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Out of range WBC is pretty common for most of us and would only a reason to stop if it goes really low.

Sounds like your LLMD has no concerns regarding continuing treatment with your haptoglobin levels.

Yeah heme said stop tx if neutrophils get very low. Like below 1.
She didnt care at all about the platelet count. Ive always had low platelets. She was pretty convinced the labs were from whatever infections i have and the antibiotics.
As an MD who deals exclusively in blood cancers, I trust her. Its just unsettling for me as previously I had no lab abnormalities really.

JDB15 said...
Did any of you guys second guess your diagnoses at any point? I just worry that being seen by a lyme MD means everything gets attributed to lyme and potentially something else could be missed...months and months of abx and worsening symptoms only to discover you have missed the boat...

The stress of that is also worsening things...

I'm working on trying to get through Stephen Buhner's 2nd edition "Healing Lyme", and he states how much he dislikes the reference to "Lyme" or Lymes". He prefers the more accurate and specific word of "Borrelia" which leaves room for the co-infections which are often there too.

That right there separates most of the regular Doctors from Lyme Literate, ILSA trained ones. Because while Chlamydia, Babesia, Rickettsia, Ehrlichia, Anaplasma, Mycoplasma and Bartonella are not unknown to the medical world, they may not be aware of the common denominator between them all.

Throw in Candida, the MTFR gene, and a host more dots that can connect, and what you have is a zip lock bag of symptoms much like a 1000 piece picture puzzle that can be pretty tough to put together. Especially when you don't know what the picture is supposed to look like when it's done. That's a tough medical problem for any Physician to figure out without dedicating his whole practice to it.


Some of us didn't get a positive diagnosis of Lyme. In the 90's or before we "didn't have Lyme in this State".
But we did. I didn't second guess it for myself, but not too long later there were local publicized stories of others with it.

I was one of those that was told repeatedly either it is "Fibromyalgia", or "all in my head". I went on treated for 30 years.

I seconded guessed me last year after getting a cdc pos. RMSF diagnosis. Twice. I have both, and probably Bart, and probably Babs, and some other issues, but only because of what I have learned here and on line medical and research documents and testimonials that matched my symptoms.

Hi, JDB... I have the sickly malaise flu-like feel like crap thing. I sit and just sweat, then the chills at odd times, like when I am sweating in the FIR sauna. It's so bizarre. LLMD says likely babesia and buhner herbs have proven bartonella for me, even with negative test results.

I did get into full remission for about a year, and it was wonderful. I think that saved my sanity on wondering if it was something else... I second guess now less often than I did initially.

Like you, I also work out, trying for minimally 2 days of lifting per week. Lately, I have been trying to add in very short HIIT workouts. 2 30 second cycles instead of 8. I'm not sure yet how it's affecting me. It's that new to my regimen. I am pretty stubborn, and exercise is one of my saving graces of sanity... so if I can't physically work out, depression sets in quickly. I try to be happy if I can do something, even a little bit... but it's not possible every day. I hope someday I'm unstoppable!!!

Thanks. What made the test for it? You seem to know a lot about blood results - don't mean to hijack but do you know what LOW: Creatine Serum, Sodium Serum, and Chloride Serum mean on a CBC?

All are well below the lowest number in normal range. Trying to figure out if Lyme related?

Huddie said...
JB,

How does Haptoglobin show up on a CBC? What is the abbreviation?

For most of you what is your WBC? I know lyme goes lower.

Since treatment, my WBC count is usually in the high 3's.

But at one point it dropped to 2.6 (or was it a bit lower - can't remember) I went to my GP and asked her at what point I need to wear a mask in public...she said I wasn't even close.
Closer to 1 she said.

Thanks Girlie,

Glad you don't need a mask yet. I was wondering what the 'worry' number is. I have been tracking mine and my son's. My son's was a 7 and down to a 6 now. Mine is down to 4.7.

I'm so glad you got yours up! You are going in the right direction.

Don't be too jealous it seems to plummet with each new test! You will get back up there.

JD, Question: You mentioned you are supposed to move. That can be extremely stressful. I wonder if you brought on a type of herx?

We put our weekend home on the market (to get away from lyme country). We got an offer immediately and buyer wanted to move in by Christmas. I was so overwhelmed thinking "How will I move?" I relapsed. We took the house off the market and I felt instantly better. A month later my son was diagnosed with Lyme and I got worse again.

I wonder if you can somehow release the stress of the move to California - if you will get better. Must sound hokey to you but thought I would offer it up.

JBD - I know that you are a doctor but I imagine you know from your research, most co-infections (esp Lyme, bart and bab), even if there is a test for them, do not often show up as positive. DS goes to the LLMD clinic mentioned above - the pulsing method - and they go by symptoms to make a clinical diagnosis. DS had a CDC+ Lyme test but also had symptoms for babs and bart and was tested for mycoplasma which he also has (+test since it is a reliable one). Have you looked carefully at these two documents - which may give you an idea of what co-infections you have since any testing you do is likely to be unreliable or even a false negative?

/www.lymediseaseassociation.org/images/NewDirectory/Resources/DrB_SymptomList2005Pdf.pdf

www.lymenet.org/BurrGuide200810.pdf

The pulsed method really cut down on the herxing for DS. He still was very ill the first 6 months but by doing 3 weeks on abx (MWF) and 1 week off he was able to keep ahead of it more than if he was on 1 abx daily without a break. Also by taking 2-3 abx those days, he was able to get coverage for many infections even beyond Lyme. It seems like his clinic works on Lyme continuously and at least 1 main co-infection at a time and then switch it up every 3 months or so. This method has worked well for DS. There are other ways you can go too - like herbal, HBOT etc.

Also as mentioned, detox as much as possible even when you feel well and try as many detox things as you can to see if anything brings relief.

Girlie - sorry that is MY fault. I asked before I knew he was a doctor. I could tell he knew how to read blood results - so I asked before I knew. Not his fault at all.

Huddie those electrolyte numbers are fine
Glad to see all the haptoglobin interest. 1 percent of white and 4 to 10 percent of black people have no haptoglobin genetically. Usually when there is destruction of red cells the haptoglobin goes to zero and you are also anemic. If your bone marrow is working, your body will make tons of reticulocytes to replace the red cells.

My haptoglobin is zero but my red cells hematocrit and retics are all normal. So hematology says ignore it and llmd internist says sees it all the time and probably genetic.

Its interesting though because bartonella and babesia of course cause hemolysis. So its just very weird. Its not a test most would have had done. As i said this guys workup is extremely thorough.

JB,

Thanks for taking the time to explain this stuff. I appreciate that.

How are you feeling today? I hope your symptoms are better.