posted
Hi everyone, been reading here for awhile and figured it's time to check in. Feeling awful and have been for about 12 years now which really sucks because I'm only 31 and just suffered through my entire twenties
Long story short as possible, when I was 19 I was hospitalized with what turned out to be superior mesenteric venous thrombosis (small intestinal vein). Doctors were stunned, never found a cause for it, treated me with IV heparin for two days before sending me packing, saying that the clots were gone and I'd be fine. During the course of all this my entire GI tract was in total shock, went from skinny to extremely skinny very rapidly.
Weeks, months and years went by, still feeling miserable but functional most of the time. Dozens of ER visits, almost every test for every individual symptom in existence, and no answer for why I've still been feeling so gross.
Fast forward to 2016, through my own research finally found my way to Igenex for a western blot.
IgG shows IND on 31 and 39, + on 41 and - on the rest.
This is definitively Lyme, right?
I started seeing an LLMD in my area in 2017. He was insistent on only treating with herbs and supplements and wasn't keen on ABX. After a few appointments I lost faith in him and kind of just fell off the wagon and went back to suffering through my daily life.
Symptoms: 24/7 severe air hunger, constant wooziness/full-headedness and just generally weird physical head state with new sensations coming and going day to day, stomach bloating/indigestion/reflux/diarrhea/weird looking poops. Bad insomnia (haven't been able to get any sleep before sunrise for a week straight, I lie awake in bed all night and my body will just not let me fall asleep.) The health anxiety I've endured over the past twelve years has at times felt enough to nearly kill me itself.
I've had muscle twitching at times but hasn't bothered me in a while. I get occasional shooting pains here and there, but luckily joint pain isn't one of my issues. About a month ago I developed popping and grinding every time I move the right side of my jaw. Very annoying.
So that's the gist of it. I'm not having fun. I'm scared. I guess I'm just seeking encouragement to find a new LLMD and start some kind of treatment. I'll post separately in the seeking doctor forum but if you got this far and have a rec in the SF bay area please DM.
Thanks and be well!
Posts: 3 | From Santa Cruz | Registered: Jun 2016
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posted
I'm also curious about the possible link between Lyme and hypercoagulability. I've read some stuff suggesting that it certainly exists, but I've never heard of another case where someone was previously healthy and then presented with a highly unusual thrombotic event before eventually discovering they had Lyme.
Posts: 3 | From Santa Cruz | Registered: Jun 2016
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posted
Hi and welcome - you are definitely positive. I am private messaging you, including doctor referrals.
Posts: 13116 | From San Francisco | Registered: May 2006
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Thx for the plug, Bonnie - you are great here too! We all try...
Re sx - re severe air hunger - have you looked at babesia symptoms to see whether you match any? Can be from Lyme too.
Turmeric is a simple anti-inflammational spice, if you want to try it - it takes down inflammation for me.
I have taken 25mg Benadryl for years to go to sleep. I'm up to 75mg now. Amt has gone up thru time, but we need to sleep!
I think you need to work on your stomach issues with a good doc - stuff is going on there. Gut specialists say to heal the intestines by drinking broths. You could read websites for Josh Axe, Donna Gates, Sayer Ji and Allison Siebacker to learn what they have to say about healing the gut.
Muscle twitching indicates need for magnesium. We all take different forms of it.
Jaw popping is TMJ - temporal mandibular joint dysfunction. I recently went to an extremely experienced cranial expert and he stopped that pain. I'll private message you his name.
Posts: 13116 | From San Francisco | Registered: May 2006
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You need to be evaluated and treated by a Lyme-literate doctor (LLMD). Non LLMDs have no clue about this horrible disease or its complex treatment!
A LLMD is one who has treated Lyme disease and the co-infections which come with it for many years and has gotten patients well. A good one will follow Dr. B's Guidelines, the "gold standard" for Lyme treatment.
Read the books written by the top LLMD, Dr. H titled, "Why Can't I Get Better?" and "How Can I Get Better?". They are an excellent source of information.
Also read "Cure Unknown" by Pamela Weintraub. Check your local library or buy it used on Amazon.
Btw - I know you are new to Lymenet, but 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.
To do this click the "Edit Post" tab at the top of your post, make your changes, then click "Edit Post". Thanks.
Posts: 8981 | From Illinois | Registered: May 2006
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