Sandy, I'm still Herxing, 20th day now!!!!!!!!!!!!!!!!!!11

Discussion in 'Fibromyalgia Main Forum' started by Dalphia, Nov 11, 2005.

  1. Dalphia

    Dalphia New Member

    Sandy, just wondering if you are any others receiving treatment at one of the FCC's have experienced 20+ days of heavy Herxing. I am beginning to think perhaps one of the supplements or medications is going against. One day I think I'm better and then in a few hours seems as if all of the Herxing symptons come from no where............I'm hanging in there but feel it is time for some relief.

    Maybe I need to really address this with Dr. B. on Tuesday in that I seem to be getting physcially weaker with each day. Probably the normal process for me and I do realize none of us will have the same reactions and the Herxing process varies with each individual.

    Any suggestions will sure be welcomed. Did you experience anything like I'm describing?

  2. acesk

    acesk New Member

    I also could not put up with the side effects - I cannot afford to "Feel worse till I feel better" so I discontinued everything after 4 months. I still work full time and travel for work and couldn't put up with the bad sickness type feelings from the FCC protocol.

    I had a "long distance package" so I didn't get any IVs except for my only visit and that one didn't help.

    Feel better.
    Sue in Florida
  3. Dalphia

    Dalphia New Member

    So you made it 4 months and worked as well dealing with the Herxing, it must have been very difficult to handle your work related responsibilities, plus traveling, you have to be one tough person.

    Since you gave up the protocol how are you doing in managing the disese. Assuming your blood work indicated virsus/bacterial infections, etc., are you treating yourself in trying to complete the die-off phase. Of course, you may not have had any infections to deal with or at least a minimun as opposed to myself and severl others on this Message Board.

    I'm staying positive and determined to get through the entire process since I have 4 infections, Epstein Barr Virus, Microplasmas, Babesosia (tick bite), CMV Bacteria, plus high probability of Chronic Lyme. I'm learning from other Posting, more infections in our blood the harder the treatment and herxing process...........

    Sorry you got 4 months into the protocol and just couldn't continue on from side effects and continue to work under those circumstances. As for me, I haven't worked in 2 1/5 months. We own business' and I'm having to shift duties to my husband and to office management.

    Plese let me know how you are doing and what the side effects were going on with you that were so bad you had to quit the protocol. I'm assuming they are similar to mine, but would be interesting for us new to the progam to understnd more of others experiences/feelings.

    Pray you are doing well and have an end result of full recovery.

    God Bless You,
  4. Sandyz

    Sandyz New Member

    I`m not the Sandy that you are looking for but wanted to answer your post. I too had such a hard time herxing, I did`t think I could get through it. I stuck it out and am glad I did as I feel so much better now.

    I`m going to repeat the advice I got. Slow down the herx if your body can`t take it. Talk to your doctor first but take a lower dose of some of this for awhile. I did it for a week or two and then could go up to regular dose without it being so unstandable. ALso aspirin really helped me. I think it thins the blood so it helps your body get rid of it easier. You`d have to talk to your doctor about that too. Another thing you could do is take a ginger bath. That helps to detox.

    Make sure you read the posts on herxing here, they have a lot of helpful things to get through it.
  5. pumpkinpatch

    pumpkinpatch New Member

    I totally agree with Sandy take it slower!
    I started full tilt with the 4 doxy and 2 biaxin per day and within days it hit me like a ton of bricks. No energy, nauseated, slow brain, increased pain, etc.

    The FFC Dr. told me that if I'm feeling that bad I will get depressed and will get too discouraged. I cut my dose in 1/2 and now in the last month almost at the full dose and tolerating it much better.

    So that took over 3 months. Mention it to the doctor, some people take an allergic reaction to a med so you have to think of that as well.


    <br>[<i>This Message was Edited on 11/12/2005</i>]
  6. karatelady52

    karatelady52 New Member

    Oh yeah, I'm still herxing. I didn't go to karate this morning but worked out at home --- at my own pace -- slower.

    I've only been doing 1/2 my abx and yesterday I upped it to 3/4 (I'm such a weenie). Today I'm nauseated like crazy. But that's good because it means the meds are working! That's how I have to look at it.

    It helps to pulse them. I'm taking mine 10 days on and 5 days off. Sometimes I'll go over the 10 days if I'm doing ok but after awhile, I feel like I need a break. Then when I start back, it doesn't seem to be as bad.

    Do ask Dr. B. She may want you to pulse also. The weakness and nausea and pain are all what I've experienced with herxing.

    Do you have the Burbur to help with herxing? It helps some.

  7. Mikie

    Mikie Moderator

    Talk to your doc. I think this was discussed here not long ago. In the beginning, the initial immune response and Herxing can be too severe for the body to handle. In some cases, I think the FFC's are a bit too aggressive. Being aggressive is good to a point, but if the treatment causes anyone to abandon it, all is wasted.

    There is no need to go to extremes of either abandoning the treatment altogether or Herxing all the time. There is a lot of room in between. Slowing things down means it will take a little longer but that's better than being so sick you can't handle it.

    Discuss this with your doc before trying to do things on your own. Good luck.

    Love, Mikie
  8. acesk

    acesk New Member

    I met a great doctor that is into improving the immune system. Building up my thyroid and adrenals and supplements. Fibro Malic (magnesium and malic acid) and sour cherry pills help the pain. Condrodin and Glucosamine for my joints with Omega oils from Pro Health here on the board.

    Also, I found a great pain clinic and I go to their neurologist and their psychologist. Neuro has me on Ultracet when needed and Effexor (which I'm weaning off of - doesn't help pain and I'm not depressed when I don't have pain! - see another post about my weaning woes!) and Neurotin which I just started this week. Also, I have sleep meds (Ambien) when my 3mg of Melatonin doesn't work (which isn't too often!)

    Now that I'm feeling better the last month, I'm starting up with yoga, which always helps my pain. I also get a weekly massage - we have these new clinics in Florida called "Massage Envy" and they are more reasonably priced.

    I just didn't feel well on the supplements and meds (except the thyroid compounded med which gave me some energy) from the FCC. My new local doctor says that it isn't necessary to fight the infections - they will always come out under stress if your immune system is poor - it is more important to build up your immune system. Vits like C, B12 shots weekly, Collostrum for joints and bioidentical hormones and compounded thyroid. Similiar to FCC but none of the antivirals or antibiotics. She and I agree that they were making me sicker. She doesn't recommend them except for lyme patients when they are first diagnosed.

    Hope this helped. If not, write back!
    Sue in Florida
  9. tansy

    tansy New Member

    herx too hard for too long and in the end it proved counterproductive. In my case I was using samento. I stopped taking the samento and concentrated on excreting the toxins from the die off, and then started again on a very low dose; my aim was to avoid physically overwhelming herxes, so far I’ve been able to achieve that and make progress. This means I am now on a much higher dose of samento, the more I can tolerate the better it seems to work for me, and though I still herx it’s been at a level my body is better able to deal with.

    Based on my experiences over stressing already exhausted systems can end up making matters worse. I made changes to my protocol, mostly self Rx, this proved to be just as important as treating the infections.

    The burbur may well help, there’s been some positive feedback elsewhere especially with regard to it easing the severity of herxes.

    Good luck.

    Love, Tansy
  10. hopeful4

    hopeful4 New Member

    You are really going through it! I hope that some of the suggestions here will be helpful to you.

    I go to the Seattle FFC and was just diagnosed this week with Lyme, so I'll be joining you real soon! I'm feeling very anxious about the treatment because I am very worn down and because I went through 3 very difficult months on flucanazole treating candida (which I still have).

    So I am going to print what people here have suggested for you, and talk to my Dr. about keeping the pace of treatment realistic for me. I see her on Monday for details on my labs and treatment plan.

    Please let us know if you try some of the suggestions people have posted, and if you are feeling better. Wishing you a much better day!

    Take care,
    <br>[<i>This Message was Edited on 11/12/2005</i>]
  11. karatelady52

    karatelady52 New Member

    I've learned tons of information and had a lot of support on Lymenet dot org.

    For your candida, the best probiotic (someone on here told me) is Primal Defense by Garden of Life. I didn't use much of the Jarro-Dolphilus I bought at the FFC. It wasn't as strong. I take 6 a day and it really helps.

    One of the things everyone stresses about lyme is that it takes awhile to get through it and the first 3 or 4 months are rough but well worth it when you begin to come out on the other side.

  12. KimDC

    KimDC New Member

    I'm fairly new to this board and am so relieved to see that others have chronic infections with reactivations. I'm dying for treatment information and options. What is Herxing? My CMV Igm titer and Mycoplasma Igm titer are both sky high. I tried Doxycycline orally for the Mycoplasma, but had such a violent reaction that I vomited for 3 days and ended up in the hospital for another 3 days. My primary is not willing to prescribe an IV antibiotic. I've been referred to an Infectious Disease Dr., but who knows when I'll actually see him. This is my worst relapse by far (2 months in bed). Any info is appreciated!
  13. ldbgcoleman

    ldbgcoleman New Member

    I will echo what everyone else said. I am thinking about you and hoping you are better soon! Your friend! Lynn
  14. hopeful4

    hopeful4 New Member

    Thanks for the tip on the website. I also was given a website and phone number for Lyme in my state from the FFC. I contacted the facilitator, and she was so helpful and supportive.

    About the Primal Defense probiotic, do you know why it's better than the Jarrowdophilus?

    How is your treatment going for the Lyme? How long have you been on it now? Do you also have co-infections? neurotoxins? I'm feeling very anxious (OK, I'm pretty scared) about the herxing, but I'm trying very hard to visualize myself on the other side of it, with glowing health and energy.

    Wishing you good health!

  15. bpmwriter

    bpmwriter New Member

    i quit the ffc protocol after about 3 months due to feeling like i was plummeting into a dark cave with no rope. ok, i'm being dramatic here, but i had the same symptoms and they lasted for weeks. it was hard for me to understand since i always thought herxing was a "couple days thing" followed by diarrhea at which time you felt better. but i didn't have that. just a worsening of all symptoms for weeks with no diarrhea elimination. like my immune system was stuck in overdrive.

    dr. b may suggest the questran protocol. that's what was suggested to me, the idea being that the toxics are backing up and you need a good flush. i did follow orders and do the questran detox, but i also took myself off the immune stimulators (acyclovir, transfer factor). like you, i needed some relief!

  16. karatelady52

    karatelady52 New Member

    Someone on here told me about the Primal Defense --- the bottle says:

    Primal Defense is a whole food probiotic blend utilizing 12 species of probiotics and Homeostatic Soil Organisms (HSOs).

    In years past, I couldn't even do a simple round of abx because of my stomach. Now, here I am taking double abx for an extended period of time! This stuff works!

    I take 4 - 6 caplets a day. It says to take 1-3 X a day. It sure works for me! I take it with meals and inbetween meals.

    My treatment is going as well as to be expected. I'm almost up to full dose of Zithromax/Ceftin abx. I had to cut it in half because I was herxing so badly.

    I tested negative for Ehrlichia and Babesia and wasn't tested for Bartonella but from what I read on the lyme board, most LLMD's treat for them anyway because many times they don't show up on the tests. I really need to ask my doctor about this.

    I have 3 viruses, EBV, CMV, and Claumydia-Pneumonia.

    I'm taking the abx, Heparin shots, Samento (up to 5 drops a day), Cumanda (5 drops) and Artemisinin.

    I wouldn't worry about the herxing (it isn't good for us to be scared ;-}). Just know that if it gets bad, you can always cut back a day or two (or more) and then pulse back up.

    I asked that very question on lymenet and many wrote me and said they pulsed their meds (10 days on, 5 days off for example), plus they backed off when herxing was bad and it didn't hurt them at all.

    I really believe we can fight this battle and win. I'm going to go to alternative methods after a year or so on the abx (if that long-yuck) like the Rife machine (look it up on lymenet) and then there are the TF's, homeopathic remedies I've read about, Far-Infrared Sauna, Hyperbaric Oxygen. I will probably do the Rife and TF's.

    Keep up the good work,


  17. Manwithfibro

    Manwithfibro New Member

    I am going thru the Questran protocol for neurotoxins and dying. The Herx is miserable.&lt;BR&gt;
    Hoping to hear some positive stories. Thanks TC
  18. herbqueen

    herbqueen New Member

    I'm so envious of you all that have normal herx's-&lt;BR&gt;
    My fibro progressed to neuro disease (likely chronic lyme =positive igenex). My herx from just a few drugs and herb tea in December greatly accelerated my MS like disease- I went from functional to now numb all over, weak, balance, gait, coordination, total inomsina, jerking twiching , nerve pain in brain eye pain (now on gaba pentin for that)etc---&lt;BR&gt;
    so so sick and scared-went from brain fog and some neuro symptoms/declining but function, driving, taking care of my family- do in agony in 4 months.&lt;BR&gt;
    Why could I just not have a normal herx (ie flu symptoms) get better?&lt;BR&gt;
    Still terrifed of next steps (seeing big name LLMD next week).
  19. Manwithfibro

    Manwithfibro New Member

    I have not gotten better. Still in Herx stage. This is scaring me. I have cut back on the Questran to 1x a day. Anyone with any words of advice? Thanks

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