My Visit With Infectious Disease MD

My first appointment to an infectious disease doctor was not enlightening. It was extremely uneventful. Aside from him shaking his head in awe as he stated that I shouldn't have been treated for more than the standard 14 days, seeing as that Lyme is easy to treat and "even cases where the Central Nervous System is involved only require 28 days of treatment". I was pretty disappointed in that statement. He also made sure to tell me that I look great so why am I there? After all if someone looks good they can't POSSIBLY feel terrible, can they? Only 80% of common illnesses present underneath the skin! How dare I look good on a work day while trying to make a living and taking time out of my pay to go sit in his office for two hours just to be told I look good. He then ordered some blood work and agreed that maybe there is a complex array of other things going on in my body keeping me from feeling 'well'. He mentioned IVIG, which really interests me since the last time I was mentioned that was upon seeing a specialist in Vermont while in a wheelchair. He said it is a substitute for some people who can't fight illness with their own immunity and might really help in my case. He ordered some blood work to check on my levels for that, and to retest me for Lyme even though he claims "once it tests positive it always tests positive". I'm sure he will write it off as a false negative when it comes back negative like it always has. Aside from the IVIG treatment possibility, he did not recommend or even hint on anything else that might be going on. Apparently there wasn't too much to be concerned about to him since other doctors are managing my other problems. I'm sure he thinks those other problems are not related to each other at all. I even made sure to specify to him that when we say "Lyme Disease" we are referring to the chronic long standing and difficult to treat co-infections as well, which he couldn't fathom being just a clinical diagnosis. This young doctor was the perfect text book of example of a physician playing by the rules who can't bare to think outside of the box. Not the 'know it all' Dr. House type that I was hoping for. At this point I often feel it would be better even to find something else as the cause for all my problems, instead of my Lyme Diagnosis. It feels as if I will be struggling with these symptoms forever.

New treatment plan, Doxycycline and Metronidazole

After suffering for years and years with different types of treatment plans my doctor and I stumbled across a new one that works really well for me. I'm taking Doxy at a smaller dose to not upset my stomach, and Metronidazole which treats other forms of bacteria such as coinfections. With this combination I'm feeling a decrease in almost all of my symptoms.

Completely unrelated, my heart symptoms of palpitations, fast heart rate, dizziness, etc. became worse for the first time in months. I went through a Holter-monitor test, another Echo-cardiogram, and a physical to try and diagnose the source. After finding nothing, it was decided that my Bartonella has now moved into my heart and is running wild creating symptoms that can't be caught on film with no rhyme or reason to them. I feel the aching pain in my heart, my sternum, and my collarbones still. Sometimes I run my hand down my sternum and feel the permanent ridges protruding from a bone that was one sawed in half. I feel the claviculae joint pop and crunch as my collarbones shift around. I even feel a knot at the top of my sternal incision scar that still had bit faded yet and remains a bright red bump. I perform scar therapy on all of my scars by massaging them and applying a silicone liquid that's supposed to soothe them away. Most of my scars are already disappearing, fading away into small white lines. I know the knot will subside too in time. My mother's research says maybe 2 years, but it will one day be barely visible. I see actors on my favorite shows with faint white lines down there middle of their chest and feel so much more relatable to them, like we have so much in common. Maybe one day even my significant other would be able to understand what I've been through from first hand experience, though I do not wish for that.

These battle scars will be reminders of where I came from but mostly what I can overcome as I push myself to future goals. I pray that my Lyme symptoms stay under wraps as I take the next journey forward in my life. I know stress can make it come back full force once again, and I know exercise and diet may be keys to successful future treatments.
Tonight I remember where I was at the beginning of the year, when I signed up for my first gym membership and how I thought the year would go. I never knew it would have turned into this, and I haven't returned to the gym because of my pain and undiagnosed continuous heart symptoms, but I remember where I was so I know how far I've come and what is left for me to still experience.

My Current Condition, 7 Weeks Post Op

After seven weeks I can truly say you wouldn't know from looking at me that I had open heart surgery. I walk straight, stretch often, drive myself to therapy where I get on the stationary bike, and I can do small tasks like vacuum and brush the horse lightly. I do not have the stamina that I will one day have after months of therapy and building myself up to where I was prior to the open heart procedure, but the scar has flattened and still fades giving me hope. Another thing improving is that I have tapered down to my final dose of Prednisone for the next week, and then I will only have two weeks left of the side effects from that medication. It caused major emotional setbacks, weight gain, and worsened Lyme and coinfection symptoms. Of course, it is difficult to tell what is a worsened Lyme symptom with the steroids and no treatment, or what is medication side effects. What I know for sure is I can't even list how many symptoms have swamped me again. The major problems I struggle with now are massive depression and anxiety (enough that even my Lyme specialist changed me from Ativan to Klonipin at my check up appointment yesterday), nausea, joint and muscle pain that can leave me unable to move, muscle spasms, light sensitivity and even blurred vision, extreme short term memory loss, hearing problems, dizziness and fatigue, and concentration loss. I feel a lot of these symptoms like I had struggled with for the last few years when the Lyme and it's coinfections were worsened. My Lyme specialist heard me out and ordered antibiotics for me to take if I end up needing them in June even though my insurance will be ending them. This makes it so that I have them before the insurance runs out, in preparation for the inevitable evil. He also ordered a slue of blood tests to rule out any other problems that we could be missing by blaming everything on Lyme for the past few years. I want to make sure there is not something that is being missed, keeping me from getting better. I feel at the end of my rope, and the stress is affecting my friendships and general outlook on life. I just wish I could curl up in a ball and disappear most of the time. Even when some things look promising, like a generous donation from a loving angel to help repair my car, I still find myself questioning why I am in such a predicament. I struggle with keeping optimistic when everything around me seems to be collapsing. What will I do if something goes wrong with my heart recovery after my insurance is gone? Why has someone like me been stomped on by the system that was made to help people like me? Why does no program have the ability to help me, and when will things start looking up? How come no medicine ever works enough to make me cured, and will I ever be cured? These questions circle my brain day in and out, and I feel as if nobody could understand the emotional pain I'm in. I find myself not wanting to talk to anybody when the end of the day comes, and I just want to hide in my bed. When the sun rises I struggle to want to move from bed to head to rehab, where I will be walking and biking and questioning how I ever enjoyed exercise. I used to feel empowered and strong trying to exercise alongside people at the gym, and encouraged to improve myself. I can't help but struggle with this depression and feel so alone and so beaten. I know I have the best support system in the world, with a man that I love, and my mother's overflowing support. I wish that could erase any negative thoughts or feelings I have, but I find myself feeling empty and distant. I want to be quiet and observant when in a public environment, instead of outgoing and involved like usual. I hope this will pass, and I go into my disability determination appointment tomorrow knowing that he will see into this pain I'm in and understand the severity of my condition.

Result of the Cardiologist Appointment

I had my Cardiologist appointment yesterday and I must say, I had the best appointment possible. The specialist was incredibly compassionate and understanding, hearing me out about the fact I suffer from Lyme Disease and have been on and off of treatment for 5 years and on IV antibiotics currently, even acknowledging the port and saying the two magical words: 'I understand'. He seemed to have a few different ideas of my prognosis, and wanted to run a few more tests to see what is going on. He believed me, listened, explained everything fully, and held eye contact. These are difficult traits to have with a consultation appointment nowadays with the medical field feeling entitled and sidetracked, calling every patient a drug seeker or hypochondriac. However Dr. Lootens of Concord Cardiology was not the cookie cutter physician. He was amazing, and I'm excited to work with him on figuring out my high heart rate and heart palpitations. Currently I had a 24 hour Holter monitor on to record my heart rhythm through everyday activities, which I return in a few hours and wait a week for the results. Next Wednesday morning I have a Echo Cardiogram where they will ultrasound the structure of my heart and cancel out the possibility of physical defects. These two tests should answer a lot of questions, and if needed we can try to push the insurance company to cover the new 2 week Zio monitor, a silicome patch on the chest that is waterproof and adhered on, measuring the heart and blood pressure for two weeks straight to give a better picture of the possible problems. The hope is to find something that does not require a long term treatment. There must be something going on, as I have suffered palpitations for almost 2 years and my heart rate can reach 200 bpm with a simple moderately inclined walk at the gym in a matter of 3 minutes. Hopefully this is just the result of genetics, high heart rate runs in the females for 3 generations. Possibly the cause of not being in shape. For now I wear the monitor and hope for answers, waiting for the return to the office on the 19th.

Social Security with Lyme Disease/Related Disability

One of the biggest questions many Lyme sufferers or people with coinfections have is what to do now that they can't work, or haven't been working. I have not been able to answer much of these questions, or give further information. Recently someone emailed be an article to help give insight on what help is out there, and how to go about receiving that help, as posted below:

"Applying for Disability Benefits with Lyme Disease

Although Lyme disease can be quite debilitating, its affects on each patient are different. Additionally, because the symptoms of the condition can be quite pronounced at times, and go into relatively long periods of remission, it can be challenging to receive qualify for disability benefits through the Social Security Administration (SSA) for this condition.

Though difficult, it is possible to prove disability and get the benefits you need, if your Lyme disease is so severe that it prevents gainful employment for a period of 12 months or more or is expected to do so, given the extent and type of symptoms you experience.

SSA Disability Programs

The SSA has two disability programs for which you can potentially qualify with Lyme disease. The first, SSDI, or Social Security Disability Insurance, is a program designed for disabled workers. SSI, or Supplemental Security Income, is the second program, and it is a need-based benefits program designed to provide benefits to disabled workers and/or their dependents.

Basic Eligibility

To be eligible for SSDI and/or SSI, you must meet the basic medical requirements for proving disability. These include:

• Having a medical condition that can be substantiated through standard medical means, meaning it must be proven with significant medical documentation and that documentation must satisfy the SSA’s evidence requirements.

• Suffering from a disability that has been, or is reasonably expected to be, present for at least 12 months or which is terminal.

• Your condition must prevent you from maintaining gainful employment in any job for which you would otherwise be qualified.

The previously listed basic eligibility requirements satisfy the medical portion of eligibility for SSDI and SSI; however, each program also has technical eligibility requirements.

• For SSDI, you must have work credits from your previous employment, and must also not earn more than the SGA, or substantial gainful activity, threshold in monthly earnings from employment. You can learn more about SSDI here: http://www.disability-benefits-help.org/ssdi/qualify-for-ssdi

• For SSI, you must have very limited income and other financial resources with which to support yourself, as this is a need-based program. You can learn more about SSI here: http://www.disability-benefits-help.org/content/about-ssi

Qualifying with Lyme Disease

To meet the SSA’s medical eligibility requirements, you must fully document the affects of your Lyme disease on your ability to work and your everyday abilities to complete tasks in your personal life as well. While the SSA has no dedicated listing for the condition under which you can qualify, there are multiple listings in the SSA’s Blue Book (http://www.ssa.gov/disability/professionals/bluebook/) that may be applicable to your claim. This is because Lyme disease can have severe affects on multiple body systems.

To qualify with this condition, you must:

·         match a listed condition in terms of severity level

OR

·         document that your residual functional capacity (RFC) is so limited that you qualify under a medical vocational allowance (MVA)

The following conditions may be ones that your Lyme disease application can match, provided you have the appropriate medical documentation to satisfy the SSA’s evidence requirements:

·         Musculoskeletal System – Section 1.00

·         Cardiovascular System – Section 4.00

·         Mental Disorders – Section 12.00

·         Inflammatory Arthritis – Section 14.09

It is also important to note that the SSA will take all of your symptoms under consideration when determining if you meet the eligibility requirements for receiving Social Security Disability (SSD). In other words, if your symptoms fall under more than one of these listings, the SSA will consider the medical evidence you provide in comparison to multiple listings.

Starting Your Application and Getting Help with Your Claim

If you are ready to begin your application, you have two options for getting started:

• visit the SSA’s website, to start your application immediately,

OR

• contact your local SSA office, to schedule an in person interview during which your application will be completed.

While it is possible to receive disability benefits for Lyme disease, it can take a long time for your application to be approved. You may have to go through more than just one round of reviews before the SSA finds you eligible, and you may also have to appear at an appeal hearing, if your claim is denied more than once.

Seeking the help of a Social Security Disability advocate or attorney before filing your claim is advisable with Lyme disease. However, an advocate or lawyer can assist you at any stage in the application and review processes as well, and can potentially increase your chances of being approved for benefits."

Article by Ram Meyyappan
Social Security Disability Help
www.disability-benefits-help.org/blog

Hopefully that helped somewhat, though it is a mindful to read. I put this out there as a reference for many people starting to navigate the hoops of this illness and survive even when the going has gotten rough. 

Minocycline, Plaquenil, Worse Symptoms

A few weeks ago my doctor's appointment was enlightening. We were happy with my progress, discussing removing the PICC line soon, and working on getting me back into school. We switched the  Zithromax to Minocin and Plaquenil to better combat my neurological symptoms, and I regret it. I now have suffered such bad symptoms, that I couldn't tell what was causing the problems. I had my first cycle since being off hormone medications, which sparks the Lyme up and messes up my body; the medicine change would could be either side effects, herx reaction, or just me backsliding; an increased stress level on the home front and personal side of things; and then the added challenge of trying to get me back into school work and bible studies all over again. Now, I spend all day every day feeling like the room is collapsing in on me with this weird dizzy vertigo type feeling. My eyes are acting up and so light sensitive again it is actually quite sad. My sound sensitivity has gone back up to the point where phone conversations are a challenge. Within the past week I had a migraine almost every day, managed with lots of mid day naps, a dark room, Tylenol, caffeine, loads of water, and ear plugs. After a nap and some medications it would usually reduce to a manageable point where I could sit up, talk, or eat lightly, but was still nauseas, taking a combination of nausea medicines, and still too dizzy to make it farther than the bathroom. Yesterday I did not have a migraine, I had other problems and stresses to manage. I have not had one yet but I'm trying to update all my fellow Lyme sufferers before it hits and I'm out cold for the rest of the day and night. I stopped the Minocycline, which was the second one I had started right before the migraines hit, and I'm waiting to see if my brain clears up a bit in the next few days. I have stayed on the Plaquenil the entire time so I can better see what is causing my symptoms to be worse. Small steps of change. I plan to be back on my gluten free casein free caffeine free diet as soon as this calms down and my progress changes direction again.

Post Surgery Recovery, Lyme Symptoms After Clindamycin

The count up is in full swing. Today is 12 days post surgery, and this post will be a full blown analysis of my symptoms. Too many people have asked how the surgery has affected my Lyme symptoms and vice versa, and I'd like to quench everyone's thirst for more answers. Surgery is a traumatic experience for the body, nervous system and immune system. There's many characteristics of me being someone with auto immune dysfunction that affect my recovery. First of all, I'm on an IV medication that's trying to treat my symptoms of fatigue, depression, anxiety, joint pain, muscle spasms and weakness, headaches, hot and cold flashes/sweats, insomnia, light and sound sensitivity, and so much more. Charting my progression of those symptoms is more difficult over the course of my first month of this treatment when you are adding digestion irritation from pain killers, fatigue from the narcotics and trauma induced with surgery, and of course worsened headaches from stomach pain, fatigue, narcotics, etc. It's a snowball effect caused by the initial problem, the tick borne illnesses! My gall bladder probably worked fine before Lyme and Bartonella's treatment of Rocephin through IV clogged it up. I may have never needed surgery to remove it if I hadn't introduced Rocephin due to the Lyme. What a cycle.

Another thing to keep in mind is that I have experienced prolonged adhesive sensitivity since the IV treatment. I could have had it sooner and just not noticed until my skin was red and itchy from the IV dressing. I have since used an IV 3000 dressing to reduce the allergy and been fine in the Picc Line area. However, the band aids and dressings for the stomach incisions caused worse pain and irritation than the incision itself did. What a mess! Below is a picture of the four incisions, three of them surrounded by bright red almost welted skin where the adhesive touched. As of today I decided to not use any band aids to reduce those problems. In a week I'll get another picture of my stomach and how the scars are coming along.

On top of all that I have been found to scar hypertrophically, an uncommon way that the body can scar for some people where the skin over the scar is raised and red and firm unless manually softened with therapy and vitamin E based applications. Hyper trophic scars are not common for everyone, but are similar to scar tissue build up that can cause nerve pain and experienced by many Lyme patients whose immune system is affected. (http://en.wikipedia.org/wiki/Hypertrophic_scar)

Last but certainly not least is the risk after surgery of infection that can be fatal, thanks to the low immune system Lyme gives somebody. I was concerned about this but seeing as they glued my incision closed and I didn't get the dressing wet enough to change it every day, It lessened exposure to the air and I have been able to keep the stomach clean and dry. There is a little bruising near my belly button but it's looking good and smooth. As far as the Bartonella and Lyme symptoms go, I slept literally all day yesterday and caught up on much needed rest from the past two weeks of stress on my body. Today I am more energized and appreciating my sublingual b-12 in 5,000 mg tabs That significantly increase my general well feeling. I have rested, made sure to keep up with my medicines, and taken magnesium and b12 daily. Those are the only two natural supplements that I notice a difference with. I sleep better, wake up happier, have more energy, fight less depression, and feel lighter. On the Clindamycin, I have recognized a noticeably clearer ability to process, think, and concentrate. I am still working on the memory and motivation, but that will take time and rest. I have started reading more to wake my brain back up and we are looking into a tutor to generalize my needs and get my education back on track. We are also probably applying to disability since I can't work and do school and get better. I'm just not a super woman yet.

Hyperhidrosis

'Hyperhidrosis' is defined as the condition of abnormally increased perspiration, more so than is needed for the regulation of body temperature. For about 10 years, since I was just a little girl, half of the back of my left hand would on and off drip sweat. I'm not talking drops, I'm talking soak through my sheets, drench paper towels, gather into a stream on the back of my hand type sweat. It has only been on the back of one hand, and I never understood it. I do not at this point believe it is connected to the Lyme, but I think the supposed Babesia with symptoms of night sweats and endocrine problems, could be worsening it in the past five years. I went to a dermatologist when I was in fourth grade, but he was not sure what it was and had no solution for me. Deodorants have worsened it instead of helping, and I never knew, this entire time, what was going on or that there was a name for it. Every doctor I had seen said it was the weirdest thing they had encountered and had no help for me. They said I was the only patient they knew with such a problem. Recently, my PCP told me I had reversed sweat glands on my left hand, so they were on the back instead of the palm. My right hand is fine, but not the left. Sometimes in the winter it gets so bad I can't wear a glove on that hand or I sweat straight through the water resistant winter glove! This made working at a ski resort and ski racing so difficult. Finally I found my way to google and typed excessive hand sweat, and that led me to a new door opening up. I found my way to the International Hyperhidrosis Society, with information and tips on treatment and even a doctor locator. http://www.sweathelp.org/en/

I found one doctor and got a two week appointment with him, which I saw last Monday. He was quiet and conclusive but had terrible bed side manner and I will not be returning. He wrote a prescription for something to put on my hand, did not tell me anything about it, and sent me off in the matter of a few short minutes. I have an appointment saved with a doctor at Manchester Dartmouth-Hitchcock Medical Center in Manchester, NH and will be seeing him in August to get a second opinion and see what he can do to help. I hope this post may find someone else suffering excessive sweating that needs a direction to be pointed in as well.

20/20 Interviews Wrapped Up

For the past two days I had a national team on my property and in my life to get to know me. They saw my room and watched as I took medicines, wrapped my IV up, prepared for a shower, wrote a new blog entry, visited my miniature horse, ate ice cream, and performed regular activities. Nothing about the experience was regular however. It was surreal having strangers going to and from and putting a microphone on you and following you around. I'm used to just doing my thing pretty quietly but there was nothing quiet about the new visitors. We spent today doing interviews in my grandmothers kitchen 20 minutes away. Jay Schadler and I sat on the couch and talked for close to two hours, three quarters of that being intellectual interview questions. I had the speech problems all day but pressed on to do all that talking and hung in there while my mom and boyfriend were also interviewed. As quickly as they had swarmed in, they packed up and hit the road to track down my Lyme doctor and get an interview with him. Now that they have all the film they need, it is up to the editors to portray it correctly with the information and support we need in the Lyme Disease community. I'm in sweet celebration now for all the stress of it to be over and be able to sit back and watch the rest of the process take place. Maybe this will travel to other interviews in the future, or maybe not. As long as people can get a better perspective on the hell that is considered my life, that is all that matters.

 Interview time!

 Me Getting a Mic on.

Interview camera angle.

ILADS Conference and Finally Coinfection treatment that works!

One of my newer med.s I have been started on is Coartem, a prescription Artemesia product which you take 3 days out of the month to fight Bartonella. My Bart symptoms are noticeably worsened including air hunger, swollen feet, fatigue, and more after taking the Coartem for about a week. I am close to taking my third monthly round of Coartem and prepared to start detoxing the dead bugs intensely. Another new medicine that I was started on was Tindamax. When my LLMD (Lyme Literate Medical Doctor) went to the International Lyme and Associated Disease conference in Canada he learned a lot about pulsing the Tindamax to treat Babesia much like The IV Rocephin for Lyme. You take high doses 3 days a week and detox the other 4 days giving the bugs a hit and run chance. The minute they run they get hit again and after much cleaning and detoxing we can eliminate the bugs and their harmful toxins from the body. Aside from Tindamax he doubled my Rifampin which is a huge hit to the body and turns urine a deep orange color, and I actually believe that after all these things were added and increased I've started either having Gall Bladder or Spleen pain that's not pinpoint able.

A Plus side to the conference is my Vermont LLMD Spoke and showed one of my videos from an episode I had with prominent speech issues and tremors. So without knowing it, I'm famous :) Thousands of doctors got to learn from the mistakes of 10 illiterate ones.

Trying a New Oral Contraceptive

The last birth control I was on was for the ovarian cysts. This time around we are trying a contraceptive called Seasonique which stops the cycle and would treat the symptoms and pain of endometriosis. Hopefully this will work better than the last one. My ultrasounds have all been clear and not found any evidence of cysts since the initial cyst and surgery. We just are at the last rope and thinking maybe some endometrio cells escaped from the surgery or maybe the Lyme has caused my womanly parts to form endometriosis from all the inflammation and cysts. Therefor I would have pain all the time like I do, and some cysts like I have had, and a contraceptive that stops the cycle for 3 months should help. Now its just a waiting game to see if it works.

New Specialist in Vermont

Friday was the end all, be all. I had been suffering from autism-like symptoms for just days, since the Saturday before. Yet still I was bad enough, pacing in my wheelchair, screaming at the ceiling, talking a million miles per hour, and sometimes not even making sense with my mumbling, to the point of keeping myself up at night, that a doctor in west Vermont was willing to fit me in his busy schedule that week. After hopeful calls to Dr. J in Connecticut, the world's only pediatric Lyme specialist, we got a hold of the doc. himself and he said his practice    was closed to new patients but he recommended the doctor in Vermont who was familiar with Autism and Lyme. He fit us in around lunch time Friday and it was a hectic 3 1/2 hour car ride there. The whole time I chattered and screamed out the window and I don't even remember the trip. Talk about a long car ride, I'm sure both my parents and my boyfriend Tyler were ready to leave me in Vermont. The Doctor saw me throughout the 2 hours in his office and prescribed the step we are going to take before we try IV Rocephin treatment. I was prescribed anti fungals short term, anti inflammatorys for my brain, a medicine in the same family of Rocephin called Onnicef,  along with Zithromax and Plaquenil, even B supplements. I am also on a Gluten Free, Casein free, Caffeine Free, low Sugar diet, see post about New Diet. This should be a fun trip and the hope is to reduce neurological inflammation and increase my energy levels.

Babesia Treatment Started 6-17-09

Babesia, one of the many co infections of Lyme, is not easy to treat and can cause many symptoms that can disable someone to regular every day activities. This strand of bacteria alone has hundreds of different strands within itself, and is something that my family was not comfortably able to afford testing for. Through Igenex labs in Ca., the one trustworthy Lyme Literate lab in the U.S. that tests for all its infections CORRECTLY, It will cost somewhere up to or around $600 for the extended co infections testing. Just for Babesia, or Bartonella testing, it is somewhere over $100 a piece! This is pricey, as the co infection tests are far more extensive and tough to execute than Lyme Disease. In fact, it is tough to even get one of these tests done through a local lab, and it is almost a waste of time in my mind as it won't be accurate enough to barely tell you anything. However, every person has different body types and the bacteria may show up more for one than another...... it is all dependent on the way god wants it to work out.

So if testing and diagnosis is so difficult, then you can imagine that treatment is tough too. Most of my symptoms (headaches, sleep apnea, concentration, dizziness, fatigue, stretch mark-like rash) all point to Babesia and/or Bartonella. We have tried treatment towards Bartonella and got no effect, so now we have pulled out the big weapons and are going to pack a huge punch to Babesia! Since 6-17-09 when I saw the LLMD, he prescribed Zithromax (a powerful antibiotic usually prescribed in a five day dose to last up to 14 days) so that it could treat Babesia and/or Lyme, mostly Babesia. There are some treatment regimens that claim treatment of co infections before the Lyme is more effective. For me only time will tell. The Zithromax is an every day 500 Mg. dose for me, to be taken by itself without herbs/supplements/vitamins. This is tough to accomplish when you take near 62 pills a day. The effect of the Zithromax was that I had a herx reaction (finally after trying medicines for 9 months with NO effect but steady worsening. Con was that It was July 4 weekend to start with, keeping me out of some exciting events, and that we had roped ourself into puppy sitting that weekend, and I was suppose to help a LOT.). Then I realized a very slight reduction to headache pain. It was just enough to take the edge off of the constant pain I felt, and enough to encourage me to get to work with my summer project of completing redecorating my room.

7-22-09~ the LLMD appointment went good. It has been decided that I am starting Mepron to go with the Artemesia, and Zithromax for a full blown Babesia treatment! The issue is in the Mepron. It is only an oral medicine, that comes only in liquid form, and only in Citrus flavor which I don't even like! This medicine is the thickest, and most NASTY medicine I have ever had to take. It is bright yellow, like a school bus, and literally the texture of paint, Elmer's glue, or nail polish. It feels like Concrete running through your system, and I can feel it moving through my entire GI track, which isn't very appetizing. Having to take a teaspoon of Mepron twice a day right after a meal is kind of similar to having to drink Barium before an Upper GI Test. It has a bad flavor, worse texture, and worse effect of toxicity of my body! I thought nothing could be worse than the Bicillin Injections I tried.

I hope though that this Mepron will move through all my body systems and effectively sweep the Babesia infection out of me, making me feel well enough to move on with my life dreams and aspirations.

Heavy Pill Load

One thing that Lyme Disease pushes you to do is take many supplements and medications! This is something we all have to go through. It's stressful, and very pesky, but important to keep every system of the body working right, because there is also Lyme patients that don't do so well unless they get their pills! ;-)

I personally can relate to LOADS of pills, and the cumbersome task of swallowing every one of them, up to 5 times a day! Most of these include the supplements, vitamins, and herbs required to fight Lyme naturally. Others may be for assistance in the gastric system, organ function, or are just prescription medicine for different symptoms. I remember the day when I was told by my MD (this was when I was very young, before Lyme) that I would start swallowing pills from now on! It seemed like the end of the world!

I never could have prepared myself for the place I am at now with my professional pill taking skills! In the beginning it started under 10 pills a day, and when we reached 10 it was scary. As doses rose and kept the pill count climbing, it reached 11, then 15, 20, 25! We were shocked as we were told to take more and more types of pills, and the count varied, and rose again to 35 pills a day, and finally we decided to stop counting. As I now am at full doses of multiple herbs to fight the Lyme, and others to fight Co-infections, some to improve Liver function, and lower levels of acid in my stomach, and others for basic vitamins, it has become necessary to upgrade from the biggest pill box CVS was selling at the time, to a custom made box. A bead box that is MUCH bigger and labeled here at home, with much larger slots too! :-) The sad part about the upgrade, is that in the new box we have a tally of 61 pills every day! That averages out to about 15 pills per serving, and I have my 'pill meal' 4 times a day.

On a positive note, what a way to lose weight! Why don't we all just switch to pill diets! I am so full by the time I'm done this tedious task that I have learned to only eat about 2/3 of the proportion I could have ate. Then I still give myself 15-30 minutes for my food to settle since they make me so nauseous!

As you can tell I make fun of it, but when the moment comes to load my stomach with this number of pills I am not thrilled, in fact more annoyed than anything!

Sadly but surely, I can relate! So to those of you pill taking warriors, it's okay!
Elaina