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Avatar universal

Where do I go from here?

In the past year I have been treated with 2 rounds of oral antibiotics and 28 day IV antibiotic treatment.  I am told that I have had two separate infections but I do not believe this as no one else in my household has been infected.  My infectious disease doctor insists that the infection is gone because I have received "the gold standard treatment" and that the symptoms I am experiencing may just continue for up to 6-12 months, unless I get reinfected by another tick bite.  I do not think I have been cured but I don't know where to go from here?  I need advice.  Is there more testing I should insist on being done?   Should I find another Infectious Disease Doctor and go for a second opinion?  Should I consult with a neurologist since I am having much difficulty sleeping, have foggy brain, fatigue, and neck stiffness and upper back muscle tension and spasms that are driving me crazy?   I am afraid if I do nothing like my doctor is suggesting my health will continue to decline.  Someone please help me.
16 Responses
15439126 tn?1444443163
"Post-treatment Lyme Disease Syndrome" (PTLDS).

The Center For Disease Control remarks this can last up to six months or more, but patients almost always get better.  They remark that long term antibiotic use has no more positive impact than a placebo and may have major undesireable side effects.  

I suggest you visit their article at cdc.gov (which also has a link to a youtube webinar).
Avatar universal
[This is too long for one message ... see next post]
=======================================
Welcome to MedHelp Lyme ...

I would have the same concerns that you state above in your post, and I respectfully disagree with ScalpMassager's views (more below on that).  

This response to you seems very choppy to me, and I've been getting interrupted over and over for some hours, so it may be a real jumble to read.  My apologies, but will check in later in the day (on Wednesday Oct 7) after I've gotten some sleep.

In the meantime, try not to worry, and keep plowing ahead.  You're doing fine.

Here we go with some comments back and forth:
======================
You say:  "In the past year I have been treated with 2 rounds of oral antibiotics and 28 day IV antibiotic treatment."  

   --- My question:  Which antibiotics, and how long for each?  Doesn't have to be exact, just a ballpark number as you recall it.  
======================
You say:  "I am told that I have had two separate infections but I do not believe this as no one else in my household has been infected."

   --- My question:  Which infections were you told you have or had?  

   --- My comment:  Some people are more likely than others to get bitten for various reasons -- perhaps due to body chemistry that is more or less attractive to different insects.  When I was a kid, for example, we would sit outside in the summer evening, and sure enough the mosquitoes were all over me, but they didn't bother others in my family.  

============================
You say:    "My infectious disease doctor insists that the infection is gone because I have received 'the gold standard treatment' " --

-- My comment on that statement:  I saw a couple of infectious disease (ID) docs when I first had Lyme disease [but before receiving a diagnosis], and those docs had some fixed ideas about what exactly my symptoms etc. should be.  

None of them thought of Lyme as a possibility, but ID docs *should* be on the front lines of ... infectious diseases (duh!).  However ID docs as a group seem not to have open minds to Mother Nature's mischief in creating new infections and ailments.  In my amateur view, any doc who is so certain that there is nothing else to be done (the 'gold standard' indeed) isn't paying attention to the new ailments that Mother Nature is creating constantly, and I personally would consider finding an MD with a broader view of the possibilities.

Your ID docs also said:  "... and that the symptoms I am experiencing may just continue for up to 6-12 months, unless I get reinfected by another tick bite."  Why does your doc not treat you with antibiotics?  I'm not medically trained, but a family member and I had Lyme a few years ago (and a close friend of mine had it years ago and passed it to her new baby), so I've done a fair amount of amateur reading on Lyme and the other infections the 'Lyme' ticks also carry (about half the time).  

[Side note:  did your ID doc test you for other infections the 'Lyme' ticks often also carry?  If so, which infections and with what test result?]  If I may say so, I would find another Lyme doc for a second opinion, because Lyme does not just give up and go away without antibiotic treatment.  I know people who were treated late and those who were treated early in the infection, and 'early' is always better, but it is what it is, so try not to worry.  

Lyme disease is in the same family as syphilis, which I understand may be passed from mother to baby and is communicable to those with close contact such as through sex.  I have not kept up with extensive reading on this topic in the last few years, but I would certainly look into it with a serious MD, preferably before a pregnancy.
================================
You say:  "I do not think I have been cured but I don't know where to go from here?"

   --- Infectious disease (ID) docs sometimes (often?) have rather fixed views about various ailments.  It's not clear to me which 'infection' your doc says you had.  Would you share that with us?  

   --- Also, in my experience, ID docs as a group seem to have fixed ideas of several infections and how they are supposed to look and act, and continuing symptoms (perhaps like those you are still feeling) are sometimes categorized as 'post-[illness] syndrome' when the infection may still be quite active and potentially transmissible.  

I suspected from my own encounters with ID docs that there is SO much for them to learn and keep in mind that they don't tend to look beyond the limits of well-known infectious diseases, while it's very important that all patient aspects are considered, not just in one category such as infectious disease.  A Lyme doc might well give you a broader reading of your situation, since Lyme affects several or many bodily systems and functions.  It's what I would do.

=====================
     You say:  "I need advice.  Is there more testing I should insist on being done?"  and "Should I find another Infectious Disease Doctor and go for a second opinion?  

I would find a good MD who focuses on Lyme.  It seemed to me when I toured through so many MD's offices looking for a diagnosis that many MDs who do NOT specialize in Lyme and other tickborne infections are still relying on the now-outdated view that Lyme is not a particularly serious ailment.  

Although an infectious disease [ID] MD seems a natural first thought, I did not have any luck finding an ID ... many of them may now practice in the AIDS field, since it is a new field only around a few decades.

I suspect also that if an MD has a field of particular interest, then his/her patients will find their way to that doc's office.  This is an age of specialization in all respects, and medicine is certainly no different.  Also, there are so many unique ailments like Lyme that a doc could not be expected to know everything about ALL infectious diseases and likely focuses only on one or a few closely related fields of practice.
=====================
     You say:  
                      "Should I consult with a neurologist since I am having much difficulty sleeping, have foggy brain, fatigue, and neck stiffness and upper back muscle tension and spasms that are driving me crazy?  

I grew to understand that as a group, neurologists were not particular interested in Lyme, but I cannot now recall how I figured that out.  My own Lyme doc was (is) an immunologist by training, and while that may seem far away from the other fields you are considering to target an MD to work with, my doc's particular interest was Lyme, and it work quite well.

=====================end of part one======================
    
Avatar universal
=======================begin part two======================

You say:  
                      "I am afraid if I do nothing like my doctor is suggesting my health will continue to decline.  Someone please help me."

I absolutely agree with your inclination to find a Lyme specialist.  I went through 20+ MDs before one of them finally tested me for Lyme, and when the test was positive, I knew I needed a Lyme specialist, since an old friend had had Lyme years ago.  When an MD decides to focus on Lyme, I take it as a good sign.
====================
Poster 'Scalpmassager' (above, from British Columbia, Canada) says:

"Post-treatment Lyme Disease Syndrome" (PTLDS).

"The Center For Disease Control remarks this can last up to six months or more, but patients almost always get better.  They remark that long term antibiotic use has no more positive impact than a placebo and may have major undesireable side effects.  

"I suggest you visit their article at cdc.gov (which also has a link to a youtube webinar)."

==========================================
==========================================
'ScalpMassager' says above in response to your post:

     "Post-treatment Lyme Disease Syndrome" (PTLDS).

     "The Center For Disease Control remarks this can last up to six months or more, but patients almost always get better.  They remark that long term antibiotic use has no more positive impact than a placebo and may have major undesireable side effects.  

     "I suggest you visit their article at cdc.gov (which also has a link to a youtube webinar)."
------------------
My comments on the 'ScalpMassager' post above:

     -- About 'Post-Treatment Lyme Disease Syndrome' --

As mentioned above and elsewhere, there is a split in the medical community about Lyme disease.  Lyme is a bacterial infection with the ability to hide in slimy places in the human body (called 'bio-films').  When the bacteria hide there, the human immune system (as well as commonly used antibiotics) cannot penetrate the bio-films in order to kill the Lyme bacteria.  

As ScalpMassager writes above, the term "Post-treatment Lyme Disease Syndrome" (PTLDS) is a label created some years ago to try to explain why Lyme patients still felt lousy after taking the then-standard treatment for Lyme disease, that treatment being the antibiotic doxycycline ('doxy' for short).  The problem was that after the doctor-prescribed short-course of doxy, many Lyme patients were **still ill** with Lyme, but the docs kept telling the patients they were imagining things, since a short course of doxy SHOULD be enough to kill off a bacterial infection like Lyme.  

At that point in time, however, the docs and researchers had not yet discovered and did not understand that a short course of doxy was NOT enough, because the Lyme bacteria know how to hide in slimy films they make ('biofilms'), and as a result, the human immune system cannot find or kill the Lyme bacteria hiding in the biofilms.  Since the docs were totally certain they were correct, their explanation was that the human immune system was simply over-reacting to the now-gone Lyme infection.

Umm, a more logical answer would be that the Lyme bacteria had NOT been wiped out, but the medical profession doesn't always operate with logic, and in this situation, the CDC [Centers for Disease Control, an arm of the US govt] continued to insist that the treated patients no longer had Lyme *at all* ... never mind that the patients were still ... uhhhh .... SICK with Lyme.

The poster above states:  "The Center For Disease Control remarks this [continuing symptoms] can last up to six months or more, but patients almost always [!] get better.  They remark that long term antibiotic use has no more positive impact than a placebo [really?] and may have major undesireable side effects [such as ....??].  ... I suggest you visit their article at cdc.gov (which also has a link to a youtube webinar)."

This poster followed the standard line put out by the docs at the CDC, ignoring the research being done elsewhere.  There are still docs in the Lyme field who lean toward this idea, however, so keep your antennae up.

So, you may ask, who is this person posting [meaning me]?  I am just someone who had Lyme some years ago and know how hard to was to figure out what the docs were and were not doing that made sense.  I have an old friend, a scientist who had Lyme a long time ago, and I learned from her about Lyme and had kept an interest in it over the years.  If I had not had that background with my longtime friend, I would not have known anything at all about Lyme.

My conclusions are that the scientists at the CDC (1) are stuck on their early, inaccurate views of Lyme and (2) should not to be so proud.  Thus the CDC's statement (quoted above by ScalpMessenger) that 'The Center[s] for Disease Control remarks that [Post-treatment Lyme Disease Syndrome], but the patients almost always get better.'

["ALMOST ALWAYS GET BETTER"?  Why not step up and admit the IDSA stopped working on this long ago, but others have picked up the trail and saved many many of us out here]

This continues from ScalpMassager above, stating, "They [CDC] remark that long term antibiotic use has no more positive impact than a placebo and may have major undesirable side effects [meaning the supposed 'post-treatment Lyme disease syndrome']."  If only the CDC would do some up-to-date research and publishing rather than continue to bang and crash the same superceded views.

No offense to you personally, ScalpMassager:  my critique is aimed at the CDC, because there are many, many people still suffering under the CDC's 'take a deep breath and live with it' approach.

Science closed the research horizon on Lyme too quickly, and that is a shame.  People are suffering as a result.
=================================
Footnote:  another example [unrelated to Lyme itself] of the damage closed minds can do?  When AIDS first hit the news some years ago, there was great fear that AIDS would spread through the world, killing millions.  

To quell panic, the CDC [Centers for Disease Control in Washington, D.C.] held a news conference with several of its senior white-coated docs with stethoscopes draped around their necks, standing at the microphones.  

The senior doc intoned that unless you were either gay or Haitian, you could not get AIDS.  At that time, the preponderance of AIDS victims were indeed gay or Haitian, but what a silly thing to say.  It was a public relations statement, but at what cost to the credibility of the CDC and its senior MDs, and the harm done to those who believed they could not get AIDS because they were not gay or Haitian?
--------------------------------
And regarding the statement above that 'long-term antibiotic use has no more positive impact than a placebo and may have major undesireable [sic] side effects' -- that follows the CDC parroting from years ago, but really is out of date.  Lyme bacteria have particular characteristics that are quite different from what is stated above.
===================================

It's nearly 2 am here, will get some sleep and then check back in the morning.  Take care -- you're doing fine.
1763947 tn?1334055319
Jackie gave you all the pertinent information. I would never see an Infectious disease doctor for the reasons mentioned above. I was in the hospital, they sent an infectious disease doctor in to see me. I kicked him out of my room when he said that "lyme doesn't exist in Florida" it exists everywhere except Iceland.
Avatar universal
I would also suggest seeking out a Lyme literate MD - your symptoms seem pretty classic Lyme.

This bacteria is a spirochete that burrows deep into tissues.  It also has 3 forms it can change between, and each form is susceptible to different types of antibiotics.  So, for example, if you were on one type of antibiotic that kills the spiral form, and some or most of the bacteria were able to change to the cyst form which is not affected by that antibiotic, the infection is not gone.  When the environment becomes less of a threat to them (as in, the antibiotic is no longer present), they change back to the spiral form.  They reproduce about every 12 hours as opposed to most bacteria that reproduce about every 20 minutes, and since it's at the time when they are splitting that they are most susceptible to the antibiotic, the time it takes to kill them all is long, and multiple types of antibiotics are needed to attack the multiple forms the spirochete can take.

There are also herbal protocols that can be quite effective; the herbal tinctures have antibacterial and antiviral properties.  Either way, the treatment can take a long time, and very generally speaking, the longer a person has been infected, the longer it will take to get rid of the little buggers.  If you just got bitten, 6 weeks of doxycycline may very well take care of it.   If they've had a long time to burrow deep and get into places that are well-hidden, it will take longer to get to them and get rid of them.

There are also herbals that are very useful in helping the body get rid of the dead bacteria - when they die they release toxins that can make us feel even worse until the body can remove them.

No, Lyme is not an imaginary disease and it's (a lot of the time if not most of the time) not an autoimmune issue.  It's an infection.  Find someone to help you treat it.
15439126 tn?1444443163
Well, if in doubt I suggest ask to retested for Lyme disease (I'm guessing but imagine you'd need to wait at least six weeks after treatment before retesting would be meaningful).  I think it very likely that's already been done.

Have you requested a copy of your medical records and test results? I think that's often a good practice when for non-routine medical matters.

I certainly agree that if you can find an MD that's chosen to specialize in Lyme disease within manageable travel distance, that's a worthy project to consider.
Avatar universal
My, wasn't I in a huff when I posted above.  :)  I sound like a crank, I know, but really it's only because I am so aggravated by the barriers too many in the medical profession are putting in the way of suffering patients.

I hope you will look for an MD who understands Lyme disease the 'ILADS' way, and ILADS has a referral function on its website that can help you find a good doc near you.  

Sending you all good wishes for a new doc, a swift treatment, and a return to full health.  I am now more than 5 years past my Lyme treatment, and I remain entirely well.  I wish the same for you!  

Let us know how we can help.
Avatar universal
Thank you for your response.  Here's additional information about me and the treatment I've received:
Sept 2014 and Jan 2015 - 21 day doxycycline treatments
May 26-June 22, 2015 - 28 day ceftriaxone 2 gym in 100 ml NS 200m l/h HP

Sept 25, 2014 blood test results:
Present:  Igg P30 Ab; also P23, P41, P39, P23
Absent:  Igg P28 Ab; P18

Negative Lyme Igg Wb Interp

Lyme disease Ab, Quant, Igm 10.85
Lyme disease Igg/Igm Ab 3.13

Absent:  Igg P23 Ab: also P66, p58, P39, P45

Present:  Igg P41 Ab

January 2015:
Lyme Igg/Igm Ab 2.27
Lyme disease Ab, Quant Igm 3.36

Babesia microti Igg - normal <1.10
Babesia microti Igm - normal <1.10

Negative
E. Chaffeensis (Hme) Igg and Igm titer
hge Igg titer and Igm titer



Avatar universal
Thank you for your reply.  I never saw a tick and never had a bulls eye rash so I have no idea of how long I had Lyme disease before I was diagnosed.  Up until July 2014 we had two dogs and one of them was diagnosed with Lyme disease in Sept 2011   I have since started to wonder if perhaps I have had this disease that long because some symptoms I experienced years ago have now sudden returned (almost constant muscle spasm or feeling of heaviness and electricity in upper back).

Were do I go to find out more about herbal treatments for this disease?
Avatar universal
oh boy - if the dog was diagnosed back in 2011 then you know there was certainly the opportunity for an infected tick to get to you also.  Not that it changes anything, but you can reasonably think your own infection could be older rather than newer.

Regardless, you are aware of it now and ready to address it!

I found a lot of good information on the Cowden protocol.  He even has the entire protocol (dosing, schedule, etc) laid out and available for download, free (yes, free, gives you everything you need to know).  Right now I think I might do 3 or 4 months of it after my antibiotics, simply because I really want to be sure the Bb is all gone, and knowing when that is is difficult.  

There is also good info on the Horowitz protocol - I have read a little about it including some folks who strongly recommend it.  I personally like the Cowden approach, maybe because I was able to find it easily, and I am really impressed by Cowden's sharing of all the information.  Yes, NutraMedix benefits from the sale of the tinctures, and Cowden does have an affiliation with them, but especially in this day and age I am still impressed.

The herbal tinctures are made by NutraMedix and are available from a number of internet vendors.  I've bought some through amazon and also iHerb - the prices vary a bit and I haven't found one vendor who has the best price for all of them (I would suggest staying with reputable vendors, to make sure they are not outdated, etc.).  I am currently using burbur, pinella, and parsley to help with detoxing (in this case meaning assisting the body with the removal of the die-off toxins).  They really do help with the herx symptoms.  Burbur and parsley for muscle/joint detox, pinella for nervous system.

You can get the whole schedule here: www.nutramedix.ec /pdfs  /  protocolschedule.pdf.  I put some extra spaces in but iff the autobot removes the link I will send it to you separately.  The tinctures run maybe $17 - $30 each, and generally are used by putting 10 drops into 4 oz. water (filter the water so no chlorine or ammonia in it).  Let it sit for a minute or more, then drink.  Some of the dosages are higher as the program progresses.  So it's not exactly cheap, but it's also less than other more conventional options.  If you are like me, now that I know what is wrong with me, it's worth just about anything to get rid of it!

For what it's worth, relating to your old symptoms that are now recurring,  I have had herx reactions for symptoms that I had no idea might be related to Lyme.  I guess they are.  Thankfully they don't usually last very long...  

I hope this helps - just let me know if anything needs clarification.  Good luck and please stay connected and keep us posted!
Avatar universal
Thank you for your response.  My infection disease doc had actually released me from his care and this he did after I was reporting continued symptoms and some symptoms that I had encountered years ago that had returned.  I was just told it was quite common to feel this way for 6-12 months following treatment and reassured that because I had received the "gold standard treatment" the infection was gone.

It has been 3 months since I have completed the 28 day IV antibiotic treatments so I see that it is probably too early to be retested.

Right now I am seeing a chiropractor to hopefully get some relief from my neck stiffness and upper back issues.  I need to find a doctor who specializes in Lyme Disease but I am away from home now for the next month.
Avatar universal
Sounds like your doc threw in the towel, so now you're free to find another doc.  Since you have access to a computer even while away from home, I would suggest that you spend a little time finding possible Lyme docs so that you can get in line when you are home ... This time of year (late summer, early fall) is when many people realize there is something wrong, and the good Lyme docs book up fast.  ...   The sooner you are properly diagnosed and treatment begun, the better.  Let us know how we can help, and how things go -- all good wishes to you!
Avatar universal
I have been trying to match my old printout of what each test band means, but there are enough differences (between your notes on one hand and my notes taped to the wall here) that I hesitate to try to match them up.  
If you search online for 'igenex western blot break down by hand', it might take you to a more current version of what I have here.

Different labs notate in different ways, and time marches on as well ... it's been several years since I got rid of Lyme, and my notes may not match your test results for the same reason:  the march of time, and advances in medicine and treatment.

Getting a second opinion from another doc is not a bad thing to do, and could give you peace of mind about your doc's diagnostic and treatment approaches.  Lyme is still a fast-moving area of medicine, and in your situation, I would be willing to go through the hassle of getting a quiet second opinion from another doc.  Your first (current) doc need not know ... which is a good reason to always get full copies of all test results, so as to have them in hand for a second opinion if needed at some point.

Or, you could just sit down with your current doc and ask him/her to explain what the results mean line by line, and then consider getting a second opinion.  Best wishes to you --
Avatar universal
Can someone tell me what I should be doing now while waiting to make other medical appointments?  Are there foods that I should be staying away from?  Exercise or activities to avoid (not that I'm really doing much at this time.  Should I try to?).  Are there any books you can recommend I read to learn more about this disease?  I have been making notes of new symptoms or strange sensations as they come and go because I can't rely on my memory and a few things have literally bothered me for a short period and suddenly stopped.  should I be taking and recording my temperature daily?  Someone referred me to dr Martin Mulders in Wayne PA who is an holistic doctor who successfully treated a teenage swimmer with Lyme disease that we know. Dr Mulders is an ILADS recommended Doctor.  Since I am in SC until mid November it will be a bit before I will be able to see him but I am currently requesting copies of my medical records from the infectious disease Doctor.  Is there anything else you can recommend for me?  What can I expect from treatment with a holistic Doctor?  Thanks for your help and guidance.
Avatar universal
-- "Are there any books you can recommend I read to learn more about this disease?"  'Cure Unknown' is useful.  The title is a little alarming, but I think it was meant that the 'cure' for ignorant Lyme docs is what is 'unknown.'  It's in paperback now, I think.
-- "I have been making notes of new symptoms or strange sensations as they come and go because I can't rely on my memory and a few things have literally bothered me for a short period and suddenly stopped.  should I be taking and recording my temperature daily?"  Yes, I did that, and my doc liked it a lot.  Lyme can make the memory hazy while you are ill, so having notes like these are very helpful to a wise doc.  
-- As to a holistic doc or not, what matters really is the doc's views on Lyme and treatment for it.  If the doc is an ILADS member, that's usually a good sign, but not infallible.  Getting a recommendation from a happy former Lyme patient is a good thing too.  Best wishes to you --
Avatar universal
Things you might do depend on your symptoms.  There is a chemical compound in gluten that can feed inflammation, so if joint pain and inflammation are an issue you can try reducing wheat.  I have also found that reducing refined sugar can be helpful in reducing inflammation and pain.
I have spent the last 6 months educating myself about Lyme.  Prior to that I thought I was one of the unlucky extreme parvovirus B19 victims, but it now seems possible that it was the parvo that unleashed the latent Lyme.  Anyway, there are lots of books available on Lyme, some good some maybe not so good, but that's personal preference.  I have read a few, and so far Dr. Stephen Buhner's are my favorites, but they tend to be very information-dense and thus more difficult to read.  I bought Cure Unknown but haven't read it yet (I will).  Right now I'm in the middle of Coping with Lyme Disease by Denise Lang and so far I find it informative and easy to read, although it's a bit older and so somewhat dated (but a lot hasn't changed, sadly enough).  I would simply advise that you avoid any that say this is not a real disease, because in my opinion those were written by people who have absolutely no experience with Lyme.

Good luck, and let us know how you're doing.
1 Comments
Well said!
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