Did you clear with your docs to wait to take the plaquenil?
I would. You've got a complex situation going on, and there may be a specific reason for you to take it as prescribed, both as to dose and timing.
Are you still on Doxy (sorry...can't remember!)? If so, it sounds like it's working. That's great that your lymph system is draining! I hope you feel some relief shortly.
Doxy is an intracellular antibiotic which can act on Bartonella as well as Lyme. Bartonella herxes can be nasty in some people. Remember that a herx is a reaction to a bacterial die off, whether it's due to inflammation from the immune system stepping up its attack or whether it's from toxins released en masse from dying bugs.
Bartonella can cause a variety of GI issues, so a die off there could also be the source of your GI upset. The nerve discomfort can be from either Lyme or Bart or both. I've had nausea and dizziness at various times in my treatment with different kinds of meds for Lyme, Bart, Babesia, and yeast.
I think it's a good idea to hold off any any new meds at this point, too. Also, do some research into detoxing agents to see what might work for you. Chlorella helped me, but it has to be taken with food. It can cause stomach upset, although I've never experienced it. Some say activated charcoal is great. Epsom salt baths help.
My doc also recommends Quercetin, a supplement that might help. (It's a flavonoid.) I took alka seltzer gold, which has magnesium in it, for my GI upset early in my treatment. It doesn't resolve it, but it did ease my discomfort. I took it for about 3 months.
Hang in there! This is part of the process of treating Lyme and coinfections. When do you see the LLMD?
The LLMD was hesitant about the plaquenil anyway as was my intern and since I was already feeling bad i thought I should just wait a little longer at least for biopsy results. I didn't ask my LLMD, but I know she's more than happy with the decision as she really wanted me to detox before she added any meds to my system.
I'm doing detox with burbur. It's not really doing anything though. I've tried the charcoal before with no relief, but maybe since the lymph nodes are draining I should try again so that the bugs in the drainage can be absorbed. Couldn't hurt, I guess.
I am still on doxy, I think today is day #40! I have felt considerably worse the whole time. Everything I've experienced including this new flu-like rage are symptoms that I have experience on a continual 3-4 (or so, my journaling has been pretty bad) week cycle since my transfusion a year ago. The cycles of symptom flare ups got more and more intense on their own over the year and then with the doxy I am pretty much useless. I don't know if it was a natural progression or if it was magnified by the doxy, but my goodness it's extreme!
I'm glad my lymph nodes are releasing all of that awful pressure, but whatever let loose feels like it poisoning my system. Double vision came back as well. It is only in the right eye and it is vertical double vision. My sweet husband came home, just in time for me to curl up in bed and pray hold tight as i felt like clawing out of my own body. the weakness and shaking seems better after an hour rest.
My LLMD wanted to see me a month after last Wednesday's (?) appt with her and just said to call her if I was having an adverse reaction to the plaqenil.
-- Maybe doxy just isn't the right med for you. There are options, as I recall.
-- Maybe it's not [all] caused by the doxy. A lot of this may be the crud that's leaving your system as the lymph drainage continues.
What does your doc say about the 3-4 week cycles you go through? Sounds like an infection to me, which one, I don't know.
... and leila -- I really admire your grit in the face of all you are going through.
That said, brave is good, but don't be a hero beyond what you can deal with. Tell the doc. They gauge how bad off someone is by how much complaining they hear. Remember to give them the data.
It sounds like just a miserable herx. All those bugs that were hiding out in your lymph system and are now flooding out into the rest of your body.
You might try chlorella. It is a "super food" and provides some nutritional benefits besides its detoxing capability. Just try to avoid chlorella from China. Thanks to bad air pollution, is more contaminated than chlorella from Japan or Taiwan or Korea. I couldn't find it at the pharmacy. I had to order it online.
I can't remember if you've talked about any diet changes, but avoiding sugar and gluten will help reduce inflammation, which you're probably loaded with. Eat organic, whole foods as much as you can. Drink lots of water. Take warm baths or showers to keep your skin clean. Our bodies will even secrete toxins through our skin. Avoid personal care products with lots of chemicals that can put an additional detoxing burden on your body.
I'm so sorry you're hurtin'. I am still amazed at these tick borne infections that make you sicker AFTER you start killing them.
Many women (I assume Lei is female?) mention a cycle that approximates (or influenced by) their menstrual cycle.
Dr. Marylynn Barkley was one of the first to study this. (She was/is? employed at UCDavis in CA).
Here is an excerpt from the LymeTimes. LT archives don't go back that far but I found this somewhere else. I hope Phyllis doesn't mind. :)
How female hormones may affect symptoms ~ See page 31
THE LYME TIMES
Publication of the LymeDisease Resource Center
Marylynn Barkley, MD. PhD, UC
Davis Section of Neurobiology,
Physiology & Behavior,
a study on the relation of female
hormones to the waxing and waning of
Lyme disease symptoms. She has
observed an intensification of night
sweats (diaphoresis) in women with
Lyme disease immediately before and
during the menses. At the end of the menstrual cycle,
there is a precipitous decline in ovarian
steroid hormones which triggers the
shedding of the uterine lining. During
this period, recognition of Borrelia
antigen by the Lyme Urine Antigen
Test (LUAT) also reaches a peak, and
cytokine levels are above normal.
Night sweats are thought to reflect
activation of the immune system and
have historically been used to moitor
infections in patients with tuberculosis,
malaria, and other diseases. Dr.
Barkley discussed a patient whose
classical Lyme disease symptoms were
not recogni/.ed until 18 months after an
initial flulike illness. The patient.
initially seronegative, became positive
after an empiric trial of antibiotic
therapy. She experienced regularly
occurring night sweats which were
measured according to an objective
scale for intensity (level 4: most
intense, IOcc fluid could be wrung out
of garment, to level 1: only front of
garment was wet).
Data recorded over a two-year
period showed intensification of night
sweats (more level 4events) in a cyclic
pattern coinciding with the decline of
ovarian hormones and the onset of the
menses. Over time the intensity of the
night sweats lessened, suggesting
response to therapy.
Continuing her study with another
patient. Dr. Barkeley wanted to
discover whether there was an
objective relationship between
progestin levels and Bb antigen
activity. Using the LUAT. she
discovered an increased recognition of
Bb antigen as progesterone levels fell.
In a further study of 26 women, 21
reported night sweats, and of those
who kept records, the most intense
night sweats were in association with
menstruation. She also discovered a
significant correlation with intensifica-
tion of Lyme disease symptomatology
(arthralgia, myalgia, cognitive deficits,
fatigue) around the same time.
Dr. Barkeley concluded that there
is an interval of increased immune
activity during several days before and
after the onset of menses. She is
assuming that the night sweat activity
is proportional to the spirochete
abundance. She speculates that the
increase in immune response kills an
increased number of spirochetes during
this period, which leads to the intensi-
fied symptomatology and the increased
shedding of antigen.
The monthly (roughly) cycle doesn't really adhere to my menstral cycle. We thought that in the beginning, but my female cycle is very regular, whereas this cycle is not. Sometimes it's shorter than a month sometimes longer. The cycle of flare ups then lead to all of the rheum testing to which I am neg (however, I've read that not everybody tests positive, but not everybody tests positive for Lyme... And round and round the circle goes). Then I came across what's his faces (starts with a B) symptom checklist and AHA there it was 4-6 week symptoms cycles (if I remember correctly). This was hours after reading my not-so-neg labcorp Lyme results. The LLMD didn't really have anything to add about the cycle thing, except that treating Lyme is a lot like playing whack-a-mole. You treat one and then a coinfection pops up.
I think I am in agreement that the doxy isn't doing much, but if I don't give it the 2 months I'll never know. If things get worse on this 2nd month/cycle, than the first then maybe I can rule out herx??? The damn questions and uncertainty of all of this is ridicous.
As for my grit, it's not so much bravery as it is I have no choice. I've seen dozens of doctors and had tests and now surgery and visited the ER. It's either have a couple of people in white coats look at me with impatience and assume I'm just crazy or hold on to the seat of my pants. I'll try the LLMD, but I'm not sure she's gonna have a solution either. I just saw her on Wednesday.
Thanks for the chlorella suggestion. I'll have my husband check for it. He did being me home some dandelion root today which is supposed to work wonders on the lymph nodes. I don't really have any faith in this vitamin and herbal stuff anymore to be honest though.
Sorry, I'm cranky... I am just so very over this.
Note to self: a couple of weeks ago I was begging for relief from the lymph pressure. Good or bad, you got your wish.
I had serious flu-like symptoms while on Rocephin. Turned into pneumonia and lasted weeks. Had to go on a nebulizer, which helped a lot. No one else got sick, so we chalked it up to a herx. So far, I've never had a herx that bad with all the other meds I've taken since. I'm sorry you're going through this. Really *****. Hope you get through this quickly!
Here we GOOOOO.... Just got a call from my intern! Biopsy is as follows:
Smears for infections: negative
Reactive node most likely due to vasculitis
He is going to consult with other doctors, but is talking STEROIDS, ASAP!
Holy hell! What am I supposed to think and do now?
I just researched vasculitis and it's not good, you guys.
If it was Lyme it would have shown, right?
I am a mess:(
Lei---- I can understand why you're 'a mess' and who wouldn't be?
But let me just postulate a few things right? "Postulate" not diagnose, right?
Reactive node: "most likely". Not definitely! Of course it could be vasculitis, but not known definitely.
Here's what one Internet doctor in another forum said. (Yeah, I know! But it sounds completely reasonable to me)
"So what is a "reactive lymph node". This is what a pathologist calls a lymph node which has expanded to help fight off an infection. Such a lymph node is "reacting" to the infection. It is for that reason that we call such lymph nodes "reactive".
So, you have an infection. Lyme. You might also have another co-morbid infection that isn't Lyme or a tick borne one. Don't know. Either does the pathologist. The path. guy just reports. Doesn't make assumptions or shouldn't. The vasculitis is probably a good 'guess' but only a 'guess. Hence the 'most likely'.
Reactive nodes DO wax and wane. And that probably depends on what's causing them. Some may never 'wane' if the infection remains. How long have you had it?
If you've read Wiki, Mayo, Johns Hopkins et al about vasculitis----- it's totally scary. But many people have lupus, have Wegener's, all the other nasty sounding diseases and can control them. They weren't malignant. Whew!
If it were my path. report I'd ask for these tests:
"Laboratory tests of blood or body fluids are performed for patients with active vasculitis. Their results will generally show signs of inflammation in the body, such as increased erythrocyte sedimentation rate (ESR), elevated C-reactive protein (CRP), anemia, increased white blood cell count and eosinophilia. Other possible findings are elevated antineutrophil cytoplasmic antibody (ANCA) levels and hematuria."
Or you might have already had them which led to the decision for the biopsy. Do you keep all your lab tests reports? (PLEASE say you do!!)
What say they?
Another Internet diagnosis that sounds completely plausible to me. (Of course I don't know/can't remember your history)
"A reactive lymph node is a description of the lymph nodes actual function. The lymph nodes all over the body are designed to drain virus and bacterial threats to the body into the lymph nodes. The lymph nodes capture the offending material and surround it to isolate it from the body. When the offending material is tremendous, it will cause the lymph node to swell which is a reaction. If the lymph system is healthy the lymph system will adjust and as the bacteria is dissolved the swelling node will go back to normal. If the node does not return to complete normal, it is sometimes discovered by a person who goes to the doctor to have it checked and biopsied. If the node is cancerous, then this will show up in the biopsy report, if it is merely doing its job to remove threats to the body it is called a reactive node. Some nodes are benign, meaning some type of tumor was attempting to form but the immune system defeated the cancerous cells. The main thing is that if the diagnosis is reactive node. This is good news."
I hope that these notes can help you start 'thinking' and not 'reacting' (as I would have done if it were MY path. report. LOL)
As I said, vasculitis is not a desirable problem. I would have a gazillion questions lined up to ask my doctor. Steroids---- if it turned out to be some really serious----- then 'maybe'. But without more knowledge, maybe more testing, ------ ???
You asked "If it was Lyme it would have shown, right? "
I don't know but I don't think so. Even if 'they' looked for the presence of a spirochete (and were they instructed to? and did they honor that?) spirochetes hide. A biopsy is a very small sample. A chete could be right next to the tissue biopsied and they wouldn't find it. I don't even know if they like hanging out in lymph nodes.
Hang in there! (how lame is THAT?)
I would be careful with steroids if it is Lyme I know steriods and lyme are a big no no. But you need to do what's best for you. I have done some research and it appears, Corticosteroids suppress the immune system allowing lyme to flourish. With this all said I don't know treatments for vasculiis. I'd talk to your lyme dr and see what they say. Praying you feel better soon.
The biopsy pathology report does sound good.
About steroids: they are not a good thing to take if you have a bacterial infection, which Lyme is.
Steroids suppress the immune system, and if your immune system goes on vacation, there's no opposition to the Lyme bacteria.
Docs who do not take Lyme seriously don't consider 'what if' the patient really does have a bacterial infection. I personally would not take steroids if I had Lyme without my Lyme doc okaying it.
PS vasculitis means inflammation of the vascular system -- meaning one or more blood vessels. Might or might not be significant, be sure to talk to the doc before assuming it's significant.
Phew! Trying to get a grip. I hate google! I knew I shouldn't have googled it, but some desperate part of me thought "maybe it's not that bad".
I am sobbing and not bothering my husband who is playing with the kids right now, as I "rest".
So much info to relay...
WBC has only been low and low normal over the past year.
ANA low positive 1:80 speckled, was told hashi antibodies could cause that result
SED rate normal (done 3 different times over the last year)
RDW always high, but anemia test normal (except during last year's pregnancy)
High blood calcium (only slightly) off and on for a year
All other tests normal
CT scan and spinal MRI only showed shotty adenopathy (at large nodes), chronic sinusitis, and minor osteodenopathy (sp? Phone keeps trying to correct sp) of C spine, no lesions
Doc is saying reactive node most likely due to autoimmune influence rather than infection, but as you see I test neg for pretty much everything except for the p23 Lyme band and thyroid antibodies. Vasculitis was not just suspected due to node biopsy, but (accidental) clinical findings of enlarged left axiallary artery and left coratid also enlarging of small veins in left hand and minor petechiae here and there. I have most of my records, but not all.
Deep breath... Thanks for 'typing' me through this... I just am... crushed. After the sono detected I had an enlarged axiallary artery, I took it upon myself to set up an appt with a cardiologist. I am guessing he should provide some sort of info?
PS- I was smiling and relieved that it wasn't a malignant finding when I got off of the phone with him. I don't want you guys to think that I am a nancy negative and wasn't relieved with the "reactive" news. Most definitely, I was great full. I was fine... until I googled.
Umm.. I am "grateful", is what I meant (sorry about my phone auto-typing
If you've felt like this since going on doxy, it could be the doxy causing the problem, I felt appallingly ill on the stuff and my doc said that is not very unusual. It was the drug itself, not a herx.
I switched to Minocycline instead and felt much better on that.
I also felt worse on doxy. I'm on minocycline right now. I'll keep you posted on my journey with mino. Praying you figure out what's going on.
I had to skim everything because my vision is not good so excuse me in advance if I repeat things. There is a definite cyclic herx that I got and others get a the start of doxy or other treatments.
Flu like symptoms are common. I was told I had vasculitis, MS,Lupus and other ailments, all at the same time , I told the Tx doctors that i should be written up in a medical journal because what are the chances for someone to have all these things wrong a the same time. I was given steroids. I wound up in the hospital on a breathing tube from the steroids.
I was in a state that did not believe in Lyme but was lucky enough to know a nurse in another state who had Lyme and she guided me out of danger. I was at a point that I had to go against the doctor since he was killing me with his disbeliefs.
I stopped taking steroids and improved a great deal. Then I moved to Fl and found an LLMD and things are even better now.
"Doc is saying reactive node most likely due to autoimmune influence rather than infection"
I'm not the one to say there isn't an autoimmune influence---------but that's what doctors will say if they don't 'look for' an infection they don't want to find. Lyme. Harsh, I know but not too far a stretch. Almost all IDSA doctors will say that. "If you've taken 30 days of abx and not gotten better, then you must have an 'autoimmune disease'. Sigh.
I just tried to answer my own question about whether spirochetes 'hang out' in lymph nodes. YES, they do! In fact it seems to be one of the favored spots.
Here is an interesting article from UC Davis:
"The bacteria that cause Lyme disease, one of the most important emerging diseases in the United States, appear to hide out in the lymph nodes, triggering a significant immune response, but one that is not strong enough to rout the infection, report researchers at the University of California, Davis."
"“Our findings suggest for the first time that Borrelia burgdorferi, the bacteria that cause Lyme disease in people, dogs and wildlife, have developed a novel strategy for subverting the immune response of the animals they infect,” said Professor Nicole Baumgarth, an authority on immune responses at the UC Davis Center for Comparative Medicine."
“At first it seems counter intuitive that an infectious organism would choose to migrate to the lymph nodes where it would automatically trigger an immune response in the host animal,” Baumgarth said. “But B. burgdorferi have apparently struck an intricate balance that allows the bacteria to both provoke and elude the animal’s immune response.”
Barthold has many PubMed articles on PubMed.
Here's one that might be printed out to present to a doctor not believing in Lyme causing lymphadenopathy.
Lymphadenopathy is a hallmark of acute infection with Borrelia burgdorferi, a tick-borne spirochete and causative agent of Lyme borreliosis."
There are many many more---- I'm collecting them either for you or for general knowledge about lymph involvement and Lyme/TBI diseases.
Lots to say:
Had to go to consult with GI this morning, already scheduled. As it turns out, I am so disgustingly skinny that it is not a hernia, it is my transverse colon that you can actually grab and move about my abdomen from the outside of my thin skin. How gross is that? I am eating so much you guys! Even forcing myself to eat when the pain is so bad that I don't want to. Again, I even drink ensure on top of all of it. It's like my metabolism has gone insane and though I'm sitting still, I metabolize like I am running a marathon. Anyway, it's gross that I can actually grab and move my colon and that it pokes out to say "hi" from time to time, but good news in that I don't need surgery and he was a really great doctor! Even though he is a GI surgeon he was thirsty to learn about all of my problems and really listen and took a great time feeling my abdomen to be sure that there was no further issue. Wonderful, wonderful doc!
I then had an appt set up with cardiogist. He has ordered a ct angiogram. He said that that would give him a great deal of info about what to make of the enlarged arteries and the chest pain. He doesn't believe that there are granulomas due to "vasculitis" per se , as much as just inflammatory reaction, but he wants me to see a vasculitis specialist anyway.
My LLMD just called me and I told her about my intern wanting to put me on steroids:
"Tell him, I said NO! Some get better on steroids and some get much worse. Those who get better are only better bc the steroid is masking their symptoms. Unless you have a familial history of autoimmune disorders then there is a reason behind your body attacking itself. We need to treat the underlying cause."
She said given how bad I feel she wants me to go ahead and try the plaquenil and to call her with updates. I just took it, so we'll see in time.
Now, it's just a matter of which doc to follow blindly. I don't care, i just need to feel better. I quit smoking (just smoked a few a day, anyway) cold turkey yesterday. It was an immediate reaction as soon as he said smoking can cause vasculitis.
My vision is still pretty bad and my chest pain is indescribable. Not my heart, not my lungs, just gosh darn awful. I don't think I slept more than 15 mins without being woken up in pain from it last night. Muscle twitches, weakness, muscles just will not relax no matter what I do, bubble in chest causing pain, constant nasal drip, painful skin like I have the flu/ sunburn, sore throat, squeezing sensation in the abdomen that goes all the way up the esophagus, in the jaw and inner ear., headache, heart skipping a beat/ pausing, low blood pressure, dizziness, brain fog, nausea and vomiting (not often), ringing in ear.
Being on my feet causes a full body ache. After my appt, I could barely keep it together to walk around the grocery store for 30 mins. What the what has happened to me?
PS- Cynkevtay, hope you are feeling better!
Cave, intern consulted with Lyme pathologist at Hopkins (that's all he does, just Lyme and coinfections) and he said that even if I had Lyme, it would not be found in the lymph nodes. To be honest I'm starting to doubt that specific testing for infections was even done. I think the pathologist was examining the node for granulomas and malignancy, but I will ask for report.
To all please bear with me as I not only feel like a tortured mess, but emotionally am a mess as well. I'm at the enough is enough point and am embarrassed by how I fear I might come across. I do not want to be this person and I'm sorry that's the only side of me you get to see.
Of course we'll bear with you! You're suffering! I'm devastated about that.
Can I say I've been right where you are without sounding like I'm ignoring the depths of YOUR despair?
And I'm devastated that you're getting an all too common run around about facts that are well published by reputable authors and groups. Stephen W. Barthold! Who could doubt his findings?
I'm angry enough to print out a few PubMed articles and mail them to him/her/it--- the pathologist at Hopkins.
It's well known that Johns Hopkins is the nest for Lyme denialists. And that pathologist just proved it once again!
I'm angry enough to print out a few PubMed articles and mail them to him/her/it. Except that I know it wouldn't be believed IF even read.
1. "Lymphadenopathy is a hallmark of acute infection with Borrelia burgdorferi, a tick-borne spirochete and causative agent of Lyme borreliosis[...]. The present study demonstrates that extracellular, live spirochetes accumulate in the cortical areas of lymph nodes following infection of mice with either host-adapted, or tick-borne B. burgdorferi and that they, but not inactivated spirochetes, drive the lymphadenopathy"
2. Here's a site with actual pictures of histological slides of lymph nodes with (ready?) TA DA! spirochetes!
3. "They found that when mice were infected with B. burgdorferi, these live spirochetes accumulated in the animals’ lymph nodes. The lymph nodes responded with a strong, rapid accumulation of B cells, white blood cells that produce antibodies to fight infections. Also, the presence of B. burgdorferi caused the destruction of the distinct architecture of the lymph node that usually helps it to function normally."
5. "In the lymphnode of a patient with arthritis and lymphadenitis the spirochetes were localized in and round the blood vessels and in the lymph vessels."
"Diagnosis of Lyme disease by demonstration of spirochetes in tissue biopsies."
[Now, these are mice lymph nodes. Johns Hopkins will say---- oh, no---- those are mice, not human. I'm going to look around for some histological slides from humans! Gotta be here. I may even write Dr. MacDonald to ask where I might find them on the Internet. If you could get YOUR slides sent to a 'good' pathologist they might even find some there. This has got my dander up---- the egregious crap they're saying. (Not that you WILL have chetes in YOUR nodes (we don't know that yet) but to say that they can't be there------ arghhh!!!!]
Given what you're going through, dear, I think you are doing GREAT. Sending all good wishes through the air ~~~~~~~~~~~~~~~~~!
In a disagreement between a good Lyme doc and any other doc, I would (in your situation) lean toward the Lyme doc.
It's not that other docs disagree on the facts -- the other [non-Lyme] docs don't even recognize that IS another point of view.
You hang in there, kiddo. You're doing fine. >hug<
As I mentioned before when I first got very sick all my lymph nodes were swollen in my body. Now maybe half of them.
I was also told I had vasculitis. Mainstream doctors who won't accept Lyme as the answer are going to give you a million diagnoses that they feel will explain your symptoms. I had at least 10 myself.
If you try to figure all that out, you will go nuts. I agree with your LLMD, NO STEROIDS. I was one of those with a bad reaction. I don't even go to the other doctors anymore except the retina specialist who is Lyme literate.
I went through too many years of other doctors and had painful unnecessary tests they wanted just to prove something to them. They always came back
I would lean toward the Lyme doc too. No doubt about it.
Haven't slept more than 3 hrs in 2 nights. I'm exhausted, obviously, but every time I close my eyes and dose off my body jerks myself awake again. I even took a diazepam that I had from when i had some bad panic attacks several years ago. Didn't work! Will try Epsom salt bath later. Also, I have my ct angiogram tomorrow! Super scared about this vasculitis, stuff. Out of all the things I've been scared of and worried about this one takes the cake. I had to force myself to stop reading about it bc it was like tagging myself with an expiration date. Can't believe my doctor was so matter of fact with his diagnosis, if it's as bad as what I read. Seems kinda cruel.
Jackie, mogogal- I will try to stick with my LLMD as best I can. The fear may get the better of me, as I feel like I'm walking a tight rope and all of the docs differing opinions are just distractions. You are both inspirational. Keep pushing me! And thank you!
Cave- your frustration is refreshing to be honest. I would love to have someone with that fire standing in my corner. The doctors don't seem to understand that I'm not a lab mouse, I'm a mother. All I want is for the doctors to fight for me as much as they would their own mother. I don't expect a cure or a miracle just a good honest, gave it everything, effort.
Don't panic if you can help it ... Lyme is VERY irritating to the nervous system, and it's not uncommon to feel all prickly like before a big thunderstorm, only 100 times more so.
Vasculitis is a symptom of infection, and a Lyme infection can bring about vasculitis ... try not to stress over it, because Lyme has lots of symptoms and they show up differently in different people at different times.
One of the really hard things about Lyme is the shifting symptoms, different every day in what they are and in how strong they are. On top of it, Lyme messes with your moods and emotions and thoughts, which makes perceiving calmly what is going on can be virtually impossible.
It's like having the flu and saying I feel fine except when I'm barfing .... the flu can't be separated out from its symptoms, it just doesn't work that way for anyone. Lyme is the same way: the bacteria irritate the nerves and nervous system and mess with hormones which control mood. It's all one big ball of misery sometimes, so don't beat yourself up about being anxious or frustrated or anything: when you are well, all those emotions will go away too.
I am with you 100%. I am tired of running to Dr.s and getting all sorts of opinions which hold no weight. I am sorry you are so sick. I have alot of your similar symtoms. I promise if I come across a good opinion and feel a little better to share with you. I am doing acupuncture and ondamed treatments which seem to help with the pain. What are you taking right now? I should rife more too. I plan to add that in as well. Id love to know as I try to journal all my symptoms and treatments. I am praying somehow we get answers and can focus more on our treatments.
Just to make you feel better, if I worried about every misdiagnoses I had, I would be in the looney bin. Think about this, what are the chances you would really have all these things at the same time? I had lupus, MS, vasculitis, CFS, EBV, Hoshimotos and more.
. I even got kicked out of my TX doctors practice because I wanted answers and she didn't have any. In TX they don't believe in Lyme. Instead of just saying, I don't know what's wrong, she threw me out.
All my blood work was abnormal at that time so nobody could say it was all in my head. Lyme is the great imitator, just remember that and it might be time to go to Dr Z. You need to trust your LLMD and they will tell you what to expect.
Take care and feel better
I am worried it could be MS ALS etc. I had neuro testing done but maybe too early. I know this sounds crazy but I was bit by a tick if it was that about 6 years ago and had flu symptoms twice a year with no flu that lasted a lot longer then usual with no reason every year sometimes twice a year. Dr.s said it was a virus. I had a bad bought of gastro issue for a month in November then all hell broke loose more muscles aches etc then flu again in december then on doxy again for a month then everything got even worse. So I am just scared I want to be around for my child. All Dr.s tests are clear except lyme which doesnt come back fully lyme in a none lyme literate Dr.s view. Just exhausted. I know how leilajax feels. But am comforted by all of you and your help.
Doesn't sound crazy at all. The symptoms you describe, the seasonal flares, are things I've heard others say. Then you can also get bitten again, perhaps by a tick with additional co-infections, which can change the symptoms.
To my non-medical understanding, if you got Lyme 6 years ago, then doxy is likely insufficient treatment, because it cannot reach the bacteria where they are hiding, inside so-called 'biofilms'. I would think an LLMD would also test you for likely co-infections, based on symptoms.
My best suggestion: email to
contact [at] ilads [dot] org
and tell them where you are and how far you can travel. There are many good LLMDs not too far away from your town.
The key to your post: "All Dr.s tests are clear except lyme which doesnt come back fully lyme in a none lyme literate Dr.s view."
If the test is not negative, then it's a positive until proven otherwise, to my understanding. Go for it -- Lyme won't go away by itself. >hug<
I have been in your shoes and know how you feel. It is scary to be told you have all these illnesses.
If you see an LLMD they can rule out Lyme or MS because the unfortunate truth is that mainstream doctors do not have accurate testing for Lyme and a neurologist will most likely say MS because that is his field.
I have lesions in my brain so my TX doctor jumped to MS but the co-infection Bartonella gives similar lesions. A neurologist won't rule out Lyme as the cause but an LLMD can rule out MS as they know the difference in the lesions.
I have told this story before, my pharmacist told me her friend spent 20 years in a wheelchair with MS. Then she happened to read a story about Lyme. She went to an LLMD and is now walking. I would rather spend the time and money on an LLMD then to waste half my life in a wheel chair.
Just trying to help and prevent others from going through expensive and painful tests like I did for nothing.
I was trying to get caught up on your story as I am fairly new to this forum but I wanted to give you a little reassurance about one of your posts here. I will address each of your issues separately so I don't lose track.
Lymph Node: I had enlarged nodes in my groin (pea sized to grape sized) but then I ended up with a golf ball node in my neck. Of course this freaked everyone out because I hadn't been diagnosed with Lyme yet and there is a Lymphoma history in my family. The ENT wanted to perform major neck surgery even though the node was dangerously close to my right carotid artery. I had a bad feeling about rushing into this surgery so I put him on hold and took my CT results to two interventional radiologists that I used to work with for their opinion. They said to leave it alone and rescan it in 6 months, it was too dangerous to take it out. I still wasn't too happy that I had a golf ball in my neck that was making it difficult to swallow so I made an appointment with an oncologist and we did a PET scan to see if it would light up as cancerous.
Long story short, it didn't light up. The node continues to remain in my neck two years later. Sometimes it is a pea, sometimes a grape, sometimes a golf ball....there is no doubt in my mind that it is ALWAYS inflamed due to Lyme. The moral of the story is, I started to realize that some things are better off left alone. It wasn't cancer so it wasn't going to spread and kill me. I am very glad that I didn't listen to all of the doctors who were pushing me to act or else the consequences could have been terrible. Go with your gut and avoid steroids at all costs!
Now that your node has been removed and your pathology is negative for cancer, that is a GREAT thing! There is no doubt that the node was inflamed and if you were to take a poll of Lyme patients out there you would find that most of us have had swollen nodes at one time or another. As far as your axillary artery being enlarged, I don't know if that is even connected to the inflamed node. It may just be anatomical. The other thing to consider is that Bartonella causes increased vascularity in patients (which is why those patients end up with spider looking veins on their abdomen, thighs, stretch marks and areas of petechiae). I don't know if you have been diagnosed with Bartonella but that may be the cause of your increased vascularity.
I can understand that you would be worried when a pathology report comes back as "vasculitis" and when you google it there is all kinds of scary stuff about it but the likelihood is...you had a swollen lymph node because it is working overtime clearing all the debris from Lyme, your constant state of infection/inflammation from the disease and I believe you also mentioned that you suffer from chronic sinusitis too. Even though the pathologist did not find any evidence of Lyme in the node itself, current research shows that Borrelia LOVES lymph nodes and the pathologist probably just didn't catch a spirochete in the one slice of tissue that they had under their microscope.
Chest pain/low blood pressure/irregular heart beat/dizziness: I have all of this too. The chest pain is daily, unrelenting, wakes me up just like you (whenever we can actually get to sleep~Ha!), limits physical activity and is just plain frustrating as hell eh? Try looking up POTS (postural orthostatic tachycardia syndrome) online or dysautonomia. When people have had Lyme for a while or they suffer from adrenal issues, I believe you mentioned a thyroid problem, your autonomic nervous system can get outta whack which alters the beat of your heart and your blood pressure.
This CAN be controlled by increasing your salt and fluid intake, starting medications like Florinef or metoprolol and training your body to react better through certain exercises like sitting up for longer periods of time each day over weeks to months. It will also improve as you treat the Lyme Disease and rid your body of the neurotoxins that the dead spirochetes are releasing. It is actually a "side effect" of the toxins messing with your autonomic nervous system. Also, make sure your RBC magnesium level is ok...not just your serum magnesium.
Once again, this is one of those times where I had to put my hand up and say "Stop" to aggressive doctors who want to rush into invasive cardiac testing. As long as my EKG looks ok and my blood work is fine, I do not intend to have a cardiac catheterization because procedures like that come with RISKS! Chest pain is, unfortunately, part of the Lyme life and we have to judge when it is just our disease or really something to be worried about. Follow the doctor that you trust, use your judgment and listen to your gut.
Lastly, insomnia: It's a curse isn't it? I go days and days without sleep then I crash. I think it has been three years since I have slept for a solid 8 hours without waking up. I am lucky to get 2 hours at a time before I wake up for some reason or other. Usually it is pain but it can also be my wacky heart rate, massive night sweats, the slightest noise in the house or simply nothing at all. Now I am on this crazy schedule of being awake all night and sleeping during the day. There is no rhyme or reason to the sleep patterns of a Lyme patient.
Basically, I have learned to be kind to myself and try not to worry about it. I don't look at the clock, try not to "force myself" to go to sleep, rest when I can and simply accept that it is the disease that is causing this. As I get better, it will resolve. I have tried all of the medicinal remedies in an attempt to sleep but they are not really helpful. They just make me zoned out and even more tired after what little rest I do get. I know you are exhausted and it is a terrible feeling.
Just wanted to reach out to you a little bit because I can relate to some of your issues. Oh yah, I am also "disgustingly skinny" at 97 pounds and fight the battle to gain weight so I hear ya there! All you can do is get through the next five minutes, then the next five minutes after that....it will be better before you know it :)
mojogal- thanks for reminding me that you've been there done that. It really does help and I need that kick in the butt frequently, so again, bear with me;)
cynkevtay- not only are most of our symptoms the same, but we are on the same "mental" page as well. I actually said aloud "me, too" when I read one of your comments about maybe having certain tests too early and maybe now something would show, since I feel worse. It is this vicious cycle of "what if's" and it's driving me crazy!!!! What's worse is the symptoms are so freakin' scary that you can't just ignore them and wait for treatment to work. I can't tell you how many times over the past year I thought "this is it.. ..I'm dying".
jackie- phew... trying not to panic, is like trying not to breath. i just can't help it. my only saving grace is you guys:) I think from now on when a doc tells me something I will ask you guys your opinion instead of googling. That was clearly the worst thing I could've done. Hope you don't mind, but I may not only need you as a shoulder to cry on, but now I need you as a filter as well:(
bettertickedoff- Listening to your story is VERY encouraging. You sound very level headed in the midst of all the symptoms, even the weight loss, that I am experiencing. You are my guru. How'd you do it? Thank you for taking the time to relate to everything that I am going through. It does help cast the shadow of doubt away, very much so! I'll probably have to read your post over and over again to engrave it in my brain, but hopefully I'll get there. Improvement with treatment, instead of feeling worse would help too, though;)
Glad we can help! It's my little revenge on the bugz, to try to help others deal with them. But shhh, don't tell the bugz!
Stray thought: are you on magnesium supplements? (Sorry, can't keep everyone's history straight.) If not, you might try some, because it's very soothing and helps sleep too. It makes a subtle but very useful contribution to my daily wellbeing. (I realized just last week that my inability to concentrate entirely on work until about 3 pm everyday coincided exactly with when my morning dose of Mg wears off. So I've skipped the morning dose but kept the bedtime dose, and whaddaya know, I'm much clearer headed in the daytime.) So yes, I'm a lightweight when it comes to even stuff like Mg supplements, but it also shows how effective it is. Just a thought.
I think you're holding up well, from what I can tell through a computer screen. :) Good for you -- !
I've been off for a few days, so I'm definitely late to the conversation. It sounds like you've got some great advice here already. But of course I have to add my two cents! :)
When I first saw your comments on the pathology report, I wanted to screan! You CANNOT see spirochetes on a run of the mill smear. It requires specialized testing to find spirochetes, and a generic "look see" for pathogens will not see any. Unless they ran specific tests for Lyme, they wouldn't find it. But even if they did and they were negative, it doesn't exclude Lyme.
You've already figured out that the pathologist is out to lunch on Lyme when he says Lyme spirochetes aren't in lymph nodes. I saw PubMed articles talking about Lyme in the kidneys with rare cases of Lyme nephritis, along with other stories of Lyme spirochetes found in kidneys during autopsies. I told both of these things to a nephrologist, and she responded by saying that Lyme didn't affect the kidneys, so my trouble had to be caused by my medications. I couldn't believe it. I didn't argue with her. I just nodded and left.
I'm going to go out on a limb here. Now that you've been to an LLMD and you're convinced you have Lyme, I encourage you to consider taking a step back from all the other investigations and give the Lyme treatment a chance to work for a while. Everything you've described can be attributed to Lyme, and most other reasonable possibilities have been eliminated. I think you're just looking at more stress and anxiety without any real answers or help from Lyme denying specialists.
Of course this does not apply to anything that might cause permanent damage or life threatening symptoms!! But at this point, I'd recommend running everything through the LLMD first. It was my LLMD's PA that insisted I see a nephrologist. Despite the nephrologists's ignorance of Lyme, she gave us a good indicator to use for monitoring my kidneys. I'm grateful for that as it helped me to continue treatment knowing that we could stop when my creatinine got to a certain level.
It's frightening to me that a doc will throw steroids at someone as a last resort, even when they don't meet the diagnostic criteria for any known autoimmune disorder, but they absolutely will not budge on their anti-Lyme refusal to give antibiotics when you don't meet the rigid diagnostic criteria. Steroids can lead to Lyme infection severity bad enough to cause life threatening symptoms. Not a place you want to go. That well meaning doc could literally make you worse.
I am not making a medical recommendation, I'm just suggesting that all these other doctors you are seeing do not and will not believe that you have Lyme Disease. It is highly unlikely you'll convince them otherwise. I dreamed of sending articles and letters to all the doctors that missed it in me, and I finally let go of that fantasy. A doc who refuses to acknowledge the evidence in front of them and the simple logic that leads to Lyme Disease will despise and resist any attempt from a patient to prove they're wrong. They despise and fight each other, and yet they still regard other doctors higher than they regard their non-doctor patients.
A couple docs encouraged me to see an ID doc and a rheumatologist at a nearby university hospital and I politely declined. I concluded that no good could come out of it, only more stress and hassles for me. The last thing I wanted was some prestigious specialist casting doubt in my GP's mind about my Lyme and Bartonella diagnoses and possibly threatening my insurance coverage. My conclusion was that all my nightmarish symptoms were caused by Lyme and coinfections and all I could do was to treat them as effectively as possible, taking meds as needed to ease serious symptoms.
For example, I've been on a beta blocker for a year and a half. My GP gave it to me for my tachycardia and high blood pressure. It really helped and I'm grateful for it. I've still had inconsistent heart beats, not skipped beats, but intermixed weak, moderate, and strong beats. I know to take it easy when it happens. I had no confidence that a cardiologist could do anything to help me with that. However, I did read of a woman who needed a pace maker as she was skipping too often.
If your LLMD doesn't seem confident in knowing what to do about your symptoms, then you need a more experienced one. A good LLMD needs to know when to tell you to 'gut it out' vs. when to call for reinforcements.