So, all the tests were neg. for erlichia, bartonella, and WB lyme IGG and IGM. For some reason the doctor perscribed 2 weeks of ritalin... HOW is this going to help?!?! WFT? is there something i am missing. I feel like at the end of a rope or something.
Posted by seekhelp (Member # 15067) on :
99% of the time ID docs = money wasted and feelings hurt. What conditions do ID docs treat respectfully? AIDS? Why do so many belittle so many patients happily?
Posted by Lymetoo (Member # 743) on :
Yes, you're missing something. It's called an LLMD and a test thru Igenex.
Posted by XxDarkEuphoriaxX (Member # 21420) on :
i have the Igenex IGG and IGM one of them was positive but barely. the 31 epitope was positive. I am going to do this 2 weeks thing to make my mom happy then we are going to go to dr. c in missouri most likely.
Posted by Marie1959 (Member # 24009) on :
I had a similar experience today, Xx, except I received generic Prozac instead of ritilan.
What is up with these ID guys? They seem to be missing the curiosity and doggedness that led them to their specialty.
Let's not give up.
Posted by XxDarkEuphoriaxX (Member # 21420) on :
how does ritalin differ from prozac? ritalin isnt a anti depressant is it?
Posted by Selection10 (Member # 19578) on :
Ritalin is a medication for ADHD. It's a stimulant structurally similar to cocaine.
It's sometimes used off label for excessive daytimesleepiness/narcolepsy, and treatment resistant depression
Posted by calmom (Member # 24054) on :
Sorry no one is listening, seems to be one of the crosses to bear with lyme. I find it ironic that so many of us are considered to not be thinking straight, given anti-depressents etc... and yet we are the ones who refuse to keep doing the same ineffective thing and expecting a different result.
This is second hand from a lady my Dad works with. I talked to her last week while researching different approaches. She had the Igenex Test and the only thing was that 31 band was indeterminent - she knew a lot about the effects of lyme, since it almost killed the man who started the company she works for. She decided to treat it as though it were a definite positive. Part of her thinking was a little bit of positive is still positive. She treated aggressively at a clinic in AZ, but said after three months she was like her old self - that was this past spring - using the follow-up protocol she is even doing better now.
I just did the Igenex test - part of my fear is that it comes back negative. Silly, becasue this not really something I want to have - but that is emotionaly weighed against continuing to wonder. Pretty much regardless of the test I am planning to treat per my LLMD's recommendation. Hopefully the test will confirm and I can feel more confident about what I am doing.
This is craziness..... CalMom
Posted by Keebler (Member # 12673) on :
- You do know that most regular labs don't do the right tests - or always do them correctly.
And that these can be misinterpreted.
Still, the test is not everything.
Yes, Igenex is the most reliable but lyme dx takes into account, history, symptoms and other physical manifestations. You can never count on just the test. Ever.
An ILADS-educated (or an ILADS-member) Lyme Literate MD is best.
Only one in a thousand ID doctors (if that) has the necessary knowledge and skill regarding tick-borne infections. So, unless you've got skill at the lottery, don't bet your life on just any ID doctor whom you've not thoroughly researched and found to be lyme literate.
This IDSA game is rigged so that patients rarely wins.
Don't take your Volvo to a Chevy dealer and expect them to know how to fix it. In a perfect world, all doctors would have the knowledge we need. But since we know the system is broken, we can learn from the mistakes of others.
Find a doctor who knows what you need him to know to properly treat you. That is the hardest part of the battle.
It's also vital to remember that lyme is not the only bad boy ont he block. In addition to many other tick-borne infections, there are several chronic STEALTH infections such as Cpn, HHV-6, mycoplasma . . . and on and on.
A good LLMD should also know about these. Most other doctors do not and do not want to know. -
Posted by METALLlC BLUE (Member # 6628) on :
quote: i have the Igenex IGG and IGM one of them was positive but barely. the 31 epitope was positive. I am going to do this 2 weeks thing to make my mom happy then we are going to go to dr. c in missouri most likely.
That's most certainly Lyme.
Posted by Pinelady (Member # 18524) on :
What they are doing is experimenting with Lyme.
I would not take it knowing what I know now.
Posted by timaca (Member # 6911) on :
were you tested for HHV-6, EBV, Cpn and enteroviruses?
Timaca
Posted by Lymetoo (Member # 743) on :
If either the IgG or the IgM is positive, you are positive for Lyme. Period.
The dr in MO is great. Get after it.
Ritalin? Sheesh.
Posted by XxDarkEuphoriaxX (Member # 21420) on :
i was NOT tested for HHV-6 EVB (mono)? I think ... it was neg. CPn? no enteroviruses? no. I am kinda hoping dr. C will run these tests if I go to him? And RE do the bart. test because I think I may have it instead of lyme... not sure.
yeah i was like what the hell with the ritalin? how is that supposed to help...
Posted by timaca (Member # 6911) on :
Ask Dr. C about those tests....not sure if he is familiar with those tests and which labs they should be run at...
Good luck, Timaca
Posted by Snailhead (Member # 18091) on :
I saw an ID, after I had shown my neuro my CDC positive Lyme test. (Neuro kept repeating: "This isn't Lyme..this isn't Lyme"...). The ID backed him up at the top of his notes: "probably a false positive, just like you said Mr. Neuro. It's only MS, just like you said Mr. Neuro ".
Then, at the bottom of those same notes he wrote: "You may wish to treat with at least two weeks of IV Rocephin".
No, I am not joking. Lets give her a PICC line and treat her with the biggie of IV abx, because she "just" has MS, and "doesn't" have Lyme.
Posted by sutherngrl (Member # 16270) on :
Lyme Disease is a clinical diagnosis!
It is becoming very obvious that most ID docs don't know how to make a clinical diagnosis of LD. They just aren't as smart as they think they are!
You need a Lyme literate doctor. As you treat lyme your test will most likely become more positive. For me it did! The longer I treat the more antibodies show up thus making more bands show up positive.
Posted by XxDarkEuphoriaxX (Member # 21420) on :
He said something about how it gives the body a chance to build up the immune system.. how is this so? sounds sketchy.
Posted by Keebler (Member # 12673) on :
- What is "it"?
But, regardless, trying to build up the immune system is very intricate with lyme and not at all what one might think. More harm than good is done by those not totally lyme literate.
Are you still seriously considering treatment with the ID doctor? -
Posted by XxDarkEuphoriaxX (Member # 21420) on :
the ritlin building up the immune system somehow, idk about it... also havent really had a bowel movement in like 3 days idk if it is related
actually i am thinking about stopping the ritalin because it isnt doing me any good and not going back to the ID doc because I don't think my problem is psychological.
Posted by Keebler (Member # 12673) on :
- If "it" refers to Ritalin:
Just these few cautions, alone, make this a VERY dangerous drug for lyme patients, especially those not being treated for the actual lyme infection:
". . . Methylphenidate should not be prescribed to patients who suffer from severe arrhythmia, hypertension or liver damage."
[my concern is because: Every lyme patient deals with heart rhythm issues, risk of hypertension and lyme toxins definitely damage the liver.]
". . . potential for methylphenidate to lower the seizure threshold."
[my concern is because: Seizures are common for those with neurolyme.]
Methylphenidate (MPH; Ritalin, Concerta, Metadate, Methylin) is a psychostimulant drug approved for treatment of attention-deficit hyperactivity disorder, Postural Orthostatic Tachycardia Syndrome and narcolepsy.
It may also be prescribed for off-label use in treatment-resistant cases of lethargy, depression, neural insult, and obesity.
Methylphenidate belongs to the piperidine class of compounds and increases the levels of dopamine and norepinephrine in the brain through reuptake inhibition of the monoamine transporters.
MPH possesses structural similarities to amphetamine, and though it is less potent, its pharmacological effects are even more closely related to those of cocaine.[1][2]
. . . .
Contraindications
Methylphenidate should not be prescribed concomitantly with tricyclic antidepressants, such as desipramine, or monoamine oxidase inhibitors, such as phenelzine or tranylcypromine,
as methylphenidate may dangerously increase plasma concentrations, leading to potential toxic reactions (mainly, cardiovascular effects).
Methylphenidate should not be prescribed to patients who suffer from severe arrhythmia, hypertension or liver damage. It shouldn't be prescribed to patients who demonstrate drug-seeking behaviour, pronounced agitation or nervousness.[28]
Care should be taken while prescribing methylphenidate to children with a family history of Paroxysmal Supraventricular Tachycardia (PSVT).
Special precautions
Special precaution is recommended in individuals with epilepsy with additional caution in individuals with uncontrolled epilepsy due to the potential for methylphenidate to lower the seizure threshold.[85]
. . . . -
Posted by Keebler (Member # 12673) on :
- While I was composing my last post, you wrote: " . . . thinking about stopping the ritalin . . . ."
Do NOT just stop this suddenly.
There are certain procedures for how to safely do that. Be sure to get expert advice on HOW to do that. It may require slowly decreasing dose over time - even if you just started this.
"Repair the immune system" my ***. Or, shall I say I have serious concerns.
Ritalin can PUSH the body beyond what is safe for a patient with infection who is not getting treatment for that infection.
For those with untreated lyme, the already exhausted adrenal system - and the nervous system - can be shot to the moon with this stimulant.
This can also be very hard on a liver that may already be damaged from lyme toxins.
Be very careful not to overextend yourself and rest as you feel the need. I hope you can see an ILADS-educated LLMD to get this all sorted out soon.
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" -(author's details at link)
As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Excerpts:
Meet the players
The opponents in the battle over the diagnosis and treatment of Lyme disease are the Infectious Diseases Society of America (IDSA), the largest national organization of general infectious disease specialists, (and)
and the International Lyme and Associated Diseases Society (ILADS), an organization made up of physicians from many specialties. ( www.ilads.org )
ILADS, by contrast, asserts that the illness is much more common than reported, underdiagnosed, easier to contract than previously believed, difficult to diagnose through commercial blood tests, and difficult to treat, (especially)
especially when treatment is delayed because of commonly encountered diagnostic difficulties ( http://www.ilads.org/guidelines.html - Accessed April 6, 2007).
. . .
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
- Full article at link above, containing MUCH more detailed information.
----
[Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed in this article due to space limits. Still, any LLMD you would see would know how to assess/treat if others are present. ]
Lyme may not be the issue here but you do need further assessment by a good LLMD to sort this out.
In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about:
I would encourage EVERY person who has received a lyme diagnosis to get the following tests. . . .
- at link.
-
[ 01-25-2010, 09:45 PM: Message edited by: Keebler ]
Posted by Lymetoo (Member # 743) on :
Surprised you even took the stuff.
Posted by XxDarkEuphoriaxX (Member # 21420) on :
well idk why I took it .... heh. just one of those things I guess.
Posted by Keebler (Member # 12673) on :
- idk ?? what does that mean? Idiopathic disconnected ketosis?
-
Posted by XxDarkEuphoriaxX (Member # 21420) on :
i don't know means IDK
one of those younger generation things...
Posted by Lymetoo (Member # 743) on :
Why are you typing idk then??
Posted by Lymetoo (Member # 743) on :
OH>... "I don't know" ????
Posted by Keebler (Member # 12673) on :
- I thought it might be that - but it could also have meant a dozen other things. Just wanted to be sure you weren't taking it for some diagnosis with those initials.
If you don't know why you took it, you may feel like you have to do what this doctor says but he has not yet earned your trust.
If the future, you can look up EVERY medicine for all the considerations and then give it some thought.
Younger generation or not, it is not uncommon to WANT more energy and to think more clearly. I recall BEGGING, crying, pleading with a MD to give me ritalin about a month before I dropped him and found out I had 3 different tick infections.
So, while he was abusing his post as a doctor to not even consider lyme, I'm glad he refused to prescribe the ritalin. With my experience with other drugs, that might have just been what would have blasted me to the moon - and then dropped me like a hot rock.
Lyme can cause ADD and dyslexic symptoms - brain fog, depression, fatigue - and much more.
Lyme also frequently affects the vestibular system (inner/middle ear/balance) and vestibular symptoms can also create all those ADD-like, swirly symptoms - and much more.
Anyway, the point is lyme can cause all sorts of problems. If you have lyme, or other infection, the CAUSE must be treated.
Please promise me that you won't just take any "band-aid" drug that comes along without at least reading ALL about it.
Everything - EVERYTHING that you put into your body now matters greatly. However, there are plenty of doctors who know very little about the liver stress of some of these drugs.
And most doctors have no clue to the complexity and enormous system changes in a lyme patient. Therefore, "band-aid" symptom relief must always be studied for contraindications.
I do hope you can find a good doctor who is well educated. Most doctors simply are not. Some are still very nice people and many not even realize they are so deficient in knowledge about chronic stealth infection. This is not taught in medical school and many state medical boards insist patients are all looney toons.
There is more money in doctors handing out psychiatric labels and psychoactive drugs for a lifetime rather than treating the cause of a vast array of symptoms.
You deserve good medical care. I so hope you can find it. Be sure to talk to those at your local support group. They can help guide you with many practical matters.
Go to the Igenex website above, click on "Lyme Disease" on the left side of the page, then click on "30-31 KDA confirmation" to read about the test.
If you think you have bart, you very well may have lyme and bart...and perhaps other coinfections.
Just like lyme tests, coinfection testing is not fool proof.
Posted by METALLlC BLUE (Member # 6628) on :
Update?
Posted by JunkYardWily (Member # 24271) on :
btw i would stay away from antidepression drugs if your not depressed.
when i first got sick i didnt know what was going on. without having even seen me my dr father instantly diagnosed me as being crazy and prescribed me welbutrin and the results were bad. i went through a week of horrible panic attacks and other major problems until i did a little research and found out its a stimulant that causes anxiety. thats not exactly the thing you want to give someone who is very sick and doesnt know why.
that being said ID drs arent fair. im not even 100% sure i have lyme but it is the only logical dx i have heard for my condition. the first thing the ID dr told me was that i didnt have lyme, why rule out something instantly like that when i told her i was around deer, had a bite, and 3 bands positive on WB.