I dont know what to do, im scared

Hi Blackcolon,
Welcome to our community. I'm so very sorry for what you have gone through at the hands of uneducated doctors.

From what you describe, I would say that you have undertreated Lyme disease simply because 4 weeks of abx just isn't enough. It takes 6 - 8 weeks to treat when there is nothing more than just the bulls eye rash, and you had other symptoms as well - so your treatment should have been longer.

We can help you find a LLMD (Lyme Literate Medical Doctor) or a LLND (Lyme Literate Naturopathic Doctor), or you can choose to use one of the herbal/natural protocols. The choice is yours, although it might be very beneficial for you to have a doctor see you through at least the first part of your healing. It's very difficult to get through it without a doctor - heck, it's difficult to get through no matter what type of doctor you see. This is one of the most complex bacteria that is known at this time.

It would be really helpful for you to read through the "New to Lyme? Start here!" thread that sits at the top of the forum. It's packed full of helpful information, detoxing suggestions and even probiotic information.

Let us know how you would like to proceed and we will do our best to help you get to a place where you can heal.

Thank you for responding! I will read the "new to lyme" thread after i post this, i would have done that first but my battery was about to die.

i picked blackcolon because i am constantly running to the bathroom having to go number 2, black is normally associated with bad things so thats why.

Im not sure if my toilet habits are relevant to this disease but i normally jave a normal healthy poop as soon as i wake up, then 2 hours later ill have diarrhea looking poop. Its all flakey and falls apart as i flush the toilet. Then a few hours later ill pass a similar poo, then brfore i go to jed itll be normal.

During my period all my stool is flakey/ resembles diarrhea, and ill go upwards of 4 times a day, it hurts. That goes on for about 3 days.

I went on a different website, i cant remeber which, and asked about lyme literate doctors but they only gave me 3 and none of them will answer when i call. I am also very poor so i dont even know how i could see a special doctor because i cant really pay for it.

A few days after i was prescribed the blue pills, the doctor sent me to get a blood test. However i never got the results of that so i have no idea what coinfections i could have had, if any were even tested for. It was/ is extremely apparent that these doctors did not care about me at all.

Also in october 2014 i became a vegetarian, and February of this year i became a vegan

Thank you for that link.

i live in south Jersey, could anyone message me lyme literate doctors information? Do i have to go through one of them to have tests done to see if i really still have lyme or other coinfections?

With correct treatment could i be able to remember things again? I literally have to write down things i do every day in a calendar

Hi Blackcolon, You’re not alone. I am new here on the forums too. Tremendous leg and neck pain was just a few of my 1st symptoms I had. Doctors would just blame it on sciatica or fibromyalgia.

I went 3 years undiagnosed as I got worse and worse with many other symptoms and now it’s reached my brain, nervous system and heart. I have memory, attention problems, brain fog, I lose time gaps, head vibrations, headaches, dizziness, sweats/chills, ringing in my ears, blurry vision, eye pain, visual horizontal lines, visual fast moving snow with eyes open and closed, my brain does not shut down at night when trying to sleep, insomnia, mild hearing lost in my left ear, both ears get muffled (my ENT confirmed it's from the ear nerve which is probably from Lyme), my personality changed, everything I loved to do has been sucked right out of me, I don’t get excited to do anything anymore not even the things I used to look forward to and that I loved before Lyme, I don’t look forward to anything anymore. I am just blank and I don’t even know who I am anymore. I don’t social with people and are withdrawn from everyone. I stay away from people. I also have head tremors (my head shakes). Lyme has also given me chronic sinus problems (head MRI showed) which I have never had in my entire life. My head and nervous system is a mess!! all because the doctors did not treat me on time.

3 wks ago I finally was diagnosed with Lyme Disease by a LLMD. He has started me on the Blue doxycycline hyclate capsules 100mg x 2 a day and said he will treat me for 6 months. Although I don’t think the milligrams are enough per day and I question rather I should be on IV at this point... I have to talk to my doc about it. I think it’s just starting to work because I am starting to feel better little by little.

I was constipated for months until I started the antibiotics and things loosened up which is a relief but now I am freaking out because I see these dead string things in my stool and more and more are coming out. What the heck are they, parasites? It’s freaking me out. I guess it’s all part of Lyme and I guess it means my medicine is working but I am not on any co-infection medication yet only herbs and antibiotics and I have tried the salt/C so it’s another mystery on what it is and I will go over that with my doc too.

It’s kinda been a roller coster. One day I think I am getting better then the next I have a few bad days right back were I was but the good days are getting better and longer so I think it’s starting to work. My doctor has not started me on any co-infection meds which worries me. I need to talk to him about that also.

I am sure co-infections are what I am dealing with right now too. My next app isn’t for another 2 wks. I have been trying to figure out what the best natural protocol will be to get rid of co-infections (Lyme parasites). I have experimented with the Salt and Vitamin C protocol and that works… I have tremendous Herx Reaction (which I think is a good sign it works) with Salt/C protocol, it really takes a toll on my body, head and heart so I stopped it for now until I see my doc.

My heart is hurting, aching and giving me more palpitations and that scares me, I am still debating if I should go to ER to get my heart checked out or if it’s just normal Lyme symptoms and I have to deal with it. Anyway, maybe my doctor will prescribe me something for co-infections so at least I know I will be covering that area of the disease. I don't want to worry about if the salt/C is further hurting my heart.

I am not sure what to do about co-infections at this point but hopefully my doctor will know or I will have to find a new doctor to cover the co-infections. It’s just another thing I am worried about.

Blackcolon, it sounds like you were not treated long enough and you might have co-infections. A lot of the head symptoms, neurological, memory symptoms (which I have too) are from Lyme co-infections which have to be treated with a different type of prescription medication along with the antibiotic.

You have to find a LLMD that will treat both Lyme and Co-infections, unless you want to try all the natural remedies out there which from the sound of it some people have successful results but there are a lot of Lyme and co-infection natural treatments out there (maybe someone can put a list of them all and make a sticky for it so it stays at the top? we can all add to the list as we find them and discuss it?) and you would have to experiment on which ones work for you. now I hear it’s important that a doctor check/test kidney, liver, heart, blood pressure and vitals while on any treatments even natural ones because they all could still cause harm to the body if not done right.

I think it’s best to start with a LLMD first then figure out what to do from there and research, research, research so you know what to expect and kinda have a direction on what to do and ask the doctor questions. It’s a shame but the truth is we are all our own doctors because Lyme is so new to the medical field and many doctors don’t believe, don’t have a clue or are to scared to help.

I must say it was very frustrating finding a LLMD who takes my insurance. I don’t have the money to pay $1000's for office visits and treatments. Be careful because some of the LLMDs are taking advantage of Lyme patients. Be careful about how much they charge, one doctor wanted $1800. for the 1st visit and didn’t take any insurance. That’s just crazy! the next wanted $900 and the next $400., I must of called 30 doctors until I found the right one. I also had help from a few NJ support groups.

After I knew I had to find a LLMD it took another 2 months to find the right one that takes my insurance and would treat me for clinical symptoms and not just go by the test results. I still don’t know if this one is the right one or not but I am glad and thankful that I am at least starting treatment now.

To find out more about this horrible disease... the movie “Under our skin” is free to watch on Hulu. I learned a lot from it. You may want to watch it also so you are more educated about Lyme and all the politics behind it.

http://www.hulu.com/watch/268761

hope this helps

Post Edited (never-give-up) : 6/1/2015 4:40:02 PM (GMT-6)

Blackcolon, if you have insurance, I strongly suggest that you visit a cardiologist. It seems that the fainting spells are due to low blood pressure. Some people who have Lyme have blood pressure issues so making sure that your heart is working fine is the first thing to check. If you were to faint while driving or standing could really hurt you so please have it checked out.

Have you tried changing your diet to see if it helps with the loose bowel movements? Perhaps now that you have changed to vegan your body is missing some nutrients that you might need to replace. As far as the chest pains; it is possible that it could be digestive in nature. I too suffer from chest pains and have associated them with my digestive issues. My doctor has prescribed proton pump inhibitors (PPIs) but I am holding off on taking them for now. You may want to keep track of what you eat and see if by changing some of the items you will begin to pooh better.

My insurance isnt very good but I know for a fact that i have low blood pressure. I had an EKG done last.. august? And it was "normal" but that doctor wasnt interested in my health or trying to help me in any way.

I always know when im going to faint but i do get scred when im driving because theres always a chance where i wont feel it coming. One of the first times i fainted was in the shower and i hit my head on the towel rack. I didnt recognize the feeling because it never happened before.

Ive been trying to keep track of what i eat, but at night when i go to write it down i cant remember everything that i had that day. Im not sure if im eating too much fiber or what because its really easy to poo. I guess i should carry a note pad around all day

But i could be missing some kind of nutrients but im definitely getting more essential things in my body than before.

From roughly ages 6-19 all i ate was junk food and white pasta/ rice. Im talkin rice crispys, chocolate milk, gushers, fruit rollups, "potato" chips, cookies, cakes, ice cream every single day. The amount of sugar i was consuming was disgusting along with all the chemicals in the "food", pesticides, artificial colors and flavorings.

My diet was so bad my doctor tried to tell me i had pre diabetes at age 12

Im really against pills, i dont trust them or the doctors. Im afraid that the side effects would be worse than the original problem. My friend has been hooked on antidepressants and adderall for over 5 years so im pretty concerned about rhat stuff

I have never even taken birth control pills lol

Blackcolon said...
My insurance isnt very good but I know for a fact that i have low blood pressure. I had an EKG done last.. august? And it was "normal" but that doctor wasnt interested in my health or trying to help me in any way.

and

Im really against pills, i dont trust them or the doctors. Im afraid that the side effects would be worse than the original problem. My friend has been hooked on antidepressants and adderall for over 5 years so im pretty concerned about rhat stuff

I have never even taken birth control pills lol

A LLMD internist will help you figure out the fainting, blood pressure, heart, digestive issue and guide you. I think an LLMD internist is best to start with because that type of doc covers a lot of issues plus is Lyme Literate. but I am the blind leading the blind right now and only going by what I have experience so far with my LLMD. I am not so sure If I will need an advance LLMD later or not. My next appt will hopefully give me a better idea if I am with the right LLMD doc or not. I am northern New Jersey.

I know what you mean about taking pills. I am the same way but I am getting so disparate to feel better.

Post Edited (never-give-up) : 6/1/2015 4:47:44 PM (GMT-6)

BC, my email is enabled and I am in south/central jersey. My son has been in treatment for over a year now and I have doctor names to give you choices.

You can also register at the ILADS site and they will send you names. Traveler has names too.

So so sorry you are not well....ei

Traveler said...
I was going to say the same thing as Happyjo- there are many claims of things curing people from Lyme disease, but where are those people now? If they are the ones pushing those so-called cures, that sends up a red flag for me. Besides, I checked out the Salt/C protocol years ago, and read how it got started (they have since taken down that part of the site, hint, hint) - and still choose to use an established protocol.

There are quite a few natural protocols that have been used and proven to work, why not stick with one of those? Why waste time and money on things that have not been proven to work?

Just because something makes you feel worse, it doesn't mean it's healing you. The herbal protocols that are used most often here will heal you. If you have insurance, see if you can find a LLMD/LLND instead so that you have some much needed guidance as you navigate through your healing.

Always, always question those that push their own protocols.

I have read some people say herbs work well and some say it doesn’t. I read antibiotics don't always work because the Lyme hides in biofilms and it’s impossible to kill/cure it all without breaking up the biofilms 1st. Doctors are prescribing 7 different drugs at the same time just to experiment to see which ones work or not on Chronic Lyme patients. I see everyones signatures have many experimental drug mixes or natural mix recipes and no two are alike but no one has the same methods that are working for everyone. a lot of people have Lyme for 5/10/20/30/50 years because nothing has helped them but then there are some that are cured. That’s very scary to me to think I may not ever be better and no one has the perfect combination that works for everyone.

I also read herbs can hurt the liver if one is not careful. I think it depends on the person and what they are trying to cure rather any of these protocols and recipes work or not, yes? no? I don’t know but it’s all very confusing and frustrating to me.

My LLMD does have me on herbs too... Flax seed, Probiotics, Milk Thistle plus the Antibiotics. I think that is what is helping me so far plus the antibiotics but I think the Vitamin C has helped me too and the salt may be killing something because I have these stringy thread things in my stool and I am infested with them which is freaking me out. They didn’t start coming out till I stated taking the salt. Unless that’s the herbs working and killing what ever it is? I don’t know but I stopped the salt for now until I talk to my LLMD about it.

I also was reading about water Ozone Generators that can kill Lyme. Anyone try that? Amazon reviewers say it works for Lyme but those reviewers could be fake? There are 295 positives which looks very promising that it would work.

Thank you all for replying, i am pretty desperate for a cure but im not going to jump right into something without researching it to the best of my ability so no worries c:

Im not sure if its against the rules to discuss cannabis, its medicine so im not sure why it wouldnt be allowed. But i read a blog post about a woman who cured, or at least stopped her symptoms with cannabis oil.

Has anyone tried or heard of this before?

I have used cannabis for pain management and it helped tremendously, now that im not using it i feel every pain in my body at all times

I read a lot of people in these forums and other Lyme forums say they were cured or getting relief with natural protocols like herbs, oils and many other natural combination protocols. I found people talking about the salt/c as well which is also natural but they all need caution because all natural remedies can be dangerous if taken together or too much. This is what my Health Care Nutrition Store told me. It looks like Traveler was healed with only herbs according to the signature?

Blackcolon go to a Health Care Nutrition Store and talk to the owner or who ever is the most educated there about all the herbs and oils that may work for Lyme. They are so educated there and will go over a lot of it with you on which to use and which to be careful about. That’s what I did and I learned a lot.

I also learned about Colloidal Silver which was suggested to me from my Lab technician who drew my blood, she said she was cured from Lyme with Colloidal Silver.

There are so many ways to treat Lyme naturally it gets confusing which to try first and which combination will work best. You really have to be careful though.

You just have to throughly research them all and figure out which ones you want to try. That is what I am doing also. I myself will be trying the Cinnamon Oil and maybe do the salt here and there since I am seeing what comes out of my stool, which tells me it's working but I am concern about my blood pressure so I stopped it for now until I talk to my LLMD.

There are many threads about all these natural remedies. Here’s another way to find them.... in google go to advance search link... put in any website like this one under the "site or domain:” box then put any keyword you are looking for under "all these words:” Google will bring up ever single thread with those keywords. This is a good way to search because even if they are not on the site anymore you can still view the cache page of it with the little arrow next to the titles. Here is the link for this site to search with in it under google..... This way is better to search on any website.. you can just copy this into the address bar too...

cannabis site:https://www.healingwell.com/community/default.aspx?f=30

Hope this helps because I am in the same boat as you and really want to go all natural eventually. I mean from the sound of it antibiotics are only going to get me so far then I will have to maintenance with natural remedies later so I am doing all the research now.

Post Edited (never-give-up) : 6/3/2015 10:31:27 AM (GMT-6)

Going to a Health Food Store will educate but you don’t have to necessarily buy what they suggest, just listen and learn their opinions.

I have learned a lot by doing that and it has gotten me this far on making my own decisions vs not knowing any thing about Lyme.

Like I mentioned before it’s frustrating because one protocol may work for one person but not work for the next since everybody is different.

No body could say what worked for them may work for everybody because it all depends on what they have or what they are trying to cure. It seems to me all Lyme patients are different depending on which co-infections they may have or how severe their Lyme is. That’s why some of these LLMD doctors can’t cure all Lyme patients... Everyone is different.

Post Edited (never-give-up) : 6/3/2015 10:59:37 AM (GMT-6)