Regarding Lyme's Disease

ticker

Hi highonserenity, welcome to the board!

What dose of Doxy did you take and how long did you take it? Although only about 50% of people who have Lyme get a rash, a bulls-eye rash is a definite sign of Lyme. Many doctors follow outdated treatment protocols. It is possible you did not receive long enough or aggressive enough treatment.

It is very important to see a knowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols. Besides Lyme, ticks can transmit several co-infections including Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. Many people who have Lyme are co-infected, and it may affect treatment choice and progress. It is important to be tested for these by a Lyme reputable lab such as IgeneX in Palo Alto, CA. California has a specific strain of Babesiosis called WA-1.

Lyme and Babesiosis can cause heart symptoms. I also had low potassium from Lyme, but I do not think it is a common problem. Are you in southern or northern CA? Would you like a doctor recommendation?

It is also important to learn as much as possible. I recommend reading Dr. Joseph Burrascano's 2005 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses. He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols. I also recommend the book "Everything You Need To Know About Lyme Disease (2nd edition)" by Karen Vanderhoof-Forschner.

Hang in there okay? Good help is available, and you are not alone.

dkysh3

Ticker--can you help me understand a little bit more about coinfections? i have read a lot of posts on them and am curious- how are they tested for and what additional symptoms are experienced because of them. my son is 13 was diagnosed w/ lyme and has swollen right knee, elbow and periodic right jaw pain. (suspect he was bitten late summer/early fall-never found a tick or rash but we vacation in East Lyme) seeing a pediatric rheumatologist in a few days. would you suggest trying to see an infectious disease doctor as well? he was just switched from doxi after 2 weeks as no improvement was seen and is now on ceftin and a prescription anti-inflammatory. one last ?, do you know if the arthritic issues can be a long term thing? THANKS!

ticker

Hi dkysh, welcome to the board!

I am sorry your son has Lyme disease, but it is good he has been diagnosed. Getting tested for the co-infections is very important. It is estimated that 60% of people who have Lyme disease are co-infected. Having them may affect treatment choice and progress. As someone who has had several co-infections, I know firsthand how important it is to know if they are present.

The co-infections are Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. It is important to be tested by a Lyme lab such as IgeneX in Palo Alto, CA. Many Lyme doctors use this lab. They can test for everything except Mycoplasma. MDL in NJ is a good lab to test for this.

Some of the symptoms of Lyme and the co-infections can overlap. Babesiosis is a malaria-like protozoa illness that invades, infects, and kills the red blood cells. Symptoms include fatigue, night sweats, chills, fever, shortness of breath, heart palpitations, headache, dark urine, muscle pain, joint pain, nausea, and jaundice. Treatment is an anti-malarial combined with an antibiotic--often Mepron with Zithromax (or Biaxin or Ketek).

Ehrlichiosis is a bacterial infection that invades and infects the white blood cells. There are two types of Ehrlichiosis: Human Monocytic Ehrlichiosis (HME) and Human Granulocytic Ehrlichiosis (HGE). Symptoms include malaise, fever, sweating, nausea, dry cough, headache, muscle aches and pain. Treatment is most often Doxycycline.

Bartonella also known as cat-scratch fever is a bacterial infection. Symptoms include swollen, painful lymph nodes, muscle and/or joint pain, nausea, vomiting, chills, anxiety, insomnia, red rashes. Treatment is often Levaquin or Rifampin.

Mycoplasma is a bacterial infection. Symptoms include fatigue, breathing problems, headache, muscle pain and soreness, nausea, lymph node pain, and cognitive problems. Treatment is usually Doxycycline, Minocycline, Azithromycin, Clarithromycin, or Ciprofloxacin.

It is very important to see a knowledgeable doctor. Often, infectious disease doctors are not the best to see for tick-borne illnesses. Many doctors do not understand Lyme and treat with outdated protocols. It is great that you are in CT. The best Lyme pediatrician in the country is in New Haven, CT: Dr. Charles Ray Jones. He sees patients from all over and has helped many children. I highly recommend calling his office for advice.

When getting treated for tick-borne illnesses, it is normal to feel worse before feeling better and it can take time. With proper treatment, his symptoms should resolve. Most Lyme doctors will treat until a person is symptom free plus at least two months longer.

Be aware of the Jarisch-Herxheimer Reaction (herx). Often, when people who have Lyme take antibiotics, their symptoms become worse or they get new ones. When the antibiotics kill the bacteria, toxins are released making them feel sicker. It can be very scary when it happens, but it is a good sign the antibiotics are working. Although it can vary individually, many people experience this at the beginning of treatment and every three to four weeks.

It is a good idea to document your son's symptoms daily. One way to do this is to list the three main symptoms he has each day and a numerical rating of their severity, from 1-10. Over time when you review this, you can see when his herxes occur and how he is responding to the meds.

It is also important to learn as much as possible. I recommend reading Dr. Joseph Burrascano's 2005 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses. He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols. The co-infections are discussed there too. I also recommend the book "Everything You Need To Know About Lyme Disease (2nd edition)" by Karen Vanderhoof-Forschner.

dkysh3

Ticker
thank you so much. what i have learned on this message board in a few days far exceeds my expectations. your information and advice is very much appreciated. i was not able to find the book by Dr. Burascano yesterday and the book by Karen Vanderhoof-Forschner i was told is no longer in print but could be ordered new or used. i did pick up "coping with lyme disease", 3rd ed by Denise lang with Kenneth Liegner, MD. the quick reading i did yesterday aligns with your feedback and even suggested the daily health log w/ the 1-10 rating approach which i will do. thanks for the info on the CT dr. i will call him tomorrow.

the info you provided about herx concerns me in that my son's pediatrician was quick to switch him from doxy 100mg to ceftin 500mg (2xday) and added an antiinflammatory to the mix (naproxen/anaprox 275mg-2x day) as a result of repeat labs done on 1/16 and then 2/5 when his symptoms seemed to worsen (elbow swelled, intermittent jaw pain and extreme exhaustion- missed several days school!) key stats w/ high/low findings and changes:
MCV 76.8 (78-98) down from 79.8
Platelet 511 (150-440) up from 342
Sed rate 65 (0-15) from 52
CRP 25.2 mg/L. results indicate >8 non cardic inflammation and >3 artherosclerotic risk is high....no idea what these mean!

based on your experiences do you think the antibiotic switch was premature and also do you think the anti-inflammatory prescribed will mask his symptoms ?

thank you!!!

ticker

Hi dkysh3, you are welcome!

Dr. Burrascano's 2005 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses is on-line, it is not a book. You should be able to get "Everything You Need To Know About Lyme (2nd edition) on ******.

It can take time to tell if an antibiotic is working. How long was he on Doxy?

I am sorry, I don't know what his test results mean.

Bill S

dkysh3

You can ******** Dr B's guidelines here:

http://www.lymediseaseassociation.org/drbguide200509.pdf

dkysh3

hi. he was only on the doxi for 2 weeks give or take a couple of days and his pediatrician switched him to ceftin because his sedimentary rates (measure inflammation) were still elevated. We'll see what the rheumatologist says Tuesday. Im hoping the switch was the right move. I will also try to contact the physician you recommended, thanks!

ticker

Hi dkysh3. I do not believe that two weeks on a med is long enough to see how effecitve it is. I think that SED rates can flucuate during treatment. Lyme disease can sometimes cause elevated liver enzymes also.

I am not familiar with children's dosages. I suggest comparing your son's dose to what is recommended in Dr. Burrascano's treatment guidelines and asking the Lyme pediatrician when you call his office. Many doctors follow outdated protocols for treating tick-borne illnesses. These diseases need to be treated with much stronger treatment than many other infections.