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Avatar universal

Just Curious.

Hi everyone,

I'm going to post my symptoms shortly about myself, but waiting to get back all my tests and sleep study before doing so.

In the interim, to the person who has negative Lupus testing and told possible Lyme disease, there are 10 bands related to the blood test for Lyme disease to which you would need to have 5 positive. At worst 3 would send signals that something Is wrong.

I'm just curious to know because you have issues swallowing, did they ever test you for Myasthenia Gravis? AKA MG part of the muscular dystrophy family.? Your symptoms sound like Lupus to me, but, have they ruled out MG?  

Myasthenia Gravis has things such as Vision related issues as well as swallowing, fatigue, weakness in the arms and legs. It can also effect breathing.

I mean you've come this far. Why not.

I think you have something happening related to an immune disorder and with your family history this does not surprise me at all.

Warm regards,
C
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Avatar universal
I'm so sorry to hear about the loss of your mother.  My mother was about the same age as yours when she died, at was far, far too young.

About your comment "the Rheumie doc I just went to has put me on Doxy because she feels strongly that it's Lyme":  

it's good that the doc has an open mind about Lyme, but be aware that doxy is not, from what I read, particularly effective unless given very very soon after the initial infection.  It takes other meds to break through the biofilms the Lyme bacteria create not long after infection. It's one of those things rheumatologists don't key into the way an LLMD does.
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Avatar universal
Hi and I agree that you should do you own research especially regarding Lupus and Lyme.

Your results for the C3, C4, RBC and WBC are all normal.

Did you do the mono spot test for EBV or do you have the results for the Early antigen (EA), Viral Capsid Antigen (VCA),  EBV Nuclear antigen (NA)?

The EBV IgG will be positive for life one you have been exposed.  about 80-90% of adults have EBV IgG antibody. Some have Chronic EBV which causes chronic fatigue.

With Lupus you would get flare up of symptoms with sun exposure for one thing. Do you notice any sensitivity to the sun?

MS would have shown up on your MRI according to my neurologist if you had symptoms like you have.

I would check the tests I mentioned also the Lyme tests.
mkh9

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Avatar universal
Jackie,

Thanks fir the information. Actually, the Rheumie doc I just went to has put me on Doxy because she feels strongly that it's Lyme in spite of the 10 band test to which you indicated. Had had seen at least 3 other Rheumies over the years and they all said its Fibro including the big shot in a top Manhattsn hospital. Bit two of them wanted to retest my bloods before absolutely confirming Fibro. That was years back.

That's why when I started feel terrible. Or should I say worse than before, once my new insurance started I began seeing doctors.

I'm a conservative person by that I mean even if a doc said I had Lupus and wanted to start me on any related medicines I would not hold my nose and just jump in the water. If first do more research on it and still get other opinions.

In answer to MK's questions about my complement C3 and C 4.

Complement C 3  - 113
Complement C4 - 26

Ebstein Barr- Positive.

Anti-histone - ABS 0.9 Unirts.
The rates are from 0.0 to 0.9

RBC 4.81
WBC 7.48

You know what's funny about Reuhmie docs?  When I took my mother to one back in 1994 the doc said she had terrible arthritis. Almost two hours later after being given a courtisone injection in her hand she colapaed outside the house was taken to a local hospital and later diagnosed with Myasthenia Gravis. The rest is all history now. She passed in 2000 at 62.

Medical Science is an art not an absolute. Sometimes we have to step outside our protective shells and do our own research. If I listened to every doc about their opinions I'd be 6 feet under by now. I'm going to keep focused and find out what's going on. One way or the other I can't allow whatever is happening to continue its assault.

Thanks for listening.

Warm regards,
C
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Avatar universal
PS  I just noticed that the quote I pasted above from the NYT was incomplete in one place -- the full quote is below, along with some more of the article:
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NYT:  "Often misdiagnosed and mistreated, chronic Lyme disease leaves thousands of people physically and mentally debilitated and without a medically established recourse.

"[Patient's name], 51, a New York lawyer, experienced 'a series of ailments going back 10 years.' She was finally given a diagnosis of chronic Lyme disease last summer after having been told that she had multiple sclerosis."

My comment:  

If you read the entire article, please keep in mind that the article, although trying to be even-handed, includes a fair amount of the usual non-LLMD, approach to Lyme, and gives only brief mention to the views that LLMDs have.

For example:  

NYT:  

"Still, after several months on antibiotics Ms. [patient's name], like many similar patients, said she felt 'completely healthy for the first time in years. Each time she tries to stop the medication, her debilitating symptoms return."

My comment:  

The patient may not have been fully tested for other infections that 'Lyme' ticks often carry, and she may have not been treated for Lyme long enough with the right meds to reach not only the active bacteria but also Lyme that is hiding in slimy shields called 'biofilms' that help the bacteria hide from the immune system.
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Another sample from the NYT article:  

"Reports like Ms. [patient's name]’s are hardly unusual, and experts now realize that some people who get Lyme disease go on to develop a chronic illness even if their initial infection was promptly diagnosed and correctly treated. Approximately 10 percent to 15 percent of people who are treated for medically documented Lyme disease develop persistent or recurrent symptoms of fatigue, musculoskeletal pain and cognitive complaints."

My comment:  

A Lyme doc might say that the patient was not treated long enough with the right meds.  So-called mainstream docs tend to treat with a few weeks of doxycycline, which is often not effective against co-infections (other diseases that the 'Lyme' ticks often carry in addition to Lyme itself).  

Also, at some point not too long after infection, the Lyme bacteria hide themselves in slimy shields called 'bio-films' that prevent the immune system from finding the bacteria, and what can't be found, can't be killed.
------------------------------------------------------
The NYT article continues:

"The condition is known as post-treatment Lyme disease syndrome, or PTLDS. 'It is a real disorder, although nobody really knows what’s happening,' Dr. John N. Aucott, an infectious disease specialist in Lutherville, Md., said in an interview."

My comment:  

Yeah, doc, nobody knows -- except the Lyme specialists.  Note that the doc quote there is an infectious disease (ID) doc ... and they are among the biggest bunch of 'Lyme deniers' in the medical profession.

Another aspect the Lyme-deniers overlook is that Lyme also has a very slow reproduction cycle compared to most bacteria (20 minutes for regular bacteria vs a month for Lyme, from what I read).  It is when the bacteria's cell membrane is disrupted as the bacteria split into two that the antibiotics have the best shot at killing the bacteria -- the castle gate is open, and the antibiotic weapons can shoot the bad guys inside the castle/cell.  

So the two weeks of doxy most docs prescribe for 'Lyme' may fail because

  --  the antibiotics can't get through the biofilm to kill the bacteria without an additional 'cyst-buster' medication,

  --  the slow reproductive cycle of Lyme compared to other bacteria give many fewer opportunities for the immune system and the medications to attack and kill the bacteria, and

  --  the co-infections (babesia, bartonella, etc) may not all be susceptible to doxy
------------------------------------------------------
The NYT article continues:

“ 'A lot of patients have been told they’re not really sick, just tired or depressed,' he added. 'But this is not normal fatigue, and it’s not caused by depression — although depression certainly can result from the patient’s seriously diminished quality of life.'  

"Antibiotic therapy for PTLDS is based on disputed reports that these patients may harbor hidden reservoirs of the spirochete causing Lyme disease, Borrelia burgdorferi, long after their initial treatment. But researchers who have studied the therapy have found it of little or no benefit, and many say the regimen is fraught with hazards that could be even worse than the illness. ..."

My further comment:  

Yeah, doc:  get yourself a dose of Lyme and see how you do with your own treatment.
--------------------------------------------------------------------

Okay, enough from me.  Sorry for the data dump.  If it's too much, read it another time.

Best wishes!  J.
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Avatar universal
Thanks!
mkh9
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Avatar universal
Thanks, I've been around. Also I am the CL for the infectious disease site so I've been busy with that site. I also got injured (knee) and a blood clot on vacation and I've been so tired. You guys are so much more knowledgeable about Lyme I just add my 1 cent once in a while.
Thx,
mkh9
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1763947 tn?1334055319
Glad you are back. Missed you!
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Avatar universal
Above you say, "there are 10 bands related to the blood test for Lyme disease to which you would need to have 5 positive."

This sounds like something a non-Lyme-specialist might say.  The Lyme tests commonly used, ELISA and Western blot, were given especially high standards to meet for a positive diagnosis of Lyme.  The reason was that the testing was *not* supposed to be used to diagnosis or rule out a Lyme infection -- instead, the testing was for *research* purposes to track the spread of Lyme disease.  

To be very sure that a positive Lyme test REALLY was Lyme, the researchers required a high number of positive 'bands' on the test to achieve a diagnosis of Lyme.  For research, that keeps the data pure, but for humans with Lyme, it means some truly infected people get missed -- partly because Lyme bacteria have the ability to tamp down the human immune system.  That means you can have a true case of Lyme, but the test could still be marked negative.

There is a split in the medical community that has some docs (often those in the infectious disease and rheumatology fields) who hold to these too-high standards, and on the other side are more progressive thinkers sometimes called LLMDs for short ('Lyme-literate MDs') who can be any kind of doc, such as a general practitioner or an immunologist (or even a stray infectious disease or rheumatology doc who have seen the light).

These docs who understand Lyme at the patients' level also know that if you've been infected for a long time, doxycycline may not work, because the Lyme bacteria can create slimy shields called biofilms where they can hide from the immune system.  What the immune system can't detect, it can't kill.

So ... your rheumatologist may not have a broad view of Lyme.  Rheumies are often very hard to convince that a patient has Lyme, and they default to another diagnosis like 'fibromyalgia' -- which is doc-speak for 'we don't know'.

I would, in your situation, go back and see what the rheumy has to say, and be sure to get copies of all the test reports to take with you ... and then go get a second opinion from a Lyme specialist.  You don't need to tell the rheumie you are doing so, and I would tend not to -- because some so-called mainstream docs think LLMDs are quacks.  I happen to think the problem is with the rheumies ... but then I was diagnosed and treated by a progressive-thinking doc who truly understands Lyme and its co-infections and how to get rid of them.

Widen your horizons before you settle on a firm diagnosis, and I don't say this lightly.  Take care!
-----------------------------------------
and PS, there is some thought that Alzheimer's is Lyme-related too.

I just searched online for -- lyme "multiple sclerosis" -- and found some very interesting links, inlcuding one that says:

"Often misdiagnosed and mistreated, chronic Lyme disease leaves ... disease last summer after having been told that she had multiple sclerosis ..."  
This is a clip from an article titled, 'When Lyme Disease Lasts and Lasts' printed in the New York Times on 8 Jul 2013.  Those radicals at the NYT!!!  [not].
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I know you are carrying a lot, but the burden might be lifted by finding an LLMD for a work up.  It is what I would do.  

Keep us posted, and let us know how we can help.  If you need a referral to an LLMD, you can email to  -- contact  [at]   ILADS.org -- and tell them where you live ('near Topeka KS' or whatever) and how far you can travel.  
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Avatar universal
Where have you been?!  Glad to see your post.

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Avatar universal
Sorry you are going through all this and all the loss. It is hard. First I just want to say that regarding Lupus, just because you have a positive ANA doesn't mean you have Lupus. There are at least 6 tests you need to have positive before accepting a diagnosis with that. Lyme can give you a false positive ANA as well as other diseases. So,  you need further testing to be diagnosed for Lupus. anti DNA is one of them. Problem is only about 50-75% have the antibody. But if you have it is diagnostic. Same thing for the test anti smooth muscle antibody only 30% have them but if you do then it is confirmatory. If you have it with the positive anti DNA test then you probably have it. Also, get the complement tests CH50 and C3 and C4 to see if they are low. In lupus they usually are low. And anti RNP antibodies that is antibodies against your Ribonuclear protein. With a complete blood count usually if you are actively ill your platelet count and white blood cell count will be low and that is without treatment. The drugs will lower these so you can tell if you are being treated with Lupus drugs (not the doxy). I mention all this about Lupus because I don't want you to get treated for Lupus unless you are certain. My friend was misdiagnosed and now she has gone blind from being treated with plaquenil. So, now she is on no treatment and had been told by her dermatologist all she has is rosacea. This is after 30 years of being treated for Lupus both discoid and then systemic. Now is doing quite well and off all drugs. As for the HBsAb positive did you have the vaccine? This means you are immune to hepatitis.  The ESR or sed rate is a non specific test for inflammation and infections. Your vitamin D is very low. I would start with 1000mg of a vitamin D supplement and go back and get retested in 3 months. If it is too high go down, or too low try 2000mg. Retest again in 3 months. I take 4000 a day and so does my husband. Actually I started out with 1000 and it was ok for a while and then about a year later I needed more so you have keep getting tested to make sure you get the right level. For women is should be about 60 for good bones. My doctor said it should be on the high end. That may be part of why you are tired. Have you had your thyroid tested (TSH) that will also make you very tired if the thyroid is off. So you should also get tested for Lyme especially if think you may have been bitten by a tick. If you don't know but want to get tested you should see a LLMD or (Lyme Literate MD) in your area. You can find one by searching on www.ILADS.org they will send your blood to a very good lab that has sensitive and specific tests unlike a lot of the labs that are out there. They also know that not all people have a target rash. So it would be good to stay on the Doxycycline and get tested for that as well since you don't know what is making your ANA positive. I'm not sure about the low T in your case. Hope this helps.
mkh9
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Avatar universal
Hi MK.

Back again, with info. Met with my rheumatology doc two days ago. Here is the breakdown:

Bands 23, 39, and 41 Igg positive
Igg band 93 positive
EBA ab/Igg - positive
ANA screen positive
ANA Titer - 1:329 HI
ESR- SED rate 35 HI
HBsAn positive
Vitamin D 16.8 LO
Testosterone Free - 6.32 LO

I started feeling fatigue since 1996, The overwhelming exhaustion has progress in the last two months.
Three months ago sudden numbness, tingling and left sided head pain. That dissipated since

Extreme joint and hip pain over the past three months. Recent xray indicates mild arthritis in hips more left sidestep right.

Recent MRI and MRA studies negative
MS and Myasthenia Gravis run in my family. Kilter diagnosed at 62 died at 67
My younger Sister diagnosed with MS 10 years ago
Two cousins on my mother's side one with MS and one with MG both passed Many years ago.
Father passed at 77 from Alzheimer's.

So, is it Lupus or lyme Disease or both.

Now being treated with:
Doxycycline 100MG cap twice daily
Vitamin D Pharma VIT D2 1.25 MG 50 4 weeks.

Your thoughts please.

Warm regards,
C





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Avatar universal
Hi, did you mean to write on the Lyme forum?
mkh9
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