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Not Lyme after all :(

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Posted 3/2/2016 3:07 AM (GMT 0)
I got another round of tests back and everything was negative, including all the coinfections, and since my c4a level wasn't high, my ND thought it wasn't a false negative. She thinks it's not Lyme.

I should be happy, and part of me is, but I'm back at square one now... They're checking some hormones, I guess that's their only lead of my horrible depression and fatigue. They also refuse to believe the doxy they gave me caused my severe dip in mood/fatigue which still isn't back to normal... Very frustrated. She had the gall to say maybe it was the weird weather we've been having.

Just venting I guess, but if anyone else has been here id be curious to know what your condition ended up being...
Posted 3/2/2016 3:16 AM (GMT 0)
Based upon a recent post of yours, I am under the impression that you had LabCorp testing for Lyme and co's - is that correct?

If yes, I would not rely on them at all - sorry. LabCorp doesn't even test for the bands most likely to produce a response and they don't even use the right medium in the petri dish.

And, there are more strains of Lyme, Babesia and Bartonella than tests available. That's why we continually come back to the need for a clinical diagnosis - one based upon symptoms.

Why isn't your LLMD trusting his/her clinical diagnosis? Even the CDC says Lyme is a clinical diagnosis and testing might back it up:

www.cdc.gov/lyme/

"Lyme disease is diagnosed based on symptoms, physical findings (e.g., rash), and the possibility of exposure to infected ticks.

Laboratory testing is helpful if used correctly and performed with validated methods."

We are seeing more and more LLMD's unwilling to treat without positive test results and patients are losing.

Would you consider seeing a different LLMD? Is the one you're seeing trained by ILADS? (and I know that doesn't necessarily guarantee anything..)
Posted 3/2/2016 3:30 AM (GMT 0)
Stacey, is your ND a lyme literate doctor?

You must be so distraught and rightly so. It is so very frustrating to be ill and not have a diagnosis.

I am so very sorry.

We need more information to help you.
Posted 3/2/2016 3:34 AM (GMT 0)
Stacey - do you have other symptoms besides depression and fatigue?

Maybe it would be worthwhile to have an Igenex test done - if it will help you.
Posted 3/2/2016 1:27 PM (GMT 0)
" They also refuse to believe the doxy they gave me caused my severe dip in mood/fatigue which still isn't back to normal' If they can't explain how this happened, then I'm not sure I'd trust their judgement on this matter either. Why? Because they don't understand how depression and anxiety are a part of these infections (not just Lyme) and how they can be the only presenting symptoms - even if they are ILADS trained. I was scoffed at and had dr's trying to give me all sorts of 'feel good' meds for more years than I care to remember because they couldn't see that I had Lyme and company.

Now, we aren't trying to convince you that you have Lyme when you don't, what we are trying to do is make sure that you don't have Lyme and are being convinced by doctors that don't have enough experience with this to understand these things. Some articles you should take a look at and maybe share with your doctor:

"Are My Anxiety and Depression Due to Lyme Disease?
Tick-borne illnesses imitate common disorders and worsen psychological symptoms."

/www.psychologytoday.com/blog/why-can-t-i-get-better/201311/are-my-anxiety-and-depression-due-lyme-disease-0



"Major depressive disorder (MDD) should be re-conceptualized as an infectious disease, according to a professor. A new article suggests that major depression may result from parasitic, bacterial, or viral infection. "
/www.sciencedaily.com/releases/2014/11/141114124307.htm?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+sciencedaily+%28Latest+Science+News+--+ScienceDaily%29



"The patients generally seemed to require higher dosing of antidepressants, benzodiazepines, or antipsychotics in order to function normally. Doses were reduced following antibiotic treatment and as the presumed signs of Bartonella infection remitted. All patients improved significantly following treatment and returned to their previously healthy or near-normal baseline mental health status."
www.ncbi.nlm.nih.gov/pmc/articles/PMC2100128/


There are more articles like this too.
Posted 3/2/2016 3:13 PM (GMT 0)
My c4a was normal. I have read that this doesn't have to be high in lyme.
Posted 3/2/2016 3:21 PM (GMT 0)
My C4A was normal as well, and I definitely have Lyme.
Posted 3/2/2016 10:18 PM (GMT 0)
Yes it was based on LabCorp tests which they know aren't the best, and they were planning on doing the igenex test next. But based on those tests, they decided not too. The rejection of the herx reaction is frustrating and makes me skeptical... At least one of the NDs there specializes in Lyme and they all collaborate, so I'm not sure how literate they are...

In the 25 things they tested to begin with they also found low progesterone, likely due to my tubal ligation a year ago, but I've had depression for 10 years so that might explain why it's been worse, but not the whole story.

I don't think I actually really have a lot of the other symptoms... I've been diagnosed with ADHD, depression, anxiety, bipolar 2, hypermobility syndrome, fibromyalgia, sleep apnea... I don't have consistent or "widespread" pain, so I think the fibro diagnosis is crap, I'm much more inclined to believe the hypermobility diagnosis, as I get frequent muscle strains but they're all isolated in time and location.

I don't really know what to do at this point, the depression just scares me because I'm close to nonfunctional and I don't have the money for childcare... We over drew our accounts like 3 times this week, no savings, were scraping the bottom of the barrel... Functioning just isn't optional for me right now, my kids need me and I can't afford to not work even one day :(
Posted 3/2/2016 10:26 PM (GMT 0)
I hate to see you pay for more negative tests and if you have lyme I believe you will just rack up bills and negative tests. Mine all were negative. I gave up on tests and decided to spend my money on treatment. I went with herbs. So this is an option. There are a lot of different herbal protocols out there.
Posted 3/2/2016 10:35 PM (GMT 0)
I agree with PeteZa. about 10 days after I started Japanese Knotweed I got a killer stiff neck and then some weird nerve pain in my elbow. Any reaction was validation for me. I think eleuthero is a good herb for depression.
Posted 3/2/2016 10:44 PM (GMT 0)
k07 is correct about the eleutherococcus. Also: Pasque flower tincture, coral root tincture, motherwort tincture, and skullcap tincture.
Posted 3/2/2016 11:54 PM (GMT 0)

Stacey Neglia said...
Yes it was based on LabCorp tests which they know aren't the best, and they were planning on doing the igenex test next. But based on those tests, they decided not too. The rejection of the herx reaction is frustrating and makes me skeptical... At least one of the NDs there specializes in Lyme and they all collaborate, so I'm not sure how literate they are...

I would definitely question just how Lyme literate they are. As was pointed out already I beleive, even the CDC says diagnosis is based on clinical findings, not the tests. And if they don't know about herxing, that would just almost convince me they know only as much as most ID docs. This doesn't mean they can't learn, but you need to be aware that they are really missing a LOT of things with you.


Stacey Neglia said...
In the 25 things they tested to begin with they also found low progesterone, likely due to my tubal ligation a year ago, but I've had depression for 10 years so that might explain why it's been worse, but not the whole story.

I don't think I actually really have a lot of the other symptoms... I've been diagnosed with ADHD, depression, anxiety, bipolar 2, hypermobility syndrome, fibromyalgia, sleep apnea... I don't have consistent or "widespread" pain, so I think the fibro diagnosis is crap, I'm much more inclined to believe the hypermobility diagnosis, as I get frequent muscle strains but they're all isolated in time and location.

What do you mean you don't have a lot of other symptoms? That seems like quite enough to me! Especially with serious depression issues!

Stacey Neglia said...
I don't really know what to do at this point, the depression just scares me because I'm close to nonfunctional and I don't have the money for childcare... We over drew our accounts like 3 times this week, no savings, were scraping the bottom of the barrel... Functioning just isn't optional for me right now, my kids need me and I can't afford to not work even one day :(

Since money is so tight right now, what about treating yourself with Buhner's protocol or some other natural protocol?

Like PeteZa said about herself, I too chose to forgo the testing twice now. I know that if I have these infections, I will either herx or just start feeling better when I'm in treatment. It's working out just like that yet again for me. I started treating Bartonella 2 weeks ago, and I'm having some improvements in my symptoms already (but I'm still waiting for my big herx that I usually have at 3 weeks).
Posted 3/3/2016 2:35 AM (GMT 0)
I don't mind going ahead with herbal treatment... Just want to make sure it's not something else, but no idea what else it could be... Sometimes I think my life just sucks and anyone in my situation would be tired and depressed but who knows :(
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