French girl, very sick

Hello everybdy.
Sorry for my poor English, I am French.

I am reading this forum for more than a year now. It is very helpfull.

I am very sick with neuro symptoms since the 17th of july 2016. Probably bitten when I was 11 or 12.

It is hard to find a good llmd in my country. I had different courses of antobiotics but never a good teeatment plan the first year of treatment. Then my doc said stop and it was the beginning of the hell.
In january 2018 I went to St Georg Klinic for hyperthermia, with no result. I was even worse, because not only lyme was still there, but bartonella ( never adressed) flared. A new doc put me on rifampin and zithromax for months. My symptoms didnt improve but my immune system began to be a lot better.
Unfortunately, this doc had to stop his practise because he treats his patients with long term antibiotics and it is not good in France. So in august, I was off atb.
I started alinia in july too. I was quite fine during 2 weeks ( I took lyrica since july too and think it was helping a little), then bam!, big relapse and my immune system was worse than before the rifampin treatment.

I found a new doc in the end of december, who prescribed me levaquin ( day 4 tendon pain so stop), doxy 200mg and zithro 250mg. I switched levaquin to bactrim. But I am again worse than before.

I saw this doc for the second time yesterday. He put me on rifampin again, with tetralysal, and bicillin shot 1,2MIU once a week for 4 weeks.

I had a microscope and can see the spirochetes very well, I have tons of them, normal form, cystic form etc.

Today I feel like I am dying, the pain in my back and my rib cage is horrible( endless muscle spasms), and all my right side is weak and in nervous pain.
I have a lot of malaise, anxiety, depression, I cant bare the pain any longer.Ivhave these symptoms for more than a year niw and they just got worse and worse. Last month I could walk 1 mile, and now i am bedridden.
I have a cbs mutation, so classic detox is not simple, I can t bare my IR sauna because my skin is so sensitive ( allodynia), and I am sure that it is not a herx but a flare of lyme because it is not treated since august.
Unfortunately, rocephin did nothing, I hope that the bicillin shot will be usefull ( first on monday).
Sorry for this long and bad story, but I need some help, or ideas or...
Thanks

Thank you veru much.
I had an HLA testing and I am mold susceptible and lyme susceptible too.

I had tried Buhner, max doses, when I was off atb but nothing seemed to function. We have a website in poland where we can buy these herbs. I took andrographis, cats claw, knotweed, houttuynia and sida acuta.
Yes, PC is well known, but he is overbooked. My llmd seems to be good, it is just me and my very low immune system...
I live in an old house ( built in 1830). It is possible that there are molds, I know this problem but no doctors know about mold in France. I have some questran ( cholestyramine).
How can we know if we have MCAS, I heard this before but again, here doctors are not aware of this...

I will look to your links, thank you very much.

Hello from France !
Thank you for the informations. I know my cbs mutation since june 2018. Before, I ate onions, garlic, took ALA, NAC, gluthation, a lot of milk thistle during 2 years, well all was wrong !
I will have a bloodwork on monday to test my ammonia level.
Epsom salt baths were hell for me, but I thought it was a sort of herx. Now, my detox is dandelion tea, red root tincture, charcoal at night, a lot of water with lemon juice, burbur pinella, and IR sauna when my neuropathies are not too bad.
I have ordered some yucca and ornithine on iherb.
I read a lot about Astroman and his work on trigger points, I tried several time, but my muscles react badly, same way with heat ( bath, sauna...), I always end much tighter. It drives me crazy, my back is like a piece of wood...
Today I took my rifampin, and 2 hours later, bam, cat scratches on my neck, chest, arms... but I don t know if muscle spasms can be bart related or more lyme related ( I think it is a neuro symptom because muscle relaxers don t work, only Klonopin but I am allowed to take just 0,5mg, and the usefull dose was 2mg per day).
My llmd thinks I have babesia too ( test neg).

Could you fly to see a doctor in the US? I know of a girl from France who was seeing Dr. J in Washington DC.

I know Sonya L. who was seeing Dr J (he is Mandy's doctor in under our skin, am I right?).
I dream to see him or dr H. because of their integrative cares.
Unfortunately, the hyperthermia costed all my money (15000€, =20000$). I can t work anymore, and my family doesn't understand my illness. My father could pay, but he doesn t want to do.

We can t have minocin in France ( just in hospital), but I ordered my alinia on alldaychemist website and I have seen that they have generic minocin.
Someone know if we can trust it is really a minocin product ?

Bullekideambule said...
I know Sonya L. who was seeing Dr J (he is Mandy's doctor in under our skin, am I right?).
I dream to see him or dr H. because of their integrative cares.
Unfortunately, the hyperthermia costed all my money (15000€, =20000$). I can t work anymore, and my family doesn't understand my illness. My father could pay, but he doesn t want to do.

Yes Dr J is Mandy’s (who is still doing great) dr. in Under Our Skin.
I feel very fortunate to be seeing him.
I’m sorry to hear your father doesn’t want to support you.

But remember there are many people who have healed and never had Dr J or Dr H treating them.

Bullekideambule said...
How can we know if we have MCAS, I heard this before but again, here doctors are not aware of this...

I would describe it as allergies. When I got Lyme disease, pollen and many other things that never bothered me before would cause an allergic reaction. I couldn't figure out why I suddenly had so many allergies. It went away with antibiotic treatment.

how long did you take alinia ? months , weeks, days ?

Did alinia help you ?

how did you feel with alinia ?

did you take alinia 500mg twice daily ?

are your eyes dry ?

Thanks fasthealing

Treatment might be a bit too aggressive, could try pulling back and going more slowly if possible. Have you ever tried cymbalta? Heard this can help with nerve pain. I took gabapentin which really helped but I think it is similar in certain respects to lyrica.

Here is a video I made this morning, my blood under the microscope.
The bicillin doesn t seem to kill them !

https://youtu.be/0-xo-nsbsy0

Post Edited (Bullekideambule) : 2/11/2019 9:25:06 AM (GMT-7)

gettimg worse and worse could be herxing.

You will know if you back off and see what your baseline is.

He's taking Rifampin with it.


BTW if Rifampin doesn't work...or only gets you so far...try Rifabutin. It's been kicking my butt after a long duration on Rifampin.

How long did your daughter treat in 2017?