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    Old 04-18-2011, 08:06 AM   #1
    raj1970
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    Could this be Lyme?

    Hi All,

    I'm wondering if someone can provide me with some insight. I'm from the UK and have been experiencing some strange symptoms.

    It started in October 2010 after travelling back to the UK from Canada (place called Guelph). After a bout of flu, in the centre of my back, I developed an area of pain. From that point of pain, a thin strip of skin became hypersensitive to touch such that even if the shirt on my back brushed against it, it was extremely painful. My doctor suspected shingles but I didn't have a rash. The Amitryptiline I was prescribed didn't really help with the pain but in time (by the end of November 2010), the pain eased off until I was experiencing just mild sensations in my back (I don't know how to describe them!) but even those eventually went away.

    I travelled to India in December where I came down with a very heavy cold and upon returning to the UK, I then went down with flu in mid-December. I was extremely fatigued, developed a nasty cough, had really bad chills and suffered terrible points of pains over my body but mainly in my legs - like I was being stabbed with pins and needles. The flu took much longer to clear up than normal for me. I continued to suffer unusual chills and a flu type feeling well into mid-January 2011.

    Around mid-January, I started to redevelop the issues with my back, mainly mild tingling in certain areas, usually first thing in the morning. These were annoying but I found that with exercise (e.g., walking to work, going to the gym), the sensations would subside and stop completely. They would also stop if I was leaning back in a chair for example.

    I suffered these back sensations on and off throughout January and into February but things have now become more scary.

    Around mid-Feb, I developed more symptoms:

    Tingling in certain areas of my hands and feet, predominantly my right side but also to some degree on my left side.
    Tingling in my forehead, and down the sides of my face and around my eyes. This was bad and continues to be so.
    The feeling that from half way down my right calf muscle to my foot was falling asleep or waking up from being asleep
    Muscle twitching in both my calves, like they are bubbling and popping!
    Cold patches in my thighs

    At this point in the time line, the paresthesia was worse when I was at rest but usually subsided (or I didn't feel it) when I moved about, e.g. walking. The face tingling was really bad and constant but again, I wouldn't feel this for example, if the wind blew in my face or I touched my face in the areas that the tingling is felt.

    I made an appointment with a neurologist who carried out an MRI (head and c-spine without contrast) and this came back normal as did all my blood work (this was 23rd February 2011). He stated that it was very unlikely to be MS but wanted to do nerve conduction tests next as clearly something was going on.

    It's now mid-April 2011 and the paresthesia has been steadily getting worse. More of my right hand is affected by tingling and the same can be said of my right foot. The types of paresthesia that I am experiencing is also increasing. In addition to all the above, I now have:

    As well as tingling, my forehead and the side areas of my face feel as though I have walked into cobwebs and/or there are fine threads running across them.

    I also get this cobweb sensation on my right arm
    A crawling sensation around the forehead and sides of my face.
    I sometimes get a 'burst' feeling in the forehead area and down the sides of my face - like a little firework going off on the skin
    I'm experiencing a lot of itching
    I feel as though a drop of water is running down my legs (usually only in the morning though).
    My right arm feels as though it is going to fall asleep during the day and in fact I have woken with both arms asleep but not severly so. After some movement, they have gradually returned back to some sort of normality
    My right arm (mainly forearm) gets fatigued very easily
    The muscle twitching in my calves is getting worse and spreading to other aeas of my body

    I experience this everyday and it's always the same areas of the body with new ones slowly being affected as I have tried to describe. It does not affect me at night at the moment.

    To summarise, I'm at my wits end as things seem to be getting progressively worse and I don't know where I'll end up! I also appreciate that my symptoms are strange in that they don't bother me at night and, do subside if I move around or experience a genuine sensation in the area of my body that is experiencing the paresthesia, although this is starting to happen less now.

    I'm not sure what I have - could it be MS? Could it be Lyme? - it all started when I came back from Canada and there is some disease out there. I suffered a lot of colds and flu's back to back - could I have severe inflammation of my nerves due to repeated viral infections?

    I've read a lot on the forums here and other sites and have scared myself so is it anxiety now that is fuelling and amplifying the original symptoms?

    I'm sorry for the long post but I would really value an opinion as to what might be going on with me.

    Thanks
    Raj

    PS, I have posted this message on the MS forum too.

     
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    Old 04-20-2011, 03:52 PM   #2
    imaxfli
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    Re: Could this be Lyme?

    It could be either....but not classic symptoms....what is your diet like? I would eliminate sugar and see if this helps.

     
    Old 04-21-2011, 01:22 AM   #3
    raj1970
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    Re: Could this be Lyme?

    Hi again Littlehutton,

    I know you have said that my symptoms don't scream Lyme in this thread but you did say that they could be from Lyme in my thread on the MS forum, mentioning further that my symptoms were similar to yours.

    Thanks again for replying and for your thoughts.

    Cheers

    Raj

    Last edited by moderator2; 04-21-2011 at 05:08 AM.

     
    Old 04-26-2011, 04:49 PM   #4
    22dreams
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    Re: Could this be Lyme?

    Hi..your symptoms aren't classic for an arthritic strain of lyme but if lyme were actually classic in any way(which it's not--it's called the Great Imitator), your neurological symptoms sound like classic Neurological Lyme. A diagnosis of "shingles without the rash" is a red flag to me. I've known others who've received that very diagnosis. A history of bout with extreme fatigue & nasty flu is another one.

    tingling, twitching, numbness, "falling asleep" feeling, COBWEB sensation, crawling sensations, water running down your legs. cold patches too. I've had them all. so has my sister. All potential signs of neurological lyme or since bartonella greatly affects the CNS, bartonella or a combo of both.

    I'd also suggest being assessed for thyroid dysfunction--in particular, Hashimoto's. You can have "normal TSH" Hashimoto's so you would need to be tested for thyroid antibodies regardless of a having a TSH within normal range. Thyroid disease and lyme often go hand-in-hand (that's another story for another day).

    Since you are in the UK, try contacting charity organisations there for Md referrals (BADA-UK or Lyme Disease Action are 2 I know about). You've got to see a practitioner worth his/her salt. Most NHS GPs or neurologists aren't going to know what to do with a case of neuroborreliosis & most-likely not even recognize it.

    best of luck to you.

     
    Old 04-27-2011, 11:48 AM   #5
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    Re: Could this be Lyme?

    Hi Raj

    I agree, I was also given the "shingles without a rash" diagnosis, and my neuro symptoms which followed shortly afterwards were almost identical to what you have described.

    Please don't delay, and get to see an LLMD asap, the onset of your symptoms after your trip sound very suspicious to me, if lyme is your culprit it will get worse, the earlier it is treated the better chance of a complete recovery.

     
    Old 04-28-2011, 03:26 AM   #6
    raj1970
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    Re: Could this be Lyme?

    Hi Littlehutton,

    I've made an appointment with a LLMD but it's not until June 13th!

    My symptoms are pretty awful at the moment - my right forearm has become weak and my legs feel like concrete!

    What a nightmare!

    Anyhow, thanks for your advice.

    Raj

     
    Old 04-28-2011, 03:36 AM   #7
    raj1970
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    Re: Could this be Lyme?

    Hi 22dreams,

    thanks for posting to my thread.

    I have made an appointment at a medical centre here in the UK that is very literate about Lyme. The appointment is not until the 13th of June however and I hope I can hang on as my symptoms are worse now. Limbs are easily fatigued and my mental state seems to be deteriorating! Just feel 'not with the program' - not sure if you can relate to that?

    Anyhow,again, thanks for your advice

    Raj

     
    Old 04-28-2011, 04:27 PM   #8
    22dreams
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    Re: Could this be Lyme?

    Raj,

    I'm not only not with the programme, I'm at times tuned into the wrong channel

    I suspect I know which centre you are going to as I believe there is really only one to my knowledge in the UK. The wait for appointments is so long for a competent physician. Been trying to suss out options for someone in London for whom lyme may be a contender with his recent health changes. Sadly affordable care (via the NHS or anyplace else) is not within easy reach on either side of the Atlantic.

    anyway, I think I mentioned (pardon if I am being repetitive), Hashimoto's can often accompany lyme but causes neurological symptoms and fatigue as well. I have both. When I don't treat my thyroid (with armour thyroid), the extreme fatigue (like a concrete anchor) creeps back in. That centre, presumably integrative, SHOULD in theory be well-versed in this combination of co-occurring issues but just in case, I wanted it to be on the fore of your radar.

    Best of luck with everything.

     
    Old 04-29-2011, 12:56 AM   #9
    raj1970
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    Re: Could this be Lyme?

    Hi 22dreams,

    Thanks for the information and thanks for taking the time to respond to my troubles.

    How are you and are you on the mend?

    Raj

     
    Old 05-01-2011, 12:44 PM   #10
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    Re: Could this be Lyme?

    Quote:
    Originally Posted by raj1970 View Post
    Hi Littlehutton,

    I've made an appointment with a LLMD but it's not until June 13th!

    My symptoms are pretty awful at the moment - my right forearm has become weak and my legs feel like concrete!

    What a nightmare!

    Anyhow, thanks for your advice.

    Raj
    Hi Raj

    Great news to hear you have made that appointment, I am assuming it is the same clinic that I go to, are you seeing Dr M or Y?

    I know it seems like a long wait, but the time will soon pass, and as previously mentioned by Jen there are many things you can do to help yourself in the meantime.

    Before I was diagnosed I started to take a supplement called allicinmax, which is derived from garlic and acts as a natural antibiotic. As soon as I took 1 capsule I had a herx reaction, so I knew it had to be lyme. Fresh raw garlic would also have the same effect, if you can stand the taste.

    Last edited by littlehutton; 05-01-2011 at 12:46 PM.

     
    Old 05-01-2011, 12:54 PM   #11
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    Re: Could this be Lyme?

    Quote:
    Originally Posted by jenj770 View Post
    raj,

    Until your appointment, you could try taking some of the potions that many lymies use regularly as adjuncts to their treatment protocol. If you don't know how to proceed you could do research on them. The suggestions:

    coffee enemas

    oil of oregano

    up your magnesium supplements and also do Epsom Salt or magnesium oil soaks

    colloidal silver

    up your vitamin C

    probiotics

    No alcohol!

    Hope you get some relief soon.

    Jen

    Hi Jen

    Was just wondering what the oil of oregano is used for? This has been recommended to me, but Im not sure how it would be beneficial?

    I am taking so many supplements already, it's hard to know which one's are best and priority. I have recently cut down from over 20 pills a day to 9, as I felt so overloaded, and couldn't tell what was causing what!

    Many thanks

    LH

     
    Old 05-02-2011, 02:02 AM   #12
    raj1970
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    Re: Could this be Lyme?

    Hi LH,

    I'm seeing Dr Y

    I'm taking some supplements but just conventional stuff to help with the nerves, immune system and muscles so, a strong vitamin B complex, thiamine hydrochloride, vitamin D, vitamin B12 and Magnesium.

    I will try the garlic especially as I do like the stuff and often use it raw!!

    The old MS thing is still prevalent in my head though - anxiety suck eh!!!!

    Take care

    Raj

     
    Old 05-02-2011, 12:23 PM   #13
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    Re: Could this be Lyme?

    Hi Raj

    Yes I believe Dr Y is very good, so you will be in good hands!

    Best of luck at your appointment, perhaps you could let us know how you get on.


    Hi Jen

    Thanks so much for the info, I think I will definitely give it a try,

    Take Care

    LH

     
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