posted
No, the treating llmd has not yet suggested. But my wife has been on all different combo of abx since May 2009, with nothing to show as far as improvement is concerned. She continues to deteriorate and it appears that all options have been tried including IV.
A recent visit to an alternative doctor makes the whole thing harder to proceed. She insisted that due to long term abx, my wife now has a very unhealthy guts despite her heavy dose of the best probiotics she has been taking. In her examination, she used the terms "Leaky gut syndrome" and "mitochondria", among others. This doctor isnists that she stops all abx, and concentrate on removing cadmium and other heavy metals and toxins. She think taking the abx for a "presumed" infection is the exact act my wife does not need.
I find myself hard to argue because she has been on abx for so long and she has not even responded to any of the meds.
Her symptoms are both neuro and physical. They are equally devastating...
Is it time to quit?
Posts: 822 | From midwest | Registered: Apr 2009
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Dear wtl, No, it's not time to - quit considering LBb and serious co-infections like babesiosis & bartonellosis - quit searching for relief of your wife's symptoms - quit hoping
Your care & concern are evident. Lyme battles are frequent, long and horrid. Today may be a time to rest...
I urge you to look into switching LLMDs. Each is unique in terms of background & experience, as are you & your dear wife. Since she continues to deteriorate over the past 1.5 yrs despite tx with an LLMD, a different (better!) LLMD is need asap.
Your new LLMD must be ILADS-active (attending conferences and interacting with other successful LLMDs between conferences). No one can stay on top of all the latest research and treatment breakthroughs without being tied in to an excellent network.
There may not be an excellent ILADS-active LLMD near your home who has a record of getting numerous CLD patients into long-term remission. If that's the case, please select a few other states where you'd consider travel, and post in Seeking for input.
The protocols of the famous Dr. K of WA and ILADS' Dr B of NY have been shown to heal thousands.
If your LLMD hasn't fully controlled your wife's Babesia (symptomatic OR asymptomatic), then she won't be free of dis-ease until babesiosis has been managed effectively.
From what I can tell so far, people who remain ill or relapse are most troubled by: - Babesia - yeast overgrowth (men, too!)
Other big factors: - trace metals - intestinal parasites - environmental stressors
The alternative doctor who recently saw your wife may be right about "a very unhealthy gut" and the need to remove metals & toxins. BUT there's a problem with taking advice from anyone who refers to TBI as "presumed infections."
If your wife stops all abx while still quite symptomatic and without a sound plan from an excellent ILADS-active LLMD, she's at high risk for worse dis-ease.
Maybe you can find an ART practitioner trained by Dr. K of WA who has an office not too far away?
After two other llmds, she is now under the the care of "supposedly" the best llmd on the east coast. I know she had a course of babesia treatment and her llmd is not giving up on her. But I just feel the possibility of "barking at a wrong tree". I have no evidence to say one way or the other, but the way she is not responding....
Posts: 822 | From midwest | Registered: Apr 2009
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
wtl - have you looked into hpu or molds or other toxins that may be blocking her from getting well?
My son was not getting better on abx. As a matter of fact he was getting progressively worse. I kept searching for answers and for a while, kept overlooking HPU.
We have now determined this is his block. He is very metal toxic (mercury and lead).
Molds are also an issue with him.
Right now we are treating HPU and parasites and he is finally having some gains. It's slow and steady, and heading in the right direction - toward wellness!
Does your wife have amalgams? HPU is a zinc deficiency caused by mercury, lead, aluminum and other poison metals.
Unfortunately, heavy metal poisoning is just as controversial as lyme. I have had to do a lot of the research and go to great lengths to get testing done. My son's LLMD is on board with the diagnoses. She has done many of the tests to confirm what I believed to be true. Some have been made illegal in NYS where we live.
I am treating myself without a doctor because I can't find an adult doctor who will help me.
I hope you and your wife find what works for her.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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I did forward the Dr. K's article about KPU to our east coast llmd but he is not familiar with it and thinks it won't affect the "treatment" even she tested positive. But i did add zinc and other things suggested in her daily supplement intake.
mold - I am not sure exactly what needs to be done other than that we had hired a professional to test the house and found no trace of mold. I believe she also had blood work that also indicated no exposure to it, but I don't know how accurate these tests are.
She has been under heavy detox programs with supplement, diet, and other thigns that have been suggested to us.
I just feel she is at the end of the rope...
Posts: 822 | From midwest | Registered: Apr 2009
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desertwind
Frequent Contributor (1K+ posts)
Member # 25256
posted
I don't have an answer for you but just wanted to say that yes, that is a very difficult space to be in.
Has she EVER taken an abx break or pulsed her meds?
May will be 2 years of tx with no - no benefit at all?
While it could take years to get rid of all the lyme/co.s you would expect to at least see some improvements here and there during that time. Even if for just a small period of time.
DOes she see any patterns of herxing and then feeling even a bit better?
It's all just my opinion but maybe she does need some serious detox at this point. Could be she is not able to clear out the toxic die-off from the ketes and that could be keeping her sick.
Sometimes you need to go with your gut and try something new for even a little while to see how things go....Best of luck
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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momlyme
Frequent Contributor (1K+ posts)
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posted
I am sorry you are so frustrated - and I am sure if you are it is because of your wife's frustration. It is very difficult to be sick and see no forward progression.
Have you read anything by Andrew Cutler? I am integrating his oral chelation into our HPU protocol and many of the metals are leaving the body through hair and urine.
I am supplementing with zinc, and the vitamins & minerals on the HPU protocol. Then doing the chelation round the clock for 3 days, every 4 hours... and 3 days off.
I am using DMSA on myself because it pulls mercury from the body and I just had my amalgams out.
I am using ALA and low dose DMSA on my son because he has never had amalgams.
There is so much to read on this... but I see you said in another post that your wife is very metal toxic. Metal toxicity does not always come from amalgams... there are many poison metals and sources of contamination.
These are just a few links that I am currently studying.
My doctor also had never heard of KPU... she had a different reply. She believes, as I do that Lyme Disease can be made more complicated when there are underlying conditions. She is willing to learn and help my son through this process.
Heavy metals mess with the body's ability to make the necessary enzymes to detox, to make other enzymes, to digest and many of the other functions.
It is difficult to find doctors who will help with heavy metal detoxing. Most don't have a clue about how to do it safely. I have had doctors tell me that the metals are not a problem and that is why they are not found in the blood...
The reason they are not found in the blood is because they like to hide in fatty organs. The brain is very fatty. The brain is the biggest hideout for heavy metals.
This is all my opinions, my experience... and I am not a doctor.
I hope I have helped you in some small way.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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I wish I could say that she has had some improvement over the almost two years of time, but she doesn't. Not from what I see or how she feels. Given that now I know the "real" treatment started since this past May (2010) because her previous treatment was not "adequate". However, even her current llmd acknowledges that, even with incorrect doses and combos she was on before, she had exposure to the abx, and that's not a bad thing.
mom -
I will read through the links and digest. She now does have a good metal toxicologist on her side, but unfortunately she is all metal talks with open skeptism about infections. I am debating how to make her work with the llmd. A dilemma.
And you are helpping a big way, really.
Toto -
Good you mentioned the abx break - she is on one now, well, except IV doxy which will be done in another week. Her llmd is gonna talk to us once this round of doxy is done and see where we go from here. But I am not sure if the "break" was intentional in the first place because she was getting to a point that she would throw up every time she took oral meds (or could be from chlorella, I am not sure).
How can one know the yeast is the problem? Blood work? Urine?
Posts: 822 | From midwest | Registered: Apr 2009
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posted
I haven't been here but maybe others can post about it. Could the Hansa Center maybe help her?
Posts: 857 | From northern california | Registered: Dec 2009
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Please describe her symptoms completely, if they wax and wane or if they are constant, and the treatment she has been on.
Sometimes other people with the same experience can pick up on something to help you. If you are only treating Bb, there could be co-infections that need to be addressed.
-------------------- 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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She has quite a list of symptoms and she has been on a lot of different combos over the past two years. So I am not sure if I could list them all.
But mainly she has the worst mental and physical symptoms anyone can imagine. I swear because, acording to her llmd she is seeing now who has seen some 20,000 patients in the past, she is one of the worst, if not the absolute worst. I am serious.
On the mental side, she is close to the last stage of Alzheimer's. You can hand her a cup of medicine and told her to take it, she would forget all about it before she takes it.
She stopped reading all together because she couldn't understand what's on the page. And her education background is in engineering and has worked for many years as engineer.
She has that "dull" facial expression all the time.
She can't join any conversation, not even hardly one-on-one.
She can't walk, not because it is just pain that prevents her from walking. She is stiff, and physically has problem bending her joints. Her ankles now have that look of "deformity" even though you could move the joints with your hand back and forth to "prove" they are not from the issues with bone or muscle.
I would describe her symptoms as "constant".
She has been on all the oral abx mentioned here, plus more. Anything and everything on everyone's list, although some of them she never took at the dose for Lyme patients as some of you said they should.
And right before she stopped her oral, she was on plaquenil, rifampin, zithromax, nystatin, and iv doxy. Plus she has all supplements worth literarily $600/month.
She was also on IM b-12, IV glutathione and IV magnesium.
Again, like I said, none was making any noticeable improvement.
Posts: 822 | From midwest | Registered: Apr 2009
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canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
When to call it quit? Sometime around.... never!
Hang in there
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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