Just diagnosed after many years of not knowing

Here goes.....just got lab results back after having 9 vials of blood drawn a few days ago in an attempt to find out the cause of my long term health problems. Only thing found was lyme disease. Let me say this about how/when my problems started...way back November 10, 1985, went running along a lake near me, cleared brush at my property, woke up around 2am with severe night sweats, stomach churning, felt a fever going down through my body, terrible desire for sugar, went out to the kitchen and downed several sugar cubes. Next day tired as hell...couldn't walk more than 100 feet and so wanting sugar. This continued on and on...I would go to the store and load my cart up with pie, cake, ice cream, candy and after eating this crap I would get diarrhea and gas terribly. Never felt so lethargic and tired in my life. Teeth started coming loose. White coating on my tongue you could scrape off with your fingernail. I thought I was going to die. Doctors ran many tests but couldn't find out the cause. Some felt intestinal bugs but nothing worked. I even went and got all my metal fillings removed from my teeth thinking I was getting mercury poisoning. I went through several months of chelation therapy and no benefits. Gastro docs went up my butt and down my throat several times and found nothing wrong. Finally about 6 years ago a gastro doc decided to do what was called a lactulose test where you drink some kind of liquid and blow into a gas analyzer to determine amounts of methane/hydrogen. My hydrogen was extremely high and the doctor felt I had SIBO (small intestine bacterial overgrowth). I was prescribed metronidazole to kill the bacteria and it did work but as soon as stopping the drug, all the symptoms returned. Did this twice and same thing happened so stopped the antibiotics and just decided to live with the gastro and fatigue problems until recently when I pushed a new primary care doc to dig deeper and therefore the most recent blood work. he's prescribed me doxycycline for 3 weeks, took the first capsule a few hours ago. Anyone on this forum have severe gastro issues with Lyme? I hope this antibiotic works...been a long time dealing with this and never tested for Lyme before this most recent test.

Post Edited (Holidayhill) : 2/19/2021 2:43:12 PM (GMT-7)

Thanks, Garzie!

Curious what your lyme testing looked like and if you were still IgM positive for lyme all these years or just IgG?

Like garzie said, all these years later I’m not sure doxy will do the trick. Works better on a new infection. If there’s still active lyme you’ll likely need other abx. And even if you got all the lyme, you’ll likely still have problems because you haven’t fixed your stomach. Or you may not even have an infection left, could just be left w an a screwed up microbiome. My point is, and I’m just being honest, 3 weeks of doxy isn’t going to fix something you been living with for 35y. My guess is this will take significant lifestyle changes, a whole food diet being the first step.

The rifaximin and SIBO antibiotics don’t work unless you have an acute infection like a stomach bug you picked up on a trip. In those cases you take the rifaximin and it kills whatever pathogen you picked up and your healthy bacteria reassert themselves. Your problem is that the default state of your microbiome is likely dysbiosis at this point. So you take abx, and when the abx wear off, it goes right back to what it knows, dysbiosis. You need to shift that with proper diet, sleep, exercise, nutrients, etc

Also, what are your symptoms if you don’t mind my asking? Most of what you described sounds like SIBO + candida (oral thrush, the white stuff that was on your tongue)

Post Edited (dcd2103) : 2/19/2021 5:50:19 PM (GMT-7)

I was never tested for Lyme previously, not until 2 weeks ago. The lgG had only 4 out of 10 present. The lgM had 2 out of 3 present (23 and 41). Six years ago when I was treated for SIBO they gave me metronidazole which really helped eliminate the digestive issues until the prescription was finished and then the symptoms came right back. The metronidazole does not penetrate the Lyme cells, from what I've read on the internet, so I guess without killing the Lyme bacteria first, any chance of getting the gut issues under control is a lost cause. When the original problem surfaced in 1985, I never had a red rash that I saw and didn't know I had a tick bite but that doesn't mean I didn't have one....I think only 50% of Lyme disease tick bites result in the rash(?). Going out running in the woods and clearing brush the same day seems to indicate strong possibility of getting a tick bite although at the time it wasn't something I had considered. I'm just very surprised now I test positive and that no medical professional ever thought to question me about Lyme....most likely because the symptoms don't line up, but over all these years I've had the same symptoms occurring continually, nothing new to indicate a tick bite happened more recently. Maybe I'm wrong, but testing positive for Lyme should have resulted in symptoms, right? And if the only problems I've had over the years have been excessive tiredness, bad digestive issues, and to some extent joint pain, brain fog, eye dryness, irritability, and other things....with nothing else other than Lyme being found, that could very well be my problem. I'll see what happens with the doxycycline and go from there.

Post Edited (Holidayhill) : 2/19/2021 6:13:24 PM (GMT-7)

dcd2103....blood work was done at a Lehigh Valley Network Lab in PA, don't know where they have the vials sent, whether their own lab or outside. They took 9 vials and had the blood checked for many different things other than Lyme...all the other stuff was in range.

Holidayhill,

I was posting the same time you were so I didn’t see you had posted your test results. That’s interesting. The Lyme test certainly seems positive.

“ And if the only problems I've had over the years have been excessive tiredness, bad digestive issues, and to some extent joint pain, brain fog, eye dryness, irritability, and other things”

Ahh. . . . so there were other symptoms. Not sure what age you are, but people who have milder symptoms or symptoms that develop over time may assume their symptoms are just from age or some other explainable cause.

You have options here. You can try treating Lyme and see what happens, but you could be in for an unexpected ride. Like the others said, 3 weeks of doxycycline isn’t going to cure Lyme, certainly not long-standing Lyme. It sounds like you have already done some reading up on things. Treating tick borne diseases, especially chronic ones, can be a painful experiment. Treatment can cause herxheimer reactions and can also open a pandora’s box, triggering new symptoms and/or stirring up dormant coinfections.

That said, you clearly deserve to be helped after all these years of suffering. I would recommend seeing an LLMD and getting their advice on treatment for Lyme and possible coinfections. I would expect a good LLMD to focus on the gut issues first.

The present lgG were 41, 45, 58, and 66.