GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Hi All, I have had lyme for 11 years. I had an EM rash at the site of the bite, and was told by a dermo at the time, "If we lived anywhere else, I'd say you had Lyme, but we don't have Lyme disease here."
I was given 6 weeks of methotrexate and steroids to help with my skin 'rash'. (Yes...goodbye immune system...)
Since then I've been diagnosed and treated for IBS-D, IC, dysmenorrhea with menorrhagia, severe environmental allergies, joint hypermobility, fibromyalgia, psoriatic arthritis, guttate psoriasis, hypothyroidism, severe insomnia, anemia, hemiplegic migraines, sinusitis, costochondritis.
In November 2012, I found a tick on my arm. I didn't think anything of it, because 'we don't have lyme disease here'.
I went on a holiday and was bitten by a trillion sand fleas...(I think we know what happens next)... I get a terrible flare of neuro symptoms.
I would go on but you guys know what I mean by neuro symptoms. I saw a neurologist and had 2 CT's done-useless waste of time. Dignosis-migraine. Treatment-Botox.
Anyways, my mom put me onto the idea of lyme and I saw an LLND. Very well trained, lots of experience, has helped a lot of patients where other docs have failed.
Clinical Diagnosis-Lyme: Treatment: Doxy, tinidazole. Biaxin. Minocycline instead of the doxy during the summer months.
It has been 3 months.
I have not herxed at all during this time. I have been at max dose of abx since the get go. I never worked up to max dose-just dived in.
My neuro symptoms are steady, and really, one could set a watch to them.
I have an IR sauna, have hot Epsom baths every day, and have so for years because it helps with the joint swelling. Otherwise, I don't do anything that could be considered detox.
The lack of the herx means two things to me... either the treatment is not working, and there are not enough BB dying to create toxins, or, my body detoxes so well, that it can keep up with the BB die-off. Or perhaps I don't have an active lyme infection, perhaps it is something else, maybe viral, or something that isn't sensitive to the above abx.
Other things I've started myself since joining this forum: Daily massages with diluted Thieve's Oil, 1/2 tsp. S & C, Zapper-set to the lyme frequencies, Boron 7mg/day.
Surely with all this, combined with my abx, I would have a herx?
The only thing...when I take the Tindi, I have these bursts of energy. My doc says that I should be having the opoosite-I should be feeling terrible when I take the Tindi. I feel like the fog lifts when I take the Tindi. Just for 10 minutes at a time, but it feels terrific.
Please, any suggestions or theories would be much appreciated. I do have faith in this doc, I know he has had enough experience with Lyme patients to effectively treat lyme and co. But I am wondering if anyone else on here does not herx.
Thank you.
[ 07-02-2013, 12:21 PM: Message edited by: GretaM ]
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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Keebler
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- Short lived "bursts of energy" with a drop afterward can be your form of herx. It's not really desirable to have a ten minute spell of feeling "terrific" only to be dropped.
That would be of concern to me. Be sure your adrenal support is on board so that up & down can balance out.
The "fog lifting" is a good thing, though, and a sign that you are on the right path. You should get more time of that fog lifting as time goes alone. It's just bursts that bother me, not feeling more clear (that's good).
As for other typcial herx reactions, it could be that your liver is doing okay and with the support you do, it's working out okay. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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GretaM
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posted
Thank you for responding, Keebler. Today is one of those days where I am feeling a bit hopeless about the whole thing. I just want to kill the BB so badly and feel discouraged about the lack of 'signs' of progress.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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posted
I don't think I herx either. I have weeks on abx where I feel better and then sick again for weeks at a time. I told my dr I don't see any pattern and he said maybe with more treatment I would see something of a pattern.
I understand. It can be very discouraging when your just not sure and don't know if your treatment is doing anything.
I have another friend that is very ill with Lyme and never notices a herx. Your not alone. Wish I knew our answer. Hang in there!
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GretaM
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Thank you Messa. It is good to hear that I am not the only one not getting any progress feedback/herx with abx.
Are you doing oral abx, or IV or a combo of both?
I am debating if I will have more progress with IV. Except I've been reading and some people do just as well on oral combo abx as on IV.
I don't know what else to do.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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Keebler
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- "progress feedback" is not the same as a "herxheimber reaction"
Your being less foggy for even 10 minutes on Tindamax is a wonderful progress feedback.'
You've been on this protocol for 3 months. It can take many more months of staying the course to see real results. Sometimes, it can take a few years. Really.
I know that's really hard to hear but if you have the best educated and experienced ILADS LLMD you can find, you are doing all you can that is right, it's important to find things in everyday life to keep you steady during this long haul.
Treating lyme is a marathon. Not a sprint. It takes time. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I'm on oral Mepron, Zithromax, crypto plus and artemisia. I have not tried Iv. I have also debated the iv route. Really don't want to.
In some ways I feel like I'm worse. My symptoms move around, come and go and change. Makes it hard to know.
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CD57
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GretaM, I am the same. I herxed and improved very early on in treatment, and not much since than, and I have been around the town. I get the same response to Tindamax that you do. I wish it was longer lasting.
I wish I had more info for you, but I don't. All I can think of is that somehow my immune system doesn't work but that can't be right or I would be dead.
Posts: 3528 | From US | Registered: Apr 2007
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GretaM
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OK. Thanks Keebler. I will try to remain patient.
Oh... my wrecked brain just found a nugget... Is is a coincidence that patient, medical-wise, and patient, perseverance-wise are the same word? With Lyme-I think not.
Sigh. Must be nearing fever-time... all the above words look wrong and I'm rambling.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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GretaM
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Lymetoo.. OK, great suggestion to change my outlook here.... Instead of looking for herx as a sign, I'll look for improvement. Which is what I maybe should have been doing all along. Thanks for the reminder Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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GretaM
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Messa-Thank you for sharing your abx with me. And also your experience with me. I'm glad i'm not alone with how I'm feeling.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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GretaM
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CD57-I had a good chuckle with your post! Not at you, but with you. I thought the same thing "My immune system must be defective"
but then realized I would have been dead years ago.
And also, I am SO GLAD to hear that there is someone, anyone else out there, (that's you, by the way), who feels good during Tindimax. Thank you for sharing that.
I don't feel nearly as defective. Well, I feel like I still have four flat tires... but it's better than no tires, up on blocks in a dusty garage. Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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posted
The other thing you might want to consider is that you have a coinfection which is not being treated. Your meds are geared to lyme only.
The sand flea bites makes me think that you could easily have a bart infection as well as lyme.
According to Buhner 75 percent of patients on his herbal protocol for lyme do not herx, but just feel better. So maybe you respond to antiboitcs the way supposedly most people respond to killing herbs.
The anemia is also a possible indicator of babs or bart -- generally that is not a lyme symptom.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
I herxed once at the very beginning of treatment, Oct. 2011. I've not had a Herx since, nor have I improved. I'm worse now after treating 21 months. My bloodwork shows indicators that I'm still fighting chronic infection.
I hope you fare better than me.
Posts: 181 | From Midwest girl gone home | Registered: Oct 2011
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posted
Another possibility -- depending on digestion and metabolism -- you might want to get your doxy blood levels tested. You might not be absorbing enough of the med and need an even higher dose. Peak and trough blood levels might be helpful.
This may sound like a stupid question -- but why are you on both doxy and mino? -- they are the same class of antibiotics. Never heard of anyone taking both at the same time.
Bea Seibert
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CD57
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posted
Bea, that's interesting about the absorption thing, I have often wondered about that. No docs check for that.
Sideways, what is your story?
I have treated bart and Lyme to death, literally, but still get PCR positive for bart and laundry list of bart symptoms. Babesia I have't really treated, just a 3 week course of malarone and Alinia, which did nothing. Does that mean I don't have babs?
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GretaM
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Hi Bea, Not a stupid question about the doxy and mino. I did the doxy, biaxin, tindi. Had a bad bad sun reaction on my hand. Now on Mino biaxin and tindi. And then back to doxy tindi and biaxin in the fall. I will edit that in my original post-thanks for noticing that! But interesting about measuring doxy levels to ensure a high enough dose. My doc didn't do that when I was on doxy, 400 mg day. But I will be sure to ask him to do that when I return to the doxy. At my first appt I was tested for Bart and Rickettsia-basic titre. Both returned neg. How do I approach the Co-infections at my next appt? Thanks Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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GretaM
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Sideways-that is my fear. That a year down the road my symptoms will be more intense, or just no change at all.
How long have you been infected with lyme?
The folks in my support group say that if you've had lyme for a long time, 10 years for example, that it will take the same amount of time, 10 years, to be back to 99%
I was hoping that aggressive treatment would speed up my time line a bit, but so far, negligible improvement. 11 years of this treatment...I'll have to declare bankruptcy and move in with a relative. Not a prospect I am looking forward to.
Do you have co infections?
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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CD57
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Greta the tests for coinfections are horrible....like for bart, for example, there are 30+ strains now and the lab tests only test for 2. Big margin of error there. Probably same with ricketssia. Your doc should dx clinically, by symptoms, and probably should just assume you have everything.
Your treatment would have hit some bart, with the mino/doxy and Biaxin.
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Keebler
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- Rebuttal to: "years ill match years to get well"
It's not that simple.
Sometimes, someone ill with lyme / TBD for even a week, or a few months, can take many years to reach remission. Some who have been ill for a decade may reach remission in a couple years. Maybe even in one year. There is no time table here.
You can believe a lot of what you hear in support groups. And - you cannot believe some of what you hear when jumping just to how that would translate for your case. What is true for one person is not always true or going to work for another.
Some things shared in groups or even on patient forums may true but - perhaps - not for everyone. And some things are just not true at all.
There are no two patients with the same case. None. Still, we do the best we can as we forge ahead and figure out what has a better chance for those who present with similar parameters.
Basic research methods for any "project" involves many sources. True, it can take years but after a certain point, those years do not "have to" match up equal to years ill = years to get well.
With the CORRECT treatment for YOUR body - NOT "aggressive" but "correct for you" you can see improvement sooner, with a stronger remission perhaps taking a little longer to edge along.
The thing is that medicine, when done correctly is as much an art as a science. There is absolutely no way anyone on this planet can know all there is to know about lyme, other TBD or treatment.
So, the very best and most dedicated combine their education with experience and "art" for each person, each unique case. It's a process and there will be ups and downs and things that work for a while and things that don't.
Taking a broader look over others who have had various access to treatment, there is at least one person here who floundered with a so-so LLMD. Then got to one who was more assertive (not aggressive at that can damage the liver). The assertive treatment was successful in one year's time, after years of illness and other years of moderate treatment.
But the terms "aggressive" and "assertive" can vary in each person's mind.
And - it may be that so many fail or take so long because high enough does of Rx are not normally given for long enough.
But it's not just giving high doses as finding the right combination of the best dose for the person.
I also think liver & adrenal support (and other nutrient supports, too, for brain, heart, etc.) are too often not properly incorporated.
Remission, a full strong sense of being recovered can take a while to feel secure but, really, in one year's time, a good success is possible and a few have been lucky enough to see that.
Yet, as the author recounts in "Cure Unknown" there can be various remissions and "returns" to previous state of illness along the way.
Others may require about 3 years. Some more, some less.
But, as long as you have the best LLMD &/or LL ND you can find and afford, the best treatment protocol and support - and self-care habits - it's going to take a long as it takes.
There will be many reconsiderations of co-infections, too. Just because some co-infection tests were negative does not mean that are in not in the mix for you. Likely, your LLMD will also assess symptoms, history, etc. but the tests had to be a starting point.
Communicate with your doctor as to basic steps and their thoughts on any order to your protocol. This will help you feel more assured, hopefully.
This is a very complex infection mix and what we have to do to get to the other side is a lot for anyone to manage.
We owe it to ourselves to breathe along the way and (once we have our ducks in a row with both diagnoses and the various treatment choices) trust in the process. Work wiser more than harder, when possible. I know that is very tricky, at best, but the best we can do is the best we can do. -
[ 07-02-2013, 02:31 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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TF
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I had lyme disease and company for at least 10 years before I was diagnosed.
I went to a lousy lyme doctor for 2 years. I improved, but could not stop meds. Then, I went to a great doctor and in 8 months I was symptom-free. I stayed on meds another 5 months, and then I was finished.
So much for people who are sick 10 years needing 10 years of treatment!
Now, with that said, I did NOT take any steroids prior to my lyme treatment. The steriods may make your case more difficult to cure. But, surely it won't take you 10 years.
The fasted way to get to wellness is to get to a really top-notch lyme doctor. I wasted 2 years with a lyme doctor who didn't know enough to cure me. Then, I began STUDYING the Burrascano Lyme Treatment Guidelines and I went to hear Burrascano speak. That solidified things in my mind. Then, it was totally obvious that my treatment was wholly inadequate and was responsible for me getting new lyme symptoms.
So, you have to know enough to know when to stay with a doctor and when to find a new doctor. And, you have to know how to evaluate your lyme treatment so that you don't waste time.
Many doctors treat lyme disease, but only a few know enough to get rid of it for a person. I know the names of a few such doctors. I stick around LymeNet just to give out these names and to help people through the lyme doctor learning curve.
There is nothing better you can do for yourself than to study the Burrascano Guidelines found here:
They will give you your education on this complex illness.
I also know a lady who was almost certainly born with lyme disease. Her mother had fibromyalgia (lyme) and all of her children also had it! Imagine that.
So, at age 50 this lady went to a lyme doc I recommended and found out that she had lyme disease. It took about 3 years for her to be cured of 50 years of lyme and coinfections. And, of course, she had no more fibromyalgia either!
So, please do not become discouraged thinking you will be in treatment 10 years!
Very few of us really know how long we have had lyme disease. The more you educate yourself on this illness, the further back you can see its symptoms in your life. So, the more educated patient will often say they were sick much longer than a person who doesn't know much.
Lyme can be episodic at first. It was episodic for me for the first 5 years. So, this can all make it more difficult for people to pinpoint when they first got sick. If you don't see an attached tick or a bulls eye rash, you are estimating when you got lyme based on symptoms. Some people get more than one bite, but think they got lyme at the second or later bite because they never saw a rash at the first bite. etc.
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CD57
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TF, I have been to the Burrascano practicing docs, I wonder if GretaM has too? Don't know, with the current climate, if there are actually that many left, because it takes cojones to practice that way (aggressive). Lots of ""LLMDs" seem to be handing out zith or doxy and then wondering why people don't get better. Aia!
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GretaM
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Hi all. Yes, CD57-you're right about the docs.
I have an ILAD trained ND, the best and most experienced in Canada currently, and have consulted with "the" infectious disease doctor that was treating in Canada. Now retired.
I have read the ILAD guidelines, Burrascano's treatment guidelines, and the German borreliosis guidelines.
An LLMD in Canada... great! Where?
I posted on the Seeking Doctors Forum for an LLMD in BC and had one reply from a very sweet forum member with links to the Seattle LLMD. Which is something I will consider if I cannot find a BC doc.
I have contacted CanLyme and go to the support group meetings.
The patients there either travel to the US or see LLND's. No one discloses the name of their medical doctor who is working with the US LLMD's because the BC CDC has clamped down on lyme research and lyme treatment and physicians are terrified here to treat lyme. Those that aren't brainwashed that there is no lyme in the lower mainland.
So basically I follow my LLND's instructions to the letter, I follow Burrascano's guidelines for diet and exercise. Have made sleeping a priority. And I come to this forum for advice and support, which I greatly approeciate. It is nice not to feel completely isolated and hopeless with lack of progress and worsening neuro symptoms.
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poppy
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Bacteriostatic drugs might not produce herxing, as opposed to bacteriocidal. And sometimes it depends on the dose of bacteriostatic drugs. Another possibility is that since lyme symptoms are variable over any time period, it might be hard to distinguish between symptom flare and herx.
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CD57
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Good point, Poppy. The problem is a lot of the drugs used to treat these meds ARE bacteriostatic....supposedly a few of them become 'cidal at higher doses but I have not personally experienced that.
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quote:Originally posted by GretaM: Sigh. Must be nearing fever-time... all the above words look wrong and I'm rambling.
Do you have daily fevers? This can be caused by babesia or tick relapsing fever. Perhaps your infections are not being addressed with the correct abx combinations.
-------------------- 13 yo DX PANS/Tourette's/Asperger's/ADHD treated for Igenex positive bartonella/IND lyme with 2 years of abx treatment. Weaned off abx April 2013 at 80% improvement. Continuing with Buhner bartonella/babesia protocols. Aug 2014 99% improvement. Posts: 265 | From Canada, Ontario | Registered: Jul 2013
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GretaM
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Hi Poppy, Yes, perhaps the doses need to be higher? I am at the high doses as per the guidelines for all 3 abx, but haven't had the abx levels tested via serum, as Bea suggested. I will inquire about these tests at my next visit.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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GretaM
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Rowingmom-yes, fevers everyday at the same time. RMSF was suspected at first. I will ask about the relapsing fever. Thanks for the tip Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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poppy
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The theory, I think, with bacteriostatic antibiotics is that they prevent the bacteria from being active, and if this goes on long enough they may die. Don't know if this has been proved. If it were true, then you would be looking for improvement without a herx.
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I don't know if I have coinfections. I was tested by my first lyme dr for 2 strains of babesia and was negative. Was told just because I was neg didn't mean that I didn't have them.
I was actuslly never clinically diagnosed with lyme. My ELISA and WB came up positive when looking for possible causes of the vascular inflammation in my eye. 2nd llmd clinically diagnosed me as not having coinfections. When I wasn't getting well and due to my eye issues, she treated me for bart w/ a month of cipro. No herx, no improvement, so she took me off.
Earlier this year she put me on malarone amd art for babs. Same thing: no herx, no improvement, taken off after a month.
I haven't herxed from anything since 10/11.
I don't have a ton of symptoms, but what I have is bad. Eye and vision issues, permanent damage to my retina, unrelenting eye/orbital pain everydat that vicodin doesnt touch, tinnitus, depression. Ear pain and fullness sometimes along with swollen glands. I have some knee pain, not much and some left calf pain but they arent too bad. I could live with them.
The tinnitus, ear stuff and eye/orbital pain started months after treatment started and still persist.
The eye/orbital pain has me nearly non functional.Add in the tinnitus and I'm almost insane, too.
I'm so tired. I'm almont done.
Thats my story.
Posts: 181 | From Midwest girl gone home | Registered: Oct 2011
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GretaM
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Sideways- it sounds like you are really suffering! I am so sorry that you have to go through the ear and eye pain constantly. I haven't been clinically diagnosed with any co infections either, so I don't know the ins and the outs. But I remember reading that minocycline readily goes into the middle ear, so feelings of ear pressure, clicking and balance issues are sometimes because of that. I'm not sure if you're on mino or not. Is a month long enough for babesia treatment? I don't know much about malarone. (sp?) Hang in there sideways. I am sending a million good wishes your way.
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GretaM
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Poppy-thanks for the info on bacteristatic. That would be wonderful if that is the reason I don't herx. Here's hoping Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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CD57
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Sideways your symptoms sound like bart to me, with the eye stuff. Consider the new Buhner protocol for myco and bart to bring down inflammation. It's not a killing protocol, but an inflammation reduction protocol.
Did you look at other infections as a possibility?
Posts: 3528 | From US | Registered: Apr 2007
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I did go to another llmd who just treats for all coinfections. Right now, it looks like I'm on a babs protocol.
But I'm still unsure of making the break w/ the llmd I've been with since 11/11. I haven't done it yet. Going to have my next appt with her and tell her my concerns. We'll see what happens.
I'll look into the Buhner protocol. Thanks. I'm considering rife, too.
Posts: 181 | From Midwest girl gone home | Registered: Oct 2011
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GretaM
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Hi Sideways,
You mentioned that you went to an llmd prior to your current llmd.
Did you herx at all with treatment with the first llmd?
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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posted
I started herxing within hours of my first dose of 100mg doxy from my PCP when I was first diagnosed. I was sick in bed for 3 days.
I went to my first LLMD 5 days after I was diagnosed and started on a multi-antibiotic protocol. I felt horrible when I walked into his office and for the entire month of October 2011 and slowly started to get better.I was feeling good by early Nov.
I saw my 2nd llmd the end of Nov. 2011. (The first guy wasn't a well-known, or considered a top-notch llmd, so I switched to someone who is.)
So, I don't know if I herxed from what the first llmd gave me. After I was able to get out of bed after the initial 3 days, I still felt horrible and wasn't able to do much, but I was able to get up, shower and dress. It slowly got better over the month.
Looking back, I wonder if it was a mistake in leaving that first doc. I have more problems now than I ever did before. Sometimes I wonder if it's lyme & co from being undertreated, or, since I never herxed and had new symptoms appear during treatment, if lyme co are gone and I now have damage from prolonged abx.
Posts: 181 | From Midwest girl gone home | Registered: Oct 2011
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GretaM
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hi Sideways,
I see what you mean about the doxy, was it a herx, or wasn't it etc. It's so hard to say if the symptoms I have are from the lyme cycle, a co-infection, or herx. I just don't know.
And I completely relate to new symptoms appearing, even though you're in treatment.
The bone pain is a new thing for me, and also, I've had 2 almost-seizures, (I don't know how else to describe them), since being on treatment at full doses.
If only there were reliable tests to show the progression or remission of this disease.
The only thing we have is the waxing and waning of our symptoms to indicate if things are improving. So frustrating.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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CD57
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My story is similar to Sidways' as regards the doxy and the experience.
Interestingly the NY Times profiled people who had similar experience as well. They were diagnosed with PLDS.
GretaM, you said "My neuro symptoms are steady, and really, one could set a watch to them." That is how mine are for the most part. My LLMD said it has to do with inflammation control from cortisol being much lower at night than in the morning and daytime, thus more symptoms at night.
I have all these years had bart and Lyme symptoms but no relief from treatment from them. I have to wonder also if there is dmaage/prolonged cytokine response that kicked in long ago and has not dissipated? One of the famous LLMDs on the east coast talks about this.
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GretaM
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CD57- That is fascinating about cortisol control.
I am heading to the web to do some reading about it. Thank you.
Have you had any improvement with your symptoms over the last few days?
I am up to 1 tsp salt and 1 tsp C per day-but haven't yet had a herx from it.
Also, ran out of mino yesterday...can't get into see my llnd until 16th... so it will be interesting to see if things slide.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Yes GretaM feel free to PM me...I did note that you say that your rash is now gone? yay. that's something.
Posts: 3528 | From US | Registered: Apr 2007
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