Discussions By Condition: I cannot get a diagnosis.

My very long medical history

Posted In: I cannot get a diagnosis. 24 Replies
  • Posted By: Anonymous
  • January 1, 2007
  • 06:13 PM

Happy New Year, everone!

What follows is my lengthy attempt to summarize most of my experience of the mysterious, undiagnosed illness I have endured for at least the past two decades. I will start in early childhood and proceed to the present.

I believe I experienced such common childhood diseases as colds, flus and earaches with normal frequency. The only unusual infection I may have had was a suspected pneumonia during infancy, which my parents told me was treated with an injection of an anonymous steroidal drug. I tended to sleep much more than normal as an infant.

I have been underweight throughout my life. I am the thinnest child of thin parents.

I was able to exercise almost normally throughout childhood and adolescence. I never needed to be excused from physical education classes. I avoided intensely aerobic sports such as fast running and basketball due to their tendency to cause lightheadedness, nausea or fainting (vasovagal syncope). I favored sports with rest breaks such as tennis, but was never able to be competitive with healthy players of the same skill level. Occasionally I noticed that I held my breath while I played at peak intensity. Vasovagal reactions to surgical trauma, pain or strenuous exercise continue to occur.

I am not exactly sure when I developed trouble with hot baths and showers, but for at least 20 years they have also caused lightheadedness. If the bathroom is well-ventilated by leaving the door open and a fan running, hot showers (but not baths) have been tolerable. I have also tolerated summer temperatures without air conditioning and long periods without sitting. In general, I would rather be too warm than too cold.

In my late teens and early twenties I developed severe cystic acne that was treated with erythromycin, tetracycline and finally Accutane. Around the same time I began to have occasional heart palpitations. I also noticed that I felt sluggish for a few hours following a meal with a high sugar content.

In July of 1986 at the age of 23 I began to have continuous symptoms at rest and thereby became partially disabled. I was exercising heavily in the weeks leading up to onset, and had taken some time off to recover from a cold of normal duration and intensity. The sequence of arrival of my chronic symptoms is a little hard to remember at this point, but approximately it was as follows:

1. Exhaustion (to be distinguished from fatigue, which is actually sort of a good feeling) accompanied by a strange sense of dryness (or perhaps irritation) in my nasopharynx. The "center" of my exhaustion was (and still is) located in my chest.

2. Multiple small (3mm diameter) vesicles on my fingers, palms, toes and soles (which may have been the result of very high ~ 5g daily vitamin C intake). My PCP at the time aspirated a vesicle and tested the clear fluid contents expecting to find evidence of a blood infection, but nothing was found. The number and size of the vesicles soon decreased; occasionally today I still see a few about 1mm in diameter.

3. Visual disturbances (loss of some contrast and night vision, "bleeding" colors under strong light, and negative afterimages). The afterimages are more intense if I have a fever, which is rare.

4. A sense of lack of clarity or reality (similar to a dreamlike state).

5. A feeling of swelling and irritation in the lymph nodes directly beneath my ears and jaw. I sense a "connection" between those nodes and the exhaustion I feel in my chest. Those nodes also frequently feel worse after I eat, and are now nearly as hard as bone.

I was evaluated by infectious disease, allergy and endocrine specialists in 1986; all tests were normal. The latest tests for Lyme Disease and coinfections are also negative.

In 1987 I had a "remission" that lasted 1 day. The remission occurred 2 days after a couple of plane flights. On that day, I had no fatigue and no visual disturbances, but did have a rather purging attack of diarrhea in the morning. And speaking of diarrhea, when I had an intestinal parasite test done in 1994, it involved drinking a large quantity of salt (Fleet's phospho-soda) and water that was intended to wash my intestines (and any parasites) out completely. The next day, I felt much better. I decided to repeat the purge about a year later, but it had no effect.

In 1988 I took a homeopathic combination viral nosode that for one day caused fever and throbbing in my solar plexus. I felt very strong for about a week afterward, but then began to feel needle-pricking sensations all over (including my eyeballs) as well as burning in my esophagus. Those two symptoms gradually subsided and are no longer present. However, the throbbing in my solar plexus is frequently present.

In 1989 I noticed that my breathing became labored if I consumed a significant quantity of alcohol or fat. My breathing was comfortable as long as I avoided those foods. My breathing during sleep was deep and heavy.

My illness was rather stable for 15 years, then began to worsen toward the latter half of 2001, at which time I noticed much more frequent palpitations—as often as every exhalation. Palpitations are also more frequent when I lie on my left side. I was told by a physician that the palpitations are a result of my low blood pressure, which has been as low as 68/30 at rest.

In March of 2002, I began to continuously feel that I am suffocating. It is not a feeling of obstruction or panic; it feels as if there is simply not enough oxygen in the air, or as if I were under water and need to come up for air, or as if I were hyperventilating. The feeling does not worsen immediately with effort and is in fact most intense at rest. The more intense it is, the shallower I breath. Eating often makes it significantly worse. Sneezing sometimes makes it worse. Even a single Advil tablet makes it worse. For several weeks I noticed an improvement in my dyspnea after ingesting the juice of 3 lemons per day, but that treatment is no longer effective. Hyperbaric oxygen was only briefly and mildly helpful.

Strangely, since onset of chronic symptoms in 1986, I have felt slightly better overall when I have a cold. I can say the same about the flu, provided there is no vomiting. Whether the relief is due to the fever or immune activation or both has not yet been determined. However, a trial of liothyronine in 1992 was not helpful.

At the beginning of 2003 I began to chronically feel swelling and irritation in my gums. Frequently my heart pounds when I awaken in the morning, and at various times throughout the day. Irritability continues to grow.

Sleep is utterly unrestorative. I typically feel worse when I awaken than the night before. Polysomnography shows numerous abnormalities. Since March 2002, the sensation in my shoulders and arms when I awaken in the morning is that I have not slept, but rather lifted weights all night. My brother says that when I sleep, my breathing is shallow, smooth and regular. My breathing has been somewhat freer during the day if I get less than 8 hours of sleep per night. When I hold my breath, pulse oximetry shows that my oxygen saturation slowly rises from a baseline of 95 to 99. This result is consistent with a finding in 1996 that my metabolism is almost completely anaerobic when I attempt to exercise.

I have no morning stiffness. Painful cramping of the posterior side of my rectum is an occasional occurrence made more likely by bowel movements close to bedtime. Cramping of my neck and shoulder muscles has become more and more frequent. Since the dyspnea began, I've noticed a significant increase in muscle lactic acid buildup after activities that I formerly tolerated. It takes about a week for the lactic acid to disperse completely.

In February 2006 my cardiac output was measured at 3.34 L/min supine and 2.30 L/min standing. My supine output dropped to 2.8L/min in July 2006. These results are worse than the output produced by the average patient currently hospitalized awaiting heart transplant.

A diagnosis of Chronic Fatigue Syndrome (CFS) has been suggested. Although I clearly have A Chronic Fatigue Syndrome, I do not have THE Chronic Fatigue Syndrome for the following reasons:

1) I am remarkably free from allergy, infection and chemical sensitivity.

2) My natural killer cell number and function were not impaired when tested.

3) My exhaustion has been centered primarily in my chest, not my muscles or brain as reported by most CFS patients. Until 2005, I experienced no significant cognitive impairment, nor muscle pain, nor joint pain, nor fever, nor sore throat.

4) During most of my illness, exercise was almost as likely to be helpful as harmful to me. Exercise was most likely to be beneficial when the muscles involved had not been exercised for at least one month.

5) My prominent symptom of dyspnea does not usually occur in CFS.

6) The onset of my illness was gradual, neither sudden nor obviously infectious.

7) My exhaustion is constant, not relapsing and remitting.

8) My cortisol level falls with exercise but responds normally under mental or emotional stress.

Cardiopulmonary disease, neuromuscular disease, hypovolemic anemia, thyroid and adrenal deficiency, and various chemical toxicities have been ruled out. Lab abnormalities have included a very low reticulocyte count; abnormal arterial blood gases base excess and T&B cell subsets; mildly elevated Anti-DNA (double stranded) and anti-parietal cell; positive postprandial ANA; high postprandial plasma lactate and blood pyruvate; low fasting insulin; low urine lactate; high 1,25-dihydroxyvitamin D; elevated urinary serotonin and norepinephrine; low interleukin-2 and interferon gamma; very low interleukin-12; and high urine 5-oxo-proline (a.k.a. pyroglutamic acid).

Thanks to all who have read this far! And more thanks to anyone who can respond in a helpful way.

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24 Replies:

  • Wow - that was a lot of info!! Some questions come to mind when I read this: 1. Are you currently on any medications? Do you take any supplements?2. Have you been tested for nutritional deficiencies?3. Have you been to a genetic specialist to rule out certain genetic disorders?4. Do you have an enlarged spleen? Any history of Liver disease and/or jaundice It's possible you could have a genetic disorder causing your problem. I'd try to find a specialist who can do some tests on your blood. Also, some vitamin/mineral deficiencies could be causing some of your symptoms- Calcium, magnesium, and folic acid just a few. A genetic disorder could cause this imbalance and it could get worse over time. I agree with you that this is not looking like CFS. Your heart palpitations and breathing trouble are very concerning. If you can. try to find a acupuncturist who specializes in Chinese Herbal Medicine. This is very effective for palps and SOB (shortness of breath) as well as good at bringing balance to the body. To find one near you please go to www.acufinder.com and type in your zip code. Please consider this - it is a very ancient and complete form of medicine. Hope you find answers and find this helpful.Doctor of Oriental Medicine
    acuann 3080 Replies
    • January 1, 2007
    • 11:22 PM
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  • acuann,Thanks for your reply. To answer your questions:1. I take no regular medications. I rotate among various sleeping pills, both OTC and prescription. I currently take no supplements, but have supplemented heavily in the past with no benefit.2. Yes, tests generally look fine. Any that don't are easily corrected, but there has been no effect on my symptoms.3. Yes, I've also had a muscle biopsy that was negative for mitochondrial DNA mutations.4. Spleen and liver have always been normal.I've tried both Chinese herbs and acupuncture. Some of the herbs (which came in little BB-size pills) had an effect similar to a tranquilizer, and there was definite anxiety when I withdrew from them. The herbal teas were worthless. I once got pretty good results from a session of acupuncture, but it wore off and subsequent needling of the same points was unsuccessful.
    Anonymous 42789 Replies
    • January 2, 2007
    • 00:07 AM
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  • GOD BLESS YOU
    remedy13 24 Replies
    • January 2, 2007
    • 00:30 AM
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  • I am curious how many times you tried acupuncture, did you go to weekly sessions? Because you have a chronic condition it will take longer to see results. If you stopped after 2 or 3 treatments then you didn't give it a chance...also, maybe a different practitioner who can properly diagnose your symptoms could make a difference. re: 1. I take no regular medications. I rotate among various sleeping pills, both OTC and prescription. I currently take no supplements, but have supplemented heavily in the past with no benefit.-- if you knew specifically in which minerals/vitamins you were difficient then supplementing would be more specific. I am a huge advocate for good quality food based supplements as the average diet these days does not provide us with our necessary nutrients. It may take months to see any changes but I still think it would be worth trying. You definitely have a puzzling set of symptoms and I hope someone can offer you insight. Best of luck to you.Doctor of Oriental Medicine
    acuann 3080 Replies
    • January 2, 2007
    • 01:20 AM
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  • Ever look into Celiac Disease?
    Angst2Amity 12 Replies
    • February 15, 2007
    • 02:42 AM
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  • I certainly have. I have a friend who gets very sick if he eats so much as a crumb of wheat. But I've gone gluten-free anyway for up to 3 weeks and saw no results. In fact, my last test of 2 weeks ended with some chocolate birthday cake. The day after, I felt better than at any time during the diet!
    Anonymous 42789 Replies
    • February 15, 2007
    • 04:57 AM
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  • Celiac disease can cause wheat protein to turn into a morphine like substance. Withdrawl usually lasts 4-6 weeks and the toxic chemicals can remain in your kidneys for 26-28 weeks. Therefor, it takes about a month to merely get over gluten addiction and full results take at LEAST six months but probably longer in advanced cases.Non-gluten food intolerences are just as real and dangerous too, they just haven't been well documented, medically.
    Azaral 152 Replies
    • February 15, 2007
    • 05:34 AM
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  • Perhaps I gave you the impression that I was experiencing withdrawal symptoms before I ate the chocolate cake, but that is not the case. I was feeling no difference on the gluten-free diet whatsoever. Supposedly Prometheus Labs in San Diego has blood tests that can diagnose celiac disease without the bother of special diets. Among these are Anti-Gliadin IgA ELISA, Anti-Gliadin IgG ELISA, Anti-Endomysial IgA IFA, Anti-Human Tissue Transglutaminase IgA ELISA, and Total Serum IgA by Nephelometry. I was negative on all of those tests.Another way to diagnose Celiac is with a small intestine biopsy, and I was negative on that as well.Regarding other food intolerances, there are quite a variety of tests available, none of which to my knowledge is reliable, because they all give different results. To eliminate each suspect food for months would take decades!
    Anonymous 42789 Replies
    • February 15, 2007
    • 11:46 PM
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  • Do not take a negative Lyme test as conclusive evidence that you are not infected. They are famously unreliable. Even the best test from Igenex labs give false negatives (personal experience). Look at a Lyme symptom checklist and mark off all that apply and re-evaluate. Co-infections are also hard to test for because there are so many strains of the bacteria and not all of them are tested for. Treatment is simple - antibiotics. I know many people with Lyme and none received help from an IDMD. Beware.
    Anonymous 42789 Replies
    • February 16, 2007
    • 02:28 AM
    • 0
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  • Perhaps I gave you the impression that I was experiencing withdrawal symptoms before I ate the chocolate cake, but that is not the case. I was feeling no difference on the gluten-free diet whatsoever. Supposedly Prometheus Labs in San Diego has blood tests that can diagnose celiac disease without the bother of special diets. Among these are Anti-Gliadin IgA ELISA, Anti-Gliadin IgG ELISA, Anti-Endomysial IgA IFA, Anti-Human Tissue Transglutaminase IgA ELISA, and Total Serum IgA by Nephelometry. I was negative on all of those tests.Yeah these are the tests that are worth something. I haven't heard of any other blood tests that look for non-IgE non-gluten immunological food reactions, though. I would love to know about them if you've heard something!Whatever is going on with you definately sounds auto-immune in nature. Unfortunately, few causes are known for auto-immune disorders other than possible allergens depending on genetic disposition and universally toxic chemical compounds.You did mention you don't have any allergies or chemical sensitivities, but then reading that your post-meal ANA is elevated. Thinking about your lab results and the recurring theme of oxygen, I kind of wonder about a new potential culprit that wouldn't show up as an allergy at all: Carbon Monoxide. Have you lived in the same location, worked at the same place? If you have lived at the same place, a serious radon/lead/carbon monoxide/mold inspection would be in order. If you've moved around more often and it persists unchanged that's probably not a useful avenue of investigation.Have you looked at Hypoxia? It describes a lot of what you're experiencing and what some of the tests would support and it gives a possible list of other types/causes.
    Azaral 152 Replies
    • February 16, 2007
    • 04:51 AM
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  • ...Look at a Lyme symptom checklist and mark off all that apply and re-evaluate...Treatment is simple - antibiotics. I know many people with Lyme and none received help from an IDMD. Beware.Well, first of all I have very little joint pain, which is quite common in Lyme. Then there are some immune cell number and function tests that can reveal bacterial infections including Lyme, and I am negative on those. Then there is a genetic test (HLA) for susceptibility to Lyme, and I am negative on it. Finally, when I have tried 3 different kinds of antibiotics just for the heck of it, I didn't experience any kind of reaction that I would call a Herxheimer....I haven't heard of any other blood tests that look for non-IgE non-gluten immunological food reactions, though. I would love to know about them if you've heard something!Whatever is going on with you definately sounds auto-immune in nature. Unfortunately, few causes are known for auto-immune disorders other than possible allergens depending on genetic disposition and universally toxic chemical compounds.You did mention you don't have any allergies or chemical sensitivities, but then reading that your post-meal ANA is elevated. Thinking about your lab results and the recurring theme of oxygen, I kind of wonder about a new potential culprit that wouldn't show up as an allergy at all: Carbon Monoxide. Have you lived in the same location, worked at the same place? If you have lived at the same place, a serious radon/lead/carbon monoxide/mold inspection would be in order. If you've moved around more often and it persists unchanged that's probably not a useful avenue of investigation.Have you looked at Hypoxia? It describes a lot of what you're experiencing and what some of the tests would support and it gives a possible list of other types/causes.Off the top of my head, some tests for food sensitivities are the ELISA, RAST and ALCAT. But like I said, I don't think any of these are reliable.It may not be entirely true to say that I have no chemical sensitivities: Sometimes bland foods like olive oil or carrot juice "burn" my throat as if they contained pepper. And once when I was at a dentist's office, I got a VERY strong taste of mint or cinnamon from a molding gel that the dentist said contains no flavoring whatsoever.I have tested the house where I became sick for radon, and it was negative. Lead has not been high, but mercury has, so I had my fillings removed and chelated, but I got no improvement. Blood gases tests for CO, and it was negative. There is definitely mold in the house where I got sick, and I have a tape-lift sample being analyzed currently. However, the typical blood tests for mold illness are negative.Hypoxia is not a disease, it is the result of a disease or going to high altitude. It's obvious I have hypoxia, but its cause remains a mystery. What causes of hypoxia remain to be investigated?
    Anonymous 42789 Replies
    • February 17, 2007
    • 00:44 AM
    • 0
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  • I was just reading about cell wall deficient bacterial illness, in my quest to get to the bottom of my illness. Anyway, I noticed in your post that you had high 1,25 hydroxyvitamin D. The article that I just read was talking about how the cell wall deficient bacteria (which, by the way, would not be killed by antibiotics alone) produce 1,25 hydroxyvitamin D. Anyway, I don't remember the specifics, but it may be worth looking into. Try looking at www.marshallprotocol.com or www.immunesupport.com if you are interested in researching it.
    Anonymous 42789 Replies
    • February 17, 2007
    • 01:11 AM
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  • I looked back...here is the article...http://www.immunesupport.com/library/showarticle.cfm?id=7676&T=CFIDS_FM
    Anonymous 42789 Replies
    • February 17, 2007
    • 01:13 AM
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  • Hypoxia is indeed caused by Lyme or another tick borne infection. Mulitple chemical sensitivities are also a result and as well as alterations in taste. More reading can be done here: http://www.lymeinfo.net/lymediseasetreatment.htmlCuriously a patient I know feels temporarily better after he has scuba dived. Some people also claim that a hyperbaric oxygen chamber help them.Joint pain isn't always present in TBID's. It all depends where the spirochete manifests itself. Some people may only experience gastro problems, while others have neuro symptoms. Others develop alzheimer's symptoms. There is no sure process of infection. Co-infections are also important to examine here.According to the CDC, there is no definitive test for Lyme so you cannot rule out negative results if you have supporting symptoms. Since you are not getting any other answers, I'd look further into this.Also, a herx reaction will not always present itself. Taking the right antibiotic at a high enough dosage is important as not just any kind/amount will kill the spirochete.I sure hope you find some better health soon!
    Anonymous 42789 Replies
    • February 17, 2007
    • 02:48 AM
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  • You should have them look into a Fibro Sarcoma in the chest. My husband experienced the same symptons as you, although he has had a valve replacement in 2003.He still suffers from the same symptoms as you. On 8/29/06, he was admitted to the hospital suffering sever chest pain and shotness of breath. They admitted him and told us he had fluid in his lungs. A week of steriods and other medications, his lungs were the same. They decided to tap his lung only to find 500cc of blood. They told us since he is on blood thinners that & hurt him self a month before. It could be a bunch of old blood clot mixed in with fresh blood. I asked him about cancer, the doctor said he doubts it. He is 95 % sure not cancer. they operated on him 4 days later, the surgeon said he never seem anything like this. they sent out for testing. 10 days later, they told us he had a rare cancer called Fibro-sarcoma of the soft tissue, the tumor encased his left main pulmanry and the desending aorta. and also in the left chest wall. It is a deep soft tissue sarcoma. I am not sure how they can tell if you have something like that but look into. We have been to 15doctors and no one found anything until it was too late. My husband has just finished his 6th and last chemo cycle. & sees the surgeon Monday. Good Luck & i hope you will find your diagnosisdonna
    Anonymous 42789 Replies
    • February 17, 2007
    • 03:21 AM
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  • Your respiratory symptoms sound like respiratory alkalosisA sense of lack of clarity or reality (similar to a dreamlike state) and the exhaustion you describe sounds like encephalopathy which is often caused by high ammonia blood levels, ammonia is a neurotoxin which will cause extreme lethargy and altered mental status. It is often misdiagnosed as a psychiatric problem such as depression. Have you ever had your blood ammonia levels checked?Your symptoms could be from a congenital Urea Cycle Defect or an Organic Acid Disorder. http://www.nucdf.org/ucd_symptoms.htmhttp://www.oaanews.org/ Good Luck in finding a cause for you symptoms, I hope your doctors are able to figure it out soon.
    Sammy29 1 Replies
    • February 18, 2007
    • 10:11 PM
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  • ...I noticed in your post that you had high 1,25 hydroxyvitamin D. The article that I just read was talking about how the cell wall deficient bacteria (which, by the way, would not be killed by antibiotics alone) produce 1,25 hydroxyvitamin D. Anyway, I don't remember the specifics, but it may be worth looking into. Try looking at www.marshallprotocol.com or www.immunesupport.com if you are interested in researching it.Yes, I know about the MP, which is why I included the 1,25-D info in my summary. My D-ratio is almost 6, which certainly makes me a candidate. I have MP prescriptions in hand, but am somewhat reluctant to try it. Benicar, which is the centerpiece of the MP, is intended to lower blood pressure, but I am already seriously hypotensive.You should have them look into a Fibro Sarcoma in the chest. My husband experienced the same symptons as you, although he has had a valve replacement in 2003.donnaI don't have chest pain, fluid in my lungs, or cancer. CT scan of the chest is negative. I hope your husband does well with his therapy.Your respiratory symptoms sound like respiratory alkalosisA sense of lack of clarity or reality (similar to a dreamlike state) and the exhaustion you describe sounds like encephalopathy which is often caused by high ammonia blood levels, ammonia is a neurotoxin which will cause extreme lethargy and altered mental status. It is often misdiagnosed as a psychiatric problem such as depression.Have you ever had your blood ammonia levels checked?Your symptoms could be from a congenital Urea Cycle Defect or an Organic Acid Disorder.http://www.nucdf.org/ucd_symptoms.htmhttp://www.oaanews.org/Good Luck in finding a cause for you symptoms, I hope your doctors are able to figure it out soon.I believe my ammonia has been checked, but I'm not certain, so I'll look back through my records. I have had an organic acid analysis that was normal, with the exception I noted in my summary.
    Anonymous 42789 Replies
    • February 19, 2007
    • 03:11 AM
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  • As it turns out, my ammonia had not been checked, so I asked for it to be. The result was well within the normal range.
    Anonymous 42789 Replies Flag this Response
  • Tim, have you looked into NAET? It is a relatively new form of therapy that has been very helpful for certain chronic illnesses. I have a naturopathic doc I see who is also a "medical intuitive", and yes, she seems like a "witch doctor", but she was right on in diagnosing me with both strep and staph infections, which she cleared out of my system. It is an amazing technique and is only used by Medical doctors, chiropractors, DOMs, and naturopaths. Visit www.naet.com. Unfortunately this isn't cheap, and will require at least 15 treatments, but I have found it most helpful and noticed a huge change after only one treatment. Best wishesDOM
    acuann 3080 Replies Flag this Response
  • I am indeed familiar with NAET, and I regard it as a form of quackery, especially when practiced by chiropractors on patients who have no allergies. Medical intuitives are also quacks, unless you happen to be Edgar Cayce!
    Anonymous 42789 Replies Flag this Response
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