Can Not Take Antibiotics What To Do?

Discussion in 'Lyme Disease Archives' started by greatgran, Dec 22, 2009.

  1. greatgran

    greatgran Member

    I am not sure what is going on with me. First Dx with fibro then cfs but I fit the symptoms of lyme. I tried to ignore these symptoms because I am allergic to many antibiotics but until I started having bad reactions the antibiotics was the only medicine that made me feel better.

    Since I have stopped the antibiotics due to bad reactions I am becoming much worse.

    Any other treatment for Lyme Disease? I am making an appointment with my doc to discuss this but can't get in for a few weeks. He did the lyme test of course it was negative but this is something I am going to push . The only thing is there a treatment other than antibiotics?

    Thanks and God bless,
    gg
  2. Nanie46

    Nanie46 Moderator

    Hi,

    I am glad to see that you have posted here. I just answered your recent post on the CFS/FMS board.

    Some people use natural protocols. There is debate as to how effective those are. Others like to debate how effective antibiotic therapy is.

    I have not tried natural protocols like Cowden or Zhang, nor have I studied them enough to help you there.

    You can find info on them at lymenet.org...click on flash discussion....sign up for free....click on Medical Questions board.....post your questions and also search old posts for info on natural treatments.

    There are many posts there about natural protocols and people's experiences with them.

    My LLMD says that antibiotics are necessary for recovery. I am sure there are others who will dispute that.

    Did you have reactions to antibiotics such as hives or an anaphylactic reaction such as constriction of your airway that threatened your life?

    If your reactions were not true allergic reactions, but were side effects like diarrhea,etc then those issues can be dealt with....for instance...

    Were you taking high quality refrigerated probiotics when you were on antibiotics?

    I really urge you to try to get to a Lyme literate MD. You can find one on lymenet.org's Seeking a Doctor board or through the Lymediseaseassociation.org or your local lyme disease support group.

    Your Dr likely knows nothing about how to recognize, diagnose or treat chronic lyme.

    You can direct him to these sites if you want....and hope that he reads them...


    http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf


    http://www.ilads.org/lyme_disease/about_lyme.html


    I sure hope you get the help that you need.
  3. greatgran

    greatgran Member

    for your info. I have had all the reactions you mentioned to antibiotics. The Biaxan, was the worst. I began to feel dizzy, my heart racing and felt I couldn't breath. I made it to bed and thought I was dying I couldn't even call for help after about 4 hrs I was able to get to the bathroom. So the doc is afraid of trying any antibiotics related to Biaxin. The PCN was the rash and welks, the others was sever nausea, dizziness. My doc doesn't have a clue what to give me. Tried Keflex the nausea /dizziness . I was doing well on antibiotics then all of a sudden seems all I tried reacted. Some within 12 hrs others about the 3rd day.

    My dentist a few years ago gave me Clydamycin (spelling) which I only had to take for 4 days and at that time don't remember any reaction.

    I feel so hopeless now I just want to know for sure what I have then have help dealing with it.

    I brought the sights up on the net and found a doc that is about 4 hrs from where I live so going to try to get in and talk with my doc and take it from there.

    Thanks again and God bless,
    gg
  4. Nanie46

    Nanie46 Moderator

    Hi,

    I am not a Dr but some of the symptoms you expereinced when taking antibiotics could have been because you were herxing.

    Your lyme symptoms could have severly worsened due to the die off of bacteria.

    I have read of many people on lymenet.org experiencing severe symptoms while herxing.

    Of course it would take an experienced lyme literate MD who follows ILADS guidelines to carefully evaluate and determine how to treat you.

    I am not doubting in any way that your symptoms were scary and significant.

    Hives would indicate an allergic reaction.

    I have to wonder though if some of your symptoms were from a herx.

    It usually takes awhile to get an appt with a LLMD, so call as soon as you can.

    You may want to post on lymenet.org's Medical Questions board asking for "Feedback on Dr C in MO" (only insert the initial of the last name of the Dr you are considering and his state.)

    I applaud you for following your instincts. You may have found an answer.

  5. victoria

    victoria New Member

    I'm glad you found a doctor, I hope s/he can help you.

    the alternative protocols seem to have as much problem as the abx protocols.... not everybody can tolerate them. Under my 'sticky' at the top there are a lot of alternative sites.

    Did your prior LLMD have you pulsing the abx before? This might make the difference if you try a different abx... or maybe even one that you've tried. When my son was taking them, he took them every other day - 3 days/week M-W-F with none on weekends. Every 4th week he took none to allow his immune system some time to 'recover'. Every so often he was told to take a month off completely. I've heard that more doctors are adopting this approach. Also he used flagyl along with the abx.

    Sadly tho, not everyone completely recovers... my son still hasn't, stopped the abx after 3.5 years as it seemed he'd improved as much as he could, he is on disability, is 22 now. He is trying some alternatives however and can still herx. He has found supplements to be a huge benefit as "Lyme and friends" seem to eat up a lot of the nutrients our bodies need, including magnesium & selenium for the heart. He realized a few years ago he had to participate in his healing, and has become a real 'health nut' thankfully - no sugar, maybe a beer 1-2X/year, no yeat/mold foods as he's realized he's become sensitive to them (candida), and so forth. He's done a complete 180 degree turn around in other words!

    I am really interested in seeing how many lymies turn out positive for this XMRV retrovirus... I am betting there are viruses, and now maybe this retrovirus, to consider during treatment.

    It never seems to get easier, does it?!

    All the best to you,
    Victoria



  6. Renae610

    Renae610 New Member

    Hi. My daughter is drug-resistant, so I've had to go the total natural route. I continue to learn alot. Feel free to contact me.
  7. victoria

    victoria New Member

    what herbs are you using, if you don't mind sharing here?

  8. Renae610

    Renae610 New Member

    stopped all herbs and supplements recently because she hit a wall of no more progress.
    Found out that 3 years ago another doctor committed malpractice so her TMJ and ANS (autonomic nervous system) were not fixed. This could be the MAIN weakness (structural & chemistry) preventing progress for her and others! She is being referred to OSB (oral systemic balancing) expert Dr. F.R in Tacoma who has produced dramatic results for some patients with CFS, FM, Lyme, sleep disorders, etc. Here's a brief education about OSB: http://montgomerydentalmedicine.com/osbdefine.html#location. If you have those "signs" of needing OSB, call the Tacoma OSB office.

    GG, after 10 years, I find that Dr. J at www.hansacenter.com is the best one to test and identify what herbs, supplements, therapies, and treatments you need to make progress. He created the most advanced level of energetic testing called BRS and it is amazing! My daughter made very little progress before we went to him. Get his books. They prefer that new patients come for 2 weeks initially if you are coming from a distance. But go a few days or a week if that is more affordable. It will get you started in the right direction. Don't waste time and money experimenting with different protocals! If you are hypersensitive, that can mean you have ANS trouble like my daughter has? Dr. J can help that but my daughter's case requires OSB. I wish I had found Dr. J a long time ago. By the way, he created his own formulas that are natural so you don't have to take standard antibiotics. There's also a product to get rid of ammonia --that is vitally important! Best wishes for your recovery!




    [This Message was Edited on 12/28/2009]
  9. herbqueen

    herbqueen New Member


    Yes- the whole abx/herx dilemma is confusing and scary. I tried my first abx as part of fungal

    treatment ( Flagyl/Diflucan) and I've been in a downward spiral now for over a month and only

    on the flagyl for 7 days. I've gone from being functional and have some neuro symptoms to

    being nonfunctional ( thank god i'm on vacation right now). I'm not even sure I can continue

    to work and I work mostly from home! I see my Doctor on MOnday to discuss abx/lyme

    protocol and I wonder if my body can handle it and I'm so sick now since the flagyl/diflucan if

    I dare add anything into the mix or wait and see if I can recover back to baseline first. I

    don't mind intensity of existing symptoms but when new neuro symptoms emerge , that is

    REALLY scary and you wonder if you are causing more harm than good. I've had some

    numbness that has lasted that I've not had before. Gone from sleeping poorly to not sleeping

    and gone from occassional body jerking at night to jerking all night long-and during the day. Sick , dizzy, weak feeling , nervous system shaking, non functional now for almost 5 weeks .

    In my case I had a similar reaction 2.5 years ago when on Zhang's chinese protocol and was

    starting to ramp up add buhner herbs into the mix. I had also vacationed at a house that

    seemed moldy the week before and on an heavily tick infested island (shelter island).. so not

    sure if that contributed or was a variable. I do think it was the herbs. All hell broke loose on

    neuro symptoms with new intense symptoms emerging . I stopped everything , went on LDN,

    and it took me almost 4-5 months to recover and I'm not sure I ever got back to baseline.

    Is this herxing? I"m not sure.. can herxing set you back so far and cause new, scary neuro

    symptoms to emerge that you never had before? (I had trouble controlling my speaking voice,

    typing I was uncoordinated, and shaky, shaky all over, intense brain fog , no sense of spatial

    when wallking and reaching for things, brain fog to point of illness, felt weak in knees, muscles

    began twitching all the time (never had the before the herbal explosion-and that never really

    stopped), thumbs twitching continuously, balance issues muscle jerking at night etc etc.

    I've read that some have problems with methylation/detox cycle and you can test for that. I

    know I have chemical sensitivities and I wonder if I and others fall into that category? I don't

    think my doctor knows about that or knows how to test for it.

    Now for alternatives:

    Zhang chinese herbs- expensive- I took for 7/8 months until neuro explosion and not sure it did anything for me including 3 months of artemisin.

    Buhner herbs- "Healing Lyme " book- Try this protocol-but ramp us slowly /1 herb at a time and see what you can tolerate.....after explosion 2.5 years ago...9 months later I slow added back a few of his herbs including cat's claw and thought I was getting better until this fall. Now the abx has set me way back. Many people seem to benefit from this protocol. He has lots of Q&A's on planet thrive and yahoo message board that used to be very active, but is not so active these days.

    Misty Meadows Herbs Lyme products- based on buhners herbs and then some. Google to find her presentation from conference a year ago. Her protocol is still very new.

    Cowden Nutramedix? protocol- TOA free cat's claw/Samento etc. Complex protocol and is expensive i hear to buy all the products--Some people also claim to get powerful herxing on samento so go slowly/find a naturopath who uses the protocol.

    High Salt/C ? _ some claims it works and naturopaths are prescribing it. I have a friend who is on it right now.

    Raintree Herbs- "spiro" and also "Myco" and other herb tincture combinations. They also sell the cat's claw buhner recommends. Like everything else probably need to take it very slowly.

    Klinghard'ts protocol- google- on mercola's site. Seems very complex and difficult to follow!

    Jernigan's clinic/hansa center and supplements- very expensive- I know that renae is having good luck but I can't find alot of testimonials out on the internet. I did order his neuro detox- not sure if it is helping. He focus's on detox, detox, detox, and his supplement line. He also has a book.

    Then there are all the "machines"....RIFE machines, BIO880, etc. etc.-not sure if these work. some people claim they do and combine with herbs.

    LDN- Low Dose Naltrexone. I took this for 1 year after nervous system explosion.. I did get better in hindsight but though I was just recovering from flare and also was doing intense candida diet and meditation (ashok gupta's amygdala retraining). I went off of it after 1 year since I thought it wasnt doing anything. I may go back on it. You can can combine with herbal and abx protocols. There are many post lyme people on the yahoo message board now taking LDN and some claim it has helped. LDN is being used to treat autoimmune disease-- MS, Crohns (see study by penn state). One doctor I know is combining this with SCD (specific carbohydrate diet-originally developed for celiac-see "breaking the viscious cycle" book on amazon) to treat immune issues. I wonder if the combo would be beneficial with lyme since I was doing the best since my neuro issues began on a low grain/candida diet with the LDN and meditation. LDN did seem to make my periods get heavier and cramping more intense- I also had an abnormal pap/uterine polyp while on it. Not sure if that was coincidental or not. Some others on message board also complain of heavier periods. One doc is using it to treat infertility in Ireland, so must have some hormonal impact.

    Moducare Sterinol- immune balancer- I took this for years and seemed to help me. Wonder if I should go back on it? I can't seem to find alot of other testimonials or lyme info regarding it.

    That's all in my head for now! There are probably are other treatments, but I think those are the main ones.

    I wish there was published scientific data on what works and what doesn't, and issue of abx tolerance/herxing, and lasting benefits of long term abx treatment?

    I meet with my doctor (not a llmd) and he is still relatively new to the lyme abx protocols--so I'm not sure he will have alot of answers for me. I too am caught in the dilemma of are these abx ( and even herbal protocols) helping or given the flagyl experience and how sick I am right now if I can even tolerate them? If I knew I would get better I would put my self through continued hell and new symptoms--but there seem to be no guarantees with lyme and lyme treatment. I also wonder if like l others with CFS/FMS- we are carrying alot of opportune infections and Lyme/coinfections are just one piece of the puzzle. LLMD's only focus on Lyme and coinfections. I think the answer probably is a combination of abx (if you can tolerate them) and herbs and other things to get one better (diet, exercise, meditation) etc. etc.

    I have a colleague who had lyme disease when he was younger for 7 years ( he pulled out tick and was treated right away for lyme ( 4 weeks abx and IV abx in the early 90's). He claimed what finally healed him was reiki believe it or not! He saw a chiro who had him on a ton of herbs and did reiki and he said it was the reiki that finally healed him after 7 years of suffering!
  10. Renae610

    Renae610 New Member

    I'm sorry you're feeling worse herbqueen. ((hugs))

    Dr. J. says herxing is a sign of a poor treatment plan. Patients have been told that it simply means you are killing off organisms, but NO, it also means your body is overwhelmed. Herxing can cause damage and even death, he says-- this is why --don't experiment with protocals! Get him to test your body to find what products, treatments and therapies are presently compatible with your body!! BRS reveals what order your body needs certain things to heal too. Yes, there is an ORDER that you can't know without being energetically tested.
  11. MIssAutumn

    MIssAutumn New Member

    I have to add to Renae's comment on herxing. I was also told that herxing was a sign that the treatment was working. What it meant was my body was overwhelmed and my liver could not detox quick enough and I have now gotten worse! I did a Genomic Liver test and found out I was missing at least one of the sets of enzymes needed to detox in stage one and two. So now I have to try and strengthen the liver and work with what is there. So herxing is NOT a good thing.
    Sarah
    [This Message was Edited on 01/13/2010]
  12. herbqueen

    herbqueen New Member

    My doc is testing my liver ability to detox. I've been in a downward sprial 2X now with major degen neuro symptoms emerging both times.

    My "herx" first time lasted 4 months-with new and lasting symptoms.
    My first abx experience. I am now 6 weeks since stopping abx and still not functional-scary new neuro symptoms (ie. swallowing difficult, talking, numbness, coordination, shaky , jerking . total insomnia etc etc etc).

    Did you have an experience such as this from our herx? Did it leave new and lasting symptoms? I have lyme folks telling me you will fill like you are dieing but you will get better if you stick with the abx there is no other option.

    Just curious on your herx experience and what options you are pursuing now.