Lyme Disease Community
Lyme - My story thus far
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This forum is for questions and support regarding What Causes Lyme Disease, Diagnosing Lyme Disease, and Joint Pain. Topics for discussion also include Living with Lyme Disease, Babesia, Bartonella, Rocky Mountain Spotted Fever, Anaplasmosis, other Tick Borne Diseases, Nervous System issues, Prevention, Risk Factors, Skin Disorders, Symptoms and Treatments

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Lyme - My story thus far

Well to start this all off and like to say hello to you all. This is my first post here as I haven't known i've had lyme disease for too long, and I hope some of you are willing to read this long story i'm about to post. I'm a 19 year old male living in PA having a hard time coping with my recently discovered disease.

So on to the story, it all began about 4 weeks ago with an intense headache that was unbearable. On the 4th day of having this headache I finally said enough is enough and headed to the emergency room. After getting a catscan, lumbar puncture, and a few other tests doctors could not explain what was causing my headache. I was sent home, only for my headache to get even more intense the next few days probably due to the lumbar puncture. I ended up going to see my family doctor who diagnosed me with migraines and started me on a beta blocker, a steroid to get rid of the headache, and imitrex for when I was beginning to get a migraine. The headache finally ended on the 7th day of having it, and I was feeling good due to the steroid I was prescribed (which I believe was prednisolone). However, as soon as the last day of that steroid was over all of my horrors began. I started having chest pains with my heart always beating at about 95bpm even when resting and I began to get pretty scared, knowing that i'm 19 and pretty healthy and usually have a heart rate around 60 something when resting. I figured it was nothing and it would go away so I waited about 2 days, and then I started having weird thoughts and wasn't thinking straight and then I was really scared. I told my mom we were going to the emergency room, and on the ride there I spotted a rash on my right arm that I hadn't noticed before. It took about 5 hours in the waiting room before I actually saw a doctor, showed her my rash and she immediately knew that it was the typical EM bullseye rash that lyme disease causes. At this point, I felt relieved that the doctors had finally found out what was wrong with me. They prescribed me doxycycline 100mg twice daily for 21 days and sent me on my way. They did not tell me what I was in for in the next week of having this disease. I got home and started doing some research on lyme since the doctors hardly informed me about anything lyme related, and quickly realized how much more serious of a disease it was compared to what I was told. I thought back and got pretty angry at my family doctor for prescribing me that steroid, considering every day I was taking that the lyme was probably just thriving inside of me. After doing my research I was extremely exhausted and needed to take a nap so I did. Woke up a few hours later feeling horrible, with a 101.5 fever and just laid there and took some ibuprofen. The next few days I just laid in bed not feeling so great, and extremely tired all the time. My heart still wasn't feeling right, almost like it was overworking to pump blood throughout my body so I returned to see my family doctor. He gave me an EKG which everything was fine on and told me it was probably all due to the beta blocker and told me to stop taking it. I hadn't been taking the beta blocker for about a week before I went to see him for my heart, so I knew that wasn't the case. Then sitting in the room with him I broke out with a rash that looked like poison ivy all over my arms and was itching like crazy, so I showed him and he told me I had poison ivy. I told him that's impossible, I haven't been outside in weeks and he told me just to let him know if the rash got any worse. When I got home I did some research and found out that lyme can cause a-typical rashes that look like poison ivy. At this point, i'm really upset because I know i'm being treated by doctors that have no clue about lyme disease and some of its symptoms. My family doctor also told me 3 weeks on 100mg doxycycline twice a day was probably OVERKILL to get rid of lyme disease. That really made me angry, because I knew that the recommended dosage was much higher than 100mg and for longer than 3 weeks. From everything that I have read, the minimum amount of time lyme disease should be treated with doxycycline is 4 weeks because the lyme bacteria are reproduced on a 4 week cycle and you need to kill it in the bacterias growing phase. On about my 4th day of treatment on doxycycline, I began symptoms of bells palsy. I am now on my 6th day of treatment and my bells palsy is pretty bad now, half my smile is gone and my one eye doesn't move anything like the other but I can still close it. I contacted a LLMD and they want cash in hand because my insurance wont cover it and my family just doesn't have the money for that, nor will we ever so I feel pretty depressed and helpless right about now. Every doctor i've seen so far seems to think that this disease is no big deal, even though I continue to see new symptoms almost everyday even with the antibiotic treatment. I'm also so fatigued and tired I can hardly do anything, I need to take a nap everyday - sometimes multiple naps and my head is always a little foggy and my thinking unclear. I get mild headaches and the vision in my eye on the side of my face with bells palsy goes blurry every once in awhile. I'm concerned because I don't know if the amount of doxycycline i'm taking will be enough to kill of the lyme disease, and I also have concern for co-infections like babesia because I was not tested for them and from what I read about babesia I have a lot of the symptoms it causes. I don't know who to see, I can't find a LLMD my insurance will cover, I feel pretty helpless really and I still don't feel good enough to do anything I just sit around all day and nap.

Well that's my story so far, i'm sure I missed a few details and the story may be a bit unclear but it's the best I can do right now. Any input or help is appreciated, and I thank the people who actually read through the whole story considering it's so long. Thanks again.
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Avatar_m_tn
You have to go back w/ information in hand with the proper 4 week course of ABX.  THEN, do whatver it takes to get the cash to see a LLMD to have you on ABX for MONTHS.  Whatever you have to sell, or cash in, DO IT.  Do NOT hesitate.  You can get back whatever you sell, you cannot get back your health if untreated.
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Avatar_m_tn

I'm sorry to hear that you were infected with Lyme disease. It is a horrible diagnosis. I also realize the reluctance of doctors to prescribe antibiotics. Unfortunately, LLMD's are expensive. I do not know if you have acne or not. If you do, you could go to a dermatologist and get prescribed doxycycline for long periods of time. The only reason I mention this is because of your young age. Good luck, I hope you can get rid of the bacteria effectively. You do need to act fast. Lyme becomes harder to treat the longer you have it.
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Avatar_m_tn
Thanks for the tip! I actually do have acne so maybe if I saw a dermatologist I could convince them into prescribing me doxycycline.
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Avatar_m_tn


It is actually fairly easy to get long term antibiotics from dermatologists. Some will prescribe them for years. I'm not sure why primary care physicians are so reluctant to prescribe them. If I had Lyme, I would have no problem taking them for 6 months to a year. I would actually want to take it for that long.
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Avatar_m_tn
I would really like to take the antibiotic as long as possible, but i'm not even sure if 100mg is a high enough dosage. I've read that for the neurological effects of lyme disease (which have been the worst effects for me) it can take as much as 300-500mg twice daily to have enough of the antibiotic to enter your brain or something because the brain filters some of it out. It's just been a scary experience so far, and i'm not even sure if I have a co-infection or not because i'm pretty sure they didn't test for other bacteria in the ER. I'm just going to keep looking for a LLMD that may be covered under my insurance.
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Avatar_m_tn
1000 mg a day is necessary.  make sure you are taking 100 billion units probiotics 2 hrs AFTER taking antibiotics as per Dr Garth Nicolson.   There is a product called NT Factor that might be beneficial.  It repairs the Mitochondria and lipids in cells and helps with fatigue and keeping cells from "leaking" or running down , as a battery would.
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Avatar_m_tn


Be careful with the information you receive in regards to Lyme. You are very lucky to catch it so early. You do not need to get tested for Lyme at this point. I would say it is safe to say you were appropriately diagnosed clinically.

From what I have found, a lot of LLMD do not take all insurances and most of the Lyme treatment will not be covered. Some insurance will not even cover a western blot unless you test positive through an Elisa panel.

You should seek all avenues though. I don't blame you for being concerned.
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Avatar_f_tn
Welcome to MedHelp.  I'm sorry for what you have been through.

I agree with ewford:  seeing an LLMD is critically important, for diagnosis and for treatment.

Please do not take medical advice from a website such as this.  Comments like "You do not need to get tested for Lyme" and "I would say it is safe to say you were appropriately diagnosed clinically" should not taken as medical advice.  Any giving you advice like that is not doing you any favors.

Keep trying to find a Lyme specialist -- the sooner you do, the more certain the cure and the quicker it will happen.  The only thing more expensive than treating Lyme is NOT treating Lyme ... try another Lyme doc till you find one who will see you -- hang in there, okay?  Your observations and reporting of your symptoms are very well done, and being able to communicate that to an LLMD will certainly help the doc diagnose and guide treatment.  (The Lyme ticks often carry other diseases too, and they need testing and treatment different from treatment for Lyme ... )

Hang in there, keep trying, don't give up!
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Avatar_m_tn
Shes right, since Babesia is treated differently than Bartonella or Ehrlichia.  Also infectious Mycoplasmas need to be considered as well.

  Not sure if you know this, Michael J Fox told David Letterman in 94 that he had a "bit of Lymes in him"  he got the standard 4 week course treatment.   Now he "has" Parkinsons, or so he believes.  We here know the manifestations of Borrelia Burgdorferi and he probably was undertreated and what he actually has is Lymes.   Get treated NOW and do whatever it takes to see a LLMD
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Avatar_m_tn


I stated that he was clinically diagnosed. What do you want him to do get tested and spend $2000 on tests. What if the tests come back negative? Should he not seek medical treatment? You can't have it both ways. The information you provide is not rational or logical. You have drifted away from reality and are now living in a Lyme world. You will always think you have Lyme disease. Notice that I said think and not have. Every ache and pain you have will be contributed to Lyme. This will lead to you blaming Lyme for any deficiencies in life greatly contributing to lowing your quality of life.

Dermatologists can prescribe amounts of doxycycline that are recommended for Lyme treatment. Although these recommendations are based on the CDC guidelines, Lyme proponents dismiss any mainstream medical advice and will take extreme measures. My contention is that the bare minimum the OP should seek is CDC guidelines. A dermatologist will be more willing to prescribe long term antibiotics than a PCP. This is an option. LLMD's are VERY expensive. Some have spent their life savings on treatment. The LLMD in my area wants $500 for an initial consultation (NO INSURANCE ACCEPTED). Considering that medication, lab work, procedures, etc. will not be covered by insurance. It is safe to assume that the OP will have to spend a lot of money to seek treatment.

In no way am I dissuading him from pursuing this option. I am just giving him a VERY viable affordable option that is LEGAL and ACCEPTED by medical boards. The options you are advising have to be performed by medical professional that have to HIDE from their governing boards. If their medical boards find out, they would be subject to suspension of their license. That in it self shows how illogical and irrational Lyme proponents have become.  
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mjfmurry:

I'm sorry that you are having such a difficult time.  I think you are very smart to be so concerned and empowering yourself with knowledge.

You need to get treatment asap.  And, I agree with Jackie.  You need to properly tested because you could have co-infections too.  I went to a lyme conference recently where Dr. Burrascano was the lead speaker.  At the conference, I picked up a flier in the event that someone like you who needs testing and cannot afford it.  The information is as follows:

Lyme-Tap
Lyme Testing
Access Program


The Lyme Test Access Program (Lyme-Tap) is a nationwide patient assistance program to provide assistance for initial Lyme-related lab tests to patients who demonstrate true financial need.

For eligibility requirements, instructions and an application go to:
www.lymetap.com
or contact us at
***@****
Lyme-TAP P.O. Box 2238, McKinleyville, CA  95519

I have not used this program, but I urge you to contact them asap if you cannot afford to see a lyme literate doctor.  

I was just DX four months ago after a year of different neuro symptoms suddently appeared after having my gallbladder removed.  

Keep us updated please!

Carrie
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Thanks for that good lead, Carrie!  I wasn't aware of Lyme-TAP.
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Avatar_m_tn
Thanks for all this info guys, I really appreciate it. I'm 100% sure I have lyme disease so arguing over whether I should get a test for that or not is pretty pointless lol, though I do wish I knew if I had a co-infection. I'm feeling a little better today, I haven't had extreme fatigue yet to the point where I need to take a nap like I have the past week. My bells palsy isn't any better yet but I think that will take a little time to heal. I'm hoping this three week dosage of doxycycline is enough since the doctors say they caught my lyme disease in the "acute" stage. Only time will tell I guess, and I really don't have the cash in hand to dish out to a LLMD so i'm relying on the doctors my insurance covers. I'm still wondering how I am going to know if my disease is gone for sure or not after this three week treatment is over though, i'm hoping they will at least do another blood test. If they do a blood test, I will ask them to check for a co-infection if possible and go from there. As of know I agree with navyguitar that it is not necessary for me to throw my families life savings into seeing a LLMD, considering that the LLMD that I talked to really sound like he was trying to make money off of others misfortune which kind of made me angry. He wanted something like $850 cash in hand for the testing only even though I show every symptom and have been tested positive for lyme disease elsewhere. The only reason I really want to see an LLMD is so he can prescribe me more antibiotics but they insist on having to throw other tests and things into the cost which tells me they are in it for the money when they should be looking at a diseased person and trying to help them with what they can afford.
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Like Jackie, ewford, and Carrie already said, you need to be tested for co-infections so proper treatment can be administered. Co-infections require different antibiotics. In many cases, one will have to take multiple antibiotics at the same time for effective treatment.
I also wanted to comment on your rash...I had a strange rash on my upper arms which my LLMD advised me is typical with the Bartonella co-infection and then she new to test me and the test was positive. This is an example of why I believe it is important to see someone who is properly educated on Lyme and other tick-borne diseases. I live in PA also and would be more than happy to share the name and phone number of the person I see with you if you send me a private e-mail.
I hope you find proper treatment soon. Best wishes to you.
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Avatar_m_tn


You sound very intelligent. Your mindset is also very rational and logical. I'm glad you caught it early. I hope you fully recover and can move forward with you life. I also noticed that Lyme doctors wanted way too much money for treatment. I thought they were trying to help people with Lyme. If that is their only intention, they should be willing to help people without a great financial gain. The prices were higher than their normal rates of other conditions which did not make sense to me. It was almost like special (expensive) pricing for Lyme patients. This was just my personal observation. Good luck to you
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Avatar_m_tn
Believe me, I would like more than anything to be tested for co-infections but the money just isn't there. My mom has multiple sclerosis and hasn't been able to work for months which has really hurt my families funds. If I could get tested - I would do it in a heartbeat no questions asked - but it's just not possible right now unless my family doctor or the emergency room can test for them so the majority of the cost is covered by insurance.
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Avatar_f_tn
That's the point exactly.  99% of all docs are already telling people they don't have Lyme or that two weeks of abx have cured them.  If that works, good, but by the time people find us here, it is because they are desperate to find out what is wrong with them and two weeks of abx didn't work.  If it's ringworm, good, that's easy to cure, and pretty much everyone agrees on that.  

You say:  "Everything I post is in concert with the vast majority of medical professionals."  Yes, we know.  That's the problem.  What you apparently don't understand or appreciate is that there is a serious fracture in the medical world about Lyme and its coinfections.  Mainstream medicine holds the views that you keep posting.  That is what the vast majority of Lyme patients hear, and it is only after they get their 2 weeks of antibiotics and do NOT get well that they come looking for us.  

You accused me of having misled the guy who ended up having ringworm.  No, what I did was say (repeatedly) in response to his (repeated) questions and posting links to photos that looked like what he says his lesions looked like was that we CANNOT diagnose him and that he has to go see a doc.  I did not tell him he had Lyme or that I thought he had Lyme.  

We are not in the business of trying to gull people.  We are here to give the other side of the split in the medical world by explaining what the split is about, what LLMDs do and how they view Lyme and coinfections, and then giving the person inquiring information on how to find an LLMD *if* they decide to follow that route.  It is not uncommon for people who post here to have been ill for many months extending into years, to have been treated for Lyme with 2 weeks of abx, and told that (in accordance with IDSA/CDC precepts) if they still have symptoms, then it's a post-infectious autoimmune reaction for which nothing can be done.  

There is, on the other hand, a substantial group of highly accredited and experienced MDs who take a contrary view, that unusual characteristics of Lyme bacteria allow Lyme to hide in the body in places (cartilage, like knees) that are hard for abx to access and in slimy shields (biofilms) that also protect the Lyme bacteria from the immune system and from antibiotics.  This knowledge has been developing for a couple of decades, but those who run the CDC and IDSA are the original 'disoverers' of Lyme back in the 1960s and 70s, and they have staked their reputations on their original views of Lyme.  These fellows do not mean harm, but they are human and have failed in the opinion of many to advance their views as evidence is found about the unique characteristics of Lyme that make it hard to diagnose and treat by the standards that work for other, more usual bacteria.

I was a shocked as anyone by this state of affairs. I have MDs in my immediate family and among my lifelong friends, and I understand the need for medicine to build on previously established knowledge.  But sometimes that previously established knowledge is found to be wrong, and it is a terrible wrench for those who have staked their reps on the early views to wake up and realize there were unknown factors that are now known.  Think about Marshall and Warren, the Aussie MDs who were in recent years awarded the Nobel prize in medicine for discovering that stomach ulcers are due to H. pylori bacteria and not to 'stress', as ulcer sufferers had been told for decades.  Think about the early 1980s when the CDC put a white-coated doc on TV to quell the rising fear of the newly discovered disease AIDS, and the doc stood in front of microphones to intone that if you were not gay or Haitian you COULD NOT get AIDS -- that was all that medicine knew at that point, because only gays and Haitians were so far showing up with AIDS, but as we all know now, AIDS is a virus and doesn't care who you are.  I watched that news conference and remember it vividly.

Time marches on; the natural world continues to change, and our interactions with the natural world change too.  Lyme is another example of that.  Standard views of Lyme are as you continue to state them:  not widespread, easy to cure with a couple weeks of abx.  Steere and Wormser, the docs who first got interested in that cluster of sick people around Lyme CT, are frozen in time and apparently lack the humility to keep up with new discoveries about Lyme and coinfections and treatments.  

I know that you are trying educate people here to what the CDC/IDSA standards are, but you are following Steere and Wormser off the short plank by not respecting Mother Nature as a tricky witch.  There are many in the world who need and expect static conditions in the universe, but that is not realistic -- the only constant is change.  That includes both bacteria and our interactions with them and also every other aspect of life in the universe.

I suspect you want to help people by explaining to them what the CDC/IDSA says, because they are the authorities and would not lead us astray.  The CDC/IDSA are made up of humans, and we are all fallible.  The wise men in 1492 told Columbus he was about to sail off the edge of the earth, because that was their understanding based on then-current evidence.  LLMDs are the Columbuses of today, sailing into unknown territory and discovering new things.

When I was first so ill with Lyme and babesiosis, I saw upwards of 20 highly credentialled and experienced MDs of many types in a city thick with high quality medical care and institutions.  I got lots of comments and guesses, but none of them worked, until I went to the dark side and saw an LLMD, after a nonLLMD university endocrinologist (out of desperation) tested me for Lyme, and the test was positive -- but the endocrinologist assured me that I could not possibly HAVE Lyme, because she had patients with Lyme, and they (she said very gently to me) are all "near death."  Well, yeah, you don't treat sick people, they can die or look like they are headed there.  

On that slim reed of hope, I found an LLMD and was diagnosed and treated.  In the intervening 4-5 years, Lyme has nearly destroyed my career and my finances and affected my family terribly, but I am now well enough to dig my way out of this crater, thanks to an LLMD who thought outside the CDC/IDSA box.

But back to you:  I perceive you as trying to tell people not to be misled by witchdoctors peddling fantasy diagnoses, but you have completely skipped over the scandal in plain sight:  mainstream medicine has failed us, through simple arrogance.

By telling people here that we are fools who have been misled, you are ignoring what is going on in the medical world.  That your tone is insulting on top of it is really unnecessary.

You are entitled to believe that Lyme is as the CDC/IDSA says, but you are not entitled to insult and denigrate the experiences of people like me and many others.  If you cannot present your view with respect toward the rest of us, then please go somewhere else and leave us be.
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Avatar_f_tn
I'm sorry to hear about your mother -- did you see Carrie235's post above about financial assistance in getting Lyme testing?  You might also explain to the doc's office your situation and see if they can guide you to help.  Best wishes to you and to your mother -- and I hate to say this, but Lyme is sometimes misdiagnosed as MS.  I think Carrie235 has been there.  You could read her posts or ask her.
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I am sorry to hear about your family's financial status. It is a tragedy that insurance companies don't pay for some of the testing and people are forced to do without proper testing and treatment due to finances.  I do know that Medicare pays for the Igenex test, which is a very reliable test, but I assume this doesn't help you right now. If something changes and you decide you want the name of the person I see, please let me know. I sincerely hope things work out for you and you get better.
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Hi Murray,

I sure do hope you get the proper testing.  You are so young and have your whole life ahead of you.  You've been very proactive in getting tested and looking up information about lyme.  Now you should be proactive and get tested properly for the co-infections.  You know you have lyme, but many people who have lyme will also have at least one co-infection which are treated differently than lyme.  It's a whole different disease from the lyme that the ticks carry, or so I understand it to be.  I had lyme and a co-infection of erlichiosis.

Anyhow, my first post to you, they ***  out the email address.  I'm going to try this again:

info (at) lymetap (dot) com

As Jackie mentioned, I thought I had MS for an entire year while being tested.  I had all the same symptoms as MS including 20 lesions on my brain.  After tons of testing though, they said that my problem is not MS and sent me on my way.  I finally got the proper testing for lyme, received a postive test, saw an LLMD, started treatment and am noticing great improvement.  I feel sometimes like I am on a roller coaster ride with my symtpoms because of "Herxing", but that is normal during recovery.

Anyhow, wouldn't it be a beautiful thing if your mother was properly tested for Lyme, discovered she had it and not MS, started treatment and got better??!!!  Just my two cents.

Take care of yourself!

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Avatar_m_tn
Once again, thanks for all the comments. However, i'm fairly confident my mother really does have MS and not lyme disease as she has the lesions on her brain and my grandmother also had MS. She has different symptoms from lyme disease for the most part, but there may be a slight chance she has lyme although I highly doubt it since I don't know whether she was tested for it or not.

Thanks for the lymetap link, but from what I read they go off of your taxes which would probably mean they would judge your wealth from last years income. Last year my family was doing well financially so they would probably deny me as my mom has only been out of work a few months. I guess anything is worth a shot though.

I've read that some of the other common co-infections can be killed off with the doxycycline also - so that's a positive. Although I know some of the co-infections like babesia take special treatment to get rid of. To be honest, i'm more worried about killing off the lyme disease first and then i'll move on to the co-infections. I'll take one step at a time, but in no way will I let my financial status dictate whether or not I get the correct treatment. If I had to, I would figure out ways to get certain medicines prescribed to me through sly tricks. I'm thinking of taking a visit to a walk in clinic that only costs about $25 and trying to convince the doctor to prescribe me medicine for my lyme disease instead of the high cost of a LLMD or trying to convince my family doctor who I know will not do so. I'm sure a walk in clinic would prescribe me at least more antibiotics if I needed them.

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Avatar_f_tn
You're very well informed --

As to treating which infection first:  Lyme is a usually a longer cure, and so everything else is treated first (like babesia).  But your doc is the one to decide.

Best wishes to you and your family -- these are difficult times indeed, and being ill on top of it just isn't fair.  Let us know how you do --  
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Avatar_m_tn
Wow, you are getting the full treatment of comments from the supporters here.  Naturally, Navy Guitar ( who I think is Gary Wormser in disguise) shows up and states that Lymes doctors charge too much and are not mainstream.  Well , I have something to say to that.  Once again, he fails to understand that Lymes doctors do not generally get paid by insurance companies if they are treating you CORRECTLY, for coinfections and the Borrelia itself.  Insuranc companies dont want to pay for long term treatments or expensive tests, so doctors who actually TREAT patients have to get paid to cover their services.  I know some regular doctors who have 10 nurses and office workers just to handle paperwork mandated by the goverment.  A proper diag requires a very long work up, 3 hours or more and tests for proper diag.  No insurance company is going to pay for that either.  it's 15 min then out the door.  

  Navyguitar does not believe in chronic illness.  He needs to visit all these other boards  like MS, Lupus, Fibro, Autoimmune, CFS, etc and see all the chronic pain sufferers that might ACTUALLY be LYME SUFFERERS with incorrect diagnosis'.  He thinks we're being duped, when in reality WE know all these others are being duped with incorrect diagnosis'.  

  Only reason Navyguitar showed up here recently is because word got around that Jackie, Carrie, REE and others here are helping others out of the woods.  Gary Wormser likes people being ignorant, he saves face that way.
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Avatar_f_tn
Ewford,  you are fab!  I had a very good and enjoyable laugh-out-loud reading your comments.

And on the serious side, your comments about testing and treatment and cost are well put.

My first LLMD appointment was an hour; every one after that was a half hour, and it was jam-packed with all the tests and talk and figuring out.  So yes, it's a steep investment, but that's the way it is.  

My LLMD had a tiny office and two helpers who also work with another doc in the suite -- no billing staff.  Keeps the costs down, but yes, it's painful compared to a $15 co pay elsewhere.  But then, the co-pay docs didn't understand Lyme.  
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Ewford is very correct...I can speak to my LLMD.  She always spends at least one hour with me and is available all hours of the day by telephone, so she more than puts in her time. Lyme and other tick-borne illnesses are very complex diseases which involve the entire body, so more time and expertise is needed. It is a steep investment, but it is well worth it.
Mifmurray - It sounds like you will do what it takes and not let your finances dictate your treatment decisions. You are so fortunate to catch your illness early and it saves a lot of time,effort, and expense if it's treatly properly in the beginning.
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Avatar_m_tn

I think you misinterpreting my responses. Please read all of my prior posts. It inflames people on this board to give medically accepted advice. It is not fair to just give people one sided biased information. You will not get unbiased information on this forum. I get attacked every time I post anything that has been documented as true by the medical world.
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I still do not know who this GW guy is you are referring to. The original poster has logical sense. He isn't going to believe your assertion that ALL diseases are caused by Lyme. I do believe that chronic illnesses exist. I just don't believe that all of them are Lyme symptoms or caused by Lyme. If LLMD's are so helpful and not in it for financial gain, why don't they help people without large cash payments? Regular MD's are willing to clinically diagnose Lyme based on the OP's symptoms, yet it takes 2 hours and $850 in cash for a LLMD to come to the same conclusion. Moreover, Lyme proponents are willing to say a person has this disease based on ANY symptom. They even make a person who has ringworms believe they should go to an LLMD.

You can't have it both ways. Everyone with any disease or any symptom is quickly made to think they have Lyme, yet it takes $850 in cash for an LLMD to diagnose it. It says a lot that an LLMD will not even help you with Lyme, unless you give him a lot of money. The one in my area has separate pricing for Lyme disease. Regular consultations are in the $100 range for all other infectious diseases. Lyme is $500 cash. He accepts insurance for all other infectious diseases, but you have to pay special cash (inflated) prices for any Lyme consultations or treatment. I thought about tricking him and scheduling an appointment not stating Lyme and having my insurance pay for a regular MD consultation. My logic told me that he would try to transition me to the Lyme pricing.
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Avatar_m_tn


Can anyone disclose how much these LLMD's have charged you for treatment? Why are their prices so much higher than insurance rates? I'm not referring to co-pays. Another thing that is disturbing is that if you are in financial hardship, they will likely show you the door. Why wouldn't they at least prescribe you 6 months of antibiotics? They want $800 plus to write a prescription. I bet there is a high correlation between wealth and the amount of treatment provided. Shouldn't the treatment be based on how sick a person is?
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Avatar_m_tn
Wow, a sentence I actually agree with "Shouldn't the treatment be based on how sick a person is?"

In my opinion whatever illness Gary Wormser has, it must have affected his skull thickness.  He can't seem to understand the cost difference.  Here's the scenario    You go to a doc complaining of being ill.  He says "Nothing can cause all these symptoms. Standard doc dosen't see rash. "You don't have Lymes.  No, Lyme isn't here in (insert name of state here) .Heres some Prozac, and Cymbalta.  Next!"

Lymes Doc. "What exactly are your symptoms? Rash? What kind? Where does it hurt? Headaches?  Stinging sensation?  Where?  doc performs visual inspection, does full workup on history.  "Ok we need to get some background and past medical history."  How do you think you contracted this?"  "Fill out this questionaire"  "Your symptoms are of some coinfections, be very specific when answering these questions"  "let's get some very specific tests done to pinpoint what we need to do"

See the difference?  OH, by the way, He can't prescribe long term ABX under current guidelines from the CDC or NIH which uses faulty data and criteria.  So he can't claim it on insurance, and yet he still needs to pay the bills and run his clinic and deal with all the HIPPA paperwork BS.  Plus he, and all doctors, have to pay skyrocketing malpractice suits from Little Jimmy's parents who gave him 5X the amount of medicine and he almost died from overdose.  So they sued the doc.  Gary, you finally getting this through?  If we can't explain this enough for you, why don't YOU call a LLMD and ask why they charge accordingly.
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Avatar_m_tn

LLMD's costs should be substantially less because they do not have to file insurance claims. All doctors would prefer to charge on a cash basis. It takes a special person to spend their life savings on a controversial disease. The fact that LLMD's have to hide from their governing boards is a tell tale sign of fraud. That is just my opinion.

By the way, I have been watching the news all day and there hasn't been a breaking news story regarding the cure for cancer. I read your other post that someone found a cure, but the government is trying to cover up the cure. They want millions of people to continue dying from this horrible disease. Is this a conspiracy theory or based on facts? Lol
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Avatar_m_tn
I went to a doc that took my insurance. He is using a protocol that uses long term low dose ABX in pulsed therapy.  He MADE me get a proper test before treating me to see what it was and if there were co-infections.  He didn't charge me 850$, but he is also using a protocol that "flies under the radar" of the insurance company.  It's the good doctors that use IV ABX that the insurance companies dont like and target.  And when I mean target, I mean complain to a medical board and have him brought up on trial because they don't wanna have to pay.  That doc cannot treat effectively under those guidelines.

As far as your statement "All diseases caused by Lyme".  I never stated that.  I said Autoimmune diseases where the symptoms are almost identical and overlap, ie MS, ALS, Lupus, Parkinsons, Hashimotos, etc.  Yes, there IS evidence that these could all be missdiagnosis and actually be Borrelia Burgdorfer or some other Borrelia.  What are YOUR sources?  Anecdotal?  The WEB?  Anthony Weiners website?

  Mine are talking to, e mails, and discussions with MAJOR researchers with more credentials than you have pubes.  
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Avatar_m_tn
yeah, why don't you read the transcript instead of the headlines.  I'm beginning to think the only research you do is whether or not sharmin is softer than stay puff.

  Antineoplastons- the same thing that antagonistic Human monoclonal antibodies do., but do by switching on several genes instead of one.   "Well bless your heart Gary..."
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Avatar_m_tn
Well besides all of the arguing (which is quite amusing I might add, lol)

I found out that you can buy doxycycline online without a prescription, which I could use a last resort of course in case I don't get better over the next three weeks and fail to find help. The price actually isn't too expensive and I would probably be able to afford it without my parents help. Not sure how legal it is, but if i'm still sick I really wont care too much i'll do whatever it takes to get better.

As for the arguing over LLMD's, I agree both ways. In a way, i'm sorry to say it because I know a lot of you a paying a lot of money for coverage but these LLMD's are using their label as a way to make a little extra cash I believe. Don't get me wrong, I would still love to see one, but the price they ask is very expensive. I don't see how a simple visit just to talk to a doctor can cost so much money. The LLMD I talked to even claimed they had some sort of "special" EKG that I know is complete and total BS because my mom is an RN and knows all about that kind of stuff. We told them I wouldn't need a EKG because i've already had 2 and both came back fine, and they said they had a "special" EKG that must be done. Some LLMD's i'm sure are in it to help the patients, but others i'm sure are in it for the money also. It's all a matter of finding the right doctor, and unfortunately the one that is close to me just isn't the right one. The cost of traveling to a good LLMD plus paying for the cost of the appointment would be just way too high, even for an family making a decent income I believe. It's all in opinion of course, and I understand you can change another man (or woman's) opinion. Overall I think the arguing over LLMD's needs to stop, and honestly I think the internet has enough information on lyme for you to educate yourself to the point where you can almost diagnose your own problems. I've read through many write ups from real MD's about lyme disease and i've learned a whole lot so far and I intend to expand my knowledge even further over the next few weeks. Sometimes you just can't rely on what your told and need to learn for yourself. I've taken that initiative and it's working for me so far, I basically knew everything the LLMD told me on the phone before they even said it. Were all humans, we all have a brain and intelligence, why not use that to educate ourselves on the matter and be able to tell the doctor exactly what we think before they say anything? It might **** them off a little bit, but hey, I'd rather be educated then have a doctor as they say "treat the disease and not the patient". That's my thinking on all of this, I know your opinions will be vastly different, but as a college student myself I enjoy receiving an education and reading to educate myself is a very satisfying feeling.
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Avatar_m_tn
I meant to say can't change another mans opinion, for what it's worth lol
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Avatar_m_tn
I understand your piont exactly. It's just the "CDC' broken treatment OR the ILADS treatment based on major clinical private studies.  Research Dr Jemsek at the Jemsek Specialty Clinic in Washington DC.  He's an ID doc that discovered the first AIDS patient in NC and has been succesfully treating them, and now, Lymes. He has seen the explosion of Lymes and Autoimmune issues and states Mycoplasma (infectious) play a large part in these chronic intracellular infections.  He has a very good website for info.  
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I agree - I am sure there are good and bad doctors in every specialty, including Lyme. As I always say, "we have to be our own advocates" and you certainly sound like your own advocate.
Also - I use to practice nursing and teach EKGs to college students and never heard of a "special EKG" either. I wonder what they meant by this and how it's special.  Very interesting!
Best wishes to you and hope you beat the Lyme.
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Avatar_m_tn
BTW, I ONLY argue with Gary Wormser here.
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Avatar_m_tn
I met a woman whos daughter at 13 had classic bullseye rash, Doc treated it with 4 weeks ABX, said she was cured.   Now shes 20, has RA, muscle aches, chronic headaches, IBS, CFS and has had a hysterectomy from benign cysts in uterus ( a common Lyme symptom).   DO NOT ACCEPT that chronic Lyme does not exist when a doc tells you that.  Any Lyme doctor will tell you that is not the case.   They see it every day.
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Avatar_m_tn
Well anyway, I'm on day 8 of my doxycycline treatment today. I've also prescribed myself to take a multi-vitamin, vitamin B-complex, vitamin D-3, and Omega 3 every day about 3 hours after I take my antibiotic. I've only been taking my doxycycline with water to ensure that maximum amount of it is absorbed into my body. I've gained a lot of energy, all my aches and pains have pretty much been eliminated. In fact yesterday was the first day I haven't had to take a nap since my treatment began. The only real symptoms I have left are neurological ones, such as my bells palsy and a little head fog once in awhile. I've read that there are no tests after clinical lyme treatment to tell whether it was successful or not. That i'm a little skeptical of, i'm going to try and convince my doctor into a least a blood test but we'll see at the end of these next two weeks.
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Avatar_f_tn
Taking a course of antibiotics against Lyme will often/sometimes (so I am told) stir the immune system to ramp up against the bacteria, so that a re-test after a course of antibiotics such as you are on may indicate higher IgG and/or IgM results, confirming a Lyme diagnosis.  Ask your doc.
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Avatar_m_tn
On day 12 of my antibiotic treatment, feeling great. Still taking vitamins every day, staying hydrated as much as possible. Still have facial paralysis, and a little brain fog, but overall I think my body is killing it off well. Virtually no fatigue anymore, can basically live my everyday life now with a couple brain farts every now and then. Keeping updated so there's info and hope for others like me.
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that's good!  keep us posted.
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Will do, first day i've been able to play my drums in 5 weeks. Feels great.
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SWEET!   hope it works out, just take more ABX to ensure the lil buggers are completely gone.  I just met another person who got 4 weeks ABX after bullseye, 1 yr later, he can't button his shirt, had to retire as a policeman as his symptoms were so bad.   He's on a medical dissability now.   4 weeks dosen't cut it and the CDC needs to know that.
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Well, doxycycline treatment is now complete as of yesterday. First day off of antibiotics, we'll see how it goes. Still seem to be getting tired more than I should, I usually start yawning and getting really tired around 8pm. Hoping that is just an effect of "post lyme" but we'll see. Before lyme I would be able to stay up for very long periods of time and hang with friends but it's tough to do that still. Also my muscles seem to be getting sore very easily which is odd, I think i've had more sore muscles this past week than i've ever had. Just from some games I used to play with friends all the time like ultimate frisbee and basketball. Hoping that my lyme is gone, but it's hard to tell. From what I read it can take months after lyme disease for your body to rebuild back to normal so on to that journey I begin. I also got winded very easily while exercising, sorta hard to breathe almost like asthma. I'm going to continue on with my everyday life and see if continue to improve or not, only thing to do now is give it time I suppose.
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Avatar_f_tn
Glad to hear you are feeling better.  If the symptoms return or if your shortness of breath does not go away, do consider going back to the doc to discuss further treatment, or find an LLMD for an evaluation.  Best wishes --
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Avatar_m_tn
if you happen to have babesia your RED blood cells are infected and you actually will have a net blood LOSS.  That is how the Canadians were diagnosing some of their soldiers w/ CFS/GWI.  They would have a low rbc count.  The Babesia has a voracious appetite for red blood cells
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If your energy remains low, you may want to seek adrenal testing.  Being seriously ill with infections may stress systems in your body and lead to insufficient levels of natural steroids that we need to feel "normal."


This is such a long and interesting thread, and I have not read all of the posts yet.  I will offer that I only sought out an LLMD after I literally exhausted all possibilities through mainstream medicine.  I also see a doctor who does not work through insurance.  However, I do not feel that the rates charged are exorbitant if one takes into consideration that my LLMD meets with me for an hour (as opposed to a short 10-15 minute insurance-approved appt, length).  I can appreciate that since LLMD's operate outside of IDSA recommendations, they also typically operate outside of insurance.  

Hope all are feeling well.
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Well it's been a few days off of doxycycline and I still have a lot of fatigue. I wake up still tired a lot, and I get really tired at points throughout the day to the point where I just want to lay down. I may possibly have a co-infection that needs dealing with, because all of my lyme symptoms are virtually gone besides fatigue. Or maybe as wonko mentioned above I may have an insufficient level of natural bodily steroids that our bodies need. I'm going to contact my doctor sooner than later if I don't see any improvements with my fatigue. I don't want to drink caffeine as i've read that it's important to let your body rest when it's tired with an infection so i've just kinda been dealing with it.  
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Well i'm still tired like all of the time. Called my doctor today and got a referral to an infectious disease doctor, maybe they could help me more. Starting to get really depressed, this disease is commanding my life now. I get so exhausted I don't even want to move, or to the point I can't even think. Only have about a month left until my next semester starts and if this doesn't get any better i'm not sure if I can go back to school. I also still have muscle twitches like crazy. I really need to get this sorted out.
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Sorry to hear you are still sick. It's possible that 21 days of doxy was not enough and/or you have some co-infections. From what I read, you should be on antibiotics until symptom free for at least one month or so.
Some infectious disease doctors are not well-versed when it comes to Lyme. A Lyme physician who is Lyme literate might be better in my opinion. www(dot)lymediseaseassociation(dot)org has a link for Lyme literate physician doctor referrals or you can try to google to find an LLMD in your area.
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I know, but LLMD's are out of the question for me unfortunately. Unless my family hits the lottery anytime soon, I probably will never have enough money to go see one. I think a infectious disease doctor will be a little more understanding then the doctors I saw previously, they may treat ME as a patient and not just follow along the lines of what 'should' be given for treatment. Anyway, if I come to a dead end I will probably end up seeing a dermatologist to get prescribed doxycycline as it was helping my acne while on it anyway. Being stuck inside all summer with all my friends out having fun and what not is giving me some serious depression unfortunately.
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OK, I hope it all works out for you. I am not sure that the amount of doxy prescribed to treat acne is the same as the amount needed for Lyme. You may want to double check that:)
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From what I read, it's the same as the doctors had me on before 100 mg's twice daily. While I was on the antibiotics I was feeling a lot better, now off of the antibiotic I seem to be getting a lot worse.
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Avatar_f_tn
I was diagnosed with about 7 weeks ago.  I too took doxycycline 100mg but for 45 days.  I am in chronic pain all the time and my doctor will only prescribe a low dose of muscle relaxers that do nothing for me!  Also I have never really had acne and now am broke out all over my chin, neck and chest and was told it is eczema because of allergies.  I too did the emg and now have the beginning stages of carpel tunnel.  My hands and feet stay numb constantly, with my right leg and arm going numb a lot and makes it hard too use.  Have also been having server migraines yay know the list goes on and on.   I live WI and still can't seem to find a doctor that specializes in this area.  Also my doctor never told me ANYTHING about lyme and I have been showing/having symptoms since June of this year.  I hope you get well and get the treatment you need, keep us posted because this stuff is driving me MAD!!
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Welcome to MedHelp --

The person who posted this original string of messages hasn't been around here for over a year, it seems, but we'd be glad to help you find your way to a doc who knows how to diagnose and treat Lyme and the other infections the same ticks often carry.

The sooner you treat, the better, because the longer the infection(s) go on, the longer it may take (and the more difficult it may be) to cure.  

Doxycycline is the standard treatment, but from my understanding (I'm not medically trained), a short course of doxy as you had often has serious limitations:  it has to be started very soon after infection, or can be ineffective; the short course you had may not be effective because of certain characteristics of the Lyme bacteria; and a work up for other infections that the same ticks carry is highly advisable, because these other infections do not respond to doxy.

I would not delay in finding a Lyme specialist for a second opinion.  You will see the term LLMD used here and elsewhere, which is patient shorthand for 'Lyme literate MD', meaning a doc who thinks more progressive thought about Lyme and treats it and the coinfections aggressively.  You seem already to know that you're still ill, so don't wait, go after it, because Lyme and its coinfections will not go away by themselves.
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I just did a google search for

             wisconsin LLMD

and got LOTS of leads.  
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Also you can send an email to

             contact [at] ILADS [dot] com

and tell them what area you live in (that is, which part of Wisconsin and near what cities) and where you can travel to easily (like Chicago or wherever).  They will send you some names of ILADS members, ILADS being the International Lyme and Associated Diseases Society, which has a huge website with a lot of Lyme-related information and is the main voluntary group for docs who think more progressive thoughts about Lyme (aka LLMDs).  They will send you back some names and you can check them out.  

NOTE:  We do NOT post doctors' names here in the website because docs who treat Lyme aggressively are often harassed by their state and local medical boards, and are threatened with not being able to practice anymore.
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Don't wait:  Lyme will not go away by itself, tho it will go through times (often seasonal) of more or less misery.  The sooner you get diagnosed and treated, the better.  Go for it!

And let us know how it goes, okay?  Best wishes --
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and PS, to post a new thread of your own, click on the orange colored button near the top of this page that says "Post a Question".

You might say something like "Seeking LLMD near Milwaukee" or wherever you can travel to.  That will get more reaction than tagging onto an old thread, which sometimes get skipped over by readers.
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Avatar_f_tn
Most LLMDs use 300-400mg a day of Doxy, so while you were on it for longer than most mainstream docs will prescribe it, your dose was too low.  At this point, your treatment could still be fairly straightforward if you've only had it six months. But you need to get to a LLMD as soon as you can if you want to get well.

I also encourage you to post a new question to start a new thread.
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