posted
I was diagnosed with lyme approximately 13 years ago when I suffered from severe fatigue and joint pain.
Thankfully my doctor was smart enough to run a series of blood work which diagnosed positive for lyme.
I was placed on doxy for about 2 months and the symptoms slowly went away.
I was symptom free until about two years 2005 in which I started suffering from headaches and depression along with confusion.
I was placed back on doxy for two months and once again the symptoms went away.
In Oct 2007 I started having problems with headaches in the back of the head on both sides, along with severe depression, lack of focus, concentration, confusion, memory loss.
I was once again placed on doxy which appeared to work and everything started coming back into focus, that was until last week and they are slowly returning with the headaches, depression and concentration and just plain foggy.
Where do I go from here? Looking for a doctor that specializes in lyme in Monroe, Co PA.
Anyone else have similar problems?
What other forms of antibiotics are out there?
[ 31. December 2007, 01:05 PM: Message edited by: Bosco8a ]
Posts: 15 | From N.E Pennsylvania | Registered: Dec 2007
| IP: Logged |
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
WELCOME*)!*)! !*)!*!)*!! Since you were so responsive to treatment before I would bet you are again- don't panic- just find a good LLMD!*)! And perhaps you've acquired a coinfection- like babesiosis- that needs to be treated- I would post in the Seeking Doctors section for a doc!! And I wouldn't panic, because hopefully you will get back to normal like you have already doone twice- maybe just with heavier ammunition!*)!*! There are many many kinds of antibiotics that work great with LYme!!! Doxy is just one- Reassuringly, Sincerely, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
| IP: Logged |
posted
Welcome to the LymeNet Family. The people in this group have been an answer to my prayers. Don't want to even imagine where I'd be today without the help I've received here.
I agree with CaliforniaLyme. From the facts you've given, your prognosis should be good.
In my opinion, one of the best sources of info is "Diag Hints & Treatment Guidelines..." www.ilads.org/burrascano_0905.html Print a copy and make notes in the margins, underline, highlight, etc to make it easy to find specific info again.
While you're waiting for an appt with a LLMD (Lyme Literate Med Dr), you could see if your doctor is willing to read Dr B's "Guidelines" and follow his recommendations. I'm impressed that your dr was willing to prescribe 2 months of Doxy and repeat it several times. Maybe (s)he would be willing to work with your LLMD in treating.
Do you know what dose of Doxy you were given per day?
Also, go to Med. Questions and look for "Newbie's Info Links" (or similar title). Scroll down to Co-Infections and read, espcially Babesiosis and Bartonella. Bart can cause lots of neurological problems.
Find topics that pertain to your situation and read, read, read.....
For specific info, use "Search" under Post Reply near the top of the page.
Most of us have no medical background, but will share info we've had to learn from experience. Feel free to ask questions and we'll do our best to answer.
Again, welcome!!
Posts: 4638 | From South Carolina | Registered: Mar 2001
| IP: Logged |
just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Welcome aboard, I cant add a thing to what HAS been posted so again,,,just welcome!! beings--just don
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
| IP: Logged |
In answer to your question Cbb- I have been on doxy going on three months, I take 100mg twice daily. It appeared to be working until last Wednesday when the headaches in the back of the head returned, although not as severe as prior two months before. By Friday the fogginess returned along cloudy vision and depression. I had to pop a xanax as I started getting over anxious and nervous when going out in public...
I will be going back to the doctors this coming Wednesday. My question is are there stronger antibiotics I can suggest too him? He is usually very good about listening and taking some of the information I obtain under advice. Are oral antibiotics better then intravenous or vice versa?
Thanks.
Posts: 15 | From N.E Pennsylvania | Registered: Dec 2007
| IP: Logged |
posted
The Doxy 200mg/day is the typical dose prescribed.
In Dr B's "Diag Hints & Treatment Guidelines..." p.17 says Doxycycline - 200 mg TWICE a day. P. 19: Disseminated Disease Adults: oral therapy until no active disease (no symptoms) for 4 to 8 weeks.
The Lyme bacteria is very complex and difficult to eradicate. LLMDs have found that the stronger dose is recommended.
When the dose is not adequate, bacteria are killed (makes the patient feel better), but the stronger bacteria survive and multiply to the point that symptoms return.
It's the same as taking antibiotics for an ear or sinus infection. If you stop too soon, the infection flares up again.
As for other antibiotics (abx), you and your dr may want to consider increasing the dose of Doxy since it has worked in the past. There are many abx that are used - frequently in combination instead of going to IV therapy. With so many options, the LLMD is very important.
Also- With increased amts of abx, it is imperative that you take enough probiotics to replenish the good bacteria that will be killed along with the bad bacteria.
Info in Guidelines about acidophilus (good bacteria), supplements and nutrition. Take the acidophilus several times a day and always at least 2 hours after the abx. Drink lots of water.
Take a copy of Dr B's Guidelines to your dr on Wed. Some people have found that their local doctors are willing to follow Dr B's Guidelines.
Although this is good, it does not take the place of being evaluated by a LLMD. The LLMD is knowledgeable about Co-Infections, too. Since many people have to travel to see a LLMD, the best plan is to have your local dr work with the LLMD.
Posts: 4638 | From South Carolina | Registered: Mar 2001
| IP: Logged |
posted
sorry to say but you won't find any LLMD's in the Poconos or Lehigh Valley area. You'll have to travel into NJ or down to the Philly area for help. dch
Posts: 136 | From Eastern, Pa | Registered: Sep 2007
| IP: Logged |
pmerv
Frequent Contributor (1K+ posts)
Member # 1504
posted
I went back to the my primary PCP on Wednesday and he took me off doxy and now has me on amoxicillin 3500mg per day for 30 days.
He said if I do not see a difference in two weeks that I should get the opinion of an infectious disease specialist.
So far no change, still have severe headaches in back of head, I feel out of sorts like walking around with medicine head with no concentration.
Posts: 15 | From N.E Pennsylvania | Registered: Dec 2007
| IP: Logged |
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Your symptoms now sound VERY MUCH like BABESIOSIS btw, were you tested for that???
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
| IP: Logged |
posted
Not to sound ignorant but I do not know what that is?
Posts: 15 | From N.E Pennsylvania | Registered: Dec 2007
| IP: Logged |
lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
It is one of the many co-infections that can be transmitted along with Lyme Disease.
In my opinion you should avoid the Infectious Disease doc and look for a LLMD. Yes, you may need to travel a bit, but it will be soooo worth it in the long run.
ID's are notorious for being misinformed about Lyme Treatment.
Welcome and good luck!
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
| IP: Logged |
bettyg
Unregistered
posted
bosco, here you go; file this list for future reference, and just print yourself off a copy now to put in your drs. file.
Lyme Disease Symptoms List 1. Unexplained fevers, sweats, chills, or flushing 2. Unexplained weight change--loss or gain 3. Fatigue, tiredness, poor stamina 4. Unexplained hair loss 5. Swollen glands: list areas____ 6. Sore throat 7. Testicular pain/pelvic pain 8. Unexplained menstrual irregularity 9. Unexplained milk production: breast pain 10.Irritable bladder or bladder dysfunction 11.Sexual dysfunction or loss of libido 12.Upset stomach 13.Change in bowel function-constipation, diarrhea 14.Chest pain or rib soreness 15.Shortness of breath, cough 16.Heart palpitations, pulse skips, heart block 17.Any history of a heart murmur or valve prolapse? 18.Joint pain or swelling: list joints_____________ 19.Stiffness of the joints, neck, or back 20.Muscle pain or cramps 21.Twitching of the face or other muscles 22.Headache 23.Neck creeks and cracks, neck stiffness, neck pain 24.Tingling, numbness, burning or stabbing sensations, shooting pains 25.Facial paralysis (Bell's Palsy) 26.Eyes/Vision: double, blurry, increased floaters, light sensitivity 27.Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity 28.lncreased motion sickness, vertigo, poor balance 29.Lightheadedness, wooziness 30.Tremor 31.Confusion, difficulty in thinking 32.Diffculty with concentration, reading 33.Forgetfuiness, poor short term memory 34.Disorientation: getting lost, going to wrong places 35.Difficulty with speech or writing 36.Mood swings, irritability, depression 37.Disturbed sleep-too much, too little, early awakening 38.Exaggerated symptoms or worse hangover from alcohol
The following signs/symptoms may be present in those infected with Babesiosis: Fatigue Arthralgias Myalgia Drenching sweats Headaches Emotional lability Depression Dark urine Splenomegaly Dizziness Nausea and vomiting Cough Dyspnea Fever Chills Hepatosplenomegaly Jaundice Malaise Shortness of breath Bleeding tendencies, bruising Thrombocytopenia Hemoglobinuria Hyperesthesia Pulmonary edema Encephalopathy Low to normal range leukocyte counts Possible elevated levels of dehydrogenase, bilirubin, transaminase* Anorexia Approximately 25%- 66% of Babesia patients are known to be co-infected with Lyme disease. These symptoms may continue for long periods of time, decrease, then return. A low Babesiosis titer (IgG) often indicates a chronic infection. An acute or current infection may show a higher reading on the IgM test initially. There are over 100 species of Babesia in the United States but only ONE or TWO species are currently checked by commercial labs.
BRAIN: Encephalopathy may occur 1-6 weeks after the initial infection and is fairly common in patients with Bartonella. Note: Approximately 50 percent of patients who develop Encephalopathy can be affected by seizures (from focal to generalized, and from brief and self-limited to status epilepticus). Headaches, Cognitive Dysfunction, and CNS Lesions may be evident.
RASH AND LYMPHADENITIS: Erythematous papules (red splotches or slightly raised red spots) may develop. Such papules occasionally occur on the lower limbs but are more common on the upper limbs, the head, and neck. The papules may appear on the skin or mucous membranes. Bartonella may also cause subcutaneous nodules, with some bone involvement possible. The nodules may show some hyperpigmentation, be tender, fester, and/or be enlarged or swollen, but not always.
EYES: Conjunctivitis, Bartonella Neuroretinitis, Loss of Vision, Flame Shaped Hemorrhages, Branch Retinal Artery Occlusion with Vision Loss, Cotton Wool Exudates, Parinaud's Oculoglandular Syndrome, and Papilledema. BONES AND MUSCLES: Osteomyelitis, Myositis, Osteolytic Lesions (softening of bone), Myelitis, Radiculitis, Transverse Myelitis, Arthritis, Chronic Demyelinating Polyneuropathy.
HEART: Endocarditis, Cardiomegaly. Possible lab findings: The following may show up during standard testing: Thrombocytopenia, pancytopenia, anemia, elevated serum alkaline phosphatase level, elevated bilirubin, abnormal liver enzymes. X-ray of the bone may show areas of lysis or poorly-defined areas of cortical destruction with periosteal reaction. Cardiomegaly may show up on a chest X-Ray.
Biopsies of lymph nodes reveal pathology often indistinguishable from sarcoidosis.
Reports of biopsies strongly suggestive of lymphoma do occur. Tests occasionally show an enlarged liver with multiple hypodense areas scattered throughout the parenchyma.
IP: Logged |
posted
I went to the infectious disease doctor last Thursday for my firt evaluation. I was hesitant and almost cancelled do to all the reading and low success rate.
Well I went with an open mind..
He was very nice and seemed to have a lot of knowledge of Lyme.... He took one look at my MRI and said this is a no brainer...
He said based on symptoms and his physical exam that it is definate chronic lyme and needs to be treated with heavy doses of IV antibiotics. Was happy to hear that...
Hard part he said was getting clearance through health carrier provider as they will not recognize and 99% of the time will not pick up. He said if you have blue cross blue shield that they automatically deny.
Well I got the call this afternoon and to my surprise my carrier is picking up 4 weeks to start. I am being placed on 2grams of Rocepthin a day.
Hopefully this is a step in the right direction.
Is there anything that I should be aware of when doing this?
Have there been good results with this form of treatment?
Doctor also ran an bunch of blood tests to see if there are any other co-infections associated with lyme. I got 4 viles of blood taken yesterday. I probably now have a iron deficency.
Posts: 15 | From N.E Pennsylvania | Registered: Dec 2007
| IP: Logged |
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
YOU ARE BLESSED!!! Sounds like a great doc!!!
Yes, on Rocephin drink lots of water!!! You can get sludge in your gallbladder from IV Rocepihn but they found in 2 studies things that suggest this is heightened or may happen from dehydration- so drink lots of water*)!! (& the sludge is transient unless you continue on Rocephin, it's a precipitate which goes away). IV Ropceihn saved my life and restored me to good life!! I hope it does the same for you*)!!!! Bestest wishes, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
| IP: Logged |
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!
![[shake]](graemlins/shake.gif)
![[hi]](graemlins/hi.gif)
and good luck!
![[Wink]](wink.gif)
Printer-friendly view of this topic