Diagnosed With Lyme, Deficiencies , Etc , Please Advise.

[Kurzemiete]

Hello folks at Celiac! It

[mftnchn]

Hello K! Welcome.

There is a dedicated lyme disease thread on this forum which would contain a lot of information that will be helpful to you. Some of us "lymies" watch it, so if you post there you should get some responses.

Open Original Shared Link This link is to a blog by a doctor who treats lyme disease. He is not supportive of any alternative approaches and I think there are a few areas others would disagree as well. But it has a lot of great information on labs and treatments and also case studies. Some of the case studies there are almost the same as yours. You'll find that all of your symptoms could be lyme.

You may just get nowhere with the infectious disease specialist. Be prepared for that.

Lymenet.com (I think that is the name) has a place you can post asking for doctor referrals and hopefully there will be some for your area.

Vit D is probably 25 hydroxy level. You also need the 1, 25 to check. If the first is low and the second is high then it may not be a deficiency at all.

Gluten sensitivity can be secondary to lyme disease rather than celiac.

On the lyme disease thread if you post all the bands that came out on your WB test, you'll get some feedback. If you didn't get those, ask for a full copy of the results.

Sherry

[Kurzemiete]

Hello K! Welcome.

There is a dedicated lyme disease thread on this forum which would contain a lot of information that will be helpful to you. Some of us "lymies" watch it, so if you post there you should get some responses.

Open Original Shared Link This link is to a blog by a doctor who treats lyme disease. He is not supportive of any alternative approaches and I think there are a few areas others would disagree as well. But it has a lot of great information on labs and treatments and also case studies. Some of the case studies there are almost the same as yours. You'll find that all of your symptoms could be lyme.

You may just get nowhere with the infectious disease specialist. Be prepared for that.

Lymenet.com (I think that is the name) has a place you can post asking for doctor referrals and hopefully there will be some for your area.

Vit D is probably 25 hydroxy level. You also need the 1, 25 to check. If the first is low and the second is high then it may not be a deficiency at all.

Gluten sensitivity can be secondary to lyme disease rather than celiac.

On the lyme disease thread if you post all the bands that came out on your WB test, you'll get some feedback. If you didn't get those, ask for a full copy of the results.

Sherry

Hello Sherry and thank you for your reply. Firs of all, what is the link to the Lyme Thread on this site? Do I go just type in Lyme and see what comes up in the search?

"Gluten sensitivity can be secondary to lyme disease rather than celiac"

This is very interesting information and the first I am hearing of this, wow lots of food for thought here.

Why do you think I may get nowhere with an infectious disease specialist, he referred to me by a Lyme Doctor. I feel so in the dark here ...

"Vit D is probably 25 hydroxy level. You also need the 1, 25 to check. If the first is low and the second is high then it may not be a deficiency at all."

Sorry, but what is hydroxy and how does it relate to Vitamin D?

"On the lyme disease thread if you post all the bands that came out on your WB test, you'll get some feedback. If you didn't get those, ask for a full copy of the results."

I am not sure what you mean by a full copy of the results? Is there something which they did not disclose to me, I mean compared to the results I posted on my first post , that was all that came back from the Lab.

Thank you, Liya.

[psawyer]

Click here to go the the Lyme Disease Thread.

It has been going for well over a year now, and has over 840 posts.

[Kurzemiete]

Click here to go the the Lyme Disease Thread.

It has been going for well over a year now, and has over 840 posts.

Thank you Peter.

[Rachel--24]

Why do you think I may get nowhere with an infectious disease specialist, he referred to me by a Lyme Doctor. I feel so in the dark here ...

Welcome to the board!

I think you will find that the IDS will not be very knowledgeable about Lyme. The vast majority of people dealing with chronic lyme are seeing LLMD's (Lyme Literate Medical Doctors).

I also wanted to add that chronic Lyme is *never* just about Lyme....it is multifactorial and requires a doctor who is knowledgeable in all areas of treatment.

[Kurzemiete]

Welcome to the board!

I think you will find that the IDS will not be very knowledgeable about Lyme. The vast majority of people dealing with chronic lyme are seeing LLMD's (Lyme Literate Medical Doctors).

I also wanted to add that chronic Lyme is *never* just about Lyme....it is multifactorial and requires a doctor who is knowledgeable in all areas of treatment.

Thanks Rachel It's good to be here. Of course I am overwhelmed, but I know I am in good company, and that is comforting.

The analogy I can use re my health is: I feel like I am on this strange ship in completey foreign waters, having to navigate with out oars or motor and going to 'I don't know where' lol..But one thing is certian, I am steering in the direction of health, truth, balance, happiness and hope .I am a fairly good advocate for myself, in between bouts of depression and so on...So anchors away! I am reading the Lyme post.

Liya.

[Rachel--24]

But one thing is certian, I am steering in the direction of health, truth, balance, happiness and hope .I am a fairly good advocate for myself, in between bouts of depression and so on...So anchors away! I am reading the Lyme post.

Liya.

You have a great attitude Liya.

Many of us have felt exactly as you describe. Just keep steering in the direction of all things good.....and I have no doubts that you will find your way.

There are lots of great people here who will be happy to share their experiences with you.....you're definately not alone.

[mftnchn]

Hi Liya,

"Gluten sensitivity can be secondary to lyme disease rather than celiac"

This is very interesting information and the first I am hearing of this, wow lots of food for thought here.

CarlaB, who started this forum's lyme thread, is an example. The blog I mentioned discusses it too.

Why do you think I may get nowhere with an infectious disease specialist, he referred to me by a Lyme Doctor. I feel so in the dark here ...

If an LLMD referred you, you will be fine.

The main problem is that there is a sharp split in the medical community about lyme. One group does not believe in chronic lyme and won't treat it. The other group does. You need one that does.

"Vit D is probably 25 hydroxy level. You also need the 1, 25 to check. If the first is low and the second is high then it may not be a deficiency at all."

Sorry, but what is hydroxy and how does it relate to Vitamin D?

It is the forms of vitamin D in the body. You should have both levels tested before treating with vitamin D.

"On the lyme disease thread if you post all the bands that came out on your WB test, you'll get some feedback. If you didn't get those, ask for a full copy of the results."

I am not sure what you mean by a full copy of the results? Is there something which they did not disclose to me, I mean compared to the results I posted on my first post , that was all that came back from the Lab.

The western blot should have values for a number of bands tested. Depending on the results of these they will say the test is positive or negative.

Sherry

[Kurzemiete]

Hi Liya,

CarlaB, who started this forum's lyme thread, is an example. The blog I mentioned discusses it too.

If an LLMD referred you, you will be fine.

The main problem is that there is a sharp split in the medical community about lyme. One group does not believe in chronic lyme and won't treat it. The other group does. You need one that does.

It is the forms of vitamin D in the body. You should have both levels tested before treating with vitamin D.

The western blot should have values for a number of bands tested. Depending on the results of these they will say the test is positive or negative.

Sherry

Ok Sherry, I will inquire about the WB specifics. Thank you.

I spoke with the assistant of the doctor I am seeing this Thursday and she told me he is an LLMD, we had a little laugh because she said to me

"Don't tell him I said so but he is really good. I just like to keep him on his toes!"

And she said that he also incorporates other alternative methods of healing in addition to the antibiotics. So that sounded very promising to me and right now I can't help but feel very hopeful Which is good because the last whiles my glass's been half empty

I have some concerns about my 12 year old daughter as well (could she have gotten Lyme from me?) I have not had her tested for it, I really need to be mindful of what I put her through. I don't mind having myself poked and prodded (Yet!)but she's been through so much with her father's and mine difficult separation and so on...She doesn't have the symptoms as far as I can tell, though her elbows and knees crack but I am not really sure that's abnormal. She isn't it pain in those locations save for when she gets up sometimes her knees hurt a bit.

Besides the cracking (which i also recently developed in my elbows along with the existing in knees and hand joints cracking getting more frequent) my daughter has been having stomach aches for several years. Sometimes they are quite bad, but don't linger more than 30 min usually they are shorter in duration. The frequency is around one per week. I took her to an allergist for a Food Panel Scratch test and what came up as a 3 out of 4 were soya, milk and chicken. She had several 2/4 for barley, beef, string bean, salmon,oats, and peauts. The allergist who did this test for me 1.5 years ago stated that just because it come up on my skin doesn't mean i need to stop eating that particular food. Is that sensible advice? It feels a bit suspect. And the doctor who tested my daughter really discredited herself when she said " It's normal for a person to have one bowel movement per week". It was all I could do from saying "are you Nuts???" (Sorry if I have offended anyone's views here but as far as I have known we should have at least one BM per day)...Well back to my daughter, so I am also looking for advice for her. The allergist suggested that I try eliminating the offending food for at least a week, then reintroduce it and monitor what happens. Since money is an issue for me I can't do the Enterolab tests, for either of us.

PS I also came up allergic to soya, wheat, barley, beef and buckwheat via the food panel scratch test.

Liya.

[mftnchn]

Ok Sherry, I will inquire about the WB specifics. Thank you.

Welcome.

I spoke with the assistant of the doctor I am seeing this Thursday and she told me he is an LLM... he also incorporates other alternative methods of healing in addition to the antibiotics.

Sounds excellent.

I have some concerns about my 12 year old daughter as well (could she have gotten Lyme from me?)

Yes in terms of pre-birth. There's been some suggestion of through breast milk but that isn't so likely. More likely even that she has been in the same environment. Many ticks are too small to be seen. So if you have been bitten, she could have as well.

I

have not had her tested for it, I really need to be mindful of what I put her through. I don't mind having myself poked and prodded (Yet!)but she's been through so much with her father's and mine difficult separation and so on...She doesn't have the symptoms as far as I can tell, though her elbows and knees crack but I am not really sure that's abnormal. She isn't it pain in those locations save for when she gets up sometimes her knees hurt a bit.

I'd ask your LLMD. Some don't treat without symptoms. Pain when she gets up suggest something going on though. It may be much easier to treat before it gets major. On the lyme disease thread, CarlaB mentions treatment for her daughter who didn't have too much symptoms, but did have the stomach aches. She responded very quickly whereas Carla had a much longer and more aggressive treatment.

The allergist who did this test for me 1.5 years ago stated that just because it come up on my skin doesn't mean i need to stop eating that particular food. Is that sensible advice?

My allergist told me something like this. The explanation is that the skin response doesn't necessarily correspond to the discomfort of the actual symptoms. The actual food tests are much more accurate. So I'd take the testing as a guide, then go off the food and then challenge it. You'll know better then which ones are really important to avoid.

And the doctor who tested my daughter really discredited herself when she said " It's normal for a person to have one bowel movement per week".

I think that doctors were taught this because some people do have long transit times. But from this forum we know that most of those seem to have a lot more symptoms too. Especially if you have the need to detox, regular BMS are crucial.

Many of us who are gluten sensitive or celiac also don't tolerate soy. I've read it can also cause villi damage, and that the proteins are somewhat alike.

Sherry

[Kurzemiete]

Hi and thank you so much to everyone's response and warmth ! It's very appreciated.

I have had to move my LLMD apnt from Thursday Nov 27 to Dec 18; my daughter has a fever and grandma is having some of her own health issues so she's not really fit for overnight bbsitting. (the apnt was for 8 am. )

(We also have health issues with some of our pet cats, so it sort of feels like the entire household is sick ; the eldest is being spayed today and she has come to the point that she's peeing in all sorts of places where she isn't supposed to.God willing the spay will help with that problem, also should make her feel much more comfortable)

I will keep you posted as to what happens in regards to me and my daughter.

Hugs, Liya.

[Kurzemiete]

MY UPDATE AND QUESTION REGARDING MY DAUGHTER

I was after all able to make the appointment to the Infectious Deseases Doc Thurs Nov 20(who I was told by his secretary IS a LLMD) . His assistant; an intern, asked me questions re my symptoms. He then did some tests to ( I am assuming) guage my nerve sensitivity: putting a kleenex twirled into a 'tip' on my cheeks and hands, doing 'funny bone' reflex test on my elbows and knees, then he proceeded to place this vibrating metal contraption with a small neele tip into skin of my big toes and wanted to know when I felt the vibration cease. He then went to present his findings to the doctor. The bottom line is that according to these doctors, they are confident i do not have Lyme disease. They said that if I did have chronic Lyme, then this part of the WB test :

"IgM Western Blot Indeterminate"

would be positive by now. And finally, I was assured that my daughter doesn't have Lyme.

A part of me was devastated at their conclusion, because in my mind having Lyme is more concrete that just having the vague Fibromyalgia, here there would be some protocols to deal with it...Is it still worth to inquire for the specific numbers for the WB at this point? I am not really sure whether I should just stop the Lyme path now, and focus on avoiding wheat related things and find other healing paths.

The other thing I wanted to ask is whether anyone has had compromised bladder control when they are sick and in the middle of sneezing? My daughter who is twelve and is with a virus (lots of coughing , phlegm, sneezing and she had the fever for 2 days) said to me that over the course of two days, whenever she would sneeze a little bit of urine would leak out. I have never had this issue and I am 3 times her age, nor heard of anyone with this concern, certianly not at her age. Could this be 'cold/virus' related or is it something to do with some thing else? I'd appreciate any feedback or thoughts regarding this issue.

Liya.

[Rachel--24]

They said that if I did have chronic Lyme, then this part of the WB test :

"IgM Western Blot Indeterminate"

would be positive by now.

Honestly, this does not sound like something that a LLMD would say. It sounds like something that an uninformed infectious disease doctor would say.

Do you know what lab was used for your Western Blots? Was it IgeneX or another specialty lab with a high sensitivity? If not than you are looking at a sensitivity of anywhere from 40% -65%.....which is NOT good. A knowledgeable LLMD would not rule out Lyme Disease based on negative Western Blots....and especially if they were not done at one of the more qualified labs.

Also, chronic Lyme is a clinical diagnosis as negative tests do not rule out the possibility of the disease. An LLMD would know this.....an infectious disease doctor would dismiss all possibility of the disease based on a negative test from the most unreliable labs. This is because they are on the other side of the fence....so to speak.

Even with a high quality lab...with high sensitivity....it is not uncommon to see negative Western Blots in true cases of chronic Lyme Disease. And no...there is no rule which says that a person's IgM Western Blot is automatically positive after a certain period of time. Thats simply not true....and often the sickest people do NOT have positive results because their immune system is overwhelmed and unable to fight the infection. If the antibodies are not there....or if they are weak...you do not get a positive test result.

Lyme is difficult to diagnose because the bacteria is capable of "hiding" from the immune system. If the immune system is not actively fighting the infection at the time of testing...then you dont get a positive result.

Here are 9 reasons for having false negative Western Blots:

NINE REASONS FOR FALSE NEGATIVE LYME DISEASE BLOOD TESTS

The Lyme Disease Foundation (LDF), in their brochure entitled "LDF Frequently Asked Questions About Lyme Disease" lists the following nine reasons for false negative Lyme disease test results.

1. Antibodies against Bb are present, but the laboratory is unable to detect them. [borrelia burgdorferi (Bb) is the Lyme disease bacteria.]

2. Antibodies against Bb may NOT be present in detectable levels in a patient with Lyme disease because the patient is currently on, or has recently taken, antibiotics. The antibacterial effect of antibiotics can reduce the body's production of antibodies.

3. Antibodies against Bb may NOT be present in detectable levels in a patient with Lyme disease because the patient is currently on or has previously taken anti-inflammatory steroidal drugs These can suppress a person's immune system, thus reducing or preventing an antibody response.

4. Antibodies against Bb may NOT be present in detectable levels in a patient with Lyme disease because the patient's antibodies may be bound with the bacteria with not enough free antibodies available for testing.

[For this reason, some of the worst cases of Lyme disease test negative -- too much bacteria for the immune system to handle.]

5. Antibodies against Bb may NOT be present in detectable levels in a patient with Lyme disease because the patient could be immunosuppressed for a number of other reasons, and the immune system is not reacting to the bacteria.

6. Antibodies against Bb may NOT be present in detectable levels in a patient with Lyme disease because the bacteria has changed its makeup (antigenic shift) limiting recognition by the patient's immune system.

7. Antibodies against Bb may NOT be present in detectable levels in a patient with Lyme disease because the patient's immune response has not been stimulated to produce antibodies, i.e., the blood test is taken too soon after the tick-bite (8-6 weeks).

Please do not interpret this statement as implying that you should wait for a positive test to begin treatment.

8. Antibodies against Bb may NOT be present in detectable levels in a patient with Lyme disease because the laboratory has raised its cutoff too high.

9. Antibodies against Bb may NOT be present in detectable levels in a patient with Lyme disease because the patient is reacting to the Lyme bacteria, but is not producing the "right" bands to be considered positive.

If you have unexplained symptoms that would be suggestive of Lyme....then I would continue to investigate. If your Western Blots were from a standard lab with low sensitivity.....they are not reliable. My two recommendations would be to get tested from IgeneX (or another lab which specializes in TBD's) and definately see a more informed doctor.

In my opinion this doctor is not a LLMD....and if he is...I dont think he's a very good one. I havent ever heard of any LLMD completely rule out Lyme based on IgM indeterminates.

Sorry, that things have gotten a bit confusing for you.

I dont know the answer to your question about bladder control but hopefully someone else can give you some input as to what might be causing that.

[spinsterwitch]

I agree with Rachel. Find a LLMD in your area, if you can. The struggle with that may be that some of them don't take insurance.

A good book to read regarding the issues with doctors is Cure Unknown. It just came out and is a really good read on the different ways in which the disease can present in different people.

It is worth getting your family tested if you tested positive because while it would be difficult to for you to infect an older child such as yours, she probably has been in the same places you were when you were bitten by a tick.

[Kurzemiete]

UPDATE

Hi and thank you everyone for your input and support.

For sure I am confused my the doctor's diagnosis (that I clearly have no Lyme), however at this point I have too much going to to very actively pursue a search for an authentic LLMD in my region( I don't own a car and money is very much an issue). There is an enviornmental clinic that I will be on the wait list for (due to my Fibromyalgia) , in fact it was this clinic that actually requested the Lyme blood tests . Thanks to that list, I found out I am ferritin deficient. I need to clarify something re what I stated earlier; my white cells are TRACE but in my urine analysis not my blood. Does anyone know what this means, my GP is very calm about that.

I am having very definite reactions to the gluten in wheat (I don't consume barley or rye on a regular basis). They are allegry like but consistent in that they occur about half a day or so after I've eaten wheat gluten and they always occur! Plust I have lost enough hair in front to be noticable and my eye lashes have thinned out visibly, both over the last year! The hair part sucks, I know it sounds vain, but what can I say, this girl is used to having a semi mane Of course I would love to know the reason WHY this has happened..??? From what I have learned, it can either be gluten or lyme related . Any suggestions ? Has anyone had luck with horsetail supplements in hair regrowth, or any supplements for this purpose?

Also my daughter has frequent stomach aches, the food panel test showed a stron allergy to milk, soya and chicken. However I have some suspicion wheat may be a culprit. I have to get her on a diet without the milk, soya, chicken and wheat and then introduce each food and see how she fares.

Liya.