I have classic lyme symptoms (dental, joints) with nero lyme issues such as head swelling, neck pain, brain fog, etc.
I have been tested via igenex but haven't received results.
I have been clinically diagnosed with lyme. I am concerned I have meningitis and I am going in for a lumbar puncture very soon to make certain something else isn't going on.
I am aware of the low accuracy with the LP to determine Lyme.
Assuming I have meningitis does doxy and azithromycin sound like it should penetrate the blood brain barrier with enough to get things under control?
What strengths are people seeing to do this effectively. Please message me if you don't want to post details of mg, etc.
I am not sure if I have co-infections yet, assuming I do does the above meds help with that also?
Thanks for any help on this, I just don't want to start meds and be taking the wrong stuff. I am not too trusting of drs after all I have been through.
Posted by Keebler (Member # 12673) on :
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lumbar puncture - oh, no!
Get to an ILADS-member LLMD. Lyme Literate MD. Lumber puncture is NOT a good test for lyme. If there are other things to consider, it is best to FIRST see a LLMD who is ILADS-educated or an ILADS member.
Does the doctor who is suggesting a LP meet the above criteria?
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM."
The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
the llmd that I am seeing said go ahead, the more information the better. There are some weird brain and head/neck swelling issues that causes some concern.
The main reason to do the LP is too rule out something else. I don't want to be on abx forever for something I really don't have or there is something else going on also.
Well what about the abx I mentioned, good/ no good?
Thanks
Posted by Keebler (Member # 12673) on :
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Your doctor should be telling you if the abx are indicated or not. It depends on what you are treating?
Lyme, yes. But, what about other tick-borne infections? Have you been assessed for those?
It's best to read through the ILADS and Burranscano guidelines. No one here can really say for sure what meds are right for you now.
Your LLMD should be guiding you but, yes, doxy and zith are part of lyme treatment.
As for the LP, what will they be checking for?
Seems to me that if you are just starting lyme treatment, they would wait and see if tx helps.
Do you have someone to tend to you for a few days or a week if need-be? BE sure to follow the instructions EXACTLY so as to help prevent post LP migraine that can happen.
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Posted by lymetime (Member # 21054) on :
yes, I have someone to help. they said 24 hours on my back with no pillow, etc.
llmd is guiding me, I have been sick for a long time, many different theories, I guess I don't trust drs anymore. I am not 100% convinced its lyme and I am through playing the wait and see approach if you know what I mean. Its been a real long time and I need answers.
Thank you for your help, why is a LP that big of a deal/issue? I guess I don't understand...