New to Lyme

Hi everyone!

I apologize for this lengthy post but I feel by being as detailed as possible you understand clearly the situation. I am trying to figure out what stage I am in. I never saw a tic or had a bull's eye rash.

I hope someone can explain to me a few things since I am new to lyme and surprisingly diagnosed last week.
For me everything started (I think anyway) the end of March. I was living in Los Angeles and came down what appeared to be Flu-like symptoms on March 25th. I was concerned since the following week was spring-break and was off from my usual teaching gig and signed up to work 12 hour shifts with my sister who works in the film industry. I just remember feeling really bad and I was really worried about not being able to take on this freelance gig because I really needed the money.


Anyway, my sister pushed me and I ended up doing it. During that week of running around being a PA I felt a bit better. The following weekend I was left with this horrible fatigue and I just blamed that on the heavy week. I remember vividly since it was not that long ago. On Sunday April 2, I was upbeat and happy with a get together with my siblings. That evening I was just feeling so weak, tired and feeling some pain in my kidneys (I am proned to getting kidney stones) and thought I was possibly coming down with a kidney infection. Of course I just blamed everything on the heavy week.


When I returned to my regular teaching job the following day (April 3rd) I was just exhausted. I just thought I needed a good night's rest. For the next few days I was feeling better. That Friday I was in class teaching and I started get to feel really, I mean really weak and I thought I was going to faint.. started to get strong pain in my heart and palpitations. Thank God it was my last class. I thought I was having problems with my heart. By the time I got home it subsided and I was feeling better. Anyway, these weird symptoms continued.... buzzing throughout my body....


The following week Thursday, April 14th I woke up with swollen lymph nodes and a really bad ear ache. This is what finally got me to the doctor the first time the next day. He saw no infection in my ear and decided to take a CBC and Thyroid panel. That weekend which was Easter Sunday I was feeling soooo bad I ended up in the ER. I was thinking by then that maybe I have anemia, toxins in my blood or even reverse altitude sickness since I lived the previous 6 years at high altitude.


Anyway, I had the same episode where I was in church and this horrible weakness, buzzing from my brain though-out my body. Every time these episodes happened I would sit down and get dizzy and nauseous. When the these episodes subsided I would get these really bad headaches and it felt like something was draining in my frontal lobes. In the ER, they did the same thing.... CBC, Thyroid and CT scan of my abdomen. They found kidney stones and thought it was my thyroid since all my labs were fine and I was getting these episodes.


Anyway I went back to my doctor to explain what happened and to pickup his results. He told me all the blood work came back normal. But I when I told him about my ER visit. He put me on 100mg levothyroxin and took my thyroid panel again. I took the pill once when he called me to stop taking it because my thyroid panel came back normal again. By this time I was so frustrated.


Now to end this story. I had another episode the following day with this strange draining headache and on Sunday April 23rd I woke up severely depressed, anxious and panicky. Keep in mind I had stress, a move, but I was normal and feeling okay. Now I am in this trance and I am living in hell. I stayed in LA for another month like this but couldn't handle it anymore so I quit my job and came back to NY to stay with my family. It was here that last week I went back to the doctor because I knew there is something going on in my body. I wanted to check my parathyroid, autoimmune and I was told to check for lyme.

Anyway, everything came back normal except my Lyme which was positive. I would like to know is it lyme making me mentally insane?? I was perfectly feeling normal and working hard before all this happened... Now I am always depressed, having panic attacks,extreme brain fog (not sure if that is caused from all the anxiety), cognitive impairment, tinnitus at night, insomnia, some joint pain... Sometimes I do not even feel myself and everything is unreal. My world feels completely different. There is one thing to feel sick but I never felt like this before. The other question is what stage do you think I have after reading about all my symptoms? Because if life is going to be like this then I do not know what I will do. Below are my results. What does the IGG mean? I know I need to have 5 panels out of 10 and I only have 3. Was I infected before with something else since there are 3 bands there?

Finally diagnosed 6/13/17
Western Blot
IGM
23,39 or 41 positive
IGG
18, 66 and 41 negative

All autoimmune tests came back normal including ANA profile

Thank you!

Post Edited By Moderator (Traveler) : 6/22/2017 7:49:11 AM (GMT-6)

Hi!

Thank you for your response. Keep in mind I was living normally in Colombia for 6 years prior to moving to LA. I think I got it in LA since I was not in New York for over a year. I ask you this? Is it normal to have the psychiatric side early on because I was reading that sounds more like the late stages. Also, is Lyme similar to Syphilis? The regular doctor here put me on Doxycycline and it is making me feel horribly nauseous and making my depression even more intense. In LA the doctor there put me on Prozac but it does absolutely nothing! I do have an appointment with an infectious disease doctor in 2 weeks. But in the meantime I am looking for a Lyme literate doctor.

Thank you again.

Interesting. My questions for you would be with your experience:

I know everyone is different but if I am in the acute stages will this become chronic?
Does the psychological symptoms get better over time?
Why don't ID dr's accept lyme diagnosis? I think they do accept initial diagnosis but do not believe in chronic lyme cases and have to follow compliance with ridiculous CDC protocols.

Regarding doxycycline it could be a herxheimer reaction but I never tolerated antibiotics very well and I always got really nauseous and depressed as a side effect. This is why I hate taking them and always tried to stay away.

This is one intelligent bacteria. I normally slept like a baby now I am a complete insomniac.

Thanks I will read through "New to Lyme?....Start here!"

chrisespo said...
Interesting. My questions for you would be with your experience:

I know everyone is different but if I am in the acute stages will this become chronic?
Does the psychological symptoms get better over time?
Why don't ID dr's accept lyme diagnosis? I think they do accept initial diagnosis but do not believe in chronic lyme cases and have to follow compliance with ridiculous CDC protocols.

Regarding doxycycline it could be a herxheimer reaction but I never tolerated antibiotics very well and I always got really nauseous and depressed as a side effect. This is why I hate taking them and always tried to stay away.

This is one intelligent bacteria. I normally slept like a baby now I am a complete insomniac.

Thanks I will read through "New to Lyme?....Start here!"

I don't know for sure when it's considered chronic but when the infection has disseminated (more than the just the bullseye rash and/or one or two symptoms) it will take more than a few weeks of antibiotics to irradicate it.
Unless it is caught in the first days to a few weeks - it will generally take longer to treat.
But, if your symptoms started in March...you still have a fairly recent infection. If I had 'caught' mine in the first 3 months, I wouldn't have had over 35 symptoms when I finally started treatment. I kept gaining symptoms the longer it went.

Yes, definitely - the psychiatric problems get better with treatment and time.
ID dr.'s have limitations with what they accept. Many, many people are turned away - or sent to psychiatrists ...or told they have fibromyalgia...etc. Often they are given misdiagnoses of MS, Parkinson's Disease ...or even ALS - which there is no effective treatment for.

An ID dr. will often say that a few weeks of antibiotics is all that is required - whether it's early or late lyme...they usually won't agree with long-term treatment of many months to years.
After your weeks of antibiotics, they will say you have Post Lyme Treatment Disease Syndrome (PLTDS) and you are stuck with these residual symptoms.

Regarding sleep. Welcome to the club. It's a common symptom.

I know how you feel...I used to sleep well, too. I would joke that sleeping was one of my hobbies. I was a professional napper as well.

Now ? It is better...not as good as pre-lyme but in the first year prior to treatment - my sleep was horrible...I was waking up with panic attacks...just horrible.

If you don't want to do an antibiotic approach, you can find a LLND and pursue an herbal protocol. Some people actually self-treat with herbals.

Take some time...read some threads...and then decide...

Hi Chrisespo,
Welcome to our community! I'm so glad you found us.

You have landed in a huge political fight between CDC/IDSA and ILADS (International Lyme and Associated Diseases Society) over the treatment of these infections. We are all there.

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 would not encourage you to see an ID doctor, as they will almost certainly follow CDC/IDSA guidelines.
While they are not miracle workers, the ILADS trained doctors have had the most success in treating these infections.

For information on finding a​n ILADS ​(International Lyme and Associated Diseases Society)​ trained​ Lyme Literate Medical Doctor(LLMD) in your area, 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.

​ ​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​Y​​ou 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​​

​​ ​​​​​​​​​​​​​​​​​​Y​​ou can email ​​​​the​​ ​​​​Tick-Borne Disease Alliance at​: [email protected]​
​​

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


​ ​
And www.LymeDoc.org

You will want to find an ILADS trained doctor, as ID Docs (Infectious Disease Doctors) as well as many others, 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: www.lymenet.org/BurrGuide200810.pdf

Thank you everyone!

I am just really scared because as of now I am not functioning. I can't even work. From someone who had 3 jobs working 60 hours per week with no sweat... I am a mess. With all of your experience which treatments curve the neuro-psychiatric symptoms? I will start a gluten free diet. Try telling that to my Italian family... they all think I am crazy. That is one thing I can't stand.... people think you are lazy or "it's all in your head!" I knew something was wrong and most doctors just get annoyed with you. It is surprising how the medical community shuns this disease, especially when it was first proven in 1975.

The neuro symptoms could be lyme...or bart...or both.

Treating the infections is what you need to do - whether that is antibiotics...or herbally...or both and many people add adjunct therapies....HBOT, Rife, BVT, etc.