a lyme story

I’ve been on the forum for some time and I thought I’d introduce myself and get my story here on record.

I grew up 30 miles from Lyme, CT. Was infected at 3 years old, treated with a few weeks of antibiotics. OCD onset around age 10. Chronic headaches and back/shoulder pain began age 26. Doctor told me to take alieve. Went to chiropractor who took x-rays of neck, came back normal. He continued to treat without a dx so I switched to physical therapy. Tried another 2 chiropractors and another 2 physical therapists after that. Still no dx. Tried Chinese (painful) massage, did not help much but he said I just need to relax.

Went to a DO for checkup, she suspected fibromyalgia and prescribed physical therapy. Went hiking and got bit by several ticks on the inside of my thigh/knee and removed them within 12 hours. Few weeks after that I got circle rash and fever. Another few weeks extreme weakness and crippling pain set in, I could barely function at all.

After a few days of that, I started passing out and throwing up. Went to the hospital and they said my heart rate was around 11 bpm. Taken to a cardiac icu and had a temporary pacemaker put in. My mother had in the days leading up to this mentioned lyme disease (she is a nurse and was researching my sx). I mentioned this to them and they had a lyme test done, which came back positive. This is called heart block or lyme carditis, reported to occur in 1% of lyme cases. Treated with rocephin iv and after 8 days in the unit my heart was beating on its own again.

I thought at least I finally had a dx but after the 4 week course of abx they said I was cured. I told them what about the pain? I still have it and the morphine didn’t even touch it. The ID doctor acted as if I was not making sense and ignored it. I continued tx with a doctor at MGH who decided to roll with the fibromyalgia dx. Tried a few antidepressants to no avail until one day I starting getting catatonic. It would come on like my muscles wanted to move on their own.. I felt like I could stop it if I wanted to, but if my muscles wanted to contract, maybe they would loosen up afterwards. But it hurt a lot, and it looked like a seizure. Went to the ER a few times where not much would happen. One time the doctor took one look at me from outside the room said “What is that? stop that” and walked away. After the 4th time they decided I was psychotic and sent me to a mental hospital.

I was in that place for a month. They thought maybe I had lyme in my brain making me crazy. Spinal tap was mostly normal but they put me back on iv rocephin (prescribed and monitored by my psychiatrist who had phoned some remote dr who never saw me). After that I saw another ID doctor, who said contrary to what they said I did not have lyme or any other infection. No dx. I saw a rheumatologist who wanted to put me on gabapentin but wanted me to see the psychiatrist first.

At some point I stopped talking and was taken to the ER. They decided I was psychotic again and sent me to another mental hospital for 2.5 months. Yes that is a very long time and they even tried to get me committed to a state hospital (similar to a prison). All I did was stay silent for a month. But they would get teams of 5 men to restrain me and inject me in the ass with antipsychotics. Had me in 4 point restraints. They sent me to a judge in their building who determined they could medicate me against my will. They jacked me up with antipsychotics and the gabapentin.

After I got out I was in a partial hospitalization program. The doctors now had “proof” that I had a mental problem so this is all they wanted to talk about. I was branded non-compliant for saying I had lyme or something physical. I got a horrible reaction where the pain intensified even beyond the catatonic pain or the pre-heart-failure pain. I desperately wanted to die it hurt so bad. I went to urgent care and he called the cops and an ambulence took me to the ER. They wanted to put me back in the mental hospital but by now I knew what to say.

I went to a pain clinic and they tried me on a muscle relaxer again, which did not work either. Pain clinic doctor called my mom and told her I had mental problems and could not manage my own care (by this point I was talking about moving to CA to see a doctor familiar with lyme). My primary doctor said she would help with disability paperwork (for SSDI, student loan forgiveness and private health care). But then she said I was non-compliant with treatment and that I could work also. I've been unable work for over a year at this point.

Now I am working with a new doctor who has treated my friend for lyme disease. It is out-of-pocket though and I have no income. I set up a gofundme page and raised enough to get by for now. The doctor thinks for himself and seems intelligent. Right now I have been on alinia for 1.5 months (500mg 2x/day) and doxycycline (100mg 2x/day), as well as curcurmin and omega3 for support. I’ve amassed other things for tx including samento/banderol, cilantro/chlorella, motherwort, japanese knotweed but am concerned about affecting the abx with these herbs or overloading my system. Doctor also prescribed oxytocin sublingual 25IU 4x/day for processing trauma. For pain mgmt he recommended cannabis tincture with extremely high CBD ratio 30:1.

And that’s my experience in a nutshell, so far.

I'm so sorry you have such a horrible tale to tell. (((hugs)))

The situation with Lyme and Co's is beyond pathetic.

Without a doubt, you can take those herbals at the same time you're taking abx. In fact, Japanese Knotweed will enhance the actions of your abx.

Best wishes to you moving forward! Please let us know whenever you might need some help.

Hi JSandunes!
Welcome! I'm so glad you chose to join and post in our community!!

If you haven't ​yet​, it would be helpful for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of important information, symptom lists, helpful links and pdf's, how to detox when one has these infections, information on probiotics and much more.​

All of the horror stories of those with these Lyme infections. it's just amazing and disgusting that people are treated this way. I had a 40 yr journey myself, and went through many, many things too that make me both sick and disgusted with our medical system. I'm so sorry for all that you went through.

Because of all that you went through though, I would like to be sure that you are seeing a doctor that will actually be able to help you, not put you through more *stuff* like you have already gone through!! You said that you are seeing a doctor that treated a friend. I would encourage you to find out much, much more than that! Are they ILADS trained is the biggie. If not, you are likely wasting your time with them, as they will see Lyme as IDSA (Infectious Disease Society of America) sees it, which is that it's hard to catch, easy to treat and there is no such thing as chronic Lyme - even if you are sitting in front of them with every symptom!!

Your doctor has you on too low of a dose of Doxy, so I"m glad you are adding in some herbal tinctures that will help - although I would actually encourage you to go ahead and do the full Buhner's protocol and not just parts of it.

Should you be interested, you can see my story 'in a nutshell' by following the link below, in my signature line. I do understand - this is horrible and what can happen if you trust the wrong person and make one misstep is just so wrong. I was very fortunate that I can look back and see that I narrowly missed many of those missteps!!

Hang in there!! We are here to help in whatever ways we can! But I would say that finding you an ILADS trained LLMD should be the first thing to do!! Since you've been here a bit, you likely have seen this posted many times!! LOL! But this time is just for you. I hope that it helps!

For information on finding a​n ILADS ​(International Lyme and Associated Diseases Society)​ trained​ Lyme Literate Medical Doctor(LLMD) in your area, you will need to enable your email option in your profile in order to receive any recommendations, as we don't allow doctor's names and contact info to be posted on the forum for several reasons. You can enable your email option in your profile, under 'edit profile'. Be sure to click the submit button to actually save your preference.


​You can send me an email by clicking on my screen name or the small blue envelope under my screen name. I may have contact information for some LLMD's in your area as well.​ ​Please include your state and area that you would like to find a LLMD in and I will see how close I can get to your location.​


You can start a new thread titled something like "Looking for LLMD in the (insert the nearest larger city & state) area". Members can email you about the LLMD's that they see in that area if you have your email enabled. We don't allow doctors names to be posted though.


You can email the Tick-Borne Disease Alliance at​[​​url]​[email protected]​ for LLMD referrals and you can go to ​tbdalliance.org​​ to learn more about these infections.


You can go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74​​


ILADS has their own referral system as well:ilads.org/ilads_media/physician-referral/


​ You will want to find an ILADS trained doctor, as ID Docs (Infectious Disease Doctors) believe Lyme is hard to catch and easy to treat, and don't believe in the reality of chronic Lyme. Go to the ILADS site to read the new (2014) Treatment guidelines to get you started on your healing journey:
http://www.ilads.org/lyme/treatment-guideline.php


ILADS vs IDSA:
www.clinicaladvisor.com/controversy-continues-to-fuel-the-lyme-war/article/117160/


archinte.jamanetwork.com/article.aspx?articleid=226373



www.ncbi.nlm.nih.gov/pmc/articles/PMC2901226/

I am so sorry too. You know, I think if I was there, I would have wanted to punch these people for what they put you through. It's just so hard to understand how, with all the advancements in medicine, this kind of thing can happen. Where is the compassion?

I'll echo everyone's hugs. I'm a New Englander born and bred and we don't do hugs, so you know like everyone else here I wish you didn't have to go through all this.

I second the "30 miles from Lyme". I was a high schooler though (when my symptoms started) and moved away to college before "lyme Disease" became a diagnosis. I no longer live in CT, but like many people it doesn't matter where you live it is where you got exposed. Not sure if you still live in New England, but New England is just about the worse place to get treatment (except for NY state).

Your story includes all of ours not exactly, but we all have parts of it.

I had a discussion with my veterinarian and he said "Fibromyalgia is just a big word for 'we don't know what is wrong with you'". His daughter had been diagnosed a year ago, at the age of 18, with Fibromyalgia. He suspected it was Lyme. We're in NC and it's been creeping up on us for a while. He actually follows the reports of people with Lyme because where there are people with Lyme there are dogs with ticks (and Lyme).

Our mental health professionals need to get real. I was lucky. When I reached my breaking point, I had a really good person who realized that having suicidal thoughts doesn't mean you are crazy.

My mother-in-law is schizophrenic. It took multiple involuntary admits (from which she signed herself out), $7500 in arrest warrants, two lawyers (her court appointed one we had to pay for and ours) and three years to get guardianship. One of the judges told my husband he should have quit his job and moved back to NJ to take care of her. What he really meant is, I'm tired of telling her she has to go to counseling and I don't want to see her in my court again. At the time no one told any of the family (the kids are all out of state and my fil had separated himself from her) what was happening and her brother and sisters lived in town.

My grandmother had schizophrenia but since treatment when my mother was growing up was a lobotomy she was quite so crazy. Wrong word but can't think a better one.

Now my mother-in-law is in assisted living and is get good meds mixed into her food, she is doing a lot better. She still steals the phone to call many people trying to get out. She somehow charmed two of the workers into writing letters for her to the state saying there was no reason for her to be in there. She did her own laundry, etc. My sister in law got a letter from the state telling her to control her ward.

So yeah, not a lot has changed since one flew over the cuckoo's nest, except that it seems doctors have gotten mixed up. They make bad decisions for everyone.

I've been on here a few months. It's not just great for info but also support. Believe me, I have not gone through half what you have and when I make a post complaining about the things I have no control, I get support.

i would trust the veterans and moderators on the forum more than many of the doctors I've seen.

Hope you have a better day. Keep posting even if its just to get a shoulder to lean on.
Kim

Thanks cd3764 and Traveler for the treatment advice.

Girlie: I haven't seen the movie, but the employees assume extreme things about patients and the law protects them. Enter those doors and become a second class person. That is awful that it was the psych meds that landed him there in the first place. I've had a terrible reaction to benzodiazepines as well. As Horowitz describes it in his presentation, many doctors simply "name a disease and throw a drug at it" and its even worse in psychiatry.

gkamom the fibromyalgia situation is sad. I languished for years with the physical therapy & chiropractors. There is no explanation for fibromyalgia and people don't seem to improve much. Even after everything that happened, my doctors wanted me only to go to a shrink and PT (my dx is now fibromyalgia *and* crazy). Especially with the cross-over of psych drugs being used to treat fibromyalgia, the mental thing was being pushed at all levels. They will say "no of course its not all in your head" but treat you like it is. Nobody is looking over them. Maybe thats what HIPA is really about, because I've heard more patient stories than I can count and I'm a computer scientist.

Anyway I knew by now staying there was death, and they retaliate by defaming me. I cause them no harm by leaving. They were not even serious about treating me. Like Cat53 wrote, it would seem just to punch someone for trying to kill you. Spending 15 minutes every few months with a dying patient.. no research. Really seems like 'excellence' in the medical profession is simply the closest adherence to guidelines on paper. It is not right to keep someone on a dead end treatment. It is the lyme doctors who are getting pinned for that.

On a positive note I saw a research article claiming hyberbaric oxygen treatment can reverse fibromyalgia. HBOT also works with lyme. I haven't seen much talk about it here it is worth investigating.

Just to clarify the story timeline, my current age is 30 and it was just over a year ago I had the reinfection and cardiac episode. As an update, I added on azithromycin 250mg 2x/day

Thank you all for the warm welcome

https://www.youtube.com/watch?v=6OdP8Jndnyk&t=1047 (Horowitz)

http://www.hbotnova.com/resources/lyme_disease/Fife_EffectsofHyperbaricOxygenTherapyOnLymeDisease.pdf

http://fibromyalgianewstoday.com/2015/07/17/hyperbaric-oxygen-therapy-can-reduce-pain-fibromyalgia-related-symptoms/