Lyme - My story thus far

[mjfmurray]

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.

[mjfmurray]

I meant to say can't change another mans opinion, for what it's worth lol

[mjfmurray]

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.

[ewford]

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..."

[ewford]

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.  

[navyguitar]

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

[ewford]

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.