Sick for 2 years: is Lyme without fatigue possible?

Infections
1

Hello and thank you for taking the time to help me!

I have been fighting against the unknown for almost 2 years now. I would like to have the opinions of people who have been through Lyme and who might be able to recognize the evolution of the symptoms; although I am aware that they are different in each person.

My background:

-4 years old: got bitten by a tick but my parents saw it and brought me to the hospital. I had antibiotics treatment for 1 week (only) 

-13 years old: doctors discovered a cyst in my left breast after it exploded (quite painful!)

-14 years old: again hemorragia but from my liver that is found full of adenomas (tumors) - surgery removed the exploded adenoma (similar to cyst) or the equivalent of more than 50% of my liver

-2013 december: diagnosed with polycystic ovaries although it seems to me that it happened more or less at the same time as the Bali episode that I tell later.

Here is a summary of my "illness story" :

-August 2012: trip China for 3 weeks and last week to Indonesia, in Bali

-Bali, on the last day of the holidays I was at a birds' zoo when I started having an indescribably painful headache: everything was bothering me especially the light and the sounds. It felt as if my head was growing bigger as the pain was getting more sore. I felt literally in another world, as if the person walking was not me.

This headache lasted for 2 hours when I went back to the car, sat down and 2 seconds later I felt like a rocket from my right foot to the top of my head coming up very fast and getting all my right hand side of my body NUMB. My heart started pumping fast as well, for 1 second I couldn't speak .... ==> I had many symptoms of a stroke so we went to the hospital in Bali

-The hospital said I was fine, I must have drunk too much coffee and it has affected my brain hence the headache. We keep going our trip, arrives dinner time, at a restaurant: I could not EAT! Each bite was making me incredibly dizzy with nausea, i felt incapable of thinking straight: extreme version of "brain fog"

-I was extremely tired, could'nt feel my right hand side, including my tongue, eye, my leg I didnt know where exactly I was walking on!!!

-These symptoms continued for 1.5month! I went to the hospital back in China, did some physiotherapy as they saw on a x-ray that my neck muscles were extremely tensed and the curve was inverted, as if i had been in a car accident!! I didn't have fever, no rash or not that I can remember of. I had constant headaches and symptoms similar to a meningitis, with migraines with visual auras.

Symptoms: 

- Since then, my symptoms have been evolving. After these first 2 months, I started feeling better in terms of the fatigue and headaches. I can now say that my symptoms have been more or less the same for more than one year since the first headache/numbness epidode. 

-Yet, the symptoms are wierd since one day I am feeling good enough to live normally but the next day I am terrible in pain with muscle stiffness as if I had jut run a 10K !!

-I also always have pain in a L shape on the right side of my back neck and shoulder (similar to myofascial pain syndrome).

-Right side body numbness, which changes in intensity within the day and depending on days,

-some pain in ankles sometimes and knees,

-lots of hormonal disorders even though the blood test didnt reveal anything (can't have sex as either too dry or horrible vaginal discharge)

 feeling of constant urinary infection: burns when peeing and urine unusually  dark in the morning

-my eyes have been playing with me since the beginning of all of this: I have a speical glass on my right eye otherwise I feel very sick and dizzy, nausea.. ==> again on the right side! is it all related? (seems to me!)

-To sum up, I feel like I am 80 years old on my bad days and on my good days, I try to do as much as I can but then the illness comes back even stronger before I had time to slow down...

Doctors and "treatments":

-I have seen many different doctors, and been diagnosed with fibromyalgia, "all in your head psychosomatic" and most of the times NOTHING, they just dont know and send me home to relax and do yoga! 

-I have done the ELYSA test for Lyme and tested negative once 5 days after the Bali episode and once 1 year after, but I know the test is not reliable but what else shall I do?

-I have been following the "distressing" methods of relaxation and slow exercise but it has proven extremely difficult and soo useless towards my symptoms especially the numbness, still unexplained!

Hypotheses and questions:

-if I have Lyme, is it possible that I caught it when I was 4 years old and the treatment was not effective as I have read in many sources that the minimum treatment should be of 3-4 weeks?

-I have also read a connection between lymphatic adenomas and Lyme: has anyone heard of this as well? 

-Is it possible that my immune system fought the Lyme infection for the first 2 months but not completely which would explain why I have been feeling better from the 3rd month on? Like can it be that I have some rest of bacterias all over??

Thank you very much to anyone who could enlighten me with their experiences as I have read many testimonies but did not find any answer with regards to my LAST question especially!

Best r,

Lea

2

Hello Lea.

 Hope today was a good day for you.

I been reading about people with lyme for awhile and I been trying to fight my lyme as well, now, some of the symtoms you experienced in China and Bali are very strong and seems like they made you feel so sick so fast, the symtoms that I experienced started slowly and got worse and worse. Also depends on each person and where the infection and co-infections start to develop.

  A lot of your symtoms do match the symtoms I had and some still stubborn don't want to leave me in peace, I am on Cymbalta for 21 days to see if it helps with fibromyalgia, been taking it for 2 weeks and no changes at all for my body pain.

 Now even with months of antibiotics this infections and co-infections can survive and can make us feel even worse, so your treatment maybe helped but it wasn't long enough to get rid off infection,

  The only test you had cannot be trusted so depending of where you live other tests might be available.

  Please read information from Dr Risk, here; where I live in Calgary Alberta, Canada it might help.

  Some other clues of Lyme Disease is most people show on blood tests, that are very low in iron and vitamin D,

  I really hope you find out soon, so you can start treatment as soon as possible.

  

  Take care ,

  Victor R

3

Hi Victor,

Thanks a lot for answering wink

I forgot to say that I am French but I have been living in the UK for 4 years, I might also have been beaten here or back in France or I might not have Lyme at all... although I believe it is most likely.

I have an appointment with an infectious disease doctor in France in a month so let's see how it goes, I really cannot carry on like this, I am only 22!

I am very curious about the blood tests clues you talked about: I remember that my WHITE blood cell counts have been lower than the average since it all started while until then those had always been normal or higher. Have your doctor told you anything about white blood cells? If I am correct, this would indicate that my body is still fighting an infection?

Also, since you mention your treatment, I think I am under the same medicine for 4 months now but mine is called Laroxyl but unlike you, I have been feeling better since I am taking these drops (only 7 drops every night): I sleep better but cannot wake up in the morning... It also seems that it is putting me in a "numb" stage, peventing me from feeling sick. But like you, it doesn't help for my muscle stiffness, violent flash headaches ect...

I really like the Dr Risk website indeed, it is just so confusing how all the Lyme symptoms overlap other disease, it is indeed the "great imitator"....

I hope your treatment will help you very soon!!

Also, how did you get diagnosed may I ask? 

Thank you,

Lea

 

4

Getting officially diagnosed with Lyme in the UK is very difficult. If you have a sympathetic doctor who will listen to information then you can get a diagnosis and antibiotics from them. However, such a thing is very rare and most people end up with using private companies such or the private Lyme clinic in Winchester to get something. Good luck and I hope you get some help

5

Hi Lea,

Europe has a lot of people infected with Lyme and for what I know it also comes with some different co-infections, that might trigger some other symptoms or just make them worse.

 My son was about 16 when started to show some symptoms and he is 21 now, so I can tell you that yes you are very young and you have to be very strong and positive.

 Now hopefully the Dr. you are seeing in about a month can get things done quick and get tests done as soon as possible.

 If you think is too slow and have money to see a private clinic where they do the Lyme tests then I would do that right away, here in Calgary I blame my family doctor for the many years of getting nowhere. The private clinics work faster but also is very expenssive, What they do Lea is they draw the blood in their clinic and ship it to the labs that do the analysis.

 Now, some doctors listen to your symptoms and they know if there is a strong chance of lyme infection.

 You mentioned about white cells cpount being low, yes, I did a couple of tests and white cells count was low. You are right  the body is trying to fight infection. 

 I did get the Elisa test, and came negative, I went to the Nardella clinic here in Calgary and they send blood to the United States to have the lab work done, is a good idea to do co-infections at once to avoid more wasted time.

 I want to continue writting but must go pick son up from work,

 I hope it helps and I can even tell you many things I felt and what treatment helped, as i was feeling that I was dying.

 Talk you soon.

  Bye

  Victor R 

 

6

Hi everyone, just thought I'd bring some update here :D

Well I have been forced to go back hom, in France. After many unsuccessful, extenuating, and useless appointments with different doctors, including some in Strasbourg's hospitals where the National Centre for Borrelias reseach is, I still have not offocially been diagnosed wth Lyme. i have been extremely annoyed, pissed off and the international denial of this "rare and easy to cure" disease....

Anyways, all to say that I am currently waiting for the results of a dark field micoscopic analysis of my blood to finally show with 100% certainty that I have Lyme. This test can also show heavy metals intoxication, other co infections and acidosis! From everything I have read and learnt in this past month, I would highly recommend anyone with suspicion of Lyme to do this test FIRST. 

Another test I have done whic brought some important clues is the Borrelia PCR on my blood which came back positive. The PCR looks for the DNA of the Borrelias. Hence, it is a proof that I have been in contact with the bacteria. My Western Blot is all negative, probably because I have never taken any treatment like antibiotics so the bacterias are still well hidden? The only line which cam eup is the P41 at only 0.7. I might re-test after a few months of treatment.

Secondly, I have been lucky to find a LLMD at last and with whom I am starting a trial treatment based solely on natural antibiotics (Samento, Silver....), vitamins, minerals supplements ect...

Part of me still doubts a little of lyme only because my main debilitating symptom is this constant, permanent numbness and stiffness of my right side, including my face!  I have never read such a symptom lasting so long as mine (it's been 2 years and no improvement on that side, apart from daily variations - more or less numb and stiff, no idea why?).

Is anyone affected that way?

Best recovery to you all,

lea

7

Hello Lea,

It's been awhile and I thought things were more positive for you, I have read of some people feeling numbness and stiff is very common for people with lyme but the only thing i am not sure is if onbly to half of the body, because with lyme as we have experienced it is been all over the body, just alternating from one part of the body to another.

The good thing is that you are getting some blood results very soon and hopefully that will clarify what co-infections you are dealing with and proove too that it is lyme desease you are dealing with it.

If it is lyme and you decide to give banderol and samento a try, in their website they have packages for full treatment of lyme and the good thing is that they deliver to many countries so I am sure you can order from them and hopefully pay much less then buying it from a doctor or clinic.

I hope you get better and let us know what happens.

Good luck

Victor R

8

I know of two patients with diagnosed Lyme who received treatment and got somewhat better. Neither patient had fatigue as a symptom.  The disease presents differently in each patient, some symptoms we share, others we don't. The symptoms are wide and varying. To answer you question "can you have Lyme disease without fatigue" the answer is yes.