HealingWell
Search Close Search
☰

myopathy like symptoms, no help to get.

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 2/15/2016 11:23 PM (GMT 0)
Hello there.

I am a 25 year old man from Norway, diagnosed with lyme + bart. and babesia in 2014 based on darkfield microscopy and a IgG positive western-blot test. The doctors here in Norway says that based on Norwegian guidelines, I don't have lyme disease. I got a tickbite in 2012. Got flu like symptoms and joint pain in my hands, but no rash, so didn't get any abx from my doctor. The next 12 months I felt fine except some intense joint pain in my hands when been active(cross country skiing and such things). In 2013 I got another tick bite. This time I got a rash, so the doctor gave me 2 weeks of abx. During the treatment I started to get stomach pain, headace and vision problems, but it all disappeared after a few weeks.
To make a long story short. In December 2014 all those things came back + a lot more.

I went to a llmd in Germany September 2014 and started IV treatment. After 4 weeks of IV, I went back to Norway and continued with oral abx. The last few weeks in Germany was really tough. A lot of my symptoms, which are mostly neurological, got worse, but when I came home and continued with oral abx, it wen't back to "normal". Not sure if the worsening I felt during the IV treatment was herx or just side effects.

The thing is. I've been on oral abx for 1,5 year now(had a break because of high liver values), but haven't had much improvement. I've had some periods during the last year where I have felt a little better, but my vision- and muscle symptoms haven't gotten any better. My muscle problems are the same, maybe a little worse.

I have been to 2 different neurologists and they both suspected myopathy. One EMG test was almost normal, another showed some myopathic changes. I've done 2 muscle biopsies, but they both came back fine. So the conclusion is that I don't have any kind of myopathy or any other serious muscle disease.

That doesn't help me much, because I'm not getting better, rather slowly worse. I don't have any kind of weakening in my muscle strength. The problem is rather that my muscles all over my body gets tired so fast. When walking up stairs it feels like lactic acid is building up inside my thigh, like after heavy strength training. I've been a fly fisherman for all my life, but had to give that up because of they pain and weakening I get in my hands and lower arm when casting the fly rod. I also have a lot of twitching and muscle cramps all over my body and my muscles feels kinda strange. They are all soft and if I touch my leg- or arm-muscles they feels like modeling clay. It's really strange. Also have lumps all over my body between the skin and muscles. Only a few of them hurts, the rest are just annoying.
Except these symptoms, I have all typical lyme and bartonella symptoms.

I'm making this post because I feel lost, and I don't know what to do. I'm glad I haven't been diagnosed with a serious muscle disease, but it doesn't help much if I still continue to get worse. I am seeing a psychiatrist once a week, and have done that for about 1 year, but it doesn't help me much except that I have someone to talk to. I'm not afraid and I don't have anxiety. It's more like I don't care about anything anymore and all hope about the future are far gone.
I'm not really sure what I hope for with this post, but at least it feels good to talk about my struggles.

best regards
Posted 2/16/2016 12:51 AM (GMT 0)
Hi ZizouJR - welcome to our community!

I'm sorry for all your suffering you have endured the past few years.

I am glad that you have found us here. This forum is full of helpful, knowledgeable people. We are all here to support each other. I hope we can help you.

Would you share some more information? Are you still being treated by the LLMD in Germany?
What antibiotic protocols have you been on over the 1 1/2 years?
Have you treated for co-infections - bartonella and/or babesia?

Are you doing a lot to detox your body? Multiple methods daily is needed to flush out the toxins that are created when the bacteria dies-off.

When you have a moment, it would be helpful for you to read through the "New to Lyme?..Start here!" thread at the top of the page. There is a list of detoxing ideas.
Posted 2/16/2016 4:19 PM (GMT 0)
Thank you for the reply. I will red through the "New to Lyme?..Start here!" thread.

I am still being treated by the German doctor. He is knowledgeable and have been treating patients from all over Europe for over 20 years. He has written an article about the results of his patients treatment, and the conclusion was that 95% of his patients got a lot better after treatment/got rid of all symptoms, and about 5% didn't respond much to the treatment.
He is an internist and his protocols are based a lot on burrascano's guidelines for treating of lyme + co.infections.

The medications I am using are:

Minocycline 200mg/day
Clarithromycin 1000mg/day
Bactrim(can't remember exact dosage)
Artemisia annua intense(think it is 1200mg/day)
Tinidazol(1000mg/day 10 days on 20 off)
Plaquenil (hydroxychloroquine) 300mg /day
Rifampicin(600mg/day)

I take medications morning and evening, plaquenil on evening. Rif. and minocycline on empty stomach, rest with food.
I did take malarone/malarex the first 3 months, but my liver couldn't tolerate it so I changed to Mepron and continued with that for 6 months. But Mepron is extremely expensive here in Norway and since I didn't feel any different when on it, i decided to stop and start with Buhner's babesia protocol. I have been on that for 3 months, but had a 3 weeks break because I went out of herbs, and it takes time to get it from USA.

The german doctor is only focusing on the antibiotics and that's all. So when it comes to detox and supplements the only thing I'm taking is d-vitamins because of low d-vit levels and lemon water.

I did try Byron Whites products for lyme, babesia, bart. and some other stuff for a couple of months but I didn't notice anything. Was on full dosage after only a few days, but it had no effects on me.
Posted 2/16/2016 4:39 PM (GMT 0)
Hi ZizouJRk,
Welcome to our community! I'm so glad you found us.

With the experience that I had personally, and what I've watched others go through, here is what I believe needs to happen for many of us to heal:

a)Detoxing - gene mutations, mold exposure and multiple tick-borne infections can all prevent us from detoxing well, but we must be able to get those toxins out of our bodies. I have not had any of the gene mutation testing done, although I do seem to have the same kind of issues as those that do - so I figured it was best for me to assume that I did and work to get my body to detox much better. It took a lot of diet changes as things with my body changed, I used a foot soak daily, dry skin brushing, making sure my bowels moved at least once a day (sorry if it's TMI!) pushing myself to drink at least 64 ounces of lemon water each and every day, liver/gall bladder flushes (all natural), oil pulling, taking activated charcoal and keeping the amount of stress in my life at a bare minimum. You can find some really good detoxing suggestions in the "New to Lyme?" thread that sits at the top of the forum:
https://www.healingwell.com/community/default.aspx?f=30&m=1606610

And this is another good list of possible detoxing routines: http://www.tiredoflyme.com/detox-methods.html


b)Supporting the body functions/systems. We have to have the body working at it's peak performance to heal from something as devastating as these infections. Supporting any gland, organ, body system that is struggling will allow the body to switch it's 'concentration' from just trying to function over to healing.

c) Raise the immune function. Many legitimate Lyme researchers now believe that it's the lowered immune function that determines who gets chronic Lyme and who heals right away. We already know that Lyme lowers the immune function and when a person has Bartonella and/or Babesia, the immune function is further compromised, so to heal we must raise our immune function.

d) Lastly, oddly enough, are anti-infective treatments. Many of us have experienced treatment failures​ or set backs​, so we can see that the treatments aren't the only thing we need to have - there has to be more to the equation, but anti-infective treatments are very important!! Lyme bacteria are one of the most complicated bacteria! ​Although it takes only hours or days for most bacteria to replicate, Lyme bacteria only replicates in the body every few weeks.​


I would encourage you to try a different herbal/natural protocol, because like abx protocols, every herbal/natural protocol doesn't work for every person. Sometimes a little trial and error is necessary. Since you've already started with Buhner's Babesia protocol, I would encourage you to try some of his others if you feel it is making a difference for you.
Posted 2/16/2016 5:35 PM (GMT 0)
Have you done any genetic testing like 23andme? It might be that you genetically can't detox well. That could maybe be why you are getting worse. Looks like you are taking a ton of antibiotics/herbs to hit almost everything!

Some end up having to take cholestyramine to help pull toxins out.

Do you take any B12? Again, the genetic testing would let you know what type of B12 would be best for you. Most take methylb12, Hydroxb12 or Adenob12.

Another thing to possibly explore would be heavy metal toxins. Do you have mercury fillings? It is well known that mercury can present very much like Lyme. Just a thought...
Posted 2/16/2016 5:49 PM (GMT 0)
Thanks again for reply!

I have not done genetic testing, but know people that have used 23andme, so maybe I should do that.
I don't take B12, only d-vitamins.
Also, I don't have mercury fillings.

When it comes to my diet, I have been eating healthy all my life. I love cooking and all the food I eat is made from scratch. A lot of fresh fish, white meat, vegetables and little sugar. I haven't been drinking alcohol once since I got sick. Also I try not to eat any sugar.

I do eat some pasta and brown bread, so I do get some carbohydrates.

I'm quite sure I haven't been exposed to mold, at least not that I know of.

Regarding detoxing, I should definitely get more knowledge and take it more serious.
Posted 2/16/2016 6:54 PM (GMT 0)
That is a very heavy protocol.

You're on a lot of antibiotics at one time.

Have you tried backing off on the antibiotics for a few days to see how you feel.
You could be overloaded with the toxins..as you are hitting all three "B" infections at once, and with 'heavy hitters'.
I don't think I've seen anyone on all that before.

I encourage you to ramp up your detoxing - adding in one new method every few days.
Posted 2/17/2016 5:02 PM (GMT 0)
ZizouJR,

I have a very similar experience with muscle pain as you. Throughout my treatment I have been blessed to have a lot of my symptoms improve/resolve, but the one thing that has not improved has been my muscle pain, predominantly in my legs.

As you described there is a lot of twitching, cramping, and a feeling like they fill up with lactate rather quickly. They also are always sore like I just completed a heavy workout the day before. I have been on several orals and IV meds over the past 1.5 yrs along with many natural remedies all to no avail. I did have genetic testing done which showed I had a defect in my methylation gene, but the treatments my naturopath used did nothing for me. Honestly my muscle pain was my chief complaint this past year. My fatigue was improving steadily, but the muscle pain has stayed exactly the same.

Recently I started a combo of daptomycin-ceftin-rochephin and this is the best I have felt since becoming ill. My leg soreness is almost non-existent, my leg tremors and cramping are gone, and for once I feel like I can actually exercise without worrying about a crash afterwards and/or getting more sick. As I write I am experiencing some muscle pain/soreness but I have done some form of exercise the past 4 days.

Also, I did have some relief using vasodilators which kind of reinforced a theory I had about the origin of the muscle pain. I believe the muscle pain, and quick lactate accumulation, is simply from swollen blood vessels. This is likely a consequence to the amount of inflammation that's going on in your body. As a result, your muscles are being starved of nutrients and exportation of metabolic waste, which is obviously exacerbated when you perform exercise. I was always amazed at how quickly my muscles would get definition even with minimal effort and feeling so terrible when I exercised. This also seems to support my theory as well because the muscles themselves are able to repair quickly and adequately. If I had my muscles biopsied I'm sure everything would come back normal because the muscles themselves are fine. All this to say if you truly have a bacterial infection I wouldn't expect these symptoms to resolve until the infection itself is resolved.

You mentioned that you have done fly fishing all your life. First of all let me say I'm incredibly sorry you have had to give that up and I empathize with that loss. I was an avid mountain biker and cyclist before I became ill and the grieving over the loss of those things was almost worse than any symptom I had. I'm curious to know if you feel like your arms get tired more easily than any other muscle in your body? For me, I definitely had more problems with my legs, which to me, seems to be because of how much damage I would do to the muscles with my training in the past.

I hope this info helps. It's definitely a hard road to navigate and sometimes feels like your getting nowhere, but I have a strong feeling that success favors the persistent. God willing the right treatment and doctors will come into your life and get you back on the road to recovery.
Posted 2/17/2016 5:41 PM (GMT 0)
bmoberg337, thank you for a long and informative message.
I'm "glad" to see that I'm not the only one with these kind of symptoms, and I'm glad to see that you have had some improvement!

To be honest, I feel that all my muscles gets tired,weak and painful when using them. Actually I can do some strength training with light weights without getting to much trouble, but whipping eggs with a hand whisk is almost impossible because of the muscle problems I get.
Before I got sick I was a cross country skier and had a well trained body, now I'm looking more like a 80 year old man, and my muscles doesn't feel normal at all.

My llmd wants me on IV abx, and have said from the beginning that he thought I needed it.
I will probably try doxy, rifampicin and metronidazol IV, but if that doesn't help, I will probably feel kinda lost.
Posted 2/17/2016 6:22 PM (GMT 0)
bmoberg337- were in the same boat, left over muscle Pain (and tightness for me)

ZizouJR- your muscles feel soft to the touch ? Mine get tightened up.

Legs and arms are like this. It used to be really bad after exercise, but know I recover a little better than before. Still, I dont fully recover from muscle use. They remain hard and I have to manually release them as Ive done for 5 years- trigger point, and pressure with tools for this use. I cant sretch when I'm tight, doesnt work that way.

I was also an avid XC skiier and all forms of cycling, water paddler too. Its hard to do what I want to do. For me, to live is to be active. Muscle chemisty is really limiteted info on the net- no one specializes in that field it seems. There are very few mitochonria Drs , and vein Drs dont get into this stuff.

Note: I am 14 months post ABX.
Posted 2/17/2016 6:41 PM (GMT 0)
Astroman,
It's hard to explain, but if I touch or squeeze my leg, thigh or biceps, the muscles feel soft in a strange way. If I squeeze my biceps while flexing the muscle, it is just like modelling clay(play-doh?), and it takes a while before the muscle gets it's normal shape again. Not sure if you can get anything out of this, but it's the best way I can explain it.
I did notice this already in 2014 before I really got sick. At that point I was fit and well trained, so these symptoms has nothing to do with the fact that I've been inactive for almost 2 years. I do take daily walks though.
I have yet to find a doctor that actually know what my problems are. The closest was a neurologist in Polen that said it could be lyme disease. He wanted me to do a muscle biopsy just to be sure that it's not a muscle disease. Now I've done that, but I can't get in touch with him:/
Posted 2/18/2016 8:50 AM (GMT 0)
Girlie,

My llmd wants me of all abx and on with fluconazol for a 25 days period since he suspect I have a candida infection. So will be interesting to see how I feel after that.

Later he wants me to try Daptomycin IV in combination with for example doxy. IV. I will inform him about the combination of daptomycin-ceftin-rochephin that bmoberg337 are on, just to see what his thoughts are.

I am working on adding new detox methods. Have ordered a portable IR sauna. Heard a lot of good things about them.
Posted 2/18/2016 1:53 PM (GMT 0)
You should be aware that the only reason to really go with IV abx is to avoid the digestive system. Those that really need to use IV abx are those with severely limiting digestive issues. Other wise, oral abx have the same efficacy.

Good for you for upping your detox. The more detox pathways you use each day is more toxins you can remove from your body.
Posted 2/18/2016 2:15 PM (GMT 0)
Zizou, don't know if you'll find this helpful but when I was first in treatment I complained of awful muscle weakness and fatigue and my LLMD put me on coenzymeQ10, one per day in the AM. He said the germs harm the mitochondria (or something like that, I can't remember exactly) which produce ATP (the energy chemical). Whatever it was he said, I did feel an improvement in overall energy and muscle energy when I first started taking it. Still do get the muscle weakness when I'm herxing badly but detoxing helps a lot. You are on a lot of antibiotics.
✚ New Topic ✚ Reply