posted
I have received a copy of my 3rd 'negative' lyme test from Health Protection Agency Southampton Laboratory.
Borrelia C6 (peptide) EIA Negative B burgdorferi IGM immunoblot Negative B burgdorferi IGG immumoblit Negative
Comments We should be most grateful for any clinical and tick exposure risk history. This result does not exclude recently acquired infection. Recommend check later sample, ? rising titre if clinically indicated. No serologoical evidence for longstanding infection.
Biten Dec08. EM rash + ongoing symptoms.
I have just got a copy of the written report from one doctor to my GP.
He says I may have a post-infective neuropathy.
I suggested the above comments indicated to me that there may be a slight rise on a titre and it may be worth another test but he was having non of that! Said I would not understand about infections because I had a mathematical brain not a medical brain!!!
He included in his recomendations that "it would not seem inappropriate to treat with a small dose of steroids to see if symptoms might improve somewhat". He also suggested that i have nerve conduction studies.
He notes I also have low blood pressures & pulses and neutropenia.
Any ideas on the above comments would be appreciated.
Posts: 69 | From UK | Registered: Jun 2009
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lightparfait
Frequent Contributor (1K+ posts)
Member # 22022
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NO STEROIDS! BIG MISTAKE!
Posts: 1009 | From NJ | Registered: Aug 2009
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lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
Okay RUN, don't walk from this doctor!!!! Go to the "Seeking a Doctor" section here and post asking for an LLMD (Lyme Literate Medical Doctor) nearest you.
Lab tests for Lyme are notoriously wrong and they miss up to 70% of all Lyme infections. You need to be tested through a tick specialty lab like Igenix. I think you can even go to their website and order your own test.
About steroids - they DRASTICALLY weaken the immune system - IF you do have Lyme or some other infectious disease is causing your symptoms then the steroids can make you MUCH sicker. Please do not take steroids!!
A "medical brain" huh? Wow, I have heard it all!!!
First of all, to posess a TRUE "medical brain" you have to have an "open-minded brain", which most doctors are completely incapable of. You are absolutely right to question your diagnosis and treatment - it's your body and your life! Don't ever let someone else drown out your own gut instincts and intuition. If your gut is telling you that something is wrong then listen to it - it'll never fail you.
Okay, I'm so angry at this doc and I really need to get off my soapbox, but please do get properly tested through Igenix and find a Lyme doc ASAP.
What are your symptoms now? Ho wlong have they been going on?
Lauren
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
what the ____? run, run, run....
don't ever, ever do steroids. I did before i knew the truth and it threw me into the worst mess ever.
go to a reputable llmd fast.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Dawn in VA
Frequent Contributor (1K+ posts)
Member # 9693
posted
I agree with the above.
I don't know how hard it is to find an LLMD in the UK, but if it, at the very least maybe you could try taking ILADS/Dr B's treatment suggestions to another MD for appropriate action.
If you had the EM rash and a known tick bite AND have continuing symptoms, you have to get into someone good sooner rather than later.
Nerve conduction studies would be OK, but don't wait for the testing/results before you get on good treatment (if you're not already). Never wait for any test if you've had the EM.
Sorry you had to go through an appt like that. That doc sounds incredibly condescending.
-------------------- (The ole disclaimer: I'm not a doctor.) Posts: 1349 | From VA | Registered: Jul 2006
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posted
There are no LLMD's in Wales taking new patients. Only one in England who is very expensive. Not sure I could cover the costs. I am therefore trying to find some one in the NHS who has at least half a brain.
If I could get a positive test I feel it would help my case. Unfortunately I don't think they would recognise Igenex.
My GP has given me 7 weeks doxy, stopped about 1 week ago so im going to wait another week or 2 and send to igenex anyway- at least I will know. She has been very supportive but has asked for specialist advice as to how to proceed. (see above lol)
Current symptoms - fatigue, constant tingling/vibrations manly in wrists & ankles. Low blood pressure, slow heart beat, constant ringing in ears. Pain in ankles & knees. Joint clicking. Low white blood count. I also get an electric shock feeling in the ankle & around the scar from the EM.
I have now been referred to an infectious diseases doctor (4th Sept) & a neurologist (no appointment date yet). Guess I'm going to have to wait again. When I left the last appointment I just burst into tears, waiting is a nightmare. Im definately going to refuse the steroids.
Posts: 69 | From UK | Registered: Jun 2009
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I was prescribed steroids 3 different times in 2007, all while having Lyme and being misdiagnosed.
It is 2 1/2 years later, and I am still bedridden from Lyme and co-infections.
My little girl and I began treatment at the same time, she with no steroids in her background and myself having taking large doses of prednisolone.
She is completely well, I am still as sick as could be.
I am sure that one of the reasons that I am not getting any better is because of the steroids I took.
Posts: 151 | From SW US | Registered: Feb 2009
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lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
Panda, have you considered a rife machine? I know it's kind of "out there" treatment wise, but they really do work. You can get one in a couple weeks time and at least use that until you can get proper antibiotic treatment...
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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posted
Thanks everyone, Im going to print off the info on steroids and take it with me on my next appointment.
Lauren, i've looked into rife machines, definately interested. I'm going to do more research.
Veromia, I am also interested the salt/vit c protocol - those images are really worrying. How bad for you is all that salt? I've spent years avoiding salt whenever possible due to a family history of heart disease.
I read in thread after thread on this website about problems with tests. This disease is so difficult to deal with, especially when your not even sure you've got it in the first place and everyone around you thinks you've gone crazy.
Posts: 69 | From UK | Registered: Jun 2009
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quote:Originally posted by middlesizedpanda: Said I would not understand about infections because I had a mathematical brain not a medical brain!!!
That comment definitely belongs in the duckpond! I shudder to think what kind of brain he has left, if any.
Many folks with an EM and symptoms still do not test positive. Sometimes they do after being treated some.
My opinion is that you don't need nerve conduction tests. Nerve mess-ups come with the territory and can be helped by treatment.
I'm sorry to read that LLMDs are practically lacking in the UK. Shouldn't be like that. I know some folks fly over here for treatment.
Posts: 13171 | From San Francisco | Registered: May 2006
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linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
I took a round of steroids this past summer for my asthma, really had no choice as I couldn't breathe. Anyway, my CD-57 dropped from 35 to 17 in two months.
It suppresses immune function and feeds lyme as my llmd told me.
Avoid them at all costs. Some llmds will give abx as a backup if you absolutely have to take them, but if you don't I wouldn't do it.
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