Please all update on Lyme treatment

Discussion in 'Lyme Disease Archives' started by grace54, May 27, 2007.

  1. grace54

    grace54 New Member

    Just wondering how we are all doing on our ABX's or catsclaw etc.and side effects.

    I started the Doxyclcline and it is not pleasant. It first makes me feel more depressed and weak and then I awoke in a terrible drenching sweat.So its doing something for sure. I hope its killing those little buggers:)

    I made a mistake of takeing it right before bed and I woke up drenched and could not get back to sleep even with my melatonin which always puts me down.

    Then one day I felt real good, my depression lifted and I felt hopeful and that I was on the right track. I stopped for the holiday weekend as I had places to go but plan to stay on it and use the catsclaw for a break . I wasn't even sure if I was going to have a bad reaction to it so I started with half of a 100mg, I'm supposed to take 2 a day but I havnt been able to yet. Like most meds I have to start slow.

    I hope you all are not having too much discomfort. I would hope I am reacting normally to this med so let me know how you are all reacting and the side effects and any improvement. Thanks :)
  2. mollystwin

    mollystwin New Member

    I've been on abx since February. First doxy, now zithro for the summer months. I still herx. I have one week a month where I am pretty much in bed for the entire week. The rest of the month I just feel crummy, but manage to work a day or two here or there.

    The thing with lyme is that you do feel worse before you feel better. And it's not a short treatment. My twin sis has been in treatment for about 16 months and she is finally having some pretty decent days. So you will get better, but it can take a long time.

    It helps me to try to remember during herx days, that it won't last forever. Depression and anxiety seem to go with the herxing, at least it did with my sis and I.

    I always start slow on meds too. Especially something like catsclaw. So I think you are doing the right thing there.

    Good luck to you.

  3. mollystwin

    mollystwin New Member

    I thought this post from a different lyme mesage board might give you some perspective with lyme treatment. This is someone else's experience with lyme who is now feeling better:

    The month of May is almost over.

    With Memorial day coming up I tried to think of what I did last Memorial Day. I couldn't remember. I don't think I did anything except lay in bed. It is so sad when I think that is probably what I did. I don't think I was with it at all. Lost in "herxville". Very sick.

    So today, I am taking the time to report back that indeed I do think you can get better Enigmagirl.

    And I don't think it is necessarily totally dependent on how long you have had the disease.

    There is big difference between saying "there is no cure" and "there is a cure we just don't know what it is yet". Of course there is a cure for everything, everything. We just have to find it.

    Or better yet, that there is a cure but it may be different for each individual.

    I started tetracycline 5/11/06. I herxed terrible the first day. I remember posting on this forum that I could barely make it home from work I had such intense brain fog.

    Today, as I sit here typing this ....I have no brain fog. I believe I am well.

    It is not an easy road. And everyone goes about it a different way. I assume some do not make it as they take the wrong course or a have other things going on or do things that affect their outcome.

    I tried to find the post I made that day about barely making it home (~5/12/2006) but I couldn't find the right key word to go back that far in the archives. Maybe someone knows how to do it better than me. I'd love to see that post again. I remember looking at a lake I passed and wondering if I should drive into it. I can't believe I thought that now. Wow.

    But I got well.

    I had huge stretches time where I did not think I ever would. I never have cried so much in my whole life as I did in the last year.

    I have my own opinions of what a person needs to do. Alot of it has to do with instincts and knowing what to do when.

    I have said that I have done the tetra, biaxin and plaquenil. A very basic regime that many doctors have their patients on. But, that said I listened to my body and did other things that I believe were done at the right time. I would try something, wait for a reaction or non-reaction and move on to another approach.

    That said I don't want to concentrate on what and when. I just want to say you can get well. It does happen. And I think it may be different for each individual.

    I think one of the most important things I did to get well was "listening to my instincts" and "timing". So that I knew what to do when. That is why I am a firm believer in avoiding as many other drugs as possible.

    I think you need antibiotics but at some point (and it is critical to know when that point is) you need to get off them. And that is as much as I am going to say about that for now.

    I don't want to get into debates about regimes or whatever.

    I just want you to know that you can get well. That it is possible.

    ~ 1 year after being extremely extremely ill when I had: Palpatations, nightmares, insomnia, brain fog, muscle aches, chest pain, numbness and tingling you name it. I couldn't sit in a car in the sun I was so ill. I couldn't walk 3 stairs without being out of breath. I lived in my bed when I was not at work. I don't even know how I made it through work. It was it all a blur. Pure will power I think. It stings to even remember.

    I am currently well.
  4. grace54

    grace54 New Member

    That is encouraging and we need that for sure. I can relate to her story and to the depths of depression and the terrible thoughts that cross our mind.

    It is a lot of suffering but it would be far worse without treatment and not knowing what to treat.

    I wonder if I should ask to change my ABX as I am outside as much as I can in the summer. You know the summers are short here and the sun is so nice to have again after the long winter.

    Hope we all get better ASAP.:)
  5. hopeful4

    hopeful4 New Member

    There is always hope!

    After 5 1/2 years of "CFS", I was diagnosed w/Lyme and began treatment for it in Jan. 2005. I started out very slowly because I was reacting to everything. Once on the full protocol I was taking:

    Bouloke (lumbrokinase)
    Adrenal Stress-End

    RX Meds:
    Cholestyramine (to flush neurotoxins)
    Nystatin (for candida)

    Acetyl L Carnitine
    Maitake Mushrooms
    Fish Oil (Omega 3's)
    (and a bunch of stuff for other health issues)

    I was very ill for months. Walking became so difficult I could only make it around the perimeter of my house. I went into a deep, plunging, very scary depression. I became weak and totally de-conditioned. I lost even more weight to my already skinny self. etc. etc. I had stomach upset, nausea, and sometimes stomach pain.

    Gradually the walking improved, I started to pulse the ABX which helped me get rid of the depression, and I became able to do more. About two months ago, I switched off of cortisol which didn't agree with me, and began to improve with the Adrenal Stress-End (from Dr. Teitelbaum's Enzymatic Therapy).

    I'm now able to drive again, although I don't yet go on the freeway and stick pretty close to home. There are many days that I'm not napping at all, when I used to take solid 2 hour deep sleep naps. I'm able to cook meals and straigten up the house a bit more. I go to more support meetings, take an evening free class, and am able to speak in complete sentences most of the time.

    I'm also considering getting of the ABX soon. My doctor wants me to, even though I still have symptoms. I'm looking into further alternatives, esp. the Rife machine.

    Treating lyme is definately a marathon. It takes a lot of time and much endurance.

    Keep on with it, you'll see results!

    Best wishes,
    [This Message was Edited on 05/29/2007]
  6. grace54

    grace54 New Member

    I am happy you are getting on with your life. I pray that all my years of being ill will not be wasted. What a struggle we must go through to get better. I feel for those who don't know what they have and have no clue how to treat it.

    I talked with a gal locally who has lyme and she uses a zapper and says that has been the most helpful treatment to kill the pathogins.I am still not sure about it but I guess some our getting good results. Anyway thanks for the hope.:)
  7. victoria

    victoria New Member

    He's now 19, will be 20 in August... he was positive on Western Blot May 2005 and again Nov 2005... has been on different combinations of oral abx since, in pulses, for lyme and probable babeosis and bartonella.

    We just saw his doc yesterday... he is to continue another 3 months with the 3 abx plus flagyl and hyperbaric he's now doing for lyme/bartonella/babesia. the hyperbaric seems to help a lot with the herxes. Plus he is able to now pulse the meds, taking them 2 weeks, then 2 weeks off.

    When I look back on how he was 2 years ago compared to now, there is a huge change, mostly in the pain and energy level altho there have been a lot of ups and down.

    (Well obviously dealing with herxing can be quite difficult, and when it's too much, he's had to stop meds to let his system calm down. This system seems to have worked well rather than using unrelenting abx. We were told this was possible because of the long replication cycle of lyme and the others.)

    So while we were told to expect about another 2 years of treatment, he will be able to slowly continue to space out the amount of time he is off the meds as his immune system builds and the amount of lyme continues to be killed off by the rounds of abx.

    all the best,

  8. grace54

    grace54 New Member

    to take a med when you know you may feel worse than you already do.Many of us have been sick a long time and it can be scarey when we don't know if we are allergic to a new med or if we are herxing.

    I guess it takes a certain amount of faith too that we will get better as many have tried so many things with little results. It is helpful to have the support of others who travel a similar path. It is good that we are giving back and useing our suffering to help and encourage others,In that sense all our years of suffering are not wasted and we have become more sympaathetic to the plight of the ill.That is truly spiritual growth.

    Depression is a terrible thing as it makes everything we do so much more difficult and even hard to see improvement as it robs us of any joy we could experience. The first day I took my ABX I felt a lifting of the depression and that feeling of well being,and that I was finally on to something that will help, you know that normal feeling that most people have. I felt so grateful that I had to say a prayer of thanks.It is times like that when we catch a break that keeps me going, plus you all on here that truly get it. Blessings to all
  9. victoria

    victoria New Member

    One of the questions my son had for his doctor this past week was why do we read about some who seemingly feel better as soon as they start abx or at least very quickly like in a week or 3 or so...

    His answer was that it was a 'honeymoon' of sorts, that that is what can happen if you're not taking the right abx for the strain; unless you experience herxing, you are not killing the spirochetes.

    The knowledge and experience that my son has gained from herxing and slowly feeling better over the past 2 years that keeps him going however, is this:

    every time he has to take a longer-term 'holiday' from abx to let his immune system calm down, he starts off by feeling much better, but by about the 4th week of no meds, he can feel the joint pain and all the other symptoms that have basically disappeared coming back full force.

    Whew, that was one long sentence, hope it made sense!?!

    all the best,

  10. grace54

    grace54 New Member

    The little I know about Lyme disease I can see how serious it is and how difficult to iradicate. It must be very tough for a teenager with all the hopes and ambition and goals one has. I can still recall when I was 17, I thought I was indestructable and the last thing on my mind was illness and medicine.

    I bet he feels alot older with this disease though. I would guess one would mature much faster as they have suffered much already. It never ceases to amaze me when I watch those little guys with cancer on tv and what fighters they are and they still have the beautiful spirit of youth, the hope, the smiles, courage etc. It keeps me in check to see what some kids suffer through.I Hope for a swift recovery for you both:)
  11. munch1958

    munch1958 Member

    Good post Grace! I've been wondering how everyone is doing too. Since I found out Lyme was lurking behind the fibro I don't feel like I belong on the CF/FM board. Now I'm feeling a bit like a lost soul.

    Wish my brain could figure out the buttons on the "big" Lyme board. The culture on that board is very different.
    Things I'd think nothing about posting here are not accepted there. Seems to be quite a bit of censoring going on. Guess I don't fully understand all of the pol-i-ticks of Lyme yet.

    I started 250 mg. Zithromax in April and added 1/4 of 250 mg. of Flagyl a month later. Wow! Flagyl is awful. Physically it wasn't as bad as I expected it would be but mentally it's been awful. Urghh, it's Chemo for Lymies!

    I worked my way up to the full dose of 250 mg. 3X per day and was able to take Zithromax 2X but had to stop everything because the depression was too fierce. Plus the metallic taste in my mouth from Flagyl made my food taste gross.

    I've got no appetite at all. I'm also finishing up my 3rd week on 16 Nystatin pills a day. Yes, that's 4 tablets 4 times a day plus 200 mg. Diflucan. Urgh!

    The FFC was never able to eradicate my candida infection. They used 1 Nystatin tablet 3X per day. I did not think this was enough since my other holistic doctor gave me 3 tablets 3X per day in the past.

    I understand that Bb converts into the cyst form so a cyst buster like Flagyl needs to be taken with the ABX. I've been trying to work my way up to the full dose on Buhner's herbs but can't get past more than once a day.

    Sarsparilla root was helping to keep the herx monster at bay but I ran out. I keep reading that the worse the herx the better the treatment is working. I don't want to die in the process of trying to kill off Bb. I'm starting to think the bacteria is going to outlast me.

    I didn't think I had any co-infections but seem to have awakened the Babesia beast with ABX. What I thought were mild night sweats from low estrogen have turned into drenching night sweats probably due to babesiosis. Years ago I had those drenching sweats but they went away. Never knew what caused them or what stopped them.

    I've gone back on Arteminisin but have many questions for my LLMD. I'm just not sure about what infection to tackle first and in what order. I've got 7 more kinds of ABX here but was making decent progress on Zithromax.

    I passed the neurotoxin test on Dr. Shoemaker's website but flunked it at my LLMDs office. The FFC said hypercoagulation was not an issue either. When I got to the Lumbrokinase part of the protocol I got very ill.

    I'm trying not to be stuck on the mismanagement of everything by the FFC. My point in mentioning these things is that bases I thought had been covered have not really been covered. I simply didn't think these other things were issues because they were eliminated by the FFC. Turns out that means NOTHING!

    The results of my 24 hour hormone test from my LLMD showed that I make almost no growth hormone. It didn't even register at the bottom of the scale on the test. The FFC uncovered this but the doctor would not prescribe anything but Gamma Grow because she "prefers the natural method" or their supplement.

    Over the past 27 years, I have tried almost every antidepressant on the market with no improvement in depression symptoms. I've felt all along that it's been a medical problem but could never get a doctor to diagnosis it or prescribe anything for it.

    Now I FINALLY have a prescription for human growth hormone.
    It's been a fight with my insurance to get this medication covered for over 2 weeks. It took me 4 different doctors and 14 months to get a RX. Now that I have one I can't get it filled unless I pay $348 a month.

    I call the insurance company EVERY single day. They keep saying it needs to be preapproved and my doctor needs to provide info. He's done that and even faxed a letter as to why this is medically necessary. Coverage was denied and appealed and then denied again.

    Today they said they won't pay for the growth hormone unless I see an endocrinologist and have a stimulation test done. They won't even tell me what the co-pay is going to be after I've jumped through all of the hoops. I changed brands to get a lower price but the cash price for the drug is $285 a month!

    My frustration level is very high. Reading success stories is a big help. Keep them coming!

    Last year when the FFC put me on 200 mg. doxy 2X per day I developed a sun sensitivity rash. I was not outside in the sun. Got the rash just driving to the store in my car which has dark tinted windows. I tried sunscreen but it did not help. For this reason, my LLMD does not use doxy in the summer months. Please be very careful in the sun on doxy!!
  12. grace54

    grace54 New Member

    Thanks for checking in. You have a lot on your plate I hope you don't get too overwhelmed. Ever since I started with The Fibro/fatigue about 8 years ago I have been frustrated and I think things bother me more than they used to. I find that the longer I am out of the game, meaning society, working, slaying dragons etc. I get rusty. I used to handle a lot of stress with my business and family and the stuff today seems trivial but it isn't I guess.

    It's a differnt type of stress today with protocols that seem to kick my but, DR's not sure what is going on, mounds of pills and supplements and you still wake up feeling like crap. I get off the phone with a DR or someone and I just want to run, sometimes I go fishing if I'm up to it or a walk in the woods. I feel like an old hampster on a treadmill going no where:)

    The abx is still kicking my but, if I take one late in the day I won't be able to sleep and I too am still drenched at night, but I notice it is clearing up my lungs no DR has been able to help as they say I sound clear but I have days that are hard to breath and all congested. I think I have been carrying an infection for 2-3 years but no ones picked it up. So who knows what other infections I might be fighting.

    Yes the awful depression that comes with it all. I realise when it occasionally lifts that this too has been chronic. Anything I take that messes with my brain makes me worse even 5-htp so I do a lot of spiritual work and cognitive therapy and just try to be grateful each day.

    I am just concentrating on the Lyme now as it is all too much and I think I am on the right track so I just have to tough it out. Sorry you have to fight for the Growth Hormone, just more stress you don't need. I am glad we all have each other here to get through this stuff as no one else would believe or understand what we have to deal with.There is much hope but it is a long journey sometimes, Blessings to all
  13. nyssagirl

    nyssagirl New Member

    I read your response and want to know more about Tetracycline. Is it an antibiotic and did you take it orally. I have tried oral antibiotics and got so sick on them, I had to quit. can you tell me more about the Tetracycline?
    Thank you so very much.