New here- just diagnosed, years after unexplained symptoms

[Hannah33]

I got lab results over the phone the other day- Western Blot IgM .98 ( positive = + .91)  positive for bands P23, P41.  My first disease specialist appointment is April 19 th.   I have had symptoms for many years, have been tested for Lyme several times in the past but I read the labs preformed were unreliable ( spinal tap 2007- rapid PCR negative, CSF elevated protein, rare WBC's seen inGRAM stain).  Symptoms are bad, the worse is near faint all of the time, extreme muscle weakness ( can hardly walk up/down hills, peal a whole apple, chew food (tongue is too weak to push food around) twitching all over, cramps,ringing in the ears, lose eyesight once and a while, and so on.  The more I do physically the faster I get worn out and weak, like I did a vigorous work out.  I have hypothyroidism ( hashimoto's) thyroid levels are fine ( before I took Rifampin for 14 days for MRSA).  I recall fatigue symptoms back in 2002 (took energy pills then to stay awake)  have had 3 more kids since then and worried I may have had it back then.  I have read many things since I got my labs, but I realized sometimes you get the better truth from the people who are going through the same things, then from the Drs. who don't have the time for you.  Also have gone through many Dr.s who can only tell me " I know what you DON'T have".  Till now.
I read treatment is not that successful.  I just started taking (on my own) Fish Oil , co Q10, V-C, V-B12 ( V B12 was on low side 281, norm. is 211-911)

[Hannah33]

Thank you for your response.  If you don't mind me asking, how long have you had symptoms, and when did you get diagnosed? Is there anything helpful as far as relief of symptoms?  (silly question) but I can't keep up with family of 6.  Exhausted, energy drinks, and coffee doesn't work neither does protein bars.  I can hardly make it to dinner time, to make dinner.
  Never checked for co infections yet, never even looked into it yet.  I am going to see an Infectious Disease MD, but hard to have trust in some Drs.  If I don't feel comfortable I am going to move on to the next.
  What are the chances of getting rid of this Lyme disease.  There is so much controversy on the whole issue of treatment and if it is really out of the system.

[JackieCalifornia]

Golly, having three (more!) kids would do anybody in.  :)

Sorry you are having a rough time. From what I read, band 23 that you tested positive on is specific to Lyme, meaning no other disease makes that band light up.  Band 41 can be Lyme or something else, so it's not as useful as other bands for diagnosis.  Sometimes after a long-existing infection, there isn't much reaction on the tests at all, so your immune system is still active against whatever you have.

Were/are you tested for coinfections carried by Lyme ticks?  They can be as nasty as Lyme and complicated the symptoms and therefore the diagnosis.

Are you going to see an infectious disease MD on the 19th?  Let us know what s/he says.  Some ID docs have a broader understanding of Lyme; some don't. The ID doc I saw was useless.

(If your gut starts getting sore, you might be like me and can't tolerate fish oil over the long haul.  I liked the effect on my skin, hair and eyes and my ability to think, but it was doing a number on my stomach and colon. Took me a couple of months to figure it out, and it doesn't bother *most* people, but I did some reading and found out it's irritating to some people, and I guess I'm one.  Been living on bananas and rice and applesauce and zucchini squash for about 3 weeks now, and it's getting better, but I could really use some real food!)

Let us know how it goes at the MD -- take care.