phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
After 13 yrs of this dx in 2011 have tried lots of treatments. I get to feeling better for awhile but seems it never last. Its like a roller coaster I will think I am doing much better and bingo seems I am hit hard ..
I wonder if I am going to have to live with this roller coaster forever.
Went the abx route, then the natural, due to bad reactions from abx. its driving me crazy as I don't know what to do next. My doc is clueless . I am going back to the LLMD in a month or two but beginning to think is this Lyme.
My main symptoms is the depression/anxiety and the weird head feelings . The GP keeps saying its a sinus infections..
Tks just venting. At 70 yrs of age I feel this is as good as it gets.
Posts: 1058 | From VA | Registered: Oct 2010
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poppy
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posted
For some of us, having some quality of life and preventing the worst outcomes of lyme is the best we are going to get. It is a chronic disease for some of us. So it isn't that the treatments don't work, it is that that we aren't cured.
With cancer, sometimes you will hear the experts say they hope to arrive at the day when this disease is chronic, as opposed to fatal. They see this as a good outcome.
Patients do not necessarily feel chronic is good, but when you look at the worse possibilities, it starts looking like something to accept.
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phyl6648
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posted
Thanks poppy, You have mad a good point. Acceptance now.
Posts: 1058 | From VA | Registered: Oct 2010
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Keebler
Honored Contributor (25K+ posts)
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posted
- "The antibiotic route" is not always the same. Some can try this and that for years and go nowhere.
TF was in that cycle, then got to a LLMD who was very assertive and she reached remission in about a year, with the CORRECT treatment for her body, Rx with support but the Rx part was very assertive.
Too low of a dose, too short of a time, not assertive enough combination can lead to treatment failure.
Too often the antibiotics are not the right ones, not the right combination, not in the right rotations and the cyst / biofilm is ignored as liver and adrenal support may be.
As I recall, you've had trouble tolerating antibiotics for very long, the doctor who was treating lyme for you was not exactly the most expert, etc.
You barely got any treatment at all, in terms of what's required.
So, the variables could certainly keep you from remission. On the other hand, even with the best LLMD & best plan some can't tolerate antibiotics.
So often, thought the right liver support has not been used. That can make a huge difference.
And many have achieved remission with RIFE. Always others ways to approach this but, from what I've seen, assertive approaches are required.
I do not believe that anyone, at any age should accept they just have to be infected activetly with lyme for the rest of their life.
Just because you have not YET found the right plan does not mean that it's okay to just assume this is how it has to be. It can be better than this. To quote a song from the musical "Sweet Charity" - "There's got to be something better than this . . ."
I just know it. I've seen it for others. It can be that way to for you, too. For many more good decades, really. Don't settle for inferior treatment approaches. There are better choices with LLMDs and LL NDs who are also expert at other tick-borne and other stealth infections, as well as support methods. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Let me quote Michael J. Fox (who is dealing admirably with Parkinson's disease, while helping others and currently filming a new TV show!):
"There's a difference between acceptance and resignation. I've accepted that that's my situation, but I'm not resigned to the fact that it has to be that way always."
So, I'm truly hoping you are not confusing acceptance with resignation.
You wrote you have tried lots of treatments. Have you seen a good LLMD? Have you treated Babesia? Your "weird head feelings" as well as the depression and anxiety could be Babesia symptoms ...
Sending you positive vibes,
Nula
-------------------- I appreciate all your replies. If it takes me a while to respond, it is either because I'm too sick or because I am unable to log in. From European servers, Lymenet is very frequently inaccessible for days at a time ... Posts: 235 | From Europe | Registered: Jul 2012
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posted
Keebler, we posted at the same time. I agree. I like your quote as well :-)
-------------------- I appreciate all your replies. If it takes me a while to respond, it is either because I'm too sick or because I am unable to log in. From European servers, Lymenet is very frequently inaccessible for days at a time ... Posts: 235 | From Europe | Registered: Jul 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Also important to consider: side effects of so many drugs that are supposed to treat symptoms but can actually make those symptoms, or other ones, even worse.
Be sure to consider that some Rx (espcially the psycho-active drugs, sleep or pain meds) you may be taking could be having the opposite effect of what is intended. It happens often for those with liver issues and for those with lyme. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
LL Naturopathic links here, too. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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poppy
Frequent Contributor (1K+ posts)
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posted
Sorry, I will have to disagree with the wonderful keebler and with TF on this one. I have been to the best. I got rid of babesia with their help. Lyme can be intractable for a significant portion of the chronic cases. We need better treatments for a very wily opponent.
Not to discourage anyone from trying anything, but I feel it is unfair to set patients up with the expectation that if they just try enough doctors and enough types of treatment, alt or not, then they will get to remission or cure. It is good to make sure of this, though, and check out reasons for not tolerating abx.....genetic, etc.
The thing is not to take anyone else's story as yours, because while they may firmly believe what happened to them is the gospel, it isn't for everyone. This is the danger with patient stories being told to other patients.
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Keebler
Honored Contributor (25K+ posts)
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posted
- Some excellent points poppy makes.
Still, if the basic keys of treatment have not even been addressed, it just seems that backing up to be sure all the bases are covered seems a good way to move forward. And different - more precise - ways to address the key elements often work where others have failed.
If there is a chance, well, then there is a chance.
The thing is, though, that when the not-so-expert doctors (the "only ones we can find" kind of doctors) just give up on us, that does not mean that we should, too. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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phyl6648
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posted
Poppy, I have to agree with you. I have done my best and chose the LLMD I could get to and afford. She has Lyme herself.
I do know the difference between a herx and a reaction. I have searched, read, talked and tried. If I see anything new I will try it within reason.
I am so happy for those that get well, go into remission as I have been there at times. Maybe something else is going on is why I have made an appointment with the LLMD not than I can afford it but I just want some answers.
Why I say this is I have a friend that has gone to all the extreme measures.. Started orals, the the long term IV's Twice she has tried detox, diet and I mean sticks to the doctors orders 100% also her diet ect. Even moved and sold her home so she could do this. Treatment going on for over 5 years. She did get so improved actually started her business only a few months later for the lyme symptoms to return and is slowly slipping back.
So what works for some doesn't always work for everyone oh if it did wouldn't it be so simple.
Tks to each of you for your input. I know I am a whiner but this is my only venting place .
Posts: 1058 | From VA | Registered: Oct 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- phyl,
What about a rife machine?
For many who have had trouble tolerating Rx (like you have), rife has been a good help, often. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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phyl6648
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posted
Keebler, this is one thing I am going to discuss with my doctor when I see her. I just want to have more test and make sure nothing new is going on. Thank you
Posts: 1058 | From VA | Registered: Oct 2010
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Catgirl
Frequent Contributor (5K+ posts)
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posted
Have you considered parasites? It was stated at the annual ILADS conference last year that parasites are the number one co infection. This is huge. I truly believe they are the cornerstone of diseases, cancer, etc.
All of my sinus issues went away with parasite treatment. All of my hayfever that I thought I was allergic to went away with parasite treatment. Even some stuff I thought was yeast. I can't tell you how shocked I was to discover this, but thrilled I no longer have these issues. Even my depression reduced with parasite treatment (who knew?).
Unfortunately, parasites are even more unknown or accepted as an issue than chronic lyme is. I knew in my gut I had them, and treated myself with herbal formulas, salt/c etc. I am so glad I did, because eventually I had enough evidence for my lyme specialist to see that they really were an issue for me.
My doc also opened my eyes to the fact that chronic lyme must be managed. Not every one is successful with abx. I'm guessing maybe 50%. I also believe that once we have it, it never goes away. We can knock it back to remission, but somewhere dormant, a cyst form probably exists.
Man thinks he is so smart with abx. BB has 12 extra strands of dna to help them survive. The minute they detect an attack, they not only protect themselves, they also convey to every other virus and microbe in the body to build a defense (Buhner). Microbes, bacteria and viruses have been on the planet forever. They learn to adapt and survive. For some reason, man has it in his head that he can kill everything (the wrong approach, IMO).
Yes, it's a roller coaster at times, but working on getting rid of toxins, heavy metals and parasites has improved me to the point of giving me hope. Also trying new things (never give up). I recently tried ondamed and really like how I feel. I am also learning to take better care of myself now by managing my energy (this is so important). I just told my husband last week that I can see a better me on the horizon (he was so happy!).
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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sparkle7
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posted
I agree with catgirl. I would check into some anti-parasite treatments if you haven't done that.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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phyl6648
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posted
Thank you Catgirl. The doc tested with a stool sample nothing showed but not surprised as I know we all have parasites to a certain extent. I have tried treatment something herbal can't remember plus the detox juicing . Will ck more into it.
Posts: 1058 | From VA | Registered: Oct 2010
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CD57
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posted
Interested, Catgirl, how you knew in your gut you had parasites?
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Catgirl
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posted
You are welcome, Phyl6648.
CD57, I just knew (gut feeling) after reading other people's posts/symptoms. I remember Gigi posting about the yeast/heavy metal/parasite connection. It made total sense.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
@Catgirl - what type of parasites are you referring to? Intestinal, bloodborn? Buhner considers bartonella and mycoplasma to be parasitic, depleating the body of nutrients with the aid of the cytokine cascades they produce. Did you find improvement treating for intestinal parasites only?
-------------------- 13 yo DX PANS/Tourette's/Asperger's/ADHD treated for Igenex positive bartonella/IND lyme with 2 years of abx treatment. Weaned off abx April 2013 at 80% improvement. Continuing with Buhner bartonella/babesia protocols. Aug 2014 99% improvement. Posts: 265 | From Canada, Ontario | Registered: Jul 2013
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posted
I think you should keep trying stuff. If you tell us your symptoms, we can respond with what we've tried.
Sinus problems? I remember that drinking mangosteen juice cleared out my sinuses for 48 hours, and I didn't even know I had a sinus problem!
I remember that a homeopathic remedy, suggested to me by an expert homeopath doctor, hit the depression on the head - it was pulsatilla 12x.
I'm not saying that this remedy will work for you - I'm saying maybe to consider seeing a good homeopath because sometimes they can come up with some surprising results.
Posts: 13116 | From San Francisco | Registered: May 2006
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Catgirl
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posted
Rowingmom, Yes, improvement was from treating intestinal parasites. I don't know what the parasites were, I just felt better right away so it was obvious. It's important to remember that testing is incredibly inaccurate (even worse than the western blot, IMO).
Ivermectin notably knocked my babs down. I had some improvement on bart as well. I've suspected bart as parasitic for a while now (it flares every full moon on me).
I remember my symptoms got worse around the full moons (that's when they reproduce). Maybe that was what gave me the gut feeling. Also Gael has been telling everyone forever that parasites are an issue. I finally opened my mind to the fact that humans have them too--even in first world countries (they are everywhere on the planet). Humaworm's website has a good list of symptoms.
The more I treat, the better I feel.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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phyl6648
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posted
Thanks Robin, didn't think of my symptoms. The main ones are off balance, sinus like headaches usually wakes me up of the morning but leaves once I am up, ears ringing, and feel plugged body aches and tiredness. Just a werid feeling off balance when walking and a crazy feeling in the head when I have this then I have a lot of anxiety/depression and cry a lot. Other than that all the other symptoms seem so little. except the bone aches in my legs after I walk a short distances not while but later deep bone aches.
For not I am back on Clindamycin for a sinus infection, nasal rinse with sea salt and peroxide, the ENT says I have a chronic sinusitis that is causing my symptoms so for now going to take what he prescribed. I also take Xanax, vitamin/mineral supplement, fish oil d3 b12 and vit c, probiotic and going to get the prebiotic, curcumin and when the aches are bad I take coated aspirin for pain.
I have tried at 100% the no gluten, sugar and dairy but couldn't tell that much difference after 3 mo. I am still watching and don't cheat much but not at 100% on the diet.
Do you have a good probiotic and prebiotic that you would recommend I would like to find one all together.. Tks. and how are you doing? Are you off the clindamycin if so what you trying now? tks
Posts: 1058 | From VA | Registered: Oct 2010
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posted
I seem to remember reading somewhere that the off-balance feeling could be Babesia? I've read so much stuff, sometimes I can't remember.
-------------------- Son, 26, Dx Lyme 4/10, Babs 8/10 Had serious arthritis, all gone. Currently on Valtrex Daughter, 26,bullseye 7/11 arthritis in knees, cured and off all meds. . Self:Lyme, bart, sxs gone, no longer treating. Posts: 496 | From Washington, DC | Registered: Jul 2010
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posted
I have had more than one doctor tell me that parasite testing isn't very accurate (including stool testing). So just because nothing showed up on your tests doesn't mean that parasites aren't a problem for you. Your doctor should know that.
So I would definitely try parasite treatment if that is something that you haven't really attacked yet. It is certainly worth a shot if nothing else seems to be working.
-------------------- Sick since 10/2001. Tested CDC positive for Lyme 10/2008 through Quest and Igenex. Started treatment 1/2009 with LLMD. Lyme, Erichilosis, Chlamydophila Pneumoniae, Q Fever, Strep Syndrome and probably a few others I am forgetting. Posts: 451 | From Virginia | Registered: Feb 2009
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Phoiph
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posted
You must never give up, and never accept that this will be your life forever, however defeated you feel. Maybe my situation will give you some hope and possibly a new direction to try:
I had severe neurological Lyme w/Babesia & Bartonella for 8 years...considered an antibiotic failure, and so ill I was homebound for 5 years straight. My mental and physical symptoms were extreme and too numerous to list, but included severe, relentless neuropathy from head to toe (which, incidentally, became worse whenever I stopped moving...hence NO rest...ever). I was told, even by LLMD's, that I was the worst case they had encountered, that I needed a miracle, and there was nothing more they could do for me (I tried many, many protocols with never any improvement, just a continual spiral downward). I thought there was no way out of the nightmare I was in.
I eventually became so ill and environmentally sensitive that I could do no treatments for 5 years before starting (MILD)hyperbaric treatment w/supplemental oxygen (I bought my own chamber and self-treated 1 hour daily).
I now have my life back...working again, running (I had been a runner for 17 years), traveling, etc. It has been a miraculous recovery, and it is 100% due to mHBOT (along with meticulous diet, and gradual exercise).
I believe success depends on the frequency, consistency, and duration of use...many people say they "tried hyperbaric, but it didn't work"...but if you query them, inevitably they didn't do it consistently or frequently enough...or for long enough duration. It was definitely a rocky, 2 step forward, 1 step back recovery, but I'm BACK...low (pressure) and slow hyperbaric WORKS...I'm living proof...
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