posted
Went to the CCF (Cleveland Clinic Foundation) today to follow up after seeing the infectious disease. I followed up with my PCP because I was told to, and was under the impression that she was taking me seriously about the LYME. She continued to tell me that my lab results came back negative - EVEN THOUGH on the screening it is equivocal and there are 2 bands on the Western Blot. (I am aware you need 5 for the CDC diagnosis) - but it IS possible that it was too early when they took the test... or TOO LATE... also I have been on abx of many different types - I never felt better than when I was OFF the Bactrim and Nizoral (best when ON the Nizoral) but I felt almost cured after the Bactrim... then it all came back again after another dose of Ceftin.
I really like my PCP - but I asked if she would send blood work to IGENX and she said that the Cleveland Clinic would not let her - (she did however say she would order the blood work and that I could get it done somewhere else, that would perhaps send the lab my work).
So it is not as though she is completely ruling me out... but I can tell she is not literate and does not want to deal with me. I have anxiety. I got this after I went blind in my right eye.
I assume many of you would have the same reaction as I did. But ever since then I have had nothing but pain from doctors who WILL NOT take me seriously because of this. I was so fed up - I finally said, just give me a referal to psych. I can't get in to see a dr there until MARCH!!!!! (how is THAT going to help?!) She also LOWERED my dose of Klonopin 3mg. I went from 5 mg a day to 2mg. It is a little OK because I do not take the full 5 mg... but some days I need to take that... not every day is the same. (Maybe a different medicine is better for me? I am thinking that may be the case).
I just am in tears right now. I really thought she was going to do some research considering the top optic neuropthomoligist in the country said that they can never COMPLETELY rule out LYME and as well as another neurologist.
REGARDLESS OF THE CDC REGULATIONS ON IT!! Why does the CDC have these regulations which are so vulnerable to error?!
I left with a abx for Ambien so I can sleep, my Klonopin dose cut MORE THAN HALF, and Bactroban Nasal Ointment (for staph infection hopefully this will help me to not get these boils?). I don't know what to do. Without insurance it is going to cost me a FORTUNE to see these LLMD...
and I'm not even sure which is the best - let alone the trip itself will cost a fortune. I cannot work because I am in physical pain... the knee pain hurts SO BAD I just don't even talk about it anymore.
My wrist and the vertigo.. I just stop talking about it... when I bring it up many doctor seem irritated and then they start talking about my anxiety.
I can SEE HOW THEY WOULD THINK THAT IS A PART OF IT BUT I CANNOT GET A 104 FEVER AND MENINGITIS FROM ANXIETY. I CANNOT GO BLIND FROM ANXIETY!!!!
What hurts the worst is that in the end of all this, we are all just human beings. Her profession is that of a dr. One day I hope to be able to be cured of my ailments and I would like to work in Psychology.
But people see doctors as almost authority figures (like police) - they are NOT. They have training (some with better training than others) they have good days, and bad days, just like us - they are prone to error.
- but if I GO BLIND... who will help me if this was due to lyme? I'm sure she WOULD treat me if these tests came back with all the bands... Did ALL OF YOU have every band? Could I just be suffering from ONE of the confections and not complete LYME at this point?
Do I have anything to cover my back that will help with a seeing eye dog? That will pay for the occupational therapy? Do I have ANYTHING that will help me here?
These doctors do NOT take you seriously if you have any anxiety or depression history.
I am so disheartened. I really like my primary care. I really really do.
But it is the Clinic that I DO NOT like - they regulate these doctors so much that even if I showed her the studies (assuming she would even have the TIME to read since they overbook these poor doctors so often)
she probably cannot treat me since that guy in Infectious Diseases (who was a jerk to say the LEAST) said he would NOT treat me for LYME EVEN IF
THAT TEST CAME BACK POSITIVE HE WAS STILL GOING TO GIVE ME A LUMBAR PUNCTURE!!!! (WHY?!! If that test came back with 5 bands why WOULD YOU GIVE A LUMBAR PUNCTURE?!!!)
So I guess this is it. My head is in my hands.. I am crying a storm here.. I finally jsut said give me a psych referall - I will go - and I will talk about what I am talking about here. LYME.
Because I KNOW THAT IS WHAT I HAVE. Until I can scrape together the cash ( DO THESE LLMDs take credit card???) then I am going to be upset and sick for a while... please pray I do not go blind in this time.
Oh I am so upset. I thought she was going to at least try something else. She did order another lyme test, but It will come back equivocal AGAIN and the same bands will show up.
AGAIN and she cannot tell me why there are ANY bands. (PS: UPDATE: she just called to say something that the PCR was negative?? I do not know what PCR is?
How full of error are these tests? Why is IGENX so much better? Please help me here.)
She even said maybe not to get the western blot she ordered - but I believe I am going to get it again. I want to know WHICH BANDS show up.
One more thing - I DO REALLY like her - and by Cleveland CLinic's standard SHE HAS done everything to test for LYME. But Cleveland CLinic follows CDC and CDC is wrong for LYME. This is not her fault.
It is poor training and information about LYME which is given to really good doctors. I would recommend my PCP to anyone. She knows what tests to order she is very nice and kind and she does take you seriously -- it's the one in infectious
diseases that seemed to really be a jerk. So... back to natural supplement. And prayer.
HELP!
-------------------- I'll make the most of it, I'm an extraordinary machine Posts: 43 | From Cleveland | Registered: Dec 2009
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posted
You need to see an LLMD. Unfortunately, "regular" doctors cannot be convinced to treat. I would ask for a copy of your Western Blot. It is your right.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I agree. If they are not willing to go with the
latest research it will be their loss. Don't let it
be yours. Find a LLMD.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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It was said to me that not many around the Ohio area are good.
Please if anyone knows of anyone around the Ohio or within a 300 dollar flight...
I will go. Please recommend someone. You can PM I would appreciate it so.
Oh I am so so upset right now.
I want to further that I am not mad at my PCP - I am upset with infectious disease and the CDC.
How can they not take seriously such a terrible disease?
My PCP is doing all she can to help. I'm sure if I asked her to write the blood work and I found a place to go that she would to send out to IGENEX. But IGENEX has not written me back.
-------------------- I'll make the most of it, I'm an extraordinary machine Posts: 43 | From Cleveland | Registered: Dec 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Ambien can cause many VERY dangerous side effects. Please do not start on that.
There are many better methods to help with sleep. I'll be back with links.
Have you talked to people in your local lyme support group? There may be some lyme-friendly doctors in your insurance group. At least that would be a start while you sort out a good LLMD.
In the meantime, you have to read all you can about what you can do on your own to best take care of yourself. Again, I'll come back with some links but sort of hope others will post more suggestions while I rest and eat lunch.
Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Laurajeanne,
I understand. Please know that even if those Dr's decided you had lyme, you would only get short term treatment that would likely not help you much. They would follow IDSA guidelines, not ILADS guidelines.
Lyme is a clinical diagnosis, based on history and symptoms, not a lab test.
Igenex is better. I am CDC and Igenex negative, but I had lyme specific bands on my Igenex WB.
You really need a LLMD. You can post on the Seeking a Doctor board for LLMD's in your state if you haven't already.
From there you can check with LLMD's closest to you to see what their policies are regarding payment.
I have insurance, but it really doesn't help me much, since my insurance doesn't reimburse me for Dr visits and it doesn't include prescription coverage.
If it were me, I just wouldn't waste any more time, effort, money and emotional energy on Dr's who are not listening to you and are not informed.
Your life and health are worth so much more.
I will pray that God will guide you in the right direction.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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posted
I used to fly to New York for treatment ... I also live in Ohio. I believe the flights to La Guardia were less than $300, then I'd rent a car and drive to his office. I'd spend one night and fly back.
He is also willing to work with some phone consultations, but you have to have local blood work done.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Keebler - Thank you as always you have been a blessing. Enjoy your lunch and rest please. I will look at your links when you find enough energy to post them. Appreciate it a lot.
-------------------- I'll make the most of it, I'm an extraordinary machine Posts: 43 | From Cleveland | Registered: Dec 2009
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Cleveland Clinic sucks.
There seems to be air flights from Cleveland to Lancaster, PA for about $210.00 one way... didn't check round trip fares.
There is an excellent doctor there who will run good tests (which you can get at the next building over) and this doc is a specialist for tick borne diseases and the eyes.
And, hold onto your hat....
They take insurance.
Email me with your screen name in the title and I will send you the information.
In the meantime... repeat after me... in your best singing voice..
Cleveland Clinic Sucks, yes Cleveland Clinic Sucks, oh Cleveland Clinic Sucks, yo dee doe doe....
Cleveland Clinic Sucks, Cleveland Clinic Sucks, yes Cleveland Clinic Sucks yo dee doe doe doe.
posted
I'm so sorry you had such a horrible experience. Too many people have had one (or many) just like it, with most doctors not taking us seriously. My own family doctor laughed at me when I told her I thought I might have Lyme.
There are two LLMD's in Hermitage, PA, which I think is probably 2 hrs. drive or less from Cleveland. PM or email me and I will tell you about the one I saw last month. He is so wonderfully compassionate.
A Lyme patient I met in his waiting room told me that she has been to several other doctors for non-Lyme things, and as soon as she told them she was on long-term antibiotics for Lyme, they asked her to leave and refused to treat or even see her for the other thing.
I am really astonished and horrified to hear about doctors treating patients so badly. But you are not alone in having been through it.
Hang in there, okay?
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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posted
Cleveland Clinic is money and egos, nothing more. That place is especially vicious if you are stuck with Lyme and Co.
Posts: 501 | From Cleveland Ohio | Registered: Apr 2009
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Laura, like most of us here, you are learning the hard way that we need to take our health care into our own hands, that doctors out there will not necessarily do what is in our best interest. Sounds like your pcp is stuck with the Cleveland clinic rules.
It's politics - economic benefits from test kits, patents, vaccines, insurance consulting. The Lyme documentary, "Under Our Skin", covers some of that. So does Pamela Weintraub's book, "Cure Unknown."
They say anything and everything to us. Anxiety is not the reason for your health problems. These infections are the reason.
You can call IGeneX at 1-800-832-3200. They can send you a test kit. Then you need a doctor who's willing to sign off on the tests - IgM and IgG Western blot antibody tests and whatever co-infections you want to test for.
IGeneX uses two strains - #31 and #297 whereas other labs may use just one strain. Those two strains, they told me, make it possible to test for Lyme strains from around the world.
Keep in mind tho that not everyone tests positive who has these diseases, so LLMDs treat by history and symptoms.
PCR is polymerase chain reaction. It's an amplification of any pieces of bacterial DNA. However, the bacteria has to be there in the sample for them to find it. You can google it to learn more about it, if you want.
Mangosteen juice, the Ultra blend, stopped my eye symptoms, which were light sensitivity, floaters, eye muscle pain and blurred vision. You can read through the mangosteen thread and decide for yourself whether you want to try any mangosteen product for your eye.
Your other pain discomforts will improve as soon as you find the treatment that works for you. That's the work you do with the LLMD.
Very encouraging here, actually, with the help that has just been offered you.
[ 01-20-2010, 11:32 PM: Message edited by: Robin123 ]
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
I honestly do not know how much longer I will be able to read for.
I am having a lot of light flashes and floaters in my left
I went completely blind in my right eye in a matter of minutes.
If this happens in my left I will be 100% blind.
For the person who asked - I have optic neuritis.
I do not have MS. The only thing I have ever tested with any sig. finding was for LYME.
I need to lay down. My vision is getting really really bad here - the cortisol in your own blood raises and I think it makes my eye worse.
I don't want to go blind. I'm so scared.
-------------------- I'll make the most of it, I'm an extraordinary machine Posts: 43 | From Cleveland | Registered: Dec 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Rest.
Then you can still have fear but if you ACT, that fear will soon turn into dedication to take the best care of yourself as possible and that includes making some calls - or finding someone to make some calls for you.
We really don't have time for much fear when we have to act.
You've been told by Siciliano that she will help you. The action has begun. Let it replace the fear.
Let the atmosphere of healing replace the fear. Let hope and dreams replace the fear. All you have to do is move in a positive direction.
posted
Keebler, i'd like to hear about the dangerous side effects of ambien
Posts: 207 | From NH | Registered: Jul 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- First, since our kidneys and livers have to deal with a highly toxic infection and medicines for that - IMO, it is best not to add to the stuff the liver or the kidneys have to process.
Many pharmaceuticals are very hard on both liver and kidneys. Even many over the counter products are.
Yes, some supplements or lots of those also have to filter through our body but they are generally much gentler and even supportive.
However, again, IMO, my own experience with it and from what I've read, AMBIEN has life-threatening risks. And, if such behavior can be a result of a drug, what is that drug doing to us - inside of the body?
I came upon these articles a while back and saved them. I tried ambien years ago and had terrible reactions. Some do fine. It's good to read all about it first and try other methods that are safer.
There have been many incidents of "ambien accidents" and drivers being charged DUI for ambien in the bloodstream. Having lyme, and the liver being compromised by that, It might take longer for some of us to process this.
karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
laurajeanne,
would you please pm me about the eye doctor and if he was good or what medication you got.Please don't forget.
I need to go there as well.
Next time when this happens brush your upper gum with the electric toothbrush really hard - that helped in my case probably to dissolve a bloodclot. Take it in your bag.
Some people say diluted willard water helpd for the eye, have not tested it and also pycnogenol.
Posts: 1834 | From US | Registered: Oct 2008
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
laurajeanne, stress does make symptoms worse. I know you are scared, frightened that you may loose your sight, but please try to calm yourself for yourself.
Having the CC say you were only a little bit pregnant with 2 bands, oh sorry that was a lyme test and not pregnancy? So I'm sure you had seen posts about CC and their record in the past about lyme & company.
It would of been very convenient for you to have a doctor in Cleveland to treat you, but it doesn't seem to be in the cards.
I hope and pray you have better news and options for a doctor that is going to help you in this journey.
I know your disappointment in the medical establishment today. I lived through it 10 yrs ago and today I'm more educated and I learned some very valuable lessons along the way....
-doctors are not Gods -doctors do not have all the answers & cures -I'm in charge of my healthcare, not a doctor -Use your time & energy to educate yourself don't feel defeated, fill inspired to take care of you -breathe, try to relax, do peaceful things for you
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
Karenl - I wrote you back. I am not sure if what I sent will help you. I hope you will talk to an eye doctor.
MAMIE - Thank you from the very very bottom of my heart. I will write to you when I am seeing better. I will put it all on my credit card, though, I cannot take money I really appreciate the gesture though.
I just need to make the step to getting into a GOOD LLMD. I am afraid to make the trip and spend all the money only to have a bad experience with the dr. And THEN what will all the tests cost? I know it is worth me doing, which is why I will put on my credit card but I just want to make sure I do it RIGHT the first time. So the more I know of who to go to in this area - where I WILL Travel if by that time I can still SEE.
I'm so scared I am afraid I will lose my eyesight by the end of this month. At this rate I am having "snow vision" in my good eye.
That is very bad.
You are right KEEBLER - I must ACT. God give me the strength PLEASE.
I am terrified.
-------------------- I'll make the most of it, I'm an extraordinary machine Posts: 43 | From Cleveland | Registered: Dec 2009
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posted
I had a friend that was on ambien. She was waking with terrible crashing headaches. So much pain she couldn't even sit up.
She was finally told by another doctor, that ambien is only supposed to be used short term.
I agree with Keebler, don't start this med.
I don't sleep well either. If I can lay for 6 hours, I average about 3 hours of sleep tops. I have to move all night because of pain. It sucks - I know.
Do hot baths help you relax some before bed?
I used to use Healing Garden zzz therapy lotion before bed until I got lyme.
Now the only smell I can tolerate is lavender. Some lavender doesn't smell good, but Healing Gardens is good.
Also bath and body works has an excellent lavender aromatherapy oil for sound sleep.
I'm not saying these will completely do the trick, but may help your body relax a bit.
I am also on several meds - anti-imflammatories, pain pills, depression meds and they still don't get me thru a night of sleep.
I really feel for you, I was in tears reading your post. I'm sure the majority of us, know exactly how you feel - we've all been there.
I wish there was something I could do to help, unfortunately - I'm pretty much in the same boat as you ( unable to work due to constant pain, therefore unable to see a llmd because I have no money ).
You've gotten some great responses from very knowledgable members here. They are all like guardian angels.
Laurajeanne - hang in there.
I will keep you in my prayers.
july
Posts: 111 | From northeast Iowa | Registered: Oct 2006
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Don't believe what your pcp told you about the Lyme pcr test. For Lyme the test is only about 4 or 6% accurate. This means that you would need to do about 20 pcr tests to rule out Lyme. If the test is positive it means you have Lyme -- but a negative test doesn't mean much because of the high false positive rate.
Please call the eye doc tomorrow -- don't delay.
I agree that pycnogenol (pine bark extract) might help -- or CoQ10. The eyes need lots of antioxidants.
The Buhner Healing Lyme book lists Stephania tincture as a specific treatment for eye problems. Woodland Essence is one source. Hubby has been using this and it has helped greatly with dizzyness -- I would agree with Buhner that it does cross the blood-brain barrier.
Best wishes.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
I cannot read all replies but guys I just peed blood.
I am going to go to the ER or doctor tomorrow.
It will HAVE to be CCF (cleveland clinic).
I have no other choice.
Please let them hear my voice on this. I have had protein in my urine since this all started. They used to take it serious... then when I tranfered to CCF and had the optic neuritis they stopped. Now they haven't even looked at it and it reappeared with the meningitis.
I just peed blood. I've never peed blood.
-------------------- I'll make the most of it, I'm an extraordinary machine Posts: 43 | From Cleveland | Registered: Dec 2009
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posted
Hi - I just typed in "blood in urine" and clicked on the emedicine page - about 11 pages there of explanations - sounds like all kinds of possible things, ranging from not serious to serious.
It might be helpful to browse through it so you can see the range of issues.
This could also give you a chance to evaluate the parameters of what they're describing and think about whether you've had any symptoms or history similar to anything they're discussing.
I think it's helpful to know something, rather than know nothing and be at the mercy of doctors who can say anything to you, as we've already seen from your situ at this clinic.
Posts: 13116 | From San Francisco | Registered: May 2006
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I think you could have a lot more than just Lyme. It may be worth your while to let them test for
known coinfections as long as you have insurance. While you are waiting to see a LLMD. While at the
same time the testing could be just as bad, because of the lyme, they too may have to be
diagnosed clinically. I would get copies of all tests performed and results. You may find clues
there. If they have not tested for known eye infections, like toxoplasmosis, etc. Those may be
a good place to start.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
laurajeanne~ I am so sorry for your troubles. Please ask the doctors at CC to test you for HHV-6, EBV, and Chlamydia Pneumonia (using Focus Diagnostics if possible).
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
timaca, good idea!
Testing for viruses and other bacteria because they just might have some idea on treatment plan that might help the lyme plan until she gets to an LLMD.
Please tell me CC is capable of that, at least?
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
I peed blood in my urine once. There was so much that they said I must have my period. I told them I didn't have my period!! It looked like more blood then urine. It turned out that it was a bladder infection, which cleared up with antibiotics.
Hang in there!! I would sure try to see a LLMD and maybe look for a new family doctor.
Kathy
-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
There is a doctor in Ohio that had recently come to my attention.
Dr. J. I have a patient report for her as well. She sounds comprehensive, but you'd have to do your homework and call her to find out more.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
lauraj, it really sounds like lyme with the anxiety and pain. Usually there are also coinfections plus viruses too.
It does not matter if the lyme tests are negative, lyme is a clinical diagnosis. But one needs to adress all the coinfections too. That is what the LLMD is for.
Yes, like somone already wrote, maybe ask to get various viruses tested, and other coinfections.
In the meantime, it might be wise to go low-carb as sugar really lowers the immune system. Eat Proteins and vegetables..
Posts: 366 | From Europe | Registered: Nov 2008
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Didn't read everything but saw Ambien mentioned...
...just wanted to mention that Lunesta has worked really well for me. I take pretty low doses of it, only 1 mg. It's nice because it works very quickly.
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
LauraJeanne, I know how you feel. My GP, who tried desperately to get me help locally, finally referred me to Mayo Clinic. They told her that they would not accept me as a patient.She was shocked...if a major research institution won't help, then what next?! I was stunned as well. Apparently, Cleveland Clinic is no better. Incredible! Posts: 283 | From where the ticks are! | Registered: Oct 2009
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