Beginning Chronic Lyme Disease Treatments How It Changed My Life

how-my lyme treatments stopped me in my tracks

Beginning Lyme Treatments

When I started my treatment for Lyme disease in March, I didn’t really know what to expect. When my integrative health doctor handed me the list for my very first protocol, my heart sunk. It was long, it was expensive. Almost all of it was out of pocket and uncovered by insurance and it was intimidating.

It was then, that I truly realized what a long, hard road I had in front of me. During my 2 hour first appointment, we reviewed my long and difficult medical history. My doctor assured me that he would do his best to help me get better but, that it may take many years because I have been sick for such a long time.

beginning Chronic Lyme Disease Treatments

                         

My first Lyme disease protocol

At the top of my treatment protocol was this statement:

” Lyme disease is caused by a bacteria  carried by ticks. It is an imitator that is quite persistent  and difficult to kill. There are a variety of ways to attack Lyme. We will start  with the  protocol below and reassess in two months. It is a chronic disease and subverts the  immune system and so it may take  months to years to eradicate it. Although complete recovery is rare, you should begin to see improvements as the treatments progress. There are often co-infections  that we may have to address with other items.”

It also had this little paragraph and could I just add, that the word “expensive,” is an understatement. 

“This list is overwhelming and expensive and we understand that, BUT Lyme is a very, very difficult bacteria  to treat. All of these things work together.” 

an-introduction to lyme disease treatments

 

The following is my very first protocol for killing Lyme.

It is the devil, let me assure you. Within two days of starting this protocol, I had a major herx reaction (a.k.a healing crisis.)
By the fifth day, I was in the emergency room with heart attack symptoms and in SO MUCH PAIN, along with a tight and swollen throat.
It turned out that I had an allergic reaction to one of the antibiotics, and the herx, lucky me.  I also had major esophageal spasms and a severe case of costochondritis, because my GERD was aggravated from the protocol. I was scared.
Thankfully, I made it through and my doctor cut the protocol in half. My body just could not handle it. Such is the case with treating Chronic Lyme, you take two steps forward and ten backwards.
So get a load of protocol “A” as my doc calls it, you don’t have to read the whole list I am just including it because it gives a clearer picture of the scale and length of this thing. IT IS MASSIVE! This protocol is eight weeks long. That is a really long time to be absolutely miserable.



 Protocol “A”

For killing the bacteria: (Scripts are in red)

Graviola Max  Capsules  2 capsules twice a day or Spiro if available

Amoxil 1500 mg twice a day  for 21 days
(if penicillin allergic Clindamycin 600 mg three times a day 21 days)
probenicid  500 mg a day for 21 days  only if Amoxil  is used.
Doxycycline Hyclate  200 mg twice a day  28 days. This is a prescription.
If there are many neurological symptoms consider also fluconazole  200 mg a day for 28 days.
Grapefruit  Seed  Extract  5 drops  twice aday
Knotweed   whole plant capsule   1 twice  a day or Tincture  36 drops twice a day.
MesoSilver  1 tsp  daily
Oliverex 1 capsule twice a day with meals
protocolA
Biocidin Drops  4 drops in ¼ cup of water with some lemon juice twice   a day.
Loratadine  10 mg  once a day
Andrographis 500 mg twice a day.
END this protocol with FOURTEEN days of tinidazole 500 mg twice a day.

For Anti Oxidation:
Green Tea extract 500 mg twice a day   or drink green tea throughout the dayVitamin C 1000 mg twice a day.

For Anti  Inflammation:
Turmeric curcumin  two a day
Boswellia twice a day 
 
 
For Immune support and Cytokine Modulation:
Colostrum  1 tablespoon or more a day. Also has antibiotic and repair properties
Cats Claw 2 capsules twice a day
Low Dose Naltrexone 1-4.5 mg a day (this is a  prescription from a compounding pharmacy).
Ashwaghanda    125 mg  twice a day 
 
Scutellaria Baicalensis  36-72 drops twice a day
Red Sage  36-72 drops twice a day
Kudzu   36 drops twice a day 
For Detoxification and liver support:
Liver Regenerator  2 capsules a day
Biotonic   5 drops in water twice a day
Drink 64 ounces of filtered water a day
Alpha lipoic Acid  250mg twice a day or 600 mg once a day
Minimize alcohol
For Breaking down Biofilms:
Nattokinase  1 capsule with dinner or serrapeptase  1 a day
protocol A NAC 600 mg twice a day
After showering while still in the shower, spray your body with hydrogen peroxide  and let it set for a a couple of minutes  while your pores are open so you can absorb easily.
 
For Nutritional  and mineral  support:
The main nutrition source  is collagen so taking  in more collagen replaces what they are stealing. It is not “just feeding” the bacteria  because they will take it whether you  replace it or not.  Beauty Bursts 1-2 a day will help replace collagen.  Or great lakes gelatin 1 tsp twice a day
manganese 30 mg a day
Ginger slices twice a day or Ginger pieces  5 a day
Surprisingly Stevia has anti Borrelia effects So use it to sweeten something three times a day
lithium oroatate 4.5 mg twice a day  taken with 2 fish oil capsules  and vitamin e mixed tocopherols  400 u  twice a day (Protects the brain).
Olive Oil  1 tablespoon a day
real licorice  (glycyrrhiza ) is helpful  here You can get the tincture. If you have high blood pressure monitor it every couple days.
Lot’s of fruits especially berries. Dark Chocolate  1 square a day
 Health as it Ought to Be  Topical Magnesium    to the back of the legs  at night  nickel size amount in each hand. 
Life Extension  two a day   twice a day
Coq10  100 mg a day.
 
Eat more raw, organic,   foods that are NOT genetically-modified
Meats  and eggs ( if not sensitive to)  Plenty of vegetables ( makes the environment  alkaline).
Lot’s of fruits especially berries. Dark Chocolate  1 square a day
For Gut support:
AVOID sugars, excessive starches, processed foods, fried foods, peanut products, canola oil and hydrogenated oils. Avoid all wheat products and all cow-dairy products . (Colostrum is OK)
NOW Probiotic 10 strain  100 billion  at bedtime
Fermented foods daily   sauerkraut raw, kombucha, kimchi, , pickles  Bragg’s Raw Vinegar.
 Honey is encouraged.
Here are  herbs and what they do. We have to  fight lyme in all these areas.
Protecting Endothelium
Green Tea (camillia sinensis)
Knotweed
Quercetin
Stephania
Cytokine  modulator
Salvia miltiorrhiza,
Scutellaria baicalensis,
Knotweed, 
Andrographis
Cordyceps sinensis,
 kudzu
Relora,
 gingko biloba 
 andrographis
Olive oil
Ginger
Schisandra Chinensis
Isatis
NAC
elderberry
colostrum
Glycyrrhiza
Protect  and replenish
collagen
Echinacea augustifolia not purpurea
Scutellaria baicalensis
Triphala guggulu
Rosemary and lemon balm
quercetin
curcumin
Gelatin 
Hyaluronic acid
green tea  knotweed
Prunella vulgaris
 atractylodis
MSM
zinc 50 mg 4 times a week
copper 2mg twice a week
Bee Pollen
Kudzu
selenium 200 mcg 
Immune modulation
Low dose naltrexone
Colostrum
Eleutherococccus
Rhodiola
Cat’s Claw
Ashwaghanda 
Reishi
Protect and restore damaged structures
Stephania for nerve
Low dose Naltrexone for nerve damage
Lion’s Mane
Bidens Pilosa
Mitochondrial integrity
Motherwort
NADH 10-30 mg twice a day
D-Ribose
L-Arginine
L carnitine
Alpha Lipoic
Coenzyme Q
 
During this protocol, I experienced a load of increase in my symptoms. This is only a partial list of those symptoms but you get the picture. Lyme disease treatments are not for the faint of heart.
  1. Dizziness and severe vertigo 
  2. Heart Palpitations
  3. High Blood Pressure
  4. Throat Tightness
  5. Air Hunger
  6. Extreme Fatigue
  7. Pain in every joint of my body
  8. Extreme muscle pain with spasms
  9. Numbness of my right arm
  10. Constant Headache
  11. Extreme Brain Fog and trouble with clarity of thought & disorientation (Think of Alzheimer’s…yeah there you got it)
  12. Cognitive Dysfunction
  13. Bells Palsy
  14. Foot Drop
  15. loss of appetite
  16. Tremors
  17. Muscle twitches
  18. Eye pain and twitching
  19. Sunburned eyes from Doxycycline
  20. Tightness in chest (Feeling like an elephant sits on my chest day and night)
  21. Weird Heart Rhythms/Tachycardia
  22. Hot flashes
  23. Shallow Breathing
  24. Low Blood Pressure
  25. Severe back and hip pain
  26. inner ears hurting
  27. Feelings of impending death ( I have since learned this is neurological Lyme, A.K.A. Lyme Brain)
  28. Severe Esophageal Spasms
  29. Terrible GERD
  30. Severe Costochondritis (Inflamed Chest Wall)
  31. IBS
  32. Insomnia
  33. Nausea
  34. Groin Pain
  35. Severe Itching scalp and rash (Think Psoriasis here)…
  36. Swollen arthritic hands and knees…

And the list goes on and on, this is life with Lyme Disease. You cannot make extended plans. You cannot push through it. It is strong enough to take a bright, busy individual and stop them in their tracks. 

what-is-a-lyme-protocol

 
Now, I am NOT writing these symptoms for sympathy.
I just want to educate others about Lyme and what it can do to a body and to a life.
Most of these symptoms I have suffered from for many years. However, while taking PROTOCOL “A”, they were tripled in strength. This entailed a trip to the ER, Cardiologist, Internal Medicine Doc, and finally back to my Integrative Health/Lyme Doc. Let’s just say it is EXPENSIVE in more ways than one!
 
By day 8 of this first protocol, I have this  written in my journal...”I’m almost ready to give up pursuit of treatment. It is just too difficult. I cannot continue with this level of sickness.”
 
This from someone who waited almost 19 years to find out a cause for all the health problems they have had. I was ready to quite, almost before I began. That is the intensity of this treatment plan. It is HARD. It is scary at times.
lyme-prescription You must feel worse before you feel better

Lyme Prescription

The old line that …”You must feel worse before you feel better,” certainly applies here. Let’s just hope that it holds true.
 
By God’s grace I have been able to continue with treatments. I have been extremely sick this past week with a severe kidney infection. But, now I am back on track with my second protocol. Next time, I will write a little more of my experiences thus far with Lyme treatments. 
 
As far as improvements??
I would be hard pressed to find any right now. I have had a few good days mixed in with all the bad.
I had a really good trip away with my family a few weeks ago. Although the fatigue was bad the whole time, I think there was improvement in my pain levels. But, that was the last week of an 8 week protocol. So almost 8 weeks in to see a few good days. But, I am hopeful to see more and more good days in the near future. I am pressing on.

To read more about my journey to diagnosis, you can read here: My Lyme Story Part I. and My Lyme Story Part 2

 
 
 

 


7 Responses to Beginning Chronic Lyme Disease Treatments How It Changed My Life

  1. Susan says:

    Valerie, I am so sorry to read of your difficulties with Lyme Disease. I know someone else who is going through this right now. He is young, too. Oh my goodness, I sure do wish the BEST for you. Sincerely, Susan

  2. Valerie says:

    Dear Susan, Thank you so much. I am hopeful that much better days are ahead. Please feel free to share my blog with your friend who is going through treatment for Lyme. I love hearing others stories and hearing how their treatment is going. This is a long and complicated road, friends are always a good thing.
    Blessings,Valerie

  3. Lynn Hasty says:

    Valerie!! Oh my goodness. I am overwhelmed just reading it. I am so sorry. Hoping and praying this works well. Years ago I had a tick bite, a 3/4 bull's eye rash and horrible pain. I was treated immediately, and thank goodness my doctor was willing to do so. So many doctors say Lyme does not exist in our area but I have immunoglobulin blood results to show I had the bacteria for sure. I guess I should be thankful for early and severe pain that took me to the doctor. I know two other people now who are dealing with long term Lyme disease. Thinking of you and love you! Lynn

  4. Jenny says:

    Hi! Thank you for posting this! I hope you are still seeing improvements. I can tell from the protocols that we see the same doctor.
    I’m not just starting treatment, I refused to do everything at once, it seemed too dangerous with such an intensive program.
    I’ve had herxes that were so bad (prior to treatment) that caused me nerve damage, heart/breathing difficulties (ER) visits, kidney infection and incredibly severe neck/brain stiffness and pressure. I actually think those herxes caused me permanent damage and for this disease to become worse.

    So naturally, I was very worried that a doctor would actually tell a patient to start ALL OF THESE THINGS at once! Especially since some people have allergic reactions as well and you would never know what caused the allergy.

    What are your thoughts on this? I’d love to discuss more privately if you wanted to? It would be great to know someone doing the same protocol!

    • ValerieB says:

      Hi Jenny,
      I am so glad that you left a comment! I have been in Lyme treatments for almost a year and I am still just as sick as when I began them. I wish I could say that I have seen improvement, but, I have watched my health decline even more so. I agree with you, when I first began this protocol, I did not know anything at all about Lyme disease.

      I became so sick that I had ER visits due to heart and breathing problems. I also had several allergic reactions to antibiotics and even a few of the herbals. I am not a doctor, but I came to the conclusion myself that adding in bits and pieces of the protocol one at a time was the best way for me to approach it. I am no longer taking antibiotics as I have such violent reactions to so many of them. I just finished the Des Bio Babesia protocol and I had to stop at the last three vials because I felt like I was on my death bed. This is serious stuff! I would LOVE to talk further via email if you like! My contact email is at the top of my home page under the contact me tab. Wishing you health and healing. I look forward to chatting with you some more. I try not to mention my doctor publicly as I want to protect him, he is my life line right now. xo Valerie

  5. Holly says:

    Just a few days in to a Lyme Diagnosis and reading your blog scares me. I know I have no choice but to find a dr and get treated, but after 13+ years of being sick and it being blamed on the same things as yours was I just want to feel better! Prayers for relief for you! Life with Lyme is so hard!

    • ValerieB says:

      Dear Holly, You are right Lyme is very hard to live with! I’m sorry this post scared you. Unfortunately, this was written after i had just started treatments during which was a terribly sick time in my life. It eases with time and treatments. Take care and i wish you well with your treatments. Prayers for your healing and thank you for reading. Valerie

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