Still on the road to diagnosis

[renschwa]

Uggh! So last week my neuro informed me I "might" have lupus. However, both my LLMD and primary looked at the lab report and also gave me a copy where it says"findings inconsistent with lupus". My symptoms also do not sound much like Lupus. The LLMD said this not not of any concern now. My brain MRI came back normal. One thing my LLMD noted is that my Sedrate was high. Normal range is 0-25. I'm 25. She said this measures inflammation in the body. Apparently having a high sedrate is consistent with Lyme. Yet, my other 2 docs did not notice this result. My LLMD isn't even the doc that ordered the test! So I'm at least feeling good about hte LLMD I chose at the moment. She's responsive, thorough and open to possibilities other than Lyme as well. At this time, I feel I'm in good hands with her. Hope that continues! Fingers crossed!

So I'm still awaiting the Igenex results. About 2.5 weeks to go. And even though I haven't been Dx'd with Lyme yet, I'm already worrying about reactions to the Antibiotic and having the whole Herx thing and wondering how bad it will be. LLMD sais it gets worse before you get better. (I'm such a worrier. My poor hubby....)

My doc also gave me info on a sugar free-yeast free diet, and I'm vegeterian to boot. Totally stressing that. Already looking for recipes. It would be a tough diet for me but you do what you have to do...Has anyone tried this diet? Does it really help alot?  

Also worried about the possibility that it may come back not Lyme, then what could it be? So stressful.... I know you all on here understand how hard this process is!

[renschwa]

It comforts me that my LLMD has said we can look at your ANA & do further testing if we find this is unlikely to be Lyme. I feel like she is open to all possibilities unlike my other docs. My primary shook her said and just said you do not have lupus, your symptoms do not match and that is not what this lab says. My neuro says you do not have MS but I'll do blood work and brain MRI for "your peace of mind".

LLMD said if we treat for Lyme and if I do not get better or if I do not have the Herx thing, she'd question the Lyme diagnosis. I was impressed by her saying that. She said then we'll have to look for other things. Right now I feel like I'm in good hands with her and only hope and pray that continues!!!! It's so hard to find good docs!!!! I'm not thrilled with my primary(internal med) doc and def. not my neuro at all.

[wonko]

Diagnosis can be long and confusing.  I saw a rheumatologist once.  Upon exam and history, she was convinced I was "coming down" with RA and or lupus.  This was the same day that I saw a university neuro who told me to keep getting MRI's every six months and in between, pray that I didn't develop MS.  

My blood tests for lupus were negative, though I also had a high sed rate (I think in the 40's, but it's been awhile) and I also had high c-reactive protein, another inflammation marker.  

Again, no medical training here, just my thoughts as a patient dealing with this mess.  Lyme can manifest in a number of ways and cause anomalous blood tests.  Keep at it with the specialists for peace of mind and to rule out other causes, but I'm glad that you are also considering Lyme and seeking appropriate testing for that.

Unlike JackieCalifornia, I never adopted a strict Lyme diet, both because of personal weakness and because I never got yeast that bad (though it is an on/off issue for me).  I tried a couple of times, but personally felt weak and exhausted on a sugar-free low carb diet.  I also attempted it while vegetarian.  I have since resumed eating meat, though mostly poultry and fish and rarely beef or pork.  For me, I think I need a varied diet to feel my best.  I don't think there is a single diet that will work for everyone.

I had one LLMD suggest bottle after bottle of supplements, while another I consulted was against taking any.  I try to stay open minded and willing to change as my condition dictates.  If there was a single therapy, supplement, or diet, we wouldn't be here.

Even if the tests come back negative for Lyme, you may still have Lyme.  I was never positive (just a couple bands on Igenex), but I've responded to antibiotic treatment.  I told my LLMD that I really don't care what we call it, as long as treatment works I'm staying the course.  My alternative was facing disability and a lost career at 30.  No thanks!  Had I not responded to antibiotics, I would have kept looking.

Good luck on the testing, I'm sure you'll find the strength to take it as it comes.

[renschwa]

All very helpful info!

I did get tested for co-infections thru Igenex. I got the whole enchilada.

A friend from my gym recommended a person who is a holistist healer/nutrional counselor that I will consult once Dx'd. I'd like to avoid problems like yours if possible!

I'll check to see if my probiotics have yeast! Thanks!

[JackieCalifornia]

To my untrained mind, this is good news about the lupus.  Neuros are trained to believe that Lyme is like a summer cold, it comes and then it's gone, and it never stays.  As a result, they look for other diseases like lupus to pin the symptoms on.  Keep copies of ALL your medical tests, and be sure to follow up if you don't receive them.  The front desk people in the dr's office find this a drag, but too bad.  I paid for the tests, I want the paper in hand.

Again to my untrained mind, sed rate is a measure of general inflammation in the body.  The range of 0-25 as normal is just a range, some people can be higher and it's maybe normal for them, I dunno.  However, there is nothing magic about test ranges -- they are a range, not an absolute.  On a 0-25 range, you are still IN range with a 25 result, and even if you were a bit above, all it seems to show is that you have relatively higher levels of inflammation than other people, but that doesn't mean anything specific, just a general marker -- like having an upset stomach could mean you have an ulcer or you ate bad chili for lunch.  Many MDs would just take that as a data point in the context of all your other test results and symptoms.  Yes, "Apparently having a high sedrate is consistent with Lyme."  But it's also consistent with other things.  One data point among many.  Your LLMD sounds very thoughtful.  

I'd wait for the Igenex tests, and see the Lyme MD as planned, but till then, don't jump to any conclusions.  You are doing all the right things as far as I can tell, having been through all this stuff myself.

Re Herxing.  Yeah, it's not fun, some people get it worse than others, but for me the Herxes were not as bad as being permanently sick and nonfunctional.  "Don't borrow worry" -- just keep plowing ahead.

You say:  "My doc also gave me info on a sugar free-yeast free diet, and I'm vegeterian to boot."   I got a systemic yeast infection from the antibiotics I was on for Lyme AND because I was taking yeast-based probiotics AND because I accidentally doubled up on those probiotics for a couple of weeks.  Doesn't happen to most people, but it did to me, so I have now been on a 'greens and proteins' diet since May.  I was never a vegetarian, but don't eat red meat, just fish and chicken and eggs.  At some level I got malnourished (brittle nails, scaly skin, poor memory ... in the Third World I think it's called starvation and malnutrition), I think from not getting enough essential fatty acids, and I am just crawling out of that hole now.  Be careful not to do that to yourself...your body is fighting hard to get well, and if you don't give it the stuff it needs, it can't fight the bugs.  Think about working with a nutritionist to be sure your diet is covered.  Also, Lyme uses up a lot of magnesium, so think about supplementing that, but not too much since I read that it's hard on your kidneys.  I take 100% MDR in the form of magnesium malate, and my blood tests show I'm doing okay, but sometimes my levels dip.

As said above, I'm not medically trained, so check with your MD etc, and do hang in there -- the cure can be hard, but it's not nearly as bad as the disease.  

You say:  "Also worried about the possibility that it may come back not Lyme, then what could it be?"  There could be co-infections that come from the same ticks as Lyme, but your MD is probably testing for those already.  If you have a co-infection, it might need separate medications, but that's doable.  You are fortunate to have a thoughtful MD, so try to chill and think positive thoughts.  With Lyme, getting the diagnosis is often the biggest hurdle.