Hi guys,
I am looking from feedback with others diagnosed with lyme disease. At the moment I have been unwell for 6 months and diagnosed with post viral fatigue syndrome. The onset of symptoms for me was in November with penetrating stiffness in both legs, chest tightness, fatigue. Extreme fatigue remains, unable to work or have social life, can JUST look after myself, cooking etc
I participated in a triathlon in August in the Scottish highlands, so was very fit before all this and I also was outdoors a lot on holiday in Bulgaria in July. I am considering I have lyme disease. A huge symptoms for me is the alternating circulation in my hands, where right hand can often look much redder than the left which is always very pale, anyone else know anything about this ? And generally feeling really bad, like a zombie, you just feel so wrong. I am awaiting my lyme results so have been tested but I just wanted to know the experiences of others. I notice I can eat a lot and not feel full. Anyone else ? I am undertaking comprehensive stool analysis to test for parasites aswell.
With lyme do you feel really off, not like yourself yet others are sceptical ?
Would a haemotologist be able to identify infectious agents in the blood as i have an appointment next week. I just feel prior to this i was so healthy, alive and vital and now a fatigued wreck, emotionally void. Like i said zombiefied. My heart feels like it is not beating in my chest.
Hi David, speaking as someone who was diagnosed with acute lyme last September I can say that all of those symptoms sound like it to me. I've had all of them over the last six months. The word 'zombiefied' is spot on, I also still have lots of circulation issues, ie freezing cold hands and feet, and also muscle pains, eye/headaches, very low energy, sleep problems.
When you say you've been diagnosed with post-viral fatigue, do you mean a GP has diagnosed that? I can't believe they've done that without giving you a blood test. My advice would be to DEMAND what you want, ie a blood test for lyme, even if you've never seen the classic 'bull's eye' which usually happens after a tick bite. It took me four visits to the GP before they finally gave me a test and lo and behold it came back as acute lyme, even though I had a massive rash and swollen tie. I virtually had to beg them in the end because unfortunately they are pretty ignorant about the disease. Good luck and let me know how it goes.
Where are you having your tests done?
I just had one back from Igenx but it was Indeterminate, sometimes not easy to get an accurate diagnosis. Hope you have better luck.
I know we don't want to have Lyme, we just really want to know what it is we do have.
Thanks mate. Awaiting lyme test results, blood took about 2 weeks ago.
I think i should know tomorrow. BUT i am concerned that a negative result might not mean much as i have heard this happens with lyme. I am having real problems sleeping, often i feel really tired, doze off for an hour or two then awake for another hour or two then back to sleep for 5 or 6. I've never seen the bullseye rash but who knows it may have been on my back. Thanks alot mate. did the anti-biotics make you feel much better and how long did it take for you to feel well ?
Hi Margaret, i don't know. I plan on going back to the GP tomorrow. LDA patient support tell me my blood is probably sent to Porton in Wiltshire. LDA have been very helpful. (Lyme Disease Association). I just don't feel like me. I am taking oregano oil, mushroom formulas to help my immune system, keeping my diet natural but this thing whatever it is is not going away. And like i say i do feel completely zombified, incapable of joy, much emotion. Energy levels very low.
Hi David, I've had three courses of antibx now. The official line from my GP/specialist is that I've been 'treated' because my last blood test in February showed a slight improvement. However I'm still feeling pretty awful with same symptoms as listed above... Am now trying herbal route/acupuncture etc
Good luck tomorrow. Even if the results are negative you'll hopefully get a better steer on how to proceed.
How did you get lyme ? And how bad was your fatigue ? I was a super fit endurance athlete and i am now reduced to a slow walk, anything more and i will keel over and die. Did you feel like this, did the fatigue increase over time ? I've felt worse the past few weeks compared to the last few months. I'm curious about which anti-biotics you were prescribed incase i may need to do this privately because some lyme results are false negatives.
Hi mate, were your neutrohpils low in the beginning, if so what levels ? Did you have high iron levels also ? Which anti-biotics were you prescribed ? Surely you have to remain on them for longer ? Maybe even add in some probiotics. I have ordered this herbal supplement from _____ that is supposedly brilliant at dealing with lyme. It's called SPIRO. You might want to try that. Also going to use their immune formula. I've never been to the GP much the past 6 years but have heard the stories, and so don't want to take any chances. My oen local GP's have been as good as can be, but i might want then to treat me for lyme when the test is negative, do you think this is likely ?
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Hi Matt,
I've ordered a formula from _____ called SPIRO, you might want to check that out ? Were your neutrophils low throughout this ? What levels, platelets low ? High iron ? Surely you would be on anti-biotics for longer ?
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And another thing i am finding is that is i can eat huge meals and not feel truly full, and weight gain is seemingly impossible, 3000kcal day, minimum activity, i don't gain weigh....any similarites there ?
Yep I ran twice a week and played tennis/cricket once a week, haven't done any of these since I was bitten by a tick in East Sussex last July. Mild exercise on one day usually leads to feeling crap the next day, etc etc. I was on doxycycline.
I haven't had those weight issues but am off the dairy/booze/sugar as part of herbal diet so have lost quite a lot of weight.
Thanks alot Mate. Well i was triathloning in the Scottish Highlands in August, holidaying in Bulgaria July, could be either place. Also look into lauricidin, p73 oregano oil. I have some naturopahic training but never got round to completing my training because of this illness.
One important thing to know is that lyme comes with co-infections and we develop different symtoms, and there are more then 150 symtoms, in our case, my ex-wife started with sharp pain inside lower stomach, I started with headache and soon everytime i spent some time seatting I would get up and my legs would feel weak and exhausted I used to play soccer until I had to quit because on run in the field and woul loose my breath and my legs would almost give up of exhaustion, my son started feeling tired and heat, had to take cold showers at night to cope with it. I must say that it does drains us emotionally, phisically and financially. I dont have some of the symtoms anymore, but body pain and exhaustion stil and stomach problems cuz the months on antibiotics that sometimes is the better option to get rid off lyme.
Until you have positve test results you can start treatment and sometimes doctors know just by symtoms.
I live in Calgary and there is no many doctors to help with lyme disease but please check the nardella clinic in Calgary and also ananta health clinic also in Calgary.
Many people get well and start to enjoy their lifes after some of the treatments so hope is the case for you and all the others, we must have hope to be able to sleep at night.
Victor
Hi mate,
Was/is one of your main lyme symptoms the feeling that your heart is in a vice, that it is trapped ? Alongside the fatigue of course.
Thanks, hope to speak soon, this is how i feel. Awaiting lyme test results next week.
Hi Victor,
With lyme disease aswell as the fatigue was another really noticable symptom the feeling that your heart is in a vice, that somehow it is trapped ? I have been really noticing this for months. Of course ECG's are all fine. Hope to speak soon.
Hi David, yes, in my early stages of lyme (approx 2 months after the bite), I had a lot of serious heart problems for about a week, intense palpitations, numbness/coldness down the left side, heart pain... Nearly went to A&E because I hadn't been diagnosed with acute lyme yet. These attacks have died down since then but still some issues
Hi David,
I hope you are feeling a little bit better,
I did not experience that heart problem, but dr. risk in her video was talking about the symptoms and she said there is more than 150 symptoms and she mention the one when it feels like someone stepping on your chest.
please check dr-risk web page and view video, hope can give you some more understanding about how you feel.
let me know if it helps.
take care
Victor