a herx. Thanks everyone!
Posted by lauriemay1 (Member # 24153) on :
I don't know what IMO even stands for. Or NAET or Bio-Set. I'm just taking her for regular food allergy testing... I have a great Immunologist that we use for my younger daughter who is allergic to alot of things and she gets allergy shots twice per week. Been using this doctor for years now and trust her completely. It's a skin scratch test, not needles... We then verify the results with blood work.
Posted by Keebler (Member # 12673) on :
- IMO (In my opinion). NAET is an acupuncture allergy program but it also involves muscle testing, etc. Some here have been helped by it but I would not suggest it for your daughter. It was worthless for me, but I have porphyria, not allergies. It's far different. My liver can't handle many meds.
More about that in the Tinnitus thread below.
Is she on a gluten-free, dairy-free, casein-free, soy and corn-free diet? That should help. Many lyme patients have to avoid all that. If she can eat almonds, you can make milk from almonds in a blender with water.
You'd need advice on calcium supplementation or which other foods have enough (greens have calcium).
What kind of liver support is she on? That is very important with zithromax. If the liver is not working well enough, symptoms that look like an allergy can appear.
And zith can be very hard on the ears. Liver support can help protect the ears.
But, mostly, you need to ask your LLMD these questions about shock and if that happens, what to do. Her LLMD needs to know about the breathing problems. Please call and let him/her know.
Allergy testing is often sorely deficient. Lyme changes so much about how our bodies work. With lyme cytokines are raised and most allergist would counter that with things that could make us worse.
Especially: avoid all steroids in any form that an allergist suggests (unless for a life-threatening situation). Steroids make lyme blossom.
If you are wanting to consult an allergist &/or immunologist, ask your daughter's LLMD for one who is lyme literate. If not LL, they will likely be no good and even harmful due to their lack of education in lyme.
================
Liver support links are 3/4 of the way down page one.
Specific for LYME patients - lots of details about ears and what can help:
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS -
Posted by massman (Member # 18116) on :
Sorry I tried to help.
Alternative docs know nothing. Especially those that treated allergies.
Info overload is much better than starting out simply. Posted by Keebler (Member # 12673) on :
- massman, you offered you opinion. I offered mine. It's just that. no one said your ideas were of no help. I don't see that was said at all. I just differ about NAET, especially for a child until other things are worked out.
But to say "Alternative doctors know nothing" is a huge statement based not at all in fact. I don't even see where alternative doctors were mentioned so why bash them?
She was talking about seeing an ALLERGIST. Typical allergists are not "alternative" at all. In fact, they often use tons of allopathic drugs.
I don't think allergy tests by either typical doctors or alternative doctors can tell us everything. Not by a long shot.
Still, some "alternative" doctors are brilliant. Some "regular" doctors are brilliant. And there are some in both camps and everywhere in between that can be either brilliant or ignorant - or either in one or more areas.
Chronic Lyme Disease and Co-infections: Clinical Overview (R. Snow) -
Posted by lauriemay1 (Member # 24153) on :
Thanks to both of your responses..... The whole idea of taking her to an allergist is to simply test for food allergies. We don't want to keep writing off every antibiotic, if indeed it is a food allergy that may be causing her problems. She does have seasonal allergies and she's been tested for them in the past - she takes a simple Alavert each day for those symptoms and is fine. We are just trying to weed out what other things may be triggering her symptoms - that are not medication related. You can not treat food allegies with any medicine so I wouldn't be giving her anything harmful, especially not Steroids (Keebler, thank you).... we just want to know what foods to avoid.
My real question is to seek out people who do have medication allergies so that I can see what their symptoms are in comparison to hers.
Thanks!!
Posted by Keebler (Member # 12673) on :
- Breathing problems as you describe would be the most serious symptoms to figure out. In addition to considering the meds, the fillers and the dyes used need to be considered.
Many meds contain gluten. I have to avoid those. Many contain dyes. I have to avoid those.
I'd look to a Autism site as they have been fabulous to weed out food "allergies" - of offending foods for those with autism - and many kids with lyme have the same set of food problems.
Mostly: GLUTEN. Then: Casein (milk), corn, soy, maybe certain nuts. All artificial dyes and additives are usually omitted.
Sadly, food allergies are not always identified in tests. Quite the contrary. Many patients who do have real reactions to additives are discounted by many allergists. I've been there and it was a horrible experience that I'd not want anyone else to have to endure.
So, ask all around. Ask at the Autism groups in your city. Ask which doctors they use to determine allergies. You'll get your best answers there.
Ask them about multiple chemical sensitivities, too (MCS).
However, you might have her assessed for celiac - regarding inability to handle gluten. But an allergy test will not cut it here. Mine was negative. But blood work later showed that I had the genes and did, clearly have celiac.
An early stomach biopsy has also missed the celiac as they failed to tell me I had to be on gluten for the test to read correctly.
Many lyme patients need to avoid gluten. Some can go back after they get treated but for some, it just bring this to light.
Celiac can be genetic and it can also be caused by infection.
There is also a popular thread here for ALLERGIE-IMMUNE --- you might check that out.
Good luck. -
Posted by Keebler (Member # 12673) on :
- Also to consider:
Fluoride in her toothpaste (fluoride can be neurotoxic). And . . .
Aspartame toxicity is not so much due to the liver, exactly, as it has such immediate reaction that the liver barely has a chance to deal with it. It is very excitatory and neurotoxic - to the BRAIN. Even a trace - even in gum and toothpaste. Nearly instantly and then the cascade reaction goes on.
Even a trace can kill brain cells. Anxiety and panic attacks can reach new heights. Depression new lows. With even a trace. It should be avoided at all costs. Totally.
Same with MSG. Google for all the names that hides under as well as all the cutesy products - and even medicines - that contain aspartame.
Excitotoxins: The Taste That Kills - by M.D. Russell L. Blaylock
This is the 1997 edition
No customer reviews at this link but you can look inside the book and read (59 customer reviews) at the link for the 1996 edition of that book - http://tinyurl.com/as6je7
The customer reviews, in themselves, are an education. -
Posted by massman (Member # 18116) on :
Well Keebs, people ask for help + then ignore replies ? Why ?
How about googling terms one does not understand ? Like NAET + BioSet ?
IMO traditional allergists, their testing + treatment are way off base.
I am the complaining alt doc that will not waste his time here anymore. Many here ask + then do not listen to + act on different ways to deal with problems.
Isn't the definition of insanity doing the same thing over + over again + expecting a different result ?
Posted by TF (Member # 14183) on :
Laurie, when I am allergic to a medication, I break out in hives. It happens within the first 3 days, generally.
Once, I got hives from a med I had taken for 2 years. I got the hives when the doctor had me take a higher dose. This was not a lyme med. The doctor believes that I am allergic to the fillers in that med. So, that makes sense to me. Once I got more of the fillers, the hives came out.
I never got hives until I got lyme. Then, numerous medications gave me hives. Some were anti-inflammatories, one was a hormone replacement pill, and one was azithromyacin.
I had a bad reaction to Bactrim, but it was not an allergic reaction. Bactrim gave me insomnia, anxiety, and anorexia. By the third day on it, I could not eat even one spoonful of food in a day and could not sleep one wink. It started on day one and got worse and worse each day. So, I called the doc on day 4 and told him my symptoms.
I thought it was the lyme or a herx or something. He laughed and said it was the medication and to stop it.
So, I can't take Biaxin or zith. But I took Bactrim for nearly a year with no trouble at all.
My husband gets itchy all over his body from a number of meds. He does not have lyme and never did. He gets itchy from pain meds that have codene in them, for example. He has been told to just take Benadryl when he has to take these meds. So, that is what we do. This is a mild allergic reaction to codene.
He doesn't get an itchy throat. We both get that, and a sore throat, from seasonal allergies.
How old is your daughter?
Also, it doesn't sound to me like she had an allergic reaction to Bactrim--really high fever and bedridden sounds like a herx to me.
To really get a good description of an allergic reaction to meds, why not search the internet.
Here are a few sites and quotes I found:
"Antibiotics can also cause allergic reactions. Mild allergic reactions consist of an itchy rash or slight wheezing. Severe allergic reactions (anaphylaxis) can be life-threatening and usually include swelling of the throat, inability to breathe, and low blood pressure."
Allergic reaction to antibiotics largely depends upon the type and quantity of antibiotics taken. In most cases symptoms of antibiotic allergy starts within 24 hours. How long does an allergic reaction to antibiotics last is often the first question that comes to mind when one starts to develop the allergies. It usually lasts for a couple of hours after taking precautionary measures. Rash either in a simple form or as hives begin to appear around the mouth, face, neck, arms and other parts of the body. Redness, swelling, itching and mild fluid eruptions can all occur on different levels of severity. The rash may feel tender and painful when touched.
Difficulty in breathing followed with a choking bout of coughing and wheezing may also be a symptom of an allergic reaction to antibiotics. Trouble in swallowing food can also occur in some cases. Few cases of nausea and vomiting have also been reported. Anaphylactic shock is a very serious allergic reaction that needs immediate medical attention. It could prove to be fatal, if one is not stabilized and given appropriate medical care. Allergic reaction to antibiotics in children are also similar to the ones mentioned above, and they too like adults can develop bouts of diarrhea and abdominal discomfort. Amoxicillin and ampicillin are two very common antibiotics prescribed for young children, and are also common in causing allergic reaction to antibiotics in babies as well. Parents must restrain from giving the children and babies antibiotics without prescription, and must inform the doctor of all antibiotic allergies. Other antibiotics that can cause an allergy include penicillin, tetracycline, chloramphenicol, sulphonamides (sulfa drugs), vancomycin, nitrofurantoin, ciprofloxacin, etc. Read more on allergic reaction to amoxicillin and amoxicillin rash treatment."
"Most allergic reactions occur within hours to two weeks after taking the medication and most people react to medications to which they have been exposed in the past. This process is called "sensitization." However, rashes may develop up to six weeks after starting certain types of medications.
One of the most severe allergic reactions is anaphylaxis (pronounced an-a-fi-LAK-sis). Symptoms of anaphylaxis include hives, facial or throat swelling, wheezing, light-headedness, vomiting and shock.
Most anaphylactic reactions occur within one hour of taking a medication or receiving an injection of the medication, but sometimes the reaction may start several hours later."
I like this last quote the best. It is from the American Academy of Allergy, Asthma, and Immunology.
Notice that the serious allergic reaction--anaphylactic reaction--occurs within HOURS of taking the medication.
I think this explains why your doc told you to continue on with the med. A don't think a doc would take a chance if he thought the patient would have an anaphylactic reaction to a med.
So, I don't think you have to worry about anaphylactic reaction in your child's case.
I hope you can find peace of mind.
Posted by lightparfait (Member # 22022) on :
You may get benefit form the Allergie Immune individualized drops...most clear their sensitivities/or allergies wit this.
Posted by glm1111 (Member # 16556) on :
Laurie,
Ask your doctor to give you a script for an epinephrine (Epi Pen) Pen just in case she has an allergic reaction to something and has a big problem breathing. A safety precaution that would be prudent to keep on hand just in case.
Gael
Posted by painted turtle (Member # 7801) on :
LaurieMay,
When I went into anaphylactic shock almost a year ago now, the attending who saved my life said it happens very quickly so whatever I was reacting to was something that had just happened so it was easy to figure out what it was. Now, I don't know all the ins and outs but I would think the anaphylactic shock would be immediate.
When I had an allergic reaction to Bactrim, my skin broke out and I was feverish. I don't remember about a sore throat.
It's very expensive but Genova Labs does testing for med reactions in people. When I was being actively treated for Lyme, etc. my LLMD knew what was ok to give me and what ought to be avoided, if possible based on this test.
If there is a detox problem in the P450 pathway (or something), then a person will not be able to properly process medicines that go through the liver, which if is a problem...could cause itching.
Good luck.
Posted by sickpuppy (Member # 23846) on :
NAET acupresure has helped me with my abx sensitivities.
Posted by lauriemay1 (Member # 24153) on :
Thanks everyone for your responses...
Keebler, what kind of toothpaste has no fluoride? I'm going to get her tested tonight - will ask about Multiple Chemical Sensitivites. Thank you as always for all of your wealth of information. You truly are remarkable on this site.
Massman, sorry your so discouraged with my timing on responses. Googling is always an option, but I thought I had friends to reach out to on Lymenet.... If I'm wrong I will go elsewhere. I was looking for real life experiences not just verbage on Google. I am trying to talk to those who went through this and my question was to appeal to those who experienced medication allergies not those who did not.
TF and others - your posts did put me at ease. Thank you very much. The shock was what I was always concerned about and was not sure if it was always an immediate reaction. I do carry an EpiPen as my younger daughter has tons of food allergies. My daughter with Lyme is 14. The fever symptom is definately an allergy reaction. It's listed on the medication itself as a warning of reaction. She got a fever on day 16 and I too thought it was a herx but called the LLMD after a couple of days of it not breaking just to make sure. He told me to stop immediately because the fever was high 102.5 - 103 that she may be allergic. To stop the meds for 2 days and restart. If she's allergic she's going to have a stronger reaction. Well sure enough she did - she went to 103 degree fever within hours of taking the Bactrim 2 days later. Never again. I guess everyone has different experiences.. It's so tough to figure out if it's a herx/if it's an allergy.
She's still taking the Zith - allergy symptoms are dwindling down so it may be all herxing which I am hoping it is. We've been really held back from treatment because of the allergies. She started antibiotics in March, but haven't been successful on keeping her on one or ramping one up which is what the LLMD is trying to get to.
Thanks again everyone!!!
Posted by Keebler (Member # 12673) on :
- Many allergists don't really believe in Multiple Chemical Sensitivities - it's really more of a liver being overwhelmed and brain chemistry overload that many lyme patients face. It's not really an allergy, per se. -----------
Toothpaste: I don't use it. Haven't for years. I could not find one that did not burn my mouth, even "natural" toothpastes. And even some "natural" toothpastes have a lot of stuff that is just not needed. And the landfills don't need any more empty tubes.
Be sure to avoid toothpaste that contains sodium laurel sulfate or derivatives.
I just rinse my toothbrush with water and sprinkle some baking soda, wait about 30 seconds for it to dissolve a bit (so that it's not grainy - that could scratch tooth enamel - when melted, that's fine).
You could make a little paste in a cute little dish, I suppose. But it should be fresh each time and each person should have their own little mixture.
Now, as for protection of a child's teeth, you may want to read more about that from a holistic dentist. You might search for "Hal Huggins" books. Not sure if he talks about kids or not but his info. will lead you to others along that line.
It may be that just a little xylitol is best for tooth protection.
You might also search the article library at www.vrp.com for more on dental care.
-----------
Zith: be sure liver support is included at all times. That can also help protect ears. If she develops any ear symptoms, be sure to tell your LLMD immediately.
Liver support links are 3/4 of the way down page one.
Specific for LYME patients - lots of details about ears and what can help:
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS
-----------
Good luck. I know this is a lot to take in and we all have different opinions and various experiences with the same meds or methods - so just take it all it but your daughter's experience will guide you. If something does not work for her, regardless of what an allergy test says - or what experiences would be expected based on replies here - let her body be the road map.
She's lucky to have a mom willing to dive right in to learn more. Take care of yourself, too. And, maybe, somehow, this experience can bring you closer together. It's really all about love (and learning more to help those you love), so you've got a good start there. -
Posted by painted turtle (Member # 7801) on :
LaurieMay,
It just dawned on me, the other thing to consider is that food allergies themselves, according my my Allergist, are pretty obvious because they induce vomiting or anaphylactic shock.
He said it is the food intolerances that are much trickier to discover and I believe he said that they are not really testable.
Anyway, just wanted to throw that out there for you. Just because she is not allergic to something doesn't mean she is not intolerant to it. The intolerance, in my opinion, is a little like Lyme.
Insidious and hard to see on a test! Your allergist will probably know about this distinction.
Posted by aiden424 (Member # 7633) on :
I thought I was allergic to antibiotics until I went to a LLMD and found out I'm just really drug sensitive. I react badly to most antibiotics. I have to start slow and work up slowly,
I am actually very allgeric to Bactrim. I broke out in huge head to toe hives. Even my lips and eye lids swelled. It was awful!!
I get really short of breath when I'm herxing. At first I thought it was the antibiotics, but I get it when I rife too.
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