ShaesMom
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Posts posted by ShaesMom
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Dd11 scheduled for second IVIG in one week. First IVIG 7 weeks ago yielded no result. (her symptoms are all neuro, all OCD) LLMD prescribing IVIG wants longer dose, 5 days of hdIVIG, as opposed to 2 days she received the first time. I am skeptical...about his knowledge of the use for lyme even...she only had slightly low IgG levels, so this was speculative treatment in the first place. Anyone have any experience/success with this? She has been aggressively treated for 2 years now, testing for lyme and babesia currently, had a CD57 of 50 2 months ago. Currently on Augmentin XR 2000mg 2 x a day, zithromycin, mepron, nystatin, tindamax, and lots of herbals. She has also tried IV rocephin, but only for one month, after no results docs wanted to stop. She currently cannot attend school, all contamination fears about school germs contaminating the home, and unfortunately now the home is mostly contaminated too.
Any input appreciated!
So when you say longer dose, is LLMD giving the total same amount as before only over a five day period or giving the same daily dose for five days instead of two? I have never heard of anyone doing five straight days of IVIG-high dose or normal dose-and we are a monthly IVIG family. I would be concerned my dd would have a terrible reaction. Will it be done in the hospital?
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Parasites and the full moon are often a big topic on Lymenet.
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Ok - no need to panic. This post won't apply to most of you. But I came across this today and had to pass along.
I've been using quercetin to get on top of DDs inflammation (allergies - very inflammed nasal passages). She's also complaining of her body hurting. No specific muscle pain - just a flu-like all over body pain. So there's this researcher - Theo Theohardies at Tufts http://www.mastcellmaster.com/research.html who's a mast cell guru. Mast cells release histamine and many of DDs issues involve histamine (allergies, nausea/GERD, mood/anxiety issues, especially when sick or facing lots of oxidative stress). This doctor is involved with a company that sells a supplement that contains quercetin and luteolin - both of which I keep stumbling onto as promising topics. The product is called NeuroProtek http://www.algonot.com/neuroprotek.php
I haven't decided on the merits of the product but one of the features they boast about is that they use quercetin derived from the saphora plant whereas most quercetin is derived from Fava beans. The reason they say the do this is that some people have a G6DP mutation and experience a type of anemia that can be triggered by fava beans. Anti-malarials, sulfur abx, and other things can also trigger the anemia.
Hmm...what's a G6PD mutation http://en.wikipedia.org/wiki/Glucose-6-phosphate_dehydrogenase_deficiency and http://g6pddeficiency.org/index.php
G6PD is one of many enzymes that help the body process carbohydrates and turn them into energy. G6PD also protects red blood cells from potentially harmful byproducts that can accumulate when a person takes certain medications, consums some foods or when the body is fighting an infection.
In people with G6PD deficiency, either the RBCs do not make enough G6PD or what is produced cannot properly function. Without enough G6PD to protect them, RBCs can be damaged or destroyed. Hemolytic anemia occurs when the bone marrow (the soft, spongy part of the bone that produces new blood cells) cannot compensate for this destruction by increasing its production of RBCs.
Causes of G6PD Deficiency
G6PD deficiency is passed along in genes from one or both parents to a child. The gene responsible for this deficiency is on the X chromosome.
G6PD deficiency is most common in African-American males. Many African-American females are partially G6PD deficient, meaning they can pass the gene for the deficiency to their children but their symptoms are less severe unless both X chromosomes are affected by G6PD deficiency.
People of Mediterranean heritage, including Italians, Greeks, Arabs, and Sephardic Jews, also are commonly affected. The severity of G6PD deficiency varies among these groups � it tends to be milder in African-Americans and more severe in people of Mediterranean descent. For a scientific discussion of the different strains of G6PD Deficiency, go here.
Why does G6PD deficiency occur more often in certain groups of people? It is known that Africa and the Mediterranean basin are high-risk areas for the infectious disease malaria. Researchers have found evidence that the parasite that causes this disease does not survive well in G6PD- deficient cells. So they believe that the deficiency may have developed as a protection against malaria.
Kids with G6PD deficiency typically do not show any symptoms of the disorder until their red blood cells are exposed to certain triggers, which can be:
illness, such as bacterial and viral infections
certain painkillers and fever-reducing drugs
certain antibiotics (especially those that have "sulf" in their names)
certain antimalarial drugs (especially those that have "quine" in their names)
Some kids with G6PD deficiency can tolerate the medications in small amounts; others cannot take them at all. Check with your doctor for more specific instructions. Go here for a list of medications that could pose a problem for a child with G6PD deficiency.
Other substances can be harmful to kids with this condition when consumed � or even touched � such as fava beans and naphthalene (a chemical found in mothballs and moth crystals). Mothballs can be particularly harmful if a child accidentally swallows one, so ANY contact should be avoided.
Symptoms of G6PD Deficiency
A child with G6PD deficiency who is exposed to a medication or infection that triggers the destruction of RBCs may have no visible symptoms at all. In more serious cases, a child may exhibit symptoms of anemia (also known as a hemolytic crisis), including:
paleness (in darker-skinned children paleness is sometimes best seen in the mouth, especially on the lips or tongue)
extreme tiredness
rapid heartbeat
rapid breathing or shortness of breath
jaundice, or yellowing of the skin and eyes, particularly in newborns
an enlarged spleen
dark, tea-colored urine
Now, DD is 50% Greek and there was enough on this site to make me sit up and re-read. Testing is apparently iffy (surprise surprise) and there is no treatment except to "avoid triggers". But I wanted to pass along because it could be why some are having problems with certain medications or can't seem to shake the fatigue.
FWIW - there are YouTube videos of Theoharides explaining the role of mast cells in autism and how controlling the inflammation can help. Haven't watched yet.
Don't know about the G6PD stuff but we are actually looking into Mast Cells for Shae. I'll have to watch this video. Thanks
I've ran into a couple of blogs where the Mom's and kids have both lyme (congential) and MCAS. One poor lady is really sick with the MCAS.
http://www.ticksandtrust.blogspot.com/
http://www.caringbridge.org/visit/elizabethfadling/journal/1
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Our LLMD started us off on Ceftin and then added in Azith.
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But, honestly, what is a "strep carrier?" To me that is nothing more than the fact that the person tests positive for strep, but they can't figure out where the strep is. The fact that they are contageous (people tend to get sick around them) means to me that strep is still strep, and that person may very well be having symptoms, but doesn't necesarily equate the 2 together.
Yes, I TOTALLY agree! I've had several very lively discussions with my doc about my "carrier" son. Just because he doesn't have puss on his tonsils and a fever, and his strep doesn't clear with a regular course of antibiotics, doesn't mean we should just call him a carrier and give up!! Every single swab he's EVER had is positive, so we don't need to guess where the strep is. Clearly it's in the back of his throat, and likely elsewhere too. He had "migraines" and "allergies" which I believe was strep in his sinuses. They both cleared within 2 months of starting lyme treatment. My PANDAS son had major and continuous improvement when my "carrier" son was on abx along with him. Unfortunately, we were unable to continue abx with carrier DS, due to severe stomach pains. Ever since we took "carrier" DS off abx, PANDAS DS has been struggling. And at about 6 weeks off abx, carrier DS got that peculiar stink back on his breath. Ugh. At least the headaches haven't come back (yet). So frustrating! And my family doc doesn't believe a word I'm saying because it doesn't make sense medically. Okay, done ranting... for now...
Have you considered meeting with an ENT and having carrier DS's tonsils removed?
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I think this is a really great question and one that may be debated for along time.
We are a family of four with Lyme and only one dx'd with PANS. PANS child is by far the sickest if you exclude my cancer dx. She has been dx'd with CVID, PANS, Lyme & Co & Eosinophilic Esogphagitis. Plus she has some yet clearly undefined problem with her right kidney that Dr's monitor yearly. She has had three periods where her sx's/illness was clearly more PANS and treatment of underlying infection (2 Pseudomonas & 1 Strep related) "cured" sx's. Currently, I believe her PANS is in remission. However, like ChristianMoms child, whenever she is ill her sx tend to be PANS like. No matter what is going on in her body, she always has leg pain, headaches, and mood issues that border on raging. BUT the mood issues are short lived, can generally be linked back to a trigger within four hours, and she is usually in more "control"-meaning she is able to say, I can't stop myself, leave me alone so I can calm down. So PANS like but definitely different.
DS12 had ASO titers of 1100 and Dnase in the 400's when dx'd with lyme but no PANS sx. He actually had more typical EE sx. A year after starting tx his ASO is still in the 400's I believe but he has never had raging or PANS sx.
DH has elevated Dnase but normal ASO titers. I have both normal Dnase & ASO but I recently failed a Pneumo Vax challenage and have low IgG totals, and Subclass 1 & 3; so I am headed towards a dx of CVID myself.
So everyone in our family clearly has issues with strep but only one has the severe sx associated with PANS.
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Thank you for the article - very informative. While it does discuss risks, it also acknowledges several healing benefits. So I suppose you can take away several things from this, depending on your inclinations. It was helpful, so thanks for sharing it.
You say that the supplements I mention have nothing to do with detox. Perhaps we're using the term in different ways. I view detox as everything from the point where cysteine converts to glutathione, thru the filtering processes of the kidneys and liver and to the point of excretion. Perhaps that's not the medically correct view, but that's how I'm using it.
I don't have 37 years in allied health care - or any years for that matter - and I hope I don't come across as offering medical advice or like I'm trying to sound like any sort of expert. I've studied methylation and transsulfuration to the best of my abilities and feel I understand the basics fairly well but have found it next to impossible to find a practitioner who has a better understanding than I do, even tho my understanding is far from complete. I can find docs and researchers who may know a great deal about methylation or the immune system or neurology or psychiatry or cognition or....any other facet of my child's world. But I've yet to find anyone who gets the whole picture. Some autism specialists come close, but my kids aren't autistic and most autism specialists don't know lyme. And even those rare clinicians who do touch many facets are still learning - not only from peers at conferences but from parents who live and learn the hard way. Pediatrics adds a whole other layer to the problem most lyme patients face - and those layers are already pretty complex.
So I have many gaps in my medical knowledge. And I would give what's left of my retirement account to any doctor who could pull it all together, see my kids from every facet and take over as case manager. But that person may not exist and I can't let my kids - and the entire family - suffer in the interim. So I spend time on forums sharing information, then spend countless hours sifting thru legitimate and illegitimate research, biases, theories and claims. I limp along as best I can and ultimately pick a doc or two to help along the way. Just as there's a great deal of disagreement among doctors, there will be differences of opinion on forums, with some choosing to try things another parent wouldn't be comfortable with.
When I share my experiences here, it isn't with the single goal of fighting lyme. My kids have much more going on than a single infection. They have, at various times, gone stark raving mad, hid under coffee tables, curled up into balls in tears, unreachable, lost all social skills, lost academic skills they had a month earlier, and experienced neurological challenges you don't see discussed on most lyme forums. Some of our kids do present with symptoms generally associated with autism. They have also had awesomely normal times that I cherish. This forum represents a unique subset of lyme patients and parents. As such, we end up touching on a wide spectrum of ideas and throwing a lot of spaghetti at the walls. So yes, I try my best to appreciate what each supplement does not just in terms of chronic infection but especially in terms of neurotransmitters and physical development.
Do I make mistakes? Absolutely. I think for the most part, our kids get a LOT of blood draws and do check for many things before we turn them into guinea pigs. But go search on my mea culpa posts about my screw ups. Look in my shoebox of shame - filled with bottles of things that didn't pan out, despite what a blood test suggested. Do I read about LLMDs and Pandas docs giving advice that I know to be incomplete as well? Yes. This forum sometimes serves as a feedback loop to the handful of doctors some of us end up working with. We toss ideas around, take turns digging up research, doing doctor-guided trials of various things - then talk about what worked, what didn't and then we share thoughts at our next appointments. All of us realize (I hope) that we take the info on this forum as ideas, not as strict advice or directives. For the most part, we're just moms (and a few dads) doing the best we can.
Nicely said LLM!
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Thanks to everyone who responded. Wait is end of November.
Never easy to wait. -
Just because your doctor said that your thyroid levels are "normal," does not mean that your thyroid is working optimally. Ask your doctor what your levels are - do not take "normal" as an answer.
The newest endocrinology guidelines say the TSH level should be between .25 - 2.50 according to my treating physician. And it will take a long time (as it usually does) for new guidelines to reach physicians and labs.
Our LLMD says that Lyme patients seem to feel best when the TSH is at 0.
My TSH was 8 when I started treatment 1.5 yrs ago (with Armour Thyroid). It is now .19 and I have never felt better. I no longer have the symptoms of fatigue, weight gain and hair loss. In fact, I have lost 20 lbs. in the last year.
I have a copy of the blood work. My TSH is 1.74.
Glad treatment is working and you are feeling better. Losing weight-always a big bonus!
I will look into the Biotin.
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It has been falling out for the past two months. It is getting really thin in some areas. The hair on the lower portion of my legs also isn't growing very much at all.
My thyroid tests all came back normal. I've visited with my LLMD, ID, & GP. Since the tests came back normal and none of the meds I'm on list this as a side effect-I'm getting the it is stress related answer. Any ideas?
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I do think the Metametrix report is easier to read. Genova & Metametrix are actually in the process of merging into one company.
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My LLMD uses Genova Diagnostics. Is this a good choice or is there someone else I should use? Anyone recommend any certain panel?
Thanks
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DD is not getting better. No major changes except starting school almost two weeks ago. Current LLMD is not being very helpful.
If I'm not mistaken I believe the Doctor in Colorado does the muscle testing (ART ?). Can send someone send me a PM with how to contact him and info they would like to share. Thanks
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What an awful disease!!!!!!!! I do think the tremors could be related. The GSE seems the likely source and would stop completely until you talk with LLMD on Monday. Hopefully things will settle in the same amount of time since starting... 72 hours. GSE is a cyst buster too and maybe why you are seeing such a immediate and huge response.
As for constipation. Have you treated for parasites? We had this issue with younger DS and has resolved since using digestive enzymes and treating heavily for parasites. I posted an interesting video regarding Autism and parasites and the use of MMS recently. I am not endorsing the use of MMS as it is not FDA approved. However their perspective is interesting on potential number of parasites involved in ASD causing inflammation in the intestinal track, constipation and GI issues. It might be worth watching video... I am reposting link for you. We've treated parasites with Alinia (at least six months) and MSM 'natural sulphur' which treats nematodes. It might be worth a shot treating for parasites or at least discussing with LLMD since you've had so many GI issues. As an antibiotic Alinia provide a lot of cross over treatment for other TBI infections and viruses. Our LLMD uses it frequently.
Here is the link.
I can't get the link to work. Says the content is not online.
I read an earlier post you had about the MMS and found it quite intriquing. Did you test younger DS for the parasites or did you just treat? We are headed to Cincinnati in a couple of weeks for the quarterly GI appt and I am planning on asking a lot of questions about parasites this go around.
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dont' have much time now but. . . does she have any history of migraine headaches? the weakness and numbness in hand can be migraine related. i get migraines -- our integrative MD beleives tick-borne illness related. first began when i was around 11 -- i have aura with them which entails many strange symptoms -- easiest way to describe is stroke-like.
there is some tie with magnesiium and migraines -- many people use magnesium to help try to treat. you may want to google or mention to a neurologisst. let me know if you want more info to investigare if could be that.
Large family history of migraines including in myself. She gets them after IVig. She did mention having a headache/migraine the last two days. So you are saying that the magnesium would be helpful?
The other thing we have noticed is that when she is having a tremor her fingers and hand are colder than the other hand.
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Thank you for your concern. However, after a life long battle with chronic, and by chronic I mean severe, constipation; MOM is the only laxative we have found that gives her some relief. All of her Doctor's are aware of her daily dose and have actually encouraged us to up the dosage until we find the right amount that will allow her to have a daily bowel movement. I do not really like that she has to rely on this med and prefer that she was able to go on her own. Unfortunately, whenever we back off she gets constipated again.
No need for anyone to point me in the direction of Miralax. Been down that road and she was poisoned by the polyethylene glycol-"Miralax toxicity" as it is called. Very scary experience. Not to mention that it has never been tested on nor approved for use in children or for more than a period of two weeks in adults. Lets not forget that while PEG 3350 is not antifreeze itself-they are made from the same compound. If you can't tell-Miralax is my soapbox. I HATE the stuff.
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My dd also has CVID dx but her Doctor has never checked her urine for protein. She does she a Urologist for a different reason though.
I ditto Hopeny-I would call a Urologist office.
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She woke up yesterday with a tremor in her right hand and her left hand felt weak and numb. She was also complaining of heel pain and a tummy ache. Heel pain, tremor and weakness are all new symptoms (her brother and myself do have Bart). I emailed her LLMD and got no response and their office is closed today.
The tremor was quite pronounced. I gave her an Epsom Salt bath and it stopped the tremor for a few hours. I took her to school this morning and within an hour she was in the Nurse's office with the tremor back and worse than yesterday. Brought her home and gave her another bath. The tremor was better but still there.
So I don't know if this is a herx or a new symptom. On Saturday she had three drops of GSE (down from her normal 5 due to school starting). On Sunday she had a weird episode where she was kicking her feet, rocking, clutching her pants, crying, and repeating "I need help. I can't stop." Took us about 30 minutes to calm her down and for the motions to stop. Emailed LLMD on Monday and all he suggested was drop GSE down to 1 drop for awhile.
Now this happened yesterday and today. The only other change we have made is to add the Mag Cream at bedtime. I rub a small amount on her back and her feet. I can see it causing the heel pain since it has been directly applied to her feet but the tremors? Also, she has been taking Milk of Magnesium for the last couple of years without any issues. Epsom salt baths aren't a problem either.
So I don't know if I should take her to the ER and insist they do a MRI or ride it out until Monday and see what she is like. Any thoughts, opinions, suggestions would be greatly appreciated.
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My 3 yeare old doesn't sleep well and twitches in her sleep. She took Prevacid for a year which depletes magnesium, I am suspicious that she has a definiciency but was nervous about supplements. This sounds like a good option. She has an immune issue, and unfortunately I found a bullseye rash on her last weekend so now it looks like I will have a Lyme battle with her too, the past 8 months have been battling Lyme/Pandas for my 8 year old. Hoping this time as we caught right away it will be different.
Sorry to hear about your 3 yr old. I hope you have caught it early and treatment will be easy for her.
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Thanks for this info LLM. I need to sit down and spend some quality time researching this still. I haven't forgot you either-but admittedly-I'm stumped!! PM you when I have more time.
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My own experience with Septra/Bactrim has been this:
I was put on it twice last year for a period of 14 days-this was before I knew about the lyme & co. Both times I was on it I felt absolutely horrible. Both times I stopped taking it early because it made me feel worse than I did when I was not on it. After learning about my lyme, I assumed I must have been herxing.
In December of last year I developed an abx resistant infection after surgery. Culture of bacteria came back showing that Bactrim was the drug of choice. So I reluctently took it again figuring it would also target the lyme/bart. A couple of hours after I took it I noticed my lips felt kinda weird. Made a mental note of it and went on with my day. Took the second dose at dinner time without any hesitation. The next morning I woke up and my lips were larger than Angelina Jolie's!! I was having an Anaphylactic reaction and consider myself very lucky that I even woke up that next morning.
It wasn't until the third time-months later-that I had the ANA reaction. So IMO-if your Mom instinct is telling you it may not be a herx but an allergic reaction-go with it and find a different med.
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My dd is also a little older and has no desire to take a bath any longer. So I'm trying to compensate for the lose of the epsom salt baths. She also battles extreme constipation and takes Milk of Magnesium for that but it isn't enough. So I'm hoping the cream will help with both aspects.
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Hi-
I've used this on my daughter for years- massaging it into her back and feet-
It's one of my calming tools.
No herx--for us-
Started it after I saw how well/calm she became after Epsom salt baths-
then she went to showers only,
thus I switched to the cream.
I like it very much for her--
Thanks. I'm going to give it a try tonight after her shower.
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I ordered some of this through Kirkman's. Should I expect to see any herxing with this stuff or is it pretty harmless?
Never easy to wait.
Our update
in PANS / PANDAS (Lyme included)
Posted
Ditto Eamom. Reading your post and the first thing that came to mind were gluten and dairy issues. Enterolab tests for intolerances via stool sampling and doesn't require a dr signature.