What To Do, Can't Take Antibiotics

Discussion in 'Lyme Disease Archives' started by greatgran, Nov 28, 2010.

  1. greatgran

    greatgran Member

    Well, I seem to be highly allergic to all the antibiotics I have tried.. So what do I do now? The doc says that is the only way and he is clueless. Waiting on advice from another doctor.

    I feel hopeless.. Just when I thought I had hope.

    Oh, I never realized how this lyme can effect the brain, now I know why the crying, depression etc.. What to do??

  2. victoria

    victoria New Member

    Wow, GG, I'm sorry about the allergies, I know you've gone thru so much.... has that included the one he just gave you? Often there are alternatives. This is one thing that may differ re: advice, according to which doctor you see.

    I don't know if the herbal approach would be a good one if you have problems with the abx, tho there are many who have used them (Buhner's and Cowden's). There is also the Rife approach. And the Salt/C.... those are the ones I've kept on the back-burner so to speak. There are others listed up above in the sticky. And don't forget basic good diet routines like green smoothies etc.

    Honestly, many have ended up using more than one approach, so there will probably be something you can try. The abx route doesn't work for all OR only lets them get so far in treatment.

  3. kat0465

    kat0465 New Member

    Don't know much about what kind of ABX is used in Lyme. but Maybe they have some iv abx you haven't tried yet???
    what all have you tried so far??

    I hate to hear that,but don't give up yet. i know theres a few protocols out there that use herbs and supps to fight lyme.
    go to Lymenet and see what natural stuff people are using.i hope they can find something you can tolerate, your so close to feeling better!!

    Love, Kat
  4. Nanie46

    Nanie46 Moderator

    Hi gg,

    I'm sorry that you are feeling hopeless.

    There is always hope!!

    There is sooo much information on lymenet.org.'s Medical Questions board. You can use the search feature or post questions.

    If you have trouble navigating the site, let me know and I will help you.

    Perhaps you could try Cat's claw or TOA free Cat's claw. I take Nutricology's Prima Una de Gato liquid, which is TOA free Cat's Claw.

    Some people say they were only helped by regular Cat's Claw, others by TOA free.

    Are you certain that the symptoms you experienced were anaphylactic in nature and not worsening of lyme symptoms?

    There are alternative methods to explore as the others said.

    Never, never, never give up!

    Diet can help alot too....gluten free, corn free, dairy free, sugar free, soy free....all allergen free.

    Add in the recommended supplements.

    If you do not exercise at all, try starting with gentle stretching everyday.

    You must always have hope.....


    Big, big hugs!!!
  5. greatgran

    greatgran Member

    The doctor's office called and I actually talked to the doc.. She wants me to try Doxy..sp..and will start me out on a small dose and work up. She said to work with her and I can call everyday if needed. She says this must be treated ..but I have been reading where with chronic lyme its almost impossible to get well. I have tried lymenet but do have problems navigating .

    Did you have IV antibiotics or just oral? I feel I have to choice but to try..

    Thanks for all your help.. Sure wish I could have been dx several years ago.. Where you dx in the early or late stage? I am sure you have told me all this but I can't remember.. Since I am having a lot of crying spells she wants me to try a small dose of zoloft..

    I have been so sick I don't exercise , just what little housework I can do.. I am becoming housebound and disabled.. Hope it isn't to late..

  6. Nanie46

    Nanie46 Moderator


    I was diagnosed after 21 years and only because of my own research.

    I take only oral antibiotics. Ask your Dr if you can take plaquenil with the doxy. That is what I take right now.

    I take doxy 200 mg twice daily and plaquenil 200 mg twice daily.

    Many people do have to start with lower doses of antibiotics so they don't herx so hard.

    About doxy: My LLMD says he sees the most gains made by his patients on doxy.....good news.

    You MUST take it in the middle of a BIG MEAL. It is notorious for causing nausea and sometimes vomiting.

    You MUST BURY the doxy in a big pile of food in your stomach EVERYTIME you take it.

    You MUST have your high quality probiotics when you start your antibiotics.

    I was told to take as many probiotics as I wanted...can't have too many.

    Take your probiotics at least 2 hours away from any antibiotics. I take my probiotics at night before bed so they can work all night.

    I take my antibiotics at breakfast and supper.

    You can expect to feel worse before feeling better. This is normal due to die off of bacteria.

    Do like your Dr asked and work with her. If the herx symptoms get too bad, she will probably have you back off a little.

    It's ok to treat the symptoms to make yourself feel better...like zoloft, etc.

    Nothing happens quickly with lyme treatment. Improvement comes slowly.

    My LLMD told me this and it is sooooo true: It is about quality of life!!

    If you can get mostly better and enjoy your life alot more than it is absolutely worth it, right?

    It doesn't matter if we can't get 100% better. You want to get to the point where you can function and enjoy everyday, and just feel alot better, and yes, this is possible!!

    Many others on lymenet.org have been where you are and worse. I have seen distraught and suicidal people make much improvement and post about how grateful they are for sticking with it.

    About lymenet.org......try this: Go to lymenet.org...........then click on "flash discussion" on the left side of the page.

    If you have already signed up, just click on "Medical Questions".

    (If you have not signed up yet, you need to register as a new member.)

    When the Medical Questions board comes up, save it to your favorites list so you can find it with one click.

    You can start reading posts to get the hang of the board.

    At the bottom right side of the board is a drop down menu that you can use to go to one of the other lymenet boards, such as "General Support". This is where we post about things that are not medical questions.

    There are so many very knowledgable and supportive people on lymenet and the board moves fast, so it doesn't take long to get answers.

    Try it and come back if you have any problems.

    If you are reading someones post and you want to send them a private message, you click on the little icon that looks like 2 people with an envelope which is located next to the date and time of the post.

    If you created a new post or replied to someone's post and you want to edit it, you just click on the little icon that looks like a paper and pencil, also located next to the date and time at the top of the post.

    It took me a little while to get used to a new format, but I'm glad I did.

    And don't worry, my memory isn't so great either, so keep asking questions.

    Matthew 11:28 (NIV)

    28 “Come to me, all you who are weary and burdened, and I will give you rest.

  7. greatgran

    greatgran Member

    Thanks Nanie for all your help and info.. If it hadn't been for you telling me to get ck for lyme I probably wouldn't know what was wrong with me..

    How bad did you get before you were dx? I am to the point of being almost disabled, housebound and stay in bed a lot. So I can take the meds hoping no med reaction or keep getting worse and this disease can be fatal.

    Once again I know you have told me but how long have you been on doxy and how much have you improved? Over what time period..

    I went to lyme net and slowly learning how to navigate ...Oh, what probiotic do you use?

    Thanks again,

  8. Nanie46

    Nanie46 Moderator


    You're welcome gg!

    I had FM for 21 years when I suddenly developed horrible excrutiating neck, head and shoulder pain and stiffness in Feb 2008 while trying Ambien CR for terrible insomnia.

    This pain was very debilitating. It felt like a 4 inch drill bit was drilling through the base of my skull and coming out my mouth 24/7. It was continuous and I thought I might die.

    It also felt like I had 3 vice grips squeezing my head, neck and shoulders.

    I spent alot of time in bed during that time. I could still walk and go out of the house, but the pain was soooo bad.

    It was then that I understood why people with terrible chronic pain commit suicide, even though I would never do that.

    I have gotten better so far, over 21 months.

    My insomnia and fatigue are sooooo much better...probably 90%.

    My pain is probably 65% better at this point.

    I have taken doxy 3 different times, including right now. I took other meds also.

    I use "Ultimate Flora Critical Care" probiotics with 50 Billion cultures.

    I used to take 4 every night. I recently reduced to 2 per night and I am doing fine with no signs of yeast.

    I'm glad you went to lymenet and are learning how to use it. It takes a little time but once you get the hang of it, you will be fine.

    I wish you a hopeful day.
  9. Nanie46

    Nanie46 Moderator

    Hi gg,

    I forgot to tell you that on lymenet.org my screen name is dekrator48.
  10. greatgran

    greatgran Member

    Thanks Nanie, my main symptoms isn't pain even though I do have body aches.. Mine is more in my head like a sinus infection and craziness ... The horrible anxiety/depression and of course the fatigue. Its just my head feels weird a lot of times and I am so emotional there are times I cry so and feel like its the end of the world for no reason..

    Of course I have read about all the side effects of doxy so we shall see. I was taking Clindamycin
    but the doc thinks the doxy will do better.. What type of side effects did you have from doxy?

    Thanks again for putting up with me. I will admit I am a basket case..

  11. Nanie46

    Nanie46 Moderator

    Hi gg,

    Alot of people on lymenet post about your same symptoms...alot of anxiety and depression, sinus problems and fatigue.

    I have read alot of posts about people feeling out of control with their emotions and crying alot....so you are definitely not alone.

    They got better with treatment.

    The only side effect I had with doxy was nausea. I still took it every day though. I knew I had to in order to get better. Now I don't get any nausea unless I don't eat enough with it.

    My herx with doxy was mainly a 2 week long flu-like fatigue.

    Are you going to try the zoloft?

    I hope to see you on lymenet!
  12. greatgran

    greatgran Member

    I feel I am going to drive you crazy..but I have been reading a lot on lymenet. First of all I don't have a LLMD just my regular doc. Since they didn't mention herxing, follow up blood work,he seems knowledgeable but what to do.. Guess try to make an appointment and go talk to he and she.. She is the PA .. I will try the doxy till then but its only a 100 mg twice a day for 3 months.

    As far as the zoloft I think I am going to hold off on it till I see how the abx does. Then I may call my naturalpath.. I will calm down when I can process all this..

    Thank you again I will try not to bother you anymore..
  13. Nanie46

    Nanie46 Moderator

    You are not bothering me at all, really!!!!

    It's ok to start with the low dose of doxy. You have to start somewhere.

    I know it is overwhelming, but you are right, you will be calmer when you have time to read and learn and process it all.

    Just take it one day at a time...that's all you can do. But now, you have HOPE!!!!!
  14. gypsysoul

    gypsysoul New Member

    Who is your Good Doctor? Mine says I will never get disability. I have been diagnosed with Lyme disease. Galax hospital. I am in the same boat as you.
  15. greatgran

    greatgran Member

    Would love to talk with you .. can you meet me on chat for a private chat and I will tell you all I can.. Not sure what the rules are about names etc... Are you from Galax?
  16. greatgran

    greatgran Member

    I have been on lymenet, I go by phyl6648... how are you doing? I had my pity party now its time to get on with something and stop this crying and feeling so fatigue. I have so many unanswered questions I am making an appt. and going to talk to the doc and see if we are on the same page.. lol...

    Guess I have read too much but I read somewhere that if you been on an antibiotic, which I had been for a sinus infection this could give you a false positive lyme.. who knows.. I do know after reading on lymenet the meds or dose that I was given is to low or will a lose dose be better than none.. Just got a few red flags so going to talk to the doc and see if he can refer me to a LLMD..
    If I still see red flags.. Gee, I am not making any sense...

    Hope you are having a great day...
  17. Nanie46

    Nanie46 Moderator


    I'm glad you are ready to move forward now!!

    I am doing well. I am going to be away from the board from 12/3-12/6. Then I'll be back.

    Keep going to lymenet...lots of people will help. I am Dekrator48 on lymenet. I saw that you posted there! Yay!!!

    There will probably be alot your Dr does not really understand about lyme. For instance, what about evaluating you for the common coinfections that it sounds like you have?

    Don't worry about being on the antibiotic when tested. You have too many lyme symptoms and lyme specific bands.......you have lyme. False postives are very rare.

    You do not need a referral from your Dr for a LLMD. You have the list and you can call them yourself and make an appt. It can take months to get in, so do not delay any longer.

    Keep moving forward...it's the only way to get your life back!!!

  18. Nanie46

    Nanie46 Moderator


    Just wanted to say that you can find a LLMD by going to lymenet.org....click on flash discussion....sign up for free......click on the Seeking a Doctor Board.....and create a post asking for LLMD's in your state or nearby states.

    Lymenet is a great place with lots of helpful people and quick answers. Go to the Medical Questions board if you have not already been there. Read posts and post your own questions.

    Lots of help available there.

    Good luck!
  19. Renae610

    Renae610 New Member

    You definitely have HOPE, Greatgran!! My daughter also does not tolerate meds and even most supplements! Yet we are moving forward, getting improvements.

    Your body is intelligent and can strengthen and heal!!! Get ready to learn a lot on this journey!!! *smile* Alternative healthcare does work.

    Dr. J teaches that the average normal healthy person has more microbes than cells! So, contrary to popular notion, your goal is not simply to kill mircrobes and try to kill all of them.
    Rather assist, so that your body strengthens and starts managing it's microbial load again, better. Dr. J and many others use no drugs with Lyme patients.

    My daughter was diagnosed with several things by an LLMD, and I'm grateful for that, but the LLMD did not find everything. It took Energy Medicine to find more. The LLMD had a "protocal", and my daughter couldn't tolerate any of it. We had to find the way through Energy Medicine that works for my daughter, uniquely....

    Is your Naturopath trained in energy-work? Energy practitioners understand that one-size-fits-all "protocals" do not work for everybody, and you've got to treat the individual in the way and order that YOU need to heal.

    Energy practitioners use either muscle-testing, pulse-testing, machines (EDS, BioMeridian Biofeedback, SCIO Biofeedback, etc), or other methods like A.R.T. (autonomic response testing) or BRS (bioresonnance scanning), etc. They find what supplement, herb, flower essence, frequencies, therapy, or treatment is compatible with your body to restore you and kill organisms. They can also find what is hindering progress. For example, Dr. K found that my daughter didn't respond enough to YEARS of treatments because of scar tissue from a past surgery blocking energy flow and "trauma" stored in the tissues! There are a variety of alternative methods to release negative emotions and trauma from the body....

    Do some research to find alternative doctors who use ozone with Lyme. I strongly believe in this. You may have to travel beyond your state to get it, but I believe it is better than antibiotics and will save you alot of money in the long run. I'm hoping to take my daughter that route when we get her detoxifying better...

    My daughter caught a virus earlier this year and it caused a huge setback. But we have a good team of alternative professionals, assessing and building her back up and we're making progress! See if there is a practitioner in your area who does Colorpuncture-- I recommend it!

    Yes, there's hope for you!!! *smile*
  20. maps1

    maps1 Member

    I am so happy that you have a diagnosis but so sorry you have to go through this.

    I used to be on the CFS thread but have not been there for quite a while and I have been sick about as long as you, we have to thank god that people kept coming back to that thread to talk lyme even though they were kicked off the board, thanks to dekrators determined and gentle efforts many more people will stand a chance of getting better.

    I still see my cfs doctor and last week we were talking about how soon the test for xmrv would be ready as I am seriously thinking that it is playing a role in not getting better.

    I am around your age so I know what you mean about wanting a few good years. I have been treating for a little over a year starting off with oral antibiotics and then in March went to IV, the spring was amazing for me I was hauling around large bags of earth and fertilizer and planted my flowers for the first time in years, all summer the garden looked so beautiful, at least to me, unfortunately I have deteriorated over the summer.

    You may not be allergic to antibiotics you may be having severe herx, when you have had lyme for so long there is so much to kill, the vitamen C alone could be causing herxing.

    I finally had to stop both IV and orals, it is so confusing as to what supplements to take as there are so many, dekrator gave you a good list I would suggest just adding them slowly though.

    I was so dissapointed in my relapse that I found the funds and went to washington to se an LLMD, they have requested so many tests and some of them the doctors here will not even do but they gave me some gabapentin for the severe flank pain that never let up and lamictal for seizures, which they said were what were causing my fork lightening kind of pain, both have helped a lot and it was really comforting to finally have someone that had done it a thousand times before.

    I added all the supplements at once and had such severe symptoms/herx I had to stop and wait a week and then add one in at a time but it is still too much for me I am going to cut some of them back to just once a day, including my perscription medication I am taking 35 pills a day and I am not going to get all up tight about cutting some of them back as my body is just not ready for this, but is why I think feel that the right supplements are also killing lyme and in your case you may need to go very slow for the first couple of months.

    I am back to the night sweats and pain in places I never had before I am also suffering much more confusion than I had at the begginning but on the other hand my balance problems are gone and so are many of my other symptoms, which of course right now I can't remember what they were LOL, also important my fatigue has decreased by about 75% I am no longer couch bound but still not able to function normally.

    Like dekrator said about her son the washington LLMD said the same thing, they want me back on the IV as soon as possible which I have done and to also try to add in the azithro at 1000mg when I thought my body could take more. These were to be added on the same days as the iv which is monday/wednesday/friday and after 3 weeks to take a week off and do this for three months and then take a month off and restart and depending on the herx will give them some idea of where I am at while at the same time they also trying to stimulate the immune system into recognizing and attacking the borrelia.

    I really believe that I went way to fast, I was not taking the supplements so therefore I was not supporting my body.

    Even if all you can do for the next couple of months is to add the supplements you are already going to be starting the killing. I thought that when I got the lyme diagnosis that I would be better within a couple of months and was totally overwhelmed by all the information coming my way.

    My only suggestion is to sit back, relax, get lots of sleep while knowing that you will be killing these monsters one day at a time and realize that after all this time that tjey have been freely ravaging your body and that their are an awful lot of them.

    Don't stress out about not being able to take the antibiotics right now just try to get on the recommended supplements and read dr b's information. I would be happy to give you my list of supplements if you want but a lot of them are specifically aimed at neuro lyme.

    Keep letting us know how you are doing as after all these years I feel I know you personally.
    PS, sorry nannie46, keep thinking of you as dekrator and by the way greatgran when I went to see the canadian doctor he did an mri of my head and i had severe white matter disease - after a year i have had a second mri which shows no change which is very good.[This Message was Edited on 12/02/2010]