Disappointed, disillusioned, confused; Further research and TMI

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Veteran Member

Date Joined Apr 2009
Total Posts : 1304
   Posted 11/7/2009 6:05 PM (GMT -7)   

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?
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.

Post Edited (+Lyme) : 11/7/2009 6:17:52 PM (GMT-7)

Regular Member

Date Joined Oct 2009
Total Posts : 289
   Posted 11/7/2009 10:26 PM (GMT -7)   
I loved your post and i agree, but how do we demand help? I wonder what the government would do in response to a whole bunch of lymies sueing...sueing who? I'm too young to know how to do all this, way too naive, but i can tell you from the research i've done in general that different kinds spirochetes is not the only thing most of us would be dealing with- just like these millions of strains, there are millions of strains of parasites in general. stool tests only check for 30% and are terrible at detecting actual worms like tapeworm, roundworm... I asked an infectious disease doctor about this and he admitted that their labs are not good for that sort of thing. When the body loses control of lyme it also loses control of any other parasitic infection going on (which many people may not be aware they had-as most mimic IBS symptoms, bloated abdomen.) but anyway this might be why (just my hunch or impression)  denise (deejavu) posted about doing a parasite cleanse and colon cleanse in her detoxing tips which i believe is on the sticky that Cajungrl put for newbies. I cannot speak for deejavu but as for myself, I recommend this to everyone b/c there really is no ACCURATE way to know what other microscopic parasites you might be dealing with.
Note- i believe Dr. Cowden talks about this,  not sure, but i'm pretty sure Dr. J's book says something about it.  Have to double check but i think Dr. Cowden says thats why Samento among others is a good herb b/c it address multiple things- viruses, parasites, lyme microbes...
Other Note- i am not promoting or affiliated with nutramedix in any way! LOL.  :) but i know there has been another post about this from someone else- nutramedix will give you 6mths free of their stuff with a Doctor's diagnosis i think you have your doctor fill out a form and then you can get the stuff.  Call nutramedix about this though as i did not see anything on their website about it.

I refuse to stay sick! Period. 

Post Edited (finding721) : 11/7/2009 10:42:39 PM (GMT-7)

Regular Member

Date Joined Jun 2009
Total Posts : 22
   Posted 11/7/2009 11:12 PM (GMT -7)   
You absolutely need to see the documentary "Under Our Skin" - Sometimes you have to see it more than once to truly understand what is going on - also there is a book called "Lab 257" that will make you sick to read, but the documented evidence is half of the back of the book. Just think, the military has known about this for more than 20 years. And I'm not saying anything bad about the military - LOL - I come from a totally military family. But if you are able to look up what their fatigues are made of, you will see that they are "impregnated" (hate that word) with the tick killing substance called Permetherin (sp?) and the soldiers were also issued certain night glasses to be able to see where the hot spots were for ticks so they could avoid those areas. Ticks are sensitive to carbon dioxide (as animals and humans breathe out) and heat (which we also have). Interesting anyway. I told my dad if he's going to work in the yard (that he has sprayed for ticks every month) then he should buy some of the fatigue pants that have this premetherin already in it.
I'm still scared to walk in the grass and definitely stay away from the leaves. Cats stay inside permanently and, what else can you do???

Nicky D
Regular Member

Date Joined Jun 2009
Total Posts : 361
   Posted 11/7/2009 11:28 PM (GMT -7)   
Hi +Lyme,

The problem with Dr.'s losing their license isn't because of treating patients they haven't seen- it's for treating Lyme. Period. Doctor's risk getting investigated as soon as they treat for more than 4 weeks. Many LLMD's do not accept insurance because many investigation stem from complaints from insurance companies. If the LLMD doesn't accept insurance, they decrease their risk.

That being said, there are some doctor's who stand up publicly and try to talk about Lyme. Dr. B (of New York, now retired, the super-famous one), was someone who did this, as is Dr. J. Unfortunately, both those Dr.'s and nearly every other well-known LLMD has faced investigations because they do not follow the IDSA guidelines for treatment for Lyme disease.

Veteran Member

Date Joined Apr 2009
Total Posts : 1304
   Posted 11/8/2009 11:31 AM (GMT -7)   
I have brought this up before because I don't get it: My father acquired enterrobactor clocae infection from hip replacement surgery.  It was horrible, the worst thing my Dad has ever endured.  His ID Dr has told him he will have to be on Cipro FOR LIFEFor life! 
Also, please note that my Dad has been ill ever since.  My dad is a brilliant mathematician, but never cares or thinks to ask for copies of his labs. All he knows is the his ID Dr has tested  him for 'everything' and cannot find what is wrong.  And he's been sent on his way.
Therefore the IDSA is not opposed to long term abx treatment.
Why have they chosen to pick on Lyme?
Kristiana, I'm not going to be able to purchase UOS. Between my LLMD, paying cash for some of uncovered labs, and a dental emergency (that will end up costing over $2000) I am out of cash and credit. I am not destitute, like others on here, but I'm out.  Maybe after I get my car paid off, I will declare bk, I don't know.
I could ask for it for Christmas, but then I'd be choosing that over a total house deep cleaning.....  tough choice, huh?
So again, why Lyme?  Why are they so closed minded about lyme in particular?  That would not necessarily be an admission to lab 257.  It would just be an admission that because of ticks we have a big problem.
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?
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.

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