Hi everyone :)! I wanna start out by saying I'm sorry I didn't post back to your replies sooner. I wasn't feeling well and it was really hard for me to think up anything to say back :(.
Anyway since a bunch of bad doctors I finally found an Infectious Disease Specialist who is taking me seriously. He looked over my IGeneX results, my CBC tests, and everything else. He then ran a ton of other tests including another Lyme test from Quest to get his own data from a different lab.
By some kind of miracle my Lyme test actually came back with even more bands positive than it had before from Quest and he now wants to discuss long term treatment for Lyme :D! Finally a doctor I trust who is going to do something :). So on Friday I have an appointment with the Infectious Disease Specialist to discuss that treatment.
However I've been on a roller coaster with doctors most say I don't have Lyme, some say its all in my head, and some say its all from anxiety and I should be on Lexapro. Others say its anything from the common flu to a "long term viral infection". All these different opinions have my head spinning on weather Lyme is really my problem or if I'm just fixating on a "solution" with a vague catch-all list of symptoms.
- Daily (fever?) of up to 99.9
- Extreme Fatigue
- Strong mental cloudiness / impairment. (Like you feel if you drink to much).
- Muscle twitching
- Some minor short term memory problems.
- Elevated Liver Enzymes, Alkaline Phosphatase and Bilirubin.
- Positive IGeneX Lyme Test (IGG and IGM)
- Negative IGeneX PCR
- Equivocal CDC Quest Lyme Test
On the side of the doctors opposed to Lyme I admit I do have anxiety. I've always been a more anxious person than most. But even when I'm not anxious I have all these symptoms but they do get worse with anxiety.
So my question is do you guys think this really sounds like Lyme? Or can someone get a temperature as high as 99.9 just from being keyed up or anxious? I mean if I trust the Infectious Disease Specialist and the IGeneX tests then they say I definitely have Lyme but if I trust the CDC and the other doctors then I don't.
I just don't want to get long term IV antibiotics for nothing if its really anxiety or something :/ even though it feels like much more than that.
Sorry I know this is long but its getting down to treatment finally and I just want to be sure. Thank you all for being there :)
Hey, good to hear from you. You've been busy! That's good, because that's what you need to get well. And it sounds like you are making progress with all you have done. I know how hard it is to pursue docs and appointments and uncertainty and still plow ahead, and you're doing just fine imo.
... and ps no need to apologize for being away.
Random responses to your post:
-- Don't get hung up on the 98.6 temp as "normal". Everyone is different in what is normal, and normal also fluctuates from day to day and during a single day. Nothing in nature is steady-state. You know how on the freeway, if the speed limit is 55, there are people driving 50, some 60, some at 70 if they're feeling frisky, and some driving 56 (one point above the mark, like your temp). The one doing 70 is off the chart, but people doing anywhere from 50 to 60 are in the range, and that's how I look at temps.
You seem to have hooked that rarest of fish: an ID doc who believes in Lyme! I hope he is as open-minded as he seems, and you'll figure that out as treatment progresses.
I was treated by a hardcore, wellknown LLMD, and he never even suggested IV antibiotics, strictly oral meds. So don't worry, just see where the doc takes it and then decide if it feels right, and if it doesn't, then tell the doc before deciding whether to bail.
To your question: does this really sound like Lyme? YES.
Were you tested for possible co-infections that the Lyme ticks also carry about half the time? They have different symptoms and usually different treatment from Lyme. See what the doc says.
It's always one step at a time with Lyme and with the docs -- just keep going ahead and reevaluate occasionally if you think you and the doc are on the right track, and if it feels like something's being overlooked, then talk to him about it. The worst he will say is no. And you are entitled to an explanation of why he thinks no.
One step at a time. And you're doing great, having gone through all those other docs, which is such misery on top of being ill. But that's part of Lyme. I went through 20 docs before getting an accidental diagnosis, so I hear you: it's a long, tiring road. And I think you're doing great with the course of action you have taken.
Are you taking magnesium supplements? It helps with the anxiety more than you would think. Any kind ending in "-ate", like magnesium malate, orotate, aspartate, etc. I liked malate, and currently (even now) take one that is a blend of magnesium citrate, aspartate and orotate. The American diet is deficient in magnesium, and Lyme also depletes it, so it's a double whammy. I have read that the combo of magnesium and calcium often found in drugstores (one brand name is CalMag) is not really that good because it isn't very absorbable.
Keep copies of ALL your tests, the good ones and the bad ones. At some point, you may need that longitudinal data, and I still have my binder on the shelf over there. Getting tests back from a former doc is very difficult, and you can't ever be sure a lazy file clerk really copied everything. It's not uncommon to switch docs during treatment (not saying you will -- once I found a doc who believed in Lyme as your seems to do, I stuck with him till treatment was done and the Lyme was gone.)
Thank you for updating us -- really glad you are persevering! Keep us posted, okay? Take care.
I am so glad you found a doctor who will pay attention. And that he suggested long term treatment is fantastic! (Of course to some docs, three or four months is as long as they'll go, when in reality a patient may need much more than that.) But it's a great start.
I do not believe you are crazy, and I do not believe anxiety can cause a chronic low grade fever. Docs are WAAYYYY to quick to label unexplained symptoms as results of anxiety these days. If you have any Lyme specific bands, then I don't see how you could have developed those antibodies without having Lyme spirochetes in your body. No one thinks these tests find antibodies that don't actually exist. A "false positive" has to do with having antibodies that are common to Lyme and something else, when the "something else" is triggering the antibodies.
I think when you start antibiotics, you'll either herx, or you'll start to feel better. Since you're not overwhelmingly sick, you should start to feel better in a few days or a few weeks. Not everybody herxes, but if you just feel worse in general, that can also be confirmation. With my initial antibiotic, I didn't really herx. I felt a tiny bit better 6 weeks later. But then a different antibiotic got big reaction with increased pain in my worst trouble spots.
Just take a deep breath and step into treatment. Just take it one day at a time. No one can tell you exactly how it's going to go, as each person is different.
You might want to ask your doc about Babesia. It is a known and recognized coinfection of Lyme, and my PA told me they often see chronic low grade fevers in people with underlying Babesia. (I did not, even tho I have it.) Tests are false negative up to 3/4 of the time, so getting tested multiple times is not unreasonable. (I tested false negative 3 times...never did test positive. We found it using herbal treatments for it.)
I am so glad you have progress!! I suspect your immune system is working quite hard to fight off Lyme. I am hopeful that you'll respond quickly!
One thought to file away... If this doc wants to stop treatment while you still have symptoms, then you need to get to an LLMD immediately to complete your treatment. LLMDs say that relapse is best avoided by continuing antibiotics for at least 8 weeks after all symptoms resolve. The little buggers are famous for laying low and hiding out, and then coming back out to party once the antibiotics are all gone.
You don't have to have IV antibiotics if you don't want them, you can tel the doc you'd prefer oral ones.
Anxiety is an extremely common symptom of lyme disease. have you been tested for other tick borne infections? Bartonella is another very common infetion that people also catch from ticks and it causes even worse anxiety than lyme.
If you are more anxious than usual you should probably think hard about possible causes for that in your life. if illness is the only cause you can think of to explain it, then I think that adds weight to the lyme diagnosis.
There's a web page here which says stres can cause a fever up to 99.5 in rare cases, normally only 99 and not above 99.5
http://www .calmclinic. com/anxiety/symptoms/causing-fever
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