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Omg...i Might Be On To Something

Rachel--24

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confusedks Enthusiast
confusedks
Posted

Kristina,

Have you thought about seeing a naturopath or possibly an LLMD? I don't know what your thoughts are, but if the Western Med. community can't find anything wrong with your anatomy (an ulcer, etc.) then they will not do anything for you which I am sure you already know.

I'm just thinking if you maybe went to someone who does more of an overall body treatment, you may be better off. Like Carla always says, these dr's never think any of your symptoms have anything to do with one another, but almost all the time, they really do...they just don't want to look at your entire body.

And, you WILL get through this. I have been struggling a lot too lately and it is REALLY frustrating, but eventually you will start to see the light at the end of the tunnel. :P

Kassandra

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Rachel--24 Collaborator
Rachel--24
Posted
  • Author
Look beyond the symptoms ... you want to know the root cause of all these problems.

I couldnt agree more!!

Kristina,

I dont think anyone here was able to get help from the mainstream doctors....they just didnt have the answers.

I've been where you're at and it was the most difficult and frusterating time of my life. I was in pretty bad shape....most days I wished I would go to sleep and never wake up. I couldnt work, had pain all over and was severely depressed. I honestly think if I'd stuck with the Dr.'s I had...I might not be here today.

If I've come this far I know you can do it too! :)

ALL of the Dr.'s I was seeing the first 3 years were doing nothing but treating symptoms and it never felt right to me. Dont give up....keep looking....just because the Dr.'s arent coming up with anything doesnt mean its impossible to figure out. It just means they dont know what to look for...and they arent looking at *everything*.

I can't keep up. :P

But wanted to say, Rachel that is wonderful, wonderful news. :)

Thanks Rinne! :)

I wanted to say that I'm reading along (I'm not even behind!) even if my time to post has been limited.

Mia...thanks for your sweet post...I did read that. :wub:

I hope you are feeling ok for Xmas this year. :)

Carla....Awesome!! Good news for both you and Chloe. I'm very excited for both of you. :)

Laura,

Thanks for the update!! Its all wonderful news and I'm so glad that you're doing MUCH better now!! It really does feel like miracles are happening. :)

Jin,

I'm glad you were able to have that conversation with your grandmother :) ....I know you've missed her alot.

rinne Apprentice
rinne
Posted

Kristina, I hope you find some answers/treatment soon. :) I'm with the other posters in suggesting you may want to look outside of conventional medicine.

The way I see it is that in many cases doctors are diagnosing damage not disease and the tests they have don't show the damage until it has caused serious problems. Our bodies are smarter than that, they let us know when we are in trouble and we can be in trouble for a long time before the damage shows up.

My experience is that once we are this ill there is no one answer or treatment, I have employed many different treatments that support wellness and continue to as I consider myself only about 70% back.

I know a year ago I had nearly given up because at that point I had been in pain for nearly four years. The five year anniversary of my tick bite is almost here and I don't think I will have to take ABX, I think I have the bugs on the run.

I'm so glad to hear that others are seeing improvements too. :)

Nyxie63 Apprentice
Nyxie63
Posted

So it might not be my gallbladder after all!

Spent 4 hours in the ER today, after having 6 days of non-stop abdominal pain. The thing that sent me in was, in addition to the pain, I woke up this morning to having bouts of sweating, chills, shaking, and light headedness.. but no fever.

Anyway, after 7 tubes of blood, a urine test, drinking a liter of some godawful GI contrast medium, and a CT with iodine contrast, I think I may finally have an answer.

Drumroll please.......

Its my pancreas.

The pancreas looked normal on both the u/s I had last week and today's CT scan. However, I managed to get a look at the bloodwork they did today and both my lipase and amylase were below range. I don't have the exact numbers, but will be getting them from the hospital later this week (they wouldn't release them today). They didn't mention anything about the abnormal bloodwork while I was in there, only suggesting I follow up with my GI.

This could certainly explain a whole bunch of things that have been happening. The pain, the digestive problems, food intolerances, malasorbtion, vitamin deficiencies. All of that!

I'm finally feeling like there might be a light at the end of the tunnel. :)

confusedks Enthusiast
confusedks
Posted

So I had my first iron IV today. It went well, except the car ride home...lol. My mom and I got into an argument about the LLMD. The Dr. today asked where we were going on Friday and my mom opened her big mouth and said a Lyme specialist!!! UGH!! He nicely said just to watch out because some LLMD's are a little crazy and tend to attract patients who are desperate for answers to these unknown diseases.

It was interesting to hear what he had to say, and I partially agree with what he was saying, but at the same time, he can't seem to really help me in any way other than just writing scripts for more stupid IV iron...yet AGAIN, not getting to the root of the problem.

Well, I am really frustrated with my mom now because she is saying she thinks we need to go to Children's Hospital to have specialists do some work ups on me, but I think we just need to go to the LLMD first and then decide what we are going to do.

If I wasn't so drugged up I would have said something to the Dr. Actually, I would have told him we were going out of town to "clear our heads..." LOL!

Kassandra

AndreaB Contributor
AndreaB
Posted
Well, I am really frustrated with my mom now because she is saying she thinks we need to go to Children's Hospital to have specialists do some work ups on me, but I think we just need to go to the LLMD first and then decide what we are going to do.

I certainly hope your mother doesn't cancel this appointment! :angry:

I really think your health problems stem from lyme, especially since you have had a bull's eye rash. There should be no question in your mom's mind that this needs to be dealt with.

Ridgewalker Contributor
Ridgewalker
Posted
The pancreas looked normal on both the u/s I had last week and today's CT scan. However, I managed to get a look at the bloodwork they did today and both my lipase and amylase were below range. I don't have the exact numbers, but will be getting them from the hospital later this week (they wouldn't release them today). They didn't mention anything about the abnormal bloodwork while I was in there, only suggesting I follow up with my GI.

This could certainly explain a whole bunch of things that have been happening. The pain, the digestive problems, food intolerances, malasorbtion, vitamin deficiencies. All of that!

I'm finally feeling like there might be a light at the end of the tunnel. :)

Oh my gosh, yes indeedy- low levels of those enzymes can cause all kinds of heinous issues!!! Sounds like you already know this, but lipase is for digesting fats and amylase is for digesting carbs... Those two make up a huge chunk of what we eat! I hope they get back to you really soon with your results and a plan of action!!!

So I had my first iron IV today. It went well, except the car ride home...lol. My mom and I got into an argument about the LLMD. The Dr. today asked where we were going on Friday and my mom opened her big mouth and said a Lyme specialist!!! UGH!! He nicely said just to watch out because some LLMD's are a little crazy and tend to attract patients who are desperate for answers to these unknown diseases.

You know what they say, if it's not one thing, it's your mother! :P

It doesn't sound like he gave TOTALLY bad advice... I mean, it never hurts to say "Watch out." On the other hand, it certainly wasn't what you needed right now. *sigh* It sounds like your mom panicked. :(

Hopefully she'll at least go through with that first appointment. You need those IGeneX results! I'm sooo glad the Iron IV went well. (((Hugs!)))

Everyone...

You're not gonna believe it! I talked to my mom today, and she is doing MUCH better. I didn't realize how much better she was doing! Sometimes our conversations are confused- sometimes she's on loopy meds, or the kids are running around like crazy-heads at my knees...

Anyway, she told me today that treating the candida is working- her mouth is getting better slowly, but the biggest thing is that she hasn't been nauseated in EIGHT DAYS! :o She's still hating the candida diet, but is 100% convinced that it (along with the probiotics) is helping A LOT.

It'd been many, many months since she last felt good for so many days. So she is making wonderful progress, and I wanted to pass it along!

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AndreaB Contributor
AndreaB
Posted

Great news about your mother Sarah!

Nyxie,

I don't know a thing about the pancreas so I learned something from Sarah. Sounds like resolved those enzymes will help alot!

miamia Rookie
miamia
Posted
Oh, yes, please do!!! You could even text me the positive bands if you can't use your phone in the docs office, LOL!

CArla -

can you remind of which bands are most indicitive of lyme

miamia

CarlaB Enthusiast
CarlaB
Posted

Miamia:

18: An outer surface protein.

22: Possibly a variant of outer surface protein C.

23-25: Outer surface protein C (osp C).

28: An outer surface protein.

30: Possibly a variant of outer surface protein A.

31: Outer surface protein A (osp A). 34: Outer surface protein B (osp B).

37: Unknown, but it is in the medical literature that it is a borrelia-associated antibody. Other labs consider it significant.

39: Unknown what this antigen is, but based on research at the National Institute of Health (NIH), other Borrelia (such as Borrelia recurrentis that causes relapsing fever), do not even have the genetics to code for the 39 kDa antigen, much less produce it. It is the most specific antibody for borreliosis of all.

41: Flagella or tail. This is how Borrelia burgdorferi moves around, by moving the flagella. Many bacteria have flagella. This is the most common borreliosis antibody.

45: Heat shock protein. This helps the bacteria survive fever. The only bacteria in the world that does not have heat shock proteins is Treponema pallidum, the cause of syphilis.

58: Heat shock protein.

66: Heat shock protein. This is the second most common borrelia antibody.

73: Heat shock protein.

83: This is the DNA or genetic material of Borrelia burgdorferi. It is the same thing as the 93, based upon the medical literature. But laboratories vary in assigning significance to the 83 versus the 93.

93: The DNA or genetic material of Borrelia burgdorferi.

CarlaB Enthusiast
CarlaB
Posted

Kassandra, you're still going to the LLMD, right????!!!!

My ob/gyn told me the SAME thing! I said, "Well, I had a positive test, all the symptoms, and am responding to abx, doesn't that mean I have it?"

He was very irritated and hardly talked to me the rest of the appt. I've been going to him for 17 years ... but not anymore.

The thing is, I am getting better. Please tell me you are still going to the LLMD!

mftnchn Explorer
mftnchn
Posted

Kristina, you are surely not alone in your frustration. I think in the USA we get used to the idea that somehow we have the best of the best in terms of medicine and that science has the answers. My undergrad was in nursing and I certainly was in that pattern of thinking too. That is, until I faced such physical difficulties for which there seemed to be no answer. At one point, my company politely asked me to have a psychological evaluation. :ph34r: Although that was not a positive experience, eventually I realized that I needed to do some significant work on some old experiences from the past and some family of origin stuff.

But the physical stuff has a physical cause even though it is inter-related with the rest of our whole selves.

And we need to find doctors who think outside the box, are not afraid to try experimental things, who see our issues wholistically, and above all, practice medicine as an art, not only a science.

Rachel--24 Collaborator
Rachel--24
Posted
  • Author

Mia....these are the bands that are highly specific for Bb.

31 kDa band,

34 (OspB)

39 or OspC (anywhere between 22 and 25).

Also thought to be species-specific are

The 83 and

94 kDa bands.

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
But the physical stuff has a physical cause even though it is inter-related with the rest of our whole selves.

And we need to find doctors who think outside the box, are not afraid to try experimental things, who see our issues wholistically, and above all, practice medicine as an art, not only a science.

Very true Sherry... :)

mftnchn Explorer
mftnchn
Posted
Drumroll please.......

Its my pancreas.

The pancreas looked normal on both the u/s I had last week and today's CT scan. However, I managed to get a look at the bloodwork they did today and both my lipase and amylase were below range. I don't have the exact numbers, but will be getting them from the hospital later this week (they wouldn't release them today). They didn't mention anything about the abnormal bloodwork while I was in there, only suggesting I follow up with my GI.

This could certainly explain a whole bunch of things that have been happening. The pain, the digestive problems, food intolerances, malasorbtion, vitamin deficiencies. All of that!

I'm finally feeling like there might be a light at the end of the tunnel. :)

Glad you might have some beginning of answers. Doesn't sound like pancreatitis, as the enzymes would go way up with that.

I think I have read about low pancreatic enzymes being connected to other things, maybe celiac, maybe something else. I take pancreatic enzymes with every meal, and it helps. I'd still wonder what is behind this??

Rachel--24 Collaborator
Rachel--24
Posted
  • Author

I'm soooo excited to see Dr. Amy this weekend!! It feels like its been FOREVER. I'm really looking forward to it...I think I might bring my voice recorder so nothing we discuss gets "lost". I dont think my mom's going with me this time.

I decided to move up to 3cc's of DMPS this Friday....but I'm a little bit nervous about it.

I'm just praying everything goes well with the mineral IV and then the increase in DMPS. I dont wanna be messed up for my appt with Amy!

I'm also gonna do another Doctors Data to see whats excreted with a higher dose of DMPS...this will be my fourth round.

mftnchn Explorer
mftnchn
Posted

Kassandra,

Yay on the successful iron IV!! Hope it helps you feel better.

I think you should insist on the LLMD appointment. Tell your Mom that you can still ultimately evaluate what the LLMD tells you, and seek other opinions. But to ignore him may be at your peril if all of this is due to lyme disease.

LOL, I'd tell her I'd be willing to go to Children's Hospital in Boston! My friend's son (in Oregon) got lyme disease several years ago, and because doctors in the area believe there is no lyme in Oregon and were ignorant, he did not get treated. He had paralysis and other things going on, and his parents took him to every specialist and got every scary diagnosis. His mom, from the East Coast, suspected lyme, brought it up, and was made fun of.

Finally her sister who went to church with the doctor from Children's Hospital in Boston, mentioned her nephew's situation to this doctor. His response, "I want to talk to them on the phone immediately." On the phone, he said, "You get your son here to Children's Hospital as soon as you can!" They did, and that is where he was finally diagnosed.

I was able to introduce these friends to my LLMD for follow-up. He is doing fairly well.

Your mom has already had good lessons in the ignorance of doctors outside their own speciality (and sometimes even within it!!). In my opinion, insist on the LLMD appointment and your Igenex results!!

mftnchn Explorer
mftnchn
Posted

Sarah, great news about your mom!!

Jin, that's just super about your visit with your grandmother. I also can't wait to hear about your Igenex results and your appointment.

confusedks Enthusiast
confusedks
Posted

Everyone,

I am still going to the LLMD...don't worry! I think I would jump off a bridge if I didn't...lol! I really do think Lyme is a great possibility, but after today I see that if I need to go to a "regular" dr. I will have to put up with all their CRAP for anything I want done. You guys have seen what it's been like just to get the stupid IV's...which he has decided now only to do 5 of. He said 8, then 5, then 10, then now 5 again...I don't get this.

It's really annoying because he is a really nice guy, but I feel like he doesn't know what to do with me anymore...that is why we are still going to pursue Lyme disease.

What REALLY bothered me was my mom said "every 2 months you come up with some new disease that you think you have" and I said, "well, actually it's only been ONE...Celiac and now possibly Lyme...and it's been about 8 months...so :angry:"

I came to the conclusion today that in Western Medicine, if you're not dying, they think you're fine and nothing is wrong with you. It is SO ANNOYING!!!

Sherry,

I bet you my mom would be willing to go to Boston Children's Hospital...lol. She was talking about a clinic in Texas that you go to and they run test after test until they give you a diagnosis. I told her I could probably get 543875438 diagnoses here in LA, but AGAIN, they won't get to the root of the problems.

Sarah,

I am so glad your mom is feeling better....that's great to hear!! :)

Carla,

I keep talking to my mom about you and your success...lol! My dr. was really nice about everything, he really just was trying to say just make sure it is real and feels right to you. He told us about an LLMD in San Diego who was just arrested for "medical malpractice." It turns out I think I was going to go to her...that's crazy!

I am having a really big internal struggle because I want to go into western medicine, and there are some things it's great for...but like I said, if you're not dying...too bad for you! I really have a hard time too because my mom has been "sick" my whole life, but she has never done anything to figure it out. And a lot of the time it's as simple as being dairy free and she feels fine...so it's really hard because there usually isn't anything wrong with her, but she does like the attention for being sick. So having grown up with that, I get the doctors frustration when a patient comes in over and over again saying they are sick, but they truly can't find anything wrong with them.

Kassandra :(

CarlaB Enthusiast
CarlaB
Posted
Mia....these are the bands that are highly specific for Bb.

31 kDa band,

34 (OspB)

39 or OspC (anywhere between 22 and 25).

Also thought to be species-specific are

The 83 and

94 kDa bands.

Better explanation than mine. :)

I'm soooo excited to see Dr. Amy this weekend!! It feels like its been FOREVER. I'm really looking forward to it...I think I might bring my voice recorder so nothing we discuss gets "lost". I dont think my mom's going with me this time.

I decided to move up to 3cc's of DMPS this Friday....but I'm a little bit nervous about it.

I'm just praying everything goes well with the mineral IV and then the increase in DMPS. I dont wanna be messed up for my appt with Amy!

I'm also gonna do another Doctors Data to see whats excreted with a higher dose of DMPS...this will be my fourth round.

I hope all goes well!

Kassandra, I felt the same way ... first it's this that's made me sick, now it's this. Finally, when I got to the "real" problem, all the side issues are gone! People ask about my eating gluten again, and I tell them that I REALLY was gluten intolerant, but it was secondary to Lyme Disease and is now gone!

It doesn't help that your mom is sick, too, and chooses to ignore it.

Go with what you know is right. :)

I think training in western medicine would be a good thing .... because once you start practicing, you will have an open mind to really helping people. You will believe the people who seem like hypochondriacs that want attention.

Plus, doors open at the right time ... you may START studying Western medicine, then be presented with another opportunity that you aren't even thinking of now.

tabasco32 Apprentice
tabasco32
Posted

HEy everyone

SO I went for LED treatment yesterday. It was okay. Felt really tired and sleepy today and didn't want to get out of bed. HUH wonder why ? So unfortunatley I do have Lyme as well. GO FIGURE :angry:

I also have scurvy. Zero, I mean 0 vitamin C in my system. So got more supplements and such.

my next led isn't till January 7 which I feel is a long time between. I don't know.

Only Sh*t once today when I was suppose to go twice. But I didn't feel anything knocking at my back door so How could I. I ate apricots too and nothing. :huh: Lots of vitamin C and magnesia. Felt sick after all that.

Anyway talk to you all later

lisa

tabasco32 Apprentice
tabasco32
Posted

HEy everyone

SO I went for LED treatment yesterday. It was okay. Felt really tired and sleepy today and didn't want to get out of bed. HUH wonder why ? So unfortunatley I do have Lyme as well. GO FIGURE :angry:

I also have scurvy. Zero, I mean 0 vitamin C in my system. So got more supplements and such.

my next led isn't till January 7 which I feel is a long time between. I don't know.

Only Sh*t once today when I was suppose to go twice. But I didn't feel anything knocking at my back door so How could I. I ate apricots too and nothing. :huh: Lots of vitamin C and magnesia. Felt sick after all that.

Anyway talk to you all later

lisa

AndreaB Contributor
AndreaB
Posted
I'm soooo excited to see Dr. Amy this weekend!! It feels like its been FOREVER. I'm really looking forward to it...I think I might bring my voice recorder so nothing we discuss gets "lost". I dont think my mom's going with me this time.

I can't wait for updates on everything! :D

I think you should insist on the LLMD appointment. Tell your Mom that you can still ultimately evaluate what the LLMD tells you, and seek other opinions. But to ignore him may be at your peril if all of this is due to lyme disease.

I agree and am glad you are still going Kassandra.

What a story Sherry!

SO I went for LED treatment yesterday. It was okay. Felt really tired and sleepy today and didn't want to get out of bed. HUH wonder why ? So unfortunatley I do have Lyme as well. GO FIGURE :angry:

I'm glad you are being seen by someone who can help you Lisa.

Keep us posted as you can.

confusedks Enthusiast
confusedks
Posted

Carla,

I have dreams about being an OB/GYN who is Lyme literate!! :rolleyes::P:D I think that would be amazing!!! I agree that studying Western Medicine will be a great thing to do, and who knows I may decide to become a bone doctor....lol!

As far as the health stuff with my mom, it is really hard because I do think she has Lyme, but she chooses to ignore it also. Hmm.

Kassandra

AndreaB Contributor
AndreaB
Posted
As far as the health stuff with my mom, it is really hard because I do think she has Lyme, but she chooses to ignore it also. Hmm.

Maybe as you go through treatment and start improving she'll want to look into it more. One can always hope.

Whatever you decide with your profession you'll be able to add the experiences you have had and be a better medical person for it.

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      Newly diagnosed mam to coeliac 11 year old

      By trents · Posted

      Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods".  Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy with biopsy of the small bowel lining to check for damage would be ordered to confirm the results of "the bloods". However if the ttg-iga test score is 10x normal or greater, some physicians, particularly in the U.K., will dispense with the endoscopy/biopsy. If there is to be an endoscopy/biopsy, your daughter should not yet begin the gluten free diet as doing so would allow healing of the small bowel lining to commence which may result in a biopsy finding having results that conflict with the blood work. Do you know if an endoscopy/biopsy is planned? Celiac disease can have onset at any stage of life, from infancy to old age. It has a genetic base but the genes remain dormant until and unless triggered by some stress event. The stress event can be many things but it is often a viral infection. About 40% of the general population have the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. So, for most, the genes remain dormant.  Celiac disease is by nature an autoimmune disorder. That is to say, gluten ingestion triggers an immune response that causes the body to attack its own tissues. In this case, the attack happens in he lining of the small bowel, at least classically, though we now know there are other body systems that can sometimes be affected. So, for a person with celiac disease, when they ingest gluten, the body sends attacking cells to battle the gluten which causes inflammation as the gluten is being absorbed into the cells that make up the lining of the small bowel. This causes damage to the cells and over time, wears them down. This lining is composed of billions of tiny finger-like projections and which creates a tremendous surface area for absorbing nutrients from the food we eat. This area of the intestinal track is where all of our nutrition is absorbed. As these finger-like projections get worn down by the constant inflammation from continued gluten consumption before diagnosis (or after diagnosis in the case of those who are noncompliant) the efficiency of nutrient absorption from what we eat can be drastically reduced. This is why iron deficiency anemia and other nutrient deficiency related medical problems are so common in the celiac population. So, to answer your question about the wisdom of allowing your daughter to consume gluten on a limited basis to retain some tolerance to it, that would not be a sound approach because it would prevent healing of the lining of her small bowel. It would keep the fires of inflammation smoldering. The only wise course is strict adherence to a gluten free diet, once all tests to confirm celiac disease are complete.
    • Dizzyma
      Newly diagnosed mam to coeliac 11 year old

      By Dizzyma · Posted

      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her  on a full gluten free diet. my concerns are that she wasn’t actually physically sick on her regular diet, she had tummy issues and skin sores. My fear is that she will build up a complete intolerance to gluten and become physically sick if she has gluten. Is there anything to be said for keeping a small bit of gluten in the diet to stop her from developing a total intolerance?  also, she would be an anxious type of person, is it possible that stress is the reason she has become coeliac? I read that diagnosis later in childhood could be following a sickness or stress. How can she have been fine for the first 10 years and then become coeliac? sorry, I’m just very confused and really want to do right by her. I know a coeliac and she has a terrible time after she gets gluttened so just want to make sure going down a total gluten free road is the right choice. thank you for any help or advise xx 
    • xxnonamexx
      Fermented foods, Kefir, Kombucha?

      By xxnonamexx · Posted

      very interesting thanks for the info  
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