sf_mom

With sleep my cape is on and I'm ready to battle the TBI!!! It will be interesting to see what our Dr. determines next Wednesday for him. Push through or pull back and rotate antibiotics. HERXS can be rough, last a long time.... he too does not show any signs of being physically ill. Anyway... Hopefully I didn't scare anyone away from treating. They really do emerge 'at some point' better. That has been our experience with older DS.... much, much, much better than he has ever been. -Wendy

Well I can surely relate Pandas, Pandas, Pandas... then Lyme and my own fears. We're tired here and I too can be brought to my knees in prayer with this disease. I am sure everyone can appreciate this story... herx'ing at its finest. My younger son is doing sooooooooo horrible right now that just about anything will set him off into a rage. Twin sister looks at him, twin sister talks to him... rage. He has to win the race, first in the car, nobody can touch the lego's... rage. He has totally regressed with ALL potty training issues suddenly. You get the picture. It been five weeks 'what the heck'. This herx is not resolving its building!!! Anyway, tonight I decide to get all the kids into the hot tub. Kill time and relax everyone before bed. Younger DS goes into a rage because we all get in before him. Now he is demanding we all get out. I mean my gosh, there is an order to things right? Twenty minutes back and forth refusing to put his swim suit on until we are all standing out in the cold air in the right spot with our feet on the ground. He is three and has no concept of fighting back the OCD so we all comply. Finally he settles from the rage and happily gets into the hot tub as we all follow. Older PANDAS/Lyme son asks 'what the heck is wrong with him'. I explain it is the antibiotic change. Older DS then turns to younger DS and puts his arm around him and explains the notion of a herx. Comforting his younger brother and telling him we all understand..... and it will get better. I sure hope he is right because when you are in the thick of it, it can surely crumble your confidence. At these times, you really do rethink every treatment option and antibiotic combo ever invented. I am grateful my older DS is doing well 'knock on every piece of wood I can find', I am grateful my younger DD 'knock again on every piece of wood I can find', I am grateful I am feeling better, I am grateful for the internet, I am grateful for this forum, I am grateful we have hope, I grateful for all my new found friends that understand my life........ BUT THIS IS NOT EASY.

You might want to check out the recent thread on the Lyme Forum about this topic/herx responses. http://www.latitudes.org/forums/index.php?showtopic=13513 As you know many with Lyme/Pandas have had hdIVIG and for some it has helped and for some it made things worse.

There is an entire family that travels from Australia for Lyme treatment by our Dr. I am sorry I do not know where their specific Lyme originated. So sorry to hear of daughter tragic illness.... Wishing you all the best in figuring this out for her.

LLM: Hopefully you read my comments regarding older DS. Jan 1st no TICS. Jan. 2nd antibiotic rotation and slowly a coughing TIC et al developed. We are now 18/19 weeks into this rotation and things have almost resolved. It can really shatter ones confidence in the process to see these symptoms return after soooooooooo long of treatment. BUT again, there has been a shift in our overall baseline upwards over this exhaustive period. We are so close but yet so far away... From my perspective 4 weeks, 7 weeks, 18/19s weeks, 6 month herx's..... It is a long battle with the microbe. AND, herx's truly do last that long unfortunately. Right now we are in the middle of a 5 week herx with our younger son. Yes, the rages started right around the 48/72 hour after rotation and have built in frequency to almost a daily event. The OCD has returned although it comes in blips. Let me just go bang my head against the wall... I'll be right back. Thankfully, we meet with the Dr. next week to help determine 'if we push through or lighten the antibiotic load' ourselves. He has one notable improvement and that is his willingness to play with an unknown child... so there is a tiny little bit of hope that we are on the right path. After two long years, I am finally feeling like I need to carve out a life while my kids get better, not when they are better. -Wendy

Oh Geez.... We are definitely 'still' paving the way for other children who will suffer in the future. I would like to share a few things I learned from my Dr. visit last week. As you know.... none of this is written down in article so please take as tidbits of information from one Dr.'s office. AND, we all know each Dr. throughout the PANDAS and Lyme world have difference of opinions. I was asking about relapsing post antibiotic treatment and if it was true that most people relapse with neuropsych symptoms. Dr. G, Dr. H's associate said they believe it is true 'no study' proving it as fact. Apparently, Lyme likes to hide on a specific cell (forgot the name) in the central nervous system and it is the vehicle for which it hitches a ride and crosses over into the brain. Lyme loves the soft tissue of the brain. They don't know if they can fully eradicate (some Dr's disagree) the bacteria and it is their job to get the bacterial load down and the immune system functioning properly enough to handle when/if it reasserts itself. Again, you can carry Lyme a symptomatically for years. Children that present with neuropsych symptoms have probably been suffering for a very long time or are congenital lyme. They see neuropsych symptoms as the only presenting symptom in children often. They do have a very, very high success rate with children and anticipate full recover for most. Our body is filled with thousands of bacteria and viruses and a few are the predominate offenders.... Lyme being one of them. Dr. H said they truly know nothing about how or why IVIG may or may not help an individual especially at high doses. He was willing to address the issue of hdIVIG with his associates at ILADS. Again, further research needs to be performed. I often think about how people got their kids well 150 years ago when there were no formal studies. Basically, it was a bunch of parents sitting around a camp fire sharing anecdotal information after a lot of trail and error. Welcome to our world and shared information. I know for a fact it is the shared experience that has gotten my children better and not any one single Dr. (although very helpful). I have also learned throughout this journey that we have to trust our judgement as parents over anything a Dr. says until this is figured out. OF COURSE minus the notion of the HERX.... which makes things terribly difficult and confusing to know what is and isn't working. I can only give your our experience but as each herx passed (sometimes months of increased symptoms) and new and better child has emerged. However, the process is still rough even though I feel like a veteran of the herx. My younger non PANDAS only Lyme/Babesia/Bartonella/HHV6/Coxsackies... is suffering from a herx as we speak. I do get glimpses of a normal child and intuitively I know its helping. It is a tough, tough road and there is no easy fix to something that is so rooted in their bodies/brain. Minimally, it is a two year horizon to get your child well. So, as much as I'd like to be long gone from this forum... I am still here almost two years later with 2 more children and one adult chronically sick from when I first arrived.

I am so sorry for your struggles and increase in OCD. You are right about the rifampin is one antibiotic you do not want to pulse regularly. We did have an adverse reaction to rifampin and had a high fever 103+ with other symptoms that were flu like for 5 days..... LLMD said it probably started out as a herx on day 30 post antibiotic rotation but evolved into something much worse. Recently posted about it on forum. Wishing you fortitude while attempting to lead a normal life that includes a possible vacation.

Yes, Yes, Yes.... The waves are probably reflective of how he is infected. Bartonella and Babesia have very short growth cycles of a week or less. Where Lyme is typically days 28 to 34 growth cycle. If there is multiple infections you would have multiple cycles and initially it may be hard to pick up on cycles. As they improve there are less infections/bacterial load and it gets a little easier to tell cycles. My son is also always a little more symptomatic at dinner/bed time. I got to thinking about the night time worsening of symptoms.... Typically when I have a cold my symptoms are much worse early evening. This is what I found out about why colds/flus are worse at night.... and perhaps it applies to chronic infection as well. "The main reason for cold and flu symptoms to worsen at night is due to cortisol levels in your body. Cortisol is a hormone produced by the adrenal gland. It works on a 24 hour cycle where a person's highest level of cortisol is during the day- and lessens as the day ends. When your body has its highest level of cortisol (during the day) it actually effects T-cell growth, preventing the immune system to work at its full potential. At night, cortisol levels drop, allowing the immune system to kick in. Believe it or not, you actually feel slightly worse when your immune system is hard at work. (ie. congestion is worse- this is because your body is actually breaking up the mucus, causing a worse sensation. The same applies to a worse cough, stuffier nose, etc.)" -Wendy

You could give her a 48 hour break to see if there is improvement. Many have been advised to do this that are Dr. J patients. Some have even gone as long as three weeks 'this would make me a little nervous due to potential rate of relapse' without the direction of Dr. J. If she improves even slightly you can have confidence that this is a herx response. Then you might consider a 'lessor' more tolerable treatment regime recommended by Dr. J. Like no Tindamax and maybe just Bactrim/Azithro or Vanco and one other antibiotic and adding one back in at a time. Or, you can decide to push forward but it might be a very long time for a reprieve.... Again, it was a 12 week process when we first started Lyme treatment for older DS. He was a lot, lot worse and had many symptoms that were present during sudden on-set. For others the 'herx' has been longer. We also picked up a new symptom from Jan. 2nd antibiotic rotation with older DS that has still not resolved 18/19 weeks later 'much improved but not gone'. It is very scary to watch these set backs. Big hugs again. -Wendy

I'd say herx for sure!!!! Plus surgeries can make Lyme worse and is often the 'tipping point' for many post surgery. Not that you didn't have symptoms before. One women I spoke with in the lobby of a our Dr.'s office.. Her Lyme was kicked off by a broken nose, then surgery to fix. Had increasing Fibro 'like' symptoms post two events. Gave her steroid shots in her spine for Fibro and then she just spiraled down from there. Had to beg to check for Lyme since she lives in Texas. Of course, she was positive to the shock of her Dr.'s and then traveled to Northern CA for treatment. Two years later she is successfully being treated and doing a 1000 times better. As for symptoms, they truly migrate and just because your legs didn't hurt this time around.... It doesn't mean it won't happen in the future. Shae's CD57 is low. She is very sick. You will have a long battle ahead for both of you.... Find a wonderful Dr. who will hold your hand through this journey. I am excited to hear about your upcoming appointment in June with the Dr. in Iowa. I think you are still intending to keep, correct? I know you didn't come back positive on Labcorp but with the low CD57s likely a co-infection is involved. 80% have at least one co-infection so more likely at least one and the HHV6 has also got to be an issue. -Wendy

I was band 18, band 34 and band 41 positive and IND for band 31. We did proceeded with confirmatory testing of band 31 'to be extra sure and clarify results'..... I was also positive for band 31 once we ran the test. You have several Lyme specific bands present and could either proceed with further confirmatory testing or proceed with treatment and confirm with treatment response. BUT, I'd also say with your low CD57 more likely Lyme then not. Have you tested for co-infection yet? Sometimes those are predominant 'positive' making overall diagnoses easier. Your results do not shock me at all... and what I expected. As you know, we probably had similar symptoms with Fibro 'like' on-set. Treatment has been very worth the herx response as I'm feeling better 'at times' then I have in years and that keeps me motivated. I've seen resolution in brain fog, urinary urgency/frequency, hair loss has stopped, I now sleep through the night (didn't for almost 8 years), fatigue/joint pain is much, much better, etc. The joint pain/fatigue/headaches/mood/swollen glands still come and go with herx's. I am also positive for mycoplasma and 3 viruses which I believe are part of the Fibro 'like' on-set. Wishing you all the best with treatment.

I do believe its a herx....'I know, I know' its counter intuitive but I think you might need to lighten load of antibiotics instead of increasing or switching to give her a break. She is worse due to all the changes made in that last two months and especially with the Vancomycin added last week. You can suspend antibiotics for 48 hours to see if she improves. If she does then you need to make a decision about a tolerable herx level or plowing through..... This can go on for months. Trust me your experience is no different and unfortunately there is not a lot written about neuropysch systems and herxheimer's. She is on a lot and could probably be fine with a little less. For example: Our younger DS started Rifampin on March 29th and within two days rages were back. Since then rages have picked up tremendously are almost a daily occurrence. He had previously been OCD free for a very long time and we are now seeing blips of it where a specific person can't look at him or talk to him without him coming unglued. Just yesterday I had put on and take off his swimming bubble several times 'just me' and then he finally had to switched to his sisters pink bubble to get him satisfied. The OCD, rages and rashes are his main symptoms no physical complaints either. The worsening of behavior makes for a very rough family life and we limit our outings with him because its so hard to control in a public setting. Frankly, we are exhausted but we will push through. ON THE PLUS SIDE he played with unknown children at the playground this weekend for the very first time since I can remember. Previously he was too paralyzed to enjoy running around and typically just watched others play or played with his twin sister. BIG HUGS.... We've been through so many herx responses with our family you'd think it wouldn't bother me that my son is worse but it is STILL very worrisome. We see our Dr. often so that helps to give me confidence as we plow through. -Wendy

I know..... I often ask the same question. We've worked with a nutritionist that has experience in these high levels of probiotics. She has worked with many chronically sick individuals. Was chronically sick herself for over 10 years and has been in remission for 16 years. A lot of this felt like blind faith/hand holding originally but its been working so I tend to believe more than disbelieve everything she has directed us on. Her position is about 50% of the probiotics gets wiped out by antibiotic use alone. The gut is weak due to illness so you've got a lot of catching up to do. She is not in favor of antibiotics use at all and feels you can achieve health by repairing gut with probiotics, detoxifying the body and monitoring PHs. However, this process can take over two years or more depending on level of probiotic to see results. Many others are on lesser degree of probiotic than our kids. My kids tolerate it well and will take it. We will eventually wind down from this amount because it will be TOO MUCH and have adverse effects when the gut is better. I believe the monitoring of PH's via food intake/alkaline water has a similar effect of better gut flora. Its just a hard diet to follow for a child. No diary, no sugar, no red meat, no eggs, mostly green diet, etc. The concepts are very interesting in the books I highlighted and worth the read. -Wendy

Bill: You definitely made me laugh with the scrubbed surgeon hands.... We also had that problem too. DS would wash his hands several time prior to touching his baby blanket because he didn't want to contaminate it. Yes from the bathroom to jumping in bed with his hands raised like a surgeon's. Thankfully, its a distant memory. My vote is for all of it working... time, antibiotics, SSRIs!!! -Wendy

Hope this helps. Probiotics play an essential role in the intestinal mucosa barrier, including modulating intestinal immune response and competitively inhibiting the adhesion of pathogenic bacteria to the epithelial wall of the intestine. Intestinal epithelium plays an important role in innate immunity. When stimulated by cytokines, such as TNF-a, the intestinal epithelia release pro-inflammatory cytokines, including IL-8 and IL-10. However, in some gastrointestinal diseases, such as inflammatory bowel diseases (IBD) and acute gastroenteritis, cytokines are activated and produce excessive inflammatory products negatively affecting the immunological capacity of the epithelial cells. Resident Bifidobacterium and Lactobacillus actively inhibit the pro-inflammatory response by inhibiting the secretion of IL-8, thereby suggesting the use of probiotics in the management of intestinal diseases.5 This has vast applications for ‘quenching’ a potentially out-of-control immune system seen in autoimmune diseases and disorders of inflammation. -Wendy

I am a huge believe that HD-Probiotics ADD to the successful treatment of PANDAS and Chronic Infections. We give our older DS 1.5 trillion units per day '11 different strains' plus prebiotic 'Epicor' for yeast and a mix of anti-fungals. Our younger 3 year old twins take approximately a trillion probiotic units per day ... all in conjunction with heavy detox. Our goal is repair gut and to normalize PH Balances to more alkaline body verses acidic. We've been doing this for approximately 1 1/2 years with great results. PH are finally close to normalizing in older DS. It takes time to normalize PHs since chronic infection thrive in acidic environment and my children have been impacted since birth. Here is a great article on probiotics... posted before. http://markbrudnak.com/Articles/probiotics_autoimmune_anti.htm Another great source of what each strain helps to combat. http://www.probiotic.org/index.htm There are a couple good books available on body PH: 'Alkalize or Die: Superior Health Through Proper Alkaline-Acid Balance', 'The PH Miracle'.... These books address PH Balance via what we eat and not via detox method (our approach) but the concept is the same. -Wendy

Jodie... As you know, I've been detox, detox, detox, detox and mega detox person but you've just added to my level of understanding. Thanks for posting on drainage. I would also like to have a good discussion on PH Balances here in the near future Acidic/Alkaline bodies. I believe Dr. Corson also ascribes to this philosophy due to her recommendation of specific waters and diets. Anyway... when time allows. My own experience with Tindamax is truly a love/hate relationship. They are currently pulsing treatment with me... 3 weeks on and 3 weeks off. I just started again and within 8 hours I was herxing horribly. I actually had to lock myself in our bedroom closet because I was so noise sensitive 'YES I WAS HIDING FROM MY KIDS'. The next morning I woke up with raging headaches. I am other than myself for the first couple of days but then I trend better and better. No fevers or malaise just headaches of all types, moody, noise sensitive.... very much like PMS symptoms for me. Tindamax is also an anti-parasitic aspects and will help treat Babesia if its an issue and why I eventually feel better on it then off. -Wendy

Great article.. thanks for finding. -Wendy

As you know, there are several that have found that the repeat hdIVIG were not helpful. These parents were forced to stop treatments because the child was doing so 'horribly' (they also had Lyme/Pandas)..... The good news is these children did trend better and better the further they got out from prior treatments. Rather than more... perhaps waiting it out, truly waiting it out a good six months. Again, it is important to understand when something isn't working for your child and be flexible enough to change course. I am sure anyone of these parents would be happy to speak with you privately to give you confidence in a new path if needed. I would work on heavy, heavy detox with her over the next two weeks to see if it helps at all. Is it possible you could get her to drink a cup of bentonite clay throughout the day? Or, load her up on bentonite pills? I would also recommend Calm Forte prior to bed, 500 m.g. of Tryptophan, Kids Calm next to bed warm to drink throughout night or give when she wakes and nightly benadryl 'need to get histamine levels lowered'. I suspect she'll sleep better but might take up to two weeks for everything start helping. I am sorry I don't have any good suggestions for a Psychiatrist. We have a wonderful one in our area that totally understands PANDAS but is not local to you.

Probably Livedo Reticularis - Swelling of medium blood veins. You can find plenty of photos on line. http://en.wikipedia.org/wiki/Livedo_reticularis My twins have suffered from it fairly severely... is present at all times, over entire body up to cheeks. They have congenital LYME/Babesia/Bartonella/HHV6/Coxsackies. It is improving with treatment. Our Dr. does believe it is related to Bartonella. There can be many reasons for its appearance. Suspect its a reaction to IVIG. I would only worry if it does not resolve along with other symptoms post IVIG. -Wendy

It definitely sounds like Babesia to me. Was slight fever in a.m. or p.m.? I believe Bartonella is a.m. and Babesia is early evening. Watch for a slight elevation again today. The rib pain was awful for me... it did not come and go but took months to feel better. If you have Oil of Oregano, break open capsule and put in warm water..... have her gargle, it should take care of mouth sore fairly quickly. -Wendy

Rib pain 'like the skin if tearing from rib' is Babesia. I had this symptom prior to diagnoses between pregnancies. I thought I had a stomach hernia or something. Met another patient in lobby at LLMD that had similar symptom with Babesia. -Wendy

I am on Dorxy 'Doxy' and Clindomycin currently for Babesia treatment. WBC typically drop initially when treating Lyme especially if Ehrlichiosis is involved 'worse before better'. There will be cross over effect for co-infections with antibiotics. He actually seems very sick and will need to get his bacterial load to come down and through some of the major herx'ing before hitting him up too heavy. Definitely address platelet drop with LLMD.

I'd call first thing in the morning to discuss with LLMD. Doxy just to be safe until you speak with them if you have extra. I had conversation with the Dr. about rate of Lyme of in the hills... he said stay out of the hills/tall grass in Northern CA. I believe its fairly inexpensive to test via Igenex but again Dr. might just recommend antibiotics. How scary. -Wendy

Band 45 often means Ehrlichiosis is involved too. Its a co-infection. Once you settle on LLMD you'll need to investigate those further. She does appear to be immune healthy... Lots and lots of antibodies. I sure hope that correlates into her ability to fight LD well. -Wendy