Navigating the Diagnoses World ……. Yet Again.

Today I saw a Rheumatologist. Some things I liked, and some I did not.

I did NOT like his readily wanting to diagnose me with Fibromyalgia. I believe it exists, yes, yes. But I think it’s become a catchall for doctors who have given up on trying to diagnose someone. My BIG issue with it is this: Myalgia means MUSCLE PAIN. I do NOT have muscle pain. It seems to be the one tissue in my body that does NOT hurt. Nerves? YES. Joints? YES!!! He did the press test that I’ve had so many times before. I do not meet the criteria and he shrugged that off, mentioning that not everyone feels that pain during the test.

He did talk about Drug-Induced Lupus. Have you heard of this? There are three drugs that have higher instances of causing this:
1. Quinidine
2. Hydralazine
3. Procainamide

However, there are “at least 100” that can cause this. Among them are long-term use of antibiotics. The Rheumatologist was floored when he heard I was on them for as long as I was and he dropped his clipboard when I told him the milligrams.

“More than EIGHTEEN MONTHS?” He blinked in disbelief. “That’s common in India! But in a First World Country?” [He is from India].

My problem with the Lupus talk is the fact that I don’t get rashes. That was part of my f**kin’ problem in the FIRST place! NO RASH. Therefore NO LYME TEST.

But? I like that he is thorough and thinking of everything – everything inside and outside the box.

I’ve read more about Drug-Induced Lupus and it seems the symptoms are a pinch different (?) than Systemic Lupus. Here’s info from the Lupus Foundation of America:  http://www.lupus.org/webmodules/webarticlesnet/templates/new_newsroom.aspx?articleid=377&zoneid=8

They took 15 vials of blood from me today. I stared at the lab orders and tried to take it all in and memorize it. Nahhh. I just know there are tests for indicating Sjogren’s and RA, then Lupus. I LOVE that he is thorough.

He asked for my medical history, focusing me on when the joint issues started. I tried to take him through the Lyme issues beginning with hypothyroidism and progressing to neurological. He rushed me through that a bit. I got to the joint stuff and he asked me what my diagnosis looked like and why I was referred to a specialist. He seemed to be stuck on my initial tests being negative. He ultimately said something about “belief systems” and how “chronic lyme is a part of your beliefs system…. is it not? And your doctor’s?” I shook my head and told him I am keeping an open mind.

Yeah. I B.S.’ed him a little. I am done with being dismissed just because I don’t believe my Lyme Disease has been entirely eradicated. Yeah. I was on Ceftin for months and months and months. If it was to work, wouldn’t it have worked in the first place? Maybe it did SOMETHING. Maybe it simply kept pace with their freakin’ replication. And now I’m off of it.

I told him about my Herx reaction when I took antibiotics for strep last year. He nodded and stared at me. Then he asked if I was ever given ____________ for Lyme. I forget the name. Black something? Blackin-something? I said no. He asked if I was sure. I told him very firmly that I had Doxy to start and all that came after that was Ceftin. He said, “Hmmmm. No? It has quinine in it.” I said no, but did tell him I use tonic water for nerve pain – and that it WORKS.

He kept asking if I have an opiate addiction and was perplexed by Low Dose Naltrexone. I explained it is LOW DOSE. I explained I needed it for my nerve pain. That it WORKS.

He seemed to possess one of those airs of the doctor who does NOT like lay people knowing more than he does. I did not explain the Low Dose Naltrexone or its function. Now that I think of it, I don’t know how well I conducted myself in there. I felt like I had to be a bit loose the first time. Have to get to know him.

So 15 vials of blood. I felt very woozy after! He said to call in 7-10 days about the labs and my next appointment is in November. I told him about the 17-day diet and how well I’m doing – except my HANDS and I had to work in south county today so the driving/steering was painful and I had to pry my hands open after [typing isn’t bothering me but handwriting is intolerable]. He said for now we will not treat me with anything. If I’m doing alright then we won’t rock the boat. Agreed.

An interesting aside with the 17-Day diet. Last night I had the tiniest bit of spaghetti – my first carbohydrate in 20 days. I was exhausted. The fatigue hit me and I fell stone-cold asleep on the couch. Felt a bit foggy today: gradually the fog lifted in layers. Maybe I do have a food allergy/sensitivity of some kind.

Herx Reaction & Lyme Treatment

You’re feeling BAD. Sore knees, nerve pain, headaches, fatigue, muscle weakness, dizziness, malaise …. all of it. You can hardly move.

Then you’re TREATED for it! With dull optimism, you gimp into the pharmacy and get the ‘script. You get home and take one. The next day, you take another, then later you take another …..And … you feel worse. You didn’t think it was possible, but your body hit rock bottom and grabbed a shovel and kept digging.

So you want to stop the antibiotics. You want to stop whatever protocol you’re on. Don’t you? Of course you do.

*** And if you’re on antibiotics, it might be wise to ensure this is not an allergic reaction. If your symptoms are out of control, then go to the ER to make sure this isn’t serious. ****

And if it’s not an allergy… then ….

What is happening is a GOOD thing. That extra pain. That comatose-caliber exhaustion. That inflammation. That weakness. That “wanna curl up into a ball and DIE” feeling. It’s called the Jarisch- Herxheimer Reaction, and sometimes simply the Herxheimer Reaction, shortened to the peppier nickname “Herx.”

Lyme is caused by a spirochetal bacteria. Another such bacteria is syphillis. In the 1800’s, two separate dermatologists noted syphillis patients getting worse before they got better. The bacteria releases toxins and the human body can’t detoxify quickly enough, hence an autoimmune response, hence lots of pain (inflammation) and exhaustion.

The bacteria that causes lyme disease can mask their own antigens and our immune systems don’t always detect it. Once it does detect it, the inflammation starts and the pain and fatigue start because the immune system has been alerted and is now fighting the infection. The bacteria then alters its antigens and is disguised again.

The Herx reaction may be worsened when the bacteria reproduce – there are growth spurts every 3-4 weeks (sometimes 6 weeks). A long course of treatment may result in several Herx reactions, and may be spread out during the replication.

It is also important to continue treatment before, during and after the Herx reaction (and not everyone gets them, particularly if the disease hasn’t progressed far enough and the patient isn’t as inundated with spirochetes). Many people have lyme relapses because they don’t finish their antibiotics. Many more may have chronic lyme disease because of not finishing their protocols.

I know there have been times I’ve taken breaks from my antibiotics. I just went off the salt protocol because my Herx reaction was overwhelming.

How long a Herx reaction lasts seems to follow with how long you’ve been sick, how sick you are, how ingrained the bacteria is in you, etc. It can last for a few hours, a few days or a few weeks [gulp].

There are things we can do to get through the Herx Reaction:

1. WATER , water, water – I’m guilty as HELL of not drinking enough. I love diet soda. I love coffee. Water just makes me pee and it seems like it doesn’t sustain the moisture in my mouth the way carbonated things do. But this is the key in EVERY article I’ve read and in EVERY person I’ve spoken to about the subject. If you do nothing else, do this. And make sure it’s 2-3 quarts/day during treatment.

2. Epsom Salts – toss this in a bath. The bath will make you feel better, even if marginally, and the salts will help extract toxins from your skin

3. Milk Thistle – this is a supplement that supports liver function

4. Peppermint Oil – this is reputed to quel nausea and to help with headaches. Sniffing it helps.

5. Peppermint Tea – see above

6. Nattokinnase – a supplement that is reputed to help cleanse the blood (*Note – it’s made with soy. Don’t take it if you’re allergic*)

7. Vegetables – dark, leafy greens are supposed to be the best and most antimicrobial

8. Fruits – makes your liver’s job easier than eating junk food and lots of chemicals

9. Cut back on sugar – mehhhh. They say that Borrelia burgdorferi LOVE feasting on sugar … hmmmm. I don’t even want to think I make them happy.

10. Cut back on caffeine – MEHHHH! I don’t want to. They say that they get what we get and this makes them more active. It may also aggravate some of the symptoms. Mehhhhhh! Who can cut back on caffeine when they’re exhausted?! I guess if the pain is great enough, I will.

11. Benadryl – they say this is good if you get a rash. I’ve read it can be helpful even if you don’t have a rash! However, if you’re prone to feeling tired on Benadryl then you might find it exasperates the symptoms of the Herx Reaction

12. Alka Seltzer Gold – they say this can bring more alkaline to your blood and may be beneficial

Armed with this new information I’ve researched (and relayed to you), I’m going to try the salt and vitamin c protocol again!

*** By all means, stick to your treatment. Follow medical advice. Don’t stop doing something if it’s clearly working! Loved ones are going to HATE seeing you doing badly. They are going to wring their hands in despair and they are going to want to FIX this for you. They might recommend you stop treatment. Keep your eye on the ball. Remember they are good intentioned. Also remember that there is a deplorable infection in your body and it’s dying. Keep doing what you’re doing. Have a funeral for the little varmints. Do something funny. Visualize their die-off. Revel in it. ***

So Long, Ceftin. Sooo Long.

So long, ceftin – goodbye.
So long, ceftin – so long as in duration.

At first it was Doxycycline. 3 weeks? 4 weeks? I didn’t mind it. They say to stay out of the sun and in the shade I developed a radiant tan. It even had a peachy hue to it. I was glowing. I never felt worse, never looked better. People were complimenting me left and right. Some wise ass even asked if I was pregnant, adding “you’re GLOWING.”

Doxy got rid of the heart murmurs and the breathing maladies that woke me up at night gasping for air, trying to play “catch up” with my own lungs. I thirsted for oxygen, sitting bolt upright in bed in the dark. I KNEW I had stopped breathing. I knew it. How terrifying is that? The darkness, the stillness, the quiet, the not breathing was like death. Just a fraction of a microsecond of death. Doxycycline even alleviated (but didn’t cure) the meningitis headaches that felt like a long cold steel screw twisting relentlessly into my skull and making my neck hurt in a new and unusual and indescribable way.

Many of the lyme symptoms are sensations I can’t even put into words. They simply aren’t akin to anything else.

Then she put me on Ceftin. I believe it was three months. I saw the specialist and she urged me to continue. This started in the summer of 2008. I went off of it in November of 2010.

It wasn’t all at once, ‘mind you. Three months here. Six months there. Increased dosage here, decreased dosage there.

Lyme disease made me constipated. At the worst, it hurt to walk and my pants were all tight. I felt like I was pregnant and the baby was starting to descend, resting squarely on my butt. I devoured laxatives and stool softeners, producing little results.

The antibiotics literature that came stapled to the pharmacy bag promised me diarhea. Oh, that sounded exquisite. At best, I was “regular” when first starting an antibiotic regimen. Then my body would adjust and the constipation would come back.

Dr. H. recommended “Probiotics.” Another name for this is “Acidophilus.” Basically it contains the active cultures found in common containers of yogurt. I found myself mouthing palmfuls of them. The chewable strawberry flavored ones made me feel better emotionally. They took a few extra moments to consume. It felt more like a proactive activity than simply swallowing some capsules. Chalky strawberry goodness. Yummy.

Some of the higher doses of Ceftin made me “nervous.” I was jittery mostly at night, in the same way a child instantly becomes when the sun goes down. Shadows at the end of the hall seemed more daunting. A creak in a floorboard could alarm me into hours of insomnia. A nightlight became necessary.

Just when I thought I was really going insane, the nervousness ebbed. Mercifully.

I lost track of the collective months when I hit about 18. A year and a half.

It takes me some months to get rid of the bloating, to purge myself of the water, after going off Ceftin. I have googled this and it doesn’t appear to be a symptom. For me, it’s how my body reacts to it.

The last time I was on it, I was tormented with yeast infections. I would kid around with some of my closest friends about taking stock in Monistat and feign somberness when I talked about insider info and trading and wondering if it’s simply unethical or actually illegal for me to suggest they do that.

Taking myself off of the Ceftin, I explained to Dr. H. that I simply couldn’t afford $18 every ten days. She conceded it was probably not working well for me.

At this point my primary care doctor doesn’t want me on any more antibiotics. During my time on them, I had lots of labs to ensure my liver and kidney function was up to snuff. However …. however …. it’s not good for me.

Some doctors just WON’T treat patients with lyme disease with antibiotics for more than a certain period – some (like Dr. H) keep using antibiotics until the symptoms are resolved. Some are probably somewhere in the middle of the spectrum. No one seems to have a concensus as to what’s proper treatment.

Dr. H asked if I had any left and I said I did. She told me if a tick bites me, to take two. Dr. H added that their “shelf life” is like a year (supposedly) but I could keep them on hand for 3 years? Or did she say 5? At any rate, I have time.

Antibiotics Used to Treat Gonnorhea for $200, Alex.

When I went on Doxycycline, I went home and goggled it. I always do this. It said it’s used to treat this, that, the other thing, and gonnorhea. I laughed.

After she prescribed Ceftin, I went home and googled it. I always do this! It said it’s used to treat this, that, the other thing and gonnorhea. Now I was on a higher dose, taken more frequently, for a duration of 3 months.

I guess this is why the pharmacist always coughs the word “slut” when I come in to pick up my meds.

Or maybe I’m lying.

You Put the Lyme In the Coconut…

And the doctor wasn’t impressed with my halting the steroids. She did, however, concede that I should have had some relief in the arthritis symptoms if I had RA.

She asked me about the symptoms and what changed after the Doxycycline. I told her none. My lip started to tremble. This was exhausting.

Dr. C. talked about the heart flutters and the breathing. I nodded. She was right. Those were resolved.

‘Now what about the other bazillion symptoms?’ I thought bitterly.

My lyme test was negative, true enough. She said that they are always giving false negatives. Dr. C. mentioned Dr. H., an Infectious Disease Specialist out of town. Dr. C. said that she usually prescribes Ceftin and gave me the ‘script and the referral. It would be three months before I would see Dr. H.

She forewarned me that the Ceftin might worsen my symptoms – when the bacteria dies off, it emits toxins that make the symptoms worse. Right she was.

Doctor, Doctor, Give Me the News….

I fired a doctor who said I was depressed. I found another doctor who wanted to give me Ativan for my symptoms; he didn’t come

OUT

and tell me it was “in my head.” But I know Ativan is an anxiety med. He didn’t say that it’s used for other things or anything. Just that it would help.

I also told this quack that I’m a recovering alcoholic and that taking something from the Benzo family would be …. less than desirable. Especially since I had a love affair with Valium when I was 14. He chuckled and looked at me like, “Isn’t she cute?”

He said they use it in detoxes for alcoholics all the time (here I was sober for several years already … 4 maybe?). I took the piece of paper, the prescription, to shut him up. I threw it in my glove compartment and threw it out when I got home.

Now what?!

I switched doctors again. My mom was lamenting for months that I didn’t have a smart doctor like hers. So? I switched to hers.

I have difficulty stating how badly I feel, so mom came with me and did the talking. At this time, my heart was flipping out. I woke up at night not breathing –

that

was scary. My knees were becoming arthritic and I was scared to cross the street because it would take me so long.

I had a heart to heart talk with close family members about what would happen to my son …. what would happen IF ….

Yeah. I thought I was going to die. The heart stuff was nothing I’d ever experienced (I was an anorexic when I was younger so heart palpitations aren’t foreign to me. This was something else entirely.). The breathing terrified me. What if I didn’t wake up when it happened? I’d sit up, gasping for air with my heart rattling in the darkness.

Finally I saw Dr. C. She was sympathetic and seemed to genuinely believe me. This was new. She felt my knees and agreed they were swollen. I don’t remember what she gave me, but she gave me something and asked me to return in a week.

And there were scads of blood tests: Rheumatoid Arthritis, Lupus, Vitamin Deficiencies ….. Lyme Disease. I sat there with the needle in my arm as the lady switched vial after vial after vial. I asked her if they were conspiring to sell them on the black market.

I tried to keep doing things with my son and it was April 2008. I took him for a walk in the woods. Bundled up in layers, we took a walk on a dirt path with a large wake between us and the trees. I trudged along, my knees screaming in pain. I kept my hands in my pockets because the weight of my arms felt such a burden to my shoulders; it was like carrying 50 lb weights all day with no relief. The sun was warm, a benign breeze filtering fresh air over us. In the shade were residual snow piles.

The next morning, my butt was itchy. ITCHY. My fingertips wandered under the elastic waist of my pajamas and scratched furiously. There was a bump. A big, scabby bump. I had my mom look at it.

“It’s a spider bite,” she informed me. With tweezers in hand, she picked at it. “See? The spider’s still here. He’s small….”

She presented the insectile carcass to me, and I saw a tick. A deer tick. We stashed it in a Ziploc and headed back to the doctor.

She chose to treat me for lyme disease after hearing that I walked in the woods ALL the time. Dr. C. didn’t think this particular tick was to be incriminated in what’s happening to me, obviously. My symptoms predated this nasty little guy by who knows how long. She declined to test him. It was obviously irrelevant. But she had questions.

My answers:
No, there was no other tick that I recalled. No, there was no bull’s eye rash. No, there was no rash at all. No, I don’t recall any initial flu symptoms. No, I don’t remember when this started – but the worst of it seemed to be last summer.

And so I was on Doxycycline. Three weeks, twice a day.