posted
Without getting too into the details, who here is much better than they used to be but is having difficulty getting fully to the place of dropping treatment?
I have been in this place for a while now and I get the sense from my llmd that this is unusual. But I wonder if it really is?
Anyone?
-------------------- unsure445 Posts: 824 | From northeast | Registered: Jun 2008
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posted
I have been stuck in this range for a year; sometimes better sometimes slipping backward, but always in this range.
When I tried to ween off some antibiotics, symptoms eventually started to return. Now we're looking for the "missing" piece.
Posts: 964 | From san diego | Registered: Oct 2009
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MichaelTampa
Frequent Contributor (1K+ posts)
Member # 24868
posted
I'm in that group as well.
I had heard it was common, that it is easy to get significant improvement but hard to get over the final hump.
The feeling I get reading posts here, though, is that it is also common to be struggling and not getting much improvement. Seems like many do not have good docs and good plans and/or lack what is often significant financial resources to execute a good plan.
Posts: 1927 | From se usa | Registered: Mar 2010
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
I've been in that range for quite some time. My first LLND said the last 15% is the hardest.
I'm on a very heavy protocol and seeing results. (Still herxing in year 5!)
I have many symptom-free days. But I still flare, too.
posted
definitely not 100 but yea 75 - 85 a good amount of the time. Very hard to turn that corner.
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
That was me. Then, I switched to a top notch lyme doctor and was totally symptom-free in 7 months. In 13 months, I was done with treatment.
That was 7 years ago and I am still lyme-free and symptom free even after lots of stress, some steroid shots and other steroid use.
The doc is the key to getting rid of this disease. That's what my journey taught me. The doc is the key.
Lots of doctors treat lyme disease, but only a few know enough to get rid of it for a person.
I and 3-4 of my friends got rid of lyme and cos by going to doctors who followed the Burrascano protocol. That's the protocol I believe in because I have seen it work over and over again.
I had undiagnosed lyme, babs, and bart for at least 10 years.
Posts: 9931 | From Maryland | Registered: Dec 2007
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I am reluctant to say I am I am close to well because it will probably jinx me, but I have been at 90% about two months. It has been so long since I was 100% that I can't remember what it is like.
It is my mental facilities that I worry may not ever fully recover. I still have a lot of trouble learning new things. But I have been trying to understand the methyl cycle mutations and that is extremely complicated.
I am treating protomyxzoa now. It seems to be the last infection but it is never completely eradicated so I will have to be on the low fat vegan diet the rest of my life.
I was off all drugs (except LDN) for about 6 weeks. I restarted stromectol two weeks ago in hopes of seeing complete remission.
-------------------- 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
I'm there too. I'll have been in treatment for 2 years in Oct. I have been treating Dr. B style the whole time. Mold was also an issue for me I don't detox that or Lyme well.
The one time I backed off from heavy treatment, I was only on Ceftin and Malarone, I had a big Bart relapse. That was about 3 months ago. Then after that was under control I relapsed Babs.
I just started treating everything at once and I am planning on doing this for the next 5 months.
Hopefully this will do it for me.
Posts: 845 | From Northeast | Registered: May 2011
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posted
I'm maybe in the 75-85% range after 15 months. However, last checked my CD-57 was still very low at 32 so I don't know if the infection is simply "hiding out", which I suspect.
I am considering photon therapy to see if it gets me over the hump.
Posts: 478 | From Third Coast | Registered: Feb 2011
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beths
Frequent Contributor (1K+ posts)
Member # 18864
posted
Just returned from my LLMD-feels the last 15% sometimes is yeast and liver congestion.
If you don't clean them up-you will never get "over the hump"
Posts: 1276 | From maryland | Registered: Jan 2009
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Clearly, we are not alone as I suspected!! We all need to keep looking for the "missing piece" as bailey pup stated.
TF...so great you are cured! And thanks for still encouraging the rest of us.
I do see a top llmd fortunately. Who knows where I would be without their expertise!
I think our individual immune systems come into play significantly, along with many other factors. We'll get there though!
Anyone else?
-------------------- unsure445 Posts: 824 | From northeast | Registered: Jun 2008
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
I've been in the 90% +/- range for over a year. Still herx when I change meds.
Frustrating.
-------------------- 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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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Does everyone here who is still battling lyme still have their amalgams?
-------------------- --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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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Treating for parasites could be the missing link to getting you well.
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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posted
bcb, I am on many herbs and supplements along with plaquenil, no antibiotics. But if I switch the herbs or increase the dose i still herx as well.
It is frustrating.
I have fillings in my mouth but none that are metal.
Parasites...I need to treat parasites!!!! Does Plaquenil count as an all around around antiparasitic?
Thanks all!
-------------------- unsure445 Posts: 824 | From northeast | Registered: Jun 2008
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posted
Has anyone in this category had the new Dr B culture test to see if it is really still lyme?
Posts: 749 | From State full of ticks | Registered: Dec 2008
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posted
I have been doing an herbal parasite thing on and off throughout treatment. Should I be doing it the entire time straight through? Also, is it enough and good enough?? I get it at a health food store and have never noticed any kind of reaction? I've taken it a total of 3-4 months.
-------------------- Treating lyme, bart and babs Posts: 506 | From NE | Registered: Dec 2011
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
I have taken antiparasitics since 2006 along with salt/c. I had a HUGE exodus of parasites after 6 mos of herbs after I started salt/c. It was the salt/c that made them let go finally and continued for mos and mos. IMO, parasite tx needs to be ongoing.
Taking extra cloves will also kill the eggs.
Larae,
What are you taking? I eventually combined 2 cleanses, Parastroy and Hanna Kroeger Wormwood, extra cloves for a greater punch, along with the salt/c which is very powerful for Lyme and co as well.
it's important to step into any new protocol at low dose and work your way up.
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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-------------------- Treating lyme, bart and babs Posts: 506 | From NE | Registered: Dec 2011
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MichaelTampa
Frequent Contributor (1K+ posts)
Member # 24868
posted
I had my mercury fillings taken out years before lyme diagnosis and treatment, so that is not the remaining problem for me.
I did have a PCR test done by SpiroStat and it found some spirochete bug, though not one labeled borrelia. Then I did more parasite treatment and all heck broke out symptomwise requiring more lyme treatment, and I've certainly wondered how the result would've been different if the PCR was just after the parasite treatment rather than just before.
My home is not officially cleared of mold yet, either, so that is always a possibility. We've been slowly making improvements but haven't tested yet.
Nagalase levels are elevated, and neuropeptides MSH and OXY are off, as well, so that could be contributing as well.
Temperature is low but has been improving lately. I think circulation is still a part of the problem for me contributing to getting over the hump, and am treating biofilm more.
I also think dental issues can be an issue for some of us, with bacteria potentially hanging out in periodontal gum pockets.
Posts: 1927 | From se usa | Registered: Mar 2010
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I typically run at ~80%, go down to 60% a few days/month with my menstrual cycle.
I don't think this is unusual at all. My tremors are better, my joint and muscle stuff is better, my twitches are getting better but I still struggle with daily burning head pain and migraines.
In April, I had the new Borrelia culture done- I was positive. Also remain positive both IGG and IGM via Igenex. (although titer count is lower)
Been treating with antibiotics for almost 3 years. Did IV for 8 months, tried oral combo protocols, treated for coinfections, tried Byron White, Cowden, chelation, detox etc.
First thing my new LLMD did was treat me for parasites. He thought this was very important. Last MD would not.
I am slowly getting better since I started treatment, but I still herx on anything new.
I wonder daily if this is how I will be for the rest of my life. Its tolerable, but not fun. Daily pain wears on you.
I still have my amalgams. Considering having them removed, but its expensive.
What is the missing link? I wish I knew the answer...Is my immune system not strong enough? over-reactive? Am I getting too much exercise? Not enough? Do I work too much? Is it my teeth? Who the heck knows....
Posts: 233 | From Hudson Valley | Registered: Jun 2010
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blinkie
Frequent Contributor (1K+ posts)
Member # 14470
posted
I'm there. Been there for a few years. Doing much better since adding even more parasite treatments. Currently on Alinia (trying to tolerate it) and getting the yeast under control.
My CD57 is steadily going up and is now over 110. LLMD (top in the country) thinks if you're not there, you're missing something.
Posts: 1104 | From N.California | Registered: Jan 2008
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posted
I just started Alinia yesterday and my diarrhea has been worse. What have you noticed from Alinia?
-------------------- Treating lyme, bart and babs Posts: 506 | From NE | Registered: Dec 2011
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I have no clue whatsoever what the 80-90% level feels like. Never did since falling ill. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
me,too! after a year with top doc, Dr. B protocol, I fluctuate between 80-100%.
I just posted about this - I now believe for me that the key will be to address my whole self: mind, body, emotions and spirit. Questioning: many people come in contact with lyme, etc but never get sick. Like autism...but, some do get sick.
I am now really surrendering to healing all systems with everything that I have so that my body's natural abilities can keep me well!
nefferdun: how did you figure out what your diet needs to be??
-------------------- PHOENIX: mythical bird that rises from the ashes July '09 got sick very quickly could barely get out of bed - ND diag lymes.. and the journey began bite: unkown - no rash Posts: 248 | From private | Registered: Jul 2010
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posted
seekhelp: I hear you - do not give up until you have the doc who can really help you heal! but, I also believe that they are only a part of the equation. a big, part, though.
I would not be where I am without them for sure
-------------------- PHOENIX: mythical bird that rises from the ashes July '09 got sick very quickly could barely get out of bed - ND diag lymes.. and the journey began bite: unkown - no rash Posts: 248 | From private | Registered: Jul 2010
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blinkie
Frequent Contributor (1K+ posts)
Member # 14470
posted
Alinia is tough on my stomach. I get gas and severe upper abdominal pain. Sometimes, it's so bad I really feel like I'd rather die LOL! But...I trudge on because I want my life back.
It has helped my floaters, heart problems and just overall stamina, energy and feeling better.
Posts: 1104 | From N.California | Registered: Jan 2008
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