Last reply 1 year ago
Am I completely desperate

I was wondering if anyone else does this and how do you decide what is or isn’t. I recently went to a new body talk practitioner (balancing the body) who told me I definitely don’t have ms, it’s Lyme disease which is curable. She sent me information which made absolute sense when I read it. Basically a advocating that Lyme is the pathogen for ms so you get rid of the Lyme which cannot always be detected with blood tests. I was so super excited. I spent a lot of money to purchase a rife machine and medication that is supposed to clear the Lyme. I went to the body talk lady I usually go to who is absolutely ademant that the other lady is wrong and it definitely isn’t Lyme and is ms. The First Lady I went to showed me my own muscle response said it’s Lyme and not ms. I feel like I am so desperate I do things that are totally stupid and illogical. At times I think I am making informed decisions and I am a pioneer of new treatments. At other times I feel like a complete desperate idiot who will grab any carrot dangled in front of me. I have been diagnosed with ms by 2 neurologists. My spinal fluid reflct d the bands and I have lesions so?????????? Frustrated

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1 year ago

@littlesister , when we’re given bad news that we don’t want, we’ll clutch at any type of straw to remedy the situation.

And, that’s the problem with someone who is having a crisis, there’ll always be someone on hand that wants to profit from it.

Older MSers, like me, have seen all manner of miracle drugs and cures, from bee stings to goat serum.

Lyme and MS have similar symptoms, but I hope our Neuros are smarter than that. ๐Ÿ˜‰

1 year ago

There are loads out there preying on us MSers. Not saying that the first lady is, but she could be. I’d go by my neurologists diagnosis. Research at the moment is advancing fast….hang on in there….things will get better. We just have to wait. And you’re not a desperate idiot – you’re just trying to do the best for yourself. In this case best to rely on the experts. As you say….you have lesions.

1 year ago

Welcome to the club check โ€“ we have all been thereโ€ฆ I also considered the possibility that I had Lyme disease that I have not discussed it with my doctor, but I have been meaning to … it’s actually really logical and I don’t blame you for wondering this , I have too and Lyme disease is a real and very similar issue?
I would speak to your doctor about this, I am going to. I lived in Yorkshire for a few years and used to go walking in the moors and got bitten by some strange little critters onceโ€ฆ Lyme did cross my mind – so don’t worry, you are not the only one!

My latest thought is that it could be a vascular issue and so I have been taking daily aspirin to thin my blood out a bit and make sure more of it has been getting to my brain โ€“ placebo?
Not sure, but I do feel better for it.
It is really good that you are doing everything you can, having a bit of control does go a long way to feeling less out of control – but discuss with experts and don’t be hard on yourself

The bad times don’t last any more than the good times, so don’t loose your confidence – you have explored a logical avenue
Hugs and healing sparkles

1 year ago

Well what to say here…
I have been through this because I went to a chiropractor who said it was Lyme disease and not MS. So of course after researching Lyme disease and its symtoms, straightaway I think its Lyme that I have. Chiropractor tells me to get a Rife machine, I do. I straightaway think I’m going to be cured and made stupid choices like stopping Tysabri medication for MS.
I only declined during lyme treatment (IV antibiotics). They only made money out of me, I don’t want to go into any more detail here.
All I’m trying to point out here is that you are not alone here! I am happy to talk to you about this, message me if you want.

1 year ago

Hi dan

Thank you for your response. Was kind of fun thinking the ms was Lyme for a few weeks ๐Ÿ˜Š. Have decided to complete the Lyme treatment as I’m nearly half way through. I am not taking anti biotics. Just rife machine and a lot of homeopathic remedies that are supposed to shake up the Lyme and then get rid of it. I won’t stop my ms injections (avonex) as yet but want to hold on to little bit of hope that holding metal rods for an hour a day is going to change my life. I figure I’ve gone this far so might as well finish it. Getting differing opinions from so many doctors/practitioners/ homeopaths etc….. makes me crazy.

1 year ago

Hi, I had a blood test for Lymes diease before I was diagnosed with MS?I’m a bit confused is the blood test for Lymes not good way of diagnosing Lymes?

1 year ago

Hi @littlesister you’re certainly not being illogical trying to find the cause of your illness. I’m waiting for a blood test to come back for Lyme and many other tests like vit d, iron, blood cell count, vit b12 etc. The symptoms for Lyme, chrohns, ms, candida in fact many autoimmune diseases are similar. Plenty of inflammation, headaches, pain, gas, bloating, foggy head, mould, yeast infections, cognitive issues, mobility issues I could go on… I know it’s hard and we need/want to rely on people who we think can help. I’ve been there and I don’t feel foolish as I just take it as an experience which I learn from whether it’s positive or negative. If you’re neurologist has diagnosed you, then I’d say he’s probably right with the MRI scan/lumbar , but look into other causes of your ms like family history, Lyme, candida, adrenal and thyroid problems, antibiotic use – most of these are linked to your gut. I believe (& im actively doing this now) if you heal your gut – which is a radical lifestyle change – your can help relieve many of your symptoms. My experience is I no longer have brain fog, my energy has increased, my dodgy arm has almost gone, I’m patient, I can think logically and things are clearer.

This approach is not for everyone, but if any of the above resonates with you and you are happy treating the cause of the ms and not just the symptoms, then there is hope.

Please no nasty replies to this message I’m just sharing my own experiences after 12 years of diagnosis and being drug and relapse free. V x

1 year ago

My husband does business with a man whose wife has Lyme’s disease. He says the regular blood test is unreliable, there is another test that costs a lot and you have to see a specialist. I talk to my neuro about it and he told me there was similar symptoms but still different. I have had other autoimmune problems and my family history is full of it. He said with a family history like mine I didn’t need to concern myself with Lyme’s disease. Potter

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