posted
Well, I have been symptomatic for almost 18 months and treating for over 10 months and, quite frankly, have not improved at all and, in some ways, seemed to have regressed, especially with the brain and cardiac stuff. I have often wondered and questioned whether or not lyme and co-infections are really my issue, but since I have so many bands positive, even positive by CDC standards, I guess that I do. I have been through tons of orals, two different IVs (just started doxy four days ago) and am on my second LLMD. I have followed their protocols to the letter and my current LLMD is highly recommended here and is said to have gotten many folks totally well.
I have three children, the oldest of which will be a high school senior next year and has aspirations of attending medical school after college. As most of you do, I have and continue to pour thousands of dollars down what I am starting to consider the "lyme toilet" on monthly LLMD appointments, tests, meds and supplements.
My question is...is it all really worth it? I am starting to doubt that I will ever get better and functional again, to even close to my pre-lyme state. It seems that there are thousands of members here, but only a very small handful that get/got 100% better (TF and a few others), or even close. I have three kids and it seems like the money that I am spending which may end up doing absolutely nothing, like it has been so far, could be better used elsewhere, like saving for my kids' college expenses, family expenses, etc.
Sorry to be rambling on, but I guess that I am looking for a little REALISTIC hope that it can happen. I am about a hair away from pulling the plug on all treatment, and just putting the money where it should be going.
~Tri
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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I went through my first treatment over 8yrs ago. I went through 2 yrs of strong IV's and all drugs. My daughters were a senior and jr. in HS. It was a tough time, as I was so sick and always in the ER or hospital.
But I feel, because of those strong drugs, I then got 100% better and lived pretty symptom free for those 8yrs. I always knew to keep up on my mag. and B12 and to always get my rest. But lived pretty normal, moving across the States and doing whatever I wanted to.
Now a year and a half ago... had a very stressful event that I feel brought this all on again. (no new bite). I'm in a lower type of treatment now.. but still living pretty normal (for us normal).
You do have to do what you feel is best for your life. But just know... after all those strong drugs, and all the side effects (lost gallbladder etc) and all the money in debt... it was worth it for me.
Best wishes. Hang in there.. your kids and family want you better too...they realize you want the best for them.
-------------------- Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again! Posts: 941 | From AZ-MT | Registered: Oct 2004
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
My experience is much like yours TRI. I know that I have this illness...9 bands IgM all +, ++, +++.....CDC positive, a few IgG bands.
I have treated heavily for 3 1/2 years. NEVER have gotten back to baseline (before first abx).
I do have co-infections and CPN as well.
I decided to stop antibiotics after my PICC was pulled at the beginning of December. So far, I feel better than i did on antibiotics, though still not back to baseline.
What i have done in the last few months is Humaworm and a treatment called Medsonix. After Medsonix, it seems that I am more able to tolerate stimulation (I can handle stores). I still cannot drive .
I feel more capable of movement...light exercise.
For me this is huge, as i have been, at times, bedbound and certainly homebound for most of 3 1/2 years. This is due to all neuro sx...lightheaded, stimulation, balance, and severe head pain/pressure..heart sx..
this is not to say that antibiotics do not work, they do!! but for some of us, for whatever reason, we become worse....probably toxins?
I am working at building up my body..detoxing..whatever. for me, it is a welcome break. I may go back on abx, but am leaning towards a natural, herbal route.
I know that I will never be an athlete again, but hope to be a functioning human being....
Just sharing my experience. Hope that it helps you somehow.
feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
It took me a year and a half to begin to notice any improvement at all. Now been treating for 3 years and am way better than when I started.
And yes, I know ppl that are just as well off after treatment as they were before LD struck.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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Don't give up. For me, it's been 3 years and a ridiculous amount of $$ since I got sick. And it has been completely worth it.
It took 2 years of high dose oral ABX before I noticed ANY significant and sustainable improvement in my most troubling symptoms.
I am not done yet, but I am now off ABX and in the last 6 weeks I have felt like myself once again, for the first time since this started.
I often think of Jordan in UOS and how happy he was at the end of the film, talking about getting his life and physical ability back.
I can finally feel myself approaching this point. I wake up in the morning smiling and go to bed smiling.
Even if I relapse, at least I now know for sure it's possible for me to recover completely.
Keep up your determination.
Posts: 41 | From Victoria, BC Canada | Registered: Jul 2009
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beths
Frequent Contributor (1K+ posts)
Member # 18864
posted
I was on abx for 3 years-pulsed the last year and was back to 100%. Unfortunately, after 6 months totally off, I relapsed, and now am feeling pretty awful. But I know I can get to 100% again, hopefully in a shorter amount of time.
I will probably stay on herbs for a looong time after I get back to baseline.
Pulsing really helps..clears out the toxins.
Posts: 1276 | From maryland | Registered: Jan 2009
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posted
Aggressive treating of parasites turned the corner for me. Parasites are the hiding places for the rest of the crew. Once you start breaking them down the bacteria are exposed to the abx treatments. I was bed ridden and suffered from temporary paralazis. Am now walking a mile everyday.
Posts: 160 | From Mid-east USA | Registered: Jan 2010
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It is just so incredibly frustrating! I have felt ill/drugged/drunk 24/7 for a year and a half with major brain and cardiac involvement (coded in the ER, a pacemaker was recommended, couldn't do simple math, remember my friends' names, etc.). Of all of the things that I have, my brain issues are the most problematic...that is what is preventing me from functioning...I never really had much joint pain or fatigue...my issues are strictly neuro...and presented as cardiac initially.I just need to know that there is a strong chance that it will not be permanent and that I will hopefully get my life back!
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
Trying to live normal, but how w hen you don't even feel like u know who you are. M on herbals since sept. After I did Iv 3x and went into remission. The 4th time sent me into a downward spiral can't get out of. Focused last night and slept well, the first time in months. Woke up focused but as the day went on got worse. Sleep was peaceful and all in perspective. The stability never stays and put back in he'll again. Doing my herbal teas, I'm so lost. Remission was great, how much life can upack in a day? Now just wish everything was over. I miss the clear head of just seeing friends, shop, normal things that normal people do, insteadvof living like dead. What do u do when youre watching life. Under a lot of stress taking care of a sick dad, my husband and son are self sufficient, but would lovevto be back in the world before I crashed again. Where is justice in this. Sorry, just so insane.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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chiquita incognita
Unregistered
posted
Here's another slice of the pie, only for whatever it is worth. I think everybody should go with whatever they feel most comfy with FYI, so this is not a "plug" but instead, only information based on which people can make their own decisions, knowing whichever treatment modality is best, *for them*.
I have had the lyme infection in my body, chronically undiagnosed/misdiagnosed, for an excess of 30 years. I did a herbal regimen recommended by my LLMD which was formulated by an ND (naturopathic doc) and the results were pretty good. *Much* reduced neurological symptoms (with more layers of the onion to be peeled, but about half of them gone) in about 6 months. HErx's existed but were not severe, I could tolerate them and most of the time, I could function and carry on. So it was dramatic progress but with a fairly non-dramatic road along the way.
I read another ND on the web stating that he would never recommend abx for lyme, that many of the "herx's" really are a mix of die-off with *side effects* from the drugs and that he has seen too many people get well with naturopathics alone, who also had fewer and less pronounced herx's than with the abx. He specializes in infectious diseases/microbes of various kinds and apparently people come from around the country to see him. So while his is one medical opinion on the web, I thought that his input also might be worth noting. Of course professional opinions will vary, and that is always the case. The proof is in the pudding: Progress is key.
FYI my own LLMD said that he thought the herbs had done the trick really well but that we reached a point that we needed to "go deeper" wtih the abx, and that the herbs wouldn't do it anymore. So there's another side of the aisle to weigh in for you.
I had the most horrible experience in my life with the bactrim and will NEVER take it again. I am inclined to go back on the herbs, see how progress goes and then re-evaluate later about "going deeper" with abx *if* the progress doesn't seem to be happening.
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Ditto as to what dyna is saying about the parasites. VERY imoortant to treat them.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
Yes people do completely recover. But most of us that hang out on boards are like me chronic with a list of bad symptoms.
When people get better they often stop posting because they are back to living life. So don't lose hope.
lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
Yes, people do get better, and I am one of them. I still hang around here to pay it forward for all the help I got here.
I went undxd for 10 yrs. I first got sick in 1994 when I was in my 20's. And I feel better today, 17 yrs later, than I did then. I've been off abx for 6 yrs now.
I would have spent everything I had to get better and know that had I not gotten treatment, I'd be dead now.
I do want to add though - abx are not the end all cure all. I truly believe they are only one part of the picture. Bacteria need to be killed off, yes, but there is so much more that needs to be addressed in order to get well. Lyme is typically the straw that broke the camel's back.
Please don't lose hope. There is life after Lyme.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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chiquita incognita
Unregistered
posted
Hello friends I just wanted to echo what somebody else above said (sorry, I am not retaining names even long enough to post! That's ridiculous, but it' s part of my symptoms, so I do not mean to be impersonal!)
That those who have gotten well do not post because they are back to living life. It really does help to hear from those who have recovered, eh?
I am on the beginning journey with my lyme stuff, but to encourage people here will share that I recovered---in full----from environmental illness which is supposed to be just as hard to conquer. It used to be that if cars went by, if I read the newspaper, walked into a clothing store and inhaled the fabric dyes...instantly I would have MS-like symptoms, numbing of limbs, space-out, tongue-tied and speech difficulty, etc. That is absolutely and completely gone now, and has been for more than 20 years! Yes we can recover and yes there is hope.
Also, about lyme progress, let me share to encourage others that indeed I Have seen good progress on herbal regimens. Again I am newly into this journey, but for six months so far so good. No more fingers curling up into the palm of my hand and dead asleep. They still do tingle, but curling up is a thing of the past. I have no more space-out plus the symptoms above and now more foot dragging, etc that all had me misdiagnosed as having transient strokes. It's all so much better now after only six months! Herx's did exist but were short-lived, only 1 or 2 days at a time, and mild enough that I could carry right on, only with a few exceptions when dizziness got to be too much. For the rest, I was actually completely herx free, yet progress continued!
I am not trying to "plug" or "sell" anybody but am merely sharing my own experience. But for anybody who is interested, a naturopath on the web whose page I read, shared that he has seen people get well from lyme without abx and that they have much more subtle/fewer herx's. And they recover, in full. He specializes in lyme and other infections and people come to him from around the country. I looked for the link and couldn't find it again, sorry. If anybody is interested, feel free to PM me and I will be happy to look again and give it to you. My own LLMD is very well known FYI and he is such a knowldegeable doc, integrating herbal and mainstream therapies alongside each other. Again with PMs I am happy to share info. But not here in public, due to forum policy. (My doc said it is okay to give out his info to people who ask, though rest assured he is plenty busy!!)
Best wishes to all and I hope this helps.
FYI Herbs work in ways that abx do not. I learned in herbalism training that mainstream abx scramble the DNA of the bug and that is why they mutate to become stronger later on. Herbs all work differently, depending on each individual one, so this is generic info> the gyst of it is that they don't cause the bugs to adapt and can kill them off without creating a more virulent strain. Some wash bugs away that cling to surfaces (Ie cranberry does this with E Coli clinging to the bladder), others break down the bacterium's cell wall. Many herbs out there stimulate T and B cell production which are immune cells. So this asks the body to beef up to do the task of gobbling up the bugs by its own healing powers. Herbs containing mucillage (a gel-like substance round richly in marshmallow root, also in mullein and fenugreek and flax seed, slippery elm) will aid the herbs' abilities to slide into muscles to target the lyme, offered a ND when I talked with her by phone. That made a lot of sense to me. So all that is meant to say, for anybody who is interested, that there is a lot of hope out there.
I do not know my lyme infections/co-infections and lyme-specific herbs enough to comment. I don't want to "fake it" when it comes to human health, that would be unethical. So I am posting generically just to offer hope. Yes the herbs can work, but you need the right combinations of them and you also need a formula that works for your particular body's constitution. That's why there are many formulas out there. Keep trying until you find the right one, *for you* and with the right professional guidance (never do this alone) progress is indeed possible!
For another side of the aisle and balanced presentation, my own LLMD said that the herbs had worked up to a point but that ABX would be necessary to "go deeper" as he said. Then again you have the naturopath's experience/info above. Opinions always vary and the proof is in the pudding: Progress is what counts most of alL!
Best wishes and to your continued recovery, hope and good health, everybody! :-) Best wishes, CI
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Thanks for your post. Posts like this are like a life line to people who have been sick for a long time and are getting treatment fatigue.
Posts: 699 | From confusion | Registered: Jan 2011
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chiquita incognita
Unregistered
posted
PS Triathletelymie I feel your pain and want you to know that I share your experience. I too had to stop my professional work (not herbalism, something else) which is my lifes' deepest love.
I truly do hold the hope that with the *right* treatment, *For us!* that we can and will recover.
I think that in addition to targeting the bugs, to strengthen immunity is key. This is a subject which would be great to start, as a discussion thread. I will post about this, stay tuned. It would be cool to have this as a major theme. I think it is a mistake to *only* kill off the bugs...what about preparing the body to deal better with die-off symptoms? What about strengthening immunity so the body can itself heal from the infection? THEN to have abx on top of that...now wouldn' t that be the hottest combination!
FYI balancing adrenal and thyroid glands may be part of the key. The man who healed me of environmental illness was (passed on) a med school graduate, and nutritionist/herbalist. He had a strategy which brought people out of EI in six months, where most other docs specializing in this usually take 18 or more. And they healed so beautifully, too. What were his secrets?
A) Chemical avoidance in one's life, like the plague. Common household detergents, replace with non-toxics. This rests the liver and immune systems. Chemicals can inhibit immunity like nothing else, as can heavy metals. Get amalgams drilled out SAFELY, and avoid aluminum-containing deodorants, pots, pans, etc.
B) Balance thyroid and adrenal glands. if they are "down" then immunity will be affected. Beef them up to the proper balance (not over-amped and not under-amped) and immunity will bounce back. Then the body can better heal itself.
See Richard Shames, MD's book Thyroid Power www.thyroidpower.com he says that mainstream thyroid test fail miserably in accuracy. He offers diagnostic and other information, but makes it a very lay-friendly read. Check it out.
C) Cleanse liver with appropriate herbs
D) Tonify (strengthen) immune function with herbs that specifically do this. I will post about this later, offering science-based links for further reading. Stay tuned but meanwhile, what comes to mind right away are the herbs astragalus, medicinal mushrooms (shiitake, maitake and turkey tail), schizandra as liver/endocrine-balancing herb, and more later...
best wishes to all and lots of hope and recovery!
The above information has not been evaluated by the FDA and does not diagnose, cure or prevent any disease. This does not substitute for a physician's personalized advice. Drugs and herbs may interact, talk with your doctor. Do not self-treat and do not self-diagnose, this can be misleading or even dangerous at times. Always tell your doctor about nutrient/herb supplements you are taking to avoid misdiagnoses, hidden diagnoses and interactions. Be well and happy! :-)
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
Any time Stillwater.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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You should really take a stronger look at the pacemaker option. If your heart is not functioning properly, not enough blood (oxygen) gets to your brain and causes a lot of the symptoms you have.
I feel that it is really your ticket. I haven't felt any improvement in 6 months either, so there must be something else effecting our health. You've had extensive treatment, as have I, we would have felt some improvement by now. We need to keep looking.
Posts: 306 | From NY | Registered: Sep 2010
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ConnieMc
Frequent Contributor (1K+ posts)
Member # 191
posted
I was deathly ill and misdiagnosed for 3 years
before treatment. Docs laughed at the idea of
Lyme disease, even though I became ill after tick
attachments. Eventually I found a doc who did
take it seriously.
I got my life back through treatment, although it
was a long, hard road. I was on and off IV for
a year and took oral meds for several years. I
had many ups and downs. Once we were satisfied
that we had gotten the bacteria levels down, I
went though nutritional testing and took gobs of
supplements to replenish what the bacteria and
the drugs had stripped from my body.
All these years later, I am still doing well. I
consider myself one of the lucky ones.
Do pay attention to nutrition and consider
getting nutritional testing through a physician
who believes in integrative care. I have been
able to keep the beast at bay only because I take
good care of myself, exercising 3-4 times a week
(weights and cardio), take various supplements,
vitamins, keep stress down, and get good quality
sleep. If I start letting my guard down, I have
noted that I begin to feel horrible.
So it can be done and I wish you the best of
luck! Hang in there for as long as it takes.
Posts: 2275 | From NC | Registered: Oct 2000
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gwb
Frequent Contributor (1K+ posts)
Member # 7273
posted
quote:Originally posted by dyna3495: Aggressive treating of parasites turned the corner for me. Parasites are the hiding places for the rest of the crew. Once you start breaking them down the bacteria are exposed to the abx treatments. I was bed ridden and suffered from temporary paralazis. Am now walking a mile everyday.
What did you do specifically to rid yourself of parasites?
posted
Hi Gary May I recommend that you read about grapefruit seed extract and black walnut, on these two sites (where the information is extremely trustworthy. You can also do a subject search):
www.healthy.net do a subject search and also see the Herbal Medicine Center
www.christopherhobbs.com see the online herbal prescriber database. You can look up herbs individually or ailments.
posted
PS Gary Also, in Paul Pitchford's book Healing with Whole Foods, he has a section about how to rid oneself of parasites with diet and herbs.
You could also consult Linda Rector Page, ND's book Healthy Healing. It's a reference book in most healthfood stores around the country.
SOur and bitter flavors are key to killing off the parasites. Artemesinin could help a lot FYI because of its bitter nature. Wormwood is even better but it does carry some cautions posted previously on another thread. The thujone in it can be toxic, causing hallucinations, writes ethnopharmacist Elizabeth Williamson in her book Potters Herbal Cyclopedia (mentions herbal studies, constituents, etc great book!) It's okay in moderation, and the watery parts are less toxic than the essential oil, writes David Hoffmann in his book Medical Herbalism.
The above information has not been evaluated by the FDA and does not diagnose, cure or prevent any disease. Drugs and herbs may interact, talk with your doctor.
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D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
My wife is 99% normal, and I have been the only person who has treated her. I am not a doctor nor do I have any medical back round. But I do live in a part of the US that still largely does things for themselves, as good help is not always available. The idea of solving our own problems is not a foreign concept, it is how we do most things.
We have used some herbals which helped to a degree, and have tried various alternative treatments, all of which had an effect.
We eventually settled on Rife type frequency treatments, because it worked for her, and she simply cannot tolerate oral treatments for any amount of time. That severely limits our options.
It has cost us money also, but between all of it, we have not spent $10,000.00 in six years time. It would have been less except there was a big learning curve involved.
People do get better, but I am not going to pretend everyone gets to symptom free. You have to find what works for you specifically, and go with it.
It does not matter what type of treatment it is, as long as it works in your case. I have yet to find any treatment of any kind that always works for everyone. It does not even matter what disease you are treating, nothing works for everybody. We are different in physiology.
I probably will not post here forever either. I have Crohn's Disease myself, and find it hard to post on a Crohn's forum when I have virtually no symptoms of the disease. You do not fit in any longer, and it is like being an outsider.
Many have improved, and no longer need the support of this forum. It is the hard cases that are remaining, for the most part, or new people looking for answers.
Nothing is impossible, but it can be very difficult. Lyme is more difficult than any other disease I have encountered. Crohn's was a walk in the park by comparison.
Good Luck to you.
Dan
Posts: 2919 | From Minnesota | Registered: Aug 2006
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posted
I am symptom-free and back to my pre-Lyme state.
I must say, I'm always paranoid that it's Lyme ..... I'll have a busy week and will be tired, so I have to ask my husband and he'll assure me that's normal.
I am pain-free, my head is clear, my digestion is finally back to normal (that took at least a year after infections were gone), etc.
The only time I have any issues is when my ferritin gets low (due to heavy menstruation and my previously poor digestion/absorption). As long as I supplement iron, I feel good. I have had this issue since puberty.
I still test as having heavy metals and fungi, but I think that's improving the longer I'm well.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
I am about 70% better since I started my treatment and I went untreated for over 5 years. For what it is worth, I feel that it is necessary to attack this illness from all angles- which most of us do. I do know people who did not respond well to antibiotics, but rebounded from this disease by taking herbs/alternative medicines. I have forgotten what it is like to be normal and every break I get revolves around appointments, etc. All I can say is do not give up and continue to search for a treatment that might work for you. My LLMD is seeing results with spreading out the pulsing protocol. He believes that three weeks on three weeks off might be the ticket-that's three weeks w/o any meds. I might take that step in three months when going after babs. Please don't throw in the towel because people do beat this! climber
Posts: 108 | From Connecticut | Registered: Jun 2010
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posted
TAL... Have you treated babesia?? (sorry if I missed it)
I was sick with Lyme for most of my life and resigned to staying that way. Didn't know I HAD LYME since I was misdiagnosed with FM for many years.
Took me 4 yrs of Lyme and babesia treatment to get me to where I am now. I still battle yeast, but am overall very pleased with how I'm doing.
I walk more than a mile 3 times a week (would walk more but I get bored on the track!) and also work 12-14 minutes on an ergonomic machine 3 times a week. I do weights also.
It takes a good doctor to get you well.. so make sure you have one!! Best of luck in your recovery!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Yes...I have treated Babs...with mepron for around two months, as I recall. I was also negative for it with Igenex and never seemed to have many symptoms of it like night sweats, etc.
I have also treated for Bart too...with rifampin and cipro/bactrim.
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Yes....you CAN get better if you've had Lyme! I had a really good run of VERY good health. Dec 09-about mid Jan 2011, I was doing extremely well. I honestly think that begining running again sorta started hurting my immune system. I was running 7 min miles....3-5 miles 4 to 5 days per week...lately here, not feeling so hot. However, I also have been working 12 hr night shift (7p-7a) for the past 10 months.
I used colloidal silver (Utopia, currently am trying Mesosilver), did about 1/4 cup per day. And I believe the Erchonia cold laser was my ticket to regaining my health. I have not been lasered for Lyme since 12/2009. The practitioner will only laser if you test pos with his nosodes even though some have tested pos with Igenex, but neg with the nosodes.
I am currently trying to purchase my own laser (found one used that I will be looking at next week).
The Erchonia laser uses frequencies (like a rife machine) and it also uses photons, in the 635 nm wavelength.
I swear this thing helped me SO much with my anxiety as well. I used to not even be able to sit at the dentist for a cleaning, and last August sat in the chair while the dentist pulled every wisdom tooth out of my mouth with no anti anxiety medication. He had alot of difficulty with one, was telling me he had to drill out some of my jaw bone, ect...no anxiety. It was awesome!
I am thankful for EVERY SINGLE day I have had with good health this past 14 months and I know that I will be back up there soon especially if I can purchase that laser soon.
I am also planning to quit work (am a single mom of 3 kids) to get my Family Nurse Practitioner degree to treat Lyme patients. I am a Registered Nurse right now, and I cannot wait to start school again! However this little relapse thing I have going on isn't cool, especially when I have enjoyed such GOOD health! I got sick back in 1996 and honestly these past 14 months I have felt better than I have since before getting sick. I had honestly forgotten what it felt like to wake up in the morning and not have that terrible Lyme feeling and how the day is spent just getting by and feeling like you are dying.
I can't wait to learn all I can about treating Lyme and someday starting my own practice.
So hang in there, I know what it's like to wonder if you will ever turn the corner. Gosh even as I started to get better, I didn't want to believe it. I still am better than I was...just having swallowing problems again, night sweats, low grade temp, lots of fatigue...as long as I can keep the anxiety away it will be tolerable...adding panic attacks to that mix will all but knock me out!
posted
YEA Ocean! Good job! We need you as an NP!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
I think it needs to be said that those who have access to the best doctors and treatments and have the financial resources are usually the ones to have the best shot at getting better. It's sad but it's true.
Many of us who are struggling on disability pensions, unempoyed, or low income will most likely take a very long time to ever recover if at all.
Bartonella henselae 1:100 Posts: 2027 | From British Columbia | Registered: Jun 2010
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Hi Triathlete, maybe you can look at other options, such as:
1) Antifungals. You could try the diflucan/penicillin protocol. 2) Heavy metal chelation 3) Hyperbaric oxygen 4) Antivirals (famvir, valcyte)
Posts: 2276 | From united states | Registered: Jun 2004
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GiGi
Frequent Contributor (5K+ posts)
Member # 259
Wondering whether it really takes thousands to kill a parasite. I doubt it.
Take care.
Posts: 9834 | From Washington State | Registered: Oct 2000
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GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
I don't think we will ever be the same person that we were before Lyme. To our benefit.
Posts: 9834 | From Washington State | Registered: Oct 2000
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lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
I think it's fair to say many of us have paid thousands to get this illness under control. I personally had to re-mortgage my house.
posted
I guess that it is difficult to put a price on your health. But, it would be more palatable, if I knew that it wasn't a gamble...that good would come out of it and it isn't just all down that big 'ol lyme toilet!
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Triathlete, if you have not improved at all on ten months of treatment, you are treating the wrong thing or using the wrong treatment. You clearly have lyme, but either the drugs have not addressed it at all (strange), it's a coinfection that is making you sick (bartonella or babesia?), a virus (ticks might well transmit viruses), or you need adjunctive therapies like chelation and hyperbaric oxygen (to repeat myself).
Maybe you need a more integrative physician.
Posts: 2276 | From united states | Registered: Jun 2004
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Quite frankly, that is why I posted this. I am at a real loss...I have wondered if lyme is really my problem, but, when you see my positive bands...7 of them, even enough to be CDC positive, it's not really questionable. I am on my second LLMD, have done numerous orals, done two different IV meds and have treated both babesia and bartonella. Nothing seems to be working for me.
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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posted
Tutu - No, no reaction at all...I have never herxed, I don't think, and don't improve...hence my intense frustration! But...although I know that this doesn't mean much...I tested negative for it through Igenex...and don't really have the "typical" babs symptoms...night sweats, etc.
Perhaps bart is more of my problem? I treated it with rifampin for a month several months ago...and cipro/bactrim recently...no real reaction to those either...but...I think with my severe neuro involvement, that may be more of my problem...
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
I agree, parasites. I know we've talked about this before.
Run it by the doc and see if you can do a round of Humaworm. Around $35 I think.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
Dr. B's guidelines state the following for long term chronic infections that don't respond to antibiotics:
In patients who have chronic Lyme, who do not fully respond to antibiotics, one must search for an explanation. In many cases, these patients are found to have pituitary insufficiency of varying degrees.
The abnormalities may be extremely subtle, and provocative testing must be done for full diagnosis. Persistent fatigue, limited stamina, hypotension, and loss of libido suggest this possibility.
Bartonella henselae 1:100 Posts: 2027 | From British Columbia | Registered: Jun 2010
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
sorry i couldn't read all of above
i was in bed with neuro pain
3 years of high dose orals got me well enough to teach 10 more years to retirement and thru kids school years
i'll never be 100% i'm sure but i feel its worth being alive
i managed to get the kids launched
i have found things i can enjoy in life-including grand kids...altho my empty nest years are much different than i planned
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Triathlete, I would consider viruses in the hhv6 family and possibly xmrv but you really seem very active (in terms of not looking like an xmrv patient at all). Have you had titers for the herpes family viruses tested?
I would also consider antifungals. Have you tried diflucan or sporonox?
In addition, it's possible that your system reacts very strongly to small amounts of borrelia, with a cytokine flood that is responsible for symptoms. You never tried hyperbaric oxygen, correct? I'd try a mild chamber first--Joseph D'Amato, a chiropractor in Bronx, has a chamber and charges very little for its use. Ask for an hour at full pressure. See if that lifts your brain fog or neuro symptoms. You may have a good LLMD but not herxing on any treatments nor responding means looking for other options.
You might try Ritchie Shoemaker in Maryland--he treats mold issues, and sometimes those get activated with lyme and are hidden, but cause a lot of symptoms.
Posts: 2276 | From united states | Registered: Jun 2004
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
triathlete, 2 months is not long enough to get rid of babesia. It is my understanding that it takes a minimum of 5 months for the infected red blood cells to be totally replaced, so most people take Mepron with zithro for at least six months.
Babesia causes a lot of neuro and emotional problems including depression and anxiety. Talk more about your symptoms. You may be missing something - treating the wrong infection.
That has happened several times for me. I treated lyme, felt better and then got much worse. I upped my abx and changed abx thinking the lyme was becoming resistant. I also thought the increased symptoms were a herx.
It turned out to be an entirely different infections taking over which the abx I was taking did not affect. This is very common.
I understand your despair. I feel the same way much of the time. It is such a struggle. But I have been much better and I am not extremely sick now. I can function. Most people do not even know that I am sick.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
Pacemakers can be implanted on a temporary basis for lyme disease and removed when no longer needed. Google heart block - lyme disease.
Posts: 44 | From New York | Registered: Feb 2011
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posted
Farther back in the posts someone mentioned chlamydia pneumoniae. I have a diagnosis of MS (not on treatment for it). I tested positive for CPN at VIP Lab and was successully treated with doxy, zithromax 3 x weekly and tinidazole. I now have lyme to deal with.
Posts: 44 | From New York | Registered: Feb 2011
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posted
Farther back in the posts someone mentioned chlamydia pneumoniae. I have a diagnosis of MS (not on treatment for it). I tested positive for CPN at VIP Lab and was successully treated with doxy, zithromax 3 x weekly and tinidazole. I now have lyme to deal with.
Posts: 44 | From New York | Registered: Feb 2011
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posted
triathletelymie, some of my neuro symptoms lifted after 8 months of treatment. My most persistent symptom was physiological dysfunction and I don't know if that was neurological or not. But it only began to improve after 2 years and 4 months of treatment. Before then I noticed no improvement at all. I just kept holding on to the vision of being well. I am not there yet, but it finally seems possible. Stay resolute.
Posts: 41 | From Victoria, BC Canada | Registered: Jul 2009
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posted
The CPN was PCR. The specialty lab is Viral Immune Pathologies. They test intracellular bacteria and viruses.
Anyone who is not getting better, or even if you are, research Prof. Garth L. Nicholson. He is a microbiologist and researcher, as well as his wife.
He had a daughter in the Gulf War who came back very sick, like many of the other Gulf War Vets.
He had a research lab at his disposal and set out to find out what was wrong with his daughter. She had a mycoplasma infection, intracellular like chlamydia pneumoniae. So no regular bloodwork can detect it. That is what all of the Gulf War Vets are suffering from.
He has authored much on the topic of these intracellular infections causing all of the horrible diseases people are suffering from today, MS, ALS, chronic fatigue, fibromyalgia, the list goes on and on.
Beware looking at his work as often you will get a pop-up asking if you trust this website, if not don't open it. I opened them all, always, and eventually my computer was infected with millions of viruses. It cost me over $200. to get it fixed.
If I can help anyone, I will be glad to. So glad I found this forum. It is wonderful.
Posts: 44 | From New York | Registered: Feb 2011
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posted
thanks suzy. I tested positive for cpn through labcorp antibodies. after 3 months of doxy and 3 months of levaquin, id like to test it again. I know prof Nicholson recommends testing via PCR through VIP, but I think this is less sensitive than antibodies (although a positive PCR means more than a positive antibodies).
-------------------- We will win Posts: 135 | From California | Registered: Jul 2010
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posted
I started treatment immediately after infection and it has taken almost three years to get to the point where I finally feel human again. I had severe neurological involvement. I remember the first glimmers of hope would be snuffed out by the never ending pain of this illness and I would have loved to just slip away but the love of my life kept a firm grip on me and grounded me as he watched me pour the $$$$ into the black hole. I'm sure that some of it was wasted but have no way of knowing what part was unnecessary. A trusted LLMD was essential and he told me from the start (after 8 months of treating with someone else) to allow at least 2 years to see results. I am currently off of ABX and am trying Banderol and Samento along with all my other support stuff. I may need to try pulsing ABX to keep the bacteria at bay and I am willing to do that forever if I have to to keep my brain working. I FEEL GREAT---- IT IS POSSIBLE--- HANG IN THERE!
Posts: 27 | From SW VA | Registered: Aug 2008
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
That's great utz.
I'm still treating, but am in the 90%'s most days. My brain is back, depersonalization and brain fog are gone, my brain is healing per my now Normal MRI.
Still have some mild symptoms I'm dealing with...but I can function, have fun, laugh, enjoy life, work, travel, be a father, husband, and otherwise live (except for taking 40 pills a day and having a lyme diet.)
Bcb
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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posted
Wow, utz! Thanks so much! I needed to read your post today.
It is just so incredibly frustrating, depressing and seemingly ENDLESS!!!!!
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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posted
Tri, While my symptoms are different from yours, I am also not very hopeful that I will ever return to my pre-Lyme state. I seem to have plateaued and seem to be cycling through various symptoms - When one symptom stops, another seems to take its place.
Very frustrating, I agree.
Posts: 100 | From USA | Registered: Sep 2010
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posted
I'll throw my hat into the ring... I am improving a lot--four years in best I know...still got a way to go
but it is so different when you can stabilize your mind and emotions and sustain improvements.
Maybe not measured day by day but over the long haul.
when mind and emotions were under full scale assualt I felt depersonalized. derealized and afloat in a never ending nightmare.
a combo of what others have said.
I got better for two years slowly (neuro - I was paralyzed waistdown and lost most bowel
and bladder control back then; legs still tingle and inflame and have numb patches but that's "all" on that.) I survived the onslaught of IV steroids at the get go...for the mystery symptoms.
then in the third year I got way way worse in different ways...same reason as others..undiagnosed coinfections came to foreground as lyme receded.
but I had already been detoxing and using Samento, Burbour and Cumanda, a slew of supplements, electrodermal testing and homeopathics.
third year was mentally and emotionally worse...bart/babs unbeknownst to me.
got a second bite/round of infections. found lymenet and found LLND
Now I am in fourth year and better than 2007! I really feel my mind, my hearing, my energy, a sense of hope and future coming back.
Acute symptoms are simmering down...herxing cycles are not as bad...I even had a few weeks that besides the remnant of the neuro in my legs and some anxiety ...felt almost normal...
I despaired of all that until about a month ago when the improvement sustained even through some mild herxing. My mind began clearing, memory
resturning, emotions climbing out of pits as the infections are being beat back. Abx, herbals, supplements, detox, EDT,
homeopathics, diet and so on...hammering from different directions and changing it up. Prayers.
Seriously wanted to die a year back. Could not see past the fog of the day, moment by moment. hope trickled away.
My short term memory and word retrieval was bad and I depend on my mind more than my body in many ways for work.
As for the is it financially worth it during the times you cannot see where it is going?
Resounding yes. Can you always tell whcih is the most cost to benefit in the things you try? No. Each thing I have found does something.
This disease out of pocket has cost tens of thousands and I have a modest income. No insurance...gave it up to pay for treatment.
I gutted savings, friends helped some, family helped some and somehow the boat is still afloat
even through times I did not know how to pay to keep the roof over my head that month and my car dying.
nightmare...worse than some and not as bad by far as others...
I do have to give credit to faith in God...except that as a resource got eaten away as my mental status slid into a pit. then it was just guilt all the time. Doom scenarios playing in the head.
but still all that is to say yes it is worth it in the frustrating periods...
to do what is in your power to do...and trust for things not within your power.
I do not mean passive trust although when your fatigue is a crushing ball and chain it feels
pretty passive even though there is a royal fight going on to stay in the game somewhere inside...
...these diseases bring you low...and it is a moment by moment fight to make it sometimes..no doubt...
but I have read many folks on here who are feeling improvement.
And DBergy said it well...often you feel "not part" as you feel much better and so those voices don't stick around.
while I would like to think I will give back,I try to do that now as I go...
I also look to a time when my life is not totally about lyme day by day.
we are changed by it..I agree. But we survive and live--to live our unique
lives...and I have other hopes (now returning when I truly thought that capacity was permanently gone)
for the remainder of my life besides being about lyme the rest of my life...even if I have to pay more attention to stay well. that's ok...to say the least.
I may have something different to say a month from now or a year but right now i can say that because I am that much better.
Learning to live in the now for better and worse...not in a future that has not yet arrived with whatever...nor in the past...
hard...but the lyme factor has required that of me.
sorry i am long winded.
-------------------- Not everything in life that can be counted counts and not every thing that counts can be counted...Albert Einstein Posts: 208 | From Northeast | Registered: Aug 2010
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lymeboy
Unregistered
posted
It has been a year and 2 months since I got diagnosed. I started an IV just about a year ago to the day. after IV I did IM. I felt for a while that I wasn't getting anywhere. I would Herx, and then be completely bedridden for a week. the herxes kept getting worse. I started treating for Bart in November. 3 weeks later I actually felt huge improvements. I had never been suicidal until all of these symptoms hit. The Bart really crushed my brain. It was almost like someone hit a switch. Now I am at the point of having more good days than bad. I have days where I feel 85-90%. I can't even believe how far I have come. But it has taken a year. And it will likely be another year or two. I'm guessing you're a Triathlete, so a good way to think of this treatment is a marathon. Not a sprint, or even a run. This is a long haul and it's gonna be filled with a lot of setbacks and disappointments. Someone on this board said this to me last year when I came here asking the same question and it really helped put things in perspective. It sucks. I hate it. But it isn't going to leave easy. we have to be diligent and disciplined and keep our heads up, even when our insides are begging us to quit. That is the disease talking, it's completely messed up and I never could have imagined a sickness like this.
I do believe I will beat it. I didn't 3 months ago. I will probably backslide a little, but I'm going to win in the end. You will too.
You could try changing docs, or if you have changed too many times, try sticking with one guy for a year. Or perhaps find a doc who has cured plenty of folks and go there. Just don't give up. That isn't you talking it is the disease. It's exhausting. Hang in there.
oh yes and if you haven't hit Bart or Babesia it could be time.
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My 5yo son is well after 2 years of treatment. He was initially only diagnosed with Lyme, and once we treated Babs and Bart, he started to improve.
Finally got to the lyme too, and used many meds... I strongly believe diet and nutrition were an important part of the equation. Sugar, and white refined foods feed the bad, please be sure you are eating whole foods, and lots of fruits/veggies...
We use a whole food supplement in capsule form called Juice Plus which gives us 17 different fruits and veggies a day along with the vineyard option which includes 8 grapes and berries. It's tested and approved by the NSF which regulates what professional athletes can take, testing for over 300 known contaminates so only the best nutritents get in you...
Good luck with your journey, I believe it can be done based on our own experience. My now 3yo is currently awaiting labwork b/c of a recent tick bite, and symptoms...so we may be back at it too.
-------------------- Mom of Five - two had lyme and coinfections - one had RMSF - Still hoping for broader awareness of tick junk in general medical practitioners. Posts: 79 | From Virginia | Registered: Jun 2008
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posted
Tri and everyone here...it is the struggle of and for our lives...no matter what age you are it is worth it to try new treatments/ protocols until you find sthg that works...and when that stops working...look for sthg else...I had had it with ABX after 2 years of various oral combos...I thought they were killing me and since I have stopped...3 months ago ...I feel so much better...my body no longer "screams" at me...no more herxes to deal with...I couldn't bear another one...so I guess I am one of those that does not tolerate ABX well...I felt lost and confused as to where to go next but after reading a lot I decided I wanted to try Dr. Klinghardt's protocol and so found ( thanks to folks here ) a practitioner who follows his protocol...I am a little rocky at this point in time ( must figure out why) but in general I feel better than I have in years and years of ABX and before when I had no idea why I was so sick...I am combining herbal supplements with a gluten free , dairy free diet and no sugars ( well...doing the best I can... ) some major detox and clearing my home of all offensive materials...all my aluminum pots and pans have been thrown out...I won't give them away since I don't want anyone else to use them ! I threw away all cosmetics and deoderants that contain aluminum and petroleum based ingredients...plastics...lots of them but not all...mostly utensils that come in contact with heat as that releases the PCP's etc...I don't use my microwave anymore and will give it away soon...I bought a reverse osmosis water filtration system to erradicate heavy metals in my drinking water...I will not go to a hair or nail salon anymore and subject myself to the chemicals in the hair dyes etc...this all may sound crazy but I really think these things add to the toxity load in our bodies and when we are fighting already an army of bugs it just adds extra work for our kidneys and liver etc to deal with, especially since I am detoxing too...why would I then resubject myself to more toxins...the only thing I am on the fence about is removing my silver amalgams...the removal sounds scarier than leaving them be ...I just don't know if I am healthy and strong enough to go through that at this point in time...only 1 month ago I thought I was dying...really...no drama here...and now I feel hopeful that by continuing to " clean up my act" along with the detox and natural bug killing I may indeed beat these darn bugs...I am willing to try almost anything to get well...but I think you need to give any treatment program enough time to let it work...a year at minimum I would say...well unless you have a major negative reaction to sthg...I agree with whoever said above that "one size does not fit all"...I am learning that is especially true with lyme and you must listen to your body and follow what ever course seems right for you...I am not against going back on ABX if I feel they become necessary but I am so glad to be off them at the moment...to each their own...I must say though...that without the help and support here on lymenet I could not have made it this far and I am so grateful for everyone here that so willingly give their time to help others...I hope I can do the same...keep up hope...there will be bad days and good days ...and the good days will increase once you find the right treatment path for you...our collective exoerience here we could turn into a lyme "Bible" ! Good luck and keep on trucking ! As Miss Clairol says,,," we're worth it " !...
-------------------- "Gratitude is not only the greatest of virtues , but the parent of all others "....Cicero Posts: 254 | From new jersey | Registered: Jul 2009
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posted
I was treated for Lyme, bart, babs, heavy metal...I went through a nightmare couple of years, and emerged improved a lot, was on a steady plateau for a while, and then started to head downhill a few months ago.
I've always thought I was eating gluten free, but lately found out I have to be much more diligent (1). My doctor upped my thyroid dose(2), and put me on an anti-Candida treatment(3). I got more strict with the sugar (I have to stay REAL LOW carb-4). So, it was those 4 tweaks I just mentioned that turned me around, and I'm getting better just as fast as I was going downhill before.
I've had Lyme much longer than 30 years. I feel I'm getting close to being symptom free except for fatigue and a sleep disorder. Recently, research using proteins in the spinal fluid have shown that Lyme and CFS are 2 different problems, and I've been diagnosed with both (& FM of course). So, I wonder if what's left is something other than Lyme. Or, since I've been infected for so long, maybe there's permanent damage.
I would say that if I were to stop progressing and stay at this point, all the pain, hassle, misery, and money has been worth it.
Instead of being dead about 4 years ago, now I'm still a "sickie" but can have fun, and am improving, being a useful human being, with more ups than downs. "It's not the best restaurant in town, but I'm hungry!"
I shudder to think of going through the early part of treatment again, but I would to get back to this point. I really feel I'll get much better now, and who knows? Maybe I'll be on maintenance, which looks like remission, but with the mountain of supplements and herbs to keep bolstered.
I guess my point is agreeing with all those who have said if you're not improving, start looking at other things that could be going on. And NEVER give up! Please. Posts: 552 | From New Mexico, USA | Registered: May 2007
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-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
I don't have the answer to the question...I think there are people who walk away well.
It is so hard to know what works, for sure though...especially those of you who have been doing treatments for many years...(my daughter is well over a decade on treatment now, and she has probably done it all throughout that time.
And, like most here, tens of thousands of dollars spent to date.
But, these days things are much different for my daughter...she is better than she has ever been since she got sick.
So, it begs the question...what worked? I don't know...I just know, that what she is doing now has helped her improve immensely, but who is to know whether each step taken these past eleven years was somehow a culmination of all things done to get her to this point? Mind blowing if that is the case...
It has been one heck of a ride...one that both of us wished we could of gotten off of a long time ago.
Be hopeful...I never thought I would hear my daughter say, "I feel great!" ever again, but she did say just that yesterday.
Will there be bumps in the road in the future?...I don't know, maybe, but I have now seen that there is health where only sickness resided, so no matter what, if things did indeed go bad, I know she could get well again...this I am certain of.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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posted
I thought they did....I thought I did. But, I am back here again. And with every relapse and every cycle within that relapse...I die a little more.
Never thought I'd give up...couldn't understand anyone who would....but it is tougher every day for me.
You can see by my member number how long I have been fighting this. When I thought I truly won in 2004/2005, I rarely visited here even to read. I'm not much of a poster as you can see. But since 2007 it has been a slow decent to hell.
Sorry to be so glum, but that's how it feels right now.
Posts: 101 | From MS | Registered: Feb 2001
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posted
Tri- Another thought...What makes it so hard is that is seems for so many of us, our pre-days were so vibrant and full of life. It seems there are so many of us that were classic type "A", athletic, social, multitasking, go to if you wanted it done (and done right) kind of people.
Sometimes I wish I didn't remember who I was before!
Posts: 101 | From MS | Registered: Feb 2001
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chiquita incognita
Unregistered
posted
Good point Missy. Someone pointed out to me not to compare. That can be tough, but if we work at it and just accept where it's at, maybe we will be all the better off. Zen and the art of the Now, if you know what I mean.
Best wishes, CI ps easier said than done, I won't pretend otherwise.
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-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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posted
I agree, it does seem like those of us who are hit the hardest were the ones who were goinggoinggoing before we got sick, OR the ones who have simply been sick forever.
I think that in fact you can heal. Will we ever be the same? Probably not. How can you be when you go through something like this?
I feel like I have come to a turning point finally. Like others, I have found that me and abx simpy are not friends. I feel toxic and poisoned no matter how crazy I am about detoxing. For me the actual turning point was quitting all meds and taking a 2 week break from everything then taking a low-and-slow approach.
I also have started dealing with my 'systems' as I feel like I can't progress any further unless I repair some of the other damage. All the abx in the world aren't going to fix my gut, repair my thyroid/endocrine system/immune system. So, that is my focus now, taking LOW doses of supplements and working up slowly.
I am changing my diet, have been able to start running again and I also take LDN.
I know I will need to treat for Lyme again, as I know I am not cured, but I truly feel that strengthening my systems will help me to tolerate the Lyme treatment better...which in the future will be herbs.
Based on how I feel right now, I believe I have made the right choice. Felt like death on abx despite daily detoxing(sweating, epsom salt baths, coffee enemas, charcoal, chlorella, etc)feel HUMAN now, able to do things with my family, run, participate in life and I am not glued to the couch.
For me, abx would have killed me. I just can't buy into feeling THAT bad, and expecting to get better. When I think of the stress it puts on your system to be THAT sick on top of being sick...it just makes me really wonder about the treatment protocols. I know Dr's do the best they can and they *think* balls-to-the-wall with abx is often the way to go(or heavy herbal/supp. protocols) but...gah, it just feels so wrong when I look at or read how much people are suffering...and for YEARS.
I don't know. I only know what works/is working for me. YMMV.
Posts: 206 | From In the shadow of a mountain | Registered: Feb 2011
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posted
Raw, you are soooo right!!! Did you notice any significant progress from LDN?
Posts: 723 | From Montreal | Registered: Oct 2010
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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
Raw...what you wrote is something I would have to agree with...my daughter does not tolerate abx any more and you know something?....I am totally okay with that. From what I have observed in my daughter this past decade, I don't think abx is the end-all treatment for Lyme, perhaps unless you are in the very early stages.
My daughter's doctors realize too, that you have to give your body the tools to help eradicate the bb or else it will be a loosing battle...and that is just where she is at these days...taking the back-door approach for the lack of a better term.
Is she better?...very much so...has she finished the race?...not yet, but close, I pray.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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posted
I'm back to living life, so I don't post much. I owe my health to God and the Erchonia Cold Laser. Look up member name Ocean and her posts on the laser - She is back to living life as well.
Posts: 262 | From ohio | Registered: Jul 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I thought Ocean had a relapse lately. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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