You Think You May Have Lyme Disease – Now What Do You Do?

12 Apr


You think you may have Lyme disease now what do you do?

I have put together some information for those who may think they have Lyme disease and have no clue where to start. You may have read some symptoms or heard from others about Lyme and think you may have it. This can be a frightening and overwhelming feeling. Depending on how much you know about the truth of Lyme disease you may be scared or you may just think “eh Lyme is no Big deal”.

For starters the Internet is full of lies and false information on Lyme disease. Do not read anything posted by the IDSA that will only give you false hope. I have heard all the time from friends, family, co-workers and strangers “so and so had “lymes” disease and they are just fine and working so it is no big deal”. Do you know how far from the truth that is? First of all it is called Lyme disease not “Lymes” disease like almost every non-Lymie will say. So if you hear anyone say Lymes/Limes disease then stop listening because obviously they don’t know squat about it.

You will hear people say “my friend had Lyme disease and she just ate fruit all the time and it went away and now she is cured”. You may hear people say “my mom has Lyme disease and it has never bothered her and she works so why are you trying to get disability”. Don’t let it get to you, these people are just uneducated about Lyme and that is why we need to spread awareness.

Lyme disease is different for every person. Those who claim they are cured may have been bitten and treated right away or they only had just Lyme disease (Borrelia burgdorferi) without all the coinfections (I will discuss this below) and other tick-borne diseases.

For most of us Lyme sufferers/warriors we have Lyme disease and a few coinfections or tick-borne diseases along with other medical issues Lyme disease caused. Most of us have Late-Stage/Chronic Lyme disease. And YES Late-Stage/Chronic Lyme disease is very real! Many have thyroid issues (Hypo, hyper, Hashimoto’s), Fibromyalgia, Postural orthostatic tachycardia syndrome (POTS), heart problems, organ problems, gut issues, candida, Epstein-Barr virus (EBV), Mono, IBS, spine and disc issues….the list goes on. These are just the medical problems and this does not include the hundreds of painful, annoying and harmful symptoms we all suffer from.

The truth is hard to swallow but you need to know. Lyme disease is not easy to get rid of and it can/will be a long, expensive, lonely battle. You will never be “cured” as they say because you will always have the Lyme and coinfections in your body that can come back at any time. You may go into remission but that does not guarantee anything. For the lucky few, they will get treated and never really have all of the symptoms of Lyme disease. They may return to their normal lives and be healthy again. I don’t know anyone who has had this happen and I know 100’s of Lyme disease sufferers. I have seen 9 people just in the past year pass away from Lyme disease or Lyme related issues.

Your life will change drastically from how you were while healthy if you do test positive for Lyme disease, coinfections and other tick-borne diseases. It is very surreal and a living nightmare. Once you find out more and more about Lyme disease and all the politics it will just frustrate you more. But you will find a lot of caring, loving people who are willing to support you during your Lyme journey. Facebook has a lot of great Lyme groups to join. Don’t try to go through this alone, find somebody who will be there for you to watch over you and be there for rides or emergencies or to borrow money from..etc. Hope this doesn’t sound mean or scare you but I wanted to post the truth with no sugar coating.

Below are some tips and other information you will need to begin your Lyme journey.


Prepare to hear and see weird and gross things

You may think right now there is no way you have intestinal parasites (worms) but chances are you do and you will be treated for them. I never thought I had them either. But I have seen proof I do. You will be treated with RX meds like Alinia and Ivermectin. There are herbals you can also take. I recommend getting a stool sample and getting your Metametrix results. Metametrix will tell you what you have and what your body may be immune to for treatment. If you get treated just wait until you see what happens. Gross!

You will hear others talk about doing coffee enemas. I know people who do the coffee enemas and drink their own urine (Urophagia). People do frequent colonics. There are many ways to try and heal and treat Lyme disease. I have heard of parasites crawling out of the skin, ear and eyes. There are new weird things you should expect when talking with your doctor and others about Lyme disease.

**unrelated but if you do the at home stool test you may also want to request and adrenal test kit. You spit 4 times in a day and check your cortisol/adrenal levels in a 24 hour period. You may discover your adrenals are high at night and causing insomnia or low causing fatigue.


Rules of the Internet with Lyme disease

When asking for or talking about a Lyme literate doctor while on the Internet please do not mention the doctors names, locations or other personal information. Some people will mention an abbreviation like Dr. X but if you do use an abbreviation do not include the location. This is for political reasons so please respect the doctors. It is okay to use them in a private email and private messages (PM). Just don’t post them on your facebook wall or any other social media site where everyone has access to see your posting.

If you want to ask where you can find a Lyme doctor there are groups you can join and ask privately. Yahoo has groups for each state and there are web sites such as MD Junction where you can ask for a doctor. Just ask in your post “looking for a Lyme doctor in Maryland, please private message me”. You should get a response or two within hours.

Acceptable: “My LLMD in my city is great”

Not acceptable: “My LLMD Dr. X  is great and he is located at 555 Pine St in Wood, California 55555 and his number is 1-555-555-5555”



Check if your symptoms match the symptoms brought on by Lyme disease in all stages. Compare your symptoms to see if you may have early stage or late stage Lyme disease. Check your symptoms and compare them to coinfections or other tick-borne diseases.

(Click the links below for symptoms. These are only the most common symptoms there are much more)

Lyme disease symptoms

Coinfection symptoms

Most common symptoms reported by 1000 Patients with persistent borellia infection: (% of Patients):

Fatigue: 96 %
Brain Fog: 87 %
Joint Pain: 78 %
Loss of Balance: 60 %
Headaches: 57 %
Neck Pain: 56 %
Muscle Twitching: 55 %
Insomnia: 52 %
Muscle Weakness: 51 %
Vision Floaters: 48 %
Mood Swings: 47 %
All Over Body Pain: 43 %
Noise Sensitivity: 42 %
Heart Palpitations: 41 %
Light sensitivity: 40 %
Night Sweats: 36 %
Ringing in Ears: 36 %
Deep Bone Pain: 35 %
Low Body Temperature: 35 %
Numbness Hands and Feet: 33 %
Air Hunger: 30 %
Migraines: 30 %
Rib Cage Pain: 30 %
Sensitivity to Smell: 26 %


Links for Lyme info and resources

(some of these web sites are made by Lyme sufferers)

IGeneXThe best lab for testing blood work for Lyme disease

ILADSInternational Lyme And Associated Diseases Society

lymedisease.orgFormerly California Lyme Disease Association (CALDA)

Wikipedia Lyme DiseaseInformation on Lyme disease

Lymepedia.orgInformation on symptoms and more for Lyme disease

whatislyme.comInformation on what Lyme disease is


Infectious Diseases Society of America (IDSA) is the enemy!

The IDSA sets the faulty guidelines for treating Lyme disease. They do not believe that Lyme disease is chronic and they believe 2 weeks of antibiotics and you are cured. This is why insurance companies will only cover 10-14 antibiotic pills and why so many people think we are not chronically ill. I don’t want to get in to much with these people but just know they are not our friends.

If you want proof read my other blog post about what one infectious disease doctor said to chronic disease sufferers on the IDSA Facebook page HERE.

or view an IDSA Protest below


Living with Lyme is not cheap!

Unlike many other illnesses, Lyme disease treatment is not covered by your insurance company. Some doctors are covered but here in California nothing is covered except some meds. I have Anthem Blue Cross.

Lyme Literate Medical Doctor (LLMD) Costs:

Cost range of an LLMD – $200 – $1500

My LLMD charges $325 per visit up to an hour. Most LLMD’s only give you 30 minutes and can charge more. This is out-of-pocket and not covered by your insurance. In rare cases you can submit a receipt to your insurance company and they may cover it but they would have to be some top notch, friendly insurance. Trust me I have borrowed money for much needed visits. Many people will have donations set up at church or on web sets to help with payments. I haven’t tried it yet but some of my friends have said they get a lot of help this way.

RX, IV, Injections, Medical Supplies and Supplement Costs:

Many Lyme patients will go the antibiotic route through an LLMD. They usually start you on Doxycycline. The treatments may get more aggressive as your treatment goes on. Each person and person’s body and mental state are different. Most can handle oral antibiotics yet others get IV or injections if their stomach and body do not handle orals well. The Lyme medicine will come in many forms from capsules, tablets, huge pills, injections, suspension (liquid), IV bags…etc. Don’t be surprised if you end up giving yourself injections with a huge 18ga 1.5′ needle one day or if you have a port (portacath) in your chest or PICC Line (peripherally inserted central catheter) in your arm.

The Lyme meds can be very expensive and you will fight with your insurance frequently. If you do not have insurance there are some web sites that offer cheap prescriptions. Many use Canadian or Mexican pharmacies. My insurance will deny 80% of my meds and I have to go back and forth trying to get them covered. Mepron was $1500 at my pharmacy and my insurance did not want to cover it. I finally fought and had 2 months worth covered but no more than that. Zithromax is never covered no matter what and I pay about $100 or more per month. I can never get Zofran (for nausea) covered.

I have heard of a girl who was paying $30,000 per month for her IV treatment. Her parents must be rich? Expect high costs and you may go into debt or even go bankrupt unless you have a large savings or a spouse with a good job. I went into debt after blowing through my $12,000 saving in months and I had to file for bankruptcy. That really hurts your pride when you have been working hard all your life to be somebody. I used the money I was going to buy a house with and I lost my job from Lyme when I was getting promoted. I lost my car and haven’t driven in 2 years. Stories like mine are common.

So expect to fight with insurance and expect to not be able to get some meds. You will need to ask the doctor for an alternative. Pharmacies can help with costs by using a generic plan to lower the prescription costs if you ask nicely.

Here are some ball park range costs with insurance:

Prescription costs (monthly): $10 – $1000’s

Supplements/Herbals/Tictures (annually): $100’s – 1000″s

IV’s and Supplies (monthly): high $100’s – $10,000’s (and sometimes more)

Injections and Supplies: $100’s – $1000’s

Testing & Blood Work: high $100’s – $1,000’s

Misc such as Gas, Bridge toll, special diet Food: $100’s – $1000’s


Time frames for healing

Like I said each person is a different case. Depending on what you have and how weak your immune system is. For the best case scenario and someone who may have early to mid stage Lyme I would say to expect at least 2-3 years before you may be able to feel somewhat normal again. For others like myself I am expected at least 6-8 years before I find any relief since I have late-stage Lyme and a ton of other coinfections and medical issues. I also have Fibromyalgia like many and that will most likely never go away. My aunt has had Lyme for 20 years (no coinfections) and she treated for 8 years before she was able to go into remission and work again. She wrote to me recently and says she is feeling symptoms and using her rocephin injections again.

Healing time frame: 2 years – possibly never (5-8 years on average for some)


Testing for Lyme and Co’s

If you do get tested make sure your doctor is submitting the blood work to IGeneX lab. You will most likely be given a Western Blot test, ELISA or a CD57 test. These tests are all very inaccurate because Lyme disease and coinfections (co’s) are hard to catch. If you do test negative that does not mean you do not have Lyme or co’s. Quest, Lab Core and other labs are even less accurate so use IGeneX since they know all about Lyme disease. These tests may or may not be covered by your insurance. I believe MediCare will cover some. My insurance did not cover any testing so I did not have all of the tests I could of had. There are numerous tests and you can ask around in the Lyme community for more info.

There is a program that will help cover some of the IGeneX testing costs. They can cover up to 75% of what your insurance did not. Here is there info and link.

Test Results and how to read them

CD57 Results:

  • >200 is normal
  • < 20 severe illness
  • 0-60 is seen in chronic Lyme disease
  • > 60 Lyme activity indicates improvement

Western Blot and what each band means:

  •  9 cross-reactive for Borrellia
  • 12 specific for Bb
  • 18 unknown
  • 20 cross-reactive for Borrellia
  • 21 unknown
  • 22 specific for Bb, probably really the 23/25 band
  • 23-25 outer surface protein C (OspC), specific for Bb
  • 28 unknown
  • 30 unknown; probably an outer surface protein; common in European and one California strain
  • 31 outer surface protein A (OspA), specific for Bb
  • 34 outer surface protein B (OspB); specific for Bb
  • 35 specific for Bb
  • 37 specific for Bb
  • 38 cross-reactive for Bb
  • 39 is a major protein of Bb flagellin; specific for Bb
  • 41 flagellin protein of all spirochetes; this is usually the first to appear after a Bb infection and is specific for all Borrellia
  • 45 cross-reactive for all Borellia (sometimes people with Lyme who have this band positive also have the co-infection Ehrlichiosis)
  • 50 cross-reactive for all Borrellia
  • 55 cross-reactive for all Borrellia
  • 57 cross-reactive for all Borrellia
  • 58 unknown but may be a heat-shock Bb protein
  • 60 cross reactive for all Borrellia
  • 66 cross-reactive for all Borrelia, common in all bacteria
  • 83 specific antigen for the Lyme bacterium, probably a cytoplasmic membrane
  • 93 unknown, probably the same protein in band 83, just migrates differently in some patients


Early, mid or late stage (chronic)?

This question can be answered by your doctor. There are different stages of Lyme disease and each stage gets progressively worse. You can search the Internet to find more information on stages or ask your doctor. There is too much for me to write that here.

Early Stage you will feel flu-like symptoms that will come and go and you can develop rashes. You will get the warning signs that something may be wrong with you. This is when you go to the doctor and they tell you everything is fine and they found nothing wrong in your blood work. Then for the next who knows how many years you will get sick often and have mystery illnesses or symptoms. You will be undiagnosed again and again. Be you own advocate and tell your doctor to test for Lyme disease. If you are negative find a second or third opinion. I was undiagnosed for 28 years!

Late-Stage is when it has become weeks, months or even years later. You may have problems with your brain and nervous system, muscles and joints, heart and circulation, digestion, reproductive system, and skin. Symptoms may disappear even without treatment and different symptoms may appear at different times. The Lyme spirochetes are hiding in your body. They may be in cyst form or have a bio-film which makes them tougher to find and kill.

Some will become bedridden, have turrets like twitches of the body, may have difficulty standing or walking….. the list goes on. When the disease is at it’s worst you may find doctors who think you have MS, ALS, movement disorders, Parkinson’s disease ….etc. Lyme disease mimics many other diseases and shares the same symptoms.

You will find yourself getting blood tests, MRI’s, CT Scans and other test frequently. The doctors will have no clue what is wrong with you and send you to one specialist after another.

Doctors you may see when they have no idea what you have

You will go from one doctor to another and some may tell you that you are a “hypochondriac”, “crazy” or even a “pill popper”. Don’t let them talk to you like that and don’t take that for an answer. Never give up if you know the truth. Nobody knows your body better than you do.


Don’t trust family or infectious disease doctors with your Lyme dx

I’m not saying that all doctors are not to be trusted but many family doctors and infectious disease doctors..etc were never trained or educated with Lyme disease. If you mention the word ‘Lyme” around them they will roll their eyes or even laugh. You may hear them say things like “there is no Lyme disease in this state” or “get out of my office we don’t treat Lyme patients here”. I have heard of people with testing and proof being kicked out of a doctor’s office who refused to treat them or acknowledge they had chronic Lyme disease.

Find a good Lyme Literate Medical Doctor (LLMD) who is International Lyme And Associated Diseases Society (ILADS) approved. You can also find a Lyme Literate Naturopathic Doctor (LLND) or Homeopathic Doctor who is familiar with Lyme. Make sure this doctor fully understands Lyme disease and coinfections and truly believes that it is real and chronic. You can chose how you want to be treated for Lyme whether it is antibiotics, herbals or using the mind, body and soul it is up to you. I strongly believe in using antibiotics with a combination of herbals. Antibiotics saved my life when I was dying from elderly pneumonia at age 21.


Where is everyone I am so lonely

I have heard this over and over and experienced this first hand. You will lose friends, family and sometimes a spouse or girl/boyfriend because of your illness. You will learn who your real friends are and make new ones along the way. People will come and go. I see so many people posting about how they have no family or friends that will talk to them in years and how nobody cares. This is true. You will feel alone, hurt and sad a lot. Nobody will seem to understand what you are going through and most people don’t care. Life will go on without you. You will see people on tv smiling and having fun and you will wish that was you.

Being single and trying to date is horrible. I am single and have been for 5 -6 years. Be fore I was sick I was never alone. Now I can’t even get a potential date to talk to me once I mention Lyme disease. I will get 3-4 potential dates on dating web sites who are highly interested. We will chat a few times and then they ask me “where do you work and what do you do for fun”. Once I tell them the truth that I am sick they never write back. This just happened to me last night. I was going back and forth with a girl and she seemed to really like me. She asked why my profile says disabled (since I am officially disabled) and I explained that I am ill. I told her I am still a fun, funny and romantic guy who has a lot of love to give and she decided to end our connection without writing back why.

I feel like damaged goods and my self-esteem is gone. I know many who are just like me. This is a tough and depressing road to travel down especially alone.I do have a crush on someone but I don’t think she knows I exist yet. Maybe I will get lucky who knows.

So expect to lose family, friends and even co-workers as friends. The dating world is difficult. Lyme will break you down. You will see some stuff you never thought you would see and fell like absolute crap. It is a battle and nothing is what it once was when you were healthy.


Helpful while healing

Since I am bedridden and have nothing to do all day I find these things very helpful. They keep me from boredom and help with Lyme depression.

  • Music (takes me back to my better days and nostalgia)
  • Television (watch my weekly shows)
  • Movies
  • Reading
  • Blogging (spread awareness, share you journey and keep a diary)
  • Optimistism
  • Smile and laugh
  • Love the simple things in life


Lyme abbreviations

I see a lot of people asking what abbreviations mean when Lymies are talking to one another. Here is a simple list I put together:

  • LLMD  = Lyme Literate Medical Doctor
  • LLND  = Lyme Literate Naturopathic Doctor
  • ABX = Antibiotics
  • DX = Diagnosed
  • RX = Prescription
  • OTC = Over the counter
  • Lymie(s) = Lyme patient/Lyme sufferer/Lyme Warrior
  • Co’s = Coinfections (Babesia, Bartonella…etc)
  • Babs = Babesia or Babesiosis
  • Bart = Bartonella
  • Zithro = Azithromycin or Zithromax
  • Yellow Paint = Mepron (thick yellow liquid for Babesia)
  • Worms = intestinal parasites
  • Bugs = Lyme spirochetes or co’s in the body
  • Spiro = spirochetes
  • ILADS = International Lyme And Associated Diseases Society (Good)
  • IDSA = Infectious Diseases Society of America (BAD!!)

I’m sure there are many more but my back is killing me and my neck is stiff so I think I will end this here. Good luck on your journey and I wish you all the best.


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