HealingWell
Search Close Search
☰

New test results. Now what?

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 5/4/2017 11:17 PM (GMT 0)
Found out from LLMD yesterday that I am positive Ehrlichia and Bartonella in addition to the Lyme diagnosis a couple of months ago.. I also have elevated mercury.
Have been taking doxycycline for 7 weeks. Some symptoms have improved but ear ringing is still terrible, feet still hurt, still fatigued, and can't sleep.
LLMD advises 2 more months of doxy and then retest.
Anyone have advice for helping with above symptoms?
Posted 5/4/2017 11:31 PM (GMT 0)
Hi mareish -

Is your LLMD going to add anything to the doxy to treat the Bartonella? Treating with just one antibiotic - even for lyme isn't recommended.

What will your LLMD test you for in two months? Another lyme test? Unfortunately there isn't a reliable test to determine whether or not you're in remission. Symptom resolution is what we use.

But, you will continue to have symptoms until your Bartonella has been treated.
Posted 5/4/2017 11:31 PM (GMT 0)
Hi mareish -

Well, info is good to have. Even if it is a little depressing.

Your symptoms could be due to many things - might just be a matter of trial-and-error to explore what is causing them, what can help them. What are you doing for detoxing? Often, this is the culprit of symptoms. Controlling inflammation helps, too.

Sleep issues is often an endocrine/adrenal imbalance that is triggered by an infection or maybe heavy metals. Have you ever had your adrenals tested (24-hr saliva test?)

Fatigue could also be due to the illness, the treatment, not enough detoxing, hormonal imbalance, not getting nutrients from diet, pushing yourself too hard, pushing the treatment too aggressively, not sleeping at night... or high viral load, which can also overwhelm your immune system and challenge your treatment.

Sometimes LLMDs like to have us on both abx and herbal antimicrobials in order to provide broader coverage.

-p
Posted 5/5/2017 12:47 AM (GMT 0)
Girlie, The LLMD is not adding other antibiotics, and the testing in 2 months is CBC, metabolic panel, mercury (since it is elevated on recent test), and Lyme igm and igg, and bartonella and ehrlicjia again.
I'm seeing who I think is the main guy in SF. Was under the impression he knows what he is doing. Perhaps not???

Pirouette, Thank you for the info. No I am not detoxing. Will look into it. I am having a hard enough time just trying to eat well, take antibiotic, probiotic, etc. Sounds wimpy, I know, but energy to do much of anything is at a premium.
Posted 5/5/2017 1:10 AM (GMT 0)
Re: detoxing -

I know exactly how you feel - you're treading water, barely. But here's the thing about detoxing - most of us need to help our bodies detox, particularly on antimicrobial therapies because our bodies are not eliminating toxins as well as they should (which might hold clues as to why some people get really sick from Lyme & co and others don't).

But anyway, add in an antimicrobial killing spree, and your body becomes flooded with toxins, debris and dead stuff it can't get rid of. So the goal is to detox at the same pace you are killing stuff. In some ways, detoxing is as important as addressing the infections. You might do well to slow things down, take some time to get a detoxing protocol implemented, and then resume treatment - could help your overall progress.

-p
Posted 5/5/2017 1:52 AM (GMT 0)

mareish said...
Girlie, The LLMD is not adding other antibiotics, and the testing in 2 months is CBC, metabolic panel, mercury (since it is elevated on recent test), and Lyme igm and igg, and bartonella and ehrlicjia again.
I'm seeing who I think is the main guy in SF. Was under the impression he knows what he is doing. Perhaps not???

Pirouette, Thank you for the info. No I am not detoxing. Will look into it. I am having a hard enough time just trying to eat well, take antibiotic, probiotic, etc. Sounds wimpy, I know, but energy to do much of anything is at a premium.

Hmmm...I understand all the testing..except retesting for Lyme - because the WB is not reliable. As long as he understands that if you test negative...it doesn't mean you are clear of it. And you can test positive on a WB even if you are in remission. We can continue to produce the antibodies. And if the Bart and Ehrichlia are WB's - the same applies.

I just recently retested for bartonella...but this is after I tested positive on a PCR AFTER a year if treatment. My LLND agrees that a negative test result won't tell us anything, but a positive will (since it's a PCR test) The PCR looks for DNA of the bacteria - if it's there - no denying it.

Are you already taking anything to get the mercury levels down?


Re: detoxing - there are some you can implement without too much preparation. Here are a few ideas:

- Drink minimum 8 glasses of water daily.
- squeeze fresh lemon juice into some glasses. ( good idea to drink with a straw - it helps bypass the teeth - the acidity can damage tooth enamel)
- Take a liver support supplement - daily
- purchase something for brain detox - Nutramedix Pinella or Jernigan's Neuro-Antitox CNS/PNS
- Take warm Epsom salt baths. Start off with just soaking for 5 minutes...and slowly increase the time.
- Dry brush your skin before the baths.
- Take a binder

You will want to start with just a few detoxes..and every 3-4 days add in a new one.
I would get the liver supplement going right away, along with drinking water....(and your probiotics)
Posted 5/5/2017 3:21 PM (GMT 0)
I would be very concerned about a LLMD that only uses Doxy alone. Doxy is known to create more round body forms of the bacteria, and mono therapy is not recommended for any of the infections.

Girlie already covered the additional testing, which also makes no sense.
Posted 5/5/2017 4:34 PM (GMT 0)
Girlie, Thanks for the ideas. The only one I have been doing is the water drinking. Will begin to add the others.

Traveler, I think you likely know who it is I am seeing. Makes me nervous to think the treatment I am receiving may not be appropriate.
Posted 5/5/2017 4:44 PM (GMT 0)
The one email from you I can find says that you were in contact with Dr. S - is that who you are seeing? If so, I'm pretty amazed that he's doing this!!

You can switch LLMD's, or you can add in an herbal/alternative protocol to help keep your treatments moving forward.

I'm afraid I don't have any favorite LLMD's that I wouldn't criticize for poor treatment - not even one. We count on them to practice the basics, and knowing that Doxy creates more round body forms and monotherapy is never recommended are the basics.
Posted 5/5/2017 5:04 PM (GMT 0)
Traveler, Answer to your question is, yes.
Posted 5/5/2017 5:20 PM (GMT 0)
Oh wow!!! I"m so very sorry!!!!! That's a shame for the whole Lyme community! He was at the top of doctors that understood these infections! Maybe he's tired of fighting 'the powers that be', or something similar?

I don't know, but I wouldn't see a doctor (or allow my hubby to see a doc) that used only Doxy for chronic Lyme, or left them on it for months at a time.
Posted 5/5/2017 5:40 PM (GMT 0)
So, if I'm understanding - you've been on doxy for 2 months...and he wants you on for another 2 months? And nothing to be added.

If that's true...time to switch.
Posted 5/5/2017 5:44 PM (GMT 0)
Another 3 months. I thought he was "the" guy. No idea where to go next. Certainly not back to the ID doc.
Posted 5/5/2017 5:49 PM (GMT 0)
For bart and erlichia you can add rifampin if your liver and adtenals can hang . It can be ordered online ...im having some luck with hh2 and allicin...bart is a gram negative and erlichia is a rickettsial intercellular immunosuppressive
Posted 5/5/2017 5:56 PM (GMT 0)
Mareish, start a new thread asking for recommendations from other members. You already have your email enabled, so all you have to do is post the area you are looking in as well. We have some really awesome members that will share information in emails about LLMD's.

The mods (and anyone else) can help keep your post bumped up.
Posted 5/5/2017 11:52 PM (GMT 0)
Forgot to mention that CD57 test result is 30.
What does it mean?
✚ New Topic ✚ Reply