I had an appt with a very good food allergist today and he really was remarkably knowledgeable about many fields of medicine. I was talking about a bunch of aspects of my illness with him.
He told me my IgG food tests for gluten and dairy are meaningless and there's no reason to be on a restriction diet. He said my bloodwork and upper GI show no evidence of celiac.
He is testing me for allergies to nightshades.
Furthermore, he said I have no reason to take nystatin or diflucan as candida is a joke. he said he did a thesis on this topic and researched endlessly and said ZERO scientific proof exists of this supposed illness. Maybe it's time to stop wasting money on those scripts! Gosh knows I could use extra ### since I already pay too much monthly on meds/supplements.
He actually did acknowledge Lyme and said there's a fair chance I have it based on my symptoms. However, he said MI is not where to get diagnsed and I'd be better served seeing a top notch teaching institution in NY for further evaluation. He said one highly specializes in Lyme as they are in the "hotbed." I don't recall the name.
He thinks my illness or more likely an unknown / unidentifiable neuromuscular disorder OR a chronic viral infection unleashed by mononucleosis back in late '96.
He did say he wouldn't continue the Abx after 3.5 months until further evaluation. That seems to be the concensus from the medical professionals I've seen this week.
Posted by Boston03 (Member # 18114) on :
If Candida is a myth then what is the white nasty tasting stuff on my tongue that I developed after being on 4 different rounds of antibiotics??
I'm currently using Nystatin and its getting better and is hopefully almost gone.
Did he have an explanation for the yeast that develops from antibiotics if it isn't candida?
Posted by Keebler (Member # 12673) on :
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Candida is NO joke. There is plenty of medical literature about it. It can even be deadly in immune compromised patients. It clearly contributed to my mother's death and pain. She had had horrible thrush for over year and not one doctor addressed that (back in '83-'84).
His IgG tests for gluten cannot diagnose celiac. If you feel better avoiding gluten or dairy - continue to do so. Unless the blood work was identifying genes, it cannot show celiac.
Even upper GIs can miss it. Did you eat at least 2 pieces of bread each day for many weeks before you had the GI BIOPSY? That is required for an accurate test.
And testing for nightshades may not give you the information you need. Nightshades act differently in how some have bad effects - it's not necessary an allergy thing, per se. He should KNOW that!
If he thinks you have a fairly good chance of having lyme - but then turns around and says something else is the real problem - he is still discounting a very important infection that would require treatment.
I cannot tell by your phrasing if you believe this guy or if you are writing with sarcasm. Whichever it is, I don't think he is serving you well.
I hope you find a doctor with a better grasp.
Have you posted in "seeking a doctor" forum or contacted your local lyme support group for referrals ?
There are some LLMDs in Michigan.
Continue to listen to your body if there are foods that irritate or inflame you in any way.
I know it's a roller coaster but it is possible to find a really good set of health care professionals. He may be good in some ways, but it does not sound so in the ways you need.
Good luck.
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Posted by seibertneurolyme (Member # 6416) on :
Don't you just love know-it-all doctors.
Seriously though you seem to be getting the run around from standard AMA docs.
As for Candida not being real -- I am sure the Aids patients who die from systemic fungal infections would beg to differ. People with weakened immune systems and those on long-term antibiotics need to take sensible precautions against candida. There are many herbal alternatives if you don't want to take prescription meds.
People like my mom who have lactose intolerance need to avoid milk although they are not allergic to it. For years docs told her she had collitis and they totally missed the lactose intolerance.
It is not unusual to have an intolerance to a food and not an actual IgE allergy. If you feel better off those foods then avoid them. If you can't tell a difference then maybe the allergist is correct and those foods are not the problem.
To be perfectly frank, I don't know of a single large teaching hospital that I would send a tickborne patient to. Hubby has seen neurologists at Univ of Virginia, Mt Sinai in NY City, Univ of Miami in Fl, Univ of Kansas, Indiana University, and Univ of Pittsburgh. These are only a few of the 25 plus neuros he has seen. Only the neuro from Yale had a clue and even he knew very little about coinfections.
In my opinion, Columbia Univ in NY is about the only possiblity as far as a teaching hospital and have even heard mixed reviews about them.
Keep searching -- don't think you have found the right doc yet.
Bea Seibert
Posted by Keebler (Member # 12673) on :
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If he did a thesis on the "fact" that candida does not exist, I wonder where he got his degree? And in which century ?
I think you have a right to ask for money back from your appointment. He is a fraud, based even just on this.
Candida glabrata - 2452 abstracts (This would require different meds than Candida albicans.)
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Celiac - 19282 abstracts
Nightshade - 6435 abstracts
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Posted by Hoosiers51 (Member # 15759) on :
Seekhelp,
What did he tell you you should do or take if what you are experiencing is viral?
I have often wondered to what degree my current illness is viral, and wondered what the medical profession would tell me to do if that is indeed the case.
As for the candida issue....no matter what you believe or don't believe about candida as an illness, it is my understanding that Nystatin is still important if one is on longterm antibiotics.
For example, females can still get vaginal yeast infections from antibiotics. People do get yeast in some parts of their bodies (like oral thrush), and those on antibiotics are especially susceptible.
I know there are doctors out there that are very "mainstream" who would still support the use of Nystatin with longterm antibiotics. So please don't stop Nystatin!
Diflucan for me hasn't been really necessary....but I'm sure everyone is different. I think the Nystatin and probiotics are doing a good enough job in me.
As for if you have sensitivities to certain foods, I would let your body tell you that, not necessarily bloodwork. That is just my personal experience though.
Posted by glm1111 (Member # 16556) on :
Seek, My daughter-in-laws father went to all the "Best Teaching Hospitals" in the New England area. All of the top ID docs tested him for everything under the sun.
My DIL is very aware of Lyme as her sister has it. Finally an LLMD diagnosed him, but unfortunately it was too late. By that time he was going blind and was in a wheel chair.
They had him on IV antibiotics to no avail. Sadly, he passed away last month. I hope you find a good LLMD soon!!
Not trying to scare you, just trying to nudge you in the right direction so you can get help,
Gael
Posted by adamm (Member # 11910) on :
If you take "knowledgeable" to mean "i feeding you the CDC party line on everything regardless of its truth," than yep, he's quite knowledgeable. "Top-notch teaching institution" = IDSA toolshed
[ 03. December 2008, 10:50 AM: Message edited by: adamm ]
Posted by ukcarry (Member # 18147) on :
If candida doesn't exist then how do people like this allergist explain the symptoms and their obvious link with ingesting sugar? I've come across this sort of attitiude before.
If you prefer to limit the Nystatin or it stops working, Candida Yeast Management by NSI has been very effective for me alongside a low sugar and yeast diet and probiotics: you can get a huge bottle of it from Vitacost at v. reasonable prices. I have had systemic candida as part of the illness for 10 years and this has worked the best, especially important as I've been on antibiotics since March,
Carry
Posted by SForsgren (Member # 7686) on :
Take lots of antibiotics, eat lots of sugar, don't take any probiotics and then one will see that it is not a myth...
Posted by seekhelp (Member # 15067) on :
No thanks Scott. I don't think that sounds smart.
quote:Originally posted by SForsgren: Take lots of antibiotics, eat lots of sugar, don't take any probiotics and then one will see that it is not a myth...
Posted by SForsgren (Member # 7686) on :
I hope that you have found a new doctor. That one does not sound like a good place to stay...
Posted by seekhelp (Member # 15067) on :
He was just a food allergist, not a LLMD. Of course, he's not offering continued care for Lyme. We were just discussing overall health and the direction he thinks may be worthwhile. Obviously, I better take another fork in the road, right? Posted by TerryK (Member # 8552) on :
Seek, In my experience, many allpathic doctors do not believe in systemic chronic candida infections unless you have aids or some other well known, immune suppressing illness.
Due to feedback from my allopathic doctor I did not beleive in a chronic systemic candida infection either. I thought it was just the latest fad and that if I had it, it would be obvious and easy to diagnose. I went to an herbalist she told me I had it, I didn't believe it.
15 years ago, when I continued to get sick and my doctor had nothing to offer me, I finally decided to try some of the over the counter candida remedies.
I got very sick from taking caprylic acid which prompted me to look further. I had mucus coming out in my urine, a metalic taste in my mouth and I felt like I had the flu along with many other symptoms. I did improve on anti-yeast treatment, in fact, I had great improvement.
My allopathic doctor changed her mind about chronic, systemic candida infection when she saw how much I improved.
As far as allergy testing. A couple of years ago I had extensive alternative testing for food allergies. Mostly blood tests. Almonds was one of the severe food allergies that showed up. I told my allopathic doctor about the test results. She flat out told me that blood tests for allergies were bogus. This is the same doctor who didn't believe in systemic candida infections.
I hoped she was correct because I didn't want to stop eating some of the foods that showed up as allergies so I started eating almonds again. I started bleeding from the bowel. I stopped eating them, I stopped bleeding. I thought maybe that was a coincidence so I tried it again. Same result.
I've had many experiences like this over the past 20+ years of being disabled and looking for answers.
The proof is in the pudding as they say. If you get results, who cares if it is proven with a double blind study? I will never go back to accepting what I'm told by mainstream medicine.
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