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Does this sound like lyme?
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Does this sound like lyme?

I am a 20 y/o male, whose been having health problems for 3 years. I have muscle swelling (inflammation), muscle twitching, brain fog, swallowing difficulties, balance problems, and fatigue. I don't ever remember having the characteristic bullseye rash. I've been tested for everything under the sun including Lymes (Though I'm not sure how accurate the tests in Canada are). I'm really not sure what is going on, But I was hoping someone who has been through something similar can maybe help. Thanks
31 Comments Post a Comment
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Avatar_f_tn
HI,
Yes all those symptoms could be lyme or other tick borne diseases. I definitely think you should try to see a reliable lyme aware doctor to help find out if that is what you reall yhave.

Canada's health system takes a completely sceptical stance towards lyme disease - many doctors swear it only exists in the USA not in Canada! (DO the ticks carry passports and get intercepted at border controls???)

Go to this website and email them for a lost of proper lyme doctors near you:
www.ilads.org
You'll also be able to read up a lot on lyme generally on that website.
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Avatar_m_tn
Thanks for the reply and link, and your right about doctors being ignorant to lyme disease in Canada. I'll check out that site you sent and see what happens, Thank you!
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1763947_tn?1334058919
I agree with you've got to be. I never had the circular rash and those symptoms sound like Lyme and or one of its co infections. Finding an LLMD who can guide you through everything is essential. Good luck.
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Avatar_f_tn
The email at ILADS to request a referral is:

                        contact [at] ILADS [dot] org

Tell them your geographic area and/or where you can travel to.

Also, take a look at websites like CanLyme.  There may be others focussed on Canada also, I'm just not aware of them if so.

Best wishes!
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Avatar_f_tn
Up tp half of Lyme patients do not see or remember a rash, so that doesn't exclude it.  There is another nearby thread talking about IGeneX.  They are the lab of choice for doctors who know Lyme well. They report Lyme specific antibodies that are ignored by the CDC surveillance criteria, which can show an infection.
Your symptoms are consistemt with a late stage Lyme infection. Perhaps a current doc will be willing to authorize IGeneX tests while you seek out a Lyme doc.
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Avatar_f_tn
I would wait until I found a Lyme specialist to get more tests run.  If your current doc doesn't understand how IGeneX testing fits into the mix, the doc might order the wrong things, and the tests are not cheap (we're talking in the hundreds of dollars).  I wouldn't have a Chevy mechanic order parts for a Jaguar, either; I'd wait for the Jag mechanic to give a look-see and decide what to test for and from which lab.  

Then be sure you always get your own copies of ALL test results and keep them in a file at home.  You never know when they might come in handy for a future doc's review, and getting copies later from a former doc's office is a hit-and-miss thing -- you never know if you got them all.  Been there.  
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Avatar_m_tn
Just get on Doxy and see if it works. I agree antibiotics shouldnt be just taken willy nilly, but for the price of the doxy vs the tests and time they take the doxy is a far less harmfull way to go.
   If it is lyme or another tick born illness you will most likely start to feel better in 1-3 days. If no change take the doxy for ten days and stop, if you do feel better take the doxy for a full 4-6 weeks.   100mg twice a day.
   Dont screw around with this ****, it will only get worse if it is lyme.
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Avatar_f_tn
I am under the impression that there are many cases of late stage Lyme that oral doxy just will not cure.  A three year infection usually requires a more complex regimen and longer term treatment.

And Jackie's advice is excellent...to let a Lyme Literate MD order the tests you need. It can be difficult to figure out what tests to order, unless money doesn't matter.  

I did it the other way around as I was so incredibly sick, I didn't want the delay of waiting 2 weeks for an appointment, then waiting another 10 days for test results.  At that point I was going into the hospital for severe pain, and when I got out, the scary tachycardia kicked in with heart rates up to 155.  I wasn't sure I could wait a month.

At that point, I didn't care about the cost.  It wasn't trivial, though.  My full Lyme panel and full coinfection panel cost $1255.  The good news is that I got nearly $800 back from insurance because my primary doc ordered the tests.  If I had done the testing through the out of network LLMD, my insurance co. would have given me half that much. In my case, it paid off in time and money.
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Avatar_f_tn
After 3 years, it is far to late to cure this with doxy alone. You'll need a mix of several antibiotics, and only a lyme specialist is going to know what will work best for you.
Also, the majority (I believe) of us sadly also have one or more tick-borne co-infections and they will have to be treated too. The swallowing and balance problems make me think you need to be tested for bartonella, for example.

In the first 6 months of getting ill, time is of the essence. You've gone past one of the deadlines now, so I would do your research thoroughly and get a good doctor to handle things from here. Faffing about with a therapy that is not strong enough will at best only give you short-lived relief.

If you are desperate for symptoms relief meantime, I would suggest a few nutrients.

Magnesium will help with muscle twitching and possibly the swallowing thing.
Vitamin B12 (sublingual tablets) may help with balance.
Vitamins A, C and D and zinc and high dose probiotics will help you immune system in its fight.
Omega 3 oil reduces inflamamation.

If you do decide to try these, let me know and I will write out the correct therapeutic doses that my lyme doc has prescribed me (when you have lyme, taking the RDA will be nowhere near enough).
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Avatar_f_tn
I agree with other comments here that do-it-yourself doxy is not a solid gameplan.  

Doxy was the original treatment approach for Lyme, but much has been learned since then about the nature of Lyme bacteria and their peculiarities.  

Doxy also doesn't take into account the other diseases ("co-infections") that often accompany Lyme.
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Avatar_m_tn
I had lyme in my body for over a year before it manifested symptoms. I do know first hand what pain and problems it can cause. In addition to the usual symptoms I had, numbness, slurred speech, severe confusion, and more.
    That being said ,from what I have seen as a patient, there is no harm in starting a heavy routine of doxy, whereas many of the others, (roceferin) and such seem to have some far worse side affects.
   As far as cost  goes, I have no health insurance and when I went to make an appointment with a "lyme specialist" they told me the initial visit would be three to five thousand !!!
   I have been sent to the ER after having a flare up of Lyme, telling my Dr what was wrong, yet being misdiagnosed as having a pulmonary embolism. that visit cost me 8 grand !!!
    The best treatment I have found has simply been months of Doxy, it is incredibly effective . I have also coupled the Doxy with several other alternative cures.
     I think its terrible how much of the medical community denies the severity and complication of Lyme, however an equal crime is providing a patient with 100 thousand dollars of treatments that cause severe side affects !
     The Doxy may not in fact be an ultimate cure, however taking it will normally at the very least result in the person feeling much better and then they can add in whatever additional treatment they need. I do not believe it will scew the results of a spinal tap should they get to that point.
    Anyone that is experiencing Lyme sypmtoms should just get on Doxy ASAP.  As I said the important thing would be to take it long enough. The biggest reason Doxy often fails is it is commonly only prescribed for 2 weeks.
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Avatar_m_tn
Just to be sure you arent reading me wrong.
   Yes thats Three - Five thousand dollars for the initial visit and testing from a Lyme specialist.
   Yes that visit to the ER that my GP insisted upon cost me Eight Thousand Dollars !!
    Yes I know a few patients of the Lyme specialist who have had over one hundred thousand dollars of medical treatment.
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Avatar_m_tn
In the interest of full disclosure, I do still have occasional symptoms. My last Severe "attack " was Oct 2011, so less than a year.

   However with that being said, the couple other people I know first hand who have undergone the treatments, Jackie, and youvegot are reffering to also still have symptoms.

    The fact is there seems to be little proof at all that any of those treatments are at all more effective than simply Doxy.
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Avatar_f_tn
"The Doxy may not in fact be an ultimate cure, however taking it will normally at the very least result in the person feeling much better and then they can add in whatever additional treatment they need. I do not believe it will scew the results of a spinal tap should they get to that point. "

Actually, it may have helped me with spinal tap results.  My first neurological symptoms was back in 1999. Both blood serum and CSF(spinal fluid) shows nothing, not even one band back then. I wasn't mediated with anything back then. They don't know what was wrong with me-"must be weird virus"-they'd say.

These old neurological symptoms returned this past winter-same manifestations. The difference is I had white matters lesions, I was on doxycycline, and things started to show up on blood tests. Then this past April, I had spinal tap done.  Pesto, two lyme-specific bands in my spinal fluid and in blood serum.

My neurologist does not care for blood serum result, but he does about spinal fluid result.

Unfortunately, apparently I was infected for at least ten years.

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Avatar_m_tn
Interesting, and Im happy for you that they found something they can work with. It really ***** when the answers you get go no where.

   This is such a horrible organism. I almost wonder if taking the doxy made the spirochete hide, or decrease activity in one are while increasing it in another.
  

  
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Avatar_f_tn
Can you please give me the "correct therapeutic doses"?

Right now for the following, I am taking:
Magnesium-I take none, but I don't have muscles twitching. I bath in espom salt with magnesium.
Vitamin B12 100mcg, B6 100mg, with PABA 100mg
Vitamin B6-100mcg
Vitamins A-10,0000 IU including Omega 3. (I also adds olive oil to my foods)
Vitamin C-1,000mg
Vitamin D-4,000 IU with 600mg Calcium
Zinc-60mg
Co-Q10-200mg
Probiotics-I take none, every time I tried, it give me digestive trouble.
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Avatar_f_tn
A very good question. I have no idea. I heard both sides-Doxy can cause it to hide, or cause it to come out of hide.

In my case--I happened to be on Plaquneil--supposedly cyst buster, and also has been reported to change pH level in cells to make it hostile for spirochete or bacteria. Maybe that helped in my case. Who knows.

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Avatar_m_tn
As I said in an earlier post, my most recent attack was Oct 31 2011.
In addition to 6 weeks of Doxy, in late November I began IV therapy of Hydrogen peroxide.

   IV Peroxide is not widely seen as a "Lyme treatment"   However I found it a logical compliment to the notion that co-infections or Co-viruses can come along together with the lyme.

    Currently, June 2012, I am feeling better than I have in several years.

    
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Avatar_f_tn
I am horrified that a doctor said 3-5 thousand... For what?  A consultation? Or for some length of treatment?  I have heard stories of people spending up tp 6 figures for long term IV treatment, but the biggest cost is the meds, not the doctor's visits.

I think without insurance or a big savings account, doing whatever it takes to manage and suppress Lyme is the next best thing.

Lyme is an insidious and horrible infection. What the Lyme deniers are doing to us is much worse.
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Avatar_m_tn
3-5 k was only going to be the cost for the initial visit and initial blood work. No treatment.
  Even though I had already had 90% of the tests done three times in the last year, by my GP, the ER, and and infectious disease specialist, they still wanted to run them again.
   The was from Dr. C*****n in Mt Kisco, NY. a well known "lyme specialist"

   Another cost people often dont consider is the many hours of treatment. Its one thing if you are completely debillitated, but most people are still struggling to maintain some kind of life, and daily visits to a Dr office for IV drips that are only moderately successful can cause more burden.
  

   Agreed the Lyme deniers are a big problem, but from everything I have seen as a Lyme sufferer, so are many of the "Lyme Specialists".

   Basicaly as a blue collar worker with no health insurance in the US, suffering from long term Lyme, I felt F$%ked for a while. I wondered if it was going to be the end of me.
   Truth is, there were times when the pain was so bad, if I didnt have a family to live for I may have done more than just consider a dark alternative.
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Avatar_f_tn
Hi stargazer,

Here are the doses

Magnesium-I take none, but I don't have muscles twitching. I bath in espom salt with magnesium.
- Mag helpswith pain and twitching adn poor coordination and all mental problems, anything from confusion and bad memory to depression and anxiety. You start with 400mcg daily and if you feel an improvement but still have these symptoms, you can build up to 900mcg a day.
Epson salts baths are a good way to absorb mag but I don't know who you figure out what does you are on this way.... anyone else know?
BTW I dopn't take epsom salts because I have messed up sulphur metabolism (that's rare, I think it only happens to people with a lot of borrelia in the intestine and very messed up digestion)

Vitamin B12 100mcg,
I took 15,000mcg sublingual tablets, daily
It' wasn't enough to I got injections instead, 5,000mcg twice a week. That was too much!!! Which is not dangerous, but a waste of money (and hurts your bottom). If you take the tablets you shold probably get the right amount, teh very best brand is Jarrow.

B6 100mg, with PABA 100mg
That sounds fine, you don't really need super doses of B vits, but it is best to take a B complex containing all of them. Again, Jarrow B right complex is a good one.
Vitamin B6-100mcg

Vitamins A-10,0000 IU including Omega 3. (I also adds olive oil to my foods)
This is the max safe dose of vitamin A, so don't go higher than this.
Apparently olive oil doesn't have much omega 3, you get lots more from linseed oil and rapeseed oil. My doc told me to get capsules of fish oil and take the max dose on the bottle, and eat linseed oil too (but I cannot get it in Sicily, here it is olive or nothing). You need really good brands of fish oil, I use Higher Nature which I think is a good one. I also once got pure krill oil, which I think is also very good, particularly as it has a very low mercury content.

Vitamin C-1,000mg
That's the bare minimum, I take 9,000mg a day!!!
It is needed by your immune system, by your adrenal glands which make cortisol (which is our natural anti-inflammatory and also essential to give you energy and keep your thyroid gland working and to keep the levels of all your sex hormones high enough) and thirdly, needed to repair connective tissue, which is constantly being damaged by lyme spirochetes.
When we have lyme disease we need extra C for all these things.
If you want to take more, you need to buy cuffered, otherwise you will get diarrhoea, and you build up by increasing extra 1000mg every 3 days, if you get tummy upset then that is your maximum dose.

Vitamin D-4,000 IU with 600mg Calcium
My doc prescribed 2000IU daily of D
I take 1200mg daily of calcium but that is because I am allergic to dairy, I think if you do eat dairy then that dose should be fine.

Zinc-60mg
perfect

Co-Q10-200mg
I was prescribed 60mg daily, but the absorption rate of Co Q 10 is extremely variable. The brand the doc prescribed me is absorbed 3 times more efficiently than normal Q10. There are several version of Jarrow coQ10 that are also this type, you really feel the difference in energy takig them (just have the dosag it says of whatever pack you buy). I get much more benefit from taking a lower dose of good stuff than a high dose of the ordinary type.

Probiotics-I take none, every time I tried, it give me digestive trouble.
Probiotics nearly always have either lactose or fructose (also called FOS) to keep the bacteria alive. Many people with lyme have problems with these, usually fructose (I did read 40 percent of us) but I think some have problems with lactose.
Also some of us have allergies to yeast.
It is possiblte to find bacterial only probiotics with no sugar. But beter quality ones usually do have something - see what is in the ones you have taken adn if it was fructose, try lactose ones, or vice versa. If you do need ones with no sugar, you may need to look on the inernet instead of just asking at the local pharmacy. I've used ones called "Pro bio inulin free" by Kirkman, which I found very good indeed.

Hope that all helps!
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Avatar_f_tn
It sounds as if you have had awful experiences with unscrupulous doctors, I am sorry to hear about that.
Have you contacted Ilads to ask for a doctor recommendation in your area? It must be possible to find a decent doctor who doesn't charge that much? I do agree you end up paying a lot for lyme treatment, but that sounds terribly extreme.

As far as doxy goes, I have been told and also read in many places that it creates a hostile environment for borrelia, and that triggers them to form cysts and go into hiding. That means you feel better, but as soon as you stop the doxy, they all come out again and start partying!
I also read that hydrogen peroxide does the same to all spirochetes (i.e. force them to make cysts instead of dying), but that was on the internet and I don't know how reliable the source was. I was prescribed hydrogen peroxide mouthwash by my lyme doc as I had lots in my mouth giving me periodontal disease, so maybe it really does kill them.
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Avatar_m_tn
I am no longer looking for a DR to treat my Lyme disease, because I now consider it to be manageable. I do not say cured and at this point do not know it it will ever be cured . I am however feeling better about it than ever.
    For me the doxy works great, and as I say having spoken to people who have been treating Lyme for years I have less side effects than them.

    The peroxide oraly (food grade) doesnt seem to do anything, you need the IV for it to work. The thing I liked about taking peroxide, and lipoic acids was that there were no side effects .

    
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Avatar_m_tn
Ok this is my own cockeyed conclusion if you will, but its my body and I know what works for me. It seems the Lyme likes fat cells.

   Since I was initially diagnosed with Lyme I have struggled to maintain a body weight I'd like. I have carried about 25 extra pounds.
  Every time I would go on a diet, I would get about 4-5 lbs in to weight loss and BANG Id have my Lyme symptoms flare up !!
    It seemed to me that perhaps the Lyme was living or dormant in fat cells, when I would diet and start to break down fat cells I would have a reaction.  I had triggered symptoms at least ten times, and it was at the same point almost every time !

    After my last attack in Oct, and adding the Peroxide IV treatment to my Doxy regimen, I was able to loose 18 lbs without any Lyme symptoms !!! In fact I think the loss of fat cells, during doxy and HP therapy may have also been part of a good combo.

    Since that weight loss I have fluctuated quite a bit up and down, depending on how I behave, but still no trigger on the symptoms when I go down. Something has changed for the better, or at least that how it seems for now.
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Avatar_m_tn
Another good thing since you are mentioning vitamins, is actually flushing with vitamin C.
   Full cell saturation with C using buffered powder as a body flush.

   obviously to be at home because your digestive tract certainly reacts to this, but thats part of the flushing.
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Avatar_m_tn
I wonder if my guess on lyme in fat cells, is similar to the theory you describe of cysts ?
  Perhaps we are talking about the same thing, or same end result, only your description may be a bit more scientific than my lamens description.
   In any case, cysts or fat then, if you can cause the fat or cysts to break down, while simultaneously attack the organism, that might be a way to treat it.
   It is sounding like by pure accident through experiment ,that may have been what I have done.

   Hard doxy, fat loss diet, HP IV, and body flushing.
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Avatar_f_tn
Sorry to hear about your experience with a Lyme Specialist. It is disappointing that they won't look at the test results you already have.  Requiring you to buy thousands of dollars in tests as part of a consultation just doesn't seem right. No test absolutely says Lyme, so ultimately it is a clinical diagnosis.  That being said, many docs want enough evidence to back up a diagnosis if they are ever questioned about it.

If I heard what you heard from a Lyme doc, I would have moved on and found another one.  There is no licensing or board to be a member of to treat Lyme.  This kind of inconsistency is what happens when patients and doctors are forced outside "the system.". This is truly "frontier" medicine.  Buyer beware!
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Avatar_m_tn
I have e-mails ILADS looking for a refferal to an LLMD. Hopefully one exists in the Toronto Area, as I'm only 20 and done have the means to travel here there and everywhere. In the mean time I will do what some of you have suggested to hopefully ease some of the symptoms, especially the fish oil because all my muscles are an inflamed mess.

Thanks to all who replied, Hope your all well and healthy.
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Avatar_f_tn
Sorry, but I don't recall if anyone above (maybe even me) suggested taking magnesium (Mg) supplements.  I found them very helpful against muscle aches and pains.

Lyme bacteria use up Mg in their reproductive process.  Any variety ending in "-ate" is supposed to be absorbed most easily.  I take a kind that is a blend of 3 kinds:  Mg citrate, aspartate and orotate.  Mg malate is also good, I think.  

Also, taking Epsom salt baths helps, because they are just Mg, and it's absorbed through the skin.

It's not expensive stuff, and it really made a big difference for me.
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Avatar_m_tn
Hey everyone I need some advice. As I said in my post one of my symptoms was really bad muscle inflammation affecting my skeletal muscles.

Should I ask my GP to order a Muscle Biopsy to see what the cause of this inflammation is? Which in turn, May reveal what the health problem is? And can I ask my GP to do such a thing?

Thanks :)
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Avatar_f_tn
Sure, you can ask, but first I'd ask the doc (and do some research on your own) to determine whether looking at a chunk of muscle under a microscope or whatever they do with it will provide enough information for a diagnosis or if it only rules out one or two things.  
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