Discussions By Condition: I cannot get a diagnosis.

Can someone perhaps point me in the right direction

Posted In: I cannot get a diagnosis. 3 Replies
  • Posted By: danny cube
  • June 15, 2008
  • 00:31 PM

hi

My life like many others on here totally sucks and has so for a long time due to illness...started when i was 19 with pain in my neck joints ..guessing it was the muscles in between the vertebre perhaps...then few weeks later started getting minor tremors and spasms in arms and leg muscles ..then from then it pretty much over the next few years started to spread to every muscle - head to toe..5 - 6 years into it other symptoms such as visual disturbances , tingling , bleeding gums ,chronic pins n needles ,,stabbing pains developed,,non-restorative sleep. Tried every type of physio and anything else u can name under the sun. Mri was "normal" of head and neck....

Went to the doctor 4 years ago and asked him to test me for lymes disease and he said he'd test me for rickettsia instead - which i tested positive to .....been seeing a specialist for the last few years but im wasting away here still...he says i have "multpile infections" due to some levels in my blood work being consistantly raised. He put me on clindymacin recently to start ridding of the infections and they seem to just make me even more weak / fatigued....im getting b6 and b12 injections weekly and yet my b12 levels are still low when he tests me each month..

anyhow ..any suggestions would be appreciated and perhaps maybe pointing me in the direction of which sub forum on here mite offer me further help

thanks heaps

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3 Replies:

  • Im wondering if you get post excertional fatigue to physical or mental stressors????? Im asking that cause im wondering if you could have chronic fatigue sydrome. Im wondering that cause CFS can cause a lowered immunity and Rickettsia is VERY COMMON in CFS.. they dont know if the Rickettsia comes first or if the CFS allows the Rickettsia to reactivate. Some CFS specialists have found that up to 50% of CFS patients test positive to Rickettsia. (other CFS specialists have noticed a link too). Conclusions: In patients with chronic illness, rickettsial DNA in peripheral blood and/or rickettsial seropositivity may represent exposure to rickettsiae or underlying rickettsial diseases. It is not known whether the presence of rickettsiae is causally related to the patients’ chronic illnesses, or reactivation of a latent rickettsial infection. above quote was from http://qjmed.oxfordjournals.org/cgi/content/abstract/hcm149v1 Dr Graham stated that of his 611 CFS patients, 337 were found positive for rickettsia (mainly spotted fever). quote above from http://www.ahmf.org/05phillipsoverview.htm (the actual study is online too, but i cant currently find the study link) C.L.Jardin - 'Common Clinical and Biological Windows on CFS and Rickettsial Disease'-discussed the infection theory of CFS-ME and made out a powerful case for a major role for Rickettsiae (Q-fever) as the causative agent for CFS-ME. Lymphocyte studies on CFS-ME patients and patients with Q-fever endocarditis were amazingly similar. Five different strains of Rickettsia were identified in patients suffering from CFS-ME, FMS, RA, MS, depression, psychosis, heart diseases, and auto-immune diseases. Of 500 CFS patients 87% were antibody positive for Rickettsia. From a data base of >3000 patients 4 factors were found to be important- length of illness, virulence of the germs, their co-habitation, and the state of the host's immune system. These studies suggest that auto-immune diseases could have an infectious origin. Treatment varied from 3 months to 3 years. A 7-12 months course of high dosage tetracycline plus a macrolide, fluoroquinolone or metronidazole was very effective - in one case from wheelchair back to horse riding. above quote from http://osiris.sunderland.ac.uk/autism/hooperpg1.htm later started getting minor tremors and spasms in arms and leg muscles ..then from then it pretty much over the next few years started to spread to every muscle - head to toe..5 - 6 years into it other symptoms such as visual disturbances , tingling , bleeding gums ,chronic pins n needles ,,stabbing pains developed,,non-restorative sleep. all the following can be CFS also called chronic fatigue immunity dysfunction sydrome (CFIDS) symptoms esp the non restorative sleep! http://wwcoco.com/cfids/what.html
    taniaaust1 2267 Replies Flag this Response
  • all the following can be CFS also called chronic fatigue immunity dysfunction sydrome (CFIDS) symptoms esp the non restorative sleep! http://wwcoco.com/cfids/what.html^^^never heard of this in all my years of hunting for relieft ........and i hope i dont have it lol but yea ,,my specialist told me of the link between cfs and rickettsia yet always seems to find something different in my blood work or symptoms that makes me ATYPICAL from most other cfs patients. he also states that clindmaycin rids all these infections from my body on a par with tetracyclines. anyone used clindmaycin befoer in here?
    danny cube 24 Replies Flag this Response
  • I also have chronic fatigue symptoms and my doctor said my blood tests showed I was "highly positive" (256) to r. rickettsii (by serology) . He said I should take two weeks of doxycycline 200mg. Does anyone have any experience with taking antibiotics as a treatment for fatigue symptoms based on blood tests showing antibodies to r. rickettsia? I had previously been treated for chronic Lyme (borrelia) also based on antibody tests, with long term IV antibiotics (unsuccessfully). Before taking any more antibiotics, I would like to find out more how experimental such a treatment is for rickettsial disease and what the prognosis is. Thanks,A. rickettsIm wondering if you get post excertional fatigue to physical or mental stressors????? Im asking that cause im wondering if you could have chronic fatigue sydrome. Im wondering that cause CFS can cause a lowered immunity and Rickettsia is VERY COMMON in CFS.. they dont know if the Rickettsia comes first or if the CFS allows the Rickettsia to reactivate. Some CFS specialists have found that up to 50% of CFS patients test positive to Rickettsia. (other CFS specialists have noticed a link too). above quote was from http://qjmed.oxfordjournals.org/cgi/content/abstract/hcm149v1 quote above from http://www.ahmf.org/05phillipsoverview.htm (the actual study is online too, but i cant currently find the study link) above quote from http://osiris.sunderland.ac.uk/autism/hooperpg1.htm all the following can be CFS also called chronic fatigue immunity dysfunction sydrome (CFIDS) symptoms esp the non restorative sleep! http://wwcoco.com/cfids/what.html
    Anonymous 42789 Replies
    • December 15, 2009
    • 00:16 PM
    • 0
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