posted
A recap. I saw the ID dr. before my LLMD appt.
The ID ordered a Mayo lyme test that came back negative (everyone here said it would). He ordered about 18 other extensive labs on me and thinks I have some sort of vascular collagen disease going on.
He once again did not rule out Lyme completely , but he said he doesn't feel like it is Lyme due to the initial WB. He said he would be fine w/ rechecking again in a few months.
He has consulted a rheumatologist regarding my labs and set up an appt for me. They think I could have Sjogren's disease. I have some of the symptoms, but I am questioning it.
I have a dry mouth and my lips burn sometimes. I don't have trouble producing saliva, no dry tears issues though sometimes my eyes burn. Dry eyes, no tears, no saliva and dry mouth are two biggest symptoms along w/ joint pain/stiffness.
At a recent dentist visit when I normally have an easy checkup and they always rave about how clean and tartar free my teeth are the tech spent a bit more time working on my teeth saying that autoimmune diseases can cause this.
I now used Biotene mouthwash and paste.
So, long story short do any of you out there have Sjorgen's. I suppose I could have it on top of the Lyme.
I will have to check out a Sjorgen's forum to see what other symptoms there are.
Posts: 412 | From Virginia | Registered: Sep 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
Most often, Sjogren's IS lyme (it was for me) - &/or side effects from certain drugs. Check all your drugs online. Many cause dry mouth, especially the antidepressants used for sleep in "fibromyalgia" - and they can destroy teeth due to dry mouth.
Biotene mouth wash has Propylene Glycol, a petroleum product that has been linked to cancer. And who knows what this is: Hydrogenated Starch? Etc. ---------
Anything with a "syndrome" name is just a collection of symptoms. All those symptoms go with toxic infections and stressed bodies from dealing with infections.
" vascular collagen disease" - lyme CAUSES that.
"autoimmune diseases" are far too often really lyme. Lyme can wreck the immune system in a variety of ways and create what looks like to the uneducated eye, "autoimmune" when really, it's the immune system trying very hard to fight the stealth borrelia &/or damage from borrelia, itself.
I'd not waste time on ID doctors or rheumatologists or looking for syndromes by those who will never even consider the many ways lyme changes the body - as described here: ----------
Right side menu: XyliMelts for Dry Mouth -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Sadly, due to the Mayo test, you may not be able to get any coverage at all for lyme treatment if you are diagnosed. They will not count subsequent tests and may not reimburse for Igenex testing once the Mayo tests have already been paid for by insurance.
Did you have ANY positive bands at all, or even IND bands on the Mayo tests? Be sure to get your personal copies for your own file.
Too bad you didn't see this before as, if you do have lyme, you might have been able to get some insurance coverage. But, now that MAYO has declared that negative, you will likely have to cover on your own any lyme expenses.
I do hope you don't have lyme, but only an ILADS-educated LLMD is the best to properly assess you. Other tick-borne infections and other chronic stealth infections will also be considered by a LLMD.
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM." -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
You said: �I tested positive for Lyme (WB) in August.�
19 November, 2010 - you wrote:
" . . . Mayo's Lyme WB negative. It didn't even report any bands. . . ."
On the flip side, you also said:
" . . . Saw LLMD today and yes, I have Lyme and we are starting treatment. . . ." --------------------
Why did you not continue with the LLMD, then? It's confusing.
I can't sort though all your links but I just have to ask, why, if you had a positive WB in August and you saw a LLMD in November, why, oh, why are going back to ID doctors and rheumatologists?
You have symptoms, you had a positive WB and you want to believe the ID doctor who said that was "false positive" - and believe Mayo, which has been pointed out before that do not do the correct tests --
Well, you can follow the syndromes or treat the cause(s).
There are no false positives with lyme. A whole WB was positive. That speaks volumes. You did not need ANY other test after that, not for lyme. But for other tick-borne infections, yes.
Good luck. I hope you choose to address the cause rather than go with the umbrella syndromes. I've was stuck under those syndrome umbrellas for years. That did a not of harm. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Yes. I have it. Highly positive test. Lyme probably caused it.
Also have Raynaud's .. likely from Lyme.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I know you can't hear tone but you may detect some frustration with my note above. It's just that so many of us here have been lead down the "syndrome" and "autoimmune" paths by ignorant doctors.
We try very hard to help others avoid years of devastation, pain and missed dreams. We try to arm you not just with our experiences but with good solid links by legitimate lyme literate authors.
And when all that is ignored, frustration does swell. My own lost years cloud the picture. I don't want you thinking I'm bullying you but I am being emphatic, so if my posts seem to be shouting, please know it is not a personal affront aimed at you but hoping that you can have all the information.
posted
I appreciate all of the feedback, especially in regards to the Biotene.
I just bought a new bottle today and will be returning it ASAP.
I glanced at the ingredients upon initial purchase and was shocked, but didn't want my teeth to deteriorate either. I honestly don't think it's helping w/ the dry mouth.
I had this dry mouth before any medications were started so it's not from them, but I believe caused by the Lyme and whatever else I have along w/ it.
I am seeing the LLMD dr. He is aware of my appt. and blood test results from the ID dr.
I did not tell the ID dr. I saw a LD. I saw the ID dr. prior to the LD so I was curious to see what would become of all my tests.
I am sure that all of this is due to LD and will continue to see the LD dr. I have only been on my abx for one week now and am awaiting blood work ordered by him (LLMD).
Posts: 412 | From Virginia | Registered: Sep 2010
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Before my diagnosis one of my worst symptoms was dry irritated eyes that were so blood shot and sensitive I had to wear sunglasses in the house.
The GP and eye doctor I went to both said I had sjogren's. I had already researched the dry eyes on the internet so I knew I did not fit the symptoms because I did not have dry skin or dry mouth. I argued this telling them my dentist wore a mask to protect himself from my overactive salivary glands. Made no difference.
After diagnosis all of my symptoms but the dry eyes would wax and wane. The only thing that helped was taking collagen in the form of hyaluronic acid. A good brand made them feel normal if I took it every day.
But I went to the LLMD two weeks ago and he also suggested, in reference to my dry eyes, that I have sjogren's. He even did a test for it!! This is supposed to be a great doctor so who can you trust?
He said none of the infections cause dry eyes - but how many people on here have complained about dry eyes??
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
The same thing happened to me. They had no idea what was wrong, so they gathered all the symptoms, and guessed that it might be some syndrom or some type of disease.
They said they couldn't help me and sent me home.
The meds they gave me just adressed the symptoms. No cure.
Then I started my Lyme treatment and many symptoms resolved in a matter of weeks, some in months and some I still deal with.
The longer you ignore Lyme, the more severe it gets and the harder it is to treat.
I agree with everyone else that replied to your post.
Let us know how you are doing.
-------------------- I am not a doctor. I have no clue. Posts: 606 | From somewhere out there | Registered: Sep 2009
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posted
Please go to Roadback Foundation site and you will see many people that have Sjodrens, Scleraderma etc that are on the Harvard protocol for these diseases ...all ABXs.....there are many who were diagnosed and then found out their were lyme positive.
Posts: 871 | From orange county, ca. | Registered: Jan 2006
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I tested positive for ehrlichia and not knowing much about it, I did some online searching. What came up most often was ehrlichia in dogs. As it advances it causes bloodshot eyes.
We can't ask the dog if it's eyes are also dry and irritated but I would presume blood shot in a dog's eyes feels pretty much the same as blood shot in mine. If fact, doesn't red mean irritated?
Perhaps I will test postive for sjogrens. My mouth has become drier during my relapse over the last couple of months, but the cause is a tick born infection. It is not an out of the blue unrelated condition!
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
one4islands,
I know Mayo. You are not attacking yourself but your system is trying to kill invaders. They can be lyme. I think they can be also parasites, strep, staph...cpn...or all of them together.
In my opinion it can be any invaders your system needs to kill. Sjogrens just gives you a hint that it might be in the connective tissue. Yes Lyme has to be ruled out and all the others as well. Did you have mold exposure, it does Sjogrens as well.
You cannot take steroids or immune suppressing meds.
Posts: 1834 | From US | Registered: Oct 2008
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D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
Low Dose Naltrexone is used to treat Sjogrens Syndrome, and can be used as a Lyme treatment.
I would not count on the Sjogren's diagnosis anyway. It may all be directly or indirectly a result of the Lyme Disease.
You will not know until it is under control.
Good luck
Dan
Posts: 2924 | From Minnesota | Registered: Aug 2006
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
I have Sjorgen's syndrome. I think it has gotten better with treatment.
Posts: 2232 | From USA | Registered: Aug 2009
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posted
Also, I think you should check for your hormonal glands (adrenal, thyroid, pituitary), there may be some disfunction that creates the dryness...
Posts: 723 | From Montreal | Registered: Oct 2010
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
When I had undiagnosed lyme disease, I got very dry eye. I had to see an eye doctor for it. He wanted to plug my tear drains.
I also got very dry mouth. I had to see a dentist for it. He gave me the Biotene which I had to use faithfully to keep terrible bad breath away, caused by lack of saliva. My mouth was so dry at night, I couldn't go to sleep. Took to sucking on a hard candy in bed to avoid the feeling of dying of thirst in a desert. Wherever I went, my water bottle went with me. And, I mean everywhere. I was constantly sipping on water to relieve this extremely dry mouth.
Lyme also dried up my other mucous membranes in my body. It was terrible.
I never had any joint pain or stiffness, so maybe that is why nobody said I had Sjorgren's. I had extreme muscle weakness instead. Good lyme treatment got rid of all of these symptoms.
I completed my lyme, babesiosis and bartonella treatment over 5 1/2 years ago and I am still symptom free, enjoying my life. I have the same life I had before lyme disease.
Eye doctor says I have very young eyes, too. Said she wished she had my eyes. I don't need glasses to read.
So, that's my story. Hope it gives you peace of mind that lyme disease can definitely cause all of this havoc.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Yes, I was dx'd with both Sjorgren's and Raynaud's way back in '89 by a Rheumatologist---way before I knew that I had Lyme.
I've had the symptoms of Raynaud's since I was really little (always got frost bite, blanched hands and feet)---still have it.
I've had dry mouth/unquenchable thirst for about 35 years!!! Really severely. And it just got majorly worse. When I just went to the dentist recently, I was shocked to discover that I had FIVE cavities, when I usually have none or very little!!
And, I discovered that I have dry eyes, too. I just knew that they bothered me, and it felt like I had stuff in them that I wanted to wash out. Sigh.
I just started aggressive treatment again recently. I really hope that it improves. But I've had it all for so long, so it's likely to be a very long road. In spite of treating in recent years.
I'm sure it's all from the Lyme and co-infections and collateral damage. Unreal how I, and millions of others, went undiagnosed for so long, when I was desperately looking for answers.
And, I've had terrible joint damage for decades, too. That's what sent me to the rheumie way back. A lot of help that was---NOT.
Posts: 3792 | From around | Registered: Mar 2008
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
My fibro doctor thought I had sjogrens but wanted to do a biopsy (I think on my lip). I told him no.
My dry eyes got so much better with treatment for lyme. Autoimmunne issues are often seen in lyme.
Listen to Keebler. Get back to your LLMD. As lyme progresses it can get a LOT worse.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
D Bergy is right, LDN is great for Sjogrens but start slowly.
Posts: 1834 | From US | Registered: Oct 2008
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posted
I also think that cranial nerve impairment can cause some of those issues. I've had Bell's Palsy, and when it flares a bit, I notice dry mouth and drier eyes. For me, it's completely Lyme related.
-------------------- Lyme, Bart, possible Babs Currently on IV Doxy, Bactrim, Zithromax, Nystatin, Mepron Been on nearly every antibiotic since 10/09
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