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Omg...i Might Be On To Something

Rachel--24

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rinne Apprentice
rinne
Posted
can lyme's disease cause joint pain? I have struggled with joint pain for two years. No test shows why that is. My old lyme test was negative. Do you know if lyme can cause joint pain? I have ordered the ignex kit.

Yes it does.

Yes I definitely think joint pain is one of the major symptoms if I'm not mistaken! I've had unexplained joint pain for a long time too. I've even had xrays and MRIs of my knees, but they didn't show anything, not even arthritis. :( A lot of that cleared up when I went gluten free and casein free, but I still have some--it's just not as bad as it was.

Rinne- what you said about steroids scared me, lol. I took them really regularly for the last 4 years up until this last year...everytime I had a sinus infection (which was about every 6 weeks), they gave me huge doses of antibiotics and prednisone!

:( I don't like to scare people. I know that people can recover if they have taken steroids, it just makes it harder.

I have ongoing sinus "stuffedupedness" that I always assumed was a dairy intolerance since I was addicted LOL to dairy I ignored it. I haven't had dairy now for five months and my sinus problems haven't gotten better or worse. Sinus problems are typical of Lyme too.

The lassitude describes me to a tee, I'll wake with notions of doing many things and by the end of the day I may have done one or two but the rest have been relegated to, "I didn't really need to do that today". :ph34r:

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dlp252 Apprentice
dlp252
Posted
"I didn't really need to do that today". :ph34r:

Mine has been relegated to "I don't really need to do that ever" :ph34r:

nikki-uk Enthusiast
nikki-uk
Posted
I'm still not going to have time to catch up right now ... I met someone on celiac.com who had two DQ1 gluten sensitive genes and had a positive biopsy, so there must be some damage possible even with no celiac genes. This one I am certain about .... I met her on a thread and verified what she said.

Carla -I've been bugging the life out of Patti in PM's trying to work all this gene stuff out so it'd be great if you started a thread.

I'm thinking of getting my other 2 boys gene tested and my tiny mind is desperately trying to absorb all the info.... but the info keeps leaking out ! :lol:

AndreaB Contributor
AndreaB
Posted
The HN doctor is having me take a supplement called Pectosol. It's pectin taken from citrus and it's supposed to bind with the mercury that is turned loose in the system by the amalgam removal. I didn't do a lot of research on it, but did find a couple of websites that mention it. Anyway, it was a special order and it came in yesterday, so I took some as soon as I got home from PT/chiro yesterday, and have taken some this morning. She wants me to take it for the 5 days or so surrounding each amalgam removal.

Keep us posted on how your doing with the removal please. Don't you have another appointment today?

Andrea- This is TOTALLY off topic, but I just figured out (brain death is a painful thing) that you collect Breyer horses. did you ever ride? When I was little, I rode all the time and had a gazillion Breyer horse models. :wub::wub::wub: They are so coool!

I wanted a horse since I was 5. Parents got breyers. Had tons of them, bought a lot with my own money. They gave in and got a horse for me when I was almost 16. First horse got taken back by the girl who owned him (he was sold to us without her knowing), second horse was a keeper. Didn't have her nearly long enough for the showing I wanted to do. Only 3 years and then she was out on lease for a long time. I finally gave her to my old 4h leader. She died about 6 years ago from founder.

no not Lyme Literate Bowel Movements

:lol::lol::lol::lol:

Wow, just reading some of that article and THIS really struck a chord with me:

Describes me pretty well...expecially the frequent waking thing. In fact a lot of the articles sounds familiar to me. :(

I'm ready for you to see the bioset lady now. :) I know, everything costs money. We are more than out of it too.

Carla -I've been bugging the life out of Patti in PM's trying to work all this gene stuff out so it'd be great if you started a thread.

I'm thinking of getting my other 2 boys gene tested and my tiny mind is desperately trying to absorb all the info.... but the info keeps leaking out ! :lol:

Hi Nikki! :) That would be an interesting thread.

dlp252 Apprentice
dlp252
Posted
Keep us posted on how your doing with the removal please. Don't you have another appointment today?

...

I'm ready for you to see the bioset lady now. :) I know, everything costs money. We are more than out of it too.

Yep, today. Today they are putting the permanent crown on one of the ones they worked on a couple of weeks ago, plus replacing two amalgam fillings with composite and removing amalgam from and preparing a third tooth for a crown. :blink: Fortunately one of the fillings is just a tiny little thing...BUT it's in one of my front upper teeth...the other two teeth are molars....the way things have gone for me lately that means my entire head will probably be numb afterwards. :lol::lol::huh::blink:

AndreaB Contributor
AndreaB
Posted
....the way things have gone for me lately that means my entire head will probably be numb afterwards. :lol::lol::huh::blink:

:lol::lol:

I hope not. :o:unsure:

jerseyangel Proficient
jerseyangel
Posted
Carla -I've been bugging the life out of Patti in PM's trying to work all this gene stuff out so it'd be great if you started a thread.

I'm thinking of getting my other 2 boys gene tested and my tiny mind is desperately trying to absorb all the info.... but the info keeps leaking out ! :lol:

:D Nikki--you were not bugging me--as a mater of fact, you explained everything to me so I understand my own results better! Plus, it was nice to "visit" with you again :)

Yes, Carla--when you get the chance, it would be most interesting to have a thread about this. I'd go ahead and start one, but I don't know exactly what you want asked/covered.

Yep, today. Today they are putting the permanent crown on one of the ones they worked on a couple of weeks ago, plus replacing two amalgam fillings with composite and removing amalgam from and preparing a third tooth for a crown. :blink: Fortunately one of the fillings is just a tiny little thing...BUT it's in one of my front upper teeth...the other two teeth are molars....the way things have gone for me lately that means my entire head will probably be numb afterwards. :lol::lol::huh::blink:

Gosh Donna--I get scared just thinking about it :ph34r:

Hope all goes well, and your head dosen't go numb :unsure:

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dlp252 Apprentice
dlp252
Posted

Thank girls, lol. Last time he only gave me one numbing shot, but darned if the whole side of my face wasn't numb for HOURS afterwards...couldn't eat well, and well, brushing my teeth was an experience because I couldn't feel my mouth. This time he will mostly likely have to give me a shot both in the back and the front cuz the little tiny filling is in the front tooth. Ouch!! Bet the front one will hurt, lol.

happygirl Collaborator
happygirl
Posted

x

AndreaB Contributor
AndreaB
Posted

Laura,

Good to hear your challenge hasn't been bad.

I hope you didn't swallow the filling. :ph34r: I would think you'd need to get it refilled. You would need to have them run tests (I don't remember what they are called) for compatibility with composite materials before they fill. Some people do have problems with them.

Congratulations on being a new aunt. I love babies. :wub:

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

Anyone who's interested in the gene stuff....I started a thread...its in the research forum.

Good idea Carla.....it should be interesting. :)

Congratulations "Aunt" Laura! :D

Good news about your diet so far....I hope it stays this way...smoooooth sailing. :)

Donna...good luck today with the removal. :)

I think I might be on too much Armour right now. I got a new prescription 3 weeks ago. I went from 60 mg...to 90 mg. I kind of tricked the Dr....said it was my normal dose. :ph34r: I had some kind of bright idea that raising my body temp would kill bugs. :rolleyes:

Usually a new dose shouldnt be bloodtested until 4-6 weeks. I dont think I can wait that long to see if its too much. Maybe I'll just test now. <_<

I think this might be the reason I'm all anxious and cant sleep too well. I only slept 2 hours last night cuz I was too restless, thoughts racing through my head, alot of anxiety and fast heartbeat, a little shortness of breath. This is how I get when I'm hyperthyroid. :(

Normally I fall right asleep....except for this past week. Also I slept in a tank top....because I was TOO HOT. Now that never happens....I am never too hot. :blink:

Me and my bright ideas....now I gotta fix this w/out letting the doc know I tricked her. :ph34r:

While I was tossing and turning last night I was thinking about everyone in Rachelville...

Bev...this thought came to me last night....because I had been reading personal Lyme stories yesterday.

Someone said they had gotten bit but never got sick from it. Then a long time later they became symptomatic after alot of physical exertion... all of a sudden they had Lyme Disease. Maybe wearing out the body lowers resistance??? Anyway...I was wondering if you could have had heat exhaustion and then just never recovered??? Is it possible you could have gotten Lyme before you got sick....like what happened to me???

Does anyone know about Evie??? I am very concerned for her. :(

It's pretty interesting. I'd be curious to know what you LLBM (Lyme Literate Board members- no not Lyme Literate Bowel Movements :ph34r: ) think.

:lol::lol:

Thats funny Bev...

I'll check out the links. :)

can lyme's disease cause joint pain? I have struggled with joint pain for two years. No test shows why that is. My old lyme test was negative. Do you know if lyme can cause joint pain? I have ordered the ignex kit.

Yes...joint pain is one of the more common symptoms of Lyme Disease.

jerseyangel Proficient
jerseyangel
Posted

Hi Laura,

I'm so relieved that your reaction wasn't too severe! Congratulations on your new niece :D

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

Hawkfire..

This was from the link that Bev posted

Among untreated patients with LD, arthritis can ultimately develop in up to 60%. The joint swelling, which may or may not be painful, frequently is episodic, recurrent and migratory if multiple joints are involved. Any joint can be affected including the TMJ (temporomandibular) and small joints of the fingers (contrary to earlier reports). Up to 10% of untreated LD arthritis can develop into destructive/deforming synovitis almost identical to Rheumatoid Arthritis (RA). Dr. Lavoie has published the coincident findings of LD with RA, and SLE (lupus) with LD. The SLE was associated with positive DS-DNA (double stranded DNA) which is considered diagnostic for lupus. This marker improved with antibiotic treatment for the LD. The author felt that the LD might be causing/aggravating the SLE.
HawkFire Explorer
HawkFire
Posted

does this mean that if the ld is treated, the potential for developing ra is diminsished? Is it that ra is the outcome of untreated ld?

also, where is this full post? Is it from a cited article I can bring my dr? Please give me a link.

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
does this mean that if the ld is treated, the potential for developing ra is diminsished? Is it that ra is the outcome of untreated ld?

It *can* be the outcome if LD is left untreated. It wouldnt happen to everyone because Lyme doesnt affect everyone the same. If treated then yes.....the potential for developing RA would be diminished. It also depends on how long the LD went untreated and if there is permanent damage. I think in most cases there would be significant improvement with treatment though.

From Bev's post...

Has anyone read this article When to suspect Lyme Disease by Dr. Bleiweiss:

Open Original Shared Link

and the story of Dr. Bleiweiss:

Open Original Shared Link

dlp252 Apprentice
dlp252
Posted
x!

Congratulations auntie!!! :D Glad you haven't had too bad a time yet with your challenge! About the filling...yep, I agree with Andrea...hope you didn't swallow it and it probably definitely needs to be replaced. I might be too old...I had to have all my original amalgams refilled about 6-10 years ago cuz they were all really old. One of the reasons why I'm so certain I have a mercury problem. <_<

HawkFire Explorer
HawkFire
Posted
It *can* be the outcome if LD is left untreated. It wouldnt happen to everyone because Lyme doesnt affect everyone the same. If treated then yes.....the potential for developing RA would be diminished. It also depends on how long the LD went untreated and if there is permanent damage. I think in most cases there would be significant improvement with treatment though.

I have this joint pain for two years on and off. I have been tested for lyme. I have been tested fro mycoplasmas and lupus and ra and parvo and epsteen bar and more that I know nothing of. I am negative in all respects. But perhaps my lyme test was not a good test? I emailed for a test kit from ignix labs but they have not emailed me back. Will they let me know that my request has been processd? Do you have that link again so that I may ask them this myself? I cannot locate it in the flood of posts.

Also, it appears my joint pain is not associated with any dietary choices I make. It simply comes and goes. Not with my hormones either. But I have no fatigue. One doctor told me I have fibromyalgia with very few symptoms. I took that to heart fro a while. Then I began to believe it was not fibromyaliga. My only symptoms appeared to be joint pain that came and went and could be quite severe and several trigger points. Not nearly half of the trigger points, though. Only 5 or 6. So, I do not believe it is indeed fibromyalgia. I prefer to see this as a virus. I have children so the likelyhood is that I have come across a virus that has remained with me.

dlp252 Apprentice
dlp252
Posted
does this mean that if the ld is treated, the potential for developing ra is diminsished? Is it that ra is the outcome of untreated ld?

also, where is this full post? Is it from a cited article I can bring my dr? Please give me a link.

It must have come from this one:

Open Original Shared Link

And the Igenex link:

Open Original Shared Link

HawkFire Explorer
HawkFire
Posted

I have checked my email again. There is still no response from igenix that they have recieved my request for a testing kit for lymes. I must have done something wrong as it has been several days now. Could someone please tell me the link to the kit ordering service once again?

Thank you for the link. I emailed them the first time. Is this what I'm supposed to do>? I ask only because it doesn't appear to have worked the first time.

I just rang them on the telephone. I don't know why I chose to email them to begin with.

Anther thing I am thinking. I thought lyme was only a deer tick thing you could get on the east coast. Not on the west coast? Is it very much on the west coast as well? I was surprised to be tested for lymes to begin with.

CarlaB Enthusiast
CarlaB
Posted

Hawkfire, good to see you in Rachelville! I ordered my Igenex kit over the telephone ... maybe you'd have better luck that way.

Laura, seems funny to say, glad you were "only" sick a couple times :blink: At least enjoy all the flavor! Congrats on being an aunt again!

Donna, glad you are progressing through your dental work.

Hope everyone is doing well today. I'm feeling so much better with the salt/vitamin C that I got out a bit today! Thank you for telling us about that Rinne.

HawkFire Explorer
HawkFire
Posted

I am thinking of the viruses I've been exposed to in the past years that I am aware of. I know I had epstein bar, mono. Is there a test like the one from igenix that tests for a chronic case of mono? I want to get the best test not a junk test. I know my children had fifths disease in elementary schoool a few years ago. I read that adults can get joint pain with that virus. I never had a rash. I would like to know of a test kit that is reputiable for the fifths disease virus. I had a second round of chicken pox as a 20ish person. Could I have a chronic case of chicken pox? Isn't tha trelated to herpes? I have no sexually transmitted diseases, though. I cannot think of any other viruses that I am aware of being exposed to. I never considered lyme becasue I am in california where I thought lymes woul dbe very rare. I didn't know lymes could make your joints hurt. I have no fatigue either and havce only tested negative for all things I have been tested for. I am very confused right now. My rheumatologist assured me I mearly have a reactive arthritis. But I was not satisfied that a reactive arthritis would come back again and again and aagain. It has been pain free in my body for a month. Now last night it began to creep back into my hands. i feel the pain beginging again. I dread it.

CarlaB Enthusiast
CarlaB
Posted

Hawkfire, the Ingenex kit comes with a list of all their tests so you can decide after you receive it. You don't pay for it until you send it in.

I don't really know the answers to your questions. I had terrible TMJ pain (which is why I wear braces, it's the last stage of treatment), I also get shoulder pain (it's like my clothes are too heavy), neck pain, pain in my right knee, and pain in my thumb joints. This can be symptoms of Lyme ...

dlp252 Apprentice
dlp252
Posted

I don't know the answers either as I haven't yet been tested for Lyme.

I, like Carla have developed TMJ although mine isn't as advanced as hers is, shoulder and neck pain on the left side, pain in my right knee and hip...don't have thumb pain, but have pain in my right big toe and in my right wrist.

They just called to cancel my dental appointment! Doc got called away on an emergency. That means I have to wait until next week! Good and bad, lol. :lol:

AndreaB Contributor
AndreaB
Posted
They just called to cancel my dental appointment! Doc got called away on an emergency. That means I have to wait until next week! Good and bad, lol. :lol:

Gives you more time to take the stuff the doctor gave you and start on Vit C after your stool test. :)

Green12 Enthusiast
Green12
Posted

Oh Donna, I was just going to give you another good luck wish that everything went well at the dentist today :lol: Guess it will have to wait. I agree with Andrea, it will give you a chance to get the Vit. C going in your system :)

Welcome HawkFire :) Honestly, I can't remember if I already welcomed you or not :ph34r: , lots of activity in Rachelville and I haven't been able to keep up :lol: I don't know much about lyme myself but I hope that the others can answer all your questions or direct you to the appropriate places :)

The Igenex link once again for you or anyone else that might be lurking and interested:

Open Original Shared Link

Congratulations Auntie Laura :) Wonderful news about the birth of your niece Katie, cute name! I'm so glad you didn't get too terribly sick with the food challenges so far, I hope it stays that way :)

Bev, look at you with all the scientificness :lol:

Thanks everyone for all the links and great info, I have been just reading away.

Nikki, forgot to say pages ago, LOVE the new picture!

Hope we hear from dear Evie soon.....

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      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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