The past few days have been an absolute nightmare for me. After a really long time being undiagnosed and basically written off as crazy (I even started to wonder if I was crazy…) I was diagnosed with Lyme Disease last Wednesday. It wasn't until I went to a LLMD that I was even able to get access to a Western Blot test. I'm in Colorado so there isn't a ton of knowledge about Lyme's Disease. But basically, I've been having symptoms since I went abroad for 2 years, so I'm fairly sick right now. I'm finally back in the States and have an appointment with the Jemsek clinic in January so hopefully I'll start to feel a bit better soon.

So this is why I'm upset today and I guess I just need support: I've been seeing a doctor who has been giving me alternative care for a while, along with chelation treatments. It became evident that he was kinda a sleaze ball a few weeks ago, but there aren't many people who offer the services he does so I kind of just had to deal with it. I went in to see him the day after the LLMD told me I had Lyme but not to talk about the Lyme. I was actually going to see him because the chelation, and the way he was improperly administering it, was making me really sick. I wanted him to explain why he wasn't administering it like all the other doctors administer that kind of chelation, and that my LLMD told me to stop treatment with him if he couldn't explain why he did things differently. He told me that he was doing a new, experimental method and then just started getting incredibly angry and aggressive and said "I'm not giving you your money back so don't even try!" Which honestly, I wasn't going to try to get a refund, but I did want the remainder of my money back that I paid upfront, which really I don't think is that unreasonable!

He then went onto tell me that I didn't have Lyme and that chronic Lyme doesn't exist anyways and that he could treat me with illegal ozone therapy that ran for $10,000 to treat my "unidentified illnesses." He said that I'd need to come in multiple times a day possibly but because it's not FDA certified and hasn't been fully tested (I still can't believe this part) I would have to understand that I may have adverse reactions to the treatment for an hour or two following the infusion (from tightness in chest to seizures).

He then looked at positive Western Blot and told me that a lot of people with "serious disease" have those proteins in their body, which obviously freaked me out and still worries me even now. I tested negative for ALS in late August but now I'm worried that something has changed. I also did an MRI 8 months ago and was negative. He suggested I do a PVC test so he could "prove" to me that I "don't have any Lyme whatsoever." The test of course would be expensive. He also suggested I do a $800 panel for chemicals in my body. I couldn't deal with it- I left crying and feeling like the ALS test and MS testing was incorrect and that I really had something neurodegenerative and permanent as my symptoms are primarily neurological now that this has gone untrue.

I went to my parent's an absolute mess. I'm 22 so I go to the majority of these appointments alone, and never really thought to bring "backup" until that day. I had a chelation scheduled a few days later (today) and asked my mom to come with me because honestly I just didn't know how to handle the situation. I wasn't getting my money back and I thought maybe after I basically confronted him he may change the way he administered the chelation. The guy I like that never makes the IVs hurt came in to give me my IV and put it into a drip bag (like you're supposed to do it) which made me feel a lot more at ease.

As I was sitting there with the butterfly IV in my arm, the doctor comes into the room and asks me if I'm starting Ozone treatment today "or what." I was like, no I don't feel very comfortable and then even got angry with me (in front of my mom which shocked me). My mom was basically like, why are you trying to bully my daughter into these therapies? What is it to you? And then he dropped me as a patient. I'm not kidding. He dropped me as a patient and he said he wasn't going to offer me a referral to get another MRI or EMG anymore (which I had asked for so I could bring my latest results to the clinic with me in January, but to also get hopefully some peace of mind so I could stand a chance of enjoying the holidays) and that I could come for the remainder of my chelation but as for the rest of the treatment, this is it for me. Which I'm fine with because I've found a place in Boulder that could do it but I am just still so stunned.

Over the past few months I've seen a lot of doctors. Very few have actually helped me. Probably the only people who have genuinely helped me were my chiropractor I've known since I was a little girl, and the women who run a colonic/alternative therapy business in the tiny Colorado town I live in. The majority of the time though, I've either been completely ignored or blatantly ripped off. I don't know if this is because of my age (I'm 22) or because of the fact that I'm sick, scared and was a bit desperate in the beginning to find treatment but it has really just sucked and made me feel very depressed. I am having one of those crying days and to top it off, I have started to actually feel worse on my bad days than I did before I started treatment, which I hear is normal but isn't fun regardless.

I'm sure a lot of you have gone through a bit of this. How do you deal with people constantly telling you that you aren't sick? Have any of you been told you weren't sick despite positive Lyme tests? Have you ever had someone rip you off with treatment? How do you cope with having this much fatigue and overall weakness? Even my mind feels off. I can't think like I used to and it makes me feel stupid. How do you like take your mind off things in order to enjoy yourself?

This sickness has completely thrown my life off track. I was living in Europe, my boyfriend lives in the UK and we really do love each other, I had a little job, I was doing well in school, I loved living where I lived…

Emotionally this is probably just as hard for me as it is physically. Now I'm also worried that I don't really have Lyme because it seems every doctor I go to here either has zero understanding of it or they see it as an opportunity to make crazy profit.

After my appointment I went to my regular urgent care to see if they could schedule my MRI and EMG for me. I had my Lyme tests with me. This is an urgent care I've gone to since being home, with numerous illnesses. The doctor of the clinic even called me to say she was so sorry for my loss when I miscarried at 14 weeks earlier this summer. So it's not like this person is a random person. Well, she doesn't think I have Lyme Disease because I tested negative on the ELISA test like maybe 10 months ago. She wouldn't refer me to get my EMG or MRI for this reason, so now I get the lovely task of either waiting forever to see my neurologist to ask for another one or find another doctor. I am seeing someone Wednesday who can hopefully do it for me. Honestly, like I just want to know what's going on with my body. It is keeping me awake at night in panic. It's just been really hard lately. I feel really broken down and hopeless. I also don't exactly feel good so I don't do the same things I used to do (yoga, or even seeing my friends). If I'm not at some doctors appointment I'm either having a colonic or traveling to Wyoming in order to get a prescription for thyroid medication (oh and this doctor who was giving me chelation also can't prescribe medication in the state of Colorado anymore…). Yeah I'm just sick of all this stuff. I want my life back.

Hi Amarinmacaluso,
Welcome to our community!
First of all, I'm so sorry for all the abuse you have gone through from other uneducated doctors. We all seem to get at least a little bit of that. I don't have a regular primary care doc because if you have a diagnosis of Lyme in my area, no doctor will take you as a patient, so I know what you mean.

Did you sign a contract with the doctor that was doing the chelation therapy? If so, read through it and find out if there is anything in there that says no refunds under any circumstances. If it doesn't say no refunds under any circumstances, then I would fight this. You didn't finish treatments.

You will find that there are very, very few doctors that are properly educated on these infections - even though they think they are. We almost always know more than they do, because our lives depend on it and they don't want to get caught up in the political fight and controversy.

Your LLMD will understand. If you have already told them that you would be bringing those images, then call them back and tell them that the doctors are now all refusing to see you - they will understand. They are used to this happening to their patients.

If you haven't yet, please do take the time to read through our "New to Lyme? Start Here!" thread as it's packed full of important information, helpful links, symptom lists, detoxing suggestions (very, very important!!) and even information about probiotics that you will need.

We can help you learn a lot of the things you need to learn to heal. A lot of that information is contained in the "New to Lyme?" thread, and then you can just start reading posts and asking questions. Look for threads that are talking about some of your issues too and read what people are saying.

Remember that not all therapies posted on any forum will work for you, or will even be good for you to use, so use caution and good sense. There are no miracle cures out there for this - or none of us would be here, we'd all be healed and out living our lives. Everything is slow going and sometimes hard to get through, but you have friends here that will help you!!

Sorry Amarinmacaluso - I see in your post that you do have a LLMD.
Obviously my brain isn't functioning at a high level today.

Sounds like Dr. J. is a good Dr. for Lyme.

Well Trav - I guess if yours is operating at 75%, maybe...because sometimes it doesn't even feel like I have half a brain...lol

Awesome post, Healing!!! Something any of us can use should we find ourselves in that situation!

Well, Girlie, we may be in trouble some days then!! LOL! I'm lucky if I'm operating on 1/2 a brain today!! LOL!

I am sorry that you had to go though the ignorance, arrogance, apathy, and greeding of some doctors.
The good news is that you came to the right place. People are very knowledgable here. Go to the "new to lyme" post where you will find tones of helpful information. Hang in in there, do not get discouraged. It does get better. On the right treatment you will see a lot of progress.
Hang in there.