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Healthy to Lyme to Autoimmune Disease in 2 1/2 Years

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Posted 1/6/2020 9:33 PM (GMT -5)
Good luck with the fast dcd. Please update on your progress as I'd love to read about it

...and sorry to hear of your struggles today, running wild. Hopefully they're short-lived
Posted 1/7/2020 12:17 PM (GMT -5)
Good luck with the fast. I would like to do one but lose weight so quickly there's no way I could lat long. Already have cut so many calories to deal with Lyme, kidneys, autoimmune. In reading article in the link you sent, it mentions following with a vegan. I have tried to go vegan before but, again, lost too much weight as metabolism is still fast. But what could be worse than dealing with this?

Two things that throw me, at least in the situation I'm dealing with. One is I have not seen a autoimmune disease that destroys fat only. The fat loss on me began way back in 2002. Yet I've gotten better a couple of times during that and even gained decent weight back. Yet I still am experiencing fat loss, what little is left. So that tells me there is a good chance Lyme is still in the picture.

Other aspect is EBV, which can cause autoimmune. When I got better before, I did not have EBV. So it could be EBV has caused the autoimmune. Monolaurin has seemed to help some, but waiting on tests taken yesterday to see where EBV is. IgM and IgG have always come back high positive, but doctors seem to put a lot into the EBVDNA, which has been negative. I've read a lot about EBVDNA but it still confuses me on whether it trumps the IgM and IgG. My guess is no.

If you do liquid fast, would you go to the vegan diet?
Posted 1/7/2020 2:52 PM (GMT -5)
Good point w/ respect to EBV, def known to cause autoimmunity. Not sure about the testing myself, but would imagine the DNA is harder to test for than the antibodies, maybe more false negatives? Probably more accurate if you do get a positive though.

What do your drs say about your fat loss? Lipodystrophy causes fat loss esp in the trunk and face and can be triggered by an infection, ever look into that?

I wont go vegan, but i will try to cut out the sugar and add in more veggies after. I used to eat pretty healthy. I was never perfect and always ordered in, but I would make sure to always get veggies in my meals and try to eat relatively clean, at least during the week (weekend I would allow myself a burger or pizza). If i had a hard workout I'd crave nice clean meat w/ broccoli. Past few years I've had stomach issues, and I noticed I literally no longer can stand to eat wholesome food. I crave sweets and fries. Vegetables just dont make me hungry. I feel like I just have so much bad bacteria in my gut that must be craving this stuff, and I need a reset and to get off the sugar and hoping 5 days of nothing in my stomach can kickstart that. My girlfriend this morning made eggs w/ fresh salsa and bok choy, and just the smell drove me nuts. That wouldnt have happened 3 days ago, so hopefully I'm on the right track.
Posted 1/7/2020 8:02 PM (GMT -5)
That sounds like a good plan and will be interested to hear how fast goes. Do you lose weight easily? I miss working out and running badly. Just isn't going to happen with back and foot pain, not to mention weakened immune system.
I'm still not sure this is all autoimmune as the morning anxiety that always went away with good Lyme and co-infection treatment is really bad right now. It could be both, and that would make sense. Around Thanksgiving I felt better for about a week or more. No anxiety, less pain, etc...
The loss of fat has driven me crazy for years. I have wondered about panniculitis. There is another name for loss of fat in a different way, as in loss of fat but without the hump on back that can occur. Can't remember the name right now, but you are right - infection can cause it. Lyme makes since, especially wide spread ACA. Just wish it could regenerate, but that doesn't seem to be a good chance. I still have all muscle and just as much strength. It's just so weird.
I get what you mean about craving sweets. I miss them badly, and I know not eating that and breads has added to the weight loss. Is there a test for bacteria in the gut? And are you still doing Bicillin? It helped me tremendously when I could take two shots a week at 2.4 mu.
Posted 1/7/2020 10:44 PM (GMT -5)
I actually have lost 10-15 lbs in the past year, mostly as a result of lack of appetite exercise being sick and a screwed up stomach I think. I don’t noticed
it particularly w fat, feels like I’ve lost muscle too. Look into lipodystrophy and it doesn’t seem like that?
Posted 1/9/2020 7:21 AM (GMT -5)
dcd2103
Thank you kindly for taking the time, to enlighten us with your detailed information. I need copies of the most recent bloodwork. It was done in the er. I'm grateful for your knowledge and willingness to help us understand and even decipher our test results. I requested copies and they said they'd send them but....looks like I'll need to go in and pick them up myself. The family practitioner insists, "Your Lyme has been treated" (21 days Amoxicillian)and becomes very angry when I insist that I was never sick until the tick bites and that the antibiotic did little to nothing to alleviate the symptoms and sickness. So we really are on our own. Thanks again & I'm grateful to share the results when I get them. I know very little about allopathic testing. I do see the ANA tests have many false positives and all around, blood tests are only about 25% accurate so have trouble believing any results, they do or don't present. Want an Ayurvedic doctor but here in the land of Rockerfeller medicine that isn't easy to find...
Posted 1/9/2020 7:22 AM (GMT -5)
dcd2103
Thank you kindly for taking the time, to enlighten us with your detailed information. I need copies of the most recent bloodwork. It was done in the er. I'm grateful for your knowledge and willingness to help us understand and even decipher our test results. I requested copies and they said they'd send them but....looks like I'll need to go in and pick them up myself. The family practitioner insists, "Your Lyme has been treated" (21 days Amoxicillian)and becomes very angry when I insist that I was never sick until the tick bites and that the antibiotic did little to nothing to alleviate the symptoms and sickness. So we really are on our own. Thanks again & I'm grateful to share the results when I get them. I know very little about allopathic testing. I do see the ANA tests have many false positives and all around, blood tests are only about 25% accurate so have trouble believing any results, they do or don't present. Want an Ayurvedic doctor but here in the land of Rockerfeller medicine that isn't easy to find...I have pics of the rash but how can I share them on here?

Post Edited (BlackTara) : 1/9/2020 5:38:20 AM (GMT-7)

Posted 1/9/2020 10:58 AM (GMT -5)
Black Tara - Your family doctor, like so many others, seems ignorant to Lyme. Someone else might be able to help you with sharing pictures as I am not good at that either. dcd has been invaluable for thought provoking information and ideas.

dvd - I've looked into lipodystrophy. It seems more like lipoatrophy, which is very similar but doesn't cause fat accumulation elsewhere. I'm considering deeply going to see one of just a few specialists in U.S. that is an expert on it.
Posted 1/9/2020 12:03 PM (GMT -5)
For pictures you need to use another site like PhotoBucket or Tinypic
You paste a link here to the photo.

https://photobucket.com
Posted 2/27/2020 11:44 AM (GMT -5)
I saw this today looking at other things. I started down this downward spiral having eye issues (pain,cluster headaches, redness) and moved on to have some muscle and neuropathy issues. One day my leg went numb for about 24 hours. My sedation rate went to a 30, CRP negative. My dr did an MRI thinking MS-came back fine. Ran ANA and SSA-RO antibodies. The first ANA in August was a 1:320 (speckled) titer and another dr in December ran it and it was 1:1280. RO antibodies have stayed >8. My Rhuemy said sjorgens. The second opinion said he didn’t think so, but gave no other thought than saying MS, which was ruled out. Said my C3 and C4 were “fine” Lupus tests have came back Negative. I wasn’t happy and felt there was more.. New PCP believed in Lyme and had Lyme tested for Lyme IGG bands 93,66,58,41 and 34. The IGM I had 41 and 39 bands. Would have been cdc positive but my band 39 was a 58 instead of a 60. My daughters band levels were in the high 200s and is CDC positive.

So here I am stuck in this.. do I have sjorgen’s even though my eyes aren’t as dry as everything suggests. Do I have some other autoimmune? Are all these muscle, joint, neuropathy issues, now upper chest/throat issues the Lyme or an autoimmune disease. Rheumatologists looks at me and dismissed me saying it’s just anxiety causing the extra.
Posted 2/27/2020 11:55 AM (GMT -5)
This is exactly my situation clclarky!

Positive ANA (1:320 speckled). No positive sjogrens but positive RNP (very low titer). I'm diagnosed as Undifferentiaed Connective Tissue disease. Dr. K in CT has diagnosed me as "Post infection autoimmunity". Some other drs would normally diagnose this as seronegative sjogrens. I have neuropathy, neuropsyche issues, exercise intolerance, and now suddenly joint pain.

This "non specific" autoimmunity seems to be on the rise. Pretty much everyone in the small fiber group who has it due to autoimmunity is nonspecific. I think all it means is that you have a form of autoimmunity that doesnt match a specific definition or antibody that we've isolated. The common traits for autoimmunity are all there (fatigue, joint pain, inflammation) and the serologic markers (positive ana, low wbc/rbc, high sed rate). I am concerned that it can morph into something more sinister like MCTD in my case because of the RNP, but Dr K says its just htat my immune system is on high alert due to the pathogen. Not sure i 100% believe its all just a bug, i think there are otehr stressors like metals, chemicals like organophosphates, lifestyle, genetics that all come into play. . Another dr i've spoken to thinks the cause is actually EBV in most cases.

Anyway, IVIG is probably the treatment for you. And try a course of antibiotics. Change your diet. I'd really really lke to find a case of a person whose ANA came back down to normal after antibiotics or chelation therapy (removing the trigger).
Posted 2/27/2020 12:08 PM (GMT -5)

clclarky said...

So here I am stuck in this.. do I have sjorgen’s even though my eyes aren’t as dry as everything suggests. Do I have some other autoimmune? Are all these muscle, joint, neuropathy issues, now upper chest/throat issues the Lyme or an autoimmune disease. Rheumatologists looks at me and dismissed me saying it’s just anxiety causing the extra.

You have Lyme. It's all the Lyme (and co-infections). I hope you have an LLMD.
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