I am a young male.I recently graduated (in May) college with a BA in crime and justice studies with a life long goal of working in the law enforcement field.
Before then I lived a very active life often pushing my body and mind to the limit pulling all nighters in the library to get assignments done as
well as participating in college shenanigans with my friends and exercising at the gym 5 times a week. Well it seems that in the beginning of June my whole world came crashing down.
I started feeling funny after working out and wasn't recovering as well as I used to. My joints started to pop and I mean
every single one of them made cracking noises some of them painful some just annoying.
Then I got what the hospital called "anxiety or panic" attack one day sitting there doing nothing at all.
My heart started beating out of my chest I could barley breathe, my thoughts were racing and I was scared out of my mind pretty sure I was going to die.
Well that passed and the doctor said it was probably the stress from the school to home transition. So a few days went by and I went to the movies and while I was
sitting there it happened again, then a third time while golfing, then a fourth while driving home from work.
Then everyday I felt like I was having a constant battle with breathing. I could breathe but deep breathes weren't satisfying.
I went to the doctor and got a pulmonary function test done. Of course everything clear no asthma no problems.
I started getting more and more tired and freaked out about all of these random symptoms coming on so I demanded that my doctor do every blood test she can.
Sure enough I tested positive “off the charts” for lyme. She prescribed me a 4 week course of doxicycline and sent me on my way.
The first two weeks of the treatment I was feeling good no symptoms or anything then all of a sudden I was hit by a wall of symptoms.
I had huge headaches, crazy “anxiety attacks”, feeling tired all of the time and just not normal.
I went back to the doctor and told her everything and she told me to finish the antibiotics and I would be fine.
I fought through the symptoms for a while but I just couldn’t take it anymore and she told me that I needed to go to a specialist if I wanted further help.
One specialist who is great in all fields and really takes time to see you was the first one to accept me
and then I made a back up appointment with the head of the infection disease department at my local hospital but he couldn’t see me for 3 months (October).
The ID specialist who did see me right away said I might just happen to have anxiety and tried to push xanax on me and anti-inflammatory and said come back in a few weeks.
Well I didnt respond well to the xanax it made me depressed so I never took that again and after a few more weeks of being lethargic I had to quit my job and I went back to the ID.
He put me on another round of 4 weeks of doxicycline and thats when all new symptoms started to come out,
I couldn't sleep, my head was screaming, had zero energy, no appetite, dizzy etc.
I was then ordered by him to be evaluated by a neurologist and get a spinal tap. The spinal tap of course came back negative of any possible infection including lyme so the PICC line that I was begging for was taken off the table.
They told me to finish my antibiotics but then one day I was starting to have trouble seeing the ID said it was from the doxy and told me to stop taking it and then switched to Cerfuroxime 3 times a day for 10 days.
I went to the eye doctor because my vision seems to be getting worse but he said everything was fine 20/20 gave me some eye drops and sent me on my way.
It is now october and I prayed and prayed that the head of the ID department appointment would solve all of my problems.
Welp turns out he told me I was fine and that Ive had lyme for months-year before I noticed any of the symptoms. He told me that I'd be fine go get a job go back to the gym and that was that. I was devastated.
Since May the few initial symptom are lingering but now I have a whole list of scary symptoms including:
Headaches Migraines Sinus aches light headed dizzy Head pressure Eyes hurt/ feel tired/ cant see very well/ black dots Light sensitivity/ After images Ears hurt/ Ring Neck hurts Trouble Concentrating Trouble Sleeping Chest Pain/tightness Shortness of breath Shoulder/Knee Pain Muscle Aches Restless Leg Syndrome Core Shaking Extreme Fatigue Leg Weakness Weight loss Frequent urination
I am only 22 far too young for all of this to be happening to me at once. My parents think I am making it up and doctors keep telling me I am fine and referring me to psychologist.
I have seen the documentary under our skin and I am pretty much terrified at this point. Am I going to be blind? Paralyzed? Someone please help
* Sorry I tried to break up the text as best as I could to make it easy for people to read. *
.................................................
Thx for your breaking up the text - I added to that - many people here can only read a couple lines at a time - Robin (moderator)
[ 10-15-2013, 12:50 AM: Message edited by: Robin123 ]
Posted by Tbrown2 (Member # 42446) on :
Mental fog* Big one I forgot to add. I can't remember what I am doing in rooms, remember what I was going to say, hard to concentrate and hard to read. and I love to read
Posted by canadianmama (Member # 36298) on :
Sounds like you have lyme
The good news is that you are young and you haven't been sick for very long.
Go to seeking a doctor part of this forum and look for a good LLMD/LLND in your area.
ID docs are unfortunately commonly very against anything but short term lyme treatment. Sounds like you need more treatment a.s.a.p.
Don't worry too much about other peoples stories, or movies.
You can and will get better!
Try posting in the medical forum for specific info, it's the best place for health related questions.
Posted by Tbrown2 (Member # 42446) on :
Thank You guys for the help and quick response. I defiantly have lyme but they refused to give me
the PICC line because I tested negative in my spinal fluid. Is there a way to tell exactly how
long you've had it for as the guy telling me was an idiot who wouldnt stop checking his email long
enough to pay attention to me. Also I do have to find a LLMD but the closest appointment I can get
is in January and I am afraid of what my condition will be by then. And also paying for it
since most dont take insurance ontop of my 6 figure student loan bill and useless "specialist" bills. Not trying to whine but its just the truth.
Posted by Robin123 (Member # 9197) on :
The big shocker for all of us is finding out the ID docs and others are not telling us like it is. That's why we have to go to Lyme-literate doctors.
So January is the quickest? Keep looking around - you can post in Seeking, and put yourself on cancellation lists.
So we can give you lots of info here. For starters, I've heard that only 13% test positive with a spinal tap who have Lyme.
A major reason for that is the spirochetes are not in the sample! Or they could be in cyst form. So the docs are using that BS to keep you from getting treated.
So you've had symptoms since June? You don't recall any earlier? If so, you've got early disseminated Lyme and you will simply have to treat, with a good doc and us at your back!
Treatment occurs in three areas: kill/deter the organisms, detox, and fortify. We're all different in terms of how we respond to treatments.
Your doctor will also do some bloodtesting to check your blood chemistries and treat accordingly.
We can help you with each of your symptoms. For example, I went through the exact same experience as you re eye problems, including seeing an eye doctor who could find nothing wrong!
And I fixed my eye symptoms by drinking mangosteen juice everyday. It's an anti-inflammational juice that scarfs up all the free radicals created by all the inflammation. Within 24 hours, my eye symptoms were gone.
You can find the juice in healthfood stores and online. I like the mango-xan version as it's the most tart.
Remember, this worked for me. I never know how it's going to be for the next person.
You are at the start of your journey to heal, and you will get better with treatment that works for you. I suggest you read the 2008 Burrascano guidelines, at the top of Medical.
I call it going to Lyme school. By the time you see an LLMD, you can get yourself educated a little about what's going on.
I know someone who got Lymed working outside as a law enforcement officer. He is now a major Lyme educator.
Maybe one day, you too can help educate the law enforcement field about how to take protective precautions. Knowing about that is one of the great studies we need to do. It takes time to absorb this new info.
Re your family thinking you're nuts, tell them this is a real disease caused by a spiral-shaped bacterium called a spirochete. Are they willing to look up some info about an illness? I hope so!
In the meantime, you should get educated - that way, you'll be better equipped to handle comments medically.
Canadianmama suggested you can post medical questions in Medical Questions. Either you can start there with Qs, or I can move this thread there - any preference?
[ 10-15-2013, 01:30 AM: Message edited by: Robin123 ]
Posted by Tbrown2 (Member # 42446) on :
Thank You so much Robin123. It is nice to have people to talk to who understand rather than the
usual shrug off from doctors and people oblivious to whats happening to me. As for the symptoms the
little annoying once first began late may early june but the doc said the blood test said Ive had
it for a months-year before then. Not to mention the 3 weeks wasted with her insisting on not
needing a lyme test. I will try your remedy for the eye symptoms and I am slightly educated but
not much in dealing with lyme. Ever since I was diagnosed I have been glued to the computer
researching and reading about every little thing. It only took me til now when I am really
desperate to finally join one of these groups instead of just reading them. As for moving this thread that would be nice if you wouldn't mind as
I am not yet comfortable with the layout and how everything works yet. Il keep asking around for LLMD in MA or in the area but so far everyone
says all MA LLMD are terrible except for one and then quite a few recommend a woman in Rhode
Island but thats the one that isn't until January even when I asked to be on a cancellation list.
Thank You again for the acknowledgment and help.
Posted by droid1226 (Member # 34930) on :
What I would do is get my own antibiotics(orals) from an oversea pharmacy. There's a few very reputable ones like iwantmeds.com or some other ones that have been posted one here.
I use them constantly for my meds, they come quick and are way cheaper than what you'll find in the states.
If you're doing research, you'll find there are many generic protocols that any lyme dr will put you on before they even get your results back in some cases.
A standard protocol would be doxycycline with a flagyl pulse. It doesn't cover all co infections, but does cover lyme and overlaps on others as well.
You could also choose an herbal route like grapefruit seed extract. Samento/Banderol...
I would go the antibiotic route. That website has both those meds. You'll also need probiotics which you take away from antibiotics and you can get on vitacost.com for cheap. Best one is saccharomyces boulardii.
You may also want to take an anti fungal like diflucan.
I'm not a Dr...but that is what some decent LLMD's would do. It's hard to say without a Dr. seeing your test results because lyme causes so many other issues that may need addressed like adrenals, hormones, yeast, vitamin deficiency, etc..
It's something at least while you wait...You'd have to DM someone on here or me for dosages.
Posted by Tbrown2 (Member # 42446) on :
Thank you droid1226. I have heard a lot about Samento/Banderol but have shied away from the mixed reviews it gets. Other than that basically everything else you said seems like another language to me haha and as a recent college grad forced to quit his job paying for all this stuff seems like it is going to be a big problem.
Posted by droid1226 (Member # 34930) on :
It can be. That's why it should be addressed quickly. I let mine go for months at first and then for 2yrs. Simple fatigue slowly turned into bedridden with all the symptoms you listed and many more.
Serious ones like severe atrophy and nervous system, spinal problems, etc...this disease can break you. That's why it's critical you start soon.
Def not trying to scare you....I just think back to when I just had your symptoms and I wish I hadn't tried to tough it out. I'm getting better now slowly(yrs later) but it wiped me of everything physically, financially, socially, mentally...just everything.
Posted by lpkayak (Member # 5230) on :
Theres supposed to be a good llmd near boston...there are good ones in ny too
U just need an llmd to test u right-spinal taps are almost worthless...and iv is not impt unless u have a few specific problems u dont seem to have
Pm me if u dont find llmd...im close in so nh
Ps-i dont know u from philly do i
Posted by Robin123 (Member # 9197) on :
Moving to Medical per your request. Please continue to ask lots of questions!
Posted by Robin123 (Member # 9197) on :
As challenging as it is now, it's better to pay now than have to pay so much more later as the illness progresses.
You can post in Seeking and put in the heading the area/states where you're willing to go.
Posted by dbpei (Member # 33574) on :
Tbrown, I am sorry you have to go through this nightmare. I am going to PM you some information on doctors and practitioners in our area.
As others above state, you are young and you haven't had this very long. You will get better with the right treatment.
Posted by rowingmom (Member # 41213) on :
Use your time reading and informing yourself.
We are using Stephen Buhner's bartonella protocol for our daughter who has just finished 2 years of multiple oral abx for lyme/bartonella. We used Buhner's herbs throughout her treatment.
Go to his website. It is full of info on lyme and the coinfections. Order the books Healing the Mycoplasma/Bartonella coinfections, Herbal treatment of drug resistant Bacteria. He has a new book on the herbal treatment of babesia coming out next year.
These books give information on the herbs he uses, why he uses them, where to order the dried herbs or tinctures, and how to make your own if you want to. Some of this info is on his website as well.
He has an associate that you can consult for very little $$. Perhaps take this time to get going with some herbals before seeing the LLMD.
Buhner is very open to using his protocols along with abx treatment.
Best of luck, I am sorry you are suffering, but I have seen our daughter recover, you can too. You just have to find the right help.
Posted by nhlymeguy (Member # 30783) on :
Best of luck to you...I'm glad you found this site...I'm sure you'll get a good doctor recommended from someone here...
Your story is almost a mirror image of mine...I was in college when the same (pretty much exact) thing happened...
I only didn't get a "positive" lyme test at the time and went about 10 years without knowing what was wrong...talk about a living nightmare...you are early on and there is hope to beat this.
[ 10-15-2013, 04:08 PM: Message edited by: Robin123 ]
Posted by Catgirl (Member # 31149) on :
I agree with Robin, it is better to pay now. Ask your family for help (it's that important).
Lyme is so easily missed, and the idsa guidelines are antiquated, so here we all are dealing with it. The sooner you get a jump on it the better.
I also went to a top ID doc who was absolutely clueless about lyme. These people just don't know about it because the idsa guidelines are old antiquated info and flat out wrong.
Metaphorically speaking, the acceptance of lyme is similar to scientists who disagree about global warming. Some believe it's real, others do not.
There are two main schools of thought on treating lyme, and they are at opposite ends of the spectrum. One uses abx, the other is a route practiced by Dr. K.
Unfortunately, antibiotics (abx) for many of us have ruined our guts. They kill all the good bacteria in the body, and some of the lyme (just my opinion). I can no longer eat most of the food I used to because I did abx.
Yet, abx help to kill lyme. It's a catch 22, and a decision each of us at some point has had to make.
Knowing what I now know, I probably would have followed Dr. K's method first (parasite treatment). Dr. K and his practitioners start patients out on parasite treatment because Dr. K discovered that treating them first shortens the length of time on abx/meds.
I know lyme is mind blowing, and parasites on top of that can be hard to swallow. We all have them (part of nature), it's just that lyme patients seem to have more of them.
Also, there are other ways to treat. I've met people who have done ondamed (PEMF), never ruined their guts, and are quite happy with the results.
Also, some people who cannot tolerate abx do rife. I've not tried it yet, but many people like it.
And some people do Stephen Buhner's herbal protocol (book, Healing Lyme).
In the interim, I would treat for parasites if I were you. There is a great thread here called THE PARASITE WARRIORS SUPPORT THREAD. It has lots of info. You can do this yourself with herbs, salt/c protocol, etc.
You want one who is ILADS trained (International Lyme and Associated Diseases Society). They are cutting edge. You can also post here in Seeking.
I know this can all be overwhelming. The good news is at least you've accepted that you have Lyme and are willing to do something about it. Keep an open mind and hang in there, you will get better!
[ 10-24-2013, 09:47 PM: Message edited by: Catgirl ]
Posted by GretaM (Member # 40917) on :
Keep on Truckin'
One of the most annoying part of these infections, that as a patient, you have to educate and advocate for yourself constantly. It isn't like other diseases where someone will do it for you. It is an uphill climb all the way until you find an LLMD.
It seems ID docs are super interested in HIV therapy and treatment, and that is where most of the funding is going. At least in BC. The ID have been taught the simple solution was found in the 90's for lyme, so lyme is boring and the patients are nuts. (paraphrasing here, but it's true).
Now is the time to prepare yourself to beg and borrow. Lyme is a very expensive disease to have.
Don't be too proud to ask your family and friends for help. Also there are some financial links at the top of this forum.
I spend $120 a month on just probiotics.
So far my meds have been covered by extended health, but the orals were about $660 a month at the highest. And the IV is $990 a month.
Droid has been creative in finding ways to save money with meds. So heed his advice on ways to save some dough.
And maybe start talking to the people who love you and let them know that you may need their emotional and financial support.
I'm not trying to scare you, just trying to give you an idea of what things may cost, and to let you know you're on the right path.
An LLND may be a good option in your area as well.
Bottom line is see a lyme literate doc as soon as you can.
And hang in there-you're young, you'll bounce back quick Posted by ookearaoo12 (Member # 41442) on :
You sound a lot like me. I was a healthy 26 year old. In May my health steadily declined day by day.
I went to doctor after doctor. Test after test. Was told it was in my head.
I did my own research and found this website that helped me find my LLNP. I FINALLY got diagnosed with Lyme last week!
Find a Lyme Literate doctor ASAP. And use this forum for any questions. The GREAT people on here help A LOT!
Posted by ookearaoo12 (Member # 41442) on :
Also I just realized it looks like you live pretty close to me. Feel free to private message me for my Lyme Literate Doctors name!
Posted by Tbrown2 (Member # 42446) on :
Thank you everyone for your support and suggestions. This is a lot for me to take in at the moment and I am starting to feel overwhelmed with all the new facts and good/bad news coming at me from all over the
country. I have read every single response and I am very thankful for everyones contributions. Please don't be offended If I don't respond directly to some people as there is just so much I have to say and read as
well as sometimes I don't know what to say. I just want you all to know that your post are defiantly being acknowledged and highly appreciated.
Thanks Again
Posted by Robin123 (Member # 9197) on :
Don't worry over it - it took me a while also for this info to sink in - it's like a new world we have to learn about, so feel free to handle it at your own pace - Posted by lyme in Putnam (Member # 11561) on :
It sounds like you got it in the beginning. It's good u had a positive test. Find an llmd and start treatment and test for co- infections. You'll be ok. My spinal was negative , have 12 brain lesions. Nothing makes sense out of this. It's a disgrace this goes on. Feel good , God bless.
Posted by nefferdun (Member # 20157) on :
I am sorry for what you have gone through but thank goodness you found this forum where you will get the life saving support and help you need to get into remission.
I would gather your family together to watch Under Our Skin and try to get them to read Cure Unknown by Pam Weintraub. Hopefully that will open their eyes.
There are many infections you get from one tick bite. You have symptoms of borellia as well as bartonella and babesia. Doxycycline is effective against borellia and ehrlichia and helps somewhat with bart and babesia but you will probably have to treat those infections with other drugs.
You might even have other infections like protomyxzoa rheumatic, my last malady. This is a marathon but you can get back to feeling pretty functional while you are treating. There will be ups and downs.
I agree with the online pharmacy route if you don't have the money for an LLMD. The herbs aren't strong enough unless you have already gotten your load down with abx. Taking breaks from abx as needed and filling in with herbs is sometimes needed but I don't know of anyone that has gotten into remission using nothing but natural cures.
I wouldn't worry about destroying your gut if you are mindful of keeping candida under control. When you feel you need to back off, back off. I was treating five years and I took several long breaks when the abx side effects got to be too much. I used massive amounts of herbs during that time trying to hold my ground.
Shortly after you begin treatment, you should experience a herx, which is a worsening of symptoms. That indicates the drug is working; die off. Even LLMD's can get confused as to what is a herx, what is a drug side effect and what is a new infection emerging. That is the what makes treatment so difficult.
It took me a year to treat each infection. When I look back at it, I believe it actually only took about 6-8 months to get each infections dormant but I didn't recognize it because I couldn't distinguish one infection from another so I kept treating the same thing.
Posted by Judie (Member # 38323) on :
The CDC guidelines are archaic and wrong. I'm so sorry you are a victim of the system.
It might be before your time, but he treats the singer Daryl Hall of Hall & Oates. Daryl Hall has chronic Lyme and you can watch interviews of him talking about Lyme if you do a google search.
Daryl did a spot with Howard Stern awhile back.
Here's a SHORT video to show your family.
It's a news segment on CBS and it's only 5 minutes.
(I couldn't get my family to sit through Under Our Skin, this might be easier for them to swallow).
Not only do you have lyme (you said your lyme test was off the charts, and you have named so, so many lyme symptoms), but you also have babesiosis.
Read about babesiosis in the Burrascano Guidelines. What you have been experiencing with your breathing issues is what Burrascano calls "air hunger."
Your popping joints symptom is called "loud joint crepitus." Read about it on pagae 25 of Burrascano Guidelines.
You must wait to see a good lyme doctor, so take the appointment in January, and keep calling the office to ask if there are any cancellations. Many get in earlier that way.
You must ask family or others for financial help to pay for the expensive first and second appointments with a good lyme doctor. Otherwise, you can quickly see your life go down the drain. So, make it happen somehow.
Keep researching about lyme doctors. Call the local lyme support groups in your state and adjoining states. See Support Groups on left side of page.
Ask for a lyme friendly doctor. That is a doctor who believes in treating lyme disease long-term, but has a regular medical practice and can see a person within a few weeks. These doctors are not lyme specialists, but at least they will put you on meds until you see a lyme specialist in January.
It is very hard when a person is starting out to be able to find a good doctor. Nearly always, the first doctor they go to is no good. So, continue to do research on the doc you plan to see in January. You never can do too much research.
Be sure that the people who are recommending this doctor to you are very, very knowledgeable, not new to the lyme doctor issue. You want to see a doctor who has cured at least 3 people that you know of.
You want a doctor who follows the Burrascano protocol. That is how I and at least 5 of my friends got rid of this horrendous disease.
When you study the Burrascano Guidelines, look up the medical terms he uses so that you REALLY understand what he is saying.
Study how he says lyme must be treated: high-dose combinations of antibiotics. Read the dosages. Then, compare what your chosen lyme doctor gives you. See if it lines up with Burrascano.
Burrascano also says that the doc must treat you for every coinfection that you have, including babesiosis, bartonella, mycoplasma, etc.
He always recommended testing through Igenex, which is expensive. But, it may be well worth it for you to pay that money at some point down the line. You cannot get well if you have an untreated coinfection.
So, get treated for lyme and babesiosis. You likely also have bartonella. So, look out for those symptoms carefully also. These are called "the big 3." Nearly everyone has all 3.
Make an extremely complete list of your symptoms for your first appointment. That enables the doctor to diagnose your coinfections. So, spend a lot of time on symptoms. Look at the list on pages 9-10 for some help.
We will help you here all we can. You are catching this thing early, so, if you get to a top doctor, you should do well. Let us know how it all goes.
Posted by Ann-OH (Member # 2020) on :
Hey T. Go to the menu on the upper left of this page. Click on "Support Groups ". Find one or more near you. E-mail or call some people from those listings. They will help you find a doctor near you and people near you who will be able to help you through this .
Good Luck! Ann - OH
Posted by Crawgir1 (Member # 40229) on :
I wanted to add that the symptoms you are experiencing while taking antibiotics are "Herx" reactions, which you can research using the search function on this site.
I also have the vision thing, and have been told it's due to the spirochetes being in my visual cortex, so a vision test will not show the difference in eyesight.
Be sure to read Dr. B's 2008 Guidelines, and follow his instructions. I find that the supplements he recommends are very helpful. The least expensive I have found these are at greenandhealthy.com (you need to email them to get a login to access the good stuff).
We with Lyme and other co-infections usually have nutritional deficiencies and genetic mutations which have caused our immune systems to not ward off the spirochetes.
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and I love to read
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