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Ugh. Please give me some other ideas?

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Posted 4/27/2015 1:41 AM (GMT 0)
I'm month 9 of abx treatment, and month 5 of heavy abx (3,400 mg of tindamax, planquinil, Biaxin and ceftin). I also take vitamins and glutathione. A laundry list

What could I be missing here? CDC + for lyme. Low CD 57. Co infections were all negative and I'm having a hard time even narrowing down what I could have based on symptoms.

Where would you go from here? Or tests you'd ask for?

I know my adrenals are ok, I had the saliva test done already.

My blood work is otherwise normal

Symptoms:
Brain fog (now it 80% there, and 20% ok days)
Joint pain is a more recent symptom! Same with muscle fatigue
Extreme exhaustion since the beginning
Headaches
Bad memory and concentration. In a way that's gotten worse
Some twitching since the beginning
Posted 4/27/2015 2:17 AM (GMT 0)
Hi Cappuccinocurls,

Cool name. It took me a second to get it!

It really does sound like Lyme to me. Have you tried any other antibiotics? If not, are you slowly improving, even if they are very subtle changes?

I think it comes down to finding the right cocktail of meds for you. If there are slow, but steady improvements, that is good. If not, it might be time to change up the Biaxin and / or Ceftin at least. Ceftin should be good for neuro Lyme, but maybe another med in the same class will work better.

Sometimes a co-infection will hide out if Lyme is the more dominant infection. As you treat the Lyme, another infection may or may not come out. The extreme exhaustion makes me wonder if you might have Babesia, which can cause it. Lyme rarely travels alone. Sometimes, another co-infection will hold up treatment until you address it.

Epstein Barr Virus can cause severe exhaustion too.

Sometimes, fungal infections, such as Mold or Candida, can prohibit progress. They can cause brain fog and fatigue. Have you ever had any mold exposure?

I hope you figure it out!
Posted 4/27/2015 4:23 PM (GMT 0)
As Lymie Girl asked - have you been checked for Mold? Candida?

On your saliva test for your adrenals, was it collected just once during the day, or multiple times during the day?

Forget what the blood tests told you about the co-infections, testing for them is less reliable than for Lyme disease. What do your symptoms tell you about which infections you are dealing with? It's possible that another infection has a higher bacteria load that needs to be reduced first, before you will respond to the meds for Lyme.
Posted 4/27/2015 10:45 PM (GMT 0)
I did the saliva test, 3 times over the course of the day. I did take an accidental 20 minute nap but my doc said it wouldn't effect my results.

I have no idea what co infections I could have. But to answer the questions further, I did feel like I had some positive changes. Lately I feel like I am back at square one, or close.

But the brain fog is coming and going.
Joint pain is the newest symptom. Getting up and down the stairs is hard.
Some more twitching
And my memory is getting worse
My sleep is also not as solid. But melatonin helps too
Posted 4/27/2015 10:48 PM (GMT 0)
Bump....
Posted 4/27/2015 11:03 PM (GMT 0)
I hope some other members will chime in because the only things I can think of is that you need to increase your detoxing or maybe a co-infection of Bartonella, yet that doesn't sound right either.

How long have the changes you mentioned been going on?
Posted 4/27/2015 11:17 PM (GMT 0)
I'm still thinking maybe Babesia due to the severe exhaustion and muscle weakness. Possibly Bart due to the Neuro symptoms. It is hard to say because your symptoms seem pretty focused on Lyme.

Where did you get infected? The US or elsewhere?

You could try some challenge herbs to try to bring out co-infection symptoms, houttinuynia (hope I spelled that right) for Bart; or Cryptolepis or Artemisia for Babesia. The problem is that any of these might bring out Bart or Babs. So you have to look at any symptoms they bring out to see if they are Bart or Babs. Just an idea for consideration.
Posted 4/28/2015 1:10 AM (GMT 0)
Thanks all! No idea how long I've had this. I have lived on the east coast 95% of my life Including DC and the Hudson Valley, MD, etc.
it got worse 3 -4 years ago after I needed my gallbladder out. And I spiraled downhill.
I don't remember a tick bite.

The joint pain really started more hard core altering a month of adding in the 4th abx. Brain fog was my worst symptom last year this time, and now it's a combo of joint pain/exhaustion/brain fog. All just as bad.

My doc is good in that if I asked for a certain test she would support it.

My MFHTR is moderately deficient (is that the term?). At least it is according to 23 and me. But I am detoxing as much as I can handle (that's hard too...I feel like passing out in detox baths and can't handle more than 8 minutes at a time). Glutathione doesn't do a Thing
Posted 4/28/2015 1:24 AM (GMT 0)
Were you taking glutathione orally? Iv is better if you can get it - or try ALA - Alpha Lipoic Acid. Dr. Horowitz says that it's a precursor to glutithione and that's what I used.

Also be sure you are utilizing as many detox pathways in your body as possible - it's hard, but can be done. I had to make it my daily "job".
Posted 4/28/2015 1:46 AM (GMT 0)
I'm taking liquid glutathione from research nutritions. It's supposed to be gold standard. And I'm on alpha Lipoic acid too.
Posted 4/28/2015 1:46 AM (GMT 0)
What detox pathways are you referring to exactly traveler?

Like through skin, liver, etc.? How often should you detox and what should you use?

I try to rotate my charcoal and cholestyramine, plus I take chlorella and Pinella everyday.
Posted 4/28/2015 1:57 AM (GMT 0)
yes, I was referring to dry skin brushing for help in detoxing through the skin and helping to move the lymph to help you move more toxins. Epsom salts and peroxide soaks are amazingly have been helpful for me too. Same with oil pulling. There are many ways to help the body detox.
Posted 4/28/2015 3:30 AM (GMT 0)
Dr. H says that Babesia (Duncani and Microti, as well as other strains) is growing very rapidly in the Hudson Valley. It can cause Lyme symptoms to get much, much worse and can cause really bad headaches, exhaustion, muscle aches, shortness of breath, sweats and chills, joint pain, ect. Testing for co-infections is not very reliable. I would definitely talk to your LLMD about Babs and possibly Bart.

Here's a link to a great discussion by Dr. H. I was going to (and may still) post this because I think a lot of people are wondering if they might have Babesia. There is a video so you don't have to read through the transcript if you find it difficult.

http://www.wildcondor.com/dr-horowitz-on-babesiosis.html
Posted 4/28/2015 4:50 PM (GMT 0)
A great interview, thank you for sharing that, Lymie Girl!
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