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~6 month infection, 4 months abx, advice on next step...

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Posted 12/18/2012 2:55 AM (GMT 0)
Very new to this forum. Really appreciate all the kind folks who share so much valuable information. While I have been lurking a fair amount of time I'm hoping to get some input on my situation.

My best guess is that I had been infected for about 4-6 months before being diagnosed with Lyme via western blot. During that time I got sick 2 or 3 times with some fatigue and loss of appetite, but never lasted longer than a week. The last month and a half was horrible, bedridden with fatigue and very low appetite that didn't go away. Lost about 20 lbs.

Thankfully got the diagnosis and started seeing a LLMD here in central NJ. Lots of abx for about four months up until a week ago...amox, tindamax pulsed, suprax, doxy. Some dietary and supplemental approaches...no sugar, lots of lemon water, herbal detox, immune support supplement, probiotic, garlic, fish oil, green tea, vitamin d, b complex. Also light exercise every few days. Seeing a great therapist for depression and making huge gains emotionally.

Have made some physical improvement during this time, appetite almost normal, some good weeks some bad with the fatigue and achiness, been able to start working again part time. My doc took me off the antibiotics last week and I'm a bit nervous about stalling any recent improvement.

I am so grateful for the gains I have made but still struggle day to day with moderate to serious fatigue. Any advice at all on my next steps would be greatly appreciated. Seems like I have a lot of options to choose from and it's a bit overwhelming. Wait and see how I do without the abx? Start one of the many herbal protocols members here seem to have success with? See another LLMD (planning on it just for a second opinion)? Other dietary approaches?

Again, many thanks.
Posted 12/18/2012 4:53 PM (GMT 0)
Glad to hear you are making progress. The only thing I would be careful of is knowing when you got the infection. Lyme can tend to hide in our body and surface upon a stressful event. That being said, hopefully you have only had a short time and can thus rid it quicker. Four months usually will suffice if it is a short term infection but the rule of thumb is to treat for three months after the last symptoms disappear. Does your doctor know you still suffer from the fatigue and took you off antibiotics anyway?

Lyme fatigue is really horrible. I have found cats claw to really help my energy level. Perhaps you can see if your dr. would recommend that. Make sure you get enough rest because dragging yourself around only puts more stress on the body while it is trying to recover.
Posted 12/18/2012 6:28 PM (GMT 0)
Did your doc explain why he stopped the abx while you were still having such symptoms? The most knowledgeable LLMD's recommend that treatment continue until all symptoms have been resolved for 2 or 3 months.

Personally, I would suggest that you see another LLMD. Although the herbal approach is more than sufficient to treat these infections (that's how I'm treating), it seems pretty weird that a doc would just stop treatment in the middle! Chances are you still need more treatment. The wait and see approach is not one I would advise, as it gives the bacteria time to reactivate and start doing damage again.
Posted 12/18/2012 8:33 PM (GMT 0)

HerrJager said...


I am so grateful for the gains I have made but still struggle day to day with moderate to serious fatigue.

If fatigue and depresion are still an issue it's likely your immune system is not right.
I'd seek a second opinion from a seasoned, true llmd. Lyme diagnosis can only be clinical and not based on wb. So too the decision to interrupt treatment. Breaks are ok and can even help but you want to avoid the situation of a relapse.

A few question marks you may want to consider:
- any co-infections?
- are nk cells and macrophage activity normal?
- parasites therapeutic probe?
- blood hypercoagulation issues?
- heavy metals?
- are your reduced glutathione levels normal?
- inflammatory/cytokine markers out of range?

Post Edited (rns) : 12/18/2012 1:36:26 PM (GMT-7)

Posted 12/19/2012 12:01 AM (GMT 0)
Springsjean, my doc seemed to think that since I have made only moderate progress over four months the abx were not doing the trick and may have helped all they could. Wants to try to "build me back up" without em and deal with any "chronic fatigue" type symptoms with other methods. Definitely a bit puzzling to me, I even mentioned to her that November had been a pretty positive month of recovery but she still made the change. From what I read online and hear from others she is a well respected LLMD in the area, however I am scheduled to see another one tomorrow afternoon. Thank goodness. I will absolutely look into cats claw as well.

Traveler, she gave the above reasoning. Like I said, confusing to me too, especially since it seems that my recovery has picked up in the past month. Why mess with anything now doc??? :)
And like you and Springsjean mentioned I'm nervous about being off the abx for too long. I will bring all these concerns to the new LLMD tomorrow.

Rns, fatigue is definitely an issue but the depression seems to have subsided for the most part. I will absolutely bring along those questions and many others tomorrow.

Thank you all so much.
Posted 12/19/2012 2:36 AM (GMT 0)
My LLMD said that I will likely be on abx. for 1 yr. She said that typically the fatigue is the LAST symptom to subside from what she sees in her patients.

She is my new LLMD. I went to her because I had been on abx. for 3 months and was not seeing improvement and actually felt like I was worsening. When I saw my new LLMD she said that she believed that I wasn't improving because I have a co-infection, Bartonella, that wasn't being treated. She diagnosed me clinically w/ Bart. Now that I'm on her new abx. protocol, I am doing much better. Still have rough flares, but they are less frequent and last for a shorter amount of time.

Has your LLMD discussed co-infections w/ you?
Posted 12/19/2012 1:43 PM (GMT 0)
Please do let us know what the new LLMD has to say!!
Posted 12/20/2012 12:50 AM (GMT 0)
Before I get into the appt with new LLMD, a few things I wanted to note:

-My CD57 test a few months ago was normal, don't remember the exact level but the doc gave it the ok.

-I have a pretty persistent vitamin D deficiency. Been taking a supplement for ~2 months.

-Bartonella test neg, Mycoplasma shows past infection. Honestly can't remember if I was tested for the other co-infections.


So my visit with the new LLMD went very well. Practically zero wait time (was waiting for two hours with my last doc, ughhh) and very kind staff. After going over my history he started checking me out. Here are the main takeaways:

-He noticed a white film on my tongue and said it was a type of yeast infection. Having me start acidopholus, I have been taking some other probiotic (iFlora). Sounds good.

-"Did anyone ever tell you that you have a heart murmur?" Yikes, no. I did have an echocardiogram done recently and it came back normal. Still, I'll bring in a copy when I come back to be safe.

-Took blood to check for some more stuff, co-infections and hepatitis c.

-Back on the Monodox (doxy). Higher dosage, "a killing dose" he said. When I asked about being taken off the abx he was on the same page as the rest of you. "We treat you until the symptoms are gone", plain and simple. Expects me make a full recovery.

-Had already cut out sugars, but he also stressed a low-carb diet.

Such an encouraging visit. Optimistic about this next phase.
Posted 12/20/2012 12:55 AM (GMT 0)
Awesome!! Sounds like you have a good doc! You'll be healing away in no time!! Please don't forget to detox though! That will lessen the side effect
Posted 12/20/2012 1:01 AM (GMT 0)
Thanks a million and yes! I have been using burbur herbal drops for detoxing and mentioned it to this doc. Of course, he said keep at it. Trying a different one this month to mix it up (Flora Flor-Essence Herbal Tea Blend).
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