My lyme treatment

Discussion in 'Lyme Disease Archives' started by Daisys, Nov 12, 2007.

  1. Daisys

    Daisys Member

    Sept. 18: After getting a diagnosis of lyme, my LLMD started me on doxy 200mg x a day, and ceftin 500mg x a day. He asked me not to self treat for viruses, so he can see what the abx treatment is doing for me.

    The first 2 weeks I gradually felt worse and worse. At first, I sneezed and felt like I was getting a head cold every morning. Adding by the day were: sore throat, headache, stiff neck, and lower energy than usual.

    After a week, I experienced shortness of breath, on and off for a few days. (I remember having this symptom from time to time thru the years).

    Then I started experiencing achiness in my upper back/shoulder/neck area that I had for the first time last autumn--when I had a severe relapse of what I thought was classic CFIDS/FM.

    Two new symptoms appeared: chills/fevers cycling thru the day, and neurological "glitches" hard to describe. Sort of like when a doctor gave me an overdose of an antidepressant. (I was supposed to take a tiny dose to help sleep, but he didn't understand and gave me a starter dose for depression which is much higher).

    The end of the 2 weeks of all this getting worse by the day was on Tuesday Oct. 2. I had the neurological glitches whenever I was up, and so spent most of the day in bed. All symptoms were present and at their worst.

    The next day, I was remarkably better. I had only one neurological event for the next 2 days, and then they basically stopped. I felt better by the day for about a week, with all symptoms either lessening or disappearing. I even started exercising a little.

    After that week of improvement, I had worse headaches and soreness for a few days. The area around my heart felt sore and almost like a burning sensation.

    Then, I improved, getting less sore, but always some upper back soreness. Some symptoms came and went: hip pain, extra fatigue, stiffness after being still, and especially the chills alternating with low level fever.

    This held for several weeks, with ups and downs in the soreness level of my upper back. I didn't have a lot of energy, but walked every day either a half mile or more, and sometimes a little bit on the Nordic track.

    This last week and a half, the chills have come less often, and the fevers became more prevalent. I've gotten into the habit of taking an hour's nap every day. Even though I wake up feeling I've gotten adequate sleep, I'll suddenly get very fatigued and just have to lie down.

    The fevers come suddenly: I'll suddenly break out in perspiration and feel damp. I'd say it's like hot flashes of menopause except my tempt goes up 1-1.5 degrees over my normal. Sometimes I get up to 99. but usually it's under that. If I drink a glass of water, it immediately comes out all my pores, and my temp goes up. Needless to say, I've been drinking double portions of water.

    So I seem to be in a holding pattern of low energy, sleeping well, napping almost every day, and a little soreness in the upper back area. The fevers occur less often--maybe 3-4 times a day, and don't feel as quite as feverish.

    My next appointment is in a little over a week. I'm suspecting I have a co infection because of the fever spikes, but overall, I'm definitely seeing improvement.

    After the first 2 weeks, I've felt better than before I started this treatment. I know I could still go thru some misery before this is all over, but for now: so far, so good.
  2. mollystwin

    mollystwin New Member

    I'm glad you are seeing improvement!! It does sound like you may have a co-infection with the fevers. It will be interesting to see what your doctor says.

    You probly will go through more misery, you are right about that! I always forget that and when I go into another herx, I get bummed!! But they are less as they go by and the better days are feeling even better!!

    Take care!
    dar
  3. Daisys

    Daisys Member

    Thanks for the encouragement. :)

    Yes, I hear that when meds are changed, a person can herx all over again.

  4. Daisys

    Daisys Member

    I keep a detailed health journal, and also try to sum it up on a calendar to catch patterns.

    I don't know how I'm going to get this into just a paragraph or two for my doctor. I may write something like this first post, and try to condense it a little more.

    I've learned a lot from you two, so thank you for sharing your experiences here.
  5. Daisys

    Daisys Member

    Thank you! It may sound worse than I feel, because most days everything is at a pretty low level. The only thing that is constant is the low energy, except sometimes it goes into fatigue (worse).
  6. munch1958

    munch1958 Member

    I'm really bad about keeping a journal. I started up a log but never seem to have time to update it.

    http://www.lymelog.com/

    Daisys, I'm very impressed with everything you've done so far. It's so difficult to switch gears when you've thought it was CFS/FM. It made me feel like my world was turned upside down. I avoided Abx like the plague because of candida fears.
  7. Daisys

    Daisys Member

    Thank you, I saved the site for lymelog on my favorites list, but haven't joined it yet. I am curious about it.

    Is there an interchange among the members there? Or is it just each person has a log only they can access, and that's the extent of it?

    I was completely stunned when my doctor told me he thought I had lyme disease. I, too, had negative feelings about taking long term abx, but I take a lot of probiotics, and hopefully that will keep the gut in good health.
  8. cherylsue

    cherylsue Member

    From your description of your herx it sounds like you may have babesia, too. Hang in there, okay?

    I started on amoxicillin, but had to back down because of the herxing. I'm starting it again. I've been taking cumand for 4 months, too. Like you, I was nervous about ABX, but I think I need them, too.

    Best wishes,
    CherylSue
  9. Daisys

    Daisys Member

    I was wondering if I had a coinfection because of the temperature spikes with perspiration and the rapid pulse. I have my appt. Tues. and hope to see progress with that.

    My PCP thinks I'm on too much armour, and wants to cut it way back. (I think she goes by the numbers and looks at the wrong ones)

    My LLMD goes by symptoms, and upped the dose a little bit a couple of months ago. The chills/fevers started before the change in armour, but the rapid pulse just started a few days ago. (That would jive with too much, because it takes a couple of months to kick in, I've been told)

    However, I'm sleeping better than ever, am mellow rather than nervous or anxious. My blood pressure has stayed the same and my weight is staying the same, with lots of ups and downs. I don't have more energy.

    I'm hoping this gets straightened out at my next appointment. This is beyond me, just too complicated. I definitely will follow the LLMDs treatment.

    I'd look for another PCP, but I don't know that there's anyone else around here that would even use armour at all, or coordinate with a LLMD.

    I did talk to a chinese medicine/acupuncturist who specializes in lyme disease. She says the chinese have been working with spiroketes for a long time (syphilis) and their medicine builds up the immune system while curing lyme disease. She thinks the South American herbs are too harsh. I'm intrigued, and will be discussing this with my LLMD and my regular acupuncturist/TCM person.

    She didn't tell me what herbs are in her treatment, but I'm sure it would be hard to replicate it even with a list of the ingredients.

    I have decided not to be on abx longer than I absolutely have to. I want to add herbs as soon as my LLMD gives the OK. I think I may commit to this TCM treatment. She asks for one year of taking the herbs, and the cost will be 1,000 to 1,500 for the herbs. My insurance covers her visits.

    It would be nice to get better without a lot of risk. Although she did say there would be a pattern of feeling worse and then better.
  10. Daisys

    Daisys Member

    My LLMD hasn't even mentioned that to me. I'm on the first 2 months of doxy and ceftin, and I think he wants to see what happens (patterns, etc) before establishing any protocol.

    I'm going to be asking about heparin next appt. It seems to me, tho, that I've herxed, and now have an established pattern of symptoms that could well be a co-infection.

    Do you mean your doctor wants to put one of those lines in, or do they give shots for some IV treatments?

    Whatever it takes, I guess. Yes, I've had this a long time, but not as bad as a lot I've read about. It's come and gone to an extent, but lately has progressed in a scary way. I'm so glad I found a LLMD--it was just in the nick of time!

    Except, it would've been nice to be treated back in 78!

    Adding later: My LLMD doesn't use heparin. He says it gets out of hand too easily. I forgot what he mentioned, but I think they're enzymes that accomplish the same thing.


    [This Message was Edited on 11/24/2007]
  11. cherylsue

    cherylsue Member

    I did three months of TCM treatment earlier this spring. It cost me $1,000 and the TCM doc said I would be cured and be able to return to work in August. Well, I relpased the end of the 3rd month and stopped. Don't waste your time. Maybe Dr. Zhang's protocol My be helpful, but I haven't heard anyone yet cured by TCM.

    The South American herbs (cumanda, banderol, samento, etc.) do pack a strong punch, and one has to go slowly. About 6 out of 10 do get relief from symptoms over time. More and more LLMD's are incorporating them into their treatment. These herbs following ABX seem to prevent relapses. Many patients can relapse after ABX treatment. The herbs seem to prevent that from what I've been reading and hearing from posters.

    However, the prrof is in the pudding, so to speak. I've been on cumanda/burbur since July. I've made progress, herxed a bit, and backed off or took burbur, and plan to continue indefinitely. My LLMD said I could take them along with the amoxicillin.

    I still suffer from fatigue, burning skin, and occasional malaise. The brain fog has cleared up considerably.

    Hope this helps.

    CherylSue
  12. Daisys

    Daisys Member

    I appreciate your input. I also have taken TCM for a year or so now, and it has helped me stay on top of the detox aspect: my system can really unload the toxins.

    This woman is saying she has a protocol specifically for spiroketes. It's supposed to kill them while building up the immune system.

    I'll be asking my regular acupuncturist/TCM person about this. She was trained in Hong Kong, and built up a successful business there, so I think she'd either know what this other one is talking about, or who to contact to ask. I'll post about it, when I know more.

    Meanwhile, I trust my LLMD, and we've already discussed briefly the prospect of using herbs along with the abx.
    I think that's the way to go.

    Also, I feel that whatever level of health we finally attain, we will always need some sort of herb/supplement maintenance routine to avoid relapse.

    Meanwhile, I'm trying to patiently let the LLMD lead the way. He's not treating me as if this is something to be hurried. I think he's picturing me as a long term project. I intend to ask him about it next visit. I'm not feeling patient about it at all--time's awastin'!
  13. Daisys

    Daisys Member

    I've had symptoms that could either be too much armour, or viral infection (Pulse is fast a lot of the time, and my tempurature spikes up to almost low level fever several times a day, along with perspiring). My LLMD feels it's viruses, and I had blood drawn for both thyroid levels and various viruses.

    I'm also supposed to look into Dr. Zhang's protocol. I brought up the subject of using TCM with Abx treatment. This would be way down the road anyway, if I do end up using it.

    Otherwise, I'm reacting well to the treatment and am to continue with the same routine.

    It looks like I have a pattern of feeling worse for a few days every 3 to 3 1/2 weeks, which fits the lyme bug life cycle.
  14. Daisys

    Daisys Member

    I've read over at lymenet that many LLMDs will treat the coinfections first before they even start to address the Bb infection that causes lyme disease. Mine hasn't tested me for any coinfections yet.

    The doctors are all different depending on their own experience.

    I used to get migraines, and I really haven't had trouble with headaches since I got thru menopause--until I started this treatment.

    Chronic pain isn't just a symptom--it becomes a stress to the body, and so needs to be addressed. It looks like you have a good doctor.

  15. Daisys

    Daisys Member

    I realized I had inadvertently put too much armour in my organizer (3 grains instead of the 2.5 I was supposed to have). Wouldn't you know it, the 2nd day of too much was when my blood was drawn to test for my thyroid levels! AGH!

    Also, I forgot to tell my doctor that my acupuncturist gave me something to take that she felt would support my thyroid. I looked closer at it afterward, and wonder how much difference it made. I think it's homeopathic. I left a message with my doctor about both things. I probably will have to do the test over again.

    I stopped the supplement entirely, and didn't take any armour for 2 days, and then today added back 1 grain. So, almost all the symptoms have eased up. My pulse still was fast once today, but my tempurature is down to 96.9, so I need to get back to my recommended dose.

    One thing I'm remembering from the visit--I should expect to feel substantially better in about a year, and should be pretty much done with the treatment in 2 years. That's not promising that I'll be cured, because there will be something to take to keep from relapsing.
  16. Daisys

    Daisys Member

    I think he has Dr. Zhang's protocol in mind, or the South American herbs that you see discussed here a lot. Cherylsue is on those.

    I haven't seriously looked into it yet, because it's a long way off for me.
  17. tvance

    tvance New Member

    Has anyone tried MMS for Lyme disease?

    My husband and I are having great results on MMS and a year's supply for two people is only $20. It is cheap.

    Roi got relief after on 5 days on chlorine dioxide mineral and water purifier. All the Lyme rheumatoid swelling and pain left his hands. We took in internally, activated it and by the drops. We're still each taking it after 5 weeks and it seems to be working elsewhere now that his hands are freed up.

    Good luck,
    I wish you wellness
  18. cherylsue

    cherylsue Member

    I'm curious as to who your LLMD is. I see Dr. C in MO. Your LLMD's protocol seem different from mine.

    My symptoms don't seem as extreme as yours. Lyme affects everyone differently.

    I'll be following your progress. I wish you a faster recovery than you anticipate!

    Hugs,
    CherylSue
  19. Daisys

    Daisys Member

    I'm on the West Coast. Do you go to lymenet or another place that allows PMs? If so, I don't mind telling you privately who I see.

    Funny, I thought you were worse off than me. (I think you react more drastically to treatments than I do.) But then, I'm not seriously considering going to work in January, so you must have more energy than I do.

    I have less pain since starting treatment, and my mood is a lot better--even tho I get weepy easily, and that is definitely not my normal way!
  20. Daisys

    Daisys Member

    What is MMS? I've never heard of it.

    I'm glad you two found something helpful for you!