After just over 2 months of heavy abx doses, I am feeling some relief for almost 1 week. As some of you know, I am in and out, up and down. Halfway thru these abx either I herxed or experienced a cycle of worsening symptoms.
I was referred to a Family Practice said to be 'knowledgable of Lyme'. Since I could not afford the LLMD, thought this might be a good idea --- getting a new, fresh look at my symptoms, hoping for new scripts, at least for Lyme and thyroid. First, the Dr laughed out loud. What gave the Lyme Association the idea that he knew about lyme? He didn't know much about lyme and 'NO ONE knows much about Lyme because it is so rare. In fact, there's only been a single handful of cases of lyme in the whole state of KS!'
When I asked, then why is it impossible to get into a Lyme Doctor in KS because they are all overbooked w/ Lyme patients, he kinda snickered and had no answer.
And then, the look and the sneer you all have come to know so well: 'So..... what makes you think you have lyme?' (Note: I sat w/ a stack of labwork on my lap) He had no knowledge of the WB. When I politely asked about the absence of readings on appx 10 lyme specific bands, and the positive reaction on Band 39, he simply said that could be any other type of infection. He said the CD 57 may show some immune suppression that could be from just about anything. He said my high WBC showed my immune system was doing 'well'. (catch the contradiction?) He said that almost everyone has elevated antibodies to EBV. He did not know what HHV6 or Parvovirus B19 were. He freaking drew me graphs of bell curves like I was an idiot!
Just like all of you, I am so sick of this crap, I'd just as soon die of it.
I have talked to my intelligent (and cynical) son a lot about this. He had driven me to my last LLMD appt. He saw the disorganization and lack of any professionalism of this little Dr's office. It was a mess. He could hear the Dr talking to me, zipping thru my labs, writing off scripts right and left. He (son) knew that something was wrong here -- that this Dr would not even try billing my insurance company, that he only accepted cash up front.
I know this concern has been posed here before and I agree -- that there are Drs out there who only see the kind of money they can earn diagnosing and treating Lyme. No insurance, no mess, no fuss.
I am not insinuating that every LLMD is a shyster (?) But there's cheaters in every profession out there.
I realize that many of you are already accustomed to this, but I still have a big question regarding MDs who do not take insurance. Afterall, my insurance company did not balk at the high dose of Amox for over 2 months, preceded by a month of Doxy. They did not balk at the lab tests he ordered. (except I had to pay for my own CD57 because that lab was not covered) He is a licensed MD. Maybe at some point, they would have questioned him, as well as the treatment w/ abx, but I don't understand the problem here.
On another forum, I gave another person the name of my ex-LLMD, which was immediately followed by a message from an officer that we were not to use Dr's names because they live in fear of losing their licenses.
Could someone please tell me what they are doing that is so wrong that they fear losing their license? I have not seen UOS, but have seen the clip of a Dr losing his license for a year and the clip implied that it was because he prescribed meds to a patient he had never seen. Regardless of the need that may have been present, I understand the point in that temporary revocation.
I understand that many LLMDs prescribe alternative treatments that may not be covered by most insurance. That is not what I am questioning.
My son, at one extreme is telling me that I must sense something is wrong here, if the entire remainder of the medical community is opposed to LLMDs. And it is not just because of their treatments. They are opposed to the point that they refuse to help a patient asking for help w/ Lyme. So my son, altho he does not deny the possibility (which is a certainty to me) that I have Lyme, but he is firm in telling me I must realize that all this is pretty fishy.
There is a 'reknowned' LLMD in my area who does not accept insurance and I have read old posts on this forum about her charging people literally thousands of dollars per week! I read a news clip that she is being sued by a couple to whom she gave about 20 diagnoses EACH. Some other Dr was somehow able to prove that she was bilking them for thousands.
I do not know enough to defame this Dr, but it is enough for me to realize that there are Drs out there swindling people.
When I told my son that I believe that the Truth is probably somewhere in between the 2 extremes, he did agree.
IMO, this is all heinous. I believe that it is just as bad that the LLMDs and researchers cannot stand up to and disprove the medical community that denies all of this, as it is for the medical community to turn its head away and close its mind. It's deplorable and I don't understand how this is happening.
Anyway, part of the point here is that while describing to my son the difficulties in detecting Lyme in blood tests and the difficulties in treating it, he led me to a lot of suspicion here (even tho I've been researching for 7 months now!). 'Mom, a bacteria that cannot be seen under a microscope without some kind of artificial lighting.... A bacteria that does magic tricks.... etc. Mom, please get real.'
So, briefly as I can, I have gone about searching info on spirochetes, instead of Lyme. It is bafflinig. And overwhelming and more information than anyone but a researcher could handle. I had looked at syphillis quite a bit before, but did more searches on it and the similarities are remarkable -- except for the part that late stage syphillis can be taken out w/ several good shots of penicillin.
I found research papers about so many different kinds of 'lymelike' diseases caused by spirochetes, it was completely overwhelming. As most of you already know, Bb is only one amongst others, but I could not believe how many others are out there.
And so we are sooooo limited as it is when testing for Bb, babesia, bart, and the others. There's over dozens of strains of the Bb and at least several of the others. So the different mixes of lyme and related bacterias, and co-infections could be close to zillions.
It is unbelievable, the bacteria that they have found, dissecting the guts of ticks, as well as cows, etc.
So, now I am re-convinced I belong on the side of the Lyme 'believers', but all of it is too scary. I think I now understand how and why so many of you have been in treatment for years w/ no improvement --- Because who knows what strain you may have, and to what it might respond? How will you/we find the answers??
Part of the answer could be in each and everyone of us hounding our insurance companies. I called our local rep and literally begged for a Dr they would cover. Even tho she never helped me, this is documented in my correspondence there. She never helped me. She never found a Dr that they would cover who could help me. She DID get me a little of my fees reimbursed. That is a start.
We are now looking at an unblievable, horrific mess. And it is absolutely scandalous the way our government and the medical community have reacted. We have got to demand more help on every single issue and level!
Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia, chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?