Hello:
Will try and keep this short but must provide some background.
My journey for answers began 1.5 years ago with fairly sudden onset of bad burning neuropathy in my soles/lower legs/palms/lower arms. Also at this time, insomnia came on fairly sudden, can fall asleep but wake every 2-3 hours. These are the ONLY 2 symptoms that persist and I'd like to improve :)
Since onset of these primarily neuro symptoms in late 2006, have seen a variety of doctors for the FIRST time as an adult (now 39 years old). Basically all bloodwork has been normal, normal EMG/NCV, normal cervical spine MRI. Only thing questionable was a Lyme Western Blot from a specialty lab that was negative, yet showed a large number of bands as either + or IND.
Armed with the test results, visited a doctor specializing in Lyme. This person suspects I have Lyme/Bart. I say it's possible since I do have risk factors, but must first describe what happened to me in the 3 + years BEFORE the onset of nerve pain/insomnia.
Spring 2003: VERY bad cold/flu...this went on for 1 year until the Spring of 2004!!! Had constant sinus problems, 6 weeks of bronchitis, nasal drip, tonsil stones, sore throat and an almost conscious need to control breathing cycle, as if I was holding my breath unconsciously. Sought NO med help for this, was unpleasant but tolerable. Also, start of fatigue at this time along with VERY occasional numbness of my pinkie/ring finger while in lying position, could always shake it out, maybe ulnar nerve?
Spring 2004: Upper respiratory problems resolved, but continued exhaustion, GI problems (diahrrea), and a burning sensation in my right heal. Also almost passed out doing heavy yardwork in hot sun...never REALLY passed-out, but became dizzy, slightly blurry vision. Also twitching began, but came and went along with extreme weekness in upper right eyelid upon waking, usually resolved after being awake for about an hour.
Fall 2004: Another VERY bad flu, only lasted 7 days. Immediately after, developed Tinnitus in 1 ear (still exists) and started having night sweats and hot feeling along upper spine.
Spring 2005: Shooting/stabbing pains anywhere, but more in extremities. This came and went, but night sweats/exhaustion continued coupled with extreme agitiation and anxiety.
Summer 2006: Sudden lack of strength in ring/pinkie fingers (see 2003) on left hand...resolved in about 2 weeks.
Fall 2006: Within 1 month span, burning nerve pain as described at the beginning starts along with insomnia.
Without going on any further, is there ANY possible link to the VERY prolonged respiratory problems I had between 2003-2004 and the neurological symptoms I show now AND a tie to CPN?
I am currently undergoing VERY aggresive treatment for Lyme (IV/Oral) which might be my problem, but then I wonder about the CPN connection?
Have seen 2 neurologists who do NOT think I have MSi. I currently have normal to good strength/balance, just horrible burning nerve pain that is relieved by moving (yes, I cannot be seated without horrible burning, knees down, but instant improvement upon standing and walking)...basically cannot have constant contact in the sensitive areas, yet I can be touched. Also instant relief from burning areas with cool air/water.
I am basically OK now other than VERY bad neurological pain and insomnia. Still have the tinnitusi, but not bothered by it.
Would be extremely greatful for any ideas/experience/advice.
Thanks, B3Better
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Dx'd with Lyme/Bartonella 5/1/08...Currently taking IV Rocephini 4G/4Days per week / 1000 MG daily of Flagylii / 500 MG Daily Azithromycin (on the fifth week of treatment) but not there yet!
B3 Better - Welcome to the
B3 Better - Welcome to the Board.
After reading your post, I'd say like many here you might have both Lyme and CPNi as well as possibly other tickbourne infectionsi. Many who post here have mixed infections.
The testing for CPN just like the testing for lyme is very inaccurate in terms of missing the detection of many people's infections. Many here end up treating CPN empirically.
Also, as the successful treatment of Lyme involves addressing all of it's life forms, so does the treatment of CPN. Try reading the Getting Started tab at the top of the screen and it will explain this concept further.
So yes, you may well have a CPN or mycoplasma infection to go with your Lyme infection. Barrel of monkey fun isn't it.
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Daisy - Husband on CAPi 5/07. "When Going Thru Hell, Just Keep Going", Winston Churchill
Did you get tested for
Did you get tested for Cpni? If so, what are the results?
Timaca
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Diagnosed with lyme disease 3/05. Diagnosed with chronic HHV-6, EBVi, VZV, and HSV1 6/07. Diagnosed with CPni 5/08. On antibioticsi for 2+ years, Valcyte (antiviral drug) for 9 months. Currently on 100 mg doxyi bid for Cpn and acyclovir for viruses.
Hi Timaca: NO I have not
Hi Timaca:
NO I have not been tested for CPNi...would the test results be affected by my current ABXi therapy (which began only 3 weeks ago)
BTW, my respiratory problems go back to 2003-2004...I realize my sxi's at that time are in line with CPN and with my current neuroi problems, thought there might be a connection? Something is causing my problems!
Are CPN tests conclusive? Any chance I'll have a false neg or positive many years after a possible infection?
My primary diagnostic sx is peripheral neuropathy, even though it presents differently than those who have it from diabetes, hiv, alcoholism - all of which I do NOT have, but I do have some type of infection based on my Lyme tests - which might mean I just have Lyme?
My skin sensations do get much worse when hot/warm...I know about MS and heat intolerance, but again, I don't really present quite that way either, no bladder/vision problems. No Numbness other than fingers years ago that I could 'shake out'.
Really hopefull for help and experiences here.
Warmest thanks, B3Better
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Dx'd with Lyme/Bartonella 5/1/08...Currently taking IV Rocephini 4G/4Days per week / 1000 MG daily of Flagyli / 500 MG Daily Azithromycin (on the fifth week of treatment) but not there yet!
Primary sxi's since late 2006 - Burning sensation in lower
Hi B3Better!Have you
Hi B3Better!
Have you checked your vitamin b12-levels?
Low b12 can cause a lot of neurosymtoms and other symtoms too.
Also this cpni bacteria binds/use b12 in some way, not sure how.
Even if bloodtest for b12 is fine one can still have low b12 in cells, my b12 doc told me.
Good luck and welcome!
Best Wishes from Maria
Hi Maria: Thanks for your
Hi Maria:
Thanks for your response. When the nerve pain started, by B12 was checked in January 2007. It was in 'normal' range. One of the first things I did was get B12 supplementsi - not methylcobalamin at first, but now take that in sublingual form.
Have considered injections. Might go that route soon? I self-pay for everything so need to find a reasonable source, any ideas? Not thrilled about shots, but worth it to stop/improve the neuropathy.
I have a visit with my LLMD in 2 weeks, hope to cover some of this and more. He's very open-minded, or so I think. I know he's aware of mycoplasma infectionsi, but don't know his stance on CPNi?
Thanks everyone, really appreciate your ideas. Please send along anything you can think of?
Kindest Wishes, B3Better
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Dx'd with Lyme/Bartonella 5/1/08...Currently taking IV Rocephini 4G/4Days per week / 1000 MG daily of Flagyli / 500 MG Daily Azithromycin (on the fifth week of treatment) but not there yet!
Primary sxi's since late 2006 - Burning sensation in lower
Good that you take
Good that you take Methylcobalamin!
I take that form in my b12shots once a week. I also take 2 pills with b12 and 2 pills with folic acidi every morning. B12 and folic acid work together.
You can read about b12 and other supplementsi I think its in cpni handbook.
Good luck!
Maria
B3Better~It's worth getting
B3Better~
It's worth getting tested for Cpni. I ended up with high titers to the IgGi and IgA antibodies, and an ID doctor was willing to begin treatment based on that.
It helps to have some idea of what you are trying to treat. Hence getting tested makes sense.
Best, Timaca
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Diagnosed with lyme disease 3/05. Diagnosed with chronic HHV-6, EBVi, VZV, and HSV1 6/07. Diagnosed with CPni 5/08. On antibioticsi for 2+ years, Valcyte (antiviral drug) for 9 months. Currently on 100 mg doxyi bid for Cpn and acyclovir for viruses.
Also check mycoplasma
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CAPi since 11/06 for CFSi. Cpni, Myco P, CMV, HHV-6 infectionsi. Doxyi 200mg daily, Zithromax 250mg MWF. NACi 2250mg daily. All other supplementsi.
Hi B3Better, WelcomeI have
Hi B3Better, Welcome
I have peripheral neuropathy, (although sometimes I think it may be peripheral vasculitisi that has brought on the peripheral neuropathy) for me it is the lower legs, feet and tongue which are the worse. Hands not so badly affect, but I do have occasional problems.
As tests for Cpni are notoriously unreliable you may want to test yourself with NACi. People suffering from a Cpn infection often react to NAC with flu like symptoms. See here
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Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006