angry and she didn't understand what she was angry about. Finally, I got her to take a warm bath (with epsom salt)and it helped to calm her down. I was barely able to get her night time medicine in at all. She only took two out of her six needed pills and fell to sleep in the middle of taking them. I decided to forgo the rest and let her stay asleep. Had another hard morning getting her to school. Lots of OCD with taking her medicine and rituals with getting dressed. I am trying to put our ERP training into place but it is so hard on a deadline of getting everyone ready and out the door. Uggg..... I suppose this could all be because of the illness that she has been exposed to (and will probably eventually get), or still the effects of the herxing from the extra antibiotics.

 

She is still on the biaxin which she has been on for a long time, but we stopped the Minocycline. I'm not sure when I should start it back. LLMD said to give her time to level out then start it back slowly. That was over two weeks ago though. Not sure when the "leveling out" is supposed to occur.

 

The good news is that our company is supposed to be changing insurance plans at the end of this year. Rumor has it we are getting a much better plan. I can only pray that is true. If I can get IVIG paid for we would be headed in that direction again in a minute. Keeping my fingers crossed.

 

Dedee

[sf_mom]

Sorry to read you had another tough day. It could be a new exposure, it could be a herx or it could be you don't have enough coverage for current infections. Unfortunately, it will be trail and error with your treating Dr. until you figure it out. However, we have experienced horrible rages as a result of a herx response along with increase in OCD for several weeks at a time (sometime months). I know, I know.... its scary but it does settle and baseline eventually improves.

 

Since I recommended natural anti-inflammatories yesterday, I thought I'd post a link to good one that crosses BBB.

 

http://www.ageofautism.com/2009/08/enhansa-curcumin-supplement-helping-families-treating-autism.html

Edited September 12, 2012 by SF Mom

[Dedee]

Thanks so much for the site. I do believe she needs more anti-inflammatory. I did increase her ibuprofen last night after listening to Dr. T's interview and realizing that I wasn't giving her enough. I will go with the natural's next. Thanks again.

 

Dedee

[LNN]

Timely post, SFMom. Our LLMD has been working with Lee Silsby on an Enhansa trial with his lyme patients and is going to present his findings at ILADS in Oct. He's seen really positive things. I've tried a Xymogen product with tumeric that didn't do much. But supposedly Enhansa has been pretty effective at knocking down inflammation.

 

My DD, who does not have lyme and is doing really well in many ways, has been struggling with some sort of allergy (DH is struggling too). LLMD said her nasal passages are nearly swollen shut. No mucus, just inflammation. Zyrtec and quercetin only help a little. But she can't sleep at night - can't breathe. So we're going to start a trial of Enhansa this weekend (free samples - yeah!). But we were warned that if there's anything low-level - like yeast - the Enhansa will go after it and could cause a flair for a bit. So I'm waiting until the weekend just to be cautious. In the meantime, it's good 'ol motrin to the rescue.

 

Dee - not sure where you're at exhaustion-wise or funds-wise. But three tests we found to be very helpful when DS hit a detox/herx quagmire were: MTHFR, HLA-DR and KPU/pyroluria. You know all about MTHFR and KPU. HLA-DR is a gene that effects your ability to detox and regulate immune response. 25% of the population carries a mutation that makes it hard for them to detox. KPU also effects your body's ability to handle infection and control the immune response. So a few things to add to your list for your next LLMD appt.

 

Here's info on HLA-DR: http://www.survivingmold.com/diagnosis/lab-tests Shoemaker is the mold guru but some of his tests were helpful in measuring DS's level of inflammation. Like you, we backed down on treatment and loaded up on anti-inflammatories. Took about 3 weeks from the time we stopped tindamax until things calmed down. But...as Wendy said, we then saw that we'd taken a big step forward and had a new, better, baseline.

 

I know it's really depressing to be in your spot. Lots of swearing under your breath and doubting whether you have the strength to keep doing this. You feel like Alice who just slid down the rabbit hole. It does get better...eventually.

Edited September 13, 2012 by LLM

[Dedee]

Actually, we already are using Enhansa. Have been using it for about 4 months. We aren't up to the full dose yet. They want her to take 5 per day eventually. She is currently up to 3 per day. We are lucky that our Integrative Medicine practitioner called in a prescription and our insurance is paying for it. Only costs us a $10 copay. She has tested positive for KPU and is under treatment but I am only treating conservatevly right now because of her symptoms. She had gotten much better at the beginning of treatment but then started to regress so I have backed off on the treatment some. Hard to tell what is causing the regression sometimes. I tend to think it's the lyme treatment though. I'm really considering just starting back the minocycline at a low dose this week-end. Don't really know what difference it makes to stop it if it hasn't made any difference in this flair. What do you think?

 

Dedee