Really struggling with Lyme and treatment - been a year of treatment in March :( advice needed

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Chloe S
New Member


Date Joined Feb 2018
Total Posts : 12
   Posted 2/26/2018 7:11 AM (GMT -6)   
Hi everyone, I've read posts on here quite a bit over the last year but never posted myself.
I'm posting in the help that someone has been through the same thing and or can give me some advice.

Basically, my symptoms started around 3 years ago with dizzy spells where the only thing that helped was sleep, before this I developed tinnitus and what I thought were migraines from the lights at work (kept feeling sick and dizzy with a headache and had to keep going home from work) anyway, my symptoms got worse and I started to feel like I was jetlagged all the time, after many trips to my GP, I got nowhere. they kept saying 'but you have so many symptoms, it’s hard for us to work out what's wrong' they sent me for blood tests and of course nothing came up apart from slightly low iron. After reading a book on self-hypnosis to calm myself down, I felt strangely too calm, I panicked and then I started to get a constant shaking in my chest which drove me slightly mad as I could never fully relax. A friend suggested seeing a homeopath for my anxiety/low mood, I had trouble taking the remedies and she did a live blood test and found out I had adrenal fatigue, she suggested looking for a nutritionist to help with this, I found a local one and she tried to help me but as I had trouble taking everything she suggested, even protein powder, she in the end told me she could not treat me if I couldn't get on the things she suggested. she did start me on a no gluten, no dairy, no sugar and no alcohol diet which I stuck to which did help me to feel slightly better. My homeopath then told me about a nutritionist that she uses and recommended her as she also had adrenal fatigue. So I started to see the new nutritionist, she was sure I had Lyme disease, she had it herself, so did her daughter and she had treated lots of people with it, as I couldn't afford the tests, she said she would treat me blind and said that even if it wasn't Lyme it would be something similar and the treatment would get rid of it whatever it was. So along with the gluten, dairy, sugar and alcohol, she had me cut out soy, peanuts, corn, rice and started me on the supplements zinc pollinate, slippery elm, colostrum, epa fish oils, magnesium/calcium, vitamin c, acidophilus, enzymes and a thorn multivitamin.
every single supplement I tried to get on made me feel terrible, (foggy vision, headache, dizziness) even at a tiny dose...so far in a year, I have managed to get on the slippery elm, colostrum, acidophilus, epa, vitamin c. all were a bit of a nightmare to get on and I'm still not on the full doses of all of them, also getting on the colostrum caused me to feel like I had flu all the time, achy body etc. but this finally went, my nutritionist thinks this was die off/herxing. I also sometimes have trouble breathing that lasts a few days (I have asthma so this is very scary), blocked ears, tinnitus, a strange feeling in my left calf, a funny feeling in my chest if I walk fast or run, aching joints particularly hips, bloated and painful stomach, clicking knees, foggy vision, a strange feeling in my right eye, incontinence (taking Himalayan salt for this), constipation (taking flax seeds for this) and many other symptoms.
I did get a test in the end with Armin labs (I just had to know what I had!) and came back positive for Mycoplasma pneumonia and Coxsackie-Virus types A7 & B1. Also my CD57 result is low at 50 u/l and this indicates chronic immune suppression which can be caused by a bacterial infection such as Borrelia burgdorferi, Mycoplasma pneumoniae, or Chlamydia pneumoniae. The results also indicate past infection with Chlamydia pneumoniae. but nothing came up positive for Lyme, even though my nutritionist still thinks I have this.
I had a really bad stomach a few times and had to go to A&E twice, both times was prescribed amoxicillin, which strangely got rid of the shaking, it was a bit of a miracle as I thought I would be stuck with this forever! 4 months ago I got to the stage where I wasn't getting anywhere and so I begged my nutritionist to get me on the colloidal silver (currently on 1.5 teaspoons, I need to get to 7!)/biocidin (currently on 2 pumps, I need to get to 3). At first both these were fine and I managed to slowly up the doses of each weekly/every few days by an eighth of a teaspoon, sometimes feeling achy but this went after a few days. I've nearly got to 2 teaspoons of silver a few times now but every time I do, I start to herx and feel terrible. last week I started to get chest pain and went to A&E, they tested everything and it all came back fine...plus another day I had to stay home from work as I felt so bad. I am meant to be taking something called G.I. detox (clay and charcoal) to help with herxing but every time I take this even at tiny doses I get head fog, a stomach ache and a general out of it feeling (which I feel is too much with the achy body, tiredness and the shaking as well) so I end up stopping.
So at present I’m on, 1.5 teaspoons colloidal silver, 2 pumps of biocidin, one slippery elm AM/PM, one acidophilus PM, one epa fish oil AM, one vitamin C AM, one tsp. colostrum AM.
I feel totally helpless and stuck, my husband is really struggling too and finds it hard to support me as I’m so up and down, even though he is trying his best. I'm struggling at work and went for a second opinion through my work Bupa with an infectious disease specialist, (which they suggested as they would like me to be diagnosed by a doctor, annoyingly I could be given time off work if I can get a UK diagnosis but it’s not looking like this is going to happen) who was very patronising and very judgemental. The second I walked through the door he had tarnished me with the 'other camp brush' i.e. people who see nutritionists, wanted to send me for all his tests which included HIV! which he said he was sure I didn't have, said 'that's what infectious disease specialists do' and when I asked him if I did have what it said on the test results, what would my symptoms be he didn't want to answer but said 'seizures' He's also written to my GP to tell them that he's sending me for tests even though I didn't agree to any and has chosen to dismiss my test results from Armin as they were not done in the UK. So this now means that my doctor will not send me for any tests (my nutritionist has asked me to get liver function tests but the doctor says no)
Does anyone know why I might be having so much trouble getting on supplements, if I will get used to the G.I. detox and how long it takes to feel better on the silver? I really do feel like giving up, this is like a nightmare sad I feel so alone. help please!

Szabo246
Regular Member


Date Joined Sep 2017
Total Posts : 484
   Posted 2/26/2018 7:24 AM (GMT -6)   
Hi Chloe, I’m really sorry to hear what you have been going through, an llmd will accept those test results, if you email me I can give you details of some I’m the UK, I got nowhere with my GP, complete waste of time.

Chloe S
New Member


Date Joined Feb 2018
Total Posts : 12
   Posted 2/26/2018 8:43 AM (GMT -6)   
Thank you so much! I've now messaged you.
you have literally made my day! so nice to know I am not alone and not going mad! also nice to know there are LLMD doctors in the UK! I couldn't find any. I really hope that one day I will get back to what I remember as normal!

x

acarined
Regular Member


Date Joined Jul 2015
Total Posts : 175
   Posted 2/26/2018 10:05 AM (GMT -6)   
There are lots of herbs for Lyme that you can take yourself if you can't get access to a LLMD, http://buhnerhealinglyme.com/ lists several of them.

Chloe S
New Member


Date Joined Feb 2018
Total Posts : 12
   Posted 2/26/2018 10:15 AM (GMT -6)   
Thank you so much, i'll take a look!

Notime4lyme
Regular Member


Date Joined Dec 2017
Total Posts : 273
   Posted 2/26/2018 1:45 PM (GMT -6)   
Your symptoms sound very similar to mine before I started treating. I sure you will be able to find something that works. Sometimes I found that the supplements my naturopath recommended for me bothered me more than the herbs that I found out about and started taking on my own.

I hope you feel better!

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32656
   Posted 2/26/2018 2:13 PM (GMT -6)   
Hi Chloe - welcome to our community. (I don't think I greeted you yet - but if I did - then you get two)


I'm sorry you've got Lyme but glad you found your way here.
I see that you've been helped by some UK members already - I hope you stick around and please ask any questions you have.

I see Szabo has reached out to you with some LL Dr options.

Good luck!
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Chloe S
New Member


Date Joined Feb 2018
Total Posts : 12
   Posted 2/27/2018 1:25 AM (GMT -6)   
That’s great to know, it’s so easy to feel very hopeless and alone in all this, especially as my nutritionist calls me a ‘specia! case’
Can you remember what you tried and what did and didn’t help?
I need all the help and advice I can get right now.
You guys really have helped me to feel less down and hopeless.

Also i’m not sure if it’s the silver but does anyone else wake up with a constant achy feeling in their body and shakiness in their chest? Kind of like mild flu all the time.

Also H Girle! Thank you for the lovely welcome!

And I read that there are no LLMD’s in the uk I’m tired of Lyme, if I had a letter from a doctor then my work life would be a lot easier as I have only so far had something show up on the arm in labs test, Lyme didn’t show up but a few others did, my nutritionist still thinks I have lyme but it’s really hard to detect sometimes.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32656
   Posted 2/27/2018 2:54 AM (GMT -6)   
Chloe - there are some LL Dr.'s in the UK - hasn't anyone sent you the information?

I've got a few options - including a herbalist. Send me an email if you want the info.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Szabo246
Regular Member


Date Joined Sep 2017
Total Posts : 484
   Posted 2/27/2018 3:44 AM (GMT -6)   
I’ve sent the info across but I think chloe is looking for an llmd on the NHS which I believe there are not, they are all private.

Chloe S
New Member


Date Joined Feb 2018
Total Posts : 12
   Posted 2/27/2018 3:56 AM (GMT -6)   
Thank you everyone, sorry I didn't mean on the NHS, I saw a 'infectious disease specialist' through my work Bupa insurance and he was the most patronising, judgemental, pompous man I have ever met.
the minute I walked through the door he had labelled me as 'from the other camp' i.e. someone who has been to a nutritionist/herbalist rather than being diagnosed through a doctor. I had the Lyme test through my GP and it came back negative so that's what they go on. Honestly I was so shocked at how I was treated, he told me that he wanted to send me for 'his tests' which would cost £1000 retesting for the things that came up on the armin labs tests as the tests weren't uk tests he chose to dismiss them. I didn't agree to his tests but he wrote to my GP quoted my nutritionist with the wrong name, said that he was going to dismiss the tests I had already had and 'was' sending me for his tests. I hadn't agreed to anything and now my GP won't do my liver function tests as they say that the infectious disease doctor is sending me for all the tests I need. I only went to him so I could get a second opinion/get something in writing to say I have lyme for my work/piece of mind and now he's made life even more difficult for me. I was so angry, he is so small minded, why is Lyme and its co infections not recognised by doctors, so many people have it, I wish we could do something about this.

again thank you all for your support, kindness and advice.
x

Szabo246
Regular Member


Date Joined Sep 2017
Total Posts : 484
   Posted 2/27/2018 4:33 AM (GMT -6)   
An llmd will treat you according to your symptoms as opposed to test results, if you can’t get to an llmd I would suggest start self treating with herbs Hun. X

Chloe S
New Member


Date Joined Feb 2018
Total Posts : 12
   Posted 2/27/2018 5:27 AM (GMT -6)   
thank you hon,
its a tough one as if I can get the problem with tolerating things sorted then I would be able to progress a lot more easily with everything, that's what's holding me back at the moment.
it means I can't detox properly with the charcoal and clay, can't get on all the suppliments I need to get on. I've even had trouble tolerating homeopathic remedies and flower essences, so there's something going on but I don't know what. does anyone have any suggestions on this or had anything similar? I think that's one of the big problems, once that's sorted I will be able to move on I think, either with my nutritionist, with herbs or with a llmd.
x
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