new here-son just diagnosed

[cathy820]

Hello,
I'm new here and have been living a nightmare for the past 6 months.  I've recently had a hysterectomy along with thyroid crashing and finding out I have a not serious anyeurism in my atria as well as mitral valve prolapse.  the recovery from the hysterectomy is brutal and I am exhausted. the hysterectomy has caused sudden onset menopause which is giving me serious cardiac symptoms.  The problem is I have a sickly 5 year old beautiful adopted Korean boy who has just been diagnosed with lyme.  He has a heart of gold and suffers from extreme food allergies and chronic sinusitis.  How will I get him through the heximer reaction when he is already so ill.  He gets bloody noses at the full moon.  will these get worse as I start lyme treatment.  He's had them twice at school already this week and I am not able to conserve the energy I need to recover and care for him.  He was prescribed zithromax today for 3 weeks.  I'm trying to find one that doesn't have food coloring in it which he can't tolerate.  will he have a flare up of yeast?  I was overwhelmed before this lyme diagnosis and I think his treatment will put us both over the edge.  How bad will he get during the zithromax?  any input or advice would be greatly appreciated.  should I get myself checked too? (I was bitten by a tick last summer, but my son never was to my knowledge)
Cathy

[JackieCalifornia]

Kelly has a most excellent suggestion about wheat/gluten intolerance.  Also consider the possibility of an inability to digest milk:  lactose intolerance.  You mentioned that your son is of Korean ancestry, and I have read that Asians are more likely to have 'milk allergy.'  Also American Indians/native Americans ... that's in my family.  Some people who don't have milk allergy too badly can tolerate yogurt and other forms of dairy that are partially broken down chemically already, but some people can't deal with any of it.  I believe it's because there are certain enzymes necessary to break down dairy products, and some populations don't have them.  

When I cleaned up my diet over a year ago to try to stamp out the huge yeast infection I had, one thing I got rid of entirely was dairy:  no milk, cream, sour cream, yogurt, cheese, whipped cream, none of it.  So many foods have hidden dairy or hidden wheat/gluten that it requires a major shift in thinking, but I have to say I don't miss dairy AT ALL.

You might try dietary elimination with your son and see if he responds, or perhaps have blood tests or skin scratch tests or whatever magic the docs can do these days to test.  It can take a while for the body to heal from foods that cause the problem, but not terribly long, and I have to tell you, life is way much better for me without wheat and dairy.  I used to roll my eyes when people would talk about that kind of stuff, but no more.  It's real for some of us.

It's of course important to get the nutrients that the American diet gets through dairy and grains .... with grains, there are some that don't have gluten.  I have discovered quinoa (KEEN-wah) recently, which is a seed that looks and tastes like a grain but has no gluten and provides all the necessary amino acids in the human diet.  It's good stuff and easy to prepare.

As to dairy, calcium is the big thing that it provides, I guess ... but there are other ways to get calcium, like dark green leafy vegetables.

Sorry to ramble on here, but Kelly's comment turned on a big light in my head.

[Kelly_NH]

Jackie _CA just stated many ideas I was going to suggest around probiotics far more eloquently than I could (thanks Jackie!). The only thing that I would add is that some of the symptoms you are describing in your son make me wonder if he has a wheat or gluten intolerance. It sounds like your docs are open to considering the possibilities; perhaps that is one to explore.
I am just here for the first time one year after dx, fearing I'm in the middle of a relapse, so Jackie, I hope you are right (Die, Bugs! Die!). Back to the LLMD as soon as I can get in this week... Good luck to both of you,
Kelly_NH

[JackieCalifornia]

Cathy -- Yes, saccharomyces boulardii is it exactly.  That's the generic name, and there's also a brand name on the market:  Florastor.  As I was trying to figure out my little problem, I found on the 'net medical journal articles from Europe warning about the fungal overgrowth that can result from S. boulardii, and then was when I realized I'm not nuts.  The problem happens not only in individuals with compromised immune systems, but also in those like me who seem to have a genetic predisposition.  I printed out some of those articles and sent to my LLMD, who is otherwise quite savvy.  I got the impression from the articles that Europe is just beginning to realize there's an issue with product, and we're a few years behind them with the product, so ... The theory behind S. boulardii is apparently that the 'good' yeast crowds out the 'bad' yeast, but there seem to have been a few details missed.  I think the docs like the concept because then it removes the big threat from C. difficile infections.  I have not been on abx since all that happened, but my LLMD gave instructions to use regular (but good quality) probiotics, non-yeast, at least a couple of hours before taking the abx.  I got the impression he has concerns about and perhaps experience with noncompliant patients.  

You sound tuned in, which is good, and I'm betting you can find a way to dose your son that will work.

I am very much better now, and several months ago added fruit and quinoa back to my diet ... I can be a total nazi when I have to, and I was with my diet because I was so scared.  So far, so good, and I'm over a year into my cleaned-up diet.  I have not been tested again for yeast, but my nonLLMD regular doc, who is pretty wise, thinks I am probably okay yeast wise now.  Whew.  So it's doable.

Your doc/friend sounds like a very good resource.

A thought about your son ... checking out possible coinfections would be high on my list of things to do, because they mingle with Lyme in unexpected ways and cloud the diagnostic picture.  The second tick that got me gave me Ehrlichiosis, and one of its symptoms is thrombocytopenia, which I had and recognized but did not at that point comprehend that it was a symptom of whatever gift the tick had brought me.  I was a tad addled, so I guess I have an excuse.  The Rickettsial infections (incl. Ehrlichia) have their own bizarre rainbow of symptoms, and while apparently many of those infections are self limited, not all are.  I still get waves of symptoms that are unlike anything that happened pre-Ehrlichia, so I may be one of the lucky ones whose infection is chronic ... dunno.  Treatment is doxy, which I haven't worked up the nerve to take yet, but getting close to trying it.

So long way to say:  I'd be sure my kid's doc was checking all the possible coinfections just to rule them out.  

Wild thought:  could he, in his weakened state, have had a reaction to immunizations?  I know someone whose child got thrombocytopenia as a reaction to regular childhood vaccinations, and that was a few years ago before the shot schedule was amped up the way it is now, with ever more vaccinations in an ever shorter time.  The thesis was that the kid's immune system freaked out and started attacking platelets.  It all settled down eventually, but does make one wonder.  I personally think the massive bundles of vaccinations now given are not such a great idea on tiny, immature immune systems, but I'm old fashioned that way. ....

You commented that 'yeast and lyme are a lifelong battle.'  I'm not ready to agree there, not yet.  I think my susceptibility to yeast is permanent, but can be handled ... at least I hope so.  Lyme, well, who knows .... I think there are cures, but perhaps many of us will have to settle for suppression.  I think I can accept that ... but only if I MUST!  (Die, bugs!  Die!)  

I'm happy to share whatever else I've run across, and hope you and your son are better very soon.  He is so fortunate to have you -- take care of yourself, too, okay?  

[cathy820]

Jackie,
Thanks for your response.  Don't worry I don't think of it as a lecture.  you're helping and I'm looking for help.  Thanks for the warning about the steroids.   Maybe we'll be able to get by without them.  I've advised my doc about the yeast and we will include a yeast protocol in his treatment plan.  then we will also replace the good bacteria with probiotics.  May I ask, was the yeast probiotic that you took called saccromyces boulardii?  I checked with a friend of mine who's a doctor that treats behavioral problems in children.  they see alot of lymes and she wants to take a look at which bands David had as positive.  she knows of some bands that are cross reacted with viruses and said he may have to do a virus protocol as well.  I didn't know she dealt with this.  I was her phlebotomist years ago.  I think both yeast and lymes are a lifelong battle.  I hope you are doing well.  thanks for the support and advice.

Cathy

[JackieCalifornia]

You're dealing with a lot -- sending you good thoughts and admiration for all your efforts on behalf of your son.  Being sick is one thing:  watching your child be sick is a whole level of awfulness beyond.

A couple of things (remember I'm not medically trained, so check all this out with your docs):

-- Steroids are CONTRAINDICATED in Lyme -- they are designed to suppress the immune system, but Lyme is a bacterial infection that the immune system is struggling to kill.  Steroids disarm the immune system.

-- Re swelling -- inflammation is a part of Lyme, a result of the body's immune system attacking the bacteria.  Hence the joint swelling and pain many of us have.  My ears ring and my eyes get blood shot when I'm having a flare, and I get brain-stupid and dull-witted ... my short term memory is useless.  I find decongestants help to clear it out, but I've never checked that with my MD.  If your son has not been tested for coinfections, it's hard to know what is really going on inside him, and combatting the symptoms should be based on the disease process(es) he is fighting.  I would think you need a good diagnosis and rule out of things he doesn't have to know what combination of pharma and nonpharma approaches to take.  

-- I'd address that yeast infection -- it can make a huge difference.  I got a systemic fungal (=yeast) infection from yeast-based probiotics I was on.  My LLMD said he had never seen anyone get such an infection from probiotics, but I have read that some people have a genetic susceptibility to fungal infections (my family seems to have that) and MDs just don't take it seriously.  I say 'fungal' rather than 'yeast' altho yeast is a fungus, because MDs' kneejerk reaction is that it's some pesky little v*ginal infection [I don't know if the bot will block out the word 'v a g i n a l'], but it's not:  it gets in the bloodstream and the brain and throughout the body and can be literally dangerous.

MDs are simply not taught about the seriousness of fungal infections, and the widespread, constant use of antibiotics predisposes patients to fungus.  I would strongly suggest based on my own experience that you press your son's dr to treat the lurking fungal infection that keeps popping up -- if the doc doesn't take it seriously, he's not the right doc, imho.  My LLMD blew off my concerns and was giving me the usual few days of diflucan pills, and only after I kept complaining about my brain fog and ended up with a colonoscopy due to serious gut bloating did the LLMD finally do a blood test, only to find that I had the highest antibodies to fungus he had ever seen, to quote him.  He put me on stronger antifungals for a significantly longer period of time, I stripped all the sugar out of my diet, focussing on protein and vegetables, and I am apparently cured of the fungus ... or so it seems.

Fungus sets up shop wherever it is dark and moist and warm, from the shower stall to the laundry hamper to your sinuses.  Modern medicine just doesn't appreciate the damage that can be done when all the 'good' bacteria are wiped out by antibiotics along with the 'bad' bacteria, and I have found it essential to locate an MD who understands all this to oversee my medical care.  If your son's current MD doesn't take this serious, I would be looking for a new doc, perhaps quietly on the sly, so as not to tick off the current doc.

Dealing with a formidable yeast infection is a necessity -- been there, done that.  The symptoms of a serious yeast infection are so similar to the other disease symptoms that docs discount them and do not take them seriously.

I don't mean to scare you or lecture you -- I feel for you and for your son.  Take care and let us know how you do.  

[cathy820]

Thanks for responding.  I did get started on some hormones and I think it's helping, this month was better than last month.  I''m guessing that I've got it too and have requested the test kit from my dr's office for the Igenix test which is what I used for David.  I'm not sure about the co-infections - I'll check about that too.  

David has swollen sinuses and his eustacian tubes are always swollen, and most of the time he has some amount of fluid in his ears.  His ent is ready to do a second round of tubes on him.  After the first round of tubes, he started with recurring nosebleeds, so maybe addressing the lyme will help with the ear fluid.  the only problem, is that for David, Herxing involves the swelling in his nose and ears to get much worse before better,  so he cant breath at night and his ears could easily get another infection.  he has never taken a steroid, I'm thinking that this is the way to go for him - maybe some steroids along with the antibiotic so he can get through.  I did find a compounding pharmacist who will take the adult caplets, grind them down and make capsules in his dosage without the red food coloring.  Also, David has yeast flare ups pretty severly when he takes antibiotics.  I think this contributes to his sinus and ear problems as well.  Thanks again for helping  - I'm starting to feel like I have more than I can handle.  You're right.  I shouldn't keep putting it off.  I'm sure in the long run I'm making matters worse.
Cathy

[JackieCalifornia]

I posted this response to you under another message, so perhaps you didn't see it, just thought to paste it here too:
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Cathy,

I'm not medically trained, but first off I'd be asking my doc to put me on (at least) short term hormone replacement therapy so I could adjust to the hormone drop.  There may be medical reasons that it's not advisable for you, but it's worth asking.

You ability to cope could (would) also be affected by having Lyme yourself, if you do.  I'd get tested.  Feeling utterly overwhelmed and frantic and anxious is one of the side effects of Lyme.  I think my family and I had Lyme for several years at a low level, never saw a tick, but then I got suddenly very ill with what turned out to be Lyme and a coinfection, which led to diagnosis of the rest of the family.  Lyme is sneaky.

Was your son tested for coinfections as well as for Lyme?  What treatment has been prescribed for him?  Are his Lyme doc and pediatricians on the same page?  There is a split in the medical community about how to treat Lyme and for how long, and bridging that gap takes some effort sometimes.

Herxing is not fun, but for me it was no worse than the illness itself.  I too was afraid of Herxing and put off my treatment for some time, thinking that if I was so sick already, how would I cope with the med-induced Herx?  Turned out not to be a problem:  Herxing was a bit worse from time to time, but no worse than being sick all the time.

But I agree with your concern about your son's other medical issues.  If you could give us some more data, some of us might have some ideas to bounce off your docs.

Take care --