I'm totally lost at this point and looking for guidance.
After being treated for a year for diabetic neuropathy and only getting worse my MD sent me to a Neurologist because of my complaints of all or body aches and pain.
My CPK, C-reactive protien and sed rate are all elevated. Tested positive on the Lyme serology but negative on the west blot with only 2 bands present P58 and P66.
As I said I hurt all over, I've had vision changes, hearing loss, and now dealing with headaches. The neurologist started me on Prednisone and that scares me due to everything I've read says this is a no no with LD.
All replies are greatly appreciated. Posted by TF (Member # 14183) on :
If you take the prednisone, you could regret it until the day you die.
It could give you a case of incurable lyme!
"More evidence has accumulated indicating the severe detrimental effects of the concurrent use of immunosuppressants including steroids in the patient with active B. burgdorferi infection. Never give steroids or any other immunosuppressant to any patient who may even remotely be suffering from Lyme, or serious, permanent damage may result, especially if given for anything greater than a short course. If immunosuppressive therapy is absolutely necessary, then potent antibiotic treatment should begin at least 48 hours prior to the immunosuppressants." (page 12)
Band 66: Heat shock protein. This is the second most common borrelia antibody.
In my clinical experience, if a patient has symptoms suspicious for borreliosis, and has one or more of the following bands, there is a very high probability the patient has borreliosis.
These bands are 18, 22, 23-25, 28, 30, 31, 34, 37, 39, 41, 83, and 93.
[---- from DR C's update from 2005 --- ----The significant antibodies, in my opinion, are the 18, 23-25, 28, 30, 31, 34, 39, 58, 66 and 93.----]
Posted by nonna05 (Member # 33557) on :
Incurable lyme?????
I've not seen this term here before....what amounts are you talking about??
As I said on several posts. i had shots for back and hips ,, a few before with HMO, I didn;t connect problem with health and those shots..
But Spring and Summer 2010 I had 2 shots for back at better clinic (maybe stronger/name brand?) in late March, 2 in back in June,
To help me move, cause grandkids visit,,I Didn't feel great after that. Kinda in my inner gut didn't feel right about it and didn't feel ,health wise the same.
Then Early Sept. I had shots in each hip....The doctor got the exact same script from previous Doc. and did shots in offie.
8 Hours later all H--L broke loose in my body ...Unbelievable ,huge reaction,,,.
Called RA who gave shot, she said didn't expect that for 24 hours and was on her way to Germany...
Why would she do it if that was expected???
Anyway,it took this illness to a whole other level..
I used to be able to take a couple ABX's , Tylenol #3,and low dose Valium and do a spurt of activity, small trip, dailey errand, with effort.
New I was sick with infection, didn't know problem and neither did 7 ID docs...usual CR__! I was tested positive for Brucellosis twice and since then it comes up neg.
I can no longer "shore myself up for a bit".
I was diagnosed in Aug.. and have had 3 treatment changes.....some inprovement,in a way, but still down most of the time...............
I am taking Mepron, zith,omni, deplin, atriminison sp?,..(to add bactrim)...noni, samento, burbur, parsley, something for virus and several other drops and supps..Vicodin for pain and Diaz/Val for muscle spasms and crying jags.....trying to keep last two to minimum..
TuTu has tried to calm me by saying it takes a while to see the turn,,,I think Jackie also said this.
Mepron was started about 3 months ago???
may be off on that a bit,little more recent..
Long reply to get anybodies help, suggestions, hope that wasn't to much steroid and it's timing.
I think Keebler wrote something about help from steroid effects. Not sure
I always feel like things /meds aren't getting in where needed to work...cause I take everything bunched together,or body not taking in, or I'm so frustrated with this bed and 4 walls...
Just last Summer I could do more,but crashed ,hard in Sept.
I'm so tired of crying about this and missing days upon days and missing what's left of people in my life.
Posted by WPinVA (Member # 33581) on :
I too was given steroids prior to my Lyme dx and I'm sure hoping it didn't make me "uncurable." I was on antibiotics at the time - although probably not the right ones - so that's something.
In any event, what's done is done, and we can only look forward.
Posted by Lymetoo (Member # 743) on :
Those who received the Lymerix vaccine do have incurable Lyme. Sad, but true.
I was treated with oral steroids about 8 yrs before I was finally diagnosed with Lyme of 42 yrs standing.
Thankfully, I only took them about 2 months. And I am well now.
But .. had I known about a connection .. I would NEVER have taken a chance.
Bobbie has the chance to turn things around, so that is good.
Just keep plugging away, nonna and WP.. there is plenty of hope! Posted by Keith2612 (Member # 33790) on :
Trust me Bobbie, as a type one diabetic for 15 years...using an insulin pump, which is the greatest invention ever.
The Dr.'s will blame EVERY Lyme symptom you have on diabetic neuropathy!
I have argued with at least 10 different ones that it doesn't leave you almost disabled within a month if diabetes is causing it. It would be a gradual process.
Once they see diabetic on your chart, they have a reason for all your problems. The sad part is....it's pointless to argue with them.
DO NOT take the steroids, and find you an LLMD as soon as possible!
Posted by Keebler (Member # 12673) on :
- nonna05 wrote:
" . . . I think Keebler wrote something about help from steroid effects. Not sure . . ." (end nonna05 quote)
--------
Absolutely NOT.
There have been documented deaths from steroid use in those with undiagnosed or under-treated lyme.
(Undiagnosed porphyria can also be a complicating factor as steroid use can send porphryin levels lethally sky high.)
Steroids nearly killed me, many different times.
And I can't tell you how many other terrible cascades I had to tumble from prednisone use, or even shots in this or that joint for years, each making me worse.
Absolutely NO to steroids -- other than in a life-threatening situation or to save vision, hearing or lungs and then - ONLY with the guidance of an ILADS-educated LLMD or LL ND.
Of course, if it's a life or death situation, and steroids are absolutely necessary, you do what you have to to. But, it can be fatal if there is an undiagnosed stealth infection such as lyme and it's not countered with antibiotics.
Specific antimicrobials must FIRST be in place, if at all possible, and continued as per a LL doctor's advice.
I echo TF's "If you take the prednisone, you could regret it until the day you die."
I do. -
Posted by Keebler (Member # 12673) on :
- I hope you can find a LLMD soon. Your tests and symptoms do point to lyme. I don't think you need any more lyme tests but you should be assessed for other tick-borne infections.
Good luck. You can get better. As you said you've just stopped the prednisone, it may take some tampering off, depending upon dose. Medical advise is good if you can find a LL doctor to guide you.
In the meantime, when you call a LLMD to make an appointment, ask if there are certain supplements that might help for the time being.
I would consider allicin (freeze dried garlic), or Olive Leaf Extract by Seagate.
when i first became ill, a doctor put me on a VERY high dose of prednisone for 6 weeks straight.
i am terrified now... i can't imagine feeling this way forever. eek!!
Posted by Razzle (Member # 30398) on :
I've been on steroids off and on a bunch before knowing I had Lyme. I even was on immune suppressants (Azathioprine, Methotrexate) before I knew I had Lyme. But I do feel relief from abx. So there is hope for those who have had the immune suppressants. Don't give up!
Posted by katiebobatie (Member # 28753) on :
i'm glad you are doing better razzle! thanks for the encouragement
i've been on anti-biotics for 2 years now, and it seems like i am so far behind on recovery compared to all the treatment i've recieved :/
maybe it's because it took me so long to get diagnosed. i'm sure the steriods didn't help though.
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I'm so tired of crying about this and missing days upon days and missing what's left of people in my life.
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