Short update

Well life is still the same. Need to update misdiagnosis page w/ real stories. Hopefully can do that soon.

gonna treat for parasites soon. Also getting 23 and me test done w/ a donation from amazing person.

I’ll update after treating for parasites. Hope everyone is feeling good

Newest post on lymeaid

I’ve blogged about this before but wanted to bring it up again.

Since I don’t have much of update of my own to give since I’m still saving for the CT scan to see if we can find something and nothing has changed as far as my pain and symptoms are concerned I thought I would give some advice about finding a doc.

First if you think you might have Lyme disease and your regular doctor runs a test and its negative does NOT mean you don’t have Lyme. Lyme tests are horribly inaccurate. It’s best if a Lyme lab is used such as Igenex. So you need to then find a LLMD. you can’t just goggle it for most doctors and you definitely can’t look it up I’m the phone book. There’s a referral list that includes doctors who follow ILADS and you can also go to lymenet.org and ask for a referral there. There are some groups on Facebook and other places that will give you ideas but be careful. Just because a person says or thinks a doctor is a LLMD does not mean they are.

After a few bad doctor choices on the advice of others I came up with a list of questions a person can ask prior to making the appt or during the appt. I suggest asking many of them prior to making the appt so you don’t waste time or money. The list follows.

When we are searching for a doctor (even if one is found on a “lyme doc list”) we must remember that we still must ask questions of the office before deciding on a doctor.
Just because a doc is on a list does not make them a LLMD. They have been added because some patient at some point directed us towards that doctor. Sometimes it’s only one patient that gives a great review that gets a doctor added to a list.

Sometimes the docs on the list WERE LLMDs but have since stopped treating due to their own personal reasons such as their own medical problems, or sometimes problems with the med board and stuff.

So it is IMPERATIVE we ask questions before making an appt and wasting our time and money. I have a short list of some questions you can ask before making an appt as follows:

Do you use Igenex or some other “Lyme Lab” for testing?

What other labs do you use for testing for other blood work? (i.e. CBC, CMP, Vitamins)
Some believe highly in the results of a CD-57 test in relation to Lyme, so ask what they think of the CD-57 test.

How do they treat, with what? Do they follow any specific protocols, if so who’s?

Are they part of ILADS or are they at least aware of ILADS and their protocols?

How long have they been treating Lyme and do they have any success stories to back their treatment?

Do they test for Co infections?

Do they treat based on symptoms of Lyme AND co-infections, even if the test reads negative?
Do they test and treat parasites?

Do they take yeast into consideration? And if so, how do they handle that?

How do they test for other toxins: heavy metals, mold and all other things that could effect a Lyme Patient?

What supplements do they recommend and for what?

Probiotics? They are an important part of getting better, we need to protect our immune systems while we are tearing them apart.

How long is the first appt? If it shorter than about one hour, ask more questions, because that is usually too short for a first appt with a LLMD.

Also many people are not aware but you can google the board for doctors in your state and check out any doctor with a license. It will tell you about their history and if they’ve ever had any claims filed against against them. You can also ask the opinion of other Lyme patients. However I’m a firm believer in protecting our doctors so I don’t suggest using a full name or city in any public posting. I would say Dr S in VA and while there may be more than one doctor with that initial you can figure that out via a private message or email.
Remember though everyone is going to have different opinions and different experiences.

I went to one doctor who was supposed to be a LLMD. However that wasn’t the case. He would treat with IVs if and only if you had a positive CDC test and had never been treated. Because I had already been on oral meds for a few months he said I had post Lyme which us chronic Lyme patients know doesn’t exist, it is untreated or under treated Lyme. So he believed in Lyme but not chronic Lyme. That was a waste of over $200 and a four hour ride one way.
I hope this helps some more people. I’ve gotten responses on my blog that the list has really helped them so I thought I would add it here.

Praying for everyone’s health and wellbeing.

Short update

Talked to doc and doc wants a full workup from a hospital- but I don’t have insurance- so this is gonna cost- but I need to find out what’s going on…I can’t keep living like this- it’s not a life to be stuck on the couch in horrible pain.

So going to try to figure this all out with hubby, kids, and hubby working, and see what I can do. Doc would rather me go to the hospital where doc has privledges but that’s a little far, which I would rather do that too but it depends on work and how much time hubby would have to take off…soooo…we might have to have doc call ahead to the hospital here and see if they will work with my doc and me to see what’s going on. So I dunno, I have to decide what we are going to do. I’m not sure I want to wait 2 more weeks either which is when we are going up north so I dunno.

I just know this hospital bill is gonna be HIGH and it’s gonna take me forever to pay it off. But I have to figure out what the hell is going on with me. Because we’re all confused. This doesn’t feel like lyme anymore with my symptoms remaining the same since Dec just getting worse and worse, day by day…

So that’s where I’m at…

Recent post on lymeaid

Well after my most recent post to my blog someone suggested maybe I was in remission from Lyme and the abx were actually CAUSING my symptoms. Well that could be good news or bad. Of course being in remission from Lyme would be a wonderful thing, except that the ONLY thing that changed once I stopped abx was my HR has gone back down, closer to normal and even sometimes in the normal range, for the first time in years.

Yet over a week later the other symptoms still remain. For those of you who are familar with Lyme you know it’s ever changing- month to month, day to day, even hour to hour. Our symptoms are constantly changing and constantly waxing and waning, especially when on abx. I never herxed for the time period I was back on abx which was a little over a month.

Since the end of Dec my symptoms have been the same- no different symptoms- no new symptoms- no changes- except my HR going back to normal. My HR for the past 3-4 years has been steady between 125-165 and would sometimes get as high as 185 resting. However since stopping the abx it has been between 82-95 and highest at 106. It’s actually kind of scary that such a change took place.

But other then that my symptoms have remained the same. Since I’ve posted them in a few different places and I haven’t posted the entire story all in one place at one time I figured I would do that here and I will also be adding this content to my blog for my followers there.

So here we go- I had been off abx for most of December because I actually caught a cold and I didn’t want the abx to lower my immune system even more so I decided I would stop taking them until I got over the cold- which again for people familiar with Lyme, getting sick with colds and such is actually a good thing- it means your body is healing. So that was the beginning of Dec- but decided even after I was better I was going to stay off that abx because I was going to be adding a different one in to treat Bart-which I have. So towards the end of Dec I took that for a few days every other day. I think I took maybe 3 pills over a 6 day period. No herx. Usually THAT abx in particular causes a HUGE herx within HOURS of me taking it.

So anyway- I crashed on one of the days off of the abx and I chalked it up to the abx so I backed off of them. However the symptoms after the crash in late Dec have remained. I was off ALL abx for the month of Jan. My LLMD wasn’t sure if Lyme and co-s were still causing my symptoms so we decided to re-start the abx- Well I started with one every other day and quickly upped them. Probably within two weeks I was up to two pills everyday, still NO HERX. Well since the one person’s comment about remission, I thought ok- I’ll try it- and I stopped abx. My HR dropped but other symptoms still remain.

Since the end of December I have had the following symptoms. I want to first say they have remained the same everyday- the only thing that changes is the severity of pain depending on how much I do vs. how much I rest. The more pressure I put on my body the worse the pain- however HR is still remaining below 106 (like right now it’s 96 bpm).

Symptoms-

Back pain (used to be concentrated on my right side right at the bottom of my ribs, it would occasionally go around the front- they call is costochondritis basically) However now it is my whole back and it is worse near my spine.

Chest pain- (used to be stabbing) Now it is achy but sharp. It is not concentrated in one place it is all over my chest. There is also a lot of pressure.

Shortness of breath- (used to come and go) It is consistent, I do not get a break from it, my inhaler does not work.

Night Sweats- New since the end of Dec but has been pretty consistent since then. Some nights it doesn’t happen, some it does.

Fever- Over 99.6 WITH medication (tylenol and Ibprofen) so I don’t know how high it would get without it. This has been a consistent symptom since Dec with more days with a fever then without

Headaches- New since crash in Dec but consistent since then

Abdominal pain- New since Dec but consistent since then. Also related to that is the bloating and feeling of being full even if I don’t eat. I should all point out that I have ALWAYS only eaten dinner for many years. Every once in a blue moon I eat breakfast but it’s rare. And now I eating too much will cause pressure that gets unbearable and it becomes painful. So I cannot over eat but am eating the same.

Hives/Rashes/Itchy skin- this had happened prior to Dec but not for a while. Since December the itchy skin has been consistent. Hives and rash come and go.

Swollen lymphs and glands- has happened prior to Dec crash but it usually subsided. It has been consistent

Sore throat, pain in neck- again has happened before but has never been consistent until crash in Dec.

Weight loss- I am couch bound- I’m not eating less than what I use to prior to being couch bound yet I’m still losing weight/not gaining anything. I have lost weight over the last year (40lbs in total) but one would think I would be gaining weight now while eating the same but not moving nearly as much (I’m a house painter for work, and prior to the crash I was on my feet all day, everyday, constantly moving)

Fatigue- again while this has happened prior to Dec it is happening a lot more often now.

And finally I’m bruisng much easier then ever before since Dec crash and am also more pale than usual.

Those are all symptoms of another condition but I’m not sharing that publicly yet because I don’t know what’s going on. I don’t want to tell people because I just don’t want to until I have some answers. We all know these are also Lyme and co symptoms. However the issue with that is I’m not herxing on abx and I’m not making progress with them either. I’m stagnant with these symptoms. I’ve never gone this long ( 2 1/2 months now) with the same symptoms.

I need a chest CT scan and am praying something works out and I can get it to soon. That’s what my doc wants. My doc isn’t sure what’s caused this crash or the reason for the severe pain I’m in that’s causing me to be couch bound.

Is it still lyme and cos? Is it something else that snuck in while my immune system was compromised and that runs in my family- A LOT? Is it something completely different? Does it have to do with the fact that I’ve been exposed to asbestos, mold, pesticides, etc all while working? I don’t know anymore.

That is the one of the hardest things emotionally right now, I don’t know. I have no answers. I just want an answer at this point.

Is my lyme in remission?? Is this something else?? And if so, what??? Only tests and time will tell. It’s just a matter of being able to afford the tests. Then what is the CT scan comes back with nothing? Then what? Where do I go from there? I’m so lost and so confused. Prior to the end of December I had NO doubts about Lyme because I was getting better with treatment. Now? Nothing is helping….

So for all those who have been asking the whole story in one place- here it is…

Praying for things to work out so I can get my tests and praying they show SOMETHING. I need ANSWERS, I can’t keep living like this without knowing some way to try to get better. I definitely can’t live the rest of my life like this…at all.

And as always praying for everyone dealing with Lyme or any other chronic illness. You can find me on twitter @Garzab2701 (although I don’t ONLY tweet aboout Lyme), FB- Brittany Lyme Aware (bear with me on that one because I can only answer from the comp and getting on the comp is all relative to how I’m feeling).

Still no herxing…

Quick update because I need to lay back down. However, I’m still NOT herxing and I’ve been taking 2 abx twice a day since Sunday. My symptoms do get worse at times but they are the same symptoms as the beginning of the crash and they have not been worse than my worst days since the crash.

No new symptoms, nothing. I’m going to add another abx that knocks me off my ass everytime today or tomorrow and I’m going to start it 1 a day every day to start just in case. If that doesn’t make me herx…then I’ll really be terrified!

I’ll keep ya posted.

Praying for you all!

Lyme-Aid Article- easier to read…

For some reason my paragraphs aren’t seperating…I tried repeatedly to get them to seperate because I know it can be hard for lyme patients to read long paragraphs, but I can’t fix it. And by all means @lymeaid-if you can fix the paragraph breaks I would appreciate it!!!

So literally I have been in pain for over 1210 days STRAIGHT, no relief, no times of no pain. Something has always hurt at one point or another, back, legs, head, chest, feet, arms, joints, stomach, you name it, it has hurt including my skin- only Lyme patients will get that and maybe those misdiagnosed with some other conditions… Not complaining- explaining.

It’s hard to stay positive and upbeat when you’re in pain every day of your life. It really is, it’s a daily struggle. I do what I can to keep myself sane. I blog when I can, I have my FB pages (Brittany Lyme Aware), my Twitter page (@GarzaB2701) and I go to school online- which has been harder and harder since my crash in Dec. I have my favorite shows and DVR them in the middle of the night. I have my kindle that was a Christmas present to read when I’m not reading texts. And thanks to one amazing person I have an awesome new phone to play with and discover new things every day.

I try to do what I can, when I can. For instance, each day I try to do something around the house. I usually only try to do one thing at a time, one day I’ll vacuum, another laundry, another kitchen, etc. I try to keep up with the housework and homework because hubby is working his butt of to support us because I can’t help right now.

I think about how much I took for granted before I got sick and how much healthy people take for granted everyday of their lives.
Simple things
1. Walking
2. Standing
3. Going to the bathroom
4. Sitting up
5. Trying to talk normally without stumbling, stuttering, or losing my words
6. Going to the store without serious planning and pain afterwards
7. Driving at all, but especially long distances
8. Just basically living life without pain everyday

I can’t wait for the day I’m in remission (if this is still only Lyme and friends) and I don’t have pain. I would give a lot to have a day with NO PAIN. I know once I’m better (and I will get better, I have to believe that) I will NEVER take anything for granted again. I will dance in the rain and run in the sand and water at the beach!

The point is I want healthy people to be happy with what they have, their health. They may be going through other difficult times but they should be grateful for their health!!! Something I will never ever take for granted again for myself. And I thank God everyday for the health of my kids and hubby (although I think he has Lyme but his immune system is so strong).

Despite the pain and every other symptom I’m also terrified right now. I’m STILL not herxing. Those who are not familiar with lyme- herxing is when your symptoms get worse or new symptoms appear due to the die off of the bugs in your body. I’ve upped my abx (antibiotics) at an extremely fast rate, quicker than ever before. I always herx almost immediately when I start an abx, any abx, and still nothing. Today I’m adding in a second pill twice a day. Normally I would add an extra one in the morning every other day for a week, then everyday for a week or so then a second one at night every other day…so on and so forth… But nope, I’m adding 2 extra pills a day, morning and night, today, tomorrow, the next day, to see if I will herx.

If I don’t…then I’m adding in a different abx. This other abx literally knocks me off my feet the second I take it, so if I don’t herx from that then I will be even more worried than I am now that something else snuck in my body while Lyme and friends were killing my immune system. That would be the point of my doc wanting the Chest CT scan. Doc is worried that either something is there that shouldn’t be or something that’s supposed to be there isn’t right.

I can’t afford it though. Lyme is so expensive- especially when you don’t have insurance. So I have a gofundme site (http://www.gofundme.com/198f0o) that I made a while ago but didn’t share for a long time because I hate asking for help. Although it hasn’t been successful, and really that’s fine, because nobody owes me anything…they don’t know me. It’s not their problem, it’s mine. Eventually I will find a way to pay for it. I’m going to contact needymeds and see if they work with any of the radiology places around me, although I doubt it because of the area I live in, but it’s worth a shot. I’m also going to call around and see if any of the radiology places will take payments, long shot, but still worth it.

Anyway, that’s my life right now, still crashing, or crashed I guess since it’s not getting worse, just stagnant. I wish I had more positive news, and more positive update, like the abx were working, or at the very I was herxing, but it is what it is…

I keep writing anytime I can, anywhere I can to help spread awareness about Lyme. I even go on MS, ALS, RA, Fibro, etc, support group pages and provide them evidence of the misdiagnosis that happen concerning those conditions and Lyme. If I can help one person with a death sentence get a new lease on life I’m happy. The more I help, the better I feel inside.

It’s all I can do right now. I’m a fixer, a helper, and right now helping other patients find docs, support groups, or a diagnosis is all I can do…so I’ll keep doing that for now, until I can do more. I pray for all of you suffering from Lyme or ANY chronic illness.

It’s a tough, hard road. And it’s a road that you have to try to stay positive while going down or you will get depressed or go crazy. I’m fighting feelings of worthlessness, pain, laziness (even though I can’t help it, unless I want more pain), feeling not good enough for my family, like I’m not holding up my part of the deal. It’s hard. I have to stay positive to keep those feelings away. We all do.

I haven’t been blogging as much but my blog has a ton of information on it…links to different information about Lyme, treating it, helpful groups, and sites. I also have tabs about abx, detoxing, my whole story, symptoms of Lyme and co-infections. I’ve been told it’s helped a lot of people and I’m grateful for that, I hope it continues to help people. So here’s hoping to a small miracle to get this CT scan and making sure we are still only dealing with Lyme and Co-s. You can find my blog at https://littlebithaslyme.wordpress.com/