posted
Are we still dealing with Lyme here? Looking for advice on a doctor who can help us.
On Wednesday, May 30, we were at our lake cabin near Louisville, KY, and Bruce noticed a circular rash on his chest and remembered pulling a small piece of a tick (he thinks?) from the same area a couple of weeks previous, maybe mid-May. The rash looked like ringworm to me and he had no other symptoms, so we decided to wait until we went home to Louisville on Sunday to have it checked out.
On Sunday, June 4, two doctors at Prompt Care confirmed that it looks like Lyme Disease. They told us that Bruce would probably feel worse before he felt better, but if Lyme disease is treated with antibiotics such as doxycycline, symptoms usually go away within 3 weeks of treatment
On Friday, June 9, Bruce was feeling pretty lousy, but went to see his regular doctor, Dr. Neider, to let her confirm the diagnosis. She did, based on the bulls eye rash, and she confirmed that he was taking the right dose of Doxycycline -- 100 mg twice a day. She also ordered blood work to confirm the Lyme Disease. (By the way, in my internet research since then many docs say that 100mg x 2 is not strong enough to knock out the lyme bacteria?)
On June 11, Bruce noticed two small patches of blisters to the left of the tick bite site, but no pain. We looked up Lyme Symptoms and learned that you can sometimes have rashes away from the tick bite so we just thought it was another symptom and ignored it (we later learned it could have been Shingles).
Bruce continued to feel bad -- weak, lethargic, achy joints, low grade fever, and then on June 12, he began to feel so nauseous he couldn't even keep water down. That night, we went to the ER to get him rehydrated and some phenergen to stop the nausea. We weren't sure if this symptom was from the Lyme or the strong antibiotics (possible Herx reaction?). We were released home the next morning and Bruce slept most of the day and seemed to begin improving from that point on.
On June 15, Bruce said that he felt good enough to make a planned trip to Des Moines for his Uncle's 80th birthday and it went surprisingly well. Other than a few brief bouts of nausea, Bruce seemed to be growing stronger each day, although he still tired easily. We flew back home on Sunday, June 18 and Bruce went to work on Monday.
On Friday, June 23, Bruce went back in to see our family doc for a follow-up and she told him the Lyme tests she did on 6/4 came back negative. Maybe we did them too early? She wants to repeat the test (this one came back later negative too). Bruce tells her he is having trouble urinating. She recommends he see his urologist and makes an appt for July 5. Bruce think it's his prostate, but he's only 53 yrs old.
June 25: Bruce has not been able to pee very well for several days and this weekend he started having some numbness around his groin area and strange sensations on the soles of his feet, so he finally let me take him into the ER on Sunday afternoon when he said even his butt cheeks were numb. A urinary catheter relieved 2,000 CC's (the nurses were amazed!) and he felt much better, but he still had the numbness, so they admitted him about 2am. After consulting with an infectious disease doc, a urologist, a neurologist and the admitting doc, Bruce had an MRI and they did lots of bloodwork. MRI was clear, but they decided to admit him in case the numbness got worse and to do more tests.
June 26: Another MRI this morning, this time with contrast looking for any spinal cord issues. Results show only a very small area on his lower spine that may indicate some type of infection. A quick physical exam by the infectious disease doc resulted in her best guess being that he has shingles. He had the two small patches of rash on his side last week that is now scabbed over, but no pain. When questioned, the ID doctor totally disagrees that Lyme has anything to do with this. She says after 3 weeks of Doxycycline, he is cured of Lyme ``In Kentucky, people do not end up in the hospital from Lyme Disease.'' She thinks the shingles virus has traveled from the nerve to cause some inflammation in the spinal cord causing the numbness. She and the neurologist order a lumbar puncture (spinal tap) to check for any infections that may be causing the numbness.
June 27: Preliminary results from spinal fluid show only two negative readings -- high protein (101) and high lymphocytes (79%), indicating some type of infection. Results of Lyme and other types of infections will not be back for a few days. They go ahead and start IVs with acyclivor (anti-viral) for the shingles, a steroid (Solu-medrol) for the swelling in the spine, and a strong antibiotic (Rocephin) for Lyme (or any other bacterial infection). And they admit they still do not believe this is the Lyme disease, but they are still guessing what is causing this.
I do an Internet search for CSF (for spinal fluid), lymphocytes and protein and come up with a website that lists Lyme as the number one possible diagnosis (all others were types of meningitis and other diseases that don't fit his symptoms). This is very frustrating.
June 28: Still no diagnosis. It looks like they will let us go home after they teach him to self catheterize, and wait for the rest of the test results before we make any changes to his meds. The neurologist says that even if we can relieve the swelling in the spinal cord, it could take several weeks for the numbness to subside, but it SHOULD over time. Encouraging, but no promises.
June 29: Still all test results are negative-- including the one for shingles! The only test we don't have back yet is Lyme and the doctor said it would be in today or Saturday and she would call us. So, basically we still don't have a diagnosis for the infection yet. The Infectious Disease doctor released us home on IV Rocephin (2gm) every 12 hours for 7 more days and a pill for Acyclivor (800mg) 4 times a day. Not sure why we are still on the Acyclivor given the test for viral infection was negative, but frankly I want to cover all bases too at this point.
(The Visiting Nurse came last night and taught me how to flush the IV in his hand and push in the Rocephin every 12 hours. Very easy, thank goodness.) She will come back in 3 days to replace the IV needle and hopefully that will see us through the 7 days. We see the urologist, the neurologist and the infectious disease doc in follow-up visits on July 6.
Bruce still can't pee so he's doing in/out catheter every 4-6 hours. He's totally frustrated with it, but he's doing it and it's working. He tries to go by himself each time before he uses the catheter. He is also now complaining that he can't hear well from his left ear.
July 6: We are so disappointed and frustrated. In our follow-up visit today, the Infectious Disease doctor told us all tests she had run had come back negative, including the one for Lyme, and that since Bruce is not improved after being on the Rocephin for 10 days, she does not believe there is an infection causing this. She said there is nothing more she can do. I did show her my Mayo Clinic recommendations that a person with Lyme who has neurologic symptoms should be on Rocephin for 14-28 days and she VERY RELUCTANTLY agreed to run them for 4 more days. She thinks it is a total waste, but she did it. She also called the neurologist and asked him to see us sooner (than our Aug appt) because the symptoms were no better and she believes it is neurologic. She said this is very serious and that we may even want to consider going somewhere else for evaluation (like Mayo - but I think she said that because I had the Mayo information with me.)
We did get in to see the neurologist about 2 hours later. Dr. Alt is a D.O. in Neurohealth. He did a full-exam on Bruce and reviewed his records and MRI reports and .... threw up his hands too! He said this is transverse myelitis with no apparent cause. Transverse myelitis just means that a portion of the spinal cord is not functioning like it should. He said it also can mean the body's autoimmune system is causing his own cells to attack his body. He said all we can do is wait and watch. It could get better in weeks or months -- or years -- but probably it WOULD improve. He did say he was familiar with Lyme, and practiced for a while in the northeast, but did not seem to think it is related to what is happening to Bruce.
I asked him then about possibly going to Mayo or Cleveland Clinic and he agreed that it could be a case they would see...and he would support us getting in there.
July 10: No change in Bruce's condition. He feels pretty good overall, but tires easily and still has to self-catheterize due to the numbness. He said yesterday that his left foot felt a little more normal, but later it felt the same. He finished his last dose of Rocephin and I am very worried that 14 days is not enough to kill the Lyme bacteria. He flew to New Orleans today and will try to get back to work this week.
July 12: We now have an appointment at Cleveland Clinic for July 21 at 2pm to see Dr. Lederman in the Neurology Dept.
Anyone know if this doctor is likely to be Lyme knowledgeable?
-------------------- Kathy in Louisville Posts: 3 | From Louisville, KY | Registered: Jul 2006
| IP: Logged |
Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Hi, Kathy and welcome to Lymenet!
I read your post about Bruce and can only imagine how concerned you all are at this point.
Actually, in a lot of ways, his symptoms sounded like mine about 2 years ago. I was dealing wtih numbness in my foot and was sent from doctor to doctor in search of an answer. Each specialist I saw ran tests (including brain MRIs), and all of them came out negative.
At one point, they even told me I was fine, despite the fact that it was becoming hard for me to walk.
My first Lyme test was also negative. I didn't understand then that there are labs that test more sensitively for the bacteria than others. Most of the more commonly used labs have a pretty high percentage of inaccurate readings.
The exhaustion I had also waxed and waned in the beginning, but over the months of misdiagnoses, I got increasingly weaker and developed more and more symptoms.
Finally, thanks to information I got on this site, I found what's called a Lyme Literate doctor (LLMD for short). These are doctors recommended by reputable Lyme organizations. They are only rarely in mainstream medical facilities, and they are very very familiar with the complexity of tick-borne diseases. They also use the more sensitive labs (like Igenex in California). My first igenex test came back a strong positive, confirming what I already suspected.
it's great that Bruce has been on antibiotics, but it is a much lower dose than is commonly recommended for Lyme treatment. But the thing with the Lyme bacteria is that they continue to wreak havoc in the system until they're effectively addressed.
My suggestion would be to see if there's a Lyme Literate doctor in the area. You can ask in the section of this forum Seeking a Doctor. Or you can search in support groups (in the menu to the left) and see if there are support groups in your state or adjacent states. Contact them and ask them for a list of recommended doctors.
You might also want to have Bruce keep a daily, detailed record of his symptoms. This can make it much easier for the doctor -- and for you -- when you have your first appointment. There's a pretty comprehensive and printable list here: http://www.lymepa.org/html/ldasepa_useful_information.html
Again, it's really good that you found us; please keep us posted about Bruce's condition.
Andie
Posts: 2549 | From never never land | Registered: May 2005
| IP: Logged |
robi
Frequent Contributor (1K+ posts)
Member # 5547
posted
I have no personal experience with the Clevland Clinic but have not heard good things about them diagnosing Lyme.
You really need a Lyme Literate doctor.
To find good medical care for Lyme disease, it is crucial to locate a doctor who is educated about Lyme disease, and experienced in treating this complex illness. Such physicians are referred to in the Lyme disease community as Lyme-literate MD's (LLMD), and can be found through the help of Lyme disease support groups or by posting in seeking a doctor section of this site. http://flash.lymenet.org/ubb/ultimatebb.php?ubb=forum;f=2
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey there...
I just stopped in for a minute to check on a specific post.. and for some strange reason my clicker hit this post accidently... and it opened.
It must be a "sign"?
Yeah.. I am weird.. ask anyone here. HA!
Anyhow..
Two things.. very important.
1. Bartonella
2. Hold the Mayo!
When I say to HOLD THE MAYO... that means the Cleveland Clinic too, by the way. If I were you.. knowing what I know now...
I would get an appt ASAP with Dr. S in lower, real low PA... KINDA near you all. Robi will have the contact info... so you can bug her.
Do yourself a favor. Look up.. do a search here on the Mayo Clinic.. and one on Bartonella (feet, prostate, blister rash).
I can't go into telling you all I am thinking and know.. my fingers won't last that long.. but to avoid even more run around... and to get hubby better sooner and stop progression of these diseases...
Please consider my suggestions.
OH.. and I know I only said I would say 2 things. But can I please add ONE more?
I am sorry he feels bad... glad you are sticking with it to find answers.. and..
You can tell the idiots you've seen so far to...
"GET WITH THE FREAKING PROGRAM!"
There are too many being disabled and dying. If a 12 year old can figure this out... they should be able to also!
OK.. that was 3 more things I added... sorry! But I just hate to see folks get bad bad bad information from these ducks!
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Big Grin]](biggrin.gif)
Printer-friendly view of this topic