posted
If your LLMD who you have seen for 5 years, where you had always paid for each visit (totaling Lord knows how many thousands of dollars); where you were a completely compliant patient; followed his protocol with some success; never missed an appointment, is now charging for calls backs when you have questions, or requires you schedule another appt.
The office staff isn't equipped to handle the influx of new patients along with the current sick patients, and long term patients who struggle, such as myself.
If you had to formulate another plan, what would you do? Would you seek out another ILADS LLMD? If so this would be my 4th LLMD, knowing that most LLMD's follow the protocol of your current LLMD.
Would you find a Chinese Herbalist? Switch to something like the Buhner Protocol and try to do it on your own? If there are other protocols out there, I would appreciate feedback as well.
I am really lost here. But I know I have to do something else. I am someone who flares very easily from both herbs and abx. and I have a very delicate system, from years of undiagnosed illness and treatment.
I have done all combos of abx, and herbs. Generally once I am off abx, it's just a matter of time before I relapse and symptoms start returning. I have a hard time getting herbs up the the therapeutic dose and I have difficulty detoxing.
We have purchased a far infrared sauna, I try to exercise when possible, watch my diet and try to get as much rest as I can.
I am really floundering here, and quite scared of what lies ahead. This disease has stolen so much from me and the lives of my family.
I always thought that once I was under the care of this LLMD, I would be in better shape than I am now, and at least able to deal with the disease without being dependent upon their office.
Unfortunately I am still an active patient, with concerns along the way. It seems this office is not interested in helping me anymore unless I continue to dig deep into our already empty pockets. I feel like I have overstayed my welcome at this office, but change is very hard for me.
Thanks so much for your input. I honestly don't know what to do and both saddened and frankly shocked and embarrassed that I have to reach out like this. [Frown]
I posted in Finding a Dr. too. Sorry, wasn't sure where this belongs
-------------------- "Yeah, I miss me too." Posts: 234 | From NY originally registered in 2008 | Registered: Nov 2012
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Good to see you, sorry it is for this reason.
It appears the straw that broke the pocket book (camels back) is paying more money for the same dwindling services, which is what got you thinking about this, and I don't blame you one bit.
Looking at this from the outside in, it seems you are also frustrated about not getting better and are having a hard time justifying the continuing drain on your money, which is again, very understandable.
I see three basic options.
1. Get a new doctor and a fresh look at your health situation.
2. Stay where you are, being even more limited in the ability to get the help you need, feeling let down and uncomfortable, and paying more for it.
3. Give yourself a short break from doctors and see how you feel while doing some research on your own.
Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
Daphnesmom1...
I was in a similar dilemma. With a picc line still in my arm, I was told by my LLMD that I he could no longer work with me, and that I needed a miracle. I hung up the phone in complete disbelief and despair, not knowing where to turn.
I desperately sought out several more LLMD's who came to the same conclusion over time...there was nothing more they could do...and I was sicker than ever.
Long story short, I am well now (med free)...but I want through a living hell (homebound 5 years) before I found my cure (mild hyperbaric). Now, I am so grateful they gave up on me.
So, if you decide to take Tincup's advice (#3), you might consider reading this thread:
posted
Thank you so much for your feedback and suggestions.
Tincup, I like your 3 point plan. :-)
I have alot to contemplate and its difficult when you have to make these types of decisions when you aren't feeling, and probably even more risky to make them when you are having a good spell.
Either way, you are completely spot on in your assessment of the situation.
Phoiph, although I don't post much, I do read here and I remember when you posted about your success with the Mild Hyperbaric Oxygen Chamber, and keeping that nugget tucked in my brain.
I am so glad you posted about it again.
Robin123, yes detoxing is problem for sure, so I do try to boost detoxing as much as my body will allow.
I became allergic to Glutathione after years of taking it, either orally or thru IV.
It's sulpha based and I am allergic to sulpha drugs so, it was one reason I got the sauna.
I was 52 when I was finally dx after probably 5 years walking around sick, being passed from one dr to another.
I just turned 60 and I do feel that my body is more tired, unable to exercise as rigorously on the good days and perhaps that's partially why my body isn't responding as well to treatment, or can't hold up without abx.
Bodies do change with age. I have gone thru menopause in the midst of this.
I know it's time for turn in the road. Your guidance and experience is greatly appreciated.
I have been reading this board for so long, I often wonder, how the people from my initial posting era are doing.
My hope is that they have found a way out and that I will too.
-------------------- "Yeah, I miss me too." Posts: 234 | From NY originally registered in 2008 | Registered: Nov 2012
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
I hear what you're saying about the lyme docs but truthfully, there is only so much they can do. They are doing the best the can as there are far too many of us and not enough of them.
So adding more to your treatment plan is only going to help. Ondamed helps me. I also can't find enough things to try.
I wouldn't give up on your doc, as no doc can possibly do it all. They are just too swamped with patients, and they don't have all the answers but they know a lot. IMO, trying other modalities is mandatory if something is not working.
There are so many things to try: rife, ondamed, mild HBOT, asyra, photons, and first and foremost, parasite treatment. Without treating them people just spin their wheels. Also, a naturopath is another good one to add to the mix.
I like what Robin said about detoxing. Coffee enemas are really good for detoxing too. Great you got a FIR sauna, it really helps me.
-------------------- --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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