Lyme Disease just diagnosed after 4 years ... reaching out to anyone who understands

Infections
1

Hello,

I have been visiting my GP for 4 years with worsening symptoms.  He told me it was chronic fatigue and just referred me to clinical psychology and physiotherapy to learn how to accept it.  He prescribed me medication for all of my symptoms: propranalol for heart palpetations, codine for migraine and body aches particualrly in joints and weird nerve-like pain in my face. I was also proscribed antibiotics for constantly recurring water infections and sinusitis.  There was nothing they could suggest for the memory loss, dizziness, being off-balance, blurred vision, lack of concentration and severe cognitive dysfunction to the point of being unable to talk coherently.  

Despite knowing that i had been bitten over 100 times and being sent to hospital while abroad, then having flu-like symptoms and severe fever when i returned (this was 4 years ago), on no occasion did my GP suggest the possibility of Lyme Disease.

My condition got so bad that i gave up my career as a professional (i'm a university lecturer in Education) and, living alone after my relationship failing due to my health, i was struggling and wondering what my future held.  I wondered if there was any point living as the pain and the brain-fog was making me feel like i was insane.  I saw my friends and family cast doubting looks and they began to call me a hypochondriac.  I then began keeping things to myself and just suffering alone.

Last week i ordered private blood testing and 4 days ago i found out i was positive for Lyme Disease.   

I immediately changed my GP and booked an appointment to see my new doctor.  I was given an appointment immediately.  He was amazing, it was the first time i had seen a doctor and not felt that i was battling.  He gave me a three week dose of Doxycyclne, 100mg twice per day.  The pharmacist questioned me about the dose and i explained what it was for and she nodded.

I started the antibiotics yesterday.  I was already feeling generally poorly and sick to begin with but feel much worse on the medication.  

I feel isolated and very down, the emotional aspects of being let down and the upset of knowing this bacteria has been allowed to ruin my body for for years has taken it's toll.  The pain had already started to increase in the last month anyway and the cognitive dysfunction is also very distressing.

Being alone, i st wonder if anyone can help e by offering some words of wisdom or sharing any experiences. Many thanks in advance

I'm 34, healthy weight, eat healthy foods when i can find the energy to prepare meals, and generally fit other than the symptoms that come from this condition.

2

Hi Lucy,

Firstly, so sorry to hear what you've been through these past years and unfortunately sounds all so familiar . I was undiagnosed for 2 years and been in treatment for 11 months to date.

I would urge you to find a Lyme Specialist as what we have is very complex and requires combination therapy treatment. It is possible to get better with the right help. Assuming you're in the UK?

Sarah

3

Hi Sarah

Thanks for your reply   I had thought about getting a Lyme specialist.  I'm just so grateful and appreciative of my new GP for even 'seeming' to care, just because i've had poor care for so long now.  I'm also very grateful that i finally have a diagnosis.

Yes, i'm in the UK.  I will definitely be taking your advice if i feel i have exhausted all of the help my new GP can offer.  I must admit, i have a number of new concerns now that i have the diagnosis and one of the is linked to what you just said...basically, will the specialist i see have enough knowldge of lyme disease to provide me with the best care?  

May i ask, you say you have been in treatment for 11 months, have you got much better in that space of time? What was your recovery like in terms of the treatments and how effective they were; how long did you have antibiotics for and did they help gradually or rapidly?  I really have no idea of what to expect.

Thanks again for the reply xx Lucy

4

Hi Lucy

May I ask where you got your private bloods tested in the UK?

Also, did the blood tests also test for co-infections such as Babeisa etc?

FYI - I’m 36 male and was very healthy prior to getting a bite. 

Regards

Mark

5

Hey! I am so sorry that you are going through this, however it’s comforting to know I’m not alone in this. My life has also been put on hold, I am unable to attend college right now or go out with my friends and as a 19 year old it feels like my world is ending. So I was told that once you are on the medication it is a good sign to begin to feel worse! It’s called herxing. It’s where your body is shedding toxins. So don’t worry it means that better days are ahead for you! If the doxycycline doesn’t work look into other medications because doxycycline only works in diminishing the disease if you catch it early on, if you’ve had Lyme for awhile it can be harder to get rid of. If you are feeling alone and need someone to talk to feel free to reach out, I’m in the same boat with feeling alone and it’s always nice to talk to someone who understands what you’re going through. Keep pushing through girl, you got this. 

6

Hey, hi there

Thanks for the reply ... and sorry mine was late, i've been soooo poorly like you say since starting the doxycycline - how funny that you should say about 'herxing'.

Awww such a shame about college and not being able to meet with your friends, that's really very harsh.  I hope that you have not had this for too long and so the treatment you have will hopefully be as effective as it can possibly be.  That is, of course, provided you have already started treatment.  I want to share hope with you that we will get over this as soon as possible so then we can get on with our lives.  How i am managing to make a living, especially in my line of work (working in education with a defunct brain is hard).

You're right, it's such a lonely place to be in and others just don't understand and can't relate because they haven't had it themselves. I'm not sure where you live, but here in the UK is is like a complete rarity to have Lyme Disease ... even my GP's secretaries had no idea how to order the specific tests and where to refer...because it simply doesn't exist (which makes me feel like  don't exist), especially in my very small town where there is probably only me that travels to the extent that i do   

Yes, i'd like to offer you the same gesture, feel free to message me if you just want someone to share this horrible experience with, i know how it impact on your life and sometimes it's just nice to have someone to chat with about it

Lucy xx

7

Hello Lucy,

I am a Naturopathic Doctor in Canada that treats Lyme. It is an epidemic in North America, Europe, Asia, Britain, and probably every other part of the world.  The problem is that the health systems do not seem to want to acknowledge it so it goes largely undiagnosed and untreated.

It is generally considered that the dose of doxycycline you were given is too low to treat a Borrelia infection.  Most Lyme doctors in North America (at my last Lyme conference in Europe it seems they are doing the same) would dose 200 mg twice daily.  At this dose there is a strong possibility of adverse effects and many can't maintain this dose.  3 weeks of doxycycline is also considered to be too short a period to treat this infection, even in it's acute stage.  An acute infection (caught within the first few weeks) should be treated at least 4 weeks with doxy, and the recommendation is for 6 weeks.  A chronic infection may take months or years with this type of treatment and, as someone else mentioned, will probably not work by itself and will need combination therapy (contrary to what someone commented, doxy can be useful in chronic infection but in combination).  As someone else mentioned, it is uncommon to have a Borrelia (Lyme) infection by itself and, in time, the co-infections have to be dealt with as well.  If the infection is deeper in the body (causing neurological or heart issues) the oral antibiotics will probably not be enough to bring the infection down significantly.

Side effects from the antibiotics may be due to a Herxheimer reaction, but don't assume this.  There are many side effects from antibiotics, especially the doses needed for Lyme disease, and you should be familiar with these possible side effects and may need to discontinue the antibiotics if they become severe or are more troublesome.  Sorry I don't have more time to comment right now but I am at the end of my day and I need to go home.  Good Luck

Good luck

8

Hi Lucy,

I just read your discussion on having Chronis Lyme Disease, and being diagnosed, after 4 years of battling this horrific Disease.  Lucy, I feel you, sweetheart.  I was diagnosed, 2 years ago, as of this April.  I just realized, as of late, that I have had this disease for 30 years.  Initially, I thought I had it since 2007, because I was sick for 2 months, or so, with Flu-Like symptoms, back then.  I don't ever remember, being bit by a Tick, back then, but I suffered ever since, with sickness, through the years.  But, as I look back now, I do remember getting bit, supposedly by a spider, in the 80's, and I was very ill, and had to seek medical attention.  I went on vacation, to a highly Tick infested area, and we had camped, for 3 days, and as soon as I got back home, I was ill, and I was definitely bit by something.  I had a rash(unbelievable), there was an infection going on, swelling(unbelievable, too), flu-like symptoms, etc... I couldn't even work, I was so ill.  So when I continue to look back, after that happening, I think about some of the sicknesses and ailments, I went through, and quite a few surgeries, too, for a young person... None of it felt right.  Anyway, I feel like it happened back then, now that I really think about it, but if not, and it was 2007, I guess it really doesn't make a difference... I have chronic Lyme Disease, either way, and that is the bottom line.  Please do not feel like you are all alone, because you are not.  There are so many others out there, just looking for a connection with someone, that truly understands, just like me and you.  To be honest... I know no one else with Lyme Disease, but I know that there are plenty of people out there, that suffer everyday, like me and you.  Everyday, is truly a battle.  If you would like to respond to this message, please feel free.  I am willing to share more of my story, and my everyday life.  If not, I wish you the best, and I hope someday, you will find relief, because they found a cure!  

Best Wishes,

DNG

9

So very sorry for what you are going through. I was diagnosed after about a year and a half. My pc had the report but apparently ignored it. I was told my problem was a pinched nerve and sent to a specialist for that who sent me to a neurologist for a brain problem. The neurologist told me I had Lymes that was way over the test score. I was given doxycycline for three weeks and sent to another neurologist. I have many medical problems, some that I had before, some after Lyme. At this point it is hard to know what problem causes what symptoms. I recently had a pacemaker put in which has caused me a lot of problems. Wednesday I am having Botox injections in my esophagus for swallowing problems. Oddly

 I had spent most of my life (I am76) in the woods or my gardens with never a tick bite. Several years ago, they decided they loved me and I have had many bites. I am not being treated for Lyme, only for the many problems I have. Only my neurologist agrees that many of these problems are a result of the Lyme. All my other doctors say no. I do sincerely hope you can get all the help you need and can overcome this dreadful disease.

10

Something to consider for anyone still having symptoms after being treated for Lyme. Lyme disease can be a trigger to Biotoxin Illness. Biotoxin illness affects around 24% of the population. A brief explanation would be if you have biotoxin illness your body is not able to remove the toxins from your body like most peoples can. So they continue to circulate causing you to continuously get sick. Biotoxin illness can be triggered by mold, phisteria, and Lyme disease. It affects many systems in the body and causes many symptoms. can be difficult to find a doctor who is familiar and knows how to treat. If anyone feels they may have this and have any questions please let me know. I have just started treatment after being diagnosed. Hope this is helpful.

11

Well, I have been battling these symptoms for nearly 30 years and have not had a definite diagnosis yet. I had a large white lump with red at top and bottom nearly 30 years ago and been put off getting private blood tests by previous GP's but am going to do one soon. 4 years is nothing and I am pleased for you that you found out.

12

Hello Lucyi think you have viral infection antibiotics would not help probably. Make symptoms. Worse read about espen Barr virus eat fresh fruit &veg raw see how that works if you have a juicer juice 1bunch of celery in the morning drink it asap good luck

13

You might ask your new doctor about the option of triple antibiotic treatment versus just doxy. I've read Rifampin is one showing synergistic results when teamed up with two other antibiotics. I'd be interested in what your doctor recommends 

14

I’m 19 too and am putting college on hold till I figure out my health stuff. Haven’t been diagnosed with Lyme yet but the doc thinks I have it and I’m getting test results soon. Good luck with your health and praying you get well  soon.  

15

How do you know if Lyme is in your heart? My main symptom is rapid heart rate and palpitations but the rhythm is good. 

16

I am so sorry to hear that you are suffering with this lyme disease.  My daughter got a tick bite over a year ago.  She was very ill with flu like symptoms, headaches, missed periods, swollen and painful joints, bradycardia/slow heart rate, complete heart block. she did use the antibiotics that cleared up almost all the symptoms except for the heart problems.  I found out about using herbs.  We started on herbs about 1 month ago.  The heart rate is increasing slowly.  Praying for a recovery for you and all the lyme victims.

17

Hi there!

My name is Lucy, like you.

I read your post, and I cryed a lot.

I have Lyme and Bartonella (.

Now I am at round 3 of abx. First I was on acyclovir and valtrex wich are 2 ativirals, then Azytromicin and Tinizol, Doxy and Ciprofloxacyn, now on Tavanic ( levofloxacyn) and Rimfapicina. I feel I can't do this.

I have a lot of issues with my pulse rate and the pain around my heart and chest.

Sometimes is big like 140 sometimes low 46.

I'm so scared(.

I would want instead to deal with another symptoms but no (.

My LDD says is due to toxicity that îs în my body and the heart is fine.

How should I deal with this?

Nobody understand me and I feel like you so alone.

I hope you will read this. Maybe not.

I supposed to make you feel better but I don't know how.

I have The same life as you descrie.

I...... don't know what to say anymore (.

Please excuse me

18

My heart rate spikes too, 150-160 highs and when a doctor saw it they sent me to the hospital but they found no cause. I was told by 2 docs they think I have Lyme and got special tests done today. My heart rate doesn’t seem to go super low just normal after the beta blocker they gave me. Hope you feel better soon. God bless 

19

Hi Stephen!

I hope you will forgive me if I do grammatical mistakes. I am from Romania.

GO! Just don't give up on the test. I know there are many more than here and you will find your dissease. One of my first symptoms was the high pulse rate. I went to many places and doctors. For about 2 years I searched for an answer.

Nothing show up, just my pulse, the chronic fatigue and a heat in my body.

I was referred to a psychiatric doctor but with any help.

I discovered Lyme about 7 months ago.

So please please don't give up!

I was at the ER today because of my heart pain. Is more then I can describe in words. It is a huge pain.

Of cours I did EKG and they gave me a calmante.

There was no relief. Than I was to a cardiology doctor, done another EKG and eco.

There is nothing wrong with my heart but the pain is still here.

I wrote you all these to bo carefull with Lyme.

Thanks you very much for your time and your answer.

I wish you all the best.

God bless you.

20

Thanks for the reply. I appreciate it and just got a special Lyme and co infections test. I too have had different chest pains and many other symptoms. It seemed like after the heart rate going high became a problem it triggered other symptoms to come as well. 

Hope you get better soon.