lyme or lupus or sjogrens?

I had the tick bite, the rash, the flu-like symptoms.  I started aching weeks later and when tested had a positive ANA of 1:64.  I then saw a  rheumatologist and was tested and came up positive on the SSB (La) Antibody test (3.5).  Which diagnosis seems most likely with only those two tests coming back positive?

[winfree]

I can not help you with diagnosis. Educate yourself reading websites about these. Lyme would seem highly likely with the tick bite, rash, flu symptoms and aching. Lyme loves the joints and muscles, or central nervous system. Here is my story and opinions.

I had neurological Lyme Disease, late disseminated, severe, stage four.

I lived in NY by Ithaca in 93-95; I got very ill in 2002 (living in AZ), much later than I was likely to have contracted lyme. It hides, and can evade the immune system for years.  Accurate diagnosis, lyme, and thus appropriate treatment , was not made for 3.5 years.

It was in my central nervous system. My face and neck pain, and overwhelming fatigue were my starters. There is no certain path or course that symptoms take  for the disease, making it hard to diagnosis. I had difficulty sleeping, walking, talking, thinking, extreme depression and sensory sensitivities by one year. Yes, I stuttered and speech became very labored. The dr.s who should know better wrote me off (probably they could not diagnosis, even at a renown tertiary clinic) and told me it was psychiatric problem. My husband believed they were right. Did you know only 1 in 4 marriages survive when one spouse has a chronic illness?

Have done much reading, lyme conferences DVDs, and searching for dr.s who might know diagnosis. My lyme test was negative, so we dismissed that idea, for too long. Many years later have learned the tests are so inaccurate, may stay negative until adequate antibiotic treatment, and for some stay negative forever.
It is a diagnosis that should be made based on clinically symptoms. Yes, all of  my other testing was negative, including lyme tests. My dr. specializes in chronic fatigue, and so attends conferences on such, which now include lyme. Lyme is considered the next great imitator, as syphilis was the first. Because lyme can be so devastating, the earlier the antibiotic treatment starts the better.

Please google lyme sites if you haven't already. I don't remember exact addresses, but lymenet, lyme disease association, international lyme disease and associated diseases society (ilads.org) are good. Some have dr. referral for near your location. My personal opinion learned the hardest way, if cause of symptoms cannot be identified, give antibiotics for a month or more and see what happens. If the person gets to feeling more ill (herkheimer reaction) you are probably on the right track. This is because the bacteria release neurotoxins as they die off, so you will feel worse. The dose may have to be lowered if die off symptoms are too severe. Also, you might have to try a variety of antibiotics.

Bottom line, you may need to go to a specialist (an open minded one at that) to get an appropriate diagnosis. The first person to suspect lyme (at end of first year of being ill, now in AK) was a family nurse practitioner who studied in the East. My Mother even knew best and suspected lyme at this time.  We dismissed it since the tests were negative. You can’t imagine the “ what ifs”  that have gone through my mind.

At 4.5 years I traveled to NYC to Columbia Univ. Lyme Dis. Research Center, which confirmed the diagnosis. I live in Alaska (no ticks here) and another friend from here had similar experience; he finally got accurate diagnosis at John Hopkins Univ.

It is devastating illness if not treated adequately; symptoms can evolve over months. Dr.s may be reluctant to treat with long term antibiotics (which is why you might need to find one open minded). My husband was against antibiotics for more than a month, but he also agreed with dr.s who said it was psychiatric. When he saw how rapidly I regressed when off antibiotics for a week after being on several months he finally realized I did have lyme disease in my brain. Brain SPECT scan  showed global hypoperfusion, which is unlike depression.

I was on oral antibiotics for a year with some improvement, but then 5 months of IV infusion  Rociphen. I have been progressively improving over past 1.5 years since this stopped. I do want you to know I am much improved  :)), but I really suffered needlessly. I was so ill and unable to enjoy life, and gave much thought as to whom I was living for. Not taking my life to end the suffering was a long struggle, that subsided only after I had been on antibiotics for many months. Yes, I was on multiple antidepressants and had counseling. One of the biggest help to me was having my husband go to counseling  at the end of 3 years. This greatly reduced the tension. Talking wsa stressful as it was always about my health, and why didn’t I do this or that to get better. We resorted to hearing each other’s voices in non threatening way was to read to each other (he did most to it).

This is a very grave disease - don't mess around waiting. My son and family now live in Philly, and because of my experience they do not take possible exposure lightly.

Please read websites.

Response from PaintingCate regarding tests is very good. Look for her comment down the right hand column of responders.

[Lori707]

Sounds familiar. Was extremely sick for over three years, in and out of hospitals. My diagnoses was "It's in your mind, go to a therapist". I went to a Lymes specialist and my Lymes tests (plural) all came out Positive!

Lymes reduces the immune system which many times turns on the autoimmune process. Unfortunately you can't turn it off. My RA Factor is high and my ANA goes from negative to positive back to negative.

I'm on Plquinel, Gabapentin, etc.

Be well!

[JackieCalifornia]

Lori,

Just a thought -- from what I read, plaquenil is an antimalarial drug also used to treat lupus and rheumatoid arthritis, and gabapentin is an anticonvulsant used to reduce painful nerve activity (neuralgia).  

I'm not medically trained, but neither of those medications appears to be an antibiotic.  Lyme is a bacterial infection, and antibiotics are used to treat bacterial infections.

There is a view among non Lyme docs that Lyme is fully cured after 2-3 weeks of antibiotics, and any remaining symptoms are caused by a post-infection autoimmune reaction, in which your body is attacking itself because it can't find the bacteria anymore.

This theory is not held by Lyme specialists, who are of the view that Lyme disease, like tuberculosis and leprosy, are bacterial diseases with exceptionally long reproductive cycles, meaning they require months-long antibiotic treatment because it is when the bacteria are reproducing and dividing that they are most susceptible to antibiotics.  A year's worth of antibiotics are common in TB; I know someone who was treated that way, and it was not a TB super bug, but only regular ole TB acquired from someone visiting here from another country where TB is common.

I don't want to rock the boat here, and you seem to have confidence in your MD, but in your situation, I would see a Lyme specialist (an LLMD) who take the more progressive ILADS approach to diagnosis and treatment.  

In my experience, nonLLMDs also do not test for diseases other than Lyme, but Lyme ticks very often carry additional diseases that need separate testing and treatment.  It was that way for me and someone else close to me -- we both had Lyme and babesiosis (like malaria).  Maybe you are on the plaquenil to treat babesiosis?  ... but it does not, from what I read, treat Lyme.

It sounds like your doc is doing the right thing according to the IDSA standards, but those are rejected by ILADS.  In your situation, I would consult an LLMD for a consultation.  I probably would also not tell my regular IDSA doc that I was doing so, because IDSA docs can react very badly and reject a patient who seeks other advice.  There is a war going on in the medical community, and we patients are caught in the middle.

I'm sorry to bring up this whole topic, but if I were in your situation, I would have wanted someone to tell me what I have just written above.  What you do is up to you.

With best wishes -- J.

[JackieCalifornia]

Lori, also please read the post by 'winfree' up above.  I agree with her comments, for what that's worth coming from me.

[Lori707]

I can't be on antibiotics now becuase I'm fighting Candida in my blood and gut. I'm currently on AntiFungal Antibiotics for two months now and expect to be on it for at least another couple months. I do have a LLMD who is caring for this. I can't go back onto antibiotics because it would make my yeast go wild and that's not good. As soon as my candida is okay my LLMD is putting me back on antibiotics to treat the Lymes. I have already had a Picc line with Rocephen.

[JackieCalifornia]

Lori, I'm sorry to hear about the yeast/fungal infection.  The same thing happened to me.  

I have two suspicions as to why it happened to me:  (1) I think there is a genetic family susceptibility to fungal infections in my family, looking back at other family members' experiences over the years; and (2) I was on Florastor, a yeast-based probiotic that is not killed off by antibiotic.  My LLMD insists on patients taking Florastor (generic:  Saccharomyces boulardii) to AVOID yeast/fungal problems, but in me, the yeast just took over my system.

Now, my LLMD is an immunologist by training, so this guy knows his stuff and has pretty much seen it all, so I must be a rare case, at least in the eyes of the medical community.  The LLMD said he had never seen this happen to anyone else.

I was put on hefty doses of Diflucan (which causes some temporary hair loss at those levels) and I put myself on a very strict diet to stop feeding the internal yeast:  no fruit, no dairy and no grains, only protein and vegetables.  It sounds awful, I know, but that's how determined I was.  I FELT awful, and I was very bloated and brain-fogged just from the yeast, never mind Lyme or the diet.  I was m*o*t*i*v*a*t*e*d.

Actually the diet was fine -- I also dropped a bunch of extra weight and am now (a year and a half later) still back at my normal weight from years ago.  I am now back on grains and fruit, along with protein and vegetables, have put on 2 or 3 lbs, my hair has grown back in, but I don't eat the garbage diet I used to.  So win/win, but what a miserable way to get here!

My LLMD told me never to take S. boulardii/Florastor again, and instead to take regular probiotics when I am on antibiotics, but to take them at least a certain number of hours apart from the regular probiotics, so the meds don't wipe out the probiotics, which are replenished in my system every day.  I haven't gotten there yet.  

Don't know that any of this is helpful to you, but thought I'd toss it out there in case my tale of misery is useful at some level.

Take care -- and keep us posted, okay?  J.

[Lori707]

Sounds right! I'm also on Dyflucan AND Nystatin. One handles the gut while the other one handles the blood. My LLMD gave me home PH strips to test my urine and saliva. Both are coming out high acid. Not good. So...I'm on an Anti-imflammatory , Alkaline and Candida diet. UGG!! Been on it for two months and lost 11lbs in this time.

This is what I eat all day:

Breakfast: Cooked oatmeal with Organic Cinnamon and Turmeric.

Lunch: Organic Romaine with Atlantic Samon on top - No dressing used
           2 Brown Rice Crackers

5:00PM - Steamed Broccoli Florets and Cauliflower - no seasoning

Dinner: Turkey - white meat
            Kale and Squash

Snack: 1/2 Baked Yam

BORING!!

[JackieCalifornia]

Oh yes, I recognize that diet.  :)

Actually, I was running so scared I wasn't eating any grains either.  I think I was getting scurvy by the time I got sorted out and back on a semi-normal diet, but it's been quite a while, and no sign of the yeast.  Knock on you-know-what.

Do you cook with garlic?  It has a natural antifungal effect, so I read, and onions are helpful that way too.  I haven't been using garlic for a long time, but onions I eat almost every day to liven up the vegetables.

My BP is normal to low, so I can salt my food with no problem, and that sure helps the taste.

Also I only use extra virgin olive oil to cook with -- I think it has helpful antifungal effects too, if I remember correctly.  Fresh basil chopped up and put on your veggies is wonderful too.

One side effect of my diet was not only a big weight loss but my blood pressure (which had been normal) is now so low I worry about it sometimes.  Ha.  So I salt up my food pretty well, with no bad effects.

Hang in there!  It's worth it!!