I'm getting better one year report

Discussion in 'Lyme Disease Archives' started by Daisys, Oct 8, 2008.

  1. Daisys

    Daisys Member

    After a year of almost nonstop herxing, I came thru a door of wellness, and experienced a month of feeling like I had gotten my life back again. Of course, I was aware of all that it took to prop me up to that point.

    Then, I had an appt, and my LLMD saw how strong and well I was, and put me on the cyst busting phase. So, I'm back to herxing. I'm also cutting down on some supportive things--all antiviral, and hormonal support was either removed, or cut in dose.

    So, I have 3 months more of treatment woes, but at least I had a taste of what my life will be like when this treatment is over. It will be sweet.
    [This Message was Edited on 10/08/2008]
  2. lpn9999

    lpn9999 New Member

    I'm so happy for you! It gives us hope that things will go well here.

    Thanks for your report, and hoping that next time the good times last longer!

  3. victoria

    victoria New Member

    I am so happy for you!

  4. brainfoggy

    brainfoggy New Member

    And then go back to real life, and live to the fullest everyday!!!

    So glad you are over the worst

  5. Daisys

    Daisys Member

    Thank you for the well wishes.

    This cyst busting is no fun, and especially since I have SAD pretty bad, and it's already gloomy around here. But, I'm definitely better off than I was a year ago, and the end seems "in sight" for this treatment.

    Then, I hear I'll be given what herbs to take to keep from relapsing.
  6. Daisys

    Daisys Member

    I got some sort of viral illness, and am not on ABX right now. My doctor has me on herbs until this clears up. I'm taking this oportunity to work at building up my gut. Soon, I will be taking Samento and Cumanda during the SAD days of early winter. When I start feeling stronger, I'll go back to the ABX.

    It's odd, but I could feel it start in today--the SAD. It's always toward the end of October that I start to feel depressed, and then I get sick often. Then, sometime in January, I can tell that I'm getting better.

    At least now I have a doctor to help me thru it all this year.
  7. Daisys

    Daisys Member

    I was supposed to report to the Dr. today whether the virus is gone or not. I've been confused, but now I think I've gotten it understood.

    I believe the virus was gone Monday. My blood pressure went back to normal, my appetite improved, and I felt well. However, I started having symptoms that made me wonder if it was coming back.

    I'm taking Samento, working up in dosage since Sunday. I notice, as my dose gets higher, that I may be herxing. I have more joint pain, chill/sweat cycling, and headaches now and then. Yesterday, I got lymefog for a little bit, and that's when I realized I may be herxing on the Samento.

    This is encouraging to me. It shows me that these herbs will keep the spiroketes from getting stronger while I'm taking a break from the ABX treatment. In fact, I may be making headway while I wait to get strong enough to resume treatment.
  8. Daisys

    Daisys Member

    I'm sorry you have this, but glad you found a good support forum--here!

    The best advice I can give you to learn about lyme disease is to search here (the ProHealth site), and also at the ILADS site. There, you can find the Burrascano protocol, that hopefully your doctor has. It's the "bible" for treating lyme disease. There's a section for patients you'll want to read, and really good information about Lyme disease and the different treatment options. It would be good for you to know as much as possible about your treatment, so you can cooperate with your doctor.

    I was treated at first for straight lyme, but as I got a little better, I started showing signs of babesia. So, sometimes the coinfections show up later.

    I printed out the 30 pages of the Burrascano protocol, and use it as a reference guide. I would suggest, since your doctor is just starting out, to ask him if he has that--and if not, I would give him a copy. It's a compilation of what's worked for a lot of lyme literate doctors.

    Oh, I'm on the West coast, Washington state. I'm really glad your doctor is willing to work with you. I wonder if he's heard of the ILADS society. They are from all sorts of medical fields, and share information with each other.

    It's a good first step that your doctor is willing to learn. That makes me hopeful that he will be a good doctor for you.

  9. Bluebottle

    Bluebottle New Member

    That's great news daisy, I hope you continue to make progress x
  10. Daisys

    Daisys Member

    Thank you for wishing me well.

    It looks like I'm doing so well on the herbs, I may just finish out my treatment with herbs. So, it looks like I may be spared the cyst busting phase.

    I have good days, but the pain level also has risen. The site where I got the Samento and Cumanda has a phone number, and I called it. The man who answered said I was at a very high dose, and it sounded like his opinion is that a person doesn't need to take enough to get herxing to benefit. I may call and ask to have my dose lowered a little bit. I would be feeling very well most of the time if I weren't herxing so much.

    The instructions on the bottle says to take up to 15 drops twice a day, and I'm taking 20 drops twice a day. I didn't notice herxing until I got up to 14 drops a day, and at 16 it was definitely noticeable.

    I sure want to take enough for it to be effective. I trust my doctor and will keep to whatever dose he wants, so I'll be calling about this soon.
  11. cherylsue

    cherylsue Member


    I seldom come to this board anymore. I started working full time the end of August, and my life has been very busy. I'm funtioning between 80-85%.

    That said, I want to say how happy I am that you are doing so well, too. We started Lyme treatment about the same time last year. It's had its ups and downs to be sure, and there were many times when I thought if I were really on the right track.. But yes, it slowly gets better.

    I, too, am on a cyst buster,, Flagyl. I can only tolerate it once a week at 1/4 pill, but that's what I'm doing. I also do a shot of methylcobolamin B12 twice a week. Like you, I still herx on meds. I take the Flagyl Friday night so I can work on Momday.

    God bless you.

    Your fellow lymie,


  12. Daisys

    Daisys Member

    Thank you. I see you over at the other place (lyme.net), but I rarely post. If I have a question, I do a search, and usually find what I need to learn.

    I'm glad you're back where you want to be. I remember that it was very important to you to get back to work. It looks like your situation is in hand. It's not a sprint--we need to be able to get well and have our life too, so it's a good game plan that you came up with.

    I doubt that I could work fulltime at this time, especially during the dark, short days of early winter, but I am confident that this spring and summer, I'll be making strides in progress.

    I've been saying that I've improved 80% from last year, but on the activity scale that I used at the doctor's office yesterday, I'm probably at 60% of a normal day's activity. So, I'm keeping up with the basics in my schedule, and content with that for now. I can do 20 minutes of pilates, without paying for it later, so I'm getting stronger all the time.

    I appreciate your "visit" and wish you a continuing healing.

  13. Renae610

    Renae610 New Member

    Wow! I'm sooooo excited for the progress you both have made!!

    Daisys, I hear that Grapefruit Seed Extract is also a Cyst-buster. Would that work as well as Flagyl?

    I need to ask you both, can a person get well on the NutraMedix herbs alone or are antibiotics absolutely necessary? My daughter has such poor gut function (Leaky Gut, dysbiosis, Celiac, etc) which hasn't changed no matter what supplements she has been on, so she is afraid to take antibiotics. Should I somehow convince her?? This is one of the reasons she quit going to the LLMD who advised her to take Zithromax, Mepron, and Colloidal Silver. She has had bad reactions to most drugs but does tolerate these herbs. Perhaps I need to have a CD-57 test repeated now after a year on the herbs and see if any progress is being made. I do not see enough progress with her as you describe!!! Advice would be much appreciated!!!

  14. Daisys

    Daisys Member

    I just had an appt. that was a turning point for me. My doctor had just been to a ILADS convention. They used to believe that if a person went 2 months without symptoms, and their CD57 count was normal, they were considered well. Too many would later relapse. So, they looked into other directions for answers.

    Some have a low level infection that isn't curable. The body responds by making cytokines, which is normal, but should go away when the infection is gone. My doctor feels I am one of those who have a low level viral infection that is not going away. So, all my symtpoms are from too much cytokines--pain, insomnia, and hormone disfunction, all from HPA disfunction.

    Here's what I'm taking--besides a real good vit/min. mix (plus a lot of other supplements that maybe will be dropped later):
    Quercitine (no preferred brand): 500mg 3 times a day to block the manufacture of cytokines.
    Fibroboost (Allergy research group, at least for now): 2 pills 2 times a day to block cytokine stimulus.This is Ecklonia cava extract 1200mg.
    Grapefruit fruit extract (for now Integrative Therapeutics Phytostan, because he trusts the brand) for 25mg of grapefruit fruit extract): 2 pills 2 times a day because it helps the other supplements work more effectively. Later, I'll find a source that is just the grapefruit fruit extract, without the other products, but he wants to start out with products that he knows are good.
    For the lyme germ, I'm to continue to switch the NutraMedix Samento and Cumanda every 12 days, 20 drops twice a day for both.

    I suggest for poor gut function, to find the diet that fits your daughter's needs. I am so sensitive to gluten that I can't even tolerate a bit of wheat grass, or oats. I've been eating maiinly organic vegetables, and meat that is natural (no shots, free range, not grain fed beef, etc.) So, I no longer have trouble that way, but did for a long time before I started avoiding gluten and all chemicals that I can. I try to eat food that my great grandmother would recognise.

    One thing my doctor put me on when I had acid reflux is Deglycyrrhizinated licorice. This form is a tablet that you chew. I was to chew 2, and when it mixes with saliva, it forms a protective layer over the esophagus and stomach lining that is also healing.

    I personally don't think I would've gotten the progress that I did without the year of ABX. I started out with a good gut, and made sure to take at least 50 billion probiotics 2 hours after each dose of ABX, along with Saccharomyces Boulardii.

    Maybe your daughter could get her digestive system in good order by diet and building up the gut, and then go on the ABX? I had a horrible year with symptoms while on ABX, but believe they saved my life. But, now I feel that they aren't the total answer, they just get the numbers down quick, so that the body can then start building strength.

    I hope that this protocol works, because then, I'll be off the thyroid and adrenal support, sleep on my own, and not have pain. I'll always have to take something to keep the infection in check, possibly the Samento and Cumanda at a lower dose, and possibly something antiviral.

    I hope you find a solution soon. :)

    [This Message was Edited on 02/08/2009]
  15. Renae610

    Renae610 New Member

    Thank you for sharing!

    As for gut issues,

    (1) We were told that Flora Immune from 4RHealth is the best probiotic to take while on ABX, as it is proven to survive the ABX.

    (2) Having acid reflux could actually mean "not enough acid in your stomach", which may require taking digestive enzymes and/or Betaine Hydrochloride. There was a reason my daughter didn't take DGL...

    (3) My daughter is on an extremely limited diet due to:
    * Celiac (wheat & gluten-free),
    * many allergies (eggs, dairy, etc) and food sensitivities (grapes, apples, soy, corn, etc),
    * can't eat any meat or nuts (lacks enzymes to digest and can't tolerate taking them),
    * must limit fruit/sweets (fructose intolerance), etc.!!
    So, she lives on veggies, rice products, beans, tofu, mainly. I am concerned about this not being adequate nutrition and about too much rice promoting inflammation, but she doesn't tolerate a multi-vitamin and the naturopaths (specializing in this disease) say to just do what she can for now. We have tried eliminating allergies with antigen drops (couldn't tolerate) and N.A.E.T. (didn't hold). I recall that many with this disease, including my daughter, have difficulty processing EFAs (Omega 3)... How can we fix this problem??

    As for energy boost -- She puts electrolyte powder in her water bottle, makes it softer to swallow. This has been the only way that has worked to boost energy (she does take Adrenal support).

    EDS (electrodermal screening) has been the best way for us to find our way through this maze of hypersensitivities. This tech has a large data base to find what supplements my daughter will tolerate. We also bring our NutraMedix herbs and other supplements to put on the scale and see if any dosage changes will be tolerated. Some people accustomed to conventional medical care may scoff at this EDS, but I can tell you from much experience this works!!

    The Grapefruit Seed Extract product my daughter takes is by Vitamin Research (Complementary Prescriptions, Code# CP8231) 125mg per pill. You can take up to 3 per day, but she's just taking one, right now.

    My daughter also takes the antiviral Olive Leaf Extract (East Park Research's d-Lenolate) 500mg per pill. She is very confident this will work. As for the idea that some viral infection is incurable, is your doctor knowledgeable about hyperbaric oxygen treatments that could kill it (although it is very expensive).

    About reducing your herx symptoms -- are you taking Burbur?? Also, have you done "ion cleansing"? People with Lyme/coinfections don't detoxify enough naturally (like a well person does). So with your high doses (same as my daughter takes) of Samento/Cumanda, you could need detoxification help. My daughter starts feeling very toxic, and after we do this cleanse, she feels relief. We bought our own machine to use at home. As she has gone up on the doses of NutraMedix herbs, she tells me that she feels a need for the cleanse more often (every 5 days), so I'm thinking the herbs and cleanse must be working.

    Are you alternating every 12 days between Samento/Cumanda or taking the two together daily??? We were told to use them together, no alternating. Others say alternating is necessary.

    "The man" you said you called, is probably the one we called, who thought my daughter might not be absorbing supplements well. So he said to fix this problem by trying Mangosteen, Goji juice, Noni, or Sea Aloe but EDS test showed NO mango or Sea Aloe, she had a bad reaction to Goji, a setback now from Noni. <frown> And with her gut and sensitivities so bad, I can't see trying ABX either. Seems that we are STUCK. So I am a worried mom, but hoping & praying for a breakthrough somehow .... I have been feeling for some time that she will need Bionic 880 light treatment so talked to our Integrative doc about it and he agreed, and the EDS is now saying this is the ONLY thing that will work!! But now --trying to find a way to get access to this....

    Thanks for your insights!!! God bless you!
    [This Message was Edited on 12/08/2008]
  16. Daisys

    Daisys Member

    My doctor has me on an alternation with the 2 herbs--12 days on each with 20 drops twice a day with both. The reason is to keep the bacteria from getting resistant to either of them.

    I have heard of Burbur. Another doctor also things I should consider Singulair to calm the cytokines down. I'll try to remember to ask about them, next appt.

    My doctor wants me to try this regimen for a couple of months, and he's optimistic that it will be good for me.

    I felt so good in Sept, and then SAD started to set in, and now I'm just gutting it out thru December. It starts to let up by the end of January. I think this spring, I'm going to start feeling stronger, and make some real progress. I'll be cutting back on everything that I can. by Summer, I think I'll see what I'm left with, as far as what's permanent damage, and what is going to be my maintenance protocol.
  17. Daisys

    Daisys Member

    I did ok during later December and the first of January mainly because I went South and stayed where the sun shone, the days were longer, and it wasn't miserably cold.

    Then I came home and got a head cold. At first, I was pleased that my immune system seemed to be up and running, and I felt like I'd gotten over the head cold. Then, it seems, I started sliding into a relapse. I have some days that are better, and then am down again. I just can't wait for it to warm up and get brighter around here. I always get better during spring and summer.

    For the viral issues, I'm taking Virustop, and twice a day, 2 caps each of OLE and Phytobiotics from Wise woman Herbals (an echinacea blend with lots of the usual herbs for this). I'm also getting IV glutathione, which is helpful.

    It looks like I wil always be on something to keep the infections in check, but won't find out my exact regimen until later. I believe the quercitin and fibroboost have helped the cytokine levels calm down. My sleep is better, pain level is down, and energy is better when I'm not actively fighting something.

    And I do remember how well I have felt at times, and believe I will eventually get to a point that I can rely on a certain amount of energy and wellness. I just can't wait until spring and summer!
  18. Renae610

    Renae610 New Member

    Good to hear from you! Yes, Spring is right around the corner, and with it, I hope you'll be feeling much better! <smile>

    As for my daughter-- last week a new Lyme-literate naturopath with a BioMeridian Biofeedback/EDS machine identified why my daughter has been stuck...a bad case of Candida. I'm surprised to learn that Candida is not only irritating the liver but serves as Body-guards to the Lyme!! On a scale of 1 to 21, she's at 10 for adrenals. She's at 24 (off the charts bad), almost not at all breaking down food to blood sugar, and at 21 for not absorbing from blood to cells, under 10%!! Losing bone density. Heart and lung are stressed. Getting off Burbur and Samento. Staying on Cumanda. He wants her to take Orthomolecular's Adren-All, Vascuzyme, and Candicid Forte in addition to the Trace Minerals, Progesterone, and Vit. D she was taking. I'm so worried!!!
  19. Daisys

    Daisys Member

    I feel for your daughter! Sometimes, other things have to be taken care of before the treatment will be effective for lyme. I had to chelate lead and mercury for months before my treatment started making a difference. The spiroketes also use heavy metals to hide in.

    I keep a very low carb diet and take a supplement with caprillic acid, among other things, on a regular basis, so don't have candida problems. However, lately I've been eating more fruit, and find I'm craving sugar more, so I'm going to get more strict. I wonder how low is the best--I know that the brain needs some carbs to work. I was keeping to about 40-50 carbs per day, but now I believe I'm up around 80, maybe even higher. I should keep track for a few days.

    I sure hope the regimen helps your daughter quickly! I'm glad she has you to help her. I don't know what I would do if my husband wasn't there for me. This disease makes victoms of the entire family. I'm sure we could find other things to do with all the money it takes to keep me on my feet. I have a feeling that the maintenance protocol is going to be expensive, so it's never ending...

    It sounds like your daughter has some good medical help, so she should be getting better here soon. So, hang in there, patience and all that--speaking to myself too. :)
  20. Renae610

    Renae610 New Member

    My daughter's diet is so extremely limited due to allergies and food sensitivities. Sounds like you have more options!!

    As I understand it, sugar cravings can mean Candida is doing the craving.
    My daughter was taking products for Candida all along, like Reishi for example, but the problem was, that our EDS testing technician did not have an adequate data base of enzymes! The LL Naturopath's Biofeedback/EDS has a larger program to fit my daughter's needs! I thank God for this advancement and hope of progress!!

    You are blessed that your husband is such a good support to you!! You are worth whatever must be invested for your health!! <smile>

    Thanks for your advice and encouragement!

    Wishing you the BEST days ahead!!!
    [This Message was Edited on 02/11/2009]