june-bug and CAAnnieB

Discussion in 'Fibromyalgia Main Forum' started by lilbird, Oct 17, 2005.

  1. lilbird

    lilbird New Member

    Anne and Angelina,

    Hi girls, How are you guys? I've still been herxing from the meds I'm on to fight the Lyme and viruses. But I have felt a little better the past few days.

    I went to lunch with a friend yesterday and I think I drove by your gym Angelina. I found out that my neice works at Contours Express.

    I'm hoping I start feeling well enough to start going to the gym again soon.

    Stay in touch,
    Cathy
  2. june-bug

    june-bug New Member

    I'm missing my work outs too!! I do the geriatric work out these days. Its good that your herxing, that means the meds are killing all of those little spirocheats!! I am still in a major flare. Its been this way since a few days before that nasty cold got me. Im getting depressed. I even look bad. The nerves running from over my eyes to the base of my neck are being affected.They keep getting stabbing pain and twitches. My eyelids are strange and saggy droopy. Its weird and quite creepy. This christmas when we go to Utah to visit my husbands family Im making an appt to go to the Salt Lake City FCC. My In Laws live 20 minutes away. Are you happy with the treatment their giving you at the LA location? I need someone to address the lyme and I think Ive got candida as well.Do you have to fly to the fcc or do they call you by phone now? What does your primary Doc say about it? Mine says I should try it.
    Take care of yourself,Cathy....hopefully the herxing will pass quickly. Keep in touch. Angelina
    [This Message was Edited on 10/18/2005]
  3. lilbird

    lilbird New Member

    I'm sorry your still not feeling well. I can not tell you how happy I am that I went to the FFC. I was getting no where here. All I was getting was a bunch of meds to mask the symtoms. I am now getting to the bottom of what is wrong with me. In addition to the Lyme they are treating me for some viruses and hormone issues. I think the Lyme throughs everthing off.

    If you can afford it, you should go, for sure. How long do you think you have had Lyme? I have had it for about 10 years or longer. They aren't treating me with ABX. The Dr. there said that ABX won't kill cronic Lyme. I take Cumanda and Samento for the Lyme and use Burbur for the herxing.

    I flew down to L.A. with my daughter for my first visit. That was the only one I did in person. I have done phone Appt. sense then. My primary Doc. is happy I went, she really couldn't treat me and is learning from my experiance. My insurance is not paying for any portion of the FFC, so I take the blood tests to my Doc. that the FFC wants done and she writes the order. That way my insurance will pay for that at least. My perscription insurance is seperate from my Medical insurance so they are paying for all my meds. Now that I know what is wrong with me I am getting to a point where I want to find a Dr. here that my insurance will pay for.

    What kind of insurance do you have. If you have a PPO they will pay for some of the FFC. If you have a HMO they won't pay.

    The Doc at the FFC will probably put you on lots of suppliments. Keep in mind that you can get most of the suppliments on line for about a 1/3 of the cost. I got all of my suppliments from them the first time and then went on line searching for the best price. I always stick with the same brand.

    I hope you feel better soon. And make that appointment at the FFC. I think you will be happy that you did.

    Cathy
  4. pumpkinpatch

    pumpkinpatch New Member

    Haven't seen you on here much. I see you've been herxing with the lymes treatment. Isn't that a crappy feeling. That biaxin is a killer for me. I can only seem to manage with the doxy.

    I have a question, did you have all the infectious blood test from the FFC list? ie. herpes etc. I'm curious about this because I didn't and am going to request those.

    I had the EBV, candida, cylmadia pneu., lymes so I'm missing some especially the viruses.

    With your Igenex IgG and IgM were they both positive or IND (slightly positive? and did you get tested for the lymes 2 co-infections. I did and they were negative. Only IND on the IgM.

    I think over time we are going to see real results. I'm hanging in there. Did you order ProBoost online? I see a site where it's really cheap.

    Cindy


    [This Message was Edited on 10/18/2005]
  5. lilbird

    lilbird New Member

    Its nice to hear from you. I have been herxing, and when I feel better I am tring to catch up on stuff at home. Things seem to get behind in a hurry.

    I have never had a positive Lyme test. They have all come back neg. For some reason my Dr. at the FFC does not use IngenX. I did have a tick with a rash at the site, so we both think that is what is going on with me. And I have been herxing with the treatment.

    The only infections and viruses that I have been tested for are, EBV, CMV, HHV6 and Mycoplashma Pneum. I tested positive for all of them except for the CMV.

    I do notice allot of people test positive for the Chlamydia Pneum. like yourself. But he didn't even test me for it. I'm not sure why they choose not to test for all the viruses.

    He has me on an antiviral and an ABX and Transfer Factor 600 to treat the viruses and Pneum.

    Let me know what your Dr. says about testing you for the rest of the stuff. Maybe I should ask for more tests also. Maybe it wont matter because the treatment would be the same. Don't know.

    How are you feeling? Getting better isn't going to be easy. But we will get there.

    Cathy
  6. CAAnnieB

    CAAnnieB New Member

    So sorry you are herxing, Cathy...I guess a positive spin is that you know you are killing off the "badies" & will emerge healthier after the herx!

    Sorry to hear you are flaring Angelina...It CAN get a person down, for sure...I hope you are feeling better very soon. It must be difficult to work at a health club & watch everyone doing workouts...The most I can do is walk & the Y Water Exercise program! But we can't compare ourselves to "normals", can we? Just do what we can.

    You are both blessed to be able to pursue the FCC's...Out of my price range, definately. But I at least feel like I've taken a giant leap forward with my recent sleep disorders being diagnosed & treated. I LOVE my CPAP machine! I will never sleep without it! It has lessened all my symptoms.

    Hey, I've got a weird question for you guys...I live near tons of vineyards...When it rained the other day; the next A.M. there was a yellow powder everywhere outside! (On roads, sidewalks, driveway) In fact it's still out there a little bit! Is it sulfur from the vineyards? I don't know that much about wineries & vineyards, so I thought I'd ask you guys. Did you notice this yellow stuff where you are? I've never seen it before! Weird! Kinda freaks me out!

    Cindy, I hope you find the answers to your questions. This getting better is sure hard work!

    Hope you are having a decent day.

    Blessings & Hugs,
    Annie
  7. CAAnnieB

    CAAnnieB New Member

  8. lilbird

    lilbird New Member

    I did not notice a yellow powder here. That's weird. I wonder what it was. Could it be some kind of chimical they use on the grapes. Kind of a scary thought. I do know someone that knows about grapes, I will ask him when I see him in a couple of weeks.

    How long ago did you get DXed with sleep apnea? I had a sleep study done about a year ago, it showed that I was not getting any stage 3 or 4 sleep but didn't have sleep apnea. Thats great that you have seen some improvment.

    You have Lyme also, right? There are so many of us that do. Did you have a positive blood test?

    Cathy
  9. june-bug

    june-bug New Member

    I get really freaked about chemicals, poisons, and pesticides. I hope the dust is something innocent.In addition to food,I even buy organic chemical free shampoo, soap and makeup. I cant be around scented products or cleaning agents either, it makes me worse.Cathy, I had Dr. Kremmer write me a lab for Igenix western blot test last year and I drove to palo alto to take the test at Igenix. My IGG came back negative but the IGM was positive and she said what made her more sure I have lyme is that the proteins that were positive were exclusive to lyme disease. When I was 13 my face (left side) went paralyzed after a camping trip and I was achey and out of it. Dr.s suspected lyme but I tested negative on an older even more unreliable method of testing. I was given a little abx just incase and got better shortly after. I led a fairly normal life with occasional migraines but always felt like something was brewing up inside. 2 years ago I got full fledged fibro symptoms with a concentration on the neurological stuff which brings me to Dr. Kremmer who said the abx they gave me back then was enough to keep the lyme at bay but not to kill it, so it came back when my immune system wasnt watching. She gave me one month of introvenus abx. It wasnt enough. How much do you pay at the FCC? I figured my ins. wont pay they are HMO blue shield. With all the money I spend on massages, chiropractic, TMJ specialist, every hot new expensive supplement in existence and the expensive clothes and jewelery shopping habit Ive picked up (its the only recreation I can handle) Im hoping to quit them all and put fcc in their place. Were also going to refinance to pay off some bills and fix up our place so Ill have some money for it.I kept my Igenix test so maybe theyll look at it. I hope my doc will write me any labs they need. Truth is, shes already run every lab I could think to ask her for. They have some tests that arent standard, dont they? Who is your primary Doctor? I see Pat Drier in Sebastopol. Shes really thorough and open minded. Hello Anne! Its great that your symptoms are less. what is a cpap machine? my mom has sleep apnea and I suspect my husband does,too I think his snoring and sleep talking habit is my so called sleep disorder. I lay awake listening to his snoring which sounds like a lawn mower and kicking him all night! LOL! Ill talk to you all later, Im posting a novel instead of a reply! Take Care. Angelina
    [This Message was Edited on 10/19/2005]
  10. pumpkinpatch

    pumpkinpatch New Member

    Yes June Bug you should give the FFC a consideration and I also have spent mega bucks on chiro, massage, biofeedback, acunpunture. All said they could help but always felt the same, just lighter pocketbook. If you have already tested positive for IgM Igenex you need to be on long-term antibiotics. That is probably the root of your problem.

    Cathy: I think the Dr. is going to add the antiviral with me along with the antibiotic I'm already on. If you are taking the doxy that is what they prescribe for the chylamdia pneu.

    What antiviral are you on? Were they expensive. I have to pay all out of pocket. Just found out recently I might be getting some money back from my Insurance. Keeping my fingers crossed.

    My energy level has definitely improved but the pain has totally magnified especially neck and shoulders.

    Cindy




    [This Message was Edited on 10/19/2005]
  11. lilbird

    lilbird New Member

    Cindy- The ABX I'm taking is Ciprofloxacin (cipro), The anitviral is Valtrex, the Valtrex was mega expensive, $500.00 for a month. I put the $ out of pocket and will get remburse me for most of it. But that was allot of money to put out up front. I have only been on the Transfer Factor for about a week, I take it at bed time on an empty stomach. I think its starting to work because I am sick to my stomach this morning. Kill some more bugs.

    Angilina- I'm really not sure what I have spent so far at the FFC. I have been meaning to add it up, just for kicks and giggles, HaHa. If I took a stab in the dark, I would say around $4000.00 sinse June. Thats including all the suppliments. It has been worth ever penny because I know I am going to get better now. And I think the biggest expence is over. I hoping it will slow down now that we know what I have and am on meds for it. Take all your blood work results with you, they will use them and you wont have to repeat them. My Dr. at the FFC said once positive for Lyme always positive for lyme, even if you test neg now. I agree with Cindy, you need to be on long term ABX.

    I think I have had Lyme sense I was 10. Thats when I had a tick with a large rash at the site. Way back then no even knew about Lyme. I did have one positive test in the mid 90's but I don't have the results anymore.

    I see Dr. Barbara Sinclair, She use to be in the office with Dr. Drier. When Dr. Sinclair left that office and moved to Healdsburg I had a choice to see Dr. Drier or go to Healdsburg with Dr. Sinclair. I choose to go with Dr. Sinclair. I now wish I had stayed in the office with Dr. Drier. Its a very good office. Last I checked she wasn't taking any new patience's. We nee to find a good Lyme Dr. in our area.

    Hope everyone has a good day,
    Cathy
  12. pumpkinpatch

    pumpkinpatch New Member

    $500. for Valtrex. Is that for 1 month?

    I'll have to "set up shop on the street corner" to pay for that one!! ha That's expensive. I wonder if there is something comparable for half the price.

    My husband starts a new benefit package in Dec. so my meds will hopefully be covered.

    I wonder if cipro is similar to doxycycline. How do they differ. I pay $86. for 120 pills for the doxy and $200 for 60 for the biaxin.

    Did you do the cortisol testing? I'm sending that in.

    Update: Ok I just checked the online pharmacy I order from the the Valtrex is $160. 500 mg 42 pills. Do you take more then 1 per day? Sorry for all the questions.

    Cindy
    [This Message was Edited on 10/19/2005]
  13. lilbird

    lilbird New Member

    The Valtrex is 1000mg one a day. Sound like you can get it cheaper.

    Cathy