Suggestions anyone on how I can get over the last of my illness?

LP - what are your lingering symptoms? Is it possible they are symptoms of hypothyroidism? Maybe once you're thyroid gets in treated, you will see improvement.

I completely understand the challenges with that last percentage of healing and am sorry you're also dealing with that, LP.

I echo Girlie's question about your remaining symptoms. It's possible that they are being caused by your hypothyroidism.

How long have you been taking thyroid supplements? What do your thyroid labs look like these days? Truly, most people taking optimal doses of thyroid suppplements will have TSH well below 1. And, most importantly, they will have Free T4 levels near the high end of the range (or slightly elevated)...and Free T3 levels around 75-100% of range.

Your comment about a sluggish immune system most likely has merit. What are you taking to support your immune system?

Stuff like Cordyceps mushroom, ashwagandha, rhodiola rosea can only help.

It might not be a bad idea to take some NT Factor for 6 months to repair your mitochondria and restore your energy.

Per Dr. Burrascano on page 29 of his Diagnositic Hints and Treatment Guidelines:

"8. NT-FACTOR
This product addresses the mitochondrial damage thought to underlie the metabolic dysfunction associated
with chronic diseases which, in patients with tick-borne illnesses, is manifest by fatigue and neurologic
dysfunction. It is the single most reliable agent I have found that can give noticeably increased energy levels.
When supplements known to support neurological function are added (see below), improved cognition and
memory often result. Effects will be noted in two to three weeks. It also contains high quality prebiotics and probiotics. Available from Researched Nutritionals."

www.ilads.org/lyme/B_guidelines_12_17_08.pdf

I bought mine from Dr. Hyman's online store.

And, have you ever tried L-arginine? This increases NO levels in the blood which is inhospitable to both Bartonella and Babesia.

Buhner writes that L-arginine alone can often clear the symptoms of these infections (this is per his latest coinfections books)

Finally, have you ever treated for Babesia (even herbally)? It's possible to have an asymptomatic Babesia/Babesia-like infection that impedes healing. Dr. Horowitz speaks of situations such as these....and that's what seemed to be impeding my healing and that of rowingmom's and her daughter's.

Hope you find that missing piece to your puzzle!

Please remember that L-arganine can cause EBV to flare for some. So watch your fatigue levels. L-Lysine helps bring EBV back under control.

And I was going to say the same as CD about asymptomatic Babesia. We've been seeing more and more asymptomatic Babesia (and Bartonella actually) lately. It could be the key you need to heal the rest of the way!

Best of luck - let us know how you are doing!

Some good points were made here and the ozone therapy thread about "cures, feeling 95% better, yet still on antibiotics." Aside from taking a normal daily vitamin, calcium supplement, or other low-dose nutritional supplements, it cannot be said that someone is "cured" if they need to continue taking antibiotics. The same can also be said for herbal protocols.

Cured means no symptoms - ever again. Remission means there are no symptoms at the present time, but the possibility for a recurrence exists. Sequella means secondary, residual effects from the primary problem. Trying to determine where someone is in this process is likely impossible. The only truly proven method to make this determination is "tincture of time."

The most helpful information can be seen beneath the moderator's posts. Here they list what they used for treatment and over what period of time. Herbal protocol postings are helpful, but unless the doses are listed it is not as useful to other members. Maintenance doses would be consistent with someone who believes that their disease is in remission. Again, only time will tell about the status of their disease, whether they think they are cured, or if they continue to suffer from some after-effects of the infection(s).

In regards to sequella, it is important to list these problems as well, i.e. restless leg syndrome, muscle wasting due to neuropathy, etc. Some of these may have been the result of the infection and still persist, yet everything else appears to be fine now.

The more specific that members can be about what they took, how much, when, and for how long would be invaluable for all. This is apparently one of the goals of the MyLymeData bank that has been created.

Kott

Happy some of my ideas might be worth your consideration, LP :)

My lingering issues remain at peripheral nervous symptoms. At this point, they are less intense and less frequent but still daily. I only notice them when sitting still and I don't always have them. A fair summary of the symptoms is: tapping sensations in my lower legs and an occasional buzz in my left knee.

I still herx on occasion and that includes numbness on the left side of my mouth, an increase in knee buzzing along with tapping sensations in a couple of other body areas.

I accidentally took a double dose of Houttuynia the other day and wow. Stinging/shocking sensations in various places along with other stuff. I obviously have a ways to go.

I never had any symptoms of Babesia, either - except for a couple herx symptoms that overlap between Lyme and Babesia. I'm glad I opted to treat for it.

Oh, now that I know you're taking desiccated thyroid, please know that optimal TSH in that situation will most likely be suppressed (significantly below-range.....as in something like <.005)

Exogenous T3 causes suppressed TSH (this makes sense if you think about it....if the body has optimal amounts of the active hormone (T3), the pituitary no longer has to produce TSH (thyroid stimulating hormone).

Now, you are taking something like Erfa, Armour or NatureThroid - right? Not some bovine supplement, I hope.

If fatigue is your only issue, your hypothyroidism could very well be to blame. Hypothyroidism also suppresses immune function.

It takes easily 6 months and often up to a year to balance a thyroid (sorry). However, if your doctor increases your dose in a timely manner, you should slowly start feeling better.

Truly, after taking abx for as long as you have, I think your immune system (aka your gut) most likely needs some help. I suspect you've been diligently taking probiotics. Have you ever considered home-made kefir? (it's really, really easy to make and a small bowl provides as many as 5 TRILLION organisms and something like 40+ different strains).

I wonder if you could have a yeast overgrowth after taking so many antiboitics, which can cause a lot of symptoms. Have you ever taken coconut oil first thing in the morning? If you have a yeast over growth you will herx with a small amount. Something easy to try.

LymePickle said...
That is a good point about babesia... Maybe the CSA blend from woodlandessence would be a good thing for me to consider. I never did test for it, have no symptoms of it at all, and my LLMDs said not likely an issue for me. But good consideration.

K was also totally asymptomatic for babesia and tested negatively through Igenex for both babesias.

Our LLMD did a 5 month round of malarone (along with minocycline, plaquinel, tindamax and azithromycin) thinking that perhaps a babs-like-organism was holding her back from complete healing from bartonella. We saw an improvement in cognitive/function function with this protocol, but it didn't last. There was no herxing. This was when our LLMD pulled the plug, feeling there was nothing more she could do for K.

It wasn't until I trialled CSA ($40 per bottle) at 15 drops BID that K finally developed some babesia herx symptoms (air hunger, thigh pain, chest pressure, dry cough), and back to the LLMD we went and got a clinical diagnosis of babesia (of some sort). It didn't take long after that for the remaining 10% of her bartonella symptoms (shin pain and headache on exertion) to clear.

Both K and I remain on low doses of Buhner's complete bartonella protocol (minus the l-arginine) along with CSA, red root, rhodiola, ginger and curcumin.

I would trial CSA if I was you. It's a cheap experiment that could provide some important information.

cd- wow a year? Jeez that's an awfully long time. I am taking desiccated thyroid. I was told that here in Canada it is called that or just Thyroid. This is the same as armour thyroid in the US.

I take 100 Billion CFU per day. My gut is fine now but damaged, the damage isn't progressing though as far as I can tell. How do we make home made kefir?