If you knew then, what you know now?

I tried asking this in another post but I think I didn't word it correctly.

I suppose I'm fortunate in the sense that I can pinpoint the tick exposure/Lyme infection and we caught it early mostly bc we don't live in an area where Lyme is prevalent but traveled to one. I'm unlucky in the sense that we've now returned to completely totally Lyme-ignorant-inexperience land and it's an extra struggle to receive adequate treatment. I'm extra unlucky in that 6 of us have a Lyme Diagnosis! That's my parents, my husband, and I, my 8 year old and my 5 year old. I had some concerns about my 3 year old who had the most ticks on him and his early test had a lyme specific band (23), but he was on antibiotics for an ear infection at the time of our trip so perhaps it may have protected him a bit. Our baby had no lyme antibodies present and was carried a lot. In any case, the kids all received 30 days of antibiotics. The adults have all received longer antibiotics because of the accessibility of a LLMD, who does not treat peds. The kids seem better (and really never seemed too bad).

I'm the only one who is still has some lingering symptoms (mostly arthritis). I still have a month more on my antibiotic and intend to start some Buhner herbs and am considering some possible antibiotic therapy for Bart.

My question is that if you knew then (in the beginning), what you know now, what would you have done? Would you done more/less antibiotics? More/less herbs?

I just really feel like I'm still in that golden window to kick this thing before it gets chronic and I don't want to waste this chance for me or my family.

Thanks in advance for sharing your wisdom and experience.

I've been treating for 6 months......but I do wish that I had started this whole treatment thing with beyond balance herbs. I've added in BB-1 and EN-MC over the last 2 weeks and I've already seen a difference. Boy oh boy do I feel as though I wasted some time. I've been doing buhner herbs since June. Oh and I wish I would have done LDI for EBV sooner.

I guess the other thing is that I've been shooting in the dark since I've never had a confirmed positive lyme test, but have tested positive for reactivated viruses and mycoplasma. Igenex showed lyme negative so been treating based on symptoms and very happy that I did.

That would have been 25-30 years ago for me. Dr said it was not here, only in NE US. It was here WS/MN. The only ones treating here back then (before internet) , experimental lyme stuff, ABX, was U of M MN.

Late 80's , The U of M "cured" some people per news paper stories (I read) of this mysterious bug infection that seemed to replicate the "Lyme " disease found only in NE US. - Thats 'cause it was Lyme. The regular medical community chose to ignore this.

I should have camped out at the U medical facility in 1990.

lymebug said...

Girlie said...
If I knew I had lyme early on...I would have hit it hard with antibiotics right away.


Near the end of treatment, I would have added in Buhner herbs...and continued taking them for several months after stopping the antibiotics.

Girlie, Would you have pushed for IV antibiotics early on? Something about that really scares me.

Nope, because it would have been caught early...no need for IV abx.

I would have incorporated a much less aggressive workout regime added with biofilm reducing agents.

Lymebug,

GREAT question. I am wrestling with this myself. I was doing ok but have new symptoms (grief, travel, worry pushed them out this week). My son is now diagnosed and we both go to LLMD Wednesday. When I went on abx. I could barely get out of bed. I'm super sensitive and Doxcy made me so sick. My son was at summer camp the entire time. I'm worried if I got back on new, strong abx. I won't be able to care for him. I'm also slow to tolerate herbs so I don't know. I guess I would wish for a stronger body to chug down herbs and would go that route. I know some people on here healed with herbs only.

Krimpet, What is BB-1 and EN-MC and LDI? Thanks.

I would not have stopped rifampin treatment ever from day one of treatment.

I would not have missed even a single dose of antibiotics and all my dosing would have been bang on to the minute every 12 hours.

I would have initiated the bulletproof diet, whal's protocol, or even mito food plan right from day one.

I would have taken more probiotics.

I probably would have added another antibiotic every 2 months.

I think I would have done minocycline + septra DS + rifampin and I would have added them in on that order. After 6 months of mino I would have switched that to a macrolide while keeping the rifampin and septra DS. The whole time on antibiotics I would have taken the nystatin. After the resolution of my last symptom I would add l-arginine and lumbrokinase into treatment and stay on the combo of triple antibiotics, nystatin, and the 3 antibiotics until 2 months symptom free. Then i would stay on the nystatin and do 1 full month of diflucan while also taking lots of probiotics.

There we go, knowing exactly what I now know about my own personal combination of infection this is how I would treat it. I think this will work differently for different people though based on what they have.

Also there are other things I would do like cut out fish. (Fish is too polluted these days including wild caught - it drains on us with chronic illness)... I would exercise more and do more sauna therapy, maybe do more enemas too.

Peteza,

Can you talk more about Beyond Balance? I have read the term here but I don't know what it is or how to get it. Thanks. I am really thinking about NOT going back on abx. Dumb move?

Lymepickle, that is some regimen. It think that would kill me. Were you treating chronic lyme? Are you better now? You sound strong if you can put so much in your body at once. Hope you are better.

Thanks Girlie, diluted dead bugs don't sound that appetizing for some reason - LOL! Thank you.

July morning,

My family lives in Missouri (Mom, eldest brother and his family) and when I told my niece I had lyme she said several people I work with have it and it's terrible. I said "I didn't know lyme was anywhere except east coast" I have learned a lot since July (that's when I was bit). There is a very good health food store near Bentonville airport.

Peteza,

Thank you so much! So Beyond Balance is the brand and MC-BBI, MC BB2 and Tox Ease GL is what you took? What is the difference between BB1 and 2? I see they also have tinctures of cos. I'm going to order NOW. Thank you. You are wonderful. I don't want to take more abx.

Peteza,

Thank you. I just ordered the BB1, Toxease GL and the Babs 1 since I now have babs and pretty sure my son has it as well. I will go back on and order the BB2 to have on hand. It's frustrating to not be able to see an ingredient list - nothing opens up. Did it list ingredients on bottle? I trust your healing so approach, otherwise I would never order if I couldn't see ingredients. Here's hoping!

Lymiemomster,

Ok now I'm crying again. This time a good cry over your kindness. This board really, truly, is the best. At a time when one is so vulnerable and hurting to just have a support system is so appreciated.

How is your son doing? May I ask how old he is, how long he has been sick and how much better he is now? Is/was he able to attend school?

I'm so glad you mentioned the ocd/panic attacks. My son is prone to them anyway. Is your son doing ONLY herbs? This is good to know in case he can't do abx. but he will try.

Thanks for the link. I will research. I know the products are very expensive but they sound promising. Thanks and have a good night LM! Hugs of gratitude to you - and your son.

Hi Huddie!

Ok lets have a good cry together :)

This forum has really saved my life and probably my son's. I jyst felt so alone before this and here in Canada its like we are all underground since the allopathic medical system doesn't recognize lyme at all.

We are only a couple months ahead of you guys. My son got sick last october, missed a whole year of school with migraines 24/7, unbearable joint pain (bedridden)and anxiety/ocd amongst many other symptoms.

He started abx Aug 3 doxy 300 mg/day, azithromycin 500 mg 2/week , beyond balance bab2 , eleuthero along with some vitamins and probiotics. Oct 3 he tried rifampin but had massive panic attack. Stopped for a few days retried and had another attack that night.

He gas been on only azithro 250 mg /day and thr bab 2 ever since, recovering from that. His anxiety/ocd is elevated rn i wonder if its caused by azithro side effect or if its stirring up bartonella. Who knows lol.

Anyhoo, going to ask llnd about Beyond balance bar 2 next wed at appt. otherwise I am going to go full buhner.

The problem is that my son has had such a crappy isolated year. Basically in bed. A year behind now. He is feeling slightly better so i just want him to have some fun. He has been through hell and he needs to be out there socializing and being a teenager. Also he is home schooling doing 2 courses and we need to keep making progress . So I want to try to balance the crappy herxing days with some good days to keep his outlook positive.

I actually dont know what Im doing lol. I just keep lurking here on the forum because this is the only place where people understand how I feel.