Happy New Year and Welcome Back Anemia

Happy 2015!

So I have now officially made it past the one year mark of being treated for Lyme and Bartonella.

I certainly have many many improvements as far as the Lyme symptoms go. However I am still battling the stuff inside my head. My brain is so sensitive to the bacteria still in there and every time I start taking Minocycline I herx something terrible that I have to keep backing off and slowly going back on again. I am on my 5th round of Mino.

It's hard to believe that for 6 years I was misdiagnosed and put through so many testings and physical therapy and then after all that finally diagnosed with Lyme and treated and in less than a year so many of those debilitating, painful issues are almost gone completely. Mostly my neck pain and the right arm numbness and weakness is gone. I can't believe that I was so bad before, I couldn't lift things with my right arm or write normal as my hand would shake and quiver and I couldn't hold on to a pen normal. I looked like I had MS or something like that. Mornings was so hard as I would slowly crawl out of bed, not able to stand straight for several minutes, my routine was always walk slowly down the hall, trying to straighten my body, walk on tip toes because the soles of my feet hurt terribly, body tremors and shaking was normal while trying to get out of bed. I am so happy that I don't do any of that anymore!! What a difference antibiotics have made!

However with treatment came some new symptoms as the bacteria is being aggravated inside me and the revealing of the co infection Bartonella and then in March of 2014 we found I was very anemic.

I did 3 months of iron supplements and in August my counts were all normal! Was so excited!

However the past few weeks I started noticing the fatigue and the metallic taste in my mouth and itchy body so I decided to go get my blood drawn to make sure I wasn't anemic again. My LLMD called that evening with the results and said I was back down again, not as bad as March, but since the last blood work on August I have lost a unit of blood.

He encouraged me to find a primary care physician in my area that would be supportive of my Lyme treatment to help trace this anemia issue that seems to be affecting me. He said absolutely it is possible that there could be the presence of the co infection babesia, which is known to eat hemoglobin and cause anemia, however before he goes that route he wants to rule out anything else that could be causing the anemia.

So I am currently waiting to hear back from a doctor that was recommended to me and see if she will take me on as a new patient and work with my LLMD.

I hope to have some more clear information on my anemia soon.

I just want to encourage those who are reading my blog to make it a point this year, if you haven't already, to watch the documentary below, Under Our Skin. I am anxiously waiting to view the sequel Emergence it's not free on Youtube just yet.
It's so important to educate ourselves about this disease, especially now as we are hearing of more and more people being diagnosed every day. Just in my circles I can't count how many folks I know that have come down with Lyme Disease. I have provided the video below but not sure if mobile devices can see it, so it is free on Youtube, just search Under Our Skin.

I'm Still Here and Still Fighting This Battle!

Wow so it's been awhile again. It's been wonderful forgetting that I have this blog so why am I here this morning so bright and early???

HERXING! AGHHHHHHHHHHH!!!

Okay not as bad as in the past but I am on day 6 of increasing my Minocycline from one 50mg a day to now 2 50mg twice daily. My brain pressure and headache are back as well as extreme hearing sensitivity. But this time I know it's a herx and so instead of crying because I feel so bad I am rejoicing because herxing means the little buggies are being killed in my head and it's just needing to get flushed out so I can stop herxing here. The fact that I herx is always a good sign that my meds are doing exactly what they should be doing.

So I applied TONS of Peppermint Oil yesterday and took it easy. The oil really soothes and helps me to relax. Will do the same today.

My next increase is Dec 10 where I will take 150mg a day of the Minocycline. On Christmas Day I will do the last increase to 200mg a day of Minocycline.

Other than the herxing my body feels incredible. My friend at church noticed that I have so much more energy and she is right! I have felt incredible, I wake up with no pain, no tremors, no stiff neck or joints, no more knee pain, my arm and hands are normal with no tingling or numbing or any pain!  Amazing after 6 years of suffering!

God is so good to have lead us to a great doctor who diagnosed me correctly and has me on the correct treatment. The Bartonella truly has been harder to eradicate than the Lyme. And since it's in my brain it seems worse because it affects vision, hearing, overall head feelings. But I haven't struggled with slurring speech, forgetting sentences, whooshing, brain fog...I do have dizzy spells still but nothing like it used to be.

As far as current protocol, it looks like this:

Cefedenir twice daily
Clarithromicin 1 tablet cut into half, take half tablet twice daily
Minocycline twice daily
Pantaprozole one tablet in the morning
Probiotics in the afternoon.

Every night at bedtime I rub Thieves Oil to the bottom of my feet and around my neck.

So I am still here and still in this battle however I can truly say with all my heart I am encouraged as I am seeing the light at the end of this long dark tunnel I have been in for so many years! I know I still have awhile yet to go, my LLMD said I would have to be 6 months of absolutely symptom free before he would slowly wean me off any medications. So not there yet, but sure am closer!

I think of where I was just 10 months ago and I cringe thinking how sick I was, how much pain I was in and so much herxing going on I thought I wanted to just curl up and shrivel away. I do like to go back and re-read my Daily Journal here as it reminds me of where I once was and encourages me to see how much I have improved.

Sometimes I feel awful for others that I know with this same disease who don't seem to get any better with treatments. I don't understand why it works for me, even though it has been a tough journey, but others they never seem to get better. I even had to leave some of the Christian Lyme Support Groups I belonged too as I felt like I couldn't share my good news of getting better because so many are not getting better after, some folks, 10-20 years!

I am truly grateful to the Lord for getting me through this one step at a time. For directing us to the right doctor and for giving me such a wonderful, supportive family. My husband is so compassionate and so loving. I couldn't have endured so much without his constant care. My children are incredible. On my bad days they take over with cooking and cleaning. And my church family are always praying for me. I am truly truly blessed.

As I close this post, I am reminded of a beautiful sermon by one of my favorite preachers, CH Spurgeon called Beloved, yet Afflicted: Here's the ending of that sermon:

If Jesus loves you, and you are sick, let all the world see how you glorify God in your sickness. Let friends and nurses see how the beloved of the Lord are cheered and comforted by him. Let your holy resignation astonish them, and set them admiring your Beloved, who is so gracious to you that he makes you happy in pain, and joyful at the gates of the grave. If your religion is worth anything it ought to support you now, and it will compel unbelievers to see that he whom the Lord loveth is in better case when he is sick than the ungodly when full of health and vigour.If you do not know that Jesus loves you, you lack the brightest star that can cheer the night of sickness. I hope you will not die as you now are, and pass into another world without enjoying the love of Jesus: that would be a terrible calamity indeed. Seek his face at once, and it may be that your present sickness is a part of the way of love by which Jesus would bring you to himself. Lord, heal all these sick ones in soul and in body. Amen.

Looking unto Jesus, the Author and Finisher of our faith.

Donna

My precious new granddaughter Sierra

No More Cipro For Me!

My LLMD had started me on the new regime of Cefdinir and Ciproflaxin to treat the Bartonella in my brain. It has proven to be very effective as all my brain weirdness has subsided and I only had been experiencing slight hearing sensitivity.

However after being on it for almost a month I started noticing I was having flu like body aches. A symptom I do not wish to have again as that was one of my very first obvious Lyme symptoms. Since this new treatment was more focused on killing Bartonella I was concerned that my Lyme was returning again. So I put a call into my LLMD.

After hearing my concerns he said before we think the Lyme is strengthening let's take you off the Cipro as muscle pain and tendon pain is one of the rare side effects and since I have been one of his patients who tends to be sensitive to medications he wanted to test his suspicions that it was the med and not the Lyme. In the mean time he said I must always be on 3 different antibiotics so he put me back on Clarithromicin.

As soon as I was off the Cipro, I caught a terrible head cold/flu thing that gave me chills and fever and body aches and bronchitis. So it was very difficult to figure out if the body aches were in fact leaving. But now that I am over that I definitely do not have the body aches so that tells me once again my brilliant LLMD knew what he was talking about.

Since stopping the Cipro though my hearing sensitivity seems to be worse. I go in on Nov 12th to see my LLMD so I will ask him about it.

So another interesting lesson on the antibiotics!

New Bartonella Treatment and Neuropathy Medications

So after suffering for some time with extreme hearing sensitivities and brain weirdness which is common neuropathy issues, (dizzy, buzzing, zapping, Bells Palsy, facial weakness, eye pain, back of the ear pain, weakness in my right arm, heart palpitations, chest and rib pains, watery eye, droopy face, lightheaded, whooshy sensations, slow speech, slurring, emotional wreck with crying spells)

I went to see my LLMD and after reviewing everything he decided it was time to change up my treatment.

He said over the past 4 months he has been researching Bartonella and also he met with other Lyme specialists and he has some concerns about Rifampin, which is what he was treating my bartonella with.

So now my new medications are Cipro, Cefdanier (Sp?) and he has me on a neuropathy med called Gabapetin. I am still on Plaquenil too.

As of right now he said I am the only patient of his on this new protocol. Don't I feel special...haha..

So I am still battling Bartonella. Fun fun...I was on Mino and Rifampin for almost 4 months and it made me feel so much better but then I did the stupid thing, I stopped taking everything cold turkey, but within 10 days my brain stuff came back, slowly, but by August I was in full force and back on meds. He did say 14 days is usually how long it takes to get symptoms back if it's not dead yet. He was right.

So once again I am back on treatment and this time I will not go off. And this is going to take time. I have been on treatment for almost a year. My Lyme symptoms are virtually non existent..the neck pain, joint pains, weak arm and wrists, headaches, arthritis are 98% gone!

So once again I covet your prayers for this new medication, I don't want to herx or have an allergic reaction.

Discouraged and yet hopeful still.....Jesus my Hope!

It's so difficult living with an invisible disease. Day after day I live with symptoms not noticeable to most folks, mostly my hearing sensitivity issues and my brain weirdness as I call it. I'm exhausted and very emotional, crying episodes are more frequent now.

For weeks now I have been experiencing the dizziness, brain zapping, vibrating, buzzy sensations and facial numbness and slight Bells Palsy like symptoms of drooping feeling and my eyes feeling like so much pressure is on them that they are literally drooping closed. Slurred speech and the great efforts to speak sometimes. I feel like my brain has to work so hard to just get sentences out. I gasp for a breathe after I speak so many times as I feel over exerted. So strange these things.

I was doing so well just weeks prior that I am so discouraged that it all came back, full force in my brain this time. 

Yet I am still hopeful because I know the Lord provided us with a LLMD that knows what he's doing and he understands where I am at. And he really genuinely cares for me.

I called yesterday to let him know whats been going on since he started me back on Mino and Rifampin.  His instructions were to immediately get off Mino and Rifampin and start back on Lyme treatment of Plaquenil and Amox and Clarithromycin.  And he wants me to come in ASAP, not wait till my September 25th appointment. So I go in this Tuesday Aug 26th.

It's been almost a year since my diagnosis of Lyme Disease, and 10 months of abx treatments. Will this end? Will I be normal ever again? I just read this sad story of a lady who suffered and took her own life. Broke my heart! Her worst symptom is what mine is, hyperacusis, hearing sensitivity.

I am so glad I know my life here on this earth is temporal. I do look forward to a perfect body, no more Lyme. I hold to this hope. This is my only Hope. Jesus. I may never be 100% freed from this disease and I really am ok with it. I wish it weren't so, but the more I am sick, the longer I am sick, I am so grateful for my spiritual healing, that I am saved and redeemed by the Blood of the Lamb. I cant imagine going through this without the Hope of eternal Life through Jesus Christ. Knowing that this world is not my home, I have such greater joy to look forward too. Keeping my eyes fixed on the knowledge of my eternal home in glory, forever with my Savior.  

If you suffer from this disease or any other chronic illness and you do not know Christ you will be discouraged and feel it's hopeless. Turn to Christ! There is no hope without Christ! Your body may never be healed here on this earth. But more scary is if your soul would not be healed from the sickness of sin and death. Please please, I beg you, take the time to consider your standing with God Almighty. Please visit this website and read with an open heart. 

Back on Minocycline..Fighting Bartonella!

Well I was doing so well and still have no joint pains and headaches but I started getting more brain weirdness, buzzy, zapping, whooshing sensations, dizzy spells and lightheadedness...then the hearing sensitivity returned. I thought maybe this was just residual effects of die offs and candida stuff.

I also had not called my LLMD and spoke to him since I had quit cold turkey the antibiotics, so this morning I put the call in and waited to hear from him, thinking the entire time I AM IN SO MUCH TROUBLE!

But once again my LLMD proves to be the most compassionate, understanding soul. He completely understood my predicament with the financial strain of getting my monthly medications and all of Kayla's bills that keep flying in.

After discussing with him the improvements and then letting him know that I was having the brain weirdness, he said he is completely sure that I am still battling Bartonella as Bartonella attacks the neuro pathways and your central nervous system. The buzzing, zappy, brain fog and hearing sensitivity is all the bacteria still attacking my CNS.

The good news he was delighted to hear was my hemoglobin went from a low 8 to a whopping 13.5! I gained 5 units of blood which is remarkable!

However his concern is if I am not treating the Bartonella, it will once again go and feast on my red blood cells and I will go right back down to that low hemoglobin number.  And I do not want to be there again! I felt horrible!

So for now he said I can take one 100mg of the Mino a day, and a Rifampin every other day to help keep costs down. He said anything, even this low dosage is better than nothing as we still need to keep fighting this bacteria.

He's officially taken the focus off of Lyme Disease and now we are battling Bartonella which I have read is WORSE than Lyme! UGH!

"Babesia and Bartonella are not little addendums to Lyme disease, but are often far more serious than Lyme disease. Any physician who is not well-versed in these two killing infections perhaps should not be considered competent enough to treat patients with flea and tick infections. These infections do not circle around planet “Lyme” like small moons, instead, they are their own huge planets that cause massive consequences to the human body." Dr. James Schaller M.D.

So here I go, back on Mino and Rifampin, hoping to get rid of these symptoms once and for all! At least I am doing much better in many other ways so for this I rejoice and praise God for always giving us answers and directing us when we asked Him for direction. I found this website too that has info about other ways to treat Bart as Bart can be tricky to kill with abx alone.

Psalm 34:4

"I sought the Lord, and He answered me and delivered me from all my fears."

Stopped All Antibiotics! Candida Treatment Time!

What a scary time when I realized I had to make this hard decision.  To be completely honest much of my decision is financial. With Kayla's broken ankle and all the surgery etc the bills are flooding in and it's been overwhelming to say the least. We have no health insurance so you can imagine hat our bills are looking like, currently in the $20.000's!

Knowing we have to keep up with those bills caused me to realize the best thing to give up is the monthly prescription costs.

I have been doing re markedly well and I was able to take over a month of the Minocycline with no herxing at all! Third round was a breeze. So I believe with months of Rifampin and then 3 rounds of Mino, we have knocked out the Bartonella that was making me so sick from Feb.

As of right now I have no Lyme symptoms, no reactions to stopping all abx cold turkey. Today is day 5 of no abx.

I am treating candida overgrowth which I am convinced I have as I have a very bloated, pregnant looking belly and since starting abx I have gained 20 pounds. Candida overgrowth causes the SAME symptoms of Lyme so some of my nightly aches and pains I believe are candida and not Lyme. So no sugar or carbs right now and using powerful probiotics from Natures Sunshine. My eldest son and his wife are distributors
Here's a great place to read about candida overgrowth and it's symptoms.

I still am using my Thieves essential oil every night. I plan on adding oregano and Basil to my natural Lyme treatment when money allows.

So that's my latest update. I will continue to update as I live without abx for the first time in 10 months.  If you also have stopped abx please comment below your story so others contemplating this route can have other's stories to make their decisions. This certainly wasn't an easy decision for me, but 10 months of abx is a long time and I have had much relief from symptoms and like I said, I am not convinced any joint pains and other Lyme-ish symptoms are still Lyme, but candida at this point. Only time will tell and so my journey continues......to be continued......