Lyme diagnosis and treatment

[Texargent]

Hi guys! Like most of you, I have been going to all sorts of doctors for4 years until I found an LLMD who diagnosed me with lyme. He said I was lucky my immune system is strong because most people he have seen with lyme are really feeling worse. Anyway, just wanted to say that 3 months after taking doxy i started feeling good. When I say good Ido not mean " normal", I mean i feel my symptoms are not making my life miserable.. In other words when I say I feel good it really means symptoms are still there but not as strong..
So anyway After 3 months of doxy I started having good days...which I haven't had for a long time. Currently, I am still taking doxy, it has been 1.5 yrs... My doctor said to take it until symptoms fall apart. He also gave me flagyl... I have been on that for about 6 months (3 times a week). I must say i havent felt any differences after taking the flagyl, but im still on it.
I keep a daily log about my symptoms and grade my overall feeling on each day. I notice a recurrence of symptoms or flare ups once a month, which can last from a day to over 3 weeks. I remember having this flare up while NOT being treated... My question now is.... Are these flare ups related to a progression of the infection or due to herx reaction? I am now on the strongest flare up since I started my meds and it is lasting 3 weeks so far.
I would like to comment on how this flare up started... On my good periods I tend to have some bad days or bad moments that lasts only a couple of hours. Well i was feeling ok (on my ok days i feel good in general terms, but have photosensitivity, swollen eyes, and mild neck contractures)... Suddenly a dizzy spell appeared... The-next day i had some moments where i was really fatigued,  then began experiencing a few muscle twitches, photosensitivity increased... Now other symptoms added to those Mentioned before: wrist and knee discomfort that comes and goes, neck cracks, feeling off balance, temporary brain fog, crawling sensations that migrate...ringin in ears.. Now im wondering how many more days this will last.
I would like to hear from those lymies who are also on treatment. First would like to know if this flare up is common to you too? Does my ab treatment appear normal? Does it seem ok to experience a biggest flare up after a year of treatment? (I mean, should i have milder flare ups as treatment continues? May be its an indication of infection instead of a herx rxn).

[cave76]

" Last week I had a period of feeling really good... almost symptom free i could say, but suddenly the symptoms came back... they are not BAD but it really bothers me not to feel 100% symptom free. "

One of the hallmarks of Lyme is how it waxes and wanes.

It sounds as if you will be one of the many lucky people who will go into a long lasting remission since you're making such progress.


For mojo----Cefuroxime = Ceftin------ a drug that is supposed to pass the blood/brain barrier. I tolerated it pretty well.

[mojogal]

From an ex Texan, which I knew then about a Dr you could talk to by phone. I have been on Flagyl as a cyst buster for 1.5 years on a 2 week rotation. Not familiar with your other med.

You may be experiencing a herx and not feeling well. I wouldn't expect to be 100% symptom free yet. It can take several years.

[Texargent]

Just for an update.. got in contact with Texas Lyme Disease Association and recommended me the Doctor I am already seeing, who is not in Texas...and that most texans with lyme go to. So I called the office and had an appointment with the doc via telephone. This doc decided to stop doxy ¨it has done its job¨¨.. and instead of doxy prescribed me with Cefuroxime, and said to continue with Metronidazole (flagyl) as a cyst buster (been 7 months on it). I asked the doc how to tell the difference between CFS and Lyme...  basically said 3/4 of the people suffering from CFS actually have lyme... and the rest could be having an elevated virus load, and that both conditions can be cured.. and thatr it is a condition or cause caused by infection/disease/etc.
So right now I have been 9 days on cefuroxime adn 7 months on Flagyl... my symptoms TODAY: light sensitivity, lots of neck cracks, swollen eyes, upper back muscle stiffness, and knee/elbow discomfort. Last week I had a period of feeling really good... almost symptom free i could say, but suddenly the symptoms came back... they are not BAD but it really bothers me not to feel 100% symptom free.
In 4 months I will see the doctor in person for a check up, will wait and see what he has to say, hopefully the medication will do its job.
Oh and by the way, its seems like a very lyme-news oriented person, he said a few days ago the CDC finally admited that 300,000 people each year were infected with lyme (instead of 30,000 that they used to state), which is a very promising news in order to accept this epidemic and began researching for effective diagnosis and treatment...

[cave76]

I agree with Rico's statement:
" I haven't heard of a "well known LLMD" who only gives Doxy for 18 months to someone sick for 4 years before diagnosis."

And CFS belongs in the same category as fibromyalgia. Not a 'real disease' although it feels like it to the person.

[Ricobord]

Chronic Fatigue Syndrome is a vague description of a mysterious condition where patients are mildly, moderately, or severely fatigued all the time.  In the U.K., they call it M.E. (myalgic encephalitis) and they have a better understanding of the symptoms and manifestations of it, which is more complex than just fatigue.  Symptoms include a variety of things like a sore throat and rope-like lumps in muscles.

Chronic Fatigue here in the U.S. is almost a catch-all term doctors assign to people who feel crummy all the time and they can't figure out why.  My first chronic symptom was fatigue, followed 6 months later by chronic shortness of breath.  My pulmonologist couldn't find anything wrong with my lungs and thought I had chronic fatigue syndrome. If she hadn't dismissed my increasing heart rate she might have put the pieces together to suspect Babesia.

Researchers haven't pinned down a cause of Chronic Fatigue Syndrome, but signs point to one or more viruses along with immune dysfunction.  One study at Stanford University found hundreds of differences in spinal fluid proteins between CFS patients and chronic Lyme patients.  Stanford also tried a drug specifically targeted at EBV for a small group of specific patients and a handful had substantial improvement, suggesting viruses in the herpes family are the culprits.

A CFS/ME researcher in Europe has found that most CFS/ME patients have excessively high #s of MAST cells, a type of immune cell.  I know someone with CFS/ME and it followed a viral infection. She fits the ME description well.  She feels much better when she follows a gluten free, sugar free diet.  Both can suppress the immune system, and she feels it quickly when she goes off her diet.  When she first got it over a dozen years ago, numerous doctors dismissed her. One told her to go home and take a nap.  (All these years later, she's still disgusted by that guy.)  Doctors today are a little more sympathetic since research has shown it's a true medical condition, not a psychological one.  But few doctors know what to do about it and so most are not very helpful.  Everything I've read seems to show that diet and targeted supplements are the best treatment for true CFS/ME.

But then there's the myriad of other conditions that can cause chronic fatigue.  Who knows how many people with "CFS" written in their charts have something that can be resolved, such as Lyme Disease, Celiac Disease, food allergies/sensitivities, malnutrition, mold overload, parasites, a genetic condition (like hemochromotosis), et.al.

Don't worry too much about the "CFS" label when you have Lyme. Lyme causes chronic fatigue.  The CDC and IDSA insist that "post Lyme treatment syndrome" causes chronic fatigue, but it usually clears up within a year or so.  ILADS docs say ongoing fatigue usually indicates ongoing infection, and such patients nearly always relapse if treatment ends before fatigue does.

I'm sure it's possible to develop CFS while having Lyme, but I think it's far more likely that your chronic fatigue is caused by Lyme.

In re-reading your comments above, I really encourage you to seek another opinion.  I haven't heard of a "well known LLMD" who only gives Doxy for 18 months to someone sick for 4 years before diagnosis.  That's too simplistic of an approach. You need more sophisticated treatment. There are other docs that will do Skype or phone appointments after seeing you in person.   Or perhaps your current doc is willing to consult with another doc more experienced in treating late stage patients.   Hopefully you can make some progress after your next appointment.

[Texargent]

Thanks for your comments guys!! Now i am bringing a new question for debate...
Both llmd i saw wrote on the diagnosis comment page something like " borreliosis" and underneath " CFS" (chronic fatigue syndrome).
Taking into account im lyme positive for igenex.... I think my symptoms are due to lyme.. BUT...  My question is: how can you tell those 2 apart?? They do have a lot in common!!

[mojogal]

When I first got really sick, my herxes cycled every 4 weeks, many people I know have that but now, mine are not in cycles. More random.

The off balance for me was from Bartonella lesions in my brain. That is why they misdiagnosed me with MS. When I found an LLMD, she told me what it really was.

I hope you feel better.

[Texargent]

Ok, thanks so much for commenting guys! When i started this post i was in the " peak" of a flare... Do you ever feel theres a peak?? Then it slowly/suddenly symptoms diminish... It was horrible. Since i started the meds, i noticed an improvemente of my symptoms, since i never had good days... 2 months into doxy began having good days... And flares would arise, but not so strong and not so long... They would last about 5 days... But this last one was long... About 4 weeks feeling bad! Worst symptoms were stiff upper back muscles, offbalance feeling, twitches, burning and crawling sensations around my knees and elbows... On and off... And just pain throughout the inside of my arms..ever feel this way? Is it weird to have monthly short flares and then a huge one out of the blue?? Anyway, i just began to start drinking natural cats claw tea... I buy the bark of the tree at the store... Will see how that turns out.

[mojogal]

Hopefully, you won't need to be on abx for your lifetime but most LLMD would switch off the abx because you can grow resistant.

A couple of us have a mutated gene which makes it harder to detox and therefore we have worse herxes. You can order a gene analysis online at 23andme its only $99 and well worth it. MTHFR is the gene affecting detox. It also gives you other results. If you are interested PM me and I can tell you more.

Good luck.

[Texargent]

Hey! Thanks for replying! I habe been sick for 4 years before starting on meds. Got tested for coincections but i have none... I thought resistance came only if you stopped the antibiotic...anyhow, i am under the care of this well known llmd, and i emailed the office and they said we could arrange a skype conference call since i live in argentina now!
So another questions is... What if you are suppose to be on antibiotics for life... This means you have to rotate the antibiotics? This flare is taking a lot more (3 weeks so far) than the ones i got before (about 5 days)... Strongest flare ever... Weird!

[mojogal]

Agree with Jackie and Rico. You need to be tested for co-infections. I have 2 in addition to Lyme.

Bartonella, Babesia and Lyme. Minocycline is a cousin of doxy. Burascano mentions it as a good one to try, it treats Bart's and Lyme. After 1.5 years it would be good to switch meds.

I take Flagyl and tindamax on a rotating basis for cyst busting.

When I first got very sick, I had flare ups every 4 weeks. I don't anymore.

Another opinion might be a good thing to do.

Keep us posted.

[JackieCalifornia]

And after I posted, I saw Ricobord's comments, which I agree with.

[JackieCalifornia]

You give a good history.

Texas is known for being a hard place to get adequate treatment for Lyme, so good for you for finding a doc who will treat you.  (I am not medically trained, but did have Lyme and babesiosis, so take my comments for what they're worth.)

Doxycycline is the original med used against Lyme.  It is still the common choice in a very recent infection, in which the bacteria have not yet hidden themselves in biofilms where neither the immune system nor doxy can reach them.  NonLLMDs lean strongly on doxy as the medication of choice for just about everything tick-related, it seems, and often do not appreciate the biofilm problem.  

An LLMD will usually treat with two meds against Lyme: a so-called 'cyst buster' which can break through the biofilm, plus an antibiotic to kill the then-exposed Lyme bacteria.

I am guessing that your doc is using Flagyl as the 'cyst-buster' against the biofilm -- that's what I was given as well -- so that sounds good.  However:  doxy for 1.5 years seems a bit long.  Bacteria can build up resistance to medication, and rotating meds is sometimes done to avoid that resistance, and also to use meds that knock the bacteria back a step simply by being different from the last med.

fwiw, I was treated first for babesia and then for Lyme, for a total of 13 months on meds:

-------------------------------------------------
-- for Babesia:
azithromycin/Zithromax and Mepron/atovaquone -- 4 months

-- for Lyme:
clarithromycin/Biaxin and cefdinir/Omnicef -- 5 months

-- drug holiday due to side effects of probiotics--2 months

-- for Lyme:
Zithromax/azithromycin and Flagyl/metronidazole -- 4 months
-------------------------------------------------
This may have been an abbreviated treatment schedule, because I had continuing problems from the probiotics, so my schedule is odd in at least that way.  Truly, every doc and every patient is different, depending on the particular infections, on the person's immune system response to the infections, and to the effect of the meds on the infections.

The mix-and-match of the the co-infections (meaning Lyme plus whatever else the ticks brought along) also changes the meds used and the length of treatment, and the person's immune system is the other wild card.  Nothing is easy in this game.  

I know someone who had infections much like mine, but was treated with no problems at all and pronounced healthy after a bit over a year of treatment, as I recall.

So ... take my comments for what they are worth, and don't be surprised if everyone comes up with a different treatment approach used on them.  (You'll see the word 'protocol' used ... it's used to refer generally to a doc's particular approach of which meds for how long and in what combinations.)

I doubt anyone out there had exactly the treatment approach that I did.  Also, as more is known about Lyme and its evil buddies, the docs change up the meds and combinations of meds.  
--------------------------------------------------
The questions in your last three paragraphs above are all good ones:

-- are the increase in symptoms once a month a Herx, or a flare up of the infection?  If the abx are not effective against what you have, then it could be the regular cycle of the infection flaring up.

-- the twitches, tiredness, and other odd things sound less like a Herx to me than like the flare up of the infection(s), but I am just guessing.  Again I am a little concerned about doxy, doxy, and more doxy.  You can see from the meds I was on that change-up was the name of the game for my LLMD.

-- "Does my ab treatment appear normal?"  There is no normal, really.

-- "Does it seem ok to experience a biggest flare up after a year of treatment?"  Maybe, but lower flares could also be reasonable.

And then I come back to your doc's reliance solely on doxy plus flagyl.  If you have undiagnosed co-infections, doxy/flagyl may not be effective against them.

In your situation, I would consider quietly getting a second opinion from another Lyme doc.  

Others here may have comments too -- let us know what you do, okay?  Best wishes --  

[Ricobord]

Lyme has a life cycle and a symptom flare every 4 weeks or so is really common.  It can appear in both genders, but in women it usually coincides with their monthly cycle.

Given all the symptoms you describe, I'd guess you need something in addition to or instead of Doxy.  Doxy just isn't going to finish off a late stage infection by itself. I know someone who took Doxy only for 3 years and the last 2 saw no improvements. I must say I don't have that kind of patience. If something isn't working, then try something else.

For the first year of my treatment, I was always on two abx for Lyme.  The combined therapy is often more effective. My doc switches my abx when it seems to stop working.  The bacteria are known to develop resistance to antibiotics. As it learns to defend itself against one, you gotta throw a new one at it.  I encourage you to ask your doc about more sophisticated treatment.  You can check out Burrascano's treatment guidelines for some ideas.