It's Not What I Expected To Hear.

[Gentleheart]

As most of you, I've been unwell for many years. I went through the medical doctors first, with many unexplained symptoms, including anxiety, panic, bloating and heartbeat irregularities topping the list. When they found absolutely nothing clinical, they concluded it must be psychological and recommended prescription drugs. I actually took the drugs for awhile, but eventually stopped after seeing little results and not wishing to use them longterm. Next, I tried several alternative doctors. After taking tons of expensive supplements and still not seeing any results, they too said it must be in my head and recommended mind/body/energy stuff, which I choose to reject. I finally went the psychologist route. Even they found nothing wrong with me, other than a commonly high amount of day-to-day stress, suggested I go back to the doctor and recommended the same customary drugs again. Having come full circle, I finally gave up and just lived with my discomfort.

2 years ago, however, because of some allergy tests I ordered myself which came back positive, ending in a comprehensive one from Enterolab that was also across-the-board-positive, I excitedly concluded that I had finally found the problem. I embraced this new lifestyle with all my heart, never cheating once. I joined this forum and read absolutely everything on the subject. But in spite of all my faithfulness, I saw no change whatsoever in my health after two years.

Veterans on this board have said that lack of results on the diet may honestly indicate another problem entirely, cross contamination or other undiscovered allergies. So I explored it all again, until I had painted myself into a corner, afraid to eat anything. Realizing that that was obviously not going to work and that I needed answers, I reached out to the medical establishment once again and got permission to plead my case by letter to a distant prestigious medical institution specializing in celiac.

I poured out my heart in the letter, giving all relevent details and including all my tests. Then I waited.

A short time ago, I received my reply. It came as a personal letter from the head doctor and was extremely kind and gracious. The doctor did not down me or make me look foolish. But the doctor did give an honest opinion that I didn't want to hear.

This famous celiac doctor, who will remain nameless, does not regard any of Enterolab's tests medically valid as diagnostic tests, including the malabsorption one. This doctor also does not even consider a cheek swab valid as a genetic test. This doctor's conclusion was that I am highly, highly unlikely to have celiac or even gluten intolerance, primarily because I got no remission of any of my symptoms from following the diet. The doctor shared all of this kindly and without judgement against me or Enterolab or anyone else. It was just given as a matter of fact. Since I am considered at such a low likelihood of being celiac under these circumstances and because they are so swamped with diagnosed celiacs having problems, I was denied admittance.

I desperately wish that Dr. Fine would have gotten his research published. If it is indeed the truth, then we all need to know it. But if it is not, then we need to know that too. Many of us have literally fashioned how we live based entirely upon his findings.

So here I am, back where I started and still without answers. This lifestyle is a small price to pay IF it makes you feel better. I would gratefully do it for the rest of my life without complaint, to achieve that. But it isn't worth the price if nothing happens. I'm trying to decide whether to gradually add all the forbidden gluten and scores of other foods back into my diet and just go down another road. I am a very private person and had initially thought to quietly fade away from the forum without writing this. But I finally decided to share before I made my decision.

This is a wonderfully caring group of people and I salute you all for your kind willingness to share openly to help others. Even if I end up not being one of you, I admire the ministry to others that you are providing.

God Bless.

[bluejeangirl]

As most of you, I've been unwell for many years. I went through the medical doctors first, with many unexplained symptoms, including anxiety, panic, bloating and heartbeat irregularities topping the list.

So here I am, back where I started and still without answers.

This is a wonderfully caring group of people and I salute you all for your kind willingness to share openly to help others. Even if I end up not being one of you, I admire the ministry to others that you are providing.

God Bless.

Gentleheart,

Don't give up and please don't lose hope. Still come here and read cuz you never know where those anwsers will come. I certainly enjoyed your input and would miss you posting to.

For time being careful with sugars and caffeine. Keep your carbs low and complex so that they take awhile to digest. Don't ever get to hungry or low in blood sugar. This will help with anxiety and heart. Have you looked into Lucinda Basset's (sp) tapes on dealing with the panic attacks. They are very good. You don't have to be afraid of these episodes once you learn to deal with them.

God bless,

Gail

[CarlaB]

Gluten ultimately was not the underlying problem for me, either despite positive Enterolab tests. I used to have very real reactions to gluten, but did not get better on the gluten-free diet .... though my GI tract did get more irritated with gluten.

Once I found the true underlying cause, I am now substantially better. I am also eating a "normal" diet again with no food sensitivities whatsoever (well, beans still upset my stomach, LOL).

With systemic disease that has become chronic, there is usually no easy answer. I will direct you to what my answer was just in case it's your answer, too.

Don't quit looking until you find the problem ... take it from me, there is something causing this!

Open Original Shared Link

[Fiddle-Faddle]

I was also going to suggest that you check out the Lyme Disease thread and also look into mercury toxicity, bacterial infections, and systemic yeast infection. I would especially suspect Lyme Disease, as it seems that many of your symptoms are similar to those here who had positive diagnoses of Lyme Disease.

If it is Lyme Disease, that might explain why Enterolab tests were positive for gluten problems and malabsorption--and why the gluten-free diet didn't make your symptoms disappear, because Lyme can cause that. But check out Carla's link, as I know very little about Lyme.

Best wishes for good health for you in 2008! Please keep us posted, okay?

[Gentleheart]

Thanks everyone for the kind words and wise suggestions. I appreciate your time.

Carla,

I just checked out the Lyme thread and will try to take the time to read through all of it to educate myself. I already can see that I have a lot of the symptoms. Someone suggested it to me a year ago on this site, but I didn't follow through on it then, being convinced I was celiac.

I probably should ask this on the Lyme thread and will do so after this one time, but I do have a couple of general questions I'd like to ask you here:

Can a person actually have active Lyme's disease for 10 years? To what physical end does it finally progress or does it just remain an underlying chronic annoyance throughout a person's life?

Will I likely have trouble getting my doctor to agree to test me for it, especially since I have no recollection of being bitten or any observable rash for him to see? I did a lot of self testing for gluten and learned my lesson from that experience. I imagine it is best to get tested through a doctor for many of the same reasons.

What is the primary treatment for Lyme's disease and how long does it usually take before changes are seen?

Thanks!

FiddleFaddle,

Enterolab said that they didn't notice any parasitic activity when they observed my stools. I did ask them about that. They said they definitely would have noticed a serious parasite condition and called me. That's nice to know. I tested negative on yeast intolerance with them too, but I realize that is different than candida or other parasitic type yeast overloads. I've also had all my amalgams removed years ago and gone through a couple of mercury detoxes in my 'sickness career' just in case. I haven't been specifically tested for bacteria, as far as I know.

BlueJeanGirl,

I actually have Lucinda's tapes. I went through them quickly once, but need to get them out again. Thanks for reminding me. I guess I still don't honestly know if my troubles are emotional or physical. But her tapes are good for just about anybody regardless. I eat a low glycemic diet most of the time and so far continue to have normal blood sugar in spite of everything else. I do have weight issues and am always trying to keep my high glycemic carbs on the low side. I am disgustingly disciplined in my diet and have few bad habits. Sure wish it would pay off!

By the way, I do want to say for the record that Enterolab has always been extremely nice to me. I respect them greatly and choose to believe that they are probably doing a great work. I just think we all need more information and more cooperation between the professionals before we can truly benefit from it. I've come away from this thing more confused than when I went in and that shouldn't have to happen, especially with so many brilliant people working on the problem.

[CarlaB]

Can a person actually have active Lyme's disease for 10 years? To what physical end does it finally progress or does it just remain an underlying chronic annoyance throughout a person's life?

Yes, I had it for 35 years undiagnosed. I would have flare ups, then periods of relatively good health. This recent flare up has been 5 years now and got me to the point where I was pretty disabled, but with treatment I'm almost back to normal. I have a few days each month where it flares up and I feel bad, but other than that, I'm pretty normal.

It can progress and be rather severe ... it can lead to death, but usually leads to discomfort/disablity rather than death ...

Will I likely have trouble getting my doctor to agree to test me for it, especially since I have no recollection of being bitten or any observable rash for him to see? I did a lot of self testing for gluten and learned my lesson from that experience. I imagine it is best to get tested through a doctor for many of the same reasons.

Unfortunately, Lyme Disease has a political battle surrounding it in the medical field .... so it's even more difficult to get a diagnosis than with celiac disease, if you can believe that! You have to get tested by a doctor. Most questions regarding testing will be answered in the Lyme thread, but I can say here, your doctor will most likely dismiss Lyme entirely ... if he does test, he will most likely use a local lab ... you need a specialty lab.

What is the primary treatment for Lyme's disease and how long does it usually take before changes are seen?

Extended antibiotics. I also take many supplements and do many natural things to support my health.

It varies on how long it takes to get better. I have gotten well in a little less than a year. It's quite remarkable considering how sick I was and for how long I've had this. Others can take longer. I am still on antibiotics.

The key is getting a good Lyme doctor ... I travel from Ohio to NY to see mine and he is worth every penny. He treats very aggressively. I don't have to go every month ... just every four months, but I have monthly blood work done locally and have a monthly phone consultation.

I would also suggest going to www.ilads.org .... look at Dr. B's diagnostic hints and treatment guidelines ... that will answer a lot of questions.

[Gentleheart]

Thank you. Would it be wise in this situation to at least do an initial self test to see if I likely have it before traveling such a distance for a specialist? Is it an expensive procedure?

I will consult the Lyme thread for testing information.

[CarlaB]

There simply is not a self-test available.

If your doctor will test you, be sure the lab used is IGeneX. I had to have the test kit sent to my house, then take it to my doctor, so I'd be sure she'd use the right lab.

The thing is, Lyme is diagnosed clinically .... the test supports the diagnosis. Plus, most doctors don't understand the test. So if you do have it done locally, be sure you get a copy of the results ... you can post here or at Lymenet for help understanding them.

[Gentleheart]

I can sure see a potentially long journey ahead, when I'm still exhausted from the last one. It's hard to start down another dark, expensive road without a real diagnosis again. But I guess it's either that or continue living an uncomfortable life. Here I go.....

Thanks again! I appreciate the flashlight.

[Fiddle-Faddle]

I am wondering if it is worth saying that you DO remember a tick bite/rash....

I apologize if that seems unethical. Really, it goes against nearly everything I believe. But under the circumstances, when the medical system itself is far more unethical, isn't the important thing is to get tested?

[CarlaB]

About half the people with Lyme remember neither .... and being in an endemic area is meaningless, too ... I got it in an area with "no risk."

You could always say you want to be tested because you might have had a tick bite ... that would be the truth ... there will be no need to lie to a Lyme doc though.

[Gentleheart]

I am wondering if it is worth saying that you DO remember a tick bite/rash....

I apologize if that seems unethical. Really, it goes against nearly everything I believe. But under the circumstances, when the medical system itself is far more unethical, isn't the important thing is to get tested?

I certainly realize the strong temptation to lie to achieve an honorable goal in this situation. But I am honor-bound to stick to the truth since the Bible promises it will "make you free." Interestingly, I actually do remember a tick that was quite imbedded in my scalp a few years ago. But I was having most of my current symptoms well before that episode, so it most likely isn't it. Sure wish it was in the right chronological order, though. It would be so much easier if I could present such a case to the doctor.

My family doctor is a kind and talented man and we get along well. But he knows that I tend to lean to the 'natural alternative' side of things and we've had some disagreements along the way concerning the indiscriminate use of drugs. I like to know "why" I have certain conditions and where I'm heading before I consent to taking drugs just to alleviate the symptoms. Sometimes, he just recommends the drugs and doesn't really know why I have what I have. I'm sure I'm a real thorn in his flesh at times!

Anyway, I don't honestly see him consenting to testing for Lyme's. Even though he might actually like me, after so many years of sickness I'm sure "hypochondriac" has crossed his mind more than once concerning me. He can't get past the notion that panic is ALWAYS emotional. Once you've been diagnosed with panic, some common and unfair assumptions are made and it's difficult to get the medical profession to take you seriously concerning anything else.

[Fiddle-Faddle]

In that case, you can honestly say you need to be tested because you KNOW you had a tick bite!

Lyme can masquerade as all kinds of problems. Isn't it possible that you had some kind of bacterial infection, or some kind of parasite, which caused your initial symptoms, and THEN got bitten by a Lyme-carrying tick, and the spirochete that infected you simply "took over" the initial symptoms which originally had nothing to do with Lyme???

Carla can tell you if Lymenet is a helpful place to go, too (I've heard of it, but am woefully ignorant about details).

[CarlaB]

Lymenet is very helpful. Keep in mind though, that many people there are very ill and Lyme can cause some pretty bad neuro/cognitive symptoms ... more fights there than here. But, overall, it's a good source of information. Just like here, you are talking to patients, so take everything with a grain of salt and research yourself. But, yeah, I post there a lot, too, under a different name .... if you want to know it, PM me and I'll tell you.

[Gentleheart]

In that case, you can honestly say you need to be tested because you KNOW you had a tick bite!

Lyme's can masquerade as all kinds of problems. Isn't it possible that you had some kind of bacterial infection, or some kind of parasite, which caused your initial symptoms, and THEN got bitten by a Lyme-carrying tick, and the spirochete that infected you simply "took over" the initial symptoms which originally had nothing to do with Lyme???

Carla can tell you if Lymenet is a helpful place to go, too (I've heard of it, but am woefully ignorant about details).

I know Lyme's can be quite confusing to diagnose. So who knows. That could be exactly what happened. I won't know my doctor's reaction until I ask. Why can't anything be easy?

Lymenet sounds like a forum. Is that right?

[CarlaB]

Lymenet has a forum ... it is a website.

Oh, and after my last post I realized people here are sick, too. That's how we get here. But a lot of people hang around here when they're better, so you're talking with people who are now healthy ... not the case necessarily over there .... most are still sick ... only a few hang around.

[Gentleheart]

I HATE fighting. I didn't choose my name for nothing. But I do love a good, intelligent discussion. I will probably just go in there and observe and learn for awhile. Thanks for the suggestion.

[Gentleheart]

Lymenet has a forum ... it is a website.

Oh, and after my last post I realized people here are sick, too. That's how we get here. But a lot of people hang around here when they're better, so you're talking with people who are now healthy ... not the case necessarily over there .... most are still sick ... only a few hang around.

Poor things. Being sick all the time is the pits. I'll be sure to cut them some slack.

[confusedks]

Gentleheart,

I just wanted to jump in here with Carla and say...LOOK INTO LYME!!! I think it's reallly under diagnosed and is a big problem. I thought Celiac was definitely the cause of my health problems, but then after being on the gluten-free diet, I got better for a while and then I started to get really bad.

I never would have thought Lyme disease would be what I was dealing with, until I really thought about my health history I realized that it fit perfectly.

I strongly suggest that you pay the money for a LLMD (Lyme Literate MD) because it will save you money in the long run. I went to a Dr. who supposedly treats Lyme and it was a HUGE waste of time, until I went to an LLMD and they have been amazing to me. Also, there is no need to lie about anything to an LLMD since they really don't think you're crazy!

[Gentleheart]

Gentleheart,

I just wanted to jump in here with Carla and say...LOOK INTO LYME!!! I think it's reallly under diagnosed and is a big problem. I thought Celiac was definitely the cause of my health problems, but then after being on the gluten-free diet, I got better for a while and then I started to get really bad.

I never would have thought Lyme disease would be what I was dealing with, until I really thought about my health history I realized that it fit perfectly.

I strongly suggest that you pay the money for a LLMD (Lyme Literate MD) because it will save you money in the long run. I went to a Dr. who supposedly treats Lyme and it was a HUGE waste of time, until I went to an LLMD and they have been amazing to me. Also, there is no need to lie about anything to an LLMD since they really don't think you're crazy!

I hesitate to continue on with discussing Lyme's here unless it's OK with everyone, since Scott has set up a special area for it elsewhere. But I admit that it would be easier for me to just keep going here. All of the information you all are giving me is really valuable and helpful.

confusedks,

How do I find these LLMD's? Since Carla has to travel such a long distance, are they few and far between? Will my insurance LIKELY cover such a doctor, or will I LIKELY be on my own?

[CarlaB]

Since this thread was started with you saying you weren't getting better with gluten-free and that you didn't know where to go next, I don't think anyone will have a problem with it being here. Plus, it's your thread, so if you don't have a problem .....

On the other hand, if the info is here, it's not in the Lyme thread to help those in the future with the same questions.

So, it's up to you. I'll be checking here.

You can post on Lymenet under seeking doctors for a doctor recommendation. Some LLMD's take insurance, others do not (I think most do not). But, you can send it in for reimbursement. All my meds have been covered, that's the important thing as some of them are rather pricey!

[Gentleheart]

Since this thread was started with you saying you weren't getting better with gluten-free and that you didn't know where to go next, I don't think anyone will have a problem with it being here. Plus, it's your thread, so if you don't have a problem .....

On the other hand, if the info is here, it's not in the Lyme thread to help those in the future with the same questions.

So, it's up to you. I'll be checking here.

You can post on Lymenet under seeking doctors for a doctor recommendation. Some LLMD's take insurance, others do not (I think most do not). But, you can send it in for reimbursement. All my meds have been covered, that's the important thing as some of them are rather pricey!

Maybe we won't have to go on too long here and can eventually adjourn to the Lyme thread. But I do have a few more questions.

It was stated that many Lyme's victims are also frequently gluten intolerant. Is that just a statistical fact, or is the Lyme actually causing the food intolerance, distorting the tests and making the intolerances temporary in this case? Carla said that she can now eat an unrestricted diet. If I suspect Lyme's, would it be necessary to continue avoiding all my supposed allergy foods? I don't want to cause even more problems by gradually adding the foods back in, but I admit that after 2 years, it would sure be nice. If I don't feel better anyway, it would be great to have some of those foods back.

What is the typical cost to visit a LLMD? Do any of you who are following a Lyme's regimen experience problems with continuous antibiotics? Do you alleviate the problems with probiotics? I can learn more about the medications and the alternative nutritional tools on the Lyme's sites. But I am curious as to the long term ramifications of all those powerful antibiotics.

If I don't think my regular MD will listen to me about this, then am I understanding that my next move would be to just go directly to an LLMD even if I don't know if I have Lyme's at all? I wonder how many times they get people who test as NOT having Lyme's?

[confusedks]

Gentleheart,

I know that a GI dr. wanted me to go back on gluten for a biopsy and we asked the LLMD what he thought and he got realllllly mad and said "DON'T DO IT!!" He said that you need to avoid the foods that are causing problems, but the goal is that eventually once you fix what's causing the intolerance (ie Lyme, etc.) then you should be able to consume a normal diet.

For me, I will probably stay gluten-free because I do have a family history of celiac disease, so I see no point in adding gluten back into my diet, especially since I think gluten isn't really great for you anyway.

So, my suggestion is that you don't eat foods you react to. Also, my LLMD doesn't take insurance and I think a lot don't because they don't want to be told how they can treat their patients as far as meds, etc.

I think Carla had very "positive" gluten sensitive results from Enterolab, so she stopped eating gluten. Now, she can eat it without problems, so I guess her "cause" is not an issue anymore. I'm sure she'll tell you more about this.

As far as costs, I really don't know, because every LLMD is different. Mine wasn't too much more than a regular specialist visit to a hematologist, etc. but I don't know if that's the case for all LLMD's.

I think every LLMD makes SURE probiotics are an integral part of the Lyme treatment to prevent yeast problems, etc. I know I am on them, and Carla is too.

I was really concerned about long term abx use, until I got so sick, I don't really care anymore. It was to the point that I'd do anything to get better...granted I have only been on abx for about 3 weeks. But I think if they are necessary, there's no reason not to use them.

[CarlaB]

We were mentioning that there are a lot of Lymie with gluten intolerance based on observation. At Lymenet gluten intolerance is a relatively common topic. As are other food intolerances and chemical sensitivities.

A couple months ago I was able to add gluten back in my diet. I hadn't been "glutened" in a long time and had been eating out a lot, so I was pretty sure that I could add it back. I used to be very sensitive. I've been back on it for a couple months with no problems. It was clear to me when my GI issues cleared up.

I have no problem with long term abx. I do take a lot of probiotics and avoid sugar.

I honestly can't remember what my LLMD costs ... but considering how long I see him when I'm there, it's not bad. I usually buy a bunch of supplements and my daughter has an appt. too, so it's not just for the visit that I'm paying.

They do a very thorough differential diagnosis, so if it's not Lyme, they will find out what it is. My doctor is an internal medicine doc .... so he is trained to diagnose like any other internal medicine doc, but most go to him for Lyme.

If you have a good number of the symptoms on the list, you are pretty likely to have it, so I think most who end up at a Lyme doctor do end up having Lyme, though there will be some who don't.

If you have food sensitivities, it's a good idea to stay away from them until you've treated whatever is causing them. Eating a food you are sensitive to will just add stress to your overworked immune system.

[mftnchn]

Gentleheart,

I agree with what Carla has said here, and I had lyme undiagnosed for 17 years I think. I had a severe bout with joint symptoms in shoulder/arm/neck early on, then it became chronic though not quite as severe as the initial bout. Generalized joint pain increased year by year, and was undiagnosable by a good rheumatologist who did thorough testing (and also eventually dismissed lyme, LOL) Fatigue and brain fog came in periods, so I'd be better for awhile then have a poor week or several, then better.

I still don't know if I am celiac or if it is lyme, but my Enterolab testing is high as you can see, and I do have the genes according to Enterolab. I have had some changes since going GFCFSF, enough to know that it makes a difference, but it hasn't cleared up all of my symptoms. So many possible factors all the time make it hard to figure out what causes what. So I am going for some alternative types of diagnosis and treatment to try to augment what I am doing with my LLMD.

I have been on antiobiotics for most the the past 7 years as I become symptomatic when I go off of them. I last went completely off in early 2007 (Feb?), and my lyme disease returned in mid May, one month after I went gluten free.

Lyme disease is a battle, though I am doing much better and lead quite a busy life in spite of ups and downs. There are many aspects to treatment, and each person is individual. I am still looking for some missing pieces.

I hope you'll keep posting and that our experiences can help you find your way. I know how very hard it is to be always ill and have no answer, and to be considered a psych case. Good for you for exploring all of those areas too. I appreciate your attitude and spirit about it.