At wits end

Lymiemomster said...
Hello!
I hope you all can comment and advise us. I was on the forum a while back and have been watching most of you get better
My son got sick 2015. Diagnosed with positive Armin labs July 2016. Treated with doxy azithromycin artesunate allinia Buhner herbs-Japanese knotweed, houttuynia, sida acuta, gou teng.
Had a great year and a half probably 85%. In April started to get fatigued and wasn’t able to finish high school -devastating. Now he is extremely fatigued(mostly bedbound)
His other symptoms are new striae, sore loose jaw, visual floaters, hand tremors, insomnia.

What do you think it is?
-LLND is suggesting retesting with Armin Labs -but is bartonella a reliable test?

We have so little money that I’m not sure if I should do the test or order antibiotics from online pharmacy-do any deliver to Canada?

Should I save money for dr. J? But he will want new testing. How much is his initial visit and tests? We have no insurance because I had to quit my job to look after my son. What do you think??

LymieMomster - I was thinking of you and your son yesterday!
I recall he was doing very well but not completely symptom free the last time you were on here, right?

He was being treated by LLND with last name starting with a C?

It’s possible that he needs Babesia treatment - I was told by a LLND in Victoria that ND’s can’t prescribe the antimalarials - like Mepron and malarone.

I thought it was recognized he had bart? No?

I guess you know I switched to Dr J in DC.
This was after plateauing after two years with the LLND and he didn’t seem to have much to offer me -

I have since made some improvements.

Are you taking about Dr J in DC or the paediatric Dr J ?

No Bartonella isn’t a reliable test. The better test is galaxy labs but it’s expensuve.

Dr J in DC will not want testing for tickborne diseases.
He already has a positive lyme test right?

He will want labs done - extensive - majority are covered under our health care but I did have to pay for some that had to go to other facilities -

Dr j initial consult is more than dr c but it’s an extensive appt. mine was something like 3 1/2 hours long.

I had my initial consult feb 2018 - the next time I had to travel was in August of 2018. (There were also two phone appts - April and December)

For 2019 - I travelled in March and the next time I have to travel is March next year.

Did he continue to treat when he was at 85%? Or slacken off some?

I believe that’s what happens sometimes - we don’t get over the finish line and then relapse.

May need to treat babesia

Hi Girlie! So glad you are improving!!
My sons last Armin tests were in July 2016- do you think dr. J would want more current Lyme tests? What lab does he use?

Hi Walking in faith-the extreme fatigue brain fog is weird. He was positive for mycoplasma three years ago(and chlamidea pneumonia) what are the treatments for those and EBV?

Lymiemomster said...
Hi Girlie! So glad you are improving!!
My sons last Armin tests were in July 2016- do you think dr. J would want more current Lyme tests? What lab does he use?

Hi Walking in faith-the extreme fatigue brain fog is weird. He was positive for mycoplasma three years ago(and chlamidea pneumonia) what are the treatments for those and EBV?

No I’m quite sure Dr J would NOT want new lyme test labs. Once tested is all that’s needed. Symptoms/history is what he will look at now.
Save your money - I wouldn’t do any tests.
Btw - was he positive for lyme via Armin Labs?

You mentioned no insurance - u mean no extended health for medications?

The Dude Abides said...

k07 said...
What about dr. M R in Seattle?

If "M.R." is the same doctor I'm thinking about, he's now in Austin, TX. He relocated there in late 2018. Also, last I read, he was no longer working directly with patients. (A sad, recurring theme.)

Just an FYI, for anyone reading.

=========================

Dude - LLMD MR is going back to Seattle and will be practIcing again- I subscribe to his treatlyme online treatment book and he mentioned that.

Girlie said...


May need to treat babesia

I agree with Girlie and usually babesia is always the last or most stubborn coinfeciton to fight

Lymiemomster said...


Now he is extremely fatigued(mostly bedbound), visual floaters, hand tremors, insomnia.

These four symptoms extremely stand out for me as babesia, I get floaters and when I treat babesia affectively, I can get insomnia too.

Fatigue is 2x or 3x worse if he has both a borrelia and babesia infection, compared to just a borrelia infection.

Lymiemomster said...
Hello!

My son got sick 2015. Diagnosed with positive Armin labs July 2016. Treated with doxy azithromycin artesunate allinia Buhner herbs-Japanese knotweed, houttuynia, sida acuta, gou teng.

We're starting to learn that Babesia is very resistant to drugs and herbs just like Malaria.
https://news.yale.edu/2018/11/29/yale-scientists-develop-new-system-study-emerging-tickborne-disease

Yale.edu said...

The authors reported several key findings. They confirmed that Babesia duncani can replicate rapidly in human red blood cells, doubling in less than 24 hours. They also tested four current drugs that are used to treat the disease and found that the parasite has low susceptibility to these therapies.

Those drugs you listed can work for babesia, but you may have to cycle them or take them a lot longer than you suspect. It can take up to a 6 months to 1 year with antiparasitic drugs/herbs to cure babesia. Maybe even longer...

You may want to try boosting your son's thyroid with iodine/brazil nuts, as well as his adrenal system with other herbs. I suspect both the borrelia and babesia(specifically) attack the thyroid and disable it. Just be careful to start slow if you try doing this... As well as taking vitamin D, b12, and other vitamins.

A-Bab is a herb that many lyme patients with Babesia have success with, but it can make you feel like you're on speed: heart racing, major anxiety(pyschogical issues), sweats, etc... Start off slow if you try this.

You said you tried sida acuta, you may just want to buy the csa formula instead that has crypto, side acuta, and Alchornea cordifolia as an all in one tincture.

Post Edited (Charlie55) : 7/25/2019 12:23:57 AM (GMT-6)

Lymiemomster
Sorry to hear about your son.
I tested for Bart and the rest through ArminLabs with weak pos for Borrelia and negative for Babs and Bart.

Though clinically with symptoms of head pressure, striae (after doxy) sore jaw, night sweats, floaters, visual snow, short term memory, tremors, CNS issues, mood swings/anxiety and depressive episodes, heart palps and plenty more we diagnosed Bart and babs.

Bart is notorious (along with the others) for showing nothing on testing. I wouldn’t waste more money on testing just to find a pos as your sons symptoms already clinically suggest Bart (probably others) imo.

But yes, since youre on Sida already, you may as well get CSA (Crypto, Sida and Alchornea). I had the biggest herx after a month of being on it and was hospitalised because of it lol. But most of the babs symptoms went away and was well worth it - Bart now seems to be my biggest issue since babs is more or less on its last legs (though still treating with some symtoms).

Hope this helps... Please do keep us posted on how your son is going. Good luck!