anesthesia - lyme and/or cfs?

Discussion in 'Fibromyalgia Main Forum' started by znewby, Mar 21, 2013.

  1. znewby

    znewby Member

    I have read articles on cfs that explain that people who have cfs react differently to anesthesia than healthy people. They sleep a lot longer before they wake up from the anesthesia.

    We always thought my daughter had cfs until she was diagnosed with lyme.
    But now I am not so sure that she doesn't have both cfs and lyme because I recall that she slept longer than any dentist had ever seen anyone take to recover.

    Does any one know if people with lyme also react differently to anesthesia? Thanks.
  2. Nanie46

    Nanie46 Moderator

    Hi znewby,

    Because the Lyme spirochete is so complex, and can invade every tissue in the body, it can cause changes in so many things in our bodies, such as hormones.

    Then add in other factors like people with MTHFR mutations and other things, and I think it is possible that any Lyme patient could react differently to anesthesia.

    There are so many factors that make us all different, even if we have the same illness.

    My LLMD diagnosed me with CFS after my Lyme diagnosis. He said my CFS was a result of the Lyme infection. I had already been diagnosed many years earlier with FM. He said my FM was also a result of the Lyme infection.

    I pray for your daughter's recovery.
  3. znewby

    znewby Member

    I remember years ago when we did not know what was causing all these symptoms and you and my daughter both happened to seek the services of Dr. Dantini.
    It has been such a breakthrough to find out what was behind all this.

    Dr. Chia seems to have made a lot of progress is finding that many cases of cfs are also related to an enterovirus (as i read recently on the cfs patient advocate site). I guess i am also wondering if my daughter started off with the enterovirus and added on the lyme later.
    I have a lot more hope now for her recovery. Nanie46, have you been able to achieve some progress in regards to your symptoms?
  4. Nanie46

    Nanie46 Moderator

    I made a lot of progress with the help of a good LLMD.

    I no longer have fatigue, brain fog or insomnia.

    My pain and stiffness was decreased.

    It is possible to have other infections and factors that we don't even know about, so it helps to keep researching all the time and trying new things.

    I find "better health guy's" site very helpful because he posts summaries of all the info he collects from all the seminars that he goes to. There is lots of info about alternative treatments there.

    Dr Dantini helped me the most by identifying food sensitivities that were making my symptoms worse.[This Message was Edited on 03/22/2013]
  5. znewby

    znewby Member

    I also refer to the better health guy more than any site for lyme.

    the byron white formulas and rifing seem very promising and i think that is our new direction. she has a good lyme doctor too.

    Did you try the byron white formulas. they work well for some people.
  6. Nanie46

    Nanie46 Moderator

    No, I have not, but I have been reading about them and lots of other things.

    I just started Cryptolepis and I am taking lots of Japanese knotweed, both things that Stephen Buhner recommend.

    I am thinking of trying Salt/Vit C.

  7. It's so interesting to me that you mentioned Dr. Dantini! Back during the year when I first got sick, back in 2004... After many months of searching for answers, my husband came across Dr. Dantini's website and, long story short, I wound up trying his protocol... I too was tested for viruses (I had about 6 different active viruses at the time) and MANY food sensitivities.

    Unfortunately, I had to eliminate 20 common food items from my diet, but because I was so ill and weak at the time and had no one to help me prepare food from my very limited choices, I wound up losing too much weight (when I was already a normal weight to begin with) and I just got weaker and weaker.

    After 3 months on the elimination diet when I tried adding things back one by one, I seemed to have an adverse reaction to each thing I was adding back... I was so thin and weak I finally had to give up on the program.

    Nanie46, did you have to get off of that many food items? And znewby, did your daughter have to do that as well? I would be very interested to hear what your experience was.

    [This Message was Edited on 03/22/2013]
  8. Nanie46

    Nanie46 Moderator

    Hi Shel,

    I eliminated 22 foods when I did the elimination diet.

    It took me 5 months to do the diet.

    In the end, I found that the foods that were most helpful for me to continue avoiding were cane sugar, corn syrup/high fructose corn syrup and gluten.

    Dr Dantini was the Dr who was willing to order all the Lyme tests through Igenex lab in CA that I requested after my local Dr's refused.
  9. Thank you for your response... Sounds like Dr. Dantini really helped you... I'm so glad!

    It may be that the reason I wasn't helped more was that I was under unbelievable stress at the time due to Hurricane Ivan decimating our town and the aftermath that followed. We had to evacuate and were refugees for a week after the storm and then still had to come back and deal with all the damage... And there was quite a lot...

    I was in the middle of mono at the time, so the trip to evacuate was a nightmare in itself. Took us 12 hours to travel what normally would have been a four hour drive, due to all the folks fleeing from New Orleans on I-10. And when we got to Baton Rouge, I basically collapsed.

    So perhaps I was in such a hole, physically and emotionally speaking, that I didn't get the same benefits I would have gotten. And the Valtrex and Valcyte that he had me on didn't seem to help. So after being on those for a couple of months or so, I stopped taking them.

    Did he have you on Valtrex and Valcyte as well? And did they help?

    Thanks again, Nanie46, for your response...

  10. Nanie46

    Nanie46 Moderator

    Wow, Shel, so sorry to hear about all you went through with Hurricane Ivan. Then to be sick on top of trying to evacuate...oh my, no wonder you collapsed.

    I took Famvir for awhile. It was so very expensive though.

    I also took another much cheaper, generic anti-viral (the name escapes me right now). I remember I had to take a lot of acid-blocking medication with the generic med, so that the anti-viral med would be absorbed in my stomach.

    I did not notice any huge improvement from the meds.

    I did notice a lot of improvement from the elimination of foods.

    After that though, I got worse, when the chronic lyme (undiagnosed at that time) really reared its ugly head.

    More anti-virals did not help. That's when I did my own research of my symptoms, was pretty sure I had Lyme, and got Dr Dantini to order some Lyme tests.

    He was not really versed in chronic lyme, so I educated myself about how to interpret the band results for a western blot for lyme done through Igenex. That was very important since if I had believed the result that just said "CDC Negative", I never would have been diagnosed. Those band results are important.

    Then I found a Lyme literate MD who could help me.
  11. Thank you for your response... So glad you eventually found the "culprit" for your health problems. Doing our own research is so important... Thank God you did yours and knew how to interpret the results... Not sure I would have been able to do that (interpret the results).

    Was the Lyme test Dr. Dantini ordered for you different from the standard test that neurologist run? Because I had a Lyme test done on me a few years back and it was negative. But now I have read that THAT particular test can have false negatives and that there is a more reliable test that must be run to find out if you have Lyme. Do you know anything about that?

    So glad you found a good MD who has helped you. What is the treatment for Lyme? And are you completely healed of it now? Are you symptom-free?
    [This Message was Edited on 04/05/2013]