Is There Any Hope For Me?

Hi I have gone to hell and stayed there with lymes disease creeping over me. It all started when I wasn't feeling well two years ago. I went in and they found out I had lymes. They properly treated me, however a week after the full treatment, my body was bombarded with insane amounts of pain and has yet to return to normal. I have gone on a two year long adventure, going from doctor to doctor, WASTING thousands of dollars, getting told nothing is wrong with me and they can't help me.

My symptoms:
-Cronic pain all day everyday, which brings on fatigue, anxiety, and so forth. The pain will flare up at times.
-I will sometimes get very shakey (shaky) to the point of where if I were holding something with text on it I wouldn't be able to read it.
-I get very sick feeling when I smell strong things, even things like brownies in the oven. This creates difficulty when eating.

When I awake in the morning my legs feel so tight it feels like I cannot stand up. They have intense burning and stinging pains in the legs, around the knee. I cannot stand up vary well without stretching, and I get very mixed feelings of relief and pain when I stretch. My back has a non-stop burning sensation in and around the shoulder blades. This feeling causes me to sweat heavily in the upper part of my body, even if I am very cold. Living in wisconsin, there is a lot of cold weather, which flares up my pain. When the temperature approaches 40 degrees I feel lots of pressure around my body, like I am deep in water. The pain throughout my body will become very intense in the cold and I will begin to shake uncontrollably, yet continue to sweat in my upper body.

I have been told, maybe 15 times, that I DO NOT have lymes. They claim there is no way you can have lymes if you meet these conditions:
1) There is no swelling of joints
2) no rashses
3) I am depressed (They say that! NOT ME! I AM NOT DEPRESSED!!!!)
4) I have poor sleep habits (BECAUSE OF THE PAIN)
5)Not having a blood test from when I was younger, proving I didn't have lymes anti-bodies in the past.

No one will help me! The only thing that keeps getting suggested to me is that I am depressed! They offer me many, many, many mood pills, but nothing to do with pain! I am in pain! I cant stand this anymore. This Lymes Disease thing is a sick joke that people are profiting off of!

[JackieCalifornia]

Welcome -- sorry to hear what you are going through.

You say:  "They properly treated me, however a week after the full treatment, my body was bombarded with insane amounts of pain and has yet to return to normal."

-- What were you tested for?

-- What was the specific diagnosis? -- Lyme only?  anything else?

-- What meds were you treated with, at what dose, and for how long?

That information will help us understand your situation better.  We're not medically trained here, but happy to share our experiences with you --  we've been where you are --

Hang on!    

[tkazi]

Hi and thank you!

I've been tested for many things, some I can't remember. All vitamin and chemical levels have been checked and are normal. I was tested for arthritis, MS, hyperactive thyroid, heart problems (I had an ultra-sound performed), depression (I talked with a therapist for days and took cognitive testing), and lymes. Lymes was the only thing that came back abnormal.

As far as diagnosis goes, there is a large variety: Lyme seropositive, Generalized pain disorder, Poor sleep pattern, Dizziness, Marfanoid habitus, Marfan's syndrome, Chest pain, Anxiety disorder.
(what I don't understand is why am I being diagnosed for these things and then not being treated???)

The first round of medication I received was Doxycycline, which was a dreadful experience, however I finished the prescription 100%. Then after about a month I was told to try another round of antibiotics called Amoxicylin. I felt great for a week after I completed these medications, then the pain came back worse each time.

From there I have been prescribed cymbalta, gabapentin, cyclobenzaprine, asprin, ibuprofen, 5-HTP, and others....


I appreciate your response. I am very frustrated and have been treated like dirt in medical facilities after I mention lymes disease.

[JackieCalifornia]

Believe it or not, your experience sounds much like what many of us here have been through.  Lyme was first identified about 25-30 years ago, by some docs who noticed people with unusual symptoms around Lyme, CT.  These docs realized the collection of symptoms they were seeing had commonalities and formed the initial impression of Lyme as hard to get and easy to cure with a couple weeks of antibiotics (often doxycycline).  Despite advances in understanding since then, these original docs are still practicing and are very influential in the IDSA (Infectious Disease Society of America), which sets the agenda as the authoritative group for docs to turn to when figuring out how to diagnose and treat infectious disease.  

The standards of diagnosis and treatment that were formed those decades ago are still honored by the IDSA in its standards for diagnosis and treatment, and docs tend to adhere to those standards, because after all, it's the big wigs who set up the standards, and who would know better?  

Sadly, closed minds and hard hearts arise in MDs sometimes, and there is a war going on in the medical community.  If you have the energy for it, I highly recommend a book, 'Cure Unknown' (inapt title, but very well written) by Pamela Weintraub (look it up on Amazon for a description and summary), and if you cant' handle a book yet, then you could view a documentary called "Under Our Skin."  Book and video both explain the mess the medical profession has made and continues to make with Lyme and other diseases carried by the same tiny ticks, so small as to be almost invisible, but nasty creatures nevertheless.

The standard, IDSA-approved cure for Lyme is a couple weeks of doxycycline, which you have had.  IDSA also says if you are not fully well after that, your immune system is over-reacting to a now-gone infection, and further treatment is not warranted.  This 'post-Lyme syndrome' makes no sense to me:  if you continue to have symptoms after treatment, then you are probably not cured.

Enter ILADS, a competing group that takes the opposite view from IDSA.  ILADS (Intl Lyme and Associated Diseases Society) has a website at ILADS [dot] org, and in there you will find Burrascano's treatment guidelines.  It rambles a bit, but you may see many of your symptoms there.

In your situation (and I am not medically trained), I would find a Lyme specialist, sometimes called by us the patients an "LLMD", which is patient slang for Lyme-literate MD, meaning a doc who thinks broader thoughts about Lyme than ILADS.  An LLMD does not use that title, and can be from any discipline, tho are seldom found among infectious disease docs and rheumatologists, who are locked into the earliest impressions of Lyme as a passing bug that goes away easily.

Lyme is caused by a spiral-shaped bacterium similar to the one that causes syphilis, which is of course a very serious infection.  The spirochetes wiggle their way through the body and find places to hide (e.g., in cartilage) where the immune system does not easily see them, and what the immune system can't see, it can't kill.  NonLLMDs don't get that concept.  LLMDs, in contrast, often treat with a combo of antibiotics, one to pierce the slimy shields the Lyme bacteria hide in and the other to kill the bacteria.  Among the killing drugs:  doxycycline, which you were given.

Doxy works best in the early stages of infection, but as long as you have been sick, the bugs have probably moved into the protective biofilms they create in the body, hence the need to pierce the slimy bioshield (often with Flagyl or another similar med), and then with a companion med (doxy or something similar) to do the killing.

Unlike most bacterial infections, a couple weeks of antibiotics don't cut it with an established case of Lyme, due not only to the bioshield, but also to the fact that all bacteria are most susceptible to being killed when they cell wall is split during reproduction.  Lyme has a very slow reproductive cycle, so there are fewer opportunities for the killer antibiotic (e.g., doxy) to get the bugs, so treatment needs to run not for weeks (like for an earache), but for MONTHS, so that the meds are on board and cover enough reproductive cycles to match what happens with bacteria with much shorter cycles.  This is accepted by all docs in the case of tuberculosis and leprosy, but not in the case of Lyme -- once again, we are hampered by the docs who are operating by outdated standards of treatment.

Bottom line:  in your situation, I would
1-- find an LLMD
2-- get a work up with the LLMD and based on your symptoms and history,
3 -- get tested for the likely infection(s) -- Lyme often is accompanied by the other infections which are carried by the same ticks
4 -- get treated, sometimes for a year or more
5 -- get your life back.

An LLMD will know to test, based on your symptoms, for other diseases carried by the same ticks, which need separate diagnosis and treatment.  The symptoms get all tangled up and confused a doc who is not knowledgeable, which is why you need to see an LLMD.  Sometimes it also takes time for somewhat hidden infections to come to the fore:  Lyme can suppress your immune system, and some of the standard tests measure only your immune system's reaction (i.e., indirect measure), and not the actual presence of the other infective agents (i.e., direct measure).  

Well, that's more data than you need to get started, but it will start to make sense.  Find an LLMD, and take it from there.  Because Lyme is a developing and still not fully understood infection, not all docs are equally adept at diagnosing and treating, so sometimes you have to change docs in midstream.  Just keep your antennae out.

Best wishes, and let us know how you do and what questions you may have.  We've all been where you are, in some shape or form.  

[tkazi]

Hi! Thanks again, that was quite some information, and highly appreciated.

I have already seen two Lyme-specialists and two infectious-disease people. The first lyme-specialist I saw was at the Gunderson Clinic, which is supposedly the Lyme-heaven of wisconsin. He literally saw me for 20 minutes. He asked a couple questions about my symptoms and said that it is impossible for me to have ever developed lymes since I haven't had swelling joints. He then suggested it was neropathic and sent me to a neurologist.
Then neurologist (who was the nicest doctor out of everyone I had seen) tried and tried and tried. She the literally told me she doesn't know what to do. At this time I saw two other infectious disease specialists who both did the same thing; they told me its not lymes because I don't have one specific symptom and sent me back to neurology or rhumatology... Then my neurologist found another lyme-specialist for me to see.

This was the most frustrating visit ever and made me want to give up on ever finding a cure:
My visit started off by him walking in the room laughing and asking "So why are you here?" I then, puzzled by why anyone would do that, said, "I'm here to try and get help for my all-over, all-day, pain."
I said it like that because I assumed he was lyme-humored, like all the other doctors around here.
He then stated, "Oh well it says here you got sent here because you think its lymes," chuckling.
I then explained how BOTH me and neurology think it is Lymes, because neurology doesn't know what to do with me and don't understand my symptoms.
He then explained to me for an hour how lymes works and how the tests work. He then explained how if there is no blood result test from the past concluding I didn't have lyme-antibodies in the past, there in no way of telling if the lyme anti-bodies in me now were always there, or if you actually have developed lymes. Then he told me there is nothing he can do for me, and told me I should see another therapist because I am depressed and have anxiety (He stated that, never did I say that. I told him over and over again then I am not depressed). He then stated that even if I had more supportive data to support the idea of me developing lymes, there is still no effective standardize treatment for me, other then the treatment I received.

Then my neurologist tried to get in contact with the lyme-specialist I saw first, at Gunderson. He boldly stated he would not make an appointment with me nor treat me. Now my neurologist is fearful of her license and doesn't want to see me.

This doesn't make any sense... isn't this like discrimination... no one will even listen to me :(

I did watch Under Our Skin a while back, and now its a terrible nightmare that it is actually happening to me! That documentary made me feel really bad for those people... now I'm one.

[JackieCalifornia]

Hi, thanks for the message back.  It helps me understand where you've been.  Now to figure out where you go! .....

I think what you may be running into with all these docs is that even the docs who don't understand Lyme at all truly believe that they do, therefore they ARE "Lyme specialists".  Legends in their own minds, if you will.

There is no membership test or secret oath to be an LLMD .... and any doc who works in the area(s) of neurology, infectious disease, rheumatology, etc., is justified in calling him/herself a "Lyme specialist" or a "Lyme doctor."  It's just that these well-meaning folks don't see the world the way an ILADS doc would.  This is the great divide between ILADS (Intl Lyme and Associated Diseases Socy) and IDSA (Infectious Disease Society of America).  These groups both claim the same turf, and each believes the other to be the usurper --  the pretender to the throne.

There is no overall body who says which group (IDSA or ILADS) is the king and which is the usurper -- so you are left to decide based on their affiliations and their statements and approaches.  Any doc who belongs to ILADS is 90% likely an LLMD, but there's still that outlier 10% you have to watch out for.  The other 10%, like the nonILADS or IDSA docs, believe that they have the truth in their hands.  So you are stuck in the middle.  

This problem is not insoluble, but the first thing to do is stop believing that just because a doc says s/he is a Lyme specialist does NOT MEAN the doc is an ILADS kind of doc.  There is no test anyone takes to be an ILADS doc, and even among ILADS docs, you'll find variation in approaches and methods and beliefs.

So:  stop believing they are ILADS-type docs just because they say they are "Lyme specialists."  Okay?  Sorry if I'm beating you up here, I know you've been through the mill already with the docs, but this is a critical step to make the rest of it happen.  (I can talk:  I went through 20+ MDs before I figured it out.)

The Gunderson guy:  he would be off my list of possible docs.  He doesn't think you have Lyme, and sent you to a neuro.  He also said you didn't have swollen joints, therefore it's not Lyme:  wrong.

The nice lady neuro is sadly off the list, because while she is willing, she is apparently also afraid of Doc Gunderson.

Neuros and rheumies generally are not LLMD material.  Keep moving.

The next Lyme specialist you saw parrots the IDSA approach, and seems to believe that continuing symptoms after treatment are an overactive immune system reacting to a now-vanquished infection.  He thinks you are just depressed -- well, I would be too. This is not an ILADS kind of doc.  Keep moving.

You need an ILADS doc.  Not just a doc who says 'I'm a Lyme specialist.'  You know the old saying that the devil can quote Scripture?  That's what you're getting from the supposed Lyme docs ... they truly believe they are good Lyme docs, or they would change.  Keep moving.

I just googlesearched

                       wisconsin LLMD

and got a ton of hits, mostly people looking for an LLMD, but in that morass, you may find the right doc for you.  Just keep sifting through the comments and message boards, and contact Lyme patient groups who post.  You MUST keep your BS indicator set very high, tho.  I just opened up one of the links in that search, and I wouldn't take my dog to them.  This is the wild west of medicine, and you must be skeptical.

First thing:  send an email to

              contact [at] ILADS [dot] org

and tell them where you are and where you can travel to (which cities/states) and they will, so I hear, send a name or names of docs in that area.  ILADS membership is a good indicator, but not perfect ....

Also search through patient-oriented websites like this one, and keep your skeptical hat squarely on your head.  

When you have seen an LLMD, feel free to come back here and outline the recommended approach from the doc, as to testing and treatment, and we will tell you how it compares with our experiences.  Many of us have found excellent LLMDs, and while they are all a bit different, after a while, you can begin to discern the quacks and self-promoters from the genuine seekers of truth who are good docs reaching into a new area.

Don't worry about Under Our Skin.  I didn't really care for the movie, but other like it.  If you saw it before it was re-edited to add happy endings for the ailing characters, it was very gloomy ... I hear it's less horrific with the new, follow-up endings post-treatment.

Are you taking any supplements and vitamins?  Lyme bacteria, so I read, use up magnesium (Mg) at a high rate, and so it's easy to become Mg deficient.  That can lead to muscle cramps and pain, and heart irregularities, since the heart is a muscle.  Mg is needed to carry messages from one muscle cell/fiber to the next.  Any kind of Mg ending in "-ate" is supposed to be most absorbable, and I found some worked better for me than others.  I currently (still) take Mg citrate, aspartate and orotate all in one capsule marketed as Mg CAO, and it suits my metabolism, but everyone is different.  Also the American diet tends to be short on Mg generally, so Lyme just piles on.  Use reasonably good brands of supplements and vitamins, not the junky stuff.  It really does make a difference, and I would not have thought so.  Okay, it's 2 am, gotta go.  Sorry for any typos, too late to proofread.

Hope this helps -- do not give up. Do Not Give Up.  

[mojogal]

Hi, welcome and sorry you are here. Jackie gives wonderful answers.
I have just started treatment in March so I have or had many of your symptoms. Brain fog is one major side effect and more so because of the co-infection of Bartonella.
It is not in your head. Ditto everything Jackie said.
It took me a long time to watch " under my skin" please don't dwell on it.
I met one of the girls on "under my skin" on Twitter. She was the young girl who couldn't walk down stairs but slid down. She is doing great now compared to where she was in the movie.
Please don't give up. We are here for you.

[tkazi]

Thank you, thank you, thank you! I will do as you suggested and keep in touch.

I can't thank you enough for replying. I sorta felt like these doctors were a little uneducated, but I have been starting to develop learned helplessness about the situation. It's nice to hear this from you. :)

I was taking vitamin d, vitamin b, and magnesium. But i was taken off all of it when I was put on anti-depressants. I will be sure to start up the magnesium again though, since I'm off the anti-depressants and I already got a huge bottle of it.

[tkazi]

Thank you! It's great to hear things from people that have gone through it.

[Ricobord]

So sorry what you have been through. It does indeed sound like you now have late stage Lyme Disease after being undertreated.  Some call it "Chronic Lyme."

It sounds like the "Lyme Specialists" you have been to were Infectious Disease doctors.  The IDSA is still stuck on its fixation that Lyme is a bulls eye rash and sore knees, that negative blood tests exclude it, and that a month or so of antibiotics always cures it.  

They are told by their Lyme Committee that if a Lyme patient still has symptoms after a month or so of treatment, then it either wasn't Lyme in the first place, or you have something else that they can't diagnose.  You don't fit their other claim of an immune disorder called "Post Lyme Disease Treatment Syndrome," because that involves joint pain.

(Note: I never had any joint or muscle issues with my Lyme. I have neurologic Lyme with Bartonella.  Having both usually results in more neuro and GI symptoms than Lyme alone.)

It is unbelievable that this is happening in America. Until people go through it themselves, it is hard to comprehend.  I still don't understand how a doctor can look at a miserably sick patient and either laugh at them or be rude to them as they refuse a diagnosis, even when the patient has the symptoms and is testing positive for the disease!!  I am an honest person, but if I were treated like you were, I would feel no qualms about going to a new doc and saying that I had a recent tick bite.

I am quite surprised that one of your docs said you can't have Lyme without joint pain.  That is absolutely not true, and even the IDSA acknowledges that.  Which means he is making that up as an excuse not to diagnose you with Lyme.  The reason some won't see you anymore is that they are indeed fearful of losing their license.  In some states, doctors are hauled up in front of medical boards if they are caught "overdiagnosing" or "overtreating" Lyme Disease. In a handful of states, doctors are protected from this. I don't believe Wisconsin is one of them.

I am also surprised that they are demanding negative prior blood tests for Lyme to prove you didn't have antibodies before. That is a new one!  It is really absurd. Especially when the IDSA says not to test unless a patient has objective symptoms and can prove possible exposure or show a bulls eye rash. Nobody gets a "baseline" Western Blot without having symptoms of Lyme, so how could you have earlier evidence? I think this is due to an erroneous belief that you can show lingering antibodies after an infection has cleared, and that they can linger for several years.

The mass hypnosis of ID docs is probably due to the fact that the IDSA does not tolerate dissent within its ranks when it comes to Lyme. They actively discipline doctors who go beyond their diagnostic and treatment guidelines, which means they might lose their membership in the IDSA, hospital privileges, insurance contracts, their practice, and possible even their license to practice. Not many doctors are willing to go up against that machine, knowing they could lose everything.

Neuros and rheumies can be a bit more sympathetic, but not many of them. You will need to go to a LLMD for the long term treatment you need.

I hope that when you feel a bit better, you will join the ranks of people complaining to their elected leaders, their state health department, the IDSA, the CDC, and the NIH about how poorly you were treated.  There is no excuse for their blindness, and even less excuse for their contempt. Only when our voices are loud enough will the status quo change.  

You can also try to locate a local Lyme support group. They often know who is good and who isn't for treating Lyme.  Be prepared to go out of network or to travel if you need to.  I that is what it takes to get well, then do what you must.  You can get well, but only with the right doctor.

Be sure you also get tested for a Bartonella and Babesia.  They are the two most common coinfections.

Also, have you been tested for Marfan Syndrome? It is a genetic connective tissue disorder that can be serious. Any doctor who throws this at you without proper testing, explanation, or further examination is incompetent. People with Marfan can die suddenly of heart valve failure, although they can also live long productive lives.

If you do have Marfan, you need a thorough check up with a cardiologist who knows what to look for.  Lyme disease likes to live in connective tissue as it is a preferred low oxygen environment. I am no doctor, but perhaps Lyme infection with Marfan is worse than having just one of them.

[mojogal]

Great answer!

When I grow up I want to be like you and Jackie. lol

Maybe after the fog brain lifts!

[nutrinut_bob]

Before you waste anymore money, get tested for toxoplasma gondi.  It's far from rare, however Drs don't really know the long term effects these vermin have.  The reason I am writing this is your mention of the burning sensation in the shoulder blades, which could be the trapezius muscles.  From observations that my cousin and I have made, we can pretty much tell which of his way too many cats are infected by the amount of muscle loss there.  They don't eat the muscle, they just shut off nerve impulses to them and they atrophy.  My cousin noted that he could tell which of his cats were near death by the amount of those muscles lost.  Note that toxoplasmosis is something that can also be transferred by ticks.

[tkazi]

Thanks for the reply.

I suggested co-infection and they would ramble off about how co-infection is "impractical since I never saw a bulls-eye rash," thus making the fact of getting biten by an infected tick even less practical, and how it has been to long to test for co-infection, and besides "there is no good test for co-infection yet!" (*face-palm*)

As far as Marphan's goes, I don't know! I was "diagnosised" with it by a rheumatologist who sent me to a cardiologist to get looked at. I had a ultra sound of my heart done, and the cardiologist told me "We looked, and looked, and looked, and found everything to be normal." She then told me she doesn't really think that it COULD be Marphan's. And so I asked, well does that mean I don't have it? And she replied, "Hopefully." Sooo, I don't know what that says really. lol To me I hope it mean I don't have it, especially since I am not receiving any treatment or medication for it.

If I ever get better, I would give up much of my life to help fight this mess. I mean this dam thing is killing me and I have lost every bit of my life from it. Making ANY improvement would amaze me greatly as I have experienced nothing except worsening pain and symptoms.

I have been contacted by someone from the IDSA team. :)

[JackieCalifornia]

I would mention to the Lyme doc you end up working with the possibility of Marfan, so that the doc can take it into account in structuring your treatment plan and in keeping a watchful eye for any issues that might arise.

A good Lyme doc is humble enough to know how much is not known, and to keep a 'weather eye' to possibilities not yet manifested.  

The most important thing, in my experience, is to find a wise doc who knows his/her limitations and the limitations of science and medicine in their current state, and keeps "working the problem" (as an engineer once explained to me) by continuing to ponder, make plans, take action, then modify the plan based on additional information gathered.  

Your already thoughtful approach to your situation bodes well.  Keep us posted!

[Ricobord]

I am so sorry to hear of your odyssey with multiple doctors. You must be incredibly frustrated. Hopefully I didn't rant too much in my previous comment. :)

If you can get yourself to a well regarded LLMD who follows ILADS guidelines, you will probably feel enormous relief.  Its such a huge comfort to talk to someone who truly understands. You can get your life back, it just won't be with your past or current docs.  Don't worry anymore about doctors who can't or won't help you.

We are taught to respect and trust doctors. It is hard to defy them, even when deep down inside we know they are wrong.  Someday the Lyme Disease house of cards will come down, and a lot of doctors will have a hard time reconciling how they treated Lyme patients with the oaths they took as healers.  

Nutrinut Bob's recommendation to get tested for toxoplasmosis is a very good one. (Thanks for that info, Bob. I didn't know that about the trapezius muscles.)  If you have it, proper treatment will help you feel better. But with your ongoing positive Lyme tests, there is a good chance you still have Lyme, too.

I hope I wasn't too blunt in my comments about Marfan Syndrome. It sounds like your rheumie was exploring the possibility rather than diagnosing you. She must have been grasping at straws. If the cardio couldn't find it, it sounds safe to assume you don't have it. It is interesting though, that the rheumie came up with a connective tissue disorder.  When Lyme infects connective tissue, it acts like a connective tissue disorder.

That is good news that your heart looks okay. I have had a lot of tachycardia (and high blood pressure and a pounding heart beat) and a cardio said my heart looked normal, too.

If you are up for reading, "Cure Unknown" by Pamela Weintraub is an excellent book on the evolution of the Lyme controversy as well as her own family's experience with Lyme and coinfections. She was a respected science writer and editor before she wrote this book, and she did a great job on it. I couldn't focus enough to read it until I was 2-3 months into treatment.

Keep us posted!

[gibsongal]

welcome and sorry tkazi..i have had a bunch of negative tests. IDK.. same symptoms as everyone else. had few good weeks on ABX and now it, the pain has come back.

Doc is switching some other meds i take for another illness, thinking it is causing the bone and joint and muscle pain. only took him all year to decide.. may take a few more weeks to see.. IDK the fatigue the mind the pain and the 15 months so far on the doc merry go round...

stay positive..take lots of baths and rest,, eat when you can.. I find it hard to eat and drink when i am  sleeping !

[tkazi]

So I, apparently, can't get an appointment with anyone without paying over 350$ as an upfront cost, and I even got insurance now that isn't Security Health (I was told $750 upfront at some places after telling them about lymes). Clinics deny my insurance after I mention my name and claim they do not accept any kind of insurance when I ask. So I have giving up on doctors because I can't pay $750 for a doctor to tell me that I have lymes or something and give up on me!

I am going to collect all of my medical history and look at it myself. And I have a problem even with that. I have been denied my medical history multiple times and have paid so much money just to get some of it.. I feel like I am being taken advantage of and I don't understand how any of this is happening.

XC

[nutrinut_bob]

So how old are you tkazi?  Old enough to have been given the polio vaccines that were contaminated with SV40?  Those were given to lots of us circa 1955-1963.  For more info, follow the link in the post below titled, "As if we didn't have enough...."  Wisconsin was one of the states with the contaminated vaccines.  The first thing SV40 does is shut down what would be a normal response to intracellular infection.  That allows everything else to get in.

[Ricobord]

It is true that many LLMDs do not take any insurance. They get hassled too much.  In the "Under Our Skin" movie they say that insurance companies have filed complaints against doctors with their state medical boards for "overtreating" Lyme patients. They have threatened to drop doctors who diagnose Lyme "too much" and have sued doctors for fraud for treating Lyme patients with long term antibiotics (the most notable case being Dr. Jemsek).

At my doc's office they will deal with insurance companies to some extent, such as attempting to get prior authorizations, but they said dealing with them is usually a nightmare. The insurance companies are very inconsistent and complicated, which is true of mine. Sometimes an agent will deny something that a different agent approved. The insurance companies don't want to pay any more than they have to, but they don't want to get sued by the patient either. (The park ranger in "Under Our Skin" sued his insurance company and won.)

I know this doesn't help you much, but it does give some context. I think paying for a consultation up front is obnoxious.  I did have to pay a deposit. That's because they want to minimize their no shows as they have a waiting list.

Have you checked with a local Lyme support group, or a state or regional Lyme foundation?  Sometimes they have names of doctors within insurance plans who are willing to order IGeneX tests and to diagnose Lyme. Some are even willing to get you started on abx.

It is against federal law for a medical professional to deny you a copy of your medical records.  HIPAA is the law that says you are entitled to a copy. There is lots of documentation online. Find a page that spells it out and send a copy to any office that refuses to give you records.

This page is a good place to start.  It says at the top that with few exceptions, you are entitled to copies of your records.  You can dig deeper to find more specifics.

http://www.hhs.gov/ocr/privacy/hipaa/understanding/consumers/medicalrecords.html

Also, check with your insurance company about your costs for out of network care. Some insurance companies will reimburse part of your doctor visit costs and some or all of your meds prescribed by an out of network doc.  Paying something out of pocket is worth getting your life back. I would have started selling stuff if that's what it took to get treated.

[tkazi]

@nutrinut_bob - I am only 18 years old (1994), so that is unlikely. However that is around the time both my parents we born in Wisconsin. Thanks for the thought!

@Ricobord - Thanks for the information. I will send something to these doctors to attempt to get my medical records. I doubt it will do anything though.. I have sent multiple forms to get my records in person and via telephone and they typically never respond after I submit the application even though they are supposed to send me a letter in writing stating their decision within 30 days. It seems as though I supposedly signed something when I visited the clinic for my first time that gives them a right to deny me my records for any reason.. lol I don't know how legal that is but they are doing it.. to me.

I don't trust doctors anymore... they all just put me down and tell me I am a mental case. I will try to find some sort of support group in the mean time...

Thanks for the advice.

[JackieCalifornia]

http: / /www. hhs. gov / ocr / privacy / hipaa / understanding / consumers / medicalrecords . html

If you take all the spaces out of that link, it will take you to a page on the US govt Dept of Health & Human Services (HHS) website that says you have a legal right to copies of all your records.

Take quotes from that website and include the link to the website in your letter requesting complete copies of all your records, including test results, clinical notes and impressions, and all other materials contained in your files, not just the most recent information.

Use those phrases in your letter to them, and see what you get back.  If you still think something is missing, send them another letter and remind them that you are entitled by law to the copies.

Address the letter to the doc you saw there and also mail a separate copy to the office manager, even if you don't know the office manager's name.

In other words, press ahead on all fronts.

And going forward, always have in your hand as you leave a doc's office copies of ALL test results.

[Ricobord]

I am not convinced that a doctor's office can ask you to sign away rights to copies of your medical records in advance.  Definitely do what Jackie suggested, but make sure that you write a letter informing them that you will be filing a complaint against them if you don't get a copy of everything within xx days.

I don't know if your parents can help in this regard, but a phone call from one of them demanding to know why they won't provide copies might help move things along.