Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
Just to give hope to some people struggling with LD.
My health deteriorated about 6 years ago. It started with prostatitis, ED, problems with swallowing and attention deficit. Nine months ago in January I was already dying. In the very last moment I had applied treatment with Questran that helped me meaningfully. The response was sufficient to convince myself and my doctor that I had LD indeed inspite of having negative tests for Lyme. I was in miserable shape and didn’t want to live. I had memory problems (one time I couldn’t find my way home), attention deficit (I couldn’t follow dialogs on TV- they were too fast for me), I experienced horrible constant pains of every part of my body (like in spread cancer), couldn't sleep, my body twitched and vibrated and I was always very tired and spent my days in bed. I haven’t seen anybody, cut off myself from all people I knew.
To make things worse, there was no LLMD in my province and I had no cash to travel. I was hit by the disease at the time when I was a full time university student so didn’t receive any financial help that I would if I worked at the time. My spouse got very angry and unsupportive about my sickness. She considered divorcing me when she had learned about my sickness. Finally she didn’t divorce me only because she new she would have to pay me alimony. ID in my province refused me treatment with Rocephin as he knew better ways of spending public funds (his exact words) and my life would be to expensive to save. ('Great' Canadian Healthcare system in province of Saskatchewan, if anybody is interested - you feel the irony I hope, it is free but limited to typical and easy to treat cases)
Now the good things. I have received some help and good tips from some participants of this forum (thank you guys, you have literally saved my life). Also I did some library research and administered myself a treatment with help of my regular family physician (who was very sceptical at the beginning but turn out just fine later). Unexpectedly to me my dentist has become a real friend in need, he comforted me really well and gave me hopes; also he made for me a dental device for my sleep apnea free of charge (normal cost was $2500). My insurance has covered nicely all my drugs, even the fancy ones such as Tinidazol from a compounding pharmacy. Anyway, cost of my treatment so far is only ~ 7000 $ Canadian (my own cost about a $1000 + lost income for two years)
I have never used i.v. treatments, only orals. Today, I have just traces of symptoms: slightly oversensitive skin and Lyme 'carpal tunnel'. Every week I am a little better. Life is fun again. I walk, I run, I grill sausages. My mind is sharp again and close to what it was before sickness.
I feel that life offered me a second chance and I celebrate although I know that my treatment has to continue.
[ 12. September 2005, 10:43 PM: Message edited by: Areneli ]
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posted
That's awesome, Areneli!! YOu may want to tell others what worked for you. Here's hoping you can get off meds and stay off!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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hiker53
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Member # 6046
posted
Hallelujah! May your progress continue!
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8943 | From Illinois | Registered: Aug 2004
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timaca
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posted
Thank you for your encouraging words. Please post what you took to help you on your road to recovry.
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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lymeHerx001
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Member # 6215
posted
thats excellent...IM sure we all are waiting for a response from ourselfs that is so optimistic and uplifting and PAIN FREE
Posts: 2905 | From New England | Registered: Sep 2004
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Thank you so much for sharing what you went through. It means so much, especially since I have only just figured out that I might have Lyme and I'm staring down a gaping tunnel of what that all means.
Alison
--------------------
The obscure we see eventually. The completely obvious, it seems, takes longer. --- Edward R. Murrow Posts: 923 | From California | Registered: Aug 2005
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posted
Areneli, So glad to hear of your good recovery! I hope things continue to improve for you!
Posts: 663 | From NH USA | Registered: Sep 2004
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beachcomber
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posted
Great! So, what worked for you and how long did it take.
Thanks for sharing.
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Happy for you
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
I'm so glad to hear that this isn't an endless illness for everyone and hoping that we all get what we deserve after suffering so much.
Congratulations,
Cigi
Posts: 320 | From Upstate, NY USA | Registered: Dec 2004
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dmc
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posted
your story of determination, stamina, and courage of conviction, is an inspiration to me. Thank you and may you continue to be blessed with improvement and good health.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
Actually, I have mentioned some aspects of my treatment a few times before on this board. One day I will describe my complete treatment in one post but will wait with it until complete recovery.
Just to be sure that my treatment is a good one.
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posted
This is so wonderful to hear. Congratulatons and may your health continue to improve.
Paul
Posts: 199 | From Santa Cruz, CA | Registered: Oct 2004
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liz28
Unregistered
posted
You're a real winner, Areneli. Please keep posting your success story over and over, as you have a lot of positive energy and smart sensibility that shines through your posts. And hey, what were those abx again?
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Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
OK, I will describe it now but be advised that I am still under treatment and my outcome is promising but unknown. At first I reduced a load of Borrelia with Amoxicillin. I took increasing doses of Amoxicillin up to a dose of 27 g/ day. I took this abx for about 4 months and herxed terribly after each dose increase. For some time I have combined Amoxicillin with Tinidazol starting from a small dose of 250 mg and went up to 2.2 g per day. Than in April developed serious Candida problem that almost killed me. Switched for a few months to vitamin C in mega doses and olive leaf capsules (and no ABX). Herxed after vitamin C. Treated successfully Candida with diet, Primal Defense Powder and Candida Stop. Started taking ABX again 6 weeks ago: 12 g of Amoxicillin, 800 mg Ketek, 1500 mg Tinidazol, 500 mg Plaquenil, and 6 g of vitamin C per each day. After 3 weeks of intensive herxing started improving quickly. Continued with Candida Stop and Primal defense powder to keep yeasts away (no need to keep diet with this combination once you achieve certain balance). I also have been taking Questran for the last 9 months to facilitate toxin removal but presently I take only one sachet every other day (initially used 3-4 sachets per day).
Contrary to Dr. Burrascano I think that a person should start with only one ABX, herx and improve. Later after achieving a meaningful improvement all forms of bacteria have to be attacked with ABX (spirochetes, L forms, cysts). Many LLMDs (if not all) order just the opposite. They start with the full battery of ABX including i.v. counting for quick improvement and than they decrease doses and reduce number of ABX. Unfortunately, that way bacterium can survive treatment easier and a relapse is likely. I propose very intensive treatment at the end of the treatment, not at the beginning. Also, if I would have started with such a intensive treatment herxing would likely had me killed or treatment would be discontinued due to 'side effects' of ABX.
At present I take Amoxicillin to kill spirochetes and penetrate behind BBB; Ketek to kill L forms and weaken Borrelia living inside cells, Plaquenil to adjust pH of liposomes and accelerate action of Ketek, Tinidazol to attack cyst form and reduce mobility of spirochetes. I assume that vitamin C changes cell membranes in such a way that spirochetes cannot penetrate cells (have no proof for that but many people experienced Herxes and improvement after vitamin C and this mechanism seems to be plausible).
I am surprised that I have tolerated the complex treatment so well but none of the ABX is really toxic to me. Initially I had blurred vision after Plaquenil and Ketek but with time the problem is disappearing. Perhaps it was an eye herx.
[ 13. September 2005, 01:28 PM: Message edited by: Areneli ]
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groovy2
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posted
HI Areneli
I am happy to hear you are doing so good- --Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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troutscout
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posted
way cool!!!!!!!!!!!!
Trout
-------------------- Now is the time in your life to find the "tiger" within. Let the claws be bared, and Lyme BEWARE!!! www.iowalymedisease.com [/URL] Posts: 5262 | From North East Iowa | Registered: Sep 2002
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
That was wierd I posted in another topic and it took me here
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
Areneli, I'm very happy for you. I know from reading your posts how hard you've worked to regain your health by doing lots of research and being very proactive.
I wish you continued success. Thanks for inspiring us.
Posts: 925 | From California | Registered: Sep 2004
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Your theory about starting out slowly is very interesting. You may have something there.
You know as well as any that this protocol may not work for others since each person's treatment works differently than other's.
There's also the possiblity of coinfections.
The starting out slowly is definitely something we should consider though. It's kind of the way I went about it and I'm doing better too.
The Questran/CSM/Cholestyramine has made a big difference for me too. I'm currently taking 2 a day (took 4 a day for a while too) and it's good to see that 1 every other day is working for you.
Keep up the good work,
Corgilla
-------------------- "I'll never forget good old Whatsisname." Posts: 694 | From PA | Registered: Jun 2003
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Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
I know that. In addition, not everybody can take 12 g of Amoxycillin per day. Please also aknowledge that I still consider myself a sick person.
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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Linda LD
Frequent Contributor (1K+ posts)
Member # 6663
posted
Areneli,
Like you, my doctor is afraid that too many meds would be harmful. she thinks our southern Lyme disease is slower to come on and hard to get rid of--so I only take one zith a month.
I took 12 days of amox for mastitius last month (no I'm not breast feeding) and I thought I would die the herx was so awful. I sleeped for four days straight.
i don't know how ya'll take so many abx. Even with just one a month it is all I can do to work--I go to bed at 800pm every night and would go earlier if my kids would let me.
I was taking art but stopped so I can have enough energy to give my child a good birthday party. I love the artimisinin--I really think it GETs the bug.
Now that I have stopped the art I woke up this morning and my pjs were soaked around my head and neck from sweat. Can Babs become resistant to art?
Will you write more about Questran/CSM/Cholestyramine? Are these herbs/suppliments or something the doc has to give you?
Great post--thanks for sharing.
L
Posts: 1171 | From Knoxville, TN US | Registered: Dec 2004
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Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
Such an intensive treatment is only possible when level of Borrelia in the body is low. I did my herxing before and spent in bed whole weeks.
Questran removes toxin of Borrelia from body but please note that not in every infection there is a need for Questran. I think that Questran is advantageous when you have numbness of arms and legs, problems with sleep and problems with memory (preferebly all the symptoms are present together). These are often signs of toxin. Questran is likely not going to help for pain or fatigue.
I take Questran at least an hour after medications and at least two hours before any medications. I take it on empty stomach and soon after follow with tablespoon of oil or a meal containg vegetables and fat. Fryed egg is also OK. I found out that whole grain products and milk products deactivate Questran.
I give all the details because I know that many LLMDs actually read this board in search for treatment ideas.
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Sue vG
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posted
Areneli,
Thank you for this inspirational post! Keep us posted on your continued progress. I'll be looking into Questran next.
posted
Thanks for sharing the encouraging news Areneli. We both came to this board around the same time and I've always found your posts insightful & interesting. Keep them coming.
I'm amazed you can tolerate so many drugs. I'm making progress too but am only taking Plaquenil & Biaxin (and primal defense, milk thistle & fish oil). Did you come up with your combination of drugs or did your Dr?
hatsnscarfs
Posts: 956 | From MA | Registered: Nov 2004
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riversinger
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posted
quote:Originally posted by Areneli: Questran is likely not going to help for pain or fatigue.
Arenelli,
I have been taking cholestyramine for 7 weeks now, and the primary symptom it has helped me with has been very bad pain. Things have changed so much that I first cut my opiod use in half, and now I am considering weaning off completely. And I was at a very high dose this past winter. Next I will start weaning off the antieplileptics I take for migraines. This is pain I have struggled with for years!!!
Looks to me like it can help a wide variety of issues.
Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
riversinger, What kind of pain you are talking about? Could you elaborate? I am puzzled about this pain as I don't see a feasable mechanism.
hatsnscarfs, This is my final combination of drugs but based on wisdom and experience of many people on this board and some doctors.
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riversinger
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Member # 4851
posted
I had two kinds of pain going on. Severe migraines, the kind where you just want to hide, and vision gets blurred and there is nausea. These were under control with the antiepileptics, but still tended to escalate every month with hormonal swings. That seems to be fading out. I'm hoping that I will be able to start weaning off the Topamax.
The other pain was allover, neurologic pain. Burning pain that followed the nervous system. Worst in my head and neck, with escalation would pour down my back and out my arms and legs. I tend to have achey, fluelike pain constantly as well.
Dr. S, who pioneered the use of the CSM, says it makes perfect sense. The neurotoxins damage the hormone MSH (melanocyte stimulating hormone). MSH controls the body's production of endorphins, among many other things. Without the endorphins, pain rages out of control. For me, he said that taking opiods was really just hormone replacement therapy.
Now, with the CSM, it seesm the pressure is off, and things are recovering. I have not had my MSH retested, because the doctor said it takes a few months to recover. The first test showed it to be so low it was unmeasureable.
I am also going to start treatment for an antibiotic resistent staph colonization that Dr. S says also damages MSH production. But in the meantime, I am very pleased with the improvement in my pain levels, even if nothing else gets better!
If you want to understand more about how all this works, I highly recommend the new book Mold Warriors. Dr. S explains all the details of what happens in the body as the biotoxins impact the functions of cytokines and hormones, and how to correct them.
posted
I agree with starting out slow especially if you have had Lyme and co-infections for over 1 year. Soemtimes the immune system can over react to too much meds. I had this situation just recently in June when an aggressive LLMD gave me 5 differnt drugs for Lyme and co-infections. I herxed so bad that I wound up in ER thinking I had sepsis. I have had Lyme for 16 years plus, and was very functional for many years maintaining on low doses of doxy, but started feeling symptoms for 1 year that were not like any I had before. I may have been re-infected, (positive IGM only) or Bart or Babs became opportunistic. I never knew about Bart until I visited LLMD, but none of the meds I received would help Bart at all with the exception of possibly one. It wasnt until I stopped the other meds and went back to high dose doxy that realized what symptoms were most troublesome, and they turned out to be Bart related about 60% of them. I added bart treament and improved dramatically in 6 weeks without any real serious herxing. Next I will add a cyst buster antibiotic. May or may not also add plaquenol. I have been diagnosed in the past with Babs, had treatment and dont have sweats or symptoms anymore, so I was toxing myself with Mepron and Ketek initially when i didnt really need the Mepron. Slow and steady wins the race. I was told this by another Lymie who posts here and it is true. I feel it is best to get aggressive once co-infections have been addressed, then the Lyme is much easier to handle and you dont have confusion as to what is Bart, Babs, Lyme, yeast yadda yadda. I also just FYI have been on numerous supplements provided by my LLMD that have helped tremendously to make my body more alkaline to aide recovery and boost immune response and how antibiotics work. Plaquenol is supposed to help the body become more alkalaine I hear to boost antibiotic, but I did take it before my supplements and did feel like the antibiotic was more effective, but the herx was too much for me. I also was told it would help herx, but it did squat for me in that department as my herxes were neuro and I feel plaq may be better suited for Lyme arthritus. (Just my opinion) I use Green Frog (greenfrog.com) and make a shake in the morning. Take Coq10, lots of B, C, adrenal support, a multi in addition, and I have seen dramatic improvement in short time.
Thanks for your post, as I in the same opinion as you. I know nothing about questran, but will also be discussing it with my LLMD for the future and hope that one day can stop antibiotics altogether and stay symptom free.
Posts: 38 | From New York | Registered: Jul 2005
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Areneli
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posted
riversinger, Thanks for your input. I haven't experienced any pain relief from questran and I used to have a lot of pain. But based on your experience Questran can be apparently useful at least in some cases.
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riversinger
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posted
As with everything else, I think it depends on WHY we have a symptom, whether a protocol will bring relief. If pain is caused by active infection, CSM is unlikely to help. But if it is coming from something in the cascade of neurotoxins, then it could be very helpful.
By the time I used CSM, I had been taking heavy doses of antibiotic for two years, and my pain was INCREASING. Dr. S says that is due to being unable to clear the toxins out, even though the bacteria has died. So the levels continue to build up.
Perhaps you still need to treat the infection for longer, to get to the source of your pain. Maybe you need to look into the coagulase negative staph issue? That may be preventing further improvement? Whatever it is, I hope you find it. Pain is hard to live with. But it sounds like you are on a good track.
posted
Excellent to hear you are feeling so much better. There is hope!
Posts: 30 | From Tennessee | Registered: Sep 2005
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Areneli
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posted
After introducing Flagyl in place of Tini my pain level temporally went up. Currently, my pain level is the lowest I ever had since start of my treatment.
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posted
Thank you for giving us hope.
Posts: 449 | From Pasadena, CA, usa | Registered: Aug 2005
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Andie333
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Member # 7370
posted
Areneli, This was such a good thing for me to read tonight. I'm only 4 mos into treatment, and still have more bad days than good ones.
Overall, I'm improving, but it's hard for me to see it in myself...especially after days like today, when I'm basically down.
So thank you! And continued improvement...
Andie
Posts: 2549 | From never never land | Registered: May 2005
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Areneli
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posted
So far I have taken 6 months of ABX. I started treatment in January this year but shorly after had to take 3 months off due to Candida.
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You're a real winner, Areneli. Please keep posting your success story over and over, as you have a lot of positive energy and smart sensibility that shines through your posts. And hey, what were those abx again?
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