200mg of doxy for three weeks will not cure disseminated Lyme (> 4 months). The PICC line is a good thing. I presume your doc is giving you IV Rocephin even though you've tested negative? That is a very good thing, and rare from an ID doc.
I also encourage you to find a LLMD, a Lyme Literate Medical Doctor as we call them. It isn't an official title, and most of them are general practitioners. They are willing to go beyond the restrictive IDSA guidelines and treat you until you are well.
If you'd like to find one, let us know. You can also contact ILADS for names, or get in touch with a local Lyme support group. They'll know who in your area is good.
Jeff, I'm glad you're getting some medical attention, but if you've been infected for longer than a couple of weeks, doxy might not be enough -- after a time, the Lyme bacteria form protective covers (cysts) for themselves to hide from antibiotics, and then when the treatment is over, the bacteria come out again to make mischief.
I'm not medically trained, but I think in your situation I personally would take the meds, and also keep looking for a doc who thinks bigger thoughts about Lyme. If the doxy works, then you're good to go. If you're still sick after the doxy, then seeing another doc is what I'd do.
Hang in there --
Hi its Jeff from RI i sit here in South County Hospital being seen by a infectious disease expert who treats lime my test have been comming out negative since last July, I have all the symptoms burnig feet and hamstrings prickling sensations on face and head fatigue and chills without fever. Im so frusturated been goin through the doc runaround for month Im on 200 miligrams of doxy for about 3 weeks, could i be herxing? Help , work wants me back in about 10 days and im sitting here with a pic line inserted in my arm. Any suggestions? Im desparate Thank You Jeff Roy
it does sound like some symptoms I get, I am undiagnosed aswell, My test a few years back came up negative, anyway as you will see from the other posts you may have hit a Bulls Eye! (sorry for the pun)
I'm just revisiting this since I thought of another example that hits me often:
My lap top, if I actually place it on my lap, makes my legs go haywire.
I get enhanced paresthesias, twitching, and heavy feelings. It is very reproducible and reversible, but the longer I keep the laptop in place, the worse it can get and the longer it can take to recover.
I first read about heat intolerance in the context of MS, but I think it happens in other illnesses as well. I don't think all Lyme patients have this, but it certainly seems within the wide range of problems we can have.
Hi! I have Cold intollerance, and it can be really bad, but my son who also has Lyme is the exact oppisite.
He has a terrible time when it gets hot! We live in Texas ans in the summer time, he is miserable. Also, if it gets hot in the house, this messes with his ability to cope with things. He gets really agitated and almost angry!
I have him put a cold wash cloth around his neck and sometimes an ice pack as well, this seems to cool off his head and he feels better!
YES! Heat intolerance. If I have my sunroof open and the sun is beating down on my arm, it prickles like a cactus. I quit taking hot baths, completely. The hot tub is a nightmare. If I get cold, my extremities are difficult to warm up too though.
Your symptoms sound very similar to mine. I also have all normal tests. I have never tested positive for lyme but I did have the bullseye rash 17 years ago. This is when my problems first started. I respond very well to antibiotics. I think it's important to have these kind of symptoms evaluated by a physician who knows about the disease.
Hello, welcome to Lymeland. There is a lot of confusion among us, among our doctors, and in the medical world generally about diagnosing Lyme and its coinfections accurately.
You say above: "I have been tested for both MS and lyme - normal brain mri's and normal ELISA and Western Blot tests for Lyme. Now where do I turn? Does it sound like my heat intolerance is a little extreme for Lyme?"
Testing for Lyme is not precise, and the diagnose should be done by a Lyme Literate Medical Doctor ("LLMD"), which is not a qualification, but a description of an MD who is interested in and broad-minded about the mystery that is Lyme. Other drs can order ELISA and Western Blot and believe that they have done everything reasonable to diagnose or rule out Lyme, but an LLMD goes beyond that and diagnoses according to symptoms and medical history, not just ELISA and W. Blot, and also tests through Igenex, a lab that looks for and reports in a more detailed fashion than the other two tests and the labs that run those tests.
The trick is finding an LLMD, because some areas don't have many. Lyme has several unrelated diseases that often are carried by the same tick that carries Lyme, so it's important to be tested for all of those too, and an LLMD will do that. The combination of Lyme and one or more coinfections considerably confuses the symptoms, so it's important to have a dr who appreciates and understands that aspect.
Lyme and its coinfections are treatable and curable, while my understanding of MS is that it is manageable, but not treatable/curable, so determining whether or not you have Lyme is important to do: the longer Lyme goes untreated, the more damage it does and the harder it is to cure. There are people on this forum who believe they have probably had Lyme for decades, and others of us for only a few years, but we are all here trying to help each other. If we can help you too, please let us know. Welcome!
Hi ! I'm happy that you are in the lyme forum, because lyme disease is something that I think you should consider ruling out. Of course lyme testing is tricky.. often patients who have lyme disease will have a negative lyme test. Often, more than once. Also, you may also want to check out the symptoms for fibro and/or CFS. All of these conditions (MS, lyme, fibro, etc.) are diseases (or "syndromes") that affect the central nervous system. They are so much all very alike. Here is a link to a list of symptoms that are common in fibromyalgia and CFS patients:
I don't do well with quick changes in temperature, hot to cold, or cold to hot. Makes me shaky and weak feeling. Same thing if I exert a lot of energy at once, like dashing to catch a bus.
It feels like an episodic version of the fatigue I had so badly before treatment began, only now it's mostly when I exert quickly, like slamming down on the gas pedal and flooding the engine -- lots of effort, no energy.
I know! There are so many symptoms that don't make the official "symptom lists" for many diseases. It is comforting to hear first hand that others experience the same thing.
My symptoms are neurological: tingling, electrical shocks, burning pains, muscle aches, weakness and extreme muscle fatigue. I shake a lot when I overdo it. Even normal housework makes me shaky and weak. I also have slight urinary incontinence and some vision problems: blurry and color dimness.
"I always thought that heat intolerance was an MS thing."
I love the internet because we are all finding out that many of us have overlapping and additional symptoms that don't meet the criteria. Lyme disease itself can have over 200 symptoms !
What are your symptoms ?
Yes. The heat has been getting to me for several years now. I though I just couldn't tolerate it due to getting older (I am only 41, though).
I have had undiagnosed Lyme for nearly 15 years, so maybe tha is it.
I also have Autonomic Dysfunction related to Lyme and I think it is those symptoms that are intensified.
I always thought that heat intolerance was an MS thing. I am incredible heat intolerant. If I go in the sun or have a hot shower - even just a few minutes of exposure - I got weak and my muscles feel tight and painful. My muscle control is terrible. I tingle too. I have not been able to exercise at all due to this. (I am a former marathon runner and mountaineer).
I have been tested for both MS and lyme - normal brain mri's and normal ELISA and Western Blot tests for Lyme.
Now where do I turn?
Does it sound like my heat intolerance is a little extreme for Lyme?
not heat, but cold intolerance
chills come on late afternoon
Haven't noticed a heat intolerance really. Like the past few days have been much warmer and we've been outside and acutally I prefer the heat. But... I have noticed several times when I get out of the shower I feel weaker. So I don't know if it is the kind of heat or what.
Forgot to say, my pain and stiffness have improved though since it warmed up.
I've never tolerated heat very well. I am not sure if I am any worse now.
I have the heat intolerance, especially when I first started treatment and I also had photophobia then as well.
The heat can instantly enhance some sensory symptoms in me. For example, when I cook, if I catch some steam to the face, my face immediately tingles strongly, then subsides as the heat dissipates.
Ongoing heat all over, like from hot temperatures or a too hot shower, bring on feelings of malaise and fatigue and often also stomach aches.
For me, the cold usually causes more leg cramps and roving pains.
I dont do too well in the heat but not as bad as the cold I suffer if the temperature drops my hands are freezing when everyone elses are normal I get Raynauds aswell when they get too cold, the warmer weather doe smake my hives worse.not so the shower but I dont run it hot.
could it be that your body needs time to adjust to the 'warmer weather' - I have noticed feeling more fatigue and heaviness - when I spend time outside on very warm days - it does tend to get less noticable as the 'summer' goes on - atleast that was the pattern last year.
I defintely feel more ill as the day progresses. Since I feel fatigued and my skin tends to burn already, the heat just amplifies the hot sensation. My skin also gets itchy and irritated so between that and the heat, I avoid hot showers.