What % of your disabling symptoms that brought you down were fixed with your successful lyme treatment?
In other words, for each of you, how much of what was making you miserable and disabled is ultimately not the direct or indirect result of the presence of borrelia bacteria in your body?
The remainder could be due to other insidious sub-clinical infectious disease process (known or yet-to-be-discovered), other vague disease (chronic fatigue, and it's plethora of causes not related to the above), or real, true full-on traditional medical issue (diagnosed or not).
>>Person A feels like hellishly-ill. Person A dismissed by PCP with psychosomatic illness after years of normal workups. Person A reaserches Lyme, and orders his/her own lyme test. Person A has lyme. Person A goes to LLMD doctor, and does a year of combitorial ABX therapy and eradicates the spirochetes from his/her system.
Person A then feels ___________???? Maybe Person A's lyme was part of the reason he/she felt like slop, but was it everything?
So, do you make treatment of tick-borne diseases the panacea? The end-all-be-all of your problems? Do you keep going through the motions of treatment courses regardless of results, or at some point to you accept the progress of successful treatment, and recognize there may be more to the problem?
Posted by TF (Member # 14183) on :
I felt 100% once I completed my treatment. In fact, I felt 100% for 5 months before I completed my treatment. All of my symptoms were gone.
However, winter was coming on and my lyme doc won't let any patient stop treatment in winter. Winter is a stress on the body and could cause a relapse.
So, I had to continue taking antibiotics until spring.
I am still 100% rid of my horrible symptoms. I have the same life I had before lyme disease. I have the same brain I had before lyme disease. Praise God! It has been over 10 years now since I completed my treatment for lyme, babs, and bart.
I estimate that I had lyme and coinfections for at least 10 years before I was diagnosed. Still, I completely recovered. I thank God for this every single day.
Posted by Robin123 (Member # 9197) on :
I don't have any other infection that I know of. All my symptoms are Lyme symptoms. I literally have had to experience whether something works, even in the 25 years before I found out I had Lyme. For example, I just posted in General Support yesterday about having lived on flower pollen successfully to treat the growing fatigue I had.
My sense is that we can treat symptoms whether we know or not what they all come from, since a lot of the other infections will not test positive either. For that reason, I think it could drive us bananas to ask what it is we've got.
More useful, I think, is to discover what works to take down YOUR symptoms. If you can get a positive test, great, that helps.
But if you don't, try remedies to see what makes you feel better. I have a l-o-o-o-o-n-n-g list of those, and I'm grateful for them!
And for anyone who has a difficult time detoxing, there are tests that we can do to show compromised ability to handle mold, or methylation.
The 23andme test is very helpful for showing which enzyme pathways could be compromised, then follow up with a doctor who knows how to treat.
Posted by ohioperson22 (Member # 47837) on :
Thanks for the reply, TF. Your story is encouraging.
Robin123: thanks for suggestions. I've done the 23andme tests, as well as just about every test possible. All that's left is food allergy stuff (both IgE and IgG), and some other misc tests, one of which I should probably just spring for and do.
The one useful thing I learned from the 23andme is that I should be taking folinic acid (not folic acid), and also probably 5-MTHF. I should also be taking B12, but it is unclear what kind at this point. I won't go on a side-rant about the genetic polymorphism stuff, but some of the "information" out there about some of the stuff is every bit as bad and unsubstantiated as the IDSA guidelines are bad for lyme.