phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
So confused as usual and I am sure it may be my choice of doctors but doing the best with my travel and financial situation.
I have seen a Lyme Friendly doctor and One LLMD both wanting to treat my esoph, acid reflux before any more abx. LLMD wanted to build my immune system and treat inflammation before abx .. This has been a merry go round since 2011 even though I have had lyme for many years.
Followed the advice of the doc with meds for esoph. supplements for inflammation/ immune system.
Then tried the abx route again and all the same problems as in 2011. So the last doc did do another Western Blot and it came back negative..This is the same one that showed 2 IgG positive bands before through Igenex.
I have never been properly treated with abx and at this point I am being told I do not have Lyme. So testing for other things that so far are all negative.
Could Lyme just go away ? One doc told me once positive always positive .. This has been going on for over 7 months .. I just feel I have not found the right doctor and never been properly treated. I am not doctor hopping as I can't afford that but how I would love to find a good doctor that I can trust. At 71 yrs maybe its too late. Guess I am just venting again. thanks.
Posts: 1058 | From VA | Registered: Oct 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- A CDC negative test does not, can not, and often will not mean the same thing as the absence of lyme.
Not to reply, but to consider:
IgG or IgM?
Were ANY Bands + or IND / EQV?
What lab was used? What day of week was the blood drawn? How many days passed from the blood draw to the day(s) of testing?
Where did it travel before being tested? How fast did that travel (some samples literally travel for days, not good.)?
Were the technicians who performed the test trained and certified to perform LYME testing? Many are not.
Did they test ALL the bands? Likely not. Still . . . there is so much to consider. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
WHY you need an ILADS "educated" or "minded" Lyme Literate doctor (whether MD or ND, or both) - starting with assessment / evaluation for lyme, OTHER tick-borne diseases, and other chronic stealth infections - and all that goes along for the ride.
Medical "models" explained here, as to differences in the ISDA & ILADS models of testing, assessment & treatment - and exactly why it is so very important to know the differences. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Could Lyme just go away ?
There are many different strains, many considerations.
Were you to be well, I might say you got lucky. the point is that you were not adequately treated and never reached a point where you got better.
So, I would say, not likely.
Still, you have repeatedly stated that you have had trouble finding an ILADS educated doctor near you - on your budget --
and trouble tolerating Rx treatment.
So, seems like you have a couple choices.
1. If your budget could manage one of the best ILADS educated LLMDs who would really do a full head approach with all the support methods to help your body better tolerate treatment, that would be a good start.
As I recall, though, you have not been in such a position so have had to settle for doctors that at least did not kick you out just for mentioning lyme. They did not know much but tried to help with limited knowledge -- and when you could not tolerate what they could do were stumped.
2. Trust doctors who know absolutely nothing about lyme - or other tick-borne infections (or connections) and take their suggestions.
IMO, and in my experience, this route is not likely to work out well for anyone with chronic illness.
3. If your budget does not allow for an ILADS educated LL ND (naturopathic doctor) or an LLMD who may other OTHER ways to approach this,
read all you can from the various protocols and see what your budget can manage and what your body might tolerate.
Lyme treatment is multi-faceted. Sometimes, when budget is limited, just sorting out the most important parts first can make a difference. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You say: "LLMD wanted to build my immune system and treat inflammation before abx" (end quote)
This is NOT a real LLMD. It is absolutely impossible to do this and every ILADS educated LLMD and LL ND knows that. Lyme dismantles the immune system. It must be addressed at the same time as support methods.
Waiting a week or two, maybe, but not for a long stretch. This is not a real LL doctor.
However, the fact that your esophagus has trouble tolerating abx is a major consideration.
Still, there are OTHER ways to explore. But if stick with the doctors who are ignorant about lyme, it's not likely going to lead to success.
There are other ways, really. Other ways to address it directly with support.
If your budget and location allow, find a real ILADS educated LLMD or LL ND.
If not (or even if so), find a "tutor" of sorts to help you sort out all options. Your area support groups would be the place to start. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
"This is NOT a real LLMD. It is absolutely impossible to do this and every ILADS educated LLMD and LL ND knows that. Lyme dismantles the immune system. It must be addressed at the same time as support methods. "
Agreed. Please find another doctor to treat you.
Negative tests are notoriously inaccurate. If you had some bands awhile back, that's your answer.
Posts: 2839 | From California | Registered: Jul 2012
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phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
Tks for your input. The LLMD I saw I got from Seeking a Dr. I did post a comment there. I was seen in 2011 and I had 40 different test done, many through Igenex. My first Western Blot was IGG positive with 30+, 34+, 41++, IGM negative with 23, 41 IND. Second test no + on IGG and one IND on Igm 18..This was about 4 months ago. Tested for many other things all negative too.
I am doing better but not near what I was before Lyme and the LLMD told me to only expect a 40 percent improvement, guess I have reached that.
Still have many down times never had a full good month .
Just feel I have never found the right doctor that knows their stuff..
Posts: 1058 | From VA | Registered: Oct 2010
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Sometimes esophageal reflux can be associated with hypothyroidism. Don't know the mechanism for this, but low thyroid can cause many symptoms too. And lyme attacks thyroid.
Posts: 2888 | From USA | Registered: Mar 2004
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phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
Poppy, have had my thyroid checked many times even saw and endoc. had the antibody test etc. was hoping for thyroid as I have more thyroid symptoms than lyme.. Yes, lyme attacks everything. I wonder if my age, 71 , is a factor.. tks
Posts: 1058 | From VA | Registered: Oct 2010
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