At some point I will be seeing a llmd again. I was taking medication from the previous i saw but stopped because i want to get a good probiotic.
I have a positive western blot and that makes me feel a bit better but what if the lyme is not active, and i actually have something like lupus or any other autoimmune disease?
I am always tired, zero energy. It feels like i have to drag myself along all day and at work and it is really starting to make me depressed. I just need some support. I develop a mild headache or moderate mostly every day, i am always SO tired. I might cut gluten out of my diet soon. I am trying to eat healthy.
My past results had negative ANA along with the other inflammatory tests. But it isnt always positive for people, so how can you know you have an autoimmune disorder or not?
I am afraid something besides lyme is making me feel this way because i never felt any herx or improvement really on medication.. Was on it for almost 3 months. But not every antibiotic combo works for everyone, right?
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(Breaking up the post for easier reading for many here)
[ 08-09-2015, 10:41 PM: Message edited by: Robin123 ]
Posted by Keebler (Member # 12673) on :
- Three months is not adequate treatment. Not by a long shot. I'm sorry to tell you and really sorry that whatever doctor you found was inadequate to not even help you understand it's not that simple.
It's been just under a year since you were diagnosed. So, that tells a great deal.
Lyme is indeed, the front runner here. There are other tick borne infections that should be / should have been assessed, too.
And, yes, going gluten free would be an excellent help so that whatever treatment path you can settle on has a better chance of working.
And it will still take time.
To help others reply to your specific as to if lyme is in your life, for clarify:
At the top of Medical Questions, there's a thread about important info - you can scroll down a little to read about the meaning of the Western Blot test.
IND can mean a light positive.
IGeneX rules - for both tests, 2 positive double-starred bands; each stands alone with its 2 double-starred positive results.
Per conversation with them - a single-starred band could happen as a cross-reaction so by itself does not mean Lyme.
When I tested positive for band 31 on IgG my LLMD told me I had had it for a long time. He said that particular band doesn't show up until you've had it for a year. I had ++++ on it, so he literally said I had had Lyme for a VERY long time.
I was also happy to have a diagnosis. It took me three years after my diagnosis to beat it and I've been well now for 5 years. Good luck!
Dr C's Western Blot explanation is discussed here -
Posted by Keebler (Member # 12673) on :
- I am one of many - very many - who were first misdiagnosed as having lupus, & various other "autoimmune" disorders before 3 tick borne infections and two other chronic stealth infections were diagnosed.
For a large part "autoimmune" "disorders" are not actually a specific disease but a constellation of symptoms with some made up name as an umbrella.
Many are actually not just caused by infections (that "trigger" autoimmune reactions) but ARE infections and the "trigger" is just the way the stealth infections work
and there really in no need for disease name label that would just do Band-Aid approaches and those that dangerously suppress the immune system IF the actual CAUSE of symptoms would be correctly assessed and addressed.
Find the cause, that is the name.
Yes, after some time, chronic infections can cause damage to immune function. But that is not at all the same thing as the typical doctors wedded to pharmaceutical industry to supply expensive symptom belief rather than address the cause would have us believe about very many (though not all) "autoimmune" labels.
In your case, the symptoms, the tests, inadequate treatment all point to lyme certainly being the major player here.
I know it's hard to find a LLMD yet, somehow, I hope you can find some way to meat this head on. Others have gotten better, over time. It's possible for you, too. -
Posted by Keebler (Member # 12673) on :
- Kaseyyy,
Have you been able to attend any lyme support group meetings in your area . . . or connect by email or phone with a leader of a group?
It could be helpful in many ways. -
Posted by hopingandpraying (Member # 9256) on :
Btw - please break up your posts into 2-3 sentence paragraphs, as there are people on Lymenet who cannot read large blocks of text due to neurological problems from Lyme. Thanks.
You can do this with your original post by clicking on the pencil/paper icon, making your changes, then clicking "Edit Post".
Posted by Kaseyyy (Member # 43797) on :
I think if i do have it it is a mild case. However i am afraid its really not lyme. I am afraid of things like sjrogen's, etc.. and i don't get how some people get labeled with lupus while others fibro and CFS..
What if they really are all the same thing? I don't think i can afford to spend a lot on a lyme doctor at this time...
When i woke up before getting sick the other day (it was the stomach flu i think because my brother had it and i had a high fever), where the upper and lower arm connect, hurt. I can't seem to tell any specific "flares" so i am not sure if i have them or if i always just feel crappy.
It seems unlike me to have gotten sick three times now with what seemed like a stomach flu all in this year. Maybe my immune system is working really badly because of lyme??
I heard plaquenil is used to treat lupus... But it is an antimalarial drug correct?
Posted by Keebler (Member # 12673) on :
- A lot of questions are answered in these books. And also through your area lyme support groups.
Why Can't I Get Better?: Solving the Mystery of Lyme and Chronic Disease
[This addresses all the points that many ILADS educated LLMDs know are vital to success. Doctors connected with IDSA would not be on the same page at all, sadly.]
- by a leading ILADS LLMD - released Nov. 2013 -
Posted by Kaseyyy (Member # 43797) on :
When I took diflucan before I noticed no die off symptoms.. How can you be sure how you feel is lyme, candida, parasites or something else?? Is the smart thing to do is treat it all together (like taking candida supplements) and cutting out (or reducing?) sugars, bread (could i still have brown rice?) i think it would be too hard for me to cut out ALL sugar, for example fruit.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Kaseyyy: I think if i do have it it is a mild case. However i am afraid its really not lyme. I am afraid of things like sjrogen's, etc.. and i don't get how some people get labeled with lupus while others fibro and CFS..
What if they really are all the same thing? I don't think i can afford to spend a lot on a lyme doctor at this time...
- It's a crapshoot .. doctors don't know!! So treat Lyme since it is the most likely cause of "CFS" "Lupus" "Fibro"... bacteria can cause inflammation, which causes auto-immune.
None of the other "diseases" are treated at the SOURCE. They only have band-aids for "Sjogren's" .. I know because I have it.
My belief is that you end up with the other things due to chronic inflammation. So treat the LYME and you will have a better chance of recovery.
Posted by Kaseyyy (Member # 43797) on :
So it is wise to treat candida, lyme, parasites etc altogether.. Do you need to avoid all sugars and gluten when getting rid of candida.. Can you get rid of it without doing that completely? How about with lyme? is diet very important getting rid of lyme? Thanks
Posted by Lymetoo (Member # 743) on :
DIET IS EXTREMELY IMPORTANT when trying to clear your body of Lyme and the toxins from candida.
Do your best to eliminate any sugars and simple carbs like potatoes, pasta, etc.
You can treat all 3 if you can handle the herxing.
Posted by poppy (Member # 5355) on :
Lyme docs have found that autoimmune markers go down to normal after lyme treatment.