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.
Posted by Keebler (Member # 12673) on :
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 -
Posted by Keebler (Member # 12673) on :
- 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." -
Posted by Keebler (Member # 12673) on :
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. -
Posted by Lymetoo (Member # 743) on :
Yes. I have it. Highly positive test. Lyme probably caused it.
Also have Raynaud's .. likely from Lyme.
Posted by Keebler (Member # 12673) on :
- 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.
Search LymeNet Archives for past posts on Sjogren's and you will see that many were misdiagnosed.
Search for "Mayo" and you will find many who were misdiagnosed there, too. -
Posted by one4islands (Member # 28187) on :
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).
Posted by nefferdun (Member # 20157) on :
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??
Posted by Lymetoo (Member # 743) on :
Well, one thing for sure.... there isn't much they can DO about Sjogren's... so what good is the diagnosis?
If you end up with the systemic (progressive) variety, then they give you steroids. Oh, great.
Posted by missing (Member # 22437) on :
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.
Posted by sk8ter (Member # 8671) on :
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.
Posted by Lymetoo (Member # 743) on :
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!
Posted by karenl (Member # 17753) on :
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.
Posted by D Bergy (Member # 9984) on :
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
Posted by Haley (Member # 22008) on :
I have Sjorgen's syndrome. I think it has gotten better with treatment.
Posted by Shahbah (Member # 28735) on :
Also, I think you should check for your hormonal glands (adrenal, thyroid, pituitary), there may be some disfunction that creates the dryness...
Posted by TF (Member # 14183) on :
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.
Posted by Rumigirl (Member # 15091) on :
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.
Posted by TerryK (Member # 8552) on :
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
Posted by karenl (Member # 17753) on :
D Bergy is right, LDN is great for Sjogrens but start slowly.
Posted by BHealthyNow (Member # 22537) on :
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.
Posted by sewingsowandsew (Member # 29126) on :
I was diagnosed with sjogrens a year ago this May. Had western blot Nov. Positive for IgG 41 and 23.and IgM 23. Have been reading here alot.
Family doc had scheduled followup with rheumy. they say good. Dec 13th. Have found a Ilad Doc takining new pt. Appointment not until 3-1-11.
Do I keep Family Dr appointment with rheummy?or just wait until march 1 for new Doc. Am on waiting list for cancellation appointment
Not doing anything for sjogrens at present. Am taking supplements and detox. Some hot tubbing and water exercises.
After reading thinking I need more tests for strep titer and detox more first. And wait for Ilad appoint.
Checking what you guys think. And is there anything I should be doing until then?
Posted by Lymetoo (Member # 743) on :
Hi there !! You may get more replies if you begin your own thread... Look for "Post New Topic" up above on the right.
Personally, I would avoid the rheumie! They will tell you all kinds of things like "you couldn't possibly have Lyme."
If you get on the other doc's cancellation list you will likely be called before March.. I hope!!
a strep test might be good and then get your gut ready for antibiotics by cleaning up your diet (if need be) and going on high quality probiotics.
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