My 14yr son was dx'ed with Lyme last week, after being treated for PANDAS for the last 2 years with only some improvement. He also has autism, and high titers to MycoP and EBV; has received IVIG (monthly) for the past 15 months, is on low dose Zithro, but only for 14 days, right now. Now we find out he has LYME, just when I thought it couldn't get any worse. Got an appt. with a LLMD in MO.; but not until the end of July; I asked the lady that scheduled him if I need to go ahead and test for co-infections....she said no, it won't matter, the treatment is the same. I'm confused, I understood that it is very important. This is all new to me and my brain is in overload! But I also think I may have it too, after learning that you can have symptoms of adrenal fatique. I have been battling this for the last 4 years! PLUS: The soles of my feet just kill me, can not even go without shoes (I thought that was age...I'm 54), I have a rash that comes and goes at the base of my scalp (I thought was just a heat thing), my brain is in a fog (thought that was stress) plus the yeast (thrush) is chronic. For yeast, I stay on a mostly yeast free diet...a great way to loose weight, since you can't eat anything ) Maybe I am becoming paranoid! Any advice would be so appreciated.
Posted by bcb1200 (Member # 25745) on :
I would get yourself tested as well. Before I was diagnosed on 5/3 I felt unwell for 4-6 months and thought it was stress / adrenal fatigue. It probably was...but the root was Lyme. Get an IGENEX test ASAP.
Posted by shadesofpurple (Member # 23923) on :
beweell said "I asked the lady that scheduled him if I need to go ahead and test for co-infections....she said no, it won't matter, the treatment is the same."
I had a Dr tell me the same thing.... treatment is the same.... It is NOT the same.
I would push for co-infection tests, I would also get tested yourself. Just know that IGENEX is not a preferrred provider for some insurance companies, I ended up paying for most of it out of pocket, but i think it was worth it.
Oh yeah i also had a different Dr tell me i was CURED after 2 weeks of Doxy, she then told me she would NOT treat me any further to go back to my family Dr or seek out an infectious disease Dr., she wouldn't even look at the info i printed out on Lyme disease. She had spoken and that was that. She is the Dr that ordered the Lyme test so i have to say kudos to her for that , but she was ignorant when it came to treating it.
She was an ENT Dr ...BUT she wanted to schedule another appt for me in 3 months to see if my ears were still ringing...even though she said they probably would never stop ringing she would like to see me back in 3 months... visits there are about 175.00 with a 30 dollar co-pay for her to tell me inaccurate info... ummm ...yep didn't keep that Dr. Well my ears are STILL ringing, but i kept the co-pay and found a DR that knew something about lyme.
I found a LLMD. I am happy i followed my instincts and found someone else. He tested for the co-infections and other things.
Posted by Dawn in VA (Member # 9693) on :
No, the treatment for co-infections is quite different from that for Lyme. I agree with bcb- get tested via IGENX for coinfections if you can afford it. If not, I'd go for Quest Labs over Labcorp (just my personal opinion) if you need insurance to cover it. Either way, make sure that they do both types of Babesia (WA-1 (aka duncani) and microti PLUS Bartonella, Erlichia, etc.
Posted by Lymetoo (Member # 743) on :
I was successfully treated by this wonderful LLMD. Don't worry. You can go ahead and get tested if you prefer.
What the nurse meant was . . He's going to treat you for all coinfections anyway. (The treatment is "the same" because he does that for everyone.)
We all know that the testing is pretty inadequate... so why not do a trial run of meds for babesia and bartonella in order to see if you respond to them?
A negative test doesn't always mean "negative."
Posted by bewell (Member # 25872) on :
Lymetoo, maybe she did mean that, I thought it would give him a better picture with an IgGeneX lab in hand, when we went for our first vist. Sounds like are you saying he will trouble shoot will different meds, and gage protocol with your response, correct? Thanks so much for everyone's input. I can't believe how nervous I am over this, I have been told my adrenals are not working so I've been on prednisone (solucortef), off and on for the last couple years. Now I read, don't take steriods! I am more worried about my son but I'm also reminding myself to calm down....we'll get through this just fine. My son has great insurance, I will be private pay.
Posted by Keebler (Member # 12673) on :
- I can't read your post, however, just addressing the question:
Q: "WAIT A MINUTE, lyme can cause adrenal issues? "
Absolutely. Please copy and save these links to your research page. So much good stuff here but it can take a while to absorb it all.
Somewhere are good explanations about how lyme damages the HPA Axis (hypothalamus-pituitary-adrenal working triangle of sorts). I'm not sure it's specifically in any of the sources below but you can search for that separately if you like. "HPA axis" is the key. ------------
This book is specific to lyme - and other chronic stealth infections (such as Cpn). The author discusses the endocrine connection and effects of STRESS on a person with such infections. You can read customer reviews and look inside the book at this link to its page at Amazon.
Curcumin Prevents Some Stress-Related Changes (By CP Staff)
Excerpts:
A recently published study investigated the effects of curcumin, a constituent of the botanical turmeric, on changes in cognition and memory caused by stress. . . .
. . . In this new study, researchers investigated the effect of curcumin supplementation on stress-induced learning defects in mice. . . .
. . . In addition, curcumin reversed the stress-induced increase in the levels of serum corticosterone, the primary hormone secreted during the stress response. . . .
. . . The researchers concluded, ``Thus, curcumin may be an effective therapeutic for learning and memory disturbances as was seen within these stress models, and
its neuroprotective effect was mediated in part by normalizing the corticosterone response, resulting in down-regulating of the phosphorylated calcium/calmodulin kinase II and glutamate receptor levels.''
===========================
This is not a lyme book.
This book has only one reference to lyme (in the historical use of sarsarparilla for another spirochetal infection). However, it is a vital first book to read - or a reference - for anyone interested in understanding nutritional methods.
Search for Ashwagandha; Cordyceps; Siberian Ginseng in this book:
Graciously, much of this book is on line. It can also be purchased from this site or through Amazon where you can look inside the book and see many customer reviews.
Afternoon naps are often absolutely required, as per Dr. B's self-care guidelines.
Being GLUTEN-FREE can make a huge different with endurance and mood related to adrenal exhaustion. Many LLMD require their patients to be gluten-free, for good reason.
=================
This thread also addresses matters intricately involved with adrenal dysfunction and fatigue - and what can help:
Topic: To everyone with cardiac symptoms please read !
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[ 05-19-2010, 05:32 PM: Message edited by: Keebler ]
Posted by bewell (Member # 25872) on :
Wow, thank you so much....this will very helpful information.
Posted by peacemama (Member # 17666) on :
Adrenal issues? That's what three/four of us presented with. Adrenal fatigue/low blood pressure.
Posted by bewell (Member # 25872) on :
Could I be herxing? Or just going crazy? 2 weeks ago I began Lauricidin on my son and myself, I am now up to 2 (1/4 scoops) daily....but I'm having more symptoms. I was using it for my yeast; my mouth really burns if I eat certain foods. My neck is more stiff and aching, and my head has a dull pain. Last night I felt like my scalp was crawling with something, but no tic or bugs we could see. Then today I read more about the different complaints of tick-born disease. What test should I have run from IGeneX?
Posted by Tracy9 (Member # 7521) on :
"Lyme disease kills your adrenals," says my former wonderful LLD who was run out of practice.
What is your son on IVIG for? My son is going on it; he also has very high EBV titers but is going on it for low IGG (580.)
Posted by bewell (Member # 25872) on :
Tracy, My son has been on IVIG for the last 15 months for PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep). Following a strep infection back in Dec '07-Jan '08, on Feb 1st of 2008 he developed a tourettes type tic. It is mostly gone after 2 years but he has not made the gains that many kids have (although, does have autism), even with Zithromax. My doc decided to look for co-infections...that's when we found the Lyme. He also has high MycoP and EBV titers.
Posted by Tracy9 (Member # 7521) on :
OMG it's all so confusing.....my son has had strep and scarlet fever when he was young....how do I know he doesn't have this too? But he's been on Zith for a year and a half....
Posted by seekhelp (Member # 15067) on :
Treatment aggressiveness is important too. It's not just that you treat Babesia/Bartonella, you must treat it aggressively to win it seems. Be vigilant about reading all you can and push your LLMD to treat accordingly.
I would most definitely be tested for these coinfections. I highly disagree with that mentality. if you don't know your enemy, you're in trouble. The testing is accurate in all ways, but you may get lucky. That LLMD never tested me for Babesia WA-1. How would the LLMD have ever known I had a 1:2,048 titer? If a doc doesn't know the strain, how on earth could they know how to treat it since it may not respond to Microti treatment. Time is money!! Every month I can't work costs me a fortune. This is why I say push hard back on your docs.
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