I can’t do this

Some of you have advised me in the past due to Lyme not being recognised in the U.K.
I’m positive for all 3 B’s along with other things, I used Armin Labs in Germany. My doctors won’t accept it, and now because the infectious disease specialist told my parents there’s no such thing as Babesia or Bartonella in this country and that I likely have an autoimmune disorder, I think they are beginning to have their doubts too. I have a definite brain infection now and it’s hell. I’ve been doing herbs but the infection spread like wildfire anyway, and recently managed to get hold of some Doxycycline, which helped a little along with herbs but I had a huge flare around my period and can’t get out of it. I have crawling all over my face and skull, twitches, severe head and eye pain etc etc, I can’t sleep properly anymore because it freaks me out so much, I can’t stand up for long because I’m so dizzy with my heartbeat and feel like somebody is stepping on my head, I can’t think. I’m by myself yet I can’t look after myself. My herxes/mcas/side-effects, whatever they are, have been so psychological since it spread to brain I’ve been afraid to try sida and co again, but I did this morning out of desperation, a tiny amount, and have been planning suicide the entire day. Also, now whenever I take anything I seem to feel as high as a kite, spacey and disoriented, numb. I wondered if it was mcas and tried quercitin and co and then eventually an antihistamine but it all makes me feel much worse. This happens even at low doses of herbs with tons and tons of detox, and I’ve only been taking 200ml of Doxy per day. I’m totally at a loss. If I can’t handle herbs or antibiotics, or travel, or do anything for myself, how the hell is there a way out of this!? I literally feel like I have nobody to turn to, GP is out of the question, the hospital has turned me away many times saying there is nothing they can do for chronic Lyme. I’m scared to not treat because I know the consequences, yet I’m scared to treat because I know the consequences. I’ve only had a herb dose today because it made me feel so high I immediately started pacing because I can’t sit still and planning ways to die. It’s crazy, I was somewhat good before my period started aside from some random pains in collarbone, ribs and hips, and the sweats stopped. When I was on herbs alone I had such bad brain fog and memory issues I was relieved when the Doxy started to clear it, but I really can’t handle this high feeling. Burbur and Pinella doesn’t seem to help :-( Please, what the hell is going on!?

I’ve seen many different doctors but they don’t believe in Lyme here in the U.K. The infectious disease specialists are just as bad. I’m on a waiting list for a LLMD in Ireland but I have no clue how I’ll get there at this rate and my poor mum is at breaking point. My dad is very sick and now I can’t do anything for myself and am behaving erratically, I can’t stay with them as they only have a one bed and it was too awkward when I there trying to eat healthily and do detox etc. so I came back to my apt. My mum knows I’m very sick but it’s difficult for her to comprehend when specialists are disregarding my Armin results and telling her coinfections don’t exist, and that the herbs are toxic. I did archaeology in various countries with uni and spent the whole of last year in the countryside full of deer. I’m exhausted trying to explain to people, I’ve had every Lyme and co symptom under the sun now. She knows I have Lyme, she’s just at breaking point and is at a loss of what to do because she can’t help. The MCAS and mutation thingys are all new to me, I learnt they existed from the forum and will have no way to find out in the U.K. Honestly, it’s like the Stone Age over here in regards to Lyme. I’ve cut out those foods as you say, and have been doing the detoxing daily. All I’ve done all day now is drink lemon water, zeolite, milk thistle which usually helps but it’s going from bad to worse. It’s probably the infection getting out of hand, I feel like I’m falling backwards and have such intense pressure at the front of my head and face.

I really feel for you genma, I usally feel worst right after the sauna but once I drink water I feel better. I usally have to lay on the bathroom floor after a shower too. I would look up everything you can on MCAS, I am still learning about it too. I have read lots of books from the library and learned so much from these boards, I know it seems like so much now but do one thing at a time. I know how it feels fir doctors to not believe in Lyme but we all believe you on here, do you take anything for stress, you could try natural things first but I do take kholophin as needed which can help calm me down. Do you have any yoga classes in your area or try walking in nature. I am thinking if you can calm your brain down a little you will be able to focus on just doing one thing at a time. Hope that helps, I know it is so hard.

Paul.. I was literally just at the multi story car park across the road. I looked at my phone and saw this, your prayer made me turn back. I’m home now and I’m going to call my mum to come and get me, I’m not thinking straight.

I’m just so scared of the infection in my brain, I don’t know how I’m going to overcome it. I’m scared of not being me anymore, I’m already not.

I don’t know what to say Gemma… that’s hard. I feel that way often. I can’t say anything about how well they work since I haven’t been able to get them to successfully work for me yet, but I know some people benefit from frequency devices as another alternative treatment option. Ones I know about are wave1, Healy, spooky, Ampcoil, along with a large host of other ones.

Just trying to give you hope there might be other treatment options.

Paul, you’re an angel. Thank you so much 🙏

Thank you Calm Buddha and Bailey.

I think you’re right WalkingByFaith, I think it was toxins building up and brain inflammation. When I got to my parents I finally ate something and took some pharmaceutical anti inflammatories and it subsided slightly. I was able to have a good sleep. I resumed treatment with Doxy and herbs and it hasn’t been nearly as bad today. Perhaps I needed a day off to let things subside a bit.

I also just had a bit of a miracle, my appointment with Dr. L in Dublin just came through! 11th of November, not too long to wait at all. The waiting list is usually humongous, I can’t believe it. I’m afraid of proper treatment but at least I’ll have a proper expert guiding me through.

Thank you all for being there for me yesterday, I appreciate it a lot.

I said a prayer earlier today for you Gemma, please don't give up ❤️.

GemmaCJ said...
Paul, you’re an angel. Thank you so much 🙏

Thank you Calm Buddha and Bailey.

I think you’re right WalkingByFaith, I think it was toxins building up and brain inflammation. When I got to my parents I finally ate something and took some pharmaceutical anti inflammatories and it subsided slightly. I was able to have a good sleep. I resumed treatment with Doxy and herbs and it hasn’t been nearly as bad today. Perhaps I needed a day off to let things subside a bit.

I also just had a bit of a miracle, my appointment with Dr. L in Dublin just came through! 11th of November, not too long to wait at all. The waiting list is usually humongous, I can’t believe it. I’m afraid of proper treatment but at least I’ll have a proper expert guiding me through.

Thank you all for being there for me yesterday, I appreciate it a lot.

That’s great - you’re going to see Dr L in November!!!
Will you post on the forum after you have seen him?

hi Gemma - sorry to hear of your troubles - i am in the UK also and have been though all the frustration of dealing with the NHS with this illness - very good news that you have got to see a well thought of LLMD

hang in there - things can get better

i am self treating as all teh doctors i have seen - even some of the best NHS infectious disease experts have been essentially useless - but through my own self education and experimentation i am approx. half way recovered now

my treatment has been extensive
-ketogenic diet ( biggest single improvement)
-extensive buhner herbs for lyme and co-infections
-tried 9month of antibiotics - which helped buy i stopped due to raised liver enzymes
-immune modulating treatments - LDN, Ivermectin
-methylene blue for Bartonella

self treatment is a journey with a great deal of trial and error