Update: No Antibiotics, No Flu Vaccine, CFS.. And A Cold
Primary Doctor Follow Up
I have now been off of antibiotics for over a month (I think lol) and I can’t say if I feel any worse or not. I know antibiotics did help me with a few issues and I am at least 5% better today than I was 2 years ago at my first LLMD appointment. Everyday I feel like complete crap so I can’t sit and tell you if stopping has made anything feel any different. All the symptoms are still there and I still just lay in my chair daily doing nothing at all. I did need a break so my body can heal and detox though.
I finally left the house this month to go to my follow up with my primary doctor and wouldn’t you know it I caught a cold. One of the reasons I never leave the house besides being too ill is also because I seem to catch every bug that is going around within minutes of being exposed to the public now.
During my follow up we discussed my high cholesterol and concluded it is just from genetics and runs in my family. She asked that I lose some weight, I weigh 200 lbs and I am 6 feet tall so it’s not like I am that much overweight.All of my STD, HIV and other stupid tests she ordered since she refuses to believe Lyme is chronic all came bag negative.
What was awkward is she asked me to strip down naked so she can do a physical exam on me. I was freezing and shivering the whole time. She made me lay down as she inspected my male parts for a few minutes then the awkward part happened…she asked me “do you still get erections”. I don’t know if it was bad timing or what.
So as I am naked and she is performing various tests she kept saying to me “you just have a bad case of chronic Fibromyalgia not Lyme”. Then she saw how my chest started turning red and rashy and she said “that’s weird”…. then on my back she saw weird red marks on my skin and said “hmm interesting that is odd”….then she noticed my stretch marks all over my body which are either Bartonella or Lupus and she said “wow those are very red and not normal hmmm”.
So at this point I am thinking she is changing her mind and maybe thinking I do have more than Fibromyalgia but not her final diagnoses was Fibromyalgia with possibilities of something else. She didn’t order any new blood tests and didn’t order a follow up so that tells me she is done looking for what else I could have. She did say the stretch marks and rashes were more Lupus than Fibro.
My primary doctor deal with a lot of very ill patients and most with HIV so I thought maybe she would understand I have more than just Fibromyalgia syndrome (FMS). I showed her all of my symptoms on a detailed list which she just set down and left in the room. On that list it shows how many of my symptoms are not Fibromyalgia related but they are 100% Lyme, Babesia and Bartonella related.
I asked the doctor if she thought I had any kind of immune deficiency and should I be tested for it and she replied “no”. She told me Mycoplasma and C. Pneumoniae are both nothing to worry about. She didn’t seem too interested in my double MTHFR mutation. On the positive side everything was free since insurance covers all non-lyme related appointments.
So she put me back on Lyrica again. I am currently battling with my insurance to get it covered again. Nothing like battling to get every lyme med covered and Fibro meds too.
The Flu Vaccine
I used to get the flu vaccine annually for the past 2-3 years before I became disabled and I rarely would get the flu. Before the flu shots I used to get the flu at least 2-3 times a year. I would get bronchitis, strep throat, the flu, colds and other issues all in the same year and more than a normal healthy person.
Since being disabled with Lyme, Fibro, CFS…etc I was told by my LLMD not to get the flu vaccine. So for the past 3-4 years I have avoided the flu shot. I never leave my house so I am never around the public so I know that helps me a lot. I have visitors sometimes and they can bring the bugs into my house.
This year is supposed to be one of the worst flu seasons so I am keeping my fingers crossed. As you may or may not know with chronic Lyme we feel like we have a bad flu everyday so by getting the flu it will be 10 times worse.
Having a cold already makes me feel worse. The cold isn’t really nothing I cannot handle but it’s more annoying than anything on top of all the Lyme symptoms and pain. Last year I had a cold that lasted at least 2-3 months along with strep throat. It just didn’t seem to want to go away thanks to my immune system.
I see people on social media saying how they have a cold or flu and they say they are “dying”, if they only knew what chronically ill people go through. I want to tell them “imagine what you feel like right now with your flu and add more symptoms and pain and the knowing you will feel like that everyday for possibly the rest of your life”.
Cognitive Problems and CFS
My cognitive problems have been even worse. I am very forgetful, cannot find words or names…the usual. I find it very hard to follow my shows like NCIS or to hold a conversation with my parents. I will make notes and set alarms to do things and I still forget to do them.
The cognitive problems have been at their worst for about 4 years now. I will say the severe brain pressure and very loud buzzing/ringing sounds are a little better though. But now it is more like I have the brain of a 90 year old. I never have any idea what day it is or what month and time seems to be flying by. I still thought it was Thanksgiving coming when it was Christmas.
I have forgotten names of most of my support group friends and always forget to contact them. I will just make up word because I get tired of trying to think of the real word. My latest thing is calling everything a “washing machine” when they are far from a real washing machine. No idea why that is the only word that comes to mind.
My CFS has been really bad. For the last 15 plus years I had more insomnia days than CFS days. Last year I was sleeping maybe 30 minutes a day and up awake for 2-3 days before crashing and sleeping finally then repeat. But so far the last few months have been really hard for me to keep my eyes open and my already low energy is at a zero.
I will be watching TV and fall asleep then wake up to rewind the show and then fall asleep again and again even after sleeping for 12-14 hours. I have been skipping taking a daily shower because when I go to take a shower I fall onto my bed and can’t get up and end up falling asleep. I am the type that has to have my daily shower or my skin will get rashes. I will be playing a video game and just dose off during the action in the game.
A normal person may get 8-9 hours of sleep but I used to average 2-4 hours of sleep from age 18 until just before I became disabled at age 33 in 2009. I worked jobs where I had to be up very early and got home late. I could sleep 2 hours and feel fine and never be tired. So sleeping 8 to 14 hours is very rare for me and being exhausted after that much sleep is even more rare. I don’t know if I like being awake for days with insomnia better or dozing off every second and having no energy with CFS better.
I have also been having more out-of-body type experiences and sleep paralysis. The other night I was half-awake and I swear I felt like my body and arms were going right through my bed like I was on a cloud (this was on no pills/drugs). Just some weird stuff going on.
New Year
I hope all of you are finding some healing on your journey and are finding some peace, happiness and love. In the past few months I have seen some people go into remission with their Lyme so there is always hope. I know the cold weather makes all of us fellow Lyme, Fibro and CFS sufferers even worse so stay warm and get your rest. Have a much better new year.
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49er Bryan
Lyme Inside - Living with Late Stage Lyme Disease 
Hi, I read your latest post with interest…I too have Lyme and a variety of other bugs. Without going into the long tale suffice to say I started IV ABX last spring after receiving a remarkably clean bill of health according to many Lyme tests etc, but very symptomatic. I hit a rough patch with side effects 5 months later and dropped the ABX for awhile. At about two weeks I thought why not make it a month and have the new Lyme culture done? Maybe put to rest any doubts about my diagnosis. A month later I had my answer! Yes they cultured Lyme spirochetes from my blood after 5 months IV and 2 1/2 years oral ABX!! If you receive a positive result it is 100% accurate, if negative, there’s a 6% possibility of a false negative. A familiar feeling of relief, validation and then a hf moment! What now?
So I guess I’m suggesting that if you want to take a chance and have a test done that may put to rest the question I would suggest advanced lab culture…
I have opted to resume iv ABX, this time I am trying to follow Burrascano’s protocol very carefully, including PT followed by a regular exercise routine, (I too have a very difficult time doing anything, let alone actually exercise; this will be a huge challenge!). There is unfortunately no one treatment course that works for everyone and you have to find your own way, but for now this is what I’ve decided to do….for better or for worse!!
I feel your pain (most literally) and frustration!!!
Wishing you great days ahead, Posy
Hi Posy,
I know what you mean. I know I have Lyme and have had it for over 30 years now. I can remember being bit and getting sick and always being sick but the doctors do not want to hear that. You just feel lost after hearing 20 different doctors give you 20 different opinions huh. I know I have Fibro, herniated discs, Hypothyroid and CFS…etc all caused by Lyme but doctors seem to think all those mean nothing. It is so frustrating and I ask the doctors “what would you do and think in my shoes”. And I do know the Western Blot is grossly inaccurate but yet the IDSA/CDC think it is proof.
I was actually going to pay the $600 (?) and have the Dr B, advanced lab culture done just to have something to shove in my PCP’s face. She did seem like she was doubted herself at my last visit as if she suspects Lyme but can’t tell me do to the politics and the IDSA. She kept saying “hmmm weird’ and then just kind of said Fibro as she ran out oif the room on to the next patient. I was thinking “well we already knew for 4 years and from 4 doctors it is Fibro so duh!” but why the “hmm this is strange” comments from her?
I’m glad you finally got a solid answer and know what you are doing by taking harsh antibiotics is the right thing for you despite the CDC’s and IDSA’s report that 10 days of antibiotic will kill off all lyme spiros. Do they think we are stupid? I will be starting antibiotics back up again soon along with Mepron which seemed to help with my Babesia the most.
Best of luck with your healing journey and feel free to keep me updated on your progress and any new info. Thanks. – Bryan
PS. I should have mentioned that the symptoms you describe are all so very close to mine, it has been such a bizarre rollercoaster ride hasn’t it? Every once in a blue moon I have a good day and those moments are so important because I have a chance to recall what normal should be. A reminder that no one should feel this way routinely and indeed something is very very wrong.
PSPS I have done something that has improved my cognitive problems enormously. I read somewhere about a fellow in the same predicament who took a drug called Intuniv. It is FDA approved for treatment of ADH in teens. It is not a stimulant but actually increases blood flow to the pre-frontal cortex (the headquarters of your executive skills) as you are probably aware Lyme causes a decrease in blood circulation in the brain. Anyway you should ask your DR about it, this guy took 3mg and I take 2mg, I weigh 135 lb. the only significant side effect I had to watch is that it causes low blood pressure, mine is already low… Maybe before you post my messages you could remove my last name? Thanks
Thanks for the tip. Mangosteen seemed to help my brain for about 3 days but then it stopped. My new doc doesn’t seem willing to let me try anything she keeps refusing to give me amour for my hypothyroid, shouldn’t it be my choice? I’m sorry you are going through this nightmare disease. It is so surreal and not at all how we expected our lives to turn out huh. It’s like our one hard working , fun selves have become a medicine taking robot just to try and survive and everything we once knew is gone. Again I wish you luck with your journey. You can add me on facebook if you ever want to chat.
I think I updated the post and took out your last name? Let me know if it is not fixed okay. Thanks.
Happy New Year! It sounds like things have been really tough for you. How do you manage to get by? I live alone and it’s very hard to go out for groceries and such. Mostly I stay home, just like you. I send you kind thoughts for this upcoming year. May you have all the healing you need. ~Joanne
Hi Joanne, hope your new year is going better so far. I manage to get by with help from my parents, without them I would probably be homeless or in some homeless shelter. They cook and help me with everything. Luckily I have SSDI to help pay for all my meds and appointments. Hope your 2013 is much better for you and you find someone to help take care of you. I don’t drive anymore so I know it must be really difficult. Sorry you have to deal with this.
Howdy just wanted to give you a quick heads up. The text in your
content seem to be running off the screen in Chrome.
I’m not sure if this is a formatting issue or something to do with browser compatibility but I figured I’d post to let
you know. The design and style look great though!
Hope you get the problem fixed soon. Cheers
Thanks, and thanks for the heads up. I use Chrome and Firefox and it is fine on my browsers. Have you checked your ‘zoom’ in settings? If it is set over 100% text will be large and run off the page.
I hope whatever you decide to do with your treatment helps in this new year. I have been sick going on five years now, I got a diagnosis finally in march of 2012. By that time I was a 23 year old newlywed (2 years) type 1 diabetic (my LLMD is sure it was caused by my Lyme or bartonella or both) I had lost fifty pounds and couldn’t tolerate food at all for about 6 months before diagnosis, and I vomited and dealt with chronic nausea for about a year and a half. The joint pain started three weeks after I got married. I woke up crying in the middle of the night, my fingers the size of hot dogs and my palms aching like someone took a jack hammer to them. That kept happening daily, my endocrinologist thought it was my diabetes making my immune system act up, so he gave me immunosuppressants and lots and lots of steroids! Yay! He never tried to peace together my symptoms and Everytime I got a new one he would just find a way to put another bandaid on it. My chest pain/anxiety was from stress, put me on Ativan, I’ve had to switch to Valium, klonopin,Xanax. Every time I told him the symptom was still there just upped my dose or added a pain pill. Started with lortab, then he moved me to suboxone then morphine then eventually hospitalized with a pain pump. Man did my Lyme disease get pissed from all those steroids and hormones and opiates. Oh and withdrawals were fun. One of the top three worst weeks of my life was cold turkeying morphine and hydrocortisone at the same time.
(Sorry my story is not in any type of chronological order, insomnia and brain fog, just needed to write)
After that week of withdrawals, 4 years of illness with new symptoms every week, losing my ability to walk by myself, watching my angel wife have to suffer and be the breadwinner because I did not leave our bedroom for about 11 months in 2011-2012, and more pain than anyone (except a lymie) could imagine, I found a doctor that referred me to a specialist in TBD Dr. B Waisbren and he looked at me for about ten minutes, he had already read all of my records from ER visits and hospital stays and surgeries and he said “Jae you have chronic Lyme Bell’s palsy of the gut, bartonella, babesia and Epstein Barr virus”
I cried because I had an answer. But I wouldn’t have cried if I knew what would come next. Herxing. Enough said. I was close to death so they had to take risks with my treatment, 8grams rocephin per day 14 weeks, 200 doxy, mepron, Zithromax, plaqenuil, and erythromyocin almost killed me. I guess that’s enough of me complaining for right now, sorry to just comment and tell you my story. You are inspiring, 33 years. I hope I can stand living that long w these diseases if I can’t kill em.
Good luck,
My email is lymediseasereality@gmail.com if you wanna chat. I think I’m the only male in my support group, trying to find others cuz it’s so different for girls then us guys.
You and every other lymie are always in my prayers,
Jae Elle
No need to apologize, your story sounds all too familiar. I’m sorry your life has been ruined by this disease. I’m glad you have your wife in your life because we all need someone who can be our rock and support being so ill. There was a time I trusted all doctors and thought they cared and knew it all…..now I find them to have no compassion and they only seem to want their money. They don’t try to piece together anything but rather tell you a lie that it’s all in your head or just Fibromyalgia. Well yeah it’s Fibro but there are many other issues with it stupid doctor, help me. 30 years of being sick I can say you kind of get used to it if that makes any sense. Don’t get me wrong I still cry in pain but you get a routine down and know who not to go to as far as doctors.
I want to encourage you and say things will get better but for now I am getting worse again and I’m in too much pain to say so. I know many in remission (yes remission doctors and CDC because there is no cure and Lyme never goes away 100%). My aunt is back to work after 20 years of suffering and it took her 8 years of injections and oral abx to get there. So don’t give up hope. I hope you are having a better week and much success on your healing journey. – Bryan
Hi Bryan,
i just came across your blog when I was researching Lyme. I just want to share my story because I believe maybe it could help you (or others reading this). Don’t worry, I’m not trying to sell you anything – I swear. I appreciate the time you took with your blog and found many helpful things so I want to share as well. I’ve likely had Lyme most of my life as I remember being a kid in MI and getting headaches all the time and stiff neck and soreness in my back and legs and I just thought that all kids got that stuff.
Anyway, I had a very minor surgery in 2005 (first time I was put under) and I woke up and never really felt well again. It got worse when my condo drama began and I had black toxic mold and had to sue neighbors after 5 major floods. So much stress and the mold was making me so sick! Then I lost my brother, my niece and most recently my mom. Huge blow to my health. Then job problems – more stress -much worse now. I saw a ton of doctors and had a ton of tests and they all told me nothing was wrong. I started doing research and my first self Dx was Candida (even though I never took antibiotics). I was very frustrated that it could not be diagnosed and I tried the supplements and diet and failed more than once. Just couldn’t stick to it but it did begin my journey of learning about diet and nutrition. Then I read about FM and in 2008 I made an appt with a Rheumatologist and told him I thought I had it and he checked the pain points and confirmed it. He tried to put me on a bucket of drugs but I declined because both my sisters and a brother are a mess because of prescription drugs. He then declined me as a patient because I wouldn’t take his drugs.
So I began taking nutrition classes (real nutrition, not the SAD diet), learning about bio feedback and meditation and following a clean diet and taking supplements under the care of a trusted Naturopath. After about a year I saw a huge improvement and my life was getting back to normal. At that point I started to focus on diet and exercise as I needed to lose 80 lbs and somehow I managed to do it on a modified Atkins diet and my body seemed happy with the absence of carbs (and especially sugar). A year ago I was feeling really great (down 75 lbs) and mountain hiking and doing things I’ve never done in my life and spending time with the new boyfriend. Then…. Some stupid girl decided to try and beat the light in downtown rush hour traffic and she totaled my car. No cuts or broken bones but I was really banged up and it was all downhill from there. My FM symptoms came back full force. I went to see a doctor and told him about the mold and that I’ve suspected for years that I have a bio toxin illness at the root of my health problems. He agreed that there seemed to be SOME underlying cause of all the symptoms and sent me to an ‘eccentric’ Rheumatologist who would test for everything under the sun and find out what is wrong. Thank God for that doctor because he Dx Lyme with a positive Western Blot and that is the LAST thing I ever imagined to be wrong because I don’t remember ever being bitten by a tick.
I’ve been taking oral antibiotics for 3 months now with one Bicillin shot (couldn’t get more because insurance didn’t cover). If anything, I feel a bit worse. My problems have always been cognitive and mostly muscle and sleep issues – not joint. Now I get sharp pains in the joints that were never there but I’m sure it’s just die off. My fatigue is much worse now and I’m gaining weight steadily because I crave sweets and food all day – I think mostly to get the taste of these horrible chemicals out of my mouth. I fear Candida and I’m trying to protect myself. I feel like crap and I don’t have a lot of energy to eat right and exercise so that is my main goal right now – because I have no doubt at all it will make a HUGE difference in my treatment.
So, with all of that said – there are some things I’ve learned that I’d be happy to share and some supplements that proved to be extremely helpful. (and I learned about trusted brands in the classes – the affordable ones that are good quality like Jarrow and NOW.)
One thing that made a huge difference with my headaches and pain in general is magnesium. Now, whenever anyone tells me they get headaches often I suggest they start on it and it almost always works! I guess a lot of us are deficient and don’t know it.
VIT D made a HUGE difference. My level when I was really sick (before Lyme Dx and drugs) was 9. Prescription D didn’t help at all. Daily supps of 10,000 IU and 30 min day of sun only got my level in the 20s. Then I tried a Mercola spray supp of 1000 IU and finally got up to 46 (even though my naturopath doesn’t believe it’s the spray – I know it is and I believe it has to do with digestion and being absorbed in mouth rather than swallowing). 46 is considered within lab ranges (my Naturopath wants everyone 60-70 for optimum health but no matter how hard I tried I couldn’t get close). I felt like a whole new person. Happy and energetic and forgot what it felt like to be sick and tired. It was amazing. Now that I’m sick again – my level is low 30s (and probably sinking as I write this). I try to get sun every day but I don’t think my body does what it’s supposed to do with sun. Maybe it’s a Lyme issue….
There are a few others I’d be happy to share (a good multi is most important) but I would have to check at home for names and dosages. Juicing was really big for me – so easy to throw a bunch of organic greens into a juicer or blender and drink my veggies instead of chewing!
My question for you is about the Candida. How long were you on drugs before it set in? Were you taking probiotics? How bad was it. I’d really appreciate if you could tell me about it because I’m very concerned. I hate taking drugs but I figured I’d give this a fair shot while I have insurance to cover it before resorting to more natural treatment. But I’m fairly certain I could get my symptoms back under control and feeling great with diet and nutrition because I’ve done it already! It’s hard work and expensive and right now I’m paying off car accident bills so it’s drugs for me 😦
Thank you for sharing your story and I am sorry you have been through so much. I too was in at least 5 car accidents (not of my fault on all I was a passenger) fell off a bridge at work….etc and that’s when the Fibro came out and never left. The Lyme and tick-borne diseases just add that icing to the chronically ill cake so to speak. Since then each part of my body is falling apart.
How long were you on drugs before it set in?
I was on aggressive antibiotics and injections for about 2 years when the candida hit full force.
Were you taking probiotics? How bad was it.
I was taking probiotic but I wasn’t taking fluconozale at that time or any coconut oil. It was bad my stomach was messed up but it grew to the outisde of my body in my lower region (male part) and lets just say it was a flesh eating machine. It was a nightmare and I still have scar tissue. It took about 4 months to go away and i put Keto cream (rx) and took Fluco for it and stopped all abx.