I've been on Doxy for almost two weeks now, started it more or less on my own, then luckily got support from my childhood GP. I'm very confused about what's happening though...
for the last three months I've been getting lyme-symptoms about every 4 weeks I guess (tickbite 4 months ago), they persist for two weeks, slowly seep away to leave me with a couple of good days and then it hits me again: extreme pressure in head, backpain, stiff jaw and neck extreme fatigue, dizziness, big moodswings with depression, upset stomach etc.
since starting the doxy these symptoms didn't seep away again after two weeks (like I was hoping) but they persisted and became worse in the second week of Doxy. Also, I get these attacks several times a day of feeling the extreme pressure in my head, heavy weakness of my body and fatigue and... something that almost feels like an anxiety attack, my throat and chest seem to... clench? I don't know. and I very often just want to cry and die (I mean it... and I'm not a softie believe me) because the thought of that feeling persisting makes me almost lose my mind. but it doesn't happen at moments where I should feel anxiety and it doesn't precisely feel like anxiety but it feels like something I've never felt before
sigh...
I'm almost thinking that all this is just a mental illness... and I know some of the doctors I went to think that, but this all started happening at a time when I was truly happy and comfortable.
so, I don't really know what I'm asking, is this what herxing can be like? am I just crazy? will it ever get better
I will hopefully get a referral to a Lyme-specialist in Scotland at the end of the month. till then I'm pretty much on my own I guess... so any helpful words are VERY muchly appreciated
cheers
Judith
Posted by clairenotes (Member # 10392) on :
It is somewhat difficult to differentiate whether it is a lyme flare, or herx (feeling worse before better). The beginning phase of treatment is never easy. But it can/does/should get better over time.
Your symptoms sounds almost classical LD to me, both physically and emotionally. And regarding the emotions in particular, going from one extreme to another, i.e., feeling happy and comfortable to anxious with no rationale or clear cause seems indicative of an infection.
Still, I am sure a test would at least give you some peace of mind, which you could hopefully get from the LLMD in Scotland. It is good that your GP is providing you with some medication. But perhaps an adjustment needs to be made?
It might be important to read as much as possible about detoxing, which might help make things less intense.
I am very sorry you are going through this.
Best wishes,
Claire
***not medical advice, just personal opinion.
Posted by funknugget (Member # 12897) on :
Hi Judith. I'm guessing if your symptoms have changed like that since starting the doxycycline that it's probably a good indication that you are fighting an infection and having a herx reaction.
Some things you should look into - however, I am not a doctor and you should do your own research and get the advice of a health professional as well.
If you can, get a book called The Top 10 Lyme Treatments by Bryan Rosner. A lot of what I'm going to mention is from this book and is very helpful.
Over-the-counter Lithium Orotate or Lithium Aspartate - Prescription Lithium helps mental disorders by protecting the brain from toxins in the bloodstream, but is given in very high doses and different forms and can therefore cause bad side effects. These over the counter forms, although there are still some things to watch for, especially if you have kidney problems, have very few incidents of any bad side effects and can be just as powerful for any psychiatric problems like anxiety, depression, mood swings, and much more.
In my opinion, you need to get your thoughts and emotions under control before anything else.
With any supplements or therapies, you need to start very slowly, add one at a time to your regimen, and see how you react. In my opinion, lithium would be the very first thing to look into if you're having such a hard time mentally. You might also look into niacinamide or 5-htp for anxiety and depression, but do your research first.
Here are some other things which may help with other symptoms and herx reduction, which i will not go into as much detail about due to time contraint. Research thoroughly and try adding one thing at a time very slowly.
* Systemic Enzyme Therapy
* Learn about some methods of detoxing like clairenotes mentioned. A simple way to start is an epsom salt bath once in a while. There are dozens of other ways as well.
* Learn about alkalizing your body
* Do everything you can to avoid simple, processed sugar and bleached flour in any amount.
Hang in there. You're not crazy and it absolutely will get better if you take control and become determined to get better. Even if it's not lyme, you'll find the answer and I don't think for a second that you're crazy. Yes, herxing can be like that, but many things can potentially reduce herx reactions and lyme symptoms.
Oh, one last thing - you mentioned that every 4 weeks your symptoms were flaring. Lyme symptoms come and go in cycles, and it's different for everyone, but I've heard alot about people with lyme having flareups or changes in health/symptoms about every 30 days. I also know that a woman's menstrual cycle can be a time when lyme symptoms will almost definitely flareup quite a bit and every 4 weeks would be about right.
Posted by Kentucky Betty (Member # 14267) on :
When I was herxing it was more like just feeling very weak and tired. I remember telling my doctor I felt like my blood had been drained. Most of the symptoms you have sound pretty familiar as does the coming and going of it. That's one of the reasons, I think, that it takes so long sometimes to get a diagnosis. You chalk it up to working too hard, worrying too much, etc. I am concerned that you said you started doxy pretty much on your own. Has a doctor diagnosed your Lyme disease. If not, I think you should see a doctor and soon. Though those symptoms match Lyme, they're also indicative of other illnesses.
Posted by judith_svstr (Member # 14259) on :
Thank you all for your very kind and informative replies. The fact that some of you recognize my symptoms is extremely comforting.
I am very interested in the Lithium and looking into it. I think I might try and buy it soon...
The reason why I started Doxy on my own is because my doctors here in Holland refused me treatment and even testing. According to the last specialist I went to I don't have ANY matching symptoms for Lyme. I have a history of mild CVS (basically I just have less energy than other people, but I was managing GREATLY, able to work almost fulltime etc.) The specialist I went to kept saying: if I understand correctly, your CVS-symptoms just got worse and you have to take it easier :S and I keep saying 'No! I got sick 3 months ago, and I FEEL sick as a dog, not just tired!'they don't hear me... he told me to take more rest, at that moment I was mostly bedridden... I went from being a vibrant, happy positive young woman to sick, depressed and desperate... that's why I started doxy. The GP I used to have as a child was the only one who saw the difference in me, and who gave me the support to go on doxy and try and find a doc in Scotland (I'm moving there for a couple of months).
I know I have to look into detoxing, I guess I've been to exhausted to make the effort which is bad... I will though, I feel that I need it. thank you for making that clear to me.
thank you again for the kindness
Judith
Posted by judith_svstr (Member # 14259) on :
I ordered Lithium and just have to wait until I can go to a specialist...
I'm scared, very scared I will be sent away again though. Very scared of not getting help. If I tell my GP (who I have to call monday) that I've been feeling worse he might tell me to stop the doxy? And I want to do it at least for 6 weeks...
I'm sorry for putting so many questions on this board but I have no one else to ask.
Today I just have a reoccurring lump in my throat and the general tiredness, no extreme lows though, which is nice... I haven't cried today, which is kind of special :S today was alright I guess
thanks for being there
Judith
Posted by Amanda (Member # 14107) on :
I'm not a doctor, but your symptoms do seem like classic Lyme disease, especially the cylic nature of feeling horrible for a week, then better for a couple of weeks.
the fact that you are feeling worse on abx is also a classic sign of a herx reaction with Lyme.
When I started medicine, all my symptoms were much worse. Started new medicine and sure enough, feelng worse again. I started taking antidepressents because I was crying all the time.
I agree with others on this post, you need to see a LLMD as soon as you can.
By the way, when doctors tell you your sickness is "all in your head", its a sign that they are feeling incompetent, and are putting that shame on you . Its really code for, "I don't know what's wrong with you, and so I don't know how to help you, and since I am a doctor and I'm supposed to know everything, it means I am weak, or you are mental, and since I refuse to feel inferior, the problem must be you and not me."
Because the decent doctors, even when they believe its a mental problem, won't just say, "you are mental". they will talk to you about options on how to get you feeling better.
Unfortunately, we have a whole lot of trained physicians, but not enough healers.
Hang in there OK? its normal to feel horrible emotionally when you are physically sick. And by the way, maybe it isn't Lyme, but the symptoms you are having are NOT typcial for someone with emotional problems. Something is definitely wrong with your body.
Hugs - Amanda
Posted by jamescase20 (Member # 14124) on :
yeah, doctors really should admit failure sometimes...there egos are a joke.
Posted by lymebytes (Member # 11830) on :
Hi Judith, I am glad you will be seeing a Lyme doctor soon. You are not crazy, Lyme is crazy and the symptoms are enough to make one cry and want to die and I am no softy either. This disease has brought me to my knees, with every imagineable symptom. Anxiety is common w/LD, see if your GP can prescribe something that will help with it.
Being new at this, your thinking is exactly what I thought when I started treatment 19 months ago. Unfortunately, LD can take a long time to wellness. If caught right away after a bite, treatment is usually shorter.
According to ILADS former president 70% get well and it can take 1-4 years or longer. Here is their link of basic info, read both pages: http://www.ilads.org/basic.html My LLMD always says it is a "marathon not a sprint".
All you mention are signs of herxing and there is no one answer to when it will stop, we are all different. Typically, the hope is to herx for a few weeks and then feel better. But, most of us herx on and off throughout treatment (no matter how long)and our hope is eventually the good days outweigh the bad.
Typical symptoms w/LD are waxing and waning, going through good periods and then suddenly hit like it is starting over is exactly the way this works.
[ 19. January 2008, 10:01 PM: Message edited by: lymebytes ]
Posted by Al (Member # 9420) on :
" Your not crazy you have lyme disease"
These were the very first words my Dr. said to me at my first visit.
Posted by clairenotes (Member # 10392) on :
It is much more likely that this is a herx because of the doxy... but in the beginning of my treatment I experienced flares and herxes at the same time. Flares from what was not being addressed by my treatment and herxing from what was. It is also full-moon time, which is when we often see more activity.
Claire
Posted by Peacesoul (Member # 13709) on :
Judith, I have all of the same symptoms you do. When I started doxy (2 months ago), I did't and still don't feel any better, but was getting worse. Before doxy though, I was on zithro and nystatin. I find all these abx just added to my anxiety which didn't help me at all. I'm able to fight lyme when I'm less anxious.
I'm a believer that many of our symptoms are caused by stress and anxiety. When I'm less anxious, I feel much better.
I'm not saying it's not lyme, b/c I do know lyme causes many neuro symptoms, but yes, if one can learn to relax and get the anxiety in order, your symptoms would be less.
And it's very imporant to detox to lower the toxins which cause A LOT of anxiety.
Posted by judith_svstr (Member # 14259) on :
Thank you again all for the responses. the comfort I get from recognition is more than I could express with words.
thank you especially for the links on herxheimer effect, I learned a lot from those. it's good to know this... I walk on the street now exhausted and in pain but knowing where it comes from. before I heard about lyme these were the moments where I thought I was going to lose my mind, reminding myself who I would hurt if I would end it :S it's still a bad thing to go through, but knowing that I'm going through 'something' makes it bearable, it keeps me sane.
And I know anxiety will not help fight lyme. A lot of things have happened in my surroundings that have been stressful for me but feeling so sick was the biggest stress-factor. Now that I'm working on it, my stress is less I think, because I have something to move towards, a reason to hang in there so to speak.
I'm still scared I won't get any further help in Scotland.. but we'll see. in that case I might have to go overseas even further maybe? I don't know if Canada would be a good place to go, I have some friends there... but that's for later concern.
for now I'll keep on taking the Doxy and herxing like a good little girl Posted by Peacesoul (Member # 13709) on :
No, In Canada, there are only two lyme dr's in the entire country and many others do not want to recognize lyme. I'm in Montreal and my LLMD is in New York
You're best bet is to stay where you are, get as much info (research) as you can and give it to a dr who will listen to you.
There has to be some lyme literate dr's in your country. Keep reseaching.
Posted by Vermont_Lymie (Member # 9780) on :
Hi Judith,
Both lyme and other tick borne diseases can cause alot of anxiety; both from the disease itself and herx effects from treatment. What you are experiencing, I am sorry to say, may be a normal part of treatment and recovery.
People have a wide range of experiences with the disease and treatment. I NEVER had the type of anxiety that I have had for years before I was exposed to tick borne diseases. And the feeling of head pressure and tiredness.
That is why it is so important that you see a lyme literate doctor; could there be co-infections with the lyme disease?
Hang in there, this will pass! Be sure to take extra good care of yourself with good food and rest during this time period -- best to cut out all alcohol and sugar too. Hope you feel better soon.
Posted by funknugget (Member # 12897) on :
Hi Judith. I saw a couple things I wanted to respond to.
First, you said you've already ordered some Lithium. Did you look into any further on your own? As far as I know, there are very few adverse reactions, but I am not a doctor and you should at the very least do some extensive research on your own, and preferrably talk to a naturopath or some healthcare professional familiar with lithium orotate or aspartate. Lithium can cause kidney and other problems, but this is usually, if not always, with the high dose different formulation prescription lithium.
Second, with any supplement, I want to stress again to try one at a time and give it a bit and see how you react to it before adding more supplements or medications. Keep a simple journal if you can and learn to get in tune with your body and how it reacts to things.
Another good thing for anxiety is niacinamide. I have written a basic article on my website about it. The link is in my signature at the bottom of my posts. See how you react to the lithium and then you might want to look into niacinamide.
Also, I saw you wanted to try the dozy for 6 weeks. From what I understand, each antibiotic has a limited effective timeframe(usually approx. 7-45 days), but the best way to tell is probably when you stop herxing, then you need to give you body a break for a bit and then try a new antibiotic.
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