Lyme Disease, we meet again!

The picture posted here has nothing to do with my blog post. I just thought I'd share one of the latest paintings from my Etsy shop, LivingWordDecor. I made it for a friend's birthday and liked it so much that I decided to list it for sale!

So, as my post suggests, I am now in what I believe to be a relapse of Lyme disease. Darn, I was doing so well! As you may know from previous posts, my grandma lived with me and my husband, and I was her full-time caregiver. The past 6 months have brought unending amounts of emotional stress for me in regards to her and her health. She was hospitalized and put on hospice to die, only to recover. She developed dementia, which meant I lost a lot of sleep as she yelled out for me on countless nights. Despite my ability to maintain an exercise routine, I struggled with my diet and introduced a lot of sugar again. Then, my grandma did pass away at home on August 28, at the age of 99. I was with her by her bedside as she took her last breath.  I mention all this to paint a picture of what I feel led to my relapse. Maybe it had nothing to do with it, but to say I was stretched beyond my limits physically for quite some time now would be an understatement. I'm not complaining, I would do it all over again for her. But I do think it contributed to my immune system suffering a blow.  Maybe it's a total coincidence but, either way, it is what it is.

After my grandma was buried and all was said and done, I felt that crushing fatigue that is all too familiar. I blamed it on the grieving process and my body needing genuine rest that I had not previously had for a long time time. So I rested and went about with my normal routine. But week after week new symptoms would creep back in, with the migrating joint pain being the worst. I went for extensive blood work which, not surprisingly, showed everything was "normal". However, given my history and symptoms, I was started on a one month course of antibiotics. I added back in all of my herbal supplements and vitamins I was taking as well. 

Since starting the medications I feel 10x worse, which I remember happening last time. It's only confirmation to me that I'm on the right course with treatment. I'm trying not to let it get me down but it's so disappointing and discouraging. However, I hold on to my faith that I often write about, knowing the Lord is in control and has His purpose in this season. 

Lyme disease remission

I suppose this post is past due.  Just as the title says, I am officially in remission from Lyme disease! Praise God! At my last doctor's appointment, about a month ago, he declared me in remission and took me off the antibiotics (although I had already taken myself off them, more on that below). I am still supposed to be taking my herbal medicine (grapefruit seed extract, burbur, pinella, stevia, banderol & samento) but I'll be honest, I'm slacking in that area. I guess that's the part of me that just wants to be done with it all. I'm praying about it and seeing how the Lord leads me as to whether or not I should continue with all that stuff. 

Towards the end of my third month of treatment, I started having stomach issues at which point, my doctor added flagyl. I couldn't handle the flagyl so I took it upon myself to stop ALL antibiotics about 2 weeks shy of my doctor's appointment.  It was a gamble but I felt it was time.  I listened to my body and trusted the Lord. It only took about 24 hours after stopping the antibiotics for my stomach issues to resolve and to feel MUCH better so it was further confirmation that I made the right decision. 

Overall I would say it's been about 6 weeks since stopping the antibiotics and I'm still doing really well.  I'm just so thankful for having energy and not needing to sleep all day! I do still have days here and there where I'm tired and I take my afternoon nap but it's no where near (and I mean NO WHERE NEAR) how tired I used to feel!  My joint pain and muscle aches are gone, no more being off balance, no more daily nausea, no more insomnia, no more blood pressure issues (POTS syndrome), no light light/sound sensitivity, no more numbness/tingling/extremely cold hands & feet, etc., etc. I do still have my ocular flutter issue but honestly, I've learned to live with that.  I thank the Lord that it's not severe.  I supposed He is keeping that healing all to His miraculous self.  

I'm slowly getting back into working out, walking my dog most days and working on building back up my endurance. I've gotten into painting which I really enjoy and may share on here at some point in the future.  I'm just living life one day at a time and truly thankful for all that this experience has taught me.  On to the next season! 

Lyme treatment, Month 3

I got some excellent news from my doctor at my last Lyme follow up a few weeks ago! In a previous post I had mentioned that some of my blood work, specifically the comp protein C4A test, showed high levels of inflammation in my body (my blood level was 19,000 and anything over 2,000 is considered abnormal inflammation).  Well, my repeat blood work after 1 1/2 months on antibiotics showed my blood levels have gone down to 747!!!  I can honestly say I'm not surprised because I have had a dramatic increase in energy and overall feelings of better health this past month.  My joint pain is all but gone, my energy has increased 10 fold, my blood pressure issues are so much better and more.  Even our friends and family have been commenting on how much better I look, and more "chipper". :)  My vestibular issues of feeling off balance and dizzy have even improved, although still there somewhat but I'll take an improvement!  I do still have the ocular flutter condition and am hoping that resolves soon as well.  I'm not expecting a miracle because I know I'm in this for the long haul, but I know my God is capable of all things! 

With all that said, I'm going through a major "herx" like reaction today since starting my antibiotics again after a week long break from them. I just keep telling myself, it's more bacteria dying! I noticed last month that after each bad day, I felt SO MUCH BETTER the next day and I'm just hoping for more and more improvement. 

In addition to my other medications I'm taking that I listed in my last post, my doctor has added Samento & Banderol. They are herbal medicines that he said I may need to take for life. It all depends on how things go. We're hoping this will be my last month of antibiotics but we shall see.  Aside from the herbal medicines, we discussed my need to adhere to a healthy lifestyle long term to keep the Lyme bacteria in check.  I stopped the Resvoxitrol and Crypto-Plus for now due to side effects (crypto gave me the WORST dry mouth I ever experienced and the resvoxitrol made me dizzy). I may re-introduce the crypto at some point and try again, but not now. 

All of my test results regarding my low potassium came back normal and my postassium levels are now back to normal so that's no longer a potential issue! 

I hope this post encourages someone by showing that it is possible to get better from Lyme disease! While I'm thankful for my excellent doctor the Lord has blessed us with and the medicinal regime he put me on, I have to credit my better health to my faith. I thank the Lord Jesus that I have Him to walk me through this and I pray that you will know Him too!

Lyme treatment update

I've been through about a month and a half of treatment for my Lyme disease since I last posted so I thought I would give an update on how things are going. As far as feeling better, I can definitely see in some ways I am improving.  I have more energy on certain days than I have had in a long time and I can see my old self coming back! I still have days of feeling quite ill though, most likely from the treatment, and my neurological issues persist (the ocular flutter and dizziness/off balance). I know the central nervous system issues will take longer to resolve and I'm in this for the long haul!

As for my first month of treatment, I did very well on the antibiotic and herbal supplements. However, I couldn't seem to tolerate the Alpha Lipoic Acid, Glutathione and NAC so we discontinued those. My doctor thinks it may be an issue with sulfur intolerance but in any event, my progress doesn't seem to be hindered in any way by not taking those supplements. 

My second month of treatment started the day before Easter and we switched my antibiotic to Azithromycin and I have to say, it's not agreeing all that well with me but I'm plugging along. It certainly makes me nauseous (no vomiting though thankfully and it subsides within a few hours), and it also makes me dizzy.  It's hard to explain the dizziness.  I guess it's kind of like I just don't have my footing, but then I guess I'm used to that!  I'm still functioning well and dealing with it.

In addition to still taking all of the supplements I listed in my last post for my first month of treatment, my doctor added the following to my second month of treatment:

• Azithromycin
• Resvoxitrol (the jury is out on this one. I get extra "spacey" after taking it so I may not continue)
• Crypto-Plus
• Nystatin

Also, due to low levels:

• Vitamin D
• Vitamin A

In addition, I had some issues with low potassium in my recent blood work so we're exploring that as well and I will most likely be put on potassium supplementation at some point in the future. 

Overall I'm doing okay and like I already mentioned, I can see improvements in some ways. I definitely feel a lot more "off" though overall with this second month of treatment. I believe it's the new antibiotic so I'll be happy when that's done in 2 more weeks!

It's officially Lyme Disease!

My last two posts revolved around my new Lyme literate doctor giving me the clinical diagnosis of Lyme disease based on my symptoms, history and "indeterminate" Lyme tests. I'm here to share in this post that my Igenex test results are officially CDC guideline meeting positive!  I found out last night at my latest follow up and I can't even begin to describe the feeling. I was overcome with so many emotions and brought to tears. This has been a 2 year journey and all of my prayers crying out to the Lord "WHAT IS WRONG WITH ME????" have finally, without a shadow of a doubt, been answered.  Now that we know what's  (been) wrong, I can focus on my treatment. I'm not thrilled at the idea of starting antibiotics and lots of supplements and herbs, but it must be done.  So, here is my treatment plan for the next 30 days:

*I do not endorse or encourage the following treatment plan for anyone else who has, or thinks they have, Lyme disease.  This is specific to me.

• Minocycline 
• Stevia whole leaf extract 
• Grapefruit seed extract
• Transfer Factor Multi-Immune
• Probiotics

This treatment goes along with the following detox, which I wrote about in my last post:

• Alpha Lipoic Acid
• N-Acetyl Cysteine
• S-Acetyl Glutathione
• Burbur detox
• Pinella brain/nerve cleanse
• Magnesium

In addition, I am taking the following supplements due to my low levels:

• Vitamin C
• B-Minus (the Transfer Factor Multi-Immune has 5-Methyl folate & B12)

It's kind of an overwhelming list of things to take but I made out a timeline of when to take what each day and, I can do all things through Christ who strengthens me (Phil 4:13)!

It's Lyme Disease: Part 2

"They will have no fear of bad news;

their hearts are steadfast, trusting in the Lord" 
(Psalm 112:7)

I met with my Lyme doctor yesterday to get the results of all my recent blood work. While my latest Lyme test was indeterminate yet again, I did have some results that prove some type of chronic, raging infection is going on inside me. I tested positive for active infections of mono, herpes virus type 6 (no, not the sexually transmitted kind), brucella and chronic fatigue syndrome (based on the results of various IGM/IGG testing performed). The positive herpes result indicates immune system suppression and a test called comp protein C4A indicated very high levels of inflammation (anything over 2,000 is considered inflammatory and my levels were 19,000). Some other highlights: low testosterone, low VEGF (some experts believe this may be linked to mold), extremely low Vitamin C, low Vitamin D, B1 and high TSH (thyroid level). 

My doctor still believes this is Lyme Disease, noting that his other Lyme patients present with the same active infections. Something is causing all of this, that is undeniable. So, I'm going to have some more tests first to gather even more information before coming up with a treatment plan (Genova Ion Test, Igenex Lyme Test, Comprehensive Digestive Stool Analysis and maybe a repeat of Doctor's Data Urine Toxic Heavy Metals).

In the meantime, my doctor advised me to take the following supplements to begin a detox regime:

• Alpha-lipoic acid, 600mg 2x/day
• NAC 600mg 2x/day
• S-acetyl-glutathione 2 capsule, 2x/day
• Pinella, 10 drops 2x/day
• Burbur, 10 drops 2x/day
• Magnesium 300mg 2x/day
• Vitamin C 1000mg 2x/day

Also:

• Epsom Salt baths
• Infrared sauna use (if possible)
• Drink at least 60oz of water per day

I'll be the first to tell you that I'm tired of having to take supplements after what I went through last year.  For now we're starting with the magnesium, Vitamin C, Pinella and Burbur and praying about the rest (also searching for cheaper prices as supplements can be very expensive). I'm increasing my water intake and may try an Epsom salt bath but the sauna is out of the question. Even if we had the money to go out and buy one, which we don't, there's no room in the house to put one!  

I left the office last night feeling very overwhelmed, a little discouraged and somewhat scared.  I know these are normal feelings but I also know I have a sovereign God with everything under control. I was praying this morning that I would leave all of this in His hands and just continue to trust Him and He brought me the encouraging scripture from Psalms that I quoted above. I've been reading through a book on encouragement for caregivers and that was one of the scriptures she mentioned in my reading this morning.  That is so like God and His timing, knowing just what I needed to hear. So, I will have no fear of bad news as my heart remains steadfast, trusting in the Lord.  

It's Lyme Disease: Part 1

The Lord has been at work! When I last updated my blog in September, 2015, I wrote that my latest lyme's disease test came back negative and that I was going to give up my treatments and search for answers, and to leave it all in the Lord's hands. That is exactly what I had been doing. I honestly didn't think I'd be blogging again unless it was to announce that I have been healed.  

Imagine my surprise when my functional medicine doctor (who I stopped treating with in September, 2015), called my house in November, 2015, to let me know that she thought my last lyme's disease test might actually be positive.  It's a long story (and forgive me if I don't explain this clearly but I'm confused about these tests) but the bottom line is that, when reviewing my test again, she noticed "faint" positive band reactions to lyme's specific bacteria on my western blot.  Now it's technically not considered a "CDC" positive, but the fact of the matter is that my body seems to be producing antibodies against lyme's specific bacteria on the test (bands 23 & 39, as well as 41 which always comes back undeniably positive). The reason the lab won't consider it a positive is that my antibody reaction is not as strong as the control band on their test.  Is that ridiculous or what?  She suggested I find a lyme's literate doctor and after much research and prayer, I found a doctor pretty close to my area that I saw for the first time about 2 weeks ago. After looking at the test and going through my history of symptoms, he said it's a positive in his eyes.  He gave me the clinical diagnosis of lyme's disease but said he can't even write that in my chart since it's not a "CDC" positive. (My eyes are only now being opened to the mess and injustice of lyme's care and treatment in our health care system.)  Anyway, he sent me for a lot more blood work which I should have back in about 2-3 weeks. 

In addition to the call from my functional medicine doctor with this news, my pastor emailed me sometime in September telling me to look up a condition called "dysautonomia" (dysfunction of the autonomic nervous system).  He was watching a news segment about it and the symptoms reminded him of me. There is a form of dysautonomia called POTS syndrome (postural orthostatic tachycardia syndrome) which causes one to get very dizzy due to an increase in heart rate and/or a decrease in blood pressure when rising. After realizing I suffer from just about every symptom of POTS I read about, my husband and I confirmed that I do have this syndrome with an at home blood pressure test. Not only that, but the LLMD I saw who diagnosed me with lyme's, wrote in my chart that he suspects I have developed POTS syndrome as well. Imagine my surprise when doing some research and reading article after article that links lyme's disease to POTS syndrome.  This is due to the potential nature of lyme's disease to disrupt just about every system in your body, especially in someone like me who has gone 2 years without a diagnosis. 

So, the pieces of the puzzle are falling into place.  Actually, the puzzle may be complete! While I was giving up my search for answers, the Lord brought the answers to me. We continue to pray for His guidance and wisdom in my treatment after getting the results of my new blood work.

Signing off for now!

I wanted to post an update for those who have followed my experience taking the heavy metal detoxing regime with MetalloClear. I promised an update once I had the results of my re-test to let you know if MetalloClear did in fact work to lower my levels. I hope no one really had their hearts set on that because I'm here to inform my readers that I decided not to have my heavy metal levels retested. It was a prayerful decision and one I feel that is right for me. Yes, a part of me is curious if the MetalloClear actually worked, but I guess that will remain a mystery. I could go into all the reasons why I reached this decision, but the bottom line is that the Lord promised to heal me and it's time for me to get out of His way.

There is a Christian song I absolutely love right now. It's called "He Saw it All" by the Booth Brothers. When I heard these lyrics (specifically the underlined ones), it really touched my own personal situation with my health:

"So my friend if the troubles and burdens you carry are heavy and dragging you down; You’ve tried everything you can possibly think of and there’s no relief to be found; 

That very same Jesus that altered the future of a blind man, the deaf, and the lame, is still reaching out in your hour of trouble, one touch and you’re never the same."

I've literally tried everything I could possibly think of and while I do feel better overall for the most part, my main symptoms persist. I've been to my primary doctor, ENT's, a TMJ doctor, a neurologist, a cardiologist, have had numerous tests, MRI's, blood work and even did vestibular rehabilitation therapy for 6 months, with no results. I'll back up for a moment and say that heard back from my doctor regarding my most recent Lyme's test and again, that was negative. This is my 4th negative Lyme's test.  I did the heavy metal thing, do I really want to "try" that again? Do I want to live on 15 different supplements forever?  Um, no.  Do I want to "explore other possible options" as to why I'm sick, as my doctor put it?  No. What other options?  Where does it end??  It ends here with me giving it all up to the Lord, right where I should have laid it down in the first place.  

I don't regret seeing my functional medicine doctor as I do think it was important to get my gut in order with changing my diet, probiotics and raising some vitamin & mineral levels that were deficient.  Beyond that, it's just reaching into the wind. 

I suppose my next update with be my post to share with the world that the Lord finally healed me!  Until that time, I leave you with this incredible song of His healing power and love:

Lyme's Result and Update

My Lyme's tests came back as "not highly suspicious" for Lyme's Disease (whatever that means!), but my doctor is not yet convinced so I'm having more blood drawn next week to send to another lab. This will be my 4th Lyme's test, but I know it's not unheard of to take this much work to know for sure if you have it or not.  

As for my blood work, I still have low iron, iodine, Vitamin D and I just learned I have very low Vitamin A. I will be continuing my supplements as is for a few more months, with the addition of something for the low Vit A, with the plan to get me on a multi-vitamin at my follow up appointment in November.  

I plan to re-test my heavy metal levels next week but those results won't come back for at least 2-3 weeks so I will update again when I know whether or not the Metalloclear worked at all.