Desperate for help/advice :-(

Hi everyone. I really wanted to introduce myself with my full story, but something's happened and I desperately need help/advice now. I'm so sorry to start off like this, but I genuinely feel like I know you all as I have been visiting this site daily for around a year now, so I'm really hoping you won't mind me reaching out to you :-/.

I am in the UK, where LLMDs are practically non existent. I am seeing the only one I know of, clinic near London. They diagnosed me around 14 months ago with positive test from igenex and also one from German lab. Many neurological symptoms - paralysed leg at one point, dizziness, tingling, numbness, depression, headaches, brain fog . . . no joint pain to speak of, all neuro.

I had 4 weeks of IV abx (ceftiaxone) followed by 3 months of cefuroxime, then 3 months of doxy, then 3 months of clarithromycin, then 3 months of amoxicillin plus clarithromycin 4 days a week and tinidazole 3 days a week. Also a huge array of supplements, mitochondrial support, probiotics, bromelain, nattakinose, artesunate.

My leg has improved a lot - feels easier, tho still not right - still feels heavy and not quite my own. Dizziness is worst symptom. Slightly improved I think - I think the tinidazole may have been hitting something, as I often get headaches while taking it, & feel very down, and I think the dizziness has improved this last 3 months.

However, after 12 months on oral abx, my Dr wants to switch me to herbals. It seems to be Buhners protocol. However, it is really expensive and it has completely floored me. I always get stressed out when my meds are being changed, but it's normally just been a change of abx, plus a few tweaks here & there with supplements. But this seems to be a HUGE shift, and I am so freaked out by the huge list of things I have to take, not to mention the cost! This illness has already eaten up all our savings, I just don't know where it will all end :-(.

Can anyone reassure/advise me regarding Buhner's protocol? Does it work? Especially for neuro issues? I am soooo desperate to be well, but soooo sick of it all :-(.

I'm sorry again for leaping right in with a request for help, but I'm desperate and honestly don't know who else to turn to . . . I really feel like giving up :-(. This forum has been a huge source of support for me so far - thank you all so much xx.

Are you sure it's Buhner's protocol? I find Buhner's to be one of the more reasonably priced herbal protocols.

The lyme core treatment would consist of Japanese Knotweed, Cat's Claw, and Eleutheros.

I did Buhner before I was diagnosed...and stayed on it for 6 weeks - I believe in that time it held my symptoms...as I didn't get worse...but I ramped up slowly and was probably on the full dose only for a couple of weeks.
I started antibiotics...and had a massive herx - 12 days long...and discontinued the herbs...felt like maybe there was too much killing in my body.

I am now in the midst of adding Buhner back in to my protocol. I am taking Japanese Knotweed, and have just added the cat's claw.

It really isn't expensive.
Go to the Buhner website and check it out. I bought my supplements from Green Dragon Botanicals - so you can go to that website as well, and see how much the Japanese Knotweed and Cat's Claw is.

Girlie, traveler, thank you so much. I almost have tears in my eyes as I DO feel very alone and desperately need some support, and your replies mean so much to me. I am lucky that I have the most wonderful husband who says he is happy for us to spend whatever it takes to get me well, and he helps me me through my tearfulness and pessimism and really keeps me going when I'm all but ready to give up! But I really need support and advice from fellow lymies and this forum is just fantastic - thank you so much

I'm going to go thru the estimate they sent & see exactly what's being prescribed, but the three month treatment is nearly £2,000 :-(. This does, however, include quite a lot of other supplements for general support. I think the Buhner part comes to £800-odd . . . I will go & check and let u know.

Thanks again . . .

That would be around $800.00 is US dollars - that's way too expensive!! I can't imagine that it costs that much to get products shipped to the UK!

I would suggest that you look around yourself. I know that Amazon.uk is available over there and I found Japanese Knotweed on there:
goo.gl/wsRivZ

Cat's Claw: goo.gl/aoQdbw

Eleuthero: goo.gl/rL8TO4

And Ashwagandha, if you choose to use it: goo.gl/TwHnJM

All for a lot less than what you quoted! Although I'm not sure why you were told to take the Andrographis or the Corilous (I didn't even see this one on Buhner's site).

I'm also not aware of the actions of each of the supplements that you were told to take, although I do know some of them.

Many of us spend quite a bit on supplements though - our bodies are quite depleted of many of the things we need most. Buy what you can each month, building up how much you take. You don't want to start all of this all at one time anyway. Should you herx, you need to know what caused it, so we always suggest that a person not start more than one thing every 3 or so days, so you have some time to gather all of these things.

Dr. Horowitz - a very well known and very good LLMD here in the States - tells us that ALA (Alpha Lipoic Acid) is a precursor to Glutathione, so that's what I take, although the liposomal glutathione might be better, it's also more expensive. Glutathione is important to get as soon as you can because it can help keep herxes from not being quite so bad.

Probiotics are necessary to have as soon as possible because you are still taking antibiotics (abx), even though they are herbal, and will deplete the good bacteria in your intestines.

Let us know how we can best help you - that's what we do here. And you are right! You are not alone in this!!! Not only do you have a wonderfully supportive husband, but you have us now as well!!

Hi Flossie,

That's too expensive for Buhner. Buhner is the cheapest protocol around. The nice thing about Buhner is that the herbs are available from a number of different website.

I made a tea from some of the Buhner herbs (some of the older ones) that was REALLY inexpensive. As far as the Buhner herbs, at least, I didn't even come close to $800 dollars or pounds. I can't remember if England is part of the E.U. or not. We have another member in England, but I've forgotten her name. I will have to look it up. She knows a lot about treatment choices in Europe.

There's a well known LLMD in Belgium, and there are supposedly some good ones in Germany. For all the money you're spending, you could fly to Germany.

I never buy herbs from the doctor's office, though I don't know if that's what you're doing. Where did you get your prices?

I take tons of supplements, and still don't spend $800 a month.

Margaret

Thanks so much for your responses and for all your great advice.

Happyjo: thanks so much for replying . . . yes, the situation here with regards to lyme is absolutely shocking. Our health service knows nothing about it, & seem to have barely even heard of it. My GPs (have changed a few times but they are all reading from the same book on this) and NHS consultants do not buy into the whole lyme diagnosis, and won't recognise my positive blood tests from igenex as they are from overseas. So, unfortunately, I have had to pay for ALL my own treatment - nothing has been offered by the NHS and none of my costs covered. After a year of paying for treatment, this latest bill was quite a big one, at a time when I had hoped the costs might tail off a bit :-/. But I guess I have few options . . . It's such a worry for people who are already so sick :-(.

Deejavu: thanks so much for telling me I can and will get better! That is just the encouragement I need! You do wonder if things will ever improve . . . It's hard to believe they will sometimes. But I will try to remain positive, and I am so happy to hear that you have come through this and are now feeling well :). As for detoxing, I am drinking plenty of lemon water . . . Tried an epsom bath once but it nearly killed me - I think I may have had the water too hot :-/. So I've been scared to try again. May try a foot bath as a more gentle option?

Teregram, traveler, achievinggrace: thank you so much for responding, and for your advice on supplements etc. I am buying them from the drs office . . . maybe I will try & get them elsewhere in the future - thanks for the links. Not quite brave enough just at the moment . . . I think I will have to just go with what has been prescribed this time, but I will def review this, as I cannot afford £2,000 (which is actually around $3,200!) for three months of meds indefinitely. :-( Oh and yes, I'm taking vitamin B complex with my tinidazole - thanks for checking tho. I've also been taking tons of good quality probiotics for the whole 12 months of treatment, and will def continue to do so.

Thank you again, for your support - I'm so, so grateful xx

Just heard about a great herbalist on FB that Buhner recommends. If you're interested, plz let me know.

Margaret

Thanks so much for your advice teragram. I definitely think I am paying a premium for this stuff by buying it from the doc, and the comments here have pretty much confirmed that. Unfortunately, though, I really need to get these new meds right away as I run out of abx next week and don't have the time to source this whole new treatment plan elsewhere so I think I am just going to have to grit my teeth and go with their suggestions and purchase direct from them this time. But that gives me three months to research a different supplier, so I will definitely be looking into that for next time! It's good to know that there IS a cheaper way of doing this, so thanks for the link and the info, I'm really grateful.

And thanks traveler for such a warm welcome! Having been a 'lurker' here for 12 months, whilst not having the nerve to actually introduce myself or post anything, I do feel that I know many of you already, and have found the forum to be an amazing resource for information, advice, support and friendship. I'm sure that now I've taken the plunge and dived in, I will post often! I already feel so much better about my treatment protocol after running it past you and getting your thoughts . . . sharing our worries and concerns really does help . . . thank you so much for the support xx